June 28, 2012

June 30, 2012

Things changed...what's new? We will now be doing our radiation first and will be starting it on July 9. During that same week we will be doing five days of outpatient chemo. Yea, I know...more chemo. The good news should be that it will be low dose and should not affect his blood counts very much nor should it cause him any other significant side effects. I don't even know what to say. I have a million thoughts swirling in my head about this newest information, but for now that will have to wait for later.
Get ready for this, because it might be hard to follow...IF we follow the new plan, the radiation will go from the 9th to the 13th and then finish up on the 16th and 17th. The rest of that second week will be spent doing another round of MIBG, MRI and CT tests. Then the week of the 23rd we should be able to come home for 10 days or so. We will be starting the GCSF shots (shots to boost his white cells) on Wednesday the 25th in preparation for finally starting our first round of antibody treatment on the 30th. In a nutshell IF this goes as currently planned, then we will be gone for two weeks, home for 10 days then gone for a week then home for three weeks before we have to do anything again. The biggest change was that they once again decided to give his kidney more time to recover before starting the 3f8 and so they decided that we would go ahead and do the radiation beforehand. Is all of this set in stone? No. Will it change? Maybe. Does it suck? Yes ...and no- we like that we will have a full three week break between the first and second round of 3f8 now. But please don't hold us to any of this, because we don't have a good track record of things going as planned.
I know I can't escape this post without elaborating on why they want to do a low does round of chemo. As you know, I have said many times that this is a VERY aggressive form of cancer. That said, to the best of the doctors' knowledge, Clayton is still NED, however, he has not had any cancer treatment since finishing the last round of chemo on May 6th and so the doctors want to be cautious (we have not been treating cancer the last two months, but rather recovering from chemotherapy and it's side effects) The doctors of course know how persistent this form of cancer can be and so they want to give Clayton a little something extra on top of the radiation just in case there is any "activity" going on anywhere else in his body. From there we will do all of the tests to hopefully cement Clayton's status as NED for now. The fact is that if there has been any cancer activity between the tests at the end of May and now, we probably won't know because they are going to treat it as though there might be and give him the low dose chemo which would hopefully destroy any possible active cancer cells.
Oh this is so frustrating. We can't reverse time and we can't move forward, we are just stuck. We are stuck watching our friends and family and people we grew up with live their lives while we are fighting this awful beast. There is little to no focusing on our careers or figuring out exactly what we want to do with our lives or chasing our dreams. It is all on hold. We were finally putting the pieces together from what we went through with Clayton as an infant and figuring out a way to have the lives we wanted and still give him what he needed... and then this. Now we have to do it all again, but right now we can't do anything. Day to day people cannot count on us because we never know what will happen. This will make us stronger and one day we will be able to move forward again, but now it just stinks putting our lives on hold during a time when everyone we grew up with is surging forwards.

Anyway, we're off to the Clayton Ladd Benefit Barrel Race 2012...more information on Facebook.

June 27, 2012

Still here...We've just been home for a few days working and picking up some pieces. I myself have taken to purging. I have built up the nerve to finally rid our house of some things and tackle the overwhelming pile of mail that has built up over the past few months. We have doctor bills and prescription bills and cards for Clayton and insurance claim notices and so on. Loads of them...all of them. I have all Clayton's medical stuff organized in the big three inch binders, so I've had to sort everything. I can say that having seen the amounts on many of the insurance claim reports, in addition to the bills from MSKCC, I feel confident saying that Clayton's treatment has definitely passed the million dollar mark. Not that it matters; it doesn't. One day though I am going to tally the costs for a grand total just out of curiosity. I just opened a claim report from his tumor resection and his surgery and treatment on April 20th (only on that day) at MSKCC and saw it cost $210,792.84. That's crazy! Obviously we do not owe that or anything remotely close to that. We are beyond fortunate to have the best insurance ever! (And amazing people who have gone above and beyond to make sure that we are in a position so that we do not have to feel overwhelmed by any potential medical bills.)
Anyhow, Clayton is doing great. He has aquired one of those little American flags and runs around the house waving it. He is so happy to be home now. He had a ball too when we made a trip to Lowe's and he got to drive the "race-buggy" around. We are not seeing any more clots or any more blood in his urine which is awesome. Yay!

On another note a little girl passed away from neuroblastoma on the 25th. She was diagnosed in November of 2010 at just 14 months old. By July of 2011, her tumor had started growing back in her brain. They did come to MSKCC to try and undergo their pioneering treatment (which is the best in the world), but in the end, the cancer had its way. Unfortunately, the history of the disease shows that if it comes back in the brain, it is often very very aggressive. Please pray for her parents. I hope to never know what they are going through, and desperately hate it for them.
I HATE this disease! This stupid stupid disease. It is like knowing a cold blooded killer and having to fight them off blindfolded. I think most parents would agree that if someone ever hurt their child in anyway, that they would want to- at the very least- rip off that person's arms and beat them with them...only that is never an option here because you can't see this "bad guy". This bad guy will come and go as it pleases; without warning or consideration- or arms to beat it with. It will be years before I will feel safe from the grips of this "killer". And as you can see from the little girl's story above, this disease can easily relapse at the point we are at now. That is why we cannot let our guard down. That is why my nerves have been shot over having to delay our antibody treatment and radiation. We need to start them Monday. We have to keep fighting this, we are not out of the woods yet. Some kids never reach remission and some reach it and stay that way; others however, can go into remission for three months or for fifteen months before relapsing. The ladies I work with probably think I'm crazy with all of my sporadic babbling this week, but it's a means of forgetting about not only what we have to do Monday, but what this disease could be doing while we wait...

June 23, 2012

Coming home...YEP

Well we made it to the airport for now. Hoping nothing goes wrong...

Updated... Uh oh, we made it to Atlanta...we might actually make it...

Clayton is having fun in the mean time saying hello to all the other passengers...

Hot Dog! We made it home!

June 22, 2012

June 22, 2012 **UPDATED**

Oh crud. We've got clots again. Yesterday afternoon it was just a few small ones in some of his diapers. Then right before bed, I saw a larger one- which was still not that big. Then a few moments ago at 1 am or so I changed him before he overflowed his diaper and there was the biggest one yet (yet just meaning this time around, not compared to before the surgery). I would say it was thumb-sized. So now we'll have to call them in the morning and see what they say. We'll probably do labs to check his hemoglobin; it was 9.1 Thursday noonish; down from where it had been holding around the 10.3 mark. That is not necessarily abnormal though after his procedure. For that matter the clots might not be unexpected either. I say that because no one can say for sure right now if they're a result of the procedure or having urine going through his bladder again. I suspect the doctor will want to see what things look like through the weekend. It could stop today or tomorrow...who knows.
All this means that we will either be postponing our trip home until Monday or altogether. Oh yea, we were planning on flying out of here at 7 this evening and heading for home, then flying back up here on July 1st. We hadn't really told anyone we were doing that for sure hoping we wouldn't jinx it. That didn't work. Anyhow, we may still get to come home for a bit; unfortunately, we just don't know yet.
I'll let everyone know how the day goes.

So Clayton woke up and had another larger clot this morning. We spoke to the nurse practitioner who spoke with Dr.La Quaglia, and he gave us the OK to go home. Their hope is that the clots he passed over the past twelve hours or so are just his bladder working itself out in the midst of all the changes. Remember, he hasn't had urine going through his bladder since June 1st. Hopefully they are right. George flew up here and got in around 1 pm, then we scooted off to the hospital for a dressing change for one of Clayton's tubes. Thankfully, as the day progressed, we did not see many clots and the few we did see we're smaller in size. Then it was back to RMH to pack a few things and head home.
Which brings us to: are we coming home and when? YES! We were suppose to fly out of here at 7 pm, but our flight got canceled due to bad weather, so they rescheduled us on a flight tomorrow evening. I won't lie, I didn't mind a bit because I am more comfortable being close to MSKCC while we keep an eye on the clots for another day. If we need something, I like having them close. We'll let you know if we actually get to come home tomorrow! If so, it is only for a week.

On an unrelated note, I spoke with our neighbor at RMH who is from Greece (not our roommates from the hospital though) and she gave me a few pointers. Her son is 14 and they have been doing this for 5 years. They had a couple years of treatment in Greece, and then they have been treated here for two and a half years. During that time they only spent 6 weeks at home! Crazy! Anyhow, the point to this is that one of her biggest pointers was "no sugar". There was a bit of a language barrier in our conversation, but I know I caught that. I have heard about the relationship between neuroblastoma and sugar before, but to hear it from a mother whose child has relapsed- maybe more than once- it really struck me. What have the past five years taught her that made her say that of all things? Maybe that is another one of those things that I need to act on now, not later. No one has stressed it to us yet; so far the main concern has just been keeping weight on him. Regardless, it had me doing some research and I think that after that, our family will be jumping on the organic- paleo diet- sugar free band wagon. There seem to be too many benefits in regards to cancer not to. The fact is we have to change his diet so we might as well make it our lifestyle as a family. We need him to be healthy and he needs us to be healthy too. Just thought I'd share this in case any of our family wants to jump on that band wagon with us...hint, hint...

June 21, 2012

June 21, 2012 **Updated**

He's out and he's up. The doctor said it was hard to get the stint in because of the blockage, but it's in. I think the plan is to keep the stint in for 3 months or so. It will all depend on his kidney. After the procedure they held us for a few hours and had Clayton on three hours bed rest. He was bright eyed and bushy-tailed almost as soon as he woke up though.
For now they exchanged the base of the old nephrostomy tube for a new one and have left that in, but it is capped off. If Clayton starts to get a fever or vomitting or has pain on his right side, then I can uncap it and hook it to another bag so it will once again drain from the kidney's collection chamber. Otherwise, he should urinate as normal now. If we have any problems though, we have a capped off tube going in his kidney and another in his bladder. As long as everything goes well over the next week or so, then we will take out what is left of the nephrostomy tube on July 2nd. We are not sure when we will be removing the super pubic catheter just yet. Everyone is hoping this will remedy the situation with his kidney and be the last piece of the puzzle so that we can move forward.

In regards to my post from the other day, I don't want anyone to think I'm about to break because I'm frustrated; it's just part of this crazy crazy ride. I just vent here and beyond that I try not to talk about it. Honestly, beyond what I am required to talk to doctors about I have done some serious shutting down when it comes to talking about it. I am not implying people are not welcome to ask how Clayton is though. We are so fortunate to have so many people that care and I don't dare take that for granted. I can't explain what it does to you when you are consumed by something like this the way we have been, but there comes a point where you just grow weary of it (at least for me).

June 21, 2012

So yesterday was a very boring and very hot day. We had no doctor appointments and it was too hot to get out (90 degrees and being surrounded by concrete is not a good combination),so we wasted away the day at RMH. We were both having some serious cabin fever!
They changed the time of his procedure today, so we got here at 6:45 and it started at roughly 8:40. It shouldn't be too long...

June 20, 2012

June 19, 2012

I'm not big on talking about my feelings, but suffice to say I'm furious!
I had decided while we were up here we would consult with a particular orthopedic surgeon, about Clayton's scoliosis. You see, before his cancer diagnosis, his kidney was stable and the only serious health concern we seemed to have was his scoliosis. We had spoke with two doctors in Mobile over the past couple of years and went with the one we liked and decided a little after his 4th birthday we would do surgery to place a grow rod. It is a rod that is placed to keep his scoliosis from getting worse and it is extended in an outpatient procedure every six months to not only keep up with his growing body, but to correct his curve as well. The rod would stay in place and be extended routinely until Clayton stops growing- that could be 14 years or even a little more.
Then of course he got diagnosed with cancer. That was all we focused on for months. However, the scoliosis was never far from my mind, because if it isn't corrected and it gets worse, it can cause some severe health problems of its own. As of last September, the curvature measured at 47 degrees. The x-ray taken today was not good- because Clayton was not cooperative- but from what the doctor saw, he said it looked like it was now a 60 to 70 degree curve.
Are you flipping kidding me!!!!! It isn't enough that the kid has spent the last 8 months fighting cancer, but his scoliosis had to get worse in the process. I want to scream at the top of my lungs right now. I mean really really SCREAM. I don't want to hear that God has a plan. No. I don't want to hear everything happens for a reason. The only thing that makes any sense to me right now is that this just sucks. It all just sucks. I haven't lost faith, but it is definitely being tested. You see for the past 3 years, I prayed every single night for Clayton's health. Do you know how it feels to be denied the one thing you pray for every night, the most important thing in your world? It sucks! It sucks for me, it sucks for George and it mostly sucks for Clayton.
I know I'm not alone. I know there are other families who have comparable experiences with their children and I know it sucks just as much for them as it does for us. In some cases, even more. I would never wish any of what we've been through on another family, never. At the same time, it is hard to see healthy kids and wonder why your child was chosen for this hell. Especially when your child wasn't chosen to fight just one battle, but so so many.
What makes all of this sooooo bad right now is that as soon as we get over one hurdle it's like, "oops, here's another". Seriously, it has been like this since I was pregnant. Yes we've had "healthy" times, but there always seemed to be something looming in our future. Throughout it all, George and I have tried to stay positive and optimistic, but that is definitely wavering these past couple of months. It just seems like we can't see the light at the end of the tunnel through all the piles of crap. I desperately hope that we can bring some closure to most of our cancer treatment and not have quite so much to worry about; and God forbid maybe have a little fun. But now, in the midst of everything, it just felt like an enormous slap in the face to hear the doctor report the scoliosis had gotten worse yesterday. So unfair to Clayton. How can so much be expected of a three year old?
Anyhow, after talking with the orthopedic surgeon here, we know we will want to use a doctor closer to home in case of any urgent needs with the rod. We are not interested in going back to USACW because we are not comfortable with Clayton's care there at this time. Therefore, the doctor here will be making a recommendation for the best place to do it close to home. It would still be a little after his 4th birthday (11-05), I believe, before we would do the surgery. So, I think we are going to see if we can take Clayton on a Make-a-Wish trip to Disney World before we do the grow rod. Meanwhile back here in NYC, the procedure to remove the nephrostomy tube and have the stint placed will be Thursday at 9:30. From there, I think we might be able to come home for a week. However, this process has taught George and I not to count on anything until it happens.

**I'm sorry this and some other posts are not more positive, but their real. Our life isn't some happy bundle of flowers or something. It is real and lately it is full of more pain than normal and I am the not the kind of person that (when writing about things) is going to sugar coat our reality. People read the blog for different reasons and I write for different reasons. One reason I write is so that I don't have to feel like some things are just bundled inside, because that can drive a person crazy. I am not the kind of person that will talk to people about the way I feel, so this blog is the closest to that that I am going to get, but it is therapeutic for me all the same. So I'm going to write what's real and I do hope that isn't disappointing to anyone when the reality is a little bitter. I know that it is helpful to me to get out frustrations here that I will not talk to people about.**

June 17, 2012

June 18, 2012

I've been avoiding posting, because once again I'm not sure what to tell anyone about the plan. Friday we went back to the hospital to check in with the surgical team to be sure they were still comfortable with Clayton's progress. We had the added surprise of seeing Dr. La Quaglia on his first day back in town. For now, everything is fine, nothing has gotten worse, so we just have to wait for it to get better (talking about the bleeding from his bladder). From there, the plan is to remove the nephrostomy tube this week and place a stint in is ureter. Hopefully we'll find out when today. Then about 4 pm on Friday, I got a call from the neuroblastoma team letting me know that the 3f8 has been pushed back to July 2nd because they want to be sure his kidney is stable before starting the treatment. I don't even know where to start. On the one hand I am happy that they are working so hard to protect his kidney, but on the other hand I hate the idea of prolonging the 3f8 and the antibody treatment because I don't want the cancer to stand any chance of regenerating in the absence of some kind of maintenance treatment. Then, I remind myself that these doctors are the experts in neuroblastoma and live for this disease and their ultimate goal is to keep Clayton cancer free, so they are not going to prolong anything if they are concerned about the presence of cancer activity. That said, right now 3f8 and radiation won't be until the first two weeks in July. So this week we have to take care of the nephrostomy tube and that would hopefully leave us with a free week next week. If that happens then we will come home maybe from a Saturday to Saturday or something- that would be the week of the 25th. Right now we just don't know.
What I do know is that Friday was a huge turning point for Clayton. Friday marked just over a week that we have been outpatient and he had been slowly starting to walk again in that time. Friday though his legs, his personality, old habits, it all just came rushing back. I went almost two months without seeing my child walk, so that was pretty crazy to really see him get his groove back. It's sad how easy it is to forget certain things. We had a good weekend though. We went for walks in the park Friday and Saturday and had a nice quiet day on Sunday. Now we just wait to see what the plan is...

The first week, he kept retreating into his "man cave", but now he's coming out of his shell.

June 15, 2012

June 13th & 14th, 2012

So Wednesday Clayton and I ended up taking a three hour walk. The weather never got pretty, but we walked anyway. At one point we kind of got trapped on a path circling the biggest lake of Central Park. The way the path was, once you got on, there weren't a lot of exits that were stroller friendly. So we just kept going; even when it started to mist, we just had to keep going. We were likely to reach a shelter, if needed, just as fast going around the lake as we would have trying to exit the path and search one out. Not knowing what the weather was going to do, there was a point where I was scared the mist was about to turn into a heavy shower, so I started to jog. This seemed to amuse Clayton. Maybe he liked going fast, or maybe he just thought his mom looked like an idiot running in the rain, either way it was nice to see him laugh. Then right before we made it around, this one jogger passed us and as he did so said, "This path is for joggers only, strollers aren't allowed." Really? You really want to pick on the bald kid and his mom? I am not from there and had no idea, but we were taking up less than three feet of a path at least ten feet wide. And there was no one else around us. All I can say is I'm a little feisty these days so it is a good thing he kept on running because even as he did so I hollered after him to "bite me". Anyway, once we made it around the lake, we preceded to take a nice leisurely stroll through the park back in the direction of the RMH. Then we found ourselves in what is known as the Ramble. If you like to watch birds or want to pretend your hiking somewhere cool and that you don't live in a concrete jungle, then the Ramble is for you. HOWEVER, if you are in a hurry or have to pee or have seen a few to many episodes of Law & Order SVU and are by yourself, then the ramble is definitely not for you. Go. Around. Don't get me wrong though, we enjoyed ourselves overall. It is probably good for me to get lost when I'm trying to exercise. It means I can't make excuses and head for home. Because I don't know where that is! I kid. Well, a little.
You have to forgive me, it is 1:30 am on what is now Friday morning, so I'm not sure how much sense this will make later.
Anyway, we collected Clayton's urine over a 24 hour period from Wenesday to Thursday and took it back to the hospital Thursday afternoon. Hopefully that will give them what they need. Thursday was a quiet day. We took about a hour and a half walk. We went to Central Park again, but from a different direction than before and yet I ended up in that dang Ramble area again! Somebody needs to tell them its in the way.
Clayton is doing good though. He will get up on is own from time to time, but I am still having to encourage him to walk around a bit. Whenever he is walking though he gets so tickled with himself. His counts were all good when they were checked earlier in the week and he is continuing to have only minimal bleeding from his bladder. Now that you've read my narrative about walking, that's all...

June 13, 2012

June 13, 2012

Did I call it or what... I already had a call this morning for us to come in and get supplies to repeat a 24 hour urine collection because the previous one had an issue. Thankfully we don't have to stay in the hospital, we can do this from the RMH. It is like I said though, you can't count on anything from one day to the next; you just never know when something will pop up. This is no big deal though. They are just being thorough. Which we are very thankful for. Thank you God for leading us to doctors who are control freaks. They want things done right and I LOVE it!

Oh and the issue with the results might just be dietary. No reason to worry. There are certain things he is not suppose to eat during the test that might have skewed the results the first time. We are going to have to keep a watch on his diet though in the future because we know that neuroblastoma likes sugar a lot, but isn't so crazy about orange juice and vitamin C. He might have to lay off the Apple Jacks a little.

June 12, 2012

June 12, 2012

Tomorrow is going to be a better day. A serious lack of sleep last night followed by a very early morning and a rainy day, caused for a blah day all around. Clayton and I had to get up early this morning to head to the hospital and do his RT (radiation therapy) simulation. They sedated him and designed exactly how they would lay him out for the radiation and then made a mold of his body so that during each of the 14 sessions of radiation, he will be in the exact same position. The radiation will be twice a day over 7 days.
Anyway, that was our day and while Clayton greatly appreciates not having to starve for hours while he waits to be sedated, he also does not seem to be a fan of being woken up, rushed off to the hospital just to be knocked out. Maybe it will be sunny tomorrow...even if it's not, at least he's not restless tonight and there aren't any standing plans for a hospital visit tomorrow.
I think one of the hardest things about all of this is that you have to be prepared at any given moment to jump up and go to the hospital. Seriously, up here they have a tendency to give you just an hour's notice about things. And as irritating as that might be you don't dare complain because they are the best and they are getting stuff done quickly. You just have to accept that on any given day you could wake up and get a phone call about an unexpected appointment or procedure they want.
It's kind of the same way with being up here so long or being stuck in a hospital so long. On the one hand I would love to whine or complain about it, but on the other hand I want to kick myself for feeling that way, because what right do I have to complain when there are families here from Greece and Britain and other places around the world who haven't seen their home in months. Our room at RMH seems to be on the same floor as some long-term occupants, so it puts things in perspective.
Anyhow, tomorrow will be more cheerful...and hopefully less rainy. We are going to get up on the right side of the bed and go do some exploring if possible. Right now we don't have a scheduled visit to the hospital so I am going to try and take advantage of a day of freedom. We will be doing lots and lots of strolling tomorrow. Too much sitting in hospitals, we gotta get out and get moving!

June 11, 2012

June 11, 2012

And then there were two... As I mentioned before, we scratched our previous plan of starting 3f8 today. The neuroblastoma team needs for them to sort through his kidney issue before starting. That means that Dr. La Quaglia needs to remove the nephrostomy tube and put in a stint. Dr. Laquaglia doesn't get back in town until the 15th, so he can't do it sooner than the 18th and even if it somehow could happen, the neuroblastoma team will all be gone to a neuroblastoma research convention that meets once every three years so there is no way we could ever start our 3f8 the week of the 18th. Which means the soonest that we could start 3f8 would be the 25th. We were going to look into doing the radiation before the 3f8 so that we could come home sooner, but they need a week and a half to plan, so the soonest we could do that would also be the 25th. In a nut shell, we are now starting the 3f8 on the 25th and the radiation on the 2nd. So we will be here until at least July 10th.
Which bring us to the, "and then there were two." George and I couldn't stand the idea of us both missing that much work, so he flew back home today and me and Clayton will be wingin' it here just the two of us. George will be back though for the 3f8 and the radiation; we decided a while back, that those were the most important things for him to be here for. We'll be OK though in the mean time. This week we have tests and stuff to get ready for radiation and the next week we will be tackling the nephrostomy tube, so we'll keep busy.

I've got Clayton set up with a little play area in our Ronald McDonald room and of course he has the awesome play room downstairs to keep him busy. We have to keep working on building his strength back up whenever we have down time too. He doesn't have to learn how to walk again mentally, just physically, but it is definitely like he is starting back at the beginning.
Anyway, looks like we will be spending the 4th of July and my birthday here...here's to new experiences!

June 8, 2012

June 8, 2012

My mom left Tuesday and Clayton got discharged on Wednesday, so it has been just me and him for a few days. We hung out at the RMH and went to appointments Thursday and Friday at the hospital. George flew in this afternoon though so Clayton is happy to have his daddy with him again.
All of Clayton's lab work looks good. He still has minimal bleeding from his bladder and the nephrostomy tube is hopefully doing its job. Next week we have to do more scans in order for them to plan for the radiation and we have to do an echo of his heart prior to the 3f8. The 3f8 got pushed back if I haven't mentioned that...? I'll come back tomorrow with more details on our schedule, right now the thought of it is exhausting me and I want a break from thinking about it.
On a happy note, Clayton is working on building his strength back up. This has by far been the sickliest he has looked throughout this process and his poor legs are just skin and bone. He is so precious though; he gets so proud of himself when he walks. Tonight, he was even tackling stairs! That's my boy! It will take some time, but we will get there. He is eating great and enjoying life outside of the hospital.

June 5, 2012


That's right, we heard the words. No Evidence of Disease! It's official. What a day. We got the regular catheter out, found out we'll probably get to be outpatient as of tomorrow and got told Clayton was NED. Woot, Woot!
We still have a long way to go with our treatment, but this was a big step. Everyone knows what's next. And I'll come back tomorrow and update everyone on the game plan for that...

As for Clayton, he seems to be feeling OK. Definitely a little feisty today. His platelets and hemoglobin are all holding strong...Great news. His bladder his still bleeding a little, but the doctors expect that may continue for a bit. They are fine with that as long as there are no clots and his hemoglobin is not affected. The urine cultures they collected out of his nephrostomy tube the other day are all still negative. We will do an ultrasound next week to check on the status of the kidney and the hydronephrosis. We will also be meeting with the radiation team about the plan for that. And last on the agenda will be waiting on Dr. La Quaglia to return from his trip so we can discuss putting a stint in Clayton's ureter. This is not a big deal, he had one when he was a baby as well. A stint is a means of internalizing the nephrostomy tube by keeping his ureter open for adequate urine flow from his kidney to his bladder. That's all for now!

Thanks You...and some BIG news!

I think it was last Wednesday that Zoey's mom and I grabbed a drink from Starbucks and sat in the park behind the hospital for a bit. One of the things that came up was that I've realized that despite being so thankful for so many things and knowing how much I should express that and not take things for granted, I still get caught up in life and let things that should be done or said pass me by. There are times that I should stop what I'm doing and play on the floor with Clayton, but I don't because there is "so much to do" or "I'm tired and just want to sit and do nothing". I hate that I do that. There are also so many people who George and I either don't get the chance to thank or don't thank as often as we should or something. It is just so easy to get caught up in the logistics of everything. That said...

To all of those who have expressed such an outpouring of love and support,

George and I (still) continue to be humbled and amazed by the support system in which we have found ourselves. The kindness of friends and strangers has been completely overwhelming these past few months. So, whether you're a friend or a stranger, we hope this message reaches everyone.
We are so lucky, so blessed, and so fortunate to have the most amazing people loving and supporting us. We love to read everyone's messages and even though we may not always respond, at the end of every day, George and I are able to find comfort in those messages. Each act of kindness, whether for helping put together a fundraiser or looking after our cat or cooking dinner or mowing our lawn or trying to clean our house; nothing has gone unnoticed and nothing is without our deepest appreciation. I have not had the opportunity to write everyone individually and wouldn't even know everyone to write, but we thank you from the bottom of our hearts. Everyone's prayers, encouragement, and support give us the daily strength and courage to fight this fight.

To a rather large and amazing family at the City of Fairhope: We love y'all. All of y'all, from each and every department. We have not had the pleasure of meeting many of you, but George and I can say and mean from the bottom of our hearts that our lives are better with y'all in it.

Thank you to everyone who has supported us and prayed for Clayton these past few months. We want all of you to know that Clayton was officially declared NED today!!!

We still have some difficult treatment ahead, but what lies ahead will be very different then what we have just left behind. We are so excited to being moving forward.

June 4, 2012

We went to bed Sunday night and we were the only ones in the POU. We woke up Monday morning to a new neighbor and the idea of being moved to the main pediatric floor...So here we are now on the main floor.
We noticed Clayton had a little mucus sounding stuff in his nose or throat and so they tested him for rhinovirus (common cold) and sure enough, he has it. It's not so bad though. It is not something that will keep us here in the hospital at all and it means we don't have to share a room with anyone. Score! He doesn't seem bothered by it at all. It is a very mild cold. No severe or dramatic symptoms.
They also decided to shut off his continuous irrigation through his catheter today, so we'll see how that goes. Hopefully everything is adding unto them pulling out the catheter, clamping the super pubic catheter and us getting to be outpatient!

And I am feeling better too. I had a sinus infection that was pretty rough for a few days, but things are much better now.

June 3, 2012

June 3, 2012

There wasn't much to report yesterday. Things were quiet which was good. The biggest problem we had was him being backed up. That has now resolved itself though. Today Clayton is in the best mood he's been in since we got up here. His hemoglobin is also holding strong at 10. something despite small amounts of blood coming from his continuous irrigation tube. Dr. La Quaglia's fellow, Emily (who we love, she is fantastic), said that we can expect to continue to have some light bleeding, but nothing like before. That could continue for a couple of months. The important thing is that it is not significant bleeding like before and it is not affecting his hemoglobin. Also, his nephrostomy tube will be draining the majority of his urine, so that will also allow his bladder more time to heal. There is a very small amount of blood that can be seen coming from his nephrostomy tube, but surgery is aware of it and they are all keeping an eye on it. Nothing bad to report, but nothing really new either. I am hopeful that we might can lose the catheter and clamp off the super pubic catheter by Tuesday and if all else looks good, maybe we can be out patient at RMH for a few days before starting 3f8.

June 2, 2012

I hope this month is the end to what I keep calling the first chapter of this process. Even though we will be starting our 3f8 and doing our radiation, Clayton will also be spending this month recovering from the hemorrhagic cystitis caused by chemo...and the hydronephrosis that stemmed from that. It seems like he will have to keep the nephrostomy tube for a little while and then to be safe they will internalize it by removing the exterior tube and placing a stint in his ureter. However, they cannot do that until his bladder recovers from the hemorrhagic cystitis. None of this however should delay our 3f8 or radiation.
The 11th is not so quietly sneaking up on us. It will be here before we know it. I did find out that we will be in patient for the first two rounds of 3f8 for two reasons. First, because the first two rounds will be high dose. And second, because they found that they can better manage any residual pain in patient. They did not use to do it in patient, but now they do. We would rather be out patient, but we can't argue with better pain management. We are still hoping that Clayton will not experience any residual pain.
As for the stem cell transplant that we chose to forgo, I have learned that it would have been a HUGE problem for the already problematic hemorrhagic cystitis. Some of the chemo Clayton got kicked his butt so much that he got the severe hemorrhagic cystitis that often times is seen in kids who have undergone a stem cell transplant or radiation to the bladder. I cannot imagine how bad it might have gotten if we did the stem cell transplant. Hopefully his sensitivity to the chemo is an indicator of the sensitivity of any neuroblastoma cells in his body to the chemo.

**For those of you wondering about the stem cell transplant verses other methods of treatment, I'll tell you what they told us here, which has been the best explanation. First off, they refer to it as a stem cell rescue. Chemo knocks Clayton's bone marrow/counts out to a point where it needs time to recover. The recovery time slows as chemo progresses and his bone marrow gets lazy. Some chemos also affect his counts more dramatically than others. This is where the number one difference between typical chemo and a stem cell transplant comes in; a person's bone marrow can recover from normal chemo while a stem cell transplant/rescue destroys bone marrow to the point it cannot recover. Therefore they "rescue" it with previously collected stem cells.

I have also had people ask what the point of the different treatments are so here you go:
Chemo is to kill as much of the tumor as possible and hopefully eliminate cancer cells in the bone marrow. It targets all cells reachable by blood vessels.
Surgery is to remove the main tumor mass.
Stem cell rescues are to completely destroy the body's bone marrow in an effort to rid the body of any "hidden" cancer cells once a patient is in remission. We of course are trying to preserve Clayton's quality of life as much as possible and so we are not doing this unless it becomes absolutely necessary if he were to relapse.
Radiation is specifically targeted to further obliterate any surviving cancer cells at the site of the primary tumor or any area most prone to relapse.
Acutane is taken for 6 months after induction treatment as maintenance therapy specifically for neuroblastoma. It encourages neuroblastoma cells (immature nerve cells) to mature and stop dividing.
3f8 is maintenance therapy used to train the body's cells to seek out and destroy neuroblastoma cells. It of course specifically targets neuroblastoma cells. This is done either when a patient is in remission or has minimal traces left.**

Hope that helps those of you who had some questions.

June 1, 2012

Update- Kidney Situation...

It was a quick procedure. An hour and fifteen minutes from the time I left him and he was back in the room. They had to put him under with propofol and since he had eaten within two hours of sedating him they intubated him for the procedure to help protect against aspiration. He is now back in the POU and drinking again and has a new drain tube draining retained fluid from his kidney.
So the situation is both urgent and scary and not at the same time. I'll explain. The renal scan revealed that his kidney is retaining too much fluid causing the hydronephrosis. In other words there is fluid sitting on his kidney. Fluid that otherwise should be passing through his ureter into his bladder. Right now it is not affecting his kidney function, but with that amount of hydronephrosis, it could begin to affect its function at any time. We do not want that! It is vital that we protect this kidney! VERY IMPORTANT. The doctors here get that and that is why in just a little over twenty four hours after getting an idea about the situation they had a renal scan done, looked at the results and had a last minute -"emergency"- procedure completed. So the idea of the damage the fluid sitting on his could could do if not attended to efficiently is very very frightening. However, right now his kidney function has remained good so that is encouraging. Also the urgency used by these doctors in this situation alone is so comforting. Pray that this resolves the situation. This poor baby does not need any more tubes or anesthesia or anything else.

MSKCC is a pretty well oiled machine - with a personal approach. There have been so many things going on just since we've been up here, that normally would have had me stressing out like mad. Instead, I have just been reassured of the outstanding care being given to my child here. The doctors and nurses at this hospital have made a hard, stressful, nerve-racking situation a smooth process in which I have the utmost confidence in my child's care and do not feel the need to worry quite as much; because they are THAT good. Now of course I still stay on top of things, they just make it easier. I think even my mother has been impressed not only with the efficiency, but with the level of care this hospital provides their patients. It makes ALL the difference in the world. I'm going to sound like a commercial for a minute, but if you or someone you love is ever diagnosed with cancer, consult with this hospital. They are amazing! Not only are they that awesome, but I have learned that it is always worth while to go the extra mile (literally) to have the person you love treated at a hospital that specializes.
Now that the infomercial is over...

So to sum it up, tonight's procedure was urgent and was an "emergency", but it was not the kind of "emergency" that meant Clayton was in critical condition in that moment. So while his life/quality of life was not threatened in the moment they rushed him to the procedure, they did so because it was the type of situation that could cause permanent damage to his only kidney. They acted quickly to avoid a potential disaster and I am so grateful for that. I'll add, that this problem was not caused by his surgery Tuesday or by his tumor resection.
I really hope all these things will get my baby back to normal so he can be the awesome little boy he is!

June 1, 2012

Ok. Real quick update. Crazy day!
I am sick as a dog which is making things more hectic than normal. So that stinks. Especially because I am wearing a mask to avoid spreading germs and so Clayton is scared of me in the mask. He thinks I am going to do something to him because the nurses and doctors wear masks when they do stuff. :(
On the up side, it had been confirmed that Clayton's MIBG which highlights neuroblastoma cells in the body looked clean...GREAT NEWS!!! And the MRI of the head showed that there has not been any metastasizing in his head...more good news. Still waiting on the bone marrow next week though before they officially label him as NED.
Now for the bad news. The renal scan did confirm that his kidney is not getting off enough of the fluid so right now at 6:15 pm eastern time, we are waiting on them to take Clayton and do an "emergency" procedure to put a drain in his kidney. They want to do this now while his creatinine and BUN still look good. They don't want anything to get worse before they do this and they know that long term and even short term, this could be a SIGNIFICANT problem. He only has the one functioning kidney and this is the sort of thing that will damage its function over time. The doctors have a suspicion as to the cause of this, but for now I will wait and elaborate on that at another time.
I'll let everyone know how it goes...

Here they are now....

And back into his "man cave" for the ride to the procedure. (He always covers himself up with blankets and pillows, so the nurses starting calling it his "man cave")