A special welcome to everyone to The Story Room......Hope and Courage. We meet every Monday evening, starting around 7:00 pm EST. One person posts his/her story, and the rest of us reply. The person "hosting" each week will stick around a bit to read and reply to your comments. The post will remain up all week for those who may not be with us on Monday evening, and comments will remain open, so feel free to leave a reply or message during the week. There are no rules in The Story Room. Please share whatever you want to share. Whether you have lost a child or even if the child you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time), whether your loss is recent or many years ago, you can come to this diary and process your grieving in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, just leave a message for AJs Dad - everyone is welcome.

MY STORY.......

Kate, my youngest child, was just 4 yrs old & in preschool. Just like most preschoolers she had been battling a cold, but hadn’t ran a fever all week & even went to school on Friday. She saw her pediatrician at 9am on Saturday, February 2nd of last year. Just 4 hours later at the local hospital, he came in to tell me……….cancer…….leukemia. He had already spoken with her new oncologist & our new hospital. The nurse came in, picked me up off the bathroom floor, & reassured me she was going to be ok, but I had to pull myself together for her & for my family. There was a new nurse there that day, too. She bought Kate a teddy bear that was lovingly named Butterscotch & became Kate’s best friend. Kate needed blood & platelets before we were transferred to St. Mary’s in West Palm Beach (a COG facility), 1 hour from our home. As I sat in the back of the ambulance, comforting her & trying not to lose it myself, I watched my life as I new it stay behind.

That’s how my journey into childhood cancer began.

So far, Kate’s treatment has went well (cross fingers, knock on wood). She responded to chemo & was NED within weeks of beginning her protocol. She didn’t even lose all of her beautiful, straight, blond hair until September. It is now a mass of brown curls! This year, to commemorate her diagnosis day, we held a birthday party for Butterscotch the Teddy Bear! She was able to go to 1st grade this year, for a few weeks. But her counts have bounced around & we just don’t want to take that chance. Especially since there have been a few cases of swine flu at the school.

When she was in school, she made some new friends… one of them is named Lekenia…….. anybody else see anything upsetting about this name? And guess what Kate calls her…..riiiiight, Leukemia! Of all the kids in all the world, she has to be in my daughter's class!?!

I have found different ways of dealing with this journey, for instance in the hospital I began making jewelry & even sold enough to the nurses to keep Kate in stuffed animals! The gift shop loved seeing me come in. I have some jewelry on my website www.cancerstinks.etsy.com I’m giving the profits to CureSearch. I’m going to make a Gold Ribbon Ornament for Christmas & will put it on there to sell. I also organized a group of volunteers to come & repaint the doctors office. After painting I redecorated (my former career) & have made it a colorful place, so the kids (and parents) aren’t afraid to come. I’ve also held 2 Alex’s Lemonade Stands at the school. We’ve made about $600 & have brought much needed awareness to the community.

My next project is organizing a CureSearch Milestones walk in West Palm Beach. CureSearch is very excited, right now there are no walks in Florida & we have 3 COG hospitals in the area. I’m fed up with the other not for profits who just want my child’s picture when she didn’t have hair. The “business” of childhood cancer is sickening & shocking.

But what I’ve done that I am most proud of… I’m in NURSING SCHOOL! I only needed a few pre-requisites & started Fundamentals of Nursing this semester. In the hospital, there are many organizations there to help the kids & families, but they all leave at 5pm. It was my nurses that gave me the strength, the knowledge, and the hope that I needed to make it one more day. I love my nurses!

Thanks so much to AJ’s dad for giving us this opportunity to come together as one voice united.

I would also like to thank everyone for reading my story tonight.
If you would like to read more…. www.caringbridge.org/visit/katherineprokop

Mary Prokop
Certified Momcologist & Anti-Infectious Engineer

p.s. Some of my closest friends are the families I have met at the hospital & the dr’s office… every now & again I get together with the mom’s……. so we call ourselves “MOMCOLOGISTS”…….feel free to borrow it!

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Thanks for sharing, Mary. Praying for continued health for Kate and your family! Good luck with your nursing classes; somehow, I just know you will be one of the great caregivers families will grow to love, just as you love those you have encountered along Kate's journey.

All best,

mom of ^^Arden^^ (NBIV, forever 3), Grayson (almost 3), and pending little Bucher # 3
Thank you Amy, I was looking at your profile on here & reading your story... Arden was a lucky little girl to have you as her mom..... May peace, hope & love forever fill your hearts...

The first nurse to take care of my son had a child with cancer- leukemia-today he works for NASA. It helped me to have someone take care of him and talk too us that had been "there". You are going to be an incredible nurse! Praying for your family.

With Hope,
mom to Cliff 15, Morgan 13, and Allison 8
Thanks Jenni,
It really does make a difference when you can talk with someone who has been "there". It gives you HOPE...

Thanks so much for the kind words.
Thanks Mary, for telling your story. Your experience as a cancer mom - oh right, MOMCOLOGIST, will certainly benefit all the patients in your future. I cannot say enough about the nurses who cared for Annika, and for us. All the best in this new leg of your journey.
Also, I have seen your jewelry on Etsy (I search everywhere for childhood cancer these days!) Keep up the good work :)

mom to Kristofer (14) and Annika (12, dx 2/09 - NED 5/09 Burkitt's Lymphoma)
Thank you so much Karla,

I have to say that being a MOMCOLOGIST has been the hardest job ever & hope that I can help other families through the next leg of their journey.

I also search everywhere for childhood cancer & just had a silversmith from etsy create me a gold pendant... handmade is so much better than store bought!

My best to you & your family,
Thanks Mary for sharing your story. It is hard to leave our life behind as we knew it, but we learn to live our new lives, making new friends, gaining new strength and cherishing every moment like we never did before. Wishing Kate continued good health.Good Luck with nursing school!
Mom to Ishani (aged almost 7, rhabdomyosarcoma 06/06 - still fighting) and Monisha (aged 9)
Thanks so much Dash. I have to say my life now has no resemblance to what it did before Feb 2, 2008. When I hear the other nursing students freeking out over tests or assignments I just laugh and tell them they need more stress in their life! If that's the hardest thing they have to do, they need to do more!

May good health & hope always be with you.
I am always amazed by what one person can accomplish, and as you gather others for your efforts, you will only become stronger and more successful. Thank you Mary for all you do, and all my best to Kate. You will be an incredible nurse.
Thanks Bob for giving us this opportunity to have a place to raise our voices & stand united.... that is the only way we will ever find a cure. All children should be & one day will be, guaranteed a cure...... so we can all celebrate their many "MILESTONES" in their long lives...

May peace, strength & hope be with you & your family.
Hi Mary,thanks for sharing your story.We LOVE our nurses! Although we did not get what we hoped and prayed for,to this day we consider our nurses part of our family and stay in touch with them.They are truly beautiful people with huge hearts.Will pray for Kate's complete healing.
Helen,proud Mommy of Super Maggie.
Thank you so much for your kind words. Nurses are truly special people & if I can only help one person the way my nurses helped me, then my life has made a difference.

My heart goes out to you & your family for your loss.
Strength & peace be with you...


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