Meet Luke

Feb 11, 2017

We have a very unique opportunity to get to know and follow one brave little Friends of Karen child and his family. Luke just turned 5 years old in December and is currently in Pre-K. His mom, Nicole, is a teacher, his dad, John, works in sales, and he has a little sister, Grace, who is just a year and a half old. Luke and his family live in Rockland County, NY. They are a happy, unremarkable family, but for one thing… Luke is about to go through a bone marrow transplant (the 2nd in his short life).

Days 17-20

Mar 27, 2017

We watch the lines, we wash our hands until they bleed, we wipe down EVERYTHING that comes in contact with Luke. We are careful!...because we have to be. We are petrified of him catching something...anything. He has a white blood count of ZERO.  We watch his broviac site with eagle eyes to make sure it looks the same. We were a little worried when it looked a bit red. A line infection is terribly dangerous. The doctors are always checking it. They believe it was just irritation from the CHG.

Days 15-16

Mar 24, 2017

The last two nights Luke was complaining of being itchy. The doctors gave him Benadryl. Luke has never had any problems with Benadryl but now it seemed to cause him problems sleeping. He tossed all around the bed and tried scratching into his broviac site. The conclusion was finalized as a reaction to the HCG. We had to use the wipes all over at night and there was an HCG patch on his dressing at the site.  The dressing was changed to one without HCG and we now have to use an antibacterial wash instead of the wipes.

Days 12-14

Mar 22, 2017

How could you not smile when you wake up to a little voice saying "cock-a-doodle-doo?" Despite the fact that Luke doesn't feel well he always wakes up with a smile on his face. He is starting to develop sores from the mucositis. While Luke has continued to eat a bit despite the nausea, he can't even get a sip of water down now. The nurses say that certain things may have a different taste. Nurse Chrissy came up with a great idea. Those of you who know Luke...know what a big deal this is (Luke only eats certain things and he is VERY particular!).

Days 9-11

Mar 20, 2017

Weekends in the hospital are always a bit sad. There is something about the weekday hustle and bustle that makes everything come alive. There was a lot of back and forth with the two little ones that brought on welcome distraction. Luke enjoyed "Dad time" and lots of Star Wars games and conversation. While the girls spent time playing babies and giving lots of tight squeezes. The doctors say Luke is in the  "honeymoon" phase. It did feel that way. He continues to throw up but, overal, he was in good spirits. He has accepted the challenge and taken it head on.