Catching Clayton: Questions

So here are some questions that we get a lot. Hope these answer some of your questions!
I've updated whats here and will be adding more based on what folks ask me these days...plus the things they might be scared to ask.

GENERAL

Does Clayton talk? Why doesn't he talk? Will he ever talk? He does now. Now being the key word. Before 2016, Clayton only said a handful of words and some words would come and go from one week to the next. Since 2016 his verbal skills have markedly improved and these days he used mostly three word phrases and tries to communicate most things verbally though it can be a challenge to understand him at times. So, he was 6 before we heard much from him. As for the why? He is autistic, nonverbal with Sotos. Beyond that, I can't answer the why. He did speech therapy for just 1 month in 2015 (we couldn't afford it). Beyond that, I have homeschooled him and worked with him.

Does he understand you/me? Can he hear?What does he understand? He understands most things. There is very little you can say to him he would not understand. He knows his ABC's, recognizes some written words and is not horribly behind other his age, he just doesn't talk. There isn't much you can say or ask he will not understand though. He hears GREAT! I will say that though he understands so much, he can get confused. For example, if I ask him to do something while he is distracted he gets flustered and confused or if I ask him to do multiple things at once he can sometimes get confused. Part of that is me though. The more impatient I get, the more confused he gets. Being confused causes him lots of anxiety.

Does he do sign language? No. He communicates effectively in his own way. He knows some signing. Maybe he'll learn more later or maybe he'll talk. Who knows.

How does he act? What about his behavior? His behavior is definitely behind his intellectual level. He still has many of the behaviors of a terrible two year old. However, with that, the sweetest innocence you can imagine has been preserved as well. It makes for a trying combination, but having had illness rob so much of his sweetest years from us, it feels like a gift to get to enjoy it a little longer than most. I have no idea how much he will ever mature. Overall, he is a well-behaved child even when compared to a child without his challenges. We are firm with him and try to enforce rules and that has helped. But it's hard because he's cute. He definitely has moments though that we have not been able to do much about. Example: hitting himself, banging his head against things and even occasionally head butting us. Try as we might we have not made breakthroughs there. 1 to 10 I'd give him a 7. Also sometimes he gets absurdly ~~obsessed~~ persistent about certain things he wants and drives you nuts.

What is the hump on his back? Well for starters it isn't a hump. Its a spinal deformity. Be careful who you use the word hump with. What is though is his scoliosis/kyphosis. You can read more on his scoliosis/kyphosis below.

Is he still getting cancer treatment? Will he ever need more treatment? Do they expect the cancer to come back? No. After his last antibody therapy treatment he went into anaphylactic shock and we have not done active treatment/therapy of any kind since then. He will only need more treatment if his cancer relapses. The longer he is NED, the better his odds of not relapsing, but I don't have numbers for you. Again, the further out from treatment he remains NED the more optimistic the doctors are about his long term prognosis. Unfortunately, with the Sotos Syndrome he is at an increased risk of cancers in the future the doctors have said. Read more on his cancer below.

Local question: Is ___ ___ your uncle? Doesn't he contribute to Clayton's medical fund etc.? Yes, he is my uncle, no he has never contributed to Clayton's medical fund. He has never contributed to Clayton in any way...No, no iPads either. As for why, you'd have to ask him. I omitted the name because if someone is asking, they already know it.

SCOLIOSIS/KYPHOSIS

What is the difference between kyphosis and scoliosis? Scoliosis is the side to side curve. Much like a "S". Kyphosis is the forward curve. It is what causes a hunched back. That said please do not ever refer to someone's child as a hunch back. It's rude. And yes, Clayton has both scoliosis and kyphosis.

Was he born with scoliosis/kyphosis? How did it get so bad? No he was not born with it. His scoliosis began to form around 6 months old. We went from doctor to doctor looking for answers for the two years prior to his cancer diagnosis. Unfortunately, his cancer interrupted our plans and we had to treat the cancer and his back had to wait. This gave his back time to get worse. We tended to his back as soon as we could following his cancer treatment. Then though we did a major corrective surgery in 2013, a secondary curve formed below the corrected section. We are following doctors orders and waiting to do our next surgery.

How bad is his curve? Clayton had a 103 degree curve in his back before surgery. Unfortunately, after his surgery, another curve formed below the original. :act measurement on that curve was 93 degrees.

Does his back hurt him? We assume he has back aches, but he does not seem to be in pain and he does not often express discomfort with things. He can move and grove and climb with the best of them though.

Have you done surgery on his back? Yes. He had a vertebral column resection. They removed one vertebrae and placed a cage using bone grafts from his hip. They then fused the surrounding vertebrae fusing a total of five vertebrae.

Will he have more surgeries on his back? Yes. Eventually they will fuse his entire spine, but he needs to be as old as possible for that to happen. Once they fuse his entire spine, his torso will no longer be able to grow. So for now, his back is getting worse while we wait on him to age. They have to balance his age with the severity of his curve to decide when to do the surgery. Until then, we wait.

What if you go to another doctor, can someone else do more? We won't. We get this question time to time and we want to be as clear as possible while not intending to be rude. We will not go to another doctor. We worked hard to find our doctor. He is an amazingly talented man and med students come from all over the world to study under him and families come from all over the world to be treated by him. We have faith in him and his abilities and we trust him. We also adore our orthopedic hospital and could not imagine going anywhere else. In short, we love the hospital, we love Clayton's orthopedic surgeon, we aren't going anywhere else, and we aren't interested in suggestions. We found the best. Period.

What is the name of your orthopedic hospital/doctor? Texas Scottish Rite Hospital For Children in Dallas, TX. / Dr. Daniel Sucato Chief of Surgery

CANCER

What was Clayton's cancer diagnosis? Stage IV, high-risk Neuroblastoma. The tumor was roughly the size of a small grapefruit. It was located on the adrenal gland of his right kidney (the only one that functions). The tumor crossed over his mid-line, interfering with his major arteries. We also found minimal traces in his bone marrow, his spine and his femur. He underwent aggressive treatment through Memorial Sloan Kettering Cancer Center in NYC. He had 7 rounds of high dose chemo, a tumor resection, 14 rounds of radiation, low dose chemo, and violent antibody therapy.

What is Neuroblastoma? Neuroblastoma is the most common form of cancer in infants (under 2 year). However, it poses a much more severe threat to older children. Roughly 650 kids a year are affected by Neuroblastoma in the U.S. For more information click HERE or HERE.

Were there ever any signs? Kind of. Three months prior to his diagnosis, he began to have some urine retention and so we started visiting his nephrologist and his urologist for answers. Despite tests, the doctors had no answers for us and told us to just keep an eye on it, but that we wouldn't worry to much for now unless it caused a UTI. The day we went to the ER (which led to his hospitalization and then his diagnosis) we went because he had not urinated all day and his belly was hard and severely distended. We later found out that his urine retention could have been a side affect of one of his medications, but it was also a possible symptom of the tumor. We experienced just a few episodes of urine retention during the beginning of his treatment, but no longer seem to have any issues with it. So while we were never given a definitive answer as to the cause of the retention, I am inclined to believe it was a side effect of the tumor. Other than that he exhibited cold/flu-like symptoms that were persistent for 2-4 weeks prior to his diagnosis. We visited the pediatrician twice in that time and did antibiotics twice, but had a hard time knocking out the symptoms. Finally his abdomen did seem a little round but we assumed it was due to his urine retaining bladder, misshapen kidney and the not so uncommon "potbelly" figure some kids have. Because we had seen so many doctors, so much leading up to his diagnosis we never suspected a grapefruit size tumor was in there.

How did he do on chemo? He got two different "chemo cocktails" during treatment. He reacted exactly the same to the first two rounds which were the same drugs. He had some nausea and vomiting, and when his counts dropped during his neutropenic period, he got mucusitis. The third round was a different combination of drugs and caused mostly just nausea, but much more than with the first two rounds. The fourth round was once again the same combination as the first two. This one threw us for a whirl. The nausea and vomiting was worse than ever before. Then during his neutropenic period, he not only got mucusitis, but also the BK virus in his bladder which caused blood in his urine. This round was a turning point in our treatment. His counts stayed low for weeks, which delayed the fifth round nearly a month. Because of this delay, the fifth round, which was the same as the third, was reduced to just half its strength. The reduced strength left Clayton with fewer side effects. Between the fifth and sixth rounds, we made some major changes in our treatment plan, so the sixth and final round was given in NYC, at full strength, and replaced one of the three drugs given for a new (to us) drug. This round kicked his butt. He was sick as a dog similar to after the fourth round. Once again, during his neutropenic period, he got mucusitis. His platelets also dropped to an all-time low (4), causing blood in his vomit, a severe nose bleed and aided in the return of blood in his urine. This time the blood in his urine turned into severe clots and after a bit of a sorted ordeal back home, led us to get surgical intervention in NYC. More than a month out from his final round of chemo, his bladder was still recovering from its hemorrhagic cystitis. It also seemed to trigger some concern with his kidney which we are continuously tending too. The mucusitis and the hemoraghic cystitis were definitely his worst side effects from treatment. He wouldn't eat or drink with the mucusitis and needed ridiculous amounts of transfusions from the hemoraghic cystitis. Lastly, he had to have multiple blood and platelet transfusions after each round of chemo while his counts are low. Mostly platelets. The hemorrhagic cystitis, required more blood and platelet transfusions than would have otherwise been needed.

What do you mean his "counts" were low? We monitored his immune system by his blood counts. One of the numbers we used was his ANC. If his ANC was below 500 then he was neutropenic, meaning he essentially had no immune system and we had to isolate him. If they were 500- 1,000 then he could have visitors at the house that were not sick and had not recently been sick as long as they wore masks. And at 1,000-1,500 we could carefully venture out of the house with him. Above 2,000 is fair game. His white counts were used to calculate his ANC and are a number I used a lot. If his WBC was below 2, he wouldl get sick easy, but if they were below 1, then he started getting the mucusitis. His counts dropped below 1 with the first, second, fourth and sixth rounds of chemo.

Any other significant changes during chemo? After he got mucusitis with the first round of chemo, he stopped drinking milk and for the most part stopped drinking from the sippie cup all together. I'm trying to remember, and I know its in the blog somewhere, but out of the blue, he started drinking again after the third or fourth round of chemo. We kept him hydrated with nightime fluids while he wasn't drinking and since he was still eating a little, we were able to avoid an NG Tube or a G-Tube. We did TPNs(IV nutrition) for a short time after the second round of chemo, but were not appropriately informed about them before hand, so that became an issue with the hospital. We did not want to add the risks of using TPNs long term on top of everything else, so once properly informed, we chose the "use the gut" approach. Thankfully he started drinking again. As a result of everything, his weight fluctuated throughout chemo. He always gained back what he lost very quickly until his surgery. After his surgery, its recovery and then the sixth round of chemo, he was left very frail. And of course his hair started falling out after the first round. More and more came out with each round until the sixth round left him more bald than ever before.

Did y'all thought about St. Jude's? Yes and no. Yes, we did think about an alternative hospital, but no St. Jude's was not for us. They specialize in other types of pediatric cancer. For Neuroblastoma, Memorial Sloan-Kettering Cancer Center in New York City or Children's Hospital of Philidelphia were our best options. We chose MSKCC. Obviously for those who have been reading or know us, we decided we did need more than what USACWH and UAB could offer, so between his fifth round of chemo and his surgery, we sought their help.

So, is he cured? No. There is no cure for neuroblastoma. If treatment is able to rid the body of cancer, then they consider it NED (no evidence of disease). He has achieved that, however, a number of kids that achieve the NED status sadly relapse. That is why we did maintenance treatment until Clayton had an adverse reaction. Neuroblastoma is a VERY AGGRESSIVE form of cancer. We did scans every 3 months until the start of 2015 when the doctors decided it was safe for us to space our scans to every 6 months; in part due to Clayton's sudden onset of post anesthesia reactions. Thus far he has remained NED with an occasional "spot to watch".

What do you mean "maintenance treatment"? For Clayton, we chose treatment with MSKCC which included eight cycles of antibody treatment (3F8) in NYC over the course of two years starting in Fall of 2012. Clayton was able to complete two high dose cycles before going into anaphylactic shock upon starting his third round (first low dose round).

Would you do anything differently? I would go to Memorial Sloan-Kettering from the beginning. I didn't know what it means to get treated somewhere like that in the beginning, but I do now. Thankfully, we made the decision while we still could. Many parents don't find MSKCC until their child has relapsed or it is to late. I was told by the doctors at USACW that we would get the same treatment no matter where we went because of COG protocols and I trusted that. As I discovered that statement was only partially true. We would get some of the same options for treatment at all COG hospitals, however, MSKCC is a private hospital and has the luxury of doing things differently. No one from a COG hospital (in our case USACW or UAB) told us about MSKCC or the possibility of a private hospital in general. Maybe there is a legal issue in that situation, I am not sure, but at the end of the day it is their job to do no harm and save lives, so I don't know why they would not inform a parent of the best treatment options for their child no matter where that treatment is. When it comes to saving a child's life, ego should not be involved. Obviously I hold a grudge about this and would like to get to the bottom of it. If there is a legal issue that prevents doctors from informing parents about ALL of their options, then someone needs to bring attention to that.