We're HOME!!!
It was a tough week. This chemo really does a number on poor Tom. Doctor expects that he'll be fine through Christmas, just experience some nausea most likely (to which he has every med for). Expects that it will be sometime later next week when his counts will crash that we may see him end up in the hospital again with a neutropenic fever or some kind of infection. He prescribed another antiobiotic though to keep things away.
I'm sick, which is lovely. So we're both laying around in separate rooms feeling awful. This is definitely a somber Saturday. Apart from that though, Tom's happy to be home... as am I and I'll be especially happy enough when I'm well enough to sleep in my bed without worrying about infecting Tom.
Anyhow, we hope everyone else has had a wonderful pre-Christmas weekend!
Saturday, December 22, 2012
Friday, December 21, 2012
A Quick Update
So it's Friday which means Tom has his last three chemo meds tonight and should be discharged in the morning. The doctor took him off of compazine (a nausea preventing pill) because ironically enough Tom couldn't keep anything down. Instead he's on an IV push of haldol and benadryl giving one of the two every three hours. While this switch to these has seemed to help significantly with the nausea, the flipside is extreme fatigue. Tom is losing the battle to stay awake and it has been very frustrating for him as it then leaves him not tired enough to sleep at night. So there's that.
In other news, it appears that they have about 12 possible matches that they're examining to choose the best three (to leave room for some backup options if option no. 1 doesn't come through). Because it is the Holiday season, Dr. Carroll expects that getting in touch with people and getting things done promptly, is highly unlikely to happen. His prediction is that these delays will make for Tom having to do another four day maintenance round in 5-6 weeks and then the next time he will come in will be transplant time. So that's good, a plan. That's pretty much everything we have to report!
Have a wonderful weekend!
In other news, it appears that they have about 12 possible matches that they're examining to choose the best three (to leave room for some backup options if option no. 1 doesn't come through). Because it is the Holiday season, Dr. Carroll expects that getting in touch with people and getting things done promptly, is highly unlikely to happen. His prediction is that these delays will make for Tom having to do another four day maintenance round in 5-6 weeks and then the next time he will come in will be transplant time. So that's good, a plan. That's pretty much everything we have to report!
Have a wonderful weekend!
Wednesday, December 19, 2012
Maintenance Chemo
Interesting week so far. Tom was scheduled to begin chemo on Monday. While he has achieved remission, it's necessary to do some chemo until they have a donor lined to ensure that he remains in remission. So, Monday was the day. We arrived for about noon at the doctor's office and we were there for about two hours while they did his labs and he checked in with Dr. Carroll, then we were brought to his room in oncology (on the plain Jane ward this time, not the bmt unit). He had his vitals done and then at about four the nurse came in and said she had no idea he was here! No big deal, busy day, but Helen and I left for home around six-ish and a ways down the freeway we get a call from Thomas, "turn around" he says.
Apparently the hospital was out of one of his chemo drugs. Out of chemo! So we went back to get him and we were told it'd be in for Tuesday or Wednesday, they had to locate some from another facility. Yesterday was then the big day. We were told to be in for three and when we arrived the pharmacy had called and said if we weren't in for four, they weren't going to mix the chemo. Well we were for three and they didn't start chemo until nine! Something to do with transport.
Anyway, all underway. His first night was a rough one... Very sick. Resting now, thanks to a rather large quantity of drugs I think. Expected to be released Saturday and so long as he can keep from any fevers, he should be home for Christmas.
In other news, David was supposed to arrive Friday and was actually able to be here this morning!
Counting down for Christmas! Will try to keep everyone posted on any developments here in the hospital!
Apparently the hospital was out of one of his chemo drugs. Out of chemo! So we went back to get him and we were told it'd be in for Tuesday or Wednesday, they had to locate some from another facility. Yesterday was then the big day. We were told to be in for three and when we arrived the pharmacy had called and said if we weren't in for four, they weren't going to mix the chemo. Well we were for three and they didn't start chemo until nine! Something to do with transport.
Anyway, all underway. His first night was a rough one... Very sick. Resting now, thanks to a rather large quantity of drugs I think. Expected to be released Saturday and so long as he can keep from any fevers, he should be home for Christmas.
In other news, David was supposed to arrive Friday and was actually able to be here this morning!
Counting down for Christmas! Will try to keep everyone posted on any developments here in the hospital!
Wednesday, December 12, 2012
More (disappointing) Results
Alex's results came back as a negative. There was only a 40% chance that one of the two would be a match, so the doctor had already ordered that they start looking on the registry just in case. We are assured that Tom should have no problems given his ethnic background, so that is at least some form of relief. At least out of the two results to come back this week, the one we really needed came back with great news (Tom being in remission). There's no other big news to really report, Tom goes back in for some maintenance chemo on Monday.
Today Tom's mom, Helen, arrives from England. So we will be headed to San Francisco to pick her up this afternoon. David arrives the day the world is supposed to end (the 21st) and hopefully Tom will be getting released that day as well :)
Tom would like to add that he's a bit disappointed about neither brother being a match, but that all things considered we're headed in the right direction.
Today Tom's mom, Helen, arrives from England. So we will be headed to San Francisco to pick her up this afternoon. David arrives the day the world is supposed to end (the 21st) and hopefully Tom will be getting released that day as well :)
Tom would like to add that he's a bit disappointed about neither brother being a match, but that all things considered we're headed in the right direction.
Monday, December 10, 2012
The Best Kind of News
Ladies and Gents,
Your good efforts whether they be prayers, happy thoughts, hopes, crossing of fingers and toes, whatever they were... you've done well. Tom's biopsy last Monday yielded no leukemia ... yes, you've read that correctly, no leukemia!!!!! Go on and read it again if you like, it's still true! We are absolutely elated to have received such news!
After the previous biopsy's crushing let down, we went in with absolutely no expectations. Nearly cried with the overwhelming joy (but don't worry, we were too cool for that). The oncologist told us that the pathologist looked rather discerningly and found absolutely no suspicious cells! That said, here's what comes next:
While Tom is in remission, the battle is far from over. If things were functioning normally and responding normally, Tom should have been in remission in August. That's why he has to get a bone marrow transplant. Because with chemo alone, even if remission were achieved (like it has been) the chances are very high for relapse. So, they achieve remission and then go forward with a marrow transplant.
Oliver was already determined as not a marrow match. Alex did his test last Monday, so the results ought to be in any day this week. Whether Alex comes back a match or not, it can still take near a month to coordinate things and get the sample collected, etc. Due to such a time frame and the rather high possibility that Alex is not a match and they will need to find a registry donor, they cannot waste any time and need to make sure that they maintain Tom's current remission. This means that he needs to do the same chemo as he did last month, but one less day worth and without the long stay.
Tom mentioned his mom's arrival on Wednesday and asked if he could wait until Thursday to go in. Dr. Carroll said, "Let's do Monday" so that Tom could spend the weekend with his Mom. So, he goes in Monday for five days (assuming he does not get a fever while in the hospital) which in turn means: Tom will be home for Christmas!!!! Sure, he will probably be feeling rather awful (as his counts will then be crashing at home rather than in the hospital) but he'll be here to celebrate the Holiday!!!!
As for the actual transplant. If Alex is a match, Tom will have to re-cooperate from this chemo he'll be doing next week and they will have to collect the stem cells from Alex, so we're looking at mid-late January. The same to be said if Alex isn't a match, but they are able to line up a registry donor quickly. If neither of those are true, they will do more maintenance chemo to retain remission until they do have something lined up.
When things are lined up and ready to move forward with the transplant, they do a different chemo. This other chemo is so strong that it completely wipes out Tom's marrow and immune system, but unlike the current and previous regimen, the marrow doesn't come back. So, they absolutely cannot do this chemo until they have the donor's goods lined up and ready to infuse, as there's no returning Tom's system. The actual "transplant" is like hanging a bag of blood (but stem cells) and takes about 45 minutes.
They then have Tom stay in for about 5-7 weeks as he recovers and they monitor for anything crazy. Upon discharge, he will have to go into the hospital every morning for a few months, to check his levels and adjust his anti-rejection meds (to prevent graph vs. host). If things are good and he attains 100% the donor's marrow, they will begin to slowly let him off the leash.
So, we aren't across the finish line yet, but we have made one gigantic stride in the right direction.
Happy Monday Everyone!
Your good efforts whether they be prayers, happy thoughts, hopes, crossing of fingers and toes, whatever they were... you've done well. Tom's biopsy last Monday yielded no leukemia ... yes, you've read that correctly, no leukemia!!!!! Go on and read it again if you like, it's still true! We are absolutely elated to have received such news!
After the previous biopsy's crushing let down, we went in with absolutely no expectations. Nearly cried with the overwhelming joy (but don't worry, we were too cool for that). The oncologist told us that the pathologist looked rather discerningly and found absolutely no suspicious cells! That said, here's what comes next:
While Tom is in remission, the battle is far from over. If things were functioning normally and responding normally, Tom should have been in remission in August. That's why he has to get a bone marrow transplant. Because with chemo alone, even if remission were achieved (like it has been) the chances are very high for relapse. So, they achieve remission and then go forward with a marrow transplant.
Oliver was already determined as not a marrow match. Alex did his test last Monday, so the results ought to be in any day this week. Whether Alex comes back a match or not, it can still take near a month to coordinate things and get the sample collected, etc. Due to such a time frame and the rather high possibility that Alex is not a match and they will need to find a registry donor, they cannot waste any time and need to make sure that they maintain Tom's current remission. This means that he needs to do the same chemo as he did last month, but one less day worth and without the long stay.
Tom mentioned his mom's arrival on Wednesday and asked if he could wait until Thursday to go in. Dr. Carroll said, "Let's do Monday" so that Tom could spend the weekend with his Mom. So, he goes in Monday for five days (assuming he does not get a fever while in the hospital) which in turn means: Tom will be home for Christmas!!!! Sure, he will probably be feeling rather awful (as his counts will then be crashing at home rather than in the hospital) but he'll be here to celebrate the Holiday!!!!
As for the actual transplant. If Alex is a match, Tom will have to re-cooperate from this chemo he'll be doing next week and they will have to collect the stem cells from Alex, so we're looking at mid-late January. The same to be said if Alex isn't a match, but they are able to line up a registry donor quickly. If neither of those are true, they will do more maintenance chemo to retain remission until they do have something lined up.
When things are lined up and ready to move forward with the transplant, they do a different chemo. This other chemo is so strong that it completely wipes out Tom's marrow and immune system, but unlike the current and previous regimen, the marrow doesn't come back. So, they absolutely cannot do this chemo until they have the donor's goods lined up and ready to infuse, as there's no returning Tom's system. The actual "transplant" is like hanging a bag of blood (but stem cells) and takes about 45 minutes.
They then have Tom stay in for about 5-7 weeks as he recovers and they monitor for anything crazy. Upon discharge, he will have to go into the hospital every morning for a few months, to check his levels and adjust his anti-rejection meds (to prevent graph vs. host). If things are good and he attains 100% the donor's marrow, they will begin to slowly let him off the leash.
So, we aren't across the finish line yet, but we have made one gigantic stride in the right direction.
Happy Monday Everyone!
Friday, December 7, 2012
Busying the Mind
Suggested by the social worker, we've taken a trip to Santa Cruz to visit family and friends to get our minds off of the biopsy and marrow matching results. Tom still feels a bit wiped out from the chemo he had, but his intake of medicine to help is lowering, so I suppose that's a good sign.
The doctor's office says we can expect to be back in for chemo on Tuesday or Wednesday, we have an appointment Monday for the pending results and will find out then. What kind of chemo depends on the results. If Tom is in remission and Alex is a match, it will probably be the ultimate chemo (that's used to wipe out his entire marrow and immunity...there's no going backward they have to be transplant ready). If he is in remission and doesn't have a match yet, it will be a lower key chemo strictly to just keep him in remission until a match is secured. If he is not in remission, they will do another round to get him there. So, a lot of possibilities in the air.
In the meantime, we are going to do our best to keep busy and otherwise minded.
Have a wonderful weekend!
The doctor's office says we can expect to be back in for chemo on Tuesday or Wednesday, we have an appointment Monday for the pending results and will find out then. What kind of chemo depends on the results. If Tom is in remission and Alex is a match, it will probably be the ultimate chemo (that's used to wipe out his entire marrow and immunity...there's no going backward they have to be transplant ready). If he is in remission and doesn't have a match yet, it will be a lower key chemo strictly to just keep him in remission until a match is secured. If he is not in remission, they will do another round to get him there. So, a lot of possibilities in the air.
In the meantime, we are going to do our best to keep busy and otherwise minded.
Have a wonderful weekend!
Tuesday, December 4, 2012
Fingers and Toes Crossed, Everyone
So, Alex got his bloodwork for the marrow typing test done today, hopefully we should get the results next week or so! Good vibes, thoughts, prayers, fingers and toes crossed, the works- send them this way in hopes that Alex is a match!
Tom is also getting a bone marrow biopsy today, to check where he's at remission wise. All of those things listed above, channel them again for Tom to be in remission which means he will be transplant ready! He's rather nervous, understandably, so they're drugging him up. After the procedure it's back to the waiting game for a few days to a week, for the results.
Short and sweet, keep those fingers crossed!!!! Hoping for good news in the near future!
Tom is also getting a bone marrow biopsy today, to check where he's at remission wise. All of those things listed above, channel them again for Tom to be in remission which means he will be transplant ready! He's rather nervous, understandably, so they're drugging him up. After the procedure it's back to the waiting game for a few days to a week, for the results.
Short and sweet, keep those fingers crossed!!!! Hoping for good news in the near future!
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