February 26, 2012

We're back! You might not have known we were gone. Well, we were. Trying to be stealthy and safe by keeping it quiet...Don't want any break-ins...burglars beware, our house is protected! Anyhow, we took a trip to Dallas to meet with Clayton's new orthopedic surgeon and make a plan... We actually have been back since Tuesday, but I've been working hard making up time at work, so I'm a little late on posting...We spent pretty much all day Monday at the hospital. We met with the nurse, the fellow and then briefly saw the doctor before heading off to do X-rays and then meeting with the doctor again. Clayton was not cooperative that morning and as luck would have it, he was the only child misbehaving in the waiting area. Always fun when people stare at you while you try and quiet your screaming child. Thankfully, somewhere between the X-rays he changed his tune and spent the rest of the afternoon being super patient...at least as patient as a four year old can be. After the X-rays, we went back and after a good sized wait, got to talk with the doctor. We talked for a while and went over various scenarios. He explained that it would be difficult to decide which surgery to do until we see how Clayton responds to halo-wheelchair traction. He feels that while we are doing traction, we can get to know him and he can get to know Clayton and we can all decide what the best option will be. I felt really good about the visit despite the fact that the idea of my baby in a medieval-like contraption made want to run from the room and catch my breath; which of course I couldnt do, I had to stand there like a rational mother; not the distraught mother picturing her life for a month or more living in a hospital in Dallas with a child in wheelchair traction while my other half is back in Alabama working. Yep, just me and Clayton all alone in Dallas...for a while. Hearing that information, is the moment where you literally feel everything coming to the surface and you just have to try like hec to suppress it. I knew going into this he was going to need the traction, but hearing it and making a plan just makes it so much more real. Its hard to wrestle with the idea of putting Clayton through traction while he is healthy and cancer free. I hate that he has to spend any of his healthy days in a hospital and making the decision to move forward with this kills me for that reason. I know thought that if Clayton's cancer comes back, then we need every advantage we can get and a straight back that doesn't cause respiratory issues is a huge advantage. This doctor fills me with hope that moving forward now is definitely the best thing for Clayton. He is the confirmation I needed to know we have come to the right place. It won't be easy, but it will all be worth it. When it is finally over, George and I can finally get some much needed relief and Clayton gets to move ahead a little taller.

I'll come back with details of our plan later...

Clayton's Happy Face...

I know my last post was hard to read.  It was the truth though and the truth isn't always easy.  Pediatric cancer is anything, but easy.  I think one of the biggest problems in the fight against pediatric cancer is that most people don't realize what the kids go through.  What the families go through.  If Clayton stays NED then we will be more fortunate than many families.  It would mean that we would be spared a significant amount of pain that comes from more treatment. The thing about it is this:  every tear, every hateful word during moments of frustration, every fear, every day away from home, every everything...100% worth it just to see my baby smile.
This is worth fighting for: (excuse the VERY messy house in the back)

February 2013

I'm struggling lately. I can't watch or even read anything about a child passing without losing it. There are days I walk into Clayton's room and go crazy with the thought of losing him and what I would do. The idea of his room ever being anything other than his room is unthinkable. Yet, it crosses my mind on days I'm bogged down by fear. I think about things no mother and certainly no 26 year old should be thinking about like the kind of service I would have if I lost Clayton. Those things should not be crossing my mind...ever. And one of the things that I fear the most and crosses my mind too often was recently voiced by another mother. The idea of "leaving" Clayton. If I lost him, I feel like I would never be able to walk away from what is left of him here on earth. I don't know how to do that. I'm sure no parent knows how to do that. Again not something I should be thinking about. It was odd hearing another mother talk about it because I have never even voiced this fear to George. Sometimes the thoughts that this journey has left me with from time to time make me feel like a freak. No normal person thinks about these things right? No "normal" person, just a "cancer mom". I'm angry and sad and lost in everything. There are things I wish I could say or do and I can't, because I'm suppose to go into the world every day and be normal. I'm not suppose to be consumed by the fear of losing my child. I'm not suppose to be pissed off that more isn't being done to help pediatric cancer. I'm just suppose to believe everything will be OK and be thankful for where we are; which I am.
But what about our friends who aren't OK? What about all of the other warriors and angels? That's what we (the parents) call them; they are all warriors or angels. What about them? I can't pretend they don't exist. I certainly can't forget them. How can I be OK, being so gosh damn aware that too many of them are suffering? How can I live everyday doing nothing to help them? The answer: I'm not. I'm not OK. It is not OK. There are kids like Clayton and Matthew that are OK today, but what about tomorrow? Just two months ago, Abigail was OK with a head full of hair, but today she is again bald and fighting. And sure I know the whole "live for today" thing, but if I don't think about tomorrow, the day will likely come where I have no tomorrow with my child. That is not OK. I don't have the luxury of living for today alone.
There are many tragedies we can't foresee. Such as the recent one in Newtown, CT, but we can work to prevent the 2,300 children in the US who fall victim to pediatric cancer each year. We can work to make treatment easier for the 12,500 children who are diagnosed with pediatric cancer in the US each year. So why can't pediatric cancer inspire the same level of outrage as a school shooting? What if we filled 10 rooms, each with 2,300 pictures of children who have lost their battle to cancer to represent the victims of pediatric cancer over the past decade? Would that make an impact? What if people were more aware of what a horrible death the children suffer? What if people knew the pain these kids experience? If we can work towards preventing pain, why wouldn't we? What does it take to keep up the momentum in the fight against cancer?

 

Right now, there is a VERY promising neuroblastoma vaccine that some of our amazing doctors have developed. I was told in December Clayton could not have it. Why? Because they only have enough funds for about 15 kids to receive the vaccine. Therefore they are reserving the vaccine for children who have relapsed and then entered their second remission. That "no" was a whole new kind of devastating. And as bad as it hurts to know the thing that might hold the most promise of saving Clayton's life long term he cannot have, I understand why they are reserving it for kids in their second remission. It hurts pretty damn bad though that my son can't have a possible life saving vaccine because there is not enough money to produce it for more kids to have it. $150,000 buys enough vaccine for 15 kids. If I thought I could show up at the hospital give them $10,000 and get the vaccine for Clayton, I would. I would find a way to get that $10,000 and I would be there tomorrow. Oh, I would. But it doesn't work that way. They need more funding and because they don't have it, Clayton and others like him, have to relapse (and risk death and severe side effects again) before they can even be considered a candidate for the vaccine...and even then there is only a small supply of the vaccine available. And what makes all of it so so terrible, is that these kids have to suffer. The treatment is heartbreaking and the time spent when the treatment is no longer effective is unbearable. Here are some clips from the blogs of some of my "cancer babies" to paint a picture of the things that haunt me:

"Megan, herself, was quite alert last night back at the RMcDH. A friend bought her a new baby dolly and when *Jane* went to take it from her to clean her hands she moaned to get it back. Given the fact that Megan is now limited in her ability to respond verbally, this was a huge positive development. Megan’s left leg has returned to its usual cold state. Megan has not eaten anything by mouth in about four months. She can move her eyes, her fingers and hands and her head slightly but that’s it. She has not moved her legs or her body in over six months. Megan has suffered from severe constipation for the past twelve days of hospitalization caused by increased pain medication. Her constipation is so severe, she looks like a pregnant woman would look. Her urinary catheter is continually getting blocked because of our inability to prevent one UTI after another, a fact of life when a catheter is inserted for as long as Megan’s, around five months. Megan’s bed sore has still not cured fully but we have prevented any more from developing. In the hospital Megan developed a cough that she has since cleared but needed a lot of suctioning, nebulizing and oxygen to get her through it. We now have all this equipment back at the RMcDH in case of an emergency. Megan is still quite edemic around her face, a known side effect of Vorinostat and it is a constant battle to make sure that this does not affect her breathing. Despite every best effort to control her pain, she has managed to ware down the tops of her teeth from grinding. Once she starts grinding it is very difficult to get her to stop.
On a positive note, she is still alive. All of her vital organs are functioning properly. She is still producing urine. Her heart rate and blood pressure are close to normal albeit with the help of blood pressure medication. She is breathing comfortably and is sleeping well. Right now she is like sleeping beauty beside me."
That was written by her father on December 8, 2012. At one point during her two year journey, her father promised her he would fix her. I cannot imagine a father that could have or would have done more. At one point he picketed up and down a hospital hallway when a doctor refused to treat Megan. He was then forced to present his case in front of an ethics committee all while his sweet little girl was fighting for her life. On December 18, 2012 Megan passed away.


Then there is Connor:
"...when you touch his skull, all you feel is tumors pushing through.......Our weekend was a horrible one. Connor woke up on Saturday morning and his right eye was worse than the day before. He was allready in so much pain from the night before, complained about very bad headaches and vomited. His eye looked like someone has punch him it was all black and blue, the inside of the eye was so red it looked as if someone has poured red food colouring into it. He was crying most of the time about pain in his eye, his head and lower back. So the weekend continued. Monday came and I left to fetch *John* from school when *Joe* phoned me to say "Mom something is wrong with Connor he is shaking, his arm is going all over the place and it is stiff, we can't touch him and he is screaming that it is sore". I got *John* and rushed back home. Connor was fast asleep but then when I saw *Joe* he just started crying and told me more. Poor *Jane* our domestic was in a state and also crying cause she said she doesn't know what she would have done without *Joe*. *Joe* even warmed up a beanie bag and put it on Connor's arm to see if that will help. I phoned *Brad* who then phoned the Docter and they scheduled Connor for emergency whole skull radiation. It was confirmed that Connor had a seizure due to the tumours are pressing on his brain. The docters have increased his pain medication as well as added steriods/cortisones to help with the swelling etc., so we are also hoping that it will give him some appetite as well cause he is not eating much. We came home from hospital and he settled down. He had two mild ones later. Connor will be having whole skull radiation for 10days and then we will see what happens. We are still praying that he will get his miracle cause right now he needs it. It is painfull to hear him cry in pain. No amount of words can express the pain in my heart and what my family is going through. No one should be living like this it is beyond horrible."
Connor is 11 years old and has been fighting for seven years. That was written by his mother in January 2013...he is still fighting.



And of course five year old Matthew...
"In reality...it's the nights like tonight though...the ones where he wakes up freaked out refusing to go back to sleep because of nightmares....the nights when sleep fails and his mind runs like a kid in a candy store and he asks me the hardest and most gut wrenching questions about Heaven and living with Jesus. Where he gets hysterical because he asks about JR or Timothy....then he gets upset because they don't have their moms with them. Then he asks me if I will go up there first so that he won't have to go up there and be alone without a mom. That's every moms plan right...get up there before your child....and mine is in tears asking me if I will please go up first so that he doesn't have to go up and be alone. I tell him he isn't going up to Jesus and that C-Man (cancer) is going away and he doesn't need to worry about it. He can't even begin to listen though because all he keeps saying is can you please go up there first mom. Then I have to remind him all about Heavenly Father being just like his own Dad here on earth....and as much as he loves his dad, he loves his Heavenly Father that much to.....and just like his own dad loves him with all his heart, Heavenly Father loves him that much to.....and just like he has a mom here on earth He has a Heavenly Mother in Heaven as well. As much as he loves me he loves her that much to...and as much as I love him she loves him that much to....I tell him he just doesn't remember her right now but that he never has to worry...because he has a Heavenly Father and Mother.....and countless others who love him and are waiting for him. Then he starts to worry that all of the people that love him don't have the things in Heaven that they like to do for fun.............
All together just a conversation for adults....but he wouldn't let me out of it. After all of that he just starts crying and says this is just too sad............
All of the specific people he asks about and worries about plaguing him in the middle of the night....his adult questions and his pleading for more information all the time.....I have had to stop allowing him to hear about his other buddies that have past since JR....when he asks I tell him they are all better. I am a big fat liar yes, but they are all better...and that's the only concept he needs to understand right now......that wether they are all better here or all better in Heaven, they are all better. They don't hurt, they don't have sad things or hard things, they are all better. At this point I am just a wreck and grateful that its dark so he can't see me cry and as I hold him I have my head placed strategically so the tears don't get anywhere near him. My little man should be sleeping, not worrying about wether his mom will die first or if he will....not worrying about making sure both he and I are there so that his dad doesn't have to go alone because he said that will be too hard for his dad. Little does he know its way harder on the ones that go after....who have to grieve and mourn and hurt. I want to crawl out of my skin....I want to run away and cry and sob and be mad that he is asking all of these things and can't sleep because he is thinking about all of the people up, with Jesus and worried about how they got there, and if they are having fun. Then worst question of all time....as he is crying and genuinely concerned "will it hurt when I leave to go live with Jesus?" "How will Heavenly Father get C-Man out when I get up there?" Ugh I could choke at this point cause this conversation is emotionally way too much for me....I tell him no it won't hurt, but that he didn't have to worry about it.....I reminded him that the medicine is working and all the hard stuff he is doing is working and that C-Man is going away and that he doesn't have to worry. He then wanted hypothetically if things didn't work out how does Heavenly Father get C-man out.....had to explain that C-Man can't live in his body if his spirit is up with Jesus but again to stop worrying because that wasn't going to happen. Then he looks at me again ready to start bawling and says I just want to stay here....so I reminded him that's why we do the hard stuff every day...we are fighting C-Man and kicking him out so that mommy can get her wish. When asked on New Years by Dilynn (little brother) what my wish was I said " that you and Matthew can be little old men together." To which he replied " wow, that's a great wish mom." Again another unnatural conversation that I held with my fifty year old two year old. The tears are flowing.....my head is pounding and as I sit here with Matthew restless by my side I am haunted by the truth......cancer doesn't peacefully take its victims...I have personally watched the suffering and those experiences will forever be painful to remember and they hurt me as an onlooker. I am praying that for all those sweet angels that have had to endure this felt nothing but peace and what we watched their bodies endure at the end was not what their sweet spirits endured..."

Matthew is not NED, but thanks to a ground breaking treatment, he has shown significant improvement and will get to go home soon after having been doing treatment in NYC for nine months straight.


And last is Audrianna,
"Audrianna asked me in the car today Mommy when someone dies do they get buried...so i said yes baby they get buried in a cemetary(just like the one we happened to be driving past)she said oh ok what are those stones for...i told her they were called headstones and they had the persons name on them so that people who loved them would know where to look for them when they visited them in the cemetary...she then asked why there were flowers on the one grave and i told her because someone had died and someone they loved had visited and put flowers down.....Audrianna then said you mean like when Grandma Died Mommy and I said yes baby,when mommy and Nana go vist her we put flowers on her grave...then she asked me if i would put flowers on her's when she died and went to heaven with all of her friends and Grandma....I stopped and couldnt speak while the tears rolled down my face as i was driving and then i said Yes Baby someone You love will put flowers on your grave when you go to Heaven but Your gonna live a Long time so it probably wont be mommy.....and she said no mommy i think it will be you... and then she changed the subject and asked me to put the music on....I cried for the next 15 minutes silently in the front seat of the car as i drove because all i could think is she is a warrior and tells me all the time she talks to angel's so maybe she knows something i don't.....but please dont let her be right because i dont know how i would handle having to put flowers on her grave...."

That was October 2012, this is February 2013:

"Audrianna passed away peacefully in my arms at 545pm friday febuary 15th after a very long hard fight. Her poor little body couldnt take anymore,she didnt want to go believe me she was fighting so hard to stay,kept saying mom and i love you untill she couldnt talk anymore and her breathing got labored and then her heart stopped beating...this is the reality of pediatric cancer that no parent should ever have to suffer....even worse was after and still now i hurt so bad i want to die i want to lay down and never wake up. I had to watch the funeral home zip my baby into a bag last night A $&@?ING BAG i have never felt more helpless or more alone then in right that second...rationally i knew she was already playing with the Angel's who were waiting for her...Kelly,Tanner,Emily,Hudson,Kelsey,Ashley and so many others but i wasnt rational and all i could think is she is gonna be alone and cold and i have never left her before not once in her whole life how do i leave her now, just how.After i let them take her and we left the hospital, i couldnt get off the elevator, i felt like if i did id be admitting she was gone and i wasnt ready to admit that, my parents had to peel me off the floor because i couldnt do it alone.I came home and slept in her bed last night,with her teddy bear and her pillow and blanket because it smells like her and again today i need to call and tell them to come take her bed away because its a hospital bed on rental so thats just one more piece of her im losing...i feel like my heart is in so many pieces i will never be able to pick it up again and i dont know how to keep breathing without her.I am leaving in 2hours to go setup to have my child creamated and pickout an urn, yet another thing nobody should have to do for there 6yr old....$&@? YOU CANCER!



There are days where George and I dream about Clayton talking. There have been times I've cried at the idea of losing my child and never being called mom. I have wished desperately as I have held him down screaming, that I could just calm him by explaining what was going on and him understanding it. I have wished I could bribe him. I have wished he could tell me how he feels. I have wished for a word...any word. And then there have been moments I have been so grateful not to have to explain the whys. The questions some of these kids ask are crazy. It shows how much they really know. I mean how in the hell do you answer them, really? What do you say if your child asks "will you go to Heaven first so I don't have to be alone?" Because here is the thing, at that age, your child isn't likely to be worried about Jesus being in Heaven; your child wants you. And then to be asked if it will hurt. Oh, it hurts to think about. You know what happens when the cancer takes over their body, but you can't say that.
Sometimes it is all OK and other times, it is all too much. Emotions come to the surface when I don't want them to. Sometimes I feel like I have lost the ability to control my tears. Something completely unrelated will stir up some kind of emotion and the gates just open. I hate that. It isn't even necessarily because I'm sad, sometimes it's because I'm furious about something. Oh and my childhood asthma seems to have come back. For a few weeks now, I have taken to using one of Clayton's older albuterol inhalers. Probably not very effective on me, but it helps me mentally. I told George I'm having sympathy asthma. I have anxiety attacks at random times, for no apparent reason and find myself having to talk myself down. Literally, I have to tell myself everything is fine, calm down, just breath. It's ridiculous. Clayton is in remission, and I am more of a mess now, then I was when he still had the cancer. I guess it is because it feels like we are not fighting. When something tries to kill your baby, it just seems scary to ever not be fighting that thing. I shouldn't say we are not fighting, we are. We are waiting on Clayton's body to show signs of being receptive for us to do our next 3f8 treatment. Meanwhile, we just finished our fifth of six rounds of accutane therapy. Things are just crazy though. Not a lot of time to breath because as soon as we became cancer free, we had to turn right around and get on top of his back stuff and then we had respiratory issues thrown into the mix. Then these different babies keep passing and each one is a new heart break and a reality check. This cancer is so nasty and aggressive that for some of these families, their lives get turned upside down in a day and then they are only left with a few months. Just so many damn things going around in my head constantly. Sometimes it feels like there is no room to breathe. I know the word depression might have popped into some people's head during this post, but I am familiar with depression and this is not it. I'm not hopeless or continuously sad. I'm frustrated, but very capable of being happy everyday. Frustrated at all of the unfair bull crap around me. The only time I stay sad for any length of time is when I learn of another warrior becoming and angel. It breaks my heart... then it frustrates me. I have mulled over this feeling for a while and the best way I can describe is like this:
Imagine you live in an apartment building. One day, it catches fire. You and your family get out of the fire, but you hear other people screaming for help and you notice that you haven't yet seen some of the neighbors kids come out. You know they are in trouble, but there aren't enough firefighters to rescue them all in time and you can't run in and safe them yourself. Your left watching as the flames engulf the lives of innocent families. In the end only a few more get out safely. You feel helpless. You feel like crap. You are thankful you and your family are safe, but you have survivors' guilt. You are filled with happiness and sorrow. You wish you could have done more and you can't get that day out of your head. The lives lost continue to bother you. All the what ifs keep running through your head. Your left feeling stuck wanting to somehow make it right in the future. Might sound stupid, but that is the best way I could think to describe it.
This post has been a "draft" for about two weeks, so I'm just going to post it complete or not!

February 11, 2013

A recap. On the way home from NYC I seemed to have picked up a nasty, nasty cold. It lasted for nearly two weeks; last week being the second week into it. I was desperately hoping Clayton would not pick it up, but no such luck. Sure enough, last week, Clayton began getting sick. We were on our toes all week fearful of a croup episode. Thankfully, he never got croup, but Friday night he did seem to have an asthma attack from everything. We used everything we had to treat it, which seemed to keep him stable and kept his airway open, but he still seemed to be pulling a little more than normal. We tried to go to the ER thinking that he might need a racemic epinephrine treatment, but it was full. Not sure what was in the air Friday night, but everybody apparently decided to go to the ER all at once. No way we were going to wait there, so we went home thinking we would keep monitoring it and just call an ambulance if needed. In the end we managed on our own. Clayton has had lots of drainage and coughing, but he slowly improved night to night. We just watched his O2 constantly making for a sleepless night Friday, but better as the weekend went on.
Thankfully, he is doing much, much better now. Sorry for such a blah sounding post. Not much of a writer today.

February 6, 2013

Another croup-free night! Yay! Poor thing definitely has a cold though. Hopefully it will pass more quickly than mine...I'll come back tonight with more...

February 4, 2013...Updated

Still here. Still sick; and just got Clayton's book bag ready in case we have a midnight run to the ER. Of course he seems to be getting sick tonight. I have been desperately hoping that he wouldn't catch the same mess I have, but it's hard to take care of someone without sharing germs. George and I of course pray that if he does continue to get sick, that it can be a normal sick. We 'll take him to the doctor tomorrow, get an antibiotic to prevent infection and hopefully never see any signs of croup. Please, please pray that is how this turns out...that or better and he doesn't get sick at all. We have been doing his "puffs" routinely though, so hopefully that will act as a preventative against croup. A lot of times when he would get croup though, he would get it right before he started showing signs of being sick...so maybe we have passed the bad point? I know this, his croup was starting a pattern of every other month and the last time he had it, I got sick right after and had the craziest nosebleeds ever. Right now, I'm already sick...but I did start having nosebleeds today. I know, I know, I'm grasping at straws trying to make sense of this in some way. Trying to find a pattern or sequence of events that would somehow be that "thing" we need to tell us what to do. Unfortunately nothing like that exists, yet I still grasp at straws because it somehow channels the fear into a more manageable state.
Tonight will be sleepless. It will be listening to every breath, doing chest PTs if necessary and trying to "encourage" my sleeping four year old to cough. All of that is fine though. I just pray there is no croup. But if there is, I am giving him the oral steroid immediately. I have the steroid ready, the O2 monitor handy, the inhaler and the nebulizer nearby and a bag packed for the ER. Please pray I don't need it!
Starting to wonder if the nosebleeds are from stress!

**Updated**
We made it through the night with no croup! Clayton was a little rattle-y on and off and definitely has some drainage moving around, but as of now, no croup. Hoping it stays that way.
This respiratory stuff is so worrisome because you never know when it might act up. For now we are very hopeful his steroid inhaler will do its job. But just in case, we are sleeping a little uneasy, constantly listening to him at night, rotating him trying not to give that drainage a chance to settle, doing chest PTs and trying to "encourage" him to cough to clear his throat. You can tell we've spent some time in a hospital huh?...