I’ve been putting off writing this blog post for a couple weeks now. My heart and my head feel like they are drowning.
A week or so ago Luke found out that there are once again leukemia cells in his blood. He has started to get severe bone pains from his marrow expanding. We are in absolute shock about him relapsing again. This time the options are limited. He has already had two transplants so he can’t have another.
To try and boost the effect of his latest transplant they gave him an infusion of lymphocytes from the donor and took away his immunosupressants. He’s been feeling really crummy this past week and his blood counts have been really low. Today he went in for an appointment and they decided to admit him. He needs to get some blood products and they want to see what is going on.
My heart is just broken. Luke’s treatment options are extremely limited. They can give him maintenance therapy to try and control the leukemia for as long as possible. The other options for his treatment would be a clinical trial. The doctors tried to reach out to get him into CAR-T cell therapy but the age cutoff is 25.
We feel so lost and overwhelmed. I am still looking to find some sort of clinical trial that will accept him but I don’t think there are any in Canada. I know I try to always be strong and positive but right now it’s really hard to even get out of bed.
On top of dealing with Luke’s treatment puzzle, I have my own to deal with. I can no longer receive the pegaspargase chemotherapy that is part of my intensification regimen. It causes me pancreatitis. As such I have a decision to make.
My first treatment option is continue this intensification phase as planned without the pegaspargase. This is not ideal as the pegaspargase plays a key role maintaining remission.
The second option I have is to do what is called an autologous stem cell transplant. They would collect my own stem cells and then hit me with high dose chemo and total body irradiation. This would wipe out my bone marrow and then they would give me back the stem cells they harvested from me. My concern with this is that because the stem cells are my own, there may be a risk of reintroducing the leukemia back in to my body. I also wouldn’t get graft vs host disease but that means I wouldn’t have the graft vs leukemia effect either.
As you can see we have a lot on our plates right now. I am feeling very lost and isolated. I just wish we had family closer to help out and to simply be there. We have so much support but I don’t even know what kind of help to ask for. Thank you everyone who has reached out. We truly appreciate it.
P.s. I’m so thankful for Zoey. She gives me a reason to get out of bed every day and I love her so much.