BALD on PURPOSE

10 short years

2011-12-30T17:02:00.000-08:00

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

2011-09-07T22:56:00.000-07:00

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

2010-01-10T21:25:00.000-08:00

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]

2009-09-21T19:26:00.000-07:00

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

2009-09-10T08:13:00.000-07:00

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!

2009-07-24T12:02:00.001-07:00

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...

2009-07-10T23:19:00.000-07:00

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!"

2009-07-10T10:41:00.000-07:00

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

2009-07-04T10:06:00.000-07:00

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

2009-07-02T09:05:00.000-07:00

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.

Confession time

2009-06-24T20:53:00.000-07:00

When I stand in front of the mirror, I pull my hair back and try to imagine myself bald. When I do my hair, I feel around on my head and try to imagine the scalp that I have only seen in baby pictures. And I have to confess, sometimes I think:

WHYYYYYY did I say I would shave my head?? What was I thinking?? Cut it off and donate it to make wigs? Sure. But, SHAVE it?? OFF?? People will stare. I'll have to explain, and they'll think I'm crazy. As my hair grows out, I'll have those horrible "in between" hair cuts. You know, in between "buzz cut" and "bob."

And then I remember. That's EXACTLY why I'm shaving it. To make a sacrifice. To make a statement. Granted, I'm not marching on Washington like Martin Luther King, Jr., or going on a hunger strike like Gandhi. But it's a sacrifice, still. And in the words, of Dr. King,

"When people get caught up with that which is right and they are willing to sacrifice for it, there is no stopping point short of victory."

It might be a little crazy, but as Orson Scott Card wrote, "We are, when the cause is sufficient, insane."

I'm impressed by the many of you who have donated to St. Jude already! Thanks to your donations, I have surpassed my goal of raising $1000! THANK YOU! I've now upped my goal to $2000, and we're only $600 away! I hope that in these next 10 days, we'll raise even more than that!

10 days. Wow. I'm sure that I'll get more nervous as the days tick away, but when I have my doubts, all I need to do is read these facts again. (Thanks to Jessica Randall's mom, Heide, for sharing them with me.)

So I'm shaving my head? Big whoop. In the big scheme of things, it's nothing. It's just hair. Now try explaining that to a child who's losing hers.

Childhood Cancer Facts
Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
One in every 330 children will develop cancer before the age of 19.
The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
One out of every five children diagnosed with cancer dies.
Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.
Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.
On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
On the average, one in every four elementary schools has a child with cancer.
On the average, every high school in America has two students who are a current or former cancer patient.
In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

"Those things which are precious are saved only by sacrifice."--
David Kenyon Webster

Kayla would be Connery's age...

2009-06-19T13:46:00.000-07:00

I just realized how strange it is to say that a child would be two, or would be starting kindergarten, or would be losing her front teeth right about now. But whenever I think of Kayla, I think of how she would be the same age as my younger son. They were born 15 days apart. Kayla was diagnosed with cancer before she even turned 4 months old. Here is her story, in her mother Julie's words:

I took Kayla to the pediatrician for a check-up just before she turned 4 months old – 3 days before Christmas. Her pediatrician was concerned with the size and feeling of her liver so she sent us for further testing. Within 12 hours Kayla had enough testing to confirm that she had Neuroblastoma, a cancer of the nervous system. A CT scan showed that she had tumors all throughout her abdomen, into her liver and spots on her spine. I still remember being in that room when the doctor said “cancer” and in the room when my husband received the phone call with the CT scan results. I remember dropping to our knees for fear of our child’s life. We didn’t even know what cancer truly meant much less that it could attack our daughter, an innocent baby girl. Our world was forever changed that dreadful day. Kayla was admitted the day after Christmas for a biopsy procedure – the first procedure of thousands to come. This procedure was unsuccessful and she was left with a bleeding disorder that would threaten to take her life on several occasions over the next few days. After several blood transfusions and impending organ failure, she was transferred from Colorado Springs to The Children’s Hospital in Denver. It was a true miracle that she survived the next two weeks with complicated emergency trips to the operating room and an immune system that would not defend her from even the smallest of infections. She was left on a ventilator for over a month leaving her bed ridden with no possibilities of holding her, feeding her or even giving her a bath – small treasures that no mother should be denied. She was finally released from the hospital after several weeks of rehabilitation and further treatment. We were home, but the battle had truly just begun. Kayla would continue to receive chemotherapy throughout the summer. It was in July when she started to exhibit worsening symptoms. A CT scan would show that our worst fear had become reality. Kayla’s tumors had spread drastically into her lungs, her neck, her pelvis, her bones and bone marrow. Kayla had become a Stage 4 cancer patient at only 10 months old. She was immediately placed on a high risk chemotherapy protocol which would include several rounds of chemotherapy followed by surgery, a very dangerous bone marrow transplant, radiation therapy, and several other treatments.

Kayla started in on her new treatment plan like the true soldier that she had become. She was fearless when it came to big dogs, scary noises, strangers in the crowds … it was the nurses, the needles, the tests, scans and procedures that would often bring her to tears. Kayla fought so hard, but her cancer was merciless and became too aggressive for her body to fight with the available treatment options. Even after several rounds of chemotherapy, the tumors continued to spread, getting closer and closer to her heart. The tumors were non responsive to chemotherapy and there were just no options left. I was forced to hold her in my arms and let her pass to Heaven on December 2, 2007, feeling her skin on my lips one last time.

After Kayla's death, her parents started the Kayla Weber Believe Foundation to carry on the fight against childhood cancer. The Foundation seeks to raise awareness and fund research.

She was diagnosed with cancer three days before her first--and her only--Christmas.

Her father shaved his head through St. Baldrick's and got a tattoo from Kat Von D on his chest, where Kayla used to lay.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I often think of Kayla while I watch Connery growing. And when I read that she had passed away, the first thing I wanted to do was hug Connery. Tight.

I. Can't. Imagine.

Evan, my favorite St. Jude Dude

2009-06-17T08:15:00.000-07:00

If it weren't for Evan, I probably wouldn't know much about childhood cancer. I might catch a St. Jude telethon on TV, or skim through an article in a magazine, but my life would pretty much be the same whether I knew much about childhood cancer or not. But now? I know a kid with cancer.

And he's an incredible kid. I love this video of Evan talking about St. Jude and singing one of the songs he wrote! Amazing, isn't he?

Evan's mother and I "go way back" ;) Back to the days when we wore our hair like this.
That's Melissa with the Cabbage Patch doll on her back (um, why, Mike??) and me in the center. See? My hair was so big it covered my whole face! Anyway...

We kept in touch after high school, and helped plan our 10 year reunion, but didn't get to see each other much other than that. Then, in 2006, she sent an email that just didn't even seem real. She was asking for prayers for her five-year-old son, because he had been diagnosed with cancer. I had the cliche'd "but this only happens to other people" moment. And realized what I already knew but had never had to really face: Kids get cancer, too.

Here's how Melissa tells Evan's story:

In the summer of 2006, Evan started showing early symptoms that something was wrong. He began to complain of pain in various areas of his body - his back, his legs, his arms, etc. He became very "crabby" and started sleeping a good deal. We ignored the symptoms at first, chalking them up to growing pains or attention seeking. Many times, the pains would conveniently come around the same time that we would ask him to do a chore or do something he didn't want to do. Throughout the summer, however, the pains became more consistent and worse. By mid-July, he was unable to get up from the floor without crawling over to furniture to pull himself up. He limped terribly and could not perform simple tasks. Alarmed, we visited our pediatrician.

After a blood test, they determined that he was severely anemic and was having muscle spasms. After several days of iron supplements and red meat, however, he did not seem to improve, but get worse. Fortunately, our pediatrician listened and scheduled scans at our local hospital. Immediately, during a bone scan, numerous tumors were found. By the end of the evening, Evan had been diagnosed with stage IV neuroblastoma, a cancer of the peripheral nervous system. Although this cancer is fairly common, it accounts for 15% of deaths from childhood cancer. The survival rate for this type of cancer is low - 30% over 5 years. We went home, heartbroken, searching for treatments that would best benefit our son. After a full night of research, we felt that St. Jude Children's Research Hospital in Memphis, TN would provide Evan the best care and the most innovative treatments in hopes of saving his life. After a referral from our pediatrician, we were in Memphis and in the care of the wonderful doctors and nurses in less than 48 hours of diagnosis.

Evan entered into a protocol consisting of two rounds of a clinical trial drug, then on to more extensive chemotherapies. He lost his hair, lost a lot of weight, and spent countless nights in the hospital. Evan had a surgery in October of 2006 to remove the primary tumor located in the the abdomen, however, resection was unsuccessful. Evan's tumor encased vital arteries that would have been even more detrimental to his health. He underwent nine rounds of what we called "the tough stuff", as well as a stem cell harvest, in hopes to enter a stem cell transplant, using his own cleaned stem cells.

We never made it to transplant. After the chemotherapy portion of his protocol was complete, we discovered that Evan's cancer had not budged. It was ALL still there. So, we went on for three more rounds of extensive chemotherapy. Again, we discovered, the cancer had not budged, but changed. Many of the cells that were pulled from his bone marrow had mutated to a benign form. This was encouraging, but doctors were not sure what to do with this information.

They did not feel that Evan would survive the disease, but because he was feeling well, they felt that a new clinical trial that had recently opened would be the best course of action. We began a new drug that would be administered once a week that was designed to kill the proteins that the cancer cells feed off of.

Two years later, we are still on the same drug. The drug does not make Evan sick. His hair has grown back, he has gained weight, grown taller, goes to school, participates in sports and other extracurricular activities and, except for a trip to St. Jude once a week for his doctor visit and chemotherapy, he is a normal, now eight year old boy.

It's incredible to see how much Evan has grown since his diagnosis. He has lived with cancer for THREE years. And we just pray for many, many, many, many more.

Don't forget to donate to St. Jude. Or run the 5k! Or go bald! Or all 3!

Donate online!

2009-06-15T00:48:00.001-07:00

So you know how in my first post, I said that my goal was to finish the 5k in 34 minutes? Well, a couple of days ago, I ran 5k in 34:40! :) It's the fastest I've run outside!

The best news, though, is that you can donate to St. Jude online by clicking here! My goal is to raise $1000! Please make your donation--even the smallest amounts add up!

If I run the 5k in 34 minutes, that's $29.41 per minute! Want to sponsor a minute? Two? Three?...

Several people have asked if I'm donating my hair, but unfortunately, it's not long enough. So why shave my head, you ask? Two reasons.

To bring attention to the cause of childhood cancer awareness.
To make a statement in support of children who lose their hair during chemotherapy.

So I'll be bald for a while. A little crazy? Maybe. But I'm okay with that. I've got hats.

Thanks for all your support! amy

yes.

start there, start with ‘yes’, the quick affirmation, the answer to a question that hasn’t been asked yet or is asked without pause. start with ‘yes’, i dare you; i really don’t care if you lower your eyes or you lift your chin to catch the light, if the word hurts or it heals or it just is. just start there.

yes, everything is beautiful. yes, everything hurts. somehow we’re on to ‘yes, everything...’ as though sweeping generalizations ever do anything but hurt. yes, i realize what i just said. i have nowhere to go after ‘everything’, nowhere i want to write myself to, but at least we started with ‘yes’.

yes, i believe that i'm too brittle, too brash, too much bluster and not enough holding steady. yes, i've forgotten what i look like. i closed my eyes for far too long and found out i was too good at it (pretending things don’t exist as a party trick: watch me watch you disappear), and now and now and now i can't remember if i'm tall or not, how my hair looks when i pull it up, how big my eyes are or what color.

it doesn’t matter how you say it anymore. a yes is a yes is a yes is a short step away from myself, a positive reaction and a lung working separately from the rest of the body. yes is what i’ve been waiting for, ears and teeth and knees. yes is exactly opposite to what i really need, but i take what i’m given in both hands and love it firmly, if not a little irresponsibly.

'yes, i remember...’ is subtle and terrible. magnificent and magnifying. yes, i remember every summer those mouthfuls of ocean water, salt in the cracks of my skin, motion in my bones. yes, i remember how good it feels, how honest to god good it feels to feel yourself taken into arms, into laughter. i remember how important it is to be able to answer, with eyes warmed smiling, with laughing in your teeth, the question 'do you remember?' with a round, smooth 'yes'.

'yes' like it could save your life, because, yes, it could.

--Jessica Randall

8/6/06 (3 months after diagnosis)

One of the reasons I'm doing this...

2009-06-09T21:27:00.000-07:00

Evan's mom, Melissa, keeps a fabulous caringbridge site to help keep everyone informed about Evan's treatment and all the fun stuff going on in their lives, too. Often, she includes links to other children's sites. And those parents include links to others, and so on. (I've listed some of those links in the left hand column.) So I'm not sure which site led me to "meet" Jessica Randall, but I'm so thankful that they did.

Jessica was 16 years old when she had an unexpected, terrifying grand mal seizure in April 2006. Soon afterwards, she was diagnosed with a brain tumor (anaplastic astrocytoma). Her mom Heide started a caringbridge site, and I followed it closely. Jessica reminded me instantly of my own students. She took countless pictures of herself in the mirror and wrote in a journal and loved her Myspace page and music and drawing and photography.

Jessica turned 17 on June 6, 2007 while she was home on Hospice care. Three days later, she passed away.

After her death, Heide slowly and carefully started reading some of her journal writings and posted some of them on the caringbridge site. Here is one of my favorites.

dear me,

don't let them sell your life back to you. squander nothing, make your own private monuments, disengage yourself from any love that's driven by fear or security or comfort. stop running after consolation prizes and talking about how bored you are or how disappointing you find other people. go after yourself and overcome inertia. rupture continuums and don't let the dust settle.

remember that there's always more than one truth and they don't always run in ascending order. shape yourself, taste rooftops, tear down the walls between the life you lead and the life you wish you led. chart frontiers, explore secret worlds, don't let your dreams only answer to the closest things, be the protagonist in your own epic grand tale. remember that there's nothing stoic about silence. understand that not everything comes at a price. be vocal, be vocal, be vocal. don't forget all the things thousands of miles away from you. don't live the life that's been prepared for you, don't stomach another hour of it.

act on the world that acts upon you and fight without borders or flags, because there's nothing left to lose control over and everything to gain.

--Jessica Randall

7/31/06

From blonde to BALD!

2009-06-08T20:05:00.000-07:00

That's exactly what happened to my little buddy Evan (shown here with his little brother). He lost his soft blonde hair after undergoing chemotherapy to treat his stage 4 high-risk neuroblastoma.

On July 10, I'll lose my hair, too, to raise awareness and raise money for childhood cancer.

My husband and I will run the 5k for St. Jude in Florence, AL on July 10 at 7pm. My goal is to finish in 34 minutes, but I'm not making promises about that ;)

I DO promise that after I cross the finish line, I will shave my head!

-------------------------------
In the weeks before the run, I will be accepting donations for St. Jude Children's Research Hospital, where Evan and many, many other children are being treated.

And in the days, weeks and months to follow, I hope that I can talk to friends, family and perfect strangers ('cause, ya know, I like to talk) about something that NEEDS to be talked about.

Kids get cancer, too.

To make a donation for St. Jude, please contact me at amysandy @ gmail.com.