Author: Mardon Hickford

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

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 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

It's hard to believe that a year ago, we entered the big, ugly, wicked cancer world. My stomach aches just thinking about it. So much has happened, so much has been learned, so much has changed. Kind of fitting that September was Childhood Cancer Awareness month and that is the month that our world changed. Although we learned of Jake's cancer on Sept 27th, it was October 11th that his Neuroblastoma diagnosis was officially charted. One year ago, today.  At this point in the game, as far as the standard NB treatment "road map" goes, Jake should be about done with the toughest treatments. For those kids who are lucky enough to see first round success, they are celebrating about now. But for those kids who find themselves still fighting, the plan changes and the course continues, it grows longer and harder. At this time we don't really know where the journey will lead, we have plans in place but as you know, they change constantly.  I think we are all feeling a bit run down, exhausted really. Jake's bone marrow biopsy was this week and we have a ton of appointments full of scans and results next week. In fact, we'll be at TCH four days next week and by the end of the week, we'll know exactly how he responded to the MIBG treatment. At this time, we are scheduled for a second MIBG treatment October 28th. Yep, Handsome will spend Halloween isolated in a lead room and I think I'm taking that one harder than he his.  They feel the stubborn spots will remain and he will need more treatment – more treatment – there is still so much "more" treatment ahead. And these aren't maintenance treatments, these are hardcore, keep blasting him with everything they have treatments… MIBG, Bone Marrow Transplant, Antibody Therapy, Radiation. Maybe it's the anniversary date, but I'm heavy hearted and tired. I'm especially tired of the pokes and the procedures, the fear and the tears. I want him to be five. Just five. I want to go back in time and grab him out of this photo for just a day.  I want him to sit in a classroom full of friends, learning sight words, playing at recess, and having mom-n-muffins morning. He's at that question stage. He questions everything. "What does that mean?"  "Why does it work that way?"  "Who made that?"  "Why do we do that?"  "How do you spell that?"  He doesn't even know how to spell!  But he asks. The other day after we finished up his port access, someone in clinic told him "you're so strong and brave, I'm so proud of you, and you're going to beat this", followed with a big high-five.  As we walked down the hall, he asked me, "Mom, how do you know I'm going to beat cancer? How come Roderick couldn't beat his?"  He still asks about him often.  In his little boy mind, Roderick was older and stronger…why will he beat it when Roderick didn't?  These are the moments that I have to look away and try to answer without him seeing my eyes fill up. It's been a healthy month for Jake – as healthy as a cancer patient can be. We are SO THANKFUL for that. He's felt good, eaten well, been able to play outside. We did have to give him some of his own stem cells back to help build him back up from the MIBG and that went well – we were in and out of the hospital in no time. We actually stayed on the BMT floor. We've done that once before and some of the nurses remembered Jake. We continue to be in Clinic a couple of times a week with lots of transfusions, the usual. We've actually spent a lot of time in the 3rd floor infusion room for a change. It's different from the cancer floor's infusion room – not a play room, much more grown up. Like what you would find for adult cancer patients with the recliner and a TV on a moveable arm mount, with a curtain that can be pulled for privacy. He doesn't seem to mind because he gets his own TV to watch whatever he wants, and it's just inches from his nose.  The nurses seem to think he's a hoot. He's different in there, maybe because they don't ever access him so he's usually recovered and happy once we get downstairs. His little friends, Taylor and Nathan were in clinic this week, we also saw his friend Patrick last week, and his little friend Michael.  They are all doing well and that brought smiles and relief. I met a young lady, Jenae, at the store last week who has been battling a brain tumor. She was sitting, waiting for her mom to shop, and I think I startled her when I asked her diagnosis and how she was doing. We talked for a bit and found that her radiation Doc at Methodist will likely be ours too – when Jake finally gets to that phase.  I'm not sure how old she is, teens, but I'd love for y'all to pray for her. She was darling and just delightful to talk with. And, please pray for Nathan's parents (one of Jake's best buddies), as MIBG treatment has now been proposed for him and they must make that decision. It's definitely a hard one. And, lastly, please pray over the tests Jake will undergo this week. For the emotional and physical aspects he'll face. And for Henry and me, that we are prepared for whatever the news.  We expect good things, but we are a year into this and reality has set in. We know that there is still more ahead that Jake will need, we just pray for less, of the "more", and that these treatments have strengthened him to forge forward.  Oh, also… pray safety over our favorite friend, Saraben!  She's on safari in Africa looking for cheetahs for Jake (wink!).  Because of her trip, she hasn't been in clinic this week and Jake has missed her (we both have!) but he's done so well letting everyone know where she is. She's sent him a couple of little messages telling him what she HAS found, and that she is still on the hunt for the cheetah he told her to look for. We love her!!!!  So that's about it for the moment… we continue to praise Him in this storm and are so thankful for all of the kindness, prayers and help you all have showered us with this year!  I can never list, nor thank everyone enough. You have lifted us in prayer, with help, kindness and love. You are God's army of angels here on Earth for us.  We thank God for you every day!  From my devotion this AM…  "I will tell of the kindnesses of the LORD, the deeds for which he is to be praised, according to all the LORD has done for us – yes, the many good things he has done for the house of Israel, according to his compassion and many kindnesses, Isaiah 63:7

There are other hospitals that provide very profound korean plastic surgery procedures to help both men and women feel confident and it is high time that the stigma surrounding plastic surgery is gotten rid of.

So we all know FOOTBALL is BIG in Texas! What we didn’t know is how early it starts, how truly disciplined these kids are, and how fun it is to watch them play! For the month of September, the Bengals’ players wore yellow laces and the Widlkats’ cheerleaders wore hair ribbons and they used their venue to educate and show support for Jake, and especially for Childhood Cancer Awareness. Yesterday they honored Jake at their junior football game. It was also their homecoming so there was lots of excitement with mums, and families walking together thru the big Bengal Tiger blowup, and the WildKats cheerleaders dancing at halftime… it was all so FUN! And my friend and Bible Study sister, Ashley, brought her family to hang out and support Jake too! At halftime, our family was brought out and they presented Jake with a ball signed by all the players and coaches, and his own Bengals jersey. Then the coach brought all of the players in, to huddle around Jake, and pray over the game. I had tears! I wish I had video of

this part as it was something we’ve never experienced and it was so moving to have all these young boys repeat their team prayer with Jake at the center. We stayed and watched most of the game and enjoyed just being outside! A very BIG thank you to my amazing, childhood friend, Danielle, and the Bengals & WildKats for such a memorable day! She and all the parents worked so hard to schedule, and reschedule, and reschedule again, to make this all happen (rain!). It’s a day our family will always remember! Unfortunately, I took a fall a little later while holding Jake and we ended up in the ER. I tripped and we went down on the concrete, with Jake hitting

the back of his head, and me landing on top of him. It was so scary! All is OK but because his platelets are a constant struggle with weekly infusions, we had to get him checked out. It took us forever because the ER wanted to do blood work and we didn’t feel there was any reason for a CBC when were not in for fever or sickness, we just needed a CT. Then they came back with, “without knowing where his levels are, we’ll have to keep him 24 hours for observation”. What????? All because we asked them to use his CBC from Thursday to get a gage of his counts. Every time his port is accessed, there is risk for infection and we haven’t had the best experience with the ER accesses. And even the nurse didn’t understand the orders and agreed that there wasn’t a need for this information. We asked to speak to the on-call Onc Doc from the 9th floor but they wouldn’t come down so we held our ground. And to Jake’s relief, there were no pokes yesterday. The next two weeks will be full of tests, scans and pokes so we were trying to limit any needles that weren’t necessary. In fact Jake has a CBC, transfusion, and bone marrow aspiration TOMORROW. With that in mind, I ask prayers over this. Sedation is never fun and we are praying that his bone marrow comes back with less disease. And while asking for prayer, please. please pray for our friends, The Jenkins. Their daughter, Jaquelyn, walked through Heaven’s gates yesterday. For her, there are no more pokes, pains, worries or hospitals. Our families came together during the NFL/MLB photo shoot and she was actually at TCH the first time we came in for treatment with Jake. While we were caught up in the emotions of all of the “firsts”, she was sitting to the side and smiling back and forth with him. Over the past year, we’ve been in clinic together and Jaquelyn’s sweet, shy, beautiful smile would catch Jake’s attention and he’d flirt back with sheepish grins, growing bigger and bigger. She was the oldest of five, just fifteen and so beautiful – please pray for her family. These are days where the sunshine and the rain meet in the middle and you wonder why things happen the way they do. Truth is, we have to trust in our faith, that that there is a purpose for everything and everyone. Jaquelyn’s smile was a ray of sunshine for Jake and yesterday she met the Son, but today, it feels a little like the rain. This song makes me think of Jaquelyn… He Is With Us song by Love and the Outcome http://www.youtube.com/watch?v=Z6mEQS2fsWE Rest, smile, and fly high, beautiful Jaquelyn.

“This place where you are right now, God circled on a map for you.” – Haftz “Rejoice that your names are written in heaven.” Luke 10:20