Check in day for immunotherapy

Today we saw Dan’s oncologist who followed him pre and post transplant. She laid out the plan. 

9 days of Blincyto infusion in the hospital, then go home with home infusion therapy to complete a total of 4 weeks of continuous iv immunotherapy. He’ll have a bone marrow biopsy on Monday to check the amount of disease. It was 7% on August 22nd. 

Dan will basically go home with a bag of iv medication he will be attached to all the time but he will be able to work and go wherever. He’s hoping to go the Vikings game on October 24th with Maggie and people from his office. 

Then he’ll have two weeks of break. The cycle will be 6 weeks long. The doctor would like him to get two rounds of this. For the second cycle he will stay in the hospital for 2 days of infusion, then go home with home infusion therapy. 

After these two cycles the doctor would like to give him donor T-cell infusion to attack the cancer cells even more. After that she wants to enroll him in a clinical trial of CAR-T therapy. This is approved in children and young adults with relapsed leukemia. This would be done at a different hospital, likely not in Minnesota since they don’t have a trial here. When we pushed her to give us a time frame of how long he can expect to stay in remission she gave him an average of 8 months. 

During these days they’ll watch mostly for fever and low blood pressure and for neurological changes, especially confusion and trouble with gait and balance. 

Thanks for the outpouring of prayers from near and far. 

I wanted to include a photo of the day he came back from the 100 days of “exile” in Minneapolis.  He’s still looking and feeling that well today. He said maybe his hair is getting curly. What?!

Update

Dear friends-

It’s with heavy heart that I update this blog. Things had gone well, with the normal ups and downs, during the 100 days post transplant. Our friends and family from near and far provided more than 2500 hours of constant companionship to Dan. This is a miracle.

We came home and we got right back into life together at home. Dan got back to his favorite hobbies of woodworking and watching the Vikings. 

Unfortunately the bone marrow biopsy done right after the 100 days showed 7% residual disease, meaning there was still some leukemia present. He started a new oral chemotherapy in the hopes of eliminating the residual disease. 

On October 1st his routine blood work showed a very high white blood cell count (135k) which showed a relapse of acute leukemia. He got admitted into the hospital in St Cloud. It was a shock to us and to the doctor as well. He started oral chemotherapy and standard treatment to lower his white blood cell count. His counts came down nicely over 3 days and the plan is to meet the oncologist at the University of Minnesota on Friday October 4th and admit Dan for ten days of immunotherapy (Blincyto) infusions. This is an intravenous treatment which should attack the leukemic cells. Unfortunately they told us that this is not curative. It is unlikely to put him in a long term remission. This was such hard news to receive. 

We are going to do everything we can to fight but at this time we need to fight the way Christians fight, which (like Fr José told us) is by begging. So please, pray for a miracle.

We are praying to blessed Rolando Rivi.