Friday, November 1, 2013

Fighting Childhood Cancer, One Cup at a Time - Quilter’s Bee Charity Fundraiser

Friday, November 1, 2013


I have been invited to be a part in SewCalGal’s Quilter’s Bee Charity fundraiser. We have chosen to raise funds for Alex’s Lemonade Stand Foundation. Many of you are already familiar with my passion for Alex’s as I have been involved with them for many years. My best friend, Lauren, passed away from a brain tumor when we were in college and our sorority began holding lemonade stands in Lauren’s honor. 


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Three years ago my nephew, Elijah was diagnosed with Leukemia and again it became very clear we need more research and ways for children to beat cancer. My sister in law has become a hero family speaker for ALSF. At the recent LA Loves Alex’s Lemonade event both Karin and Elijah spoke to the crowd of over 1,200 people about Elijah's experience.


Photo from Alex's Lemonade Stand Foundation - Photo courtesy of Stefanie Keenan.


“Hello I am Karin and I am Elijah's mom. When Elijah was 3 years old we took him to the doctor because he was pale. The doctors thought he may have a virus but they sent us to the hospital to have more tests run so we could figure out what was causing his anemia. Later that day we were told that Elijah had Acute Lymphoblastic Leukemia, a blood cancer and the most common pediatric cancer. In those first moments we were overwhelmed and scared and we couldn't imagine what the future was going to hold for our son.




Within 24 hours of Elijah’s diagnosis the doctors placed a PICC line his arm to deliver chemotherapy.  They also started him steroids some pretty intense antibiotics. We would spend most of the first 45 days at the hospital isolated from everyone but the nurses and immediate family because the risk to Elijah was too great if someone were to be carrying germs. Elijah spent the time watching Despicable Me on loop and at one sitting we watched it over 300 times. We learned the ins and outs of the hospital, such as which floors had the best vending machines.  We learned that when a 3 year old on steroids demands macaroni and cheese at 5am someone in the kitchen will make that happen. We had moments of hysterical laughter but also had moments of tears over what Elijah was going through.



When we were finally released from the hospital, we decided it would be best to shave the rest of Elijah’s hair off so he no longer had to deal with large clumps in his mouth all day long. I thought since we were deciding to do it ourselves it would be easier, but I was wrong. Elijah cried and pleaded for it all to be over and when it was, there stood a little boy looking back at me that I didn't know. He was so swollen from the steroids and his blond locks were gone. All of the little boy I had raised for the last 3 years was gone and I finally understood why they called his cancer ALL. All that I knew was changed when he was diagnosed and we struggled to find a new way. 



After those first 45 days were over we began living at home again. We did our best to provide Elijah with the kind of childhood we had always dreamed he would have. We could no longer go to the park or the grocery store or school so our imaginations were our only escape. We had friends over when his blood counts were good and at times they weren't we donned our super hero capes and pretended to be stronger then everything else.



Elijah was given a movie called “Paul and The Dragon” that helped him understand what cancer was and what his body was doing. Some days when Elijah was feeling especially angry he would take his stuffed dragon and beat the snot out of it with his play swords. I won't lie and say we didn't cheer Elijah on to hit it harder or faster, nor will I say that I never took a whack at that dragon. As time passed Elijah completed what is known as frontline treatment and began the maintenance stage of treatment. On maintenance Elijah was allowed to return to somewhat normal life including school.




For most people Elijah looks and seems like any other normal almost 6 year old. He is in First Grade, loves video games and hates vegetables. This seemingly normal life hides the fact that cancer is not over for him or for us. He still takes chemo every night at home. Once a month he has an injected chemo and another steroid pulse, and every 3 months he goes to the sleepy room for a spinal. He also goes once a week for occupational therapy to help him overcome the side effects of chemo. We panic each and every time someone in his class is sent home sick because a fever for Elijah means we will be spending the night at the hospital and figuring out what to do with Elijah's sister and brother that aren't allowed at the cancer center. 



Through this we have become strong supporters of the work that Alex's Lemonade Stand Foundation is doing. We have learned that while cancer is the number 1 disease killer of children it is grossly underfunded. Less than 5% of the federal governments total funding of cancer research is dedicated to childhood cancer research. They excuse that lack of funding by saying that the 5 year survival rate for children is very high, however everyday an additional 250 children die from cancer. Of those that do survive 2/3 of childhood cancer patients will have long lasting chronic conditions from treatment. There is no cause of pediatric cancer and it affects all ethnic groups, socioeconomic class, or geographic region.




Alex's Lemonade Stand, through the vision of one incredibly brave fighter, is working hard to bridge the gap in funding research. The research Alex's is funding is helping to make the difference so that someday no parent will wonder if a cancer diagnoses will be a death sentence. Someday children will not have to endure years of treatment to make sure the last invisible bit of cancer is gone and parents won't wonder what the trade off that cure cost their child. Thank you for being here and spending your time, energy and money to help Alex's fund more research to help all the children facing cancer a chance to beat the snot out of a terrible dragon.”


My Family at the LA Loves Alex’s Lemonade event.
Photo from Alex's Lemonade Stand Foundation - Photo courtesy of Stefanie Keenan.


Photo from Alex's Lemonade Stand Foundation - Photo courtesy of Stefanie Keenan.



So please go over and visit SewCalGal and make donations, buy raffle tickets and bid in the auction. The money we raise helps make a difference in the lives of kids like my nephew that fight every day.





© Blog post written by Julie Herman
For more information visit http://www.jaybirdquilts.com/

6 comments:

SewCalGal said...

Thank you Julie for sharing heartfelt insights on Alex's Lemonade Stand. I think it is so cool that Elijah spoke to a crowd of over 1,200 to share his experience.

Big quilty hug. I hope we can increase awareness on this great charity and raise money for it too! I'm absolutely delighted to have you participate in the Quilter's Bee Giving Charity Fundraiser this month.

SewCalGal
www.sewcalgal.blogspot.com

Marjorie said...

What a wonderful story of determination and hope. Alex's Lemonade Stand definitely deserves more awareness. So glad we've all joined for this awareness and fundraiser event.

Jennifer Schifano Thomas said...

Every time you talk about this serious topic it makes me cry. I hate cancer. I want to beat the snot out of the dragon, too. Thanks for this important post.

KaHolly said...

What a touching story. How wonderful for you to share.

qwilltr said...

Your story touched my heart. I have a grand niece, Alyssa Zoll, in Washington State that was diagnosed with Ewing's Sarcoma a few months ago. She just turned 11 years old this month. Her's is a rare bone cancer usually found in children. They are struggling as well but many wonderful businesses and friends have been sponsoring fund raisers for the family to help them get by. It's a horrible thing! God bless you and you family! My prayers are with you all!

mascanlon said...

Lovely, lovely post about your amazing family Julie. can't believe how much Elijah has grown . Your family is so strong and close, a loving example. Hugs!