Clayton is HAMA positive. It was not news we were expecting even though we knew it was possible. Kind of like finding out he had cancer in the first place. It's a slap in the face. Explaining HAMA (human anti-mouse antibodies) could be lengthy, so I'll try and make it brief. HAMA is when the body develops its own antibodies that then block the 3f8 (mouse) antibodies preventing them from targeting the neuroblastoma cells. Therefore, HAMA positive means we cannot go forward with our next 3f8 treatment the week of September 10th. Instead we will draw his blood again on September 6th and overnight it to them. Then they will call us on the 11th with the results. If he is HAMA negative, then we will do treatment the week of the 17th. If he is HAMA positive, then we will talk with the doctors about our next move. They do have a treatment that can bring a HAMA down if it is really high. We think since they just want to retest Clayton, that his is probably borderline.
It is not the end of the world. He might test negative in a couple weeks and be able to continue with treatments. The important thing, is that the HAMA can recede; so maybe it will and maybe it won't, time will tell. The difficult part is that for stage IV high risk neuroblastoma, chemo alone is not enough. It calls for chemo, radiation and something else. We chose to forgo a stem cell transplant and do this antibody treatment instead as our "something else". Only starting this treatment got delayed and now after just one round he is HAMA positive. It feels like we put all of our eggs in one basket and now we are just watching them fall out one by one. It's scary.
Otherwise, Clayton is doing much better right now. He did miss two days of school this week because of Hurricane Isaac which was a bummer. In the end, Isaac drifted far enough to the west that we just saw some severe thunderstorms and not hurricane conditions. So we lucked out on that one.
I on the other have been better. I have found myself in a funk that seems to be the product of the nasty weather, this unexpected bump with Clayton's treatment and the disgusting political climate floating around my hometown. I am sick to death of the politics and my stress level is already high enough right now that the ridiculousness of it all is driving me crazy. I had been so excited at the thought that it was suppose to be over on August 28th, but then Isaac came along.
"All that is necessary for the triumph of evil is that good men do nothing"
- Edmond Burke
It doesn't matter if your talking about cancer or politics, without the actions and support of good men and women, there cannot be progress.
August 30, 2012
August 28, 2012
August 27, 2012
For our friends in NYC and elsewhere...The wind has been slowly picking up all day and the clouds started rolling in. The rain should start tonight. No idea what this storm will do just yet. This will be Clayton's first hurricane and mine and George's first one as homeowners. Luckily, it isn't coming right at us; we'll get side-swiped. I'll let y'all know how it goes!
...There is so much that cancer has meant we can't do or cant count on. Not to mention our lingering frustration with cancer itself, that it ends up being the little things that sometimes just really throw you off.
Anyway, just waiting on the storm...
...There is so much that cancer has meant we can't do or cant count on. Not to mention our lingering frustration with cancer itself, that it ends up being the little things that sometimes just really throw you off.
Anyway, just waiting on the storm...
August 27, 2012
August 26, 2012
Awesome weekend! I'd say Clayton is 90% back to normal now. Up and moving and smiling and playing. It's was great this weekend. It was one of the first times in a while that I've almost forgotten about cancer...almost forgotten. We made mild hurricane preparations (basically I just made sure we wouldn't starve and would have functioning flashlights) because we don't have a generator so if things ever got bad, we would be headed to our parents' houses. Generators must be one of those things that comes with age. So for now we are curious to see what the storm does, ready for local elections to be over, excited about Clayton's hair growing back and for now, not worrying too much about cancer!
August 23, 2012
August 23, 2012
I drew blood for his HAMA test today and am getting it shipped to NYC. Fingers crossed its negative! If it is, then 3f8 round 2 will start September 10. That will be the last high dose round, which means the last in-patient round. Yay! After that things will really start to get better...and that should mean no more Hickman...real baths again!
So glad to be home but missing some friends from NYC. I hope all of them and their little ones are doing great!
So glad to be home but missing some friends from NYC. I hope all of them and their little ones are doing great!
August 22, 2012
God laughs at me. Yes he does. Every time I attempt to make plans he laughs. Every time I say one day I would... he laughs. You see I have learned you have to be very specific about what you ask for. For example, if your a naive 20 year old, you might ask to one day meet a good man and be lucky enough to live in a nice house in a nice neighborhood (Moore's Mill in Auburn for example), you might then find yourself as a nanny folding laundry with a four year old, in an almost mansion, in a beautiful neighborhood having a "holy cow" moment realizing you got just what you asked for...just not quite the way you meant it. Lesson learned: prayers must be specific.
Then there was the fact that on multiple occasions I use to be certain I didn't want kids. Not any time soon for sure. Instead, I was always making plans to travel and write for National Geographic or become a foreign correspondent or something adventurous. Then there was Clayton. Another lesson learned: Don't make plans...or at least realize they aren't likely to go your way, but that isn't necessarily a bad thing.
Still, I find myself wanting to make plans all the time; plans for grad school, plans for work, plans for vacations. Then I have to reel my thoughts back in; I can't make plans based on the idea that other plans are going to work out. It's like grad schol, the more I planned it, the more I realized that I can't plan to take on student loans not knowing what will happen with Clayton. If I were to ever have to quit and be home with him all the time, our family can't be saddled with those loans. So grad school is still on the horizon and I am still going to do what I need to to get in, but enrolling will have to be contingent on my getting scholarships or grants. Or if I miraculously get rich and can just pay it myself, that would of course be awesome.
Meanwhile, my hiatus from the blog and Facebook has been full of plans. New plans, old ones...plans that never saw the light of day...and some plans that make me very very HAPPY! What are these happy plans? Clayton's back surgery. The plan had been to do a surgery that involved doing an outpatient procedure every six months to extend a rod. Then I found another little boy who had neuroblastoma, beat it and then had severe scoliosis to battle...just like us! Like me, his mother's heart was broken at the thought of putting her child through something every six months after he had already beat cancer. Well, that little boy just had a successful surgery done in New York by one of the best orthopedic surgeons in the world and his back looks AMAZING! And guess what? He doesn't have to go back every six months. The doctor used modified rods, so that little boy only has to look at doing a procedure every two years or so! Totally rocked my world! I can not tell you how happy hearing his story made me. I have already talked to his mother on the phone and Clayton has an appointment set up to see that doctor when we go up for our next round of 3f8; provided he is HAMA negative. I'll post a picture of that little boy's before and after X-rays for everyone to see what I am talking about soon. For now, it is three weeks post op and his mom said he is already running again! I. Am. So. Excited.
So despite giving God a good laugh from time to time, I'm still trying to make plans, but ALL of my plans of course revolve around Clayton. Wouldn't have it any other way. ;) For now though I am so thankful to have finished school before all of this and gotten a job close to home and now close to Clayton at school. Being able to work so close to Clayton all the time is just what we need. Thankfully, those are all things I didn't have to plan, they just kind of fell into place. Funny how that works sometimes?
So yes, Clayton started school this week! I am excited about that one too. It is going to take some adjusting, but I am so happy (and comfortable) with his teachers. Things are going good for the most part. The only complaint is that Clayton is still not 100% himself. Maybe only 75%. We aren't sure why. I will say I don't think he feels bad though. I am pretty confident it is just an attitude or control "thing". We are working on it.
I did notice a flyer at work today that touched on something I have been meaning to mention: bone marrow and blood donations. For ALL of these kids going through cancer, these donations are SO important. Even though people think about blood donations, very few think about becoming bone marrow donors. Becoming a bone marrow donor could save a kids life. It is so so important. If a kid needs a bone marrow donor it can be so hard to find a match. One-in-a-million kind of hard. The more donors, the better their chances of finding a match, so those of you that can, please think about being put on the BM donor registry. I cannot stress just how important that is to some of these kids. I am going to sign up as a donor myself. Anyhow, just something I have been wanting to mention.
I also have all kinds of video of Clayton I have been meaning to post, so I will try and do that soon! In the meantime please keep Matthew Pedrotty in your prayers. The cancer in his bones is stubborn and his parents and the doctors are hoping to find a treatment that yields a positive response!
Then there was the fact that on multiple occasions I use to be certain I didn't want kids. Not any time soon for sure. Instead, I was always making plans to travel and write for National Geographic or become a foreign correspondent or something adventurous. Then there was Clayton. Another lesson learned: Don't make plans...or at least realize they aren't likely to go your way, but that isn't necessarily a bad thing.
Still, I find myself wanting to make plans all the time; plans for grad school, plans for work, plans for vacations. Then I have to reel my thoughts back in; I can't make plans based on the idea that other plans are going to work out. It's like grad schol, the more I planned it, the more I realized that I can't plan to take on student loans not knowing what will happen with Clayton. If I were to ever have to quit and be home with him all the time, our family can't be saddled with those loans. So grad school is still on the horizon and I am still going to do what I need to to get in, but enrolling will have to be contingent on my getting scholarships or grants. Or if I miraculously get rich and can just pay it myself, that would of course be awesome.
Meanwhile, my hiatus from the blog and Facebook has been full of plans. New plans, old ones...plans that never saw the light of day...and some plans that make me very very HAPPY! What are these happy plans? Clayton's back surgery. The plan had been to do a surgery that involved doing an outpatient procedure every six months to extend a rod. Then I found another little boy who had neuroblastoma, beat it and then had severe scoliosis to battle...just like us! Like me, his mother's heart was broken at the thought of putting her child through something every six months after he had already beat cancer. Well, that little boy just had a successful surgery done in New York by one of the best orthopedic surgeons in the world and his back looks AMAZING! And guess what? He doesn't have to go back every six months. The doctor used modified rods, so that little boy only has to look at doing a procedure every two years or so! Totally rocked my world! I can not tell you how happy hearing his story made me. I have already talked to his mother on the phone and Clayton has an appointment set up to see that doctor when we go up for our next round of 3f8; provided he is HAMA negative. I'll post a picture of that little boy's before and after X-rays for everyone to see what I am talking about soon. For now, it is three weeks post op and his mom said he is already running again! I. Am. So. Excited.
So despite giving God a good laugh from time to time, I'm still trying to make plans, but ALL of my plans of course revolve around Clayton. Wouldn't have it any other way. ;) For now though I am so thankful to have finished school before all of this and gotten a job close to home and now close to Clayton at school. Being able to work so close to Clayton all the time is just what we need. Thankfully, those are all things I didn't have to plan, they just kind of fell into place. Funny how that works sometimes?
So yes, Clayton started school this week! I am excited about that one too. It is going to take some adjusting, but I am so happy (and comfortable) with his teachers. Things are going good for the most part. The only complaint is that Clayton is still not 100% himself. Maybe only 75%. We aren't sure why. I will say I don't think he feels bad though. I am pretty confident it is just an attitude or control "thing". We are working on it.
I did notice a flyer at work today that touched on something I have been meaning to mention: bone marrow and blood donations. For ALL of these kids going through cancer, these donations are SO important. Even though people think about blood donations, very few think about becoming bone marrow donors. Becoming a bone marrow donor could save a kids life. It is so so important. If a kid needs a bone marrow donor it can be so hard to find a match. One-in-a-million kind of hard. The more donors, the better their chances of finding a match, so those of you that can, please think about being put on the BM donor registry. I cannot stress just how important that is to some of these kids. I am going to sign up as a donor myself. Anyhow, just something I have been wanting to mention.
I also have all kinds of video of Clayton I have been meaning to post, so I will try and do that soon! In the meantime please keep Matthew Pedrotty in your prayers. The cancer in his bones is stubborn and his parents and the doctors are hoping to find a treatment that yields a positive response!
August 21, 2012
August 20, 2012
Sorry I am behind on a thorough post. For now, today was Clayton's first day of his little preschool program. He did great! Now that he knows though, Wednesday will be the test to see how he acts. I'll try again to get a good post up tomorrow!
...FYI September is CHILDHOOD cancer awareness month!
...FYI September is CHILDHOOD cancer awareness month!
August 17, 2012
August 17, 2012
Still here...we made it home last Sunday and dove straight into the work week. It has been a rough week. We are tired and need to catch up on some rest and are still dealing with Clayton's moodiness. He just hasn't quite gotten back to himself. He is eating and drinking great and is not restless like he was at the beginning of the week, but he is behaving oddly around me and George. Maybe he is just mad at us or maybe it is still just part of the withdrawal from the narcotics. His belly is finally getting back to normal though and that is a good thing.
I'm struggling to keep my eyes open and a little depressed that Clayton still has so many battles left to fight (his back,etc.), so I'll come back tomorrow or Saturday with a thorough post about things.
I'm struggling to keep my eyes open and a little depressed that Clayton still has so many battles left to fight (his back,etc.), so I'll come back tomorrow or Saturday with a thorough post about things.
August 11, 2012
3f8 Day 5...end of cycle 1
So we finished 3f8 on Friday. It was a long week. Clayton continued to do good during the infusion, and we continued to deal with the side effects as they came. Thursday he spike a fever. Not abnormal for this treatment, but they did cultures to be sure. Nothing grew. Friday he spiked a fever again. More cultures. Again nothing grew. Meanwhile, we continued to deal with residual pain and hives during the last two days, but ended up with some other issues. First, his tongue had been swelling for a couple of days from the treatment and it drove him nuts! Then we noticed that starting Friday morning, he wasn't peeing. Urine retention...oh yay...somehow we missed that that can be a temporary side effect of the treatment as well as a side effect from dilaudid. We spoke with the doctor on the floor Friday night about what to do. Let me start by saying that the doctors on the floor are general Peds attendings, not our oncologists. That is an important distinction. This doctor (a fellow) and I had different opinions about courses of action. No confrontation, just different opinions. However, despite my better judgement and my intuition, I agreed to proceed with her suggestion to try lasix. Didn't work. Lasix gets excess fluid off of the body. In other words, it will further fill up his bladder. The thing was, that we knew his bladder was full, we just needed it to empty. Adding more to it just didn't seem smart. Yes, lasix can sometimes trigger the bladder to empty itself, but when your baby's belly is big and hard and you know his bladder is full, sometimes just doesn't cut it. That is why I had felt an in and out catheter was the best course of action. I would NEVER suggest a catheter unless I thought it was necessary. So the nurses come in to do the catheter and George and I are like "Wow, that is a big catheter, isn't there a smaller one?" They said no that was the standard size. No my friends it isn't and George and I knew better and should have been forceful about it. (I assume most of you don't, but for those that know a thing or two about catheters, these night nurses were trying to use a 16 French. That is a BIG catheter.) Instead, they proceed to try and place it, but were unsuccessful because Clayton's body was so tense. So they retreated. The day nurse then comes in (this was all at 6:30 on the morning), we try and figure some things out and a couple hours later we tried it again with an appropriate in and out catheter. Success! We drained 1300 cc's off his poor bladder. I would love to be pissed at the doctor for not acting sooner or at the nurses for not knowing which catheter to use, but George and I knew better and should have stood up for Clayton better. At the same time, those things are their job...
We got Clayton back to the Ronald shortly after that Saturday afternoon. He was far from himself and I just kept hoping he would wake up later a little more like the little boy I know him to be. The last few days were hard because he doesn't talk to us to tell us if or where he hurts. We were fighting constipation, then diarrhea, fevers, then urine retention, a huge belly and only moderate oxygen saturation levels. Everything is a balancing act and there are multiple possible reasons for why he was experiencing each symptom. So trying to figure it out was not fun. Top it off with this newly acquired habit of picking at his top lip and his poor tongue that looked like it had blisters on it from where he would bite it when it was swollen and he was just not in a good place. Oh and then we had to bring him off the narcotics. So I thought being at the Ronald would finally make for a good night's sleep for everyone...wrong! It was a miserable night. We didn't have dilaudid to wean Clayton off (long story) so he was irritable and restless. It was bad...until I remembered I had Ativan; for him not me. ;)
Now that I've given y'all our sporadic tale with so many unnecessary details. I'll tell y'all where we're at... HOME! I'm a little nervous because he isn't himself just yet, but we are home. After we got here Sunday night, he got on his feet for the first time since treatment started. Oh and he had started drinking again on Friday, so that is still going good and he is throwing some food in the mix too. His belly is still big and that always makes me nervous, but it is seeming more and more like a lot of that might be gas. Hopefully that stuff will work itself out in the next couple of days. We are going to try and check in with his pediatrician here real quick in the morning and then hopefully, we won't have anything left to do until September 10th. Crazy! As long as there are no complications, we are free as birds for a few weeks!
We got Clayton back to the Ronald shortly after that Saturday afternoon. He was far from himself and I just kept hoping he would wake up later a little more like the little boy I know him to be. The last few days were hard because he doesn't talk to us to tell us if or where he hurts. We were fighting constipation, then diarrhea, fevers, then urine retention, a huge belly and only moderate oxygen saturation levels. Everything is a balancing act and there are multiple possible reasons for why he was experiencing each symptom. So trying to figure it out was not fun. Top it off with this newly acquired habit of picking at his top lip and his poor tongue that looked like it had blisters on it from where he would bite it when it was swollen and he was just not in a good place. Oh and then we had to bring him off the narcotics. So I thought being at the Ronald would finally make for a good night's sleep for everyone...wrong! It was a miserable night. We didn't have dilaudid to wean Clayton off (long story) so he was irritable and restless. It was bad...until I remembered I had Ativan; for him not me. ;)
Now that I've given y'all our sporadic tale with so many unnecessary details. I'll tell y'all where we're at... HOME! I'm a little nervous because he isn't himself just yet, but we are home. After we got here Sunday night, he got on his feet for the first time since treatment started. Oh and he had started drinking again on Friday, so that is still going good and he is throwing some food in the mix too. His belly is still big and that always makes me nervous, but it is seeming more and more like a lot of that might be gas. Hopefully that stuff will work itself out in the next couple of days. We are going to try and check in with his pediatrician here real quick in the morning and then hopefully, we won't have anything left to do until September 10th. Crazy! As long as there are no complications, we are free as birds for a few weeks!
August 9, 2012
3f8 Day 3 and 4
Clayton
Matthew
Abigail
Justin
Zoey
Lily
Stergios
Liam
Case
Nicholas
Brooklyn
Those are just the neuroblastoma fighters that I have met...or talked with their mothers, etc. The list of neuroblastoma fighters I have just passed by or read about would be much longer...
For every kid out there fighting cancer, you are better than all of us...by miles...there is no competition. Y'all are amazing. Y'all fight this disease with such dignity that the rest of us fail in comparison.
I have sat here this week and watched my son's body be beat up from the inside out in an effort to keep the cancer at bay. He has had hives come and go; at one point they engulfed his left eye. I have watched him lose his will to eat and drink through the sedation and the pain. I have watched him struggle to keep his eyes open just to make sure that George and I are right there with him. I have seem his body writher in pain and watched him be overcome with shivers from explosive fevers brought on by these foreign agents being injected into his body in an effort to keep it cancer free. I have been here for every restless night and miserable morning. Yes, for him, the residual pain has been most miserable in the mornings. I have had to force open the mouth of my already defeated child to give him medicine as he held his breath in defiance. For days, I have sat here and lived by his oxygen saturation levels and heart rate trying to make judgements on what medicines he needs and when. The doctors write orders for you to have any of the possible medicines you need at your disposal and you just have to press the little red button and tell them what you want. The doctors do it this way because they recognize that you know your child best. That of course means you have to be aware of every detail going on. It is a tireless task trying to figure out which combinations work for him. Which ones take away the pain without slowing his breathing too much or causing agitation? How sedated do we try and keep him? We don't want him to be uncomfortable, but we don't want him strung out all the time either.
That has been the hard part about this; the pain during the infusion can be intense, but it is the around the clock residual pain that has been hard to handle for us. I feel like we were very fortunate with Clayton's experience with this so far. He had some very intense pain on day one and two that we worked through, but on days three and four he was able to sleep through the pain during the infusion with the right amount of sedatives. That made for a lot less stress. Even then though you could see his body reacting to the assault on his nerves. He twitches a little bit and his stomach gradually becomes harder as it contracts from the discomfort. We have mostly had a hard and exhausting time battling the residual pain. Lots of restlessness. As for our roommate who had a bad go of things on day one, they were able to slow things down and make it work for him to finish the week. I am so very happy they did to because that poor child has had a very long road of things.
After everything, will it work? God I hope so. There is no guarantee. There never is... I do know that this is the right place and if God forbid I ever lose Clayton to this beast I will not have any regrets about bringing him to these doctors. They are the best and they care. We had the longest talk to date with our primary here Dr. Kushner right before coming home this last time and watching his reaction to Clayton running around the office really cemented in stone for me how right this place is for us. He was so tickled seeing Clayton up and about. Just last night, we were discussing whether we could go home Sunday night or if he wanted us to stay and check on Clayton on Monday and he told George, "He was making him feel guilty, but he'd get over it." all said with a smile of course. However, when the nine month pregnant mother of Clayton's little roommate told him she planned on going home Sunday he came back to us and said it would be OK for us to go home Sunday night and to have our pediatrician check his blood pressure Monday at home as long as everything else went smooth. ;) (Leave it to the pregnant momma to advocate for all of us!) He is just a good man with a corky sense of humor and I feel so lucky to have him looking after my child. Even one of the doctors here that I had heard mixed reviews about grew on me on the first few days of 3f8 as I saw how he acted with the kids and how he really did care. And Dr. La Quaglia is amazing. George and I are so glad we no longer need him (because the surgical side of Clayton's care is over), but we were a little sad about not having him in our lives anymore. I have not met one family that has anything negative to say about that man; everyone calls him "a great man". These men are what doctors should be. They are not perfect, but they know how to check their egos at the door and be great doctors. And the 3f8 nurses? Wonderful. They are so sweet and patient and you can see how much they care for the kids too. I totally get why they do what they do everyday now.
There is so much that goes in in this world of cancer that people will never know. Little things. Like on our last trip home, we had a card from the hospital to give them at the airport saying that Clayton had recently been injected with a radio active substance. Yes, my child was injected with a substance that said hazardous on it and required a card from the hospital to clear airport screening. Crazy huh? Or things like the fact that I have seen outside less than an hour all week- and I literally mean seen, not just been outside, but seen it. Clayton's roommates mom (the one who is 9 months pregnant) is my role model. For someone going through this, she carries herself so well and for a pregnant woman, she is unbelievable. She always seems to have her wits about her...and with a smile too.
Then of course there are the kids. This past week, a 12 year old little girl who has been battling neuroblastoma for a few years now discovered that she has pre leukemia as a result from her cancer treatments. She now has two cancers at once and has therefore decided to give up her fight and try and live her life as best she can with the time she has. This little girl is BEAUTIFUL! And her life is being cut short in such a horrible way, yet she is living the time she has left with a smile on her face. You can check her out here:
http://m.youtube.com/watch?v=1slESfh_3M0
http://m.youtube.com/watch?v=e1SI3V1Ar20
http://m.youtube.com/watch?v=FgiMnABlYdo
It is easy to go home and forget the hardships that you witness or hear about on a daily basis in a place like this, but I don't want to forget. I want to remember. I want to remember every heartbreaking detail to ensure that for the rest of my life I have the drive to fight for something that is real. It isn't enough for me to just exist without a purpose. I don't care if anybody ever knows my name, but when I die I want to die knowing that someone, some child, will benefit because I fought for something meaningful. Because Clayton fought for something. Because I was inspired by my child to be the best that I could be and to do the most that I could do with my life. I have a long way to go to achieve those things, but I have one hell of a driving force.
I hope that a lot of people (particularly politicians right now) can take a page out these children's books and learn to conduct themselves with more dignity and less hate. I will probably get an earful for this, but I am going to say it anyway: I live in this world up here and then I go home and am ashamed of most of the politicians I see. They use their power to further their own agendas and don't hesitate to abuse the lives of others with their selfishness. I am ashamed of y'all. I am ashamed that such ugliness exists in such a beautiful town like mine. I am ashamed that while so much of my life is spent surrounded by kids fighting for their lives, my home is consumed by politicians full of hatred for one another and selfishness. It is a sad sad thing...
Matthew
Abigail
Justin
Zoey
Lily
Stergios
Liam
Case
Nicholas
Brooklyn
Those are just the neuroblastoma fighters that I have met...or talked with their mothers, etc. The list of neuroblastoma fighters I have just passed by or read about would be much longer...
For every kid out there fighting cancer, you are better than all of us...by miles...there is no competition. Y'all are amazing. Y'all fight this disease with such dignity that the rest of us fail in comparison.
I have sat here this week and watched my son's body be beat up from the inside out in an effort to keep the cancer at bay. He has had hives come and go; at one point they engulfed his left eye. I have watched him lose his will to eat and drink through the sedation and the pain. I have watched him struggle to keep his eyes open just to make sure that George and I are right there with him. I have seem his body writher in pain and watched him be overcome with shivers from explosive fevers brought on by these foreign agents being injected into his body in an effort to keep it cancer free. I have been here for every restless night and miserable morning. Yes, for him, the residual pain has been most miserable in the mornings. I have had to force open the mouth of my already defeated child to give him medicine as he held his breath in defiance. For days, I have sat here and lived by his oxygen saturation levels and heart rate trying to make judgements on what medicines he needs and when. The doctors write orders for you to have any of the possible medicines you need at your disposal and you just have to press the little red button and tell them what you want. The doctors do it this way because they recognize that you know your child best. That of course means you have to be aware of every detail going on. It is a tireless task trying to figure out which combinations work for him. Which ones take away the pain without slowing his breathing too much or causing agitation? How sedated do we try and keep him? We don't want him to be uncomfortable, but we don't want him strung out all the time either.
That has been the hard part about this; the pain during the infusion can be intense, but it is the around the clock residual pain that has been hard to handle for us. I feel like we were very fortunate with Clayton's experience with this so far. He had some very intense pain on day one and two that we worked through, but on days three and four he was able to sleep through the pain during the infusion with the right amount of sedatives. That made for a lot less stress. Even then though you could see his body reacting to the assault on his nerves. He twitches a little bit and his stomach gradually becomes harder as it contracts from the discomfort. We have mostly had a hard and exhausting time battling the residual pain. Lots of restlessness. As for our roommate who had a bad go of things on day one, they were able to slow things down and make it work for him to finish the week. I am so very happy they did to because that poor child has had a very long road of things.
After everything, will it work? God I hope so. There is no guarantee. There never is... I do know that this is the right place and if God forbid I ever lose Clayton to this beast I will not have any regrets about bringing him to these doctors. They are the best and they care. We had the longest talk to date with our primary here Dr. Kushner right before coming home this last time and watching his reaction to Clayton running around the office really cemented in stone for me how right this place is for us. He was so tickled seeing Clayton up and about. Just last night, we were discussing whether we could go home Sunday night or if he wanted us to stay and check on Clayton on Monday and he told George, "He was making him feel guilty, but he'd get over it." all said with a smile of course. However, when the nine month pregnant mother of Clayton's little roommate told him she planned on going home Sunday he came back to us and said it would be OK for us to go home Sunday night and to have our pediatrician check his blood pressure Monday at home as long as everything else went smooth. ;) (Leave it to the pregnant momma to advocate for all of us!) He is just a good man with a corky sense of humor and I feel so lucky to have him looking after my child. Even one of the doctors here that I had heard mixed reviews about grew on me on the first few days of 3f8 as I saw how he acted with the kids and how he really did care. And Dr. La Quaglia is amazing. George and I are so glad we no longer need him (because the surgical side of Clayton's care is over), but we were a little sad about not having him in our lives anymore. I have not met one family that has anything negative to say about that man; everyone calls him "a great man". These men are what doctors should be. They are not perfect, but they know how to check their egos at the door and be great doctors. And the 3f8 nurses? Wonderful. They are so sweet and patient and you can see how much they care for the kids too. I totally get why they do what they do everyday now.
There is so much that goes in in this world of cancer that people will never know. Little things. Like on our last trip home, we had a card from the hospital to give them at the airport saying that Clayton had recently been injected with a radio active substance. Yes, my child was injected with a substance that said hazardous on it and required a card from the hospital to clear airport screening. Crazy huh? Or things like the fact that I have seen outside less than an hour all week- and I literally mean seen, not just been outside, but seen it. Clayton's roommates mom (the one who is 9 months pregnant) is my role model. For someone going through this, she carries herself so well and for a pregnant woman, she is unbelievable. She always seems to have her wits about her...and with a smile too.
Then of course there are the kids. This past week, a 12 year old little girl who has been battling neuroblastoma for a few years now discovered that she has pre leukemia as a result from her cancer treatments. She now has two cancers at once and has therefore decided to give up her fight and try and live her life as best she can with the time she has. This little girl is BEAUTIFUL! And her life is being cut short in such a horrible way, yet she is living the time she has left with a smile on her face. You can check her out here:
http://m.youtube.com/watch?v=1slESfh_3M0
http://m.youtube.com/watch?v=e1SI3V1Ar20
http://m.youtube.com/watch?v=FgiMnABlYdo
It is easy to go home and forget the hardships that you witness or hear about on a daily basis in a place like this, but I don't want to forget. I want to remember. I want to remember every heartbreaking detail to ensure that for the rest of my life I have the drive to fight for something that is real. It isn't enough for me to just exist without a purpose. I don't care if anybody ever knows my name, but when I die I want to die knowing that someone, some child, will benefit because I fought for something meaningful. Because Clayton fought for something. Because I was inspired by my child to be the best that I could be and to do the most that I could do with my life. I have a long way to go to achieve those things, but I have one hell of a driving force.
I hope that a lot of people (particularly politicians right now) can take a page out these children's books and learn to conduct themselves with more dignity and less hate. I will probably get an earful for this, but I am going to say it anyway: I live in this world up here and then I go home and am ashamed of most of the politicians I see. They use their power to further their own agendas and don't hesitate to abuse the lives of others with their selfishness. I am ashamed of y'all. I am ashamed that such ugliness exists in such a beautiful town like mine. I am ashamed that while so much of my life is spent surrounded by kids fighting for their lives, my home is consumed by politicians full of hatred for one another and selfishness. It is a sad sad thing...
August 7, 2012
3f8 Day 2
The residual pain continued through the morning, so we kept getting him meds to keep him comfy. He drank a couple of bottles of juice, but that's all he has had. He has mostly been sleeping other than the times he stirs to let us know he's getting uncomfortable.
Luckily, the social worker let us know yesterday afternoon that she was able to get us a room at the Ronald, so George stayed the night there and I hung with Clayton at the hospital. Clayton's restlessness didn't leave much time for sleep, but I am hoping tonight will be better.
He totally rocked his second round of 3f8. Once again, he started out asleep and this time he didn't wake up in pain until about 20 minutes in. Luckily it only lasted about 10 minutes and then he drifted back off and we were left to the sound of his little grunts in his sleep. They really try to set the tone for these kids. It isn't just some sterile environment set up for torture. They make the kids cozy and then they play soothing music and there is a dance therapist who tilts her rain stick back and forth to calm things down and she even massages his feet while he is going though the infusion. I have no idea why she is called a dance therapist, because there is no dancing involved, but I do love that rainstick. I have to get that on a sound track! They even have a massage therapist that comes in and shows the parents the best way to massage the child's feet. So they try very hard to make this as peaceful as can be expected on the kids.
Luckily, the social worker let us know yesterday afternoon that she was able to get us a room at the Ronald, so George stayed the night there and I hung with Clayton at the hospital. Clayton's restlessness didn't leave much time for sleep, but I am hoping tonight will be better.
He totally rocked his second round of 3f8. Once again, he started out asleep and this time he didn't wake up in pain until about 20 minutes in. Luckily it only lasted about 10 minutes and then he drifted back off and we were left to the sound of his little grunts in his sleep. They really try to set the tone for these kids. It isn't just some sterile environment set up for torture. They make the kids cozy and then they play soothing music and there is a dance therapist who tilts her rain stick back and forth to calm things down and she even massages his feet while he is going though the infusion. I have no idea why she is called a dance therapist, because there is no dancing involved, but I do love that rainstick. I have to get that on a sound track! They even have a massage therapist that comes in and shows the parents the best way to massage the child's feet. So they try very hard to make this as peaceful as can be expected on the kids.
August 6, 2012
3f8 Night 1
Things are going OK. There is definitely residual pain, but the worst pain is what they experience during the infusion and he made it through that great. Since then he has been resting and every 2 1/2 to 3 hours he starts getting restless and grunting in his sleep again and is ready for more pain meds. So I can imagine how it might be if we only had outpatient meds. His breathing has remained fine ( we just have the oxygen blowing in his direction) and his heart rate has not yet been below the 140s, but it has been trending downward throughout the night; there was a time when it wasn't below the 160s so we are getting there. He did start to get hives and have a little swelling around 8 pm or so. Perfectly normal reaction. Overall we are doing really good. It still isn't easy, but it could have been worse. For now, Clayton and his roommate go back and forth grunting and moaning as they need more medicine, but these sweet little boys are doing so good. The things these kids can handle are amazing; they really are champions.
Keeping in mind I am trying to be respectful of our roommate, I will say he had a very different reaction. He experienced anaphylactic shock and they cut his treatment short. I won't go into detail other than to say that I think the team of nurses and doctors did an outstanding job of handling things. Everyone is trying to decide how they will move forward. Even though he too is on his first round of 3f8, that little boy has had a much longer go of it than Clayton (he was diagnosed in 2010) and I hope everyone is able to find the decision that is right for him. These kids need health and happinesses and peace in their lives.
Hoping the rest of the night continues to get more and more peaceful...
Keeping in mind I am trying to be respectful of our roommate, I will say he had a very different reaction. He experienced anaphylactic shock and they cut his treatment short. I won't go into detail other than to say that I think the team of nurses and doctors did an outstanding job of handling things. Everyone is trying to decide how they will move forward. Even though he too is on his first round of 3f8, that little boy has had a much longer go of it than Clayton (he was diagnosed in 2010) and I hope everyone is able to find the decision that is right for him. These kids need health and happinesses and peace in their lives.
Hoping the rest of the night continues to get more and more peaceful...
3f8 Day 1 cont...
This kid rocks! Seriously. So proud. With Clayton's history, everyone was prepared for the worst with him, but he gave us his best. He was asleep when the infusion finally started at 5:10pm. The nurses checked his oxygen stat probe was working good and put the blood pressure cuffs on him. It was maybe 4 minutes in that he started squirming and within seconds that squirming turned to thrashing. Two 3f8 nurses, another nurse, the child-life specialist and George were all trying to rub hot packs all over his body to calm him as I lay in the bed with him trying to keep him calm and hold oxygen in front of his face. There was a rough 15-20 minute patch of time where we didn't know how bad it was going to get. He was thrashing sporadically trying to work through his pain and as he thrashed from side to side, I could see the terror in his eyes from the excruciating pain. It was a look of fear I have never seen from him before. Here and there, his body would go rigid and his hands would be formed like claws just shaking as the pain overtook his sweet little body. You could see him trying to work out the best thing to do and though he might never know it, he did just that; he breathed through the pain. His oxygen levels never dropped below 91- that is awesome! Around 5:25 he started falling asleep, which was fine as long as his blood pressure, oxygen and alertness remained in tact. For good measure, we would try and stimulate him from time to time just to be sure. He has been resting since about 35 minutes after starting the infusion. His heart rate remains elevated, we are continuing to blow oxygen near is face, and he grunts and moans while resting, but he did it! He made it through and got a "par for the course" from the team. In other words, he experienced the most typical reaction they see and that is wonderful- compared to the alternative.
I just traded places with George so that he could lay next to Clayton for a bit and I think I am going to grab some dinner across the street real quick. I'll come back in a bit with more info...
Ate dinner, Clayton was a little restless, so he got more drugs and now we are going to bed. This really took it out if all three of us!
More details tomorrow ...
I just traded places with George so that he could lay next to Clayton for a bit and I think I am going to grab some dinner across the street real quick. I'll come back in a bit with more info...
Ate dinner, Clayton was a little restless, so he got more drugs and now we are going to bed. This really took it out if all three of us!
More details tomorrow ...
Life behind the curtain...
The entire room is full of doctors and nurses on the other side of the curtain. The 3f8 nurses have been so calm spoken even as they said they asked for more nurses. Clayton isn't verbal, so I fear it will be much worse for us. We can't really talk him through breathing the same way.
3f8 Day 1
We're first...we're second...we are waiting...because nobody knows! It is an odd situation. We are in a room with two kids who have no idea what's coming, all the while us parents are left to wonder if it is going to be as bad as we've heard, worse or if we are just psyching ourselves out.
It is crazy. For a room that is going to be in such a bad place in a couple of hours, it sure was the loudest most lively room this morning with two happy little boys.
They have pre-medded Clayton with lots of things at this point, but we aren't yet close enough for the dilaudid. Dilaudid is their narcotic of choice for pain management. The child-life specialist has brought in a CD player with a track of what is suppose to be soothing sounds for the kids during this. They have prepared the oxygen masks, and the suction and hung a bag of emergency meds. I also noticed a crash cart outside the door, but that might always be there...not sure.
The actual 3f8 nurses have started coming in and out...everyone was sure we would be first, but it looks like we will be second since pharmacy sent up our roommates meds first...
The way things will go, we will sit here on our side of the curtain while our roommates go through their first dose and immediately after it will be our turn.
God help these babies through this!
Clayton and I are definitely feeling some of our meds. Yes, I took something for me. I probably look stupid trying to eat my salad cause I'm a little...slow right now...there is a lady with a rainmaker here and everything...you know those sticks they use to have at Moonstone in Fairhope. Very soothing...
It is crazy. For a room that is going to be in such a bad place in a couple of hours, it sure was the loudest most lively room this morning with two happy little boys.
They have pre-medded Clayton with lots of things at this point, but we aren't yet close enough for the dilaudid. Dilaudid is their narcotic of choice for pain management. The child-life specialist has brought in a CD player with a track of what is suppose to be soothing sounds for the kids during this. They have prepared the oxygen masks, and the suction and hung a bag of emergency meds. I also noticed a crash cart outside the door, but that might always be there...not sure.
The actual 3f8 nurses have started coming in and out...everyone was sure we would be first, but it looks like we will be second since pharmacy sent up our roommates meds first...
The way things will go, we will sit here on our side of the curtain while our roommates go through their first dose and immediately after it will be our turn.
God help these babies through this!
Clayton and I are definitely feeling some of our meds. Yes, I took something for me. I probably look stupid trying to eat my salad cause I'm a little...slow right now...there is a lady with a rainmaker here and everything...you know those sticks they use to have at Moonstone in Fairhope. Very soothing...
August 5, 2012...the eve of 3f8
We made it to NYC. We even arrived a little early. No woo hoo's here though. This feels more like a "business trip" than ever before. We are here for one reason and one reason only, 3f8. We dont even have a room at RMH right now. There was some confusion about our reservation and the normal neuroblastoma social worker was out all week and the on-call social worker wasn't able to help us any further. So for now- and maybe the whole week- the 9th floor at MSKCC is our only home here in NYC.
George and I have definitely been on edge all day. It is hard to suppress the fear and frustration that comes along with this disease and especially this treatment. Even when I found out it was definitely a go last week, in that moment I had to hold it together. All of the anticipation just wanted to come rushing forward.
We know this is the right thing though. All of the research and the pain have led us here to this hospital and these doctors and in large part, this treatment. While that will not make the week easier, it is what makes it possible for us to get through it even when we have no idea how. This week will be hard for everyone. What we are doing is unimaginable and yet like so many other parents, we have found ourselves in agreement with the doctors here that this is the best thing for Clayton. There was a time when my child having cancer was unimaginable and yet here we are. So we can do this. We will suck it up and we will do it, because it is the difference is Clayton having a 20-40% chance of survival verses a 40-70% chance of survival- rough numbers given by the doctor.
We are here and we are settled in our little nook. Yes, even for 3f8 you have a nook rather than a room to yourself. Our roommates got here a little after us last night and I was excited to see who they were. I had seen them before in the day hospital. They have a little boy near Clayton's age and from what I could hear of his video last night, he is a CARS fan too. Two peas in their little 3f8 pod for the week. This is their first round of the 3f8 as well. I really couldn't be happier about our roommates. Good roommates makes a big difference.
Pain is one of the ways your heart breaks and it is not something you want to experience in front of strangers, however, having cancer forces you to do that on a regular basis. It is a comfort knowing that the pain of the events this week will be shared with a family in a similar place. Because we WILL be sharing everything. We will both be doing the 3f8 here in our rooms rather than on the 3f8 wing. We will both be able to hear everything each other and our children are going through. Every whimper and frantic effort to stop the pain will be shared. The horrible part is that one of us has to go first. Which means the other parents have to sit through it and listen to everything from behind a curtain knowing it is their turn next. Then of course for the ones that go first, when they finally think it is over, they have to relive it listening to the other child go through it. Even if it is not your child I imagine it is heartbreaking listening to any child experience that level of discomfort. It is going to suck and no jokes about being armed with klonopins are going to change that.
Pray hard for whatever will help Clayton get through this.
The room isn't as bad as it looks in the picture. Small, but not bad. We walked through the halls, and even here at MSKCC they are dreaming of 5 o'clock somewhere.
George and I have definitely been on edge all day. It is hard to suppress the fear and frustration that comes along with this disease and especially this treatment. Even when I found out it was definitely a go last week, in that moment I had to hold it together. All of the anticipation just wanted to come rushing forward.
We know this is the right thing though. All of the research and the pain have led us here to this hospital and these doctors and in large part, this treatment. While that will not make the week easier, it is what makes it possible for us to get through it even when we have no idea how. This week will be hard for everyone. What we are doing is unimaginable and yet like so many other parents, we have found ourselves in agreement with the doctors here that this is the best thing for Clayton. There was a time when my child having cancer was unimaginable and yet here we are. So we can do this. We will suck it up and we will do it, because it is the difference is Clayton having a 20-40% chance of survival verses a 40-70% chance of survival- rough numbers given by the doctor.
We are here and we are settled in our little nook. Yes, even for 3f8 you have a nook rather than a room to yourself. Our roommates got here a little after us last night and I was excited to see who they were. I had seen them before in the day hospital. They have a little boy near Clayton's age and from what I could hear of his video last night, he is a CARS fan too. Two peas in their little 3f8 pod for the week. This is their first round of the 3f8 as well. I really couldn't be happier about our roommates. Good roommates makes a big difference.
Pain is one of the ways your heart breaks and it is not something you want to experience in front of strangers, however, having cancer forces you to do that on a regular basis. It is a comfort knowing that the pain of the events this week will be shared with a family in a similar place. Because we WILL be sharing everything. We will both be doing the 3f8 here in our rooms rather than on the 3f8 wing. We will both be able to hear everything each other and our children are going through. Every whimper and frantic effort to stop the pain will be shared. The horrible part is that one of us has to go first. Which means the other parents have to sit through it and listen to everything from behind a curtain knowing it is their turn next. Then of course for the ones that go first, when they finally think it is over, they have to relive it listening to the other child go through it. Even if it is not your child I imagine it is heartbreaking listening to any child experience that level of discomfort. It is going to suck and no jokes about being armed with klonopins are going to change that.
Pray hard for whatever will help Clayton get through this.
The room isn't as bad as it looks in the picture. Small, but not bad. We walked through the halls, and even here at MSKCC they are dreaming of 5 o'clock somewhere.
August 5, 2012
August 4, 2012
I am really at a loss of what to say. I have a bazillion things going through my head. Truthfully, I am not so much at a loss of something to say, as I am finding that there is so much to say, I have no idea where to start.
I guess I'll start with home. It has been so nice to be home. It always is nice; but definitely never dull...I went to the dentist for a filling and walked out with a pricey crown because insurance won't cover it until after January; but what are you suppose to do when your in the chair and you have a huge hole in your tooth and have to make a decision? You make the choice that you think will leave you with the least discomfort. So I traded a hole in my tooth for a hole in my wallet. THEN we noticed the dog was acting funny. Slowly she stopped eating and drinking and even moving much. Come to find out she had pancreatitis. So after an overnight stay at the vet, some IV fluids and some antibiotics later, she is recovering with George's folks. On the flip side, I had an amazing dinner with a dear friend. Getting to relax with good company is rare these days, so that was a real treat. I also got to do more purging! Yay for de-cluttering the house...it feels so good! AND I met with some ladies from the BCBE about Clayton's preschool; starting August 20th he'll go three mornings a week! I'm hoping he can go to the Learning Tree the other two mornings if they have room...?
The question remains what do you do knowing you are about to face one of the toughest weeks of your life? You try not to think about it. You find your self more irritable than normal and trying not to take your frustrations and fears out on every one else. For months you have been trying not to take your frustrations out on others or to project your fears onto other things. It is a battle that sometimes you win and sometimes you lose. You obsess about things- things with work, things with home, personal goals, all kinds of things- all just trying not to think too much about it. At least that's what I do...did...have found myself doing. But now it's time and I can't ignore it or continue to talk about it like it is just another "means to an end". It will be my reality every day this week and in a month I'll have to do it all again...
For now, the kind folks at Dove were sweet enough to give me some inspirational messages throughout the week...
I guess I'll start with home. It has been so nice to be home. It always is nice; but definitely never dull...I went to the dentist for a filling and walked out with a pricey crown because insurance won't cover it until after January; but what are you suppose to do when your in the chair and you have a huge hole in your tooth and have to make a decision? You make the choice that you think will leave you with the least discomfort. So I traded a hole in my tooth for a hole in my wallet. THEN we noticed the dog was acting funny. Slowly she stopped eating and drinking and even moving much. Come to find out she had pancreatitis. So after an overnight stay at the vet, some IV fluids and some antibiotics later, she is recovering with George's folks. On the flip side, I had an amazing dinner with a dear friend. Getting to relax with good company is rare these days, so that was a real treat. I also got to do more purging! Yay for de-cluttering the house...it feels so good! AND I met with some ladies from the BCBE about Clayton's preschool; starting August 20th he'll go three mornings a week! I'm hoping he can go to the Learning Tree the other two mornings if they have room...?
The question remains what do you do knowing you are about to face one of the toughest weeks of your life? You try not to think about it. You find your self more irritable than normal and trying not to take your frustrations and fears out on every one else. For months you have been trying not to take your frustrations out on others or to project your fears onto other things. It is a battle that sometimes you win and sometimes you lose. You obsess about things- things with work, things with home, personal goals, all kinds of things- all just trying not to think too much about it. At least that's what I do...did...have found myself doing. But now it's time and I can't ignore it or continue to talk about it like it is just another "means to an end". It will be my reality every day this week and in a month I'll have to do it all again...
For now, the kind folks at Dove were sweet enough to give me some inspirational messages throughout the week...
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