Wednesday, June 24, 2009

Confession time

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

    Friday, June 19, 2009

    Kayla would be Connery's age...

    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.

    Wednesday, June 17, 2009

    Evan, my favorite St. Jude Dude

    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!

    Monday, June 15, 2009

    Donate online!

    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


    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)

    Tuesday, June 9, 2009

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

    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