Showing posts with label acute lymphoblastic leukaemia. Show all posts
Showing posts with label acute lymphoblastic leukaemia. Show all posts
End of Treatment Bubble
It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like?
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.
Getting my Spark Back
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.
The Big Questions
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.
Leaving Normality
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.
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 - Bloods
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.
Day in the Life - Steroids
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.
Broken Pieces
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.
My Other Child
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.
Bring it on 2018!
So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin.
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.
One Day Cancer, You Will Be a Dot
Labels:
acute lymphoblastic leukaemia,
cancer,
childhood cancer
·
Today it has been 2 years, 4 months and 5 days since Hugo was diagnosed with acute lymphoblastic leukaemia.
The significance of this day?
He was 2 years, 4 months and 5 days old at the time of diagnosis.
A Bumpy Road
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.
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.
He is Here
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.
However this year is just a little bit more important, because this September Hugo starts school.
Things I Have Learnt
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.
Today I cried
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.
Watching and Waiting
When Hugo started the maintenance phase of treatment 14 months ago, we were warned that there would be hospital admissions. That Hugo's low immunity would make him susceptible to infections and that his inability to fight these infections would likely mean IV antibiotics administered in hospital. It wasn't a case of if, but of when.
Today I am Stopping
Labels:
acute lymphoblastic leukaemia,
childhood cancer
·
Once in a while, on rare occasions, things go just how you would like them to. All the pieces of the jigsaw fit together. An imagined ideal that seemed so out of reach becomes a reality.
All too often these precious moments pass us by in a blur. Lost in the hustle and bustle of everyday life. Drowned out by more challenging or stressful issues. Life rushes by and the chance to stop, take it in and feel thankful passes us by.
Well not this time. Today I am stopping. I am taking it in. I am feeling thankful.
Halfway
We have now passed the halfway point of treatment. Hugo is currently on month 20, with 18 more to go. We are on the downhill slope towards the end of treatment. That light at the end of the tunnel is getting ever so slightly brighter.
Running - My New Best Friend
Well maybe not my best friend, that spot is already taken. But in recent months, running and I seem to have developed a bond, we have reached an understanding and an appreciation has grown.
September is Coming
September is coming. Soon the children will be heading back to school and autumn will be arriving. It also means the start of Childhood Cancer Awareness Month, the colour for which is gold.
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