Got EBB?

Nothing that’s what.  At least with Elizabeth’s bone marrow.  It looks like Maintenance will have to wait one more week.  She did not make counts again this week to be cleared for maintenance.  SOOOOO we are really hoping next week will be the magic week Elizabeth starts her year and a half maintenance therapy!  Although Elizabeth would say this week was the magic week (I will tell you why in a minute) It seems like we have been waiting forever!  Not much really happened in a week.  Her ANC has stayed about the same.  But, I have a feeling about next week.  IT IS GOING TO BE A BIG SPARKLICIOUS WEEK WHERE THESE LEMONS OF OURS TURN INTO THE SWEETEST LEMONADE POSSIBLE. So Elizabeth has been talking all week about how she wants a pet hamster.  We took our dogs to Pet Smart to get check ups last week and she spotted the so very cute “dwarf hamsters”!  Adorable indeed, but needless to say a dwarf hamster is not in our future according to the doctors and Daddy.  Do they realize who they are dealing with?  Do they realize who they are telling no?  Elizabeth doesn’t take no for an answer.  She never has and she never will.  That’s just how she rolls, strong and determined!  Which is why she is making big changes with this no good very terrible problem we call, childhood cancer.  So even though she has begged, pleaded, batted her eye lashes and smiled from ear to ear (lipstick and all), the doctors and daddy are still telling her no, but somehow she still managed to have a little rodent show up ready to make a nice cozy home in Bryce’s closet this weekend.  Yep, when all else fails use a magic penny and throw it in a fountain or so Elizabeth would say.  We found a mouse this weekend living in Bryce’s seriously cluttered closet!  I have decided a yard sale is in our future and so for lack of cleaning out EVERYTHING over the past 8 months as well as moving homes in addition to closing a home furnishings store, I believe we could stand to make some serious cash for EBB Foundation with a yard sale.  So a yard sale it is…  We may even offer our new furry little friend for sale since we can’t keep him.  Let the raffle begin…starting bid $20.00  Comes with a kennel and spinning wheel that never stops spinning and if we could possibly have visiting rights or babysit once in awhile that would be awesome! A mouse running on a spinning wheel kind of sums up how I have felt for awhile now, waiting for counts to come up and be cleared for Maintenance.  Running on a big gigantic wheel trying to get somewhere but getting nowhere.  I guess I’m not surprised that Elizabeth awoke from a nightmare last night.  “Mama, I had a nightmare.”  As she sobbed next to my bed.  “Oh baby, about what?” as I had her lay next to me.  I mean it could be so many things, considering the last 8 months.  All the pokies, yucky medicines, bone marrow aspirations, spinal injections, losing her words, losing her legs, losing her hands, losing her smile, losing her hair twice,  injecting poison almost daily into her little bitty body that makes her feel beyond yucky at times.  It’s been a very scary 8 months!  She said, “Mama, just hold my hand, please.”  As I grabbed her hand, her tremor was worse than it has ever been.  I can’t imagine trying to relax with that feeling of constant shaking.  It was soothing to her to just have me hold her hand so that she could have stillness and rest a moment.  My baby has gone through so much.  TOO MANY SCARY, NASTY, HORRIFIC, events from childhood cancer which deserves so much more attention than it gets.  I made a vow a long time ago, that I was devoting my life, forever, to slay childhood cancer.  After last night I could not be more sure of anything to fight for!  In case you were wondering,  her nightmare was about a mouse with a needle for a nose so there you have it.  (Pokies and finding a pet mouse all in one) I have to give a BIG shout out to Girl Scout Troop 274, with their EBB Fundraising Event, which I heard through the grapevine was quite a success!  I hear they raised $1500.00!!! WooooooWhoooo!  Way to go girl scouts!  You are so BEAUTIFUL!!!  Thank you Girl Scout Troop 274! If you want to help SLAY childhood cancer here are some upcoming ways you can help!

Kinny’s Kause Blood and Bone Marrow Drive

Where: LDS Maplewood Building Cultural Hall 3775 S. Greenfield Road, Gilbert, AZ 85297

Contact: Aimee@bananahorn.com to sign up to be a potential bone marrow donor!

Elizabeth’s very special friend McKindree Patton is currently being treated for a very rare bone marrow failure called Diamond Blackfan Anemia and CVID (immune deficiency).  She receives blood transfusions every four weeks at PCH, as well as plasma infusions monthly.  For patients like her…IT IS LIFE SUSTAINING!  Kinny’s Kause is excited to partner with United Blood Services to coordinate blood drives and bone marrow donor drives (bethematch.org) to “give back” for the generous donations that have been given to her!  Bone Marrow testing is a simple, 10 minute process where you are swabbed four places on your cheeks.  You must be between 18-60 and willing to donate for any one particular patient.  YOU have the power to save a life!!! Take the first step on April 28th!