Sunday, September 27, 2015

One Month Since the Diagnosis

When you speak, when you move, when you do what only you can do
It changes us..it changes what we see, what we seek...

A month has passed since Levi was diagnosed with Leukemia (ALL B-Cell type). It's been a rough month, but we remain focused on the many blessings that we have. We are leaning on our family and friends for support. It's truly amazing how blessed we are - to live close to family, close to the hospital, and to have jobs that are being completely supportive of our situation. Because of this, Drew and I are able to focus on Levi and Ellie to make sure they are feeling as 'normal' as possible. Again, we cannot say THANK YOU enough. If you're reading this blog, chances are you've given to us - either through prayer, financially, or in some supportive form - and we want you to know we appreciate you. 

Levi completed the Induction phase of treatment Friday - 29 days which started in the hospital...with a blood transfusion, finger pokes, port inserted, chemo after chemo, month of steroids, and lots of other medications necessary to save his life. Read that line one more time...can you imagine going through that yourself? I cannot. But we just witnessed our strong, brave, resilient 3 1/2 year old boy do it. It breaks me to pieces to watch, but it molds me back together at the same time.

Latest numbers
- WBC (white blood count): 11.2 (up from 6.6 the previous week)
- Platelets: 201 (last week was 256 but this number is good and no concerns)
- ANCs: 7.06 (up from 2.96 last week and basically tells us his body is capable of fighting off germs)

As you see above, Levi's numbers are looking good for a child with Leukemia. The doctor said these numbers will change as we continue through treatment so we cannot expect his ANCs to always be high - there will be times we'll have to stay inside and avoid high traffic areas, people with colds, etc. For now, the doctor said to allow Levi to go and do as he pleases...enjoy it while we can!

#RunforLevi
My girlfriend Kristen suggested we start #RunforLevi so others can send positive energy to Levi and our family as we fight this battle. I love this idea - basically, if/when you run (or walk!) - post a picture with the hashtag above and we share those pictures with Levi! Drew and I do it ourselves because 1) running keeps us sane 2) Levi loves running with us in the stroller 3) we need to remain healthy to be our best and to take care of Levi and Ellie. 4) it bonds us with all of you running for Levi! A girlfriend of mine from work just signed up for a marathon with Team in Training (Leukemia Foundation) in honor of Levi --- how AMAZING!

Christmas in September 
Yesterday afternoon we were sitting in the house when FedEx pulled up. The driver got out and loaded up 3 huge boxes and started coming up the driveway. I gave Drew that 'what did you order without telling me face' and he gave me the same look. Levi was smiling ear to ear. The boxes had #levistrong and #runforlevi written on the outside with notes on which box to open first and to get a camera ready. I'll do another post on this to share the pictures soon but we were SURPRISED by my work family from Wells Fargo with the most AMAZING care package for Levi! It was truly magical and Levi was smiling and laughing while digging through the boxes. More to come on this but I wanted to mention because it's yet another blessing...we are so loved.

Pictures from the past week
Levi at clinic a little anxious while waiting to get his IV connected through his port

Running a 10k for kids cancer (Isabella Santos Foundation) in Charlotte Saturday (Drew came in 5th while pushing a 36 pd Levi in the stroller!)

My rock, my love , one heck of a Daddy!

Super heros unite! 

Christmas in September thanks to my Wells Fargo family! Can you find Levi?!


1 comment:

Amy B said...

Thank you for these updates, Jules! Levi gets it from his mommy and daddy... you are all so strong! Sending love!