{"id":2878,"date":"2013-11-08T20:44:32","date_gmt":"2013-11-09T03:44:32","guid":{"rendered":"http:\/\/jacobhickford.com\/?p=2878"},"modified":"2013-11-09T09:30:12","modified_gmt":"2013-11-09T16:30:12","slug":"2878","status":"publish","type":"post","link":"https:\/\/jacobhickford.com\/?p=2878","title":{"rendered":"“The News”"},"content":{"rendered":"

\"J<\/a>First I’d like to start with a thank you to Rachel and Dawna for hosting Shop For A Cause next weekend, November 17th<\/strong>.\u00a0 It’s just in time for your\u00a0Christmas shopping!\u00a0 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.\u00a0 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<\/strong>.\u00a0 And they have\u00a0some awesome new shirts that say Jacob’s Journey with his website.\u00a0 And lastly, the planning is heavy underway for the Stompin’ Out Cancer 5K with Jake<\/strong>\u00a0on January 11th<\/strong> \"Shop<\/a>(which leads me back to Ground Up<\/strong> where you might want to think of getting some new running shoes to be ready to run with us!!!\u00a0 -grins-\u00a0 )\u00a0 This Sunday there will be a table at Trinity Lutheran Church’s Fall Festival where you can come say hello and\u00a0pick up registration forms for the 5K\u00a0event.\u00a0 We will have online registration here on Jake’s website soon.<\/p>\n

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Now on to “the news”…\u00a0 have to admit, I’m angry and jaded right now.\u00a0 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.\u00a0\u00a0 Here’s a little background…. 18 kids have gone through this\u00a0trial at two other hospitals, so this is the third time this\u00a0trial will be studied and has modifications. Each time there have been changes to the \"2013-10-28<\/a>study to make it more effective.\u00a0 This run had two changes… the GD2 cells are now more specific in what they target and the newly added\u00a0AP1903 “kill switch” drug,, which\u00a0was specific to the altered cells. So here’s the low down, and keep in mind that\u00a0we know a tip of the iceberg for obvious reasons of privacy and liability, but what we do know is enough.\u00a0In order to get the treatment\u00a0that Jake and many of the kids need, they have resubmitted the trial to the FDA \"2013-11-07<\/a>for permissions and rewritten it to get it off the ground again, but it will no longer include the AP1903 drug.\u00a0 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\u00a0in the study guidelines).\u00a0 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.\u00a0 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.\u00a0 It was made to target the GD2 cells, and only those cells, no others.\u00a0 As our doctor put it, “it is quite an elegant drug” as it\u00a0is \"2013-10-31<\/a>so\u00a0specific to what it goes after. The drugs that have been used in the previous two studies were\u00a0found to kill other cells also and had a higher toxicity, with more side effects.\u00a0\u00a0They now have to go back\u00a0to one of these\u00a0earlier, less effective\u00a0drugs. But it’s all we have.\u00a0 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\u00a0drug 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.\u00a0 We have had so many requests on how you can help and we are deeply touched and thankful.\u00a0 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 \"2013-10-26<\/a>if it takes off, we will enlist your help. To\u00a0face all of the things that go along with a\u00a0cancer diagnosis, and treatment,\u00a0and now this too…\u00a0 it’s unjust and horrifying and highly emotional.\u00a0 He’s our son,\u00a0he’s Jacob Grayson Hickford…. Jakey… and he has a family, and friends,\u00a0and a life worth living!\u00a0 He’s\u00a0serious and stubborn sometimes, he’s funny and full of personality, he’s bouncy and\u00a0athletic and kinda clumsy (to the tune of a newly broken collarbone).\u00a0 He’s sweet and lovey and gives the best “booty hugs”.\u00a0 He can talk to you for hours about Minecraft, and zombies, and bigfoot, and dinosaurs.\u00a0 He asks everyday if he has to go to the hospital and sinks when the answer is yes, \u00a0But when he gets there, he’s happy to see his friends and play with the iPads and Wii.\u00a0\u00a0And for a kid that gets stuck over, and over, and over, he will smile and give hugs to his nurses when\u00a0it’s done\u00a0(if they ask)\u00a0without\u00a0a grudge. He’s\u00a0secretly tenderhearted and his\u00a0heart has been\u00a0stolen by a few very special ladies\u00a0like Adriene, and Saraben, and Mrs. Jeanne.\u00a0 Today he was thrilled to be the “dino expert” \"J<\/a>for Mrs. Musick’s class\u00a0and all of his little “should be school friends”.\u00a0 When she e-mailed asking for his help, he was\u00a0so, so happy to send her information on all he knows about triceratops, along with pictures.\u00a0 He’s sick, but through all of the yuck he’s a little boy that\u00a0just wants to be a kid.\u00a0 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 \"2013-10-26<\/a>most\u00a0beautiful blue eyes, a smile that will one day have the girls swooning, and a\u00a0giggle that I can hear across the house.\u00a0 He’s God’s son,\u00a0on loan to us, but\u00a0he completes our family and\u00a0we aren’t ready to give him back… we need him here a while longer.<\/p>\n

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.\u00a0 A Thousand Years by Christina Perri\u00a0 http:\/\/www.youtube.com\/watch?v=rbLg6-MvOFo<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

First I’d like to start with a thank you to Rachel and Dawna for hosting Shop For A Cause next weekend, November 17th.\u00a0 It’s just in time for your\u00a0Christmas shopping!\u00a0 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 … <\/p>\n

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