Luke’s journey with Neutropenia started before he was even born. From birth until he was 9 years old he struggled with many infections that put him in the hospital on many occasions making it difficult for him to be a kid. When he was 9 years old his doctor got him, and his mom Cate who also struggled with Neutropenia on a case study that would pretty much erase most of his infections letting him lead a much happier and healthy life. The case study they began together didn’t have a whole lot of information or data collected at the time on whether or not it would help either one of them fight their Neutropenia. Luke and his momma were willing to be a part of the study and had to go to the University of Michigan together to learn how to safely inject the medicine that he takes still today. The drug, called Neupogen is what is used for cancer patients after chemotherapy to boost their white blood cells back to normal levels. At 9, thanks to the study and Neupogen Luke was able to stay infection free for the most part and have a normal childhood. There were still infections periodically but nothing like before the drug.
Starting sometime in his 20s Luke was required to have yearly bone marrow biopsies done to make sure there weren’t any mutations in his blood cells. The mutations they wouldn’t find in his 20s during these yearly biopsies could potentially turn into AML Leukemia. So every year he would go in and take care of business, and every year just like the one before all was well.
Here’s where Megin shows up, and gets involved in the story telling.
Fast forward to the 30 year old Luke, just 5 years ago. He still was pretty healthy, and his doctor was very happy with his yearly test results. She thought it would be a good idea for him to get his blood drawn every 3 months in addition to his yearly biopsy just to keep watch for any mutations so that IF things started to change they would see it early and be able to move on treatment. He did as she asked every three months for the next few years and all was well. Sometime after, we think about a year or so the doctor asked Luke to have monthly CBCs (blood draws) to look even closer for those mutations, he was 34 I wanna say. Every single month he would go, and she would call and all was good. The blood draws were a bit of an annoyance to Luke but he always did them. He knew they were important.
Fast forward again to September 2018. Luke goes and does the monthly CBC. Test results came back with irregularly low platelets. Dr said not to get worried, this could just be a fluke or he could be getting a cold or just feeling not 100%. October 15th ish 2018 Luke goes in for the monthly CBC. Test results are in, a second irregular result again very low platelet counts. His doctor, now more concerned took Luke down a quick road of ‘worst case scenarios’ that absolutely horrified me but assured him this was all probably nothing and not to worry too much as his yearly biopsy was right around the corner. The biopsy was scheduled for October 22nd and we would have more answers then. October 22nd came and went, another biopsy in the books. Luke was a little more tired than normal and rested the whole day. His doctor said that she would have initial results the following day. She called the next day with results, all was good. However, they usually send a second slide off for closer testing and those results were to come back in a week or 2.
October 29, 2018 Luke receives a call from his doctor a little after 0800 and the second set of tests revealed a mutation in his cells. She asked to see us in her office as soon as possible to discuss the next step. Remember that worst case scenario? We are here. Fun fact, this day is our anniversary. We go on to have a fantastic dinner and enjoy chicken parmesan, just like our wedding day!
October 30, 2018 we meet with Dr. Stein and she goes over a boatload of information. She talks about what she believed was a mutation called MDS. The overflow of information washing over Luke and I that morning, left us with more questions than answers. Dr. Stein told us that the best place for us to go in the United States for treatment was to the University of Michigan where they specialize in Neutropenia and Bone Morrow Transplant. —Did she just say bone morrow transplant?! I feel like the record stopped. We were asked to wait to hear from Ann Arbor where we would be scheduled for our first consultation with the doctor who would work with us, and go on to perform Luke’s potential transplant. The entire time I was unsure if that was an actual diagnosis, the MDS. We didn’t know a thing at all about it. The whole time Luke is cool as a cucumber, naturally. Plans in action already in Ann Arbor, U of M Medicine called Luke later that same day to get our consultation scheduled. We were set to go in a few weeks to come. Longest 14 days of our lives.
November 15, 2018 the day has finally come. Luke and I, with his parents head to Michigan. We get to the appointment, and meet Dr Ghosh. We all like her, and she goes right after it. Talking about bone marrow transplant (BMT) within the first 3 seconds. All the information and details, odds of finding a donor match, hospital stays and primary caregivers...how far we live from the hospital, the transplant itself, a confirmed diagnosis of MDS. Then she slows down and explains MDS, and that if it continues to mutate will turn into AML Leukemia. In short, Luke’s bone morrow has stopped producing healthy cells. The fighter cells, the white ones that keep the infections at bay. Scary stuff. He needs this BMT, he needs to find a match. The odds are in his favor, and we are hopeful. There are good days and there are bad days so far. There is an army following us by way of friends and family who we love very much. This is our next great adventure, and we all are in this together. #teamluckeylucas
Thank you to all who gathered with us over these last 2 days to celebrate Luckey Luke.
Thank you for being our biggest cheerleaders and making these last 5 years worth the fight 💔 I spent the day racking up as many hugs and I love you’s as I could. I’m a hugger and it helps my heart.
Today was the saddest day of my whole life. My dining room table is filled with flowers and my house is now filled with the biggest void you could imagine. I will never understand why these things happen. I can analyze, I can ponder. I can be angry, I can be bitter or I can choose joy. I tell our kids that our days work out only in the way that we choose them to be. For Lucas, I am going to remember to seek out the beauty in everything I can and I am going to choose joy. I know that is what he would want for me, and for all of us. Today we laid to rest my best friend, my sweet Lucas…he was and forever will be -everyone’s favorite-
Patients and caregivers love hearing from you; add a comment to show your support.
Help Luke Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Luke's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
