Living and loving life

Hopefully like you, our family has been enjoying the start of summer – complete with baseball, softball and tee-ball games, tournament championships, and Father’s Day and birthday celebrations. Oh, and of course, a CAVS National Championship! WOOT!

Amidst all the joy, there are so many who are still dealing with heartache and suffering, and our hearts hurt for them. For us, cancer is still very much a part of our lives. (Gosh, wouldn’t it be great if the power of hope and love made it just go away completely?!). The good news is that we continue to move forward on this journey, and we are in a place that is so much better than just a few weeks ago.

Dad went for a comparative CT scan on Monday, June 20 then had a follow-up consultation with the team at University Hospitals Seidman Cancer Center that same afternoon. There was a lot of discussion about his actual cancer diagnosis and the diagnosis following his first chemo treatment in May. In simplest terms, patients with small cell lung cancer do not typically get Tumor Lysis Syndrome. Well, we all know that dad likes to make medical professionals scratch their heads, which he did yet again! His new oncologist has treated more than 800 cases of small cell lung cancer and has never seen a patient develop Tumor Lysis Syndrome, as that typically occurs only in non-small cell cancers. Alas, dad’s cancer diagnosis is correct, but his chemo reaction diagnosis remains questionable. While we may never know exactly what he had when he spent a week in ICU, we do know that the care was fantastic and the chemo made an impact…

The tumor in his lung shrunk by 50 percent. 50 PERCENT! And his LDH level, or an indicator of the amount of disease in one’s system, reduced by half as well. And that’s after just one round of treatment!

The oncologist believes that the same impact they saw in the lung also took place in the liver. However, they opted not to perform a CT scan with contrast on the liver at this time, which is needed to be 100 percent certain. Either way, we are elated! After learning of this good news, we discussed the next steps for treatment. Essentially, he will continue the same treatment plan that was performed in May, but with some modifications to the doses based on his current weight, body mass and LDH level.

Dad was understandably apprehensive at first, but was assured he would not experience the same setbacks again. Dad successfully completed round two of treatment last Saturday, June 25. His body tolerated it exceptionally well. While he’s tired and still lacks some physical strength, his pain is minimal, his appetite continues to improve, and his spirits are high. Hallelujah!

We head back for round three the week of July 11 and aim to wrap up his first full cycle in early August. From there, comparative scans and labs will be performed to see how the cancer responded to all four rounds.

In the meantime, we have a lot to look forward to, including a much-needed getaway as a “Party of 11” next weekend. We’ll be camping together as a family at Cedar Point, just like we did for so many years as a family of five (Nan Jussila included). I’m certain that a few weeks ago, we weren’t sure whether a trip like this was possible, but here we are. Just wow.

For 52 years, Cleveland fans have believed that a championship was possible for this great city and state, and we had the opportunity to witness that miraCLE together as a family on Father’s Day. We continue to believe that miracles are possible for our own personal superstars as well.

Until next time,

Mary Beth

Editor’s note: Please say a prayer for our dear friend Heather Smith and her children Ella (10) and Caleb (8) as they find their new normal after the passing of their husband and father Nicholas Smith on June 21. Nick lived with brain cancer for 2.5 years. He was 37. He and his family embodied what it means to truly live with cancer. Link to obituary >









Finding our new normal

Today, my mom drove to Conneaut to spend some time at her office. I worked from my parents’ house in Twinsburg to keep an eye on my dad. Exactly four weeks ago today, we did the same thing. But wow, what a difference one month makes.

Four weeks ago, my dad wasn’t able to communicate clearly. He had lost nearly all fine motor skills. He wasn’t eating and couldn’t stay awake longer than a few minutes. Today, he fixed his own breakfast, emptied the dishwasher, ate a good lunch, got the mail and played on his tablet. Most importantly, he was dad.

The last two weeks of May were pure hell. The first two weeks of June have been a blessing. Since my last post on May 31, dad has continued to show progress. He was discharged from the rehab center on Thursday, June 2. Since, he has had good days and bad. But overall, he has shown marked improvement in strength, spirit and pain management. I think being at home and finding a new normal have been the best medicine for him. And mom, too.

Together, we have enjoyed t-ball, baseball and softball games. We’ve shared several family dinners. We had a fire and watched the CAVS game. We celebrated Matthew’s 5th birthday (which is actually tomorrow!). Simply put, we’ve just spent time together. And it feels SO good.

As for what we are doing about the cancer…

Our family opted to seek a second opinion from a top-rated oncologist at University Hospitals Seidman Cancer Center last week, thanks to a dear friend. I, unfortunately, was in Chicago but joined the consultation by phone while my mom, dad and sister met with the new doctor in person. Within five minutes of the conversation, I sent Kelly a text to tell her that he had my vote. By the time he left the room, my family felt the same. His expertise, patience and personality were exactly what we needed to continue this journey. We go back on Monday, June 20 to discuss next steps. In the meantime, the doctor is reviewing all of dad’s prior scans, labs, pathology reports and so on.

So, that is where we are. While there hasn’t been much progress on the treatment front, there have been so many steps forward for all of us. Our prayers were answered last month. And it’s our job to make sure we spend our time together doing what we do best – being a family and loving one another like tomorrow is never promised. We urge you to do the same.

Until next time,

Mary Beth