First I’d like to start with a thank you to Rachel and Dawna for hosting
Shop For A Cause next weekend, November 17th. It’s just in time for your Christmas shopping! You can check out the information on the flyer and if you don’t live here to join in the fun, you are welcome to contact them if you would like to order. Also,
Ground Up in the Vintage Shopping area is still offering 15% of sales to Jake’s Benevolent Fund through November 15th, when you come in with Jake’s flyer. And they have some awesome new shirts that say Jacob’s Journey with his website. And lastly, the planning is heavy underway for the
Stompin’ Out Cancer 5K with Jake on January 11th 
(which leads me back to
Ground Up where you might want to think of getting some new running shoes to be ready to run with us!!! -grins- ) This Sunday there will be a table at Trinity Lutheran Church’s Fall Festival where you can come say hello and pick up registration forms for the 5K event. We will have online registration here on Jake’s website soon.
Now on to “the news”… have to admit, I’m angry and jaded right now. How a company can pull a drug intended to help when they went into agreement for this trial almost a year ago, all because of rights and licenses and ownership, is beyond me, when it truly is life and death. Here’s a little background…. 18 kids have gone through this trial at two other hospitals, so this is the third time this trial will be studied and has modifications. Each time there have been changes to the
study to make it more effective. This run had two changes… the GD2 cells are now more specific in what they target and the newly added AP1903 “kill switch” drug,, which was specific to the altered cells. So here’s the low down, and keep in mind that we know a tip of the iceberg for obvious reasons of privacy and liability, but what we do know is enough. In order to get the treatment that Jake and many of the kids need, they have resubmitted the trial to the FDA
for permissions and rewritten it to get it off the ground again, but it will no longer include the AP1903 drug. There are 9 kids ready to go and 21 others that will eventually follow for a total of 28 that will take part (as written in the study guidelines). Jake will be the second one infused. The trial will go forward but not the way it was planned and with delay since all of this has transpired this way. The original drug has to be scrapped since they are BUTTS and won’t release it. The AP1903 drug was to be used as a “kill switch” should the genetically altered GD2 cells go awry and prove to be toxic. It was made to target the GD2 cells, and only those cells, no others. As our doctor put it, “it is quite an elegant drug” as it is
so specific to what it goes after. The drugs that have been used in the previous two studies were found to kill other cells also and had a higher toxicity, with more side effects. They now have to go back to one of these earlier, less effective drugs. But it’s all we have. The first part of the study with the newly designed GD2 cells will remain the same. We have to pray that the cells will not be toxic to Jake and that the drug isn’t needed to disarm the infused cells. As angry as I am, I’m trying so hard to trust in God’s knowledge and mercy… that he knows what we don’t. We have had so many requests on how you can help and we are deeply touched and thankful. While the study is being rewritten in order to best serve our kids NOW (as they don’t have time for legal battles), there is something brewing and
if it takes off, we will enlist your help. To face all of the things that go along with a cancer diagnosis, and treatment, and now this too… it’s unjust and horrifying and highly emotional. He’s our son, he’s Jacob Grayson Hickford…. Jakey… and he has a family, and friends, and a life worth living! He’s serious and stubborn sometimes, he’s funny and full of personality, he’s bouncy and athletic and kinda clumsy (to the tune of a newly broken collarbone). He’s sweet and lovey and gives the best “booty hugs”. He can talk to you for hours about Minecraft, and zombies, and bigfoot, and dinosaurs. He asks everyday if he has to go to the hospital and sinks when the answer is yes, But when he gets there, he’s happy to see his friends and play with the iPads and Wii. And for a kid that gets stuck over, and over, and over, he will smile and give hugs to his nurses when it’s done (if they ask) without a grudge. He’s secretly tenderhearted and his heart has been stolen by a few very special ladies like Adriene, and Saraben, and Mrs. Jeanne. Today he was thrilled to be the “dino expert”
for Mrs. Musick’s class and all of his little “should be school friends”. When she e-mailed asking for his help, he was so, so happy to send her information on all he knows about triceratops, along with pictures. He’s sick, but through all of the yuck he’s a little boy that just wants to be a kid. Not that the pharma company will ever read this blog but Jake is not a number or a dollar sign, he’s a boy with the
most beautiful blue eyes, a smile that will one day have the girls swooning, and a giggle that I can hear across the house. He’s God’s son, on loan to us, but he completes our family and we aren’t ready to give him back… we need him here a while longer.
This is our special song when we need to be brave some mornings… hearing him sing it melts my heart and sometimes it’s hard to keep a dry eye. A Thousand Years by Christina Perri
http://www.youtube.com/watch?v=rbLg6-MvOFo
Here we go again… a 360 degree turn around…. my head is spinning as we got a call this afternoon that they want Jake admitted tomorrow to give his stem cells another go. It should be a quick over night stay… in and out. We also received word that Jake has been moved in the trial. There is another kiddo that is in greater need and Jake will now be third. Because of this, it will push back Jake’s GD2 infusion date – into the new year – so our Doc has been researching something, ANYTHING, to stall his disease. By the time Jake get’s his trial cells, he will have gone almost 6 months without effective treatment. The stem cells didn’t seem to do much the first go round in getting his platelets to trend up but we have to pray that they will graft this time, that they can get him to that 75K mark so he can do some kind of chemotherapy. Our Doc has been talking to Docs all over the country and the platelet issue has us stuck with any therapy, anywhere. They can’t attempt anything without his platelets increasing. In the meantime, until he can start the study and get his GD2 cells, they have proposed trying Accutane therapy, in hopes it might offer some suppression. This hasn’t been attempted with progressive refractory disease like Jake’s, it’s usually a frontline, end of therapy, treatment… meaning at the very end of Neuroblastoma treatment, when there is minimal residual disease, it’s used to improve the survival for children in remission. Both are shots in the dark but there it is… a little ray of hope. We’ll head into the BMT floor tomorrow morning where they’ll sedate him for another PICC line, give him fluids and pre-meds, infuse his stem cells and we’ll stay for observation. For some specific prayer requests, please pray over the chest monitors and pulse-ox, they send him 
