Elizabeth Brooklyn Blair

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! Fun Fun Fun
Saturday, April 28th, 9am-2pm
Where: Central Farmers’ Market, which is located on the SE corner of Northern/Central will be donating a portion of all Central Farmers’ Market proceeds to EBB Foundation.  
The market vendors have prepared raffles, give-aways, prizes and Gift Baskets – along with their usual handmade artisan items or freshly picked produce.  Plenty of good food, coffee, fun for kids.  
Live music by our local neighborhood rockstar:  Jim Adkins of Jimmy Eat World, to start at 10am!  Elizabeth will be singing a song with him.  YOU DO NOT WANT TO MISS IT!
What in the bone marrow is going on?  Read below to find out…
Kisses for being a bone marrow and blood donor!
Saturday, April 28th, 8am-noon
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!

Comments on: "WHAT IN THE BONE MARROW IS GOING ON?" (4)

  1. Jodi Sabol said:

    Heidi,

    I’m so glad that Elizabeth has such a wonderful mommy to hold her hand through all the awful nightmares. Seeing a mouse in my house is enough to give me nightmares for weeks! She is such a strong girl. It’s not fair that she has to be so strong at such a young age. Allan and I were just at the Ronald McDonald house this evening making and serving dinner for families. Seeing all of their exhausted faces, their eyes looking like they have cried all day and have no more tears left, was so heartbreaking. I wish I was able to give them much more than just dinner. It was unbelievable to see so many families, and those are just the ones that showed up for dinner. Many were bringing dinner to their spouses that were staying at the hospital with their child. My thoughts and prayers continue to be with you. Miss you and love you!

    Jodi

  2. Suzanne Daly said:

    Thank you for Elizabeth’s update! I hate when my girls have nightmares too. Nothing that they could dream about could compare to the nightmare that little Elizabeth and your family has been through, however. Praying for all of you that things keep getting better and better!

  3. We will be there Saturday to support EBB! Running in an event in the morning but we will stop by around 12:30. Erin will be super excited as she talks about her friend Elizabeth all the time. My dad took her to costco recently and bought her a baby. We name all of her babies. He wanted to name the doll I don’t know what but she was very insistant on name the Elizabeth. When I was with them both, I asked her why she choose the name Elizabeth and she told my dad and I, “After my friend Elizabeth with cancer. Remember I went to her birthday party(the fundraiser with all the candy, nail plush and all things sparkly!)

  4. I don’t think my last comment went though. We will be there Saturday to support EBB!

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