Tuesday, July 17, 2012

Too Late

I'm going to rant a bit right now, so please bear with me. I'm being open and honest with how I feel. I'm baring my heart for all to see. I'm hurting. I'm upset. I'm grieving.

I got a letter in the mail today from St. Jude Children's Research Hospital today. You know the one I'm talking about -- please send us a contribution/donation to help find ways to cure childhood cancer & accept these address labels with our thanks. It has a pic of a bald child who's fighting cancer on it. Well, not all children who have cancer are bald. Some of them aren't even able to have the chemo that causes them to lose their hair. And some of them are on low enough does of chemo that they don't lose their hair. I guess they figure that a pic of a bald child will have more impact than a child who still has hair. Try telling that to a mother who's child is fighting for his life and wishes beyond all reasoning that he could have chemo to try to save his life, but knowing it isn't possible.

It goes on to detail approximately how many patients they're treating each year & tell that thousands more will develop cancer. The inside shows a graph of average survival rates for several types of childhood cancer from 1962 to 2007.


But wait! I don't see DIPG on this list. Oh, yeah, I remember why now. That's because there have been NO significant strides in treatment or cure for DIPG in over 25 years. The mortality rate is still around 85% within 1 year of diagnosis. An article from St. Jude's own website says it quite clearly:
"High-grade gliomas are malignant tumors that arise from glial cells in the brain or spine. When a high-grade glioma originates in the brainstem, the tumor is known as DIPG. Fewer than 30 percent of children with high-grade gliomas survive the disease. For patients with DIPG, survival rates are even more dismal, hovering below 10 percent."
Great progress on that one, St. Jude. NOT!! And, I think the whole "hovering below 10 percent" bit is a little misleading. My guess is that it's closer to "less than 5%."

Notice that the section under the graph gives a list of warning signs. In my mind, they left off a few important ones: intense recurring headaches, slurred speech, loss of motor functions (worsening handwriting). Since Caleb died, I constantly monitor Caden for any sign out of the ordinary. It borders on paranoia at times. I'm much more likely to take him to the doctor for a simple headache now than I ever would have in the past. My greatest concern is that Caden will end up with cancer as well. My second greatest is that he turns into a hypochondriac because of my fears of cancer.

What upset me the most about this letter was the post-script. It says,
"I hope that your own family never suffers the tragedy of losing a child to an incurable disease. At St. Jude, we're fighting to conquer these killers, and one day someone in your own family may live because we succeeded."
When I read that, I felt as if I'd just been kicked in the stomach because, quite frankly, St. Jude, you're a little too late on that one. Our family HAS lost a child to an incurable disease, almost 17 months ago, in fact. St. Jude, do you really want a contribution from us? If you'd checked your files, you'd find you have an extremely significant contribution from us for your research -- our son's brain stem & tumor! We made that contribution to St. Jude for research in the hopes that no other family will have to go through what we did. It breaks my heart to think another mother will get your letter in the mail and cry like I did because she knows it's too late. Oh, and by the way, you can have your stickers back. I don't need them & I don't want them. It's too painful a reminder right now.


Now, don't get me wrong. I TOTALLY support what St. Jude is doing. It's just that the timing for it really sucks right now. I knew I shouldn't have even opened the envelope, but I did it anyway. I guess I was kinda hoping that it was a note saying they've made progress with treatment and/or cure for DIPG or even a "thank you" for the contribution we already made.

St. Jude hasn't done anything wrong and they are doing a tremendous amount to help stop childhood cancer. They have made significant strides in many types of childhood cancer. They depend on the contributions of others to help them continue developing treatments & searching for cures. Today was just one of those emotionally tough days and the wrong day for me to get that letter. I hope no one allows my little emotional tirade to dissuade them from supporting a wonderful place that is devoted to caring for children. Please remember that this is an emotional response from a grief-stricken mother & nothing against St. Jude or their mission.

We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


P.S. Although this letter from St. Jude came too late to help our son, it's not too late to help make a difference in the life of another child. Please consider a donation to St. Jude Children's Research Hospital.

6 comments:

  1. I have no words, Angela. Thank you for making a tremendous contribution to the research at St. Jude's. I pray that donation is the reason for adding DIPG to the lists of success in childhood cancer in the future. <3

    Jennifer Hearron

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  2. 17 months!!!!!!
    It seems like just yesterday we were shooting baskets from the sofa. His courage beads are my Lanyard for work ID.
    I've said it before, I swear he visits me in my sleep, soothes my brow

    I can't fathom yours & Richards pain. . I know what you mean about worrying about every sneeze, etc. I find myslef worrying about the girls, when I never did before. I am so much mire csutios.

    You SHOULD return that letter to St. Judes, with a note that you already donated your sons brain & stem. And do give them a list of those things to watch for, warning signs of DIPG. THAT is public education.

    Hugs from me to you all. Love Aunt Darl

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  3. Almost everytime I see Addy, I remember she is less than 2 mos older than when Caleb earned his wings.

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  4. Was going to say send that list of the warning signs of DIPG and ask them to add it to their other signs of cancer, but looks like Darl beat me to it. Hang in there kiddo!

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  5. We just received our monthly MDA magazine yesterday. There were 2 articles about Mito in it. 1 talks about a drug that could have helped Caleb if we had gotten the chance to try it. ugh! Punch in the stomach. We have just started getting the bills in the mail as well. For some reason those don't upset me as much as the magazine did. All that to say I totally understand your rant, and that you don't blame them but it hurts nevertheless. I hope your Caleb was there to greet mine!!

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    1. Jessica, it is extremely frustrating finding out there was something that could have helped "after the fact." And I'm certain my Caleb was there to greet yours the moment he arrived. Well, right after Jesus anyway. ;) I bet mine has already taught yours how to slide down a rainbow.

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