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Myelodysplastic Syndrome

imparis
Posts: 4
Joined: Apr 2010

Hello out there. I am a Mom of a 20 year old with his second kind of cancer. He first cancer was Ewing sarcoma we found it his seinor year in High school. Auguest 2007. Now because of the treatment we recevied that had made the ewings gone for now. He developed Myelodyspla and now needs a bone marrow transplant. His younger brother is not a match however they have 60 matches. We go to a new dr the end of this month to talk about treatment.How do I deal with my son going from a childrens hospaital to an adult hospital? How do I give him the suport he needs as an adult and still give him the love he needs as a child? 20 is so young. The treatment is in another city 8 hours from home. I will have to put my job on hold and that is hard becasue I am a single mom with no help. My youngest is in High school and my son get a little money from the state. How am I going to live for the months Treatment will take with no money coming in? Any one with words of wisdom for me I can use some.

Thanks from Jon's Mom Ilene

mdnikki
Posts: 34
Joined: Apr 2010

I may not be of much help but I wonder if you contacted the ACA to see if they have anyone that can help you. I am new to this journey as well. Is there a social worker that can help you perhaps find a place to stay for free or something close to where he will get treatment. I just imagine the Ronald McDonald house type of thing must exist for parents of adult children.

How about disability or SSI for your son is he eligible for that as well?

I know you must feel so alone. I am trying to care for my mother who is recently diagnosed and I am raising my adult son who has special needs so I feel the pull as well..a lil different than yours but I know its difficult.

I hope someone here will be able to give you more advice, I just wanted to send you some support.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Ilene,
Welcome to our caregivers world! My gosh! You sure do have a full plate. My heart goes out to you and your sons. There has got to be help out there for you. Ask if the cancer center you are going to if they have hospice housing. I am sure they do. How about a local church?
The american cancer society will help too. All you have to do is ask. Any close friends or neighbors? Hang in there, and put this in God's hands. Remember the scripture.....Come to me all of those that are heavy laden, and I will refresh you. I will be praying for all of you. Keep us updated.
Tina

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