Eevie Elouise Fight Leukemia Fund
Please donate whatever you can give to my precious niece, Eevie Elouise. She was born by emergency c-section November 10, 2013 in Wichita, KS and was flown by Children's Mercy Hospital in KC to be treated fo
r congenital acute lymphoblastic leukemia (ALL). Congenital ALL is an extremely rare condition affecting 1 in 5,000,000 ( Only 4 million babies are born in the U.S. every year). Your support and donations are so appreciated. Brynne and Ryan need all the support they can get as this will be a long uphill battle. Eevie is 3 weeks away from her 2nd bday and is battling a mysterious illness most likely chemo induced.
I’ve never enjoyed spring before (I’m a winter). But this spring, I have a feeling I have never felt in the sunny months. I suppose it’s because the outside world is finally matching with our inner world. Yesterday, we received a call from Eevie’s immunologist who said that Eevie’s new baby T-cells are functioning AS THEY SHOULD. As a leukemia warrior mom, good cell function calls might as well be the damn Publisher’s Clearing House.
Baby duckies, tulip blossoms, T-cells…sigh…how enchanting. With newness budding all around I can’t help but feel certain elation. Heck, this spring I didn’t even mind smelling the smell those stinky white trees put off! I mean…I get that they are pretty…but why people? Why plant a tree that smells like barn?
Barn smell and all, I sure do like the colors I’m seeing. I like the clouds and I like the lime-colored grass and I love the baby duckies. Not sure I would have really appreciated the trees and ducks as much as I did if we didn’t go through all of the absolute crap with Eevs (staring at white walls for 12 months can really make the colors of spring pop). Actually…I’m not sure I would really appreciate anything as much...
We still have a long way to go...a lot of cell growth needed to be out and about. But I sure am enjoying home, enjoying springtime, and of course...enjoying little miss:))
FYI...today is last day to order your Eevie shirts!!
Eevie's immunologist from Children's Hospital of Philadelphia called yesterday and said that Eevie's test results look "exciting." Though very, very slow, there are some signs of growth. She stated that Eevie deserves a "gold medal" for everything her body is doing. We have to continue very strict precautions for immunodeficiency (no leaving the house, no playing in grass). We aren't out of the woods yet, but her body may be in the process of healing...we will retest in 2-3 months.
Go Eevie Go!!
I feel sick to my stomach when I place her things in the giveaway sack. It's like some sort of fog comes over my brain and an emptiness sets in. When I pack the boxes and tie the sacks my hands start shaking and I have the foreboding thought "is this what will happen if/when she dies?" I pick up each Minnie shirt and worry "what if she is gone someday and I want to hold her things!?!" Tears begin to roll and my brain battles with my heart to just put the damn ratty tee shirt in the donation pile.
I've heard the best way to clean out your house is to look at each item and ask "does this thing bring me joy?" If the answer is no, pitch it. I've been trying this process today and I'm not sure if it applies to moms with kids who had cancer or not....the joy and sadness seem so deeply intertwined. It's all so confusing.
There are a whole host of items that do not instill joy...Vaseline being at the top of the list (for those of you unfamiliar with Eevie's rash...we had to coat her in two tubes of it from head to toe 24 hours a day for four months). I considered taking the bag of it out and running it over with my car...but then I might actually have to touch the stuff again...no thanks. Tuba grip (does NOT instill joy) was collected (or hoarded) by my husband for months. We thought we were going to have to wrap her (literally like a burn victim) for many more months than we did. Whew!! Hickman site scrubs actually bring about a mix of emotion...one being pride that we got through two years of a central line...two being horror at the reminder of all the toxic sludge that went through her little chest. What a ride. Let me off.
The things I pack away and keep are a mix of "proud" items (typically related to cancer) or "normal" holiday dresses or ratty favorite Jammie's that do bring me authentic joy. And I guess that's what Eevie's "normal" has been. Cancer, holiday dresses, hickmans, and Minnie Jammie's. The good, the bad, the ugly...and the awe. I'd add the awe. That's our "normal."
I suppose what I am learning is that our "normal" is different. It is bad at times (the 11 months we spent inpatient). It is beyond words bad at others (the times we have been certain she was dying and the two times we had the "do we stop treatment" conversation). It is good at times (the times we have gained a new freedom like going outside or to the store). And it has been absolute radiant bliss at others (the time we heard that the doctors accidentally read her results wrong and she actually WAS in remission...the time we learned her rash was NOT a second genetic disease)!!
I guess I'm continuing to learn/accept the fact that our "normal" is just different. And I suppose that means my spring cleaning will just always be different. And that's ok. I'll clean and I'll cry and I'll mourn and I'll celebrate. I'll just do it all. And hopefully I'll get a little better organized
Happy Mother's Day! Go Eevie! Prayers and Blessings.
Such a good report. She is such a little warrior! So happy to see that sweet face smile!
We are soooo happy for all of you. God is so good! A very Merry Christmas.
I pray for little Evie and her family every day! Prayers have been answered for sure! Merry Christmas!
We are so hopeful that you are beginning to get the answers all of you need. We are praying for a miracle for this precious little warrior.
We cannot imagine your pain and frustration of no answers. We just keep lifting you all up in our prayers. God bless this precious little one and all her struggles.
Prayers for Eevie and her parents she is a precious little doll
We are so encouraged bu your post this morning. To see a smile and a "roar" from this precious child is wonderful. Deryl and I pray for all of you in this battle.
What a sweet angel. I will keep you and your family in my prayers. Have the doctor's tested Eevie for HLH (hemophagocycticlymphohistiocytosis) or Kawasaki's disease? My daughter had both of these diseases and had the exact same rash your little angel has. The rising levels of ferritin in her liver is what clued them in. I pray that they find what is causing this! God bless you all!
Eevie, I saying extra prayers for you!!!! May God hold you in His loving arms and comfort you!!!!
I like your bib Eevie!!!!
Eevie is so pretty & her hair/color is just beautiful! Thanks for all the posts, Kim!
It is so good to see Eevie growing and thriving and enjoying adventures with her family! Thank you for sharing her story. I love seeing her progress.
It is wonderful to see Eevie looking so good and to learn of her being so active! What a blessing!
So wonderful to see Eevie looking so good! Happy Mother's Day, Brynne! Thanks, Kim, for all of the updates!
Kim, Thank you so much for the reports! Eevie is such a strong little one! I love her & all of your family sooo much. You are ALL in my prayers! Hi, to Brynne!!!
Thank you Heavenly Father for answering our prayers! You rock Eevie!!!
Merry Christmas Eevie!!!!! You are soooooooo beautiful!!!! I pray for you everyday!