BMT D-6 to D-3

The last couple of days Ellie has started some of the major medications and chemotherapy to condition her for transplant. It’s been a hard few days and Ellie is really feeling the effects of the Busulfan chemotherapy. Its didn’t take long for side effects to start and she has been constantly nauseated and vomiting. The team continually change up the medications to find the balance and I think we recently had a breakthrough with the vomiting as that has slowed, however the nausea remains. She has stopped eating and drinking so she’ll probably be on nasogastric feeds and Total Parenteral Nutrition by Sunday/Monday. We’re lucky she hasn’t had any of the major and rare side effects and we have our fingers crossed it stays this way. We know that she is going to get sicker, but we still hope for no major complications.
 
It's a strange feeling to look at her in her sick state and try to imagine what’s happening inside. It’s not just a matter of being nauseated; we know her bone marrow is being completely destroyed right now. I can’t imagine what that feels like. I tried saying to her to just close her eyes and rest ‘because when I feel really sick, it helps to close my eyes and try to sleep.’ I felt like an idiot after saying that as any sickness I have felt can never compare to what she’s feeling right now.
 
We have a laminated copy of the ‘game plan’ in the room and I have attached a photo. So far Ellie has started:
 
Pentamidine to prevent PCP
Lipo Amphotericin for fungal infection
Ursodeoxycholic acid and Defibrotide to prevent VOD for which Ellie is high risk due to previous Gemtuzumab
Levetiracetam to prevent seizures brought on by Busulfan
Cefapine for broad spectrum antibiotic
Metoclopramide, Ondansetron, Cyclizine, and Aprepitant for nausea.
 
All of this is to combat the effects and complications caused by Busulfan chemotherapy and ATGAM. ATGAM is an immunosuppressive drug that boosts the effects of the chemotherapy to ensure it destroys the immune system and any remaining lymphocytes that could reject the donor cells. Over the weekend, the Busulfan will cease and Cyclophosphamide chemotherapy will commence, along with Cyclosporin for GvHD prophylaxis.
 
Ellie is now ‘shutting down’ like she did during the horrific induction therapy in 2021. However, she is doing so with what seems to be more of an awareness of what’s happening. She still communications with some head nods or frowns but that’s about it. But it’s all we need for now; just to know she’s still here with us.
 
The whole operation is much more tightly controlled than previously. Every drug needs to be given at very specific times and before administering them, the nurses warn us what to expect and what ‘could’ happen. Our head oncologist, who lucky for us is also the head of transplant and soon to be head of the department, offhandedly remarked ‘yeah I’ve already yelled at someone for not having one of the meds ready in time.’ I think it was a matter of about half an hour but it meant everything else had to be pushed back. He’s generally unflappable but we can see these types of situations are very stressful for the staff. During some of the more dangerous meds, we practically have a nurse in the room with us all the time, watching for any strange side-effects and constantly doing observations. It’s very tense. 
 
I realise we didn’t provide an update on the possibility of brain radiation. It’s a long and complicated (and emotional) story. The short story is we’re not doing it because it can’t be determined if it’s actually necessary; the side effects of ‘significant irreversible cognitive decline’ are life-long and too risky for something that is not indicated; and there is no evidence to show that it would benefit AML in the brain (even if it were still present). The fact is that AML in the brain like Ellie had is so rare that nobody in the Kids Cancer Centre has ever seen it that we’re aware of, and there is no data on its treatment. Experimentation on the brain, knowing the cognition side effects is not something we’re comfortable with.
 
Despite everything happening, we’re impressed with Ellie’s attitude. Everything is a struggle – meds, mouth care, showing, toilet – but she’s doing it all the best she can.
 
D-0, Transplant Day is Monday 4th July.
 
PC