Thursday, October 03, 2013
Last Saturday we participated in the CureSearch Walk. It was a beautiful, perfect day, and the purple-shirted Team Rebecca people were out in force. We made up about a third of all the walkers. And we raised about a third of all the money. Our group got a plaque for raising the most money.
In a way, this made me sad. Pedal to the Point, which benefits MS, had over a thousand riders. This benefit for children's cancer research had only about 150 walkers. There simply isn't enough awareness of the fact that so many children die from cancer. The statistics talk about a high cure rate for kids, but that is just kids with leukemia. For other children's cancers, the survivor rate is generally no better, and sometimes worse, that that of adults. Only 4% of the money spent on cancer research goes to pediatric research, and with the government shutdown several research studies that could be saving lives are simply being shuttered. It makes me want to cry.
This is probably my favorite picture of Rebecca, being chased by my husband, who, lacking a purple shirt, had instead dug a purple cape up. Becca remains so very alive and vibrant that it's almost impossible to believe her life is at risk. But at this moment she is undergoing her 16th radiation treatment, out of the 31 that are scheduled before she begins the year of her two-drug chemotherapy regimen. And it's still only a 50% chance that this smiling, high-energy little girl will be with us in 5 years.
Friday, September 20, 2013
Mom is out of immediate danger. Thank you all for your prayers and thoughts. I am so very grateful for them.
It turns out that she isn't actually bleeding internally. We burn through red blood cells on a regular basis; we dispel them through sweat and urine and such, and our kidneys tell our body to make more red blood cells accordingly.
Mom's kidneys are now so weak and subfunctional that they no longer signal the body to make red blood cells. She has to start kidney dialysis, but she wanted to go on one last vacation before she started. She went to her doctor last week, who told her that she needed to get a iron pack and a blood transfusion. But since she has had so many transfusion over the last couple of years it makes her blood very difficult to match due to antigens, so she didn't want to wait for the blood to be ordered, which would have disrupted her vacation schedule, and decided to wait until she returned from vacation and at that point her blood numbers weren't that bad.
Well go figure, the morning they were to leave it all went south. She was lucky to have made it to the hospital in time because she was in heart failure due to the fact that her blood level was so low. The doctor said if her body wasn't used to running on low she never would of made it. Then the big problem came--the only blood to match was in Salt Lake. It was basically over (do not resuscitate papers and all Ugh) And then we got our miracle: someone in the hospital had blood that was close to hers and didn't need all the blood that they had ordered from Salt lake. It was a bit risky but her only chance and thank God it worked.
She burned through that blood really fast because it wasn't a perfect match, but close enough to hold her until 4 in the morning when the good stuff got there. Now her numbers are up and with dialysis and the occasional transfusion we get to keep her with us for a little longer. Thankfully she is so determined to be here she just keeps fighting.
Thursday, September 19, 2013
Now? My mother is in the hospital. Yesterday they didn't think she was going to live. Normal red blood cell levels are a 9-10. People die when they drop to 6. Mom's were 5.7. Because of her previous health problems and the number of blood transfusions that she has had means that she has antigen reactions to most blood, so they have to have very specific mixture of blood.
Which they did not have at the hospital. My sister, who lives in Montana, too, was called to race to the hospital to be able to say goodbye. Miraculously, they found some blood that had been sent to the hospital for another patient's surgery who hadn't used it. It wasn't a perfect match, but it was all they had left to try. When they gave her the blood, they had her sign a release saying that she understood that the blood could stop her heart.
Fortunately, it did not. But her body can't use the blood efficiently, so they keep having to give her more. The doctor says her heart and kidneys are so weak that they don't signal her body to make more blood cells so she just plain runs out of blood. I understand that her doctor told her last week that she needed a transfusion and an iron pack, but she was leaving on vacation and didn't want to delay it while waiting for the blood to arrive. She thought she could make it. Instead, she ended up in the hospital on the morning she was supposed to leave.
She is now not in immediate danger, but every blood transfusion damages her heart and kidneys even more, and she now has to go on dialysis. Basically, this is going to kill her in a matter of time. But not today.
I am kind of completely done with this year, and with hospitals.
Thursday, September 12, 2013
Becca and her parents have returned to CHOP. She is going through her first radiation treatment right now.
This morning, her parents had to put a pill in her mouth that is, essentially, poison. Chemotherapy is a carefully concocted potion of chemicals that, incorrectly dosed, could kill her. And they don't know for certain that this is the correct medicine.
Those of us, their friends and family, can only pray and offer our love and support. One of the ways that we are showing that support is to participate in the CureSearch Walk, a fundraiser for children's cancer research, on September 28. So far we have raised over $5000, and have 24 walkers signed up.
If you live in the Cleveland area, then consider walking. It would be wonderful to meet some of my local Sparkers. If not, and if you'd like to do something, consider making a donation to Team Becca.
(Be patient if the page takes a long time to load; it's just like that.)
Wednesday, September 04, 2013
Tomorrow and Thursday evenings I will be with our friends, as they try to make something approximating the Jewish high holidays.
At these events, I will do my damnedest to keep my self together.
I am seething with rage and impotence. How bad is this? Imagine your worst nightmare. Your worst loss. The worst ache of your heart.
You are still in the junior league.
But don't feel bad about me. I'm just the beloved auntie. My presence provides assistance to the parents, gives that amazing, stubborn, willful beast of a child just one more target for her defiance.
And I'm good being that. Cuddle me only as a last resort, tease me in the meantime, drive me crazy.
But please, Becca, oh please. Keep being here to exasperate me. Please keep being that contrary little thug who loves best on her own terms.
You're a thug. Please, for all of us, keep being a thug.
I can't imagine life without you.
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