Help Dale fight lung cancer & pulmonary fibrosis

Thank you to everyone that donated and made it possible for my dad to get an Inogen portable oxygen concentrator. It's been a game changer and has created more freedom for him to go places or do things without worrying about tanks putting a time limit on how long he can be away from home. I'm back with dad's permission to share some updates about how he's been doing since the original post and with a new goal

I'll start with the goal. When my dad was first diagnosed with lung cancer (July 2021), I asked him if there is something he's wanted to do but hasn't had the chance to. He said he's always wanted to ride a train through Canada to see the nature and wildlife. Since then it was in the back of my mind and I spent time figuring out what it would take to make this happen. It's also one of the main reasons we needed to get him an Inogen. After hours of research, planning and talking to travel agencies I found the perfect short trip from Vancouver to Calgary through the rocky mountains. In November we suprised him with the news that he'd be going with my mom, Alicia, Austin and I in the beginning of May. He was excited but has had some concerns about whether or not he'd be able to go since his physical ability and strength has been declining. We also found out in January that due to his lung function it wouldn't be safe for him to fly. This meant we had to find another way to travel to and from Canada. Luckily we'll be able to take the AMTRAK train, however now a 3 hour flight has turned into a 36 hour train ride. On the train there are regular coach seats ($600 round trip for both of my parents) or small rooms with beds ($2100). He insists that he'll be fine in coach and doesn't want to spend that much money for a room. So I'm back asking for a little help to upgrade them to a room instead. We want to make sure he's as comfortable as he can be and not worrying about the financial side of it to make it an amazing trip!

UPDATE:
Dad was feeling better throughout the fall as his hemoglobin levels stabilized and were back in normal range. He had an MRI of his brain completed in November, they found that there were 2 spots and the cancer had spread.. not the news we were hoping for. He had a one time radiation treatment to slow it down and would do a follow up MRI again in 2-3 months.

In December he had a 3 month follow up CT scan of his lungs. The cancer in his lungs appeared to be stable. So he'll have another CT scan done in 3 months to check again. This was good news! The long winter and cold weather was difficult. He started going to pulmonary rehab and that helped get him out of the house. But it caused him too much discomfort and he wasn't able to complete it.
In January he went to see a doctor at the U of M about his lungs. The doctor advised that he shouldn't fly due to the change in elevation and how that impacts lung function. He also started a new inhaler to see if it would help with his breathing. We'll follow up in 3 months.

The end of February he had another MRI of his brain. There were more spots where the cancer had spread and he needed to do another radiation treatment. That same week he also had his lung CT scan, it showed that he had new spots in his lung and it spread to his right adrenal gland. We discussed treatment and my dad's willing to do chemo again. This time we are closely monitoring for side effects and doing what we can to keep him feeling better than he was last summer.
In March he had radiation on his brain and his first round of chemo. We were able to go to a few Friday fish fries while they lasted. This week he will be doing his 2nd round of chemo and will do his 3rd round after we get back from vacation.

ORIGINAL POST:

I’m Abbey, anyone that knows my dad Dale Leikvoll Sr. knows how much he dislikes social media. He was skeptical about sharing personal information about his life and asking for help, but gave me permission to make this and share what's been going on. He is always there to help people when they need it, and I want him to see how many people truly care.

My dad spent many years juggling working full time, living on a cattle/ hobby farm, and raising his 7 kids. In the late 90's, he found out he had Rheumatoid Arthritis and has been on various medications to manage it. In the process he developed mild interstitial lung disease that causes scarring in the lungs, which is referred to as pulmonary fibrosis. His RA was well managed and this wasn't concerning (yet). He's also had a few surgeries, but overall his health has been okay.

Dad had been thinking about it for years and finally decided to retire in February, 2021. In March, 2021 he had his annual physical and they ordered a screening CT scan of his lungs due to his history of smoking (he quit in 2016). The scan showed a nodule in his lung and instead of waiting for his next annual exam they wanted to check it in 3 months. After enjoying only a month of retirement, there was now the lingering unknown that he could have cancer. When a repeat CT scan of his lungs was done in June it showed that the nodule had grown and needed to have it biopsied. In July he had the biopsy, which confirmed our greatest fear- it was small cell lung cancer. About 13% of lung cancer is small cell carcinoma and it is the more aggressive of the 2 types. Thankfully it was caught early, less than 5% of small cell lung cancer cases are found this early.

They attempted to surgically remove the nodule, during the surgery they saw it had adhered to the chest cavity and they weren't able to remove it. It was difficult for my Dad to deal with the long healing process when it wasn't successful. Last fall he went through chemotherapy and radiation treatment. Radiation was particularly hard on him, it caused some miserable side effects - narrowing in his esophagus which made eating a challenge and he needed to be hospitalized on Thanksgiving. Also, it worsened the pulmonary fibrosis (scarring) that was already in his lungs.

Dad successfully finished treatment in November and the tumor had shrunk. We were hopeful- because in February 2022 at his 3 month follow-up scan it hadn't grown and there weren't any new nodules. The pulmonary fibrosis had gotten worse though. In March he was having shortness of breath and needed antibiotics for pneumonitis (lung inflammation). He got an order for oxygen to use at home as needed with activity. He also had prophylactic radiation on his brain, to prevent the cancer from spreading there if it were to come back.

In April, he saw the pulmonologist (lung doctor) and there was a decline in his lung function test from the pulmonary fibrosis. Next came his 6 month follow-up scan in May. The news wasn't as positive this time, there was a new nodule and he had to have a biopsy done. Our greatest fear again.. the small cell lung cancer was back. Dad made the choice to keep fighting, he started chemotherapy and immunotherapy this summer. Initially things seemed to be going alright, his main side effect was fatigue and it felt manageable. He only wore oxygen occasionally, by the end of June he needed to wear it more and they held his 2nd round of treatment for suspected pneumonia. After taking antibiotics and higher steroid doses he was feeling better.

Mid August he needed to have a blood transfusion because his hemoglobin was low. The end of August he started having severe shortness of breath and low oxygen levels when he was walking with his oxygen on. When it was hot and humid outside he also struggled with being able to breathe and spent most of his time inside the house (thankfully my parents got AC at the beginning of the summer). The end of August, he needed another blood transfusion along with his chemotherapy treatment.

Next was September, 2022 - by far the worst month Dad has had. He needed to use a very high level of oxygen and wasn’t able to walk very far without getting severely short of breath. Dad was hospitalized in Little Falls, at that time his hemoglobin was 4.6- a life threatening low level of blood in his body. He underwent blood transfusions, felt better and discharged.

Later that week dad’s hemoglobin level was low again, down to 5.8. He was hospitalized in St. Cloud for 2 days. He underwent blood transfusions and testing to be sure he didn’t have any internal bleeding, he didn’t have any bleeding. It was thought his blood levels were so low due to the chemotherapy he has been getting. There was also a chance the cancer spread to his bone marrow. The next week he had a bone marrow biopsy, which thankfully showed no cancer! Dad has a follow up appointment this week to see what the next plan is for his cancer treatments, likely he will have a few more rounds of chemotherapy and change the type so that his blood levels stay stable.

Dad’s hemoglobin levels have been increasing and with that he has been feeling much better. He’ll continue to be dependent on oxygen, the goal is for him to need a lower setting and keep his oxygen levels close to 90%. He isn’t very fond of this because the oxygen tanks are fairly heavy and awkward to carry around. When leaving home he has to make sure he has enough oxygen tanks with him.

We had previously looked into an advanced portable oxygen concentrator called Inogen. When I called to talk to them we found out his insurance won’t cover one since he’s already gotten oxygen supplies with another company. To get the G5 with a lifetime warranty, double batteries, charger and car charger it’ll be about $3,600. This will be life changing for my dad. Instead of struggling to carry 7-8lb oxygen tanks the G5 is 4.7lbs, smaller, lasts longer and has a waist carrier that can be used with it.

It’s been an emotional roller-coaster for our family, especially my Dad. He has had significant life changes in the past 15 months.. he was always the caregiver, very independent and active. There aren’t words to describe how challenging it has been to see him struggle and I can’t imagine how he has felt. We want to make sure we do everything we can to help him live life to the fullest. Having an Inogen concentrator would help him do that, he’d have more independence outside of the house without worrying that his oxygen tank will run out or needing to carry them around. All of the money donated will go toward buying one for him and decreasing my parents’ unknown financial burdens. 

Please donate whatever amount you’re able to, it will be greatly appreciated. I want my dad to be completely baffled with how much we’re able to fundraise for him through social media and the kindness of people, whether they personally know him or not.