Fifty Schmifty

It's Thursday night. (Thanks, Aunt Clara.) Was it really only a week ago our world fell apart for the second time? So much to update you on, but my computer (with all of my photos on in) is at the hospital with Jay, so your update will come without photographic accompaniment.

Feel free to stop reading now and storm off in a huff.

Although it took a full week, we finally received the results of the bone marrow biopsy. Lois has indeed relapsed with MDS and curiously has the same number of blast cells in her bone marrow that she did back in January. The chromosomal abnormality in her marrow (4 copies of #21 and 4 copies of #8) is exactly the same as it was in January, too. Wish we could have found this out a bit sooner and saved our girl from several rounds of high dose chemo that obviously didn't do her bone marrow nor her hair any good.

The pathologist who studied her marrow told Dr. M it just "didn't make sense." I'm not sure what to make of that comment? I guess we can just add it to the list of rules my daughter refuses to follow. Even her bone marrow insists on being unconventional. In fact, the most startling revelation to come from all of this bone marrow testing is that Lois has mosaicism.

All of my readers who are part of the DS community just made some kind of loud exclamation.

Weird, right?

If you don't have a child with DS, you might want to google "mosaic down syndrome" and do a little reading. We'll wait here for you.

Apparently only 90% of Lois's cells have the extra copy of 21. Don't most mosaic's have a larger percentage of cells WITHOUT the extra copy? I believe we now have scientific proof that my child is completely unique - even on the cellular level.

Unique. Unconventional. She's one in a million. But in the world of pediatric cancer, it's not always a good thing to be so unique.

Dr. M has had no success at finding a documented case of MDS relapsing with MDS. Nor had any of the physicians at the Children's Oncology Group meeting in Texas had any experience with such a situation. Their recommendations were for high dose chemotherapy to achieve a remission, and a bone marrow transplant to correct what is inherently wrong with Lois's stem cells. And so that's the plan Dr. M has laid out for us.

We started 5 days of chemo on Wednesday morning. Lois is receiving 2 hours of a nasty, vile, heavy hitting drug that none of our nurses had ever heard of nor administered before -followed by a 2 hour break and then 2 hours of Ara-C, the same drug she had in all 6 of her previous treatments. We will do that 5 times, 24 hours apart and then be released from the hospital. Two big hurdles will follow:

#1 - Stay fever/infection free. Dr. M. has already told me to expect Lois will land back in the hospital with a fever. This is a heavy dose of chemo that will knock out her marrow and make it very slow to recover. That means an extended period of time without white blood cells. And that's dangerous. A fever at the beginning of the recovery process is especially dangerous as it will be weeks before her body is able to produce infection fighting cells. Things could go horribly wrong during that time. They offered us the option to have Lois remain in the hospital until her counts begin to recover. But my fear is that she's more likely to pick up something in the hospital (and have that something be a BAD something like MRSA, or RSV) than she is at home.

#2 - When she begins to recover they will repeat the bone marrow aspiration. Our hope is that Lois gets back into remission with one treatment. Although if that happens, Dr. M still wants to repeat the infusion she's receiving now one more time before we go ahead with a bone marrow transplant. But if Lois does NOT manage to get back to remission after this treatment, I'm not sure what that will mean for her future. Harder hitting drugs. Longer periods of neutropenia. It makes me sick to my stomach to think about.

I've educated myself quite a bit on bone marrow transplants in the past week and I've learned a lot of interesting things which I will share with you in the coming weeks. After my research, and talks with Dr. M I am LESS fearful of the process and MORE hopeful that Lois can, and will, survive. Mac's cheeks have been swabbed, as have Lois's and we are anxiously awaiting the results of that testing. Mac does not have to be a perfect match for Lois in order for her to receive his cord blood. But obviously, a perfect match is optimal. It's what we want and what we think we deserve. Don't you think we deserve a little bit of "good" luck? That maybe the odds could fall in our favor just this once?

And so we arrive at the title of my blog entry for tonight. Fifty, schmifty. If there isn't a documented case of a child with MDS relapsing with MDS, then how does anyone know her chances of surviving it? I pressed Dr. M. to give me numbers because I felt I needed them, but now I'm not so sure.

Yes, I understand there is a chance my daughter may not survive this medical crisis. I spent 24 hours crying about that. Planning her funeral. Being bitter and angry. But I contend that it isn't possible to live a productive life in that emotional state. I had to come to terms with the 50% chance that Lois doesn't survive. But I can't live with that 50% every day. That seems like it would be hard to do, right? But it isn't when you live with Lois. Lois, who is so full of life and happiness. Who amuses me and amazes me at every turn. Who just received a devastating medical diagnosis and is seemingly thumbing her nose at it.

Instead, Jay and I choose to live with the 50% chance that Lois will come through this dark trial on the other side, grinning from ear to ear and wondering what all the fuss was about. I believe to my very core that she is capable of winning this war. Don't you?

Then it is time to dry your tears, my friends. We have to acknowledge that horrible 50% chance that cancer will take Lois from us, but we do not have to live in it. Instead, we will live in hope, in wonder, and in amazement at Lois's courage and determination to live.

It's a MUCH happier place to be. Believe me.