10 short years

After watching Evan fight cancer for five years, Melissa wrote her shortest post to his Caringbridge site:

"Thursday, September 22, 2011 8:12 AM, CDT

This morning,at 6:40 am, our warrior, Evan, flew into Jesus arms. He is free."

...

It feels like there's a hole in the world now--exactly the size of a 10 year old boy. As a friend of mine wrote: "So sad to hear that he's gone. Glad he's not in any more pain, but very sad that more of the world will not get to meet him."

Godspeed, sweet Evan.

Trying to keep BeliEVAN

September is Childhood Cancer Awareness Month, and the little boy who brought me into the world of childhood cancer is fighting harder than ever to stay alive.

Everything Melissa posts breaks my heart into smaller and smaller pieces. Evan is "through with treatment," and he is home. His kidneys are starting to shut down. He is becoming less and less mobile and is feeling increased pain throughout his body. I've read similar words from other mothers, and the terrible truth is that they don't end well.

It's devastating. HE'S TEN. TEN YEARS OLD! He has battled this disease for HALF HIS LIFE. Melissa and Andy and the doctors and nurses have worked incredibly hard for five years to avoid--or at least postpone--what is happening now. But now it's really happening.

There have been times when it seemed Evan would beat the odds. In fact, just two months ago, Evan surpassed the five year mark. The survival rate for neuroblastoma is 30% over five years, and in my head, I always thought, "If Evan can just make it five years... c'mon, five years." Then what? Well, I don't know, but it had to be good, right? I know it defies logic, but still that five year mark was really significant. It had to mean that Evan could survive. Right?

When my husband Sandy and I visited Evan at St. Jude, I worried that I would have to fight back tears the entire time. But St. Jude is so bright and hopeful... I can't say that I forgot why I was there, but it certainly made me thankful that ST. JUDE IS THERE. It feels--I'm struggling to find the words here--like a party hospital. Laughter is good medicine, and so are hugs and toys and bright colors and art.

Evan walked us through the hallways proudly, introducing us to his doctors and nurses, freely giving hugs and high fives. As Evan sat getting his chemo, he played a video game, joked and sang for us. In the next room, a little girl received her LAST dose of chemo, and nurses and friends from around the floor surrounded her, threw confetti and celebrated her 'No Mo Chemo' day! I looked back at Evan, and for a moment I truly, honestly, believed--there in that hopeful place--that Evan would survive this. I had heard the statistics, and Melissa has never sugar-coated the slim survival rates. But still. I forgot about all that and just pictured this pretty blond haired boy as a grown up.


I can't wrap my head around this. I want the world to stop just long enough for me to figure out a way to fix this. To fix Evan so that he can celebrate No Mo Chemo, and his 11th birthday, and getting his drivers license, and his high school graduation, and his college fraternity bid, and the birth of his own child...

Evan has a little brother, Adam, who has never known life without Evan in it and probably doesn't remember Evan before cancer. And somehow he'll have to figure out how to manage. He will grieve in a way that we grown-ups can't understand. One day he will be older than his big brother ever was. That makes no sense!

None of it makes sense. Every day gets scarier, more fragile. Melissa has always said, "Keep BeliEVAN," and I'm trying, but where's that miracle??



That day at St. Jude, when Evan sang for us, I watched him and thought, 'This is an incredible kid. And I'll never hear this song the same way again.'

...I keep waitin', waitin'
waitin' on the world to change...

46 Moms Shave for the Brave

I haven't posted since September. Because every time I sat down to post, I knew I would have to update about sweet Jessica Easley, the 10 year old who battled cancer, lost her hair and her leg, and picked out special good bye gifts for her parents and sister.

The 10 year old who passed away the day before she turned 11.

I just didn't want to have to type that. Ugh. I don't even know what to say, because everything I think of sounds wrong. She was YOUNG. She was full of SPIRIT. So, it doesn't make sense that she's gone.

At Jessica's funeral, she wore a pink tie-dyed shirt with a peace sign on it and took a final ride on a motorcycle. Her last word was her request for the kind of cake she wanted for her birthday: 'Chocolate.'

-------------------------------------------

So I've dreaded this post, not wanting to have to type that. I've been in a 'slump' over posting to the site, but last week, two positive events gave me some hope again.

Sweet Evan went through his quarterly scans, and the results were STABLE!! No progression of disease! Every 12 weeks, he goes through scans--which are painful and tiring, bless his heart--and we pray for good results. The best results would be that the cancer has shrunk! Or disappeared, even! But at the very least, we just pray that the cancer is STABLE, not growing. As long as he gets stable results, he can continue on the chemotherapy protocol he is on, and life can get back to 'normal' at least until the next scans. Evan has lived with cancer for 3 1/2 years, and each stable scan is a blessing. As Melissa says, we keep Beli'evan'!

And a few days ago, I read the Caringbridge site for Jessica Randall, the first Jessica I 'met'. She, like Jessica Easley, passed away near her birthday, and I've been incredibly inspired by her writings and photography--her life, really, as short as it was. Well, her fabulous mother Heide announced that she and 45 cancer moms are going to SHAVE THEIR HEADS! :) You know me, I'm a big fan of that. haha.

They're calling the event "46 Mommas Shave for the Brave" to recognize that on average, 46 children are diagnosed with cancer every day. EVERY DAY! So they represent just one DAY's worth of mothers who are told "Your child has cancer." Heide and the 45 other mommas will 'go bald' in September, Childhood Cancer Awareness Month. To help Heide raise money for childhood cancer research, you can donate directly at https://www.stbaldricks.org/participants/heiderandall

You know, I heard Melissa refer to St. Jude as "The Jude." I told her it sounded like a club. she laughed and said, "Yeah, a club you don't want to be a member of."

Three children. Three momma's. And just today, 43 other momma's joined their club.

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----------------------

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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."