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| From Jasmine |
Childhood Cancer, you suck!! You suck more than anything has ever sucked before in the history of suckiness!!! Can you imagine having to decide whether or not your 1 year old should have surgery to remove half of her brain?!! Do we need more research into rare diseases like ATRT?!!! Uhhhhh DUH!!!
A little background is in order. We have a local family that is very close to us. We met at the clinic a few years ago while Benjamin and I were waiting for chemo. They have the most beautiful daughter Jasmine who is fighting a rare brain cancer (ATRT). We have been through chemo, hospital stays, and scanxiety together. On more than one occasion, the girls and I have visited them in the hospital to bring them food. Jodie and Stephanie are like my brother and sister. We have laughed and yelled and cried together on a very regular basis.
One year ago, we found out that little Jasmines tumors had grown so large that she needed to have a hemispherectomy (a procedure where half of the brain is removed). Jasmine fought bravely through her surgery and radiation, and it looked like she might be one of the 10% that survives ATRT. A few months later we got the devastating news that several tumors had formed in her remaining half of a brain. So Jasmine and her family did what they always do…they bravely headed back into surgery to remove the tumors that had grown. After many prayers, Jasmine looked like she was recovering nicely and once again we though that maybe she had beaten this beast.
We found out a few weeks ago that new tumors have formed, and Jasmine is losing her battle with ATRT. She is now spending her last days on earth at home with her Mommy and Daddy who are cherishing all the snuggles they can get, even as they fight exhaustion. We are devastated by the news. There aren’t even words for the pain Jasmine’s Mom and Dad are going through right now. And as I finish up this post, I find that I do not have the words to express my emotions right now, other than Childhood Cancer SUCKS!!
Back to School Haircuts, an Interesting Thought Process
0 comments Posted by Nellie the Great at 9:52 AM
Autumn was very excited about school too, but she's not so sure about her teacher. I really do think she's going to have a fantastic year because she is such an amazing young lady! I'm telling you, my little Boo may come off tough as nails, but underneath that tough as nails exterior beats a heart of gold! She is truly one amazing super sib, and I am proud to have her as my daughter...
I digress....
So yesterday, both girls had a great time at school and they came home and we snuggled, and we played...and I broke Genevieve's bed (but that's a *different* story altogether...). So after we finished going to the hardware store to get the parts to fix Genevieve's bed, we headed down to Great Clips because the kids really needed a haircut! Autumn's stylist helped her find a cut that makes her look so breathtakingly stunning (the other kids looked nice too...it's just Autumn's was so striking!).
Soooooo...as we were sitting there waiting for the kiddos to finish up, I kept feeling my waaaaay too long hair and thinking how nice a haircut would be, but I'm too cheap to pay for a haircut when in a matter of only 20 days I'm just going to shave it all off anyway with St. Baldricks. And that got me to thinking about the timing of this whole thing...(My facebook friends have already heard some of my musings on this matter...).
I can't believe I didn't put this all together, but a few days ago I was thinking about how Benjamin was diagnosed with Histiocytosis on August 28, 2009. It was in many ways a life changing days for our family. It would not be a lie to say that that week in the Children's Medical Center was quite possibly the most frightening and earth shattering week of our lives. There are a few moments from that stick out in my mind about that week. One was a night that I sat in the doorway of Benjamin's room, silently sobbing because I was fairly certain that my son was going to die (at that point all they had told us was "it was cancer and it was *very bad*) and who was I going to get to speak at the funeral? The other very vivid memory was when we finally came home. The girls had reactions completely opposite of what I expected. Genevieve withdrew and was very distant with us. Autumn became the appendage that I never knew that I had, literally clinging to my body and crying about how much she missed us.
I retell these stories not to elicit sympathy or because the thoughts depress me. I retell these stories because I want to point out that Childhood cancer all too real, and the damage that it does to families is massive. Did you know that Childhood cancers are the #1 disease killer of children?! That's RIGHT...number one! Did you know that 12,500 children and adolescents in the U.S. are diagnosed with cancer each year?! That's right, in the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. EVERY STINKING SCHOOL DAY!!! And yet, Childhood cancers received less than 3% of the National Cancer Institute’s federal budget. Can you believe it? The number 1 disease killer of children receives less than 3 measly, pathetic percent of the NCI's budget.Are you shocked and disgusted yet? Because I know I was when I found out!!
On August 27th of this year, my husband and I will be shaving our heads and collecting donations for an organization called St. Baldricks. Did you catch the date?! August 27th...that's one day before the date of Benjamin's diagnosis!!
I intentionally chose this organization because it's main purpose is to fund Childhood Cancer Research. Last year alone they granted almost $15 million to Pediatric Cancer researchers!! If that's not amazing, then I don't know what is!! I also LOVE that not only are we helping to raise money that will be spend finding a cure for the #1 disease killer, but our bald heads will also serve as physical reminders of the all too real affects of Childhood cancer. In one fell swoop, my husband and I will not only be raising funds to cure Childhood Cancer, but we'll also be raising awareness. I don't know about you, but I was raised that with the concept that if you presented an opportunity to make a difference in the world then you should do it! So I present this question to you, my readers, who are no doubt exhausted after reading this massive post...what are you doing to help put an end to Childhood cancer?
Authors note: Yes, I realize it has been forever since I have posted. And yes, there has been soooo much going on in our lives. I hope to catch up soon.
Yep...you're reading it right...this post is logged in at 1:30 am. There's a reason for that...I can't sleep. The reason I can't sleep is that this morning I found out that one of the children at our clinic passed away this morning. Now normally I scrub clean my posts and make them all fluffy and upbeat so that ya'll don't worry too much about my sanity. But you know what, just this once I'm going to forgo that formality and lay it all out.
I HATE CHILDHOOD CANCER!!!
I hate what it does to the beautiful children that it touches. I hate how it tears at families. I hate that our children seem to be at the bottom of the list for any kind of research funds (don't believe me? Check this out..Childhood cancer facts). I'm tired, I'm angry, and I hurt.
That's why I am so glad that I have decided to "Brave the Shave" and be a part of St. Baldricks this year. Because if I have to do something weird to raise funds for Childhood Cancer, then by golly that's what I'm going to do. Our children deserve a brighter future, and I'm going to see to it that I do my part!
That's all the rant I've got in me tonight. Hopefully I'll be more cognizant in the next few days to put up a properly composed post.
Blessings, Grief, Laughter and Back to Blessings Again
0 comments Posted by Nellie the Great at 9:00 AMThese past two days are incredibly hard to put into words. Perhaps the easiest way to describe it is an emotional rollercoaster. Before I go too much farther, I want to let you know that I don’t use that term in an negative way. Quite the opposite…but I’ll explain later.
My father in law, Art Gregory passed away last week rather unexpectedly. Art was an amazing man in so many ways that it is almost impossible to put into words. To have known him was a blessing in and of itself. I’m trying, but I really can’t put everything into words. He was an awesome grandfather to my children, and to use my mother in law’s words “He truly was one of the good guys.”
I had the privilege to be able to go to Illinois for the grave side service. I was supposed to leave our airport at 5:40am, but like an idiot, I left my cell phone at home. So unfortunately I ended up missing my flight. That would normally be a *very* stressful event, but as it turned out, it was an amazing blessing (see, and you thought I wasn’t going to tie this back into the title!). Because I missed my flight, I was blessed to meet the most amazing British lady. Angela was quite possibly one of the most interesting people I have been privileged to meet. As we waited for our next flight, we chatted like old friends. She told me such fabulous stories about her life in England, then Spain, and finally Texas. She told me about her grandchildren who live in the same town as us. She told me of her biker husband who has a heart of gold. I told her about Benjamin and his journey, and she told me about her own battle with cancer. Anyway, eventually we boarded our flight and sat in our respective parts of the plane. That wasn’t the end of my journey with Angela though. Since I had a two and a half hour layover in Atlanta, I decided that I was going to become Angela’s stalker. Angela had problems walking, and I figured she might need some help, so I asked if I could escort her to her gate and maybe get some lunch. She agreed, and continued our fabulous journey together filled with amazing stories. It was with an almost heavy heart when we finally parted paths. I know that there is no way that Angela will ever read this (she doesn’t have a computer, she gave hers away), but I really hope that one day I will meet up her in the airport again!!
I eventually made it to St. Louis and was able to spend some wonderful quality time with my extended family while celebrating the life and morning the passage of my step father in law. It was an honor to attend his service, and I was truly blessed in so many ways by my time in IL. It is truly amazing to me how wonderfully blessed I have been in so very, very many ways lately!
And Mom Betty, if you’re reading this…AK. That’s all I have to say. :D
Authors note: This post was written 1/5/2011
