Thursday, June 12, 2014

Professor Matthew H. Hils, my blood brother

Professor Matthew H. Hils teaching botany at Hiram College.
Professor Matthew H. Hils, George St. Clair, and I are the three musketeers. We started the ibrutinib clinical trial at NIH at the same time. We decided we were eternally bonded as blood siblings. Dr. Matt was a botany professor. George was a retired counselor. I was a computer graphics technology professor. We kept tabs on each other.

Matt and I were diagnosed with 17p deletion, but our bodies responded to the experimental drug differently. Within months of taking ibrutinib (a.k.a. PCI-32765 and Imbruvica) Matt was in full remission. I just remember his favorite saying: "I'm about as happy as a pig in slop." We couldn't stop laughing. George and I called him our poster child.

I -- on the other hand -- have not reached remission in almost two years. When I voiced concern a year ago he said to me, “I am the hare and you are the tortoise. But don’t forget who won the race.”

CLL/SLL is not a stupid cancer like CML. I wish it were. CLL is a sneaky little devil and has a tendency to find another pathway, especially in high-risk patients. That is why researchers use the experimental oral cancer treatments to block the leukemia in different parts of the pathway.

Ibrutinib stopped working for Matt in the fall of 2013 and he was sent to The Ohio State University for another clinical trial with IPI-145, another oral kinase inhibitor. In April 2014 IPI-145 stopped working for him. Matt continuously reported his symptoms and his vitals to George and I so that we would have a record.

He was scheduled to fill the one slot in May for ABT-199, another inhibitor, which has been very successful in clinical trials so far. The drug manufacturer for ABT-199 did not give The Ohio State University a slot for May, so that option was closed for Matt.

He had to move forward to another plan – either a stem cell transplant (umbilical cord) or another clinical trial. Both required completion of a chemotherapy regiment, which would take him to July or August. A weeklong course of chemotherapy called R-EPOCH was administered beginning, Monday May 12, 2014.

Matt was to be released from the hospital at the end of the week and return for the next round on Monday, June 9th through 13th. Then he would either have the transplant or enter another clinical trial. He reported that this plan did not work out. He said he was having trouble with his strength and stamina and could not walk around the nurse’s station without panting. Fluid in his lungs prevented him from breathing deeply. Abdominal pain and some bleeding he said was probably because of a low platelet episode.

The next news I got was that Matt was being released to Hospice on June 3, 2014. He was supposed to email us to let us know how he was doing.

Tuesday afternoon, June 10th I could not figure out why I could not stop the tears from flowing. That evening I received the following email from his daughter:

Friends and family: 

This evening, just before 7:00 PM, my dad passed away peacefully in his home, his "tree house," surrounded by his children, family, his "Gorgeous" Gloria, and friends. We were talking happily around him, discussing his storming the Castle of all castles, and storming the gates of Heaven. (I trust we all know Dad's love and fondness of Billy Crystal's line in The Princess Bride: "Bye bye! Have fun stormin' the castle!") Just seconds after this, we realized his pain and discomfort had come to an end and that he was at peace.

Shawn and I cannot thank you enough for all of the love and positivity you provided our dad with during these last three years, and all the additional years of laughs and love you gave him as his friends and family. I don't think I'm alone in saying that my dad handled his cancer and treatments with a kind of quiet grace and bravery that was truly something to behold. Just yesterday, he was smiling at us, sneaking kisses on cheeks, and laughing at our very bad jokes. Not to be competitive, but I think he has set a high, golden standard for what an incredible person and father can become. 

He was a father to Shawn and I, and also to our friends and his students. He was a brother to Kathy, Linda, Sandy, Mary, Beth, and Dave, and also to all of his friends and colleagues. Dad was happily, blissfully in love with his partner Gloria. While we so wish that he had had many more years with all of us, Shawn and I know that my dad was happier in these last three years than we have ever seen him before. That is due in large part to all of the beautiful people and relationships in his life. He always saw teaching as his passion; being a father as his greatest pride and joy; and being a selfless, loving friend and brother as his honor.

We are all better for knowing my dad, Prof. Matthew H. Hils (November 27,1955-June 10,2014).

My heart is heavy, but I know Matt is all right. His spirit is alive and well. :-) I am dancing the Florin dance with tears in my eyes celebrating my blood brother Matt's life.