Hey all,
So as you know, Tom came in last Thursday the 10th (his mom's bday). He was supposed to have five days of chemo that has low side effects; however he was sick straight away and it was a long five days. Then he was supposed to have a rough chemo on day six... and was completely fine, began eating and all sorts. He has a blackberry-apple pie from Rick's Dessert Diner to commemorate his transplant day (I'm eagerly awaiting this).
Transplant was supposed to happen yesterday, the 16th (our anniversary), but the cells arrived after 10pm so they said it was too late and they'd do it in the morning. Apparently the cells landed at San Francisco Airport just before 6 so the courier must have stopped for a five course meal or something as I don't think it takes that long.
Anyway, he had the transplant this morning, cells infused in about 5 minutes. Apart from some initial minor shaking, his vitals all stayed steady, there was no allergic reaction this time... all is good so far. So now they monitor vitals every 30 min for 2 hours, then every hour for four hours, and if all is good he goes back to normal check ins. He's sleeping off the benadryl currently and catching up on the two nights of missed zzz's due to anxiety.
We had a lovely visit from Corinne and Madalynne on Monday which cheered Tom up, though he wished he was feeling better and able to be better company, but it was nice. Madalynne played nurse and took care of Tom's sick bags and even gave him a foot massage! Helen, David, and Elaine are here on morning bacon sandwich duty and keeping company while making sure the house, dog, and fish are all good.
The shawl from Aunt Linda and Uncle Fred is keeping everyone warm in the room Tom likes to keep freezing, thank you very much! Also, we've been blessed (I may have mentioned this previously but I don't remember) from Nickie with some essential oils and infra red heating pad that has been a God send for Tom's back and he's been enjoying some daily foot massages. I would like to put a disclaimer out there though that I will not be broadening my clientele of foot massages as me even massaging Tom's feet is just a clear display of true love (I hate feet, apart from their good use as a means of transportation).
Right, that's all for now. Today's counts aren't on the board yet, but yesterday's were as follows:
White blood cells (WBC): 3.2
Hemoglobin (Hgb): 11.6 (probably the highest it's been definitely in the last year)
Platelets (Plt): 114
These good numbers will be short lived as the week's chemo kicks in and the cyclosporine (immune suppressant) along with the small doses of methotrexate to start here daily (to also work on the immune system). So the numbers should drop and then when these stem cells start to mature and reproduce they'll go up again and be means for discharge.
I'll keep you all posted :)
Thursday, July 17, 2014
Thursday, July 3, 2014
Brilliant News
Sorry for the long wait, the doctor had decided to wait until the consent signing to give the news. It was kind of a good thing because we had the "no news is good news" approach given that he said he would call prior in order to cancel yesterday's consent signing if the biopsy wasn't good. Anyway, it wasn't just good, it was as good as it gets!
Tom is 100% donor (for the first time ever we're pretty sure) and is 100% in REMISSION!!!! Now, you may be thinking, "Great news! Now he doesn't have to do a second transplant!" Which even the doc said would be normal to conclude; However, given that Tom has relapsed twice already, we already know that his remission on chemo alone will likely not stick. The goal of the chemo was to get him into remission as people who are not in full remission don't tend to do well in transplant. So, he is as ready as he could be for transplant and we are so very grateful! All of his scans and tests on his vital organs came back good too. :)
So what would you like to know? Well when they check for donors they "match" on 10 genetic markers. The last donor was a 9/10 and the mismatch was a marker that only mattered if another marker was mismatched. Tom clearly took well to the donor's cells as apart from the initial allergic reaction during the transplant, he never got graft vs. host... even when they tried purposely with two DLI's (mini stem cell transfusions without the use of immune suppressants to cause GVHD). So when you get graft vs host, the attack is non-discriminatory on the system... the donor cells just begin attacking everything to a level depending on the level of gvhd. While on one hand you don't want that because it can shut some important things down, a mild case of it can be good because as it's non-discriminatory, it means it also will have what they refer to as graft vs leukemia effect as well. So Tom never got that out of the last transplant. The new cells moved in peacefully and didn't fight him or his leukemia cells.
This time he has another 9/10 match but the mismatch is a different marker and the type of marker it is means there's more of a chance for gvhd this time than last time, but remember gvhd also means some graft vs leukemia. Because gvhd can equal some graft vs leukemia, it also lends itself to a high percentage of people (like in the 90% range) who get gvhd don't relapse. So if you can make it with some mild gvhd you sort of seal the healthy deal for yourself. Anyway, so the donor is a 40 year old female and doc says she's a "do-gooder" because unlike the first two people he contacted and weren't available until September, she apparently jumped at the chance, for which we are much appreciative.
Other related news, Tom is partaking in a couple of studies as well so that they can learn more about possible preventative meds and blood studies to study his and the donors blood to see what makes for a good transplant. One of them has some compensation which he is planning to put toward his Magic Weekend Fund (for you UK folks he's saving/planning to go back next year for Rugby League Magic Weekend). The other one they just take some blood before hand (they did that yesterday) and you never hear of it again.
We've got a full house! Oliver moved in about Mid May, David arrived Saturday, Helen arrived Sunday, and Grandma Elaine arrives Friday the 11th. Which brings me to his hospital dates (the moment everyone has been waiting for). Tom goes in early morning Thursday the 10th (Helen's birthday) and then transplants on the 16th (our wedding anniversary). So that must be good luck! Doc says he anticipates at least a 3 1/2 week stay. That sounds about right, last time Tom was in about 23 days total.
We also got a lovely surprise in the mail from Team East Coast last week! My Great Aunt Linda, referring more as an adjective than a familial title ;) , and Great Uncle Fred sent out the most beautifully hand made shawl that must have taken forever to make it's so beautiful. Tom is always going from hot to cold in the hospital and asking for warm blankets to wrap over his shoulders. Photos to come when he's putting it to some good use.
As of tonight at 5pm I will be on a three week leave from work so I'll do my best to be more frequent in updates (I keep saying this... but in my defense Tom wanted me to wait until we had results to post).
Happy Fourth of July to our American peeps and Happy Reminder We Won to those in the UK (haha)!!!!
Tom is 100% donor (for the first time ever we're pretty sure) and is 100% in REMISSION!!!! Now, you may be thinking, "Great news! Now he doesn't have to do a second transplant!" Which even the doc said would be normal to conclude; However, given that Tom has relapsed twice already, we already know that his remission on chemo alone will likely not stick. The goal of the chemo was to get him into remission as people who are not in full remission don't tend to do well in transplant. So, he is as ready as he could be for transplant and we are so very grateful! All of his scans and tests on his vital organs came back good too. :)
So what would you like to know? Well when they check for donors they "match" on 10 genetic markers. The last donor was a 9/10 and the mismatch was a marker that only mattered if another marker was mismatched. Tom clearly took well to the donor's cells as apart from the initial allergic reaction during the transplant, he never got graft vs. host... even when they tried purposely with two DLI's (mini stem cell transfusions without the use of immune suppressants to cause GVHD). So when you get graft vs host, the attack is non-discriminatory on the system... the donor cells just begin attacking everything to a level depending on the level of gvhd. While on one hand you don't want that because it can shut some important things down, a mild case of it can be good because as it's non-discriminatory, it means it also will have what they refer to as graft vs leukemia effect as well. So Tom never got that out of the last transplant. The new cells moved in peacefully and didn't fight him or his leukemia cells.
This time he has another 9/10 match but the mismatch is a different marker and the type of marker it is means there's more of a chance for gvhd this time than last time, but remember gvhd also means some graft vs leukemia. Because gvhd can equal some graft vs leukemia, it also lends itself to a high percentage of people (like in the 90% range) who get gvhd don't relapse. So if you can make it with some mild gvhd you sort of seal the healthy deal for yourself. Anyway, so the donor is a 40 year old female and doc says she's a "do-gooder" because unlike the first two people he contacted and weren't available until September, she apparently jumped at the chance, for which we are much appreciative.
Other related news, Tom is partaking in a couple of studies as well so that they can learn more about possible preventative meds and blood studies to study his and the donors blood to see what makes for a good transplant. One of them has some compensation which he is planning to put toward his Magic Weekend Fund (for you UK folks he's saving/planning to go back next year for Rugby League Magic Weekend). The other one they just take some blood before hand (they did that yesterday) and you never hear of it again.
We've got a full house! Oliver moved in about Mid May, David arrived Saturday, Helen arrived Sunday, and Grandma Elaine arrives Friday the 11th. Which brings me to his hospital dates (the moment everyone has been waiting for). Tom goes in early morning Thursday the 10th (Helen's birthday) and then transplants on the 16th (our wedding anniversary). So that must be good luck! Doc says he anticipates at least a 3 1/2 week stay. That sounds about right, last time Tom was in about 23 days total.
We also got a lovely surprise in the mail from Team East Coast last week! My Great Aunt Linda, referring more as an adjective than a familial title ;) , and Great Uncle Fred sent out the most beautifully hand made shawl that must have taken forever to make it's so beautiful. Tom is always going from hot to cold in the hospital and asking for warm blankets to wrap over his shoulders. Photos to come when he's putting it to some good use.
As of tonight at 5pm I will be on a three week leave from work so I'll do my best to be more frequent in updates (I keep saying this... but in my defense Tom wanted me to wait until we had results to post).
Happy Fourth of July to our American peeps and Happy Reminder We Won to those in the UK (haha)!!!!
Friday, April 25, 2014
Playing Catch Up... Again
Well, I'm sure at this point everyone is well aware that we did not get the results we had our fingers and toes crossed, and prayers said for. So Tom had relapsed again and to spare everyone the lengthy details and a box of tissues... he underwent some more chemo and will hopefully be doing another stem cell transplant this summer.
He did the chemo two weeks ago and was released to go home on Palm Sunday just following the chemo because he convinced the doc he'd come back in as soon as he got the fevers. Staying true to his word, he ended up back in here last Friday night with the fevers, but luckily they got the fevers under control before it'd been too long or they got too bad, hooray!
David has been out to visit twice this month so that was nice and we were graced with Oliver's presence twice and Kane paid a visit with him. We also got to see Alex, Emily, and Lily just before Tom had to go in for chemo and Helen is here currently for another week! Kris came and spent a day with Tom too (thank you!) so he's been getting some visitors to keep him company and well entertained. Kane and Oliver introduced the game Catchphrase to the group and that was a winner!
Currently they are looking for a new donor for this next transplant. As of today Tom is 0.1 WBC which is great because the doc said the other day that he didn't expect movement on those counts until next week-ish. As we all know though, Tom is an overachiever. A few days ago he told me Dr. Carroll said that his counts would probably hit the chart next week and maybe he'd be home end of next week and I told him to shoot for 0.1 on Friday, right on time!
In other fun news, our friend Lauren's school is doing a fundraiser for the Leukemia and Lymphoma Society and after sharing Tom's story they decided to name their classroom team, Team Tom! How awesome is that?!
He did the chemo two weeks ago and was released to go home on Palm Sunday just following the chemo because he convinced the doc he'd come back in as soon as he got the fevers. Staying true to his word, he ended up back in here last Friday night with the fevers, but luckily they got the fevers under control before it'd been too long or they got too bad, hooray!
David has been out to visit twice this month so that was nice and we were graced with Oliver's presence twice and Kane paid a visit with him. We also got to see Alex, Emily, and Lily just before Tom had to go in for chemo and Helen is here currently for another week! Kris came and spent a day with Tom too (thank you!) so he's been getting some visitors to keep him company and well entertained. Kane and Oliver introduced the game Catchphrase to the group and that was a winner!
Currently they are looking for a new donor for this next transplant. As of today Tom is 0.1 WBC which is great because the doc said the other day that he didn't expect movement on those counts until next week-ish. As we all know though, Tom is an overachiever. A few days ago he told me Dr. Carroll said that his counts would probably hit the chart next week and maybe he'd be home end of next week and I told him to shoot for 0.1 on Friday, right on time!
In other fun news, our friend Lauren's school is doing a fundraiser for the Leukemia and Lymphoma Society and after sharing Tom's story they decided to name their classroom team, Team Tom! How awesome is that?!
Anyway, sorry for the delay and I'm hoping everyone has really been updated in some form or another already. The initial news was so much of a blow I just wasn't up to it and then he was doing chemo and he's back in again, so it took me awhile. Hoping he's back home soon! Thank you everyone for all of your love and thoughtful support!
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