Here we are in September… Childhood Cancer Awareness Month. And it was two years ago, in September, Jake was diagnosed with cancer. We were told to gear up for the fight of his life, that the statistics were low, that getting to the other side of this disease would be the hardest thing we've ever faced but it was possible. The morning of his first surgery, my friend Paula encouraged me that someone had to be in that 30% that make it, why wouldn't it be Jake? There was real hope that a cure would come. Today, here we sit, two years later, and we are being told that a cure will not come. We've heard this before but this is different. Our doctors are realists, they are hopeful and brilliant and caring, but they see things daily, things we can't imagine. And they are saying it's not going to happen, that we need to make memories.
When they say things can turn on a dime… here is what that means. Last week we were making plans to spend 4 hard weeks in the hospital and then head to NY. Today we met with his team and were told that we should begin making plans of a completely different nature. Jake's scans came back with very aggressive progression in all areas, his bone marrow, bones, liver and lungs are all riddled with tumor. He has become chemo resistant. TCH feels that there is nothing more they can offer, other than palliative care of a very low daily chemo in hopes to slow things and offer pain relief. We find this difficult to accept, yet there are signs. He has been experiencing intermittent pain (he has pain, we medicate and he's fine again). He's happy and bouncy and normal but there are things Iike the moments that he cries out in pain and says it feels like it's burning on the inside and the outside, the night sweats, more and more bath time, the whimperring in his sleep. As a parent, you know that there is something different, wrong.
His scans have been stable for the last few rounds, even slightly improving. We expected the same to be true again but the cancer has blown up. We were warned this was possible but it's that deep denial that offers parents the hope needed to do these kinds of treatments to their child. Becuase of the progression they have pulled the HD-ICE which means NY is out. We've looked at everything. EVERYTHING! At the moment, any possible treatment lies in Michigan. We over nighted the new images to Helen DeVos in hopes of some kind of different news. NY, TCH and MI all agree the HD-ICE is no longer in his best interest. We ask for your prayers as it is unbearable to look at him, see him bouncing around and hear this news. Jake does not know any of this.
Because education and awareness is everything, we have a video we were saving for this month. Jake was on this trial last year at Cook's Children's Hospital. It is not intended to bash this therapy, it is intended to show what our children experience, things that no one knows, to show that more is needed. Our children are suffering, there are no good treatments but mostly THEY NEED MORE!
Please forgive how fast it's running. For some reason when we transferred it to YouTube the tempo increased, making some slides too fast. I don't know how to fix that. Please share, I know many don't want to see these things, but things won't change unless people know. [youtube https://www.youtube.com/watch?v=NL2OPhdsTPo]
Video Link: https://www.youtube.com/watch?v=NL2OPhdsTPo
THANK YOU for going GOLD!! We've seen so many of you taking the cause on in full force. We've seen many of your Whipping Childhood Cancer Challenges – keep them coming! (If you missed it… it's the national call to help us Whip Childhood Cancer with a pie to the face. If you take the challenge, nominate 7 friends, take a pie to the face and donate $7 to a childhood cancer foundation because 7 children die EVERY DAY. If you don't take the challenge, donate $46 to a childhood cancer in honor of the 46 children who are diagnosed each day. Post your video and let it spread!) If you haven't been nominated yet, don't wait. Start it up! Jake nominates you… every single one of you that are reading this today… YOU ARE NOMINATED BY JAKE. Let the world know that children are fighting for their lives and we need to FIGHT FOR THEM!
Please continue to pray for our family. Pray that Michigan has SOMETHING! Pray over the symptoms Jake is experiencing. Pray for a miracle!!
We send you all our love and gratefulness for walking this journey with us.
Many of you have asked what CHILDHOOD CANCER FOUNDATIONS we recommend for your Whipping Childhood Cancer Challenge. Here are some of our favorites…
CNCF – Children's Neuroblastoma Cancer Foundation
Alex's Lemonade Stand
Peach's Neet Feet
And for local foundations…
Competing For Hope
Jaquelyn Sky Foundation (Jackie's House)
Jesus Is Bigger Than Cancer
Linked With Liam
All of these are amazing, local foundations that serve TCH and MDA right here in Houston… and are tied to families that I know personally. They have FB pages or you can Google for their websites.
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