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Day 9: Tuesday Afternoon

Tuesday, September 18, 2007 - It's 2:30 pm, and I am sitting here on Madeline's bed. The view from her room is spectacular with views from Boston Harbor to the Hancock Tower and a bit of the Charles River and sometimes it does bring solace and wonder even amidst the unbelievable pain and shock of the cancer diagnosis. It really is unbelievable. How could this happen? Madeline is wondering "why me?" Two weeks ago we are talking about shopping for fall clothes, and now we are shopping for a wig. The immediacy of the diagnosis required that we all take a nosedive into the cancer battle and yet we are at the same time in disbelief and shock.

Today has been a particularly difficult day but it seems to be quieting down nicely. Madeline had her haircut this morning since she will lose her hair over the next few weeks and having short hair makes it seem less painful (friends who have lost their hair suggested this and Mady gave the OK). She looks adorable. She then proceeded to almost pass out while getting ready to take a shower, necessitating some bed rest, more IV fluids, blood and unfortunately, missing an opportune chance to change her clothes. She is temporarily on insulin, a side effect of one of the steroids, so they have to check her blood and then remedy it, both with pricks, facilitating quite a bit of empathy for people with diabetes. She has to take a plethora of pills, have daily shots and chemo. She doesn't want to do it, but she knows this is the only door out. She doesn't want to have cancer, and everyone can empathize with that sentiment. The worst parts are the chemo, shots and changing the dressing for her port.

The IV nurse today reminded me of the principal in the story Matilda, as she ripped away the dressing to Mady's scream of "Can't you be more gentle?" Mady is devising some coping mechanisms, however, to the number of people who come in to meet, poke or prod her. Yesterday, when 2 doctors came in and sat bed-side waiting for her to wake up, she slept and the minute they left she sat up and said "Oh good, their gone, I can go to the bathroom." Today, she simply asked the few not required to come back another time. Everyone wants her to feel OK with what's going on. Everyone seems worried about her feelings of sadness surrounding her diagnosis. We are all overwhelmed at the long road in front of us but I bet for her, the long road seems endless right now. I guess I think she is doing just fine considering.

Please allow her to be sad. Don't make her tell you the positive parts of her stay here. They exist. On the whole, we feel coddled and well cared for, but allow her the time to adjust to a new paradigm within her world that includes cancer. As she said today "I knew of people who had cancer, and I never thought it would be me." love, Chris

8 comments:

XCW said...

Dear Mady, Chris, Trey and Julia,
An old Chinese saying goes like this, if you survive a big disaster in life, your future is for sure filled with happiness and bless. "Da Nan Bu Si, Bi You Hou Fu". 大难不死,必有后福。
I know this will be true for Mady! Hang in there... Things are at their worst right now and can only get better from here.
Best,
Cindy

Lilli Smith said...

I just read every word. Thank you for starting this blog. Mady is blessed to have such a wonderful family and you all will be critical to helping her beat this. Details like the horrors of subcutaneous Asparaginase and the miss-matching colors of the telemetry wires will give everyone more insight into what you are going through day to day and allow our prayers and thoughts to be more specific. Cry, cry... being diagnosed with Leukemia at 13 is completely unfair….to all of you. Many big hugs and much love to room 1816. Lilli

Kathy said...

I loved this post the best. There are no "good" or "bad" feelings, only true ones. And you learn the most when you remain true.

I have a quote to share too. I've been thinking about it over the last year.....

"What is, is. If you understand, things are just as they are. If you don't understand, things are just as they are."

Thanks for the blog.
Kathy

Anonymous said...

You all shine through with every word of this blog - thank you. What a wonderful family you are. I think about Mady every day, with love and good wishes. xxxoooo Laura

Anonymous said...

Hi Mady,Julia, Chris and Trey..
Am happy for you that you have such a wonderful family and loved one's around you to help get through all this misery that's hanging around you (not for long though). I know personally how critical it is right now that all the family and friends you have are there for all of you but especially you Mady.I know that God will make a way where their seems to be no way coz he works in ways we cannot tell....(quote from a song).I believe there is always a time of sadnes and happiness in our lives and you are going through your sad one right now, this is why I believe if more than ever, that you will get better in no time and catch on the next shopping for fall that you have missed out on this time.
You are in my prayers to get better and for the family to be even stronger.I would say you are very blessed to have a wonderful family so close with you and your family is also blessed to have you as a sister and daugther. Be strong and have FAITH and all will be over sooner than we think.....
Many blessings to you and the rest of the family....
Lots of love and hugs from.........
a Friend who will keep you in her prayers everyday!!

Anonymous said...

Hi Mady, Julia, Trey and Chris,

Your last post says it best. Cancer SUCKS! (Sorry for the bluntness, but hey, it's the truth!)

Mady, you do what you've got to do! Whatever comes up, let it out, kiddo.

When you get to a point where you're in the mood for some cheering up, let me know and I'll share some fun stories of the various ways Matt Corsetti and I tried to dump your dad off his waterskis!

Hang in there!
Mary

Anonymous said...

Dear Mady, Chris, Trey & Julia,
My daughter Lilli, who works with Trey, sent me your link. As you know, she was diagnosed with Hodgkins lymphoma a year ago at the age of 35. Even with the age and diagnosis differences, I feel that I know what you're going through and my heart goes out to you. I wished that it had been me, instead of her. This blog and the support it will generate will help a lot.
As I teach piano students the ages of Mady and Julia in Arlington, VA, I will be thinking of your lovely family and praying that all goes well. There will be many ups and downs, but I predict that when the treatments are over, as they are now for Lilli, that you will all be stronger and deeper.
Music helped Lilli get through some of the dreariest treatments. I look forward to hearing what kind of music Mady likes.
Much love from a veteran mother,
Martha Smith

Kim Kiner said...

Dear Mady, Chris, Trey & Julia,

As I poured over every word on this blog, the memories of my own journey with cancer (almost 4 years ago) all came rushing back. . . the fear of the unknown, the pain, the emotion and the "gift" of perspective. My entire family's lives have changed forever since my diagnosis, and believe it or not, it wasn't ALL for the worst! While you will get through all of the nasty and horrible treatments, you will also find that the way you look at your life and the world will be different in a way you could never imagine, and it WILL be for the better. While I will be praying for your successful and speedy recovery, I will also be praying that you learn how to "Live, Love and Laugh" like you never have before!

From what I have learned about you all as a family over the past two summers at Camp Lawrence, you have the makings of true "survivors," and your journey on the survivor trail started the day of Mady's diagnosis. . . you CAN survive and beat this and I know you will come out stronger in the end!

That being said, we are also hoping that you find a peaceful place to be during this horrible ordeal, and remember to hang on to each other AND your family and friends for strength and help through the journey. . . and don't worry about figuring out how people can help--they just will.

Our prayers for healing and peace are with you and we will be in touch with a helping hand soon.

LiveStronger every day,

Kim, Bob, Sammee & Kasey Mazzone