I was hoping for additional information, but I do not want to delay my update any further. My transplant has been delayed for now.
To answer the question of why, I do not know, and I do not have further information. This baffles many people, but the process is completely anonymous and voluntary. I am not allowed to interact with my donor because I could influence his decision. I understand and agree with this concept; however, what confuses me is that fact that my own physicians are also kept in the dark. My oncologist is not allowed to communicate with the donor's facility. Based upon his limited knowledge of the situation, he does not think that the donor has backed out. Usually, the altruism that carries a donor this far, brings them to follow through with their commitment. Moreover, if the donor did change his mind, he would be unresponsive when called. We can tell that the donor is still responding.
This brings us to Plan A: continue with the initial donor and hope that things fall in line next week. This would be ideal. However, the doctors have initiated Plan B: an expedited search for a new donor. Based upon my ethnicity, a new donor should be found as early as May, and I would continue with my transplant next month. Plan B is not necessarily bad, but it requires that I stay in remission for another month, something that is not guaranteed with my type of cancer. Plan C is also in the pipeline: use my father who is a half match if another suitable donor is not found quickly. This is substantially worse than either Plan A or B, and I doubt it will come to this. Using a half match is controversial and could greatly increase my risk of complications. Also, the durable efficacy of a half match is not as high--per expert opinion.
I will provide more updates as I receive them. For now, the silver lining is that I now have more study time before exams. If things are delayed long enough, maybe I can take a few exams at home rather than in the hospital and under the effects of drugs.
WoW...did not expect this news. Keeping you in my thoughts & prayers that things work out. As a spiritual person, I do believe that God has you in 'his' plan, even when the doctors & others do not. Hold the Good Thought ...Peace
ReplyDeleteI am so disappointed to hear that your doctors can't interact with the donors. Hearing a story about a real person and a real situation brings so much to the table when someone is deciding to go through the hassle. I was amazed at work today, when I was talking to nurses and trying to get them to sign up for Be the Match. "I don't have time for that". Yeah, well, people don't have time for cancer! If your docs could talk to donors about your situation, it may help persuade them that this is a life in the balance and they have the ability to help. I know your donor possibly didn't back out, but still, after some disheartening conversations today, some people who should know better don't even have the altruism to do a cheek swab.
ReplyDeleteThanks for spreading awareness Margy. Honestly, with the attitude that person had, I'd rather she not sign up. After experiencing this myself, I would rather have people refrain from signing up if they are not fully committed. I do not expect people to rush into registering, but I beg of people to stick with it or not do it at all. There is nothing worse than being ready for a transplant only to have a donor back out. I believe my donor is solid and his doctors are just being thorough with the tests. However, I have seen people die waiting for flaky donors. Had the oncologist known the donor would back out, they could have just done chemo and hopefully prolonged the patient's life until a suitable donor was found.
DeleteSorry for the rant, I will be praying for you. I am updating my donor status with Be the Match. I was matched at one point, but they declined me because I was pregnant at the time. Updating now, so feel free to take all the marrow you need. :) I will keep on praying for you.
ReplyDeletepraying for you brother. Is ethnicity a factor in getting a donor match? I'm wondering if I can go in for a donor candidate test of some kind.
ReplyDeleteHey Yeo! Unfortunately, ethnicity is a factor. Also, sorry for deleting your posts, but they were only doubles. I wouldn't delete the posts otherwise.
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