May 28, 2013...sorry to post this so late

Never ceases to amaze me how time can get away from you.  One year ago, we were being Medflighted to NYC to get Clayton's hemorrhagic cystitis under control.  It just feels like yesterday.  Thank God it wasn't.

I mentioned that when we got back from NYC, I got sick, but about the time I got over it, Clayton got sick.  The doctor said his turned into an ear infection and he's been on an antibiotic for nearly a week, so we've just been tending to Clayton around our house.  Right now I am awake at 4 a.m. Writing this and listening to him breath.  He had some somewhat questionable breathing noises that scared me.  They might have been nothing, but I gave him his oral steroid and albuterol breathing treatment just in case and I have the nebulizer on standby.  It is the first time I have done that since starting his inhaled steroids in January.  I hope and pray that after his back we have even less reason to worry!

So, about his back...it's less than two weeks away!  It's sneaking up on me.    I promise I will come back and do a tell-all about what we know about the traction.

We also went to Birmingham this past Tuesday and saw his urologist at UAB; it was the first time we've seen him since Clayton got cancer.  We were checking with him about Clayton's urine retention and whether or not he had anything to offer for treating it.  Lastly, we were inquiring about the hydro nephrosis on Clayton's kidney from his last few scans.  The good news is that he is not worried about the hydonephrosis, he said that what he sees on the scans is what he would expect and as long as the function remains fine, he is not worried about it.  The bad news is that he expects that hydonephrosis because of the way Clayton's kidney started out.  As he put it, Clayton's surgery on that kidney as an infant was "buying us time".  I guess George and I had gotten comfortable enough to foolishly think maybe that kidney would last Clayton forever.  

The only unresolved issue to tend to now is the stent in Clayton's ureter.  Now, we have to check with our local urologist for that one, partly because the urologist in Birmingham said he wasn't going to "be the putz that took it out" if our beloved docs in NYC hadn't really wanted it out- our B'ham doc didn't seem to connect that our NYC docs told us to check with our local urologist about the stent. Luckily, our local urologist is friendly with Dr. La Quaglia, so I have the utmost confidence they can figure it out.  But, since we have to leave for Texas soon, who knows when we can get this done!

May 13, 2013

So we made it home Saturday...yay! Thank you God for trees and my backyard and the ability to go to the grocery store without walking through concrete dust or someone's cigarette smoke. I love our hospital, but I will not miss everyday living in the city. I will miss Tasti D Light (best/healthiest frozen yogurt-like stuff ever!). It's sad when the folks there recognize that "your back" each time you go back to the city. I guess it isn't hard for them to remember me since I am probably the only adult who gets vanilla with rainbow sprinkles every time...for myself, not Clayton. What can I say that combo is nostalgic for me.
Anyhow, I started getting sick Saturday and it has been miserable ever since. Thankfully Clayton isn't sick and didn't miss a beat once he got home. He made George live up to his promise to not deny him a trip outside to the swing. Swinging has become his favorite pastime. He brings his shoes to us to let us know what his intentions are and then he marches out the back door usually clutching his iPad and his American flag. Oh yes, my little patriot likes to wave his flag around while he swings.

May 10, 2013

George and I feel like we are done with 3f8, so when MSKCC told us today that the only other treatment Clayton might be eligible for right now was Hu3f8 (humanized 3f8- think of it as the humane version), we weren't sold. Like all hospitals, MSKCC has different trials that each have their own eligibility requirements and sometimes only accept a limited number of children. We would love to have the "neuroblastoma vaccine" they are testing, but a child must be in their second remission to be eligible for that trial and even then, only 15 kids can be on it. That said, George and I have made peace with our time and treatment here in NYC and I think we are ready to move on. We love MSKCC, we support them, we believe in them and if Clayton ever relapses, we will come straight here. But for now, we need something they cannot offer anymore. Maintenance treatment.
For that we are looking towards the Neuroblastoma and Medulloblastoma Transitional Research Consortium (NMTRC). They are another ground breaking group of researchers headquartered in Grand Rapids, MI. Yes, Michigan. They have a trial for a drug known as DFMO. The purpose of this trial is to show that the use of this drug works to prevent relapse. In other words, it is a maintenance program. If we were within 120 days of first being NED, we would have nearly 18 options about where we might want to go for this trial. Since we are beyond that 120 day mark, we are initially limited to Grand Rapids or San Diego. In time, we hope to have more options in terms of location. We are hoping for Charlotte, NC. For those kids past the 120 day mark they don't get to partake in the original trial, rather they take part in what is known as a "compassionate use" program. This is a program for kids who could benefit, but do not meet standard eligibility criteria. Anyhow, this drug is a two year plan and has no significant side effects. We are still researching, but it seems like our best hope moving forward.
I can't lie, I'm ready to be done with NYC. I'm tired of the concrete and the cigarette smoke and concrete dust. I'm tired of the filth. I want trees, I want nature! For a city that tries so hard to be natural and "green", it is the most unnatural place I have ever been in, in my life. There are parts of the city I love, but I don't get to experience those parts and when it comes to the day to day living, my heart and soul are screaming to escape. I want oceans and mountains, rivers and valleys; I want to be able to show my son the world, to show him life. There is nothing in the city I want or need to show him. Like I said, we are ready to move on. Obviously, that's what God intends.
We can't do anything until after his back stuff over the summer, but when it's time for our next scans, we might be headed to Michigan...we'll see.

Excited about new options, excited about possibilities that don't cause pain...and nervous because in one month we start working on his back!

May 9, 2013 **UDATED**

Doing better. We got transferred back to MSKCC last night and got to go back to the Ronald today. I will update more later about what this means for treatment and so forth later.
**updated**
Thank God and thanks to the fast response by the nurse practitioners, 3f8 nurses and PICU pediatrics team from New York Presbyterian for giving Clayton the treatment he needed to recover from the horrible events of Monday! They made all the right choices and not only enabled him to recover fully, but enabled him to recover swiftly as well. After taking him off the ventilator, he did excellent with his breathing the rest of the day Tuesday and we were expecting to be discharged to the Ronald on Wednesday morning. Well, his swelling continued to go down and his breathing continued to be wonderful, but as things usually go, our plans were thwarted. Wednesday morning he woke up, stood up along side the bed and buckled in pain. The next hour Clayton was moaning in pain as he lay in the fetal position. He even managed to work himself up a fever of 104.0. Why? Severe constipation and gas. Being on the ventilator and from the doctors bagging him, he had A LOT of air pushed into his belly. That combined with not having a bowel movement since Sunday earned us another night in the hospital. It really was bad. They even gave him morphine for the discomfort; along with plenty of meds and treatments to help "get things moving." The good news was that night we were transferred back to MSKCC to stay. So after a few hours of relieving his discomfort by passing gas, Clayton felt good enough to spend the evening in the playroom at MSKCC. By the end of the night, his fever had completely dissipated and he managed to fully relieve his bladder and his bowels. Good times. Lots of cleaning up for me and George. My poor buddy felt so much better though. Anyway, we got to go back to the Ronald this afternoon. All that's left for us here in NYC is to check in with the clinic on Friday and then home on Saturday. Now for the burning question: Because of Clayton's reaction to the 3f8 antibodies on Monday, we will NEVER do 3f8 again. Both a scary thought and a comforting one. We will talk to the team tomorrow and see of they have anything else to offer...
I'm sure some people are wondering why we would be looking to do anything else; after all he is NED. True, but I cannot put into words how aggressive this cancer is. To not do something could mean a death sentence for Clayton down the road. We have to be proactive. Knowing that we can no longer do 3f8 though gives us options. For example, there is a clinical trial for a preventative treatment that is a collaboration of 18 universities and hospitals. If he is eligible, we could have the choice of places like Houston, Austin, St. Louis, Kansas City, Nashville, Charleston, Charlotte or Orlando. There are some other hospitals taking part in this trial in places like Michigan, Connecticut, Arizona and California, but we would obviously try and stay close to home. So our traveling is not over, but we may be done with NYC unless Clayton relapses. I'm not sure. We have a lot of thinking to do and we have to talk to the NB team tomorrow to see if they have something else to offer us. This is the first time since we've come here though that we have even considered any treatment elsewhere. If he ever relapsed though, we would definitely come back here. No doubt about it.
Lots of decisions...

Here is a before and after of his lips from Monday. This after is not even during the peak of his reaction.

May 7, 2013 **corrected**

Successfully extubated! Still swollen, but my sweet buddy is recovering with Mickey. Maybe home tomorrow...

**correction, when I said home, I meant the Ronald**

May 6, 2013 cont...

One year ago today, Clayton finished his final round of high dose chemo. Today, we walked out of MSKCC with Clayton on a stretcher, escorted by the same fellow that saw him on the journey from MSKCC to New York Presbyterian PICU following his April 20th surgery last year.
Something went terribly wrong today...Clayton woke up in a great mood. Playful. Happy. We waited on word from the neuroblastoma team about whether or not to proceed with his 3f8 treatment or not following his mysterious episode Saturday morning. After the report that his EEG showed no signs of seizure, we pressed forward with treatment. Everyone was happy Clayton would be able to have a treatment before starting his therapy for his back. He started his premeds for treatment at 1 p.m.; Tylenol, Pepcid, benedryl, vistral, zophran and one other. He quickly fell asleep after the Benadryl. About 2:45-3:00 we gave him his first dose of dilaudid in preparation for the pain we all knew was coming. The first 15 minutes of the thirty minute infusion, he slept. Then it began. He started thrusting his hips and thrashing around as the pain took over his little body. Almost as soon as the pain hit, his lips swelled up and the hives began. I knew something was wrong immediately because of the extent of the swelling in his lips followed by swelling in his ears...yes, his ears. His ears looked like they had "cauliflower" often seen in boxers and his lips looked like a horrible horrible plastic surgery job gone wrong. To be clear, kids are expected to have an allergic reaction to the antibody; that is why they premed them. However, this was far worse then the normal or otherwise acceptable reaction. The problem was that no one knew what to expect. How long would this reaction last? The doctors were trying to make steps to help Clayton, but they did not know the extent of this reaction. I think at first, we all thought both the allergic reaction and the pain would subside as the infusion wrapped up and we gave him his rescue doses of benadryl, vistral and dilaudid. The pain did not subside so easily, again confirming my belief that something was really wrong.   The pain and the allergic reaction continued into the flush which is a time he should normally be resting.  Each rescue dose of antihistamines seemed to help for literally a minute before he would again swell back up. The main worry was his airway. As he swelled on the outside, we were all quite sure he was swelling inside as well. This was confirmed by his labored breathing, rattling, snoring, etc. His eyes were swollen shut, his lips were at least five times their normal and he was barely holding an O2 stat of 94 on 100% oxygen. We were then able to get a good enough look at his tongue to see it was swollen to the roof of his mouth.
The two 3f8 nurses, the nurse practitioner, Dr. Kushner (our primary oncologist) myself and George all just sat there for a few minutes shocked and trying to figure out how to best proceed. It was hard to know what to do not knowing how persistent this might be. The nurse practioner had a plan of action, but Dr. Kushner wasn't jumping on her plan as eagerly as she wanted, so she called the Peds Attending from New York Presbyterian actoss the street that looks in on the kids in the POU. The attending got there and fell right in with the same plan the nurse practitioner had. At this point we were two hours into the ordeal. They immediately gave him steroids followed a little while later by an epi-pin.  It would take a couple of hours for the steroids to kick in and at least five to ten minutes for the epi-pin.  The only reason he did not get steroids sooner was because they essentially cancel out the 3f8 antibodies and if he had recovered from the reaction they had not wanted to waste the treatment. Everyone was floored that this happened. This dose was not only his 11th dose (third cycle), but it was only a quarter of the dose that he got with the first two cycles. The fact that he did so well with those and then had this reaction stumped everybody. His reaction to the first two cycles were no where near this.

Anyway, it was around this time George directed me to turn around and I saw Marianne.  Marianne is a fellow from New York Presbyterian.  She is the same one that walked us across the street after his tumor resection and successfully extubated him last year.  She was the peace I needed.  With her and the nurse practitioner Dee looking over Clayton I felt much safer.  Much more at peace.  Dee was like the mama bear to the rescue and Marianne was that peaceful voice saying, "it will be OK.  We will make sure to take care of him."  

Three hours from the time everything started, it was time to talk about intubating him.  His blood gas was 75; too high.  They gave him some more breathing treatments and rechecked his blood gas; it was 71, normal is around 40.  Still too high.  By now there were at least 15 people in the room.  They were preparing to incubate.  

To shorten the rest of the story, they successfully intubated him and we made our way to the PICU across the street.  He will be over here through the night and hopefully they will extubated him tomorrow.  For now, his body can rest and recover and the machine will do the work for him...

May 6, 2013

So EEG shows no signs of seizures which is awesome. Also EKG was perfect, so it isn't his heart. What happened is still a mystery and we are left to speculate. The doctors did decide to go ahead with treatment though. We are waiting to start now...
Oh and official results still show NED!

On another note, there will be more traveling in our future at least to UAB to see his urologist there and figure out something with his bladder. If his bladder continues to retain urine over the years, it will do permanent damage to his kidney. His only kidney. So we have to figure that out.

Sunday, May Something

I'm not even sure what day it is today and I don't really care because I'm not sure that part of my brain is functioning at the moment. The day and time just don't matter to me. I know hours and minutes. I know that yesterday morning, for thirty minutes I was scared out of my mind. I know it has been 24 hours since Clayton had some unknown episode in a taxi that led to a 911 call and then the hospital. I know we have about 23 hours left on the EEG we are currently doing to look for any seizure activity. I know that we are suppose to start 3f8 in 24 hours. But what day it is just doesn't matter. Knowing the day will not hep me figure out what went wrong. Knowing the day will not prevent these freak things from continuing to happen to us.
Clayton and I got in a cab Saturday morning to run an errand, and a couple minutes in Clayton started coughing. The coughing got worse and then he started yawning, became pale, limp and his eyes started rolling back in his head. I had no idea what was going on as the episode continued to escalade. All of this took place between 73rd on the East Side and 94th on the West Side. We were far from the Ronald or MSKCC and it was only Clayton and I in NYC. The whole thing was unexpected, scary and on top of that I felt very alone. Not knowing what was going on, I called 911 and they came and got us. Whatever happened, Clayton recovered on his own. We first went to the ER at New York Presbyterian and then got to come to MSKCC were we have been in the POU since Saturday night. While Clayton and I waited for George to fly in that night, Clayton's Uncle Mickey came over from Brooklyn to keep us company.
It is crazy the number of mysteries that surround my child. We have no idea if what happened was a seizure or something as simple as him fainting. Had we not just finished doing all of our cancer screening, that would have been the first thing on their list. Instead, we have done an EKG, which was perfect and an EEG, which we are waiting on the results of. Now we wait to see if treatment is still on this week...

Sorry for the lack of detail...I'm too tired to care today.

May 3, 2013

I love this place. I love how the staff is so good with the kids and I love how brilliant the doctors are. I love them so much that even when there are screw ups I can put it in perspective because their overall care is so wonderful. For example his morning, there was a mix up with the time of our MIBG and so they had us here two hours earlier than we needed to be here; not fun, but they are too wonderful for me to get mad about that. I understand how much they have to juggle and I clearly see how well they work with what they have. I love that when they see a parent struggling with a fussy kid they pitch in offering toys and visits to the fish tank or just conversation for the kiddo in question. I love that when they see you out and about in the city they smile, say hello and ask how your doing. I love that they aren't afraid to put on a silly pair of glasses, or a silly hat or anything they can to get a kid to cheer up. If I had a genie to grant me one wish, it would be for families to have a hospital like this back home. If your kid is sick, the parents and the kids deserve a place as wonderful as this.
On a related note, I also love getting to meet other cancer families. Pediatric cancer is not like adult cancer. It is completely different. Here I get to meet other mothers like me and learn about their experiences and their children's experiences. Today I think I met the fellow-cancer-mom equivalent of my soul mate. Her son is older and has been doing this for 5 years. Sometimes you just really hit it off with somebody... you know? I love the fact that she can tell me stuff like she is glad Dr. Modak was doing the bone marrows, because her son has the least discomfort after Dr. Modak does them. I would never know things like this if it were not for these other moms that have older kids or at least have verbal kids.
Anyway, now that I'm done with my love-fest. Clayton is recovering from bone marrows and sedation now. Maybe this afternoon we will have some results from all of our scans. Wish us luck!

May 2, 2013

I hate waiting for Clayton. Its always the same, I walk back to the room for testing and hold him while they push propofol through his line. I have to be careful to cradle his head because the medication hits quickly and he goes limp. It's the same each time, his eyes roll back in his head, he gives a lazy yawn and then I gently lay him down on the thin table they will use to slide him into the machine. Then I'm left to walk away with an empty stroller. It is a horrible feeling, but a process I have to repeat over and over.
Waiting on him to wake up, then we have a four hour urine collection and MIBG injection at 2. Another full day of screening!

There is a little boy sitting beside me with his mother. He is upset about is impending bone marrows. He asked if the doctors are going to trick him. His mother said no. He then said, "If you lie to me one more time you are going to be in so much trouble!". And follows it a few worries later with, "If they trick me one more time I am going to be so angry!". Then his mom told him, "no finger in your mouth" as he sat there picking his boogers and eating them, and he came back with, "I don't care, its my angry day." These poor kids. It makes me both happy and sad that Clayton can't say these things to me.

May 1, 2013

While we were flying yesterday, Clayton's blood sample was being processed to determine his HAMA status. The verdict: HAMA negative. Finally! This means that we will finally be doing treatment again. This is the first time since October that his little body has allowed us to do so. In August and October we did high dose inpatient 3f8 (antibody) treatment, but this next treatment will be standard dose outpatient treatment. Hopefully that will make it much easier on everyone. I do know that sometimes these treatments can throw you nasty surprises. Hopefully that won't be the purpose of my "bad feeling" leading up to this trip.
Anyway, we scored one of the new rooms at the Ronald which has been awesome! We have also gotten to bump into some of my favorite babies like Miss Lily...Love her! They are from England and she has a twin sister. They are precious. Her and Clayton had back to back CTs yesterday so Lily's mom and I got to catch up which was nice. The weather is also absolutely beautiful! George is coming up this Saturday and I see some walks in the park in our future. The only negative that their allergy season is in full swing. But what would a trip to NYC be without adding an extra week and getting sick?
Which, brings me back to Clayton's treatment. They can put us on the schedule next week, so that is what we are going to do. I know this interferes with the Angel Auction, but it would cost us a lot of money to come home the week of the auction and them come back the next week. It just makes the most sense to stay. Therefore...we are moving the Angel Auction back a week to Thursday, May 16. I will put that on Facebook later today and I will make flyers with the updated information as well. I do hope the change does not inconvenience anyone.
We also checked in with his pulmonologist and we were happy to report no more respiratory issues since starting his daily breathing treatments. She said he sounded great and we can talk about stopping the treatments in another six months. Otherwise, it is just a slew of medications for the poor baby-man. Two pre-meds for MIBG and with treatment next week we get to throw in a fierce shot that can cause bone pain. Not fun...for anyone.
'Til tomorrow...

April 30, 2013

One year ago, George and I were here in NYC transitioning with Clayton from the PICU at New York Presbyterian to the POU at MSKCC to the normal inpatient floor at MSKCC to undergo his final round of high dose chemo. I remember that round like it was yesterday. It was the toughest round of them all and without a doubt the hardest one for Clayton to recover from...
Now Clayton and I are back for scans . This is the first time in all of our trips that I have not been looking forward to a trip. I just hope that is not a sign of anything. I don't need any subtle intuitive feelings. I need clear cut and dry good or bad or neutral feelings and that's it. And we sure don't need anything going wrong.
Anyway, we made it safely to the city...just waiting on tomorrow...