We’ve had a fairly decent week all things considered. JT had a day off on Monday before Transplant day on Tuesday. I’ve decided we’re going to celebrate a second birthday, August 24, from now on for Sydney and JT to honor what these kids have had to endure. Transplant is pretty anti-climatic for JT and involves an IV drip of Sydney’s bone marrow. For Sydney, it’s much more painful and invasive. For those of you who have witnessed their child coming out of anesthesia, you can attest that it is quite interesting what comes “out of the mouth of babes” during this time! She was able to visit JT briefly after the hour long procedure, then headed home with Jim where she continues to nurse pain & nausea with sleep and medication.
JT began his second chemo drug, Methotrexate, on Day 1 (Wednesday). He’ll receive two more doses – one on Day 3 and one on Day 6 to keep his immune system depressed. His counts are slowly dropping as the pre-transplant treatment kicks in. They expect him to get pretty sick within the next week since they increased the dose of the Cytoxin chemo this go around. He has not been able to eat and as a result has lost 7 pounds this past week. They came in yesterday to put the NG tube in (not sure if that is the correct word, but I referred to it as the nose to gut tube during the first transplant). We managed to postpone the inevitable with the promise of eating. So yesterday he managed two servings of good ol’ Hamburger Helper and half a Snickers bar. Not enough calories unfortunately so today we’ll put the tube in.
The nausea has tapered off for now, but they told him it will return. His taste buds are shot which is part of the reason he’s not eating. He is also developing mucousitis (I have no clue how to spell that one) – basically mouth sores and deadening of the tissue in his throat. They will put him on a morphine pump in the next day or two to combat the pain that comes along with it. The diarrhea continues to be bothersome for him as well. All a part of the process!
On a more positive note, because he is not taking any nausea/sleepy medicine, he has been feeling good enough to resume his laps and the hospital teacher was in for a few hours yesterday to keep him on track with his school work! We’ve also been having fun playing games and watching endless episodes of goofy kid shows. For the next week or so, we’ll continue to keep close watch on his blood counts with the prayer that after they hit bottom, Sydney’s bone marrow will come in do what it needs to as quickly and painlessly as possible. Jim and I will continue to swap out every few days so we can spend time with both kids. As always, thanks everyone for following the blog, checking in with us and most importantly for your continued prayers for our family!
xo Sabrina
Thursday, August 26
Sunday, August 22
Clarification...
Actually, its the end of chemotherapy before the transplant. He still will recieve one more chemotherapy drug after the transplant to keep his immune system suppressed while Sydney's bone marrow attempts to take over. Sorry for any confusion!
Zombie Blood
Today marked the end of chemotherapy. Thank God we made it through the preparative treatment! Tomorrow JT will get a day of rest before Transplant Day on Tuesday. Jim and I swapped out yesterday afternoon so he is receiving the brunt of the zombie blood side effects – did you see the picture of JT’s pole? Our attempt to inject some humor into the otherwise dull lives that BMT nurses lead. Looking forward to next week! Enjoy your weekend my friends, God bless all of you!
xo Sabrina
Friday, August 20
Glowing In The Dark
I’m not going to lie, radiation was rough. JT just finished up 3 days of twice-a-day total body radiation and has not escaped any of the side effects that go along with it. We would wake at 5:30 and travel the tunnels under Children’s to the Winship Cancer Center across the street for morning treatment and then again at various times in the afternoon for a second treatment.
He experienced nausea, burning & itching skin, metallic taste in his mouth, thickend mucous, and jaw pain. I'm happy to report that glowing in the dark was a hoax. He has eaten very little over the past few days and has dropped a couple of pounds already, but the Doctors assured him he will not have to worry about the feeding tubes until after next Tuesday’s transplant. The nurses we’ve had so far have been great and are right there jumping on any discomfort with the wonders of modern medicine.
Despite everything, he still manages to crack a joke or make a witty comment to bring a smile to our faces. Right now he is resting quietly while Jim and I are anxiously waiting phase 2 – chemo – to begin bright and early at 6am tomorrow. Thank you all for your notes of encouragement on Facebook, email, cards, phone calls, the blog, etc.! Keep them coming, he will be getting a higher dose of chemo than the first transplant so we haven’t sailed through this yet!
xo Sabrina
He experienced nausea, burning & itching skin, metallic taste in his mouth, thickend mucous, and jaw pain. I'm happy to report that glowing in the dark was a hoax. He has eaten very little over the past few days and has dropped a couple of pounds already, but the Doctors assured him he will not have to worry about the feeding tubes until after next Tuesday’s transplant. The nurses we’ve had so far have been great and are right there jumping on any discomfort with the wonders of modern medicine.
Despite everything, he still manages to crack a joke or make a witty comment to bring a smile to our faces. Right now he is resting quietly while Jim and I are anxiously waiting phase 2 – chemo – to begin bright and early at 6am tomorrow. Thank you all for your notes of encouragement on Facebook, email, cards, phone calls, the blog, etc.! Keep them coming, he will be getting a higher dose of chemo than the first transplant so we haven’t sailed through this yet!
xo Sabrina
Friday, August 13
Counting down...
The countdown begins! Just a couple of days left until we start this thing again! The radiation simulation last Tuesday was interesting. JT was measured, cat scanned, x-rayed and prepared for the whole body radiation they will add to his preparative treatment for the second transplant. He will be receiving radiation twice a day for the first three days that he is admitted.
Meanwhile, Sydney signed her “many” consent forms for her procedure and was able to return to school. They decided to add the medication Neupogen to her prep in addition to the iron supplements she has been taking all summer. It’s in the form of a shot that Jim or I will give to her for 3 days before her surgery. I remember taking these shots when I was going through cancer treatment and they are painful…both receiving them and while they are working to boost your white blood cells. I’m sorry she has to do it.
On a positive note, JT gave Dr. Chang his puppy dog look and got him to agree to discontinue his Lovenox shots! It’s a blood thinner that he has taken for the last two years to help ward off clotting side effects of his PNH. These were painful for him as well and caused a lot of bruising so he was very happy.
On Sunday, we have scheduled with our church to have both kids receive the Anointing of the Sick blessing. So if you happen to be thinking of us that evening, we’d love it if you could throw up an extra pray for both of them to have safe and successful procedures.
Thanks for checking on us!
XO Sabrina
Meanwhile, Sydney signed her “many” consent forms for her procedure and was able to return to school. They decided to add the medication Neupogen to her prep in addition to the iron supplements she has been taking all summer. It’s in the form of a shot that Jim or I will give to her for 3 days before her surgery. I remember taking these shots when I was going through cancer treatment and they are painful…both receiving them and while they are working to boost your white blood cells. I’m sorry she has to do it.
On a positive note, JT gave Dr. Chang his puppy dog look and got him to agree to discontinue his Lovenox shots! It’s a blood thinner that he has taken for the last two years to help ward off clotting side effects of his PNH. These were painful for him as well and caused a lot of bruising so he was very happy.
On Sunday, we have scheduled with our church to have both kids receive the Anointing of the Sick blessing. So if you happen to be thinking of us that evening, we’d love it if you could throw up an extra pray for both of them to have safe and successful procedures.
Thanks for checking on us!
XO Sabrina
Monday, August 9
Back to School!
Can you believe school started here on August 5th! Both JT and Sydney started with the rest of Cobb County on a hot Thursday morning last week. Hopefully Sydney will only have a minimal disruption to the start of her sophomore year with the delay in transplant dates. We made the decision to start JT’s 8th grade year at school so he can meet his teachers, pick up his books, get his locker assignment and most importantly re-establish connections with friends that he hasn’t seen since last March.
Tuesday morning, August 10th, both kids go to Egleston to sign the consent forms for the second transplant. Sydney will return to school and JT will remain the rest of the day to begin the radiology simulation. The second transplant will include “whole body” radiation to help the chemo wipe out his immune system entirely. More on that later.
JT will go to school the rest of the week. On Tuesday, August 17th he will be admitted to the transplant unit for the second time this year. On one hand, it’s not quite as scary since we’ve “been there, done that”. On the other hand, we’re scared to death because we know what’s coming. I hope he gets a good room…large and with a view, and not next to the Family Room. Hint Hint!
DAY 0 will be the following Tuesday, August 24th. Sydney will be admitted outpatient, undergo her procedure to extract the bone marrow and return to school when she has healed and feeling up to it. She’s been on iron supplements for the past few months and there is a chance that tomorrow they will prescribe additional medicine to boost her blood counts before the 24th.
Thank you everyone for continuing to check in with us this summer. And thank you for staying with us and praying with us during this next round of our bone marrow adventures.
Please GOD, let JT skate through this one as easily as he did the last with no Graft Versus Host Disease, excellent care from the BMT Physicians (who also allowed us to sleep in before starting their rounds at a decent hour I might add), great medicines for pain and nausea, pretty Nurses and PT’s to keep his spirits up and keep him motivated, excellent teachers to keep him on track and ready to return to Simpson, and Dr. Felner, our favorite Endocrinologist, who recommended the insulin drip from the start (maybe have him be on call more frequently this go around).
Only this time with a successful transplant on the tail end to share with all our wonderful family, friends and “Pray for JT” followers!
See you next week from the trenches - XO Sabrina
Tuesday morning, August 10th, both kids go to Egleston to sign the consent forms for the second transplant. Sydney will return to school and JT will remain the rest of the day to begin the radiology simulation. The second transplant will include “whole body” radiation to help the chemo wipe out his immune system entirely. More on that later.
JT will go to school the rest of the week. On Tuesday, August 17th he will be admitted to the transplant unit for the second time this year. On one hand, it’s not quite as scary since we’ve “been there, done that”. On the other hand, we’re scared to death because we know what’s coming. I hope he gets a good room…large and with a view, and not next to the Family Room. Hint Hint!
DAY 0 will be the following Tuesday, August 24th. Sydney will be admitted outpatient, undergo her procedure to extract the bone marrow and return to school when she has healed and feeling up to it. She’s been on iron supplements for the past few months and there is a chance that tomorrow they will prescribe additional medicine to boost her blood counts before the 24th.
Thank you everyone for continuing to check in with us this summer. And thank you for staying with us and praying with us during this next round of our bone marrow adventures.
Please GOD, let JT skate through this one as easily as he did the last with no Graft Versus Host Disease, excellent care from the BMT Physicians (who also allowed us to sleep in before starting their rounds at a decent hour I might add), great medicines for pain and nausea, pretty Nurses and PT’s to keep his spirits up and keep him motivated, excellent teachers to keep him on track and ready to return to Simpson, and Dr. Felner, our favorite Endocrinologist, who recommended the insulin drip from the start (maybe have him be on call more frequently this go around).
Only this time with a successful transplant on the tail end to share with all our wonderful family, friends and “Pray for JT” followers!
See you next week from the trenches - XO Sabrina
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