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Old Fri Apr 6, 2007, 02:25 PM
cola1988 cola1988 is offline
Join Date: Feb 2007
Location: St. Ignace, MI
Posts: 5
Cool Alicia's ITP/AA/MDS/Transplant 1/13/07

Just found this website, finally a place to talk to others with the same experiences. These diagnosis are difficult because they don't really fit into the category of cancer but what else could they be classified as? Anyway, my daughter Alicia was 6 last year in April when we noticed bruises that were very black and lasted forever. So we started our journey on April 21, 2006 with a platelet count of 36,000 and a 11pm trip to the closed hospital with a pediatric hemetologist, which is Grand Rapids, MI, about a 4 hour drive. She was diagnosed with ITP with no known cause. We were hoping it was just a virus and they monitered her blood counts for some time. Her second BMB in July showed that her red blood cells and the white were also affected and her diagnosis was changed to AA. She had a platelet transfusion in July that didn't last for 24 hours so we decided not to do another one unless absolutely necessary. She spent from July until December with less than 8,000 platelets, most days were 3,000. Her BMB in November showed her cellularity had increased from 40% to 90% and now the dr's were confused. Her diagnosis at this time was borderline AA or MDS. We had all been tested in August for marrow matches and thank God and all his wonderfullness that her brother was an exact 10/10 match. The transplant was really the only option by this time and they were worried about waiting and her progressing to AML. The dr's thought it best she get to spend the holidays at home so on Dec 27th she underwent surgery to get her broviac line placed and we came home for New Year's Day. On Jan 2nd, she began her 8 days of chemo, instead of the 4 to treat AA patients, just in case it was MDS, they wanted to make sure to kill all her cells off. Her transplant was 1/13/07 and it went great. She didn't get any serious side effects, just some nausea, vomiting and the mouth sores. DeVos Children's Hospital is wonderful, they gave her IV nutrition and she was on a morphine drip for the pain in her mouth and throat. She made it through with flying colors. Her white blood cells grafted on day +16 and we were out by day +18. We couldn't come home, as that's 4 hrs away, but we stayed at the Renucci house at the hospital in our own apartment. Her red blood cells and platelets grafted before day +30 and have remained in the normal ranges since. Her BMB on day +30 was 100% donor cells which is great. We came home on March 3rd and she's done great since. She had an outside birthday party on March 17th with her friends. We go to DeVos every other week for her IVIG treatments. She had her first fever of 100.4 on 4/3/07 when we were at the hospital, they gave her IV antibiotics and 4 days worth of antibiotics to take at home. The fever was gone the next morning and has stayed away. She has a carepage that I update frequently at www.carepages.com, and her carepage name is AliciaGaren. I want to hear from others with similar stories, so we can have someone else to talk to. Thank you and God Bless, Nicole
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Old Fri Apr 13, 2007, 06:11 PM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612
Hi, Nicole.

Welcome to Marrowforums. Congratulations on your daughter's successful transplant and quick return to some normal activities--even a birthday party! When I had my transplant in 1998, I wasn't allowed near anyone, especially children who are often the carriers of colds and other nasty germs, for the first 100 days. Quarantine was the word of the day for me.

Your harrowing experience with Alicia's rapidly deteriorating bone marrow is a familiar one around here. You said:
These diagnosis are difficult because they don't really fit into the category of cancer but what else could they be classified as?
We call them "bone marrow failure diseases". They are not really cancers because the there is no unchecked growth of cells, but it's true that MDS can progress to acute leukemia, so the boundaries between the diseases are not always well-defined. What AA, MDS, and even ITP, have in common is that they result from the failure of the bone marrow to produce enough blood cells or blood cells that function properly.

How is Alicia's doing now on this 3-month anniversary of her transplant?

Ruth Cuadra
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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