Preparing for Transplant and MRI Update

Ellie has improved over the last week, with her post-chemotherapy symptoms stabilising. She no longer has persistent fevers and after taking eye drops up to every two hours (while awake and through the night) her chemical conjunctivitis subsided. We are now waiting for her blood counts to recover and neutrophils to re-generate in hopes that she can come home for a week or so before we commence BMT conditioning week.
 
We have now locked in the BMT dates (6 weeks commencing 27 June plus one week of conditioning commencing 20 June (more chemo)) and have a fairly good idea of what we might be in for. We had a 1.5 hour meeting with the transplant coordinator which was very helpful, and read the 120 page BMT book on what to expect. It’s a sobering read; I don’t recommend it. Next week we will have the final information and coordination meeting with the whole oncology team to go over how everything will work.
 
The thought of BMT is extremely daunting and I will save the details for a separate post after our final meeting next week. However, what we do know is that Ellie was matched with a great cord doner which is a better outcome than a typical harvest from mature bone marrow. This means the stem cells will be drawn from a frozen umbilical cord which was described to us as ‘pure, rich goodness’. The cord donor is from a little girl in the USA and is an 8/8 Human Leukocyte Antigen (HLA) match or 100% HLA match. Often, BMT is conducted with partial matches if a perfect match cannot be found. Apparently, the team were offered a partial 7/8 match which they tentatively accepted, pending finding a better match. The partial matching donor cord will now be held in reserve in the event that Ellie’s body rejects the initial transplant. We’ve been told this is highly unlikely due to the amount of chemotherapy she has already endured (notwithstanding the additional chemo she needs to have during conditioning week) and it’s believed that her immune system will not have the capacity to fight and reject the donor stem cells. Interestingly, Ellie being O Pos and the donor being O Neg means Ellie’s blood type will not change.
 
Aside from the daunting thought of enduring BMT, we also have a degree of anxiety over Ellie’s neurological situation. She had her second MRI this week and while the results were good, they are not definitive. I have attached a photo of her before and after shot MRI. You can see in the before (right picture) the large chloroma mass. This was a significant chloroma of AML cells surrounded by haemorrhage and swelling which cause the brain to shift (seen by the midline movement right). The after shot (left picture) shows significant reduction in the mass, and repositioning of the brain. The residual lesion (small black sphere LHS) is described in the MRI report as appearing to be an ‘ill-defined area of slightly hypo-intense signal.’ This is PhD speak for ‘we don’t know what it is, but it looks better than it did before.’
 
The assumption is that systemic and intrathecal chemo has destroyed the AML cells and what remains is necrotic tissue. If true, that’s great. But there is no way of knowing if there are active AML cells without biopsy. We’ve been told biopsy is too risky because of the extremely difficult position of the legion.
 
Our concern is that if we put Ellie through the torturous BMT to (hopefully) cure her of blood cancer, she could still have cancer in the brain. This is clearly not the ideal situation going into BMT. Our understanding is there isn’t much else we can do about the brain right now and we need to focus on BMT. Brain surgery hasn’t been discussed with us in any detail yet and it’s not something we really want to think about.
 
We will hopefully have more information on our options to treat the brain, and final confirmation of BMT details next week. We will keep everyone updated.
 
PC