75 Days of Cancer…
Today marks 75 days of Cancer. And you’d be forgiven for believing we are a “normal” family. We joined the return to work, nursery and school rat race like so many people this week.
Bilbo was up early on Monday and couldn’t wait to get ready for school. After his dramatic weight loss over the last few weeks he was back in his “normal” uniform.
Put a hat on him and he looks like any other kid going back to school. Except he isn’t normal and whilst we can try and believe that for a split second, there are so many things that bring us back to “cancer reality”
What is going on in the Godber household?
- Food is a constant battle
- We’re still waiting for MRD results
- We’ve made a decision about the trials
- I am starting to have some serious anxiety about the next few weeks and phases of Bilbo’s cancer treatment
- We have a plan for next week
Bilbo isn’t eating
Since Tuesday 18th December Bilbo’s appetite has been fading. It started with tastes and has evolved into an out and out refusal to eat anything.
Bilbo put on 14lbs from diagnosis through phase 1: induction whilst on steroids. This was a quarter of this body weight and over a time period of 4 weeks.
Over a further 4 weeks he’s lost it all. As we move into the second half of phase 2: delayed intensification he’s going to have less weight to burn this scares the crap out of me.
Lucky for us the last few days have seen him eating a little more. He’s been enjoying eating some of his school dinners, or a packed lunch. We’ve managed to encourage him to eat more breakfast.
However he is still feeling nauseous and one night this week our dinner was a trigger and he was sick, despite having anti-sickness about 30mins prior.
I am so worried about what this will mean for Bilbo as we get back on chemo. If he is still not eating, is sensitive to smell and taste. How will he cope with school?
We manage his sickness with liquid medicine X3 times a day. I also have a tablet that dissolves on his tongue for more instant relief. One of us has to give that to him so I see some testing times ahead in the coming weeks.
Battling food is miserable – for Bilbo and for us to watch.
Bilbo’s MRD was done last Wednesday. If you recall we’re waiting for these results to give us the green light to continue treatment next week.
After the results not being what we’d hoped last time round I have a lot of anxiety about what the results will show this time. Bilbo has a second MRD after the second round of this phase.
In our last blog I talked about the trial and the decision we have to make: Decisions Decisions – Clinical Trials
We’ve decided to opt into the trial. What that means for us will not be clear until Bilbo’s MRD results come back at the end of Phase 2: consolidation. So a few more weeks to wait on this.
My anxiety is on the rise. I can hardly believe it has been 75 Days of Cancer And i’m starting to worry about what the next few weeks have in store. There have been moments over the last week where Bilbo has looked very sick. And how sick will Bilbo get? Fuck You Cancer
I’m anxious about his weight loss. If he loses 10% of his body weight he might need a feeding tube.
I’m anxious that we’ve had too much of an easy ride so far and therefore it must be our time to be in hospital, or have something go wrong.
I’m anxious about Bilbo getting sick, his temperature and how he feels.
I’m anxious about the impact Cancer is having on him.
I’m anxious about the impact this is all having on Harrison.
I was anxious about coming back to work this week.
And i’m scared about the future. Until this week I was keeping this contained. But it is giving me huge levels of anxiety. Our cancer journey still feels so long and full of hurdles.
As we become long term members of the parenting cancer club, we hear more stories of children who are travelling complex, cruel journey’s. Daily we’re thinking thank god that isn’t us, aren’t we lucky and then we have to battle with our own conscious.
As you’re reading this I know you will get it, because you will be thanking your lucky stars you aren’t us.
I’m anxious we’re not getting everything right to try to help Bilbo feel better, feel safe and feel secure.
I’m anxious about the school Bilbo is missing.
I’m anxious when i’m away from Bilbo and i’m on my own.
On my own my anxiety is at its worse, I have too much time to think, over think and worry. I hate being on my own. Unless i’m busy.
I wrote an epic post about how angry I was many weeks ago now: things I hate about cancer. The anger is starting to bubble again.
Every night when I check on my baby and take his temperature, when I look at him and think life is so unfair.
When I wish I could swap places with him and take the pain and discomfort away.
It boils over when we’ve battled food all day long. And the fruits of our labour result in Bilbo eating nothing but a lick of a weetabix or a bite of toast.
I get angry at the sound of own voice saying “do you want to try this?” “Bilbo are you hungry” “can you try a little bit” “just one bite” “PLEASE”
I’m angry that it is never ending, exhausting and we have constant worry for Bilbo. Like his blood.
Leukaemia is a blood cancer so it is no surprise his bloods are constantly monitored. Even when we are on a break from treatment the hospital keep an eye on Bilbo’s bloods.
His bloods were looking a little low on Wednesday so we were asked to do a repeat on Friday. His HB (Hemoglobin) is the number we track for his blood transfusions. Bilbo needs to stay above 80. The week before Christmas he dropped to 70 and had a transfusion. On Wednesday he was 83.
By Friday they’d gone up to 88 – yey!!!
BUT he’s neutrophils were on the decline. For these we want to be between 1.5 and 8. Unfortunately Bilbo was 0.3 on Wednesday and had gone down to 0.2 by Friday. This number indicates how vulnerable Bilbo is to infection. And the chemo pretty much destroys his immunity.
And just like that Bilbo gets another week off of treatment.
And we are once again left with that weird juxtaposition of knowing it is 100% the right decision all round. Bilbo needs another week off to build his strength, to eat and to feel normal.
BUT we know this adds another week to our cancer sentence. We’ve grown to accept this is part and parcel. 3.5 years is just a guide, every journey is different.
Making the most of it
When life gives you lemons, you make lemonade.
So with no chemo next week we plan to make the most of the opportunity. Bilbo will go to school if he can. Today we have a lovely day planned with Grandma and Grandad. Harrison is off to try gymnastics tomorrow.
And we will try everything we can to fatten Bilbo up ahead of next week.