My 5 year old has MDS

[Ross Jones]

My son was diagnosed with MDS monosomy 7 about 2 months ago. He will start his transplant next week. I would appreciate any comments from other parents with similar age children that have gone through this process.

[mdsfound]

Dear Ross, A mom of an MDS patient started a pediatric MDS Facebook support community. Here is the link https://www.facebook.com/Familiesofpediatricmds/. I can also connect you to the wonderful women who is trying to make a difference in the world of pediatric MDS. Please message me at patientliaison@mds-foundation.org and I will e-introduce you to each other. I hope this helps.

[Rebekah Garrett]

Hi Ross,
My daughter was diagnosed at 10 years of age with mds/aml monosomy 7. She had two rounds of chemo therapy followed by a bone marrow transplant. She is coming up to five years remission in July this year. She is celebrating her 15th birthday tomorrow.

I hope your son is doing ok.

[Ross Jones]

Update:

My son completed his bone marrow transplant. The process went as well as could have been expected. He tolerated the chemotherapy very well and never got sick or needed intravenous nourishment. The hardest part was trying to keep a 5 year-old busy and not thinking about be in the hospital for 2 months. After he was discharged we stayed at the Ronald McDonald house a few blocks away and came in for blood work every other day for 2 weeks. Then it was time to go home. He then had visits twice a week and a weekly home visit to change his central line dressing. He is now around 125 days post transplant and has had no real issues. We did have a 2 night hospital stay for precaution from a overdose ( my fault) of his Cyclosporine. Because he is still on immunosuppression, our son is restricted from our cats, on a special diet and limited on leaving our home. His follow up bone marrow biopsies are good and he will probably have all of his restrictions lifted in around 3 more months. He still has weekly visits to run labs and check for any GVHD. He still has a long road ahead but we are thankful that his early detection seems to have made a huge difference. We hope to meet the donor that gave my son this special gift. Thanks for the encouraging news about your daughter.

[Donna]

Your story about your son is so touching. I am glad to hear that he is doing well. It has to be difficult to keep a 5 year old boy down with restrictions. Thank you for sharing your son’s story with us.
Donna

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