walking with sisyphus

to those who have not heard updates on logan's treatment since april, i apologize. when choices came down to being with logan or blogging, family duties or blogging, work or blogging, or having some healthy fun (even sleeping) or blogging, blogging always lost. i hope to follow this update with more recent news soon after...

april, as t.s.eliot wrote, is the cruelest month. surgery, as posted previously, was tougher than we'd expected, and enduring endless days with numerous tubes and catheters draining every cavity of his body was no joy ride for our boy. the surgeon, our heroic surgeon, was pleased with logan's healing, but cautioned us that it could take up to a year to recover fully (that 6 week estimate was just about the initial healing). given the 3 layers of abdominal muscles which were incised with a foot-long slice, that seems entirely plausible.

after persisting with the dignity and patience of sisyphus to keep rolling up the steep slope of recovery, logan gradually regained some strength and his upbeat outlook. he has yet to stand up fully straight, but with time and physical therapy that will come back, too. he began craving spiritus pizza and chocolate shakes, which must have some mystic powers; because of the lapse in regular chemo due to the surgery and recovery, logan had begun to see hair on his head and meat on his bones. yet on the roller coaster of cancer treatment, that only means that once again it is time to knock the cancer, and therefore logan, back down. it is the process we must endure to get to the other side, and we know it. the fifth round of chemo commenced on april 24. at times i envied sisyphus, who at least knew exactly what to expect when he got the boulder back to the zenith of his hill.

april finished out with another trip to children's hospital (seems like it's a rare week we are not in boston these days), this time for an MiBG scan, once more looking for evidence of any active cancer cells. again, logan was injected with the radioactive isotope, which will cling to active cancer cells, thus revealing them in a scan. the night between the injection and the scan, we were treated by friend mark silva to red sox tickets, against toronto, on the third base line. always on the lookout for an 'up' to pair with every 'down', we had fun, bundled in soft blankets against the cool night air and the hard fenway seats. logan even ate a fenway frank, and kept it down, which alone made for an awesome outing.

the next day the MiBG scan was run (which takes all morning). it is not outright painful but quite uncomfortable, logan having to lie still as stone on a rather unforgiving bed which slides through the incredible machine. here, again, we have another 'up' note: there appear to be no active cancer cells, the best news possible.

later we met with the head transplant specialist to learn the intricacies and dangers of the approaching high dose chemo with stem cell rescue (which i have referred to as 'super chemo' but that is not the medically sanctioned term), due to start later in may. this meeting was a bit heart breaking, to get the news that logan's summer was to be nothing but intense treatment with a lot of isolation. he had held out hope to enjoy perhaps a few weeks of real summer in august, with the tantalizing dream of catching a few waves and working his cherished summer job at spiritus pizza. on that day with the transplant specialist, we were soberly adjusting our expectations downward, when the office door flew open and the activities director for the jimmy fund popped her head in the door and asked: 'hey, would you like some front row seats to tonight's red sox game?!' it's amazing how quickly a mood can swing from dismal dread to joyful anticipation; before the day was done, and through a series of crossed signals, somehow we had a total of 6 tickets come our way! it was may 1, cruel april now behind us.

so instead of dwelling on coming cancer battles, we focused on arranging our triumphal return to fenway, complete with friend evan elman and cousin dan kettler. the icing on the cake was sitting with our kind ticket donors, who give generously to the jimmy fund and who are part of the red sox ownership. they were kind and gracious as could be, and invited our 4 guests (who had some fabulous tickets in the emc balcony behind home plate) to join us in 4 other adjoining front row seats. what bliss! all 6 of us were close enough we could have touched each red sox player as they waited to bat; one foul ball bounced our way, and logan got to keep it. friends watching us at home could see us on tv whenever a lefthanded batter was up.

after all that, really the best part for me was talking with logan about our experience on the way home. he talked about how much more fun it was taking friends along; their joyfulness of being included in red sox 'manna from heaven' made logan realize how rewarding it feels to give to others. we hoped the generous owner felt as much happiness as we did, knowing he gave us all such an amazing night out together. logan loved having his cousin there, and our friend from cambridge whose family has shared their home with us often over the past 4 months, and he loved that they could each bring a friend (and therefore feel that joy in sharing), too.

and so i think about eliot's words that april is cruel, and of sisyphus eternally pushing the huge rock up the mountain, only to have it roll down again. at times the cancer treatments seem cruel for a young patient to endure, but unlike the mythic hero, logan will know progress, and healing, and sweet days ahead.

kindness floats

slowly but surely logan is recovering from his surgery of nearly 3 weeks ago. to me, he seems a little more subdued than his usual self, reminding me of what the surgeon told us: that it will take a good 6 weeks to heal fully from his operation. however, when a friend calls or comes by to play some video games, his smile illuminates the room once again. it could very well be that adults are just too boring and only want to talk about how he feels, when all logan wants to do is hang with his friends, hone his game skills... and be normal again. he is a teenager, after all.

a lot can happen in 2 weeks: logan was in children's hospital for about 12 days after surgery, and in that time stem cells were finally, successfully, harvested. the pheresis team was pleased with the quantity and quality of the stem cells retrieved over 2 days, but has decided it wants yet another harvest before 'super-chemo' begins in mid-may. this means we are back to daily shots of gs-cf, and while it is no picnic, we certainly see the wisdom have having plentiful reserves of stem cells at the ready, should logan need them all.

and now a word about the upcoming high-dose chemo: basically, in aggressively wiping out all fast growing cells and intending to target lingering cancer cells, the bone marrow itself is reduced to nothing. the stem cells, harvested earlier from his own body, will allow his bone marrow to re-generate and recover, so that it can again produce red and white blood cells and platelets. thus, logan will be confined to the hospital for a month, while his immune system rebuilds. he will need, i am told, lots and lots of platelets, which are harder to come by than blood. luckily, anyone can donate platelets, there is no blood-type restrictions, and children's hospital has a blood donor center which will accept platelet, as well as blood, donations. however, if anyone would like to donate, an appointment is necessary because they only have 2 platelet harvesting machines and the process takes 2 hours for each unit. platelet donations cannot be directed specifically to logan or anyone, because the shelf life is much shorter than for blood, but we know he will be needing lots of platelets come the second half of may and into june; it's likely that if you donate then, he will benefit directly from your donation. the number for the blood donor center at children's is 617-355-6677, if you want to schedule with them.

i will also put in a word for clementine: as a member of nauset's track team, she will be participating in the 'relay for life' next saturday, raising money for cancer research. she needs sponsors to help bring in donations for her efforts, and would appreciate anything you might want to donate to the american cancer society. email her at clem1390@hotmail.com, and she will fill you in. anything from $5 donations per luminaria (with which the track is illuminated) to any kind of amount will help fund cancer research. time is running out and she is shy to ask for donations, hence this last minute plea!

again, i extend our family's gratitude for all acts of kindness sent logan's way; i hope and intend to send out individual notes of thanks someday, but until that day, please know you continue to make a huge difference in our lives.

super men and wonder women

the title, to me, is in no way an exaggeration of the dozens of men and women who have teamed up to save logan from the evils of cancer and strive to return him back to good health. this week we had a surgical team, anesthesia team, pain management team, oncology team, ICU team, and the ever present legions of nurses. friday, april 4, the long-awaited and often-rescheduled 'back to school' presentation by dr. bob casey was a welcome ~yea, joyful~ chance for logan to be reunited with his classmates and teachers at nauset high, and for them to learn a little more about the facts of cancer and of logan's particular challenges. it felt like a loving embrace, with classmates cheering him on, which is of course the best part of being a friend, and standing with them in times like these.

the news from tuesday's surgery: after 14 hours of trying ever so delicately to separate the tumor from the kidney and arteries, the surgical team decided it was best to take the kidney out as well as the adrenal on logan's left side. this is one of those good news, bad news, deals: it's bad to lose a kidney (though not life threatening, lots of people live just fine with only one), yet its very good news to know that all of the cancerous tumor cells could be removed from the abdominal cavity by taking the kidney with it. apparently the dramatic success of the chemo shrinking the tumor resulted in an inflammation and scarring of tissue surrounding the tumor like the surgeon had never quite seen before.

of course, surgery is not the time when you want to hear how 'special' or 'one of a kind' your son is. as the surgeon described, the fantastic shrinkage of the tumor basically fused it to the kidney along all the capillaries which the tumor had formed to feed off the ample blood supply of the kidney. good news here definitely outweighs the bad: bottom line is that the aorta and vital organ-feeding arteries are intact and unharmed; the tumor, which yesterday was larger than a softball (meaning that originally the tumor was the size of a loaf of bread) is gone, and logan still has one beautiful, fully functional kidney and adrenal gland.

he was able to attend his grandmother's funeral in st louis just this past weekend, and actually be the 7th pallbearer (ceremoniously holding the back end of the coffin while the other 6 grandsons bore the weight of it on either side). somehow all of this coming at once keeps any one of these challenges from overwhelming us. we get a lot of perspective...

please spread the good news that he is on the mend, though he won't be back on cape until, at earliest, the end of next week. while the pain of the surgical site and recovery from anesthesia are intense, logan manages to endure it without a complaint, and to even ask for help moving his limbs every so often . he clearly understands the importance of putting forth his best effort, that while it is painful to move a little today, it will make it easier to move more tomorrow.

alas, the stem cell harvest has yet to happen, as his critical blood counts were too low before surgery, so the gm-csf (leukine) shots are being doubled with gs-cf (filgramostim), another stem-cell building stimulant. 2 shots a day for 5 days, and another attempt at stem cell harvest, our fingers are crossed that that illusive stem cell harvest will finally yield abundantly. super chemo cannot and will not happen without plenty of stem cells to rescue his bone marrow.

gracious thanks to the many who continue to send love, food, and parking vouchers. every act of kindness, no matter the size, is received with gratitude and joy.

and then it was april...

after that early march flurry of fun, the fourth round of chemo took place on march 10, 11 and 12; for the first time we did it all 'out-patient' at dana farber, instead of being admitted as an overnight patient at children's hospital. staying with our friends the elmans in cambridge, it was so much more pleasant than bunking in at the hospital. logan much prefers lee's cooking to 'room service' any day.

The subsequent 3 weeks have been all about staying strong and building up stem cell growth with daily shots in the stomach of leukine (aka sargramostim, or gm-cf). As described before, the leukine stimulates the bone marrow, boosting the production of stem cells, which are then harvested and saved for recovery after super chemo in may and june. that harvest which i was so happy to report about in february actually yielded very few usable stem cells. apparently, the harvest had been premature, so we've had the last 3 weeks in preparation to attempt another harvest.

for some inexplicable reason, logan has needed 4 blood transfusions and 4 platelet infusions since the last chemo. the previous 2 rounds had only required one set of blood transfusion/platelet infusion each. they tell us this is not unusual; the affect of the bone marrow being weakened is accumulative. while we have spent alot of time driving back and forth to boston and doing outpatient visits to remedy these chronic low blood counts, i look to the silver lining that the cancer must likewise be experiencing accumulative regression.

logan has had a good run of tutor visits, and inches closer to finishing his freshman history project. his topic? medieval medicine. given the rudimentary procedures and dismal success rates of medicine in the 6th through 15th centuries, we can agree we are very fortunate to have the medical wonders we have seen in the last few months!

on march 28, logan and i met with the pediatric oncology surgeon who will remove the primary tumor. we saw the latest CT scan, which showed further dramatic shrinkage of both the primary tumor and the secondary one underneath the clavicle. dr. weldon had plenty of sobering information and detailed what was involved in the day-long surgery, now scheduled for april 8. the tumor is basically wrapped around logan's aorta, at a point where numerous smaller arteries branch off to individual organs and bifurcate to supply blood to each leg. this is where the surgical team will set up camp for about 7 hours, carefully shaving away every last bit of tumor, all the while protecting these primary blood vessels from damage. he managed to sound upbeat and optimistic, and ended on a happy note that he has seen many tumors which had not shrunk by quite so much after 4 rounds of chemo. how can one not look forward to getting operated on by him?!

in this past week my mother passed away, and logan, clemmy and i will travel to st. louis this weekend for the funeral. when we return sunday, we will stay in boston in preparation for surgery. monday will be spent in pheresis, harvesting stem cells, and we hope for a bumper crop. over the last few weeks, days have flown by. while we were certainly busy with critical procedures and intricate coordination of logistical challenges, somehow i couldn't find the time to sit down and write about it. logan appreciates very much when people take the time to write, or call, and we promise to write again with news of the surgery.

Reflections on a Rainy Afternoon

Today is Saturday (March 8th), and it is raining.  I'm inside wandering around feeling trapped.  For the first time since the diagnosis I'm feeling normal, and all I can do is lay around.  Lucky for me however, the past week has been anything but normal.

 

Last Sunday the family (minus Izzy) and I went to Boston, not for medical reasons, but in order to see Kevin Garnett and the rest of Celtics play the Atlanta Hawks.  It was a great game, and the view was amazing from row 7 seat 3.  (this must have taken a lot of ice cream sundaes...thank you, CCLCS, for eating them all for me!) 

Less than 12 hours later, I was on a Cape Air flight back over to Boston.  Once in Logan Airport I met up with the Dana Farber Jimmy Fund group and I started my next adventure: a trip down to Fort Myers (where it is 80 degrees and sunny every day.) Monday was just a travel day, the real fun started Tuesday morning.  After breakfast we 32 teens from the Jimmy Fund and the 15 chaperones (a combination of doctors, nurses, and social workers) headed by bus to the field.  Before the game started we all got to meet some of the players.  Manny and Ortiz didn't come by, but I did get to meet: Alex Cora, Tim Wakefield, Kevin Youkilis, Clay Buchholz, Doug Mirabelli, Jon Lester, Mike Lowell, Hideki Okajima, and Dustin Pedroia.  After meeting the players, getting autographs and photos, we headed for our seats.  Well actually we headed for the air conditioned owner's box.  John Henry wasn't there, but there was all the free food a person could want: even an omelet bar complete with a chef waiting to make a custom omelet. The box itself was almost right behind home-plate. The only better seats were the announcer's box right next to us.  It was an exciting game with Dice-K pitching, and the Sox pulled out a win 5-3.  On the way back to the bus (which was waiting for us in the player's parking lot) one of the most memorable and unexpected things happened on all the trip.  Red Sox legend Johnny Pesky (as in  the "Pesky pole") came out to meet with our group .  He is a great guy and was more than happy to sign baseballs and take pictures.  Wednesday was mainly a travel day, but it did end with pad thai with our friends in Cambridge, so I would call it a good day.

 

Thursday I was expecting to go into my next round of chemo, but I was neutropienic (not enough white blood cells.) Being neutropienic, I couldn't get my chemo.  However my mom and I were not going to waste a day in Boston.  We ended up going to the Isabella Stewart Gardner Museum, followed by hot chocolate.  The next day I finally got home, thus ending a great week. 

Now it's Saturday and it's raining.  Now that my spring training trip is over, and I'm back home I find myself missing all of my friends.  One of the worst things about everything that's going on is that most of the time people don't know where I am because of all the unexpected schedule changes, and I don't know where they are.  When a situation has both of those two things going on, the end result is me sitting around the house on a Saturday with nothing to do, but feeling ready to do anything.  The re-scheduled chemo is Monday-Wednesday (if my white blood cell count is up) and the next big step after that is surgery (April 7) to get rid of the tricky tumor. 

 Thanks again for all the support, hearing from all of you can make all the difference between a good day and a great day.

-Logan