Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hello everyone,
Julian is still recovering from his induction round of chemo. We are very hopeful that he will be in remission so that we can move straight to transplant after his counts are up. I am wondering whether any of you have had the problem of unsolicited advice from people who are concerned about whether your doctors are doing the right thing? I have a facebook page for Julian for friends and family to follow. Yesterday I got a message from a parent of another child with leukemia (I believe this child actually has ALL, but that is not really the point). This parent was trying to convince me that I should be pushing Julian's medical team to reconsider the use of my baby's cord blood (even though that could result in a delay of several weeks, and we do not know that this baby will be a match). He claims that he has done research for his own son (whom he feels does not have a suitable donor at all) and that sibling cord blood is far superior to unrelated cord blood. He has opted not to do a transplant at all for his own son. That is not even an option in Julian's case. If chemo only did not work before, I am certain that it is not the answer now either. I am concerned, however, about his claims about cord blood. I don't want to do a internet search on my own, because I already know the anxiety it creates. I did e-mail Julian's transplant doctor to ask about his claims. He also thinks I should get second (third, fourth, fifth) opinions, but with Julian neutropenic and in the hospital, that is very difficult to do. Not only that, but I really do believe that University of Minnesota is the place to be for pediatric transplant! Anybody else been through this or have any advice (invited in this case of course :) ).
Thank you,
Jacki
Julian is still recovering from his induction round of chemo. We are very hopeful that he will be in remission so that we can move straight to transplant after his counts are up. I am wondering whether any of you have had the problem of unsolicited advice from people who are concerned about whether your doctors are doing the right thing? I have a facebook page for Julian for friends and family to follow. Yesterday I got a message from a parent of another child with leukemia (I believe this child actually has ALL, but that is not really the point). This parent was trying to convince me that I should be pushing Julian's medical team to reconsider the use of my baby's cord blood (even though that could result in a delay of several weeks, and we do not know that this baby will be a match). He claims that he has done research for his own son (whom he feels does not have a suitable donor at all) and that sibling cord blood is far superior to unrelated cord blood. He has opted not to do a transplant at all for his own son. That is not even an option in Julian's case. If chemo only did not work before, I am certain that it is not the answer now either. I am concerned, however, about his claims about cord blood. I don't want to do a internet search on my own, because I already know the anxiety it creates. I did e-mail Julian's transplant doctor to ask about his claims. He also thinks I should get second (third, fourth, fifth) opinions, but with Julian neutropenic and in the hospital, that is very difficult to do. Not only that, but I really do believe that University of Minnesota is the place to be for pediatric transplant! Anybody else been through this or have any advice (invited in this case of course :) ).
Thank you,
Jacki
You know what they say about opinions....
You follow your heart as you know what is best for your boy and if you have faith and trust in his doctors, then do what they suggest, if you have the slightest doubt, get another opinion.
Love and prayers to you and Julian.
Karen
Too many cooks.....I agree with Karen. I think it is presumptuous for a non-hematologist to even voice an opinion about therapy. Stick to the plan and NEVER look over your shoulder.
Cliff
OR Thank you so much for your concern and support. We are working with Julian's doctors and considering all of the available transplant options. His doctors are picking a donor based on Julian's individual condition. -- then just ignore it. Just drop the subject. You don't have to respond to everyone on facebook --
(I usually am just ignoring whatever miracle cure diet or tea or the like)
Im not a peds patient -- my BMT doc would have sent me half way across the country to MN if I'd wanted to proceed with a double cord transplant over my haplo transplant. He likes their protocol better than the one on the clinical trial the hospital is using to compare with the haplos.
~I
Mondreamr1, are you involved in searching for my son's donor? His doctor also shared that he has several excellent matches! Thank you all. Wishing you all the best,
Jacki
I'm so sorry to hear about your husband's job!
Please look into the costs of maintaining your husband's insurance through COBRA, at least through the end of the deductible/calendar year, versus switching to your insurance right away. COBRA can be expensive, but you may have already paid enough this year to reach a "maximum out of pocket" amount for Julian's medical costs. You wouldn't have to start a whole new deductible etc for the last few months of the year.
I hope your company has great coverage that includes U of MN. If not, however, your insurance may still cover an out-of-network provider if you request a "continuation of care" or "continuity of care" for serious medical conditions.
Praying for Julian and your family,
Monique
DaveJ
Wishing the best for your little man,
Lora
I am sorry that your husband has been laid off work.
I agree with Monique, please check into the COBRA coverage, it is usually about 150% of the premium, but I think the cost may be worth it for the fact that Julian can continue to see the same doctors and go to U of MN, unless your coverage will pick up where his left off.
Julian continues to be in my prayers.
Karen
I always say ask lots of questions, so you understand 100% what is happening and if there is anything you should or could do to help.
Whilst there are lots of questions we can answer I always just keep to extra things we did which had no medical doctor related (like water , strength, eating) Those are things that help on top of what your doctors are doing.
Good luck and just keep on asking all the questions and never feel like you are asking too many
xoxo
I wish I could advise on the insurance thing -- I know that the whole reason for COBRA is that people do not get left in the lurch in situations like yours. But if you have another option with you employer, that could be better. Again, it is a matter of getting all of the alternatives and the pros and cons of each in front of you. When you do that the decision usually becomes quite obvious.
Take care -- things will improve -- dave
That is great, it is one less thing to worry about.
Yes I believe God is watching out for you.
Julian continues to be in my thoughts and prayers.
Karen
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