Cole’s Story

Site created on November 4, 2020

Cole was diagnosed with high risk pre b-cell ALL (acute lymphoblastic leukemia), CNS negative, on 10/27/2020 after several weeks of fatigue and pain in his bones.  He started treatment on 10/28 at Nationwide Children's Hospital and this is his journey.

Cole's Army Facebook group: https://www.facebook.com/groups/362744021687346 

Newest Update

Journal entry by Mandi Kuhlman

😮‍💨🙏🥲🥳That sums up my reaction this week following two weeks of thinking Cole may have relapsed.  His monthly labs two weeks ago showed a huge drop in platelets (following a slow trend lower), well under the low side of the normal range, which can be an early indicator of relapse if leukemic cells are crowding the bone marrow.  When his doctor came back in with his lab results, you could tell she was extremely nervous and worried, which only added to our concern.  We left there not knowing what it really meant and a two week wait to recheck…  either give his platelets time to recover from whatever caused them to be low or enough time to see them and his other numbers further indicate a relapse.  Talk about a long two weeks of PTSD (and lots of praying) for our family!!  Fast forward to Tuesday, his doctor called mid-afternoon and said his platelets rebounded and she was pleased with all of his other counts, praise the Lord!  She called around 3 and told me she had been clicking his chart often since her reminder popped in at 8:30am; she was as anxious as we were. We aren’t really sure what caused the drop, but hoping it was something viral he didn’t show symptoms of or just a one off scenario that never happens again!
 
Wednesday Cole started his second year of preschool, and it’s not lost on us how lucky we are that he is here, healthy enough to go to school with no major worries and we pray it stays this way.  There are a lot of unknowns that could happen, relapse, secondary cancer from all the chemo he had, or the long list of late effects from the chemo, but for now we are trying to focus on the present and enjoy each day, even his moody ones, counting each day as a blessing. 🧡🎗️
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