Written by Mardon Hickford. Posted in Uncategorized

JakeHere 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

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over the top, and of course for the PICC line, and mostly that these cells graft and RAISE THOSE PLATELETS! Flexibility and change is a constant with this disease but we are hopeful as our Docs are calling on their peers, questioning other hospitals and trials, exhausting all options and truly pushing to bring an individual-based treatment to Jake. They are not giving up and we are TRULY THANKFUL!!!


God Winked!

Written by Mardon Hickford. Posted in Uncategorized

2013-11-09 13.32.44Just so many good things about today…….. good news – no transfusions at TCH this morning! And ONE POKE!  Big sigh of relief… he has seriously been stuck 3-4 times each visit between labs and transfusions.  Jake’s platelets are a whopping 23… just a smidgen above the “mark”.  And that designated mark is 20… at 20 or less, it’s an automatic transfusion. Although, with Jake, because he’s so active and has been feeling good (meaning he’s bouncing around enough to break bones and skin knees) they will transfuse him a little higher – like 23-24 – just in case.   And as you’ve seen we’ve had a few “just in cases”.  Nurse Shelly was so good to help us dodge the transfusion bullet.  At first they came back with a “yes, he needs a transfusion”. I sank, Jake starting crying, I asked a couple of questions, and Shelly went back on my request (on which I won’t bore you with details), and came back with a grin and a “you’re going home!”  I don’t think she knows just how much I appreciate her but she ROCKS! We actually have two ROCKIN’ Shelly Nurses and I love them both to pieces!  I always considered them Shelly 14 and Shelly 9 but now they are both on 14, which means more of our favorite ladies!   🙂   SQUIRREL!!!  giggles – see, good day! Anyway, Shelly said to keep him in a bubble and that we will do!  This really is good news and Thursday will be the indicator if they are really holding.  His last transfusion was 11 days ago… this is a record!  Since we walked out of those Ft Worth MIBG doors on September 2nd he’s had weekly transfusiJ and Runons… and for a good while it was a couple a week. His platelets MUST be at 20 or higher to make this trial…we’re gonna be there just in time!  Jake swears it’s all the oranges he’s eating.  He’s on a clementine kick and I’m not kidding you, I think he’s eaten the whole 5 lb bag all by himself. And bananas!  Bananas are BACK!  His tastes have circled back and bananas are now “delicious” again. In fact, he smells them and says, “yep, it smells gooooood”.  He told his Doc that he’s “eating helfy to kill Mr. C”.  I thought Doc H was gonna fall over. He seemed to like that answer, and momma does too! I have to say thank you to some very special people… to Ken and Rob with Ground Up, and to Dawna Schmidt and Rachel Parikh for hosting Shop for a Cause, we are so touched by all of the events held on Jake’s behalf this past weekend and to everyone that participated. We are truly grateful and enjoyed every minute of them. I also want to thank Rafael de la Torre who runs with the Snowdrop Foundation and ran the LaPorte Half Marathon on Sunday wearing Jake’s shirt to help spread awareness.  We are blessed! Oh last thing I have to share… when Jake was a baby we’d sit in his room and rock and J and Pearl5sing, and rock and sing… we’d sing Amazing Grace… his middle name is after all, Grayson, so it stuck.  As we left TCH today, we had been laughing and fist bumping, and skipping thru the garage screeching with joy for such an unexpected short day, almost running right thru the glass doors when they didn’t open fast enough. When we got in the truck and pulled out of the parking garage, the brightness from the earlier yuck had burned off and there was this beautiful day.  The radio fuzz from being underground found its station and what was playing???? Amazing Grace!   And at that moment, this momma lost it!  But it was all good… some days there are happy tears.  And for a little while the heaviness from my chest lifted… it was good.  God winked!    “The Lord will yet fill your mouth with laughter and your lips with shouts of joy.”  Job 8:21     Here’s our song today…   Amazing Grace (my chains are gone) by Chris Tomlin  and I love this youtube version because he offers a little lesson about the last part of the lyrics… take a listen…  http://www.youtube.com/watch?v=HkAZteruVAw

“The News”

Written by Mardon Hickford. Posted in Uncategorized

J and Ground upFirst 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 Shop for a Cause(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 2013-10-28 13.42.52study 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 2013-11-07 16.05.09for 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 2013-10-31 12.54.54so 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 2013-10-26 19.47.39if 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” J and dino1for 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 2013-10-26 15.12.47-3most 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