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
I have to take a deep breath as I begin this as it’s taken me days to finally sit and write. Things are not good. Jake’s disease is growing stronger, much bigger. He’s in good form but there is just more and more with each scan, each biopsy. Jake’s scans have come back pretty bad and we’re in a really hard place. His liver spots are indeed bigger and there are more. And worse, the one tiny spot in the lung from six weeks ago has grown to more than we want to count. His platelets are still too low for chemo and the reason they don’t usually go forward with chemo when low is because it can bring on tAML but we are doing some chemo anyway. There’s more to it but that’s enough to deal with. Time is the ultimate goal for a cancer patient, but sometimes time can also be the enemy and because of how quickly things have changed in just six weeks, we don’t have time to get him to another hospital for a different trial right now – that takes time to get everything in order – to the tune of a couple of weeks to a month with all the red tape that goes along with these trials and moving his care. We will do two rounds of this and in the meantime we’ll see if another trial will even consider him. We’re still praying with everything we have that something comes of this. This chemo isn’t as strong as the others he’s had so we don’t even know if it will be worth what we are putting him through but if you look at him – he’s doing so well, so how can we not? BUT he’s having these throat clearings, kind of like a cough but not deep, it’s the cancer in his lungs. He’s pale and he has dark circles under his eyes at times. There are signs everywhere that it’s growing and he’s just fighting and fighting. And we are too – we will NOT STOP! He really looks so good, it’s just unbelievable. He’s been granted a Make A Wish trip to Disney and they called earlier in the week to say we would go at the end of April. This morning they called to say it has been moved up to next Wednesday. It’s a bittersweet adventure but one that our family is looking forward to and we are so thankful that he’s getting to do this. We’ve been inpatient since Friday night and are being discharged later tonight. He’s done well this week as Kate was with us for a few days and we had some welcomed visitors. He hasn’t had these two chemos before… Temodar/Irinotecan (or as Nurse Stacy put it “I run to the can”). It’s supposed to bring on massive diarrhea. So far, none, but they say it’s coming and it can be pretty severe and dehydrating. So we have to pray that it is milder than usual so Jake can get on that plane Wednesday morning. He’s starting to exhibit that “chemo brain” behavior… the agitation and fussiness of the drugs in his system. Hopefully a little time in the magical world of Disney will offer some relief. I’ve said this so many times but it’s true… we are, where we are, because you continue to keep our family lifted in prayer. For all the blows Jake continues to take, he is laughing and playing, hanging upside down, and telling fart jokes because that’s what five year old little boys do. His favorite thing this week has been an Olympic skating video that I’ll share with you so that you can enjoy it just as much as we have (wink!). He’s watched it over and over and OVER, and each time he laughs like it’s the first time he’s ever seen it. You’ve probably seen it posted all over Facebook, but if not, you’ll get a little glimpse of what our hospital room TV watching has become. Farts and more farts! http://www.youtube.com/watch?v=zz_TBklZ4uQ
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As the weeks have progressed with this T-cell trial Jake has had increased leg pain. As I’ve mentioned, it hasn’t required medication just lots of warm baths. I think back to a year ago when he was on a morphine drip and how awful that was and we are far from that but it has been progressing and there has also been some tummy pain off and on this past week. Monday night Jake’s abdominal pain worsened and his tummy was tight and distended so we called in to our Doc and the research floor and made plans to get him in first thing Tuesday morning. We were worried (obviously) and all symptoms have to be reported for the trial. They did and x-ray and ultrasound and we were devastated to find that there was progression of disease. There were lots of new liver lesions and the previous lesions had doubled in size, and there was also a newly affected lymph node. We were praying the T-cell trial would push back his disease or at least allow him to hold tight. We drove home in tears wondering what we may have done to our son over the past 6 weeks… thinking how he doesn’t have time for set-backs, that progression means lack of response, which means ineffective, which means pull him from the study and move on. We made plans to meet on Friday to dissect the few trials Jake may be a candidate for and come up with our next step. In preparation for today’s meeting, the past two days have been a throw back to college cramming and moments of panic as this is so much more than just studying for an exam. All of these trials are in medical terms and I’m not medical! Two laptops, a medical dictionary, highlighters, pens, sticky notes, trial documents strewn all over my kitchen table, and LOTS of coffee are all I know of the past 48 hours. And that brings me to today, Friday. This morning we met to begin planning the next leg of Jake’s journey and while things are a bit more clear, we are in limbo for a little longer. Much of what we will decide depends on next week’s scans and biopsy. What we did learn today, which may be a little silver lining in all of this, is that Jake’s T-cell counts have shot up and are expanding beautifully. Talk about heads spinning. Frankly, this leaves all of us confused, very surprised and cautiously hopeful. The T-cells only expand (multiply) if there is an environment in which they can do so – meaning if there are cancer cells it can feed off of, then they live and grow. And this may very well be the source of his pain. What we saw in Tuesday’s tests was not pretty but we really don’t know anything more until next week. IF!!!… Jake’s boney disease is indeed responsive, everything changes! We will rethink the organ progression and the role that it plays in the future of Jake’s participation in this trial. Tuesday, we walked out crushed and today there is a tiny ray of light trying to make it’s way through the clouds. We choose the side of optimism and HOPE! We walked out with a couple of “if this, then that” plans and we have our top couple of hospitals that we’ll be contacting this week to open the lines of communication. It feels like we’ve been in this storm for way too long and the life of “limbo” has returned in a big way. I find myself wanting to fast forward to next week but then remind myself that next week will pass quickly and this cancer world is unforgiving when it comes to time. So we’ll wait and take the days God is giving and just keep praying that everything will be alright. https://www.youtube.com/watch?v=Dn7pWm4i0ZU Storm by Lifehouse