Levi’s Story

Site created on March 24, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Amy Franklin

I’ve been quiet this week as I’ve been soaking in this week between treatments, a reprieve of sorts. Levi has been such a joy, a happy little toddler, eating well, napping well, playing with his brother and sister…I haven’t captured so many smiles in photos only because I’ve been trying to focus on the mental pictures of those moments. 

After the fantastic news about his remission, my mind turned to apprehension about his next stage of treatment. I think because we were thrust into treatment so quickly after diagnosis, I didn’t feel the luxury of time for anxiety with the first stage. After joining various parent groups online, and hearing different accounts of treatment, I better know what to expect, which is good and bad. We always say we’d rather know than not know, but it also lends itself to anticipation. 

Today he started day 1 of Consolidation. It consists of IV chemo once a week, pills at home, nausea meds, and home health nurse visits. 

We hope he’ll fly through these 8 weeks with few side effects, but in reality most kiddos see varying levels of nausea, most have a loss of appetite, and in the most severe cases, some kids require feeding tubes. This stage also typically sees the need for various transfusions (blood and platelets) and his ANC will most likely dip again, so monitoring for fevers and reducing germ exposure will continue to be critical. 

After these 8 weeks, we begin a new stage called Interim Maintenance. This stage will have him in the hospital for at least 4 visits that will last 3-4 days each. The plan as of now has that happening in July/August.

It’s a lot to take in, and we really just focus on the day to day, MAYBE week to week of the stage we’re in. 

Luca and Harper continue to do well, they’re enjoying this playful Levi. Luca is loving spring baseball, and Harper is learning reverse somersaults in gymnastics. 

If anyone is interested in more general reading about the treatment stages, this is a handy 

We’re always happy to answer any questions, and we appreciate all of the help and support!

With love,
Amy 

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