My baby has MDS

[nursemack]

My 15 month old was diagnosed with monosomy 7 MDS last week. As an RN, I have a small advantage of medical knowledge compared to some people. I was wondering though, does anyone know anyone else with a young child with MDS? I would love to chat with them. We are waiting to find a marrow donor. Our doc told us it is her only option. Any advice??

[Bkwits]

Welcome to the forum, but I am so sorry that your little daughter has this terrible disease. I haven’t heard of anyone this young having it, but there have been parents of a few children on this forum. One of the great sucess stories is Billy, who was 12, I think. His dad posts from time to time to let us know how he is doing. I believe he is in high school now and doing quite well. This forum is a fountain of knowledge. Some have lived with the disease for many years. God bless you and Rachel.
Barb

[choijk]

Nurse Mack,
I’m so sorry to hear about Rachel’s recent diagnosis. As Barb mentioned, one of the great success stories is Billy. I hope Billy’s dad will not mind, but you can read up on Billy’s story or perhaps email Billy’s dad here:
http://www.wcgowacki.com/BILLY.html
I’ve actually read throughout all the posts and it is a wonderful site that is tributed to Billy and their journey with MDS and bone marrow transplant. I hope you can find the answers that you are looking for.

[Jimbob]

Nurse Mack,
I have followed Billy’s journal for almost 4 years. His father Bill provides great links on almost anything that you might question and has been very willing to answer questions. He also has links and contacts with many parents of child with various forms of blood diseases and cancer. June provided a great resource.
btw, when I first started my research on CMML, I kept getting refered to JMML (Juvenile Myelomonocytic Leukemia). Whatever it is, as Bill is likely to tell you, results are much more positive now than they were just a few years ago.
God Bless,
Jim

[nursemack]

Thanks for your responses….I know that there are fewer than 100 cases diagnosed in the pediatric population a year, and unfortunately we got the unlucky straw. We tried to get into St. Jude with no luck…so we will go to Fred Hutchinson in Seattle, since it is closest and my husband has family there. Has anyone been there? I saw that a couple of you are going to the Vegas conference…My father is going to go in my place since I don’t know if we’ll be in transplant mode or what will be going on, so hopefully he’ll be able to meet with some of you. I’m really glad that I found this forum, even though everyone else seems to be older than 15 months Reading what you all write does make me feel better and more support is always a good thing. Thank you. I’m getting a copy of Delaney’s cytogenetic and pathology report this evening and will post her results for anyone that’s curious…

[Terri]

My prayers are with you, I can not even think how hard it is for a 15 month old and for you as a Mother. As the others suggested Billy’s page is a good start, Billy has come through wonderfully and his father I am sure can answer a lot of questions if you have them.
I will continue praying that you find that bmt match quickly. Does she have any siblings/
God Bless you and your family.

[bluej]

Rachel,
I am so touched by your story.I hope little DeLaney will be O.K. I was feeling a little sorry for myself today, not anymore. God Bless You and keep you both safe.

Erma
Kentucky, Diag. MDS 2/07, Age 55.

[Neil]

Hi Rachel,
When you got the BMB results did it mention if she has hypocellular or hypercellular marrow?
Any mention of abnormal chromosomes?

[nursemack]

Neil,
SHe has hypocellular marrow and monosomy 7. Not a good combo.

[Neil]

Hi Rachael,
Did the docs rule out Aplastic Anemia?
The hypocellular marrow is one of the differences between AA and MDS. A few MDS patients have hypocellular marrow—but.
AA is a bit easier to treat than MDS and is more frequently found in young patients.
There are some AA treatments that work on some MDS patients with hypocellular marrow.

[riley]

Hi Rachel,

I think the link below will take you to a post from a mother of a 5-year-old boy with MDS. If it doesn’t work, you can search on this site for “child with MDS” and it will bring up her post from 12-12-06. She was looking to connect with other parents whose children have MDS. My prayers are with you and Delaney.

Nicole

https://www.mds-foundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004532#000000

[nursemack]

Neil,
They did rule out AA. Apparently the monsomy 7 wouldn’t be present with AA from what I understand. I’ve been in contact with not only doctors here in WA, but also in TX, and Michigan. Trying to get as much info as I can to help my daughter and make sure the diagnosis is the correct one. Also, thanks Nicole, for trying to find other families with MDS children. It is much appreciated!!

[Billy’s Dad]

Hello Rachel,
I hope this entry finds you well. As you’ve probably learned by now, no 2 case’s are alike, and you and your precious Delaney are in My Prayer’s. My Son’s MDS was secondary due to his bone cancer treatment (Chemo VP-16), and from our experience it is becoming a more frequent occurance in children fighting cancer. There have been very little advance’s made in the treatment of childhood cancer over the past 20+ years, and the children continue to suffer because of it. You need to take all you hear with a ‘grain of salt’, and trust that a GREAT donor match will be found. Trust in what your Dr’s have to offer, as MDS in a 15 mo old child is almost unheard of. Believe that your precious child will overcome this disease, and be strong for her. Please feel free to contact me (us) for any reason. You can find our info on Billy’s Info Page ( HERE ).
Be Well,

Billy’s Dad {Bill}

[shirlsgirl]

Hi Rachel,

How’s Delaney doing? Sending positive thoughts to you and your little girl.

Take care,

Jody

[willie]

Rachel All of the people at the SCCA will treat you and your family well. Willie

[Author]

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