Not The Answers We Wanted

It is hard to write this update today as we have answers, but they aren’t the answers we were hoping for. I promised to keep everyone updated as we learned more about what is going on with Luke so here is what we have learned.

Last week Luke had a follow-up appointment with his oncologist after being discharged from the hospital the Friday before. I wasn’t able to attend as I had to work at my job and my internship so Luke had to go alone. His doctors had the results of his biopsy from the lesions on his spinal fractures. The lesions clearly showed that they are related to the leukemia. This came as such a shock not only to us, but to the doctors as well because there has been no indication of relapse or rejection in Luke’s blood work. They said that this is a rare and unusual type of relapse.

Since then he has had a bone marrow biopsy to see if the marrow is involved. Luckily this showed that it is NOT involved meaning the stem cells are doing their job there. We are still trying to figure out what all of this means. It is such a rare and unusual thing that the docs are still determining the best course of action as it isn’t something they have seen before. Hopefully we will know more about the treatment options after his follow-up appointment this upcoming week.

As if dealing with all of this wasn’t hard enough, we have more mountains to climb. Luke has been on oral steroids to help with a rash he got from a small flare up of graft versus host disease earlier this year. Being on these for such a long time has caused his body to become resistant to insulin resulting in drug-induced diabetes. His blood sugar levels are about 3 times what they should be. This should hopefully reverse itself once he is tapered off of the steroids.

For now he has to test his blood sugar levels a few times a day and I have to inject him with insulin twice a day (not going to lie, I find this part fun). We also need to be conscious of what he is eating. The steroids he is on make him ravenous so he constantly wants to be eating. Prior to this he would snack on crackers and other carb loaded snacks, but now we need to watch what he is eating. We are doing our best to have more low carb/ sugar options for him for snacks (ex. veggies, eggs, nuts, fruit, cheese, etc.). This is a huge lifestyle change for us. If anyone has any tasty and filling snack/ meal ideas that may help we would love to hear them.

As many of you know, after we discovered the fractures in Luke’s spine and hips we had to make the tough decision to cancel our vow renewal this summer. We hope that this will merely be a postponement, but right now we are taking things one day at a time and trying not to get too far ahead of ourselves. Right now the most important thing is figuring out how to make Luke healthy again.

We appreciate everyone’s support, love, prayers, positive thoughts, etc. Please be patient with us while we navigate this news. It has been hard on us as we were so excited for this year and to finally start getting back to normal. If anyone is looking for ways to help us, right now all we need is love, normalcy, and maybe some healthy meal options.

I will do my best to keep you all updated and answer your questions, but our lives are hectic so please be patient with us.

P.s. Happy Fur-Father’s Day to my incredible husband. Penny absolutely worships you and so do I

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