January 30, 2012
January 30, 2012
Today was no fun. We left the house at 8:40ish this morning and got home at 9 this evening. Long day...partly our fault, but mostly the hospital's fault...more on that later. We checked his labs today and he needed platelets and blood, so we did both transfusions this afternoon/evening. We also had him sedated so that they could do a good echo and EKG to check on his heart. It will probably be a few days before we know those results. I'll come back and update this post tomorrow with more details, but for now it's off to bed. Clayton is still doing great though! He got a little pissy with us thinking he was going "back" to the hospital, but all is now right with his world once again that he is home.
January 29, 2012
January 29, 2012
I know I promised pictures today, but I turned on CMT this morning and was listening to Eli Young Band's "Even If It Break Your Heart" about dreaming...
and Martina McBride's "I'm gonna Love You Through It"...
After seeing those videos and watching how various country artists recently visited St. Judes, I just needed to get this out. So bear with me today, because I have a couple of stories. The first story comes from another mother's blog and the other is the story of how everything has come full circle.
Top Children's Cancer Hospitals:
1. Children's Hospital Boston and Dana-Farber Cancer Institute
2. Children's Hospital of Philidelphia
3. St Jude's
4. Texas Children's Hospital
5. Cinccinatti Children's Hospital and Medical Center
6. Children's Hospital Los Angeles
7. Memorial Sloan Kettering Cancer Center
8. Seattle Children's Hospital
9. John Hopkin's Children's Center
10. Children's Hospital Colorado
Children's of Alabama (UAB) is #39
USACW is not listed but with some support, maybe they could be.
and Martina McBride's "I'm gonna Love You Through It"...
After seeing those videos and watching how various country artists recently visited St. Judes, I just needed to get this out. So bear with me today, because I have a couple of stories. The first story comes from another mother's blog and the other is the story of how everything has come full circle.
"Welcome to Holland"
By Emily Perl Kingsley, 1987.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
In an effort to be open with this blog, I'll admit that I had a good cry the first every time I read that. George and I both had plans before Clayton. We knew things we wanted to do and where we wanted to go even if we didn't know how we were going to get there. Then there was Clayton. From the beginning, we have never been able to "plan" anything about Clayton. He has seen his share of obstacles ever since he was a 14-week-old little being in my belly. Everything about him has always been a surprise, but never a regret. As Clayton has grown and things have settled over his three years, we had once again started to make plans. New plans. Plans that included hospitals "just in case" there were every any more issues. No big deal, it was relatively easy to rework some of our plans to include Clayton and work around potential needs. Plans that included adventure and fun and traveling (my passion) and hunting and fishing (George's passions).
Everyone knows what happened next... the c-word struck. On top of everything else, the one scenario we never considered had suddenly become our reality. But only momentarily did we let cancer limit us. You see cancer is our Holland. There was a time when I would have thought that the kidney disease Clayton was born with would have been our Holland, but it wasn't. All along it was cancer, kidney disease was just the opening act preparing us and equipping us with the tools we needed for this much bigger battle.
When we were going through the kidney issues when he was a baby, I formed The George Clayton Foundation. It was meant to help kids with kidney disease. I was younger, less experienced, a new mom and had a lot on my plate and needless to say it never went anywhere. But all these years, I held on to the name and kept it as a non-profit even though I wasn't doing anything with it. It was meant for this and I now know that. Like I said, cancer is our Holland, and becoming advocates for pediatric cancer is part of the beauty we would never have seen had our "plans" not been thwarted from the beginning. So this is the beginning of our new journey. So while we might always be somewhat limited, we still have options, we can still travel and do things and most importantly because of all of this, we are able to the the beauty somewhere like "Holland" has to offer.
All of that said, we plan on making the most of The George Clayton Foundation. I know that there are some fundraisers already being planned by others and we have lots of ideas of our own. So, the next year will be spent doing a lot of planning and research and then we hope to have lots of new and exciting things going on with The George Clayton Foundation in the future. The goal will be simple: to raise awareness for pediatric cancer and raise funds for research .
Additionally, we will try our hardest to raise awareness for ALL pediatric cancer research institutes. The word ALL is important. St. Jude's is so well known and recognizable that I think people fail to see how many other amazing institutes there are out there. The number one difference in St. Jude's and these other institutes isn't the quality of research, it is in the fact that St. Jude's will treat patients at no cost to their families. So it is important to remember various institutes when thinking about a cure for pediatric cancer. Some institutes focus on certain cancers more than others and sometimes it is just beneficial to have more people, from different places, with different backgrounds looking for answers. HERE is a list of institutes that have oncologists who specialize in Neuroblastoma and below is a list of the nation's top institutes for pediatric cancer.
1. Children's Hospital Boston and Dana-Farber Cancer Institute
2. Children's Hospital of Philidelphia
3. St Jude's
4. Texas Children's Hospital
5. Cinccinatti Children's Hospital and Medical Center
6. Children's Hospital Los Angeles
7. Memorial Sloan Kettering Cancer Center
8. Seattle Children's Hospital
9. John Hopkin's Children's Center
10. Children's Hospital Colorado
Children's of Alabama (UAB) is #39
USACW is not listed but with some support, maybe they could be.
January 28, 2012
January 28, 2012
We got a full week at home! Woo hoo! Now we are enjoying a beautiful weekend! Hoping the second half will be as peaceful as the first.
I am just in shock at how well Clayton has done so far with this last round of chemo. I was so worried about this round because the meds given with round three are particularly strong. So far his hearing still seems fine (selective hearing...typical), his creatine (used to monitor kidney function) is still showing great kidney function and though he had more nausea with this round, that too seems to have passed and he has had a great week. He has been up beat, happy and playing, not at all what we were expecting, but we'll take it. This week has felt almost normal. Well our old normal, because life with cancer is our new normal.
Monday we have a clinic visit and an echo. For the echo we have to put him to sleep with propofol (magic milk) in order to have him lay completely still. So Monday is a little more than a typical clinic visit, but he has not had any problems with propofol in the past. Keeping our fingers crossed that the echo on his heart reveals that there has either been no damage to his heart or that the damage is minimal. Any possible damage would be a side effect of rounds one and two of chemo. Since round four is the same meds as round one and two we have to find out how his heart is to see if we need to alter the dosage given.
I'll post some new pictures tomorrow and then update everyone on Monday!
-Still drinking from the sippie cup!
I am just in shock at how well Clayton has done so far with this last round of chemo. I was so worried about this round because the meds given with round three are particularly strong. So far his hearing still seems fine (selective hearing...typical), his creatine (used to monitor kidney function) is still showing great kidney function and though he had more nausea with this round, that too seems to have passed and he has had a great week. He has been up beat, happy and playing, not at all what we were expecting, but we'll take it. This week has felt almost normal. Well our old normal, because life with cancer is our new normal.
Monday we have a clinic visit and an echo. For the echo we have to put him to sleep with propofol (magic milk) in order to have him lay completely still. So Monday is a little more than a typical clinic visit, but he has not had any problems with propofol in the past. Keeping our fingers crossed that the echo on his heart reveals that there has either been no damage to his heart or that the damage is minimal. Any possible damage would be a side effect of rounds one and two of chemo. Since round four is the same meds as round one and two we have to find out how his heart is to see if we need to alter the dosage given.
I'll post some new pictures tomorrow and then update everyone on Monday!
-Still drinking from the sippie cup!
January 25, 2012
January 25, 2012
Sorry for the absence. We got home Sunday afternoon and things have been a little crazy between working and trying to get things caught up here at the house. You've never seen so much laundry...my washer and dryer are going to be worn slap out!
Sunday Clayton was still pretty nauseous. He actually threw up on George three times coming out of the hospital and on the ride home he seemed very lethargic. HOWEVER, that little man could not play fast enough once he got home. I tried to go lay him in his bed and he wasn't having it. He has been so happy and so playful. Mind you, he still seems to throw up once or so every evening and is a little nauseous in the morning too. AND he surprised us by drinking MILK from his SIPPIE CUP. Yes. He. Did. That was a huge accomplishment for us and it came out of nowhere! He is also eating like a champion. We are going for a high calorie diet so he doesn't lose weight and as long as he keeps it down he is doing awesome. Bring on hot dogs, cinnamon graham crackers and nutter butters!
Sunday Clayton was still pretty nauseous. He actually threw up on George three times coming out of the hospital and on the ride home he seemed very lethargic. HOWEVER, that little man could not play fast enough once he got home. I tried to go lay him in his bed and he wasn't having it. He has been so happy and so playful. Mind you, he still seems to throw up once or so every evening and is a little nauseous in the morning too. AND he surprised us by drinking MILK from his SIPPIE CUP. Yes. He. Did. That was a huge accomplishment for us and it came out of nowhere! He is also eating like a champion. We are going for a high calorie diet so he doesn't lose weight and as long as he keeps it down he is doing awesome. Bring on hot dogs, cinnamon graham crackers and nutter butters!
January 22, 2012
January 22, 2012...Thank you
To all of those who have expressed such an outpouring of love and support,
George and I continue to be humbled and amazed by the support system in which we have found ourselves. The kindness of friends and strangers has been completely overwhelming. So, whether you're a friend or a stranger, we hope this message reaches everyone.
We are so lucky, so blessed, and so fortunate to have the most amazing people loving and supporting us. We love to read everyone's messages and even though we may not always respond, at the end of every day, George and I are able to find comfort in those messages. Each act of kindness, whether for helping to put together Clayton's swing set for Christmas or organizing a raffle or rallying coworkers together to give lots of hospital goodies or cooking dinner or even raking our yard or trying to clean our house; nothing has gone unnoticed and nothing is without our deepest appreciation. I have not had the opportunity to write everyone individually and wouldn't even know everyone to write, but we thank you from the bottom of our hearts. Everyone's prayers, encouragement, and support give us the daily strength and courage to fight this fight.
To a rather large and amazing family at the City of Fairhope: We love y'all. All of y'all from each and every department. We have not had the pleasure of meeting most of you, but George and I can say and mean from the bottom of our hearts that our lives are better with y'all in it.
As I mentioned we are so fortunate to have our amazing friends and family. We've had friends open a benefit account for Clayton, while others have taken it upon themselves to do fundraisers. We are so appreciative of all of their support. We are aware that there are astronomical costs associated with cancer treatment and have no idea what we might end up with later. For that reason we feel so blessed to have such wonderful people thinking about that for us. We are also blessed to have AWESOME insurance. Seriously, the best of the best, so hopefully we won't be hit too hard. Since it is so hard for George and I to accept help for impending medical bills down the road, we have put a lot of thought into what we would like to do in terms of money raised by fundraisers and money donated to the benefit account. We have decided that all funds will go directly to the benefit account. If we end up needing help with our medical bills we will have the security of knowing that we do have that account thanks to the generosity of so many amazing people. However, if we do not need the funds or if we have any funds left over after paying for treatment costs, then we are going to donate that money to a pediatric cancer research fund. It is a cause that is ridiculously underfunded and now so very close to our hearts. READ MORE HERE. We have also talked about the fact that when all of this is said and done we are going to continue to advocate for pediatric cancer and try and organize fundraisers to help raise money for research.
George and I continue to be humbled and amazed by the support system in which we have found ourselves. The kindness of friends and strangers has been completely overwhelming. So, whether you're a friend or a stranger, we hope this message reaches everyone.
We are so lucky, so blessed, and so fortunate to have the most amazing people loving and supporting us. We love to read everyone's messages and even though we may not always respond, at the end of every day, George and I are able to find comfort in those messages. Each act of kindness, whether for helping to put together Clayton's swing set for Christmas or organizing a raffle or rallying coworkers together to give lots of hospital goodies or cooking dinner or even raking our yard or trying to clean our house; nothing has gone unnoticed and nothing is without our deepest appreciation. I have not had the opportunity to write everyone individually and wouldn't even know everyone to write, but we thank you from the bottom of our hearts. Everyone's prayers, encouragement, and support give us the daily strength and courage to fight this fight.
To a rather large and amazing family at the City of Fairhope: We love y'all. All of y'all from each and every department. We have not had the pleasure of meeting most of you, but George and I can say and mean from the bottom of our hearts that our lives are better with y'all in it.
As I mentioned we are so fortunate to have our amazing friends and family. We've had friends open a benefit account for Clayton, while others have taken it upon themselves to do fundraisers. We are so appreciative of all of their support. We are aware that there are astronomical costs associated with cancer treatment and have no idea what we might end up with later. For that reason we feel so blessed to have such wonderful people thinking about that for us. We are also blessed to have AWESOME insurance. Seriously, the best of the best, so hopefully we won't be hit too hard. Since it is so hard for George and I to accept help for impending medical bills down the road, we have put a lot of thought into what we would like to do in terms of money raised by fundraisers and money donated to the benefit account. We have decided that all funds will go directly to the benefit account. If we end up needing help with our medical bills we will have the security of knowing that we do have that account thanks to the generosity of so many amazing people. However, if we do not need the funds or if we have any funds left over after paying for treatment costs, then we are going to donate that money to a pediatric cancer research fund. It is a cause that is ridiculously underfunded and now so very close to our hearts. READ MORE HERE. We have also talked about the fact that when all of this is said and done we are going to continue to advocate for pediatric cancer and try and organize fundraisers to help raise money for research.
January 21, 2012
January 21, 2012
So maybe yesterday's post was done in frustration. It has been a long month and it would just be nice if a couple of our doctors and nurse practitioners weren't being so dang stubborn. I can say though that I was relieved that my mother and MIL saw just how stubborn the doctors and nurse practitioners were being yesterday (at least about one thing). Moving on...
Clayton is done with his "just-in-case" crash cart chemo for this round. All we have left is the other medicine tonight and then should be back home tomorrow. Fingers crossed!
I swear it feels like we don't have weekends anymore. We are usually in the hospital on the weekends and when we get discharged, we end up turning around and going to work. Then we either don't make it through a work week without going back in the hospital or we make it through the work week and end up in the hospital on Saturday. Please give us a weekend...PLEASE!
We are desperately longing for a beautiful day at home to just play with Clayton when he feels good and forget about neuroblastoma and doctors and hospitals and chemo and transplants and everything. Just for a little bit enjoy the pleasures we took for granted. Sit in the backyard, play on the swing set George and Jeremy put together, visit with friends, drink a beer, you know, normal things. Our poor dog is depressed, the cat is so desperate for us to come home that when we are there he has taken to sleeping on the pillow above our heads. We are hoping that things will work out for us to be home for a nice weekend at home next weekend. So once again...fingers crossed! But enough of my whining, on to fun things...
I mentioned a few days ago that I had been inspired by all of the kids in Birmingham. All of their families make t-shirts. I loved them. And one of the fun things is that most of the nurses wear the different kid's t-shirts instead of scrub tops, which is a super cute way of supporting all of the kids. So I started working on one up there and here is what I came up with:
Everyone who knows Clayton knows how much he loves Cars, so I tried to pay tribute to that. And the gold ribbon is for pediatric cancer. George and I are pretty tickled with it! More on plans for it soon!
Clayton is done with his "just-in-case" crash cart chemo for this round. All we have left is the other medicine tonight and then should be back home tomorrow. Fingers crossed!
I swear it feels like we don't have weekends anymore. We are usually in the hospital on the weekends and when we get discharged, we end up turning around and going to work. Then we either don't make it through a work week without going back in the hospital or we make it through the work week and end up in the hospital on Saturday. Please give us a weekend...PLEASE!
We are desperately longing for a beautiful day at home to just play with Clayton when he feels good and forget about neuroblastoma and doctors and hospitals and chemo and transplants and everything. Just for a little bit enjoy the pleasures we took for granted. Sit in the backyard, play on the swing set George and Jeremy put together, visit with friends, drink a beer, you know, normal things. Our poor dog is depressed, the cat is so desperate for us to come home that when we are there he has taken to sleeping on the pillow above our heads. We are hoping that things will work out for us to be home for a nice weekend at home next weekend. So once again...fingers crossed! But enough of my whining, on to fun things...
I mentioned a few days ago that I had been inspired by all of the kids in Birmingham. All of their families make t-shirts. I loved them. And one of the fun things is that most of the nurses wear the different kid's t-shirts instead of scrub tops, which is a super cute way of supporting all of the kids. So I started working on one up there and here is what I came up with:
January 20, 2012
January 20, 2012
I spent most of the day with knots in my stomach. So far chemo round three has been going OK as far as Clayton goes. He has been urinating good in order to flush out the chemo and we have easily been able to combat his nausea with meds. Here is where the knots come in: Dealing with the doctors and nurse practitioners has been a bit of a pain this month here at USACW.
The first issue was TPNs (IV nutrition); the doctors here are in favor of them, the doctors in Birmingham prefer methods that use the gut and we agree with the doctors in Birmingham because TPNs can cause liver problems with prolonged use so we would rather steer clear. Unfortunately, some of the professionals here have not been eager to accommodate our wishes. Bottom line: we are the parents and they have to respect our wishes, disagreeing with us on the issue has only made things more difficult for everyone.
Aside from that, there have been some issues that ALL could have easily been avoided and saved everyone the stress and frustration that was caused. However, these issues were not avoided and therefore it has made for an extremely stressful few days. I am not a medical professional, so if I am aware that certain things could have been anticipated and prepared for in advance to avoid the situations we encountered, then I am confident that the medical professionals are also aware of this.
After some of the hoopla today, the doctor at the time mentioned that they work as a team and like to be appreciated, so let me reassure you doctor I do appreciate our doctors and medical teams more than you know. HOWEVER, when mistakes that can be avoided continue to happen I am going to take the necessary steps to try and resolve them and prevent them from occurring in the future. Advocating for my son is my top priority. The fewer mistakes, the more I appreciate you and the supporting staff. That said,
Dr. Crews-USACW- You are AMAZING. You are a wonderful human being and a great doctor and we are so thankful for everything you did for us in the beginning of this ordeal.
Dr. Imran-USACW- I feel very fortunate that you diagnosed Clayton. We have not seen you as much as some of the other doctors, and look forward to seeing you again soon.
Dr. Siddiqui-USACW- I have enjoyed having you on our service through the majority of our time spent in the hospital at USACW. I have trusted in your care and was impressed as I watched your bedside manner grow with Clayton. I am not sure why things have been so rocky this month, but I am looking forward to things improving once again.
Dr. Beall-USACW- We feel so fortunate to have you on our team! You have made sure we know to contact you anytime if we ever need anything and you have lived up to that and for that we are so thankful. We will see you again soon as well.
Dr. Terry-Mobile,AL- You are a great doctor who cares about his patients and is attentive to their needs. Our history with you goes back to the days when I was pregnant and you have been a solid force in our lives ever since.
The Bone Marrow Transplant Unit-Children's B'ham- We are so impressed with Rookie, Melissa and Pamela and feel so safe knowing they will be part of the team looking out for us. See y'all soon!
There are definitely more people worth mentioning, but I'm tired so for now that'll do.
The first issue was TPNs (IV nutrition); the doctors here are in favor of them, the doctors in Birmingham prefer methods that use the gut and we agree with the doctors in Birmingham because TPNs can cause liver problems with prolonged use so we would rather steer clear. Unfortunately, some of the professionals here have not been eager to accommodate our wishes. Bottom line: we are the parents and they have to respect our wishes, disagreeing with us on the issue has only made things more difficult for everyone.
Aside from that, there have been some issues that ALL could have easily been avoided and saved everyone the stress and frustration that was caused. However, these issues were not avoided and therefore it has made for an extremely stressful few days. I am not a medical professional, so if I am aware that certain things could have been anticipated and prepared for in advance to avoid the situations we encountered, then I am confident that the medical professionals are also aware of this.
After some of the hoopla today, the doctor at the time mentioned that they work as a team and like to be appreciated, so let me reassure you doctor I do appreciate our doctors and medical teams more than you know. HOWEVER, when mistakes that can be avoided continue to happen I am going to take the necessary steps to try and resolve them and prevent them from occurring in the future. Advocating for my son is my top priority. The fewer mistakes, the more I appreciate you and the supporting staff. That said,
Dr. Crews-USACW- You are AMAZING. You are a wonderful human being and a great doctor and we are so thankful for everything you did for us in the beginning of this ordeal.
Dr. Imran-USACW- I feel very fortunate that you diagnosed Clayton. We have not seen you as much as some of the other doctors, and look forward to seeing you again soon.
Dr. Siddiqui-USACW- I have enjoyed having you on our service through the majority of our time spent in the hospital at USACW. I have trusted in your care and was impressed as I watched your bedside manner grow with Clayton. I am not sure why things have been so rocky this month, but I am looking forward to things improving once again.
Dr. Beall-USACW- We feel so fortunate to have you on our team! You have made sure we know to contact you anytime if we ever need anything and you have lived up to that and for that we are so thankful. We will see you again soon as well.
Dr. Terry-Mobile,AL- You are a great doctor who cares about his patients and is attentive to their needs. Our history with you goes back to the days when I was pregnant and you have been a solid force in our lives ever since.
The Bone Marrow Transplant Unit-Children's B'ham- We are so impressed with Rookie, Melissa and Pamela and feel so safe knowing they will be part of the team looking out for us. See y'all soon!
There are definitely more people worth mentioning, but I'm tired so for now that'll do.
January 19, 2012
January 19, 2012
Clayton urinated so well last night! Seems silly to be so happy about urine, but urine has been a VERY big deal for Clayton since the beginning...kidney issues and all. Last night it was important that he had adequate urine output to flush the chemo through his system (for the drug that could cause potential kidney damage or hearing loss). He was a pee-peeing machine!
Clayton definitely appears to be nauseas on these meds. He threw up once last night and once so far today and is noticeably nauseas when he is awake. Luckily he is asleep. Thank you to the makers of phenergan.
The rest of the morning has been stressful because of issues with IV nutrition v. a g-tube. Different people have different opinions about it and while mine and George's fall in line with Birmingham's, there remains a debate over the issue here. Part of the problem involved extremely high glucose levels this morning. I think the issue is resolved and that everyone is on the same page now. We'll see.
Clayton definitely appears to be nauseas on these meds. He threw up once last night and once so far today and is noticeably nauseas when he is awake. Luckily he is asleep. Thank you to the makers of phenergan.
The rest of the morning has been stressful because of issues with IV nutrition v. a g-tube. Different people have different opinions about it and while mine and George's fall in line with Birmingham's, there remains a debate over the issue here. Part of the problem involved extremely high glucose levels this morning. I think the issue is resolved and that everyone is on the same page now. We'll see.
***GOOD NEWS***
Drum roll please....Bone Marrow Biopsy results came back...
NEGATIVE for malignancy- left & right sides
(keeping in mind that is just the bone marrow, the tumor itself is separate)
So the chemo is definitely doing something...what'd I say last night, everything is for the good news we are always hoping for.
January 18, 2012
January 18, 2012
Sorry about not posting yesterday, we didn't get home from Birmingham until Monday night and then both worked yesterday, so by last night we were zonked. Since January 4th we have only spent two nights at home, and now we're back at the hospital for round three.
All I could do this afternoon was to apologize to Clayton for what I was about to put him through. In the beginning some people would ask, "what if you don't do chemo?" Here is the reality: Clayton will not survive without this treatment. I know that is blunt and might startle some people, but it is what gets me through chemo. Knowing that everything we are doing is to save is life is what gets me through, it is what enables me to have the strength to sign consents agreeing to put my child through the unthinkable. It is what enabled me to stay level-headed and not break down driving back from getting dinner tonight after George told me that for the first medicine Clayton is getting this evening, our nurse will be sitting by his side checking his vitals every 10 minutes for it's two hour duration. It is what kept me from bawling when I got back to the room and saw that they had a crash cart sitting outside the door "just in case" that same medicine causes problems. It is what is giving me the patience to keep from telling some medical professionals what I really think right now because they didn't plan for Clayton's hydration and his IV nutrition properly tonight. It is what has enabled me to accept that the second drug he gets this evening could cause damage to his only working kidney. And it is what has enabled me to accept that that same drug has a 50% chance of causing permanent hearing loss of some kind. It is also the thing that enables me to accept that we will have to do this all over again with these same drugs for the 5th round of chemo.
Now let me answer some questions. Will he have to have the "just-in-case crash cart" medicine again? Yes. He will get it the next two nights and in another round of chemo down the road. Did he need the crash cart? No, but the fact that I am giving my child something that might make a crash cart necessary fills me with sorrow. What might happen to his kidney? In general, his kidney function could decrease and since he only has the one...He could lose some of his hearing? Yes. Just some of it or all of it? We just have to wait and see, if we're lucky, maybe none.
So while blurting out what I did might startle some people, it allows me to justify everything we have to put Clayton through. Knowing that all this bad will lead to something good is what makes all of this suck a little less. Well, that and this...
All I could do this afternoon was to apologize to Clayton for what I was about to put him through. In the beginning some people would ask, "what if you don't do chemo?" Here is the reality: Clayton will not survive without this treatment. I know that is blunt and might startle some people, but it is what gets me through chemo. Knowing that everything we are doing is to save is life is what gets me through, it is what enables me to have the strength to sign consents agreeing to put my child through the unthinkable. It is what enabled me to stay level-headed and not break down driving back from getting dinner tonight after George told me that for the first medicine Clayton is getting this evening, our nurse will be sitting by his side checking his vitals every 10 minutes for it's two hour duration. It is what kept me from bawling when I got back to the room and saw that they had a crash cart sitting outside the door "just in case" that same medicine causes problems. It is what is giving me the patience to keep from telling some medical professionals what I really think right now because they didn't plan for Clayton's hydration and his IV nutrition properly tonight. It is what has enabled me to accept that the second drug he gets this evening could cause damage to his only working kidney. And it is what has enabled me to accept that that same drug has a 50% chance of causing permanent hearing loss of some kind. It is also the thing that enables me to accept that we will have to do this all over again with these same drugs for the 5th round of chemo.
Now let me answer some questions. Will he have to have the "just-in-case crash cart" medicine again? Yes. He will get it the next two nights and in another round of chemo down the road. Did he need the crash cart? No, but the fact that I am giving my child something that might make a crash cart necessary fills me with sorrow. What might happen to his kidney? In general, his kidney function could decrease and since he only has the one...He could lose some of his hearing? Yes. Just some of it or all of it? We just have to wait and see, if we're lucky, maybe none.
So while blurting out what I did might startle some people, it allows me to justify everything we have to put Clayton through. Knowing that all this bad will lead to something good is what makes all of this suck a little less. Well, that and this...
As for what we have to do with this round of chemo? We will spend the rest of the night trying to make sure Clayton urinates every one to two hours in order to flush the drugs out of his system as quick as possible to do as little damage as possible. Then we will get to repeat that same thing every night for the next three nights...no rest for the weary. Off to keep the little man awake.
January 16, 2012
January 16, 2012
Oh, and I got inspired by all of the families I met in Birmingham, so check back at the end of the week for some surprises!
January 15, 2012
January 15, 2012 *UPDATED*
All done! We finished pulling his blood from him at 3:32 and at 4:41 the process was officially finished. We collected 79,000,000 cells over the course of 14 harvests and about 5 hours. Rock on Clayton! That will be enough for multiple transplants if necessary. They will do a culture on those cells to see if they are cancer free and to make sure they are free from bacteria and infection too.
We will get those results back in about two weeks. We are also waiting on the results of the bone marrow aspiration from Friday. Everything went well though, he slept the whole time! Coming home tomorrow!
January 15, 2012
Now we've got things moving. All of the cultures from Friday night and the new ones from yesterday have come back negative, so we started the pheresis around 10:25 this morning. There was a good bit of prepping beforehand. We had to get baselines for all of his vitals as well as calcium levels. The nurse will draw blood every hour throughout the process to make sure that his levels on that end all look good. He was also pre-medicated with Benadryl and Tylenol just like you do with a transfusion. Then the lady doing the procedure came rolling in with her machine (she has been here since 1994 and has been doing this procedure, with this machine, since one of the doctors first implemented it; she is the best of the best).
So once she got set up, we helped them hook up his "vascath" (line used for procedure we had put in on Friday). The line has two lumens. One pulls his blood from him and the other returns his blood once it has been processed.
As the machine pulls the blood from him, it circulates it through it's intricate system and then into a centrifuge that then spins it to separate the different cells based on their weights. The cells we are collecting then collect into a bag. During the entire process, there will be a steady and equal flow of blood both in and out of him. The machine was primed with a mix of transfusion blood and saline to give him in the first few minutes, until the process reached the point in which his own blood is returned to him.
The entire process will take at least 4 hours (only once has the nurse seen it take less). It typically takes from 4-6 hours, but it can sometimes take until midnight. So far we have had no problems, which is a very good sign. Clayton has been asleep since before the procedure started and is sleeping peacefully still. The machine has a humming/sshhh sound much like his noisemaker he sleeps with at home, so it should be soothing to him.
The machine harvests in stages, and we got our first harvest while I was writing this! This is amazing, the cells in this bag are the cells that will give my child his best hope at a prolonged life with the least risk of relapse. These are VERY important and VERY valuable little suckers.
As the machine pulls the blood from him, it circulates it through it's intricate system and then into a centrifuge that then spins it to separate the different cells based on their weights. The cells we are collecting then collect into a bag. During the entire process, there will be a steady and equal flow of blood both in and out of him. The machine was primed with a mix of transfusion blood and saline to give him in the first few minutes, until the process reached the point in which his own blood is returned to him.
 |
| The empty bag on the left is where the cells we harvest will be collected. |
The machine harvests in stages, and we got our first harvest while I was writing this! This is amazing, the cells in this bag are the cells that will give my child his best hope at a prolonged life with the least risk of relapse. These are VERY important and VERY valuable little suckers.
 |
| After 1 harvest |
 |
| After 3 harvests |
**Beware, the following is a bit of a science lesson**
Here is the scoop about what we're harvesting: We are harvesting his CD34 cells. These are the strongest white blood cells he has. These are the bad boys he will get back in the transplant and use to build back his immune system. I am not sure exactly how many we are trying to harvest, I have heard 15 million with some of my research, however it is common to collect 30 million and even 50 million. The more the better. Any extra cells collected will be stored for at least five years in case he ever needs them again. As you can imagine in order to harvest that many of these cells his counts have to be extremely high. I can get the point across with just his white blood cells so I'll use them. A normal white blood count (WBC) is 5.50-15.50. When Clayton is neurtopenic his is around 0.1. We had to wait for them to come up so we watched them rise from 0.1 to 0.22 to 0.55 to 7 (they can jump fast). His white blood count is used to calculate his ANC. When his ANC reached a 1000, then we began giving him a double dose of neupogen (a drug that stimulates the growth of WBC) in order to get as many WBC as possible. So yesterday his WBC were 20.49 and today they were 38.95. As you can see they are well above the normal range, but that is what we needed for harvesting. Good stuff, huh?
**I believe that concludes today's science lesson**
Anyhow, the doctor has been in to check on things and the process seems to be going well. We have had multiple harvests now and the technician doing the procedure estimated that based on our progress so far, we may be doing this until 3:30 or so. We should know around 5ish how many cells we collected and if we have to try it again tomorrow. They will also do cultures on the cells that have been collected to ensure that they are cancer free and free of any bacterias as well(not sure when we'll know those results). I'll update everyone later. For now, he is still sleeping peacefully...blissfully unaware of the awesome process that will do so much for him later on...
I hope this helps everyone feels connected. I know some people like to know more details than others and so I try to give as many of the details as I can.
January 14, 2012
January 14, 2012
As usual, the schedule has changed. George said he is going to stop telling his boss when he is going to be back at work because he is starting to feel like an idiot everytime he has to call him back to tell him things have changed. Here is the new plan:
Sunday- stem cell harvesting (pheresis) provided that the cultures from Friday don't grow anything and nothing else changes.
Monday- come home
Wednesday- Start round three of chemo. We were finally able to arrange our chemo schedule so we won't have to do so much of it during the week days. That way we can give more time to work.
As for an update on last night, things calmed down overnight and Clayton slept peacefully and woke up happy. We aren't sure what made his blood pressure dive. We've always had problems with high blood pressure not low. A side effect of the chemo has been better blood pressures though, so for now we are going to try and take him off his blood pressure medicine until the numbers tell us to do otherwise. As for his counts, they are very high which is perfect for harvesting provided it doesn't get postponed yet again. So we're keeping our fingers crossed.,
The past few days have just been insane. You would think that some of what we are doing would involve a lot of sitting around and even opportunities for napping, but no. A third of the day is usually spent talking to doctors and nurses about Clayton stuff, another third playing, pacifying and cleaning up after Clayton and the other third trying to take care of things on the phone or the computer. Thursday, we literally had people coming in and out of our room at least every thirty minutes from 8 or so in the morning until midnight. It isn't even that we don't want to talk to the various people (well some we don't), mostly it is a just a matter of wanting a few minutes of peace. I even sent someone away on Friday when they walked in as George and I were trying to eat. It has become rare for us to be able to eat at the same time much less eat a warm meal. All whining aside, today has been fairly quiet and it isn't usually as busy at USACW.
Anyhow, we got moved to the Bone Marrow Transplant floor on Thursday and this is the same floor we will be on when we come back for the transplant. It is such a departure from the busy oncology unit. You could hear a pin drop up here. There are only 4 more kids on the oncology unit then there are up here, but the environment is different. This floor is all about isolation. Wash in, wash out, don't hang out in halls, can't share a bed with your child, gown and gloves,etc. When you arrive on the floor, the unit is to the right and you have to ring a doorbell to be admitted to the "sani rooom". From there you have the clinic to the right and the in-patient unit to the left, but before you can go in either, you have to scrub, scrub, scrub. The sinks in this unit don't even have knobs they have pedals because of germs. It is a very different world up here.
It will be a long month when when we come for transplant. Here is a glimpse of what our digs will be like:
You can see how George and I unfold our chairs into our beds up against the windows. Comfy! When we're here to stay for a while, we'll get to make the place homey. They have mats that we can put on the floor for Clayton to play. Lots of rules though, they gave me a 210 page book to read to prepare for the transplant and life during and after.
Sunday- stem cell harvesting (pheresis) provided that the cultures from Friday don't grow anything and nothing else changes.
Monday- come home
Wednesday- Start round three of chemo. We were finally able to arrange our chemo schedule so we won't have to do so much of it during the week days. That way we can give more time to work.
As for an update on last night, things calmed down overnight and Clayton slept peacefully and woke up happy. We aren't sure what made his blood pressure dive. We've always had problems with high blood pressure not low. A side effect of the chemo has been better blood pressures though, so for now we are going to try and take him off his blood pressure medicine until the numbers tell us to do otherwise. As for his counts, they are very high which is perfect for harvesting provided it doesn't get postponed yet again. So we're keeping our fingers crossed.,
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| Playing peeka-boo with Dad. |
The past few days have just been insane. You would think that some of what we are doing would involve a lot of sitting around and even opportunities for napping, but no. A third of the day is usually spent talking to doctors and nurses about Clayton stuff, another third playing, pacifying and cleaning up after Clayton and the other third trying to take care of things on the phone or the computer. Thursday, we literally had people coming in and out of our room at least every thirty minutes from 8 or so in the morning until midnight. It isn't even that we don't want to talk to the various people (well some we don't), mostly it is a just a matter of wanting a few minutes of peace. I even sent someone away on Friday when they walked in as George and I were trying to eat. It has become rare for us to be able to eat at the same time much less eat a warm meal. All whining aside, today has been fairly quiet and it isn't usually as busy at USACW.
Anyhow, we got moved to the Bone Marrow Transplant floor on Thursday and this is the same floor we will be on when we come back for the transplant. It is such a departure from the busy oncology unit. You could hear a pin drop up here. There are only 4 more kids on the oncology unit then there are up here, but the environment is different. This floor is all about isolation. Wash in, wash out, don't hang out in halls, can't share a bed with your child, gown and gloves,etc. When you arrive on the floor, the unit is to the right and you have to ring a doorbell to be admitted to the "sani rooom". From there you have the clinic to the right and the in-patient unit to the left, but before you can go in either, you have to scrub, scrub, scrub. The sinks in this unit don't even have knobs they have pedals because of germs. It is a very different world up here.
January 13, 2012
January 13, 2012
It is definitely Friday the 13th. We have had a VERY long and stressful day so I'll update everyone real quick and explain more tomorrow. Clayton had his bone marrow aspiration today and his catheter used for harvesting cells was put in. However, this evening he spiked a fever and so we will not be able to harvest tomorrow. They did blood cultures and so now we have to wait and see if anything grows in the next 24 hours. Depending on what the cultures show we are now hoping to do the harvest on Sunday. The soonest we will know about Sunday is 7 or 8 Saturday evening.
One of the other complications of the day, involved us spending the last 6 hours battling Clayton's blood pressure. For some reason his blood pressure decided to dive late this afternoon around 4. The issue was combated immediately with fluids and later in the evening with a blood transfusion as well. We do not know the cause for sure; It could be from his hemoglobin dropping, from a lack of fluid over a few hours following a sedation or from him receiving his blood pressure medicine when his blood pressure was already low from having been sedated. Regardless, we have a few bones to pick with some people tomorrow regarding how some things were handled with a number of issues today involving both this hospital and USACW.
More tomorrow...
To every nurse and doctor out there: I think MOST of you need to remember how you would feel if your child were the sick child. The way y'all sometimes treat all of us parents would outrage you if roles were reversed. Consider this, not one parent with a sick child chooses to be in the hospital, we're here because we have no choice. As medical professionals y'all chose to be here.
One of the other complications of the day, involved us spending the last 6 hours battling Clayton's blood pressure. For some reason his blood pressure decided to dive late this afternoon around 4. The issue was combated immediately with fluids and later in the evening with a blood transfusion as well. We do not know the cause for sure; It could be from his hemoglobin dropping, from a lack of fluid over a few hours following a sedation or from him receiving his blood pressure medicine when his blood pressure was already low from having been sedated. Regardless, we have a few bones to pick with some people tomorrow regarding how some things were handled with a number of issues today involving both this hospital and USACW.
More tomorrow...
To every nurse and doctor out there: I think MOST of you need to remember how you would feel if your child were the sick child. The way y'all sometimes treat all of us parents would outrage you if roles were reversed. Consider this, not one parent with a sick child chooses to be in the hospital, we're here because we have no choice. As medical professionals y'all chose to be here.
January 12, 2012
January 12, 2012
Today was good and bad and everything in between. Clayton was either really grouchy or really happy all day, there wasn't much middle ground. However, his counts did come up; they jumped from 385 yesterday to about 1050 today. I think he is tired of all the people coming in and out and I'd be lying if I said I wasn't sick of it too.
So good news: his counts are up and he is no longer neutropenic. Bad news: we still will not be harvesting tomorrow because his CD34 percentage is not high enough. So here is the new schedule:
Friday- Insert catheter used for harvesting & do bone marrow biopsy (results at end of next week)
Saturday- Harvest cells
Sunday- Come home
Monday to Thursday- Chemo round 3
So as you can see , things will continue to be busy through next week. However, through all the madness there have been some bright spots. First, I got to meet some other cancer parents last night. It was nice. Two of the parents have girls with AML and the third parent's child had neuroblastoma! Go figure. The neuroblastoma family is from Brewton, AL. They have a 3 year-old little girl and are here for pheresis just like us. They are under going a different treatment protocol though. The two girls with AML are 12 and 2. One of them is almost finished with her transplant "stuff" and the 2 year old just had her transplant on December 27th. As you can see we have gotten to meet folks from all walks of the process which has been helpful.
We got moved up to the the Bone Marrow Transplant floor this evening too. Not real thrilled with our nurse. She's a newbie with oncology/hemocology and I know more than she does. More details on the new floor tomorrow.
The second bright spot today was my beads of courage. They are beads that the oncology children get for every milestone the pass. Every test, every round of chemo, every procedure, every blood draw, every night in the hospital...everything. I was really excited to learn about these because it gives us something tangible to comemerate every step we take in the right direction.
Well until tomorrow here is a little "happy"...it's blurry, but you get the point...
So good news: his counts are up and he is no longer neutropenic. Bad news: we still will not be harvesting tomorrow because his CD34 percentage is not high enough. So here is the new schedule:
Friday- Insert catheter used for harvesting & do bone marrow biopsy (results at end of next week)
Saturday- Harvest cells
Sunday- Come home
Monday to Thursday- Chemo round 3
So as you can see , things will continue to be busy through next week. However, through all the madness there have been some bright spots. First, I got to meet some other cancer parents last night. It was nice. Two of the parents have girls with AML and the third parent's child had neuroblastoma! Go figure. The neuroblastoma family is from Brewton, AL. They have a 3 year-old little girl and are here for pheresis just like us. They are under going a different treatment protocol though. The two girls with AML are 12 and 2. One of them is almost finished with her transplant "stuff" and the 2 year old just had her transplant on December 27th. As you can see we have gotten to meet folks from all walks of the process which has been helpful.
We got moved up to the the Bone Marrow Transplant floor this evening too. Not real thrilled with our nurse. She's a newbie with oncology/hemocology and I know more than she does. More details on the new floor tomorrow.
The second bright spot today was my beads of courage. They are beads that the oncology children get for every milestone the pass. Every test, every round of chemo, every procedure, every blood draw, every night in the hospital...everything. I was really excited to learn about these because it gives us something tangible to comemerate every step we take in the right direction.
Well until tomorrow here is a little "happy"...it's blurry, but you get the point...
January 11, 2012
January 11, 2012
Today was an OK day. Clayton's counts went from 88 yesterday to 385 today. Big jump, but still neutropenic. It is a very good indicator that they could rise rapidly though tomorrow which is what we are looking for. He did some more nibbling here and there today, but no drinking. He seemed a little grouchier today than yesterday, but he did have one good spurt of happiness.
We're shooting to harvest on Friday now and maybe home on Saturday?
I got to see some familiar faces today. I recognized the lady who worked in The Go Store years ago; she's still here. I also talked with the chaplain that would visit Clayton in the NICU. He does not see the oncology kids much, there is another chaplain for us, but we caught up and since his pee pee prayer he did for Clayton 3 + years ago worked so well, he's going to come visit Clayton this evening and say a little prayer. I also got to visit the Bone Marrow Transplant unit to see where we'll do the harvest and where we'll be for the transplant.
Two questions we get a lot are do you need bone marrow donors? And can I donate blood to Clayton?
First let me say that Clayton is B+.
As for the first question, no we do not need bone marrow donors. We are nowhere close to needing them and hopefully will never need them. If we ever did need one, none of our family members would work. A complete stranger would be a more likely match then a family member. George and I are both a half match meaning that obviously the only family member that would be a match would be if Clayton ever had a sibling. However, we are grateful for all of the gracious offers. We will be sure and let everyone know if we ever need a donor.
As for the blood donations, we have always been told that people cannot donate specifically to Clayton, but I have recently uncovered a way in which people can. I will have to check into it further though. For now we'll leave that hanging...
We're shooting to harvest on Friday now and maybe home on Saturday?
I got to see some familiar faces today. I recognized the lady who worked in The Go Store years ago; she's still here. I also talked with the chaplain that would visit Clayton in the NICU. He does not see the oncology kids much, there is another chaplain for us, but we caught up and since his pee pee prayer he did for Clayton 3 + years ago worked so well, he's going to come visit Clayton this evening and say a little prayer. I also got to visit the Bone Marrow Transplant unit to see where we'll do the harvest and where we'll be for the transplant.
Two questions we get a lot are do you need bone marrow donors? And can I donate blood to Clayton?
First let me say that Clayton is B+.
As for the first question, no we do not need bone marrow donors. We are nowhere close to needing them and hopefully will never need them. If we ever did need one, none of our family members would work. A complete stranger would be a more likely match then a family member. George and I are both a half match meaning that obviously the only family member that would be a match would be if Clayton ever had a sibling. However, we are grateful for all of the gracious offers. We will be sure and let everyone know if we ever need a donor.
As for the blood donations, we have always been told that people cannot donate specifically to Clayton, but I have recently uncovered a way in which people can. I will have to check into it further though. For now we'll leave that hanging...
January 10, 2012
January 10, 2012
Clayton had a great day today. He woke up around 3 this morning and was fussy, so we gave him a dose of morphine and he spent the rest of the morning playing in is bed or on the pull out bed with his toys. He didn't even seem to need more morphine after the other wore off.
He fell asleep around 10:30, slept for a few hours and then woke up just a playful as before. We could tell last night that he was starting to feel better (meaning his counts were coming up) and his behavior this morning confirmed it. Later so did the nurse when she reported that his blood counts has doubled. Don't get excited though. His counts are only at 88 and to put that into perspective, below 500 is suppose to be isolation, so we have a ways to go. BUT we made progress!
Wait for it...there's more...He started trying to eat again tonight!! That's huge! He's not chowing down, but a little bite here and a little bite there means we're getting closer...AND he hasn't needed anymore morphine!
Hoping to harvest on Friday now.
Wait for it...there's more...He started trying to eat again tonight!! That's huge! He's not chowing down, but a little bite here and a little bite there means we're getting closer...AND he hasn't needed anymore morphine!
Hoping to harvest on Friday now.
January 9, 2012
January 9, 2012
So in the first post today I mentioned I would elaborate on how we have gotten reacquainted with Children's Hospital here in Birmingham. We spent a good deal of time here when Clayton was in the NICU as an infant, so in a weird way it was comforting to come here even though this visit will be a whole new ball game then our last stay. Last time he was in the NICU where the nurses would kick us out from time to time and we had to leave at night. This time (just like at USACW) someone has to be here with him around the clock. Of course here in Birmingham, we have nothing else to do (no work or house to care for). This stay is definitely highlighting the differences between the two hospitals. Some good, some bad. Here are some of our favorite things about Children's:
- The Go Store- they have a really awesome "convenient store" downstairs with lots of good treats.
- The cafeteria- their cafeteria completely rocks my world. Lots of options. They do a good job of creating an environment where you don't have to leave the hospital to get a good meal. They've got a pizza bar, a fried food buffet (chicken tenders, french fries, etc.), a home cooked side (with veggies and meats), a salad bar, a fruit bar, and pre-packaged options too.
- They treat the parents so good here! (It was not like this in the NICU) We are considered to be in Tower 4 and we have our own parents lounge with a fridge, microwave and a washer and dryer just for our area (no other people from anywhere in the hospital are allowed in there)! AND the nurses have a food lounge with drink and snack options for the parents here and there.
- The room itself isn't a favorite feature, but the fact that the room has two chairs that unfold into beds is awesome! Since we first started spending time in the hospital, I have spent every night except for three sleeping in the bed with Clayton and since he usually sleeps in the middle, my back and hips were thrilled to have a space to call their own.
For this week at least this is our home...24 hrs...every day...
January 9, 2012
OK. So no harvesting tomorrow. The soonest we will be able to do it now will be Wednesday. I'll explain: As I've mentioned before, his counts are low and they need his counts to be at their peak in order to harvest. So when they start to see any sign that his counts are coming up, they will give him something to stimulate them in order to do the harvest; until then, we wait.
Today has been OK though. Clayton has spent much of the day sleeping since he has gotten a good deal of morphine to combat his discomfort from his mouth and throat sores. He also got another platelet transfusion. He is playing with his toys right now which is nice to see. Still waiting to see a smile though; it's been a while since we've seen him smile :(...Never mind, right after I wrote that he got real playful and we saw our first smile in days!
We have gotten to know some of the team we will be spending a LOT of time with when it comes time for the transplant.
AND we have also gotten reaquainted with Children's Hospital...more on that later.
Today has been OK though. Clayton has spent much of the day sleeping since he has gotten a good deal of morphine to combat his discomfort from his mouth and throat sores. He also got another platelet transfusion. He is playing with his toys right now which is nice to see. Still waiting to see a smile though; it's been a while since we've seen him smile :(...Never mind, right after I wrote that he got real playful and we saw our first smile in days!
We have gotten to know some of the team we will be spending a LOT of time with when it comes time for the transplant.
AND we have also gotten reaquainted with Children's Hospital...more on that later.
January 8, 2012
January 8, 2012
Today is transport day. George and Clayton are going to ride to Birmingham in the ambulance, and I'm going to drive up with our stuff. I must say his ambulance car seat is an air seat and looks VERY comfy.
His ANC is still 0 so his immune system is essentially non-existent at the time and he is still getting morphine for his sores. They have done blood cultures every day that we have been here and so far only one of the three done the first day have started to grow something- meaning probably a contaminated sample. Going to do one more culture in Birmingham and if that comes back clean on Monday then we'll start prepping for harvest.
**Updated**
We safely made it to Birmingham and have gotten settled. We should know tomorrow if we'll get to harvest on time.
His ANC is still 0 so his immune system is essentially non-existent at the time and he is still getting morphine for his sores. They have done blood cultures every day that we have been here and so far only one of the three done the first day have started to grow something- meaning probably a contaminated sample. Going to do one more culture in Birmingham and if that comes back clean on Monday then we'll start prepping for harvest.
**Updated**
We safely made it to Birmingham and have gotten settled. We should know tomorrow if we'll get to harvest on time.
January 7, 2012
Today is fairly easy-going. Clayton was so uncomfortable with his throat (and now mouth) sores, that the doctor wrote for some anxiety medicine and some morphine for pain. I'm thrilled about the morphine. Ever since getting the morphine he has been doing much better! He is still neutropenic though and needed a platelet transfusion today.
January 6, 2012
Today wasn't much better than yesterday. Lots of confusion with doctor and nurses over results of blood cultures. Having a difficult time trying to make sure everything is set up for harvesting his cells in Birmingham on Tuesday. Apparently we might now have to transport him in an ambulance on Sunday. Things are a mess today!
January 5, 2012
January 5, 2012
Today was a REALLY long day, so check back tomorrow and I'll post a nice big update from today's happenings. For now it's time for bed!
**UPDATED**
Clayton didn't have the best day today. After each round of chemo his counts will drop somewhere around the 7th to 10th day. We are on day 9. As his counts drop he becomes more and more susceptible to infections because his immune system is so weak. As we learned after the first round of chemo, Clayton seems to be a victim of throat sores during this neutropenic phase as well- which means no eating and drinking.
Long story short, all the above led us to check into the hospital yesterday in order to start him on IV nutrition so he doesn't lose anymore weight. After we got here Wednesday morning, Clayton started running a fever for which they had to do cultures and start him on antibiotics. Today we found out one of the cultures was growing something- meaning bacteria/infection. So now we wait to find out more.
**UPDATED**
Clayton didn't have the best day today. After each round of chemo his counts will drop somewhere around the 7th to 10th day. We are on day 9. As his counts drop he becomes more and more susceptible to infections because his immune system is so weak. As we learned after the first round of chemo, Clayton seems to be a victim of throat sores during this neutropenic phase as well- which means no eating and drinking.
Long story short, all the above led us to check into the hospital yesterday in order to start him on IV nutrition so he doesn't lose anymore weight. After we got here Wednesday morning, Clayton started running a fever for which they had to do cultures and start him on antibiotics. Today we found out one of the cultures was growing something- meaning bacteria/infection. So now we wait to find out more.
January 4, 2012
January 4, 2012
Here it is! I hope this blog helps all our friends and family keep up with what's going on with Clayton. Check back soon as I add to it!
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