Dan and Heidi Ursino family fundraiser
Donation protected
Heidi's update 7/15/23
The unknown continues to haunt us. Genetic testing came back negative. Their original thought was HHT (Hereditary Hemorrhagic Telangiectasia) a disorder of the blood vessels but it didn’t explain the tumors.
The third dose of chemotherapy was given yesterday. He has responded well with no side effects besides a couple sores in his mouth. This week we will do more imaging to see if further tumors have developed and evaluate the ones seen pre-chemo.
The headaches he suffered from for weeks are gone. He sleeps a lot but is easily woken. He has never been a morning person. That hasn’t changed while in the hospital. The team is picking up on it and comes a little later for neuro checks. He interjects in our conversations when we think he is sleeping. He laughed when I told him one of his bills was $923,515.01.
A lot of you have reached out because I said I am struggling. There is no other word for it. I’m struggling to sleep. I remain at his bedside and sleep on a cot. I wake up when his breathing changes, when he has to go to the bathroom, when he gets turned, when lab comes in and turns on every f*ing light. I struggle with being a present parent for Daniel. I know he and his friends are enjoying the freedom and Apple Pay but when I came home for one night, he slept with me “since the dogs were already on the bed”. He calls me for little things he would normally text me for. I won’t admit it to him just yet, but he is now taller than me. My parents and Rosa have been his chauffer for the various camps I signed him up for to keep him busy while I’m gone. I’m struggling with eating. When I leave his room, it never fails that a doctor comes in, someone comes to do a procedure or Dan needs help with something. Therefore, I don’t leave unless someone comes to sit with him. I eat what friends have thoughtfully dropped off for the girls and I to snack on. Box of lemon cookies, Dan’s favorite ding dongs and bottles of his lemonade. I run down to the Bistro when he is getting a bath. No, I haven’t lost weight as an old co-worker pointed out. But any weight I may have lost would be because of pain and heartache. Not a diet I recommend. I struggle with self-care. My phone has denied me multiple times because it didn’t recognize my face. I don’t either. My eyes are swollen and dark, my smile has disappeared, I brush my teeth and hair every once in a while. Some days I would rather snuggle with the dogs than take a shower when I have a few hours to myself. I struggle with moving, physically. I live in a 10 x 10 room. Most days I get in 1,500 steps, double if I go to the Bistro. I started walking in place and using his resistance bands for some arm exercises. Helps unknot me from this cot.
I struggle mentally because I don’t know what I’m going to do if I lose him. I can’t imagine life without him. He built this family and made me the person I am today. We have plans.
Thank you for all your continued support. It means everything. I often re-read your comments when I'm feeling defeated. We will get through this one way or another. For now, we live day by day
Heidi's update 7/7/23
The second dose of chemotherapy is running through his veins right now. He tolerated the first dose well with no noted side effects. His headaches are better. Today, he denies having one. It’s so hard not reading too much into small improvements or backslides. I look every day for some small glimmer of hope that that this treatment is working, that I’m doing the right thing.
Post transplant, steroids wrecked havoc on his mental state due to lack of sleep. He is again on high steroids. He’s restless when he sleeps. Doesn’t want to wear his CPAP. Fidgety. I see a lot of similar mannerisms I did back then. It’s difficult to get him to interact. He doesn’t open his eyes unless asked. He’ll answer yes or no questions with an occasional “sure” in there. “Are you in a hospital?’ Sure. All can be interpreted as “worsening mental status” in light of his recent health woes. I hold my breath with every Neuro check. But then he asks me for a kiss or snickers when he passes gas.
We don’t yet have a plan beyond three doses of chemo and then a one week break. A CT scan is planned soon to evaluate the number and size of the hemangiomas in his brain. That will be the determinant for whether chemo is working. I’m petrified. I don’t want the scan. Every scan has only brought heartache. I want to be ignorant for a little while longer.
I’m struggling both physically and mentally. Dan is fighting with all he has. Our kids put on a brace face but I know the pain they are in. We don’t know what tomorrow brings but the one thing we know is what an incredible army we have behind us. I’ve read every message, text and post. I have a long list of people who have donated Shared Leave. I normally dread getting the mail but then there’s a card from an old friend or wonderful co-workers that makes me smile. Glacier Peak Lacrosse fed my boy and shared videos and pictures so I could show them to Dan. The incredible coworkers who spoiled our children with a Kraken play off game. The gofundme, gift cards and Venmo; I’ll never be able to express my gratitude to those who have helped us financially through this difficult time. I have paid thousands into his medical bills and medical equipment for our home. Stroke recovery tools I would have passed over, I was able to purchase. We have been able to go beyond what is covered by insurance for specialized testing. It has also helped keep a roof over our heads.
It will take us months to write out all those thank you cards. It will be great physical therapy for Dan whether he uses his right or left hand. Maybe we can teach him to write bigger with his left.
Hi my name is Rona Hall, I am raising money for my long time friend/work husband, Dan Urisino and his family. Dan and I started working together in 1996 in the Harborview ER, part of the B team rotation. Chances are if you came to Harborview, Dan may have been your nurse, and he is one of the most compassionate, hilarious, passionate expert nurses we know.
This last year, Dan and his family have been on the medical rollercoaster. We all took a sigh of relief after Dan got his new liver in December of last year, and held our breath this spring when he suffered a stroke. He was recovering, and he had spent time relearning to walk and talk. He was home, and we again sighed. Then, we lost our breath again this past week. Dan’s wife, Heidi, recently gave the update below on Facebook. Please consider giving to Dan and his family, any amount big or small, helps. Please care for him, the way he cares for us.
The funds will be used for uncovered medical expenses and lost wages from both Dan and Heidi.
Heidi's latest update:
When Dan survived his liver transplant, all the teams involved in his care believed he had beat Hepatic Hemangiomatosis, a very rare disease with little clinical data or case reports. Follow up appointments, scans and labs showed a perfectly working liver. In April, he suffered a hemorrhagic stroke. Pathology showed tissue consistent with his liver and spleen. He bled because he had a hemangioma in his brain. This week, after a severe headache and trip to the ER, he now has 15 hemangiomas in his brain. They have also spread to his lungs, spine and new liver. After consults with Oncology and the Sarcoma team at Fred Hutch, our only option is treating these hemangiomas like cancer and starting chemotherapy. They are not malignant in nature, they are malignant in behavior. Our hope is to stop the further spread and decrease/kill the current ones. Their drug of choice has little side effects. There are many options to help minimize or prevent the side effects. He will stay at the University of Washington where he will receive weekly treatments and be monitored closely. His quality of life is our main concern. I chose to do this (with our children’s blessing) because I need to be able to look at them knowing I did everything possible to save their father. This is the third time I have been put in this situation. I have to believe God is giving us this option, albeit experimental, for a reason.
Organizer and beneficiary
Rona Hall
Organizer
Sammamish, WA
Heidi Ursino
Beneficiary