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.
Sunday, June 1, 2008
Sunday, April 27, 2008
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.
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.
Saturday, April 12, 2008
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.
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.
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.
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.
Thursday, April 3, 2008
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.
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.
Saturday, March 8, 2008
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
Tuesday, March 4, 2008
fun is good medicine
let's start by reporting that logan ate ALL of his pad thai when friends ruby and phil, along with ruby's mum heidi and sister zoe, took him to lunch at the royal thai restaurant last saturday.
then sunday was the boston celtics-atlanta hawks game, to which we were treated by the kind and generous charter school students in mr. williams' seminar class. 7th row loge seats, 4 of 'em, and i DID tell logan he could invite whomever he wanted; he was not required to bring his parents and sister! luckily (for us), he invited us, how sweet is that? logan will write a short note soon, but suffice it to say he had a raucously good time, as did we all. thank you CCLCS!
tonight, as i write this, logan is in fort myers, florida, on a 3 day teen-trip organized by dana farber's jimmy fund, to spend a day at red sox spring training. that will be a blog entry unto itself, one that logan will need to write, too...
these fun outings work wonders on a cellular level, it seems. logan is the strongest he has been since december. for 3 months he has been losing weight steadily, going from an athletic 160 to a disconcertingly low 120 lbs a few weeks ago. now, his appetite has returned big time, and he has bounced back to 135 lbs. this is a fantastic measure of his vitality, the reassuringly right direction to be heading.
or maybe it's the frequent home tutoring he is getting which is strengthening him, the energizing acupuncture treatments he is receiving in home visits by the generous arthur teubner, and always the fortifying emails and visits from friends. whatever the reason, something is working, or everything is working, and logan is looking and seeming a little more like his old self, albeit still bald, every day.
thursday we will start 3 more days of chemo, this time outpatient, meaning logan is not actually admitted to children's hospital. we will go in every morning, receive the chemo through the implanted broviac catheter, and stay with friends nearby every night. on milder days logan has taken little walks, or done some gentle time on the rowing machine. he even strapped some ankle weights on one day to walk around the house. therapy such as this is a full time job, with rewards as gratifying as it gets.
then sunday was the boston celtics-atlanta hawks game, to which we were treated by the kind and generous charter school students in mr. williams' seminar class. 7th row loge seats, 4 of 'em, and i DID tell logan he could invite whomever he wanted; he was not required to bring his parents and sister! luckily (for us), he invited us, how sweet is that? logan will write a short note soon, but suffice it to say he had a raucously good time, as did we all. thank you CCLCS!
tonight, as i write this, logan is in fort myers, florida, on a 3 day teen-trip organized by dana farber's jimmy fund, to spend a day at red sox spring training. that will be a blog entry unto itself, one that logan will need to write, too...
these fun outings work wonders on a cellular level, it seems. logan is the strongest he has been since december. for 3 months he has been losing weight steadily, going from an athletic 160 to a disconcertingly low 120 lbs a few weeks ago. now, his appetite has returned big time, and he has bounced back to 135 lbs. this is a fantastic measure of his vitality, the reassuringly right direction to be heading.
or maybe it's the frequent home tutoring he is getting which is strengthening him, the energizing acupuncture treatments he is receiving in home visits by the generous arthur teubner, and always the fortifying emails and visits from friends. whatever the reason, something is working, or everything is working, and logan is looking and seeming a little more like his old self, albeit still bald, every day.
thursday we will start 3 more days of chemo, this time outpatient, meaning logan is not actually admitted to children's hospital. we will go in every morning, receive the chemo through the implanted broviac catheter, and stay with friends nearby every night. on milder days logan has taken little walks, or done some gentle time on the rowing machine. he even strapped some ankle weights on one day to walk around the house. therapy such as this is a full time job, with rewards as gratifying as it gets.
Thursday, February 28, 2008
red, white and stem
today is an exciting day.
we got the call from children's hospital that there are enough stem cells present, and at the precisely right stage, for harvesting to happen, so brian and logan were off for boston within moments. this is a rather delicate and ephemeral window of opportunity: the stem cells, produced by stimulating the bone marrow with daily shots of the incredibly expensive and short-supply leukine, must be in plentiful density and just the right stage of development. harvest a day too soon, there are not enough, harvest a day too late, and they are past their prime for the later purpose of regenerating bone marrow after super chemo. before our last cycle of chemo, a series of leukine shots yielded nothing, as a blood infection precluded the possibility of any harvesting. yep, it's a good day.
at the same time, logan's hematocrit (red blood count) is low, so he will also be getting a transfusion. this time, it will be his mum's blood, as we have the same blood type and i was able to direct my most recent donation at children's for his use. medical technology is truly amazing.
yesterday logan and i stopped by his alma mater, CCLCS, to pick up four 7th row (talk about amazing) celtics tickets for sunday's game. these were so kindly earned by the seminar students of tony williams at charter, and we had the double treat of walking into a faculty/staff meeting, and getting to see so many of the supportive crew who keep showing up to help us in so many ways through this journey. the game should present some awesome photo opps, so i'll be posting more soon...
and a reminder: logan's high school, nauset regional in eastham, is holding a blood drive on march 5. three history teachers have created a challenge: if more than 125 pints of blood are donated, they will shave their heads. this is one way in which those with good health can help many who are in need of help, like logan. call nauset at 508 255-1505 for more info and to sign up. please come donate if you can!
~kim
we got the call from children's hospital that there are enough stem cells present, and at the precisely right stage, for harvesting to happen, so brian and logan were off for boston within moments. this is a rather delicate and ephemeral window of opportunity: the stem cells, produced by stimulating the bone marrow with daily shots of the incredibly expensive and short-supply leukine, must be in plentiful density and just the right stage of development. harvest a day too soon, there are not enough, harvest a day too late, and they are past their prime for the later purpose of regenerating bone marrow after super chemo. before our last cycle of chemo, a series of leukine shots yielded nothing, as a blood infection precluded the possibility of any harvesting. yep, it's a good day.
at the same time, logan's hematocrit (red blood count) is low, so he will also be getting a transfusion. this time, it will be his mum's blood, as we have the same blood type and i was able to direct my most recent donation at children's for his use. medical technology is truly amazing.
yesterday logan and i stopped by his alma mater, CCLCS, to pick up four 7th row (talk about amazing) celtics tickets for sunday's game. these were so kindly earned by the seminar students of tony williams at charter, and we had the double treat of walking into a faculty/staff meeting, and getting to see so many of the supportive crew who keep showing up to help us in so many ways through this journey. the game should present some awesome photo opps, so i'll be posting more soon...
and a reminder: logan's high school, nauset regional in eastham, is holding a blood drive on march 5. three history teachers have created a challenge: if more than 125 pints of blood are donated, they will shave their heads. this is one way in which those with good health can help many who are in need of help, like logan. call nauset at 508 255-1505 for more info and to sign up. please come donate if you can!
~kim
Monday, February 18, 2008
8 weeks out
a quick look at my 2008 monthly planning guide, which is now exclusively dedicated to logan's treatment and activities, indicates tonight as the 8 week 'anniversary' of logan's first day at children's hospital. logan is currently in the middle of round three of chemo. what they told us is true: this rollercoaster of treatment and recovery is becoming almost routine. he is due to come home tomorrow, and seems to be handling this 5 day session of I.V. chemo well.
the week prior to this round logan was seeing a tutor from school nearly every day, and starting to catch up with midterm exams. friends have visited us in truro, and we love that. we have learned to change the huge vials of vancomycin, which with the portable pump provided infusions of antibiotics to combat the gram positive staph infection in his blood. these ended with the start of this round of chemo, and we are hoping that infections will be kept at bay. this is why it is important to be well, and have clean hands, whenever anyone comes to visit.
oh and BIG news: logan's braces have finally come off! after 4 years, he can give big broad smiles without fear of blinding people with the reflective glare off of the shiny wires. logan is doing an exemplary job brushing and flossing his new look. now that's progress...
on the top of the right column i've posted a simple but much appreciated way people can help us out. please read and consider giving whatever you can. thanks so much~
kim
the week prior to this round logan was seeing a tutor from school nearly every day, and starting to catch up with midterm exams. friends have visited us in truro, and we love that. we have learned to change the huge vials of vancomycin, which with the portable pump provided infusions of antibiotics to combat the gram positive staph infection in his blood. these ended with the start of this round of chemo, and we are hoping that infections will be kept at bay. this is why it is important to be well, and have clean hands, whenever anyone comes to visit.
oh and BIG news: logan's braces have finally come off! after 4 years, he can give big broad smiles without fear of blinding people with the reflective glare off of the shiny wires. logan is doing an exemplary job brushing and flossing his new look. now that's progress...
on the top of the right column i've posted a simple but much appreciated way people can help us out. please read and consider giving whatever you can. thanks so much~
kim
Wednesday, February 6, 2008
round two: and today is a good day
in the last few weeks, the relative routine of chemo treatments has fallen into place: every three weeks there is a different combination of chemicals designed to kill the fast growing cancer cells, which in their virulence take out other fast growing cells, like hair, red and white blood cells, and gut lining cells as well. then there is the fatigue, the nausea, and gradually the swing back up to feeling better again. i had given logan a buzz cut in mid january, before his hair began to come out. since the second chemo on january 24, the remaining short hair started to rub onto the pillow, so we have shaved off the rest. logan has gained a little, lost a little, a gentle see-saw reflecting his waxing or waning appetite, or more accurately, his simple tolerance for food.
the last week has been different in that we experienced some new events: visiting nurses, who make daily visits to monitor vital signs and administer shots to stimulate stem cell production, also draw blood to follow the blood counts. last thursday night his oncologist called for me to bring logan in for a blood transfusion in boston the next day, the first such call. two days later, he had a fever and brian took him to cape cod hospital; patients on chemo are sent back to children's hospital to receive IV antibiotics, and so it was an ambulance ride for logan.
i flew over so that we could watch the superbowl together, my one birthday wish. his roommate this time was a 14 year old inner city boy whose mother and 2 aunts did not know the rules of football. so while carl calmly explained, we mom types were hootin' and hollerin' and having a fun time. well we all know the patriots lost, but logan and i were really happy to have seen it with such animated neighbors.
today is day 4 of his current impromptu hospital stay, and a CT scan was done to measure the progress of the tumors' shrinking. the larger one near his kidneys has decreased by 20-25% of its original size, and the smaller one on the lymph node has been nearly halved. he no longer needs drastic blood pressure meds because the kidneys and blood vessels are no longer being compressed by the giant bully tumor. we feel badly for the patriots, but these numbers dwarf the superbowl score dramatically... and we have done only 2 of the 5 chemo rounds so far. (did you catch my reference to the tumor as being a 'giant'? the patriots will be avenged.)
out of the kindness of a cclcs family, 2 celtic tickets for tonight's game were made available for logan. he has done well enough with his recovery from this week's blood infection that children's hospital is letting brian take logan to the game tonight. they will return to the hospital for another day, but it feels like a beautifully timed celebration for this wondrous news. that the tumors are on the retreat, and though there are still unexpected difficulties day to day, in the long run we are making palpable, measurable progress.
the last week has been different in that we experienced some new events: visiting nurses, who make daily visits to monitor vital signs and administer shots to stimulate stem cell production, also draw blood to follow the blood counts. last thursday night his oncologist called for me to bring logan in for a blood transfusion in boston the next day, the first such call. two days later, he had a fever and brian took him to cape cod hospital; patients on chemo are sent back to children's hospital to receive IV antibiotics, and so it was an ambulance ride for logan.
i flew over so that we could watch the superbowl together, my one birthday wish. his roommate this time was a 14 year old inner city boy whose mother and 2 aunts did not know the rules of football. so while carl calmly explained, we mom types were hootin' and hollerin' and having a fun time. well we all know the patriots lost, but logan and i were really happy to have seen it with such animated neighbors.
today is day 4 of his current impromptu hospital stay, and a CT scan was done to measure the progress of the tumors' shrinking. the larger one near his kidneys has decreased by 20-25% of its original size, and the smaller one on the lymph node has been nearly halved. he no longer needs drastic blood pressure meds because the kidneys and blood vessels are no longer being compressed by the giant bully tumor. we feel badly for the patriots, but these numbers dwarf the superbowl score dramatically... and we have done only 2 of the 5 chemo rounds so far. (did you catch my reference to the tumor as being a 'giant'? the patriots will be avenged.)
out of the kindness of a cclcs family, 2 celtic tickets for tonight's game were made available for logan. he has done well enough with his recovery from this week's blood infection that children's hospital is letting brian take logan to the game tonight. they will return to the hospital for another day, but it feels like a beautifully timed celebration for this wondrous news. that the tumors are on the retreat, and though there are still unexpected difficulties day to day, in the long run we are making palpable, measurable progress.
Monday, January 28, 2008
hello from puerto rico!
just a quick note to let all my friends and family know about the blog i will be writing as a sail around the world with semester at sea: http://idunne.blogspot.com
i talked to logan and the rest of my family yesterday and today, and after we leave san juan tonight the internet will be my only means of communication. i'll be taking lots of pictures though. no superbowl on the ship, but the news that logan is back at home and just recieved a personalized autographed picture from the patriots' wes welker is good enough for me!
much love to all, ill see you when im back in may.
-izzy
just a quick note to let all my friends and family know about the blog i will be writing as a sail around the world with semester at sea: http://idunne.blogspot.com
i talked to logan and the rest of my family yesterday and today, and after we leave san juan tonight the internet will be my only means of communication. i'll be taking lots of pictures though. no superbowl on the ship, but the news that logan is back at home and just recieved a personalized autographed picture from the patriots' wes welker is good enough for me!
much love to all, ill see you when im back in may.
-izzy
Tuesday, January 22, 2008
Good Enough To Write
Hey Everyone, it's Logan
Now that I'm in my last week before my second round of treatment, I'm feeling the best I've felt in a while. It's great to hear from all of you, and even to see a few of you. All of your thoughts and prayers have really lifted my spirits and are helping me through the tough patches. I'm going back to Boston this Wednesday ( 1/23/08) and might be back home Saturday or Sunday.
Thanks again for all the support -Logan
Now that I'm in my last week before my second round of treatment, I'm feeling the best I've felt in a while. It's great to hear from all of you, and even to see a few of you. All of your thoughts and prayers have really lifted my spirits and are helping me through the tough patches. I'm going back to Boston this Wednesday ( 1/23/08) and might be back home Saturday or Sunday.
Thanks again for all the support -Logan
Saturday, January 19, 2008
healing happens
my response to this challenge for logan (and our family) has been, from the beginning, that something good will come of it. somehow, it was the only way to frame it, in my heart and out loud for logan, period. the outpouring of love and affection for logan manifests that belief for me. perhaps you have read in the comments that the 'periodic table of elements' at his alma mater, cape cod lighthouse charter school, became an impromptu shrine for logan's healing; then the students clamored to do something concrete, to send a box of goodies. now comes word that the cclcs student government is creating an ongoing project to help other cclcs alumni/students similarly challenged, extending this one response of compassion into the future, to help others as well... they call it "charter cares". this gratifies me beyond my wildest dreams. and we're just 4 weeks into our challenge.
on the medical front, there is fantastic news: the miBg scan done thursday in boston revealed no spread of neuroblastoma cells beyond the known 2 masses (the one large mass described before, and one smaller mass under his clavicle). a different, previous scan cleared his bones, this one cleared his bone marrow. his response to the first round, 5 days, of chemo was tricky, and our return home was delayed daily for 4 days until the doctors were sure he was stable and comfortable enough to return home late monday night. they say it will become more routine the more chemo rounds he experiences. he has lost more weight, but in time, when his appetite returns to that amazing rate we all know and love, that will be easy to get back.
i gave logan a buzz cut in anticipation of hair loss, but he hasn't lost anything else yet. once upon a time, before this introduction to cancer 101, i had felt badly for patients who lost their hair. now i see it as a positive sign that the chemo is working: if the fast-growing cells, as in hair, are falling out, well then the fast-growing cells of cancer are likewise being pummeled out of the way. right on.
i gave logan a buzz cut in anticipation of hair loss, but he hasn't lost anything else yet. once upon a time, before this introduction to cancer 101, i had felt badly for patients who lost their hair. now i see it as a positive sign that the chemo is working: if the fast-growing cells, as in hair, are falling out, well then the fast-growing cells of cancer are likewise being pummeled out of the way. right on.
the students both at cclcs and nauset high have been super: as i read the comments out loud to logan i love that his friends are mostly concerned with basketball and surfing and just returning things to normal. what a great coping mechanism... to live in the present. other acts of kindness include word from his freshman nauset high school basketball coach that logan's name will appear in the scoring book for all games this year; logan just wishes he could contribute points in those columns as well! on the home fronts, brian's sister sue and cousin denise helped clean his house and stock his fridge, and for logan's return to little pamet, friends kristina and rosa organized a top-to-bottom house cleaning/luncheon, with mary jo, michael p, erin and eileen rounding out the team and stocking the fridge with logan favorites.
the cards, gifts, food and acts of generous compassion have buoyed us all and keep us swimming strong in an ever changing sea of reality. thank you all for keeping him in your healing thoughts and prayers. onward~
the cards, gifts, food and acts of generous compassion have buoyed us all and keep us swimming strong in an ever changing sea of reality. thank you all for keeping him in your healing thoughts and prayers. onward~
Saturday, January 12, 2008
homeward bound
hi everyone!
first i want to say thank you so much for all of the warm wishes and presents that have been sent my family's way in the past few weeks. logan loves the messages, cards, and visits, and i think they've really helped keep his spirits up. he is recovering pretty strongly from his first treatment, and after moving from ICU to the oncology floor, most of his IVs were taken out, so things got a little simpler. i visited him a few times this past week, and though he's sleepy a lot because of his medications, he perks right up when he has visitors. this past sunday, ty, logan, and i all played a game of madden 04 (a football video game) as the patriots, of course! we destroyed the jaguars in the match up so hopefully that bodes well for tonight's game; logan is obviously pumped to watch it.
so, for an update: logan is expected to come home from the hospital tomorrow. it was originally thought that he'd be coming home thursday, but the trip keeps getting pushed back because the doctors want to make sure they get the medications just right so he'll be comfortable while at home. he does need to go back into boston on wednesday for some sort of appointment, but then he'll be at home to recover for a few weeks before the next treatment starts. it seems (for now, you never know) that logan will come back from boston tomorrow.
we're really excited for him to be home, since he's been in boston for 2 and a half weeks. i'm sure he'll want to see as many visitors as he can, but we have to keep in mind that his recovery is what's most important. my parents are probably going to figure out a way to manage everything once logan's settled in. my mom has been unable to update the blog while in boston because the wireless internet at the hospital blocks social networks, but she will be updating more thoroughly in a day or two. for that reason logan has been unable to read all of the comments on this site personally, but we have all been telling him who's writing what, and i'm sure as soon as he feels up to it he'll be reading and writing on this blog all the time.
once again thank you for all your support! we are blessed to have family and friends like all of you.
first i want to say thank you so much for all of the warm wishes and presents that have been sent my family's way in the past few weeks. logan loves the messages, cards, and visits, and i think they've really helped keep his spirits up. he is recovering pretty strongly from his first treatment, and after moving from ICU to the oncology floor, most of his IVs were taken out, so things got a little simpler. i visited him a few times this past week, and though he's sleepy a lot because of his medications, he perks right up when he has visitors. this past sunday, ty, logan, and i all played a game of madden 04 (a football video game) as the patriots, of course! we destroyed the jaguars in the match up so hopefully that bodes well for tonight's game; logan is obviously pumped to watch it.
so, for an update: logan is expected to come home from the hospital tomorrow. it was originally thought that he'd be coming home thursday, but the trip keeps getting pushed back because the doctors want to make sure they get the medications just right so he'll be comfortable while at home. he does need to go back into boston on wednesday for some sort of appointment, but then he'll be at home to recover for a few weeks before the next treatment starts. it seems (for now, you never know) that logan will come back from boston tomorrow.
we're really excited for him to be home, since he's been in boston for 2 and a half weeks. i'm sure he'll want to see as many visitors as he can, but we have to keep in mind that his recovery is what's most important. my parents are probably going to figure out a way to manage everything once logan's settled in. my mom has been unable to update the blog while in boston because the wireless internet at the hospital blocks social networks, but she will be updating more thoroughly in a day or two. for that reason logan has been unable to read all of the comments on this site personally, but we have all been telling him who's writing what, and i'm sure as soon as he feels up to it he'll be reading and writing on this blog all the time.
once again thank you for all your support! we are blessed to have family and friends like all of you.
Sunday, January 6, 2008
the beginning of the journey, to date
now comes the news for which i feel little prepared. logan has been in the i.c.u. at children's hospital since christmas eve morning, with a cancerous mass growing in his kidney/adrenal/spleen area. there came a week of waiting, while medical teams attempted to bring blood pressure and pain under control to allow comprehensive tests. from the biopsy which was done monday december 31st, they say it is a neuroblastoma, 10 cm across, about the size of a large grapefruit. the mass is rather wrapped around alot of blood vessels so they can't cut it out first thing; it looks like there will be 5 rounds of chemo to shrink it first, then surgery, then 2 more rounds of heavier chemo (with stem cells extracted earlier replenished after the chemo), then radiation. we met with the oncology team on thursday, january 3rd to hear more details, like his possible inclusion in a research study which adds a T cell infusion near the end of treatment. it is a testament to his stamina and strength that he managed as well as he did in december when the symptoms were rapidly developing, keeping up with schoolwork and basketball.
amazingly, one of logan's biggest concerns in all this is not the medical treatment and recovery, but that he wants to keep up with his schoolwork as best he can. i explained that repeating freshman year is an option, and that his transcript for college would explain it was for medical reasons, as his guidance counselor explained to me. however, he wants to graduate with his class. when tutoring is available, when recovery from chemo allows him, he wants to master his material. while my concerns were all about procedures and recovery, his are about schoolwork, and getting active again. he has recovered from severe injury before (remember the cerebral hematoma in 5th grade, and the metal plate in his skull now) and is a strong, otherwise healthy and enthusiastic young man. he seems certain of the healing and is already looking ahead to normal concerns that teenagers have.
i am so grateful he is in the best hands, and that he is a fighter. while the first 12 days were all about managing the high blood pressure and intense pain caused by this mass pressing against his organs, he did refuse morphine so he could watch the patriots win their 16th history-making record setting win, without falling asleep. at one point earlier in the week i was ready to cry after talking to a gaggle of oncologists and surgeons; logan intuitively took my hand and profoundly said 'we just have to trust them, mama.' he also said we just had to trust the patriots when they were down by 12 in the 4th quarter that night. this is why i am strong: because he is, and because i have to be, for him.
friday, january 4, logan had a double line broviac catheter implanted in his chest, which will preclude the need for IV's in his arms. it is semi-permanent, allowing chemo and medications to flow into a major blood vessel, and for blood to be removed from his body. surfing and swimming are not an option with this line, but it does make one heck of a body piercing ornament, as isadora points out. this past weekend he received the first round of chemo.
sunday, after the first overnight infusion, he felt remarkably better, further enhanced by weekend visits from classmates lily, peter and chloe. sister clementine brought a bag of handmade cards from dozens of classmates, and i saw logan laughing for the first time in a long time. the visits, the cards and the love sent logan's way are truly big medicine. that, and the sense that the journey to recovery has now begun, makes the new year suddenly feel full of hope and promise.
~kim
amazingly, one of logan's biggest concerns in all this is not the medical treatment and recovery, but that he wants to keep up with his schoolwork as best he can. i explained that repeating freshman year is an option, and that his transcript for college would explain it was for medical reasons, as his guidance counselor explained to me. however, he wants to graduate with his class. when tutoring is available, when recovery from chemo allows him, he wants to master his material. while my concerns were all about procedures and recovery, his are about schoolwork, and getting active again. he has recovered from severe injury before (remember the cerebral hematoma in 5th grade, and the metal plate in his skull now) and is a strong, otherwise healthy and enthusiastic young man. he seems certain of the healing and is already looking ahead to normal concerns that teenagers have.
i am so grateful he is in the best hands, and that he is a fighter. while the first 12 days were all about managing the high blood pressure and intense pain caused by this mass pressing against his organs, he did refuse morphine so he could watch the patriots win their 16th history-making record setting win, without falling asleep. at one point earlier in the week i was ready to cry after talking to a gaggle of oncologists and surgeons; logan intuitively took my hand and profoundly said 'we just have to trust them, mama.' he also said we just had to trust the patriots when they were down by 12 in the 4th quarter that night. this is why i am strong: because he is, and because i have to be, for him.
friday, january 4, logan had a double line broviac catheter implanted in his chest, which will preclude the need for IV's in his arms. it is semi-permanent, allowing chemo and medications to flow into a major blood vessel, and for blood to be removed from his body. surfing and swimming are not an option with this line, but it does make one heck of a body piercing ornament, as isadora points out. this past weekend he received the first round of chemo.
sunday, after the first overnight infusion, he felt remarkably better, further enhanced by weekend visits from classmates lily, peter and chloe. sister clementine brought a bag of handmade cards from dozens of classmates, and i saw logan laughing for the first time in a long time. the visits, the cards and the love sent logan's way are truly big medicine. that, and the sense that the journey to recovery has now begun, makes the new year suddenly feel full of hope and promise.
~kim
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