I haven't updated in a while since all the good news. The number one update is that Sam is HOME from the hospital. No more nighttime vitals, no more hospital food, no more cream of rice.
What we thought would happen when Sam went home:
We thought Sam would continue to struggle with eating and nausea for a few more days, but that he would have quick improvement given the home-cooked meals and ability to grab a snack whenever it sounds good. We thought he'd gain weight and muscle with the eating and going on walks with Birkie. We thought it would snow and we might start getting out on XC skis on the local trails in Madison. We thought we'd go into the clinic once per week for a check up, and then go on living our lives. We thought we'd work during the day, and then in the evenings, sit on the couch and hold hands and watch TV and daydream about easier times ahead.
What actually happened when Sam went home:
Sam continued to struggle with eating but certainly appreciated home-cooked meals and requested a few favorites. Unfortunately, he has continued losing weight and we are both looking forward to getting some meat on his bones!! Right as the eating started getting better, something else cropped up. Now, while he's still working on gaining strength and weight, he also has a minor infection that requires us to go into the clinic daily for 3-hour transfusions. It's "minor" in that it won't affect his prognosis, but it's not "minor" in the sense that it has made him really uncomfortable, exhausted, in pain, and completely unable to resume to normal life as we hoped. If it's not one thing it's another, and Sam is ready for a break!
Instead of snow, we have rain here in Madison. Still, Sam's forced himself to get out on short, soggy walks with Birkie and I each day. Since he wakes up many times each night, he's really tired so he usually naps most of the day while I work from home.
Still, in the evenings, we sit on the couch and hold hands and watch TV and daydream about easier times ahead.
Today is the day where we take time to think about the things for which we are thankful. Ironically, even though I have SO much to celebrate this year especially, my mind is with those who are fearful today.
In spirit, I want to sit in the all-to-familiar hospital wing with families we’ve passed in the hall who are missing ‘normal’ today. I wish I could personally thank the nurses and doctors for foregoing their family time. I want to invite a homeless or refugee family into a warm home and provide a good meal. I want to hug those who are hurting today, who have a hard time feeling grateful just because today happens to be a holiday that asks us to do so. My whole heart is with these people.
Somehow, our story this year is different. In such a stormy year, our skies have started to lighten just in time for Thanksgiving. Sam got to leave the hospital on Monday. His progress is slow, but absolutely incredible. I am so thankful for his doctors and his nurses who did not give up on him when the leukemia came back. Who painstakingly studied every detail and symptom, and who saved his life. I am so thankful for my job and our medical insurance that makes us able to afford these doctors. I am so thankful for the physical support we have – a network in Madison, including a car, a home, family and lifelong friends.
I am thankful for Sam, who has taught me how to be brave, strong, patient, determined and hopeful.
And I am so incredibly thankful for you. If you read our blog, or commented on Facebook, sent us a card or a message, know that we have heard you and gleaned strength from your love. Know that you have helped us. I want to find each of you, put my hands on your shoulders, look you in the eyes and say thank you. Imagine me doing so now.
This world is rough and hard and disappointing and scary. Turns out our very own bodies can be that way too. But there are so, so very many good people in this world and although it may seem like we are outnumbered or hopeless at times, we are absolutely not. We are mighty and persistent. I am so thankful for you warriors today and so hopeful about the good we will continue to do in this world.
To you and yours, happy Thanksgiving, and so much love.
Initial results from Sam's biopsy yesterday are in. He has 2% blasts.
Sam is in remission.