I received a card in the mail today from a friend of a friend of a friend. I have never met this person, but God’s timing is shown once again. In that card she sent a prayer:

“May today there be peace within you. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing that you are a child of God. Let His presence settle into your bones, and allow your soul the freedom to sing, dance, and to bask in the sun. It is there for each and every one of you.”

Luke and I had a call today with Dr. Winters. She and Dr. Kohler discussed Luke’s treatment and path to transplant this morning. Looks like we have not yet graduated from the ONC team. At this point, Dr. Kohler is postponing Luke’s transplant for another month due to his positive test for flu. Huge blow. Docs have to be 100% sure the paraflu has cleared his body before they start the conditioning chemo for the transplant and risk serious complications. With this extended time off of chemo, Luke is starting 2 other chemos to make sure his leukemia stays under wraps for the time being. Major blow. One is an IV drip 5 days in a row given to him in the transfusion clinic center at Children’s and another chemo given orally for 28 days. We are thankful Luke will not have to be in-patient for these treatments.

We have 100% confidence that Luke’s team is making these very large decisions keeping him safe and leading him to cure. Freedom. Two major goals that are in our sights, but not quite as soon as we have been working towards. Fucking leukemia. Another goal that I know is a HUGE blow to Luke (and to me) is the possibility of him not getting back to KU this fall. And when I say KU, I’m not worried about him obtaining a degree. That is the least of my concerns. I want him to get back to KU-Lawrence to the place and people he loves (part of that being his studies). Although this is still not out of the question at all, we are on the border with a timeline. I’ll do everything I possibly can, in any way, to get him there.

So, we will continue to keep taking steps forward. We will keep smiling, laughing, crying, and EATING! We will persevere. ZERO doubt about that.

Buckets of blows but lots of confidence,

Suz