OK. I know I have not been updating and that is because it has been a lot of waiting and some complications on the donor side, etc. I will try to update everything that has happened till now.
1. Blinatumomab
A long and weird name, but basically this is a special drug. It works sort of like chemo, but slightly different. It is rarely used as it can be quite costly and it is used only once the regular chemo can’t force the patient into remission. So, Hayden had a course of this drug.
Basically, Blina drug works by eating the remaining leukemia cells in the body, especially in the bone marrow. Depending on how much leukemia cells are left behind, the side effects will vary. Thankfully, Hayden was already almost at remission, so he did not have any side effects.
The course of this drug is long.. approximately 28 days non-stop, only disconnecting for him to do a quick shower once a day before continuing. It was quite an ordeal for not only him, but the guardian/parents as being stuck in a small ward 24/7 for 28 days can drive many crazy. Well, we didn’t go crazy if you would like to know. Haha.
The worse was having to celebrate his 15th birthday stuck at the hospital. We did have some desserts sent by his godmum, and some food sent by some family members, but that’s about it. He as quite sad about it but, there isn’t anything we could do about it. Hopefully can enjoy a nice break after all this.
2. Donor pulled out
This was the worst news. We were all actually quite pissed off about this. In a nutshell, after doing the first matching test (we paid USD600 for it), his matching donor decided to pull out and not donate his stem cell (which is just drawing of blood really) when he was called back for an antibody matching testing. So, we were stuck with NO DONORS.
So, the last resort was to test the parents and hope that one of us have a decent match with him. It was quite a wait as our blood samples (both parents) had to be shipped all the way to USA for HLA testing and that takes approximately 3 weeks or so to get the results.
The cost was RM1,139 per person (RM2,278 overall), which is not claimable with insurance since it was a ‘donor testing’ according to them.
So far, the results came back and they will be using mine (his mom’s) blood for his transplant, however, we are still waiting for Hayden’s HLA antibody identification and screening results before we can proceed. His lab testing is also not covered by the insurance (because it has to do with transplant/donor/blablabla) and it cost RM4,725, or RM4,620 to be exact.
3. Some good news
The best news we got so far is that Hayden has finally reached remission after the course of Blinatumomab. It has been a long journey and quite a lot of MRD testing to get the result, as seen in the latest list. So, the doctor said now just need to maintain this while waiting to do transplant.
4. And… some bad-ish news
Just found out yesterday that the hospital made an oolong. Remember how I had to pay for the RM4k+ for Hayden’s HLA antibody test? Well, the hospital didn’t send the sample to Singapore for testing. Because of this, we had to retake his blood sample and resend, and wait another 2-3 weeks for result.
On top of that, we had to do another type of antibody testing for Hayden. RM1,289 there. Not sure if will be covered by insurance or not. Usually we have to pay first, then submit for claim. Most of the time, even if the insurance covers the cost, they only cover some of it. We still have to pay for some things that actually adds up as we go for weekly visits to the hospital.
So, these are the updates so far. We are now waiting for results before can proceed to extract my stem cell and prep Hayden for his transplant. Will try to update as soon as we get the results.
Please continue to pray for him that everything will go smoothly. It has been getting harder to wait and see, not knowing what to expect in the next phase.
For now, we are trying to do some ‘normal’ things in less crowded places before he has to camp at the hospital for 1-3 months for his transplant. 1 month if all is easy with minimal side effects during grafting, 3 months if it doesn’t. We are scared and worried, but will keep praying and hope for the best.
<< He is still being his usual nonsensical self with his funny expressions, weeb talk and meme-ing all the time.