Before I go to bed...
HAPPY 75th POPPY!
July 31, 2012
July 27, 2012
July 28, 2012
I have so much to say right now. I could start by telling everyone how ridiculous our trip home was Thursday night/ Friday morning OR I could decide not to waste any more of my time reliving the frustration. At least not here. This place is about more important frustrations and triumphs.
Instead, let me start by saying we are home and Clayton is still NED. It is hard to believe that what is behind us is behind us and that 3f8 is the only foreseeable treatment ahead. I am filled with so many things; disbelief, awe, joy, worry, sadness, fear, elation, gratitude. It almost feels like a new beginning. Maybe it is...
I cannot move forward though until I express our thanks. So many people have been so amazing to us throughout this entire thing. Our neighbors have been awesome. They have mowed our yard, watched after Otis and never failed to find ways to express concern and let us know they are there for us. Our families have of course been rocks through out this process. Not everyone is lucky enough to have that and George and I are grateful we do.
One of the MOST important supporting factors in our fight against Clayton's cancer has been our coworkers at the city. Wow. Y'all are amazing. Thank you is not sufficient and George and I feel so fortunate to be a part of our city coworker "family". We could not have been there for our son the way we have been without the patience and generosity of so many employees. Everybody has a choice, and from the beginning our bosses CHOSE to be supportive. Their support not only made a world of difference to us, but most importantly let Clayton have both his mom and his dad with him during some of his hardest moments. To those we work with directly, thank you so much for working extra hard in our absence and being so understanding throughout this ordeal. Everyone at the city has been so amazing. George and I are humbled everyday.
There are just so many people to thank. It is always such a shock to realize just how many people keep up with Clayton. We are so grateful for all of the thoughts and prayers. Every single one is needed. Thank you so so so much...to everyone.
Instead, let me start by saying we are home and Clayton is still NED. It is hard to believe that what is behind us is behind us and that 3f8 is the only foreseeable treatment ahead. I am filled with so many things; disbelief, awe, joy, worry, sadness, fear, elation, gratitude. It almost feels like a new beginning. Maybe it is...
I cannot move forward though until I express our thanks. So many people have been so amazing to us throughout this entire thing. Our neighbors have been awesome. They have mowed our yard, watched after Otis and never failed to find ways to express concern and let us know they are there for us. Our families have of course been rocks through out this process. Not everyone is lucky enough to have that and George and I are grateful we do.
One of the MOST important supporting factors in our fight against Clayton's cancer has been our coworkers at the city. Wow. Y'all are amazing. Thank you is not sufficient and George and I feel so fortunate to be a part of our city coworker "family". We could not have been there for our son the way we have been without the patience and generosity of so many employees. Everybody has a choice, and from the beginning our bosses CHOSE to be supportive. Their support not only made a world of difference to us, but most importantly let Clayton have both his mom and his dad with him during some of his hardest moments. To those we work with directly, thank you so much for working extra hard in our absence and being so understanding throughout this ordeal. Everyone at the city has been so amazing. George and I are humbled everyday.
There are just so many people to thank. It is always such a shock to realize just how many people keep up with Clayton. We are so grateful for all of the thoughts and prayers. Every single one is needed. Thank you so so so much...to everyone.
July 25, 2012
July 25, 2012
Wow! We are packing up our room at the Ronald right now. Crazy. This place has literally been my home for two months. Since May 28, Clayton and I have only spent about eight nights at home. Its hard to believe it has been that long. Time has become one big blur. For months, my life hasn't been measured in days and hours, but rather in events; "two rounds of chemo ago", "after the 6th round of radiation", "following surgery on his bladder". If all goes well Thursday morning, we will be leaving that sequence of events behind us and moving on...we have a meeting with the neuroblastoma attending to get the results of his latest scans and hopefully sign consents for 3f8. We also will be getting his final tube removed! Well except for his Hickman; they want us to keep that through the second round of 3f8. George and I have felt like the supra pubic tube could have come out by now, but we completely respect Dr. La Quaglia's methods. Having been in place for two months, the CT last Thursday showed that the tube has recently come out of his bladder. So Thursday morning, Dr. La Quaglia is going to have Clayton sedated and remove the tube. Yay!
Aside from that, Clayton is doing good. He started the week off a little grouchy and continued not to have an appetite, but things turned around yesterday. He's eating better and even ventured out and tried some sweet potato fries and BBQ chicken last night. Yea, Justin Timberlake's restaurant, Southern Hospitality, has been our saving grace when we crave southern food.
It's hard to believe we will be home by the weekend. I'm so happy for Clayton though; it always does him good to be home. I'm also excited, because as things settle down over the coming months, he will get to start the early preschool program. It is specially designed for children with speech delays and such like Clayton. All of his treatment and hospital stays have gotten him more behind, so that program will be really really good for him. And hopefully, once he is potty trained, we can get him back in the Learning Tree program too. Potty training has been a no-go so far because of all the in and out of the hospital and the fact that when we were potty training him before his diagnosis, it failed because he was having the urine retention and had little control over his bladder.
George and I are just ready to be home. I am super excited too because Clayton and I are getting our new couch! Remember I mentioned I would love a new couch, one that hasn't been plagued by chemo. Well George and our parents went in for my birthday and got me and Clayton a couch! So excited! And I say me and Clayton, because with me and George working 40 hours a week, let's face it, Clayton will spend more time on the couch then anyone else; and he deserves something comfortable. This is a big deal. We have always had hand-me-down or slipcovered-thrift store couches so if fighting cancer didn't make me feel like a grown up, our new couch definitely will! I'm sure this doesn't make much sense to the men out there, but I'm sure the women get it. It's like getting a matching washer and dryer...it's a big deal...or at least it's a milestone. So lots to look forward too!
I'll update about the scans as soon as I know...
Oh and a huge thank you to a special lady here in NYC named Barbara who loves these kids to death. Her mission in life seems to be bringing joy to these kids' lives.
And also please pray for a special little boy named Matthew. He is less than a year older than Clayton and was diagnosed just three days after Clayton. He has a significant amount of disease in his bones and unfortunately the chemo is not doing much to eliminate it. They have no where else to go, but here for help and they need all the prayers they can get that these awesome doctors at MSKCC can figure out an option that will work for him. He is so vibrant and full of life that you would never know he was sick. I spent a little time with him and his mom yesterday and he kept me smiling the whole time!
Aside from that, Clayton is doing good. He started the week off a little grouchy and continued not to have an appetite, but things turned around yesterday. He's eating better and even ventured out and tried some sweet potato fries and BBQ chicken last night. Yea, Justin Timberlake's restaurant, Southern Hospitality, has been our saving grace when we crave southern food.
It's hard to believe we will be home by the weekend. I'm so happy for Clayton though; it always does him good to be home. I'm also excited, because as things settle down over the coming months, he will get to start the early preschool program. It is specially designed for children with speech delays and such like Clayton. All of his treatment and hospital stays have gotten him more behind, so that program will be really really good for him. And hopefully, once he is potty trained, we can get him back in the Learning Tree program too. Potty training has been a no-go so far because of all the in and out of the hospital and the fact that when we were potty training him before his diagnosis, it failed because he was having the urine retention and had little control over his bladder.
George and I are just ready to be home. I am super excited too because Clayton and I are getting our new couch! Remember I mentioned I would love a new couch, one that hasn't been plagued by chemo. Well George and our parents went in for my birthday and got me and Clayton a couch! So excited! And I say me and Clayton, because with me and George working 40 hours a week, let's face it, Clayton will spend more time on the couch then anyone else; and he deserves something comfortable. This is a big deal. We have always had hand-me-down or slipcovered-thrift store couches so if fighting cancer didn't make me feel like a grown up, our new couch definitely will! I'm sure this doesn't make much sense to the men out there, but I'm sure the women get it. It's like getting a matching washer and dryer...it's a big deal...or at least it's a milestone. So lots to look forward too!
I'll update about the scans as soon as I know...
Oh and a huge thank you to a special lady here in NYC named Barbara who loves these kids to death. Her mission in life seems to be bringing joy to these kids' lives.
And also please pray for a special little boy named Matthew. He is less than a year older than Clayton and was diagnosed just three days after Clayton. He has a significant amount of disease in his bones and unfortunately the chemo is not doing much to eliminate it. They have no where else to go, but here for help and they need all the prayers they can get that these awesome doctors at MSKCC can figure out an option that will work for him. He is so vibrant and full of life that you would never know he was sick. I spent a little time with him and his mom yesterday and he kept me smiling the whole time!
July 23, 2012
July 22, 2012
What an awesome day! The weather was perfect. I mean perfect. You could be outside and it was warm, but cool enough that you didn't sweat at all. Even in the sun, there was a breeze to keep you from getting to hot. It could not have been more perfect. Did I mention how perfect it was?
We booked a zip car (Thank you Daniel) and headed up to the coast to the Hampton Bays area. Clayton and I dropped George and his brother off for a four hour fishing excursion near Shinnecock Bay and then headed over to the Riverhead area for some Tanger Outlet therapy.
Clayton and I had a few hours to check things out then we headed back to the shore to meet George and Mickey coming back in...
So it wasn't the most successful fishing trip ever, but they had fun. After we ate at Sundays on the Bay...AMAZING! Best food I've had since we started coming up here!
It was so nice to get out of the city. Much more mine and George's style. The city life is not for us. We would rather have a beer and some good food while relaxing on a deck overlooking a marina any day of the week. So while we could, we soaked it all up. I literally kept turning around and looking at the view as we were leaving the restaurant because I knew that beautiful scenery was about to be traded for concrete and well, more concrete.
But first, with the Atlantic Ocean just on the other side of the sand dunes, I couldn't resist taking Clayton to dip his toes in. He loved it. There were multiple times George had to keep him from belly flopping right into a wave. Loved it!
We booked a zip car (Thank you Daniel) and headed up to the coast to the Hampton Bays area. Clayton and I dropped George and his brother off for a four hour fishing excursion near Shinnecock Bay and then headed over to the Riverhead area for some Tanger Outlet therapy.
Clayton and I had a few hours to check things out then we headed back to the shore to meet George and Mickey coming back in...
So it wasn't the most successful fishing trip ever, but they had fun. After we ate at Sundays on the Bay...AMAZING! Best food I've had since we started coming up here!
It was so nice to get out of the city. Much more mine and George's style. The city life is not for us. We would rather have a beer and some good food while relaxing on a deck overlooking a marina any day of the week. So while we could, we soaked it all up. I literally kept turning around and looking at the view as we were leaving the restaurant because I knew that beautiful scenery was about to be traded for concrete and well, more concrete.
But first, with the Atlantic Ocean just on the other side of the sand dunes, I couldn't resist taking Clayton to dip his toes in. He loved it. There were multiple times George had to keep him from belly flopping right into a wave. Loved it!
July 22, 2012
So long story short, between rhinovirus and being sedated so many times over the past two weeks, Clayton had a hard time holding his oxygen levels after his CT on Thursday. We ended up having to stay over night at the hospital Thursday night because even though his oxygen levels were improving, they were improving very slowly and so they decided to watch him over night...he was fine. We got discharged Friday afternoon, but because of everything, they decided to cancel his scan Friday which in turn pushed back everything. So now we will finish his tests Wednesday and Thursday and instead of starting 3f8 on the 30th, we will be home ALL week that week and come back to start 3f8 on the 6th. Once we get through the week of the 6th then we will finally start getting long breaks at home...starting with a full three weeks!
Right now we are off for some fun...be back later...
Right now we are off for some fun...be back later...
July 19, 2012
July 19, 2012
What a mystery this child is! So since he was diagnosed, everyone has said he had an allergy to SSKI (iodine) drops that he receives to protect his thyroid from the injection he has to have for the MIBG scan. Well the nurse practitioner here yesterday was trying to pin point if it was that or the MIBG injection itself. There has been a lot of questions about it and they decided that he was allergic to a buffer attached to the radio isotope that makes up the MIBG injection, so we have been pre-medicating him for that.
Then this morning, before he ever had the MIBG injection, he started getting hives; so back at square one...not knowing what the culprit is...
I think I told everyone we were doing a CT today, an MIBG Friday and a bone marrow Monday?. Well we are. One because they have to do it before starting the 3f8 and also because it has been so long since he actually had cancer treatment that it is wise to see what is going on inside him. This is "scanxiety" all over again. Please pray the cancer has not come back because it can...sometimes it does.
Just last night I was reading about a little girl diagnosed in May of 2009 and she went through treatment (different than ours though) was declared NED in November 2009, relapsed in January 2010 and was plagued by such aggressive tumors that she passed away in March 2010. Not even a year after diagnosis. I think it is (sometimes) expected that we are suppose to be over the moon that he was declared NED, and we are; we just know too much to be too happy just yet. One of the biggest "tests" with neuroblastoma is if it relapses and where. Where makes a lot of difference. It will be at least two years before we can really feel at ease with things, but we will be happier with every good set of scans we get. And we will most certainly be appreciative of all of the good times.
Clayton really is magical. He is so perfect. Scoliosis, cancer, lack of a kidney, none of it can take away from how perfect he is to me. I wish other people got to see the amazing little boy that George and I know, but most don't. When he gets excited and starts waving his hands and shuffling his feet while giggling so hard that sometimes no sound comes out, there is nothing better in the world. All of the things cancer takes from you, love and appreciation are two of the things that it gives you; a whole new kind of love for your child.
In a cruel twist, it also makes it harder for those moms that lose their children. I have read so many of those stories now and I have met so many other families knowing that if statistics are right, then some of our children will not survive this. None of us know which of us it might be, we are all just trying to make it to tomorrow, praying to God it doesn't turn into one of the worst days of our lives. The stories of parents who have had to take their children home on hospice care are heartbreaking. Just this past week, I have found myself trying to hide tears in the day hospital as I read about the final days of a sweet baby boy and I have found myself crying silently in the middle of the night while George and Clayton slept as I learned about the pain a family experienced as their little girl drifted away. To those moms who have lost their children to this horrible beast, I am so so sorry for your loss. No words will ever be sufficient at expressing my sorrow for what you have had to endure. It seems torturous to discover just how deeply and unconditionally you can love your child just to have them taken from you.
The mother of the little girl I mentioned above had the story below posted on her blog. The part about patience amused me; it seemed so appropriate.
The Chosen Mothers
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”
Finally, He passes a name to an angel and says, “Give her a child with cancer.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”
“But, does she have patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps -”Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her patron Saint?” asks the angel. His pen poised in mid-air. God smiles, “A mirror will suffice.”
Then this morning, before he ever had the MIBG injection, he started getting hives; so back at square one...not knowing what the culprit is...
I think I told everyone we were doing a CT today, an MIBG Friday and a bone marrow Monday?. Well we are. One because they have to do it before starting the 3f8 and also because it has been so long since he actually had cancer treatment that it is wise to see what is going on inside him. This is "scanxiety" all over again. Please pray the cancer has not come back because it can...sometimes it does.
Just last night I was reading about a little girl diagnosed in May of 2009 and she went through treatment (different than ours though) was declared NED in November 2009, relapsed in January 2010 and was plagued by such aggressive tumors that she passed away in March 2010. Not even a year after diagnosis. I think it is (sometimes) expected that we are suppose to be over the moon that he was declared NED, and we are; we just know too much to be too happy just yet. One of the biggest "tests" with neuroblastoma is if it relapses and where. Where makes a lot of difference. It will be at least two years before we can really feel at ease with things, but we will be happier with every good set of scans we get. And we will most certainly be appreciative of all of the good times.
Clayton really is magical. He is so perfect. Scoliosis, cancer, lack of a kidney, none of it can take away from how perfect he is to me. I wish other people got to see the amazing little boy that George and I know, but most don't. When he gets excited and starts waving his hands and shuffling his feet while giggling so hard that sometimes no sound comes out, there is nothing better in the world. All of the things cancer takes from you, love and appreciation are two of the things that it gives you; a whole new kind of love for your child.
In a cruel twist, it also makes it harder for those moms that lose their children. I have read so many of those stories now and I have met so many other families knowing that if statistics are right, then some of our children will not survive this. None of us know which of us it might be, we are all just trying to make it to tomorrow, praying to God it doesn't turn into one of the worst days of our lives. The stories of parents who have had to take their children home on hospice care are heartbreaking. Just this past week, I have found myself trying to hide tears in the day hospital as I read about the final days of a sweet baby boy and I have found myself crying silently in the middle of the night while George and Clayton slept as I learned about the pain a family experienced as their little girl drifted away. To those moms who have lost their children to this horrible beast, I am so so sorry for your loss. No words will ever be sufficient at expressing my sorrow for what you have had to endure. It seems torturous to discover just how deeply and unconditionally you can love your child just to have them taken from you.
The mother of the little girl I mentioned above had the story below posted on her blog. The part about patience amused me; it seemed so appropriate.
The Chosen Mothers
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”
Finally, He passes a name to an angel and says, “Give her a child with cancer.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”
“But, does she have patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps -”Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her patron Saint?” asks the angel. His pen poised in mid-air. God smiles, “A mirror will suffice.”
July 18, 2012 cont...
Yay! The x-ray looked good and the nurse practitioner said his lungs sounded clearer as time went by, so they cleared him for his last round of radiation! We are DONE!!!! Thank. You. God. One more thing finally behind us.
I said I would fill everyone in on our concerns with the kidney, so here you go:
Clayton's radiation dose is 2100 grey. The only organ in the abdomen that cannot safely handle that dose is the kidney. All of the other organs can handle much more than 2100 grey, but the kidney can only safely handle 1800 grey. Because the tumor butted up against the kidney's surface though it is necessary to radiate it. Technically a person can function with only one-third of one kidney, but we do not want to chance that, so they have designed the radiation so that at least two-thirds of his kidney receive 1800 grey or less. The radiologist here said that COG hospitals treat the entire kidney with 2100 grey...good for us we are here; I have met children who have one kidney because they lost one after radiation at a COG hospital! We don't have one to lose...
Anyway, I attached a picture of the actual plan from Clayton's radiation for those interested. It tells you based on the colored lines, which areas will receive which strength of radiation. Percentages are based off of the 2100 grey dosage. So if the line shows the area within it gets 90% then it is getting 90% of the 2100 grey dose. (The picture is looking up at Clayton's abdomen from his feet. His kidney is represented by the orange circle-like figure.)
By doing his radiation in two low dose rounds a day rather than one high dose round a day, the radiologist said we are minimizing our chance of any long term side effects. She is also optimistic that we will not see any kidney damage, but if there were damage, it could be four to five months before we would see it.
We of course did not have to do the radiation, as with everything we have a choice. However, without radiation, the chance it will relapse in is abdomen is 50%, with the radiation the chance of relapse in his abdomen is 10%. That does not include the risk of relapse anywhere else in his body, just his abdomen. The overall relapse rate is unfortunately much higher, BUT we have helped our chances by doing the radiation...that's something.
We are done though! Please pray his kidney does not suffer any damage!
Check out the door to the radiation room...it's like a foot wide!
Oh, and when they get ready to do radiation every round we have to look at a picture they took and verify who he is.
And with his cough he had to be isolated this week, so he has been cruising the hospital corridors like this:
Foot popped out and all. This boy is not scared to kick back and get comfy. So sweet!
I said I would fill everyone in on our concerns with the kidney, so here you go:
Clayton's radiation dose is 2100 grey. The only organ in the abdomen that cannot safely handle that dose is the kidney. All of the other organs can handle much more than 2100 grey, but the kidney can only safely handle 1800 grey. Because the tumor butted up against the kidney's surface though it is necessary to radiate it. Technically a person can function with only one-third of one kidney, but we do not want to chance that, so they have designed the radiation so that at least two-thirds of his kidney receive 1800 grey or less. The radiologist here said that COG hospitals treat the entire kidney with 2100 grey...good for us we are here; I have met children who have one kidney because they lost one after radiation at a COG hospital! We don't have one to lose...
Anyway, I attached a picture of the actual plan from Clayton's radiation for those interested. It tells you based on the colored lines, which areas will receive which strength of radiation. Percentages are based off of the 2100 grey dosage. So if the line shows the area within it gets 90% then it is getting 90% of the 2100 grey dose. (The picture is looking up at Clayton's abdomen from his feet. His kidney is represented by the orange circle-like figure.)
By doing his radiation in two low dose rounds a day rather than one high dose round a day, the radiologist said we are minimizing our chance of any long term side effects. She is also optimistic that we will not see any kidney damage, but if there were damage, it could be four to five months before we would see it.
We of course did not have to do the radiation, as with everything we have a choice. However, without radiation, the chance it will relapse in is abdomen is 50%, with the radiation the chance of relapse in his abdomen is 10%. That does not include the risk of relapse anywhere else in his body, just his abdomen. The overall relapse rate is unfortunately much higher, BUT we have helped our chances by doing the radiation...that's something.
We are done though! Please pray his kidney does not suffer any damage!
Check out the door to the radiation room...it's like a foot wide!
Oh, and when they get ready to do radiation every round we have to look at a picture they took and verify who he is.
And with his cough he had to be isolated this week, so he has been cruising the hospital corridors like this:
Foot popped out and all. This boy is not scared to kick back and get comfy. So sweet!
July 18, 2012
July 18, 2012
We have made it to the last day of radiation! Wouldn't you know it though we've hit a speed bump. It started when Clayton started coughing over the weekend, so we took him to the urgent care center here at MSKCC on Sunday to make sure he would be ok for anesthesia (for radiation) on Monday and maybe be put on an antibiotic to make sure nothing got worse. They did not put him on an antibiotic, but they did x-ray his lungs and they looked fine. So off we went.
Thank God, his four rounds of radiation over Monday and Tuesday went fine. However, after this morning's radiation, they reported that his oxygen levels dropped while he was sedated. He has been coughing and hacking some stuff up, but it comes and goes; sometimes he is fine. So now we are hanging out in the isolation room, waiting on them to do a breathing treatment on Clayton and to hopefully report that he can finish his last round of radiation this afternoon. We are so close!
Thank God, his four rounds of radiation over Monday and Tuesday went fine. However, after this morning's radiation, they reported that his oxygen levels dropped while he was sedated. He has been coughing and hacking some stuff up, but it comes and goes; sometimes he is fine. So now we are hanging out in the isolation room, waiting on them to do a breathing treatment on Clayton and to hopefully report that he can finish his last round of radiation this afternoon. We are so close!
July 13, 2012
July 15, 2012
One more week of treatment is finally behind us! Chemo...done. Radiation...only three days to go. Progress.
So we're doing good. Clayton is doing good. He handled everything last week so much better than expected. The nausea has been minimal and he has only vomitted once. Both chemo and radiation should only have mild side effects, but we'll have to see what the combination of the two do. I was talking to a fellow neuroblastoma mom the other day who said for her daughter the nausea caught up with her after the radiation. The good news is that while his WBC dropped from Monday to Wednesday, they have since started to go up. His hemoglobin is also holding out good now at 9.3. His platelets however, are still dropping so we'll have to watch them. His appetite has not been as good as it was before and there has been so much time he was not allowed to eat that he has lost a little bit of weight; you can see the knobby knees again. He'll gain it right back though.
I've started to blog so many times over the past week, but I have so much spinning in my head nothing that comes out makes sense. It has been an interesting trip this time; I suppose it always is, but this time I've learned a good bit. I think I am still processing a lot of things. Being in the clinic is very different than being outpatient; you see and hear a lot more. So being in the clinic everyday has been...eye opening.
Between processing and my insomnia up here I have yet to find myself in a position to thoroughly update everyone on what is to come. Nothing new, I just have more insight on what we already have planned. I am up for sharing that provided everything goes as planned (which rarely happens) then our schedule will be to come home on the 23rd or 24th and then come back up here on the 29th to start 3f8 on the 30th. We will be doing 3f8 from Monday the 30th to Friday the 3rd and then come home the 4th or 5th. Are you ready for this? Then we will get to be home for three FULL weeks! Then back to NYC for round 2 of 3f8 (each round is one week), then home for three weeks, back to NYC for round 3, then home for three weeks, back to NYC for round 4, then...wait for it...home for 8 weeks! AMAZING! We might actually have a life again!
Once we reach that point we (God willing) won't have to do anything other then coming to NYC every couple months or so for a while; then every three months and then we pray only every six months! And as time passes, rather than come for a week, we will only have to come for three or four days! Of course there is always a chance that something could throw a kink in all of this, so please pray that things go smoothly with minimal (or no) complications. A huge concern in the coming months will of course be his kidney and how it handles radiation (I'll elaborate in another post).
For now we are trying to enjoy things and make the most of things by getting out and doing stuff when we can. I signed us up for a ZipCar over the weekend and I am so excited about it. It is this awesome thing where we can reserve a car when we need it and we can have it for an hour or for a few days or whatever we need. Sounds like a car rental huh? It's similar, but better! It works out to be more cost effective and it includes gas and full coverage in the event of an accident and they have lots of cars all over the city. It will be perfect for all our trips over the coming year, it's pay-as-you-go and we can cancel our membership at anytime. I am so excited, because I feel like it gives us more freedom. We are going to see about taking a day trip over the coming weekend to the coast up around the Hamptons. I am so excited! I hope the drive is nice; it's like an hour and half. We even found a boat that George can go on a four hour fishing excursion for less than $60 bucks. That rocks! A little something fun for both of us.
Thank you to everyone at work for the birthday card! I've been forgetting to add that in here...and a special thanks to some awesome ladies for my other birthday card! ;)
AND Clayton finally got to play with Zoey! Clayton of course needs lessons in sharing...
So we're doing good. Clayton is doing good. He handled everything last week so much better than expected. The nausea has been minimal and he has only vomitted once. Both chemo and radiation should only have mild side effects, but we'll have to see what the combination of the two do. I was talking to a fellow neuroblastoma mom the other day who said for her daughter the nausea caught up with her after the radiation. The good news is that while his WBC dropped from Monday to Wednesday, they have since started to go up. His hemoglobin is also holding out good now at 9.3. His platelets however, are still dropping so we'll have to watch them. His appetite has not been as good as it was before and there has been so much time he was not allowed to eat that he has lost a little bit of weight; you can see the knobby knees again. He'll gain it right back though.
I've started to blog so many times over the past week, but I have so much spinning in my head nothing that comes out makes sense. It has been an interesting trip this time; I suppose it always is, but this time I've learned a good bit. I think I am still processing a lot of things. Being in the clinic is very different than being outpatient; you see and hear a lot more. So being in the clinic everyday has been...eye opening.
Between processing and my insomnia up here I have yet to find myself in a position to thoroughly update everyone on what is to come. Nothing new, I just have more insight on what we already have planned. I am up for sharing that provided everything goes as planned (which rarely happens) then our schedule will be to come home on the 23rd or 24th and then come back up here on the 29th to start 3f8 on the 30th. We will be doing 3f8 from Monday the 30th to Friday the 3rd and then come home the 4th or 5th. Are you ready for this? Then we will get to be home for three FULL weeks! Then back to NYC for round 2 of 3f8 (each round is one week), then home for three weeks, back to NYC for round 3, then home for three weeks, back to NYC for round 4, then...wait for it...home for 8 weeks! AMAZING! We might actually have a life again!
Once we reach that point we (God willing) won't have to do anything other then coming to NYC every couple months or so for a while; then every three months and then we pray only every six months! And as time passes, rather than come for a week, we will only have to come for three or four days! Of course there is always a chance that something could throw a kink in all of this, so please pray that things go smoothly with minimal (or no) complications. A huge concern in the coming months will of course be his kidney and how it handles radiation (I'll elaborate in another post).
For now we are trying to enjoy things and make the most of things by getting out and doing stuff when we can. I signed us up for a ZipCar over the weekend and I am so excited about it. It is this awesome thing where we can reserve a car when we need it and we can have it for an hour or for a few days or whatever we need. Sounds like a car rental huh? It's similar, but better! It works out to be more cost effective and it includes gas and full coverage in the event of an accident and they have lots of cars all over the city. It will be perfect for all our trips over the coming year, it's pay-as-you-go and we can cancel our membership at anytime. I am so excited, because I feel like it gives us more freedom. We are going to see about taking a day trip over the coming weekend to the coast up around the Hamptons. I am so excited! I hope the drive is nice; it's like an hour and half. We even found a boat that George can go on a four hour fishing excursion for less than $60 bucks. That rocks! A little something fun for both of us.
Thank you to everyone at work for the birthday card! I've been forgetting to add that in here...and a special thanks to some awesome ladies for my other birthday card! ;)
AND Clayton finally got to play with Zoey! Clayton of course needs lessons in sharing...
July 12, 2012
July 10 & 11, 2012
Two days and four rounds of radiation down; five more days and ten more rounds to go. Right now, we get to the hospital every morning at 7 am before starting radiation at 8 am. Clayton is usually finished with radiation and transferred back upstairs to the Peds floor to wake up from sedation by 8:30ish; waking up from sedation actually takes the longer than the radiation. Afterwards we go to the day hospital area and settle into our couch to start preparing for his daily low-dose chemo. We spend the next few hours prepping for the chemo and meeting with the neuroblastoma nurse practitioner before we head back downstairs for the day's second round of radiation at 12:45. Afterwards it is back up to the Peds floor for recovery from sedation, then over to the day hospital for his oral chemo. Then we're done! We usually make it back to the Ronald around 2:30ish.
Clayton has always handled everything very well, but doing things outpatient up here is a very different environment than anything else and I have been super proud of him for how he's done with it. He is doing good with this chemo too. No bad nausea right now. I am anxious to see if the effects of the chemo and the radiation catch up to him next week like it has been suggested they will; and if so how bad it will be. The chemo we are doing is not suppose to be enough to affect his counts to much, but they have dropped since Monday. Monday his WBC was 5.5, today it was 3.5; his hemoglobin was 8.9, today it is 8.4; and his platelets were 232, today they are 192. So they are definitely going down. I am hoping that they (mostly platelets) will not drop low enough to trigger any more hemorrhagic cystitis. This chemo does not affect his bladder, but if his platelets drop too low, that could affect old lesions. Also, George has been sick, and I am starting to not feel well myself, so if it is anything other than allergies, we have to be OCD about germs because Clayton will more than likely be neutropenic on some level; though not as severe as with previous chemo regimens. Problem is we don't know if it is a cold or just allergies; George did go to the doctor yesterday and got some medicine, so hopefully he is on the mend.
As far as Clayton's spirit, it's still intact. For the most part he is still very active overall. While we are in the hospital he tends to be sitting in he stroller or laying on the couch, but back at the Ronald he is all over the place. Playful, happy, active, eating, drinking; he's doing great! Oh, and last Friday he weighed in at 42 lbs; he was 40.9 lbs before chemo and that was with a massive tumor in his belly. It's all him now! And his precious little knees no longer look knobby. Since putting weight back on, his legs are filling out again and they look so good!
Clayton has always handled everything very well, but doing things outpatient up here is a very different environment than anything else and I have been super proud of him for how he's done with it. He is doing good with this chemo too. No bad nausea right now. I am anxious to see if the effects of the chemo and the radiation catch up to him next week like it has been suggested they will; and if so how bad it will be. The chemo we are doing is not suppose to be enough to affect his counts to much, but they have dropped since Monday. Monday his WBC was 5.5, today it was 3.5; his hemoglobin was 8.9, today it is 8.4; and his platelets were 232, today they are 192. So they are definitely going down. I am hoping that they (mostly platelets) will not drop low enough to trigger any more hemorrhagic cystitis. This chemo does not affect his bladder, but if his platelets drop too low, that could affect old lesions. Also, George has been sick, and I am starting to not feel well myself, so if it is anything other than allergies, we have to be OCD about germs because Clayton will more than likely be neutropenic on some level; though not as severe as with previous chemo regimens. Problem is we don't know if it is a cold or just allergies; George did go to the doctor yesterday and got some medicine, so hopefully he is on the mend.
As far as Clayton's spirit, it's still intact. For the most part he is still very active overall. While we are in the hospital he tends to be sitting in he stroller or laying on the couch, but back at the Ronald he is all over the place. Playful, happy, active, eating, drinking; he's doing great! Oh, and last Friday he weighed in at 42 lbs; he was 40.9 lbs before chemo and that was with a massive tumor in his belly. It's all him now! And his precious little knees no longer look knobby. Since putting weight back on, his legs are filling out again and they look so good!
July 10, 2012
July 9, 2012
We got to the pediatric day floor around 10:30 to do chemo today. Because it is such a busy week, we didn't have a room; instead we grabbed the only available couch in front of the nurses station. With three other families around us, we got Clayton going with some hydration, pre-meded him with some nausea meds and then waited on the chemo. We were right between the "everything" rooms for the day hospital and the much smaller wing of rooms for antibody treatment. Doctors, nurses, parents and kids were all criss-crossing the hall in front of us going from one wing to the next or from the day clinic to the day hospital and back again. There was so much going on; so many different stories playing out as we sat there with Clayton's IV pump pushing "poison" in his veins once again. The whole scene was surreal. We've been there many times, but that was the first time we have been treated on that side of the day hospital; we usually stay on the clinic side. It's the difference between kids who appear to generally feel fine verses kids who are nauseas, trying to sleep and like Clayton all seem to want to hide under a blanket.
In the midst of it all, Clayton is just as happy as he can be. Standing on the couch laughing and pointing at things. When a nurse would come to mess with him he would fuss for a minute then find refuge under the covers for a bit before coming back out to check on things. Even when he started the chemo, it didn't phase him. He was so happy it almost made us forget where we were. Things seemed normal...well maybe not normal, but they seemed to be running smoothly.
Then the alarms from a nearby room started going off. They only lasted maybe 20 seconds. But for the next ten minutes, doctors and nurses were coming from every direction. It happened very quick. The alarm went off, a nurse hollered she needed help, at first no one ran, instead they seemed confused, then they started to get respiratory supplies, shortly after someone went whizzing by with a respiratory cart of some sort; from there people just started flooding in the room. Nurses, parents and even doctors were left in the hall in front of us, all wondering what had happened. We could hear nurses asking if the rapid response team had been paged. Nurse practitioners, respiratory therapists, surgeons, doctors we've never seen, all made up a steady stream of people going by us. After twenty minutes or so people slowly went back to what they were doing and the patient was taken somewhere else. I still have no idea what happened, but it was obviously serious and unexpected.
My first thought when I realized something was going on -apart from "what's happening"- was, "just when you start to feel safe...". We can't just have a good day or a nice break at home. Alarms will sound or I'll learn about a little girl that lost her battle or something will happen to snap us back to reality. Clayton was just so happy and then that and my mind is off with a million thoughts swirling through my head. It's a cruel reminder for all the parents that witnessed it that when going through this process something could happen anywhere along the way.
Just the other day, I read about a boy who beat neuroblastoma just to develop secondary leukemia from the chemo. He had to then undergo a bone bone marrow transplant with marrow from a donor and while his cells were engrafting, he silently passed away in the night. Sadly, his organs failed his little body. His father woke to find his son surrounded by doctors and within minutes the doctors called the time of death. Everyone was shocked, he was doing so good, no one saw it coming. Can you imagine being that father? You tell your child "I love you" and "goodnight" and you wake to find doctors trying to resuscitate him. All this time y'all have been fighting this horrible disease and that is how it ends; when everything seemed fine! Maybe it's better that way; peaceful. Wait. No. There is no "better way" to lose a child. It is frightening that as quickly as this nightmare can begin it can end and a parent can then be forced to live another nightmare; life without the thing most dear to them. You never get use to that and every time you get relief from it, some awful reminder is just lurking around the corner. Learning to expect the unexpected is part of living in this world. Yet, you are somehow never quite prepared. It was particularly eerie that when we were checking in with the neuroblastoma nurse practitioner today, I saw that little boy's bracelet sitting on top of the desk; right on top of Clayton's papers. You know, the rubber bracelets kind of like Clayton's gold one.
As we sat there today, I even found myself content to ignore the fact that we were right beside the wing designated for antibody treatment. I didn't think too much about it. After the craziness though, I found myself straining my ears to hear whatever I could. It's like I feel as though the more I know about everything the better I can prepare or control the outcome; that of course is an illusion. I have no control; if I did, we wouldn't be here.
It is just so insane to think that at 3, 26 and 30 our family is going through this. And tomorrow begins radiation...
Oh, and throughout all of this, George was out of his mind on cold medicine...I mean LOOPY...
In the midst of it all, Clayton is just as happy as he can be. Standing on the couch laughing and pointing at things. When a nurse would come to mess with him he would fuss for a minute then find refuge under the covers for a bit before coming back out to check on things. Even when he started the chemo, it didn't phase him. He was so happy it almost made us forget where we were. Things seemed normal...well maybe not normal, but they seemed to be running smoothly.
Then the alarms from a nearby room started going off. They only lasted maybe 20 seconds. But for the next ten minutes, doctors and nurses were coming from every direction. It happened very quick. The alarm went off, a nurse hollered she needed help, at first no one ran, instead they seemed confused, then they started to get respiratory supplies, shortly after someone went whizzing by with a respiratory cart of some sort; from there people just started flooding in the room. Nurses, parents and even doctors were left in the hall in front of us, all wondering what had happened. We could hear nurses asking if the rapid response team had been paged. Nurse practitioners, respiratory therapists, surgeons, doctors we've never seen, all made up a steady stream of people going by us. After twenty minutes or so people slowly went back to what they were doing and the patient was taken somewhere else. I still have no idea what happened, but it was obviously serious and unexpected.
My first thought when I realized something was going on -apart from "what's happening"- was, "just when you start to feel safe...". We can't just have a good day or a nice break at home. Alarms will sound or I'll learn about a little girl that lost her battle or something will happen to snap us back to reality. Clayton was just so happy and then that and my mind is off with a million thoughts swirling through my head. It's a cruel reminder for all the parents that witnessed it that when going through this process something could happen anywhere along the way.
Just the other day, I read about a boy who beat neuroblastoma just to develop secondary leukemia from the chemo. He had to then undergo a bone bone marrow transplant with marrow from a donor and while his cells were engrafting, he silently passed away in the night. Sadly, his organs failed his little body. His father woke to find his son surrounded by doctors and within minutes the doctors called the time of death. Everyone was shocked, he was doing so good, no one saw it coming. Can you imagine being that father? You tell your child "I love you" and "goodnight" and you wake to find doctors trying to resuscitate him. All this time y'all have been fighting this horrible disease and that is how it ends; when everything seemed fine! Maybe it's better that way; peaceful. Wait. No. There is no "better way" to lose a child. It is frightening that as quickly as this nightmare can begin it can end and a parent can then be forced to live another nightmare; life without the thing most dear to them. You never get use to that and every time you get relief from it, some awful reminder is just lurking around the corner. Learning to expect the unexpected is part of living in this world. Yet, you are somehow never quite prepared. It was particularly eerie that when we were checking in with the neuroblastoma nurse practitioner today, I saw that little boy's bracelet sitting on top of the desk; right on top of Clayton's papers. You know, the rubber bracelets kind of like Clayton's gold one.
As we sat there today, I even found myself content to ignore the fact that we were right beside the wing designated for antibody treatment. I didn't think too much about it. After the craziness though, I found myself straining my ears to hear whatever I could. It's like I feel as though the more I know about everything the better I can prepare or control the outcome; that of course is an illusion. I have no control; if I did, we wouldn't be here.
It is just so insane to think that at 3, 26 and 30 our family is going through this. And tomorrow begins radiation...
Oh, and throughout all of this, George was out of his mind on cold medicine...I mean LOOPY...
July 9, 2012
July 8, 2012
We've had a good weekend. Yesterday, we took the water taxi to Ikea which was awesome! Ikea was awesome. The water taxi was awesome. It was great. I tell you that store is an experience, even George was fascinated. The water taxi was so great because one it was FREE and two it was a great way to get some good views of the island, the Statue of Liberty and Brooklyn among other things. Definitely ranked as one of our best family outings here in NYC.
Today we decided to take Clayton to the Manhattan Children's museum. We had a nice long walk through the park to get to the museum on the west side. The museum itself was so-so. It had an Explorium feel to it, but not as clean. We wont go back, but it was a nice outing. We did bump in to a fellow we loved from Clayton's time in the PICU at New York Presbyterian; that was nice. Afterwards, we walked back through the park to the Central Park Zoo for lunch- thankfully Clayton fell asleep so we were able to sit down and eat...a rare treat. Then we got back to the RMH were the front desk surprised me with cupcakes the ladies from work had delivered to me! And to cap the day off, Clayton's Uncle Mickey and Aunt Shania (George's brother and his wife) that live in Brooklyn came by to visit and watch Clayton while George and I grabbed dinner at my favorite restaurant! They brought me flowers, a little cake, and sang me happy birthday. It was a good day!
Today we decided to take Clayton to the Manhattan Children's museum. We had a nice long walk through the park to get to the museum on the west side. The museum itself was so-so. It had an Explorium feel to it, but not as clean. We wont go back, but it was a nice outing. We did bump in to a fellow we loved from Clayton's time in the PICU at New York Presbyterian; that was nice. Afterwards, we walked back through the park to the Central Park Zoo for lunch- thankfully Clayton fell asleep so we were able to sit down and eat...a rare treat. Then we got back to the RMH were the front desk surprised me with cupcakes the ladies from work had delivered to me! And to cap the day off, Clayton's Uncle Mickey and Aunt Shania (George's brother and his wife) that live in Brooklyn came by to visit and watch Clayton while George and I grabbed dinner at my favorite restaurant! They brought me flowers, a little cake, and sang me happy birthday. It was a good day!
July 7, 2012
July 7, 2012
Hot, Hot, Hot! That is pretty much the forecast up here for now. So in an effort to stay indoors- and for my birthday- we are going to make a day trip to Ikea! I'm pumped. It'll be fun though because we have to take a taxi to the South Street Seaport area and then we have to catch a water taxi. So it should be a nice sightseeing extravaganza no matter what...more later.
July 6, 2012
July 6, 2012
The nephrostomy tube is OUT!
AND the doctor said the hydronephrosis looks better!
AND they changed his Hickman dressing and his supra pubic catheter dressing while he was sleeping. That's a win win for everybody!
AND they gave him a manicure...kinda. I about died when George asked the doctor if she could cut Clayton's finger-nails while he was asleep, but I reckon it paid off because along with everything else, the doctor reported she trimmed his nails and brushed underneath them too ;)
Never know what to expect these days. We had a chip-n-dale's flight attendant yesterday and a doctor giving manicures today!
AND the doctor said the hydronephrosis looks better!
AND they changed his Hickman dressing and his supra pubic catheter dressing while he was sleeping. That's a win win for everybody!
AND they gave him a manicure...kinda. I about died when George asked the doctor if she could cut Clayton's finger-nails while he was asleep, but I reckon it paid off because along with everything else, the doctor reported she trimmed his nails and brushed underneath them too ;)
Never know what to expect these days. We had a chip-n-dale's flight attendant yesterday and a doctor giving manicures today!
July 5, 2012
We made it! Interesting trip. Clayton decided he was extra curious today and kept wanting to put his hands in between the seats. But the most fun was when he decided that the guy's head in front of him needed to be poked. He didn't want to give that one up.
I knew we got spoiled when he slept through his first few flights...
I knew we got spoiled when he slept through his first few flights...
July 5, 2012
July 5, 2012
And we're off... Headed back to NYC to have his nephrostomy tube removed Friday morning and start radiation and a low dose round of chemo on Monday. For now, I'm just glad George and I can carry the burden of knowing what is coming and Clayton can remain care free...for now...
We did have a quiet few days at home though which was awesome! It really gave Clayton what he needed to get active again and regain his strength and his spirit.
We did have a quiet few days at home though which was awesome! It really gave Clayton what he needed to get active again and regain his strength and his spirit.
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