Andrew has been recovering well from the second round of ICE. He hasn't had any infections, and knock wood, it's looking like we might make it through without any hospitalizations! He did have a pretty good blood count dive though, and Dr. W said platelet transfusion was necessary, but that we could do it as outpatient -- hooray! So Andrew had a transfusion on Tuesday night, and another one today, and he'll also get one every day for the next 4 days. But before you freak out at how intense that seems, being able to do it as an outpatient is a huge achievement -- it means he's actually fairly well, just low in his counts. The counts should start climbing back up tomorrow or the next day.
Tomorrow, Andrew heads into the city for the next PET scan. This is the scan to determine how well the cancer is responding to the ICE regimen. Dr. W (our local oncologist) said it doesn't have to show that all of the cancer is gone, just that it's moving in the right direction. If it's not having a positive impact, we move to the next chemo mix called GEMOX. Obviously, we're hoping the ICE is working, but we try not to get too attached to any particular outcomes anymore. We just listen to our doctors, try to keep our life as normal as possible, and cross each bridge as it arrives. We're due to see Dr. Z on the 4th for the results. If the ICE is working, Andrew will have at least one more round (possibly two) before the transplant. The goal is remission. My wonderful friends, Melissa and Heidi (and their lovely husbands) pitched in this week to help with the kids during all of the transfusions -- a huge shout of love to them for all of the support. And a big thanks to Bia and Kristi for all of the treats! Everyone continues to be so lovely and generous in their support of my little family, and we only hope we can return the favor someday -- under better circumstances, of course!
xo
L
Thursday, August 30, 2012
Sunday, August 19, 2012
Round 2 -- ICE
Andrew has just been admitted for the 2nd and most important round of ICE. We were crossing our fingers that his platelets would be ready to go. Albany would never give chemo unless they were at the 100 mark -- Dr. Z. said 70 was his go ahead. Today platelets came in at 67 -- good enough, apparently -- moving forward!!
Thursday, August 16, 2012
no movement
This is a very late update -- no chemo this week. Andrew's platelets actually haven't moved at all! This is some kind of crazy intense chemo -- we hope that means it's working! On the positive side, Andrew's feeling really good right now. So we wait.
We just finished a really busy and fun 2 weeks with my family -- assorted aunties, uncles, cousins and grandpa all flew in from all over the country to visit us and lend support -- it was so much fun, but by the end we realized how tired we were. Not just from the the visit, but from the last 6 or 7 weeks. We've been going non-stop since the boys got out of school in June -- we really wanted to squeeze all the fun out of this summer that we could, as it was such a hard year for all of us. And I think we did! Although we had some very hard days and a few hospital visits thrown in the mix, Andrew got to spend a lot of time and have a lot of fun with his boys this summer. Now things are winding down -- the four of us just stayed at the house for the last 3 days relaxing, sleeping, and generally behaving like vegetables. It's been really wonderful (and necessary).
I feel recharged and ready to head into all that awaits in the fall -- namely, a bone marrow transplant! It's sort of hard to believe that we've been waging this fight for nearly a year. I'm sad to think that we have to explain the situation to a whole new set of teachers at the boys' schools -- we were really hoping this would be behind us by now -- but ... he's alive (!), he's doing really well, and we've absolutely learned how to appreciate every new day together. Everything appears to be moving in the right direction -- things can get very bad and very scary from time to time, but Andrew always rallies, always bounces back! It's amazing to me how strong he is, no matter what is thrown at him. Andrew heads to the city today to meet with the transplant doctor, who will check his levels and explain everything that is going to happen over the next few months. We were told that once the cancer is put into remission, there is a very small window of time in which to perform the transplant. The best news is that we think we have a donor -- Andrew's youngest sister Julie! Though some test results are still pending, Dr. Z says it looks very favorable. Andrew sent a funny email to all of his siblings letting them know that Julie had "won" the sweepstakes.
Later, I'll add some pictures from our summer fun, and also write a post about Sloan Kettering. It's been wonderful and frustrating at the same time, and deserves it's own entry!
Another round of thanks for all of the love and help we've received this summer. The boys both had birthdays this summer, and they were showered with so many gifts and so much love, they may never recover! ;) We have such wonderful and generous friends and family, and we are so grateful to all of you. We know this has been a long, exhausting year for everyone, and we are thankful for all of the time and support everyone continues to offer us.
xo
L
We just finished a really busy and fun 2 weeks with my family -- assorted aunties, uncles, cousins and grandpa all flew in from all over the country to visit us and lend support -- it was so much fun, but by the end we realized how tired we were. Not just from the the visit, but from the last 6 or 7 weeks. We've been going non-stop since the boys got out of school in June -- we really wanted to squeeze all the fun out of this summer that we could, as it was such a hard year for all of us. And I think we did! Although we had some very hard days and a few hospital visits thrown in the mix, Andrew got to spend a lot of time and have a lot of fun with his boys this summer. Now things are winding down -- the four of us just stayed at the house for the last 3 days relaxing, sleeping, and generally behaving like vegetables. It's been really wonderful (and necessary).
I feel recharged and ready to head into all that awaits in the fall -- namely, a bone marrow transplant! It's sort of hard to believe that we've been waging this fight for nearly a year. I'm sad to think that we have to explain the situation to a whole new set of teachers at the boys' schools -- we were really hoping this would be behind us by now -- but ... he's alive (!), he's doing really well, and we've absolutely learned how to appreciate every new day together. Everything appears to be moving in the right direction -- things can get very bad and very scary from time to time, but Andrew always rallies, always bounces back! It's amazing to me how strong he is, no matter what is thrown at him. Andrew heads to the city today to meet with the transplant doctor, who will check his levels and explain everything that is going to happen over the next few months. We were told that once the cancer is put into remission, there is a very small window of time in which to perform the transplant. The best news is that we think we have a donor -- Andrew's youngest sister Julie! Though some test results are still pending, Dr. Z says it looks very favorable. Andrew sent a funny email to all of his siblings letting them know that Julie had "won" the sweepstakes.
Later, I'll add some pictures from our summer fun, and also write a post about Sloan Kettering. It's been wonderful and frustrating at the same time, and deserves it's own entry!
Another round of thanks for all of the love and help we've received this summer. The boys both had birthdays this summer, and they were showered with so many gifts and so much love, they may never recover! ;) We have such wonderful and generous friends and family, and we are so grateful to all of you. We know this has been a long, exhausting year for everyone, and we are thankful for all of the time and support everyone continues to offer us.
xo
L
Monday, August 6, 2012
home at last
After some more transfusions today, Andrew was discharged. We are so happy and relieved, as this has been a really traumatic week for both of us. The fever and other complications were worrisome, and as per usual, we never seem to realize the severity of things until we're mostly through it. Andrew is feeling pretty good now, though weak, and said that he didn't quite realize how sick he was until he started to feel better. The most unsettling part is that these infections seemingly pop up, full-blown out of nowhere. No warning signs or ramping up to alert you that something is not right. But he's back on the mend (although I'd put money on round 2 being delayed another week).
And he's losing his hair again -- my poor guy. He had finally grown back all of this lovely salt-and-pepper hair, after months and months of waiting. The ICE has put an end to that -- it's falling out in large clumps. Andrew has been entertaining the boys by telling them to pull his hair -- when they saw the big tufts in their fingers, they laughed with amazement. Not sad or scary to them, just cool!
It's so wonderful to have him home. When he's not here the emptiness is so deep and wide.
And he's losing his hair again -- my poor guy. He had finally grown back all of this lovely salt-and-pepper hair, after months and months of waiting. The ICE has put an end to that -- it's falling out in large clumps. Andrew has been entertaining the boys by telling them to pull his hair -- when they saw the big tufts in their fingers, they laughed with amazement. Not sad or scary to them, just cool!
It's so wonderful to have him home. When he's not here the emptiness is so deep and wide.
Friday, August 3, 2012
Back to Bennie
Andrew had to be hospitalized this week with a neutropenic fever. R-ICE chemo is very similar to the hyper-CVAD that he had early on, in that it wipes out all of his bone marrow function, leaving him very vulnerable to disease. Well, he caught an infection and spiked a 102 fever which lasted about 3 days. So we headed back to Benedictine under the guidance of Dr. Zelenetz and our original oncologist, Dr. Waheed. The 2 are coordinating care, so that Andrew can stay local until our next appointment at MSK on Thursday. It's looking unlikely that he will be ready to start round 2 by next Friday -- his white counts and platelets are rock bottom right now, but you never know. He's already received 3 bags of RBC's and 3 bags of platelets for support, as well as numerous antibiotics, anti-fungals, etc. He was quite sick for a few days, but he always seems to rally remarkably well -- today he was feeling much better and anxious to come home. Dr. W said he'll probably be there through the weekend.
It was kind of strange coming back to Benedictine(Bennie) after all this time. It was great to see Dr. W. again, but Andrew was so incredibly unwell the last time we were there -- strange memories of a very scary time. It really is the place to go for a pleasant hospital stay though -- so quiet and peaceful, nothing like the noisy, busy, fluorescent hospitals we've been at ever since. The lighting is soft, the rooms are large and private (no crazy roommates!) the floor is so quiet, and the view is of the mountains. They do treat the sickest patients very well there.
It was kind of strange coming back to Benedictine(Bennie) after all this time. It was great to see Dr. W. again, but Andrew was so incredibly unwell the last time we were there -- strange memories of a very scary time. It really is the place to go for a pleasant hospital stay though -- so quiet and peaceful, nothing like the noisy, busy, fluorescent hospitals we've been at ever since. The lighting is soft, the rooms are large and private (no crazy roommates!) the floor is so quiet, and the view is of the mountains. They do treat the sickest patients very well there.
Sunday, July 22, 2012
Chemo #2 -- or is it #3?
On Thursday Andrew and I went to the city for the appt. with Dr. Z. There wasn't much that was "new", although the bone marrow biopsy came back clean -- great! It's still an aggressive DLBC lymphoma, expressing CD+5. It's a fairly new classification of DLBC, so there isn't much written on it yet that I could find. The FISH tests are still pending, but Dr. Z is ready to move ahead with the R-ICE regimen. He arranged for Andrew to have another PET that evening, to see what has changed in the last month, and to inform the dosage of chemo. Friday morning Andrew started the Rituxin, and today he will be admitted to MSK for a 3 day round of ICE -- you can google it :)
He'll get an injection of neulasta on Thursday to stimulate the white blood cells, then home. In 23 days we do the whole thing again. After the 2 rounds, DR. Z will give Andrew another PET to see if the drugs are working. If not, we'll move on to cocktail #2. The immediate goal is remission.
I'm down to giving just the facts these days. We're scared right now, and I'm finding it hard to write the way I could in the past. But I do want to keep everyone informed -- we've been amazed by the outpouring of support, and are so grateful. I'm not sure how we would have made it this far without all of the help, love and good wishes we've received. We're also being taken very good care of at MSK, which removes some of the fear. So keep your fingers crossed for Andrew today. It's traumatic to head back into the chemo after all he's been through, but as always, he endures everything without complaint.
He'll get an injection of neulasta on Thursday to stimulate the white blood cells, then home. In 23 days we do the whole thing again. After the 2 rounds, DR. Z will give Andrew another PET to see if the drugs are working. If not, we'll move on to cocktail #2. The immediate goal is remission.
I'm down to giving just the facts these days. We're scared right now, and I'm finding it hard to write the way I could in the past. But I do want to keep everyone informed -- we've been amazed by the outpouring of support, and are so grateful. I'm not sure how we would have made it this far without all of the help, love and good wishes we've received. We're also being taken very good care of at MSK, which removes some of the fear. So keep your fingers crossed for Andrew today. It's traumatic to head back into the chemo after all he's been through, but as always, he endures everything without complaint.
Wednesday, July 18, 2012
Phase II
Andrew had his biopsy last Friday at Memorial Sloan Kettering Cancer Center (MSK, for short). Everything went very well, no problems, although he does have a rather large incision on his neck -- yikes! He's been feeling pretty good lately, considering. Just a bit tired, but with this massive heat wave coming through, we're all tired!
The surgeon told us the biopsy results would take 7-10 days to come back, but we just heard from MSK that they want us to come in tomorrow for an appt. with Dr. Z. I'm glad -- i asked if he could expedite things, and obviously he could. So tomorrow we get to find out what the second half of this madness will look like. I forgot to mention that Dr Z gave Andrew another bone marrow biopsy on our first visit (his favorite!), so we'll get those results, plus the results from the new node. Hopefully Dr. Z will now know which chemo cocktail is most likely to put this sucker in remission. Should be a busy few months -- keep your fingers crossed for us! :)
The surgeon told us the biopsy results would take 7-10 days to come back, but we just heard from MSK that they want us to come in tomorrow for an appt. with Dr. Z. I'm glad -- i asked if he could expedite things, and obviously he could. So tomorrow we get to find out what the second half of this madness will look like. I forgot to mention that Dr Z gave Andrew another bone marrow biopsy on our first visit (his favorite!), so we'll get those results, plus the results from the new node. Hopefully Dr. Z will now know which chemo cocktail is most likely to put this sucker in remission. Should be a busy few months -- keep your fingers crossed for us! :)
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