The Long Version

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Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal. 

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.

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.

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.
Nursing a temperature
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.

Thumbs up for a working wiggly
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. 

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.

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.

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.

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.

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.

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.

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.

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.

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.

Bring it on 2018!

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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

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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

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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

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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. 

What Would Hugo Say?

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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?

Things I Have Learnt

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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.