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The CureSearch Walk and beyond

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.


  
  Member Comments About This Blog Post:

OPTIMIST1948 10/10/2013 7:42PM

    Without the preface - you would never know this was anything other than an ordinary picture...

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TATTER3 10/4/2013 6:37AM

    You do what you can.....that picture speaks loud!!!

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SIMPLELIFE4REAL 10/3/2013 10:17PM

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I love that picture....it's wonderful!

How is she doing physically with the radiation?

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KNYAGENYA 10/3/2013 2:48PM

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WENDYSPARKS 10/3/2013 1:36PM

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NATPLUMMER 10/3/2013 1:09PM

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HILLSLUG98239 10/3/2013 10:50AM

    Thank you for getting out there, raising money, and raising awareness. A kid having cancer is a tragedy.

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Mom update

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.

  
  Member Comments About This Blog Post:

TATTER3 9/20/2013 10:23PM

    Keep Sparkin'!!! Prayers for you and yours.

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LKWQUILTER 9/20/2013 8:31PM

    Praying for all of you. Seems like when it rains it pours. ((HUGS))

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SIMPLELIFE4REAL 9/20/2013 6:31PM

    What a roller coaster the last few days have been for you. I'm glad your mom has stablized. I hope things go okay for her. She sounds like she wants to live life to the fullest....that vacation meant a lot to her. I can understand why she wanted to go for it.

Hugs,
Kay

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LEANNROCKS 9/20/2013 6:30PM

    Yay for the fighting spirit in your mom!

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JANETRIS 9/20/2013 5:59PM

    So glad your Mom is doing better. I'm still holding her and your family in my prayers... emoticon

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KNYAGENYA 9/20/2013 12:31PM

    emoticon

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HILLSLUG98239 9/20/2013 11:35AM

    I'm glad to hear she's a fighter. I guess we know where you got it from. emoticon

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NATPLUMMER 9/20/2013 11:09AM

    I'm glad she is doing better!! Hopefully the dialysis will do the trick.
There are so many outpatient hemodialysis places around that she'll be able to take a vacation and get dialysis while she's gone.

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DOGLADY13 9/20/2013 11:08AM

    You must be relieved. I'll keep praying for her, for you and for everyone in your life.

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LUCKYDOGFARM 9/20/2013 10:23AM

    I am so glad that your Mom is doing better! Lets hope that the dialysis works wonders for her! Will she be able to get the machine that she can use at home? I will be keeping her and Becca and all involved, in my prayers.

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4DOGNIGHT 9/20/2013 9:36AM

    WOW, you are really going through a lot right now. ANd your MOM sounds like a fighter for sure! You are definitely in my thoughts.

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RICHILA 9/20/2013 9:36AM

    Keeping the prayers going for you and yours. emoticon

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Are you kidding?! Now Mom in hospital

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.

  
  Member Comments About This Blog Post:

ILLINITEACHER52 9/20/2013 5:27PM

  Hugs and prayers! May they find the right blood to help her keep going!

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TONYATIME 9/20/2013 8:09AM

    I am so sorry your going through so much. My thoughts are with you.

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TATTER3 9/20/2013 6:42AM

    I care.....I'm so sorry you're going through all of this. Try to find spots of quiet time. Prayers.

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JANETRIS 9/19/2013 9:10PM

    Miss G I'm praying for peace and comfort for your family and your Mom. emoticon Jane

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MARALEYNI 9/19/2013 8:43PM

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BLUEJEANS27 9/19/2013 8:02PM

    I am SO sorry for your troubles. I spent 4 years watching over my mother's health before she died, and it surely is a full-time, stressful job. You are a good daughter!

emoticon

Julia

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DOGLADY13 9/19/2013 5:49PM

    No words. Sending comforting karma and prayers. If your recent experiences were part of a storyline, people would say "no way that could happen. It's not believable."

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LEANNROCKS 9/19/2013 4:40PM

    MissG, so sorry about this latest burden you have to carry. Know you are in my prayers.

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HILLSLUG98239 9/19/2013 3:53PM

    Dear God. I hope you start receiving some unqualified good news.

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LUCKYDOGFARM 9/19/2013 3:09PM

    MissG, you and your family are in my thoughts and prayers.

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4DOGNIGHT 9/19/2013 2:12PM

    Your family is definitely in my prayers.

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KNYAGENYA 9/19/2013 2:08PM

    I wish I knew what to say. I also wish I had a magic wand to use to make everything better. I will pray for your mom and light a candle for her when I go to Church. Let me know if there is anything I can do to help. emoticon

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SIMPLELIFE4REAL 9/19/2013 2:07PM

    I'm so sorry to hear about your mom. That is awesome that she was able to pull through this time. You certainly have had a very rough time of it lately.

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NATPLUMMER 9/19/2013 1:41PM

    emoticon

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Chemotherapy and radiation starting today

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.

www.curesearchwalk.org/faf/search/se
archTeamPart.asp?ievent=1062764&lis=1&
kntae1062764=110811D607AE4C7BB09611240
F9DABA6&team=5623885


(Be patient if the page takes a long time to load; it's just like that.)

  
  Member Comments About This Blog Post:

DOTTIEJANE1 9/14/2013 10:28AM

    Prayers for all involved in Becca's care .

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TATTER3 9/13/2013 6:23AM

    Wish I were there! Prayers

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NANA2PRINCESSES 9/13/2013 6:16AM

    Prayers for Becca, her family, and everyone dealing with this terrible disease.

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JANETRIS 9/12/2013 7:40PM

    prayers and hugs for Becca and the family emoticon emoticon

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LIALEEPANTHER 9/12/2013 4:10PM

    Sending wishes and hopes to everybody suffering like this... and hugs to you for supporting Becca... :(

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RUNNING-LIFE 9/12/2013 3:25PM

    You are all in my prayers emoticon

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SIMPLELIFE4REAL 9/12/2013 3:04PM

    I like to think of my chemo as something that will save my life. Hopefully, Becca's chemo will do the same for her.

Hugs,
Kay

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PAPAMIKIE 9/12/2013 2:51PM

    My prayers and thoughts

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MSANITAL 9/12/2013 2:14PM

    I am not in the area, but I will dedicate my walk tomorrow to her.. sending prayers as well,

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NATPLUMMER 9/12/2013 1:22PM

    emoticon

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SHARONSPARKLE 9/12/2013 12:20PM

    My heart is heavy - no child should have to suffer through such a thing! I will pray for all of you, especially Becca.

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LINOVER 9/12/2013 12:17PM

    I will pray for Becca and your family that everything goes well!

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LUCKYDOGFARM 9/12/2013 12:13PM

    Praying for Becca and her family and medical team too!

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HILLSLUG98239 9/12/2013 11:52AM

    I wish you peace and courage.

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STUDLEEJOE 9/12/2013 11:47AM

    I will be praying for all of you. I watched my wife go thru chemo 5 years ago due to stage 4 indometrial cancer. I am happy to say that she is now 5 years ned. That means no evidence of disease. Tell them to keep going strong.

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KNYAGENYA 9/12/2013 11:32AM

    emoticon I'll light a candle when I go to Church. I wish I could participate in the walk but I will be out of town. If there are any others let me know and I will make sure that I am there.

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NICOLED40 9/12/2013 11:29AM

    Many prayers and blessings for you and your family & friends. I can't even imagine what you all must be going through. God bless you all! emoticon

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RICHILA 9/12/2013 11:13AM

    My favorite prayer is Hasidic:
"Lord, I know you will help, but help me Lord until you help." emoticon

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JBALDWIN29 9/12/2013 11:08AM

  Prayers being sent

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MYUTMOST4HIM 9/12/2013 11:05AM

    Prayers are with all of you
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She's just a baby

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.

But.

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.

  
  Member Comments About This Blog Post:

SKIRNIR 9/12/2013 6:31PM

    Had to read a few posts I had missed when I saw the most recent one. I have to say, I do love how you worded this. Made me want to cry and laugh at the same time. I trully hope that Becca is around a long time to torture you and hopefully others who get to meet her in her long life.

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DOGLADY13 9/10/2013 8:21PM

    I know this is late. I don't know how I missed this.

Your pain is palpable. I wish there was a way to ease your pain, but I can't.

Becca is a wonderful, beautiful, beloved child. Keep loving her. Keep that positive, loving, fierceness present in her life.

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LUCKYDOGFARM 9/4/2013 5:33PM

    emoticon

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SIMPLELIFE4REAL 9/4/2013 11:44AM

    Being a thug might work to her advantage....it sounds like she is a fiesty fighter!

Hugs,
Kay

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NATPLUMMER 9/4/2013 11:06AM

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