Ben Lawrence’s Story

Site created on November 22, 2020


Welcome to our CaringBridge website. We are using this site to keep family and friends updated in one place. We apprecaite your support and words of hope and encouragement as we continue on this journey with Ben and the Lawrence family.
As many of you know, on March 13th, 2018 Ben was diagnosed with Chronic Myelogenous Leukemia (CML).  Ben had gone in for a physical to check his blood pressure, and mentioned that his stomach was sensitive to the touch. He had taken a hit to the stomach while coaching wrestling, and we wondered if he'd injured his spleen. The doctor ordered some tests and an ultrasound. We were expecting to hear that he needed some medicine for high blood pressure and possible treatment for his spleen. Cancer was the last thing on our minds. 

Instead, we got a call that Ben has leukemia. Those next few weeks seemed like an eternity as we waited for an oncology appointment and the results from a bone marrow biopsy. We then learned that Ben has Chronic Myelogenous Leukemia (CML).

 

We were flooded with sadness and fear and uncertainty. Questions about the what-ifs of our future kept us up at night. Ben has always worked, while I stayed at home with our five kids. Could Ben keep working? Would I have to start? What would insurance cover? How would Ben get to his appointments? How would the kids adjust, who already were adjusting to new schools and friends after our recent move to Ankeny?

 

Regarding treatment, the doctors were initially optimistic and prescribed target chemo with a daily pill. They thought Ben, at only 39 years old, should respond well and his cancer would be easily controlled.

 

Unfortunately, cancer is unpredictable, and it didn’t take long to figure out Ben isn’t the norm when it comes to leukemia. There are five treatment options, and he has failed all of them.

 

After giving it the old college try, it is time for a bone marrow transplant as one last shot to beat the leukemia.

 

There are many logistics of a transplant -- Ben and I have to move to Minnesota for at least three months, living in a hotel near the hospital. We have to line up care for our kiddos (and fur kids) at home and due to Covid risk, likely will only get to facetime them during the duration.

 

On top of all that, it is a frustrating battle of helplessness, exhaustion, vertigo, bone/joint pain, medical bills and various other side effects – we don’t ever get a "break."

 


One of the hardest things is figuring how to talk to the kids about it and how to answer their hard questions -- trying to provide comfort and security without making any promises.

 

Which is not to say there are no blessings within all the pain. We do have a new perspective of the gift of life, and on the importance of never taking a day for granted. We are reminded that we only get ONE -- one life, one body, one shot at this, so instead of getting sucked into the negatives, we are pressing forward with the best we’ve got. Life is a gift that should be cherished, no matter the circumstances.

 

The journey is hard and the road is still very long, but we are grateful for the love, prayers, support and encouragement of our family and friends, and those people who barely know us.

 

Newest Update

Day -5

Journal entry by Nicole L —

When I arrived at the hospital this morning, Ben had already had a round of chemo, coffee and was ready to go for a walk. We walked the halls and got back in time for his next round of chemo. We've both noticed he's starting to become more tired throughout the day so he slept through that treatment.
The doctors are happy with his counts so everything is going as expected so far. There are different teams that come by throughout the day to check in and give small portions of education. Ben greets everyone that stops by with his contagious smile and likes to ask them questions and get to know each of them.
Our oncologist came by today and said one of the bone marrow test came back and they found a disorder in his bone marrow. Myelodysplastic syndrome-which would explain why his counts kept dropping when he was on treatment and couldn't stay on one for very long. The good news is the way you treat it is a bone marrow transplant, so the upcoming transplant should take care of that too. I guess if we ever question if a transplant was the right decision, now we know we would have ended up here eventually regardless.
We are supposed to get a bunch of snow up here tonight and tomorrow so I'm hoping I can make it to the hospital for a visit. I made some butternut squash soup in the instant pot for tomorrow so I'm as ready as I can be!
Read More of the journal titled "Day -5"
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