Hey guys,
It's been pretty uneventful (which is good). Tom's just caught every bug I could possibly bring home from the daycares that I visit, but other than that there hasn't been much to report. They never did the 60 day biopsy because things seemed good. They weren't seeing any Graft vs. Host Disease (GVHD) so they were going to do another donor lymphocyte infusion (DLI) and at the last second Tom started showing some signs of GVHD with his liver function so they held off and that's where the fun has started.
His liver function tests have been all over the place, then he started with the typical hand and foot rash/itching, and mouth sores again. They put him on prednisone and had him start a dexamethasone rinse for his mouth (both steroids) to try and get the GVHD in check. With some recent check-ups the liver function did not seem to be bettering so they have scheduled a liver biopsy- which he is actually getting prepped for right now as I write this. They also started him back on an immune suppressant to try and get the donor cells to calm down.
Today we went in to the doctor prior to this liver biopsy and the Tom mentioned the stomach problems he's been having and the doctor wasn't thrilled about that. Well, that and the minor detail of Tom having lost like thirty pounds in a couple of weeks (Ladies- it's not a diet I'd recommend). Doctor Carroll was not so stoked about this news of 8 pounds lost in four days and the stomach issues so he said it sounds like the GVHD has spread to the gut which is very concerning. Due to the concern of the spread and also that his meds aren't being absorbed to combat the GVHD he is actually getting admitted to the hospital tomorrow so that he can get IV meds to get this all under control.
The Plan:
Dr. Carroll said that it shouldn't be a "long" stay, but that it could be a week or more to get his GVHD under control, have an idea of what's going on with the liver, get his liver function back on track, etc. In the meantime... I sill have to go work (boo) so since he won't be on chemo and super miserable (just very bored) I thought it might be worthwhile if anyone is available during the week to hang out with him? Tuesday night I actually have class so if someone is available in the evening that would be good too. Tom also loves food from "the outside" haha he can't do spicy or acidic but would love to have some food dates (who doesn't).
The Good News:
We have been hoping for GVHD. The liver biopsy is just to confirm and to also check for any infection or side-effects from all the meds. The doc said it's highly unlikely and he doesn't expect to see leukemia cells (because we're certain this is all GVHD) but that they check for that too. So just getting a hold on all of this will mean that the GVHD tends to keep people in remission so this may be the answer to our hopes and prayers. Let's hope he can get balanced and under control to make this a short stay.
Did I mention today is our anniversary? This boy just has a determination to not enjoy our anniversary! (Maybe I should take the hint-haha). Tomorrow is also his one-year anniversary from his second stem cell transplant!
Prayers for a smooth and speedy recovery appreciated. :)
Thursday, July 16, 2015
Friday, March 6, 2015
Results and DLI
Hey everyone, sorry for the delay in updating the blog. So we've been home since February 8th. Tom had his 30 day biopsy and he is Leukemia Free but due to the certainty that with chemo alone he won't stay there, they've done another donor lymphocyte infusion (DLI) Thursday. They're hoping they'll be able to get some more GVHD out of giving him these donor cells, though we aren't likely to know for a few weeks. Tom will have another biopsy at the end of March or so to check status of remission and % of donor cells and depending on whether he has GVHD they will decide whether to do a second DLI or not.
We got a wonderful banner from an elementary school in Pembroke Maine wishing a Happy Valentine's day. <3 Which just again I'd like to say thank you to everyone for sending over ONE HUNDRED birthday cards for Tom! He'd like to thank everyone for taking the time and thought to do that for him.
Tom is starting to build up his strength enough to venture out for brief periods of time which is nice. The doctor thinks he may be alright to be on his own in a week or so. We've had some visitors: Teri and Scott, Kathy, Jenny and Chris, which helps break up the long boring days.
Bit from Tom:
Thank you to everyone both stateside and from the UK for sending your well wishes my way.
We got a wonderful banner from an elementary school in Pembroke Maine wishing a Happy Valentine's day. <3 Which just again I'd like to say thank you to everyone for sending over ONE HUNDRED birthday cards for Tom! He'd like to thank everyone for taking the time and thought to do that for him.
Tom is starting to build up his strength enough to venture out for brief periods of time which is nice. The doctor thinks he may be alright to be on his own in a week or so. We've had some visitors: Teri and Scott, Kathy, Jenny and Chris, which helps break up the long boring days.
Bit from Tom:
Thank you to everyone both stateside and from the UK for sending your well wishes my way.
Sunday, January 25, 2015
1/25/15 Day 16 : Operation Birthday Cards was a SUCCESS
First and foremost, I just want to say a giant THANK YOU!!! to everyone who sent a card to Tom for his birthday. I'm sure there are still some trickling in but he definitely got over 100 cards! So crazy! So thank you, thank you, thank you for taking the time to stop and get a card, write him such wonderful messages, and send it off. Thank you to all those who shared the event as well. I think there was a strong contention between Sean Coon and Auntie Cheryl for "I'm a friend of ____" comments. Surprisingly, there has not been one repeat card, so I guess you're a very original group! I think Joe Doll takes the cake on that one in terms of finding a store bought card that absolutely no one else would have chosen (considering it was a card for not only just a woman, but of different ethnic origin LOL). I also think we clearly have a very funny group of friends based on the cards that made their way in. Clearly we also have some rather crafty/artsy friends too as there were a couple of really awesome hand made cards. Point being.... You are all SO amazing, thank you for making Tom's day as good as it could have been! <3 Jennifer, you should know those blankets you made have come quite in handy! Tom has had a couple of people ask if he's a USC fan and he gets to tell them that no it's the Huddersfield Giants team colors, haha. Also, Helen has greatly appreciated her blanket as well to keep her from freezing in here!
Well there appeared 0.1 white blood cells yesterday (which equals 100) so he's officially on the board and it was still there today. His hemoglobin (red cells) were hanging in there and actually did a couple of days of increasing on their own, but today they've fallen quite a bit and he will be getting a blood transfusion along with some platelets.
Poor Tom is at the point where the lining from the mouth all the way through the digestive track is gone so he's pretty sick, especially with GVHD of the mouth/possible gut as well. Needless to say he has to take pain meds in order to just not have terrible pain in his mouth, but definitely has to take them if he wants to try and eat something.
We don't have a projected date to come home, it may be wishful thinking for end of this next week, but maybe the week after.
Andrew left before the sun was up this morning back to Michigan. We enjoyed his company, good cooking, and I hear there's a home improvement project of a flood light that he did. Thanks for coming out and visiting Andrew! Izzy will miss her frequent trips outside (haha).
Speaking of Izzy, thank you to Louie and Kelly for getting her a new "indestructible" (we all know the truth lol) toy for her! The timing couldn't have been more perfect since she had just destroyed her other one! If she could, she'd give you guys two paws up ;)
Simon is coming to visit from the UK next weekend so that should be something for Tom to look forward to!
A note from Tom:
Tom also would like to add thank you for all of the birthday messages, cards, and wishes. He says he's really disappointed that he isn't going back to work and that it was a big blow for him. It will keep things complicated for a bit longer. He says that even though it's nearly February, he hopes that everyone had a good Christmas and New Year. He also wants everyone to know to please feel free to send him messages and stuff on Facebook, but to know that if he doesn't respond right away it's probably just because he's sick and forgetful but that he does enjoy reading them and plans to respond... eventually.
Well there appeared 0.1 white blood cells yesterday (which equals 100) so he's officially on the board and it was still there today. His hemoglobin (red cells) were hanging in there and actually did a couple of days of increasing on their own, but today they've fallen quite a bit and he will be getting a blood transfusion along with some platelets.
Poor Tom is at the point where the lining from the mouth all the way through the digestive track is gone so he's pretty sick, especially with GVHD of the mouth/possible gut as well. Needless to say he has to take pain meds in order to just not have terrible pain in his mouth, but definitely has to take them if he wants to try and eat something.
We don't have a projected date to come home, it may be wishful thinking for end of this next week, but maybe the week after.
Andrew left before the sun was up this morning back to Michigan. We enjoyed his company, good cooking, and I hear there's a home improvement project of a flood light that he did. Thanks for coming out and visiting Andrew! Izzy will miss her frequent trips outside (haha).
Speaking of Izzy, thank you to Louie and Kelly for getting her a new "indestructible" (we all know the truth lol) toy for her! The timing couldn't have been more perfect since she had just destroyed her other one! If she could, she'd give you guys two paws up ;)
Simon is coming to visit from the UK next weekend so that should be something for Tom to look forward to!
A note from Tom:
Tom also would like to add thank you for all of the birthday messages, cards, and wishes. He says he's really disappointed that he isn't going back to work and that it was a big blow for him. It will keep things complicated for a bit longer. He says that even though it's nearly February, he hopes that everyone had a good Christmas and New Year. He also wants everyone to know to please feel free to send him messages and stuff on Facebook, but to know that if he doesn't respond right away it's probably just because he's sick and forgetful but that he does enjoy reading them and plans to respond... eventually.
Subscribe to:
Posts (Atom)