Aplastic Anemia Info HELP

Posted by rebdiebold @rebdiebold, Nov 1, 2022

My son has been recently diagnosed with aplastic anemia and has been in hospital for a week now receiving DAILY blood and platelet transfusions. He went from being an active teenage hockey player to a bed riddin little boy who lost 30 lbs in a matter of a couple weeks. They are talking about a bone marrow transplant now, hoping his sister is a match as he will not survive without it. I need advice and encouragement, please. I’m so scared I’m gonna lose my boy.

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Oh my goodness, @rebdiebold, I’m so sorry to read about what your little boy is going through…and you!

Aplastic anemia is a condition where bone marrow fails to produce blood cells and as you already know, this is a very dangerous condition. For long term correction, it will require a bone marrow transplant either from a sibling, or a stranger who closely matches his genetic profile.

I had a blood cancer that required a bone marrow transplant and it has been a life saver for me. I was 65 at the time and now it’s almost 3.5 years later and I’m in a durable remission. So I want to help relieve your fears about your son’s possible transplant journey. There is positive news, according to St Jude Children’s Hospital, a bone marrow transplant can cure aplastic anemia for life. I’ve provided the link to their article here:
https://www.stjude.org/disease/aplastic-anemia.html
For whatever reason, your son’s bone marrow is no longer producing blood. That’s the blood supply factory in our bodies. When it fails, the marrow can sometimes be replaced with donor bone marrow either through peripheral blood stem cells or occasionally with direct placement of actual bone marrow.
For the donor, this is a relatively easy process much like a blood donation…but the blood is run through a machine to collect stem cells and returned back to the donor’s body.

If your son is able to have a transplant, then he would receive these cells to replace his bone marrow. To do so, he will need chemotherapy treatments to ‘clean out’ his current marrow, making a squeaky clean environment for the new donor cells to set up housekeeping. When I got my cells, I imagined an army of Minions cruising through my blood stream and knocking out my cancer. ☺️ They’re the good guys…and, your son doesn’t have cancer.

I’m sure your son’s doctors will be testing his sister first. Siblings generally make the best donors. However, sometimes they don’t match up as well as the transplant team would like and then an outside donor would need to be found.

Is he in a larger hospital that does bone marrow transplants?

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@rebdiebold, I'd like to add my welcome. I can imagine you're very worried about your son. You may also wish to tell him about a couple of places that Mayo Clinic has where he can connect with other teens like himself. For example:
- Adolescent & Young Adult (AYA) Cancer group here on Mayo Clinic Connect: https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

And this monthly support group with other teens and young adults facilitated by a Mayo Clinic social worker:
- YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-118/

There's a meeting tonight Nov 3 and every first Thursday of the month.

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My son was diagnosed with severe Aplastic anemia his freshman year in college. He was healthy, was on the college cross country and track and field team. I feel your emotion as we thought he had mono and never expected to be hearing " we have ruled out the "C" word. The good fortune was this doctor had a " friend" - Dr. John Lister, who specialized in treating the condition that was soon to be named as idiopathic Aplastic anemia. It was a frightening ride, but let me tell you...our doctor never ever waivered. We can help your son. Fortunately his brother was a 10/10 match for being a donor. It went exactly the way the doctor told us it would. My son is 6 years post transplant. He missed one semester of school and is an electrical engineer. There is tremendous science on this subject. Yes, it is very serious and yes, things can go wrong, but it is highly specialized at every hour, day, month, year post transplant. There will be specialized doctors each stage post transplant. There is also a lot of research on matching donors and how to have engraftment occur. I will say a prayer for your and your family. Be there, be present...even if it is just quiet in a chair was your child is a patient. I treasure ever second I had with my son through his journey. He is now adulting 2000 miles away...he just returned from " borrowing" equipment for the research he is working on from the Hutchinson Cancer Center in Seattle...a world leader in stem cell transplantation. Our doctor trained under Dr. Thomas. The world is a small connected place and you must always have faith.

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@pga62

My son was diagnosed with severe Aplastic anemia his freshman year in college. He was healthy, was on the college cross country and track and field team. I feel your emotion as we thought he had mono and never expected to be hearing " we have ruled out the "C" word. The good fortune was this doctor had a " friend" - Dr. John Lister, who specialized in treating the condition that was soon to be named as idiopathic Aplastic anemia. It was a frightening ride, but let me tell you...our doctor never ever waivered. We can help your son. Fortunately his brother was a 10/10 match for being a donor. It went exactly the way the doctor told us it would. My son is 6 years post transplant. He missed one semester of school and is an electrical engineer. There is tremendous science on this subject. Yes, it is very serious and yes, things can go wrong, but it is highly specialized at every hour, day, month, year post transplant. There will be specialized doctors each stage post transplant. There is also a lot of research on matching donors and how to have engraftment occur. I will say a prayer for your and your family. Be there, be present...even if it is just quiet in a chair was your child is a patient. I treasure ever second I had with my son through his journey. He is now adulting 2000 miles away...he just returned from " borrowing" equipment for the research he is working on from the Hutchinson Cancer Center in Seattle...a world leader in stem cell transplantation. Our doctor trained under Dr. Thomas. The world is a small connected place and you must always have faith.

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@pga62, what an inspiring story to give others hope. I can imagine your fright when you heard your son was diagnosed with aplastic anemia and needed a bone marrow transplant. And then to learn that his brother could be the donor.

And look at him now - an electrical engineers and working on research with the Hutchinson Cancer Center.

@rebdiebold, how are you and your son doing?

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