Our duck tour driver and host had a super hero name of "Super Size"; every mile or so he's shout out, "Super Size!" and the entire load of passengers would enthusiastically shout, "QUACK QUACK!" as only proper tourists should.
Nick and Kelsey got to take a turn driving the duck in the Charles River.
View from the top of the Prudential Building - Boston is really quite beautiful.Boston has been a fun trip so far; we took a duck tour yesterday and quacked up all over the city. We have tickets to tonight's Sox game so we'll take it easy today. My goodness, Boston loves their Sox! (addendum post - Sox beat Detroit 8-2; we took the "T" out to Fenway but walked back to the hotel - quicker.)
Our appointment took the entire morning. Dana Farber is an amazing hospital but the Jimmy Fund floor for pediatrics is very difficult for the tender hearted. So many children, so very sick. Some are as tall as Nick; some came in a stroller. Some can barely walk with assistance; some run as fast as they can to play with the toys. Some are crying; some politely tell their nurse "thank you" for their stickers.
Dr. Grier asked Nick what he thought his own prognosis is and what his expectations from him are for his treatment. Nick expressed his prognosis to be anywhere from 10 to 40%; Dr. Grier felt 40% was being generous. Nick hopes Dr. Grier will establish a treatment plan for his recurrence; Dr. Grier honestly admitted they don't know what to do. That being said, he discussed three different chemo combo options to choose from, all outpatient, all with similar toxicity levels (substantially less difficult that Nick's previous 16 rounds). After drawing on the paper liner used for the exam table, he and his PA decided to go ahead and throw in the kitchen sink, do all three options. In other words, let's attack the microscopic residual cells with all artillery we have left now, because if he relapses again on any one option, any additional treatment would be ineffective.
We discussed radiation again and although we still haven't confirmed anything with a radiation oncologist, Dr. Grier simply stated chemo will only prolong relapse, while radiation is Nick's only chance for a cure (remission). Well, when you say it like that...
Dr. Grier will be working with Dr. Gouw in setting up the specifics (this will involve EIGHT different chemos along with radiation thrown in there somewhere) for approximately eight to twelve months. All chemos, with the exception of vincristine, will be on the regular one week on, two weeks off schedule (he will receive vincristine once a week for four weeks straight).
Because Nick's spleen has been removed (the spleen is the bacteria filter for the body), if he EVER has a fever of 101 or higher, he has to go to ER for a blood culture and antibiotics immediately. We are all encouraged to get flu vaccinations. Although Nick is unhappy with the length of treatment, it should not stop him from having somewhat of a "normal" lifestyle, maybe including going back to school. It'll all depend upon how the chemo will make him feel.
Nick also has an irregular heartbeat; something we need to check up on when back in Utah (probable side effect from the "red devil"). I don't think he'll start up with treatment until the first week of September so he has a couple of weeks to have fun and enjoy his baby fine hair on his head (Dr. Grier paid him a quarter so he could rub his head - way funny!).
So that's it. The guessing game is continuing but it's a plan. We have asked Nick to rely on his own instinct as well, to listen closely to what his body tells him, and to consider looking at alternative and complimentary ideas, too.
We'll be home tomorrow night. Loads of gratitude to all for checking in on Nick!
With love,
Lori
Our appointment took the entire morning. Dana Farber is an amazing hospital but the Jimmy Fund floor for pediatrics is very difficult for the tender hearted. So many children, so very sick. Some are as tall as Nick; some came in a stroller. Some can barely walk with assistance; some run as fast as they can to play with the toys. Some are crying; some politely tell their nurse "thank you" for their stickers.
Dr. Grier asked Nick what he thought his own prognosis is and what his expectations from him are for his treatment. Nick expressed his prognosis to be anywhere from 10 to 40%; Dr. Grier felt 40% was being generous. Nick hopes Dr. Grier will establish a treatment plan for his recurrence; Dr. Grier honestly admitted they don't know what to do. That being said, he discussed three different chemo combo options to choose from, all outpatient, all with similar toxicity levels (substantially less difficult that Nick's previous 16 rounds). After drawing on the paper liner used for the exam table, he and his PA decided to go ahead and throw in the kitchen sink, do all three options. In other words, let's attack the microscopic residual cells with all artillery we have left now, because if he relapses again on any one option, any additional treatment would be ineffective.
We discussed radiation again and although we still haven't confirmed anything with a radiation oncologist, Dr. Grier simply stated chemo will only prolong relapse, while radiation is Nick's only chance for a cure (remission). Well, when you say it like that...
Dr. Grier will be working with Dr. Gouw in setting up the specifics (this will involve EIGHT different chemos along with radiation thrown in there somewhere) for approximately eight to twelve months. All chemos, with the exception of vincristine, will be on the regular one week on, two weeks off schedule (he will receive vincristine once a week for four weeks straight).
Because Nick's spleen has been removed (the spleen is the bacteria filter for the body), if he EVER has a fever of 101 or higher, he has to go to ER for a blood culture and antibiotics immediately. We are all encouraged to get flu vaccinations. Although Nick is unhappy with the length of treatment, it should not stop him from having somewhat of a "normal" lifestyle, maybe including going back to school. It'll all depend upon how the chemo will make him feel.
Nick also has an irregular heartbeat; something we need to check up on when back in Utah (probable side effect from the "red devil"). I don't think he'll start up with treatment until the first week of September so he has a couple of weeks to have fun and enjoy his baby fine hair on his head (Dr. Grier paid him a quarter so he could rub his head - way funny!).
So that's it. The guessing game is continuing but it's a plan. We have asked Nick to rely on his own instinct as well, to listen closely to what his body tells him, and to consider looking at alternative and complimentary ideas, too.
We'll be home tomorrow night. Loads of gratitude to all for checking in on Nick!
With love,
Lori
6 comments:
Homework, tests, classes, lousy lunches....all part of a 'normal' school lifestyle.
Cool things to look forward to.
Off to Summerfolk, where we'll say "Hi" to everyone from the Skinny Guy down south.
Lots of Love.
Jay
GO GET EM Nick!! You have been in my prayers constantly.
No spleen can be scary, but I have been ok for over 20 years now without mine. Although, certainly not dealing with the same things you are.
Lynda
Well Nick you now have somewhat of a plan and a few weeks to get in some serious fun!! Saw Colin this morning and he said any time you're ready give him a call and you have a place to stay (plus horses to ride!!!). The way you have handled your last 16 chemo sessions I'm confident that your upcoming rounds will be easier on your body. Its always difficult when you start hearing percentage statistics but you know you are my "Miracle Man". You should have charged Dr. Grier at least $1 to rub your head!!!!
Sending you love, light & angels
FG Jennie xxx
Now hold on a sec... all I've ever gotten for my spectacularly bald head has been a lot of people copping a quick feel.
I don't recall any return gropings, though, so maybe they netted a loss for their transgressions.
As always, YOU DA MAN!
Kurt
Still thinking of you guys. Hate that you ar facing this. Praying Nick will be cured.
Love,
Michelle (Diego's Mom)
Dearest Lori and family,
Life is an adventure - new friends (Super Size) - historic sites (Boston) new hope (Dr. Grier's plan) - lasting faith (God's grace). May the next eight months be filled with friends, fun vacations, successful treatments and God's healing hand. God's promise is an adventure worth living. Love, Aunt Chris
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