Hi everyone!
We wanted to update you. If you've been following our Instagram, you may already know what is happening. If you do not, here is what's happening.
On Jan. 28th, we met with Luke's entire care team. We had been waiting on this last meeting to “wrap things up” so we could head to Mayo Clinic/Phoenix for Luke’s radiation treatment.
Unfortunately, it was very clear that this option was not sustainable for Luke or our family. There were many factors that lead to this decision but ultimately, it came down to the complexity of Luke’s case.
Due to Luke’s HLH (), it complicates things to the point where we have to have a plan in place constantly. Luke would not have access to the home environment had we gone this route, he would have had to be admitted, to ride an ambulance EVERY morning and afternoon, he would have been stuck HAD something happened with him and we would have had to fly home to San Francisco.
We are thankful to the Phoenix children’s for their time and efforts and thankful to Mayo for being willing to take on Luke’s case. Luke would have been more at risk of something bad happening AND being away from our family, friends, and support system.
The entire reason we advocated for proton therapy is for the benefits. The fact is that Luke’s recovery would have been smoother. Luke would have had fewer side effects and would have had less inflammation, something we constantly worry about with his blood disorder.
So… you might be asking, what now?
Well, we stay in San Francisco. We stay close to our care team with access to his medications, doctors, specialist who know his case in and out.
We are moving forward with Photon therapy, a similar but less advanced model of radiation. While we don't have guarantees for Luke’s ability to walk again, his ability to hear fully again, his body doing it’s job properly or something happening. We are thankful.
We know we are in good hands and we trust we made the right decision for our son. We trust we made the right decision for our family. Luke’s statistics are at 50% with photon - a vast difference of 75-80% with proton… We just want our baby to be okay, for him to have what he needs.
We plan to use the funds donated to cover bills, take Luke out (since we will be outpatient as long as possible!) to a ball game, the beach, etc., for gas and food. We still don't have a plan for us yet… we are just going to try and get through these next 6 weeks as smooth as possible.
Thank you to all who have supported us, to those of you who have prayed for us, messaged us and just sent us so much love. THANK YOU!!! 
