I Don’t Know Where to Start

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.

Love, LB

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.

8 thoughts on “I Don’t Know Where to Start

  1. My heart goes out to both of you! This is so much to handle and process; ask for help from friends, family, everyone you can so that you can just focus on your treatment. I wish I could help somehow. In my cancer support group, in Ontario, the women often argue that we can always ask of our doctors that they provide a second opinion and more options and treatments. One woman’s life was saved, at least thus far, by being put on a clinical trial at Princess Margaret Hospital in Toronto. I’m wondering if you can ask further about clinical trials for Luke. In your own case, and if the doctors recommend it, I would consider doing the autologous stem cell transplant. You’re young and this will make it better for you to get through the procedure; it could also help to attack the cancer. The doctors should be able to give you information on why they believe it is better for you to have the transplant than not: if your odds of recovery are better with the transplant, it would be worth doing. Both of you would need a caregiver to live in, though. Lastly, have you looked at the Leukemia and Lymphoma Society of Canada website? There are online discussion groups for both American and Canadian patients, and you could post a question to other leukaemia patients as to what their experiences have been when presented with the complications that both you and Luke are experiencing. You might get some helpful feedback. I have been helped enormously by this website. I’ll be thinking of you and am sending all positive thoughts and prayers. Carolyn

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  2. Now, I don’t know where to start. I find it overwhelming to believe you are both in the middle of this fight, trying to stay strong for each other and for yourselves. There are many who know about this Herculean struggle, think about you, and pray for you every day. If feelings and thoughts could wrap you both in a gentle embrace, you would be well on your way. Please reach out if there is anything anyone of us can do. Even if it’s nothing more than listen.

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  3. I am heartbroken at hearing this news, but on the other hand, I’m incredibly inspired by your strength and determination. NEVER give up hope because miracles happen every. single. day. Sending you hugs and well wishes for successful outcomes for both you and Luke ♥️

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  4. Oh my heart. You two have been facing an uphill battle. Sending you lots of positive thoughts and keeping hopeful for good treatments, new trials for both of you. My son had an allergic reaction to the peg-asparagenase, changed to courses of injections of Erwinia but that medication became unavailable and so subsequently he then did three treatments of peg asparagenase desensitization, which basically gives him that med IV over 10 hours instead of two. (The last one done last week). Sending you lots of hugs and care.

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  5. It makes me feel so much better to see people with real experience knowledge about Lindsey and Luke’s challenges responding with suggestions for them to look into, particularly as some of you have been through similar situations and treatments. Some of your ideas for investigation and contacts you have made will give them a few new leads. I hope your words of small and large successes you have made will give them hope to keep asking and looking for solutions they might try. I have zero first hand knowledge of the disease but they know I hold them both close to my heart and hope so much things take a turn for the better soon.

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  6. Hey Lindsey. So sorry to hear about Luke and the battles you are both facing. I can’t even begin to know what you must be feeling, but it totally makes sense that you feel lost and isolated and as you described, your heart and head feel like they are drowning. Do you have a counsellor or therapist that you can talk to? A counsellor/therapist that specialises in clients dealing with illness can be a great source of support mentally. You can share with them your fears with complete honesty, without worrying if you will upset them. Sometimes talking with family and friends can be difficult, because you don’t want them to worry as well, so you protect them by keeping those darkest fears to yourself. That is a burden you certainly don’t need to carry, when your body is already going through so much. If you ever want to call/email/contact me to vent, cry, or just chat, please do. I may be all the way in Australia, but I can at least provide emotional support. I’ll be thinking of you both and wishing you well. Zoey is such a beautiful girl! It’s so great that she brings you such comfort and joy. Pets have such a positive effect due to their unconditional love and reliance on us to be them for them. Xxx

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  7. I’m so sorry to hear of the set backs. We don’t know each other, but I read about your blog on CBC.
    I do pray for you. I hope you can find the help and support you need in this difficult time.
    Sending you both love.

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