Bitter sweet

as Vero posted, I finally was able to leave my room and actually go outside today.  It’s a feeling that’s hard to express after being in that room tied to a pole for multiple weeks.  I am very happy and grateful for all the generosity and kindness I have received in this time both for the people that came to stay with me, as well as those who stayed with my family.  With that said, I am saddened that one of my great friends is leaving tomorrow, and so is the rest of my family.  The girls forced her to make this crostata today

Olivetta, thank you for being here for us.  You will be dearly missed!

Day 16 - breaking free

After 21 days in the hospital today Dan got discharged from the BMT unit and this what he looked like

Oh yeah! We are all so happy. We are grateful to the staff of the BMT unit at the U of M Medical Center for the excellent care and to Dan’s family and friends who never left him alone by visiting, calling and praying for him. Thank you to all the day and overnight visitors who made it possible for Dan to never spend a day or night alone. Thanks to all these guys’ wives who made it possible for their husbands to spend the night at the hospital. Many of them have small children who don’t sleep through the night! Dan’s room was an office, a living room, a bedroom, a movie theater and a church. Thanks to the priests who came to celebrate Mass on the tiny round table. 

Now Dan has moved to an apartment nearby and we look forward to each day until August 21st when, God willing, Dan will get to come back home. A special thanks to Dana and Stella who have been coordinating my life and all the shifts to make sure Dan was not alone. 

Day 15 - ready for discharge !

Dan’s white blood cell count is up to 8 thousand. He’s ready to leave the hospital tomorrow as long as the apartment we will be renting a couple of blocks from the hospital and the clinic has been vacated and cleaned. Otherwise he’ll stay one more day. This is so exciting and such great news.

Day 8-11

Dan is doing pretty well all things considered. The doctors are very pleased with his progress. His infections are responding to the antibiotic treatments. He is dealing with unpleasant but expected side effects of radiation and chemo. He still has very painful sores in his throat which make it challenging to swallow. However this has not prevented him from enjoying home cooked meals, chipotle and punch pizza. He continues to receive visits from many good friends and family members. He is able to work. He is doing some physical therapy to avoid losing strength and endurance. He has turned down massage therapy cause who needs to relax when you have a wife like me, so calm and composed. The doctors told us to prepare for a possible discharge from the hospital by next weekend. We did not expect this but of course it would be great! When his blood counts start rising they will rise sharply. For now he’s still neutropenic and needing platelet transfusions occasionally. Thanks for the continued prayers.

Day 7

Transplant was a week ago! Dan is feeling well today. He has been working most of the day from his new office.  He has shaved most of his beard in preparation for a hairless near future.

Days 5 and 6

Not much has changed over the weekend. Dan’s mouth is still quite sore, however he’s been able to eat a bit more since the nausea has improved. We visited him today. We brought him some pasta and crostata from home and we ate lunch together. Fr Pietro came to say Mass. Dan read the kids a chapter from the magician’s nephew and then we watched some cartoons together. Sometimes we forget we are in the hospital and it feels like we are in our living room.

Day 4

Dan had a rough night. He spiked a fever, had a chest xray (routine when you have a fever), a CT scan of his sinuses; multiple people came in and out during the night. The lining of his stomach, mouth, throat are injured from the radiation. He has not been able to eat much at all. He also still has a sinus infection so a squad of ENT physicians came in and shoved probes up his nose and swabbed it to check for infection. Dan's nurses are trying hard to manage his symptoms.

Days 1, 2, 3

Dan is doing ok. His white blood cells count has dropped as it was expected. Today he had the first day of two of chemotherapy. This is standard to decrease his chances of rejection. He lost his appetite and he’s receiving antibiotics for a couple of infections which are not great but nothing to freak out about. He continues to receive daily visits from friends from near and far. Fr José said his usual 15 minute Mass in Dan’s room. Dan is now neutropenic so he cannot have any sick visitors or visitors with sick contacts.

Day 0 - transplant day

We are waiting for the transplant. It will probably happen sometime around 7pm.

Here is Dan on his new birthday. The infusion will last about one hour. 

Update: the transplant is all done! It went well!! Happy birthday Dan. 

Day -1

Quick update, I had a beautiful day today. The family came over for a few hours today, and we had punch pizza for mother’s day.

Father Daniele came to perform confession, anointing of the sick and communion.

All the radiation treatments are done now, transplant is scheduled for tomorrow.  I’ll try to keep everyone posted.

Day -2

Hey all, Dan here posting under Vero's account.  I'll figure out how to post as myself at some point.
Not much to update on at the moment.  3/4 of the way through radiation at this point.  Fun fact: while receiving Total Body Radiation, the staff will play "More than a Feeling" in a loop upon request.
I'm feeling more or less normal overall, though the radiation has caused some skin discoloration

Additionally, as some of you already know, Pietro picked up very early on what my real plan was with this cancer thing.  Having recently watched Captain America shortly before my diagnosis, he noted that I clearly was trying to acquire super human powers, first mimicking the origin story of Captain America

And then Iron Man

More to come...

- 4 and -3

May 9th and May 10th
Dan has started TBI (total body irradiation). He’s tolerating it fairly well. He says he has some minor stomach issues and he is told he is “red”. Maybe he looks like he does after one day in the sun at the beach. He’s gotten 4 out of 8 treatments.
In between TBI treatments he is enjoying his friends’ company and junk food provided by those very friends. His brother Andy has started his shots to stimulate his bone marrow to produce more cells so he can give them to Dan in a few days.

- 5 ; check in

Last night we had a simple dinner together. The kids insisted on eating outside even though it was cold for my standards. Dan finished reading Prince Caspian to the children. Pietro did not find it interesting at all and was snoring after a few minutes. The girls were feeling sad since it was the last night of Dan reading them a book at home for a while. (And yes, I think the ficus in the background has died from lack of sunlight. Thanks MN!)

This morning was very sad as the girls said goodbye to Dan. We trust they will be taken care of and will be able to experience joy in the midst of these hard times. Dan and I drove to Minneapolis. Here we are a few moments before walking into this building for a new adventure.

Now we are at the hospital. The game is on. Dan is starving as he has been fasting since last night and he cannot eat until he gets his central line placed. My main complaint is that there is no HGTV on the list of TV channels.

Update- the Hickman catheter is in. No problems. Radiation twice a day for 4 days starting tomorrow.

May 8th- go time

It’s official. Dan will check in on the BMT unit at the UofM medical center on Wednesday May 8th at 8:30 am. He’ll have a Hickman line placed at some point during the day. This is a central venous line that will allow him to get all the infusions he needs (chemo, Andy’s bone marrow, blood products, antibiotics ) and the nurses will use it to draw blood without sticking him with a needle. This line will stay in him for 100 days more or so. Radiation will start on Thursday, May 9th. Transplant is set for Monday, May 13th.
One foot in front of the other. Let’s go!
Veni Sancte Spiritus. Veni per Mariam.

Check in next Wednesday

Today Dan and his big brother Jeff went to meet with his doctor at the UofM and he was told he should be able to check in for his transplant on Wednesday May 8th. This is a tentative plan. By then he should have completely recovered from his cold. That’s all for now. Please continue to pray.