Author: Mardon Hickford

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

Our week on the floor is almost up and Jake has done great. He’s been unhooked in between treatment to run around and play with friends and his nurses. And I have to say that TCH has THE BEST nurses in the whole wide world! We love them and they have hearts of GOLD – truly! As much as we didn’t want to be inpatient right now coming off of our trip, he’s had a pretty good week. There is a little poem out there that talks of hospital corridors becoming our kids playgrounds, clinic being their classroom and so on. It’s true. Jake has a little friend, James, that he’s been up and down the halls with for days. James rides his scooter and Jake comes along beside him “taking walks” (without mom). He tells me, “I’m going for a walk now, it’s ok, you don’t have to come.” Thankfully, it’s been a week of little boy laughs, hide and seek, chase, Zombie hunts, lots of walks, and games of let’s see if we can scare Nurses Stacy and Danielle.  (In fact, look closely at one of the pics, those are his Zombie nurses laying on the floor after he shot them and ran off in his force field. They are LAYING ON THE FLOOR!  Hahaha! And in another, he’s hiding behind the pole while they search for him.  We don’t really know what the future holds right now  – after those last scans, we were all thrown for a loop and are having a difficult time coming up with his next steps. We’ll scan in a couple of weeks to determine where he stands. This next week, we will focus on talks with a couple of out of state hospitals, unless something comes up quickly here at TCH. Jake has been coughing (allergies we think) and continues to make those little throat clearings and this really has me on edge. The cancer in his lungs is on my mind every second of every day. Every time he does it my head whips around and he’s begun telling me, “I’m Ok, mom”, before I can even ask. Or he gives a thumbs up to signify that he’s fine. (I suppose I’ve been asking if he’s ok too often.) He has an appointment to check his hearing again soon as we’ve noticed that he isn’t responding at certain times and when we are in public spaces, he says he can’t hear us because it’s too loud. We’ve had some visitors and have to say thank you to Rafael de la Torre for presenting Jake with some medals that he earned while running and cycling on Jake’s behalf. Rafael is running for many of our friends, spreading the message, and we are honored to call him friend. Jake’s bestie, Maddi, also came play and venture thru the halls with him. He’s been sweet as sugar and his “chemo brain” from treatment a couple of weeks ago has subsided. His big thing right now is to say, “Mommy come here. Come closerrr. Come closerrrr. Clooooserrrr.” Then he grabs my neck and plants a BIG kiss on my cheek. He constantly tells me, “I just lub you, Mommy” and “You’re the best mom eber and I’m so glad I choose you.” He blows kisses to me and when I blow back, he catches them and rubs them on his face and heart. He says, “I lub my fam-all-y”. (But on those occasions that he is mad at me, he says he wants to “kick me out of the fam-all-y”). We play the I Love You More Game… I love you more. No I love you more. We go back and forth with, I love you to the sky, moon, sun, stars… now he just cuts to the chase and says he loves me to Heaven. It’s the furthest and best place he can think of, so he wins. We’ve had some hiccups with his meds this week. He’s on two chemo drugs, one is oral, one is IV. One day, I dropped his oral chemo. DROPPED IT!  We had to clean everything in gloves and with special, super-duper wipes. Then our nurse had to call to pharmacy, explain what I’d done and re-order it. That takes time so we got off schedule there. Then we had issues with him taking the chemo… to the point where Dad and I were going to have to leave the room and let our nurses assist. His chemo has to be given on a schedule and he was really stalling and fighting us. After it was over, through muffled speech he cried, “Mommy please don’t ever leave me. I just get so scared and I can’t take my medicine”. I won’t lie, he is a professional procrastinator, but some oral meds send him into a full fledge panic attack, and it’s heart wrenching. He continued to ask me over and over to never leave him for a good 24 hours. As parents, holding our kids down and squirting meds down their throat is no fun but you do it because you know you have too and it’s not like it will happen daily. For a cancer kid, meds are daily, it gets old quick, and you start to wear down. Your heart rips open because it shouldn’t be this way and sometimes you just want to throw the meds against the wall and scream, “no more, not today, missing this dose won’t hurt!” The truth is, it will, and so you bribe, threaten, plead, sometimes leave the room to someone else holding them down, and do what you must to push through. But sometimes, you just can’t do it without help. So thank you to the beautiful ladies of the 9th floor.. Leah, Stacy, Monica and Danielle. Their patience and understanding… and heartfelt help getting those meds down means more than they will ever know. We love and are loved by the BEST nurses ever!

Happy Weekend! Well, we returned from Jake’s Disney Make-A-Wish trip on Tuesday night and scooted right onto the 9th floor at 7:30am Friday morning for another week of treatment. Talk about not staying in one place for long!  We were just here, hearing that we would leave for Disney in a week, then spent the week in the world of fantasy and now, back again. As for Disney, it was a wonderful trip! We were so blessed to have all of our kids with us, including our oldest Meghan, along with her family Adrian, Nikolas and Ebby, which made the trip extra special. We have to say THANK YOU to all that helped make that happen! Having everyone together will be something we will remember forever! The week passed so quickly and Jake kept up really well. We only had one day that he needed some downtime so we stayed back at the village to swim and rest while Daddy took the big kids park hopping on all of the big rides. Jake LOVED the rollercoasters and road all that his whole 42 inches could fit (which was most). His favorite was Magic Mountain and I think we road it about two dozen times. We would finish and he’d run off toward the line, yelling, “Again, again!” The Fast Passes were THE BEST!  Jake’s #1 character to meet was Jake the Pirate and we met him the first hour of the first day! And Jake, Nikolas, Ryan and Daddy went on stage to open the Indiana Jones show as Jr Directors. This was a thrill for all of them but especially Ry. This is Ryan’s “thing”!  After the show Indiana came over to take pictures and talk with the kids, and then gave Ryan his hat. Ryan! Not Jake, but Ry!  This made his entire trip!  Most times the emphasis is on Jake and the sibs are in the background but at that moment, Ryan was the special one and this momma was SO HAPPY for him! Animal kingdom was our favorite park as the Safari was so realistic. The animals were super close, the tour guides were animated and full of information, and I have a feeling that no matter how often you take the tour, there is something new each time. We road twice and on one of the journeys, we had a delay due to a giraffe that decided to stop and eat at the edge of the road. Our caravan couldn’t pass so it gave us lots of close up picture ops. (I have to add that there was a falafel stand that was one of the best we’ve ever had…. Disney of all places!!!) One night, we made an excursion to the T-Rex Café where Jake found his little piece of Heaven on Earth! And I wrote this on Jake’s FB page but I’ll share here too…  we had LOTS of phone disasters… Emma was first as she dropped and cracked her iPod screen, then Adrian cracked his, Meg left her phone on the changing table in one of the bathrooms, then Kate followed by dropping hers in Magic Kingdom’s toilet and Daddy pulled up the tail end by leaving his in the rental car. The good news… Meghan’s was returned to lost-n-found, Daddy’s phone was Fed Ex’d home and Kate’s booted up two days later! We stayed at Give Kids The World Village, which was such an experience! EVERY family visiting has a story and are walking the hardest, darkest road imaginable, yet there was joy and celebration at every turn. It’s an exclusive resort of warriors, a place that is magical and wonderful but if given the choice, we would all give it up in a second. The village is mostly run by volunteers with the kindest, most gentle hearts – many were college students bussed in for a few days at a time, many were retired grandparents who were there to love and laugh with us. And the ice cream shop is open for breakfast, lunch, dinner and all times in between. Upon arrival our guide sweetly and grandfatherly stated, “You are responsible for your kids around the ice cream shop. If they enter, we feed them!” There was an American Village (Idol) Contest one night and Emma sang and received a trophy. The performers were kids and that was about the only time I thought I might cry. They were dancing, telling jokes, singing their little hearts out – being kids! There were families with their cancer shirts everywhere we looked and there was a commonality, a quiet understanding, something that actually brought hope as there was a realization that each of us are making it through. It was good and it was a week without a single tear. THAT was really good! As for today, Jake is feeling good, although his allergies have him a little congested and coughy which puts me on hyper-sensitive-mom-alert. The thought of something dropping into his lungs is terrifying. This admission, we have a great view of Fannin (for some reason, this side of the building is my fave), we’ve met a couple of new friends and been able to catch up with a couple of old ones and have had some of our most loving, fun, favorite nurses with us. Next weekend is the 2nd Annual NFL/MLB Photo Shoot as we gear up to push for GOLD in September. Now is the time to start thinking of how you want to Go GOLD too… your office, neighborhood, school teams, community, businesses. Our hearts swell with joy when we are out and see y’all supporting our fighters! We continue to pray over all of our cancer family and are keeping the faith for Jake and all of our kids. We will not loose hope and will stay prayerful for God’s mercy and healing. After all, “Faith is seeing light with your heart when all your eyes see is darkness.” Although the author of that quote is unknown, I feel certain it stems from scripture….  Faith is being sure of what we hope for. It is being certain of what we do not see. Hebrews 11 1:2