After months and months of tears and setbacks… we walked out of scan week with some good news. Scans are showing improvement in all areas except one. Jake has three vertebral compression fractures and while two of them were stable, one of those shows progression. The radiology reports from all of his images are back and state, “there is a dramatic improvement in number and distribution of multiple pulmonary nodules… and the number of lesions detectable within the liver has decreased.” This means the spots in his lungs and liver are less. There is much more to the reports but those were of the most concern after his last scans. His boney disease also showed areas of improvement and appears to be mostly stable. Praise Jesus!!!!!!!! It’s not over, till it’s over! And this little man is not giving in! We don’t know what his bone marrow shows since we didn’t biopsy this round – we know it’s there and measurable but it isn’t our top priority at this time. There is still a lot of disease but to know that we put a dent in it after months of progression is encouraging. And what’s more… the areas on the last scans that appeared to be improved WERE indeed IMPROVED. There was question as to the validity of those areas because of how much disease progression showed up last time. There were actually two areas that appeared better 6 weeks ago, his right leg and the skull. We were told that it could be that this is where the T-cells latched on and attacked (they were measurable, after all), or it could be that there is only so much contrast that is injected for these scans and with all of his disease, there wasn’t enough dye to uptake in those areas. Well, guess what… it wasn’t an uptake issue. The scans still show those areas as decreased disease. So, take that! The T-cells were there! They WERE working! What we think, is that Jake has too much disease to be ready for T-cell therapy and this may be more of a 14.18, residual disease, type treatment (now take this with a grain of salt, this study is way too early to have any official findings – this is only speculation at this point). Anyway, it’s been a long but good two days! I will say, it started a little sketchy yesterday when we learned that his platelets dropped again and we had to close the place down after scans with a transfusion but we did get to catch up with friends and that’s always a nice diversion for both of us. Jake and Charlie were able to play on their pads together and we mommies were able to catch up. I definitely enjoyed the time to visit. Please keep a few little friends that we were able to run into in your prayers…. Nathan, Charlie and Wesley, all Neuroblastoma fighters. Radiology was full of our NB warriors this week. And I have to share, it took us over 2 hours to get a 50 minute MIBG done today. I won’t go into all the details but there will be a letter heading out as there is a radiology nurse that really should consider another line of work. One of our nurses, Jason, was kind and helpful, but the other, not so much! So for now, we start another round of this same regimen on Monday. It’s five days worth of chemo, which by the way, this chemo combo is not used as upfront therapy because it only has a 30% success rate for most kids. Wouldn’t ya know, something we try as a last resort works for Jake. It brings me to something else going on in cancer research. Dr. Sholler in Michigan has a Guided Therapy Gene Analysis Platform study for relapse and refractory neuroblastoma patients where they determine a tumor’s molecular makeup to help predict which drugs may be beneficial for a patients cancer so they don’t give these toxic chemotherapy drugs just because it’s protocol. They offer personalized treatment based on that person’s tumor expression. Talk about the wave of the future right there! Oh, how I wish we had that 18 months ago! Jake’s platelets might be in a different place if we had known what drugs work and don’t work on his cancer. We could have chosen medications specific to his genomic make-up. The same neuroblastoma cancer can have different gene expression profiles and what works for one kid, may not work on another. This is why we need these trials. We need to get the word out. There are researchers out there making huge strides but they are blocked by something as simple as funding. Jake isn’t in a place for this to be much benefit to him anymore… he’s had most of the drugs out there and his marrow is shot. BUT there are kids out there in the beginning stages of their treatment and things like this could be their miracle. HELP us fund these trials! Spread the word… PLEASE SHARE Jake’s story and others like him so people know! And THANK YOU!!!!! So many of you are doing that. You walk this road with us, allowing us to lean on you and share our daily struggles, and for that we are forever grateful. Today is small in the scheme of Jake’s journey but it sure feels like a BIG thing. We are blessed by your constant prayers and we draw strength from your support on those days when we feel so discouraged. Better yet, we are thrilled to share Jake’s celebrations of days like these. They are far and few between but when they come, we hold on and ride the wave! God bless you for jumping in with us! Today as we were riding home, the story of Jesus and Peter popped into my head, reminding me to trust… “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.” “Come,” he said. Matthew 14:28-29 Peter went out to Jesus but fear set in and as he began to sink, he cried out, “Lord save me!” Jesus reached out his hand and saved him. We, like Peter, in our doubt and fear must call out to Him. He will save! Keep praying and singing… “I will call upon your name, keep my eyes above the waves, my soul will rest in your embrace, I am yours, you are mine.” I just LOVE this song… Oceans (Where Feet May Fail) by Hillsong! http://www.youtube.com/watch?v=ga3DmPRPAQQ Turn it up!
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 5th Floor of the Clinical Care Building for Jake’s hearing test. Then we’ll jump to the 14th Floor for labs, his IV, and a possible transfusion. Next we’ll head over to the 1st Floor of West Tower for his CT and we’ll finish off the day on the 5th 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 26th, 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 29th 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!