Faith Of A Child

Here we go again… scan week. Can I tell you how much we DO NOT like scan week?? We are praying that we will see some type of response to the last two treatments, or at least stable disease. Please pray with us for response… for STABLE disease… for NOTHING NEW! We elected not to have his Bone Marrow Biopsy this go-round. We all agree that with the last tests showing so much disease, the marrow will still be diseased, so there is no reason to sedate and cut him, just for confirmation’s sake. We’ll start Wednesday morning, bright and early on the 5^th Floor of the Clinical Care Building for Jake’s hearing test. Then we’ll jump to the 14^th Floor for labs, his IV, and a possible transfusion. Next we’ll head over to the 1^st Floor of West Tower for his CT and we’ll finish off the day on the 5^th Floor of Women’s Pav for his MIBG injection. Bet ya didn’t know TCH had that many buildings – and that’s not even all of them! We’ll head back Thursday morning for his MIBG scan. That’s the really long one and it’s hard for an adult, much less a five year old. MIBG is 50 minutes of laying perfectly still while that machine is an inch from his nose, without sedation – that’s his choice by the way. He doesn’t like to be sedated any more than he has too, he doesn’t want any more needles than necessary, and waking up from sedation isn’t his cup of tea. All the way around, it’s a lot to do in two days and he is so brave! He has taught us so much about courage and trust. He faces these tests with little boy faith that he will get better and that Mr. C will be gone one day. And I must thank all of you as your cards provide hope and big plans for play dates when he is well. That innocent trust stems from constant prayer that he will be healed. There is no doubt in his mind that he will indeed, be cancer-free one day. He expects it! Isn’t that the way it’s supposed to be… to expect our God, the Maker of Miracles to deliver? He can and he wants us to believe that and we should… Jake does. This little Handsome can sure put things into perspective some days. So we follow his lead and it is with that same faith that we march on. With that in mind, we have narrowed down to two options for Jake, one is in California, the other is in Michigan. The scans this week will be the first step in directing us toward which path we take. So many things must still fall into place. We will do one more treatment here at TCH next week while we get paperwork finalized. Those pesky platelets continue to be the driving force and will have the final say. If we can get them to stabilize we will head one direction, if we can’t, we head in another. But even with that said, he has to be selected for these trials. There are only so many spots and so many children. We have faith… God has opened every door so far, and though there have been many detours, we believe that He will continue to direct us in Jake’s treatment. One way or another, Jake will be healed. We want it soon and we want it here but as I sit here writing these words an e-mail hit from one of my besties, Sarah, reminding me that… “Our destination is home with our Father in heaven. It is easy on this journey to lose sight of our destination and to focus on the detours of this life instead. This life is only the trip to get home.” Bob Snyder  Whew… that takes my breath away and while we will not loose HOPE and the miracle for lots more time with him here, there is comfort in this thought. As for the rest of the household, the kids went back to school this morning after a week of spring break. And it’s crazy how even when we don’t have to be at the hospital, we are at some kind of doctor’s office. Today and tomorrow we will be at the oral surgeon for Emma as she has a blocked salivary gland that has produced a huge cyst-looking thing under her lip. Poor thing has to have it removed – ouch!  That will NOT be fun. We’ve stayed pretty isolated lately trying to keep Jake healthy. All the upper and lower respiratory stuff going around is so dangerous for him but we were able to attend an event hosted by Ground Up and Ball & Chain Crossfit. It was the Battle of the Boxes II and it is the second time they’ve honored Jake with a fundraiser. It’s so exciting to go watch these athletes challenge themselves and each other. Unfortunately we had to miss the NFL/MLB  Go GOLD photo shoot this year. As we began driving into town that morning, the rain began falling and we just couldn’t risk Jake getting sick. But even in the rain, it was a success and made the news that night!  Speaking of TV, for those of you that watch The Little Couple on TLC, Jake’s room sign was featured. That was really cool!  And there are a couple of events coming up that we’d like to share. Monday night there is a fundraiser at Fish Tails in Atascocita for our friends of the Jaquelyn Sky Foundation. Jaquelyn’s family is moving and rather than selling their home they will use it to provide housing to out-of-town fighter families that are traveling to TCH for their child’s cancer treatments. What an amazing blessing and mission!  If you can make it out, please do. And if you can’t, but you would like to donate household items or donate financially, I’ve included their website. www.thejaquelynskyfoundation.com   For our Dallas/Ft Worth friends, March 29th, is the 7th Annual 5K/1K Neuroblastoma Walk benefiting Cook’s Children’s Hospital. You’ll remember that is where Jake spent a week locked in a room undergoing MIBG radiation treatment. One of my dearest childhood friends, Stacey, has a group walking on Jake’s behalf. If any of you would like to join them, I’ve included the official walk page http://nbwalk.org/default.aspx  and the FB Dino Jake team page is  https://www.facebook.com/events/285210364977343/?ref=2&ref_dashboard_filter=upcoming On April 26^th, our friends at Ground Up Athletics are also honoring our friend, Grant Wahle, in his battle with Leukemia with a 5K event. We had so much fun at Jake’s 5K and it’s perfect weather for an event like this. We’ll be there and hope you will too!!  Here is the link to get registered…  http://www.groundupathletics.com/ground_up_register.html  And last, our friend Navid from ProJeKT 3000 is hitting the pedals once again on April 29^th to ride for pediatric cancer kids. His event is called 24 de Cure and he’ll ride for 24 hours straight, 300 miles, to raise funds. Check out his video as he is quite the advocate (Jake makes a tiny cameo in there too!). https://www.youtube.com/watch?v=djD-jq2yTKc  So there you are… many things to bring awareness!  We ask for prayer over all that we have going on with the next leg of Jake’s journey and over all of these events…  that they are all successful, that eyes are opened, hearts are changed and people are moved to help bring a cure!  And as I wrap this up, I leave you with the song playing behind me; I Am Holding On To You by David Crowder https://www.youtube.com/watch?v=pYR5A-tRKKo Create in me a pure heart, O God, and renew a steadfast spirit within me. Psalm 51:10