October 31, 2012

October 30, 2012

Still here. Just been crazy busy with work and the house and trying to plan Clayton's birthday at the last minute. Things are going good though! I'll do a big post sometime this week to catch everyone up...

November 4, 2012

This post was somehow misplaced...

I'm beyond conflicted right now. On the one hand we just had a great Halloween with our little courageous lion, yet on the other hand, I am sad about the future. Clayton will be 4 tomorrow and thus far we have battled kidney disease and cancer, but the war is yet to be won. Instead, as his impromptu 4th birthday celebration began today, I received a phone call from the orthopedic surgeon in NYC. He was able to review Clayton's scans and he feels the best thing for Clayton will be for him to receive treatment at the Texas Scottish Rite Hospital for Orthopedics. There is a doctor there that Dr. Boachie in NYC has worked closely with before and he feels that he would be qualified to oversee Clayton's care. Dr. Boachie expressed his concern taking Clayton on as a patient given how often he is out of the country. Dr. Boachie will also be retiring in the next few years and wants Clayton to have someone who will be able to follow him from beginning to end. The good news is that it is amazing to have doctors who are so devoted that they study your child's scans and call you on a Sunday. The bad news is...Texas. Our lives will no longer be split between just NYC and Alabama, but we will now be throwing Texas into the mix...Dallas to be precise. I always knew I wanted to see the world and give my child the world, but this was never how I meant for those things to come to pass. As I've said before, my experience has taught me prayers should be specific.
One of the things I see frequently throughout all of this, is the difference in my faith verses many of those around me. I believe in God. I rarely go to church, but I believe in God and I have faith. I believe in the same fundamental Christian beliefs that all Christians do, but I am not the kind of person that talks a whole lot about it. My spiritual beliefs are held close and very personal to me and not something I share often. You won't find me saying things like, "I am witnessing the awe-inspiring power and healing of our Lord." There of course is nothing in the world wrong with speaking about things like that, it has just never come natural to me. I read so many of the testimonies of other moms for whom it does come so natural and I can't help, but wonder if I am just a bad Christian. Am I inadequate as a Christian? Would my child be better served by someone who is more devoted than I am? Does my child deserve someone who is a better Christian? There are times where I have been careful not to pray too hard, because if I lost my son I didn't want to hate God; it was like I felt not praying too hard would mean I would only blame the science. The reality, I know, is that it doesn't matter, because if I ever lose Clayton I will ask why. I will ask God why? I will ask why there aren't more advances in science to prevent families from feeling that kind of pain? Losing Clayton would mean lots and lots of why's.
I already ask why and have a hard time making sense of it. Everyday I watch the sweetest most innocent thing in this world battle one thing after another knowing it isn't fair that he should have to carry these burdens when there are so many bad people out there who quite frankly probably deserve this hell. I'm sure that makes me a bad Christian to say that, but it is what it is. It is so hard to make sense of my sweet little baby-angel suffering through all he goes through when there are rapists and child molesters out there walking free and biding their time in prison. Why can't those men suffer these trials? Why can't rapists be sentenced to living a life with severe scoliosis that will continue to get worse until they are so hunched over all they can see are their feet? Why can't we take the cancer from the innocent and give it to the child molesters so that they can suffer until the cancer rids this world of their miserable dirty souls?
There are probably some people out there thinking, "wow, this girl is crazy!". Or maybe that I'm not a good Christian, or maybe that I should seek help, and I imagine there are at least a few of you (maybe more) who are right there with me. But please understand that it is hard for me to see the bad rewarded (or at least not punished) when I see the innocent suffer so much.
Let me follow the above with this: George told me he thinks I am harboring too much anger these days. I know he's right, but it is a product of the life I am living and it isn't something I can't just snap my fingers and change. With everything that George and I see, I hate watching how unfair this world is. I know that fair was never promised, but that doesn't mean that it many areas it cant be achieved. It seems that not enough people are out there fighting for fair these days. In a world where children are going to get cancer and there isn't anything that can be done because that is the way it is, you would think that more people would stand up to fight for what is fair everyday...to fight for what they can change...but they don't. And that makes me angry.
It isn't fair that our family and so many others have to suffer the trials of childhood cancer like we do.  It pisses me off that on top of cancer, Clayton has the kidney disease and scoliosis that he has. Shouldn't just one of those issues be enough? Apparently not. And that isn't fair and makes me angry.
This isn't a life someone grows up dreaming about and even though I hate that we were chosen to go through these things, that is the one thing that I at least understand a little bit. You see George is a very patient man and devoted to his family. He will sit by Clayton's side in that hospital and never think twice. He isn't going to walk away because things get too tough with all of this. And I can be ...shall we say, scrappy. And if there is one thing you really really need when you have a child with cancer, it is to have some fight in you. My baby needed a parent that would fight like hell and he got it. It is both my best and worst quality. George and I complement each other well in all of this. There is that perfect point where George's passive and my aggressive come together to fight cancer and I am sure that has something to do with why our child was chosen to carry these burdens. Before Clayton was even in this world, God had already armed George and I with the tools we would need to fight for our child and be there for him. But despite knowing all of this, it does not change the fact that it still just pisses me off that he has to suffer this at all.
It makes me angry that the end always seems out of reach. You can't hardly be relieved to be through one hurdle before you have to jump over the next one.
And I'll tell you what really makes my blood boil these days is listening to these dumb politicians. I'm sorry Mr. Obama, but my family is in that poor to middle class range that you claim to be doing so much for and you haven't done crap for us, so stop claiming you have. Our tax return last year was the smallest it has ever been and it wasn't because we were making more money...because we weren't.  We can't even refinance our house in part because of your policies that you claim are doing so much good. And our child is one of those that you claim would benefit from your Obama-Care and disability initiatives. I call bull shit. The only thing that we can benefit from is the doing away of the pre-existing conditions. Otherwise Mr. Obama, I would love for you to tell me why my child who has cancer, kidney disease, 48 degree scoliosis and 68 degree kyphosis isn't eligible for Medicaid. The crazy thing is that we have other insurance. Our family's primary insurance is BCBS of Alabama and we only need the Medicaid as a secondary insurance to help keep medical bills under control. Do you hear that Mr. Obama? We are hard working Americans trying to work hard to better ourselves and be productive members of society. We spend everyday trying to make sure that in addition to being good people, we are helping ourselves and yet rather than our government providing that extra little help with a secondary insurance for our innocent child who has never done anything wrong in his life, our government would rather waste money redistributing wealth to those that are too lazy to help themselves. 47% may not have been accurate, but Romney was on to something. Good for Romney for having the courage to stand up and say lets stop rewarding those that don't try and don't care and start rewarding those that do try and do care. Our government is throwing taxpayer money away on people who just don't care rather than investing it in children and people who are trying to better themselves. And all of that pisses me off.
But what irritates me the most about all of it is the lack of good men willing to stand up for the greater good. Why are people so scared to stand up for what is right? And it isn't just other people that I am disappointed in, it is myself. Despite everything I feel and everything I am going through, I find myself eager to forget the pain and forget what needs to be done and just throw myself into my hobbies instead and try and block out the bad. But that's the problem. What if people would stop being so lazy and selfish? Imagine what we could accomplish. It truly would be amazing. And of course there are already many many of these amazing people out there, just not enough. There is strength in numbers and power in people standing together, but if people can't stand together, then everything will fall apart and we are definitely witnessing a lot of that these days. And before anyone asks themselves why I keep harping on so much about government, let me tell you, government has a lot to do with research funding among other things. A lack of good government can and does slow the advancement of medicine. Like so many other things, advancements in the medical community start with good government. It means the difference in 1 cent per dollar in funding verses 10 cents per dollar. It means the difference in treatments that are FDA approved and available nationwide verses those that are only available in one place. It means the difference in life and loss for too many. So we need strong men and women that are brave enough to fight for what's right and smart enough to know the difference.
It makes me angry that I want so desperately to make a difference and yet I wake up and go to bed every day as a nobody that has yet to become a somebody that can make a substantial difference. It makes me mad that I fear that too many of the wrong people are going into politics and not enough of the right people. Those "wrong" people and their empty promises and selfish ways just irk me. It pretty much just pisses me off that I feel like I can't fix anything. I feel like there is so much that is broken or sick or in need of healing and I can't do a damn thing and I just stinking hate that.

Sorry for the rant, but this is why I'm mad and this is what's on my mind right now. These things affect my sweet baby and Matthew and Abigail and Lily and Justin...these things affect everyone. I hope Americans can elect leaders that will give them the hope and change that is really needed. I hope people can see the bigger picture and recognize just how far the effects of every decision they make will reach. I hope that they can see that if we start with change in our government we can do anything. We can make things better, it just takes good men and women standing up for the greater good. And yes, the cure for childhood cancer in some ways starts with changing our government and it's support of childhood cancer.
Anyway, this is me...a little bit angry at the world, but still hopeful...

October 23, 2012

October 19th, 20th, 21st, 2012

I started writing this post on Friday, so it flows from Friday being the present to the past, but I just didn't change it. Anyway, here she blows...
Today stunk for various reasons, but I am sitting in the dining room of the Ronald waiting to meet up with another mom and it just makes me feel better. There are a group of kids from various families sitting to my left laughing and giggling. Then there is a dad and two of his kids sitting down on the right laughing at Tru TV. Everyone is just in their PJ's hanging out like their at home...because they kind of are. This place is so amazing. I have never been in a RMH that has such a sense of community. The regulars and semi regulars are all just family. At the end of a long day, it just makes everything a little better. And it was a long day...
For one reason or another, I just started having anxiety while Clayton was in surgery. It wasn't necessarily because of the surgery, just in general. Then I found out that there was a flub (otherwise known as a mistake) over at Make-a-Wish and so they have not yet scheduled a trip for us to go to Disney; which means it might not get to happen in November...they say definitely in December though. Not really sure what to think will happen yet.
Then the lady from the bank told me our refinancing/home improvement loan was not going to work out because the appraisal did not come back like she had anticipated. Why she anticipated that our home value would have grown nearly $60,000 in value in two and half years...in the middle of a recession...I don't know. So she flubbed too, but the good news is that the appraisal showed our home value has grown $1,000 since we bought it! It's the little things :). And since the loan to value ratio doesn't satisfy the bank, no refinancing for us.
Then all of the sedations, early mornings and odd schedules for Clayton meant that he was continuing to have some urine retention, so we were in he hospital from 6am Friday morning until 5:45pm Friday evening waiting on him to pee and when he didn't, we did yet another straight catheter. Way to end the trip.
And of course, my mother had left on Thursday and though my grandmother was coming up on Friday afternoon to help us get home Saturday, being alone always adds another level of anxiety.
The port placement and Hickman removal went great though and we got home safe on Saturday morning. BUT then we were sitting in the living room and George kept looking at Clayton and looking at me and finally said, "Is he missing a tooth?"
Huh? What the, how did that happen, holy crap. Sure enough, he was missing a tooth, and we have no idea what happened to it. I'm scared that I somehow did it fighting him to get his medicine down. I'm not sure how I would have done it, but it is driving me nuts not knowing what happened.
So it has been an interesting few days, but we are home, we don't have to go back for at least four weeks, he is happy and he is still NED!!! So tooth or no tooth, things are pretty good. Happy to be home and now it is on to party planning. Clayton's 4th birthday is November 5th and we want to give him an amazing party. Lots of brainstorming...

Oh and the cutest thing in the world, Sunday night we told in it was time for night night and he scooped up his pumpkin and crawled in bed. The next morning I had forgot about it and pulled the covers off of him trying to wake him up for school and there it was...

October 21, 2012

October 20, 2012

I'll try and do a big update Monday. It has been a long couple of days, but we are home again!

October 19, 2012

Please Pray...

I am absolutely heartbroken right now. Matthew's mom reported that the doctors told her there is no longer any hope of a "cure", rather any treatment would only be to prolong life. She and her husband are faced with gut-wrenching decisions about whatever time they have left. Their options are to either put him through a round of high dose chemo in conjunction with another therapy and a round of 3f8 in hopes of forcing the cancer to remain stable or to head home and pursue unconventional options while enjoying every day they have left with him.
I am sitting here in recovery with Clayton right now crying at the thought of this. I have been blessed with the opportunity to meet Matthew and his brother Dilynn and they are such a joy. Every time I see them I smile. So full of life, you would never know what evil lies beneath the surface. I cannot imagine his mother's pain, she and her husband are in the place we all pray to never have to be. It is not fair. I hurt so badly for them, but I know it is nothing compared to their own pain and that of their family. We saw them this morning getting prepped for surgery. Clayton had been screaming like crazy, while they where taking vitals and hooking him up to fluids and when we came out, there they were. Matthew had this semi-shocked look on his face and before I knew it, I just blurted out, "Don't worry Matthew, they weren't hurting him, I promise." I have know clue if that is what he was thinking or not, I just remember thinking I hated for him to be scared of what was to come because he had to sit there and listen to Clayton scream like a mad man. Because they did not hurt Clayton in any way...I promise. He just doesn't want them near him...understandably.
Please Pray for Matthew and his family and for his mother to find whatever peace she needs to get through this because I know she must be torn. So no matter what higher power you might believe in, please pray that Matthew's family will find the peace that they need from God to help them through this difficult time.

October 19, 2012... 6:53 am

We are at the hospital ready to say goodbye to the Hickman and hello Port!

October 18, 2012

October 18, 2012 Continued...

I just realized that I haven't posted pictures all week, so I'll go back and add those to the posts from the week.

The main reason for this added post was to tell everyone that we have some wonderful friends putting on an auction for Clayton in Daphne Friday night. So tomorrow, the 19th. Clayton and I will obviously not be able to make it, but George will be there. Thank you to our wonderful friends putting on the auction as well as to all of those who donated items.
For anyone who wants more information, you can find it on Facebook under "BIDDING FOR A BLESSING- Auction and Fundraiser for Clayton Ladd"

October 18, 2012

Let me do some quick catching up...
We had to wait at the hospital until 6:45 last night (Tuesday night) to be discharged. Before we could leave, they wanted Clayton to pee so they could then do a bladder scan and see what kind of residual urine was still in his bladder. He had a huge pee and soaked the bed that morning before his scans and then he didn't drink anything for hours, so there was nothing to pee for hours. We obviously cannot force him to drink or pee after he drinks, so it was a long day. The good news is that he did not have to have a catheter. After he peed and they did the scan it showed he had only around 109 cc's of residual urine, so they were ok with that. So no catheter! (To put that last statement in perspective, they have drained 1200 cc's from his bladder before)
We all got up this morning and headed out at 6:45 to get to the hospital because we were first on the list for an MRI. Early tests are the best; it means he can eat and drink sooner. They did the MRI and gave him a flu shot while he was under. Then, since the inpatient team didn't bag him for urine collection yesterday, the nurse asked me if I would be OK if she did a straight catheter while he was still under sedation. I agreed because it solved our problem of having to bag him and collect his urine and it answered the doctors' question of what kind of residual urine he had today. In the end every one was pleased with the outcome; and Clayton was none the wiser. Afterwards we met with the surgery team again and then did some x-rays and our day is done...our week is done...pretty much.
All of our scans are now behind us and all we have left is his port tomorrow morning. We are so excited about that. No more Hickman and he will get to ring in his 4th birthday with a bath! Two weeks from tomorrow, he can have his first bath since November 19, 2011! No, I'm not kidding. Super, super excited!
Hopefully we will have MIBG results tomorrow and then bone marrow results next week. After that, we have nothing! Nothing for at least three weeks. We will be starting his accutane (yes, the acne medicine; it matures neuroblastoma cells which is a good thing) either Saturday or Sunday. He will take that for the next six months doing cycles of two weeks on and two weeks off. And at some point we need to touch base with Dr. Terry again, but it doesn't have to be immediately. So we get a nice break at home. Just in time too, because we have back to back weeks of an anniversary, Halloween, Angel Ride and most importantly Clayton's Birthday!
I'll let everyone know how tomorrow goes...

October 17, 2012

October 17, 2012...UPDATED

Still waiting to find out the game plan, but I did find out that he was HAMA positive (as expected). This means we will not even be testing him again until the first week of November to see if he is HAMA positive or negative; so the soonest we would have to go back for treatment would be the second week of November...
Hopefully we'll know more soon...

So we have a game plan. I got to talk with the wonderful Dr. Michael La Quaglia and we figured things out. For starters, he said that the stint had not moved that much and he did not feel that there was a need to do anything with it. Second, he said that the hydronephrosis did not look that bad. Whatever additional hydronephrosis exists, is a product of reflux from the bladder not an obstruction with the stint. He strongly feels that the 3f8 antibodies can affect the bladder muscles as well as the fact that narcotics can weaken the bladder muscles. The combination of those two things and the timing of the scan seems to be the reason for the chaos. However we have it under control now. So we should be checking out of the hospital today and heading back to the Ronald. They are going to monitor him through the afternoon and do another bladder scan to see what things are looking like in there. If they feel he has more urine then they would like, then they might send us back to the Ronald with a catheter and they would then remove it on Friday. So we'll get through today and hopefully the rest of the week will continue on as scheduled.
A little clarity on the bladder issue though is this: the bladder is like a balloon and the more it is stretched out the weaker it becomes, so we need his bladder to void appropriately, so it can shrink back down and strengthen. We will also put him on some medicine that will help to strengthen his bladder.
In the end, we trust Dr. La Quaglia completely. We trust that if there was a need for urgency he would act ASAP. We have seen him in action and know this to be true. It is so amazing to have someone we can trust that way...wonderful wonderful man.

October 16, 2012

October 16, 2012

It is amazing how quickly plans change. I'm not even sure why plans exist; it is so rare that what is planned seems to come to be...at least for us. Yesterday our schedule for the week changed and all the tests got rearranged. Yesterday altogether was not the best start to the week. Then I woke up this morning scared to death because I had a dream and while I don't remember the details, I remember Clayton and lots of blood and urine. Which would make sense to anyone who knows Clayton's history; those that aren't familiar with his history probably just think I'm weird. So for anyone who doesn't believe in intuition and even premonitions, just wait...I'm not saying I had a premonition, but I knew something was wrong before I knew something was wrong...you know ?
We successfully completed some day clinic time, a CT and MIBG injection today and thought it was home free to the Ronald until tomorrow evening...and then...at 5:05 I got a call from the hospital. The radiologist had called Dr. Kushner after reviewing the CT and had some concerns that meant Dr. Kushner strongly recommended we come in. So we did. And we didn't get to leave. We are now inpatient. Hopefully this only lasts the night. While this doesn't concern blood and urine it does involve kidney and urine problems similar to those we saw when he had the blood in his urine. The CT showed a serious increase either in the size or fullness of Clayton's bladder indicating it is not fully draining. George and I kind of suspected this and this alone is not a huge deal as long as Clayton is still peeing the majority of it. The problem is that Clayton will hold onto his urine too long every now and again. So whatever the cause and effect going on inside his little body, he is not fully draining his bladder, the stint in his ureter has moved and his kidney is again showing hydronephrosis. Oh what fun!
So now we wait for a bladder scan this evening, most likely followed by a straight catheter (in and out). Then we wait for tomorrow to talk with Dr. La Quaglia. He might decide to do a cystoscopy when he places Clayton's port in order to see that things look OK in the bladder. It is also a sure (but yet to be confirmed) thing that they will at some point schedule the procedure to correct the placement of the stint.
Tomorrow will be a big day, lots of news to come. HAMA results, MIBG scan and results, decisions about his stint and decisions about his bladder...lots to do and lots to think about...
For now, I'm off to wait to do the straight catheter...but first a dose of dilaudid to ease his discomfort...oh great more dilaudid.
This is why I share the good times too, because who wants to be brought down by the bad all the time...

October 15, 2012

Well my mom and I made it to NYC Sunday afternoon for a week of testing. Clayton is notably withdrawn a bit. He wants to have both George and I with him. Just one of us doesn't seem to be sufficient. I guess he just feels safest with both of us. He gets like this when he is recovering from a treatment like the 3f8 or something tough. And last week it was just him and George because I was gone on a work thing for the week (that's why there were no posts) and this week of course will be me and Clayton doing scans. I think it will help a lot though once he realizes that he doesn't have to stay in the hospital and that he can play in the day clinic play room and the play room at the RMH. That aside everything is fine.
Our schedule got rearranged yesterday which isn't surprising, but means we won't have any idea how the MIBG looks until Thursday or Friday. Today we had a long day of meeting with all of the doctors and organizing all the premeds he has to have for the different tests. We should know today if he is HAMA positive or negative for the next round of 3f8 too.
More later...

My little prodigy...who seems to be missing the trees while we're in NYC

October 12, 2012

October 12, 2012

Many of the words and thoughts entering my head are not appropriate for this blog. So let me start with this, I write this blog to inform the people that care about my child. If you don't fit that category, quit reading. Secondly, I do not take kindly to bullying. That said, here is a part of our story we have never elaborated on, that has recently been called into question by one person...
When my child was diagnosed with cancer, George and I didn't know what we were going to do. We debated whether we would have to let our house go into foreclosure or try and sell it and move into one of my parent's houses. We didn't know if I would have to quite work or what to tell them. We had no idea what to expect and no idea where things were headed. However, we were so blessed to find ourselves surrounded by so many amazing coworkers and supervisors who stood behind us and our child and the fight we had ahead. For months they have rallied around us to show their support and it has been amazing. When our world was dangerous and unsure, our coworkers were there to be the security blanket that helped us feel safe. The most amazing part, is that our family isn't special, our coworkers would have done that for any of their fellow coworkers, because that is how amazing they are. During the past few months, we have witnessed similar shows of support for other families experiencing unexpected hardships. It is an amazing thing to be a part of a group of people that treat each other that way.
For the past almost eleven months, our family has been beaten and bruised by cancer. We have been covered in a cloak of darkness never knowing what might be coming next. Our coworkers have been a huge part of the light that shines through to let us know tomorrow will come and so will the day after that. I cannot tell you how much I love to go to work with the ladies I work with. Even on the hard days we make each other laugh and it rocks. They work extra hard on the days I'm not there and they don't complain about it. I know George feels the same way about the guys he works with too- not to mention those guys are amazing to me and Clayton. And it isn't just the people we work with directly everyday, it is the people we pass in the hall or have to call on the phone or the ones that I find a reason to sneak back to their office just to say hey for a minute. It is the ones that we have never met and don't even know us. All of these people have been a part of our light. I am not good with expressing my feelings, but if I were, I would be thanking all of these people every day. Every. Single. Day. Really, my not being good with expressing my feelings is no excuse and for that I apologize. I apologize if I do not express the level of gratitude that these people deserve.
Recently, one person decided they did not like that our coworkers were there for us the way they have been and that we were going to New York taking road trips instead of being at work. At first I was furious, and George just told me "don't let one sour apple get to you." I took a few minutes and composed myself trying desperately not to jump to conclusions or make assumptions about the kind of person this person must be to make such an accusation. The idea that someone could complain about us having one or two days of fun on the WEEKEND hurt. We have spent the last 11 months in hell and trying to say we shouldn't have a couple of days of fun on the WEEKEND while we are in NYC...Where do they get off? So I hope that person is reading, because I would like to point out some things on this post:
On November 22, I found out that there was a good chance that the light of my life might die. A 70% chance that my sweet baby might die, that is what George and I have been faced with. Now, if you knew there was a 70% chance you or your child might die, what would you do? God gave me a choice, I could spend my days living in the darkness of our circumstances or I could chose to help myself, help my family, get off my lazy butt, stop wallowing in self pity and do something. And at some point through the shock, the anger, the fear and the treatment, I chose to do something. Something for me and something for my family. I decided I would try and make the most of what I could no matter what. I didn't know how much time I might have with my child and I didn't know if whatever time I had would be spent in a hospital. So I decided I was going to make any memories with my child I could. I was going to get my family out of the hospital and out of the Ronald McDonald house and our house and we were going to laugh and play and make the most of our time whether that turned out to be nine months, three years or decades. I decided I was going to remember SUNDAY July 22, 2012 as the day that my sweet sweet boy dipped his toes in the Atlantic ocean, not another day in the recovery of two weeks filled with 14 rounds of radiation and five days of low dose chemo, followed by an overnight stay because he wasn't holding his oxygen after being sedated everyday for seven days. I decided that I was going to remember SUNDAY September 30, 2012 as the day that Clayton ran around in a pumpkin patch smiling and George and I picked apples right off the tree and ate them right in the middle of the orchard rather than to remember that day for being the day that we checked in the hospital to start a week of torturing our child. The same way I am going to remember today as a day I passed a test that will aid me in my future career endeavors and the day that I had a beautiful drive home from Tuscaloosa, AL with a coworker, it will not be a day that I remember for the actions of the person who inspired this post or the fact that when I got home the AC was broken and a short while later Clayton threw up all down my back and all I could think is "oh God, are there tumors growing." You see I made a conscious decision to remember the good. But to do that I have to make opportunities for the good; and so when I can, I do.
In this world, I am surrounded by heartache and pain. When we are in New York we stay in a hospital on the same floor where children have died after their grueling battles with cancer. We live in the Ronald McDonald house amongst kids whose bodies are riddled with cancer and I pray everyday I will see them walk by just so I know they are OK. It is necessary to get out and try and free our minds from time to time and what we do in our personal time on the weekends is our business. I only share those experiences so that those people that care about Clayton can see him enjoying himself rather than enduring some kind of treatment yet again. I have four grandparents at home, George and I both have sisters there, aunts and uncles and cousins and even if no one else cares how Clayton is doing on his good days, they do. So if not for anyone else, I do it for them. But there are many other people that care as well and so I do it for all of them...and for me and George.
And as for how wrong this person was in their accusations, let me lay it out for them if they are still reading:
I had no idea how I was going to keep working when this all started, but the wonderful people George and I work with made that a possibility. I have had to be in and out over the past 11 months and I think it is shameful that this person would suggest that either George or myself would take advantage of the kindness of our coworkers by abusing their generosity. We would never dare. In fact it is quite the opposite. George and I constantly feel guilty and wish we could repay their kindness. We have always been open and forthright and willing to do whatever we needed to do for things to work out. And every step of the way we did as we were told. What we wouldn't give to not be in this situation at all. But we are and every week day our child is not in the hospital, George and I are at work. When we fly home on a Sunday after a couple of weeks in New York, we are at work on Monday morning. And as much as I love my job, you can bet I would love to be home recouping from our trip from time to time, but I roll my behind out of bed the next morning and go to work. George spent three weeks at home so he could work while Clayton and I were in NYC during which time Clayton had a surgery and was in the hospital recovering from his hemorrhagic cystitis. Can you imagine how hard it was for George to watch his son get med-flighted away not knowing what was going to happen or when he would see him again? My mother is traveling with me to NYC next week so that George can stay here and work. When Clayton was in the hospital in Mobile, either George or myself was always at work and after a while, our mothers would drive over at 5:30 in the morning, so George and I could both go to work. Our mothers have sacrificed their time to sit with Clayton during the week days throughout this process so that we could work. George and I have done everything we can to show the utmost respect to our employer and our coworkers for their kindness and understanding. If one or both of us could be there, then we were. And yes, I seriously considered quitting my job a few times because I feared I would hate myself if my child died and I spent his healthy days away from him. But I didn't quit. I stayed because we are a two income family. I stayed out of respect for the coworkers that'd reached out to help us. I stayed out of respect for the supervisor that took a chance hiring me before all of this. I stayed for the sacrifices that those who work with me have made in my absence. I stayed because I love my job and I want my job. What I never did though was abuse people's generosity and I resent that implication made by this person. Not only have we sacrificed throughout this ordeal, in order for us to be at work, but our families have sacrificed as well. So for someone to act as though we are being irresponsible or selfish just rubs me the wrong way.
So as an FYI for that person here are the details of our excursion:
First of all, we had to report to the hospital to check in for an inpatient stay by 7pm SUNDAY September, 30, 2012; we decided to fly to NYC on SATURDAY September 29, 2012 so that we could spend the day SUNDAY taking a road trip in the country. Our extracurricular activities were all done on the WEEKEND during a time that George and I would not be at work no matter where we were. Our flight arrangements for that trip did not take place on a work day so it makes no difference as far as work goes whether we flew up on a SATURDAY or a SUNDAY. We had to spend the money to fly up there no matter what and so we chose to make the most of it. So let me sum it up...our trip apple picking can in no way be tied to anything with our jobs, it was something we did on a WEEKEND and has no relation to our time spent at work. The one other road trip we took while in NYC was also taken on a SUNDAY. Aside from those two excursions, we have had no vacations, we have had little fun and a lot of hell. We're trying to make the most out of what we can, rather than crawling in a dark hole and crying about it.
On this last trip to NYC I met a mother who has been doing this for 7 years with her son. They are from South Africa. She told me a story how back at home she went to the baseball park with her son and another mother saw her son and said to him,"So you can't go to school, but you can come to the baseball park, huh." Let's just say the mother I met had some choice words for the mother from the story. How dare she? Her son would give anything to go to school and to be healthy. How dare that woman pass judgement on her child.
It is funny how much that situation parallels this one. Don't mess with our kids. Don't mess with our attempts to take advantage of a beautiful day because there are few beautiful days we get to enjoy. We are like momma bears that aren't in the mood to be poked.
Now I am going to move past this, but if this person is out there...I am trying to live my life and I hope you will try and live yours and leave my family out of it.

October 8, 2012

October 8, 2012

Let me catch everyone up. We got out of the hospital Saturday afternoon. The only catch was they wanted us to check his hemoglobin at the clinic Monday morning because it was almost low enough for a transfusion.
Conveniently, Clayton also started sleeping soundly Saturday morning around 10 am. He had another restless night, but from 10 am through most of the rest of the day he slept and slept. The only hiccup we had was that he had a croup episode and we can't give him a steroid medicine, so we just had to hope the old school steam and cold air tricks worked. They did...this time. He woke up good as new the next morning.
Sunday was a huge misfire. We decided to see how Clayton would act if we tried to go for a drive out of the city. As luck would have it he did great when we left; he even got comfy and fell asleep. So we kept going. Then he started singing a different tune. Once we got back to the city we ended up getting stuck in massive traffic from bridge construction, etc. Long story short, that excursion didn't turn out near as we'll as last Sunday. It was somewhat expected though since Clayton is being weened from the dilaudid.

Boarding plane now, be home this afternoon!

...more later...

October 6, 2012

October 5, 2012

It has been a long week. The treatment itself we were prepared to handle, but it is the around the clock restlessness, that there is no preparing for. Monday was his best night, which is saying something since he still woke up at least three times during the night. Tuesday was a downhill slope with him either just waking up throughout the night or being constantly restless. Wednesday he did not sleep at all! It was miserable for everyone; us, Clayton, our roommate, everyone. Thursday was no better. None. By this point we were all sleep deprived and grouchy. The days and nights all just sucked. The best part was that our roommate was discharged so we no longer had to feel bad for Clayton's 24 hour restlessness and any commotion it was causing. We tried desperately to adjust medicines to try and find a better combination for Clayton, but medication is not one size fits all, so figuring that out is a pain! A pain I tell you! At the end of the day we were too exhausted and irritated for the trial and error process and just wanted a solution...that of course would be to easy.
Friday came and we got another roommate this time a one year old. Our room wasn't exactly peaceful before, but any sliver of peace that had remained was officially gone now...and then the mom was coughing, which made me feel just great. The last thing we need is to get sick. They have rules if the child is sick, and it is OK if a parent is sick and the child has a private room; the parent can just wear a mask around. But what do you do when the parent is sick and they share a room with another family? All I can say is the hospital should be glad that they paired them with us and not the family next door because that mother would be causing a stir. She would raise cane now if she even knew there was a sick person living next door to her child. It is a very touchy thing to have a sick person around children with cancer. There are some moms that will go wild. It is never good for these kids to be sick going through all these treatments, but it is of course a much bigger deal if you are dealing with a neutropenic child. Thankfully, we aren't neutropenic, we just don't have time to get sick. Getting sick can mean respiratory complications for a healthy child. Respiratory complications can in turn prevent a child from being sedated for scans that are due; which would mean scans would have to be postponed...kind of like the scans we are doing the week of the 15th. You see where I'm going with this? With cancer and the schedules it requires, everything is a domino effect. I'm not going to go wild about somebody being sick unless Clayton is neutropenic, but I do think it's rude to expose your sick germs to this environment. It is a courtesy to make people aware that you are sick and take the proper precautions. It's just the world we live in.
Anyhow, we are done with the inpatient high dose 3f8, so all future 3f8 treatments will be outpatient and just the standard dose. Yay! The 3f8 nurses, the neuroblastoma doctors, George and myself all believe that Clayton will most likely be HAMA positive again, so his next treatment will be postponed. We'll see.
Just waiting to get discharged tomorrow. We tried to argue our case to get discharged tonight, but no luck. We didn't really figure we would get anywhere, but it was worth a shot.

October 5, 2012

October 5, 2012

Finished 3f8, but had some sleepless days and nights, so I'll come back and update about Thursday and today a little later. For now, done with inpatient high dose 3f8 and looking forward to better days!

October 4, 2012

October 3, 2012

Well last night wasn't fun. Just like the last round, this round seems to be generating some very restless nights. I don't think Clayton went more than twenty minutes without stirring last night. Needless to say I'm beat.
Then one of the 3f8 nurses noticed his shirt was wet at the end of treatment and long story short, we discovered his Hickman had a crack in it. It felt like the end of an era. We have heard countless stories about kids having to have theirs replaced time and time again and we have managed to keep his for almost one full year. Oh well. After some debate on what to do, the surgical nurses repaired it and we are going to try and make it work for us until he gets his port October 19. However, once the Hickman was repaired we still have to wait 24 hours before using it, which meant that we had to stick him and do a peripheral IV.
The treatment itself is still in line with the first round so we are doing OK from that aspect. Just tired. Still waiting on Clayton to have a bowel movement, which I know might be TMI, but nothing now means lots of discomfort on the way, so it's a big deal.
I think that is it...
Oh on and unrelated note, something I found out today and that I am just ecstatic about and wanted to shout to the world is we got approved to refinance our mortgage! We have some home improvements that have needed to be done, but were not emergencies like our rotting issue we had a couple of months back. Well we didn't have the out of pocket money to do these, so I did some research, checked with the bank and we got approved to refinance our house and add in a small home improvement loan. The AWESOME part is that because our rate will be reduced by more than a point, we will be paying more than $100 less a month! And that is with the little bit extra to make those improvements! I apologize for sharing too much, if you can't tell, I am super proud of myself for working this whole thing out. I apparently am also juvenile saying that I am "super proud of myself "; I guess it is a good thing I didn't say I was "super duper proud of myself"...because I am.
Now that I have shown my age and just how tired I really am, I am going to sign off. If only I had something catchy to say like "Seacrest Out."
OK now I am really done because I am showing my inner dork not to mention just being lame. I'll just blame it on the exhaustion. ;)

October 3, 2012

October 2, 2012

3f8 day two wasn't horrible, given the situation. So far I would say that his reaction to treatment is falling in line with round one; both during the day and at night. So mentally we're prepared for what we are going through this time, but it is still exhausting and tiresome trying to find the right combinations of medicines to soothe him. The restless nights kicked my butt last time so as you can imagine, I am looking forward to that again. We are on top of the constipation thing though this time and are already giving him senna and colace before it gets as bad as it did last time. One less problem to combat at the end of this.
Clayton is once again champing it up. He handles everything so well. The intense pain has thankfully not lasted more than 15 minutes either day. After that we are left with hives, sporadic fevers and tongue swelling. We had forgotten about the tongue swelling. After last time, we got home and it looked like he had blisters on both sides of his tongue from chewing it when it was swollen. We are making sure he gets vistral and Benadryl around the clock this time, so hopefully it wont be so bad.
One thing we won't forget will be making sure that they give us our dilaudid to wean him off after we leave the hospital Saturday as well. We were telling the 3f8 nurses about that and they said, "You guys too?" Apparently we are not the only ones that has happened to, just last week that same thing happened to another family. Keep in mind that our beloved neuroblastoma team here at MSKCC are not the doctors that run the inpatient side of things. They are still our primary, but it is general peds doctors that oversee the day to day operations over here. Those doctors rotate a lot and I think it throws them off their game.
Anyway three more days to go...

October 1, 2012

We checked into the hospital last night, with Clayton still just as happy as could be. Since I would be staying the nights over week, George stayed the night last night. So here is a day in the life of how I started my morning and how George will be starting his the rest of the week:
6 am wake up, get ready, nothing glamorous here, just comfort clothes. Leave the Ronald and check out the sign by the elevator to see what's going on...Falling Leaves Ball...I hate we always miss fun stuff. They are really good about putting together activities for the families here. Oh well, time to leave.

Walk out of the RMH house towards 1st Ave,

Hit 1st Ave, then head south towards Hospital; about five blocks up.

Made it,

First things first, go straight to cafeteria to get us breakfast. They have the best bacon. Then it's upstairs to M9 where George is already up, but Clayton is still sleeping.

George leaves to go clean up and Clayton wakes up almost immediately. Even in the hospital though, he wakes up in a good mood. He like me enjoys the views in our nice new room.

No roommate right now, so we have the run of the place. The next few hours are spent pacifying Clayton until the nurse comes in to give him his shot. (Shots are one of the things I forgot to mention on my post about our life with cancer; we would have to give him a shot like everyday for two weeks; shots and mouth sores and mucusitis, things come to me randomly). Anyhow, we give him his shot and then the nurse returns with his premeds. He gets vistral and Benadryl, Tylenol and a dose of dilaudid. Then we wait. The premeds have put Clayton into a groggy...and grouchy state of mind already.

 They usually premed the kids an hour before treatment, so we just wait and see. Finally around 12:15ish, Lea one of the research/3f8 nurses shows up to get started. They rush around getting the blow-by and the nebulizer ready, make sure we have extra sterile water, hook him up to all of his lines and monitoring devices, gather up some hot packs and cold packs, read off the numbers and DOB on Clayton's ID bracelet and before we know it, the infusion has started.
It takes a few minutes to kick in, so everyone has time to assume their positions. I crawl in bed with Clayton; it is my "job" to hold him, try and make him feel safe, and hold the blow-by to ensure he is getting sufficient oxygen saturation. George stands behind me ready to rub cold packs or hot packs all over Clayton's body to help ease his discomfort; it is usually hot packs in the beginning and then cold packs to cool him off at the end of things. The dance therapist stands at the foot of the bed with her rain-maker stick and softly rolls it while she rubs Clayton's feet. The 3f8 nurses stand on the other side of the bed ready to access any emergency and to administer any pain rescues or extra doses of Benadryl. He already coughed a couple of times as part of an allergic reaction, so they break out the nebulizer. He doesn't like that. All of our eyes dart back and forth between Clayton and the monitor reading off his oxygen and heart rate. We are waiting for it to tell us what he doesn't; that it is coming, the pain. Sure enough, 15 minutes in, it starts; his heart rate spikes from the 130s to the 160s and keeps climbing. Everyone starts scrambling trying to figure out his cues to see what he wants and needs that he can't tell us. I follow him around with the blow-by as he thrashes from side to side and George trys to figure where Clayton wants the hot packs today to make him feel better. The nurses administer a couple of pain rescues to try and bring his heart rate down, which makes following him with the blow-by more of a chore, because more of the pain meds, means less oxygen saturation usually. We know the intense pain will pass, it is just how soon. One of the nurses goes towards the foot of the bed and cups Clayton's behind in her hands and starts moving his body in a way that simulates gently rocky. It seems to work for him. Ten minutes later, the intense pain seems to subside.
The infusion is over and now it is the flush. Clayton lays there grunting as he works through the residual pain. It might be more of a sporadic whimper. Everyone gradually disperses. Clayton continues to stay fairly irritable the rest of the afternoon and has George and I spending most of our time trying to soothe him. He still has hives and is a persistent scratcher. We also gained a roommate this evening; a 20 year old guy, unusual roommate for us. I feel bad for him. Finally, George heads to the RMH around 9 pm and I try to sleep with Clayton. Unfortunately, it took a little while before he seemed able to rest peacefully. We'll see how the night goes.
All in all, it wasn't horrible. Well it was, but we know it could have been worse, so we count our blessings. It was almost the same as last time, so at least we were able to be prepared for that mentally.
One day down...

October 2, 2012

September 29th and 30th, 2012

It took us no time at all to settle in and make a mess of our room (as usual).  George had a couple of tall boys and watched football, I planned our trip for today, and Clayton got to run around and play.  He even got to visit with Matthew and his brother Dilynn for a minute.
We got an early start today and were headed out of the city by 8 a.m.  We went up Riverside Drive on the west side of Manhattan and took the George Washington Bridge to the Palisades Parkway,

Then took the Palisades Parkway to RT 287 (New York Thruway),

Finally we got off at RT 17 South.  Loved it.  This place has my heart.  Maybe not this place particularly, but New England in general.  I just love it.  I've always been drawn to it.  All the farmhouses and red barns with silos and quintessential colonial homes.  Love it!!!

And the sweet little towns with their outdoor markets,

That brought us in Orange County which was home to the Town of Warwick which includes the Villages of Greenwood Lake, Florida and Warwick.  Online, I had found at least four or five orchards in Warwick, so we knew it was a sure thing.  I had looked and looked online trying to decide which orchard would be the best one to visit and I'm so happy I picked the orchard I did.  We ended up at Apple Ridge Orchards off of Jessup Road and it was perfect!  We stopped off at two other orchards that day, but just drove through and visited their stores.  Apple Ridge Orchards was a small, very authentic orchard that was perfect for us.  It was not anywhere near as crowded as the others (which was best with Clayton) and the experience hadn't been "over done".   We were able to pick apples,

check out the pumpkins,

And enjoy apple donuts and fresh, REAL apple cider...AMAZING,

All with a beautiful back drop,

 But Clayton's favorite part (aside from the pumpkins) might have been...the chicken!

He liked the chicken a lot!  I think the goat might have been feeling left out though,

As long as we did exactly what he wanted to do, he loved it.   He definitely has a good time running through the pumpkin patch.  He even fell down and head butted a pumpkin and started laughing at one point.  After we stocked up on apples, we headed out.  We decided to stop in a couple of other orchards we passed that we had decided against just to see...

 Pennings was definitely to commercialized and to crowded.  Maskers on the other hand was very authentic, it was just enormous and therefore also very crowded, but driving through Maskers was beautiful.

Yep, we definitely made the right choice.  Apple Ridge Orchards was much more low key and not as commercialized as Pennings and just not as big and crowded as Maskers.  I would highly recommend Maskers to a family with older kids though.  Well, as much as I would love to pretend I write a travel blog, let me wrap this up...
 From there we just took the scenic route back to the city, because we had to be back to give Clayton his shot and hopefully to avoid the influx of traffic coming back to the city on a Sunday evening.

And we're back...but it was a great day!