Life Love and Leukaemia

So this is Christmas

It was a close call, the week leading up to Christmas had seen 4 hospital visits, only one of which had been scheduled, but we made it through Christmas with no hospital stays, yay!

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.

He's Back!

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Hugo is back! After a week or so of being completely wiped out, he has turned a corner.

Tough Days

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We are now halfway through phase 4, delayed intensification.

Hugo has finished the second week of steroids, which again saw disturbed nights with painful legs and tummy. He has been completely wiped out and has spent most of the last week lying on the sofa with his precious bunny. He is still neutropenic so we are on edge, expecting him to come down with an infection and the thermometer has been in regular use.

A New Altered World

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Today was not a good day, today was pretty awful.

Today Richard had to go into work early. This meant I was on my own with the boys, rushing around trying to get us all ready and out of the door at a decent time. It meant I had to take a tired, listless, neutropenic Hugo on the school run which is something I would really have rather avoided. But that's not why it was awful.

A Badly Decorated Christmas Tree

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We are currently 17 days into phase 4, delayed intensification. During that time Hugo has had 5 scheduled hospital trips and 9 different drugs administered in a variety of ways.

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.

Raising the Bar

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Today sees the end of phase 3. Another one down, go Hugo!

I gave Hugo his last dose of mecaptopurine earlier this week. He will have to resume taking it in a few weeks, but for the moment it's off the drugs menu. I did a little celebratory dance and song, although I'm not sure Hugo was too impressed. It has been so good to be able to get him up from his naps without the syringe of doom in my hand. No tears, no struggle, just happy Hugo. We can now eat whenever we like, unrestricted by Hugo's 'non eating time', which I know Henry in particular will be pleased about. Hugo and I used the occasion to have a biscuit - any excuse!

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 Constant Supply of Gingerbread Men

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Since this journey began, I've found myself on occasions drifting into a kind of glazed daydream, pining for all the things we are missing out on since Hugo was diagnosed.

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.

It's only hair

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Given the enormity of what Hugo is going through it seems silly to be concerned about hair loss, vain even. But ever since his diagnosis it feels like we have been waiting. We were told it was going to happen, that it wasn't a question of if, but one of when. It could happen quickly they said, or it could take weeks, months even.

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.

A Letter to my Son

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Dear Hugo

When we were at the hospital in those dark and difficult days after your diagnosis, the doctors talked to us about the barrage of drugs you would need to take. They tried to prepare us for what was ahead, for the side effects you may potentially experience. The list was long and scary and I worried that somewhere in the process of trying to heal you we would lose all the little bits of you that make you who you are. That our happy, loving, easy going, sensitive child might disappear before our eyes, replaced with a child I no longer knew.

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!

Consolidation

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We are now 4 days into the second phase of Hugo's treatment, consolidation, a short phase at only 3 weeks.

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.

Trust in Us

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Since this journey began, many people have told me how well I'm doing, how well I'm coping. I know they mean well and I view it as a compliment that people think I'm doing well. It gives me comfort that I am providing the strength and stability that Hugo needs me to. That I am getting something right in this mess of a situation. But, it has also made me question how I 'should' be doing. Am I in denial? Has the enormity of the situation yet to hit me? Or worse, am I just an unemotional, insensitive person?

Beginnings and Endings

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The big day had arrived, my little brother was getting married! Hugo was well enough for me to feel comfortable leaving him, so I put on my frock, glammed myself up, then Henry, my gorgeous date for the day, and I headed off to Islington.

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.

Baby Steps

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Summer is well and truly upon us, even if in true British style, the weather is less than sunny.

The Guilt and the Fog

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Today I went for a haircut. It's my brother's wedding in 3 weeks and I'm very much hoping to make it. I wanted to hide the grey, of which I'm sure there is more of since this journey began. I didn't want to feel like the frumpy older sister. There are more important things to worry about, but I was conscious of the comfort eating and lack of exercise of late (not that there had ever been much in the way of exercise!). I feel like this journey has aged me, in just this short space of time. So, I went to get my hair done. And I felt guilty. I felt guilty for doing something for me. Surely Hugo should be getting my full attention? We'd been home from hospital for less than 2 weeks, how selfish was I to be leaving him already? (I should point out that he was with his dad, not home alone fending for himself!).

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.

What If?

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The weather has been warm and the boys had a great time out in the garden this weekend. Henry in the paddling pool and a still non-walking Hugo sitting in a garden chair playing with toys.

The New Normal

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We are slowly setting into life back at home, our new normal. Things feel incredibly different and the 15 days we were away for don't seem a fair reflection of the journey we have been on.

It's strange being out and about. I am very self conscious, like everyone can tell that things have changed, that I am now different. I feel like people are staring at Hugo, even though no one has any reason to and I know it's all just in my imagination. Hugo of course is taking it all in his stride and is loving being out and about after his 15 day confinement.

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'.

Freedom!

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Freedom! Well almost. Perhaps a small step towards freedom is a more accurate description. Today we have been allowed outside. After a blood transfusion yesterday, Hugo was taken off fluids so is no longer hooked up to a drip, there is no trolley to trundle round behind us everywhere we go.

Teardrops

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Since diagnosis, 7 days ago, I have had to hold Hugo as he cried while numerous medical staff tried time and time again to insert fresh cannulas into his small hands. Telling him it will be okay, when it was anything but okay. Knowing it needed to be done, but still feeling like the worst mum in the world. Wondering whether the trust between us would be forever damaged. Now today, they have surrendered and this morning me and his dad took him down to theatre to have a Port inserted. This is small chamber which is placed under the skin, over the rib cage, which links up to the jugular vein in the neck. It can be used to take blood and also give chemotherapy, fluids and blood products. Hugo would have had one fitted in a few weeks, but it has become necessary to do it earlier than planned.

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.

The Moment

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This is not how I imagined it. Not that I'd given a great deal of thought to it you understand. But, I'm not alone am I? In letting my mind slip, my imagination take hold and to wonder 'what if'? Maybe it is just me, I've always suspected I have an over active imagination, I tend to spend a lot of time wondering 'what it' about all manner of things and situations and much of the time those wonderings gather pace and before I know it I have full blown scenarios dancing through my head taking on a life of their own. Receiving a cancer diagnosis was no exception. When it had played out in my head I'd imagined an office, a sympathetic looking doctor sitting behind a desk, a concerned looking patient shooting nervous looking glances at a supportive partner or friend, bracing themselves for news. What I hadn't imagined was a cubicle in a busy, noisy A and E department. Yet this is where I find myself. The sympathetic looking doctor is here, a little young maybe, but definitely fulfilling the 'sympathetic looking' requirement. But there's no desk, no supportive partner to hold my hand. Just me and my 2 year old son and he most definitely wasn't meant to be here.

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