Tuesday, August 31, 2010

Meet Survivor, John Michael!

I told you in honor of Childhood Cancer Awareness month and our "Light The Night" walk I was going to introduce you to some of our young leukemia/lymphoma friends. I had to do John Michael first because his story is as amazing as he is!!!

This is John Michael. His mom is our friend, Kim. I met Kim a couple of days after Cora was diagnosed. She was a volunteer for CURE Childhood Cancer at the time and she came to visit newly diagnosed patients. She has since started her own not for profit here in Savannah called, Hope For Savannah.http://www.hopeforsavannah.com/ We love Kim, she's awesome and we plan to do lots of work with her in the future. Anyway, here's John Michael's story in his own words.

"I was diagnosed with Acute Myloid Leukemia (AML) on January 5, 2005 when I was thirteen. Although I had very few symptoms, 95% of my bone marrow was malignant cancer. I was hospitalized the next day for my first round of chemotherapy. I stayed for over a month fighting the side effects of my various chemo drugs. My next bone marrow aspiration showed me to be cancer free! Because AML is so aggressive, we had lots more to do before the battle was over to keep it from coming back. I had three more rounds of chemo to wipe out all of the marrow (even the healthy) in my bones, to prepare for a bone marrow transplant (BMT). My sister turned out to be a good enough match to donate her bone marrow. After her surgery, where two surgeons removed marrow from 100 different places along her hip bones, I was transfused with this life saving blood producer. 10 days later I was in ICU fighting for my life. I had developed several life threatening side effects from the chemo and BMT, including Graft versus Host Disease (GvHD), blindness, diabetes, VOD (liver failure), and Avascular Neucrosis (AVN). I have had almost 200 blood and platelet transfusions, taken more pills than we can count, had two central lines and a portacath, spent more time in the hospital than at home the year of my diagnosis, had 7 bone marrow aspirations, drove to Atlanta from my home, 4 hours away, once a week, for several months, lived in Atlanta for 3 months during my BMT, missed being in school full-time for almost two years after my diagnosis, had two hip surgeries to help my AVN, repeated my childhood immunizations, and been isolated from friends and family for long periods of time.

Through all this I have grown closer to my family and to God. I know He has a purpose for my life. Cancer is not the title to the book of my life, it is merely a chapter. Even though I have been lucky to become cancer free, lots of kids every year don’t make it. We have to fight for the day when there is a CURE for every kid diagnosed with cancer. We also have to aggressively pursue CURES with less side effects. I have been cancer free for almost 2 ½ years!"

To me, John Michael is living proof that faith and prayer combined with modern medicine and excellent prayer can work wonders! John Michael really really went through it! He was a teenager at the time of diagnosis which is difficult for anyone. He has undergone not only the stem cell transplant procedure and all that came after that, but just this past year he had his 2nd hip surgery because of the toxic effects of chemotherapy. John Michael is an amazing young man who gives back every chance he gets. He graduated from high school last May and began his freshman year at Georgia Southern University just a few weeks ago. Talk about overcoming!!! Yay, John Michael! Thanks for being such an inspiration!!!

If you'd like more details about John Michael's journey visit his caringbridge site at http://www.caringbridge.org/ga/johnmichael/

National Childhood Cancer Awareness Month

September is National Childhood Cancer Awareness Month. We are so grateful and thankful for all the many research and support organizations that have refined and improved treatment over the years. It's so hard to decide which organizations to support and contribute to because there are SO many that have done so much for us. This year we've decided to raise funds for The Leukemia/Lymphoma Society. We're participating in our local "Light The Night Walk" on Friday, October 15th at Forsyth Park. We will all walk with illuminated balloons to raise awareness for the cause. Cora will have a special white balloon because she IS A SURVIVOR!!! We decided to support LLS this year because treatment for Leukemia specifically has come so far in the last twenty years, BUT we know there's a long way to go! We want every patient with a leukemia diagnosis of any type to do as well as Cora has done.

So what I've decided to do this month on our blog is introduce you to some of our "cancer friends" who have a leukemia or lymphoma diagnoses. I figure all our friends and family know Cora's story so well they could retell it themselves, so I thought I'd share more stories of young survivors who have directly benefitted from advances in treatment! I can't wait for all of you to read about these awesome kids!!! If you'd like to join us in supporting LLS you can make a donation in the box to the right to for "Cora's Light The Night Walk" or you can register to walk with us at www.lightthenight.org We'd love to have some friends join us! It's a party in the park before and after the walk!!!

Clinic Update


Hip Hip Hooray! Hip Hip Hooray! Cora's counts are up!!! Not a ton, but a bit! Enough for Dr. G to give her the OK to go to school on Tuesday! Her ANC was up from 735 to 1375! But her white count is still only 2.5 so she will go to school, and bathe in sanitizer when she gets home. She did great. She got vincristine through her port and checked out fine. Here she is with one of her two favorite nurses in the world, Melissa! We love you, Melissa!

First Day of School for Cade




We had very mixed emotions about the first day of school this year. Cade has been as SCPS for the past two years. Because I taught there for six years the staff, students, and parents there were like family! But realistically, one teaching and coaching salary doesn't cover a housepayment, feeding a family of 5, medical bills, yada,yada,yada, and private school tuition. Something had to give, and unfortunately it was Cade's tuition payment. But our school district has implemented some very good magnet programs in the last few years. Many private school kids have been pulling and trying these various magnet programs, so we decided to give it a shot. There are a limited number of spaces and all the programs are different, so I spent lots of time last spring looking at options and having Cade tested for each of these. He ended up getting a spot at Heard Elementary's Advanced Learning Academy. It's very different going from a school where everyone's known you since birth to one where you know only a handful of boys. (AND BOY WERE WE THANKFUL FOR THAT HANDFUL YESTERDAY!!!) He has two of his good buddies in his class.
I could tell he was really nervous. He gets hyper and talks more than usual (if you can imagine that) when he's nervous. He has a very sweet teacher and went right in and sat down and told me good bye. His Kindergarten class last year was half day, so it seemed to take an eternity for 3:15 to get here so we could go pick him up.
He liked it, I think. Cade's so hard to read. He said, "I like it and he was all smiles." But then as he retold the entire day he gave me an enormous list of negatives and prepared me for the fact that "he doesn't know the rules of this school, so please prepare myself and daddy for the fact that he may get in trouble."
His complaints included things like "there were so many people on the playground I couldn't find my friends." "I have 23 kids in my class (last year he had 9) and it took so long to call the names of the kids out that I almost fell asleep while the teacher was taking attendance." and "I can't remember where anything is and I need a map to get around that place."
So I think it may take a month or so for him to really feel comfortable and make more friends, but I think he's going to be challenged and I feel certain that he's in good hands. We'll keep you updated!

Wednesday, August 25, 2010

1986

OK I'm showing my age here. What 1986 film had the one liner shown on Clara's pjs for tonight???? (no gran and pop you don't get to guess!)
Let's have a little contest to see who can get it correct first!!!

PRUNES!




Cora fed Clara breakfast today!

Tuesday, August 24, 2010

Big Girl

Look at our big girl baby!
She now has 1 tooth poking through.
She can say "hi" on command!
And most importantly, she can play pirates!!!