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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Mary,
Just a wonderful testimony to what we “momcologists” (I really love that!!!) can accomplish when cancer attacks are babies.

How wonderful that you have found a creative outlet and how blessed will your future patients be with you by their side helping and guiding them. My daughter, who was 16 when her little brother was diagnosed, is now in nursing school, too– educating her peers and her professors about childhood cancer!

My best to you and your family and prayers that Kate gets back to school.

Mary Beth, Sean's mom
Thank you for sharing your story. Thank God that your daughter is doing well, and I will pray that she continues to do so great. Congratulations on starting nursing school-its incredible that you are able to enter the field after you have had such a personal experience with it. Good luck on your studies, thanks for all you are doing, and thanks again for sharing your sweet daughter!
Mary,

I marvel at what a parent is able to do when they love a child. When they can recall the day, the moment the place that they watched their old life "stay behind", and yet move forward as they must. I love that this journey, although out of your control, has enabled you to do something wonderful...... school, advocacy, etc.

Your daughter's little friend does have an interesting name, but perhaps there are no real coincidences in life huh?

I wish you and your family continued success and good spirit.

Connie Prutting
AJ's Auntie
I really would like to thank everyone for their wonderful words & comments.
One of my fellow "Momcologist" is going through some tough times... her son has relapsed with T-cell ALL & is not responding to the chemo to get him back into remission.
Would you all please keep them in your prayers tonight?
www.caringbridge.org/visit/pauldeyoung
They need all the strength, love & hope available....
Thank you,
Mary

Hi Mary,

 I finally found your story room ! Thanks for letting me know about this site oh and you are a fabulous nurse !

Laurie Curnan

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