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. 

Day 58 - Doin' Great!

Hello all -
things are continuing to progress well.  Some of my many medications have dropped off of my list (down to 28 pills a day, which is much better than before) and I have even been given the green light to visit home once a week, which was totally unexpected and awesome.  I've had a ton of visitors and Veronica has been coming down with the kids pretty often, which has made this a lot less isolating of an experience than what I expected.  I don't have a ton of news or changes (which is good actually), but I just wanted to post so people weren't wondering.  Feel free to text or write.  I am working full time in these days so I am not able to pick up calls very often.  Thank you to all of you keeping me in your prayers despite my lack of updates, I really do appreciate it.  I'm more than half way through the exile now (provided there is no major negative change) and will hopefully be released back into the wild on August 22 (the 21st being the last day here), the Feast of The Queenship of the Blessed Virgin Mary.

Day 29 - Been pretty lazy blogging lately, but doing well!

Hey everybody, its been a while!
Things have been well, no major side effects yet, and as of yesterday, no more shots in my stomach to prevent clots!

Many many people have been here both to stay with me as well as just to visit, and there has been an interesting clashing of worlds.  Many of my family members have met various friends from CL and beyond and vice versa.  People I would never have imagined in the same room, as you can see from this example:

I've also had a chance to share quite a few meals with friends and family

and had some really great conversations with you all, for which I am always grateful.  My family has been able to come stay over a few nights so far (which is amazing) and I think they are coming again this weekend.  In the meantime, there seems to be some baseball fever in Saint Cloud this summer:

I wish I had more to update you on my medical situation, but I don't have much to say except things are going well so far and the doctors seem happy with my progress.  Thank you all!

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.

Maybe some answers tomorrow

Dan still has a cough and a runny nose. After a phone call where a certain nurse he is familiar with asked some more questions, (very politely of course), we got an appointment to see the transplant doctor tomorrow, May 1st to get evaluated. For now things are still on hold but who knows what tomorrow will bring.

Intro

This blog is a simple attempt to simplify all communication regarding Dan's journey through bone marrow transplant. We'll try to keep it short and sweet.

Just to recap-  in the beginning of December 2018 Dan was diagnosed with Philadelphia positive acute lymphoblastic leukemia. He completed 4 cycles of chemotherapy. His course was complicated by pulmonary emboli, neutropenic fevers and pneumonia. Of note, he had his first pulmonary embolism while he was watching Bohemian Rhapsody at the theater with his buddies but he was too busy to notice.

Dan came out strong and he is in complete remission now. Thank God! His hair and beard have grown back. He looks wiser due to the higher prevalence of gray hair. He is sporting the salt and pepper look. He has gone back to work, has been spotted playing pool at Howie's with Jon, Rich, Matt etc. and has almost finished a play house for the children. 

Due to his leukemia being aggressive (see Philadelphia chromosome positivity) he needs a bone marrow transplant to achieve cure. We were blessed to find a perfect match in his little brother, Andy. (Thanks Andy for being willing to donate your marrow even though Dan pushed you from the hayloft when you were small).

Now we are waiting for Dan to get the OK to check into the BMT (bone marrow transplant) unit at the University of Minnesota Medical Center. This is 60 miles away from our home. An upper respiratory infection has been delaying his admission. In preparation for transplant he will receive myeloablative total body irradiation, which means they are going to completely wipe out his bone marrow. He will have no defenses to fight even the common cold. 

Dan has some blood work on Monday 4/29 and his transplant nurse will check up on him on Monday or Tuesday. The tentative plan is to check into the hospital on Wednesday. Admissions can only happen Wednesday through Friday. 

We will post here as soon as anything changes. 

Thank you to all those who have been and are praying for Dan and for our family. Please continue to pray. We have incredible friends near and far. From the very first moment of Dan's illness we have never been left alone. This is a gift.