looking for imput or advice – child with possible low grade MDS

[Liza Blankenship]

I am hoping someone can answer some questions. I am going to jump right into our story. And I will thank you for any imput anyone can give me.

11/2013 my,at the time,14 year old son advised me that he had a lump in his groin. I assumed it was a hernia. Took him to his pediatrician and she confirmed with and ultrasound this was a enlarged lymph node. She ordered a CBC and that showed the his WBC and RBC was mildly low. Lymph nodes resolved and we were referred to a pediatric hematologist for low blood counts. The hematologist repeated his CBC several times with no improvement with his counts. BMB in 1/2015 showed 30%-35% cellularity with no other abnormalities. As of today he has had 5 BMB and his blood counts remain mildly low. We have no diagnois other than possible MDS that hasn’t came to surface. He has had genetic testing for MDS with normal results. His blasts are normal. His iron level is low.

My question or I guess I am looking good for anyone that may have had symptoms like this before diagnosis of MDS. I have taken him for a 2nd opinion and the hematologist said the same thing. He most likely has a low grade MDS brewing.

Any input would be greatly appreciated!!

I would like to add he has a father that had leukemia and a brother with non-hodgkins lymphoma. Also he has been placed on the BMT registry with a match.

[Jill]

No advise, but I’m so sorry you have to go through this again!

[staci hamilton]

Hi Liza, First of all, I am sorry you, your son and your family are going through this. I am not sure where you live but if you can make it to Boston, I would HIGHLY recommend consulting with Dr. Inga Hoffman at Dana-Farber/Children’s Hospital of Boston. My son is 11 and was diagnosed with ITP (low platelets) in January 2015. His father had MDS and after a bone marrow transplant, it developed into full blown leukemia and he passed away. Our always healthy son developed this random platelet issue and I have always felt that there had to be some type correlation to his Dad’s MDS. I was told time and time again, that MDS is NOT inherited and that this is just ITP. He went through a round of chemo treatments last summer, which worked for some time but did not “cure” him. I stumbled across this website http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Myelodysplastic-Syndrome.aspx and sent an email-Dr. Hoffman responded the same day! We went to Boston last week and I could not have been more pleased and felt more at ease after meeting with Dr. Hoffman and her team. They did a BMB and ran numerous other tests. They also do pediatric MDS research there so they are extremely knowledgeable and experienced in what should be tested and looked for. My son had a BMB last year and the genetic testing they did, came back normal. Dr. Hoffman’s group seems to dig a lot deeper in the tests and genetic testing’s than our original oncologist/hematologist did. I am sure you are worried that his father’s leukemia is somehow linked to your son’s symptoms- I know I am. Good luck and I hope this helped!!

[Amanda]

Hi there,

I had a similar story. I was diagnosed at the age of 14/15 after persistent and frequent skin infections. I am 28 now. If you are in the NY area and your son is still in the pediatric age range go to MSKCC and see Dr. steinhertz or his team. Dr. Steinhertz is close to retiring and is only in the office a few days a week but he is one of the foremost experts in pediatric MDS. If your son is of adult age go see Dr. Gail Roboz across the street at Weil Cornell. She is phenomenal! I am also happy to talk offline as I am sure this is an upsetting and confusing time for your family.

[Author]

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