40 days of cancer…
10 more days
And like that another 10 days have passed, we’ve now hit 40 days of fighting cancer. It feels like yesterday I was writing 30 days of cancer… Time flies when you’re having fun – hmmmmm hardly BUT weirdly for the last 2 days that is actually true.
We’ve enjoyed some fun times as a family, more Christmas festivities and some laughs. And we’ve needed the last few days, we’ve needed the distraction.
After writing things I hate about cancer I was in a pretty dark place. I was feeling so angry and so out of control with the whole situation. The post was quite cathartic and actually did help.
In the last 10 days the following things have happened…
Bilbo has been to school for 6 almost full days, he’s only missed a few hours for routine appointments. This has been amazing and surpassed all our expectations. He’s enjoyed being back with his friends, he’s talked nonstop about his teachers and can’t wait to go back again next week. Sadly this week he won’t be making a full week (more on that later)
After 5 weeks of steroids Bilbo tipped the scales at 3 stone 11lbs, the constant eating increased Bilbo’s weight by a stone. BUT already with stopping the steroids on Tuesday, the weight has started coming back down. Along with the steroids stopping we’re starting to get our gorgeous boy back.
The steroids aren’t pleasant, the side effects are many. Mood swings, constant hunger, cravings are all pretty standard. But I felt like Bilbo lost interest in the things he loves the most. Playing with Lego, having long showers, playing with his toys. We’ve been gifted so many wonderful things to help alleviate the boredom of being at home/hospital, Bilbo had little interest in any of them.
BUT he’s back
In the last few days our little Bilbo is back. He’s played Lego, rearranged his Jurassic World Lego, he’s engaged with his Lego advent calendar. He’s rearranged his Christmas tree, he wants to have a story every night. In fact for the last few nights he’s not really wanted to go to bed at all. He has endless energy and is on top of the world.
Last week we enjoyed a double whammy of Santa visits. This week we prepared our advent window, our self imposed theme this year was when Santa got stuck up the chimney.
And we headed to Oxford for the Kamran ward Christmas party today. Both boys nanny and I had the most wonderful time, thank you to all the staff, volunteers and people involved on putting on an event that was simply perfect. We had the best time.
We’ve enjoyed time as a family chilling, dressing up and playing and sleeping in boxes. If it wasn’t for Bilbo’s appearance and the medication we have to give him every night and at the weekends you’d think we were back to normal.
And that is why cancer is a cruel bastard
We got complacent.
Bilbo being at school felt normal, hanging out at home with limited hospital visits felt normal. Being at work felt normal.
But on Friday at 11:05am I felt like i’d received the diagnosis all over again. We finally got his MRD test results and they were not what we wanted or even expected.
The thing is Bilbo’s bloods have been going in the right direction, he’s got bounds of energy. We dared to believe we’d be taking that path of least resistance, but sadly we are not.
I attempted to give people who are interested an insight into what our path could look like our new normal. But to recap Bilbo has Acute lymphoblastic leukaemia (ALL).
Acute lymphoblastic leukaemia (ALL) is the most common type of childhood cancer. Around 400 children under 14 years old are diagnosed every year. It’s one of the most treatable cancers in children.
There are 3 types of treatment regimens:
Based on the results of tests your child had when they were diagnosed, their age and their white cell count, your child will have one of three treatment plans, or regimens.
- Regimen A uses the lowest intensity of treatment. This is the initial treatment plan offered to children under 10 years old and children with a low white cell count at diagnosis.
- Regimen B is intermediate intensity. This is the initial treatment plan offered to children over 10 years old and children with a higher white cell count at diagnosis.
- Regimen C uses the highest intensity of treatment. It isn’t used at the start of treatment, but children may be moved onto this regimen later if not enough leukaemia cells have been cleared following the first part of treatment on regimen A or B, or if the cytogenetic tests show that there are certain genetic abnormalities present in their cells. If a child needs to be moved onto regimen C, they won’t be moved back to a lower intensity regimen.
Over a week ago Bilbo had his MRD test to find out how many leukaemia cells are still in his bone marrow. We wanted to get the results that would mean he could stay on Regimen B.
If there are a low number of leukaemia cells present (this is called MRD low risk), your child will stay on the same treatment (regimen A or B). If there are a higher number of cells (this is called MRD risk), the treatment will move to the stronger regimen C.
On Friday morning we found out that Bilbo moves to Regimen C. And just like that our bubble was burst, I cried. I asked a million questions of our consultant who did everything to help me understand this wasn’t bad news, I phoned Rich and cried again, I phoned my mum and cried again. I’ve cried multiple times this weekend. I can’t stop crying, feeling like I want to cry and when I can’t cry I just get really F**King angry. Mostly at Rich.
Nothing prepares you for these set backs, or pieces of news. No one prepares you for how to deal with or react to new news, reactions from others or the different stages of cancer. We were thrust into this lane, we didn’t get a choice about this journey and there is no guide book. Every parent you talk to has their own battle, their own scars – what we have in common is trying to survive each day, each stage.
So to my surprise when I walked into the Christmas party today I was not prepared for the way it would make me feel. I was so anxious, my pulse rate was high, I could feel my chest tighten. My eyes were moist. I couldn’t process that we were about to walk into a Christmas party for children battling cancer. How were we here? How is this our life now?
Then the realisation that there are so many poorly children in that room, so many families impacted. Siblings like H suffering the effect of cancer too. I excused myself to the toilet and I bawled my eyes out. Then as ever I dabbed my eyes, touched up my makeup, put my big girl pants on and demonstrated that big smile i’m so used to wearing.
F**K You Cancer
What does this mean in reality for Bilbo?
Regimen C is 10 weeks vs 5 weeks.
It also means a very different phase 3 – interim maintenance
Phase 3: interim maintenance
For children on regimen A and B, this third phase lasts for about two months and gives a break of less intensive treatment between consolidation and delayed intensification (phase 4). The main treatment during this period will be oral chemotherapy, and your child will be able to stay at home for most of the time.
Children on regimen C will have a more intensive course of chemotherapy involving methotrexate. Your child’s doctor will explain to you exactly how this treatment is given because this will depend on whether your child is taking part in the UKALL 2011 clinical trial or not.
Full information about Phases 1-5 from the bloodwise website are here.
The results have hung over us all weekend and they’ve utterly knocked my stuffing out. On Friday night I went out for drinks with my great friends Lex and Jo, it felt great (the hangover not so much) but then again on Saturday i’m reminded that we’re living this cancer nightmare.
Do we know what this will truly mean in reality for Bilbo – NO! The fact he’s been at school for an entire week is fairly extraordinary. Bilbo could continue to smash cancer treatment. He might not get super tired, we might avoid all the nasty winter bugs…they’re all pretty big mights!!!
I’m some what jaded from getting my hopes up last week. So do we prepare for the worst? NO WE F**King don’t because we’re Godber’s and we’re facing up to bastard cancer head on. We will kick its ass, one day at a time.
Our consultant reminded me this isn’t a set back it is merely and insurance policy to make sure that they give Bilbo the best chance of eradicating every last bit of cancer so he won’t relapse.
A few extra weeks of treatment now so we don’t end up with a relapse later is how we are looking at it.
Week 6 or 7
Tomorrow we will be starting our week 7 but officially week 6 of treatment.
We’ll be back at Oxford, Bilbo has a general anesthetic for a lumbar puncture and treatment planned. We’re introduced to a new chemo medicine. A dressing change on his wiggle and a general check in.
The rest of the week Bilbo has local treatment with our Milton Keynes community nurses. We’re going to try and make school work around this. We will also find out what Christmas looks like, when will we need to be in and out of hospital.
The one constant is that we remain frustrated that we can’t plan anything.
The other constant is that Bilbo is a bloody legend – proud doesn’t even cover how we feel about him.