tag:blogger.com,1999:blog-22558562088253750782024-02-07T20:09:57.756+00:00Life Love and LeukaemiaLisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-2255856208825375078.post-84945088791653519822020-01-18T13:32:00.022+00:002022-11-11T14:44:23.161+00:00What Hugo Did NextOn the 18 September 2018, after 3 years, 2 months and 5 days, Hugo finished his treatment for Acute Lymphoblastic Leukaemia.<br />
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6 weeks later he had his port-a-cath (bumpy) removed and rang the End of Treatment Bell at Great Ormond Street.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1w9AMgHqWMxJdIbwz6OJQjWTRMwN6q7uB4jd0YNAQ2HKuk0VpiOCEcX-aHvv9huPYmKrNG9EOYRDAaIrpA66h6FwXxMIDYPUxtsqQ8Wm-lBz68kbIE9S2Z0P9bV0k5DDH3LG5FB4wv8D6avhtJpSs8-KMrkziiSNiSeP15cWo23DgXR97sZD6oA/s3662/2E168B78-37BC-473A-B547-E4F0390F9793.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3662" data-original-width="2744" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1w9AMgHqWMxJdIbwz6OJQjWTRMwN6q7uB4jd0YNAQ2HKuk0VpiOCEcX-aHvv9huPYmKrNG9EOYRDAaIrpA66h6FwXxMIDYPUxtsqQ8Wm-lBz68kbIE9S2Z0P9bV0k5DDH3LG5FB4wv8D6avhtJpSs8-KMrkziiSNiSeP15cWo23DgXR97sZD6oA/s320/2E168B78-37BC-473A-B547-E4F0390F9793.jpeg" width="240" /></a></div><div>
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This signalled the end of chemotherapy, steroids, weekly blood tests and all related medication.<br />
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So what has Hugo done since?<br />
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He has celebrated! There was a celebratory dinner, we partied with friends, spent a weekend at Thomas Land, took a family trip to Centre Parcs during the first available school holiday. We were granted a wish trip to Paris and went all out on a big holiday to Disney World in Florida.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuuQgrqycMtnNosxexOCj-q4D3aiVe7od_yvpeaPDvtcv6Nr22glpkanx6oMlEjXCBXNDkydyFU1SzeaXvOFr_wsQfszOF0uy2zRKinL102_n3Wo6J9MCLWizadbN0junqL3sEiKCCosE3ByWrZSk8pBtCIMoC7y4YDQI3cge1OmeaKhCFROke_Q/s5568/22550B2D-EB75-4828-A5BB-16DE9BB698EA.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3712" data-original-width="5568" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuuQgrqycMtnNosxexOCj-q4D3aiVe7od_yvpeaPDvtcv6Nr22glpkanx6oMlEjXCBXNDkydyFU1SzeaXvOFr_wsQfszOF0uy2zRKinL102_n3Wo6J9MCLWizadbN0junqL3sEiKCCosE3ByWrZSk8pBtCIMoC7y4YDQI3cge1OmeaKhCFROke_Q/s320/22550B2D-EB75-4828-A5BB-16DE9BB698EA.jpeg" width="320" /></a></div><br /><div><br />We have celebrated all the 'firsts' since the end of treatment. Christmases and birthdays feeling that little bit more special without the cancer hanging over us.<br />
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We have relished the things we were unable to do, or were more difficult to do, while on treatment. Hugo has been on an aeroplane and abroad for the first time, and we are now the proud owners of a puppy. We have found joy again in things we had taken for granted in our pre-cancer lives, things we had missed.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLmMcIS7dqYIcMQnKY-VXwe6BhoRDRnSWNfFlJN-QTKR8c5-l9Y818woP_ou6_eD6tJmiy-RBVWtuwTOWsY4wnOlbIvRnbeF-i7UGKybVJRHYQitClJTURFEt4jvQeOOxkD-EmWDfATmGvJ_cT6qKYzx-3ZTnGJOaz_H2RyufHNzLZSCR6M59swg/s3662/497EC583-773C-4195-A5AE-39E27C869028.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3662" data-original-width="2744" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLmMcIS7dqYIcMQnKY-VXwe6BhoRDRnSWNfFlJN-QTKR8c5-l9Y818woP_ou6_eD6tJmiy-RBVWtuwTOWsY4wnOlbIvRnbeF-i7UGKybVJRHYQitClJTURFEt4jvQeOOxkD-EmWDfATmGvJ_cT6qKYzx-3ZTnGJOaz_H2RyufHNzLZSCR6M59swg/s320/497EC583-773C-4195-A5AE-39E27C869028.jpeg" width="240" /></a></div><div><br />
We have rested. As much as there has been celebration, there has also been recovery. The 3 years of treatment left all of us exhausted, both mentally and physically. We had to give ourselves permission to just be and ignore the pressure we were placing on ourselves to seize and enjoy every moment. To accept that it was ok to just spend a day at home relaxing.<br />
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Hugo's walking has improved. His movements are more fluid and his legs have become stronger. He has more energy and as of September last year, he was able to walk to and from school without his wheelchair. His appetite has increased, although he is still very fussy about what he eats. He has lost the weight the steroids caused him to gain, especially around his middle and his face. <div><br /></div><div>There have been wonderfully normal moments, like the loss of baby teeth, starting Beaver Cubs, school assemblies and sports days. All his immunisations have been re-done and it is hoped his immune system is now back to full strength again.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsFrTgWzBEMoyh4bPTI2RFdOn_m6yjdiH2gPJ0nugsY_tFKiTUW4R51Ed1fsYNMrjFIy9Ad07KknewfLlc4_gjBnWa3HZRp3EPQN59jHyciA5Y64DUxbktrXxTH2qEzodpjidRw-SArZTfPWpm0Y3RaAcqSSJ26LeMWnY7XPbVfaaSoiKmpzS5nQ/s4032/1D9075AA-3943-40B7-9629-2F191E4DDDBB.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsFrTgWzBEMoyh4bPTI2RFdOn_m6yjdiH2gPJ0nugsY_tFKiTUW4R51Ed1fsYNMrjFIy9Ad07KknewfLlc4_gjBnWa3HZRp3EPQN59jHyciA5Y64DUxbktrXxTH2qEzodpjidRw-SArZTfPWpm0Y3RaAcqSSJ26LeMWnY7XPbVfaaSoiKmpzS5nQ/s320/1D9075AA-3943-40B7-9629-2F191E4DDDBB.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIQAhQzfeRNW9i0je5vSsVKRge5BcfALyZ89JW8AsVtzfgDJJTfqJokNeHwNjBe4oJQfENAPg0Z1SJ9YvOEQwWC_1gwRiEEbiyCrauJFJ5sLHRl1QvPvealmufmEzKpVPAkr3G2caekyh79-6Xi0A2PFqpEBc2EVw-gSOTwOuTnHdNZ6nU5Jco_A/s3662/4B5D0036-A26F-41F0-A901-FE31ED9C4500.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3662" data-original-width="2744" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIQAhQzfeRNW9i0je5vSsVKRge5BcfALyZ89JW8AsVtzfgDJJTfqJokNeHwNjBe4oJQfENAPg0Z1SJ9YvOEQwWC_1gwRiEEbiyCrauJFJ5sLHRl1QvPvealmufmEzKpVPAkr3G2caekyh79-6Xi0A2PFqpEBc2EVw-gSOTwOuTnHdNZ6nU5Jco_A/s320/4B5D0036-A26F-41F0-A901-FE31ED9C4500.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbwByRl2F2UwslihOkr78-0JLRsfhCTvXXUM9sWod4GJARAMzDUZqVqF1Dt2epmAkEzQ42-SOAFxUQ8J6AHcuc__PHJAZ4ErTjUKXk22XM0TquGCDx1_93z0ZlmxkbQWBlrcsQN9eic_5ka4L3-eHf7mHpQUqzMvx1XsAx6_TXN_IpOD40GF29zA/s4032/F879E2CF-EF16-4B57-B9BA-414C7EC25343.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbwByRl2F2UwslihOkr78-0JLRsfhCTvXXUM9sWod4GJARAMzDUZqVqF1Dt2epmAkEzQ42-SOAFxUQ8J6AHcuc__PHJAZ4ErTjUKXk22XM0TquGCDx1_93z0ZlmxkbQWBlrcsQN9eic_5ka4L3-eHf7mHpQUqzMvx1XsAx6_TXN_IpOD40GF29zA/s320/F879E2CF-EF16-4B57-B9BA-414C7EC25343.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvSR2aQoWoUH0BRJcpFoYc9f78rJlshJXTNaBDNEgJyvI-JjGMcjmZM6tZ4ZCYJzJ3vnZj9a647GFGpzsj6cUADG-4iBe-gnpvELUgRYv2miS7UdDpQk5HeErOyCrtWD_7FCZVmGKObRsOxfoSiOq1uyz9m-v6TLcot3or7QFXfb1yk1pKhsyxnA/s4032/761AE6CF-4248-439B-9040-4E4D643A8001.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvSR2aQoWoUH0BRJcpFoYc9f78rJlshJXTNaBDNEgJyvI-JjGMcjmZM6tZ4ZCYJzJ3vnZj9a647GFGpzsj6cUADG-4iBe-gnpvELUgRYv2miS7UdDpQk5HeErOyCrtWD_7FCZVmGKObRsOxfoSiOq1uyz9m-v6TLcot3or7QFXfb1yk1pKhsyxnA/s320/761AE6CF-4248-439B-9040-4E4D643A8001.jpeg" width="240" /></a></div><div><br /></div><div>He looks well. He looks healthy. He looks happy.</div><div>
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We are happy. Life feels lighter and brighter. It feels good.<br />
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Of course, not all of it is good. The cancer experience doesn't end the minute the last chemotherapy dose is given or the bell is rung.<br />
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We still have hospital appointments, firstly every 4 weeks, then every 8 weeks and now every 12 weeks. It's a more pleasant experience than before and offers the reassurance we need, but it is also a reminder of all Hugo has been through and what so many other children are still going through.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLI7anuNSWAXXEawzbSMhzJwsXJlKKgXJo6gOJ3SpNl_WRMDGO4J4ZYMs0K4D29eZ_XAmE4E-b2nzBgHOk_fi5BW8elsZAW9yC2brX1hVrTPytrTtGvyiEnLoHrP82GcUj-gcGnomcOEx7ofJo16SA4gtJ2XR8TClzKx9xRrsYp73RG5XZuzYdJA/s2900/FE981C89-5CC5-4AE2-A245-E597715AF6CC.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2900" data-original-width="2173" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLI7anuNSWAXXEawzbSMhzJwsXJlKKgXJo6gOJ3SpNl_WRMDGO4J4ZYMs0K4D29eZ_XAmE4E-b2nzBgHOk_fi5BW8elsZAW9yC2brX1hVrTPytrTtGvyiEnLoHrP82GcUj-gcGnomcOEx7ofJo16SA4gtJ2XR8TClzKx9xRrsYp73RG5XZuzYdJA/s320/FE981C89-5CC5-4AE2-A245-E597715AF6CC.jpeg" width="240" /></a></div><div><br />
Although there has been much improvement, Hugo still isn't where he should be physically and he is becoming more aware of the differences between him and his friends. It appears he is also suffering with processing issues, which can be caused by certain types of chemotherapy. He is behind at school and is undergoing psychological review to see what can be done to help.<br />
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While I am aware these problems are small in comparison to what might have been, how we are still so incredibly lucky, I also feel sad that his life will continue to be difficult. That new side effects may emerge and so much about his future remains uncertain.<br />
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There are days when we seem to have found a balance in our new normal lives. Moments when I can almost forget. I have been pleasantly surprised that the the fear and worry has not been as all consuming as I'd feared. However, there are days when I am convinced the cancer is going to come back. Where every bruise, hurty tummy or tiredness has me fearing the worst.</div><div><br /></div><div>It’s difficult not to look back, to not feel the weight of all that has been. I don’t want to forget, we have overcome so much and the experience has shaped us all, but I also want us to be able to look forward with freedom, to hold onto that lightness. We deserve to be able to relish every bit of our nice new normal.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaWGb-_33RBvnu3xxDb1zWqPnpWi5smlRe9dmRjXPjf2asVoyZp7AhdIP8BqVYBt_ey-rPsZfAQn3NJ4n6Wv5ATw-VPN8KHsmpPSn274vWbg-uj85aJu9p5-HQ9v-gnERTek_pA4lDQLu_iYvU-g0rA3i6i94e_UQ18NE9DZ-ZmBSOoSOluXGPTg/s4032/23FBE6BF-357E-4917-9839-1E13FA01A6E3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaWGb-_33RBvnu3xxDb1zWqPnpWi5smlRe9dmRjXPjf2asVoyZp7AhdIP8BqVYBt_ey-rPsZfAQn3NJ4n6Wv5ATw-VPN8KHsmpPSn274vWbg-uj85aJu9p5-HQ9v-gnERTek_pA4lDQLu_iYvU-g0rA3i6i94e_UQ18NE9DZ-ZmBSOoSOluXGPTg/s320/23FBE6BF-357E-4917-9839-1E13FA01A6E3.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhadLbRZyqiayEjLQvf8LKpnNfzBbQVs0K7gzah6jTj7tgVTAPAYpsYUWJuOKwYpRybbyrWGyIXMT0SkTWdxReF5PFx3u8uEbWp6-Kgh_PuV-vmAYFH9av2Tw1qJ3Bc2UJ_5jDEsqfIi43GbpaJCFklEdPNNHOOlaq9kuS_RLUZk1Qa1LWPZEN9Rg/s4032/3E79F1F3-26F0-4A1B-846A-55497775A9D5.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhadLbRZyqiayEjLQvf8LKpnNfzBbQVs0K7gzah6jTj7tgVTAPAYpsYUWJuOKwYpRybbyrWGyIXMT0SkTWdxReF5PFx3u8uEbWp6-Kgh_PuV-vmAYFH9av2Tw1qJ3Bc2UJ_5jDEsqfIi43GbpaJCFklEdPNNHOOlaq9kuS_RLUZk1Qa1LWPZEN9Rg/s320/3E79F1F3-26F0-4A1B-846A-55497775A9D5.jpeg" width="240" /></a></div><div><br /></div><div>Hugo continues to amaze and inspire me every single day. His confidence continues to grow. He is funny, caring and still full of the spark I feared he would lose. I am still so completely and utterly proud of him, for all that he has endured and for all the love in his heart that continues to shine out. I can’t wait to see what he is going to do next.<br />
<br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqIcbyr5bL5ZHvZhknaSp_hqvhwrPtXj5ksStT2YrchEEPLaMRi9Uab6FN-lda2uUga7xY0lf3pRaLIAxWkQzwvUAbZLWcQ-OS_sAIzROie5m56AbiyeBwaF3Ft4RsOQvsV1-TbnoBhS2jSMp4JpG3ZrlB9u0pS5k_1CbMJmZSR94WZN25deI4Rw/s4032/39C18FD2-6EFD-41F3-A849-C94293D76CD8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqIcbyr5bL5ZHvZhknaSp_hqvhwrPtXj5ksStT2YrchEEPLaMRi9Uab6FN-lda2uUga7xY0lf3pRaLIAxWkQzwvUAbZLWcQ-OS_sAIzROie5m56AbiyeBwaF3Ft4RsOQvsV1-TbnoBhS2jSMp4JpG3ZrlB9u0pS5k_1CbMJmZSR94WZN25deI4Rw/s320/39C18FD2-6EFD-41F3-A849-C94293D76CD8.jpeg" width="240" /></a></div><br /></div>Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-52131515743970195812019-06-26T17:37:00.001+01:002022-11-11T14:47:52.782+00:00Happy and Sad Tears<div style="text-align: justify;">
Tomorrow Hugo will take part in his school sports day. It's his second one, but his first since finishing treatment. This upcoming event has brought to head a mix of emotions that I have been feeling for a while. </div><div style="text-align: justify;"><br /></div><span><a name='more'></a></span><div style="text-align: justify;"><br /></div>
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Firstly I feel grateful. So incredibly thankful that he is here, that he gets to take part in these everyday childhood rites of passage and the wonderful normality they bring to our lives. That his legs have strengthened and his confidence has grown since last year's sports day and that he continues to make improvements in leaps and bounds. I feel proud, so very proud, of all he has overcome and how he has dealt with the difficulties he still faces. He is doing so well at school, he has a group of lovely friends and I know he has been practising his races. I am excited and nervous for him. He has finished treatment, we are moving steadily away from the struggles of the last few years and our nice new normal life is going so very well.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGCe78wsy2Qgycebzr-df9normn4G71FjVFzJ9aSNOlzfEn9rXLZCfCJmz8mDIwyKe6vZSnxfol5GZ4Is7dye94WJ2ourXkHqCf-IlcByaZyT-JAZIjZQ2CIPdYAIay8yDukDHYTGELg/s1600/Hugo+trampoline.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGCe78wsy2Qgycebzr-df9normn4G71FjVFzJ9aSNOlzfEn9rXLZCfCJmz8mDIwyKe6vZSnxfol5GZ4Is7dye94WJ2ourXkHqCf-IlcByaZyT-JAZIjZQ2CIPdYAIay8yDukDHYTGELg/s200/Hugo+trampoline.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hugo has found his own trampolining style!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Pg8VQQvFTkl3nA_PePUAcPJtmUSnCvLJ_5SdQjQHZbhJv2FXWY0JJztbndneiN3tSyr64C3JLtb3wIad0BYj2XEetxavvmJEd2tzd58DxcZ10WYqlt6i0KdoeJ_FFcpHg32BfC1_Ng/s1600/Hugo+walking.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="614" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Pg8VQQvFTkl3nA_PePUAcPJtmUSnCvLJ_5SdQjQHZbhJv2FXWY0JJztbndneiN3tSyr64C3JLtb3wIad0BYj2XEetxavvmJEd2tzd58DxcZ10WYqlt6i0KdoeJ_FFcpHg32BfC1_Ng/s200/Hugo+walking.jpg" width="191" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Marching along with Henry</td></tr>
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But I am also a little sad. Despite the vast improvement in his walking, he is still behind his peers. I see him, even when others may not notice. I see him walking, his ankles, feet and knees turning inwards, the muscles still not strong enough to fully support him. I know the effort it takes him to walk or run alongside his big brother or friends, how much harder he has to work and how often he still needs his wheelchair. My heart breaks a little when he tells me he can't do some of the things his friends can, or that he again came last in the monthly cross country run at school. I feel frustration at the marks cancer has left and the unfairness that his fight with it is still not over.</div>
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He is a happy child. He isn't worried about winning or losing. He's kind, thoughtful and just enjoys being with his friends. But he is also sensitive and he's becoming more aware of the things that make him different. I imagine this is the same for all children of his age, an awakening of self awareness, of finding who they are and where they fit. I am sad that Hugo is having to face some tough realities and I hope, I so hope, that he doesn't let them break his spirit.</div>
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Then I feel guilty. Because he is here and so many other children who have walked his path are not. So many parents who would do anything to see their child take part in a sports day, to get to live the life we do. To spend even a moment feeling sad or in any way disappointed seems so ungrateful. </div>
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We are so very lucky, but at the same time there remains an unfairness. Trying to balance the two is hard. We all know that whatever our situation, however bad things might be, there is always someone worse off, but that doesn't mean our difficulties are not valid. To be constantly positive, to put on a brave face and pretend everything is perfect, or even just fine, can be exhausting. And why should anyone have to?</div>
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I'm not really sure what the point of this post is, but I know I can't be alone with these feelings. Life is a constant balancing act, in so many different ways. There are days when it is easy to be positive, to see nothing but the bright side and then there are other days, when the scales are tipped firmly towards sadness or frustration, when the difficulties can seem overwhelming.</div>
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So I will go to Hugo's sports day and I will cheer on my little man and tell him he's amazing. I will probably cry (again!) both happy and sad tears, and I guess that will be okay.</div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com8tag:blogger.com,1999:blog-2255856208825375078.post-19856741008417289052019-01-28T16:52:00.002+00:002019-06-26T17:37:19.435+01:00Finding the Balance<div style="text-align: justify;">
I started to write this blog post a few weeks ago. I was full of excitement and enthusiasm for the start of the new year. We'd been waiting a long time for this, for our first cancer free calendar year since 2014.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV5dpiANEoGsxPDD1MyvCK-LQSRab9bH4lhzPEa52MIb6S1caCmJd-qpGtjrkqg6KJFSbKWK-CS-HbInd78N1VYFYbdhGJqHZoconnjfFzt190Nka1yGJH0Ql_wXTSgcu_30hTwj0z9g/s1600/Hugo+NYE2018.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV5dpiANEoGsxPDD1MyvCK-LQSRab9bH4lhzPEa52MIb6S1caCmJd-qpGtjrkqg6KJFSbKWK-CS-HbInd78N1VYFYbdhGJqHZoconnjfFzt190Nka1yGJH0Ql_wXTSgcu_30hTwj0z9g/s200/Hugo+NYE2018.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating the New Year</td></tr>
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I wrote with positivity on how the start of this year felt like a breath of fresh air. How the year and our future was full of possibilities, of freedom and discovery. A year of finding ourselves, both as a family and as individuals. A time of figuring out who we are now and what we want without cancer hanging over us. It would be about picking ourselves up and marching forward into our nice new normal.<br />
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As I read back on my draft I can feel the strength and happiness I felt when I wrote it. It's infectious and makes me smile. I felt good, so good.<br />
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Then a few days later I received some sad news, more than one lot of sad news actually. Heartbreaking news from others who walk the same path as us. Feelings of unfairness, anger, guilt, worry and most of all incredible sadness overwhelmed me. It served as a sharp reminder of how fragile and deeply tragic childhood cancer can be. How random and unpredictable it is. That it can throw up cruel situations for which there are just no words. It broke me a little.<br />
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We have been, and will forever remain, part of a world so often full of sadness and heartbreak. We can't, and nor would we want to, ignore or fail to be moved by stories of those less fortunate, or not be aware that it could still so easily be us. But it is also a world full of strength, courage and inspiration. We have learnt so much and despite everything there are positives to be taken from our darkest days.<br />
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Maybe we need to weed out these positives, carry them forward and try to leave the rest behind. Perhaps this year is about learning to navigate the new highs, while accepting that there will still be lows. I need to hang on to the enthusiasm I felt, the happiness that is still there under the surface.<br />
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So this year might not be about marching forward with the force of a tornado, full of boundless energy, trying to create something brand new. More about finding a balance between the old and the new.<br />
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In the months since Hugo has finished treatment, we have all felt lighter. The weight of the fear and worry has slowly lifted and I have faith that it will continue to do so. That the black cloud of cancer will not darken the days of our future as it has our past. I refuse to let it. We deserve those lighter, happier days and we owe it to those less fortunate than us to live them as fully as possible.<br />
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Like the physical effects on Hugo, this is a process of recovery. Of not expecting too much of ourselves too soon. Continuing to take it one day at a time, to learn and to grow. To feel thankful for where we now find ourselves, while still acknowledging where we have been. We can allow this experience to shape us, but never to define us.<br />
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I intended this post to be a positive one and despite the sadness within in it, I hope it still is.<br />
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We are once again heading into the unknown, but this time in a good way. 2019, I think we are ready for you.<br />
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-58237116788952201802018-10-09T11:59:00.001+01:002019-01-28T16:53:32.545+00:00End of Treatment Bubble<div style="text-align: justify;">
It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like?</div>
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In many ways it doesn't look very different to life on treatment. There has been medication every day, (although not the yucky chemotherapy or steroid type), the nurse has been twice and the physio has visited Hugo at school. We have all had colds and the worry that Hugo's will develop into something more serious has been there, just like it has been for over 3 years.</div>
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But somehow everything is different. I feel lighter. I'm still exhausted, but somehow I feel energised too and excited about the future. The fog in my head that arrived when Hugo was diagnosed, at last, seems to be lifting. Things just seem a little clearer, a little brighter.</div>
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The mix of emotions is still there, but the intensity has eased. During the days and weeks leading up to the end of treatment, I felt anxious and tearful, along with the expected excitement. My adrenaline was pumping and the emotions were almost overwhelming. The hugeness of what was about to happen after so long was almost too much to comprehend. Then it happened. The big, light at the end of the tunnel moment. Bringing with it a huge wave of relief.<br />
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I have thrown myself into celebrating. There has been a dinner out, a bucks fizz breakfast (for me, not Hugo!), a hastily arranged gathering that turned into a bit of a party and a stay at Thomasland. I have been looking at trips away and days out, keen to make the most of our newfound freedom.<br />
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We are sitting in an end of treatment bubble, fully enjoying and relishing all the good, all the happy. There are moments when the fear and worry threaten to creep in. The reality of what we have been through is slowly easing its way in, trying to invade our bubble of happiness. But for the most part, these feelings are held at bay, pushed away outside the bubble. I refuse to let them in and am holding on as hard as I can to this lighter, brighter feeling of relief and joy.<br />
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I am fully aware that this bubble will one day pop, that this isn't really the end of our experience. I know it could come back, that there is every chance Hugo will be living with the effects of the harsh treatment for many years to come. But whatever the future holds, this achievement and this wonderful feeling is worth celebrating and enjoying to its full extent. We deserve this time in our little bubble. I'm so tired of feeling sad and exhausted, of living in fear. I refuse to let this cancer disrupt our lives any further than it already has.</div>
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I want us to live again, to live a life free and unburdened. To bring laughter back, laughter that makes cheeks hurt and tears fall. I want us to be all that we are capable of being, with nothing holding us back, including ourselves with the fear of what might be. We have learnt how important it is to make every day count and how lucky we are to be able to do so. I want us to get out there and seize the day.</div>
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Hugo seems to have a newfound energy. I don't know if this is because of stopping chemotherapy, or if he is just picking up on the mood, but he too seems lighter and brighter. His walking continues to improve, his confidence seems to be growing. He seems fully ready and willing to grab hold of this next chapter of his life with both hands.<br />
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I still don't think he understands the significance of finishing treatment, but it doesn't matter. He is happy and it is beautiful. I am so excited for all that is to come for him, for the new world he is slowly discovering.</div>
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Most of all I am unbelievably proud of him. His smile and strength have often hidden the true extent of the battle he fought. But I know. I know all that he endured. How cruel and brutal this experience has really been. I have watched him every step of the way, and he has been incredible, in every way possible. I want to shout from the rooftops 'he did it, he bloody did it!'. Because he did, my amazing little mad did it. Watch out world because here he comes.</div>
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<i><span style="color: red;">When the sharpest words wanna cut me down</span></i></div>
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<i><span style="color: red;">I'm gonna send a flood, gonna drown them out</span></i></div>
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<i><span style="color: red;">I am brave, I am bruised</span></i></div>
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<i><span style="color: red;">I am who I'm meant to be, this is me</span></i></div>
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<i><span style="color: red;">Look out 'cause here I come</span></i></div>
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<i><span style="color: red;">And I'm marching on to the beat I drum</span></i></div>
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<i><span style="color: red;">I'm not scared to be seen</span></i></div>
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<i><span style="color: red;">I make no apologies, this is me.</span></i></div>
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<i><span style="color: red;">This is Me, The Greatest Showman</span></i></div>
<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-21276988855525232482018-09-14T18:05:00.001+01:002018-10-09T11:59:59.547+01:00Getting my Spark Back<div style="text-align: justify;">
In just a few days Hugo will finish his treatment. A thousand thoughts and feelings have been racing around in my head over the last few weeks. Many of them positive, but some feel negative and selfish. It's difficult to make sense of them all, hard to put them into any kind of order. It feels a little overwhelming, this strange mix of emotions. I am excited, I am so very excited, but I am so many other things too.</div>
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I'm scared. Terrified it will come back. All this time we have been fighting and now we just stop and hope. Hope that it has all been enough, that it's all been worth it. But what if these last 3 years have only been the beginning of our journey, what if the worst is yet to come? Or I continue to be consumed by worry, the what ifs and am unable to move beyond the fear?</div>
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I'm worried the side effects he has suffered won't improve and that he will experience life long problems from the treatment. I fear people won't understand these worries, that they won't get that this isn't really the end, physically or emotionally.</div>
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I feel happy. So happy to be starting this next chapter of our lives that we have so longed for. I'm thrilled for Hugo, for all that awaits him. I can't wait to watch as he grows and changes and slowly adjusts to life without medication and its side effects. I smile just thinking about it, about him and all the wonders that are ahead of him. I long to see all that he is capable of being, to see him embrace his new found freedom. I know he will continue to make me proud every single day of his life and that wonderful spark of his will grow ever brighter.</div>
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<span style="text-align: justify;">I'm a little lost. I am so grateful that I have been able to be there for Hugo during his treatment, but I have also thrown myself into everything blood and childhood cancer related. It has given me a positive focus that I have been both thankful for and have enjoyed, but what happens next? Will I feel as passionately about raising awareness and funds? What about the relationships I have developed with the charities, the volunteer work and the teams I am so proud to be part of? Will it be the same? Or will I want to step away from a world that is so often full of sadness and heartbreak?</span></div>
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What about the blog that I have so enjoyed writing? Writing this blog has probably been one of the bravest 'putting myself out there' things I have ever done. I didn't realise how much I would love it and I know I would miss it, but what do I have to write about now? I don't know how to write anything that isn't about Hugo and cancer, and would people want to read it anyway?</div>
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I'm excited to look forward, to make plans and get stuck into the things we haven't been able to do, the parts of our lives that have had to go on hold. Like our house extension, holidays abroad and granting Hugo's wish of seeing the sparkly lights in Paris. There is a whole world of possibilities out there, so many wonderful adventures for us to go on and I am ready to embrace and enjoy every single moment. To seize the day with enthusiasm and an appreciation that I didn't have before.</div>
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I feel tired, so very tired. I have often said that this experience hasn't dimmed Hugo's spark, but I fear it may have dimmed mine. My confidence has been knocked in so many ways. I have blamed cancer for so much - for the mess of my house, my lack of enthusiasm, for permanently feeling like my head is somewhere else. I haven't been the mum, wife, daughter, sister or friend I want to be. But what if that's just how I am now, if the emotional scars have caused permanent damage? What if I can't undue all that it has done? This experience has aged me and I feel I look tired and dull. How do I get my spark back?</div>
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I am incredibly thankful, that we have made it to this point, that Hugo is well and happy, that he is still here. We are among the lucky ones and there isn't a day that passes that I am not acutely aware and extremely grateful for this.</div>
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I feel reflective and thoughtful. I have learnt so much about myself and others. People have been so wonderfully kind and supportive, it has made me question what I would be like if the shoe were on the other foot. It has forced me to reflect on who I am and who I want to be. An experience like this gives you a different view of the world and the people in it. We have felt such sadness and heartbreak. These have been the most difficult of days, but there have also been moments of pure joy, unexpected happiness in amongst the worry. It is impossible not to be changed by this experience in a million different ways that can't quite be understood or articulated. I hope I am a better person because of it. I just know I am different now, but what I am going to do with that knowledge, what positive purpose it can fill, I just don't know.</div>
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There are times I feel hopeful and brave. That we will take what we have been through, the strength we have discovered, and use it to create a positive and wonderfully normally family life. We will continue to look for the joy in the ordinary and to relish all that we have been thankful for. Hopeful that we can look forward rather than back. To find ways to celebrate as we tick off the weeks, months and years of our after treatment life, as the memory of cancer dims and fades.</div>
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Much of the time I feel overwhelmed by the enormity of the situation. Of what we have been through, at how huge this end of treatment moment is, the difference it will make to our lives. I feel tearful at the thought but I don't know if they are happy or fearful tears, I suspect they are a mixture of both.</div>
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I am lacking direction. For so long I have put Hugo first, putting thoughts of myself to the back of my mind. That is exactly how it should be and what I needed and wanted to do. But now I am starting to think a little about me again. What does the future hold for me, what do I want? I no longer work, no longer have the focus or direction that my job gave me. I feel very fortunate, but also a little without purpose. I have always admired people who have ideas and go for it, unhindered by a fear of failure. I have never been one of those people. I have wished for the courage to take the ideas in my head and make them happen. Maybe now is the time, but I don't know what and I don't know how.</div>
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I know I will be ok really. That I will continue to put one foot in front of the other, just like I have been doing. If I can get through the last 3 years, then the future should be a breeze. I know the thoughts in my head will slowly untangle and start to make sense, that the answers to all these questions will come or cease to matter. The fears and worries will ease as time goes by and we get used to this new normal, this nice new normal. It's a good problem to have and I know I will do my best to embrace it. The only person putting the pressure on is me, and I should probably be a bit easier on myself. I should just do what I've always done and take it one day at a time.</div>
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For the moment I will try my best to let the happy thoughts shine through. To look to Hugo to guide me, just as he has been doing, with his boundless enthusiasm and joy. I will approach this next chapter with love in my heart and a smile on my face and let the rest take care of itself.</div>
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See you on the other side.</div>
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<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com4tag:blogger.com,1999:blog-2255856208825375078.post-65709872271101504112018-09-13T14:41:00.001+01:002018-09-14T18:05:58.312+01:00The Big Questions<div style="text-align: justify;">
After three years of treatment, I suspect many people are a bit lost with Hugo's illness and treatment. Here are some of the questions I have been asked and a few others that I thought people might want answers to. </div>
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Do you mind talking about it?</div>
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<i>Probably a good one to start with! No, not at all. He's my son, this is our life, I'm always grateful if people take the time to ask after him or try to understand his condition and our life a little better. So ask away!</i></div>
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Does he still have leukaemia?</div>
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<i>Strictly speaking, no. Most patients with Hugo's type of leukaemia (Acute Lymphoblastic Leukaemia - ALL) will reach a level of remission after just 4 weeks of treatment. However, if treatment were to stop at that point, the leukaemia would definitely come back. Treatment continues beyond that point to make sure every single leukaemic cell has gone (even the really sneaky ones!) and to teach the bone marrow how to function properly again. He is still considered to be in 'active treatment'. We will count his 'days in remission' from his end of treatment date.</i></div>
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Why is treatment longer for boys than girls?</div>
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<i>Boys risk the leukaemia retuning in their testes so their treatment plan is 12 months longer than girls.</i></div>
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Can it come back after treatment has finished?</div>
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<i>Yes, up to a quarter of children with ALL will relapse. The likelihood of relapse decreases the further out of treatment a patient is. Relapsed ALL is more resistant to treatment, but is treatable. Patients are also more at risk of developing other types of cancer.</i><br />
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<i>The fear of relapse has been very real and I know it will continue to be so. Sometimes I am convinced it will come back, that it's just a matter of time. Other times I am able to be more optimistic. I am hoping that as time goes by the fear will lessen.</i></div>
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What is Leukaemia?</div>
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<i>Leukaemia is a cancer of the white blood cells. Acute lymphoblastic leukaemia is an overproduction of immature lymphoid cells (one of the types of white blood cells). Normally these cells, which are produced in the bone marrow, repair and reproduce themselves in an orderly and controlled way. In leukaemia, however, the process gets out of control and the cells continue to divided but do not mature. Immature cells fill up the bone marrow and stop it making healthy blood cells. </i></div>
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Will his walking and other side effects improve when treatment ends?</div>
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<i>That is the hope, yes. Hopefully once the medication stops it will allow his body to recover and catch up to where it should be. Unfortunately many patients suffer with long term side effects after their treatment ends, so it is definitely a watch and wait (and cross fingers) situation.</i></div>
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Will all medication stop at the end of treatment?</div>
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<i>All chemotherapy and steroids will stop on his last day of treatment. Some of his other medications will continue for a while afterwards, but hopefully not for too long. </i></div>
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How did you know he had leukaemia?</div>
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<i>I get asked this one a lot (and no, I don't mind). </i></div>
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<i>Hugo's first symptom was a refusal to bear weight on one of his legs. Over the next few weeks he developed viral like symptoms that gradually got worse and didn't disappear. He was tired, pale, he lost his appetite and his glands were swollen. He had a hip x-ray and was diagnosed firstly with irritable hip syndrome, then a virus, before a blood test (as part of a paediatric referral) showed he had leukaemia. From his first symptom to diagnosis was about 5 weeks. He was diagnosed on 13 July 2015 aged 2 years and 4 months.</i><br />
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When does treatment end? When will he ring the bell?<br />
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<i>18 September 2018. He will ring the bell when his port-a-cath (bumpy) is removed, which is due to be on 7 November.</i></div>
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I don't know how you cope</div>
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<i>More a statement than a question, but people say it a fair bit. </i></div>
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<i>You just do. One day at a time. Sometimes I fall apart. I cry, I shout. I get angry and sad and everything in-between. Some days I feel completely overwhelmed just trying to get through the day. Then I carry on, because he's my son and I don't have a choice. I'm not brave, or inspirational, I'm just a mum. I know anyone would do the same. Maybe we don't realise how strong we are until being strong is the only option we have.</i></div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-36666189156468558362018-09-12T13:44:00.000+01:002018-09-13T14:42:17.105+01:00Leaving Normality<div style="text-align: justify;">
A couple of months ago, on the way back from a hospital appointment, Hugo asked me what it felt like when I had my bumpy taken out. Bumpy is our name for Hugo's port-a-cath/central line. The little device that sits just under the skin to the side of his chest. It will be removed a few weeks after treatment finishes. I explained that I'd never had one and we chatted for a while about why he does. He seemed content with this, but a couple of days later he asked big brother Henry what it felt like when his bumpy came out. It made me wonder how much Hugo understands of his illness and what 'end of treatment' actually means to him.</div>
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Hugo was 2 years and 4 months old when he was diagnosed. We didn't have to have a difficult and emotional conversation with him explaining that he had cancer and what that would mean for the next 3 years. He was just too young. We've tried to explain things as we've gone along, our language changing as his understanding has grown over the years, but it's impossible to know just how much he comprehends.</div>
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So much of the treatment is just part of his life. The hospital visits, the weekly blood tests, the medication he takes everyday. He never asks why, he never protests. Sometimes this saddens me, but there is no doubt it makes this experience easier to deal with. But what will he make of it when these aspects of his life are no longer there? Will he miss them? Will he feel a little lost without them? All this time we have been excitedly counting down to the end, looking forward to the day when our lives will improve, when we get some normality back. But for Hugo, these last 3 years are his normality. The only life he has ever really known is about to change, he is about to leave his normality.</div>
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He has never longed for his pre-cancer life in the same way an adult or older child might, because he just doesn't remember. He doesn't understand the many ways in which cancer has affected our lives, he doesn't miss what might have been or feel deprived at things missed out on. He's happy, he's content, this is just his life. I know he won't miss taking medicine and I know he will enjoy the treats we have lined up to celebrate, but beyond that, I just don't know what he will make of it all.</div>
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We have started to try and explain a bit more about the things that will change, to prepare him for the differences. It's not as simple as 'no more medicine' or 'no more hospitals', it's not as black and white as that. I hope we're speaking in a language he understands. I hope he can feel some excitement and pride as we tick off the 'lasts'. He has shown himself time and time again to be resilient and strong and I know he will continue to be so. That he will adapt to his new normal, his new life, with joy and enthusiasm.</div>
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I want him to understand what it means for his treatment to be ending. To celebrate and feel proud of all he has endured. But of course he doesn't see himself as brave, he doesn't understand the enormity of the battle he has fought and I don't want to scare him. I don't want to take away the innocence he has by overloading him with information that he's just not ready to hear. I suppose one day he will be. One day he will have questions and at various stages of his life he will have waves of understanding and I will be there then. I will answer his questions and tell him how amazing he was. How he showed so many people what courage really was, that he fought his battle with love in his heart and a smile on his face. How his spark never once dimmed despite all that was thrown at him. We will celebrate again and again at the battle he will continue to win and I will watch as he sets the world alight with the strength, determination and courage that this experience has given him, even if he doesn't know it yet.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com2tag:blogger.com,1999:blog-2255856208825375078.post-20061682212923585672018-09-10T10:45:00.002+01:002018-09-12T13:44:38.909+01:00Day in the Life - Side Effects<div style="text-align: justify;">
During the early phases of treatment Hugo suffered with many of the side effects synonymous with cancer. His hair fell out, he was sick, tired and pale. He lost weight, his light dimmed and he looked ill. Now, in this final maintenance phase, the side effects are often less obvious, but very much still there.</div>
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Loss of appetite - chemotherapy, it seems, results in a strange relationship with food. It's hard for Hugo to describe because he no longer knows any different, but I think food tastes strange to him, maybe it makes him feel a little sick. What I do know is that he doesn't eat very much. When he does eat he tends to stick to very plain foods, such as pasta (no sauce), bread and butter, or cheese. He often eats in phases - he finds a food he likes and then eats it for breakfast, lunch and dinner. There are plenty of times when he barely eats at all and wakes up in the morning feeling ill and weak. Days when even Haribo or biscuits can't tempt him. His diet is far from varied, he never hits his 5 a day and he drinks more milk than he should. I've heard stories of children that take a fancy to hot or spicy foods, because it's the only thing that gives them some flavour. Other children refuse to eat at all and need a feeding tube. We have been told on many occasions by his team to just go with it. As long as he is eating something, then let him have what he fancies (within reason!). </div>
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This means it's rare for us to sit at the table as a family and all eat the same thing and it's a guessing game as to whether Hugo will eat what he has asked for. We waste a lot of food and at times it's hard not to feel frustrated when he refuses to eat the meal he has asked for. We still go out to restaurants (usually Pizza Express because Hugo likes dough balls....sometimes). Hugo may eat a little, sometimes we take a packed lunch for him, other times it's just a glass of milk. It often becomes a game in distraction because Hugo has finished or rejected his food while the rest of us have barely started.</div>
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I have lots of photos on my phone of Hugo eating, because it's so unusual and always gives me such pleasure to see him tucking into something, especially something new. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO3QDuJlPAKZMOhqFiC9qmr8aDI5y0BN_3mORjzTmcZT1tCSdNrbimS0HZ9CAJVO-N3GU7WpTt9j0vJ1DACRJDaUPnn-Upt5l5toncWA1loHyd869voxc0ZetEBtzhXlZ7lwykwS9EEA/s1600/Hugo+eating+pancakes.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO3QDuJlPAKZMOhqFiC9qmr8aDI5y0BN_3mORjzTmcZT1tCSdNrbimS0HZ9CAJVO-N3GU7WpTt9j0vJ1DACRJDaUPnn-Upt5l5toncWA1loHyd869voxc0ZetEBtzhXlZ7lwykwS9EEA/s200/Hugo+eating+pancakes.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On holiday eating pancakes!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm-4HNi92tFVtK3nbv-q3RE6U6YMFHtF9Z37HoKdMJdu044iCUnW858GPRlHN1ehM5Xkh_KAtcOfJAX-fn02rIQar0YXooYxl6_hvIxb-E0FBtpebj-o1bK5mcJ0FvmA3Ud84H4yDjoA/s1600/Hugo+eating+brownie.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm-4HNi92tFVtK3nbv-q3RE6U6YMFHtF9Z37HoKdMJdu044iCUnW858GPRlHN1ehM5Xkh_KAtcOfJAX-fn02rIQar0YXooYxl6_hvIxb-E0FBtpebj-o1bK5mcJ0FvmA3Ud84H4yDjoA/s200/Hugo+eating+brownie.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A chocolate brownie at his favourite <br />
cafe (nearly) always goes down well</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs321EwtxARI9fqr6_MgC2JebrDvu2KaqyVdG0MPTvRn8q1K05Vl2ZAGOrzsR08zeQh6xqEpFSX-xldHLZYvNGedaOU_mgUGZjJKvMwQezgfBWR1s1i88Bkj3oElJik6eyKJ6D8xHQNw/s1600/Hugo+cocopops.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs321EwtxARI9fqr6_MgC2JebrDvu2KaqyVdG0MPTvRn8q1K05Vl2ZAGOrzsR08zeQh6xqEpFSX-xldHLZYvNGedaOU_mgUGZjJKvMwQezgfBWR1s1i88Bkj3oElJik6eyKJ6D8xHQNw/s200/Hugo+cocopops.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">During the Coco Pops phase!</td></tr>
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I feel sad for him that he is missing out. He rarely gets any pleasure from food - no cold ice-cream on a hot day, takeaway pizza on a Saturday night or a warming roast on a Sunday. Sometimes I question whether we should push it more, is he playing us or just being fussy. Then I remember the times he rejects even sweets or the chemo breaks when his appetite improved and I know we need to just keep keeping on. That when he finishes treatment things will improve and a whole new wold of food will open up to him.</div>
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Weak muscles - one of the more noticeable side effects for Hugo has been muscle weakness because it has resulted in the need for a wheelchair. His legs and hips are weak, making it harder for him to walk any distance without tiring. Combined with a broken leg last March, it saw Hugo unable to walk at all for 10 months. The weakness extends to his ankles resulting in his feet turning in so he needs in-soles to support his foot arches. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixVA9cY99xujcJTyly_5wThbnCeiHb7VmKhuXTaaDSvmfxY6KB9QVHSl1xag73fNtxl9TBm7uW-ObAVV9Rj45wJ7w3r7IS6FvoEhH-Vqcf8eXkb4ZskUtTR5cMcFyGMwvVEUpqQVYmzQ/s1600/Hugo+insole+moulds.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixVA9cY99xujcJTyly_5wThbnCeiHb7VmKhuXTaaDSvmfxY6KB9QVHSl1xag73fNtxl9TBm7uW-ObAVV9Rj45wJ7w3r7IS6FvoEhH-Vqcf8eXkb4ZskUtTR5cMcFyGMwvVEUpqQVYmzQ/s200/Hugo+insole+moulds.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being fitted for new in-soles</td></tr>
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He also suffers from peripheral neuropathy (damage to the nerves) in his feet. All of this means it takes a lot more effort for him to walk and he is simply not able to keep up with his peers. He struggles to climb, run, hop or jump and even getting up from the floor can be tricky. It hard to see him unable to keep up, or struggle, but most of the time he gives it a go anyway and I'm so proud of his determination. Like most other side effects, this should improve once he has finished treatment, but it is impossible to say how long that might take.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4c11e6x85tLHGswLL57HtLjiI4aY_2qyVzJWpROxKmlTOYfkTxoCQCGnyLRymlwT75VNVPL4GVSxyat6urFDU3-wzAGKwIlHfhtXrTobM3TA02RpOHqBx3qUlMx2lbNVLMKfKT0eeoQ/s1600/Hugo+walking+frame+GOSH.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4c11e6x85tLHGswLL57HtLjiI4aY_2qyVzJWpROxKmlTOYfkTxoCQCGnyLRymlwT75VNVPL4GVSxyat6urFDU3-wzAGKwIlHfhtXrTobM3TA02RpOHqBx3qUlMx2lbNVLMKfKT0eeoQ/s200/Hugo+walking+frame+GOSH.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After the wheelchair came the walking frame</td></tr>
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Increased risk of infection - The chemotherapy Hugo takes means that he is constantly immunocompromised. He is at an increased risk of infections and should he get one, it would most likely be harder and take longer for him to fight it off. If he gets a temperature, his team act as if it's an infection and he is given antibiotics (either orally or intravenously depending on how low his neutrophils are). Neutrophils are a type of white blood cell. They are the bodies first line of defence against infections. If they are too low (below 0.5) you are considered neutropenic and that risk of infection is greatly increased. Any time Hugo seems a little poorly, even just with a cold, I start to feel nervous at what might be coming. We end up watching him and his temperature very carefully with fingers firmly crossed. Hugo has been relatively lucky in comparison to other leukaemia patients and his infections have been few, but there have been enough of them for me to worry what the next cold will bring.<br />
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We have to be more aware of childhood illnesses such as chicken pox, as these can be incredibly serious for those with reduced immunity. His school notify us of any illnesses doing the rounds so we can keep him away from school if necessary and be on the lookout for any symptoms. It's also much easier for his team to treat him if they know what they are dealing with.<br />
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We avoid softplay and other places where germs are more likely to be lurking. We wash hands, a lot, and I always carry antibacterial gel in an attempt to reduce the risk.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGIRzA0zaA39KZrd4nubAP3MJE-fRQEp2ib_zKQFfdr2HwtTVhhZhaGiRxKVud4RtzFaQqjvjytVtVjSuy5klF9yJHJW5_48MqF3QUEYVJ3ZngGAmMdXC_5qWbeSJfcHUL8tvdKM4Mpg/s1600/Hugo+-+poorly+on+sofa.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGIRzA0zaA39KZrd4nubAP3MJE-fRQEp2ib_zKQFfdr2HwtTVhhZhaGiRxKVud4RtzFaQqjvjytVtVjSuy5klF9yJHJW5_48MqF3QUEYVJ3ZngGAmMdXC_5qWbeSJfcHUL8tvdKM4Mpg/s200/Hugo+-+poorly+on+sofa.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poorly Hugo</td></tr>
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Anaemia - the chemotherapy also effects the red blood cells. If they are too low Hugo becomes anaemic, which he has been. A lot. A normal range is around 110-130. Hugo's generally sit in the 90s or low 100s, even with an iron supplement, but have been as low as 80 (the cutoff for a transfusion being low 70s). Low levels of red blood cells result in tiredness and lack of energy, pallor, breathlessness, feeling cold and lack of appetite.</div>
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Tiredness - probably a more obvious side effect of chemotherapy. Not one that Hugo suffers greatly with, but he definitely doesn't have the stamina his big brother had at his age. He likes his bed and if he's particularly tired, will ask to go to bed early. If we are out, he will ask to get back into the wheelchair or sit quietly with me, even if there is fun to be had. He will often, determinedly, push through (because no child likes to miss out!) and then flake out within minutes of getting into the car.</div>
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Night sweats - these were actually one of Hugo's symptoms at diagnosis, we just didn't recognise it as such. More often that not, Hugo will sweat excessively at some point during the night. His hair, body and sheets will be soaking wet, often resulting in him waking up and a change of bedding. He sweats more during the day than other children too. A largely unknown, but very common side effect, usually worse when he's also taking steroids.<br />
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Sensitivity<br />
Physically - Hugo's skin is more sensitive to the sun, he often breaks out in a 'chemo rash'. His skin can be dry and low platelets means he can bruise more easily. At one point during his treatment he became hyper sensitive to touch. Getting his shoes on was painful, he couldn't manage to have his hair brushed and the slightest knock, drying him after a bath, or even a cuddle could result in tears.<br />
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Emotionally - Hugo can be shy and wary. Whether this is down to the leukaemia or just his personality we will never know, but I can't deny that Hugo has been wrapped up in cottonwool to some extent, that I have been over protective at times, despite my best efforts not to be. Sickness, a broken leg and a period of being unable to walk means he is used to being looked after, both at home and at hospitals and this has undoubtedly had an impact on his behaviour. </div>
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It will be interesting to see the changes in Hugo once he finishes treatment. After 3 years of treatment it's hard to remember Hugo before these side effects hit, and of course he would have changed so much during that time anyway. It's hard to distinguish what is caused by the drugs and what is the leukaemia itself. Maybe there are side effects we won't even be aware of until they fade away. These side effects are tough, but he hasn't lost his spark, he's still Hugo. My hope is that once he finishes treatment, that once he is free from the restraints of these side effects, his spark will continue to grow, that he will flourish and feel a glorious sense of freedom.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-31051261294756876192018-09-06T11:44:00.001+01:002018-09-10T10:46:37.651+01:00What happens next?<div style="text-align: justify;">
During our last appointment at GOSH, our oncology nurse specialist answered the all important question - 'what happens when treatment ends?' I've asked many questions relating to this along the way. Always hesitantly, not wanting to look too far ahead, not wanting to assume we will make it that far. One day at a time, that was always the way to deal with this, but sometimes the practical side of me would come out and I needed to know, I needed a glimpse into the next stage of our lives. Now we are here, now it was time to get the full story.</div>
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So, on Tuesday 18 September Hugo will take his last ever dose of chemotherapy. In the couple of weeks leading up to this date he will have his last IV chemo, his last course of steroids and his last dose of methotrexate (another chemo drug). He will continue to take two non-chemo medications for a few weeks after this, but the 18 September will be the date all chemo stops, his official End of Treatment date. The date we will count from, the date remission starts. The big, bright, light at the end of the tunnel date.</div>
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All being well he will have his port-a-cath (bumpy) removed at GOSH on 7 November, which is when he will ring the end of treatment bell.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWb-3QYV6tIAut8zAz63tDKgbHTmQmqT972T6Dvy_5fqHDZFUvYiG1T4kBeNfs-VY3AhELVgrelG6lh3C3SSx2lSt5DxMpmZu4s4CBK-XV3mjIvj94-GtBeAjsNFGfDjn5tMzL1O2Pjw/s1600/Hugo+bell.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="564" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWb-3QYV6tIAut8zAz63tDKgbHTmQmqT972T6Dvy_5fqHDZFUvYiG1T4kBeNfs-VY3AhELVgrelG6lh3C3SSx2lSt5DxMpmZu4s4CBK-XV3mjIvj94-GtBeAjsNFGfDjn5tMzL1O2Pjw/s200/Hugo+bell.jpg" width="176" /></a></div>
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For the first 6 months he will be seen at the hospital every 4 weeks, as he is now. We will remain under the shared care of our local hospital and GOSH. Many patients get signed over to their local hospital at this point, but given the issues Hugo has had with his walking, GOSH would like to continue to see him (apparently they are quite fascinated by him and curious to see how he gets on!). We will continue attending GOSH every 12 weeks and our local hospital at 4 weekly intervals in-between. This means that to begin with we will be at hospital as regularly as we are now, but after the first 6 months the appointments will reduce to every 8 weeks and then they will gradually decrease over the years, depending on any long term side effects he may or may not be dealing with.</div>
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He will no longer have weekly bloods, but the community nurse will visit once a month while bumpy is still in to flush it, which will reduce the risk of infection and clots. During this time we will have to go to hospital if Hugo gets a temperature as bumpy increases the risk of infection, so I will be keeping that bag packed and ready to go for a while longer.</div>
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It was explained that he may suffer from chemo withdrawal and get dry or sore skin as the huge amounts of chemotherapy he has received gradually leaves his little body. It will take around 6 months for his immune system to build up again and the first winter may be tough in terms of catching bugs and illnesses. We will need to remain cautious of Chicken Pox and he will need the flu jab (not the nasal spray) again this year. After 6 months he will need to have all his childhood immunisations again as the chemotherapy is likely to have wiped them out along with the leukaemia.</div>
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We then spoke about relapse. The ways in which it can come back (bone marrow as before, central nervous system or testicles) and the symptoms we should be concerned about. What is normal and what isn't, and what we should do if we are worried. They hope the treatment Hugo has received is enough, even with the breaks he's had (for illness and to try and improve the walking) but no one really knows, there are no guarantees. It seems so unfair that after all he has been through, all he has endured, that it's not fully over. That this worry will hang over us, probably forever. The fear of relapse has been very real during his treatment and I know it will continue to be the thing that keeps me awake at night.</div>
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So that's the medical bit, what about the rest? For the last 3 years we've had a plan of attack, we've had an enemy to fight. We have been pumping Hugo full of poison to keep him alive. Now, we just stop. We have to trust that it was all enough, to hope that it doesn't come back, that there is no lasting damage. That feels scary. Our much longed for freedom suddenly seems huge and overwhelming. </div>
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This is the moment we have been waiting for, the moment we have been counting down to for so long, but what do we do now? There's no going 'back to normal'. After 3 years, there's no going back full stop. It's exciting, but so many other things too.</div>
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It was an emotional conversation with a wonderful nurse who understands, who told me it's normal to feel this mix of emotions. That it's ok.</div>
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I feel guilty for feeling this way, for feeling anything other than happy. We are the lucky ones, there are hundreds of families who would do anything to swap places with us. Apparently this feeling is normal too. It's all normal, I know it is, but it's frustrating all the same.</div>
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This next chapter is scary and full of yet more unknowns, but it is also exciting and full of possibilities and that's what I have to remember, that's what I have to focus on. There is a new normal to discover, one that isn't clouded by leukaemia. Hugo has been amazing, he has shown us how it is done with his strength and ability to smile through whatever is thrown at him. I know he will continue to be just as amazing and if he can, then so can the rest of us.</div>
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One day at a time has worked pretty well for us so far, so we will continue to do just that. We will write the next chapter, the rest of Hugo's life, one day at a time.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-88876572598331655072018-08-27T09:32:00.000+01:002018-09-06T11:45:02.410+01:00Day in the Life - Medication<div style="text-align: justify;">
I often get asked if Hugo is still on chemotherapy. Has he finished, or is he due another cycle? Treatment for blood cancers can differ from other cancer treatment plans. It is often long, in some cases life long, and I think this can be difficult to comprehend - I know it was for us when we were told his treatment would last for over 3 years. Hopefully this explains a little more about the medication, chemo and otherwise, that Hugo takes for his type of leukaemia (acute lymphoblastic leukaemia).<br />
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During the first 6 months of Hugo's treatment each phase was different. The drugs, the way they were administered, the length of the phase and the side effects all varied. We didn't know what to expect when we started each phase. What effect the drugs might have or what challenges Hugo might face. It was intense, scary and incredibly difficult.</div>
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Life in the final maintenance phase is a little different. Every cycle is the same, or at least they should be. The medication is less intensive. It's not easy, but it is easier. It's more predictable and we can plan a little more. We have slowly got used to the regular side effects and Hugo's medication is now a very familiar part of our family life.</div>
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As you would expect, Hugo is on a wide range of medication. What is possibly unexpected is that it's not all chemotherapy. There are a number of other medicines. Some deal with the side effects of the chemotherapy, others are supportive, while some are proven to improve the chances of riding his body of cancer. Some are introduced as and when needed, while others are constant. Every child who is being treated for leukaemia will have a slightly different list of medication, depending on the side effects they experience, whether they are on a trial, their age etc.</div>
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All of the medication Hugo takes at home is given orally through a syringe. An average day of drug taking for Hugo, during the maintenance phase, looks a little like this</div>
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AM</div>
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Septrin - this is taken just on Mondays and Tuesdays. It's an antibiotic which helps to prevent and treat pneumonia, which Hugo is more at risk of contracting because of his weakened immune system. It smells and tastes of banana, which sounds nice, but Hugo doesn't particularly like this one.</div>
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Gabapentin - this one helps with neuropathic pain - the nerve pain and muscle weakness that is caused by the other medication he takes. Apparently this one doesn't really taste of anything so Hugo doesn't mind this one. </div>
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Sytron - this is an iron supplement. Every few months Hugo's iron levels drop and he has to take a supplement. It's bright red and doesn't taste very nice. Hugo tends to take this one first to get it out of the way.</div>
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Dexamethasone - once every 4 weeks Hugo takes a 5 day course of steroids. So if it's steroid week, this one is added to the list. It smells and tastes of mint and is probably his favourite one taste wise - not so much side effect wise!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNRGFjvat7B76u8e7Oxeqh7iHM2HMuA28KF_LvDZmMjsdiZNC5HR6XR5yVxS1VQtPH1WVHWs_VbW9NQNOZtm6-cJg_ta-j_99OeYYn1m7bUajMu96Bhc7RM0zHx_Kb7CbtUgK0UTGSlg/s1600/Hugo+-+weetabix+and+medicine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNRGFjvat7B76u8e7Oxeqh7iHM2HMuA28KF_LvDZmMjsdiZNC5HR6XR5yVxS1VQtPH1WVHWs_VbW9NQNOZtm6-cJg_ta-j_99OeYYn1m7bUajMu96Bhc7RM0zHx_Kb7CbtUgK0UTGSlg/s200/Hugo+-+weetabix+and+medicine.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Weetabix with a side of medicine</td></tr>
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LUNCH TIME</div>
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Gabapentin and Sytron again.</div>
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PM</div>
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Septrin, Gabapentin, Sytron and Dexamethosone (if it's steroid week) again.</div>
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Methotrexate - this is a chemotherapy drug taken once a week, in our case on a Friday evening. It's bright yellow and apparently tastes horrible. It is the one that Hugo struggles the most with and it can take him a little while to build up to taking it. He usually gets a little treat to 'help take the taste away'.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNknep0Mk3MQu8gO0BflVDPP1otuiSh3XLTAH4DLVu9j-IssM8RthjNphOIwg-N-9Uzv0L8beT9qHUiGRIc0vWgGAAur4QXPtXb01Ut2L_6AMKe7bKYjeXQFn9WGzAN5SgBoMP-xReAA/s1600/Hugo+-+mtx+with+haribo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNknep0Mk3MQu8gO0BflVDPP1otuiSh3XLTAH4DLVu9j-IssM8RthjNphOIwg-N-9Uzv0L8beT9qHUiGRIc0vWgGAAur4QXPtXb01Ut2L_6AMKe7bKYjeXQFn9WGzAN5SgBoMP-xReAA/s200/Hugo+-+mtx+with+haribo.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The dreaded methotrexate</td></tr>
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Mercaptopurine - this is the only chemotherapy drug that Hugo takes daily. It has to be taken on an empty stomach, so no food an hour before or an hour after, including milk. We give this one to Hugo about an hour after he has gone to bed because of the food limitations - Hugo is too much of a milk monster to manage 2 hours without it during the day. He now takes it while half asleep and doesn't really know he has it. It is pink and raspberry flavoured. I suspect it doesn't taste very nice. This is also the drug that caused his liver problem, which is a pain, given that it's his main chemotherapy drug. When Hugo comes to the end of treatment, this will be the last chemotherapy drug he, hopefully, ever takes.</div>
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Methotrexate and Mercaptopurine come under the family of cytotoxic drugs which means we need to wear protective gloves to administer them because of their level of toxicity.</div>
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Once every 4 weeks, alongside the steroids, Hugo has Vincristine - an IV chemotherapy given at the hospital. This is the only drug Hugo has regularly that is not taken orally. It goes in through his wiggly and takes all of about 5 minutes.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEss-1HraaQqJNrtZSLE-na9dW9pcHqEtNGfoTCW_i5K4oe7l7PBLOqRbqFtkzpiYXUAM2rT8qrQ0-Dei7QOQEQS4bjn6TYkGldSs2ASA6VQfP56gQRLbyuBne39374sgkRG-2q05sTQ/s1600/Hugo+vinc+going+in.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="460" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEss-1HraaQqJNrtZSLE-na9dW9pcHqEtNGfoTCW_i5K4oe7l7PBLOqRbqFtkzpiYXUAM2rT8qrQ0-Dei7QOQEQS4bjn6TYkGldSs2ASA6VQfP56gQRLbyuBne39374sgkRG-2q05sTQ/s200/Hugo+vinc+going+in.jpg" width="143" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vincristine going in via wiggly</td></tr>
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At any given time, Hugo may also be on additional medication. He's had numerous courses of antibiotics, both intravenously and orally, for suspected infections. He's also had courses of vitamin D, medication to help repair his liver, eye drops, creams for various sore bits, and various other drugs to help with the complications of his condition or the side effects of the chemotherapy.</div>
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All this means that on a Monday, during steroid week, he will take around 11 doses of medication during the day. On another day, on a non-steroid week, it's 'only' 7 doses. We get through a lot of medication, syringes and blue gloves.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3pEt1INRXEv_LtTm6qxE9HyTma4Fhbv27jMyYlyDjgK0EKW57XMYrI1fpbg0hNbOVTvshJiTq6ik-2V-XSFX7EwuVBi82Owf8MvI_-7wa4Emizae6EROsYD3Ux_NOvipsQfX2Rg7yzw/s1600/Hugo+medication+garage.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3pEt1INRXEv_LtTm6qxE9HyTma4Fhbv27jMyYlyDjgK0EKW57XMYrI1fpbg0hNbOVTvshJiTq6ik-2V-XSFX7EwuVBi82Owf8MvI_-7wa4Emizae6EROsYD3Ux_NOvipsQfX2Rg7yzw/s200/Hugo+medication+garage.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our medical shelf in the garage!</td></tr>
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Luckily Hugo has always taken his medication fairly happily. I find it a little sad that he doesn't question it, that it is just an acceptable part of his life, but I am also thankful that it is not a harder process, as I know it is for many others.</div>
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So, he's not hooked up to IV lines for hours. The medication doses are no longer at a high enough level that they cause his hair to fall out, or for him to be sick, or any of the other side effects that are so synonymous with cancer treatment. However we are, on a daily basis, giving him medications that are toxic with nasty side effects. </div>
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But they are also saving his life, teaching his bone marrow how to produce white blood cells properly and reducing the risk of the leukaemia coming back. There's not a question over whether to take them or not. It's frustrating that the very drugs that are saving his life are also doing him harm, but his life is our priority. Getting him through the leukaemia is our focus.</div>
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One day there won't be a box of medication in one of our kitchen cupboards and a stash of medical supplies in the garage. His breakfast won't be accompanied by a pile of syringes full of medicine and the side effects that come with them. We won't have to remember to pack bottles of medicines when we go out for the day or on holiday. But for now this is how it is.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-30412382901651866312018-08-21T20:34:00.000+01:002018-08-27T09:32:39.477+01:00Day in the Life - Bloods<div style="text-align: justify;">
Once a week a community nurse comes to our house to take some blood from Hugo via his bumpy. This blood is then sent to the lab and later that day, or the following day, we get a phone call with the results, which I write in our blue folder.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5GBG5iwyeokAR7fPNOhMKIvt3S1kOWtGiqK-evelRXy_flZ-mQYj7rRvFoejpJyCS3nO9TyerlW2M0i6zHhuqHN3ocU1YJbxbfQAK-c2de9uBW6M7SC97srGKD0OPRHjZG4KR-vHEg/s1600/Hugo+blue+folder+bloods.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5GBG5iwyeokAR7fPNOhMKIvt3S1kOWtGiqK-evelRXy_flZ-mQYj7rRvFoejpJyCS3nO9TyerlW2M0i6zHhuqHN3ocU1YJbxbfQAK-c2de9uBW6M7SC97srGKD0OPRHjZG4KR-vHEg/s200/Hugo+blue+folder+bloods.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our weekly record of Hugo's blood results</td></tr>
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It is these results that determine the dosage of his chemo for the following week. The idea is to keep his bloods within a certain range so that his bone marrow learns how to work properly again. The results would also alert his team to any potential problems, from possible relapse to low iron levels. As well as the standard full blood count, Hugo's liver function, ferritin levels, vitamin D levels and chemotherapy absorption are also regularly tested.</div>
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The first step in the weekly bloods is putting the numbing cream on with a clear sticker over the top.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghZhhbnzzHzPdSa5lXWg4w_4Be7l8Y_VGWo44DSbvDlndwhkhf6JQx8iiiRtUvJ8rG50PNooRBt5PsJnHJINOekn6fmQD-XCZIo5a7s8ncwqd_nrWnAySP7SEPgOvYFOvFn6__Av6tAg/s1600/Hugo+cream+on+bumpy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghZhhbnzzHzPdSa5lXWg4w_4Be7l8Y_VGWo44DSbvDlndwhkhf6JQx8iiiRtUvJ8rG50PNooRBt5PsJnHJINOekn6fmQD-XCZIo5a7s8ncwqd_nrWnAySP7SEPgOvYFOvFn6__Av6tAg/s200/Hugo+cream+on+bumpy.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">cream on and ready to go</td></tr>
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This has to go on an hour before the nurse is due to arrive. This allows pain free access to bumpy. Bumpy is actually a port-a-cath or central line, which sits just under Hugo's skin and was inserted shortly after he was diagnosed. It links up to a large vein near his heart allowing for direct access and easier blood taking.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8wcabd5JyZNosPJFPl043u-cKGd5fcF_HZnInKR-NKyGutlMf8KV3oFmLUkBTEsDQE6BUPhDxZGicqdW7saVmaFihM2-GuaOlAviSKGK9xmdPyB1z9769-GjkmBjujj1kh54KaIqE8g/s1600/Hugo+-+port.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8wcabd5JyZNosPJFPl043u-cKGd5fcF_HZnInKR-NKyGutlMf8KV3oFmLUkBTEsDQE6BUPhDxZGicqdW7saVmaFihM2-GuaOlAviSKGK9xmdPyB1z9769-GjkmBjujj1kh54KaIqE8g/s200/Hugo+-+port.JPG" width="200" /></a></div>
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When the nurse arrives she prepares her tray full of syringes, flushes, antiseptic, blood bottles etc. Then Hugo strips off his top layer, we remove the cream and the nurse gets to work. Hugo likes to sit on my or his dad's lap for this part and over time we have developed the best position for giving the nurse good access and also for good blood flow. She cleans the area, inserts wiggly, flushes the line to clean it, gets the blood, flushes again to clean and prevent blood clots, then takes wiggly out.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4FGGLBOcL0S3WHu0bLM9OcB86aeSG0EciFBXEjm8RardizVUq6Wkt7RpV4VSyGhKJYkRtUFOTr827DFbmSK15g77txlFPFj-NJLI1Pd1Db2S63UMcF78lgCjSm2X4beBOkTULgjAQnQ/s1600/Hugo+-+bloods+being+taken+at+home.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="430" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4FGGLBOcL0S3WHu0bLM9OcB86aeSG0EciFBXEjm8RardizVUq6Wkt7RpV4VSyGhKJYkRtUFOTr827DFbmSK15g77txlFPFj-NJLI1Pd1Db2S63UMcF78lgCjSm2X4beBOkTULgjAQnQ/s200/Hugo+-+bloods+being+taken+at+home.jpg" width="134" /></a></div>
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Wiggly is a small needle with a tube attached to it. Once in place it can be used to take blood, as in this case, and also to give blood, platelets and chemotherapy. Sometimes wiggly gets left in, if we have a hospital appointment for chemotherapy the next day for example, but most of the time it gets removed after blood has been taken.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq3rrGpm6MB9GCP3qeFSYR-FnkTUMVwCw6S5BVkmksHxDZrSSOhsIelTXGMZS3hfpyiwVPJeWatJNJ9hZqU4bsbauG-WcmSFVRfv6Uszw8JYgtPkQH0MtjrseE2RpLH_GHhuW-ON_QxQ/s1600/Hugo+-+wiggly+accessed.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq3rrGpm6MB9GCP3qeFSYR-FnkTUMVwCw6S5BVkmksHxDZrSSOhsIelTXGMZS3hfpyiwVPJeWatJNJ9hZqU4bsbauG-WcmSFVRfv6Uszw8JYgtPkQH0MtjrseE2RpLH_GHhuW-ON_QxQ/s200/Hugo+-+wiggly+accessed.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIZILfwRFAptCChYYxw-34Ekm34wDNDrF0dYZORDCcmDnU8UJgi-VF5HvF4RaThvRT3zG807YTrbIZ_jNsWtukzPpOzoqqZnwAoQjc5l-Uy9MDPK2sQjJ_AEZnvJmz1Amdmu5NqjjIZw/s1600/Hugo+-+wiggly+in.jpg" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIZILfwRFAptCChYYxw-34Ekm34wDNDrF0dYZORDCcmDnU8UJgi-VF5HvF4RaThvRT3zG807YTrbIZ_jNsWtukzPpOzoqqZnwAoQjc5l-Uy9MDPK2sQjJ_AEZnvJmz1Amdmu5NqjjIZw/s200/Hugo+-+wiggly+in.jpg" width="150" /></a></div>
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Hugo is generally very good and doesn't make a fuss. Sometimes I think he's just not in the mood for it and gets a bit fidgety or uncooperative, but who can blame him really. The worst bit for him is the antiseptic wipe because it's cold on his skin. Of course sometimes wiggly doesn't work and Hugo has to flap his arms or change position while we say 'come on the good stuff'. On occasions the nurse has had to take it out and start again, or we've ended up at our local hospital for some wiggly unblocker. If all is straight forward, the visits take about 30 minutes.</div>
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Every so often visits are more frequent than once a week. Sometimes the blood can clot between our house and the lab so the nurse needs to come back and do them again. There have been times when Hugo has been poorly, or one or other of the results seems strange, and they need to be done again a day or two later. In-between visits we are kept busy completing repeat prescription forms and trips to the doctors and chemist to keep our box of supplies full.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy7sSWOzD2hcJpJMbJiXZcu3VFlgOKNfu6JyFSiagfaBMubqfPtxcliHbARKsCJF4RXWUxjiwLZZxEdHCQ9vT7grywTnKWukwjP3HZPipbE9Jt8i6ooK7gnKyVwonl2pY6DMoxyBXlyA/s1600/Hugo+medication+garage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy7sSWOzD2hcJpJMbJiXZcu3VFlgOKNfu6JyFSiagfaBMubqfPtxcliHbARKsCJF4RXWUxjiwLZZxEdHCQ9vT7grywTnKWukwjP3HZPipbE9Jt8i6ooK7gnKyVwonl2pY6DMoxyBXlyA/s200/Hugo+medication+garage.jpg" width="200" /></a></div>
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Weekly bloods have become part of our routine now, another part of his treatment that Hugo just accepts. The team of nurses have become familiar and friendly faces on this journey with their kind understanding for me and stickers for Hugo. It's another aspect of our life we have learnt to work around, to squeeze in and give importance to. We have to remember them when it comes to holidays or after school activities. It's not a huge inconvenience, but it is every single week and I'm pretty sure there are other things we would all rather be doing!</div>
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It will be nice when they are no longer part of our life, but the thought is also scary. These bloods and his general well being are all we have to go on to know if the chemotherapy is working, that nothing is wrong, that it's not coming back. It's difficult not too obsess slightly over them. I spend far too much time looking through the results in our blue folder, trying to see patterns, to be on the look out for anything strange, to be prepared for an infection, or worse. Generally there is no pattern, other than the week after steroids, when his counts always go up (which is perfectly normal). The thought of not having that safety net is a little concerning, but that's my worry to live with, I know Hugo will just be pleased not to be jabbed with a needle every week!</div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-48977039350428538372018-08-12T16:13:00.001+01:002018-08-21T20:35:05.367+01:00Day in the Life - Steroids<div style="text-align: justify;">
Hugo encounters many different side effects from both the leukaemia and the medication he takes for it, but on a day to day basis, steroids are definitely the cause of the most challenging (which is why they get a blog all to themselves!). He takes a 5 day course every 4 weeks, alongside the IV chemotherapy (together they are referred to as 'pulses'). The effects differ slightly each time and we never know quite what we are going to get from month to month. Some months they seem to hit harder and others we feel we have gotten off lightly.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivfCRoqkFQ3vRUr_IBVWFmT3PRyl6ABOMLooQqj5-r7bjKkbnKtkaph3pKuSCdQ-LMorBxFQUFEPKDeTXegT9mt3ROaHV9n_AcNBMyFOCfif0jCTZpA5eYs3XQV9ycw1Dr_O3vlWq8-Q/s1600/Hugo+warning+child+on+steroids.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivfCRoqkFQ3vRUr_IBVWFmT3PRyl6ABOMLooQqj5-r7bjKkbnKtkaph3pKuSCdQ-LMorBxFQUFEPKDeTXegT9mt3ROaHV9n_AcNBMyFOCfif0jCTZpA5eYs3XQV9ycw1Dr_O3vlWq8-Q/s200/Hugo+warning+child+on+steroids.jpg" width="200" /></a></div>
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I know they effect different children in a variety of ways, but for Hugo the most common effects are tiredness and sensitivity. Sometimes he is angry and, heartbreakingly, sometimes he is sad. He is often irritable and the slightest thing will upset him, either putting him in a mega strop or causing him to burst into tears. His moods swing and change like the flick of a switch and they all seem to be magnified, often we feel like we are walking on eggshells afraid to upset him.<br />
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We spend much of steroid week cuddling. He likes to sit on a lap and play with someones hair. Sometimes he falls asleep in the middle of the day, other times he is hyper and full of energy. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCveEdB0y3aZb4RCIKWRwRlZ-c5-qTwRWnmLJfI7GuUp04T9YG4EctNJgDRfQqAZJ1F5FHbhzInfugDFArovrHYl3aW64nPlGs5t1jZaMM8Aw-9yFKX4f7yxJ5m6mQxBUTC5NpVJIzTw/s1600/Hugo+steroids+with+me.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="412" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCveEdB0y3aZb4RCIKWRwRlZ-c5-qTwRWnmLJfI7GuUp04T9YG4EctNJgDRfQqAZJ1F5FHbhzInfugDFArovrHYl3aW64nPlGs5t1jZaMM8Aw-9yFKX4f7yxJ5m6mQxBUTC5NpVJIzTw/s200/Hugo+steroids+with+me.jpg" width="128" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Sometimes only a cuddle with<br />
mummy (and bunny) will do</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-YnQyLhn8buxYnZ1H0nnYkZsHPm6fdWwQDIgJSU3wA7Nckln3zyc-gAG7fO8dpM6imBk39Siz5mGu9KfCzTfJJUfoiUD_-jEh25zSRq2cGQgYdYa0RB2hiS4OCQIbj-oN21JzAngabA/s1600/Hugo+steroids+asleep.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-YnQyLhn8buxYnZ1H0nnYkZsHPm6fdWwQDIgJSU3wA7Nckln3zyc-gAG7fO8dpM6imBk39Siz5mGu9KfCzTfJJUfoiUD_-jEh25zSRq2cGQgYdYa0RB2hiS4OCQIbj-oN21JzAngabA/s200/Hugo+steroids+asleep.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">'Watching' a film!</td></tr>
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In addition to the moods they also cause insomnia, so despite being tired, he often can't sleep, or sometimes he just needs a cuddle at 4am. They also increase his urine output, so if it's not a cuddle, then it's a trip to the toilet. They can mess around with blood sugar levels too, so we have to make sure we always have a snack to hand - sometimes that's at 4am too! Leukaemia patients often suffer with night sweats and these seem to increase with the steroids too. It's quite common for Hugo, and his bedding, to end up drenched during the night.</div>
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They also have an impact on his physical appearance. The water retention can make him look puffy and they cause him to carry weight in his cheeks and on his tummy. It is quite common for children on steroids to have very round faces, and I can now often recognise this with the children at the hospital. It will be interesting to see the changes in him once he finishes treatment.<br />
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Generally we find that keeping busy and distraction help, within reason. If it's too busy then the tiredness becomes too much for him. However there are certain things we avoid during steroid week. Birthday parties are not much fun and we have learnt the hard way that we should book any holidays outside of steroid week!</div>
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The only positive effect is that they often give his appetite a boost towards the end of the course. He eats more and is often more willing to try different foods. Unfortunately this is often accompanied by upset when we have run out of the particular food his tastebuds have decided to obsess upon that month. Or he is hungry, but can't decide what he wants and instead wanders around the kitchen opening cupboards in the hopes of finding something that takes his fancy. Emergency dashes to Tesco are fairly common during steroid week. However, the upset is worth it to see Hugo tucking into platefuls of food. We spend the rest of the month desperately trying to get him to eat, so to see him eating well is fantastic.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCQP2jbvuXTUAcH2J1Bx9D5-KyFZIpPf4xIwPhwR8w7q8IdRy7ld-f_nMyAUGgtWaGbPlv6I_o8G6psqxWKNT65Aw2o3ElfZiWiTKPqZrAZBxHh24BAlJLesCLf8VHXg7OKDQaE5Offg/s1600/Hugo+steriod+food.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCQP2jbvuXTUAcH2J1Bx9D5-KyFZIpPf4xIwPhwR8w7q8IdRy7ld-f_nMyAUGgtWaGbPlv6I_o8G6psqxWKNT65Aw2o3ElfZiWiTKPqZrAZBxHh24BAlJLesCLf8VHXg7OKDQaE5Offg/s200/Hugo+steriod+food.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hugo tucking into his 3rd portion of rice at 10.30am!</td></tr>
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I suspect he finds much of steroid week confusing. He's too young to articulate how he is feeling and I imagine most of the feelings are alien to a young, fun loving 5 year old. We all take a deep breath at the beginning of steroid week. It's a tough few days for all of us, we are invariable exhausted from coping with his moods and tired from the lack of sleep. The toughest part though is undoubtedly seeing Hugo sad. Knowing he doesn't understand his feelings. Thankfully it is only a few days each month, but it's not right. It's not how it should be. We will not miss steroids!</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com2tag:blogger.com,1999:blog-2255856208825375078.post-3985315896681706752018-08-09T20:45:00.002+01:002018-08-12T16:13:59.935+01:00Day in the Life - Hospitals<div style="text-align: justify;">
Hugo started the maintenance phase of his treatment plan in January 2016. It's the final phase of treatment and is made up of 12 cycles, each of which are 12 weeks long. However, each 4 week block is the same so we tend to count in months rather than cycles.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJY2kafMJChgbSrua919JTkJtWxK8G5bBLjDDwDoxgo15zohO123hmSH-T1gb0tJFXo8FmI2NMw7XiyksXFfxtl1Pm1O58ROj64doTvEP8lt9t6LzIkLO2gfDdArGkQXgxuzR9hLlgfQ/s1600/Hugo+Maintenance.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJY2kafMJChgbSrua919JTkJtWxK8G5bBLjDDwDoxgo15zohO123hmSH-T1gb0tJFXo8FmI2NMw7XiyksXFfxtl1Pm1O58ROj64doTvEP8lt9t6LzIkLO2gfDdArGkQXgxuzR9hLlgfQ/s200/Hugo+Maintenance.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating the start of the maintenance phase</td></tr>
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At the start of every 12 weeks we go to GOSH. 4 weeks and 8 weeks later we go to our local hospital instead. These are actually our only scheduled hospital appointments, but of course we've ended up with far more than that.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiisL6XZiH5uen4Fqdt8AQPMZ1PZWjAsEcdL6IRV9JlwTZQ6NuCIX7Zhhklhglk9nLSoUtM2aC6_l7fyd0dvFoO47ewYQxJY33TSoGgbYzqF_kfB7ixhDZGVOHtbWW_UtauSGywbl__wA/s1600/Hugo+-+outside+GOSH.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiisL6XZiH5uen4Fqdt8AQPMZ1PZWjAsEcdL6IRV9JlwTZQ6NuCIX7Zhhklhglk9nLSoUtM2aC6_l7fyd0dvFoO47ewYQxJY33TSoGgbYzqF_kfB7ixhDZGVOHtbWW_UtauSGywbl__wA/s200/Hugo+-+outside+GOSH.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Outside GOSH with bunny</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho3nL4mu-zA6Q6770LE12CJvGK-YzSUzNlAIHc9dciUvatHFuC62NcIRq1EG-wP10QdwboWaf57yBpxgBCGAx61jTNJxPF-ulpa8XgsAGMJ8v7ikcx-mHclFTrEAjVq7Xjr_gWYfIOqw/s1600/Hugo+outside+PA+with+Henry.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho3nL4mu-zA6Q6770LE12CJvGK-YzSUzNlAIHc9dciUvatHFuC62NcIRq1EG-wP10QdwboWaf57yBpxgBCGAx61jTNJxPF-ulpa8XgsAGMJ8v7ikcx-mHclFTrEAjVq7Xjr_gWYfIOqw/s200/Hugo+outside+PA+with+Henry.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our local hospital with some company!</td></tr>
</tbody></table>
<div style="text-align: justify;">
Each appointment starts with obs - temperature, blood pressure, heart rate, height and weight. At the beginning of treatment Hugo would cry everytime his blood pressure was taken. Now, after nearly 3 years he doesn't cry, but he still likes to hold my hand, which is just fine with me. He knows exactly where everything goes, he helps the nurses and generally just lets them get on with it. Another part of treatment that has become second nature to him.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi6d9p0lDAkykZvtQ21BW2l3AAslWNr9yfsG3NbVsv_0QFMzd-TA1i4Ejhc1bGgki2r_UkTYl2NfauAuiqc5lugL8sBBkw3otOvlhtArfW-1PkjJjVnMzi6SiPG84703WFp9qfQZJVuQ/s1600/Hugo+-+obs+with+Lucy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi6d9p0lDAkykZvtQ21BW2l3AAslWNr9yfsG3NbVsv_0QFMzd-TA1i4Ejhc1bGgki2r_UkTYl2NfauAuiqc5lugL8sBBkw3otOvlhtArfW-1PkjJjVnMzi6SiPG84703WFp9qfQZJVuQ/s200/Hugo+-+obs+with+Lucy.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When having your blood pressure <br />
taken gets in the way of playing!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6OadKNyv42QvLGg6t9UWNxE8VsfsBEx7erVR085tKBs_Rpo5HDDAbNLSQrETSiCxLoQAb_VgF1OaVVN_PDyN6EvpNiLdA079M096abv1PP-YPDMqgIC2NWCF98prq-UbpI-PZrWBmMw/s1600/Hugo+being+measured.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6OadKNyv42QvLGg6t9UWNxE8VsfsBEx7erVR085tKBs_Rpo5HDDAbNLSQrETSiCxLoQAb_VgF1OaVVN_PDyN6EvpNiLdA079M096abv1PP-YPDMqgIC2NWCF98prq-UbpI-PZrWBmMw/s200/Hugo+being+measured.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting very tall!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx1JQUIncgDcms9nPP14xNRZY04WSwqeGDkVOmtOKLse_1vmza8w6gU9CMpNTbdVOZFCaKdEaSNHREuRhviDiUbSf9KDpK4thZUu8dFOTcj8TNyg4mh1bVNBA8c3kyXENPkNm8O1gutQ/s1600/Hugo+-+obs+being+done+with+Henry.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx1JQUIncgDcms9nPP14xNRZY04WSwqeGDkVOmtOKLse_1vmza8w6gU9CMpNTbdVOZFCaKdEaSNHREuRhviDiUbSf9KDpK4thZUu8dFOTcj8TNyg4mh1bVNBA8c3kyXENPkNm8O1gutQ/s200/Hugo+-+obs+being+done+with+Henry.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A bit of company and a different hand to hold</td></tr>
</tbody></table>
<div style="text-align: justify;">
The main reason for these appointments is to administer a chemotherapy called Vincristine which has to be done intravenously. They also check Hugo over and it's our opportunity to ask questions and go over any concerns we or his team have - I usually have a list! Sometimes he needs to be reviewed by the physio, or it's decided he needs an extra test or scan. We also pick up a big bag of medication for the next cycle of treatment.</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjpxCQNa-f4akGo4Azxafrw5P8IjPu0JSgXBLS_GqgFxQc4yUpvYXk9rkjbKxOo2l8p1VP9KfS1ibMi29hXimnzCieDGqVIAfuyLrpngX6C2mgd1-RY5u8R5NoDvA7gfaFsWua2OT_zQ/s1600/Hugo+vinc+going+in.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="460" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjpxCQNa-f4akGo4Azxafrw5P8IjPu0JSgXBLS_GqgFxQc4yUpvYXk9rkjbKxOo2l8p1VP9KfS1ibMi29hXimnzCieDGqVIAfuyLrpngX6C2mgd1-RY5u8R5NoDvA7gfaFsWua2OT_zQ/s200/Hugo+vinc+going+in.jpg" width="143" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vincristine going in</td></tr>
</tbody></table>
<div style="text-align: justify;">
In addition to these 4 weekly appointments, we have had lots of extra ones for additional tests. There have been bone density scans, a nerve conduction test, x-rays, a heart scan, moulds for in-soles and an MRI scan. We have also had sessions with the physio, the psychology team and at the hydrotherapy pool.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZjdogJ7S8XMfDM8BRwNMwOn5xrZmkfuuPDmPjx07LaDCTrOtSoM-k5RMnMjj8V9yV9g44ZxLf3nnqTo1xrBUd2Cf8nA59-l4ZWIKgRKa5ATX-Y0WtybPANQLIz9Vs0ew3Aj0B-X02g/s1600/Hugo+nerve+conduction.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZjdogJ7S8XMfDM8BRwNMwOn5xrZmkfuuPDmPjx07LaDCTrOtSoM-k5RMnMjj8V9yV9g44ZxLf3nnqTo1xrBUd2Cf8nA59-l4ZWIKgRKa5ATX-Y0WtybPANQLIz9Vs0ew3Aj0B-X02g/s200/Hugo+nerve+conduction.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The nerve conduction test - before it got painful</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimJC_30ruhnLKJUL0S4HooDHNkuBVphxwu26SGPgpXD5WsCqVEIc5GNecyUNPQsUFnSitI8HgiX7X-gEY1ylocp11IT5iWDpjbr-4xt1mZiuC2pv_R_hWct6JcbM7yGpvwRhWIssLyuA/s1600/Hugo+bone+scan.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimJC_30ruhnLKJUL0S4HooDHNkuBVphxwu26SGPgpXD5WsCqVEIc5GNecyUNPQsUFnSitI8HgiX7X-gEY1ylocp11IT5iWDpjbr-4xt1mZiuC2pv_R_hWct6JcbM7yGpvwRhWIssLyuA/s200/Hugo+bone+scan.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bone density scan</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigCanKw__pUdgY9iIwaw1AE3dDrQAkX2YgLjDOs9pWfkXGlcghg-ZxO_HNbOHd08iqkQ5rQoIyM_DdG4wWepT5I2hWUrQa9ua8vPXmEOojjZlCMmRdHhGx6kkVeDBDpZOBxgWHdXDT8w/s1600/Hugo+physio+bars.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigCanKw__pUdgY9iIwaw1AE3dDrQAkX2YgLjDOs9pWfkXGlcghg-ZxO_HNbOHd08iqkQ5rQoIyM_DdG4wWepT5I2hWUrQa9ua8vPXmEOojjZlCMmRdHhGx6kkVeDBDpZOBxgWHdXDT8w/s200/Hugo+physio+bars.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Physio</td></tr>
</tbody></table>
<div style="text-align: justify;">
There have been plenty of unscheduled trips and stays too. Anytime Hugo gets a temperature we have to dash off to hospital so he can be assessed for further signs of infection and have bloods taken. We then cross our fingers that we escape with oral antibiotics, rather than IV ones which need a 48 hour stay. We've needed wiggly unblocker and strange blood results investigated. There have been rashes, limps and gunky eyes that have needed to be looked at and there's been a broken leg. Any sign of illness has to be checked out because he is immunocompromised so the simplest of things can develop and become serious very quickly. We have also had week long stays for pneumonia and liver failure. </div>
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<div style="text-align: justify;">
There are probably many others too that have faded in my memory or blurred with others. We always have a bag packed ready to go, just in case. Every cough, cold, rash, or strange symptom has me on alert expecting a possible trip to hospital.<br />
<br />
Hugo has spent a great deal of his childhood at hospital. Visits are an inconvenient necessity, they are time consuming and there is always a lot of waiting around, despite the best efforts of the staff. We have to make arrangements for Henry and make sure he doesn't feel left out - because when you are 9 it seems unfair that your brother gets a day off school, even if it is for chemotherapy!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Luckily Hugo treats each trip to hospital as a fun day out, especially now he gets to miss school, and it's a credit to our hospitals and wonderful NHS that he feels this way. There are play rooms and wonderful play specialists making these visits easier and the time go by a little quicker. The nurses are kind and patient and have gotten to know our little man and how he likes things done. </div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8OCWoTZG3hc-H7AWiR86w1zfHpjXWtbORvmVR5bVkVNo37TOcQG9fDtzrJFv8RIWm-0XVTYrrqAs0LKiY-hmVYzwlHcfBQsUkumBTM5HKttwxMDNBW1pZKBA5_D1OQ8AESVUonTiaCg/s1600/Hugo+at+GOSH+watching+TV.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8OCWoTZG3hc-H7AWiR86w1zfHpjXWtbORvmVR5bVkVNo37TOcQG9fDtzrJFv8RIWm-0XVTYrrqAs0LKiY-hmVYzwlHcfBQsUkumBTM5HKttwxMDNBW1pZKBA5_D1OQ8AESVUonTiaCg/s200/Hugo+at+GOSH+watching+TV.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank goodness for the TV!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjITQCF7b_FsvRznp8Rdg7tQs9vTRIXOf0cmn9jSOHzAPgv0hUgOXf7a1ORNCtD24M_B8s97B4YVdecAO_2i0RIZNYdiV3L1DcoHq8bZDr7V-IjC4VT11U1IOPOIOkqy6qtojG_2L2c-w/s1600/Hugo+PA+playing+on+bed.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjITQCF7b_FsvRznp8Rdg7tQs9vTRIXOf0cmn9jSOHzAPgv0hUgOXf7a1ORNCtD24M_B8s97B4YVdecAO_2i0RIZNYdiV3L1DcoHq8bZDr7V-IjC4VT11U1IOPOIOkqy6qtojG_2L2c-w/s200/Hugo+PA+playing+on+bed.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sometimes we're not allowed in the playroom <br />
because of risk of infection so the toys have to come to us</td></tr>
</tbody></table>
<div style="text-align: justify;">
Although sometimes understandably wary, he is generally comfortable around doctors and nurses and within a hospital environment. He plays at being a doctor with his cuddly toys and has developed a very caring and considerate bedside manner.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwSCPodIaSI_wujL7pd3mGFYk3YpUd1ktwiaI90kEA95c1LxvVejYWtydS_0Kctd_FVghNJYRbJkMuBhbiaUvBkHb7g7PlU2-kGxPWNWLAfCzGjuv4ex4mmCW7KjdzuDRblQJQK8_OvA/s1600/hugoBunny.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwSCPodIaSI_wujL7pd3mGFYk3YpUd1ktwiaI90kEA95c1LxvVejYWtydS_0Kctd_FVghNJYRbJkMuBhbiaUvBkHb7g7PlU2-kGxPWNWLAfCzGjuv4ex4mmCW7KjdzuDRblQJQK8_OvA/s200/hugoBunny.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking Bunny's obs</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSV3TxPLrMr8aNEonnaMrhKXHSoyHhzQfMzd3tH3hgB3Xyl8xlxLkEX-Dh5PCnQTU7Bdyj7Ol46dAx6WZVC_ikn9F2c83oEos15iproZl5sXXh85CT9Bl244pOyW66AWUldxcPhxk6Gw/s1600/Hugo+doctor.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSV3TxPLrMr8aNEonnaMrhKXHSoyHhzQfMzd3tH3hgB3Xyl8xlxLkEX-Dh5PCnQTU7Bdyj7Ol46dAx6WZVC_ikn9F2c83oEos15iproZl5sXXh85CT9Bl244pOyW66AWUldxcPhxk6Gw/s200/Hugo+doctor.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr Hugo<br />
<br /></td></tr>
</tbody></table>
<div style="text-align: justify;">
I sometimes wonder if his shy and sensitive nature has developed because of all the prodding and poking by strangers, because of all the times people had to hurt him, even with the best of intentions. He's spent a great deal of time in a world that most people visit only briefly. At the end of treatment our visits will be fewer, but they will continue for quite some time. I hope there are positives to be taken from this world. That he has learnt sensitivity and empathy, rather than fear and distrust and that it will continue to be a fun day out for him in the years to come.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-55277941801027677582018-06-20T18:49:00.001+01:002018-08-09T20:46:20.826+01:00Broken Pieces<div style="text-align: justify;">
A couple of weeks ago I found myself at our local hospital. Not a particularly unusual occurrence given Hugo's situation. However this time I wasn't there for Hugo, I was there for me. I'd been to the doctors that morning having felt ill for nearly a week. He was concerned by some of my symptoms and sent me to A&E. A blood test, some prodding and poking and 6 hours later I was released with nothing obvious wrong. I remained ill for about 10 days with a variety of symptoms, but am now, almost, back to full health.</div>
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I have often spoken of how emotionally draining Hugo's illness can be. How tired I often feel and that the constant worry can fill my head at the expense of everything else. It's impossible to quantify the effect his illness has on us all. How tired is too tired, how stressed is too stressed? What is because of his leukaemia and what is just life?<br />
<br />
I've been told on a couple of occasions that I take on and do too much. I'm not sure I agree, but being ill has made me question the possibility that maybe it is too much for someone who has been looking after a child with cancer for nearly 3 years. It felt like my body had had enough, that it had reached a point where it had no option but to shut down and force me to rest. Perhaps the worries and stresses have been building without me noticing as I tried so determinedly to provide a normal life for my family. To feel thankful and to make a difference. To not let cancer win.<br />
<br />
I'm tired, we're all tired. This journey has been long and the end is now so close. The moment we have been waiting for is within our grasp, but with that comes a different kind of worry. What happens next? </div>
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I stopped working just over a year ago and at times I have struggled to justify my new unpaid existence. I have felt guilty for how little I have achieved on my to do list, how messy the house is and how snappy and irritable I still am much of the time. I have searched for a purpose, a path that I could follow into the next phase of our life. I want to take the broken pieces and make something beautiful and strong from it all. To give some meaning to all that has happened.</div>
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But these last couple of weeks have shown me that maybe I am putting too much pressure on myself. Maybe being where I need to be, doing nothing more than being there for my children is enough. Putting one foot in front of the other and managing one day at a time is enough. That taking care and being kind to myself is the best thing for Hugo. He needs me to be strong for when he isn't. To carry him through these last few months of treatment, because there is nothing more important than that. It just doesn't work if I'm broken. Maybe just getting through this experience is beauty enough for now, the rest can follow. Perhaps there is meaning in a million different ways that we can't possibly see or comprehend yet. There is no rush.</div>
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<div style="text-align: justify;">
So I will try to slow down, to help us all to slow down. To take it one day at a time and not stress the small stuff. Maybe the last couple of weeks were a wake up call, a reminder of what is important right here and now. Or maybe it was just a virus!</div>
<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-85158062475298880222018-05-09T14:01:00.000+01:002018-06-20T18:50:24.725+01:00My Other Child<div style="text-align: justify;">
A few months ago I posted a photo of Henry on Facebook. We were on a day out, just me and him. A treat day to spoil him a little, because it's tough when you're the sibling of a child with cancer.<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzsAs5w5saSQ4ch9G7zZ41sDQeway-6LHvwE4geSB1Z5XNQyodYseW8cIZnBe_X4sZeC82EjbnPzWwRp8GRIEfRNOAeLEz4RFJZa3Mb7NCGSwgs_ew4OKyGXkoTLm9-_XFHXrQL1CBuQ/s1600/Hugo+Henry+day+out.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzsAs5w5saSQ4ch9G7zZ41sDQeway-6LHvwE4geSB1Z5XNQyodYseW8cIZnBe_X4sZeC82EjbnPzWwRp8GRIEfRNOAeLEz4RFJZa3Mb7NCGSwgs_ew4OKyGXkoTLm9-_XFHXrQL1CBuQ/s200/Hugo+Henry+day+out.jpg" width="150" /></a></div>
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<div style="text-align: justify;">
It received more 'likes' than anything I had previously shared and anything I have posted since. Henry was delighted and enjoyed reading the kind comments. I was pleased that it had given him a lift and proud that I was raising awareness, telling the whole story of life with cancer.</div>
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But it didn't. It didn't tell the whole story, far from it. It was a shiny social media snapshot, easily taken and easily shared, but it was just a glimpse. A brief moment in the spotlight for my other child.<br />
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It didn't tell of the frustration and anger that Henry often feels, much of it directed at his brother, at the inevitable imbalance of attention. Of how this anger sometimes spills over into his behaviour and affects his school life.</div>
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It didn't show the counselling sessions we attend where Henry tells them he feels less important, or the times he has 'jokingly' told me that he sometimes wishes he was the one with cancer.</div>
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Or how his confidence has dipped and his spark has dimmed. The questions he asks about blood cells, about cancer, about death. The conversations where he struggles to articulate how he is feeling, because what 9 year should have to try and put this into words.</div>
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How so much of the time his life seems unfair and no longer entirely makes sense. It doesn't tell of the sports days I have missed because I am at the hospital, or the days out that don't happen, or how often he is aware that Hugo needs to come first. Why sometimes people ask after Hugo and not him, or why Hugo has a Facebook page and doesn't have to eat his vegetables. Why the rules are different for him.</div>
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It doesn't tell of the guilt I feel in my role as a mother. That maybe we have missed something, that we aren't doing enough. Did we take for granted for too long that he was fine, all the while knowing that he couldn't be, not really. If we as adults struggle to make sense of this strange new normal that has become our life, then how could he possibly be fine?</div>
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I suspect much of his behaviour is a natural stage of development for children of his age. To start to doubt themselves and feel frustration. To begin to realise that perhaps they are not the best at everything after all, to dislike and argue with their siblings. But Henry is being forced to deal with so much more in his life and this has exasperated things. Made it a little tougher than it might have otherwise been, brought to light feelings and emotions that might otherwise have been passed by, or saved for a time when he was mature enough to process them.</div>
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Whether it is a phase or because of Hugo's illness no longer matters. I have a 9 year old who has now spent over 2 and a half years of his life feeling like the other child, and that is just not fair.</div>
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However, it also doesn't show how much more there is to Henry. How brilliant he is at building lego, the wonderful imagination he has, or how hard he works at his swimming. How he is always willing to give anything a go and try new things.</div>
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It doesn't show how often he tells me he loves me, or of the cup of tea he wanted to make me on Mother's Day.</div>
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It doesn't show how every single night, without fuss, he comes upstairs and pretends to search for Hugo, when we can all see he is hiding under the covers, again. That he helps and encourages Hugo with his walking and looks out for him at school. Or of the beautiful bond that is developing between them.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6T4SQIOeK5Ih-xricXHF3BEmtSGV1xlqFrq8KEQQJ1FT4Mw5X-QNwXjNW5xg2Tzn_I7RlG_xjyfyh947Wn_NPV2GgYJ8S5tqu8eeLrLnrlqzeJaF63Subm9bfchoGdJDLnwuIqwQJ5Q/s1600/hugo+walking+Rich+Henry.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6T4SQIOeK5Ih-xricXHF3BEmtSGV1xlqFrq8KEQQJ1FT4Mw5X-QNwXjNW5xg2Tzn_I7RlG_xjyfyh947Wn_NPV2GgYJ8S5tqu8eeLrLnrlqzeJaF63Subm9bfchoGdJDLnwuIqwQJ5Q/s200/hugo+walking+Rich+Henry.jpg" width="150" /></a></div>
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Or that he knows and appreciates the treats we get because Hugo is ill. How much he has enjoyed the charity trips to Legoland and Chessington, the gifts he receives and how proud he is that he has now met the wonderful David Walliams 4 times.</div>
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It doesn't tell that he tries his best to understand Hugo's condition and accept the unfairness of the situation.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuiwwGBAAu84kwh4f0fUSdtnThLB3qt5fcNTZjLNiKyG7li-jR-4SXqcu7jNRgcqvEoLGRPphRgxccJDK2umRVfadrk-zPzq4eMbXc7ZpJVx2yzaY49RbJtklsSwIzYWacptr2Dhgag/s1600/Hugo+Duxford.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuiwwGBAAu84kwh4f0fUSdtnThLB3qt5fcNTZjLNiKyG7li-jR-4SXqcu7jNRgcqvEoLGRPphRgxccJDK2umRVfadrk-zPzq4eMbXc7ZpJVx2yzaY49RbJtklsSwIzYWacptr2Dhgag/s200/Hugo+Duxford.jpg" width="150" /></a></div>
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It also doesn't show how very proud I am of him. That despite everything, despite the difficulties and all that goes unseen, he is still somehow managing to be an amazing little person.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXvRZLzmXYVUWZesWnXN9A-c0YxuBobA77xxCdQJ_HG6EqwGbD7riTc_y8gb7LHyRcSan5PCsTZK6pbrQrjUepnzoU2lKpmMRI52GIL7MSICWPfT8uInfX6AsIkJyWHaRNMohCFs4Djw/s1600/hugo+me+and+Henry.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXvRZLzmXYVUWZesWnXN9A-c0YxuBobA77xxCdQJ_HG6EqwGbD7riTc_y8gb7LHyRcSan5PCsTZK6pbrQrjUepnzoU2lKpmMRI52GIL7MSICWPfT8uInfX6AsIkJyWHaRNMohCFs4Djw/s200/hugo+me+and+Henry.jpg" width="200" /></a></div>
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We will continue to put one foot in front of the other. To try all we can to make him feel valued and important, to balance things out as best we can. This is his journey too and we will help him and trust that he has the strength to get through it. That he will come out the other side stronger and wiser because of all he has endured. That his confidence will grow and his spark will set the world alight. Because he's a fighter too and he is so much more than just my other child. You've got this Henry, you've got this.</div>
<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com4tag:blogger.com,1999:blog-2255856208825375078.post-64396760649008334292018-04-13T17:26:00.001+01:002018-05-09T14:01:44.530+01:001000 Days<div style="text-align: justify;">
Sunday marked 1000 days of treatment. 1000 days since Hugo was diagnosed. 1000 days of living a variety of new normals.</div>
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So what does life look like after 1000 days?</div>
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It has been 6 months since Hugo was hospitalised with acute liver failure. After allowing his liver to recover, his chemotherapy was restarted and the doses have gradually been increased over the months, but are still lower than they were when the problem started. His liver function is being regularly monitored and I am on high alert for the symptoms that I would now recognise. It's a delicate balancing act for his team. His chemotherapy needs to be high enough to do its job, but not so high that his liver is at risk. I have to trust that they are getting the balance right.</div>
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After 9 months of not walking, he is now back on his feet, able to walk unaided, with his strength and confidence building every day. I am spending more and more time pushing an empty wheelchair as he walks, or even runs, along beside me. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7WkwyGj6nJqluhZTVYk7w7FKrZJ0FY5oGgsoPbTutkLTkdLRNybAMGu71UsaZrwsaaiDLdfPkOX11ux42kN78ZNqd3AI9XoON9te2kuKdSrcbjGA9_9XeiVOXkp7FCYvgJvGXJ2fdDg/s1600/Hugo+walking+wheelchair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7WkwyGj6nJqluhZTVYk7w7FKrZJ0FY5oGgsoPbTutkLTkdLRNybAMGu71UsaZrwsaaiDLdfPkOX11ux42kN78ZNqd3AI9XoON9te2kuKdSrcbjGA9_9XeiVOXkp7FCYvgJvGXJ2fdDg/s200/Hugo+walking+wheelchair.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sometimes he even pushes his own wheelchair!</td></tr>
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It reminds me of the toddler stage. His stiff, wobbly walking, my heart so often in my mouth as I worry about him falling over or being unaware of the dangers of the road. Walking anywhere takes twice as long as he marvels at the trees or the sticks on the pavement. He stops to pick me Daisies, all the while singing happily. He is re-discovering the world and the joy it is bringing him is magical to watch.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPtE8UntX1oSuTaGDD82dd_GyFu5wTBn8XKUEXmCf6CFQpgMAFaf-uJf1Y1XddXktha9Qupie70yije_2bAebq5EFa8uMIngPAc6PcRf_QOR0VaLEArweCiDDjTNpmmMVeVEATsEfkUQ/s1600/Hugo+daisies.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPtE8UntX1oSuTaGDD82dd_GyFu5wTBn8XKUEXmCf6CFQpgMAFaf-uJf1Y1XddXktha9Qupie70yije_2bAebq5EFa8uMIngPAc6PcRf_QOR0VaLEArweCiDDjTNpmmMVeVEATsEfkUQ/s200/Hugo+daisies.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picking Daisies for his mama</td></tr>
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He still needs help with things other children of his age are able to manage and is far from where he should be physically. There have been heartbreaking moments where he has become upset, where he hasn't been able to keep up or join in, or it's all just too much for his tired little legs. Thankfully these occasions have been few, and most of the time he is unaware of his limitations and is simply proud of how far he has come, just as he should be.</div>
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He has completed 2 terms at school and is now doing full days everyday, when hospital appointments allow. School has been great for him and his walking and confidence have come on so much. He has made friends who are kind and supportive and I know he has fun. He is a little behind where he should, his shyness and lack of confidence holding him back. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxalzIPgK9eLRKGNYOaXyb7DDDvg4HgBvNvXbCKtn-7IeeVb2OLSRzUn_xnuMrXi21LA5DceCVerLYmgi07_OX2FQUsvrRNmTcCLhvvmmWfv7oOOAQz8liVO6lR-OgoYsR_xAO7MFn0w/s1600/Hugo+walking+school.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="456" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxalzIPgK9eLRKGNYOaXyb7DDDvg4HgBvNvXbCKtn-7IeeVb2OLSRzUn_xnuMrXi21LA5DceCVerLYmgi07_OX2FQUsvrRNmTcCLhvvmmWfv7oOOAQz8liVO6lR-OgoYsR_xAO7MFn0w/s200/Hugo+walking+school.jpg" width="142" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking the last little bit of the school run</td></tr>
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My perspective is so different to what it might have been, had cancer not come along. I am relieved that he goes in happily, that he has made friends and feels cared for. I don't wish for anything more at this point. However, I am so grateful to his school, to his teachers, who not only offer a supportive and nurturing environment, but who also have faith in him, who gently encourage him to achieve all that he is capable of, when I am afraid to expect or want more.</div>
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We've been lucky enough to have some lovely days out, including a trip to Legoland last month to celebrate the boys' birthdays. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihQMs0nOIGH75uK0Q45KQPv2vz4t_PSDE_RddIH_8Rd6A4LNznZPx0LBVwoZTKmX8QfybjO0oBjSY_wDegiflcT35thslMlHJR8tgloB-U_ezqOT2Y6Tirz3Q37rIWn6RVyQ-i8qC4Pw/s1600/Hugo+legoland.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihQMs0nOIGH75uK0Q45KQPv2vz4t_PSDE_RddIH_8Rd6A4LNznZPx0LBVwoZTKmX8QfybjO0oBjSY_wDegiflcT35thslMlHJR8tgloB-U_ezqOT2Y6Tirz3Q37rIWn6RVyQ-i8qC4Pw/s200/Hugo+legoland.jpg" width="150" /></a></div>
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There has been dressing up for World Book Day, hunting for eggs at Easter, birthday parties, a school assembly and dancing round the kitchen. We have managed to get away, to have fun and create some lovely family memories. Lots of wonderful, beautiful normal. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBmbDdTJaGr-j0dheVfrczhmTE26SbdtqevcdM9ZfqobkuC7ocJL550QFj32VWJ12HoOE2v-n_lHP4lAiAqGYQpAgIgPNIIJzBDMk0eovskKCLbIyn2GhpVCJ9OI4Vz5mwcGl8fydpCw/s1600/Hugo+world+book+day.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="476" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBmbDdTJaGr-j0dheVfrczhmTE26SbdtqevcdM9ZfqobkuC7ocJL550QFj32VWJ12HoOE2v-n_lHP4lAiAqGYQpAgIgPNIIJzBDMk0eovskKCLbIyn2GhpVCJ9OI4Vz5mwcGl8fydpCw/s200/Hugo+world+book+day.jpg" width="148" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thomas the Tank Engine and <br />
Harry Potter on World Book Day</td></tr>
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We have continued to raise money for charity, with the help of the wonderful Team Hugo army. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGoa5nY0yjdlzetJdsp0gQwOiUf_K-HRnCTaeBAxq1cGAskoDP9gjkHXDT5yvd66xXW-tbq-lS9mxDHLxXLJfJbYyCSmBgzwE6ul3SuqgKjAVU8dz-3ll8LtD-D0_r7QS6AsUN0G24hw/s1600/Hugo+Royal+Parks+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="768" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGoa5nY0yjdlzetJdsp0gQwOiUf_K-HRnCTaeBAxq1cGAskoDP9gjkHXDT5yvd66xXW-tbq-lS9mxDHLxXLJfJbYyCSmBgzwE6ul3SuqgKjAVU8dz-3ll8LtD-D0_r7QS6AsUN0G24hw/s200/Hugo+Royal+Parks+3.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After completing the Royal Parks <br />
Half Marathon for Bloodwise</td></tr>
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We have been spoilt with charity days out, gifts for the boys and Christmas parties. We have been proud to continue to raise awareness, to go gold, to support the charities that have come to mean so much to us. We have enjoyed helping to make a difference, to achieve something positive from the situation we find ourselves in.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQLo0ODBXhsQK-gdRZQ-h1dH6kSxF6Z1dq2KUyuzlSXg6uRTPhDD6FBDh_O3piFxXdFphjeqi-5zKD1r9fRCEFfvVhQwkAoTpct8fhegmm3Av5dpUxtZDDQOkBF8raAy9JJm4bneMQzw/s1600/Hugo+choc+basket.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="516" data-original-width="640" height="161" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQLo0ODBXhsQK-gdRZQ-h1dH6kSxF6Z1dq2KUyuzlSXg6uRTPhDD6FBDh_O3piFxXdFphjeqi-5zKD1r9fRCEFfvVhQwkAoTpct8fhegmm3Av5dpUxtZDDQOkBF8raAy9JJm4bneMQzw/s200/Hugo+choc+basket.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Delivering chocolate to our local hospital for Mother's Day</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSRTCqXIps2x8IKzq6B2w6pBaNlIcKKmWI56WTiDSjW9rynBDxD-h9IG2YTyir1Tn2TEIjhsoyoZElf_KyJE8miOvJgPJv_v-jPgMzlnUzwKUzeaWZXWVKNhuk2ZY2_2tqwksmyvNESA/s1600/Hugo+bloodwise+website.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSRTCqXIps2x8IKzq6B2w6pBaNlIcKKmWI56WTiDSjW9rynBDxD-h9IG2YTyir1Tn2TEIjhsoyoZElf_KyJE8miOvJgPJv_v-jPgMzlnUzwKUzeaWZXWVKNhuk2ZY2_2tqwksmyvNESA/s200/Hugo+bloodwise+website.PNG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hugo on the Bloodwise website during Blood Cancer Awareness Month</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixZnr9OtG7tVxTSWqHdMLvKGf6AmqzVmvWqlOgwp7cdyrQOgbTPgvri5h9mcz8bmFqo27LtNZVgS1dj8OfSCSMQQvzD1adfQcvHCpbez_rmh94IYuGhIoYVsdkHQukcr0h5gZCm0CNUw/s1600/Hugo+go+gold+collage.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="428" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixZnr9OtG7tVxTSWqHdMLvKGf6AmqzVmvWqlOgwp7cdyrQOgbTPgvri5h9mcz8bmFqo27LtNZVgS1dj8OfSCSMQQvzD1adfQcvHCpbez_rmh94IYuGhIoYVsdkHQukcr0h5gZCm0CNUw/s320/Hugo+go+gold+collage.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Going Gold in Epping for Childhood Cancer Awareness Month</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE8pqUFfXkxOcujbPTqggclGDrE6j6HiKeb_FDnLWi3SQ5oMMW0YmvOlJj58bE4K3BdbqpZq5yjHPDFYKgA6KnxHGzsXE7iPi74_aTOIyHFDxF8tEejv5GvNY0xhFAg8f1xnUE5CKNWQ/s1600/Hugo+bake+sale.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1509" data-original-width="1080" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE8pqUFfXkxOcujbPTqggclGDrE6j6HiKeb_FDnLWi3SQ5oMMW0YmvOlJj58bE4K3BdbqpZq5yjHPDFYKgA6KnxHGzsXE7iPi74_aTOIyHFDxF8tEejv5GvNY0xhFAg8f1xnUE5CKNWQ/s200/Hugo+bake+sale.JPG" width="143" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our wonderfully supported Bake Sale</td></tr>
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Of course there has also been trips to the hospital for temperatures, a blocked wiggly and of course chemo. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6DewHIDQUNGaTEfr-ic_d5w15QnSKdeGlt79ZC7A33IeCBbrtUleYPxtjTmhkAC5ELBh8xWwG1iWWQ3bOGnfTpCMrVzEl2WvAK1S5feVIchmYlzhzwp6F2oV-0B6Ge59Lu0OZyQVC5w/s1600/Hugo+hospital+wiggly.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6DewHIDQUNGaTEfr-ic_d5w15QnSKdeGlt79ZC7A33IeCBbrtUleYPxtjTmhkAC5ELBh8xWwG1iWWQ3bOGnfTpCMrVzEl2WvAK1S5feVIchmYlzhzwp6F2oV-0B6Ge59Lu0OZyQVC5w/s200/Hugo+hospital+wiggly.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An unexpected trip to hospital for a blocked wiggly</td></tr>
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There is still medication everyday, the dreaded steroids, weekly blood tests, physio and hospital appointments. There is constant, exhausting worry and every cough, cold or out of the ordinary symptom brings with it fear and a reminder of how fragile his situation is. Even after 1000 days, it still feels far from normal. It remains difficult in so many ways, but there continues to be so much to be grateful for too, and that is what we try to focus on.</div>
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Hugo is now 5, the age he will be when he finishes treatment. The end is in sight.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhVLbKwxJTdmBdDEwna9a0DEEQpuCGUy75YyQzJQiczFGRbAr1nfGAFR_uUBfq208a9VqtVUpX6Syf6ySHQuOczV928xmfL1hR_Dst1VB8qgcKg5UXg-FXcGZ6ARYbWPLSa2pcliJk7A/s1600/Hugo+age+5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhVLbKwxJTdmBdDEwna9a0DEEQpuCGUy75YyQzJQiczFGRbAr1nfGAFR_uUBfq208a9VqtVUpX6Syf6ySHQuOczV928xmfL1hR_Dst1VB8qgcKg5UXg-FXcGZ6ARYbWPLSa2pcliJk7A/s200/Hugo+age+5.jpg" width="150" /></a></div>
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He is growing up fast, his little personality developing. He makes us laugh frequently, his spark far from dulled by this experience. There is a cheeky side well and truly emerging, he squabbles with his big brother and can be frustratingly stubborn, but he remains kind and loving and he still gives the best cuddles.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6nK6ks3RdOKdyyrm2JL0RzxXumQo7U1ZDHX2qETvUsbya-kb7emqwt8LK4i0_jgL3CgwwkquLPVsTVLhJitUrCj0tJM8mQetaw68IRuTp6VJ9WyYL91jFUxiHg-zqtiDl4Ez40X31SA/s1600/Hugo+TGIs.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6nK6ks3RdOKdyyrm2JL0RzxXumQo7U1ZDHX2qETvUsbya-kb7emqwt8LK4i0_jgL3CgwwkquLPVsTVLhJitUrCj0tJM8mQetaw68IRuTp6VJ9WyYL91jFUxiHg-zqtiDl4Ez40X31SA/s200/Hugo+TGIs.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Look, I'm a Vampire!"</td></tr>
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<span style="text-align: start;">Sometimes it's hard to not want to wrap him up in cottonwool. With his mobility issues, his shyness and all he is having to endure, it is easy to treat him as younger than he is, to baby him, or make allowances for his behaviour that I wouldn't otherwise make. It can be difficult to find the balance between treating him normally, but at the same time being sympathetic to what he is dealing with. I'm sure he gets away with far more than he should, but in all honesty, I would give him the world if I could.</span><br />
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He continues to take all of this cancer rubbish in his stride. He takes his medication well, manages the prods and pokes and keeps smiling, always smiling. He is a brave and beautiful soul, inside as well as out, and he makes my heart sing with joy every single day.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13oNsHuzXXDq8MWUlSriK6TPJNhvng4G12gdouMNa-cnDzu9ESg7ipxLpNCKVI361mvqItcTn_xehux3vdAP4XrJ4rE4EFwWlmnnaj2a-kaLe1JsTj3qq5To3yv7jQ8J8M4YNkFbtpQ/s1600/Hugo+Duxford.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13oNsHuzXXDq8MWUlSriK6TPJNhvng4G12gdouMNa-cnDzu9ESg7ipxLpNCKVI361mvqItcTn_xehux3vdAP4XrJ4rE4EFwWlmnnaj2a-kaLe1JsTj3qq5To3yv7jQ8J8M4YNkFbtpQ/s200/Hugo+Duxford.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love that little face</td></tr>
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We continue to try and take it one day at a time. To do our best for both of our children, for our family. To find the joy in the ordinary, to take nothing for granted. We excitedly countdown to the end of treatment, when the new chapter in our lives can begin.</div>
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So, 1000 days done, 163 days left. You've got this Hugo, you've got this.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbHunOgCPS4pmrNLpByRf6xbbGhCYToxViKdXicH0IpaYJeCIVeXMY5c4jhLBY8Ht90THD_Zk8Cy8ST01bZPt_QyEJkDcmo2iwVKLJjVHUyDxBZbg8fGuCtT87xPdfMOoxFriSmpXgoA/s1600/Hugo+6+months+to+go.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbHunOgCPS4pmrNLpByRf6xbbGhCYToxViKdXicH0IpaYJeCIVeXMY5c4jhLBY8Ht90THD_Zk8Cy8ST01bZPt_QyEJkDcmo2iwVKLJjVHUyDxBZbg8fGuCtT87xPdfMOoxFriSmpXgoA/s200/Hugo+6+months+to+go.JPG" width="150" /></a></div>
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<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-7981033279685073152018-03-15T13:09:00.000+00:002018-04-13T17:26:56.695+01:00All About Hugo!For those who have never met him, here are 10 things about the superstar that is Hugo....<br />
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* He is one of only 4% of babies who are born on their due date. It was a speedy labour lasting only 3 hours from waters breaking to him being born, and only 10 minutes after we arrived at the hospital. He arrived with his hand above his head, in a superman pose. I should have known then that he had superhero abilities.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_fCdLKm1Z4I5gxcifZJSAZTGtxgasbCIvxRdkJbsd4Kh1jU3F4wDkiEzfF-upNqilPwbPVRGWet89BqgsxHJ1bRON-g5mqpyIy6hFdu6QTr0Vz6Cm0ko9mmenmsNcpZSYu4NGAfUvCg/s1600/Hugo+newborn.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_fCdLKm1Z4I5gxcifZJSAZTGtxgasbCIvxRdkJbsd4Kh1jU3F4wDkiEzfF-upNqilPwbPVRGWet89BqgsxHJ1bRON-g5mqpyIy6hFdu6QTr0Vz6Cm0ko9mmenmsNcpZSYu4NGAfUvCg/s200/Hugo+newborn.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A couple of hours old</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAJYnSmBfA_dI0vSaEmtUaeRmWvSUCQuSGLeeI2asrIoLzI79PXxjcvY_6ymTx7zIESvUPFeGGTLeRlH7p84tRjVV0Nn03uJ2CBgwEijoSad3ly414aD1NkJCYvn69z7M3EvqNIJfXHQ/s1600/Hugo+baby+and+Henry.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="428" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAJYnSmBfA_dI0vSaEmtUaeRmWvSUCQuSGLeeI2asrIoLzI79PXxjcvY_6ymTx7zIESvUPFeGGTLeRlH7p84tRjVV0Nn03uJ2CBgwEijoSad3ly414aD1NkJCYvn69z7M3EvqNIJfXHQ/s200/Hugo+baby+and+Henry.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With big brother Henry</td></tr>
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* His favourite animal is the monkey and his favourite colour is red (both of which were the inspiration for our Virtual Dash medals).<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihgw2xjSWBuuoti1txERJv0_EeXCGEwtYfK1UWlZIVt8YFvg54X81RXs54UKNUjefTjRj-J1aT27RVGxqNfDPbG7yQFuO_ef5zLCRYd2VMbHEO-T3T5Su-XH3UzvcWDTRdfdhY4fis0w/s1600/Hugo+red+monkey.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihgw2xjSWBuuoti1txERJv0_EeXCGEwtYfK1UWlZIVt8YFvg54X81RXs54UKNUjefTjRj-J1aT27RVGxqNfDPbG7yQFuO_ef5zLCRYd2VMbHEO-T3T5Su-XH3UzvcWDTRdfdhY4fis0w/s200/Hugo+red+monkey.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Virtual Dash Medal designed by Hugo</td></tr>
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His favourite TV programme is Paw Patrol and he has an impressive collection of Paw Patrol toys that he looks after very well and keeps nice and tidy.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNLEYmNvfmytetHkcsvkHD8hjzlgWmJcC_Ozo75PD3ttslD1H1w9CBO-WpDhtMOhU-RoQV3s9QJuphQsWrmKUZo1Sd6f6igEq1Byrg6dGEvv155ynYxHqCv39qYiqHcCHx6psQ4bUEDA/s1600/Hugo+Marshall+ride.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNLEYmNvfmytetHkcsvkHD8hjzlgWmJcC_Ozo75PD3ttslD1H1w9CBO-WpDhtMOhU-RoQV3s9QJuphQsWrmKUZo1Sd6f6igEq1Byrg6dGEvv155ynYxHqCv39qYiqHcCHx6psQ4bUEDA/s200/Hugo+Marshall+ride.jpg" width="150" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5E_CVXF5T-Bw0EBQrvzSX0uF3j10_Hqr412QnqyIP01cSbBa-ggk7aW3F_djABdA6b0NRSjEGT6rsNO6o1fM1FHc_Luh23B68mCtioqOw6MKx68dZvoPZ9tkGaFYNRpb4hGq_6demEQ/s1600/Hugo+Chase.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5E_CVXF5T-Bw0EBQrvzSX0uF3j10_Hqr412QnqyIP01cSbBa-ggk7aW3F_djABdA6b0NRSjEGT6rsNO6o1fM1FHc_Luh23B68mCtioqOw6MKx68dZvoPZ9tkGaFYNRpb4hGq_6demEQ/s200/Hugo+Chase.JPG" width="150" /></a></div>
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* He is fairly quiet and shy and lacks confidence, especially with people he doesn't know. Once he lets you in he is loving, fun and worth the effort it takes. He is thoughtful, incredibly sweet-natured, kind and generous.</div>
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* He loves sparkly things and twinkling lights and one of his dreams is to go to Paris after being sent a postcard of Paris by night. It's on the top of our 'to do' list when treatment finishes!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDGdoRoNiaz5r2X7mDjYOZEFs8L9zzJjz01vWxxwoNFDmRMl3wIZt8l7j8XFbPUzxqegCHh4hdR1zcpvA2ouBi-P16yiL7nlwyclyr1QOZ9oAUoglyehNuES-Q_ixJdBJNK1LdPGYm-Q/s1600/Hugo+Paris+postcard.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDGdoRoNiaz5r2X7mDjYOZEFs8L9zzJjz01vWxxwoNFDmRMl3wIZt8l7j8XFbPUzxqegCHh4hdR1zcpvA2ouBi-P16yiL7nlwyclyr1QOZ9oAUoglyehNuES-Q_ixJdBJNK1LdPGYm-Q/s200/Hugo+Paris+postcard.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sparkly Paris by night</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhek4Y6o5ltS0ORGXl4IONKvx2l7Fb7qqofr1GY8CEHes7nMcBt3BFgK2DaBKAGEfymZogx8TnmqgMAvyROLzy_AxCy_Xv5LIQwtQ72i_t3FZyNxGch8Z9CyEOhBnVkD3Wrrp25XjMvrg/s1600/Hugo+ITNG.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhek4Y6o5ltS0ORGXl4IONKvx2l7Fb7qqofr1GY8CEHes7nMcBt3BFgK2DaBKAGEfymZogx8TnmqgMAvyROLzy_AxCy_Xv5LIQwtQ72i_t3FZyNxGch8Z9CyEOhBnVkD3Wrrp25XjMvrg/s200/Hugo+ITNG.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At In The Night Garden Live - loving a sparkly light!</td></tr>
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* He can be stubborn and is a pretty impressive sulker! He likes to do things in his own time and in his own way. He's quietly determined and will keep trying even if something is hard. He is tougher, stronger and braver than he may first appear (and has shown this time and time again over the last couple of years).</div>
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* He is a mummy's boy, has been since the day he was born. He gives the most amazing cuddles and showers me with a love that I do my best every day to deserve.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggVk-_G8dcegiUlezcjG_Qtzplc56a_XdQpoCEMLZrxdUIf8YR2OP2k81bnIM4_N7yOXzyuI07VMSyDibbZTNY3lCR_kClReIv7Ml1hgNbDrmNX3N4s4NPu-0zzrNUNf9r7VgQbv2P2A/s1600/Hugo+and+mummy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggVk-_G8dcegiUlezcjG_Qtzplc56a_XdQpoCEMLZrxdUIf8YR2OP2k81bnIM4_N7yOXzyuI07VMSyDibbZTNY3lCR_kClReIv7Ml1hgNbDrmNX3N4s4NPu-0zzrNUNf9r7VgQbv2P2A/s1600/Hugo+and+mummy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="428" data-original-width="640" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggVk-_G8dcegiUlezcjG_Qtzplc56a_XdQpoCEMLZrxdUIf8YR2OP2k81bnIM4_N7yOXzyuI07VMSyDibbZTNY3lCR_kClReIv7Ml1hgNbDrmNX3N4s4NPu-0zzrNUNf9r7VgQbv2P2A/s200/Hugo+and+mummy.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvcm8SlXUhnRVSdKg-UQ_P7DMw6ZsZGZ-DceCktDTdltwJvH0-1HOL7A1eUOhIxqL5WFMH_a_7QYiALw79n9vaA3lRVOOb7mKOweW1GJmy_w5Xpel2nExVwZDBe0DiUcCDA0cwydYsbw/s1600/Hugo+with+mummy+hats.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvcm8SlXUhnRVSdKg-UQ_P7DMw6ZsZGZ-DceCktDTdltwJvH0-1HOL7A1eUOhIxqL5WFMH_a_7QYiALw79n9vaA3lRVOOb7mKOweW1GJmy_w5Xpel2nExVwZDBe0DiUcCDA0cwydYsbw/s200/Hugo+with+mummy+hats.jpg" width="150" /></a></div>
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* His hair has always been a little bit crazy!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF6kw8IWu-gQm2gIF0XeplGdIhRoJG0Vam1M-D0FCqAQNv954YZCnVdRcQ0csqH9xWrUdSuNNq0T5hF-rdm0lRSBMO-Oh45c1cs41RBo-v-0IiPX03b5t0sVshlcQ12FcDg9sQzNwu2A/s1600/Hugo+crazy+hair+9+months.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF6kw8IWu-gQm2gIF0XeplGdIhRoJG0Vam1M-D0FCqAQNv954YZCnVdRcQ0csqH9xWrUdSuNNq0T5hF-rdm0lRSBMO-Oh45c1cs41RBo-v-0IiPX03b5t0sVshlcQ12FcDg9sQzNwu2A/s200/Hugo+crazy+hair+9+months.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">9 months old</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh07PvycPjvdXmNVwgeRpptpSEje3ftSh_hf5ovbwa7UmdinOWmZWfZwu-nJNWo4PMcrPDpHWFn7RgT__kTADAfRfDkgVJIMPmPAHbLGfXNS8GyEV6YkeWoWhkzrJbFdqll-roybOx_4g/s1600/Hugo+hair+16+months.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh07PvycPjvdXmNVwgeRpptpSEje3ftSh_hf5ovbwa7UmdinOWmZWfZwu-nJNWo4PMcrPDpHWFn7RgT__kTADAfRfDkgVJIMPmPAHbLGfXNS8GyEV6YkeWoWhkzrJbFdqll-roybOx_4g/s200/Hugo+hair+16+months.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">16 months old</td></tr>
</tbody></table>
It calmed down by about 2 years old. </div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjA6b5yp5m-HYq7my9pYMraFR7vKL2mO6vC0-UBOyvut6DwG-o1iY3J0H9DtTUN6LAzOZU93qlQRDG7ABUK7zm5T6voe08VXmbNa2Ts3uXmcXsjyT8o4dfci3du1WQEk6gJ5qhCxnVRw/s1600/Hugo+2+years+old+hair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjA6b5yp5m-HYq7my9pYMraFR7vKL2mO6vC0-UBOyvut6DwG-o1iY3J0H9DtTUN6LAzOZU93qlQRDG7ABUK7zm5T6voe08VXmbNa2Ts3uXmcXsjyT8o4dfci3du1WQEk6gJ5qhCxnVRw/s200/Hugo+2+years+old+hair.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2 years old - 4 months before diagnosis</td></tr>
</tbody></table>
Then it all fell out!<br />
<div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjchUKQtK4AD3ME0PTe6Ztnd-jqiUOqvZbw5tH7ah1cLNziAor76gLzTafR10TPmn-XMPpjweNlyOTQ5WQBNi7Qsl3xMHniEFpgm86u9p3EZOboeckavBPYVkZd8F_lHvS5chtI1ceRxQ/s1600/Hugo+-+chair+bedroom.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjchUKQtK4AD3ME0PTe6Ztnd-jqiUOqvZbw5tH7ah1cLNziAor76gLzTafR10TPmn-XMPpjweNlyOTQ5WQBNi7Qsl3xMHniEFpgm86u9p3EZOboeckavBPYVkZd8F_lHvS5chtI1ceRxQ/s200/Hugo+-+chair+bedroom.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rocking the bald look!</td></tr>
</tbody></table>
It has grown back thicker, slightly darker and crazier than ever!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQM7BCIA-TI2lreJa-9gFTcaCBGiHMrAxJ3oouB8yQwSqLXHxvkKdKFMd9oGxE27Bv2PWhxW3qKhCjWJI4Pp9m4P7FeZYli7X_AC15FESp_kMQQPuVkSzeOfsI94AwtxywxhbFqLXI7A/s1600/Hugo+big+hair.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQM7BCIA-TI2lreJa-9gFTcaCBGiHMrAxJ3oouB8yQwSqLXHxvkKdKFMd9oGxE27Bv2PWhxW3qKhCjWJI4Pp9m4P7FeZYli7X_AC15FESp_kMQQPuVkSzeOfsI94AwtxywxhbFqLXI7A/s200/Hugo+big+hair.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big and crazy hair!</td></tr>
</tbody></table>
</div>
<div>
* He loves to dance. Around the kitchen, in shops, wherever. Being in a wheelchair hasn't changed this, he loves a good chair boogie too!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxmXF68494puo5BkW3bJ2-ICskHTTvFppJLGxbvnzf02CH8rsp-nJYYMGhMPyFKtLWnjVd5bABi0SDUqzRMS7lxh5DQZFysnBSSVidby-Rl8xHgFMbor1NN0r0ui_XEA2gv6MmzDGCBQ/s1600/Hugo+dancing+holiday.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxmXF68494puo5BkW3bJ2-ICskHTTvFppJLGxbvnzf02CH8rsp-nJYYMGhMPyFKtLWnjVd5bABi0SDUqzRMS7lxh5DQZFysnBSSVidby-Rl8xHgFMbor1NN0r0ui_XEA2gv6MmzDGCBQ/s200/Hugo+dancing+holiday.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having a boogie on holiday</td></tr>
</tbody></table>
</div>
<div>
* His cuddly bunny (imaginatively named Bunny) is his best friend. Hugo sleeps with him, asks for him if he is upset, and Bunny is never far from Hugo's side. Bunny doesn't leave the house though, unless we are going on holiday or to the hospital - although that has changed recently after Bunny was traumatised from an extended stay at GOSH after being left in the consultants office!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMESAonQGolXx5XizVgQGZRlrZ4BSl74zFwWD4y9lkx1wFJJrZYjNrrIUuWgSIEB09FLwzv_zYqCzk3HOM_TJB_YJpEXYnmZRCnIXpLtYWLnYZoD_73rs_78h1vN7xk7bZR8IBd07ygQ/s1600/Hugo+with+bunny.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="486" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMESAonQGolXx5XizVgQGZRlrZ4BSl74zFwWD4y9lkx1wFJJrZYjNrrIUuWgSIEB09FLwzv_zYqCzk3HOM_TJB_YJpEXYnmZRCnIXpLtYWLnYZoD_73rs_78h1vN7xk7bZR8IBd07ygQ/s200/Hugo+with+bunny.jpg" width="151" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">19 months old and 9 months pre diagnosis</td></tr>
</tbody></table>
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnh5V3O9CHXqzjmSWhf_evxl1UZhAfaE-eW1TVIIqGZw1l9NXw8GSferNMTq0_Q5EzbkJANDKL6leVgiFVv1ajgbNu23pDViXTXdZ9VBs4qwdflNTQFSlL2P6JqzE7pBk10fFSGEkXFQ/s1600/hugo+bunny+hospital.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnh5V3O9CHXqzjmSWhf_evxl1UZhAfaE-eW1TVIIqGZw1l9NXw8GSferNMTq0_Q5EzbkJANDKL6leVgiFVv1ajgbNu23pDViXTXdZ9VBs4qwdflNTQFSlL2P6JqzE7pBk10fFSGEkXFQ/s200/hugo+bunny+hospital.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bunny keeping Hugo company on a hospital trip</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge8DacmyeZmxzFHU6WtNrFjGxPmLBv4KWrX5u3g7zegXx5ObyE-ggcpzQShY4tZKsWQgP7zUrFJyf15ENI2LF_K1xK-MguCICAiFPTx_oMLBFg4cYQHqVNmuAexm-lC1lqiM-Th32xWg/s1600/Hugo+bunny+obs.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge8DacmyeZmxzFHU6WtNrFjGxPmLBv4KWrX5u3g7zegXx5ObyE-ggcpzQShY4tZKsWQgP7zUrFJyf15ENI2LF_K1xK-MguCICAiFPTx_oMLBFg4cYQHqVNmuAexm-lC1lqiM-Th32xWg/s200/Hugo+bunny+obs.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bunny having his obs done at GOSH</td></tr>
</tbody></table>
<div>
* He has a cheeky side, knows how to wind up his big brother and has a great sense of humour. He brings smiles and fun to our lives and makes us laugh every day with his 'Hugoisms'.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXaOCGMy-BXWdl6277ddXmL58A4BU1WAgSRjTQjJZbQ4RKrDsM623zHiyOVSifV0vjyhtLBV44nVcqUP47OUFFpUz9S_DKKClEWm8GbRF69vLceWM-PDGFESMnq4_vzBhgY94jUJYedg/s200/Hugo+cheeky.jpg" style="margin-left: auto; margin-right: auto;" width="150" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheeky brothers</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE1riQ1rUNeonNgUmHAlrYNavx9TvjiedJO-yZeMs1I6DF4T5TekYqMmqBe3S-a4WZUa4iU76McjWqoUDpv2wkDuyQ2D-XJsBNTY5YvsjjWDPIgEOHiWw1eomykL5szRtRMcMOJiVBoQ/s1600/Hugo+cheeky+DW.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: left;"><img border="0" data-original-height="424" data-original-width="640" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE1riQ1rUNeonNgUmHAlrYNavx9TvjiedJO-yZeMs1I6DF4T5TekYqMmqBe3S-a4WZUa4iU76McjWqoUDpv2wkDuyQ2D-XJsBNTY5YvsjjWDPIgEOHiWw1eomykL5szRtRMcMOJiVBoQ/s320/Hugo+cheeky+DW.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Unsurprisingly David Walliams brought <br />
out his cheeky side!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_8EtFRRnLSvYTqnL_ztahRinRvmq0CzQeJ6H-cDGV0AoWPG180PT7FegSlGamW-EqMzoaufJciw3e55Roaj0n8v0WNPq9bd_P2I_JvZQj4ReVOhr4mceKW-5n_WyDf_SbyWsgv8lbQ/s1600/Hugo+cheeky+pants.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_8EtFRRnLSvYTqnL_ztahRinRvmq0CzQeJ6H-cDGV0AoWPG180PT7FegSlGamW-EqMzoaufJciw3e55Roaj0n8v0WNPq9bd_P2I_JvZQj4ReVOhr4mceKW-5n_WyDf_SbyWsgv8lbQ/s200/Hugo+cheeky+pants.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brightening up a hospital stay</td></tr>
</tbody></table>
</div>
<div>
* He's amazing! (That's 11, but who's counting!)<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Q_sm_K8IYwlhnC5d0JLzegmS-x8Y0lLwV-ao8qrdGQ61tZxcjp0lI-yRCGXPSX2nIUa7pC7VNHQ2XEBhuqXjPKlx4_mpN0BFYO4CaCmWujKbbwtfrJbHl35zVHATY_E_esbuDlbn-A/s1600/Hugo+Bloodwise+statue.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Q_sm_K8IYwlhnC5d0JLzegmS-x8Y0lLwV-ao8qrdGQ61tZxcjp0lI-yRCGXPSX2nIUa7pC7VNHQ2XEBhuqXjPKlx4_mpN0BFYO4CaCmWujKbbwtfrJbHl35zVHATY_E_esbuDlbn-A/s320/Hugo+Bloodwise+statue.jpg" width="240" /></a></div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-58660490908135601962018-02-13T13:36:00.001+00:002018-03-15T13:11:08.260+00:00The Long Version<div style="text-align: justify;">
Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
We have these every so often. I don't tend to write about them, because everything turns out to be ok. There's nothing to worry about and it just doesn't seem newsworthy in the bigger picture, once the moment has passed. But I should. Because these bumps are so much a part of our cancer journey. They are the reason why our life is so far from normal, they are the story behind the chemotherapy and the more familiar aspects of a cancer experience.</div>
<div style="text-align: justify;">
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<a name='more'></a></div>
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I often share them on Facebook at the time. I get great comfort from the love and support shown in the comments. It's heartwarming to know that Hugo has so many people behind him, willing him well. But I often feel a little embarrassed, when everything turns out to be fine. Like I've made a big deal out of nothing, that I am in someway being dramatic or attention seeking. But as is so often the case, social media only tells half the story, so perhaps it is my duty, as a blogger, to tell the other half.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The first blip was a temperature. Definitely a familiar occurrence, and this one, like many of Hugo's temperatures, ended with oral antibiotics, no hospital stay and no infection.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIKgInBur6BGYiGvOA_YYIsXjy6ts-OLXvniinWNyWUbD4c8g-YYeiWpbbeeu0a2f2khYP9VTXcfjtnlzXt3Jj1xxfy2QwhiLl6HHwhL6svtvxo8W3zvIhJSTrfj7gwNWhHusO0tvR1w/s1600/Hugo+hospital+temp.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIKgInBur6BGYiGvOA_YYIsXjy6ts-OLXvniinWNyWUbD4c8g-YYeiWpbbeeu0a2f2khYP9VTXcfjtnlzXt3Jj1xxfy2QwhiLl6HHwhL6svtvxo8W3zvIhJSTrfj7gwNWhHusO0tvR1w/s200/Hugo+hospital+temp.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nursing a temperature</td></tr>
</tbody></table>
The second was a port that didn't want to work. 3 nurse visits in 3 days. That resulted, firstly in the sample clotting, secondly in a strangely low platelet count, and finally a complete refusal to give out blood. This, coupled with a bloody nose, gave rise to some confusion. A strange combination of occurrences that could not be ignored. Again, all turned out to be fine. On retesting his platelet level was normal and after some magic unblocking medicine his wiggly was once again working and giving blood out beautifully.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1w2KzHYhd2w6qUufqtL4_KeJ5zGG9nlaXGMvn7RJhta39jJ3B9lmFHyX67H5PoKMgpSMGnktnspyAQrtcop7weOMHc6bKKGtIu2y8agayPyEwM76AUyvDKvInVQ3lyQ9mXeSF4dQDQA/s1600/Hugo+hospital+wiggly.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1w2KzHYhd2w6qUufqtL4_KeJ5zGG9nlaXGMvn7RJhta39jJ3B9lmFHyX67H5PoKMgpSMGnktnspyAQrtcop7weOMHc6bKKGtIu2y8agayPyEwM76AUyvDKvInVQ3lyQ9mXeSF4dQDQA/s200/Hugo+hospital+wiggly.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thumbs up for a working wiggly</td></tr>
</tbody></table>
</div>
<div style="text-align: justify;">
The short version of both of these stories is, there was a small bump, but all was fine. The longer version however has a little more to it. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
It includes the panic that flutters in my stomach whenever Hugo has a temperature or unfamiliar symptoms. Such minor occurrences in any other life, but not ours, not anymore. These symptoms are magnified in importance, as is the panic. <br />
<br />
The hastily rearranged plans, emergency childcare and snacks and toys hurriedly thrown in a bag. A dash to the hospital in the cold, dark and rain. The irritability and snappiness that come with a stressful situation.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
There is an upset Hugo for 5 days as he has to take yet another horrible tasting medicine in addition to the long list of drugs he is already taking, and the tummy troubles that follow every time he has a course of antibiotics.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
It also includes prodding and poking, temperatures and blood pressure taken and a sore bumpy as the nurses try and access his port for the 4th time in 3 days, then the inevitable tears as they insert a cannula into his hand instead.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The hours spent on a hot, stuffy hospital ward, trying to amuse a 4 year old boy who really just wants to go home. Half a weekend spent apart, instead of as a family, missed days from school, away from friends. Then the tiredness and exhaustion that follow, both physically and emotionally.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
There is waiting. Waiting for blood results, for cultures to grow, the doctor to come back, for phone calls to be returned. Willing a temperature to come down, symptoms to subside, for medicine to work its magic.<br />
<br />
It is trying to be positive, to keep smiling, to not allow the worry to take over. It is remembering to feel thankful, because it could always be worse. It is holding my child close and telling him how brave and wonderful he is. Being amazed at his resilience and grateful he is able to take so much of this in his stride, while feeling sad that he doesn't really know any different.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
And it includes worry. Hastily googled symptoms, sleepless nights and a fear in the pit of my stomach as the 'what ifs' whizz around in my head. The word 'relapse' flashing, impossible to ignore. There is telling myself it is probably nothing, but knowing that in the past 'probably nothing' has been pneumonia and liver failure, and once upon a time 'probably nothing' turned out to be leukaemia. So despite my best efforts, there is worry, great big fear and worry.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So the short version is, there have been a couple of small bumps, but everything is fine. The long version is so very much more. Because when it comes to cancer, no bump is ever really that small.</div>
<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-56858650110974717812018-01-16T12:39:00.003+00:002018-02-13T13:37:08.373+00:00Bring it on 2018!<div style="text-align: justify;">
So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I remember, just after Hugo was diagnosed, reading that treatment for his type of leukaemia would last just over 3 years. I thought it must be a mistake, a bizarre typo. How could life continue with any semblance of normality for that period of time. How could anyone manage 3 years of chemotherapy, let alone a child, my child.</div>
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But it wasn't a mistake. 3 years of treatment. 3 years of hospital stays and appointments, of uncertainty and worry, of prodding and poking and of medication with its nasty side effects. More than half of Hugo's life. It was huge and unbelievable then and it still is now.</div>
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It may sound like a cliche, but it has turned our lives upside down and changed them in ways we could never have predicted and in ways that I know are impossible for others to understand, unless they have been there themselves. I suspect that even when these 3 years are over that the emotional impact will last much longer, that finishing treatment is far from the end of this experience.</div>
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But, somehow we have found some normality, the days, weeks and months are passing by, often quicker than I imagined, and Hugo is managing, we are all managing.</div>
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Sometimes it's hard to summon enthusiasm for even the simplest of day to day activities. This experience is draining and it's often easy to go to that dark place, to see nothing but the difficulties, the things we are missing out on, the unfairness of it all.</div>
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But while I am so looking forward to the end of treatment, I also don't want to wish life away. We still have 8 months of treatment to go and that is far too long to not get on with living. So, hard as it may be at times, we are determined to enjoy every moment possible, to try and feel positive and grateful for all that we have, even if life is not how we imagined.</div>
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The next 8 months will see a series of 'lasts' for Hugo; his last course of steroids, his last IV chemo, his last weekly, daily chemo, his last birthday on treatment, to name just a few. They will be celebrated not only because they are 'lasts', but because they are representative of all he has come through, of all he, and we as a family, have overcome. It may seem strange, but I am looking forward to it. These will be our small victories in this horrible journey. The 'lasts' and the ability to keep smiling, as Hugo does so wonderfully.</div>
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I could worry about tempting fate, of celebrating too soon or counting down with too much enthusiasm. Sometimes I feel nervous, I'm always aware that the finish line could suddenly disappear or move further out of reach and the word 'relapse' is never far from my thoughts. But it wouldn't change what he has been through, all that he has already endured. Whatever the future may hold, he deserves these celebrations, he has earned them.</div>
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On New Year's Eve we wrote a list of things we would like to do, places we would like to go and things we would like to achieve during 2018. We plan to spend this year counting down, ticking off those 'lasts', celebrating and creating wonderful family memories. To do our best to focus on the positive and not let the difficulties bring us down or takeover.</div>
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<span style="text-align: justify;">We are so fortunate to have had such wonderful support from our family, friends and people who have been moved by Hugo's story. We want to share this with them, to shout from the rooftops, to enjoy all the good. There is much to be worried about, but there is so much to be grateful for too, so much light in the darkness.</span><br />
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And in the middle of all this is a little boy. A kind, sweet natured, loving little boy who doesn't fully understand how amazing he is or comprehend the enormity of what he is living through. Who doesn't go to that dark place or see the difficulties or unfairness. A little boy who fights with love in his heart and a smile on his face, who deserves all the fun we can muster, all the victories and celebrations, all the light.</div>
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So bring it on 2018, we are ready for you!</div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-34678913892835267512017-11-18T16:39:00.004+00:002018-01-16T12:40:42.843+00:00One Day Cancer, You Will Be a Dot<div style="font-size: 16px; line-height: normal;">
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<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif; font-kerning: none;">Today it has been 2 years, 4 months and 5 days since Hugo was diagnosed with acute lymphoblastic leukaemia.</span><span style="font-family: "trebuchet ms" , sans-serif; font-kerning: none;"> </span></span></div>
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<span style="font-family: inherit; font-kerning: none;">He was 2 years, 4 months and 5 days old at the time of diagnosis.</span></div>
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<span style="font-family: inherit; font-kerning: none;">This means that today, he has been fighting cancer for half his life. Tomorrow, more than half his little life will have been spent on this journey, on this battle. It will be 10 months after his treatment finishes, when he will be over 6 years old, before the balance swings back.</span></div>
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<span style="font-family: inherit; font-kerning: none;">At the moment cancer feels like a mountain in Hugo's life, in all our lives. Huge and all consuming, filling our every moment with its sheer size. A constant and unwelcome presence. But I know, I have to believe, it won't always be this way. That there will come a time when cancer will no longer be a mountain, but instead a mere dot. One day we will be able to look back, when the balance has well and truly shifted, and see cancer as a small dot on our otherwise rich and wonderful lives.</span></div>
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<span style="font-family: inherit;"><span style="font-family: inherit; font-kerning: none;">I do not want this experience to define Hugo, he is so much more than his illness and he will go on to be even more, but we will never be able to forget, the dot will always be there, however small. </span><span style="font-family: inherit;">My hope is that it helps to shape him, that there are positives to be taken from this otherwise horrible experience. That it is teaching him empathy and compassion. I hope it is showing him how strong and resilient he is. That different is good and you can fight a great battle with love in your heart and a smile on your face.</span></span></div>
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<span style="font-family: inherit; font-kerning: none;">I look forward to a time when he has conquered the mountain, when he will be able to look back and see how far he has come. I hope he won't feel sadness or anger at the difficulties he faced, but pride at how much he was able to overcome. That he will be able to draw strength and courage from his experience to help him face the inevitable obstacles and difficulties of life.</span></div>
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<span style="font-family: inherit; font-kerning: none;">I hope as parents we have taught him what we have learnt, to see joy in the ordinary, to find light in the darkness and to not take anything for granted. I hope he feels the love and support that constantly surrounds him and that it continues to bring him comfort and strength.</span></div>
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<span style="font-family: inherit; font-kerning: none;">I wish for so much for Hugo. A life full of love, happiness and adventure. A chance at normality, of the ordinary as well as the spectacular. I hope this experience will not dull his spark. That his kind, caring and beautifully sweet natured personality continues to grow and flourish, that his smile and cheeky sense of humour is not tainted or diminished by the length and toughness of this journey. But mostly I wish for him a life unencumbered by the fear and worry that cancer brings. A life free from the constant presence of a mountain that he didn't ask for and most certainly didn't deserve.</span></div>
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<span style="font-family: inherit; font-kerning: none;">I don't want to wish the time away, these are tough months and years, but there is joy too. We may be facing a mountain, but there are opportunities to stop, to take a breath and appreciate the view. We can be thankful that we are in a position to climb and to have been given hope that one day we will reach the summit. So for now, we will keep putting one foot in front of the other, we will keep climbing. We will have faith that there will come a day when the balance has shifted and the mountain is a distant memory. </span><br />
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<span style="font-family: inherit;">Because, one day cancer, one day you will be a dot.</span></div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com3tag:blogger.com,1999:blog-2255856208825375078.post-76345331303870680042017-10-30T10:36:00.002+00:002017-11-18T16:40:41.917+00:00A Bumpy Road<div style="text-align: justify;">
A few months ago I wrote about a bump in the road. Hugo had broken his leg and there were questions over his bone density and muscle weakness. My head was spinning with all the 'what ifs' as we waited for answers.</div>
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Hugo has been unable to walk since the break. There has been an inconclusive bone density scan, a painful nerve conduction test, a pause from medication, X-rays and most recently an MRI scan to rule out neurological or spinal issues. He has had physio, hydrotherapy and daily exercises. We have had more frequent visits to Great Ormond Street Hospital as they try to understand what is going on and help him get back on his feet. It has been over six months since the plaster cast came off. There are still questions, uncertainty and worry and I am still wondering just how big this bump in the road is.</div>
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During this time we have had to adjust to yet another new normal, that of life with a disabled child. There is now a wheelchair and a walking frame. It's hard. Physically and emotionally. Watching Hugo struggle painfully to put one foot in front of the other, realising that there are now even more things he is missing out on, a childhood that is slipping by unexplored. He continues to smile, to be brave and yet again I am thankful that he is too young to fully understand the extent of the situation and what lies ahead. The worries swirl in my mind - how will he manage his first school sports day? Will he alway be behind his peers, continually trying to catch up to the impossible? How long will this fight with leukaemia continue to affect his life? The realisation that the end of treatment will not mean the end.</div>
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A few weeks ago we hit another bump when Hugo was admitted to hospital for what turned out to be acute liver failure. We spent a week in hospital for treatment while again, they tried to figure out what was causing it. More questions, more uncertainty and more worry.</div>
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I've often said that this experience has taught us to expect the unexpected, but in reality this lesson means little. When a bump hits you can never be fully prepared. The problems can never be predicted, the answers are rarely straightforward. They are not black and white, they are a murky shade of grey covered in 'what ifs'. Remaining positive becomes all the more difficult when the battle you face is unknown. It's emotionally draining, it's heartbreaking and it's unfair.</div>
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But life goes on and so do we. The team looking after Hugo is expanding week by week as new possibilities are explored and the help he needs is provided. We remain grateful, acutely aware that things could always be worse. We may never have the answers to so many of the questions and we are slowly learning to accept this. </div>
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Hugo continues to amaze us with his resilience and ability to deal with whatever is thrown at him. He is a whizz in his wheelchair and has mastered kicking a football while using his walking frame. He has made friends at school, all of whom accept him and his wheelchair without a second thought. He is happy and he is living his life without a care for these bumps in the road.</div>
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This maintenance phase is proving slightly more challenging that we had imagined. The bumps more frequent and unusual than expected. It's taking more effort to stay positive, to look on the bright side, but as usual Hugo is showing us the way. He is giving us the strength we need, because if he can stay happy, if he can be strong, then so can we.</div>
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Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-85701890571439634492017-09-01T19:15:00.001+01:002018-08-09T20:52:10.444+01:00He is Here<div style="text-align: justify;">
So September has arrived, which means the start of both Childhood Cancer Awareness Month and Blood Cancer Awareness Month. A month where I try to raise awareness, to fundraise and share an insight into the world of childhood cancer. A month that has become incredibly important to me since Hugo was diagnosed with acute lymphoblastic leukaemia just over 2 years ago.</div>
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However this year is just a little bit more important, because this September Hugo starts school. </div>
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It would be a big day, even without the leukaemia. He is my last child, my baby. A sometimes quiet and sensitive child, he doesn't always adapt well to change or new people. He doesn't have the easy confidence of his big brother, always wanting me close for reassurance. I'm nervous for him and how he will cope, whether his current excitement will last beyond the school gate. Having both my children in school signifies a new phase in our lives which is both daunting and exciting. They are growing in independence and exploring a world away from me. I am excited to see Hugo take on this new stage in his life, but a little sad at the same time, at all we are leaving behind.</div>
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Then there's everything else. Everything cancer. The susceptibility to infections, the medications and the time off for blood tests, physio and hospital appointments. The lack of mobility, the low appetite and the tiredness that might make his day hard. There is the wheelchair, a hard to miss visual that sets him apart from his peers. This is not how I imagined it. Cancer was not part of the plan.</div>
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But he is here. He gets to start school. I will be taking that all important first day at school photo and waving him off with tears in my eyes. He is here and there are so many children who are not. Parents for whom this day will be unbearably hard as they think of what might have been, what should have been.</div>
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With this in mind, it seems even more important than ever to shout from the rooftops that it is September. We have even more motivation this year to want to make a difference.</div>
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So we will Glow Gold for Childhood Cancer Awareness Month. For Hugo, for the 11 children who are diagnosed with cancer every single day and for the 3 children a day that don't make it. Cancer is the most common cause of death in children aged between 1-14 years. Of the ones that survive the cancer and the treatment, around 60% will have to live with life long health issues, the fear of relapse and an increased risk of developing another type of cancer. We will Glow Gold for the children, so in the future it doesn't have to be this way.</div>
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I will be proud of my work with the charity Bloodwise. Research they have previously funded is the reason Hugo is still here fighting, that we get to celebrate these milestones. I will look forward to seeing him as the face of their Blood Cancer Awareness Month campaign that seeks not only to cure children with blood cancer, but to find kinder ways of achieving that cure. Bloodwise have achieved so much in recent decades with 9 out of 10 children now surviving Hugo's type of Leukaemia. But there is so much more to do, because that 1 in 10 who doesn't survive is someone's child, someones brother or sister who had their whole life ahead of them, someone who maybe should have been starting school this September too.</div>
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We will continue to raise awareness, because awareness is the first step. I will continue to tweet, to share our life on social media in attempt to show the reality of childhood cancer. I will urge people to donate blood and join the stem cell register. I will sell gold ribbon pins and continue to ask my friends, family and local community to Glow Gold. I will hold a bake sale to raise funds that will go towards vital research. I will try to make a difference, however small.</div>
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On 6 September I will have a tissue at the ready as I take my brave and beautiful youngest son to school for the first time. I will have faith that this is another challenge he will overcome, that he will yet again surprise me with his courage and ability to smile. Most of all I will be grateful. Because although it is not how I imagined it, he is here. He is here.</div>
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<br />Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com2tag:blogger.com,1999:blog-2255856208825375078.post-32530203752963015582017-08-27T13:20:00.001+01:002017-09-01T19:17:05.425+01:00What Would Hugo Say?<div style="text-align: justify;">
A few weeks ago the charity Bloodwise asked if Hugo and I would be the face of their Blood Cancer Awareness Month campaign. My first thought was to immediately say yes. To be able to share our story and raise awareness for a subject that has become so close to our hearts seemed like an amazing opportunity. But it also brought to mind a question that I have been pondering for a while now. What would Hugo say?</div>
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Since his diagnosis I have shared Hugo's story openly and honestly. There are photos of him on social media for all to see. I have blogged about the personal aspects of our story, the good the bad and the ugly. He has been in the newspaper, in charity magazines and videos. I have done all of this with the best of intentions. I wanted to let people know how Hugo was doing, to raise awareness of childhood cancer, to fundraise and to support others in the same situation, to let them know that they are not alone. I also wanted Hugo to see, one day in the future, just what he went through, what our lives were like and how amazing he was.<br />
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Hugo was 2 years old at diagnosis, he is 4 now. He has very little understanding of what having leukaemia really means, it's just his life. He doesn't fully realise that he is any different from his friends. In so many ways, this is a good thing. It protects him from many harsh realities, from the stress and the worry of his situation.</div>
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However, it won't always be like this. One day he will understand, he will have questions. Will he understand my actions? Will he be proud of what he went through, how brave he was and what he helped to achieve? Or will he be embarrassed at having so much of his life shared, or worse still, angry? Maybe he will want to help in my efforts to raise awareness and funds, or perhaps he will rather forget all about it and prefer not to talk about it.<br />
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<span style="text-align: justify;">Like so many other aspects of this experience, I just don't know. Yet again, I don't have the answers. I hope he will understand, that he will find it interesting even. That it will offer him an insight into a life that he may barely be able to remember. I hope he will appreciate the positives we tried to find, the difference we tried to make for children like him, because of him. I wish I could ask him. For now I will just have to trust in what we are doing, that we are doing it for the right reasons. That the bigger picture of helping others is worth the risk.</span><br />
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So after some deliberation, we gratefully accepted the opportunity. In September, Hugo and I will be the face of Bloodwise's Blood Cancer Awareness Month campaign. I am proud of my role as an ambassador with Bloodwise and I am grateful that they continue to give us opportunities to raise awareness, to achieve something positive from the situation we find ourselves in. Hugo is making a difference for children of the future. I hope he understands. I hope he is proud. I know I am.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com0tag:blogger.com,1999:blog-2255856208825375078.post-19832932475309465652017-07-13T21:45:00.003+01:002017-08-27T13:23:01.747+01:00Things I Have Learnt<div style="text-align: justify;">
It has now been 2 years since Hugo was diagnosed with acute lymphoblastic leukaemia. 24 months of our strange, new, cancer filled life. The learning curve has been steep and I'm pretty sure it's not done yet. Here are a few of the things I have learnt.</div>
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I have learnt medical terms, how to pronounce the names of medications that previously seemed like a foreign language. I can hold my own in a conversation full of acronyms and medical jargon. I know how to silence a beeping IV drip machine in the middle of the night and administer toxic medications to my child.</div>
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I have discovered that during tough times many friendships and relationships grow and strengthen, while a few wilt, never to be the same again. That love and support can come from unexpected places and even the smallest thoughtful gesture really can make a difference. I have seen that people can be so very kind and that there is a wonderful army of support behind us, willing us on.</div>
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I have imagined my child's funeral. I have thought about what would be said and who would be there. Songs on the radio about love and heartbreak have taken on a new meaning as I imagine them playing at his funeral. I have questioned whether I would be able to go on without him. I have learnt that I am not alone in having these thoughts. That despite the guilt I feel when these thoughts come into my head uninvited, they are normal. Heartbreaking, but normal.</div>
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I have learnt how strong and resilient children are. That my own children can amaze me every single day with their courage and their ability to keep smiling through whatever is thrown at them. While at times it seems so unfair and we are filled with anger and fear, we have grown stronger as a family. My heart is full of sadness and pride in equal measure.</div>
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I have realised that you never know what battles other people are fighting. What goes on behind closed doors, what news they have just received or what heartbreaking situations they are facing. We all have our own battles and we all learn to put on a brave face and put one foot in front of the other to get through the day. I hope I have learnt to be kinder and more compassionate.</div>
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I have discovered that 11 children are diagnosed with cancer every single day and that 3 of those children will not survive. That there is a whole world of childhood cancer that is underfunded with little awareness. I have met children who despite their bravery, their courage and their beautiful smiles, have had their lives cut short by this awful disease. This knowledge has driven me and I have discovered a passion in raising awareness and funds in an effort to make a difference.</div>
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I have learnt that the worry of 'what if', of not knowing what is around the next corner, can be completely draining. That this journey, at just over 3 years, is definitely a marathon and not a sprint. There are many twists and turns and it is impossible to predict what is coming next. Every child's experience will be different and no one has an easy ride. That it can be lonely and sometimes just getting through the day or holding a conversation can be exhausting. <br />
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I have realised that there is more to cancer treatment than hair loss and IV chemo. For Hugo it has been muscle weakness, loss of appetite, disrupted sleep, night sweats and mood swings to name just a few. It has meant a wheelchair and oral chemo every single day. It has been about expecting the unexpected and facing fresh challenges as they arise.</div>
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I now know that even through the most difficult of times and the most challenging of situations there can be light. That there can still be reasons to smile and that there is joy to be found in the ordinary. This experience has changed the lives of my family forever and I know that when this journey is over, it will never really be over. Along with the darkness, this experience has shown us how much we have to be thankful for, that we should never take anything for granted and how truly precious and beautiful life is.<br />
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I have learnt that whatever is coming next, we will keep growing stronger, we will keep fighting and we will try to keep smiling. I'm pretty sure we still have a lot more learning to do.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com2tag:blogger.com,1999:blog-2255856208825375078.post-84341622383128862762017-06-21T21:32:00.002+01:002017-07-13T21:46:13.619+01:00Today I cried<div style="text-align: justify;">
Today I cried. Not a huge great sob fest, just a little tear, catching me unaware. I cry fairly easily. Sad books or films on the TV, even adverts have been known to set me off. However I don't often cry because of Hugo's illness. I think the fight in me stops me, it just feels pointless, a waste of my time and of no use to Hugo. But today I did, just a little.</div>
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I was at Hugo's first hydrotherapy session. He hadn't wanted to get in the water. He doesn't like change or things that are new, it takes him a while to get his bearings and I wasn't surprised that he was a little unsure. He'd cried as I was getting him ready and told me he didn't want to do it. But there he was, in the water, kicking his little legs and smiling. I suddenly felt a wave of emotion rush over me.</div>
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There was my son, who I had just a few minutes ago pushed into the room in a wheelchair. My little boy who needs physio twice a week because his legs are no longer strong enough to hold him up. How did we get here, how did this become his life? I felt so incredibly sad for him. For all that he isn't able to do, for the huge great chunks of his childhood that he is missing out on. </div>
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But there was my son, who despite being unsure and nervous, was there in the water, giving it his all. My little boy who doesn't let the weakness in his legs stop him smiling and having fun. I was overwhelmed by pride for all he is managing to overcome and the amazing little person is he growing up to be.</div>
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There was my son, who has a life limiting, serious illness, but is still here. Who is fortunate that these medications exist, because despite the horrible side effects, the alternative is so much worse. I felt so thankful, so very lucky that this fantastic little man is still in my life.</div>
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So I sat there, by the edge of the pool, grinning like an idiot at my amazing son as a tear trickled down my cheek. Feeling incredibly sad, overwhelmingly proud and so very lucky.</div>
Lisa Griffithshttp://www.blogger.com/profile/18237904691117414513noreply@blogger.com4