A friend received this and I wanted to share with you:
My daughter was diagnosed with myelodysplastic syndrome in late October 2011. At the time I had never heard of this disorder nor did I realize how it would change our lives. MDS is very rare in children, it is failure of a persons bone marrow. Bone marrow make cells that turn into red and white blood cells or platelets. As her bone marrow fails it brings her closer to acute myelogenous leukemia or AML. Not much is known about MDS, usually men in their 50’s get this and research is ongoing to understand the disorder in children. The only treatment is a bone marrow transplant, it is not a cure as the MDS could reoccur. There are many risks associated with the transplant and all who under go this do not survive. Finding a donor can also be very difficult. We have been blessed in that her brother is a match and he agreed to be a hero and save his sister’s life.
February 6 my daughter was admitted for the bone marrow transplant. She turned 15 on the first day she received chemo. This process means she will be in strict isolation for 6-8 weeks. She is not allowed out of her hospital room and a limited amount of people are allowed to visit. She will receive high doses of chemo to kill off all the cells in her bone marrow. As most people know, she will lose her hair, and can get mouth sores, experience pain in her bones, be nauseated and vomit. After the transplant many new risks will present themselves, such as possible rejection and all the side effects that go along with the medication required to help prevent the rejection of her brothers bone marrow.
Once she gets home she will be in isolation for 6 – 8 months. As you can imagine that isolation can be devastating for a teenager. Rach has been very brave throughout discovering her diagnosis along with the beginning of her chemotherapy. She is optimistic and plans on turning all of this into something positive.
My daughter has only asked for a few things after learning what challenges and treatments lay ahead for her. The first was to survive the transplant, and go on to live a long life. The second is that she wants to educate people about MDS and all that goes along with the diagnosis. She feels the more people hear about it, discuss it among others then perhaps more research could be done.
The last thing she requested was to see if she could get a 1,000 cards from people and teenagers like herself from around the world. Our hope is that this email gets forwarded to people from their contact list. She is hoping this could even reach ELLEN so someday she would have the opportunity to go on her show and educate people about MDS and bone marrow transplants. If this were to reach Justin Bieber, Racal Flatts or Taylor Swift that would be awesome too.
If you are willing please forward this email and send her a card or letter to:
P.O. Box 1583
Hilliard, Ohio 43206
Thanks for taking the time to read it and I hope you can send a card.