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.