Ready and Waiting

Written by Mardon Hickford. Posted in Uncategorized

2 new drgsThis 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

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body BUT… the trial is now in jeopardy. Jake doesn’t have options… this is it! I’ve heard many times of lives being in jeopardy because of things like this but never have I really understood what this means. Today, I understand. Lives will be lost if this isn’t worked out. A group of kids are ready and waiting, they don’t have much time, their cancers are growing. The trial is ready to begin and there is nothing they can do but wait for legal teams to battle it out. How can our children have such little value? There are no words, all I can do is sit here with head in hands and pray. Please pray with us.

The Plan

Written by Mardon Hickford. Posted in Uncategorized

J and park10We 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 ( ) 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

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seems to have the most promise for Jake. The beauty of this trail is it is HERE! TCH is spot on with antibody/immunotherapy research and we don’t have to go to another hospital, or another city, we stay right here… our Docs… our hospital… our home! That in itself is a HUGE blessing! One door closes, another opens and we pray Jake will be ready to go in December.


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 2013-06-27 11.06.56-1toward 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 reignJ and Ground ups 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?


J and Prayer serviceLast 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

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.”

What Now?

Written by admin. Posted in Uncategorized

2013-10-17 09.57.22Over 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…

“I will post more later but I know many of you are on pins and needles. Jake has been pulled from the MIBG Trial in Ft Worth. We will not be returning at the end of the month after all. There is new disease. His cancer has spread. We are trying to figure out his next steps. Thank you for ALWAYS praying. He’s feeling really good right now and we will continue to fight with everything we have. I know I don’t have to ask because you all are so faithful but please keep us lifted in prayer right now… this is really hard to hear.”
This is not AT ALL what we walked in to hear. We still expected to see some disease but it never entered our minds that there could be new disease. Feels a little like the WHAMO’s of last year. Over the past 12 months, we’ve seen slow but steady decrease in disease so this wasn’t on our radar at all. Jake has been removed from the Ft. Worth Trial due to the progression of disease. They don’t feel it was beneficial for him since there is growth, there should not be growth, only lessoning of disease. The glimmer of good news is that his bone marrow came back clean. BUT for how long we don’t know. It may be temporary because the bone’s cancer cells will likely move back to the marrow. There’s so much to that I won’t go into but that’s the jest of it. He is now categorized as “Progressive Disease” and that eliminates many of the therapies that were on his original road map – they will not be effective until we can get his burden of disease at a c2013-10-16 15.08.17ertain level. We don’t know how progressive or fast moving his disease is, we just know there is new disease in new places and our Docs used the word “concerning” over and over and said His disease is “proving harder to treat than we imagined”. They said that while they still hope for a cure, they don’t know that a cure will come. We may have to look at maintaining his disease as best we can for as long as we can. Now with all that said, his body still has less cancer than when we started and that is something we will hold on to.
So what now??? Well, we are limited. For now we are waiting for his stem cells to graft so that his bone marrow will begin producing on it’s own again. We need his platelets to hit a magic number. He needs treatment to slow the progression. They want to do a round of the last chemo drugs he did. Those seem to have the best results we’ve seen. Then, there is a TCH Phase 1 Antibody Therapy Trial that they hope we can get him ready to qualify for. It will open up in about 6 weeks. That is perfect timing to 2013-10-17 11.02.12get this round of chemo in and allow his marrow to recover. He fits all of the criteria except the
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marrow recovery aspect. That is the one thing Jake has struggled with all year. Today, we sat in a room with Doctors who truly care for our family, who held back their swelling eyes to talk and ask, “do you want to continue with Jake’s treatment?”, to honestly tell us that we are low on options right now, that we may hit a place where all we can do is treat Jake’s disease and symptoms. They were not negative, they were compassionate and truthful, and we are so thankful for them. As we tried to talk to Jake about the meeting, his comment was, “if the cancer is growing bigger, how come I can’t feel it?” We hurt tonight and we’re afraid, but for now, we will allow him all of the good days we can and will FIGHT LIKE HELL when our Docs say go!