So I suppose I should start at the beginning for those of you who aren't familiar with how we got here. It's been a long six months, so sorry if this is a little lenghty.
One day in the summer of 2020, Mitch and I decided we wanted to have a third baby, even though at times, both of us were certain we were done with two. That decision was probably one of the best choices we ever made. We started the IVF process again (which we did with Ruby and Fletcher) and Mitch had to update some routine labs. They were just a little off (white blood cells and platelets were slightly low), so we followed up with his primary doctor in Bismarck. The labs were repeated and looked like they were improving, so it was thought he just had a virus and we would follow up in a month. We decided to move forward with IVF since I was in the middle of a cycle. His labs were repeated 1 month later and his WBC and platelets were lower again, but still not by much. That bought Mitch a visit with the specialist and a bone marrow biopsy.
On November 23rd, we got the call that flipped our world upside down. Mitch was diagnosed with B-cell acute lymphoblastic leukemia. This news came just two weeks after we found out I was pregnant.
We were referred to Mayo and had our initial consult early December. A repeat bone marrow biopsy confirmed the diagnosis. His doctor was in shock because Mitch was COMPLETELY asymptomatic and said that it was the earliest he had ever seen it diagnosed. He guessed that Mitch would have been very ill in 1-2 months, given how fast ALL typically progresses. He also said that this was a great opportunity to get ahead of this and start treatment while Mitch was still feeling so well. After discussion of options, we decided to have Mitch proceed with the pediatric chemotherapy regimen, which has more success, but can be more intense.
So on December 14th, Mitch was admitted to Mayo for his first round of chemotherapy, which is a 28 day cycle and completed inpatient. Unfortunately, due to COVID, Mayo had a zero visitor policy at that time, so I had to send him off alone. This was one of the hardest things I have ever had to do. And unfortunately meant Mitch had to spend Christmas and NYE alone in the hospital away from his family. But he did amazing. He stayed positive, had very few side effects, and even rode a stationary bike they put in his room over 10 miles a day. Both his team and I were in awe of him.
He got home January 14th. His homecoming was bittersweet. He made it just in time for Fletcher's second birthday, but we also found out that not all of the cancer cells were gone. The majority of ALL patients will be in complete remission after the first cycle. He was in what is technically called MRD (minimal residual disease) positive remission. This means that they did not see any of the cancer cells under the microscope, but the MRD test (which was only developed about 5-7 years ago) which can detect 1 cancer cell in 10,000 cells ("needle in the haystack"), was still positive.
His doctor consulted with a couple other specialists around the country, and it was decided to proceed with the next round of chemotherapy, which was a 50 day cycle. They were fairly confident that this would get him MRD negative. Luckily, he was able to complete this cycle at home. However, this one hit him a little harder with some nausea, decreased appetite, fatigue and needing some transfusions. But again, compared to how sick some people get, we had to consider ourselves lucky with how well he tolerated it.
So now came the fork in the road. Although the second round significantly decreased his MRD percentage, he was still positive. This meant he was showing some chemo resistance, and further chemo was not the way to go. He was switched to an immune therapy medication. He had to be inpatient for 10 days when starting this medication to monitor for side effects. This time visitors were allowed, so me, the kids, his mom and my mom made the trek to Rochester with Mitch. This was a 28 day, 24/7 infusion, so he had to wear a nice fanny pack and couldn't drive due to risk of seizures. He also had to have someone with him 24/7 due to this risk. We are so thankful for family that came, as I was still working. And luckily, he had literally zero side effects and seemed like his normal self again.
On May 5th, we FINALLY got the news we had been waiting for. Mitch was in MRD negative remission. NO CANCER CELLS! We were so used to bad news, it was hard to believe the good news. But the story doesn't end there. Because he remained MRD positive after chemotherapy, his risk of relapse is higher. So that brings us to where we are today, Mitch's stem cell transplant. This is to get him long term remission. This is probably going to be the hardest and scariest part, but we know it's what he has to do, and we have complete trust in his team here at Mayo. On June 14th, we temporarily relocated to Rochester (kids and all) and will be here through early October, as Mitch has to stay 100 days post transplant. This means baby #3 will be arriving here as well. He was put through the ringer for pre transplant testing, and they said he is as healthy as can be going into this. He has been admitted since June 18th for pre transplant treatment which includes high dose chemotherapy and total body radiation to completely get rid of his own bone marrow. Transplant day is TOMORROW, June 24th. His donor is a 100% match from Poland. Hopefully, this starts the last leg of this journey for Mitch and our family.
We have been overwhelmed in the BEST way with everybody that has reached out or helped in some way. This includes calls, texts, letters, gift cards, meals, helping with Kevin, shoveling snow, watching our kids, etc...ALL OF IT has helped us get through this. It means the world to us and helps us to remember how many people Mitch has behind him.
I also have to say one more time that I am in awe of my husband. Through six months of chemotherapy and immune therapy, numerous trips to Mayo, hospital visits and stays, being away from his kids...he has shown strength I didn't know one person could have. He has continued to be the best husband, father, son and brother that he always has been.
