Our final tributes

On behalf of the entire Herb family, a heartfelt thank you to each of you for following along on our journey and for offering up your prayers, love and support during this difficult time. From hugs, phone calls and visits to meals, flowers and donations, you have helped us to wipe away tears and take steps forward. It’s been made very clear that our dad touched many, many people – young and old – in his 66 years.

The following tribute was read during mass by my sister, Kelly: 

My sister has always been the writer of the family, documenting dad’s journey the past five months. Although it’s difficult at times to go back and read what we all experienced, my dad especially, it’s also a great reflection of the type of man, husband, father and papa he was.

My dad was a hard worker. A man of strength, determination, fight and most importantly, love.

I’m sure everyone here can attest to his strong work ethic. He was one of the hardest workers you would ever meet. I can still smell the orange soap he used in his garage to scrub off the grease after a hard days work, and I can still picture the dirt under his fingernails. He often worked long hours managing his own auto repair and towing business, leaving for tows in the middle of the night and still making it a priority to attend every sporting event or school activity and to be there every single holiday morning, even if it was just swinging by in between tows. He never missed a thing.

For the last 13 years, my dad was hit with many challenges. He dealt with more knee surgeries and replacements than anyone ever should in a lifetime. And while we remained hopeful that his last knee replacement would do the trick, we were hit with a double whammy of a another failed knee replacement resulting in an amputation, followed shortly by his cancer diagnosis. While most people would give up right then and there, my dad didn’t. I’m sure he questioned why all of this happened to him. I know we sure did. But my dad’s positive attitude, strength, determination and fight is what got him five more months of memories with his family and friends. Five more months of living. And for that, we are forever grateful.

Over the last few weeks, we’ve spent a lot of time reminiscing as a family. Family trips, softball tournaments, soap box derby races, Wildfathers…and the list goes on. But many of the memories were made on and off the softball field and with people who grew up and lived in this community.

While meeting with Bob Marcy the other day, we were talking about the time when Mr. Marcy let us use his funeral home van to travel to Illinois for a softball tournament. My dad was asked not to tell us what the van was used for…but my dad couldn’t resist. As you can imagine, with a group of teenage girls, many screams and laughs ensued. We also enjoyed many water fights outside of our hotel, resulting in my dad’s false teeth falling out and landing in a bucket of water. My dad always enjoyed making people laugh, and he was good at it. But he also had a sweet, soft, caring side.

This side was evident in the love and compassion he had not only for my mom, me and my sister, our husbands and his grandchildren, but for his friends and others he came into contact with. This often occurred with his nurses and aides during all of his appointments and hospital stays. He truly loved and admired each and every one…and the feelings were reciprocated.

While we are grateful for the last five months we spent together, always making the most of every day we had, I can honestly look back over my last 35 years and be confident that that is what we did every single day. Not one time do I think of what we should have done differently.

In some ways, living in Twinsburg made dealing with the last few days a tad bit easier. While driving into Conneaut the other day, I was hit with emotion as so many things reminded me of my dad. His former business across the street from the funeral home, the Broad Street hill where my sister and I raced soap box derby cars, the house we grew up in, Rainbow pizza.

Every memory is a good memory of our family. We lived big. Not just the last five months, but all the time we had together. And for that I am thankful.

I love you, Dad. Thanks for the memories.

I offered the following tribute to my father and my family during the burial mass:

For the last five months, in just 11 entries, I shared the story of my dad’s journey – of our family’s journey – with cancer.

Today, I want to share with you more about the man who inspired my writing, the first man I ever loved, my father, Chuck Herb.

I will say, the content of my regular blogs came naturally. It was so much simpler to capture what happened in those shorter time periods. To appropriately capture a lifetime was extremely challenging for me.

Dad was born in this small town of Conneaut in 1949 to Bob and Ruth Herb. He was the third of five children. I don’t know a lot about my dad’s childhood, but having three boys myself, I hear a lot of noise, picture a lot of wrestling – or even worse, and feel a lot of love. I’ve been told by his siblings that he was a typical middle child – quiet, laid back, a little rebellious, yet very kind.

He and my mom first spoke on the phone when he worked at a local gas station and she worked at Emco Wheaton. He asked around to find out more about this Carol Jussila, then made it a point to go to her office to handle some paperwork. He was smitten, and I believe the story goes that she was outside washing her car at her house at 570 Main Street. He stopped to ask her out. She interrupted him to ask what time it was, he said quarter to 7, and she said “oh no, I’m late for church” and ran inside.

Needless to say, they did have that first date – dinner then The Great Gatsby – and were married on Sept. 27, 1975. Three years later, I arrived…followed by Kelly in 1981. Based on the stories that have been shared about me as an infant and toddler, it would have been easy for my mom and dad to say “we’re done!” – so let me thank you both now for giving me the gift of a sister. I cannot imagine my life without her. She has always been my constant and confidant, especially during the last several months.

When I look back on our childhood, there are so many things that stand out. But, for me, what stands out the most is how close-knit we were. We did everything together as a family. Sure, Nan encouraged mom and dad to go out or take a trip together – just the two of them – but for the most part, it was always the five of us, Nan included. We went to sporting events and dance competitions and took amazing vacations as a family. And yes, we were the only family that rolled up to a softball tournament in a 40-foot motorhome, but the point here is that we were always together.

And, that still holds true today. My family lives about 10 minutes away from mom and dad, and Kelly’s family is just a little closer. We still go to sporting events and school activities together. We meet for ice cream and sit together at church on Sunday mornings. We have weekly dinners or cookouts at one of our homes. We are still…”that family.” And I couldn’t be more proud.

This weekend, when we were discussing the characteristics that dad was best known for, we chose work ethic, sense of humor, positive attitude and devotion to his family. I’d like to talk a little bit more about each of those attributes.

Dad was the hardest working man I’ve ever known. After years of working for someone, he and my mom decided to take a risk and venture out on their own, opening Chuck’s Auto Service at 213 Liberty Street on Nov. 1, 1980. This business was a huge part of our childhood. It was greasy manual labor, but it allowed my dad to work on something he loved so much – cars – while providing a wonderful life for our family. One of my favorite memories, and I’m sure Kelly would agree since we argued over who got to do it – was to call dad on the CB radio to find out when he’d be home for dinner — “Break 38 for the automan, got your ears on?”

It could have been easy for my dad to be so consumed with the success of running his business that he missed a birthday party or skipped a sporting event or a dance competition, but Dad didn’t miss a thing. He often arrived at a school function in his wrecker, wearing his work boots and blues with “Chuck” on one side and “Chuck’s Auto Service” on the other. I was so proud to see him. I’ll always remember his smell at the end of the day, the grease that didn’t wash off his hands, and the roughness of his skin from working so hard. I will also remember how soft his hands became as he grew older, as did his heart.

Another characteristic that people remember dad by is his sense of humor. He truly knew the right time to have fun and be silly and the right time to buckle up and be good. I mean, how many people can say their dad dressed up as “Mrs. Doubtfire” and proudly served as captain of the “Wildfathers Dance Team.” I can still picture his toe touch during his captain salute. There are so many Dadisms that will continue to make me laugh. Like how he always talked or made some noise right when you took a picture. Or how he made up his own words, like combining frustrated and flustered to create “flustrated.” Or, how he never knew where we were going, whether it was for dinner or a getaway. Someone would say, so Chuck, where did you go on vacation? And he’d say, Cozumel…when really it was Costa Rica.

His ability to laugh at himself and let others laugh with him carried on throughout the years, even during his time of illness. He made friends easily with so many nurses and doctors, who were both amused by his wit and inspired by his strength.

Strength. That, for me, is what defines my father. When I was a little girl, there was nothing this man couldn’t physically do. He was my own personal superhero. As he aged, his mental strength made up for the loss of his physical power. For the last 13 years, that man endured more pain and physical setbacks than anyone I’ve ever known. And he handled it with grace. He rarely complained. He smiled through the pain. He was more interested in how your day was than carrying on about his latest issue. His positive attitude is what helped others, helped me, believe that everything would be okay.

And finally, I want to reflect on dad’s devotion to his family. This was obvious throughout the years, but it became more and more apparent as I grew older. The love he had for my mom was the real deal. They were the perfect pair, and he lived to make her happy…even if that meant sitting in the car for hours playing on his tablet while she ran in and out of stores. And the love he had for me and Kelly showed in how much he loved our husbands and our children. No matter how sick or tired he was, he would still ride his scooter to a soccer or baseball game. He endured an entire day at Cedar Point, just to see his family enjoy one of our favorite summer destinations. The day before he was admitted into the hospital for the last time, he used every ounce of strength to get out of bed to watch me open my birthday presents and blow out my candles one more time. Perhaps the most profound moment of this journey was seeing him attend Braden’s 8th birthday party at Akron BMX. He had promised he’d be there, and he did just that before heading home to hospice care. That is devotion. That is strength. That is love.

I originally wrote my blog as a way to keep family and friends up to date on my dad’s journey so that we didn’t have to provide difficult updates and answer tough questions over and over again. Now, as I re-read my entries, I realize this is a tribute to my father and a testament to his strength and desire to live life to the fullest. I want my boys and my nieces, and their future families, to someday read his story and truly understand the meaning of love, commitment and family.

Braden – The bond you and Papa have goes so much deeper than sharing the middle name of Douglas. Remember how much he loved you and how much he loved watching you play sports and ride your bike.

Matthew – Your love for cars, helping others and organization comes from your Papa. He loved your old soul and your sweet personality.

Gavin – Every time I look at your handsome face, I see Papa. Your carefree attitude, sense of humor and love for speed is from him.

He loved all three of you boys – and Laina and Sophia – so very much, and he was so proud of all five of you.

Mike – They say you pick a husband that displays the characteristics of your father. And you do exactly that through your own work ethic, sense of humor, positive attitude and devotion to your family. Thank you for your love and support. Because of you, I was able to be there for my mom and dad during this difficult journey. Even when I felt guilty, you reassured me that I was where I needed to be. Garett, the exact same can be said of you.

Kelly – You always talk about how I am the strong one, but I hope you know how much I relied on your strength during the last several months. And, dad would be so proud of you today. You made sure he heard your voice and the love and appreciation you have for him. You will always be daddy’s little girl.

Mom – You are my inspiration. The lives of three of the most important people in your life – first your dad, then your mom and now your husband – ended too soon. But you continue to move forward and give everyone everything you have. The love and care you provided to dad was incredible. He fought for you, every day. My heart broke to watch you over the years, taking on more and more around the house and the yard. I know dad’s did too. But you always said, as long as I have two arms and two legs, I’ll take care of you. And you did. I am so proud of you.

I often hear you say – I don’t know what I’ll do without him, he was my rock. I want you to find comfort in the love and support you have surrounding you, not just today but as we move forward together.

After dad was diagnosed with cancer, I found myself asking why this terrible disease chose us, especially after everything we’ve already been through. I found myself cursing the year 2016. But a friend shared something with me that I gave to dad on Father’s Day of this year. And now, it applies to our entire party of 11.

I believe 2016 was not our worst year, but our greatest…
Our year of greatest strength.
Our year of greatest faith.
Our year of greatest hope.
Our year of greatest patience.
Our year of greatest risk.
Our year of greatest determination.
Our year of greatest courage.
It was our year of greatest survival.

Mom and dad…I am so proud to be your daughter. I love you – forever and for always.

 

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Dad is home

It is with the heaviest of hearts that mom, Kelly and I share that dad passed peacefully this morning at 7:15 a.m.

They say when a loved one leaves this world, it happens exactly as it should. And today, we saw the truth behind those words.

For the last week, our family has been by dad’s side, watching and waiting as his disease progressed more quickly than any of us anticipated. This morning, Kelly and I both left at 7 a.m. to run home and see the kids before school. My mom was at my dad’s bedside telling him how much she loved him. He opened his eyes and listened, made eye contact with her, then took his last breath. Our prayers for a peaceful exit were answered, and my mom had that moment that so many hope for.

Thank you for your love, support and continued prayers throughout this journey.

The last photo of our “party of 11” was captured by our dear friend, Annie Wolny, last Sunday. 

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The photos below were taken on the evening of Tuesday, Sept. 27, mom and dad’s 41st anniversary. He stopped communicating and engaging the following day, but he made sure to let each of us know how much we are loved.  Forever and for always, dad and papa!

 

Dad is going home

Yesterday was a heartbreaking day as we learned that there is nothing more the caregivers at University Hospitals can do for dad. His heartrate, blood pressure and kidney and liver functions are all being controlled by medication.

We have decided as a family to take him home under hospice care. We are sad and emotional, but also in a good place, relatively speaking. The goal is to be discharged tomorrow and go home to live life away from beeping machines, numbers, sleepless nights and lab coats.

We are so very appreciative of the care that he’s received during the last 10 days and over the last six months. His positive attitude and kind heart have had an impact on every nurse and doctor he’s made contact with. It’s not often that a nurse brings you a flower and a hug just because.

It’s ironic to reflect back on this journey and think about what we wanted from it. All we ever wanted was time. How much time likely depended on the person and our own expectations and realism. But we can all agree that it would never be enough.

In May, when he was in ICU, we had tough conversations like the ones we’ve had over the last two days, only to receive the greatest gift of all – more time. Our summer was full of love and memories, baseball, softball and soccer games, a CAVS national championship, car shows and even a family getaway. We were full of hope.

And, one thing that cancer never takes from you is hope. Hope and love. We have no idea what the future holds. We have no idea how much time we have together. And, I really don’t think any of us care. We are already making plans, starting with a pit stop at Braden’s 8th birthday party tomorrow afternoon, per dad’s request.

Tomorrow is never promised, for anyone. So live today to the fullest. Let my dad be your example.

Until next time,

Mary Beth

Prayers, please.

It’s 2016 AC. That’s after cancer. And for the last month, we’ve been trying to live life as best as we know how. Dad started immunotherapy on August 27 and had his second dose on September 7. He was tolerating it rather well, until a week or so ago, when he started acting more tired than normal and really wasn’t eating or drinking. We knew he was pretty down and out when he turned down plans to celebrate my 38th birthday at one of our favorite local pizza places, Angelo’s.

We took him to the ER at University Hospital’s main campus last Tuesday night, Sept. 13, for symptoms that were eerily similar to what we experienced last May when he was diagnosed with tumor lysis syndrome, which I talk about at length in “To hell and back.” He was lethargic. He wasn’t eating. He showed signs of confusion. He had little strength. Sure enough, his ammonia level was very high, and they admitted him for treatment and observation.

We are now on day seven in the hospital. I don’t believe I can appropriately capture what has improved or what has declined in the last week. Suffice to say he’s done just that, improve in one area and decline in another. We’ve been told ‘he’ll go home tomorrow’ multiple times. And, right now, we know tomorrow is unlikely but we are hopeful it’s coming soon.

Dad was initially treated for a high ammonia level and hypothyroidism. On Saturday, his heart rate spiked so high and his blood pressure dropped so low, that a cardiac care nurse from another floor, who miraculously happened to be stationed on the cancer floor that day and working as his nurse, performed an emergency procedure that quickly got everything back under control. We were told that she was his angel that day, and we truly believe that.

He’s had two procedures to remove excess fluid from his abdomen, withdrawing an estimated total of 10 liters of fluid, the equivalent of five 2-liter bottles of soda. The gradual increase of fluid overtime had led to a very distended stomach that was causing much discomfort and difficulty breathing. This has given him relief.

Yesterday, we learned that he has a form of liver disease, which was likely underway before the cancer traveled from the lung to the liver. This may be hereditary or caused by the medications he’s taken over the years for his knee replacement complications. Regardless, this is the root of all he’s enduring right now, and contributing to the intermittent confusion that is still present. He had a blood transfusion last evening that will hopefully normalize his complete blood counts soon. Today, he looks and feels pretty good but his levels aren’t yet where we want them to be.

A positive indicator is that his doctor wants him to continue with the immunotherapy as soon as he’s well enough. We choose to believe that this past week was just another set back and forward momentum on this journey continues.

Please, take a minute to say a prayer for my dad or send positive vibes our way. In just the last week alone, both he and my mom have missed out on so many things that mean so much to them, and to us. Life isn’t the same without them both being just minutes away. We need them both to come home.

Until next time,

Mary Beth

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Since dad wasn’t up for partying out, we brought my birthday party to him.

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We shared cupcakes with Nana and Papa in celebration of Braden’s 8th birthday!

A game changer

It’s hard to believe that it’s been well over a month since my last entry. At the same time, it’s not a surprise as our family has been very busy enjoying our summer together.

In my last blog, Living and loving life, I mentioned that we were looking forward to a little getaway to Cedar Point. Those four days were wonderful. We stayed in a cabin right on property and kept busy with all that Cedar Point has to offer – the park itself, the waterpark, the pool, putt-putt golf, the boardwalk. You name it, we did it! The forecast was calling for rain during the majority of our stay, but we believe Nan Jussila put in some overtime and moved those storm clouds out of our way. The threat of rain also kept the crowd to a minimum and the lines were no longer than 15 minutes. It was perfection.

Here are some pictures from our trip…we are already thinking about where we can go next!

DSC_0048DSC_0063DSC_0075FullSizeRenderOur journey with cancer continues. Dad is completing his fourth and final round of chemotherapy this week. He had a PET scan on Monday, and we received the results from his oncologist yesterday. The great news is that the cancer has shrunk significantly since diagnosis and has shown no sign of migrating to other parts of the body. While the impact of the chemo has started to bottom out, we learned yesterday that further pathology testing of his original biopsy in May shows a presence of non-small cell cancer, too. Yes, it is extremely rare to have both forms of cancer. University Hospitals has seen just 26 cases in the last decade, and his team believes dad makes 27. This may sound concerning, but actually, expanding the diagnosis from just small cell to include non-small cell opens the door for other treatment options, including immunotherapy.

Immunotherapy is a type of cancer treatment that boosts the body’s natural defenses to fight the cancer. The side effects are much less severe than chemotherapy. We are hopeful that this, coupled with what chemo has already done, will continue to improve his prognosis. He starts this new treatment in three weeks and will continue every two weeks for two months. After, we will compare scans and evaluate next steps.

Aside from what tests and results tell you, we also have to listen to the patient. He looks and feels great. His outlook and attitude are positive. And we all know that attitude and how somebody feels is half the battle. In fact, he continues to meet with his prosthetic team and will receive his temporary prosthetic leg later this month – God is good.

In just the last few weeks alone, we have learned of loved ones who continue to be impacted by this terrible disease – by new diagnosis, treatment and loss. What we have learned through our short journey thus far, and reflect on regularly, is how important getting a second opinion can be. It’s not a surprise that the fear of standing still for too long causes many, including us, to begin a treatment plan immediately and based on one evaluation only. And for many, that works out just fine. But for us, obtaining a second opinion was a game changer. Our family is so very appreciative of the encouragement and efforts of our dear friend, Mary Beth Gunerra. Thank you, MB, for your recommendation and referral. It truly is the best thing we could have done.

And thank you to those who continue to reach out to see how we are all doing. Your continued thoughts and prayers help guide us through each day.

Enjoy these last few weeks of summer, friends.

Until next time,

Mary Beth

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

Thankful

If someone would have told me a week ago – heck, three days ago – that dad would be dressed and outside enjoying a cookout with family on Memorial Day, I would never have believed it. But, it happened.

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Dad was discharged from Hillcrest on Friday and is now a short-term resident at a rehabilitation center in Twinsburg. He’s working on regaining some of the strength he lost during his 10-day stay in the hospital. We hope that he’ll be home by the weekend.

To see how far this man has come since we took him to the emergency room on May 18 to today is nothing short of a miracle. We talked more tonight about what he experienced during those 10 days, and I’m just so thankful that he found the inner strength and will to fight through. I’m thankful that my parents believe in the vows they took nearly 41 years ago. Because the “in sickness and in health” part has been tested for many years, but never so much as now. Regardless, mom has been by dad’s side throughout this ordeal, both day and night. I’m thankful that Kelly and I have loving and patient husbands and children that are with us through the good and bad. And finally, I’m thankful for each of you…our cheering section. Because I truly believe that days like today were made possible because of your prayers and well wishes. Thank you.

I hope you all enjoyed the beauty of this weekend with the ones you love.

Until next time,

Mary Beth

Here are a few pictures of our “picnic” this evening…

To hell and back

I’m sorry that it took so long to share an update. Every time I thought I was ready to say something, things changed. This past week has been an absolute nightmare for our family, and I’m not sure I can even put into words what we’ve been through.

I’ll start with the best news of all – dad was released from the ICU late Tuesday night and transferred to a spacious room with large windows, a bathroom, recliner, couch and cabinets! He is living in luxury compared to the place he called home for six long days.

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Braden and Laina surprised Papa with a visit late Tuesday night when he was transferred out of ICU – what a beautiful moment!

Last Wednesday night, we learned dad had a rare and dangerous reaction to chemotherapy – tumor lysis syndrome. The rapid breakdown of the cancer cells released toxins that his body could not process, resulting in acute kidney failure. His potassium level was the highest the ICU team had seen and required emergency dialysis, which thankfully reversed the problem. By mid-morning on Thursday, his kidney function and blood tests showed significant improvement. When he woke, he cried and thanked us for helping him. He told us he went to hell and back. If we only knew that was just the beginning.

In an effort to save time, mistakes and dignity, I’ll forgo the timeline and details of what happened next. In summary, it seemed that as one thing improved, another thing went awry. On day two, he spiked a fever. His blood pressure and oxygen dropped while his heart rate exceeded 200. His platelets hit the teens when they should be at least 150,000. It was one thing after another, and this man had more doctors and medications than I ever thought possible. We all hit a very dark place. We experienced every emotion possible – relief, joy and gratitude along with fear, grief and anger.

One of the most powerful moments of this experience took place on Monday. My mom, Kelly and I were all in the room with dad when a music therapist named Stephanie stopped by to visit. We were quiet and skeptical. We felt defeated. We were noticeably sad. She sensed that and pushed us to open up to her. My dad, who had been unusually quiet for several days, started to answer her questions. He told her what he used to do for a living and what he likes to do for fun. He told her about his cars and his family. He told her he liked ‘the oldies,’ and they agreed on “Old Time Rock & Roll” and “Under the Boardwalk.” While we held hands with tears flowing, she sang those two songs to our family in the most perfectly soothing and folksy way. That was the medicine our family needed. It was then that the true healing began.

That evening, the four of us watched the CAVS game together in Room 24 of the ICU. I read my last blog, “Chemo – a catch 22” to dad, and we walked him through his experience. That night, we slept more soundly aside from the hourly nurse visits, beeping monitors and uncomfortable sleeping arrangements. The next day, we learned that all of his electrolytes were normalizing. They removed his catheter. He sat in a chair. They decreased or eliminated some medications. He was on the mend. Dad was back.

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Dad sitting in recliner on Monday.

Despite all of this, it’s been very difficult to answer the question, “How is your dad doing?” Not only because the situation was ever-changing, but because we also came to terms with the reality of his diagnosis. One of our favorite doctors said it most eloquently: “There are clear skies and sunshine ahead, but there is a dark ominous cloud following behind.” We aren’t sure what the future holds. We don’t yet know if treatment is an option, or even a desire. What we do know is that chemotherapy nearly killed him, and we will not let that happen again. We will do what we set out to do from the beginning – live with cancer. And I mean, really live. Dad has already talked about getting fitted for his prosthetic leg. We have lots of baseball and softball games to see. We have a NBA championship to witness. We’re making plans for the summer. We are going to live and love bigger than we ever did before. And that won’t be hard for us.

This week changed us all. We became closer, if that’s even possible. We were raw. We ‘cried ugly’ together. We witnessed how fragile life truly is. We saw so much pain, sorrow and suffering in one unit of a hospital, that to understand how that extrapolates throughout the world is suffocating. But, we also made new friends with other families, nurses, doctors and staff. We saw healing and hearten. We developed an appreciation so deep for the wonderful team that took care of dad in the ICU especially Tina, Tat, Morgan, Melanie, Jen, Kyle and Jared. You will always have a special place in our hearts.

Dad should be discharged tomorrow to a rehabilitation center where he’ll spend a short time working with a therapy team to regain the physical strength he lost during his hospital stay. Ironically, we don’t really have a map to follow from there yet, but we are ok with that. All we want is to get back to enjoying the sunshine.

Until next time,

Mary Beth

 

Chemo – a catch 22

In my last post, “Treatment is (finally) underway,” it was made clear that our family was ready to begin treatment. We were well versed on the side effects that these chemicals have on one’s body. We knew what to look out for, when to call (and when not to call) the doctor, and when to seek medical treatment. Or so we thought.

Dad handled round one of chemo, which started last Tuesday, very well initially. He even cut the grass on his riding lawn mower and rode his scooter to Laina’s softball game. But come Monday, his health and state of mind began to rapidly decline. We called his doctor’s office twice on Tuesday to describe his symptoms and hung up with the understanding that what he was experiencing were all common side effects of chemo but to monitor him closely. I spent the day with him yesterday while my mom went to her office in Conneaut to do some work. My one-on-one experience with him was what I needed to realize that things weren’t right. We called the doctor again and were told to go to the ER immediately.

Dad was diagnosed late last evening with Tumor Lysis Syndrome, an extremely rare and dangerous outcome of chemotherapy. Essentially, the chemo did what we asked – it kicked cancer’s butt. But it did so at a rate so rapid, that the cancer cells exploded in his body and released toxins that his body couldn’t process quickly enough. His kidneys were failing. They began a three-hour emergency dialysis around 2 a.m. His uric acid and potassium levels have improved, and the team is cautiously optimistic that this is an acute situation, meaning he will not need to continue dialysis once kidney functions return to normal.

Thankfully, dad has no idea what he’s going through right now. But we cannot wait for him to come to and to share this experience with him. I’m sure he’ll get a kick out of some of the funnier things he did during a very scary and uncertain time.

It’s rather ironic that the treatment we wanted to begin so badly to fight these cancer cells is having such a positive yet negative impact on his body. Now we know why people have a love-hate relationship with chemo. There is no doubt that we will need to revisit our plan of attack once things normalize.

I recently read a friend’s blog about her husband’s journey with cancer. One of her entries referenced that her life sometimes felt like a “shit sandwich.” I remember chuckling when I read this, and relating. Right now, I couldn’t say it any better. It’s been a rough couple of weeks for all of us, me included. From our cat passing last week to Braden’s hospitalization to this latest development with dad. Until now, I couldn’t find the words or strength to share an update. I was completely lost. I found myself asking “Why me? What did I do – what did my family do – to deserve this?” It’s now that I have to remind myself that this – the good and the bad, the ugly and the beautiful – is life.

And along every step of the way, I’ve never been alone. The support I’ve received in just the last week alone is overwhelming. I am so grateful for so many family members and friends that I’ve reached out to with questions or a favor or an ear.  Especially those that have been served a “shit sandwich” of their own but have been willing to help in any way or give answers despite their own struggles and loss. It’s the selflessness of others that gives you the strength to keep moving forward.

So on behalf of my family, I thank you for taking the time to read these updates and offer your love, prayers and good vibes. We are grateful that so many people are cheering for Chuck, including long-time loved ones from our hometown of Conneaut to new and dear friends in our home of Twinsburg. Please, keep on cheering. It’s a long road ahead, but we’ve got this together.

Until next time,

Mary Beth

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