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 137

Journal entry by Nicole L —

We have done the watch and wait for a while now so it’s time for another report.  

Ben’s hair is starting to grow back, but we can’t tell yet what color it is going to be. Initially we thought it was going to come back in dark but now it’s starting to look pretty light, however, he says it is not gray!! Ben has been doing pretty well from the outside, but inside is fighting an extreme battle. 

The last BCR-abl from day 100 showed some cancer cells left in the body. We wish we were able to report he was cancer free but at that time he had .3% cancer cells left. The plan was to start back on the same chemo he did pre transplant to try to knock out the remaining cells for a few years. 

They also started reducing the dose of the anti-rejection medication to attempt to turn on the rest of the donor’s immune system. (This is the part of the chimerism that was showing 90% Ben, 10% donor) The gamble here is this is what was preventing the GVHD so now we wait to see if it shows up anywhere. 

Ben’s numbers continued to decline over the weeks and the platelet count was especially alarming and confusing to everyone. On Friday we heard from Mayo saying Ben needed to stop the chemo as his Thursday labs are showing his numbers are dropping too much and he needs to get labs done again on Monday so they can monitor the trend.  

They will need to see recovery in numbers before they can consider resuming the oral chemo again. The platelet count fell 20,000 in a week and he is now down to 22,000. They said when it hit 20,000, they will have to resume platelet transfusions again.  

We are praying this isn’t secondary failure of platelet recovery (SFPR). 

We are scheduled to see our transplant doctor on June 17 but if the trend continues, I’m sure we will be seeing him sooner. I’m trusting he is working on a plan B, C and D. Ben is still processing the latest news. 

We have had graduation stuff, college and state soccer to keep our minds busy. We are grateful for all of those things! 

We ask that prayers continue as we seem to be stuck in this next hurdle. 

Read More of the journal titled "Day 137"
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