Day 127: Waiting Game
What they don’t tell you when you get the C diagnosis is there is a lot of waiting. Cancer is a continuous waiting game.
The day Bilbo was diagnosed felt like the longest day of our lives. Longer than waiting for Bilbo to arrive in to this world ( And for the record he was 10 days late).
We knew it was Leukaemia on the Monday night but the actual big talk needed to happen with both of us the following day. On the Tuesday Rich waited in traffic for 2hrs and then by the time he made it to the ward, we then waited hours to have “that talk”.
127 days in…
127 days have passed and Rich and I will be having “that talk” again next week.
Bilbo finally had his MRD test done on Monday and so now we wait for the results. The consultant says it could be as soon as Monday, we’re expecting it to be more like Weds/Thurs. We’ve been asked to keep our diaries flexible and will head into Oxford without Bilbo to talk about next steps.
MRD Results and the trial
I’ve talked a little bit about our next steps but a reminder for those who don’t know. We’ve opted to go into the trial, you can read more about it here Day 65 Decisions Decisions – clinical trials. I can’t believe it was almost 2 months ago that we talked to our consultant about the trial. I feel like we’ve been waiting forever.
When we get the results of the MRD next week they will randomise us for the trial.
It will be a big day for us. The outcome impacts everything about the rest of our cancer journey. And there is lots for us to think about and prepare for. So sleep is in short supply and anxiety levels continue to be high.
How’s Bilbo doing?
To quote his teacher today, “he’s been very energetic/hypo” I can’t help but laugh at this because what he’s seeing is the real Bilbo. Sadly from almost day 1 of starting school Bilbo was starting to be poorly. So he was never really his actual self.
Right now he’s clearly bringing his whole self to school.
He’s managing school and loving it! But there is always something in the background niggling and reminding us he isn’t the same old Bilbo.
On Friday he was sick and it seemed to knock his stuffing out over the weekend. He seemed quite lethargic. We just took the weekend slowly…
We welcomed a visit from Uncle Gaggin Bilbo and H were so excited about his visit from Germany.
Food is still a battle. His taste buds are improving every day and he’s been starting to try different foods. Spaghetti bolognese, chicken curry and chicken noodles are his current favourite. Everything has to be homemade.
But the appetite is coming back and we’re working on fattening him up.
Questions, questions, questions…
Small people have curious minds and Bilbo is no exception. The challenge for us is that all his questions revolve around cancer. And some of them are really, really hard to answer.
Why me? When will I be better? Why can’t you be poorly instead of me mummy? (My response: “if I could swap places with you darling I would in a heartbeat”) Why can’t Harrison have leukeamia instead of me? When can I get my wiggle out? When am I have my sleepy medicine? (this is what Bilbo calls a general anesthetic) Why do I need to have sleepy medicine?
I find the constant stream of questions hard. Not least because I worry that i’m answering them in the right way.
On Monday Bilbo had his first freak out about having the general anesthetic. Since he’s had his wiggle, he’s always been really good at having “sleeping medicine”
I normally go with him into the treatment room on the Kamran ward. He sits on my lap we go through his details, they put the medicine into the wiggle and he falls asleep. The team help move him to the bed and I leave to wait with Rich.
Bilbo has now had six general anesthetics. He knows the drill, but on Monday for some reason something triggered him. Bilbo screamed and tried to run away from me and the doctors. “You’re not having my wiggle” he cried.
I finally managed to hold him tight, his head on my neck so he couldn’t see what was going on and eventually as the sleepy medicine took over his grip loosened as he slipped into a deep sleep.
F**k You Cancer
These are the moments when I get so angry. So angry at cancer. The anesthetist warned us that Bilbo may wake upset because he had been upset when he’d gone down.
In true Bilbo style he woke up with no issues, in fact it was like it had been erased from his mind. He talked about how he just went to sleep. I bloody wish I could erase it from my mind that easily. But I love the resilience kids have.
We are back on nightly chemo the 6MP and the weekend antibiotics continue. Bilbo is doing a great job at just accepting this is our new normal.
How are we doing?
The last couple of weeks have been tough. The waiting has taken its toll. The lack of sleep and the what ifs that go around your mind in the middle of the night are exhausting.
But we’re plodding along. I’ve finally started looking after myself. I want to thank one of my besties Lisa for holding my hand to get started. I’ve picked up doing The Body Coach HIIT workout and running. I’m alternating between HIIT, Rest, Running, Rest and then repeat. I know the first week would be the hardest but I did it, so yey me!
Harrison is continuing to be awesome, he’s so eager to learn and explore. He’s really into shapes and wanting to draw and write. And he now has a big boy bike just like Bilbo.
What next?
We wait…we wait for the phone to ring to arrange our appointment to have “the talk” but before that we will continue to be as normal as possible.
Except, not completely normal because tomorrow we’re taking the boys out of school/nursery on World Book Day to go see one of their favourite books brought to life, a Julia Donaldson staple – Zog. Because why not, life is for living and making magical memories.
