Day 302: Learning Another New Normal
We are learning another new normal. Life has started to get almost back to normal…and I by normal I mean there are moments in a day that feel like we aren’t a cancer family. BUT then we are brought back down to earth with a bump when cancer reality rears its ugly head.
Over the last 17 days we’ve seen lots of those bumps…maintenance so far has not been plain sailing.
In my last blog I mentioned Bilbo had started being nauseous and sick. That didn’t stop we managed to get it under control by reverting back to our anti sickness plan from previous phases.
What is causing the nausea?
Our MK consultant was really helpful, she listened to all the research I had done through my networks about other families who’d experienced nausea with 6MP. She provided some suggestions of things we could try.
For example Bilbo could be experiencing similar response to hypoglycemia. One morning when we he wasn’t sick immediately he also didn’t eat immediately and then he was sick. The last thing he’s having is the chemo then his fasting for 12hrs. So some suggestions were to feed him immediately and consider moving his chemo to the morning instead of the evening.
Another suggestion was to move from the liquid to the tablet form of 6MP. This will work if Bilbo remains on the 100% dose or ever so slightly more than 100% based on the amount in the tablet form. But if he needs to reduce his dose it isn’t as straightforward with tablets as it is with liquid.
Either way we must only make one change at a time then reduce the anti-sickness to see if it has worked.
I’m not going to lie this feels me with dread. When Bilbo has the nausea and sickness it is utterly miserable for him. I didn’t want to spoil the last few weeks of his holiday so we’ve not pushed for a resolution immediately.
BUT I dread mornings and evenings when we have to measure the doses of anti sickness out and on the weekend with his antibiotics he’s having to have 7 different doses of medicine. This isn’t sustainable. And as I line up the medicines my heart sinks when I have to push them all into Bilbo.
His response is heartbreaking. He doesn’t complain, he is compliant and just takes them one after the other only sometimes raising his hand to ask for a break. I can not express in words how immensely proud I am of how he handles these moments. But i’m also terrified that one day he’s going to break and refuse…we have 933 days left of this.
So we have to find a longer term solution…
First Maintenance Lumbar Puncture
After our review with Dr Aye in MK, Bilbo was cleared to have his first LP in Oxford.
An LP is a lumbar puncture where the doctors administer intrathecal methotrexate. What this means in plain english is a needle into Bilbo’s spine with the methotrexate chemo. This dose replaces his weekly oral methotrexate and happens every 12 weeks.
Bilbo is no stranger to this procedure he’s had 13 of these since diagnosis.
But this time was a little different firstly we had the concern of Bilbo being sick. Having a general anesthetic means Bilbo has to be nil by mouth and when Bilbo wasn’t eating in the morning he was being sick. We agreed with our doctors that the best thing was to wake Bilbo up at 1:30am and feed him some toast.
Secondly we needed Bilbo to try out using gas to go to sleep.
Normally I walk Bilbo into the treatment room, he sits on my lap, they fill his wiggle with sleepy medicine. He falls asleep on my lap and then the medical team move him onto the bed.
But with no wiggly we need a different way to put Bilbo to sleep. If Bilbo can’t tolerate the gas they will need to put a cannula in place for the sleepy medicine. We have a terrible track record with cannulas.
The gas will mean he can fall asleep peacefully and they can add the cannula once he’s asleep.
Preparing Bilbo For Life With No Wiggle
We’d spent a lot of time talking to Bilbo about the gas and how it would mean he can get rid of his wiggly. When we arrived on the ward we talked about it again but he was distracted by the pull of the PS3 and the playroom.
The lovely play assistant did get me a mask to show Bilbo – he wasn’t interested.
Since they were worried about Bilbo being sick we were second on the list. (The list is the order in which all the children who need the IT MTX get called for their procedure, normally it is in age order)
We walked into the room and Bilbo did have a wobble. This isn’t unusual especially when he hasn’t been in for a while. Picture this a clinical room with lots of equipment and mostly unfamiliar faces (not always the same nurses, doctors or anesiatists) and you’re five years old. Pretty scary even for an adult…
I approached it as we always do calmly. Or at least that is what I show Bilbo.
I held him tight and I ssssshhh’d him like I did when he was a baby to get him to sleep. This helps Bilbo to breath and he calmed down. He breathed in the sleepy air and before we knew it he was asleep.
Despite 13 of these procedures and it all feeling very normal now. You are often reminded how your new normal is simply quite bonkers. Five recovery bays waiting to be filled with sleepy children. Some wake immediately want food and are up and at them. They sometimes wake up drowsy and grumpy. Or cry, scream and shout.
We’ve had it every which way with Bilbo. And you never know how they are going to react, on this occasion he was SUPER grumpy. Not sure if it was the gas, him still being a bit nauseous or just one of those days. But he wasn’t playing ball.
We basically need him to drink and eat and then after 1hrs from arriving in recovery we can go home. No amount of bribing was working on Bilbo. I think it was largely because all the food options weren’t appealing to him. A reminder of how our new normal is often so bloody frustrating.
That was 2 weeks ago. Since then we’ve kept up the anti-sickness and tomorrow we have our first monthly review.
We will discuss getting Bilbo either starting to take meds in the morning or move him to a tablet. He will have bloods done and he will have his final dressing change and wiggle flush. Next Tuesday Bilbo is booked in (fingers crossed) to reverse the operation and take his wiggle out.
How’s Bilbo doing?
He’s sooooo ready to go back to school. I think he’s done with the holidays and is missing his friends. He asks daily “when do I go back to school” and “I miss my friends”
He’s worked hard on his phonics and reading. A HUGE shout out to my mum for her patience and perseverance. I know it is working as we can no longer spell things to each other when we don’t want Bilbo or Harrison to know what we’re talking about.
He’s developed an unhealthy (obsession) interest in Minecraft.
And sometime when I watch him play, dance and live life I wonder if cancer was just a dream. Of course its not and we’ve been reminded first hand this week that it isn’t
How Am I Doing?
I’m much better in many ways. But anxiety about his wiggle removal weighs heavily on my mind. Firstly if it is cancelled and then what if as soon as it is out we need a hospital stay and we need to deal with the trauma of cannulas.
We’ve taken so much of his treatment for granted with his wiggle.
I’m also worried sick about his nausea. Trying to resolve the issue without putting Bilbo through too much worries me. But so does pumping him full of anti sickness daily until the end of treatment.
Chemo Meds Nightmare
Back in December we made the mistake of leaving one of Bilbo’s chemo meds in the car. It reached below freezing and we ended up doing a 100 mile round trip to replace it. Day 50: Managing Expectations and Winging It.
We had a similar experience at the weekend but on the opposite end of the spectrum. We packed Bilbo’s chemo and anti sickness in a lunchbox with ice packs due to the heat but the crazy weather meant the car was far hotter than we could have anticipated and we were left wondering if we could give Bilbo his meds.
A few phone calls and some waiting by the phone later we were given the all clear to give him his chemo.
I wonder how many other families were measuring out chemo and wondering if they’d messed up like us at Alton Towers.
If you’d like to learn more about Alton Towers we wrote this: Review: Cbeebies Land Alton Towers with a Toddler and Baby
We see what tomorrow brings with his review. We head to Oxford on Tuesday for wiggle removal. Bilbo starts year 1 on Wednesday and then we head off to a mystery location for 5 days to celebrate my mums 60th birthday.
And all being well…we head to Ibiza at the end of the month (more on that in another post)
Lots to look forward to and lots of us learning another new normal.
September will also see us be a family with cancer during Childhood Cancer Awareness Month. Over the month of September I will be sharing various content to help raise awareness.