December 4, 2012

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown

November 28, 2012...another late one

I knew that at some point, it would happen, and sadly it has. A little boy we met on our journey with cancer has passed away. I did not know this family as well as I know other families, but the little boy was right around Clayton's age and was diagnosed October 2011; so just a month before Clayton. Sadly, he passed away on Halloween this year. I don't keep up with him the way I do my other babies, so I had not checked on him since early October. At that time, a CT had shown some tumor growth. It seems after that things just went down hill. I found out about a week ago and have just been mulling it over in my head for a bit. Its weird because I was not close to his family like I am to others, but my heart hurts for them all the same. This little boy's story is so difficult to understand too.
He was diagnosed last October and told that he intermediate risk neuroblastoma and a 90% chance of survival. They began treating him with the appropriate chemo and when it was time to remove his tumor in May, they sought out Dr. La Quaglia. Dr. La Quaglia reported to them that the cancer was not consistent with the original diagnosis given to them by their hospital back home. He said the diagnosis should have been stage IV high risk from the beginning. BIG difference in treatment protocols between different stages and risks. He had to perform a whipple and when he tried to resect the tumor, he found that it was "sticky". So after the months of doing intermediate risk chemo, the tumor was now just pissed off so to speak and they had to start all over with high dose chemo. Doctors have to be careful about chemotherapy regimens, because some cancers can build up a resistance to it and that is something they are suppose to work to avoid. All those months wasted because of a hospital that wasn't equipped to handle a case like this little boy's. Because a hospital wasn't smart enough to recognize his case was out of their league. I remember when his mom first told me the story, I was in shock that a hospital made such a HUGE mistake. And now, his parents will never know what might have been if things had been sone right from the start.
Even the best doctors and hospitals screw up and make mistakes or just do something that seems stupid or frustrating, but there is a difference between "normal" or "appropriate" mistakes and the blunders that should be avoided. You have to give credit to pediatric doctors for having the courage to work on kids because I am sure that is a very tough thing for many many reasons. However, those that aren't up to the task or don't know how to check their ego at the door just need to go away. They aren't needed and certainly aren't wanted by the parents.


Clayton saw four of his doctors in the two months leading up to his diagnosis; he had an x-ray in September and even had an ultrasound in October. Crap, we even did a urine analysis on Clayton in October. He saw some of his doctors multiple times during those two months. They all felt his belly, yet, no one caught the cancer. Of course we have no idea how fast the tumor grew either. My point is that it would seem that those doctors did all miss something somehow, but I do not hold it against them or love them any less as Clayton's doctors. It doesn't even make me trust them any less. In fact, I have put my trust in all of them at various times during the course of his treatment and I have no qualms about trusting them in the future. It is very normal for doctors to miss neuroblastoma until it gets further along. There is a big difference between something like that and a doctor not taking action when a known cancer patient is having around-the-clock bloody urine and pecan-sized blood clots coming out of his little four-year old man parts. There is a big difference when people miss something that is hidden verses when they ignore something that is slapping them in the face. The crazy thing is that I already didn't like that doctor, but I was continuing to trust her because she is the doctor...and then she tried to blame me and George for her not doing anything more than what she had done! Tried to say it was our fault for not better informing her! We asked every day what was going on, what the plan was, shared our concerns, took pictures of most of his diapers and gave every diaper to the nurses, what else were we suppose to do, shove them under her nose? Then she even complained about the days when our mothers would be at the hospital and George and I would be at work, so we asked if during normal rounding times she would call me since we weren't there. I'm sorry, but that is my time as a parent to know what is going on with my child so whether a doctor is standing in a room talking to me or on the phone with me, it shouldn't matter, that is my time and my right as a parent to be informed about my child's medical care. To this day, her behavior amazes me...and obviously not in a good way. I was also told point blank by one of her partners that there was no need for us to antibody therapy unless Clayton relapsed. Not true. In fact, COG officials stated a few years ago just how important antibody therapy was to neuroblastoma...a piece of information my research, not the doctors, led me to. And yes, I have irrefutable proof of COGs position on that matter. Thank God I didn't listen to that doctor.
I know there are a couple of family members who like to say that when it comes to these two doctors, I need to suck it up and get along with them, trust them, work with them for Clayton's best interest, etc. I have listened to the comments here and there for months and for the most part I have said nothing out of respect. But I am reaching the end of my line with some things now, so I am going to speak my peace here. Please stop. Please stop before I start screaming at you at the top of my lungs because you have no idea what you are talking about. I know ALL of the aspects of my son's care and I know what is best. What I don't know, I research and I learn. When I make a bad judgement call, I am big enough to admit it; something those doctors couldn't do. I know your heart may be in the right place wanting the best for Clayton, but you should know that everything I do is so he can have the best and that includes picking and choosing doctors. I deserve the respect of not being questioned about my feelings on doctors and that includes being told I need to find a way to work with them. I will and do always work with the doctors I feel are in Clayton's best interest. If you can't respect my feelings and my judgement calls then please follow Thumper's rule and just say nothing at all.

November 21- 25, 2012

This morning was pure fear. I have recounted the story many times throughout the day and as I recount it, it gets easier to tell, but the reality of that moment hasn't changed. Even as I've told the story, there are parts I haven't been able to talk about.
Yesterday Clayton started to act like he might get sick. By last night he was rattling like a freight train and coughing like mad. We gave him some Claritin and Tylenol for a 100.7 degree temperature and we all went to bed. Around 5 am we all woke up and Clayton tossed and turned trying to get back to sleep...still rattling and still coughing. I finally decided to get up and shower. When I got out and dressed, I went over to lay back down. As I stood by the bed, I heard a clicking-like sound coming from Clayton from under his pillow. I lifted the pillow and noticed he was in a position almost like he was throwing up which combined with the sound led me to quickly turn on the light. I knew something was wrong when I did. I noticed his eyes first. The best way I can describe it is that they weren't really "there". Then I saw his lips were blue and he didn't appear to be "alert" in any way. You know that moment where you notice your child is choking on a piece of food? This was well beyond that moment. I rolled him over and hollered at George that something was wrong. George scooped him up in a flash and I swear walked off the bed. George stood for a second holding him banging on his back, paced for second and then rushed to the cool air of the garage as he remembered that it can soothe constricted airways. I rushed trying to find a phone to call 911. All the while we were both screaming in the confusion of not knowing what was going on. I remember George kept repeating, "no, no, no". I remember hearing that and thinking "Oh no, we did not get through the last year to lose our child like this." I kept yelling, "anything?", and George kept yelling at me to call 911 as he was banging on Clayton's back and I was on the phone with 911 in hysterics telling them to "come right now." The guy kept asking me all these questions and I couldn't answer them and focus on Clayton. I just started screaming at the guy to "stop asking me all the f*#%$&@ questions and send them NOW". How the hell are you suppose to focus in your child whose in peril and listen to the 911 operator? As far as George and I go, our child in peril and sanity do not go together. I just started hollering at the guy that these questions were ridiculous. He hadn't even asked my address. So I just called it out and again told him to "send them now". Then I hung up. He called back. More questions. Meanwhile George was trying to revive him any way he could. There were times he wasn't sure if he was starting to breathe again and he was trying to relay this to me and me to the operator and I was trying to watch Clayton. It was a mess. There is no way to describe the flood of emotions George and I felt waiting for signs of life from Clayton. And for two people that know CPR, it was not the first thing that came to mind. It seemed to make more sense to bang on his back. Maybe that was because we wondered if he had choked on mucus. What seemed like a lifetime was I'm sure only a few minutes. After some frantic efforts, we got him to slowly start breathing again. There was no gasping for air, it was just a slow recovery. His color got a little better and then an officer and a fireman showed up. We laid Clayton on the couch and sat with him as we explained the situation. After the paramedics got there, we went to Thomas.
We still had no idea what the hell had just happened. Clayton had never done anything like this and despite everything that we have been through with him, we have never felt the need to call 911 before. This had been bad. Was this some kind of choking or a seizure? At this point it was still only about 7:00 in the morning.
Long story short for the next couple of hours, Clayton's O2 stats were slow to recover which continued to worry us. Even with the blow bi in his face, his stats were only in the 80s; that isn't normal. Eventually they made their way back into the 90's and we were left to figure out what had happened.
A few hours at Thomas and then they transferred us to USACW. The consensus seems to be that 1.) he has the flu type A 2.) he was having serious mucus secretions before the episode 3.) his air passages might have been slightly constricted in a croup-like manner and 4.) he had a significant spike in temperature in a short amount of time. All of these things almost became our "perfect storm". The flu caused mucus secretions and a tight air way and fevers. Lots of mucus can't fit well through a tight passage. They believe the significant spike in temperature caused a febrile seizure making him go rigid, which combined with the other symptoms led him to essentially choke. The odds that all of the things would come together and hurt my child? Figures. What if I had taken a little longer shower? Or gone to the kitchen after for a drink?
I thought that all of the worrying I have had to do about losing Clayton this past year would have prepared me in some way if losing him ever truly flashed before my eyes...it didn't. Seeing this was different. I watched my great grandmother take her last breath and I can tell you that the two things are nothing alike. Seeing someone who has led a full life leave this world is not pleasant, but there is a peace knowing they are better off where they are going. Seeing your child, whose time should not be up, lifeless is torture. George and I had probably three minutes in hell where we thought we had lost Clayton. We truly thought that was it. We were trying like hell to revive him and it didn't seem to be working. After getting through this past year, if I had lost him from flu symptoms, I would have then had some real anger issues. It was the worst few minutes of my life. I don't know if George and I will ever sleep peacefully again.
This means that Clayton has spent three out of his five Thanksgivings in a hospital. What a holiday. Hopefully we can go home tomorrow, eat some good food, get a Christmas tree, decorate for the holidays and I can watch Lifetime Christmas movies through the weekend.
Please pray for peace for those who have lost their children...especially those that have had to find their children in a helpless state. On a scale from 1 to 10, with 10 being passed away, I would say Clayton was at an 8. He is now sitting beside me breathing in and out and for that I am so thankful. Not everyone has this outcome. My heart aches for those that don't. For three minutes I felt a pain that I could have gone an entire lifetime without feeling. I hate it for all of those whose outcomes were not as fortunate as mine. There are a handful of parents out there that I know, who have experienced similar situations that have resulted in the loss of their child and they are constantly on my mind.
Be thankful for your kids. What happened to Clayton was in a way just bad luck. It could happen to any child. Children under 5 cannot regulate their body's temperature to ensure that it gradually increases. Therefore they can have sudden and significant temperature spikes that can cause febrile seizures. If your child has a history of croup like mine and is sick with lots of mucus, watch them closely. The doctor said that those severe temperature spikes can occur in the first 24 to 48 hours of being sick. So be careful!


November 22-25 

We ended up getting out of the hospital Thanksgiving afternoon. One more year missing family get togethers, but they were all kind enough to pack us up some good meals to go. Thank y'all for that! Since then we have just been getting Clayton over the flu. We let him play outside on his swing set for a little bit here and there because it makes him sooo happy. He has figured out how to go down the slide hands and head first. He just has to watch those landings...
We also got our Christmas tree which, we knew after last year would amuse him. He even insisted on putting on the first ornament while I was still working on lights and he picked out a star that has HOPE written on it. He insisted that it get centered and go at the top of the tree. He may not talk, but he makes sure you know when he is satisfied with something and when he is not. Good family time though during a much needed long weekend which technically started on Thanksgiving...which also happened to be the one year anniversary of Clayton's diagnosis.
What a year it has been. We have made it around the bend so to speak to the point of remission, but now the question is can we stay this way. We are thrilled he is in remission, some kids never make it this far, but many of those that do go into remission, relapse. I have had to toss so many ideas around in my head this past year in an effort to come to terms with this reality. There have been too many times I have have had to hold it together has I pondered what decisions I might be forced to make and what to do if I lose Clayton. In July, I met a woman that her son was diagnosed with neuroblastoma, went into remission, relapsed and then they decided not to treat it. They knew the details and they made the decision best for them. I remember being angry, thinking how could they just give up. Funny how things change in just a few months; I am now wiser. If Clayton ever does relapse, I am now prepared to evaluate the situation and make necessary decisions...and as hard as it may be, I am also prepared to say no to treatment and yes to living what time he does have if that seems like the right choice given the circumstances. I have learned enough and heard enough and seen enough now to feel confident that I am as ready as I will ever be to know when to say enough is enough. I don't mean to sound hopeless, rather, I have accepted that this is part of my life. I have had to educate myself and prepare myself to be able to make a smart decision about these things. I say a smart decision, because there is no easy decision and there is no right or wrong. I live in the weeks and months between scans and treatment and I live it knowing that at almost any time I could hear something that will forever change my life and mean I have to decide my son's future. I hope he never relapses and I never have to worry about any of that, but if I do, I feel like I am now in the best place I can expect to be in to make whatever decisions need to be made. Unfortunately, this is a nasty cancer and you just never know. I just heard that one child who has been clear for years has just relapsed and then of course there is sweet Matthew who has never made it to remission. It is a cruel world. Clayton has managed to fall in the 30% who make it to remission, and now we have to beat the odds of relapse.
I have this naive sense that things in life should be fair and even though I know better, it is hard to shake that notion. The truth is though life isn't fair. Good people get hurt and suffer everyday. Innocent children are chosen to fight battles they don't deserve. I know this and yet, I have a hard time accepting it. And in this unfair world, if you are one of the people that is fortunate enough to see the light through the darkness, then those moments of light are what you cling to. Maybe it is a DIY project or a trip in the woods or a Make-a-Wish trip to Disney World. I know I try to seize my moments of light. I long for the people that bring me happiness and want to limit my time with the "other" people. I crave the moments I get to have a quiet afternoon at home or do crafts and drink a few beers with a girlfriend. I live my life for my child and (almost) everything I do is for him. Sadly, I cannot make this world fair for him. I cannot make bad people good and I cannot make sick people well. I have to accept that I cannot fix the world as I desperately wish I could. I am just a girl from a small town in Alabama that is is in no position to fix anything, so instead I cling to my moments of light. Last weeks events have made me almost content to forgo any big dreams and instead just live a quiet life with my sweet baby soaking up every moment of the amazingness that surrounds him that I can. My life would not be complete without him. Before him, I was lost, still trying to figure things out and he saved me. Without him, I would be lost again, but I would be better for having had him in my life. A quiet life with him is all I want. I want peace and I want him....
Someone I know recently lost a child and my heart has been breaking for them. I have spent this last year living with the constant fear of losing Clayton and then to have a call as close as the one we had Wednesday morning just makes me so thankful for my child. It feels like the more thankful I am for my child, the more my heart breaks for this person. I got pretty upset about the whole thing. I almost felt crazy because I didn't really know the child, just the parent and yet still I was so upset about it and couldn't get it out of my mind. Given the past year, the whole thing hit pretty close to home. And then, Wednesday morning made it all worse. I tried to describe the chaos from that morning, but the feelings from that day cannot be described. What I saw when I saw Clayton can not be justly detailed and the horrible nightmare that flashed before my eyes can't be retold. That morning, those things, it all just intensified my pain for all of those who suffer the loss of a child. I wish I could spare them their pain. I hate the idea of anyone losing a child especially someone I know and someone I understand to be such a devoted parent. Anyway, it just sucks. Please pray for anyone who ever has to go through the agony of losing a child.

Leaving all of my philisophical babble behind, we also found out that we will not be going to NYC this week for treatment. Clayton was HAMA positive, which worked out because they probably would have made us wait because of respiratory issues from the flu anyway. It also worked out because there is a chicken pox outbreak at the Ronald in NYC. We are content to stay far far away from that. I just hope all of the families up there are OK. Chicken pox can be very dangerous to children with compromised immune systems. Just getting pumped up for our Make-a-Wish trip now!

November 21, 2012

This week really sucks. I'll come back and update in a bit, but for now, Clayton is OK...

November 13, 2012

Weird few days. I spent a couple of days in a funk over stuff with Clayton's back and I guess I was feeling like too much of a Debbie Downer to post anything more than a few ramblings from the 9th. The sad, heart-wrenching things are going to go through my head whether I post them or not, but sometimes it seems that why should my stresses and worries be put out there to affect the moods of others. The good news is that in spite of my few days of being in a funk, there were some good times to be had.
Clayton has been doing wonderful at school and even had a play date last Monday with a friend from school. He is gaining some weight coming in at a solid 42 lbs now! He went to Angel Ride (briefly), turned 4, went birthday shopping and had his first bath since his diagnosis. My PaPaw brought a box of Satsumas by and Clayton just loved that...first thing he did was dump them out. I think they look like little pumpkins to him. Lots of smiles and fun times at home though!
I have also been spending some time on the website and graphics for The George Clayton Childhood Cancer Foundation. I was thrilled to finish up the logo over Veteran's day. (Why I chose to use a duck will one day be explained.)
Anyhow, here are some pictures from the past week or so...

November 9, 2012... a little belated

I am trying desperately to have a normal existence for the time being, but the idea of what we will have to do for Clayton's back looms over me like a bad storm. It is heart breaking imagining subjecting my child to a medieval-like contraption for two to four weeks. Wheelchair traction is not something that should be a part of a child's life, yet at the same time, I suppose I should be thankful for it's existence. Iswear, this life is a constant tug-of-war between being thankful for everything you have and being pissed off that your child has to deal with this stuff in the first place.
His back scares me so badly right now. I am scared of everything we are going to have to do, and I am scared of it getting worse while we have to wait to do anything. And wait we must, because that is what the oncologists have asked us to do. It is all a delicate balancing act.
I haven't even written about the fact that last weekend, Clayton had his first bath. I've hesitated because what was such a happy time for my sweet little man was also a sad moment for me. Since we haven't been able to bath him, we have not seen him in the buff very much for the past year (changing clothes happens so quickly) and while we knew his back got worse, really seeing it just hurt. I couldn't help crying as I watched him start splashing around for the first time in a year. He was so happy all he wanted to do was splash and I couldn't get past how bad his curve now looked. I had to walk away just to have a minute to get myself together. I wanted to scream and punch something and get pissed off and everything all at once. It just hurts inside; it hurts so damn bad. To want to spare something so sweet any harm and to want to fix them and knowing you can do neither and so you are left feeling helpless is a horrible feeling. There are days when the weight of that reality means that it takes everything just to put it all aside and pretend everything is OK. My sweet sweet boy does not deserve all that he has been given to endure. There are days when knowing that he needs me is the only thing that pushes me to wake up, put my feet on the floor and get out of bed. Being that this is our reality that we live everyday, we in some ways become numb and are able to live our lives as though things are OK, but then there are those days that sneak up on you when it takes everything you have to focus on whatever the day holds and not dwell on things.
There are so many times I wonder if I made the wrong decision at some point along the way. Could I have done something to keep things from getting where they are? But I know that I did the best I could with what I had. I was a 22 to 25 year girl trying to make decisions that were well beyond my years. I just hope that I did the best I could for Clayton. And the thing I worry most if I could have done something more about is his back. Did George and I follow the right doctor? What's done is done and there is nothing I can do about it now, but I still think about it.
Sorry for the random ramblings of a cancer mom... Lots of things constantly running through my mind.

November 5, 2012

It has been four years of crazy since my amazing wonderful child came into the world. He was unexpected and so was everything about him. It has been four years filled with one battle after another. Every tear, every ache, every everything was 100% worth every decision made along the way. Because all of "that" led to this beautiful life with an amazing little boy that I will spend the rest of my life trying to be worthy of. Not many people know this, but at 14 weeks into my pregnancy, the doctors asked George and I if we would want to terminate the pregnancy because there had been a complication that the doctors then said meant an increased chance that our child could have down syndrome. Obviously we chose not to terminate and as it turns out, he doesn't have down syndrome, but we have our own share of special.
Everything has been worth it, every step of the way. Everything. Clayton is so perfect and beautiful it is crazy. I hate the pain that our family goes through with his health issues and I wish I could shield him from it, but I would gladly take all of this pain and this hardship over and over again just to spend a day with my beautiful boy. He makes George and I better people and we are beyond grateful for him.

HAPPY 4th BIRTHDAY CLAYTON!