Monthly Archives: February 2011

Yard Sale

I want to go to BlogHer. But since tickets are like a kagillion dollars, I’m having a yard sale. I hate yard sales, they are way too much work, and you have to get up early. Two things I desperately hate, along with leukemia and chemo. I don’t like to haggle for shit, I say $1- you say ten cents sold to you because I don’t want to have to haul this crap back into the house with me.

The only highlight to me having to go though all my old junk is the Barbies. I had hundreds of Barbies and thousands of outfits for them, ***sigh*** I remember playing Barbies for hours on end, dressing them, cutting their hair, painting Kens feet black to look like he wore flip flops…memories…

Today was a very special day in the Kens house hold. In celebration of their adoption of Simone, they decided to take a new family portrait with the twins Celeste and Monet. Maybe I will keep these ones…

Meet the Kens! That’s Sven on the left and Freedrik on the right, their twin girls Celeste and Monet and the newest addition Simone. They are Austrian Olympic bronze medalists in the sport of curling; who live full-time in Croatia.

Please come to my yard sale, otherwise I may have to take the Kens family home with me. And those guys are bitches,they steal my shampoo and hog the hot water.

Because You Can’t Just Wish It Away

I feel like such a failure as a parent, on June 24, 2009 the doctors sent us home from the hospital with a healthy new born baby; and I couldn’t keep him that way. They trusted me, Gage trusted me and I failed them. I understand this is like one of the most  irrational thoughts on the planet, but I can’t help it.  I’m his mom and I am supposed to protect him, keep him safe. Yet every time he gets chemotherapy I am putting toxic chemicals into his body, that I can’t even throw in the trash because it’s so dangerous they need to be incinerated. I’m pumping this directly into his heart. His HEART!

The one question I have gotten asked at least once a day if not more since Gage was diagnosed with leukemia is “how do you do it?” or “I don’ know how you guys do it.” Really? Like I have a choice, I can’t twinkle my nose, fold my arms, and nod my head to make this go away. Trust me because I have wished, begged, pleaded and threatened the world to make my baby better and I can’t make him better. But truly I do what I have to do, I don’t have a choice. He hasn’t given up on me so I can’t give up on him. I will continue to fight for him, for the rest of his life.

When Gage was born, I made the decision to try and exclusively breast feed, it was hard, and it took a lot of work and dedication on my part, and lots of patience on the Hubs part. Thank goodness he has a lot of patience, because my breast pump was my best friend for nine long months. Which was how long I was able to nurse for. After Gage was diagnosed, I kept having this reoccurring  dream, that I was still able to nurse and the cure for his leukemia was my nursing him. I woke up and it was so real, I was lying on a cot in his hospital room, ready to cry because here was the answer, the cure to his leukemia! and I had it in me the whole time, literally, IN ME! But after I really woke up and looked at Gage, asleep in his hospital crib with tubes and wires hooked up to him, I realized it was all just a dream and I was back in Kansas again; but instead of Kansas I was in room 4114 on the fourth floor of the pediatric unit.

Sometimes I wish I could click my heals together and go back to the day we left the hospital back in June 2009. To be completely ignorant of all the hell we have been through. To never have seen my child almost die in from of my eyes. To not cry with my sisters every we time we talk about “that night”, because they should never have had to see their 14 month old nephew intubated. I hate the fact I had to call the Hubs at 11:45 at night telling him to get back to the hospital, because they needed to take Gage into surgery and they don’t know if he is going to make it. I don’t know how the Hubs can trust me after that, when I don’t even trust myself.

This was our first day home from the hospital back on June 24, 2009 we were so tired but so happy. I'd give anything to go back to that day.

An Almost Normal Day

Last week I had emailed Megan at the Pablove foundation, because I had questions about the True Pablove event. I really wanted to be able to attend but was unsure of going because of all of the people. So I emailed Megan asking if there was going to be a place for kids with cancer, just so they would not be around all of the people; in case somebody was sick. Megan emailed me back, saying unfortunately no, there would be no special accommodations, but that they’d love to have Gage and his guests come to the event as guests; and they hoped we could make it. Which was so nice if them, thank you so much!

It was so amazing to be able to spend the day outside with Gage, my parents, my bestie and her daughter. Gage had a blast! I really felt like he was a normal toddler for the afternoon. He got to meet Yo Gabba Gabba, listen to Gwendolyn and the Good Time Gang and decorate Valentine crafts; it was such an amazing day. It was easy to forget why we were there, that we were honoring the memory of a little boy who lost his fight with a bilateral Wilms’ Tumor, by trying to raise money to fund pediatric cancer research.

It really was such a great day, one I will remember forever and make sure Gage knows about it too. It was an almost normal day.

1-10

YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…

  1. You carry a tube of Emla in your purse instead a tube of lipstick
  2. Kids with hair look kind of strange to you
  3. You can sleep anywhere, and anything that reclines more than 15 degrees looks “comfy”
  4. Your spouse asks what that sexy perfume is, and it’s Betadine
  5. You don’t realize the sharps container is on the kitchen table until half way through dinner
  6. You enjoy the drive at 3:00am to emergency because there aren’t any other cars on the freeway
  7. You can name all the equipment used on ER
  8. You can deaccess the patients on ER before the Docs do
  9. You hear a truck backing up and you think the IV is beeping
  10. You are so proud when your baby finally gets hair (and he is 8)!

*** I found this at this website, http://squirreltales.com/ I thought it was funny and thought I’d share.***

Good times

This is what we are doing today…


More Monday!

XOXO

Their Strength

So I have a secret. I read other mommy bloggers and the journey that is their kids leukemia. All. Day. Long. Much to the Hubs dismay, because this means I generally get nothing done. All. Day. Long. But I read their blogs to see if ours lives are similar, to know that I am not alone, that Gage is not alone, because even if I talk to the other moms in the clinic, it’s just not the same. I talk to those woman once or twice a week in the clinic, where these woman on the internet, who have no idea who I am. I read about them everyday, getting to know them, getting to love them. ***I kind of feel a little like a stalker, weirdo right about now***

I get strength from these woman, knowing that they have been through hell and back, and they have survived even if their babies don’t. I have cried desperate tears of pain, while reading funeral preparations for their babies. I have cried happy tears while reading posts written about when babies had their last chemo treatment, and got to go home for good, never needing to have another lumbar puncture or bone marrow aspiration again. I’ve gotten sick to my stomach at seeing the word of relapse, and praying and bartering with God or whatever divine being is out there to please never let me hear those words said in the same sentence as Gages name. I have found myself in these woman, and hope that someone is reading what I write and if they are going through what I have gone through that they get strength from me as well.

What I have learned from the majority of these blogs, is that not only do I have the most amazing health insurance, but the hospital we go to is fan-fucking-tastic. I have read about kids having to wait for five hours, before being admitted into a hospital room, or that when from the time Gage was diagnosed with leukemia to the day we knew the type of leukemia he had, acute lymphoblastic leukemia was a total of five days, which I guess is not the norm, because I have heard some places take up to four weeks for results. Those five days seemed like the longest of my entire life, I know I would have gone crazy if I would have had to wait a whole month. Did you know that some hospitals have cancer patients share rooms?! This has got to be the most absurd thing I have read so far! There are no good things about leukemia, chemo, or hospital stays but having our own room is a little, teeny tiny perk.

One of the terms I have heard over and over again has been a baby has “earned” his or her wings. Yesterday I read that Josiah has earned his angel wings, and I hate that term, because he should not have earned them so young. He should have gone to college, gotten married and knocked his wife up with eight babies. He should never had gotten sick in the first place. I hate that we can put a man on the moon, pick the gender of my next kid if I wanted to, or wear underwear that magically makes my waist and thighs two inches smaller; but we can’t find the cause or a cure for childhood cancer. The world truly does suck in that regard.

A Day of PabLOVE

True PabLOVE
A Valentine’s Family Celebration

Saturday, February 5th
11am–3pm

Quixote Studios East
4585 Electronics Place
Los Angeles, CA 90039
$50 per person

Unique Valentine-themed craft booths, live music,
silent auction, Pablove Shutterbugs Giving Tree,
kid’s activities, and great food and beverages.

Meet Yo Gabba Gabba, jam to Gwendolyn and the Good Time Gang and make new creations with Kauzbots, Simple Shoes, Scribble Press, and more!

Please email info@pablove.org with questions about registration, sponsorships or to contribute auction items.

For more info about The Pablove Foundation visit pablove.org.

PabLOVE

Pablo Thrailkill CastelazJune 21, 2003 — June 27, 2009

The mission of The Pablove Foundation is to fund pediatric cancer research and advances in treatment, educate and empower cancer families, and improve the quality of life for children living with cancer through hospital play, music and arts programs.

The Pablove Foundation is named after Pablo Thrailkill Castelaz, the son of Jo Ann Thrailkill and Jeff Castelaz and the little brother of Grady Gallagher. Pablo was six years old when he lost his valiant yearlong battle with bilateral Wilms’ Tumor, a rare form of childhood cancer. Imbued with his spirit and inspired by his strength, Pablove is dedicated to the daily, global fight against childhood cancer and the suffering that comes in its wake.

We fight on in order to amplify one simple message: kids get cancer too.

A young, growing foundation, Pablove has begun to make its mark. Since their founding, they have put together a number of fantastic benefit concerts in Los Angeles, Seattle, Austin, New Orleans and Milwaukee. In 2010, they rode from Seattle to Los Angeles to raise money and awareness for childhood cancer during Pablove Across America, their annual cross-country bike ride. They visited and contributed to Hem/Onc playrooms at children’s hospitals in Arizona, California, Oregon, Texas, Washington, and Wisconsin.

In November 2010, they hosted a Wilms Tumor Symposium for patient families and medical professionals and they recently launched the Pablove Shutterbugs pilot program which teaches children living with cancer to develop their creative voice through the art of photography. Their incredible Scientific Advisory Board will begin reviewing grant applications in February 2011 and will award two $50,000 grants for childhood cancer research in April 2011.

www.pablove.org

Gold Ribbons

The gold ribbon is the official ribbon of children with cancer worldwide, supported, recognized and promoted by hundreds of organizations and treatment centers, families, friends, and caregivers, including:

The National Childhood Cancer Foundation

  • Association of Pediatric Oncology Nurses
  • Children’s Oncology Camp Association
  • The Candlelighters Childhood Cancer Foundation and its chapters nationwide

A man who lost is wife his called a widower. A child without a parent is an orphan. But what of a woman who loses her child? What is she called?

http://www.goldribbons.com/

Life, Not Like I Imagined

Some days I really feel like I am barely staying afloat. The last couple of nights I have been having trouble sleeping. I lay awake for hours staring at the wall above my bed, not seeing the wall itself but a movie reel of those first nights in the hospital. Me holding Gage in my arms as a nurse tries without luck to find a vein to start an IV as Gage slips in and out of consciousness. I see his pupils start to dilate, and his mouth starts to foam. I hear the nurses asking me to please go sit in the parents waiting room, since it was starting to get crowded with all the nurses and doctors rushing in. I’m walking the hallways, again. In my nightmares I’m just walking a hallway, lap after lap after lap. CODE PINK is blaring out of the hospital loud speaker and I can’t stop screaming. This is my hell and I have been here almost every day since August 2, 2010.

These last few weeks Gage also has been suffering from nightmares, I hate that he can’t tell me what he is dreaming about. When I go in his room to check on him when he cries out at night, his sobs of terror are heartbreaking; nothing can comfort him. The look in his eyes kills me, because I wonder if he is remembering those nights, like I remember those nights. I had hoped that he wouldn’t remember any of this, that he would be too young; so far it looks like that may not be the case. I hate those nightmares for him more then I hate those nightmares for me.

I am constantly waiting for the other shoe to drop. Our lives have been such a roller coaster ride I keep praying, hoping, and wishing that we can keep on this positive healthy path Gage has been on. But he has a little cold right now, and I get up like eight times a night to make sure his cold hasn’t turned into a fever, I count his coughs every hour to make sure they don’t get worse. His poor doctors must hate the fact I have every single one of their phone, pager, and fax numbers on speed dial. Because, let me tell you since Saturday I have been calling, paging, and faxing at least three times a day. “No, Mom the cough is not in his lungs. It’s just a cold. He’s fine.” How do they know, since they haven’t seen him in a few days? We go back to the clinic for another dressing change, hopefully he will have improved by then that way we can have an easy, stress free weekend.