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

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.

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.

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.

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!  :)

Full circle

I discovered something yesterday.  While researching info on the bone marrow transplant, I came across a sentence in a hematology journal that discussed using initial chemo to reduce tumor bulk, and then consolidating the treatment with the transplant.  And I finally understood ... when Dr. Liu (way back in Westchester) had told us that the transplant was a given, he knew that the upfront chemo was not going to eliminate the disease.  We had asked at the time if the transplant was necessary, and he had  said, "oh, yes."  But then we were forced to leave Westchester and go to Albany.  At Albany, the protocol is -- transplant as second line therapy, only after relapse.  But they don't even have a transplant unit at Albany, and possibly don't have a culture around that treatment.  Dr. Liu and his partner Dr. Ahmed (the lymphoma-maniac) are very experienced hematologists.  I think they knew from the beginning that Andrew's lymphoma was so aggressive that the plan was always to use the frontline chemo to just reduce the bulky disease, and then they would go after it hard with the high-intensity chemo and transplant consolidation.  This doesn't change anything for us -- obviously, that's what we're scheduled for now.  But we might have been saved all of the grief over that last PET scan, had we understood that the transplant was always the endgame.

After we were moved to Albany, I always had a nagging worry about what Dr. Liu had said, because he was so adamant.  But when Albany said it was not part of their frontline approach, we really had no choice -- he needed to continue with treatment.  And we wanted to believe that it wasn't necessary.
Finding that little tidbit has actually made me feel a lot better -- like some unanswered questions had been put to rest -- that we're proceeding with the proper course of treatment, rather than trying to salvage some unexpected, dire situation.  You cling to the little things, I guess ...

not dead yet

Andrew titled this post -- fortunately, he keeps his sense of humor throughout.  Sometimes it's a real drag to be such tragic figures, day in and day out, so he told me to update the blog with "not dead yet" and leave it at that.

But I know that many of you would like some actual details, so ... We finally made it to Sloan Kettering last Thursday.  We had a very long, thorough visit, which was satisfying if not happy.  We're just so comforted to be there, in this place where all they do is think about cancer, treat cancer, all day long.  We first met with one of Dr. Z's medical fellows.  I can't remember his name, but he was lovely and had really done his homework on us.  He said he wanted to relate back to us our entire journey from the  beginning, and that we were to jump in if he missed anything.  Obviously, this was not something he could do if he only viewed Andrew's chart for 10 minutes prior to our visit.  He knew every detail -- and that was just so amazing.  We've seen so many doctors during all of our many hospital visits, and you end up telling each of them the same story over and over.  Here, he told us our story!  Off to a good start.

After the medical fellow had finished the history and examined Andrew, Dr. Z came in.  We didn't have to go over the whole history again, he just got right down to it.  Everything in cancer, he told us, starts with the diagnosis.  And Andrew's diagnosis has even stumped Sloan Kettering's top doctors and pathologists.  Without a definitive diagnosis it's very difficult to know which drugs to give, because some are only effective on certain types and so forth.  Dr. Z believes that Andrew's rare cancer is most likely a small cell leukemia that transformed into a large cell lymphoma.  The types are difficult to distinguish -- it looks a lot like a mantle cell (which they thought at Westchester), and also kind of like a CLL (type of leukemia), which Dr. E had thought at Albany.  The problem is that they can't say with 100 percent certainty because it's demonstrating certain gene markers of each, but not all.  So, they're planning to continue testing the tissue block from the original biopsy, plus take a biopsy of a new node that has appeared on andrew's neck.  Cancer is very smart, unfortunately.  It keeps changing and mutating, so after a few months you may have something very different than what you started with.

Fortunately, Dr. Z confirmed that all of the treatment Andrew received thus far was appropriate -- no mistakes were made.  It's just possible that the chemo was likely never going to have worked.  He said we really should have seen a clean PET after the first rounds of hyper-CVAD.  We saw a lot of improvement, but it should have been clean.  So ... Dr. Z does not favor the autologous stem cell procedure that was recommended at Albany.  He said that stem cell transplant is not an appropriate term -- it should be called stem cell rescue -- and that what Andrew needs is an actual transplant, which would come from donor bone marrow.  Essentially, the stem cell rescue is just more chemo, and would not ultimately be effective for Andrew.  What Andrew will get is called an allogeneic bone marrow transplant.  He will receive high intensity chemotherapy to put the cancer into remission, followed by a transplant from (hopefully) one of his siblings.  The chemo will be much more intense than the hyper-CVAD he originally received.  In an effort to destroy the cancer cells, it will literally destroy his bone marrow/immune system, thus the need for a transplant.  It's kind of like the bionic man -- "we can rebuild him!"  The first challenge though, is to get a better diagnosis so they know which chemo will be most likely to put the cancer in remission.  Andrew will have a biopsy this week (still waiting on details), and they will use that info to make a decision.  I'm hopeful that the chemo will then start next week.  They do want to start things as soon as possible, because you don't want to give the cancer more opportunity to grow.  He's feeling pretty good now, though fatigued.  I'm glad he's stronger going into this than he was last November.  It won't be easy for him, but we're hopeful.  Dr. Z is so confident and knowledgable -- we're so grateful that we're under his care.

I will try to update more regularly, though sometimes it's just so hard to write about it.  Andrew sends all of his thanks for the love and support.  He's doing well right now, and is feeling very positive and ready to tackle the next phase.

xo
L