We will be doing cancer scans over the next two weeks and if they look good, then we will be taking his port out in a couple weeks as well! These are our first scans in 6 months! First time we have gone that long. Prayers please.
Now for his back...
As I mentioned before, we had a plan with a local doctor for his back pre cancer diagnosis. Then everything got postponed. Here is a fairly decent look at his back in December following his November cancer diagnosis...
You can see a slight curve, but it's not crazy. So that was December 2011. From there it was nonstop cancer stuff until May 2013; which meant we COULD NOT do anything about his back during that time. Here is another fairly decent look at his back from January 2013...
I know these aren't the best views. They weren't meant to show the progression of his back, but they do. Anyway, you can see how the curve got significantly worse. Got worse, when we couldn't. do. anything. Then enter the before and after a of his back during his days at TSRHC...
The left pic is before everything (June 2013) and the right is post traction and surgery (September 2013). So you can see how good things looked right after his surgery. The problem is it didn't last. We knew it could get worse above and below the area they modified on his spine, but for it to happen so quickly shocked us all. For George and I, it felt like our efforts and Clayton's pain that summer, accomplished little to nothing. It seemed like the surgery was not as successful as we had hoped. BUT X-rays don't lie. The surgery did it's job. Unfortunately Clayton's back found a way above and below the surgery to fandangle it's way right back into a similar curve. So again, here is September 2013...
Now here is April 2014...
And February 2015...
Not a huge difference from April to February (about 10 degrees), but from post-op to April (just 8 months time), his back got horrifically worse...again. Dr. Sucato is definitely saddened by this. We knew it would most likely try to curve again either above or below the fused portion as he grew, but we weren't expecting it to happen so quickly. The answer is a final fusion (fusing the entire spine together-means his torso can't grow). However, Clayton is too young for that right now which is the issue. Ideally they would like him to be at least 12 for that surgery, but Dr. Sucato does not feel Clayton will be able to wait that long. The youngest they would do it would be 8; but only if they felt they absolutely had to. So, for now, we wait. We wait for his back to implode so to speak and wreak more havoc on our lives...particularly Clayton's life. Knowing the future of trying to explain to him what they need to do and the looks of betrayal when he wakes up post-op, breaks my heart. Once again, prayers please.
About his kidney...Our other time bomb. I know some folks might be wondering because at Christmas, things seemed so urgent and then nothing. Well, we are just rolling with what the doctors tell us. And honestly, from one doctors visit to the next their sense of urgency changes. Sometimes more, sometimes less. They don't know what will happen, so neither do we. We are following Clayton's symptoms and his numbers. His creatinine that began swiftly rising in December, then came down slightly after adding BP meds, following a low sodium diet and placing a larger ureteral stent. Then it rose again a little before settling...for now. This means his kidney function DID decrease overall, but has stopped temporarily. When it will decrease again, we don't know. These days his urine is a shade of brownish gold, pink or sweet tea colored more than it's normal. So there is no doubt, he's sick. Because as much as the doctors don't know for sure, they do know for sure he will need a transplant. The problem with kidney issues is that to get the ultimate fix (a new kidney). You have to be REALLY sick. And he's not sick enough yet to start those procedures. So really, that's what we are waiting on... For him to get "sick enough". Sounds horrible huh? Tell me about it. And the real kicker? Both of these time bombs are showing a real possibility of imploding at the same time. Can you see the conundrum? It would be VERY bad. Seeing as how the nephrologist said he would have serious reservations about Clayton having any kind of serious surgery other than as related to his kidney, the whole thing is quite scary. Hello, welcome to hell. Duration of your stay...TBD. Please pray for us!
As a parent being sidelined to watch your kid get sicker and sicker or more and more disabled is the worst. So we are in a crappy place right now, but trying to enjoy life all the same. Things are about to get really bad for Clayton, so we are hoping things can hold off for October so we can take him back to Disney. Yep, we have a trip planned. We are going to stay in a camper at Fort Wilderness, attend the Mickey Halloween Party, visit the Give Kids The World Village (the place make a wish kids go- alumni get to come and spend the day there doing whatever) and check out Animal Kingdom again...we will also be paying a visit to his other urologist at Nemours Orlando-to get the ball rolling with a few things there. I am so stinking excited! I just want Clayton to be happy and have a blast. I hope all the bad stuff can wait until after that. Give my sweet baby one last thrill before his welcome back to the hospital days begin again. And before those few negative folks out there say anything about us fundraising for his back and kidney (which is coming next) and taking a trip to Disney, let me say this...I don't want to hear it. Seriously, don't say one word to me about it. My child goes through hell all the freaking time and he deserves better; the very least we can do as his parents is to try and give him a quick trip to Disney for some fun. Having to fundraise for Clayton's MASSIVE medical needs does not mean that we should have to sit by watching other folks live, while we bounce from one hospital to the next living in a never ending nightmare. That is how depression is born. Hope is found through laughter and happiness and faith that inspite of the bad times God has more out there for you. Part of that "more", is cherishing those moments with your family and sometimes making the opportunity for those moments. Knowing the little boy Clayton has become and knowing his likely reactions to our upcoming trip are one of the things that keep me going. It's one of the things that allows me to keep faith that while bad times are ahead, so are good times. We try and make the most of our everyday, but we need things to look forward to as well, especially knowing there is so much to dread. If it was you in my shoes with your kid you would do the SAME thing. Don't pretend you wouldn't. Not to mention, as with everything we are doing these days, we are approaching our trip in a modest, budget friendly, affordable way...hence staying in a camper at Fort Wilderness. FYI parents out there if you like Disney and don't have a Disney Visa, get one! We spent the last three years building up points on ours and have enough to cover the cost of our accomodations and two days of tickets, plus a little spending money. Big fan of the Disney Visa here!
Which brings me to fundraising...
With his kidney and back coming up, we are trying to figure out what we should be doing as far as fundraising goes. We are asking doctors and other families about the kidney stuff trying to figure out what we need to be prepared for. I wish it wasn't something that was necessary at all. Unfortunately, with the kidney stuff it really will be. Transplants live in their own little world and it is a tough one in every way including financially. Anyway, we are trying to figure out what we need to be preparing for because there in no doubt he will have a transplant. I don't worry so much about his back because of the funding resources for families at TSRHC, but his transplant funding scares me. Bad. Much worse than with his cancer. Which sucks, because fundraising quite honestly, makes me very uncomfortable. I don't like it. I don't like needing it, none of it. I know that soon we'll set up a go fund me page when we have more info from doctors. Other than that I have one thing up my sleeve. This one is a surprise that I'll add will make a great Christmas gift. Should be out in the fall! More details to come...
In the mean time, please pray for Clayton's back, pray for his kidney and pray for his cancer!
Thank you for your support!
Praying for Clayton & all the upcoming events in his precious life:) can't wait to see Disney pics!!!!
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