Benedict’s Story

Site created on November 23, 2019

Ben has had some light pink spots on his belly since he was about 6 months old. We noticed them getting darker and bigger and found them in more places. On November 22, we went to the clinic to have them checked out. The doctor did some blood work, but didn't seem concerned. About an hour after we left the doctor's office, the doctor called me with the results and changed our lives. Ben's white blood cells were high, and his hemoglobin and platelets were low. He told us to go to the ER immediately. Once there, they did further testing. By late afternoon, we were talking to the hematology/oncology team and they told us it was leukemia. The next day they had the type: Acute Myeloid Leukemia.

Newest Update

Journal entry by Jessica Shurts

It has been two years since our worst nightmare became a reality. Two years that have flown by and drug on at the same time. Two years that have changed our family, brought us closer, and taught (and is still teaching) us all about sacrifice. Ben also just turned 3 1/2, which means more of Ben's life has been since his diagnosis than before it. When we started this journey, I was just looking toward finishing treatment, toward "getting back to normal." Unfortunately, our world has not been normal since then, which has made the time since he finished treatment at times as challenging as the time while he was going through treatment. We are so very grateful that Ben is doing so well and that we get to enjoy his silly personality every day., but we wish it was safer to share him more with the world.

It has been a busy couple of months since I last posted. Ben had a couple more rough days at preschool, but then started to love it! He looked forward to going to "oooo". He had over a week off for MEA, and by the end, he was asking about it! We had conferences with his teacher last week and he has made a positive impact on his classroom. He has also been participating in Catechesis of the Good Shepherd at church. It is a Montessori based religious ed program. He was really enjoying that as well. Unfortunately, a couple of weeks ago, the number of COVID cases in the area became too much for our liking and we decided to pull him from preschool and CGS for a while. We are okay with some risk, but it got to be too much. Ironically, the next week, Ben's big sister ended up testing positive for COVID. She went directly into isolation in her room in an effort to protect Ben (and shorten the amount of time the other boys had to be out of school). She is now on the mend and the rest of us tested negative- Praise God! But this was definitely a reminder that things are not "normal."

We have also had a couple of opportunities to tell Ben's story and help the hospital in the last couple of months. In October, Rick, Ben and I were interviewed by the morning DJs from KS95 for their upcoming radiothon. Ben's story will be one of the stories shared as they raise money for Masonic Children's Hospital. Ben had so much to say during the interview (that no one could understand), he had to go play outside for a bit while we finished the interview. 😊 The radiothon will be December 10 on the radio and at the Mall of America.

For the month of November, Ben is the VIP Cookie Creator at MeiMei's Cookies and Creamery in River Falls, WI. Ben got to "design" a cookie to be sold at the shop and some will also be donated to the hospital. Ben chose a blue peanut butter cookie with chocolate chips and M and M's. We had the opportunity to make a trip to MeiMei's to pick up some cookies. They are delicious!

Ben has a check up later this week. We appreciate prayers for good counts, that we can stay healthy heading into winter and for wisdom in making decisions about exposure to germs.

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