Week 10: Here we go again…
On Monday we start week 10. It has not escaped my notice that we will in fact be starting week 14 on Monday. But for Bilbo’s treatment plan we are have only reached week 10.
Why the difference?
Over the course of Bilbo’s treatment we’ve had a number of breaks. And so the weeks only correspond when he actually has treatment.
What is going on in the Godber household?
- Bilbo has been to school 7/10 days in the last two weeks
- Rich and I have both been to work
- Bilbo’s appetite and taste buds have gone back to normal
- I attended the CLIC Sargent roadshow on Friday
- We’re continuing to live our best lives
- BUT we’re dreading the next 5 weeks
- Anxiety levels for me are at an all time high
Bilbo has been to school 7 out of 10 days so far. This is unbelievable and we’re so proud. He’s wanted to go and has only missed days when it has been absolutely necessary.
He’s happy (mostly) and we’re shielding him as much as possible from what is going to happen next. This morning I talked him through the different phases of treatment. And what will happen next:
Week 10: 21st Jan
We kick off in Oxford on Monday with Cyclophosphamide this has to be given alongside IV fluids. For those keeping up ( I know there is a lot to remember) this is the one we didn’t get anti-sickness for and made Bilbo sick from Oxford to Milton Keynes. We won’t be making that mistake again.
Daily chemo at home will also start with the 6MP (which I give him) and Cytarabine for X4 consecutive days from Tuesday.
Week 11: 28th Jan
We continue the daily 6MP and Bilbo will have the Cytarabine for X4 consecutive days again.
This is the week that Bilbo started to feel and be very sick last time so we will monitor him closely. We have anti-sickness but it didn’t seem to be that effective in keeping his nausea at bay.
Week 12: 4th Feb
6MP and Cytarabine finish and we have vincristine through his wiggle and pegaspargase injection at hospital.
Week 13: 11th Feb
This week we will just have the vincristine through his wiggle.
Week 14: 18th Feb
Bilbo will have his MRD and then we wait… very likely they will give us a few weeks off.
This will allow Bilbo’s blood counts time to recover. It should give us time to get his taste buds and appetite back too.
And once we get the MRD results we will be able to join the trial and take the next step.
He is asking a lot of questions, why am I sick? when will I be better? why aren’t other people sick? how long will I be sick for? Why do I feel sick sometimes? Why does food taste weird sometimes? When will Harrison get a wiggle? if other children are poorly he asks if they have poorly blood? And will they need a wiggle?
When will we be able to go on holiday? Can you ask the doctor on Monday if we can go on holiday soon? Can you buy me a special suite so I can go swimming with my wiggle?
All incredibly painful and challenging questions to answer.
He’s announced multiple times his taste buds are back. Maybe they are, but he is still being very picking about his food and there are many foods including chocolate he’s still not really enjoying.
But he has an appetite, yesterday he ate two bowls of cereal, 2 crumpets, his actimel yogurt drink and has then grazed through the rest of the day. Today he’s managed to eat some of my butternut squash risotto.
Commuting to London
We’ve been collecting donations for CLIC Sargent since Bilbo was diagnosed. I was fortunate enough to be able to attend their London roadshow. I’ve written about it here: CLIC Sargent – Young Lives vs Cancer.
We are dreading the next 5 weeks…
To say we’re worried about the next 5 weeks is an understatement. We are dreading it because we know what to expect, the nausea, the sickness, the anger, the frustration we know it will all return at any moment from when we start again on Monday.
We’re more prepared this time. Our plan is to take Bilbo’s lead. He will tell us when he wants to eat and we need to refrain from putting pressure on him.
What scares us…he’s smaller, lighter and looks more tired than at the start of this phase.
His hair looks like it is growing back in patches but as I look at his hair I notice he is now losing all his eyelashes. Cancer is the gift the keeps on giving.
We continue to live our best lives
The only way we can protect Bilbo from our fears, our concerns is to remain as positive as we can. Of course this isn’t always easy.
We need to think carefully about when will be the right time to keep him home from school. When Bilbo was sick last time it was the Christmas holidays so there was no expectation he would be at school. The sickness was so unexpected and we were never sure when it would strike.
So whilst Bilbo is well, we’re making the most of any normality we can. Tomorrow is another day and right now we can only take each day as it comes.