Day 1135: 100 Days Left of Treatment
As of today we have 100 days left of treatment. I vividly remember writing 100 Days of Cancer, 1135 days ago. I remember because it was incredibly raw and painful. We had the ALL trial decision looming over us. We’d been through 100 days of hell and knowing that we had 1135 left was a daunting and scary prospect. It felt like forever. I didn’t know if I’d have the strength to make it through.
But here we are, Bilbo has completed 1135 days of treatment and as of today we have 100 days left.
How’s Bilbo Doing?
Up until a few weeks ago, Bilbo was doing pretty well. We’ve had a busy couple of months.
However the last few weeks have been tough.
We continue to worry about the various side effects. Bilbo’s chemo has been quite up and down. If you’ve been following along for a while you will know that there is a delicate balance for how much chemo children need. They need enough to keep fighting the leukaemia cells, but not too much that it reduces their blood counts leaving them immunocompromised.
Since his last chemo hold in October, Bilbo’s bloods have been doing really well. The consultants decided to increase his doses a few weeks ago.
As ever, I have been watching him like a hawk to see how he reacts. Bilbo’s toe has been sore, he has had antibiotics to clear up another infection in his big toe. His legs have been aching, he has been waking up in pain during the night. His lips have been looking dry and his hands are showing signs of starting to look sore again.
Despite all of that, he’s been going to school, he’s been doing his swimming lessons and he tries his best every day.
Nausea and Sickness
But a few weeks ago, Bilbo started to complain about food tasting strange. This isn’t unusual, Bilbo takes a cocktail of anti-sickness tablets because his daily chemo makes him sick. But for the longest time we’ve had this under control.
When it goes wrong, he gets terrible nausea, he doesn’t want to eat and then when he doesn’t eat he gets uncontrollable vomiting.
Over the last few weeks, he’s been complaining more and more about food tasting weird. We assumed it was his ongoing cold making things taste strange. And as his appetite for food reduced, Bilbo started to have more sickness episodes.
And then Covid-19 struck. Bilbo had another miserable day, complaining everything tasted weird, I decided to lateral flow test him. And the tell tale pink line showed up and a PCR test confirmed Covid-19.
We keep an eye on Bilbo’s temperature all the time anyway, but he didn’t spike any temperatures. On Monday Ali one of our lovely nurses visited the house for bloods, we did his finger prick in the garden. His bloods were great. We thought we’d got away lightly.
But as the week went on there were less and less foods Bilbo wanted to eat. As he stopped eating, he started waking in the early hours with hunger and sickness. The sickness breaks my heart, there is nothing worse than seeing your child suffer. Especially when you feel helpless to make it better.
We’ve been here before, in fact it was about this time 3 years ago. Bilbo’s weight had blown up on steroids he put on 14lbs. Then over December he started getting sick, at the time we didn’t know he was reacting to the 6MP chemo, all we could do was try and find things he’d like to eat.
We entered a vicious cycle of Bilbo not wanting to eat and in turn being sick because he hadn’t eaten, rinse repeat. By the end of Christmas we were getting advice on how to get more calories into him. He lost the 14lbs and kept losing more weight.
We didn’t enjoy Christmas 2018, we just about survived it, Day 59: Surviving Christmas with Cancer.
We know better now, we know there is always something we can do. My mummy instinct was telling me it would be better for Bilbo to go to hospital for bloods, rather than have them at home. I also had a nagging feeling the issue with food had nothing to do with Covid-19. The problems he was having with taste pre-date his Covid-19 diagnosis.
Trust Your Mummy Instincts
We agreed to take Bilbo in. My mummy instinct was right.
Today is Day 11 for Bilbo so in theory he should be OK to be out and about, we were even thinking about sending him back to school. However we learned today, that some children with cancer take longer to get over Covid-19. In order to keep the other children safe, we were let in the back way and put in a side room.
Bilbo had full blood work done, a PCR test and some additional enzyme tests. I talked his consultant through his sickness. As ever we worked together to piece together the best way forward for Bilbo.
Firstly Bilbo’s anti-sickness has a lot of wiggle room to be increased. He has grown and his chemo doses have increased.
His blood count had also dropped quite significantly, his neutrophils had gone from being a healthy 1.45 to a scary 0.65. Anything below 0.75 means a chemo hold. In addition his enzyme numbers for his liver, pancreas and bladder are on the high side. Our consultant put the unusual numbers down to his body fighting Covid-19. Another reason to hold the chemo, to allow his body to recover.
We left hospital with lots of extra anti-sickness, whilst Bilbo is on the chemo hold we can get some more in his system so he can start to feel better. We will repeat bloods next week and then if they have improved he can start back on his chemo.
For now, they would like us to keep Bilbo at home, and treat him like he still has Covid-19. Harrison is isolating until Thursday so it is one big Covid-19 party in the Godber house. Thankfully, Rich and my mum are both Covid-19 free now.
Isolation hasn’t been so bad. Compared to the 18 weeks last year a few weeks will be a breeze. We are managing to keep ourselves amused. Bilbo has been given his own mobile phone, he is allowed to message friends and family on WhatApp and post on Instagram. We have had some fun today making reels. And he likes taking photos of our new pets, 2 little gerbils Hibbles and DJ HG.
How Am I Doing?
I am tired. I thought I was doing OK but I’m not. Every day is a struggle, I am continuing to put a brave face on, show up. But I am exhausted and it is getting harder and harder to do this.
And the last 24hrs have been a rollercoaster. I knew something wasn’t right, but I constantly question my instincts, I worry I’m paranoid, making something out of nothing. My mind plays awful tricks on me. My insomnia is back, I’m emotionally and physically exhausted.
We’ve spent nearly 2 years trying to avoid Covid-19. I even managed to avoid giving it to Bilbo when I got it in August. And touchwood, he will be fine but the sickness returning has flawed me.
Christmas 2018, was so traumatising. Reliving it again is agony.
I am also mad at myself. Mad that I don’t have the same resolve and patience to deal with it like I did 3 years ago. I feel sick with guilt that maybe I’ve not hidden my frustration well enough as Bilbo has been apologising.
Every time he is sick, he tells me he is so sorry. At the end of the day as I put him to bed, he will tell me he is sorry for being sick, and for ruining everything. On the drive home from hospital he told me how sorry he was that he’d ruined my day.
I feel like I’m failing him. Failing him at the very last hurdle.
100 Days Left of Treatment
So as you can imagine, March 18th can’t come soon enough. I am done. Bilbo is done. We have all had enough.
The end feels so close but I am acutely aware that March 18th isn’t some magic date when we can wipe cancer out of our lives.
We don’t really know what comes next, we don’t know what side effects will be long term? Normal doesn’t exist for us anymore, we can’t go back to the life we had. We will have to figure out a new path and work out what role cancer has in that future. And if I’m being honest it is starting to terrify me.
I want to be excited, we’ve even started planning Bilbo’s end of treatment party but my anxiety is through the roof, thinking about all the what if’s.
I can’t control, what I can’t control. Instead we’re lowering expectations for December. For us the most important thing is making sure the boys enjoy as much Christmas magic as possible. We spend time together as a family and we get Bilbo feeling better.
And yes, that includes the bloody Elf on the Shelf – you can follow along with his antics on our Instagram account.