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Day 247: Good News Bad News

Tuesday, May 13, 2008 - Madeline will attend the Hole in the Wall Camp in June in one of the earlier sessions. The time coincides with her eighth grade celebration night, and we have been given permission to pull her out of camp for the night in question. She is very excited, as are we all. And ... Madeline does show classic signs of osteonecrosis in her tibia bones (large bones on the lower part of the leg) from the dexamethasone. This changes her protocol temporarily to exclude that drug during maintenance (5x per month) for the next few months until her bones show signs of recovery.

We are all doing very well right now. Everyone seems particularly positive, perhaps it's spring in full force in New England, the bowers of flowering trees leaving all shades of pink on the ground, rhodie's and azaleas getting ready to burst; perhaps its the nightly round of 4 square, played with great enthusiasm at our home, Buttercup not quite understanding the rules; or perhaps it's the end of Madeline's most difficult months of treatment. Whatever the cause, we are having some much appreciated good weeks. Madeline made potato soup last night, bouillabaisse tonight, both delicious, and we made it to Crane's Beach for Mothers day.

11 comments:

Anonymous said...

GREAT about the camp. I was thinking of you on Sunday, as well as the 1st of every month.

Love you-a

Anonymous said...

WHOO HOO!

With the exception of the tibea thing, this all sounds great!!!

A few weeks in the HOle in teh wall camp! Springtime blooming all over the place!!! 4 square in the drive way with a rabid dog! !!

What more could you ask for?

All the flowers are starting to fade here in NYC. On some blocks, when the wind blows, it looks like it is snowing from all the pedals falling off the trees!

Its great to see this upbeat update!!

Anonymous said...

Awesome blog post. Love the video, but next time want to see all 4 of you out there - maybe have Buttercup do the video? I totally agree about the blooming spring. Congrats about camp. More soon, Juliet

Kathy said...

I love this part:

"...it's the end of Madeline's most difficult months of treatment."

What a wonderful phrase! And it's Spring too! Perfect.

Greetings to all of you (and dog)
xoxo David and Kathy

Anonymous said...

We are overjoyed re Hole In The Wall camp! Trust that everything will be alright on that leg. Bless you and oodles of Love!XXXXOOOOGP&E

Unknown said...

hi chris,

i'm thinking about you guys all the time. it's good that m's bones can recover, but if only they could have avoided that side effect in the first place. being on a protocol is a very selfless thing to do. i know it's hard. i feel so strongly that you-all will be where we are some day, and it will all seem like a horrible nightmare. in 2009 it will be ten years since james was diagnosed.

remember the first night we went to the bargain movies in belmont, to see 'whatever was playing' and it was that movie about lesbian experimentation?! ah, yeah, we're just friends, no really, we're married, no, to like, men, uh, with kids and stuff, no we just like to get out a little, well no, i don't mean like out, but y'know, i guess more like GO out, well, that is not, like dating, i mean...

love devon

Anonymous said...

Enjoy camp Mady! Cant wait to hear all about it.

I loved the clip of you guys playing 4 square and adore your little doggy.

Take care xxx

Anonymous said...

WE LOVE YOU! Nice video of the 4 square game. And really wonderful news about Mimi going to the hole-in-the-wall camp!! I'll be praying that her legs get better, too!
*Am thinking about you all many times throughout my days. Love, J

Anonymous said...

Hi Maddy, we wish you a great time at camp. Sorry I haven't written for a while, but I always check in on you. We have been busy with our schedule of appt's. Looking forward to a report on your camp experience. What a great picture of you, your Mom and sister. Love and Blessings. Fans from Fl. Lad and Bev

Kim Kiner said...

Mady and Family,

We think of you often and are glad things are looking up a bit. I remember the leg/bone pain from my chemo and it was the worst of it all, since the femar bones are so big. . . it will pass, with luck and time, and you'll be stronger than ever.

Have a terrific time at Camp--we've heard such wonderful things about the HTW camp and know several people who've worked there--should be just fabulous and a great reason to come visit our fair state--now don't go liking it more than Family Camp, however!

Take care and we'll call again soon. Hang in there and keep piling up all the "good days!"

"Live, Love and Laugh,"

Kim, Bob, Sammee and Kasey Mazzone

Anonymous said...

Glad to hear the most intensive phase is over - great pics of all of you - Julia is getting so tall!! Hope we can see you all sometime soon!! Love to all - Aunt Misty and Madison