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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