Went to the doctor yesterday and the initial verbal results from last week’s cell test came back saying JT 100% - Sydney 0%. To say we are disappointed would be an understatement. Plan of attack will be to wean JT off the immunosuppressive drugs over the next two weeks. Give his body a little rest, and then go for Round 2 with a second transplant at the end of July.
Things you shouldn’t really say to your Doctor…
1. Doc: “How is the donor feeling? Is she having any guilt?”. Me: “Of course she doesn’t feel guilty, we’ve already explained to her that it’s your fault the transplant didn’t work”.
2. Doc: “Are you ok?”. Me: after a lengthy pause, “I’m PISSED off at you; I’ll be fine in a minute”.
3. Doc: “Do you have any other questions?” JT: “Are transplants Buy One – Get One Half Off?”.
We all made what we hoped was the best treatment decision possible for the well being of JT. I don’t blame anyone for what happened…it was a chance we took together and unfortunately it was the wrong choice. So if you don’t mind, please continue to follow our journey, pray for my kids and pray for all the doctors, nurses and everyone involved in caring for my wonderful son.
Peace, Sabrina
Wednesday, May 26
Wednesday, May 19
Hang Tight
Thanks everyone for continuing to check the blog for JT’s status. I haven’t been on here because quite frankly it’s no fun to write when you don’t have any good news to share! Although if I step back and look at the big picture, I do have good news to share in the form of JT is alive and somewhat healthy and driving us all crazy the way every 13 year old boy does his parents – so there you go!
The last few weeks have been pretty status quo. We received the results of the second cell test and it rose to 8% Sydney cells/92% JT cells. Doctors don’t really hold out any hope that the transplant will be a success. However, because it did rise 1%, they wanted to wait another two weeks and run it again just in case it is going up. Two weeks ago they also ran blood test to check for the PNH disease and as they anticipated it has not gone away. Although the percentage of PNH is about 20% lower than it was before transplant. If Sydney’s cells were to start taking over, the PNH percentage would be expected to drop.
I mentioned in the previous entry about Sydney giving platelets – which is not exactly what she would be doing, but the easiest way I could explain it. It’s actually called a peripheral blood stem cell transplant. Dr. Horan advised us in a follow up appointment that he did not want to do it after all because there was such a huge risk of complicated graph versus host disease (GVHD) and he wanted to wait and do a second bone marrow transplant where he felt GVHD has a better potential to not be as severe for JT.
Yesterday, May 18, JT had blood drawn for another cell test. Right now I am holding out hope for a miracle that Sydney’s cells will show signs of growing and begin taking over in JT’s body. Hope, or denial perhaps, but it gives me something concrete to talk with GOD about.
So our new Plan B is a second bone marrow transplant. This time they would do a Myeloablative Transplant. The first one was a Non-Myeloablative Transplant. Myeloablative is a more intense, higher dose chemotherapy and radiation conditioning prior to the actual transplant. The result being a much rougher recovery for JT with a higher risk of GVHD, but a better outcome of success. Sydney will still be the matching donor, her bone marrow is not the reason for this transplant failing.
JT continues to take the immunosuppressant drugs so he must take precautions to protect himself. He has to wear a mask when going out, stay away from people who are sick as much as possible, stay away from public places like stores, movie theaters, and what not. He will not be able to go swimming this summer because of bacterial risks and he still has his central line in. I’m sure he is going stir crazy being in the house all the time! But he hardly ever complains. School finishes up this week so hopefully friends will be around more to visit and do sleepovers.
We should get the new blood results back around Memorial Day. If it is as expected, they will begin weaning JT off the medication, give his body a rest for a few weeks and look at going back into the hospital around the end of June for transplant.
Or “hopefully” Sydney’s cells were just slow out of the starting gate; we’ll see improved results and can just hang tight without Plan B…
xo Sabrina
The last few weeks have been pretty status quo. We received the results of the second cell test and it rose to 8% Sydney cells/92% JT cells. Doctors don’t really hold out any hope that the transplant will be a success. However, because it did rise 1%, they wanted to wait another two weeks and run it again just in case it is going up. Two weeks ago they also ran blood test to check for the PNH disease and as they anticipated it has not gone away. Although the percentage of PNH is about 20% lower than it was before transplant. If Sydney’s cells were to start taking over, the PNH percentage would be expected to drop.
I mentioned in the previous entry about Sydney giving platelets – which is not exactly what she would be doing, but the easiest way I could explain it. It’s actually called a peripheral blood stem cell transplant. Dr. Horan advised us in a follow up appointment that he did not want to do it after all because there was such a huge risk of complicated graph versus host disease (GVHD) and he wanted to wait and do a second bone marrow transplant where he felt GVHD has a better potential to not be as severe for JT.
Yesterday, May 18, JT had blood drawn for another cell test. Right now I am holding out hope for a miracle that Sydney’s cells will show signs of growing and begin taking over in JT’s body. Hope, or denial perhaps, but it gives me something concrete to talk with GOD about.
So our new Plan B is a second bone marrow transplant. This time they would do a Myeloablative Transplant. The first one was a Non-Myeloablative Transplant. Myeloablative is a more intense, higher dose chemotherapy and radiation conditioning prior to the actual transplant. The result being a much rougher recovery for JT with a higher risk of GVHD, but a better outcome of success. Sydney will still be the matching donor, her bone marrow is not the reason for this transplant failing.
JT continues to take the immunosuppressant drugs so he must take precautions to protect himself. He has to wear a mask when going out, stay away from people who are sick as much as possible, stay away from public places like stores, movie theaters, and what not. He will not be able to go swimming this summer because of bacterial risks and he still has his central line in. I’m sure he is going stir crazy being in the house all the time! But he hardly ever complains. School finishes up this week so hopefully friends will be around more to visit and do sleepovers.
We should get the new blood results back around Memorial Day. If it is as expected, they will begin weaning JT off the medication, give his body a rest for a few weeks and look at going back into the hospital around the end of June for transplant.
Or “hopefully” Sydney’s cells were just slow out of the starting gate; we’ll see improved results and can just hang tight without Plan B…
xo Sabrina
Friday, April 30
Keeping the Faith
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
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
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!
Subscribe to:
Posts (Atom)
