This will be short as I’m just feeling wiped out. Jake has been moved up near the top of the list for this GD-2 GRAIN Trial. As I understand it, kids are ranked as far as whether they have other courses of treatment available. The study is two-part… one part of the study is the genetically altered cells that will be put back into his body. The other part of the study includes a drug nicknamed the “suicide switch” or “kill switch”, depending on what documentation you read. It is a drug specifically designed to target the cells they put back into Jake and kill them if they go awry. Here’s the dilemma… the kill switch drug is being held hostage by the pharmaceutical company that manufactures it. They won’t release it while they fight over rights. Jake’s platelets aren’t recovering for the chemo they hoped to give interim but they are so close to being ready for the trial since they don’t have to be as high to start it. The lab has been working on his cells and they could be ready by next week to infuse them back into his
We met today with our Docs to go over all of the things we learned last week and talk options. There aren’t many. BUT there is one that is falling in our lap at the most perfect time. IT’s a GD-2 T-cell/Antibody trial. This treatment infuses a new gene into T cells that will make them recognize cancer cells and kill them. They will take Jake’s blood, genetically alter his cells in the lab, and put them back. It’s much more complicated than all of this and you can read more about it if you like ( http://clinicaltrials.gov/show/NCT01822652 ) but the gist of it is that it’s an option and we are at a point that conventional cancer treatments are not working. Sadly, that’s where we are… clinical trials. We will still hit him with a week of chemotherapy before going forward with this to try and bear down on his disease but once we enter this trial there will be no chemo for at least 6-12 weeks. Any chemo drugs would kill the GD-2 infused cells. We’ve spent the week researching different trials and therapies, looking at the top NB hospitals and of all of them, this
As for today, Jake’s platelets were a whopping 27. Not even close to where we need them for chemotherapy. So we wait. Have I ever mentioned that I AM NOT a patient person? All of the TCH Onc Docs are consulting on Jake to try and put their expertise and experience together and they are calling in hematologists to look into why he’s having such a hard time with his platelet recovery. The good news, they don’t feel he’s heading toward bone marrow failure but they do want to check into immunoglobulin deficiencies. They still feel the challenge with his platelets are a result of all the beating his marrow has taken from the chemo but the fact that all of his other counts are mobilizing is curious. Jake feels and looks good. Because of this, I’ve asked over and over, if we can get him into some kind of school program, even if just a couple of days a week. We really wanted to put him in a bridge class since he missed out on preschool last year. Every time, they remind me that he’s just not there, the risk is too high. By looking at him, you would never know how sick he is. We’ve had some really great playtime since we returned from Ft Worth and gotten a little lax. He’s just so darn healthy for a sick kid! But that can all turn on a dime, so we’ll be pulling back the reigns again as we get him closer to chemo. We can’t take any chances that could take him out of contention for this trial. One of our Docs, Dr. Foster, will be out for the next few months on maternity leave. Please pray for her as she will deliver her baby next week. She has been with us from the very beginning and we are blessed to have her as part of our team – and will miss her! I don’t think she knows how grateful we are for her honesty and heart. She’s been there at every turn and held back tears many times as she’s had to deliver hard news. Her compassion means the world to us and I can’t wait to see and hear all about her new baby. We’re wishing her “baby blessings” and the most special three months of maternity vacay.
Quickly, I want to throw out a couple of things… first, Ground Up in the Vintage Shopping area is hosting a really cool fundraiser for Jake. Many of you know that I’m into fitness stuff… Beachbody ROCKS! (plug!) Ground Up will be hosting a CrossFit Box Competition Nov 16, and 15% of all sales, between Oct 30 – Nov 15 will go toward Jake’s medical needs when you bring in the flyer or mentions Jake at checkout. You know it’s about that time for new mid-semester sneakers for the kids. AND you probably need some new running shoes too, huh?
Last thing we want to share… there is a PRAYER SERVICE for Jake on Monday night at 7pm at Trinity Lutheran Church in Spring, Tx. The church is at the corner of Klein Church Rd and Spring Cypress. Everyone is invited – you DO NOT need to be a Trinity member to join us. We would be honored by your presence as we storm the Heavens in hope and prayer. Here’s some music to get you in the mood………. We Fall Down – Kutless http://www.youtube.com/watch?v=9hT4jKDiGdY
Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Over the past couple of days I’ve received countless texts and messages that you all have been thinking and praying over Jake and all of his tests. Thank you! Because of that, I hit Facebook a little earlier with a message and it went like this…