And so just like that we’ve completed Delayed Intensification. HURRAH!!!
Today Bilbo had his last ever vincristine at Milton Keynes hospital with some of his favourite nurses. I can’t quite believe we’ve made it this far. It has been quite the rollercoaster.
Even since my last post The Countdown Is On we’ve had ups and downs as today drew closer. His blood has been up and down and there is a chicken pox outbreak we’re trying to manage carefully.
We’ve also been busy living our best lives. doing lots of fun things and hanging out with some of our favourite people.
Bilbo made his school trip. And I was delighted to be able to accompany his class for the day. It was amazing to see him so ridiculously happy. There were moments when I had to pinch myself to see him in his favourite setting, surrounded by his friends and his beloved teachers.
How’s Bilbo doing?
We’ve been on tenderhooks about Bilbo’s nausea starting again and him losing his tastebuds. It hasn’t been great but we’re slowly coming out the other side. His appetite is getting better day by day.
On Wednesday they checked Bilbo’s blood and his HB was low. But it was border line for a transfusion. We planned for Bilbo to head into MK on Thursday for the transfusion. But then it was decided to repeat the bloods and then make a call. His HB went up from 73 to 75 and so we agreed to repeat again on Monday.
Bilbo wasn’t presenting signs of low HB, in the past he’s been very pale or super tired. He had colour but he was looking quite tired. We kept him home from school on Thursday and on Friday he headed back in. By lunchtime the school called to get him collected – he was super tired.
And as Bilbo’s bloods were recovering by themselves (YEY) his neutrophils were on the decline. For those not in the know this is the marker of how immunocompromised Bilbo is. When his numbers get below 1.0 we have to be extra careful about what we expose him to.
And so on Tuesday it was a blow to hear about a confirmed case of chicken pox. We’d kept him home on Monday as he was having bloods repeated and his neutrophils were still quite low.
On Tuesday he stayed at school long enough to attend his sharing assembly and then he was back home.
We’ve agreed with his consultant to keep him home for the rest of this week and after bloods on Monday we’ll review the situation.
This is heartbreaking as Bilbo is missing his last few weeks with the class and teacher he has grown to love so much. A bitter blow for the final stage of DI.
What comes next is a blood test on Monday. This will let us see if Bilbo’s bloods are improving. And we make a call about his return to school for his last week.
Once Bilbo’s’ neutrophils head back above 1.0 we can then start maintenance. This will start on a Monday so likely for us it will be 22nd, 29th July or 5th August.
He will have daily and weekly oral chemo administered by us. And then every 12 weeks Bilbo will have a lumbar puncture at Oxford where he gets methotrexate into his spine.
Finding Our New Normal
Over the first few weeks we will need to work to find what Bilbo can tolerate in terms of the doses of chemo. We will balance this carefully checking his blood and adjusting the dose accordingly. He will have his first LP in week 2 and then we discuss having his hickman line (wiggle) removed.
This will be a huge adjustment for us. And will be our new normal until March 18th 2022. We need to adjust to what it will mean for Bilbo to not have a line and be FREE.
And yet we are also still shackled by cancer. It will still be very present in our lives – just different.
And so today has been an emotional rollercoaster. I started off the morning saying goodbye to our dear friends who’d been visiting from Australia. (more on them in a future blog)
I’m delighted this part of treatment is over. I am delighted that some of the horrible treatment my beautiful baby boy has had to endure will stop.
I feel incredibly proud of how he’s handled himself over the last few months. The strength he’s shown and the resilience he’s frequently had to drawn on, he’s been an example to us all.