Counting Our Blessings

December 6th, home from the hospital.

This update is long overdue. Kenny was released from the hospital on December 6th. There was a steep learning curve and adjustment to all the new things: tracheostomy care, feeding tube and a medicine/vitamin schedule that required a color coded spreadsheet. 

I’ve experimented with all the blended food combinations that will work in the feeding tube. Beef liver. Check. Bison, broccoli sprouts, pot roast. Check. Check. Check. 

I was pretty concerned about whether I was up to the level of care that Kenny would need at home. Claire and I attended the tracheostomy class and sat wide eyed at the nurse casually explaining what we should do if different scenarios happened. All the scenarios seemed pretty bad to us but we shook our heads and agreed like this was no big deal. They said "you'll do great" and sent us on our way. There is no training like on the job training. For the most part it has been fine save for one harrowing evening when the stitches popped out holding one side of his trach in. The after hours nurse instructed me to tie string to the right side of the trach and tape the string to the back of his neck until I could bring him into the office in the morning and have new stitches put in. I used yarn for the job. Good thing I'm crafty.

The pathology report came back and was overall good news. I really don’t know how Kenny was making it up to surgery. The tumor that they removed in the transplant bone was roughly the size of a plum. While it had completely invaded the transplant bone they placed in January, it had not invaded the upper jaw. His lymph nodes were negative and the margins that they took in the throat, base of tongue and upper part of voice box were negative. It was, however, positive for perineal invasion, which is when cancer invades and spreads along the nerves. 

Now comes the decision making. Cancer round two, returning so quickly, puts you in a gray area as far as treatment options. He does not qualify for chemo because at this moment they’ve removed the cancer. They cannot treat it with chemo if there are no cancer markers or tumors to measure. We have decided to do immunotherapy in an effort to keep the cancer from returning. Radiation round two is controversial on the best of days. You will find as many people that tell you it’s crazy to do it again as you will that tell you without question you need to do it again. There is a 1 in 5 chance that if you do it again you have very serious complications. We met with the radiation oncologist three times. He is an amazing Dr and played out all the scenarios with us. I have never met a Dr who so willingly spends so much time with a single patient talking through things and considering the impact treatment has on the patient now and down the road. Ultimately the decision is Kenny’s to make. He’s decided to move forward with radiation again. 

After Christmas he will start speech therapy and I’m praying will be strong enough to work towards getting off the trach and breathing without it and hopefully talking. I miss his voice so much. 

"When I'm worried and I can't sleep I count my blessings instead of sheep"

There are many hurdles ahead. But for now we are counting our blessings and praying for wisdom and and the grace needed to face what may come. 

To all of you that have supported us and brought us food and offered kind words of encouragement, I pray the Lord blesses you this Christmas as you have blessed us. ❤️

Hail and blessed be the hour and moment in which the Son of God was born Of the most pure Virgin Mary, at midnight, in Bethlehem, in the piercing cold. In that hour vouchsafe, I beseech Thee, O my God, to hear my prayer and grant my desires through the merits of Our Savior Jesus Christ, and of His blessed Mother.

Amen