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Dave, best of wishes for great success with your BMT. Looking forward to good news from you.

Greg

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Kathryn, I’m so sorry to hear of your loss. You and your family are in our thoughts.

Greg

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Marsha, don’t think twice about the comments. Anyone who thinks there won’t be bumps, sometimes serious ones, with even a hugely successful SCT, doesn’t understand the procedure and risks involved.

Every situation is different. My Mom’s counts, because of the secondary MDS status, were going down about 15-20% every month and her blasts were rising a few percent every BMB — if she wanted any extended life, or a chance at it, she unfortunately had to choose the SCT. We’ve never had one second thought about it — I’m convinced that her life would have been even shorter without the SCT, with no hope of long-term survival.

I root equally for all with this disease, regardless of the path they choose. I think it is faulty logic to assume that everyone should undertake a similar method of dealing with it. Frankly, I just don’t believe any natural or unnatural methods would have taken Mom off the path she was careening down.

The brutal truth of the matter is that a transplant IS the only known cure for MDS (though I hope not for long), and for someone who is younger and/or someone who has no other options, it is something that must be strongly considered. For those who don’t fit in this category, it is not necessarily a choice to make. I guarantee that if Mom could have had even two good years of prognosis (with her age and situation), she probably wouldn’t have done the SCT. The fact is, she was heading downhill fast, and her choice was to have some hope of beating it.

Hang in there, Marsha; the big picture looks great, and the bumps, as you know, are standard practice. Please do keep in touch as to how you’re doing.

Greg

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Marsha,

Wishing you the best in knocking all of these obstacles down. It sounds like you’re winning!

Greg

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Terri, that is excellent news!

Greg

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Carrie, best of wishes for your Dad’s recovery. I hope the worst part of this is behind him.

Take care,

Greg

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Frank, best of wishes on a quick recovery from the infection — hopefully the worst is behind you.

Greg

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Carrie, hope everything clears up and he feels better soon.

Greg

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Andrzej,

Yes, your Dad is courageous to take this head on. It does provide hope, which is a good thing.

I’ll be thinking of you guys and wishing for the best. Please do keep in touch as to how he’s doing.

Greg

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Thank you all so very, very much. All of your words do mean a lot to me at this time.

Dad had my wife and I come in early this morning, and I’m glad he did. We got to exchange some final words with Mom before they increased the morphine to keep her comfortable. She’s now in a deep, comfortable sleep, but unable to communicate, which is fine, as long as she’s not in pain.

I know all of you have your own hardships, and I appreciate you taking the time to make me feel better about mine. Thankfully, I have absolutely no regrets, really, about my Mom, whether it be personal ones, or the battle that she waged so valiantly and courageously against MDS. I was lucky to have her in my life well into my adulthood, and saw her or spoke to her probably every week of my life. The void she will leave as a mother and grandmother will be enormous, but I hope our memories of her are able to mostly fill the gap.

Now my energies are going to focus on an equally remarkable person, my Dad, who one long-time nurse at the hospital said was the finest caregiver she had ever seen. I know he is in great pain, as he fought just as hard as Mom, and I know it is difficult for him to call off the battle. As with my Mom, I am exceedingly lucky to have him as a parent, and I cherish the days I have had and will continue to have with him. He is my best friend and will continue to provide inspiration to me, just as Mom did, especially so in the last nine months.

I am also lucky to have my wife and son, who will also both exceedingly miss Mom, but have provided and will continue to provide me with countless amounts of support throughout this difficult time.

Thanks again, and very best of wishes to all of you and your loved ones. I’ll be looking for good news from all of you.

Greg

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Hi Kristy,

Yes, Mom is 65 and had a SCT in November. Hers was called a “midi” in that it was power-wise in-between a mini and a full one. In her most recent BMB, she had 100% donor cells and no evidence of any leukemic or MDS activity.

That’s the good part. She has been recently beset with lots of problems, including graft-vs-host in the mouth, gut and liver, and had a recurrence of breast cancer that resulted in a mastectomy. All of this has taken a toll on her, and combined with her Parkinson’s, right now, she’s bed- and wheelchair-bound due to a lot of weakness.

The clinic she went to was St. Luke’s in Kansas City. It has been a tremendous place for her — the doctors as well as nurses have been phenomenal. When Mom was first diagnosed, she did go to Barnes in St. Louis for a second opinion and thought they were very knowledgeable as well. St. Luke’s was one of the few in the country performing the midi so we were lucky with that.

If you have any further questions, don’t hesitate to ask.

Best of wishes,

Greg

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Jody, that’s great to hear. Hope things just keep rolling forward.

Take care,

Greg

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Very good news, Naomi! Enjoy yourself,

Greg

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Lola, that is great news! I’m confident you will do fine. Please keep us posted when you can. We’ll all be rooting for you.

Greg

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Andrzej, I’m glad that the SCT is still in the picture. Continued best of wishes for your Dad.

Greg

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