Jack and Kenzie

Today we have the honor of sharing Jack and Kenzie’s story with you as told by their family:

“Jack was 10 yrs old and Kenzie was 9. They were both previously very healthy. January 2019, Jack started complaining of double vision and headaches. I took him to his primary. His neuro exam was normal. I went home “watching him.” A week later he started walking on the inside of his foot and tripping. We went to Children’s Wisconsin immediately. There was significant swelling to his spinal cord and lesions on his cerebellum.

After a couple admissions for high dose steroids, and being discharged on steroids, he was diagnosed with CNS isolated HLH, 3 months later.

This is when we had Kenzie tested to see if she was a donor match and to see if she also had HLH. She was not a match but unfortunately realized she also had HLH but asymptomatic. They planned to watch her with monthly labs while Jack was being treated.

While Jack’s HLH was being calmed with steroids and chemo waiting for transplant, somehow he got shigatoxin e.coli. From this, he also developed hemolytic uremic syndrome (HUS). He became extremely sick and spent the next 4 months in the PICU. He spent time on continuous dialysis, had many small brain bleeds, a severe GI bleed, perforated his bowels needing emergency surgery to remove his colon causing the need for need for an ileostomy, had impaired wound healing from such high doses of steroids that his abdominal incision would not stay closed, compression fractures, and idiopathic pneumonia syndrome.

Sept 2019. After all of this he was no longer well enough for a transplant but was able to be discharged home.

They found a 10/10 unrelated donor for Kenzie. She was still doing well at this point. After an LP, one value was very slightly off so they began treatment of chemo and decadron. For the first time, she developed active HLH. Her transplant was put on hold. Kenz then also developed compression fractures in her spine. She finally was able to get her transplant

January 2020. She had some issues with acute GVH, but overall did well.

I was able to enjoy having both kids home for a couple weeks prior to Jack going in to see if his kidneys were well enough to try transplant. They were!!! All the doctors were shocked. We were so grateful for this chance.

June 2020. Jack was now getting a lower intensity chemo for a half match parent transplant with his dad as his donor and needed one full body dose of radiation.

A couples year after the transplant, he was able to get rid of his ileostomy.

They both celebrated 5 years post transplant this year! Their chimerisms are 97-100%. Jack just turned 17 and Kenzie is 15! They are both doing amazing in high school and enjoying growing up!”