April 2021- We went with my family on a trip to Destin, Florida. On this trip newly two-year-old Shai drank (what felt like) gallons of pool water, soaked his carseat with pee through diapers every other hour, peed off of the balcony of the condo (true story), and continued to struggle with a scalp that was slimy, scabby, itchy, stinky, and discolored and not getting better.

Within the next two months through multiple hospital stays, several forms of imaging and a few biopsies, he was diagnosed with Arginine Vasopressin Deficiency (also known as Diabetes Insipidous) and Langerhans Cell Histiocytosis (LCH).

April 2024- After three years of different types of chemo to treat LCH and the genetic mutation that produces the LCH cells, Shai completed (what we hope is) his final chemo shot!!!!! Praise the Lord!! Overall, our last year of shots has been okay. While we have struggled with some big emotions on shot days, dips in white blood count, the drudgery of weekly labs, and a few hospital visits due to viruses, overall Shai has been able to carry on with doing very normal four-year-old things! And now he's five!!

Special Opportunities- Over this past year, Shai's diagnosis has allowed for him to be the recipient of some really special opportunities. These are bright spots on this journey that he will not soon forget.

Make-a-Wish:  Through Make-a -Wish, Shai received a beautiful, brand new play set for the backyard! This felt like a gift beyond what we could ask or imagine! He also was asked to star on a local commercial for Detroit WXYZ news. It was so neat!

Rock Cancer: A pediatric neuro-oncologist at Mott Children's Hospital who has a passion for rock climbing started a program for children with cancer and their siblings to come and climb once a month for free at a local rock climbing gym. Last month Shai rappelled off a third story loft (with confidence, speed, and joy, I might add!) This has been such a fun opportunity for the boys!

Great Wolf Lodge: To join us in celebrating the end of Shai's treatments, our church family is sending us to Great Wolf Lodge! We'll be going in June and the boys are beyond excited! (Thank you Redeemer-Detroit!!!)

What's next? In the coming month Shai will have an MRI and more bloodwork to confirm that there is no active disease and that there is no presence of the gene BRAF600E3. If both of those are clear, he will continue to have bloodwork done routinely, a yearly MRI, and visits with the oncologist every 6 weeks for the next two years.

The relapse rate for LCH is between 30%-40% (although, there is a current study taking place that is trying to prove a lower relapse rate for the second type of chemo he just received.) Typically relapse happens within the first five years after diagnosis. We pray that this isn't part of Shai's story but are very aware of the fact that it could be. 

For now, we praise God that our summer will involve less poking and an immune system that is not suppressed!

Shai's Faith- One significant fruit of this suffering in Shai's young life is the evidence of faith in Jesus. Shai is quick to ask questions and make connections about Scripture. He is sincere in his prayers. He shows concern for others who are suffering. While we would never have wished any of this for our son over the past three years, we would not trade the beauty, grit, and growth that it has produced in our family. The hymn "His Eye is on the Sparrow" has come to mind lately as we watch and listen to all the birds that are announcing the arrival of spring. What they also announce is the truth that God cares and is near. His eye is on the sparrow, and I know He watches me.

His Eye is On the Sparrow

1. Why should I feel discouraged,
Why should the shadows come,
Why should my heart be lonely,
And long for heav’n and home;
When Jesus is my portion?
My constant Friend is he;
His eye is on the sparrow,
And I know he watches me;
His eye is on the sparrow,
And I know he watches me.

Refrain:
I sing because I’m happy,
I sing because I’m free;
For his eye is on the sparrow,
And I know he watches me.

2. “Let not your heart be troubled,”
His tender word I hear,
And resting on his goodness,
I lose my doubts and fears;
Though by the path he leadeth,
But one step I may see;
His eye is on the sparrow,
And I know he watches me;
His eye is on the sparrow,
And I know he watches me. [Refrain]

3. Whenever I am tempted,
Whenever clouds arise;
When songs give place to sighing,
When hope within me dies,
I draw the closer to him,
From care he sets me free;
His eye is on the sparrow,
And I know he watches me;
His eye is on the sparrow,
And I know he watches me. [Refrain]