Jessica [and Elvis]

I've mentioned before that the 'virtual' connection between cancer families is pretty strong. It's through their caringbridge sites or carepages that they can share information with families and with each other, even after some of them lose their children to cancer. Heide--Jessica Randall's mom--shared the story of another Jessica who's 10 now. --A younger Jessica who has fought cancer for three years now. Clearly she has the same--dare I say--SPUNK? as the older one.--

Jessica was 7 when she found a bump on her right leg in early 2006, and thus began the roller coaster of a journey. That bump turned out to be alveolar rhabdomyosarcoma, a rare soft tissue cancer. Over the next few months, she underwent chemotherapy and had her leg amputated. She named her prosthesis 'Elvis' if that tells you anything about her spirit :)
-On Valentines Day of 2007, she was told that her cancer was in remission, but relapsed a year later, this time in one of her lungs and multiple sites in her neck and back. In April of 2008, she started chemotherapy and radiation again, knowing that a relapse of her cancer has an extremely poor prognosis.
-In December, she was told that she had achieved a SECOND remission, but they knew that a second remission is often followed by a second relapse.

--One month ago, they discovered the cancer was back, this time in both lungs, her lymph nodes, spine and around her aorta. She came home on 9/9/09 on hospice and has been in severe pain every day.

She has asked her mother to burn her diaries so no one will read them, slept with her phone under her pillow waiting for a phone call from 'The Hag' (Merle Haggard), and told her mother that when she gets to heaven, she will plant a money tree in the backyard. She has written her own will and made special requests for her memorial service--her celebration of life.

And her mother says that she does stuff like this...

Then, at bedtime, she whispered something to Dan. I had my pallet ready for bed on the floor next to Jessica's hospital bed. Then Dan came over, gave me a kiss, a huge hug, and said I love you. I said what are you doing? We've been married 4 years, that ritual stopped a long time ago (LOL). He said jessica asked him to do it. I think Jessica is trying to be sure we are strong TOGETHER, that we can move ahead with her gone. She is doing a lot of these little things, trying to bring everybody closer and making sure we will be okay.

We have told her bunches that we will let her go, when it is time to let her go, not to be afraid of what cmes after, but to take care of her; that we love her, and she needs to do whatever it is that she needs to do. She is so strong...she is not supposed to be taking care of us, yet in her hospital bed she seems to be the one in charge, the one who is the wiser and stronger, and the one taking care of everybody who enters our home.

Jessica is so beautiful.

Jessica is a reminder, especially here during Childhood Cancer Awareness Month, of how devastating this disease is. And how amazing the children fighting it are.

[A video created from photos by her friend Michell Ruff, just a few days ago. I don't think I'll ever forget the photo of her hands--a different color polish on each nail.]

[Another video of Jessica with her beloved Leeroy. Recorded two days before her family took her to the ER and discovered the cancer was back.]

Update: My cousin went to "The Hag's" website and found that they've asked for prayer requests for Jessica on the front page. Very touching.


Also, Jessica's mother has put together a cookbook including Jess' story, special moments and pictues of many children who are fighting cancer. Each recipe is in honor of a special cancer warrior! Print the following order form and send it along with $24 (including shipping).

MAKING MEMORIES WITH JESSICA
Cooking with Hope
314 Teal Trail
Shirley, AR 72153
-----------------------------
Please send me ____ copies of Making Memories with Jessica at $20.00 per copy and $4.00 for shipping and handling per book. Enclosed is my check or money order for $__________. Write checks to MMWJ.
Mail books to: _______________________________
Address ____________________________________
City _______________ State _____ Zip __________
Additional sum/donation in the amount of $_______ (check box below)
_____for CureSearch in Jessica’s name/honor
_____for Jessica’s toy closet drive for ACH Heme/Onc Unit----------------------

-------------------------------------
They are also collecting soda can tabs for the Ronald McDonald House. Please help them by collecting tabs and sending them to the above address.

September

SEPTEMBER 10! Wow, 2 months since I 'went bald'. And in that time, our fundraising level has risen to OVER $6000!!! It's just incredible. Far beyond what I had hoped.

My hair has grown back really fast and I joke that it's 'starting to look like a real haircut' now. You know, a real haircut, instead of 'the chia-head that grows after you completely shave your head.' I've had it trimmed up once, more so that I could show Jonathan how much it's grown. He's got some fun ideas for styles as it grows out, so stay tuned :)

Here's the progress so far. Set to music by the amazing Annie Lennox. 'Cause she's amazing, and because as many comparisons as I've gotten--Sinead O'Connor, Agatha the PreCog in Minority Report, Edie Falco--Annie Lennox is my favorite ;)




[Most pictures were taken about a week apart, but I won't swear to that. I wasn't good about taking a picture every day.]

September is Childhood Cancer Awareness Month.

This Saturday, on the second annual Childhood Cancer Awareness Day, I hope you'll wear a gold ribbon in honor of one of the many, many children fighting cancer. Or in memory of the many, many who have died from it.

And on September 28, join me at Chili's--a tremendous supporter of St. Jude--when they will donate 100% of profits ALL day to St. Jude. Any Chili's. Any time that day. www.createapepper.com/

It'll be like a date! :)

The hair is growing, and so are the donations! Evan's cancer is NOT!

I haven't posted since the head shaving, but I promise I will soon! The hair is growing faster than I anticipated. Here's a photo for now.

I'm overwhelmed by how generous everyone has been! We've raise over $5000!!!! All for St. Jude! It's far beyond what I anticipated when I first decided to go this journey. I thought, "Wouldn't it be cool to raise a $1000?" Now we're shooting for $6000!! To donate, click on the Donate to St. Jude link on the left.

And I'm happy to share that Evan had scans this week, and they came back STABLE! Which means no growth since the last scans. So he stays on his current chemo once a week and is scheduled for scans again in 12 weeks. Read Melissa's update at www.caringbridge.org/visit/evanthomason

And then there was none...

Sandy and Eleana, our niece both finished the 5k around 30 or 32 minutes...(I'll find out the exact times soon) which just amazes me. In the time it takes to watch a sitcom and maybe grab a drink, THEY ran 3.1 miles. Wow.

Me? 35:19. My goal was 34, but I'm not disappointed. I'm glad I finished. And having my two boys cheering, "Go Mom-my! Go Mom-my! Go Mom-my!" Well, that's what I'll remember about crossing the finish line. Not the digital number that shined by my head.

But you know what's fabulous about that number 35:19?? We've raise more than $3519! My 5k time is SMALLER than the amount of money we raised by running it. And the donations are still coming in online and in checks! I can't tell you how YOU have exceeded all my expectations!! It makes me incredibly proud...

And now, the moment of truth. The head shaving. It meant so much to have the boys there, along with my Momma, my best-best friend and her mom and daughter, a good friend of mine from work, and a former student and her boyfriend. And my hairdresser? I've decided that for the next few months, since I won't need hair cuts, I'll make appts. and go to coffee with him. Because I love him.

Here, Alison, the 5k coordinator introduces us to the everyone and lets us explain why we're going bald. [I had a great speech written out. And left it in the car. It had some great stuff by Melissa and Evan. Duh. As it turned out, I just tried to make sense.]

Here Jonathan lets Sandy take the first cut, then my 4yo, then my mother. Then...there's no turning back! And the crying? Well, I was fine except that I looked up and the camera-girl (my former student) was crying. I blame her. At one point, Jonathan asks, "Are you okay, baby?" And all I could think to say was, "It's not the hair..." It's Evan and Jessica and Kayla and David and Hunter and Rayley and.... and.... and....

Here I get the first look at it. And I LOVE it! Makes me feel like a real rocker chick. :)

Here Sandy takes his turn. [I joked that he'd better not back out...] I'm proud that he did this with me. It's one thing to support your crazy wife when she says she wants to shave her head. It's another to JOIN her.

Thank YOU for joining us, too. And the road's not over. The donations are still coming in. Because the children are still fighting this cruel disease.

As the banner hanging over the registration table read: "No child should have to die in the dawn of life."

"Tonight's the night!"

Over a year ago, I read about a dad who shaved his head in memory of his daughter. I remember casually mentioning to a few students that I wanted to shave my head, too. Sort of a test run. Just to see how they would react. And I heard, "I'll pay you NOT to shave your head!"

I guess they thought that would sway me against it. But it actually convinced me that I HAD to do it. People react when women shave their heads.

And now? In less than 12 hours, I'll be bald. My husband, 14yo niece, friends and even my hairdresser are running in the 5k. My husband is going to shave his head with me!! (Think it's not a big deal for a man to shave his head? You don't know Sandy. :)

And in the past month, we have raised over $3000 for St. Jude. That's more than triple my original goal! I'm blown away by everyone's generosity!! A high school friend just cut 17" off her hair to donate to Locks of Love to make wigs for children undergoing chemotherapy. And The Huntsville Times printed an article this morning which will reach beyond our circle of [amazing] family and friends.

So why are we doing this? Well, no one can tell you why St. Jude's is incredible better than a cancer parent.

No one ever thinks that their child will be the one- the one diagnosed with an illness that could take their life before it has begun. In our busy lives, we don't often pause and think about how life, as we know it, can change with one ugly word-cancer. Noone is ever fully prepared to watch their child get stuck with needles or have to stick them themselves or intentionally have poison put in their child's body or watch their child lose their hair or sit in a hospital for days upon days. We weren't. But in those moments, those awful moments...

We had St. Jude. The doctors and nurses gave us hope. They made us feel as comfortable as we could. Everyone went out of their way to make sure that our whole family was provided for- housing, food, transportation, prescriptions, school, and, most importantly, medical care were taken care of for us. Our main concern was our child's health, as it should be. And a bill? We have never seen one. What our insurance doesn't pay, st. Jude covers. And that's not all. These doctors and nurses became our family. The other families became our family. These people really love their jobs and they love these kids. Not only are they treating our kids but they are working tirelessly to find the cure. In the words of our son's doctor, Dr. Wayne Furman, "I look forward to the day that I am called and told not to come to work. A cure has been found." St. Jude has provided life for our son and hope for us and many, many others.--Melissa Thomason

I might cry tonight. 'Cause that's what I do. [I come by it honest. My mom called me this morning after reading the Huntsville Times article...crying. LOVE that woman.] And I won't deny that some of the tears might be because I hate the way I look. But that's not why I'm tearing up now. Those tears are for the children who fight this terrible disease. And some of them die from it. Some of them lose their hair and NEVER grow it back, because they don't survive. And there are SO, SO many of them.

I've posted about some of them, and I'll continue to post about more. And a lot of those posts will be about Evan. Okay, now I'm crying already... I'll have to write more about him another day. But for now? Suffice it to say, every "cancer child" is a reason to support St. Jude.

But Evan? Evan is my first reason. I love you, buddy.

3 Days to Bald...and Isa's story

In 3 days, I will go bald! And the hubs is joining me!!

3 days. And I know they'll fly by as I hurry to
-raise a few more hundred dollars,
-get interviewed for the Huntsville Times,
-take some cool photos with a friend of mine,
-train for the 5k
-coordinate who is running with us (CCW, SarahLena, JohnMichael...anyone else??)
and who is shaving their heads (Me, Sandy...anyone else??)
-prep my boys so they won't freak out when Momma and Daddy BOTH shave their heads!

And while I'm doing all that, I'm taking the 4yo to swim lessons, keeping the house super clean for prospective buyers, planning fun stuff to do with our niece while she visits next week, learning lines and choreography for Urinetown: the Musical, going to rehearsals, doing laundry, yadda yadda yadda...

But you know what's NOT on there?
Taking one of my children to chemotherapy.

That puts everything into perspective...

I recently discovered a blog in which a mother describes that day with moving detail and photographs. The title of the post?

Long Days

But what rings through her head during those days is the advice a stranger on a restaurant patio once gave her after watching her juggle her three children, dinner and conversation with her husband.

The days are long, but the years are short.

It's something that I think every parent tries to remember. Hold on to every little moment, because these babies grow fast. As my best friend says, "Children have a nasty habit of growing up." Oh, yes, and they do it when you're not looking.

But a parent whose child is sick? A parent who fears JUST how short the years may be? ...

Excuse me while I go hug my boys even tighter.

Bald is Beautiful: Kennedy's Story

It's a common phrase, and there are so many men and women who prove it to be true. Here are just a few of the women who show us that beauty doesn't depend on the haircut. Or the hair at all, for that matter.

Noemie Lenoir

Natalie Portman

Demi Moore

Melissa Etheridge
Alek Wek

Even Miss Virginia knows Bald is Beautiful.
She got special permission from pageant officials to shave her head through St. Baldrick's if she raised $500,000. Her original deadline was April 11, and she didn't reach it but says that she will continue to fundraise and will shave her head when her reign is over.

Kennedy

She's the youngest in this group, and she took the Bald is Beautiful saying to heart and CHOSE to be bald before the chemotherapy forced her to. As her hair started falling out in clumps in June 2007, Kennedy shaved her long red hair completely. Her mother, Stacy, shaved her head at the same time so that Kennedy wouldn't be alone.

Kennedy struggled for over a year from Osteosarcoma, a bone cancer that resulted in the removal of three of her ribs. She is often called the Princess Warrior.

Kennedy was declared NED--No Evidence of Disease--in July of 2008, is growing her bright red hair back, and continues to fight for childhood cancer awareness.