Frustrating day today. We received the initial blood results on the transplant and it seems JT’s strong immune system is fighting Sydney’s bone marrow tooth & nail. The doctors are not happy with the results and we are bummed to say the least.
They prescribed JT another immunosuppressive drug today called Mycophenolate that he will take 3 times a day in hopes that it lowers his immune system more so Sydney’s marrow can get in there and fight to take over. Right now, it shows 7% “Sydney cells” and they were hoping for at least 25% at this stage. They took another blood draw today and will re-run the test to validate the accuracy.
When those results come back, we will re-evaluate our options. Right now it looks like within the next couple of weeks, Sydney will go back in and give platelets to JT in the hopes that combined with the new medication it will be enough of a boost to get this transplant heading in the right direction.
Not a great start to the weekend, but on a positive note, Jim returned today from a week of working in Wisconsin so we’re glad to have him back before we start this new procedure.
Keeping the faith! Thanks as always for all your prayers!
xo Sabrina
Friday, April 30
Sunday, April 25
Modern Medicine
Tonight marks two weeks of JT sleeping in his own bed! Amazing isn’t it? He continues to improve each day and he continues to generate new and interesting side effects as well. During the last two weeks, he has officially lost his hair that he hung on to for so long at the hospital. Just on his head though, I was surprised. They tell us the Cyclosporine that he is on actually causes hair growth so we need to expect it at some time. They said it usually shows up on the face and back which I thought didn’t sound so bad, but then I understood why it’s such a big deal when they reminded me that the female patients don’t care for it too much! Another side effect of the Cyclosporine has been increased blood pressure. They decided to put him on medication at our last visit since he has not shown any signs of it dropping. I was relieved to know that I did not cause it! And lastly, with this medication, it can cause damage to the kidneys and he has had to force himself to drink at least 64 ounces a day of fluids and has been taking magnesium supplements to help his kidneys flush everything out.
Lots of pills although we have managed to keep it to twice a day and it’s pretty tolerable. He takes 100mg of Cyclosporine in the form of a giant horse pill twice a day. He takes three 100mg Diflucan to prevent infection once a day. He takes three 250mg Magnesium pills twice a day for the kidneys. He takes one 5mg Norvasc for blood pressure once a day. He takes one Valtrax twice a day for mouth sores. Beginning Monday, he will add 160mg Bactrim twice a day to prevent infection and he continues his daily shot of Lovenox, the blood thinner, until we know whose blood his body is making. We visit the clinic two to three times a week and they monitor his counts very closely and have made quite a few adjustments to the dosage and amounts of medications. Modern medicine at its best!
These are all oral meds but he has his CVL in if we need it. The CVL requires being flushed 3 times a week by us along with a syringe of Heparin (another blood thinner) to keep the lines clean. We also change the dressing once a week and change the caps to the CVL’s. I have the flush thing down, but the dressing change is still a little rattling for me. It’s very important to keep a sterile environment down to how you can put the gloves on, to how long you clean the site, to how much air you expose it to. If I’m not exact, then I run the risk of giving him a pretty nasty blood infection that I’d rather not do. I’ve had help from the nurses up until now, but tomorrow is my first time doing it alone – wish me luck!
Another interesting “ah ha” moment during one of our doctor visits was the realization that he has a brand new immune system and when he is cured and the blood counts are back to normal, he will have to go through immunizations all over again for his “baby blood”.
So where do we go from here? Basically it’s a “wait and see” game. They wait until Day 30 before running the blood test to determine whose blood JT is making. Our appointment on Friday was Day 29, so they decided to go ahead and do it early. The test takes 10-14 days to come back and it will tell us what percentage of blood is Sydney’s and what is JT’s. The hope is to have the greater percentage as Sydney. This test will be done monthly with the ultimate goal of having it be 100% Sydney at some point in the coming year. In the meantime, we continue to watch for infections, “graft versus host” disease (symptoms of his body fighting off her blood cells) and complications from the medicines. But now we get to do this from the comfort of our own home! He does not have an immune system that is able to fight infection so he is limited to his visitors, whether you are sick or have any sick family members, he cannot travel except back and forth to the hospital, he has to wear a mask outside the house, he is not able to eat any fresh fruit/vegetables, fast food or restaurant food and he has to continue his “walks” to build back up his strength. Oh yeah, and he continues his school from home!
Thank you to everyone who has been following his progress so far. We are extremely grateful for the continued prayers, cards, Facebook well wishes and words of encouragement! Have a great week!
XO Sabrina
Lots of pills although we have managed to keep it to twice a day and it’s pretty tolerable. He takes 100mg of Cyclosporine in the form of a giant horse pill twice a day. He takes three 100mg Diflucan to prevent infection once a day. He takes three 250mg Magnesium pills twice a day for the kidneys. He takes one 5mg Norvasc for blood pressure once a day. He takes one Valtrax twice a day for mouth sores. Beginning Monday, he will add 160mg Bactrim twice a day to prevent infection and he continues his daily shot of Lovenox, the blood thinner, until we know whose blood his body is making. We visit the clinic two to three times a week and they monitor his counts very closely and have made quite a few adjustments to the dosage and amounts of medications. Modern medicine at its best!
These are all oral meds but he has his CVL in if we need it. The CVL requires being flushed 3 times a week by us along with a syringe of Heparin (another blood thinner) to keep the lines clean. We also change the dressing once a week and change the caps to the CVL’s. I have the flush thing down, but the dressing change is still a little rattling for me. It’s very important to keep a sterile environment down to how you can put the gloves on, to how long you clean the site, to how much air you expose it to. If I’m not exact, then I run the risk of giving him a pretty nasty blood infection that I’d rather not do. I’ve had help from the nurses up until now, but tomorrow is my first time doing it alone – wish me luck!
Another interesting “ah ha” moment during one of our doctor visits was the realization that he has a brand new immune system and when he is cured and the blood counts are back to normal, he will have to go through immunizations all over again for his “baby blood”.
So where do we go from here? Basically it’s a “wait and see” game. They wait until Day 30 before running the blood test to determine whose blood JT is making. Our appointment on Friday was Day 29, so they decided to go ahead and do it early. The test takes 10-14 days to come back and it will tell us what percentage of blood is Sydney’s and what is JT’s. The hope is to have the greater percentage as Sydney. This test will be done monthly with the ultimate goal of having it be 100% Sydney at some point in the coming year. In the meantime, we continue to watch for infections, “graft versus host” disease (symptoms of his body fighting off her blood cells) and complications from the medicines. But now we get to do this from the comfort of our own home! He does not have an immune system that is able to fight infection so he is limited to his visitors, whether you are sick or have any sick family members, he cannot travel except back and forth to the hospital, he has to wear a mask outside the house, he is not able to eat any fresh fruit/vegetables, fast food or restaurant food and he has to continue his “walks” to build back up his strength. Oh yeah, and he continues his school from home!
Thank you to everyone who has been following his progress so far. We are extremely grateful for the continued prayers, cards, Facebook well wishes and words of encouragement! Have a great week!
XO Sabrina
Saturday, April 10
Double Dog Dare
I wasn't even home after swapping off hospital duties with Jim on Friday when the hospital called..."Mrs. Webster, this is Children's Discharge Department and I'm calling you to make arrangements for JT's discharge on Monday".
After I rudely told her to "SHUT UP!", I quickly pulled over to talk sanely with her. Yes, its true, we are targeting Monday as a release date from BMT Prison!!! Nothing short of a miracle, because what we were led to believe in really good circumstances, JT would have been there for at least another 2 weeks. In fact, we are not even to the point yet in his recuperation that we know if Sydney's bone marrow has taken over yet! But since he's doing so good, vitals have been good, he continues to eat without the tube (although I have to admit the majority of the calories are coming from ice cream and M&M's) they are confident we can continue his care at home while taking him back & forth to the hospital 2-3 times a week for blood tests. I told you so many things can happen in a day in the BMT world! This day was all good!
Thank you God for listening to our family and friends prayers!
I dare anyone to knock this smile off my face!
After I rudely told her to "SHUT UP!", I quickly pulled over to talk sanely with her. Yes, its true, we are targeting Monday as a release date from BMT Prison!!! Nothing short of a miracle, because what we were led to believe in really good circumstances, JT would have been there for at least another 2 weeks. In fact, we are not even to the point yet in his recuperation that we know if Sydney's bone marrow has taken over yet! But since he's doing so good, vitals have been good, he continues to eat without the tube (although I have to admit the majority of the calories are coming from ice cream and M&M's) they are confident we can continue his care at home while taking him back & forth to the hospital 2-3 times a week for blood tests. I told you so many things can happen in a day in the BMT world! This day was all good!
Thank you God for listening to our family and friends prayers!
I dare anyone to knock this smile off my face!
Thursday, April 8
The Good, The Bad and The Ugly
Never a dull moment in the life of a bone marrow transplant patient! We’ve had some good moments, some bad moments and some darn right ugly moments in BMT prison. I’ll share some of those with you now. If you’re prone to queasy stomachs, then you can skip over the ugly parts. If you’re going to feel sorry for us, then you can skip over the bad parts. It’s our life and I want to document it because years from now when I’m talking about it with my Grandchildren, I don’t want my memory to be fuzzy and want to tell them how wonderful and brave their parents, Sydney & JT, are. From past experience, I tend to remember just the good stuff.
A day in the life of a transplant patient is never the same. In fact, the day can be good, bad and ugly all in the same day. Some days are all good, and maybe some days are just bad and ugly. So rather than just write about the individual days, I’ve decided it might be easier to write about what makes a day good…or bad…or ugly.
I’ll start with "The Ugly". Now is your time to skip to the next paragraph if you don't like ugly. JT has had to endure some pretty ugly moments that’s for sure! The worst has been the darn NG Tube I wrote about earlier. When he got sick from the chemo and couldn’t eat, they put the tube in, snaked it through the nose and down his esophagus into his stomach. It has been a constant tickle in the back of the throat and a source of frustration for him. Every time he sneezed or coughed, the tube would ride up and down. The nurses did their best by taping it to his face, but it wasn’t enough. During one particular hard sneeze, it came up high enough for him to start gagging on it…that brought on more spasms and finally the tube came all the way out. The nurse said it was good it came out the nose because a lot of kids have it come out the mouth and because of the cap on the IV end of it, you can’t pull it out your mouth or it will get stuck in the nostril. So a new tube went back in! The second time it came out, JT was in the room alone. I’m not sure what triggered that episode, but it came out his mouth this time. Rather than panicking, JT remembered the nurse’s conversation earlier and pulled the tube out through his nose. I asked him later if he was scared and he said "kind of, but I knew what to do". And then a third new tube went in! There are some conflicting reports on how this tube came out, but he did throw up and claims that although the tube did not come all the way out, he went ahead and pulled it. Ouch. By this time, he was trying to eat solid foods again and his NG feedings had been cut in half. That was two days ago and the doctors agreed that if he eats 1500 calories a day and keep it down; they would leave the tube out. It’s amazing how many calories of ice cream and Snicker bars a boy can eat to reach his goal! Another ugly side effect is the infections you can get when you don’t have any white blood cells to fight. JT got one they haven’t seen in a very long time and CDC’s Infectious Disease was called in to see what it was, how contagious it is, and how to treat it. Luckily, Neisseria Sicca Subflava was caught early and he experienced only a day of fever, nausea and general flu-like symptoms and they nipped it in the butt. The other ugliness of transplant that JT experiences includes tracking and measuring “everything” that comes in and out of his body, weird skin rashes & bumps, and last but not least, the blood transfusion needed when the blood counts drop so low you can’t get out of bed.
Moving on to some of "The Bad moments"…here’s your chance to skip over this paragraph as well! The bad moments include things like frustration he feels when he is sick. Despite the PNH and Type 1 Diabetes, JT really didn’t get sick a lot growing up. He is a pretty active kid and when he’s too tired and achy to get out of bed, he gets pretty frustrated. There is a lot we have to do to keep him healthy and unfortunately he is confined to do this in his room. He’s allowed to leave his room for only one thing, to do laps around the nurses’ station to keep his legs moving and his lungs healthy to prevent fluid building up in them. And he must do this wearing a mask. He hates the smell of it and the hot air of his breathing makes him sweat. We have a small window looking over the roof of the floors below us and the air-conditioning units. Off to the side, we can see a side walk and a pear tree and past the building we can see the sky. At least we have a window! It doesn't help when a well meaning doctor comes in to ask if he's been down to the garden because its beautiful outside. Because of JT’s CVL line, he is required to take baths to keep the line dry. Being a shower kind of kid, this has been hard for him to get used to. But until the line is removed, he goes through a process of taping it off with plastic, draping the IV lines over his shoulder, taping them up as well and sitting in the tub with the IV Pole to the side – not quite the Jacuzzi bath I’m used to soaking in! Speaking of the central line, it has to be cleaned once a week and have the protective dressing changed. I’ve only seen this done once, but will be trained before we leave because they anticipate keeping the line in for awhile. The process was mind boggling. We wear masks and gowns maintaining a sterile environment at all times. Where the line enters his body is the single most critical site for a risk of infection. It’s got to be hard for him to be cooped up like this. Can you believe we’ve been here 24 days already! The only other “bad” in my mind has been our experience with managing his diabetes and communicating with the Endocrinology team. I’m sure most BMT patients don’t go through some of the aggravations we have had, but I could write a whole other paragraph on this subject alone and digress from why we are here. Suffice it to say, mean Mom & Dad have been quite the advocate for JT’s insulin requirements and care and don’t mind standing up to these doctors on behalf of our wonderful BMT nurses!
And last but not least, The Good! Welcome back readers with the queasy stomachs (grin). I kept it PG if you change your mind and want to go back and read. The good has been the miracle of your prayers and well wishes over the past several weeks. The doctors are thrilled at the progress JT has been making. Despite the blips in the radar, they are amazed at how well he fights each obstacle he is faced with. There are so many things that can go wrong right now with infection, graft versus host disease, marrow rejection and what he has had to date have been just mild cases of each. Every time someone from the BMT walks in the room, the first thing they comment on is how good he looks, how well he has responded to the transplant and what a great attitude he has. The laps I keep mentioning are one of his “jobs”. They hope for 10. A nurse told JT that someone calculated 35 laps equal a mile. The next day, he walked a mile. The day after he walked two! Can you imagine 70 laps in a circle pulling an IV pole and huffing with a mask! He’s keeping up with his mouth care brushing his teeth four times a day and using a special rinse six times a day. The mouth is another high risk area for infection. He continues to keep up with his school work meeting almost every day with the hospital teachers working on assignments from Simpson Middle School. I have no doubt he will complete 7th Grade on time and if his progress remains on the same path as it is, he’ll be starting 8th Grade as we hoped back in school with his friends this August! Our doctor told me today we are experiencing a near-perfect transplant so far. Thank you God!
So after a long winded recap of The Good, The Bad and The Ugly over the last two weeks, I can’t leave without mentioning Sydney as well. She paid the price for her fun weekend I wrote about in the previous entry. She was very sore during the week and had a hard time getting ahead of the pain. She took a day off on Thursday to sleep & heal and made it back to school to finish the week before Spring Break came. I also mentioned that she was interviewed while at East Cobb Park and the article made it into the Atlanta newspaper! I hope you can view it at http://www.ajc.com/lifestyle/atlanta-springtime-allows-for-426828.html we're so proud of her!
xo Sabrina
A day in the life of a transplant patient is never the same. In fact, the day can be good, bad and ugly all in the same day. Some days are all good, and maybe some days are just bad and ugly. So rather than just write about the individual days, I’ve decided it might be easier to write about what makes a day good…or bad…or ugly.
I’ll start with "The Ugly". Now is your time to skip to the next paragraph if you don't like ugly. JT has had to endure some pretty ugly moments that’s for sure! The worst has been the darn NG Tube I wrote about earlier. When he got sick from the chemo and couldn’t eat, they put the tube in, snaked it through the nose and down his esophagus into his stomach. It has been a constant tickle in the back of the throat and a source of frustration for him. Every time he sneezed or coughed, the tube would ride up and down. The nurses did their best by taping it to his face, but it wasn’t enough. During one particular hard sneeze, it came up high enough for him to start gagging on it…that brought on more spasms and finally the tube came all the way out. The nurse said it was good it came out the nose because a lot of kids have it come out the mouth and because of the cap on the IV end of it, you can’t pull it out your mouth or it will get stuck in the nostril. So a new tube went back in! The second time it came out, JT was in the room alone. I’m not sure what triggered that episode, but it came out his mouth this time. Rather than panicking, JT remembered the nurse’s conversation earlier and pulled the tube out through his nose. I asked him later if he was scared and he said "kind of, but I knew what to do". And then a third new tube went in! There are some conflicting reports on how this tube came out, but he did throw up and claims that although the tube did not come all the way out, he went ahead and pulled it. Ouch. By this time, he was trying to eat solid foods again and his NG feedings had been cut in half. That was two days ago and the doctors agreed that if he eats 1500 calories a day and keep it down; they would leave the tube out. It’s amazing how many calories of ice cream and Snicker bars a boy can eat to reach his goal! Another ugly side effect is the infections you can get when you don’t have any white blood cells to fight. JT got one they haven’t seen in a very long time and CDC’s Infectious Disease was called in to see what it was, how contagious it is, and how to treat it. Luckily, Neisseria Sicca Subflava was caught early and he experienced only a day of fever, nausea and general flu-like symptoms and they nipped it in the butt. The other ugliness of transplant that JT experiences includes tracking and measuring “everything” that comes in and out of his body, weird skin rashes & bumps, and last but not least, the blood transfusion needed when the blood counts drop so low you can’t get out of bed.
Moving on to some of "The Bad moments"…here’s your chance to skip over this paragraph as well! The bad moments include things like frustration he feels when he is sick. Despite the PNH and Type 1 Diabetes, JT really didn’t get sick a lot growing up. He is a pretty active kid and when he’s too tired and achy to get out of bed, he gets pretty frustrated. There is a lot we have to do to keep him healthy and unfortunately he is confined to do this in his room. He’s allowed to leave his room for only one thing, to do laps around the nurses’ station to keep his legs moving and his lungs healthy to prevent fluid building up in them. And he must do this wearing a mask. He hates the smell of it and the hot air of his breathing makes him sweat. We have a small window looking over the roof of the floors below us and the air-conditioning units. Off to the side, we can see a side walk and a pear tree and past the building we can see the sky. At least we have a window! It doesn't help when a well meaning doctor comes in to ask if he's been down to the garden because its beautiful outside. Because of JT’s CVL line, he is required to take baths to keep the line dry. Being a shower kind of kid, this has been hard for him to get used to. But until the line is removed, he goes through a process of taping it off with plastic, draping the IV lines over his shoulder, taping them up as well and sitting in the tub with the IV Pole to the side – not quite the Jacuzzi bath I’m used to soaking in! Speaking of the central line, it has to be cleaned once a week and have the protective dressing changed. I’ve only seen this done once, but will be trained before we leave because they anticipate keeping the line in for awhile. The process was mind boggling. We wear masks and gowns maintaining a sterile environment at all times. Where the line enters his body is the single most critical site for a risk of infection. It’s got to be hard for him to be cooped up like this. Can you believe we’ve been here 24 days already! The only other “bad” in my mind has been our experience with managing his diabetes and communicating with the Endocrinology team. I’m sure most BMT patients don’t go through some of the aggravations we have had, but I could write a whole other paragraph on this subject alone and digress from why we are here. Suffice it to say, mean Mom & Dad have been quite the advocate for JT’s insulin requirements and care and don’t mind standing up to these doctors on behalf of our wonderful BMT nurses!
And last but not least, The Good! Welcome back readers with the queasy stomachs (grin). I kept it PG if you change your mind and want to go back and read. The good has been the miracle of your prayers and well wishes over the past several weeks. The doctors are thrilled at the progress JT has been making. Despite the blips in the radar, they are amazed at how well he fights each obstacle he is faced with. There are so many things that can go wrong right now with infection, graft versus host disease, marrow rejection and what he has had to date have been just mild cases of each. Every time someone from the BMT walks in the room, the first thing they comment on is how good he looks, how well he has responded to the transplant and what a great attitude he has. The laps I keep mentioning are one of his “jobs”. They hope for 10. A nurse told JT that someone calculated 35 laps equal a mile. The next day, he walked a mile. The day after he walked two! Can you imagine 70 laps in a circle pulling an IV pole and huffing with a mask! He’s keeping up with his mouth care brushing his teeth four times a day and using a special rinse six times a day. The mouth is another high risk area for infection. He continues to keep up with his school work meeting almost every day with the hospital teachers working on assignments from Simpson Middle School. I have no doubt he will complete 7th Grade on time and if his progress remains on the same path as it is, he’ll be starting 8th Grade as we hoped back in school with his friends this August! Our doctor told me today we are experiencing a near-perfect transplant so far. Thank you God!
So after a long winded recap of The Good, The Bad and The Ugly over the last two weeks, I can’t leave without mentioning Sydney as well. She paid the price for her fun weekend I wrote about in the previous entry. She was very sore during the week and had a hard time getting ahead of the pain. She took a day off on Thursday to sleep & heal and made it back to school to finish the week before Spring Break came. I also mentioned that she was interviewed while at East Cobb Park and the article made it into the Atlanta newspaper! I hope you can view it at http://www.ajc.com/lifestyle/atlanta-springtime-allows-for-426828.html we're so proud of her!
xo Sabrina
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