Life Love and Leukaemia

Showing posts with label GOSH. Show all posts

What happens next?

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.

Day in the Life - Hospitals

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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.

What is maintenance all about?

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We have now reached the end of our first 12 week cycle of the maintenance phase. We are slowly adjusting to another new normal, one that will last a long time.

Reaching Maintenance - Yay!

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Today saw us back at GOSH for a second attempt at starting maintenance. Hugo's rosy cheeks had gone and his bloods were up a little, so we were hopeful that this time would be more successful.

False Start

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So today we set off to GOSH for the start of the maintenance phase.

Hugo's bloods were taken on Friday and they were still a little low, but we'd checked with GOSH and they were confident they would increase enough over the weekend to allow us to start maintenance today.

Phase 4 Part 2

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So we are now in the second part of phase 4. Along with the cyclophosphamide, Friday's visit to GOSH saw us restarting the dreaded mecaptopurine. Another 2 weeks of the yucky, nil by mouth chemo that Hugo really dislikes.

Delayed Intensification

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After a nice little treatment break Hugo has now started phase 4, delayed intensification. Having had a break from drugs and hospitals, I have been feeling quite apprehensive about starting again. We enjoyed having a little certainty in our lives and now we are into the unknown once more. But, the sooner we get on with it, the sooner it will be over. This is the last intensive phase before we get to maintenance which we are told is less arduous and will allow us to live a more normal life again. At the moment maintenance feels like the light at the end of the tunnel, not the Big light that will come at the end of treatment, but a light all the same.

Roar!

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Hugo and I are currently at GOSH for his last high dose of methotrexate. We are on Lion ward this time, rather than Giraffe ward as usual. The nurses on Lion ward are of course lovely too, but I am a little sad we don't get to finish our time here on our usual and familiar ward. We are not Lions, we are Giraffes! Of course there is plenty of time to visit the Giraffe nurses as we try to fill our days here.

Wonderful Giraffes

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Day 95 of Hugo's treatment sees up back at GOSH for high dose methotrexate round 3. As usual we receive a warm welcome from the wonderful nurses on Giraffe ward. We have been on Giraffe ward for all of our stays so far, even though there are 2 other oncology wards. Giraffes are Henry's favourite animal so it seemed fitting and strangely comforting when they brought us here after Hugo was diagnosed, like this was the right place for us to be. The ward is starting to feel like a second home and the nurses, many of whom have been part of Hugo's journey from the beginning, are starting to feel like friends. They have supported not just Hugo, but all of us. Building our knowledge and our strength. Giving us the confidence to continue when they are not by our side.

Relishing Normal

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We have been having a lovely normal week at home. We've had the car serviced, been to Henry's parent's evening, I even managed to get my hair done. This is excitement these days, getting to be normal.

A Mini Break

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We have just experienced our first unscheduled hospital stay. I suppose this is what we have been waiting for ever since we came home. I suspect we are lucky to have made it this long.

Interim Maintenance

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Over the past couple of weeks Hugo has finished phase 2 of his treatment and started phase 3, interim maintenance. No treatment break, this time we were straight into it. We were given the rest of Hugo's treatment plan, all 3 years of it. This means we also have an end date which is September 2018. For a planner like me it's good to know what we are dealing with, what is happening and when. However the pages and pages of treatment schedule which now sit in our blue folder are without doubt daunting.

We're going to the Zoo!

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Today marks the 2 month anniversary of Hugo's diagnosis. It feels like we have come a huge distance in that time. The immediate shock has been replaced with new emotions, equally as difficult, but perhaps less intense. We have found our way in the darkness, adjusted somewhat to the new normal and found light in the amazing way Hugo has coped with his journey so far. His strength has been contagious and we are all still standing strong.

Grandad on Duty

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Yesterday saw us heading up to GOSH for another dose of methotrexate administered by lumber puncture. This was our fourth trip since being discharged and we have been starting to feel like pros with our routine. We know what time to leave the house (early!), the route, what to pack and what we need to help cheer Hugo up when he comes round from the anaesthetic. However, this trip was different. Richard and Henry were off to Legoland so grandad was on duty!

Flying High

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So another big day has arrived. We were heading up to GOSH where they would give us the results of Hugo's MRD test. The result that would tell us if he'd achieved remission. Whether he would be classed as low risk or high risk.

Minimal Residual Disease

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Today saw another trip to GOSH for Hugo, myself, and Richard, and another sleepover for Henry. Hugo was having a dose of chemotherapy and a bone marrow aspirate. These are not new for Hugo but today was different, today was a big one. Today they would be testing to see if Hugo had achieved remission.

A Week in the Life

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This past week has seen us back at GOSH, this time Hugo was an outpatient on Safari ward. He was in for another bone marrow aspirate and some vincristine administered through wiggly.

Home Sweet Home

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Our stay at GOSH has lasted 2 weeks, but finally, 15 days post diagnosis and 11 days into treatment, we are allowed home.

We prepare to leave armed with a large bag of medication, with numerous leaflets and booklets. We have a medical kit in case of accidents with Hugo's wiggly, and a blue folder with the rather catchy title of 'Family Held Record - Paediatric & Adolescent Cancer'.

Phase 1 - Induction

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It has been 4 days since Hugo was diagnosed. We spent the first night at our local hospital and were then transferred by ambulance to Great Ormond Street Hospital (GOSH). The last 4 days have been a whirlwind, an intense and often surreal experience.

Pages

Life Love and Leukaemia

What happens next?

Day in the Life - Hospitals

What is maintenance all about?

Reaching Maintenance - Yay!

False Start

Phase 4 Part 2

Delayed Intensification

Roar!

Wonderful Giraffes

Relishing Normal

A Mini Break

Interim Maintenance

We're going to the Zoo!

Grandad on Duty

Flying High

Minimal Residual Disease

A Week in the Life

Home Sweet Home

Phase 1 - Induction

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