January 31, 2013

So I've been sick, thought I was getting better, I didn't, so today I finally went to the doc and got a steroid shot. Started kicking in already and I'm happy, happy, happy. Woohoo! Anyway, I am just hoping Clayton doesn't get sick behind me. Still waiting on bone marrow results...otherwise Clayton is doing great.
I was watching Grey's Anatomy tonight and it's an episode people should watch. It struck close to home to me. There is an important lesson: change is necessary. Firstly, standard care sucks and even if it is efficient in the beginning, it is not effective, which completely voids whatever efficiency it was designed for.  When  you or someone you love is going to be treated at a hospital ask them if they practice generalized standards of care or if they tailor treatment to the patient.  It makes all of the difference in the world.  The question is when, how much and what good is change without heart? The "way we've always done it" doesn't always work, but nor do "protocols". It is those excuses that lead us to seek out MSKCC. MSKCC has succeeded in saving many, many lives because they don't settle for those excuses. They treat the person individually and they chose to be innovative. And as a privately funded hospital, they obviously make that approach work for them from a business standpoint as well.
It is those concepts that have put them on top. It's kind of like my uncle. For those of you who know who he is, then you know why my family pays close attention to Apple. Recently there have been reports of Apple's stock falling, but all my mother could say was "I'm not worried, that man is too innovative and too determined to fail". Those two concepts drive the world and they will continue to drive the world for the rest of our lives. One without the other is not successful, it has to be the combination. It is that combination that saves Clayton's life every day. And the thing is that innovation touches everywhere: his back, his kidney, his cancer, his recovery...innovation will determine his life span. God gave me the most beautiful baby in the world, but he needs help from time to time and that help requires innovative doctors and those doctors have to have the determination and drive to develop those techniques.
It's sad when people pick on others and it's sad when they lie to avoid change or to deny the inevitable. And it's just pathetic when you see some one that should be above that behavior disappoint you by telling a lie at the expense of others. It's sad and even though they allow their own insecurities or failures to hurt other people it says a lot more about them than it does about the people they are willing to hurt. I will never again trust that doctor I had that falling out with last year. She denied proven facts and fabricated stories at the expense of my family knowing that the man she was telling them to didn't know any different and it came down to her word against mine at that time. She would rather tarnish my credibility than own up to her own faults. That's a coward. Funny thing is that I have overwhelming proof from the leaders of COG made as far back as 2009 to prove her wrong; I just haven't felt like dealing with it anymore. I know the truth, the people I love know the truth and some of her coworkers know the truth. So she can walk around that hospital smiling all day, I know who the better person is and I can sleep better knowing that. In this case, my willingness to find the best treatment options and not settle for the way things "use to be done" saves Clayton's life. So she can keep pretending to others to be anything she wants, but I know and people can't hide their true colors forever.  I want nothing to do with her and will try to avoid her.
I could be a better person in a lot of ways...a lot, but at least I can truthfully say I try to be as real as possible. I might get shy or reserved or not always know how to talk to people or I might get snappy, but I'm real. I don't pretend to be a Saint when I'm a sinner. I'm flawed and I own it knowing I have plenty of room for improvement every day. I can be a better wife, mother, daughter, sister, granddaughter, friend and co worker. My biggest fault is that I (quite passionately) want the world to be a better place and where things can be done fairly, I think they should be; I am but a young grasshopper and quite naive about these things. The realities of these things are something I learn the hard way all the time. I am most proud that despite any hard lessons I have heart. I have heart and know that no matter what I do in this world, whether it is fighting for my son or building a career, I will not purposely do anyone wrong and if I do someone wrong unintentionally I will try like hell to fix it. I learned a number of lessons the hard way growing up, but they all led me to a point where I could be this person. A person whose core values I could be proud of. A person who needs to work on the every day, but has a good, honest, hard working base to spend the rest of my life building off of. A person who is open to change if it makes me a better person and leads to positive changes around me.
That said one of the people I have to really thank is my mother. She is the one person in the world that I can really tell it like it is, no sugar coating ever. She probably gets the worst of me and yet loves me the most. She has always been there...always. Trust me, even when you tell her to go, she usually stays. And even if I could figure it out without her, she purposely tries to avoid making me have to. She drives me nuts and I drive her crazy, but it works for us (most of the time) - though we do hurt each others feelings or make each other very mad at times. She is a rock. A beautiful rock. I had somebody tell me a story once that she would give their son a ride home from the Exceptional Foundation where she and the wonderful Mr. Ricky Trione work. She would tell them it was on her way and she was happy to do it...it wasn't on her way. This has been just since Clayton's had cancer (in other words possibly the busiest time of her life) and until this person told me that I never knew. I wonder how many more of those stories there are out there? And she is the type of person that will never tell those stories and probably tell me "take that off of there", but I won't. She deserves the praise. She puts on a "happy face" to help care for other people when she's sick, hurt and tired. Anyway, I know my family appreciates her more than they say, my grandparents should be very proud and her grand babies are so lucky to have her. We love you ViVi!



P.S. I am very behind on thank you's and graduation gifts and baby gifts; one of those many flaws that needs my attention. :) I hope to catch up and this was my #1, most important thank you to make, but I do hope to get to thank so many others for their kindness to my family. We are so appreciative to the many wonderful people in our lives. We could not be where we are without y'all!

One more P.S. I came across this picture the other day; it is a testament of how far we have come and y'all have helped us with that. The first picture is the end of July and the second is the drive home from the airport a week ago.

January 27, 2013

We left NYC Friday morning and it was 14 "feels like 1"; we got to Pensacola that afternoon and it was 71 "feels like 71". It's not everyday you travel 70 degrees. We were all glad to be home. I couldn't get to my house quick enough; too much flying for me lately. Figures though we get home and I'll be dang if we aren't getting sick. Definitely me and I think Clayton and George too. As of now, I think it's just a cold.
I'll have to come back and write more later though. Not feeling really great at the moment. Never broken a bone, but I swear I get sick at the drop of a hat! I really did just have a cold back at Christmas. Bring on the cough drops!

January 24, 2013

ALL DONE! Heading home first thing in the morning. We finished all of our tests. Thankfully, today went off without a hitch. However, Clayton has been clearly traumatized by the day before. When he had his Hickman, he was very possessive over his chest and would fuss whenever we took his shirt off, even if we were only changing his shirt. We finally seemed to have gotten him past that and then yesterday happened. Maybe the anxiety will pass quickly this time. One of the best parts of today was a family we met. We were in the playroom at the clinic and met a mother and her 13 year old daughter who has been fighting neuroblastoma for seven years! Her story is incredible. She was diagnosed at age six and is still a warrior which is unbelievably rare; typically the older the child is at diagnosis the worse the prognosis. She has relapsed twice and is on her third remission. Her success is a blessing given that her cancer was amplified with unfavorable histology. For those that don't know, neuroblastoma is either n-myc amplified or not amplified and has either a favorable histology or an unfavorable histology; amplified and unfavorable histology can be bad signs. Clayton is not amplified, but has an unfavorable histology; so good and bad. Anyway, this little girl was amazing...and very interested in Clayton. She asked me questions about him and I asked her questions about treatment. It was so nice to really get to talk to an older kid about stuff because Clayton doesn't talk at all and younger kids are only partially reliable (you don't meet a lot of older kids fighting neuroblastoma). So things I wonder about like, "how sore do you get from bone marrows and for how long?", things Clayton can't tell me, she was able to help me understand and that helps me help Clayton. It was just so nice to meet her because most kids who have been doing this as long as she has are in tough places right now or they have passed. So her story gives me more of a happy and hopeful rather than a scared, but hopeful. Oh, and they are from the New Orleans area. Such a pleasure to meet them. Not that we need it, but they also reaffirmed that we are in the right place. They started at New Orleans Children's then went to CHOP (#1 in the country for many peds cancers and rank at top for neuroblastoma along side MSKCC) and then came to MSKCC. MSKCC is their favorite and like us it is like coming home to them as far as treatment goes. It was interesting because the mom raved about CHOP, but still said she preferred MSKCC. We met another family from Sarasota, FL and that mom said something in a way I had not heard it put before. She was talking about how unhappy she was with her COG (Children's Oncology Group) hospital back home and how much she loved MSKCC. I've always said that private hospitals have more freedom with treatments, but she found a more effective way of putting it. She said that the COG hospitals have a protocols and they lump children into categories and treat by protocols where as MSKCC treats according to the child. So true. COG takes a one size fits all approach and MSKCC tailors and customizes and isn't scared to veer off course of their protocols. Their focus is on doing whatever is necessary to save a child's life ( and preserve the quality of life) and if protocols don't work then they try to find what does. Matthew is a perfect example. They are saving his life by doing what's necessary and not what some stupid handbook tells them they should. Thank God for people who realize that things are not always black and white and that there are times to throw the "rules"/protocols to the wind and forge their own path...a better path, one that makes a difference. I thank God for innovative technologies and innovative doctors. Getting off my soapbox...
We got multiple pieces of news today. First, he is HAMA positive. This means we will not be doing treatment for at least another five weeks and the nurse practitioner sounded as though she suspects it could be a few months before his HAMA levels are ready for treatment. Is this good or bad? Depends. You want your child to be able to do 3f8 because of its proven effectiveness, but you also want your child to eventually become HAMA positive (that is part of its purpose after it "trains" the white cells). Typically HAMA positive would be more welcomed after say six rounds or so. We have at least had two high dose treatments and have a year and a half left to fit in as many standard doses as his body will allow. The doctors do say that being HAMA positive can sometimes be a good sign of an active immune system. So we'll see. We retest again in four weeks. If he stays positive we won't go back to NYC until our nine month scans three months from now.
Second, I got a call from one of the doctors tonight and she said that his CT looked good (kidney, bladder and all) and that the official MIBG results were negative. So thus far, two out of three tests show no evidence of disease; just waiting on those bone marrows! Bone Marrows will probably take a week.
Home tomorrow!

January 23, 2013

Today was rough. We spent the morning making sure Clayton drank his contrast for the CT, and premeding him for his MIBG injection, then we left for the hospital. We got to hang out in the playroom for a bit then headed down for what was suppose to be an easy CT. Clayton was already getting tired and hungry (he was NPO) before the scan , but what happened in the scan was just awful.
We went in like normal; the plan was as usual, I would hold him, they would give him the propofol through his line -just enough to make him fall asleep-, he would get a little upset like normal, then as soon as he closed his eyes and his body went limp I would lay him down on the table. Not this time. He gets anxiety as soon as he sees the machines and so he started whimpering, which slowly turned into thrashing in my arms. Meanwhile the anesthesiologist was trying to hook up his line and give him a dose of propofol. Almost as soon as she started, he went nuts and started grabbing at his port. This is where things got chaotic. I was trying to tell one anesthesiologist that he was trying to grab at his port, he was thrashing and screaming and the other anesthesiologist was slowly pushing more propofol in trying to find the dose that would put him to sleep. I think the one anesthesiologist just thought he was getting more upset from anxiety, meanwhile, I couldn't see why he was trying to grab at his port and I think the other anesthesiologist was trying to figure out what I meant by saying he was grabbing at his port. Was it just anxiety? Was it pain? Etc.
It was pain. The needle they used to access his port somehow came out enough to where the propofol infiltrated and formed almost like a big red blister under his skin. They said it was OK and shouldn't cause any harm though it might sting slightly while the tissue absorbs the propofol. It was all just traumatizing. Traumatizing for me and for Clayton. They had to be able to access him, so they had to take that line out, we had to hold down Clayton while the nurse got another needle to access him then the "blister" made it hard to find the port, so they had to manipulate it a bit...all the while Clayton was screaming and I am not only watching helplessly, but helping to hold him down as well. Again feeling like a traitor. One of the anesthesiologist was super sweet and started singing "The Wheels on The Bus". That seemed to help calm him for a minute here and there. The whole thing was just horrible though. Afterwards, I was shaking and weak because holding Clayton down is no easy task and it is upsetting to see him in pain and not be able to do anything; thankfully they did get him accessed again and so he was able to sleep peacefully.
Later in the afternoon, we had to do the MIBG injection which had me paranoid as well. I watched closely that the nurse had good blood return because I did not want radio active material infiltrating my child in a manner in which it was not intended. Thank goodness that in the middle of all of this Childlife was making pizzas in the playroom for parents and kids do while waiting on Clayton to recover after the CT, I was able to steal a quick bite of lunch. The neuroblastoma Childlife coordinator is really great and she is actually from Tennessee. Childlife programs are so awesome and a wonderful way for individuals or businesses to help out. On Tuesday we had an issue with Clayton's port as well and the line cracked and leaked all over him when we were trying to put him to sleep for his MRI. I didn't have a spare shirt for him, but since so many extra clothes have been donated to Childlife, we were able to run up and find him a shirt.
Clayton also has a problem with his behavior being appropriate given the situation. Kind of like the boy who cried wolf; and his not talking makes it all worse. It makes situations like the CT incident worse. It also makes me freak out like when we are trying to power walk the five blocks to the Ronald in temperatures that "feel" like 7 degrees only to have Clayton start screaming bloody murder (and especially given the day's events) causing me to frantically try and duck into a warm store to check him out only to find he was pissed off because his iPad was no longer connected to the hospital's wifi. Today sucked for some other reasons too and I will post about that over the weekend after we get home. That is a subject I want to save for when George and Clayton and I can all be together again.
Aside from that it was nice to see some of the families I care about, the Ronald and to go to MSKCC, but now it is time to come home! Praying tomorrow passes smoothly and test results will be good. There are some intervals that it seems many kids relapse, so those scans will keep me nervous; 3, 6, 9, 15 and 18 months seem to be popular relapse points. Obviously I am going to be quite nervous for a while.
Got my grouchy pants on waiting for tomorrow to pass...

January 22, 2013

So the last few days, we traded our modest Ronald McDonald digs for the life of luxury. OK not really. Well kind of. My grandmother flew up and got a hotel room nearby, so we have spent the last couple of nights at the hotel with her. We even got to go downstairs to the hotel's restaurant and eat a good meal. Together, all of us, at one time...crazy. Usually we have to take turns, but Clayton cooperated so that we could all have a meal together. It was nice and the food was the best I have had here in the city.
That's the thing about coming up here, while New York is a very glamorous city with all of the new and exciting and all that jazz, that isn't what we see. The nightlife and the lights are one of the best parts about the city and we are seldom even outside at night much less enjoying the nightlife or taking in the lights. We are always inside the Ronald or in the hospital. If we do get outside at night it is to run around the corner to pick up milk or something. And while the Ronald is amazing, it is not luxurious. The bedding is the same as hospital bedding and sometimes you get lucky and get a room with bath towels from The Company Store that are fluffier than the others, but that is about as luxurious as it gets. Every few months or so they have people volunteer services for quickie manicures or 15 minute massages or something; semi-luxurious I suppose. However, there is no comparison to waking up in the warmth of a Marriott bed where you are surrounded by down everything. So soft. Clayton looked like an angel in a cotton ball sleeping this morning. Getting to stay in an actual hotel room has been a bit of a treat.
Our New York is very different from other people's New York though. Most people bring their best clothes and most fashionable accessories and book broadway shows and so on...I know because I have been there and done that when I've traveled to the city with my mom and grandparents in the past. I see pictures across Facebook where many others are still doing that same thing. In addition, I have one friend from years past who is up here attending school, another who works for GQ and another who was a Rockette and they, like all of those that visit the city, see a very different city than I see. I see a city that is filthy and full of germs because for us, every germ counts. I see children at every stage of hair loss and regrowth. I see a little girl in pink UGGs with bows down the back, screaming to her daddy, "no more needles, no needles, please no needles". I see a little girl on a scooter sliding across the playroom as her mother follows behind her with her IV pole and the nurse periodically comes in to check her pump and change out one poison for another. I see a little girl full of grace with a pink sparkly bandana wrapped around her otherwise bald head laughing and coloring with a volunteer. I see a 3f8 nurse laughing and playing with one of the children she usually only gets to see bedridden from antibody treatments. I see cancer and pain and love and grace and compassion that most people don't get to see and few places have to offer. There is no glamor or luxury in cancer. Socializing is done through anxiety, exhaustion and tears and sleep is worth more than any night on the town. At the end of the day, everyday, my New York is very different from what most people think of when they think of New York. New York was fun for me when I use to travel here growing up, now it is different. Now, it brings the excitement and the comfort of having a medical team I trust with my whole heart. It brings the feeling of support knowing I am about to once again be surrounded by families who are where we are. I've grown up enough I can now see past the glitz and glam of New York to know I would never want to live here, but for now it brings me a peace I can't get anywhere else. And while usually that peace means a total lack of glamour or luxury, this week my grandfather treated us. A very rare treat indeed! While the weekend was freetime, Monday again brought schedules and tests...
Yesterday and today, we have periodically interrupted our new found luxury for doctors and testing. Today we have been at the hospital since 8 am seeing doctors, doing blood work, getting premeds and such for scans for the rest of the week and doing Clayton's MRI. Test results will be Friday or next week. We should know about his HAMA tomorrow and if he is positive we will retest every four weeks until he is negative. If he stays positive we won't be back here for another three months when we do scans again. So we'll see what the rest of the week brings...

The rest of the week is this:
Wednesday- CT, 4 hour urine collection, HAMA results
Thursday- MIBG, Bone Marrows (these are the big ones)
Friday- Home

January 19, 2013

I'm going stir CRaZY! I am glad to be back at the Ronald to visit and I am glad to be back with our wonderful NB team at MSKCC, but being cooped up avoiding the cold weather and the flu is making me nuts. The weather is too cold to stroll around with Clayton and we aren't going to museums or anything because we don't want him in crowds of people where he is at risk of getting the flu...again. Two reasons: one, last time he had the flu he had a fiberal seizure; two, getting the flu would likely postpone scans yet again. We don't want that!
As for this past week, it wasn't wasted. We did something we needed to do that we could not do at home. It gave us valuable information that the doctors need to help treat Clayton's respiratory episodes and to help us prevent them from occurring in the future. So it was necessary time spent even though it was unexpected. We now will be treating Clayton for asthma and can more confidently say that one doctor's suspicion seems correct that while most kids grow out of croup, Clayton's back could be causing him to grow into it. It was a very important thing to rule out other culprits though. A number of doctors suspected tracheomalaysia because it can be common with certain gene mutations. The day before, one of the doctors at MSKCC was just saying he felt that would probably be what they would find. Meanwhile, our awesome primary Dr. Kushner, commented how "George Clayton Ladd always scares him", but he had two images of him in his head: one where he was running the other way in the clinic to go play and the other where the doctors were scared to death of how 3f8 might affect his breathing and yet he sailed right through it. He said Clayton scared him, but never failed to surprise him. That's my baby-man! I know it might sound weird for a doctor to say a patient scares him, but Clayton is a very complicated child; his medical issues are complex and involve a lot of balancing. Even in the world of pediatric cancer, Clayton is not a typical patient. Thank God for the amazing doctors we have found.
So obviously, we got to see the NB team and got answers to some outstanding questions and we got to see Dr. La Quaglia as well...and we drew blood for HAMA and didn't have to pay to ship it for a change. So we did get stuff accomplished this past week.
Back to Thursday though, things were scary after the procedure, but we made it. Ironically, the procedure that told us what was going on in his airway also irritated it. Therefore, Clayton sounded horse and croup-like all afternoon; which of course meant I was a wreck and worried that it might become so irritated he couldn't breathe. Thank God it didn't. Meanwhile, the weekend is allowing time for Clayton's airway to recoup after the procedure before his sedation for scans this coming week. Fear has had me checking Clayton's stats though every night. We have an O2 stat reader I use and then I check his temperature and be sure to give him his "puffs". I'm trying to get him use to taking his "puffs" every day. I desperately hope this inhaler works as a preventative. I did find some other parents though whose older children suffer from recurrent croup. For these kids their croup episodes are triggered by viral, asthma or allergy related issues. So even though Clayton's immune system is stronger this far put from chemo, because of his resistors health it is critical we guard him against any viral infections. So we are still on germ patrol! These parents also all suggested seeing an allergist to identify any particular allergy that might trigger croup as well as getting rid of carpet in our house (eventually). So lots of tips and things to help us going forward. At least I know we aren't alone dealing with this severe recurrent croup. Sometimes it amazes me though that one child can be given so many challenges; and yet I know there are some children with even more challenges than Clayton. It's hard to think about...

January 17, 2013

It's still early, but we had the bronchoscopy and amazingly they said his airway looks great. No problems. Which is wonderful, but leaves us to assume asthma is the culprit. They were looking for scar tissue from previous intubations or tracheomalaysia. They found neither, which will surprise a few doctors across the street. I got to go in with him wile they put him to sleep. They started by giving him some medication to make him loopy and then they surprised me again by having me help them hold him while they put the tube down his nose while he was still awake (but drugged). Again, I had to be a traitor. They needed to do this though to get a better look at his airway while he was breathing in and out on his own. The ENT did his part and then passed things over to the pulmonologist who did her part. The pulmonologist did multiple things including washed part of his airway with some sterile saline and took some a sample of the build up or film or something in his lower airway to make sure there is no infection. So even though today didn't fix things, we at least now know what it is not and what it probably is; where as before we were just guessing. Knowing this will help us to treat it better in the future. The pulmonologist changed his inhaled steroid from a low dose to a medium dose knowing now that this might all be asthma and wanting to get a leg up trying to prevent it in the future. We will give him two puffs of his inhaler twice a day every day and the idea is that this will work as a preventative for future episodes. She said it will take two to four weeks though for it to do its job as a preventative. So it wouldn't help prevent croup from coming on in a week, but hopefully that won't happen. Of course asthma doesn't cause croup, but you often see them together according to the doctors and the inhaled steroid will treat both. So even though we did not get any definitive answers, we know what it's not and that is important when you have a child that gets sedated as much as Clayton. These are all extremely important things for an anesthesiologist.
The bad news is that this procedure naturally irritates his airway a little, so the rest of the day will be spent being quite paranoid. He is going to sound like he is croupy all day and he will have a cough; all natural from the bronchoscopy. They will discharge us soon and we will probably go spend the day at the clinic across the street if we can just-in-case. That way he can play in the playroom when he wakes, but we will be surrounded by doctors and nurses. I'll let you know how it goes, for now I'm going to go back to staring at his oxygen stats and watching the rise and fall of his chest...

January 16, 2013

Where to start.
It's cold. Very cold...and wet too. I had to get Clayton some gloves tonight so his hands don't freeze walking to and from the hospital. He continues to be happy as he can be which is awesome and I was SO proud of him in clinic today. He was so good while I was talking to the doctor. He sat in their office chair playing with the nurse practitioner and looking at the Wild Things book. No fussing or whining to go out the door or any of the usual which typically makes it hard for me to talk to the doctors. It was so nice. Especially after yesterday.
Let me start from the beginning...
Clayton has a history of croup before cancer and then for the past few months, he has been having respiratory issues; these issues have gotten worse to the point that they landed us in the ER multiple times in December. On one of the ER visits he turned blue in the ER twice in one hour. So for some unexplained reason things obviously got worse; in a very bad, bad way. Our wonderful pediatrician (who by the way came to the ER to check on us) had us go see an ENT a couple of weeks back. To be perfectly honest, it ended up seeming like a useless appointment because the ENT checked his ears, talked to me and said things look OK, I recommend you go see a pulmonologist. So we waited hours to see a man for less than ten minutes who then told us to go see someone else.
Since MSKCC had mentioned a pulmonologist before, we made an appointment up here for this week to see what they could tell us. We met with Dr. Stone yesterday and she was lovely. I mean absolutely wonderful. I think she talked to us for nearly two hours. Literally. She mentioned a bunch of maybe's, but we left her office with a low dose steroid inhaler prescription, her word to talk to the doctors at MSKCC, the idea of investigating further on our next trip, a recommendation to see another ENT and our plans for scans this week still intact. Dr. Stone was obviously concerned, but she seemed to be trying to decide how concerned she was. We left her office at noon and at one we got a phone call that she had made an appointment for us to see their ENT at 3:30. I didn't argue and went with it, anxious to get this respiratory issue resolved. The ENT was very nice, but surprised us by having me sit in the chair, wrap my legs around Clayton's legs and wrap my arms around his arms against his chest, while a nurse held his head and the doctor fed a tube down his nose to get a quick 15 second look at his airway. Oh it was miserable. It makes you feel like such a traitor; and that is coming from some one who has had to hold down their child a lot. Anyway, the doctor said his upper airway looked a little swollen, but not much and that was good news. However, when Dr. Modi (ENT) continued to talk to me and the pulmonologist (who at one point was on speaker phone) and learned of the turning blue episode, he became very stern that he recommend we do not sedate Clayton again until he can do a bronchoscopy. Oh crap. It was 4:00 and he was changing the game plan for the whole week. Dr. Modi and Dr. Stone both rearranged their schedules in order to do the bronchoscopy Thursday...only we didn't know what time. Well when I called MSKCC late Tuesday after meeting with Dr. Modi, they had not heard from him, so they were still expecting us to do the CT Wednesday and expecting that we were premeding Clayton for his MIBG injection for the scan on Thursday. Here is where things get a little (more) complicated:
The ENT said don't sedate him until we do this procedure, but MSKCC had not yet heard that, so they were planning to go ahead with scans for which he has to be sedated.
In order for Clayton to get his MIBG injection on Wednesday, I am suppose to give him a dose of steroids 24 hours and 12 hours before the injection to prevent his allergic reaction. However, the steroids would interfere with the bronchoscopy on Thursday which we would not have confirmation on until late in the day Wednesday. But if I don't premed Clayton, they will reschedule his MIBG no matter what.
And if they have to reschedule his scans for any reason, that means we have to stay up here into next week.
So, lots of little hitches thrown in my giddy up the first day. This is just a glimpse of the chain reaction the last minute ENT appointment spurred. While it is frustrating to balance all of these little things and have a constantly changing schedule and not be able to count on anything, George and I are thrilled to be having this done and to have had these doctors rearrange things to fit this in. It means so much that they put such an emphasis on Clayton's well being. George and I have lost so much sleep this past month or two over Clayton's respiratory issues that hopefully this will bring us some peace. The ENT in mobile mentioned he would not do a bronchoscopy on Clayton in Mobile anyway and would have sent us to Birmingham; so we would have to do this away from home no matter what. We hot as far as giving him his contrast for his CT this morning before the doctors called it off and we finally got confirmation at the end of the day that we will do the procedure at 7:30 Thursday morning. This means they have canceled all of Clayton's scans until the doctors can see what's going on in Clayton's airway. The procedure will involve the ENT scoping the upper airway, followed by the pulmonologist scoping the lower airway. We will do this at New York Presbyterian Hospital across the street from MSKCC.
So Tuesday turned things upside down, Wednesday we were searching for clarity and Thursday hopefully we will get some answers. Waiting to hear what the new schedule for our scans will be...for now just glad to know what's next...or at least what we are doing tomorrow ;)

January 14, 2013

So this will be short and sweet because I will spare telling why I have had a crappy go of things lately and keep it about Clayton. My friend Elissa said a good rule of thumb is to not get so far behind you feel like quitting rather than catching up. Lately I stay behind on my posts don't I? I guess I need to follow that rule better with posting.
Anyhow, Clayton has been doing great. George and are still a wreck over this respiratory stuff, but we see a pulmonologist this week in NYC so hopefully that might help. We have just been amazed (and grateful) at how happy and healthy Clayton seems to be even in the midst of the respiratory issues. That's the thing about this respiratory stuff, is that it seems they are just episodes, but we never know when he might have one of these episodes. That's a big part of what's so scary.
We flew to NYC today for scans this week. We have not been to NYC in three full months, nor have we had scans in three full months...that's crazy given how our summer was. We are here now and I'm excited to be back for a short visit. Our flights weren't too bad. Clayton was amusing during our layover; my travel buddy (aka my mom) was going to try one of his Teddy Grahams and he snatched that bad boy back from her and put it back in his snack pack! Those are his Teddy Grahams. Just funny to see that little personality come out like that. He was so full of it in the room tonight too. Happy, happy, happy; so nice to see him that way. I on the other am finishing this post at 6 am Tuesday morning having not slept much due to paranoia that the weather change or something might trigger a respiratory episode. I'm a bit of a mess about it. Hopefully that will get a little better soon. One reason is we give him steroids with his MIBG so that will help my nerves a bit because those steroids will help protect against a respiratory episode as well. Also because Tuesday we see the pulmonologist. Praying that will bring some relief to this constant fear.
So Tuesday we hit the day clinic to access his port and draw labs for HAMS first thing, then 10 am is the pulmonologist, which will be a few hours and I have to check the schedule again, but maybe we give the first dose of his steroid too. I should sleep better when we do. From there we spend the week doing scans...

January 13, 2013

I will update tomorrow. Clayton is fine, I've just been having a crappy go of it lately.

January 4, 2013

Trying to remember where I left off. Things have been OK. George and I have been scared out of our minds the past couple of weeks. We have been working to figure out Clayton's respiratory issues. Overall, we think that he is having things like the flu or croup that are causing respiratory issues that are then made worse by his scoliosis. However, we have been trying to make sure it isn't anything else either. No scar tissue from intubations or Tracheal Malaysia or anything. We saw an ENT Thursday and he said from his standpoint things looked fine, but that we need to see a pulmonologist who might want to scope his lower airway. So we are trying to set that up for our next NYC visit the week of the 14th. We are also working hard to keep him healthy and away from germs since getting sick still seems to be so detrimental to his health. In the meantime, George and I spend hours watching him sleep. Often afraid every slight cough means the worst. We finally got our best night's sleep in a while on Wednesday night.
Overall though, you would never know that anything was going on by the way he is acting. He is laughing more than ever these days and it is so wonderful for George and I to see. I think after a year we are tired and run down and feeling a bit like our hearts and our nerves can't take much else, so to see Clayton laugh so much is amazing.
We are trying to make some big resolutions though. Inspired by Clayton's health, we are trying to make our lives as organic as possible. I'll share some of those changes soon so if anyone wants to jump on that band wagon with us they can!
Lastly I have been holding on to something for a while...a beautiful little girl named Megan died. She passed away December 19th. There was no media attention or celebrity outrage. She died silently after suffering at the hands of cancer. I have been struggling with a lot of emotions about it and I will come back with more on that another day. For now, may Megan's sweet family find peace and may all the kids out there suffering from cancer be granted some form of comfort. Some escape from the pain. Much love to all of my cancer moms!

Happy new year!

The boys are asleep and as usual I am laying here awake. God, please help us solve Clayton's health problems in 2013. No relapse and correcting his back. Please help us get through...