Wednesday, May 25, 2011

About the list, and luck

How lucky I am, to be sitting up with The Boy, an hour later than he really should be up, waiting for him to go to sleep, because sometimes he still has trouble. How lucky that I get to offer him new decals for his hearing aids. Or remind him that he needs his medicine.

Another precious warrior got her angel wings today. A heart-wrenching description, as a family friend wrote about how Riley reached for her mother's arms and, then, was taken into His. She had been fighting and fighting, having completed at least four different types of treatment for Wilms Tumor, and it just didn't happen.

Riley's story was one I followed closely, as she had been on the regimen on which The Boy had been. She completed the entire 30 cycles. She still did well in school and was accepted into the gifted program. She also ended up with hearing aids.

Riley was wise beyond her years and was consistently true to her faith. She gave her parents hope when they struggled and, reading her story, she seemed almost fearless. That's easy to say about my kid, who didn't really understand what was happening to him, but Riley was six when she began her battle and ten when she lost it. She knew what was happening to her and still remained so strong.

About five hours later, Riley's maternal grandfather passed away as well. If heaven is there as it is described, then they travel together. But they leave behind Riley's parents and three younger siblings, whom I hope have been given some of Riley's strength.

Another child in our Wilms community is also in that "make him comfortable" stage. After 3 magical days on his Make-A-Wish trip, he became very ill and had to return to his hospital.

I know of these families through an email group. Everyone has a child who is either on treatment for Wilms Tumor, is off treatment, or is an angel. There are also a few adult survivors. The list changes. Some who are no longer fighting don't really keep up with the list because it's too hard. Some who are off treatment prefer to keep their distance, while some come back to congratulate on clear test results and help support those who get bad news. Frequent topics include educational and social issues as they relate to the post-treatment child. And, of course, there are the new members. And we always say, glad you're here because we are glad to help you, but sorry you have to be.

I really hope that the reason for the list growing is that more families are being made aware of it, but I'm just not feeling that optimistic.

Why do I stay on the list? I know that my heart is just going to break over and over again for these children and families who were on the wrong side of the statistics. And I'll just be reminded of how we aren't our of the woods yet with The Boy. However, it is important to share these stories and to pull together with people who REALLY understand, whether we are searching for satisfaction with a medical decision, dealing with emotional fallout from our sick/formerly sick children and their siblings, or trying to figure out the best way to get special service for our children because we might not know what the toxic chemicals have done to them.

If you pray, pray for these families. Also, a Jewish mother of young children in NYC is fighting cancer. Her name is Chaya Meira (will get her mother's name soon). The "Chaya" was added to her name, as it means "life." Anyhow, the family is asking for people to do Chesed, acts of lovingkindness, in her name. It's a Jewish custom to do something like that; have in mind the name of a person who needs healing as you do something good and righteous. Every little bit helps, right?

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