[mdsmom]

You know, I’m no doctor. I’m ready to accept that these histories change nothing as far as our current situation goes. My great-grandmother came from Germany in the latter half of the 1800’s, found her picture and she had one eye that is completely white, maybe glaucoma; maybe not. Her daughter (my mothers mother) had the most horrible case of crippling arthritis (autoimmune), completely useless hands and could barely walk. I remember as a child my mother taking her to get shots of gold in her knees, she wore special open shoes cause her knarled bones could not fit in normal shoes. It started when she was 26. Her husband (my mothers Dad) died suddenly after minor surgery-possibly hemophilia ( isn’t that autoimmune)? He was 38. My mother was treated for over 20 years for cold agglutinin disease (very rare,guess what? AUTOIMMUNE) blood RH neg. There is 14 years separating my sister and me, she lost 5 babies between us. I was early, teeny, and transfused at birth. I have had 3 surgeries in the last two years for spontaneously detached retinas. Remember my great-grandmother? She was 23 when she had her 1st child.
Keelyn has always been anemic and never had a normal PAP (the doctors always just told her to take iron pills). She had Aubry at 22, nine days before his 1st birthday-because her oncologist/hemotologist in Austin was hesitant to diagnose her-we went to MD Anderson and they came up with MDS/RAEB. Weird, weird, weird-just my opinion. Do you think any of the doctors want to hear my story? NO
Her MD Anderson doctor told me “it’s very sad”

[mdsmom]

Kristy, I went on the website, what a beautiful child! Tell me more about cord transplants. I have traveled through many forums, and I believe Mia is the youngest victim of MDS I’ve come across. It is still MDS, right? Keelyn was told during her chemo that she would never be able to have more children, she took 3 birth control pills each day. While she was healthy, her cycle came back like clockwork. I asked her today if she wanted to look into having eggs harvested. She’s such a smart aleck-took one look at Aubry with his underwear on his head, two unmatched shoes singing Barney songs at the top of his lungs- and asked me if I’d lost my mind! Mia looks so happy and healthy, I’m sure she will be just fine. We’ll help each other through this. Just curious, is there any autoimmune blood or bone marrow failure syndromes in your family? 3 of the last 4 generations of women on my side had blood disorders. I found out recently I was transfused at birth. Since it is so unusual for young people to get MDS, and all the statistics say even more common in men (although I don’t know that I believe this) I was just wondering. I’ve always thought something else was going on in Keelyn’s case/. Hang in there, all the caring folks we’ve met on this site will help us through.

[mdsmom]

Her bone marrow biopsy last week showed 34% blast. Has your disease progressed into leukemia? I wish waiting would make it at the very least, tolerable.

[mdsmom]

Hi Kristy,
When we started this journey last year there were no young women to be found in cyberspace. I’m grateful we found each other. We’re getting our plan in place to deal with Keelyn’s little 2 yr old son since Mommy is going away for awhile. My heart is bleeding…….

[mdsmom]

You are right- there aren’t many options. Silly me, I let my guard down. When the words came out of the doctors mouth, I know my heart stopped. I’m adjusting, gearing back up to do battle. Of course, the donors have not been contacted, we’ve got lots of questions. Last year I met many great folks at the hospital and found 1 patient that lived after the transplant. He had signifigant GVHD issues but survived. The reality is a nightmare, and changes the situation completely. Her age is definitely to her advantage, and a 50/50 chance could be worse I guess. I just wish it was me instead. We’ll see what happens. BUT IT STLL SUCKS

[mdsmom]

Hi friends,
Just got back from MD Anderson, my daughter has AML. Her blast in the marrow biopsy was 34%. What are the alternatives to a transplant. We’re mighty scared!

[mdsmom]

Our search for a donor was done at MD Anderson. My daughters insurance pays only after a donor is located. I asked Anderson to provide the search at no cost to us, they paused briefly and said yes. Our cost would have been $7500 and we just didn’t have it. The search took about 1 yr and recently produced two 6/6 perfect donors. We plan to use them only as a last resort. We are very happy to welcome them to our cure!

[mdsmom]

Helen,
I am the mother of a young adult with MDS-RAEB, and I know that everyday we awake to struggle again is a good day. I am so sorry, it’s just not fair.
I read that the NDA was accepted at FDA last week with fast-track designation, and I believe Dr. ESTEY at MD Anderson is the principal investigator on at least 3 new phase 2 and/or 3 protocols that may have already begun. In information on the Celgene website, my thought was the phase 1 studies may have been done at a CRO on young healthies. The results of their studies on patients affected with MDS are INCREDIBLE. If in fact, 1/2 of the MDS population have the chromosome mutations, 1/2 of us have not just a new ray of hope but a meteor size blast of CURE! Non-invasive, no transfusions, normal human HAPPINESS. What I find amazing is that it was all such a surprise. Stumbling around the pharmaceuticals and landed on paradise. We should all be so blessed.

[mdsmom]

Our daughter suffered with mouthsores with every chemo session and it would last about 2 weeks. She was completely raw, couldn’t eat or drink, some days I would use the pain meds to keep her asleep. The mouth swishing stuff didn’t do alot, you want to make sure nothing has alcohol in it. The 3rd time her oncologist gave her one of the quinolone antibiotics-Cipro I think, (in addition to the other 3 she took daily). No kidding, her mouth felt better within 36 hours. The Vicodin never helped much for pain, but with the antibiotics she got oxycodone. The combination worked like magic.

[mdsmom]

The blood counts are up!!!!!!! And all by themselves. Not alot,(platelets still less than half normal, wbc over 3) but WBC and platelets UP!!!! I think I’ll sleep tonight. Another draw on Thurs. Hoping for UP,UP,UP
In reading some of your profiles, I notice that one of the common threads is maintenance drugs. Keelyn has taken nothing except iron tablets since last year. Is this unusual? Maybe because she’s so young?

You all made us feel better. Frank, have you ever checked out LifeMosaic.com? We have felt so all alone through this wondering why Keelyn is ill with a disease that young people just don’t have. I stumbled on that website last night and read about several young women. Another great site is PlanetCancer.com.
I will pray for all of you. Everyday we wake up to struggle again is a good day.

[mdsmom]

All of you are wonderful and kind. Isn’t it amazing how we have to adjust to not being in control. Keelyn was treated initially at MD Anderson and this morning I have emailed her oncologist here in Austin at the Southwest Regional Cancer Center and her doctor at Anderson. And guess what? MD Anderson answered within 60 minutes! She has received such heartfelt care I believe because her doctors look at her and see their own child. We have been so blessed with caring and concerned clinicians and friends. We’ll forge ahead and save her again.

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