Mome reads Mommy, My daughter's way to spell it when she was younger... It stuck. My son calls me Mome... just like it looks. I now sign all my notes to them "Love, Mome". It's our inside secret and makes them smile. I always want them to smile.

Saturday, July 12, 2008

St. Jude

St. Judes is a wonderful hospital that fully treats patients without expecting payment, or at least not more than the family can pay. It costs over 1 million dollars a day to run the facility. Please read Vivian's story and figure out what you can do to help. A prayer, or a kind thought. would go a long way.
Girl, interrupted(copied from the St.Jude website)
Within moments of meeting 13-year-old St. Jude patient Vivian Laws, you’re struck by how determined she is. She doesn’t get grossed out at the sometimes gory medical procedures designed to cure her osteosarcoma, a type of bone cancer. She even jokes about her scab collection, wresting humor from pathos.
But she does have one fear that may surprise you: Forgetting. She wants to remember every bit of her cancer recovery, even the bad stuff.
“People say to me, ‘Believe it or not, you’re not going to remember all of this pain,’” said Vivian. “I’ll be like, ‘Ah, I find that hard to believe,’ but really when you think about it, sometimes things get lost and you don’t remember them.”
She keeps a scrapbook to nudge her memory.
“After I was diagnosed with osteosarcoma, I said, ‘It might be a good idea for me to do a scrapbook because I have a bunch of pictures and everything, and when I grow up, I’ll want to remember this time.’ So my mom got the scrapbook.”
The book gets thicker by the week.
When creating a scrapbook of your battle against cancer, where on earth do you start? Vivian chose the period right before she got her diagnosis, when the cancer was growing in her leg, only she didn’t know it yet.
One page spread is devoted to photos of family vacations from the weeks before her diagnosis. Whether she’s riding a horse or clowning with her two brothers and two sisters, she wears a huge grin. She points to a photo that shows her riding on a roller coaster. “My eyes were closed on this ride the whole time,” said Vivian, “but if I had it to do over again, I would have them open. I want to tell myself, ‘You need to see everything.’” Looking at these photos now, Vivian feels something akin to a sixth sense.
“I look at my leg in these pictures, and I’m like, ‘I know what’s brewing in there,’” said Vivian.
One page is titled, “Hair today, gone tomorrow,” in colorful font. The page chronicles Vivian’s hair loss after she started chemotherapy. It includes photos of Vivian with long auburn hair from her modeling days, as well as photos of Vivian with a mid-length bob, her in-between style as she worked up the courage to get a buzz cut.
“The day after I got it cut into a bob, I was losing my hair fast,” said Vivian. “The whole middle part was practically bald, but the sides were still long. It looked like a backwards Mohawk. The hair had to go. So the next day, I got it buzzed.”
She runs her fingers over the scrapbook page – over the photo of her wearing a wig, and over the photo that shows her bald, like she looks today.
“I can actually remember what every picture is and what I’m doing,” said Vivian. “Scrapbooks help you remember things you might otherwise forget.”
Her journey with cancer hasn’t always been easy. Her first chemotherapy treatment left her with hot flashes. She hurt so bad, she screamed that her head felt like it was on fire.
“I’d like to go back in time to when this picture was taken and hug myself and say, ‘It’s OK. You’re going to be OK,’” said Vivian.
Vivian draws strength from her family. After all, it was her mother who assured her she would still look feminine, even after she lost her hair. It was her sister who lay with her in the hospital bed and hugged her tight during Vivian’s first round of chemotherapy. In the photo, Vivian looks happy, but so tired.
After months of chemotherapy, Vivian had her limb-sparing procedure. The chunk of bone with the tumor was cut out and replaced with a metal rod. She still walks with a brace, and the scab that formed over the wound from the procedure is so large that removing it will require its own separate surgery. The continuing chemotherapy and physical therapy have been grueling, but she’s doing well.
Vivian flips the page in her scrapbook and points to a series of pictures. “This is my wound care nurse at St. Jude,” said Vivian. “She’s awesome. She does everything. This is her taking out the drain that was in my leg. It went down really far. This picture was taken at the beginning of the procedure, and you can see how my face changes in each shot – inch by inch. This is me finally when she’s through. Look how relieved I look.”
Many of the scrapbook pages have themes, like the one that shows her baby pictures, the one that displays the first get-well cards she received from family and friends, and the one devoted to autographs from some of the hospital’s famous visitors, like Miley Cyrus. “I got to spend time with Miley in the Teen Room,” said Vivian. “My picture of her with her autograph is my prized possession.”
Other pages are more of a hodge podge, befitting a life jam-packed with activity.
“That’s me when I won Miss Photogenic or something,” said Vivian, explaining the different pictures that share this particular page. “That’s me practicing for a lip synching contest. That’s me at a family reunion, and I found a snake, and I was like, ‘Look at this snake!’ And they were like, ‘Ah!’”
Staying upbeat can be tough when you have cancer. Vivian’s choice to be positive is just that: a choice. She takes a disciplined approach to her own recovery. She keeps up with the physical therapy, sure, but she works equally hard to keep her head on straight. Maintaining her scrapbook helps. It reminds her of the good times, her accomplishments and just how far she’s come.
“You want to remember where you were and the progress you made,” said Vivian. “The scrapbook can show you how far you’ve gotten. My kids will know what St. Jude looks like and where their mom’s second home was.”
And that’s what’s so great about Vivian’s scrapbook: It catalogs a rich past, but at the same time, it’s filled with so much hope for the future.
Vivian has had fun today, but now it’s time to go, and she waves goodbye and heads outside with her dad. After all, this girl’s got places to go and people to see, and a whole full life to lead.

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