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Last Christmas, 13-year-old Leo Johnson knew his leukemia had relapsed.

He understood what that meant. It was his second relapse and with each relapse the hopes for recovery grew dimmer.

But his Christmas list reflected his undaunted sense of adventure: camelback Trailblazer backpack; brush pants or field chaps; camouflage shirt; camouflage netting.

More than any of those gifts, however, he wanted every family member to write each other a letter at Christmas.

For nearly two years the boy so aptly named Leo had fought his disease with the heart of a lion. So more than most 13-year-old boys — more than most of us, actually — Leo understood the importance of not leaving things unsaid.

With a true writer's instincts Leo would awake in the middle of the night and summon one of his parents into his bedroom to retrieve his paper and pen. He wrote moving letters to each of his family members — his father, Jeff; his mother, Susan; and twin 8-year-old siblings Kay and Henry. His letters to his brother and sister showed how much he wanted to protect them, look over them, how much he worried about his legacy as a big brother. He ended both letters by saying, "All I want to do on Christmas day is give you a big bear hug."

How had a boy so young learned so much about the enduring power of words?

Maybe, in part, it was genetic. His mother and father are both thoughtful people, witty, gifted with words.

And in part it was through example. During Leo's treatment his father, Jeff, kept a sort of public diary about his son's illness and his valiant fight for life. He sent regular e-mails, dubbed "Leo Updates," that eventually reached thousands of people in Cincinnati and the Miami Valley.

I was one of them. Susan and I became friends through our book club that started nearly 10 years ago. Our firstborn sons were about the same age, and we compared notes about starting kindergarten and joining Cub Scouts.

Now, instead of sharing thoughts about Margaret Atwood or Henry James, I was reading letters like this one from Leo's father:

Leo has fought his way through this week with his usual resolve and quiet determination. When we were walking down the hall after his surgery, he was pushing his pole and kind of stooped over from his belly pain. I asked him if he wanted to turn around and go back to his room. He declined and continued to press on down the hall to the far set of elevators, turn around and walk all the way back...no complaints. I know it seems like a little thing, but he does that kind of stuff all the time. The kid is metal.

March 1, 2004

Leo had always been healthy, an outdoorsy kid never more content than when chasing snails and frogs with his best friend, Bradley Rapien — the soulmate he met while waiting for the bus on the first day of kindergarten. But on March 1, 2004, Susan took Leo to the pediatrician with a fever and a nagging cold. "I don't like the way this looks," the pediatrician said, pointing to the telltale small purple bruises all over his body. She referred him to hematology and oncology at Children's Hospital Medical Center in Cincinnati, where Jeff met them a short time later. "It was the longest drive of my life," he recalls.

By 7 o'clock that night, they knew it was leukemia.

Pediatric oncologist Denise Adams explained the situation to Leo: "There are cells in your blood made in your bone marrow, and one of those cells is growing out of control and is crowding other cells from growing. We're going to give you special medicine to get rid of those cells."

Without offering any false hope, Adams explained how effective treatment could be, assuring Leo, "We're going to do our very best."

Then the doctor turned to Susan and Jeff and said simply, "You are a part of our family now, and we are a part of your family."

By the next morning, the doctors broke the news that Leo had "the bad leukemia," Acute Myelogenous Leukemia (AML), which strikes about 500 children in the United States every year. It is less common than Acute Leukocyte Leukemia, (ALL) which strikes about 4,000 children per year. And it has a lower cure rate — 50 to 60 percent for AML versus nearly 90 percent for ALL.

Their normal day-to-day life stopped. It was as if they had stepped on a tilt-a-whirl in which their lives would be precariously balanced, as Susan later put it, between "Home vs. Work, Leo vs. Kay and Henry, Home vs. Hospital." Susan immediately took a leave of absence from her part-time job as a speech pathologist at Miami Valley Hospital. Jeff returned to work within a matter of weeks, but his employer, the online company Making Everlasting Memories, allowed him to work flexible hours and to be with his family when he needed to be.

At first, Jeff wrote the "Leo Updates" for purely practical reasons, as a way of passing along information to their many friends and family members. Before long, the e-mails grew into a form of therapy, becoming increasingly philosophical and spiritual. "I needed to make sense of it somehow," he says now. Even on the darkest days he found a way to sound optimistic, ending every letter with the trademark signoff, "Stay positive, you guys are WARRIORS!!"

March 28, 2004

It is hard to believe that we've been at this for 4 weeks....Leo continues to string good days together. Medically, everything is pretty much the same as the last time I wrote (good eats, good blood, no counts, minimal side-effects). We're starting to develop some family traditions at the hospital, for example, whenever we get on the elevator and there's no one else on it and the doors close, we start dancing and acting silly....then, when it stops and the doors are about to open, we stop and act normal. You'd be surprised how fun that is because you think you are getting away with something (I just hope there aren't elevator cameras !)

Susan and Jeff met at Miami University in 1982. She was a freshman; he was a worldly sophomore. They dated for a few months, and for Christmas that year he presented her with diamond-chip earrings.

"I like him," she told her mother, "but I don't like him diamond earrings."

"Then you have to give them back," her mother insisted.

They broke up. "I was only 19," Susan recalls. "I knew he was the type of person I wanted to marry, but I wasn't ready to get married."

Jeff was crushed: "I was diamond earrings all-the-way liking her."

But they hung out with the same group of friends, and by the next Christmas they were dating more seriously than ever. Jeff presented Susan with another jewelry box containing the world's gaudiest fake emerald earrings. Hidden underneath them were the same diamond-chip earrings.

This time, Susan kept them: "I kissed enough frogs in the meantime to realize he was worth hanging onto," she says. "The ones who can make you laugh, who you can tell everything to. You don't meet those people every day."

Leo was born Dec. 9, 1992, at Miami Valley Hospital. "We had no family in Dayton, so we really bonded as a family," Susan recalls. "For five years it was just Jeff and Leo and me."

Two years after the twins were born, Susan was diagnosed with breast cancer. It was caught in the early stages, through a baseline mammogram, but Susan didn't want to take any chances. She opted for the most aggressive treatment plan: a bilateral mastectomy. She wanted to be sure to be around to raise her children.

It hardly seemed fair that lightning would strike twice, that a second member of the family — and one of the children — would be diagnosed with cancer. But there wasn't any time for self-pity. Kay and Henry were given blood tests because a bone marrow transplant from a sibling would offer the best chance for Leo's recovery. The twins, unfortunately, turned out to be a match for each other but not for Leo.

It was on to Plan B: two more rounds of chemotherapy to induce remission. When asked how he felt about not having a match, Leo answered, "Not that bad."

May 23, 2004

It has been an awesome week with Leo at home!! He has had a regular week (with the exception of going to school) as an 11-year-old boy and the timing couldn't have been better what with the emergence of the cicadas. Susan and I have been enjoying our time together with Leo at home. As I was telling my friend, he has changed. He is no longer a little boy; he is a young man with tremendous resolve, a great attitude, amazing strength and character, and he has been an inspiration to Susan and me. We have really gotten close to him, which has been a blessing, because in normal circumstances I don't believe that our bond would have grown like it has.

When he celebrated his 12th birthday on Dec. 9, Leo's leukemia was in remission. More than 100 friends showered him with birthday cards — a way of showing him how many people had been keeping him in their hearts and in their prayers. This time it was the more reserved, private Susan who wrote a heartfelt "Leo Update," thanking friends for their support:

I have gained a whole new perspective on finding extreme joy in the ordinary. I say an audible "Thank you, God" to the Lord and our cats each morning that I put three healthy kids on the bus to go to school.

By early January, the family received devastating news: Leo's leukemia had returned. Instead of packing him off on the school bus, the family was preparing Leo for two more rounds of chemotherapy and a bone marrow transplant to be followed by more chemo and possibly radiation.

Once again, they were thrown out of the routine of normal family life as Leo spent long stays in the hospital. "When you were at Children's you wanted to be at home, and when you were at home, you wanted to be at Children's," Susan said. "When we were with him, we always felt much better, but we felt we were cheating the twins."

March 1, 2005

Today marks the 1 year anniversary of Leo's diagnosis....Counting today, Leo has spent 160 of the past 365 days in the hospital. Wow. Susan and I had no idea a year ago where we would be today and we can't know where we will be a year from now. What we do know is that we are proud of Leo and can't love him more than we do right now, not only for what he has endured but for the way he has endured it.

On April 16, 2005, Leo received his new bone marrow cells — 714ml, about the same amount you could fit into a bottle of wine. For four months and counting after the transplant, Leo proved to be an overachiever in his recovery, earning high marks at his clinic appointments: good blood counts, good anti-rejection levels, no fevers, infections.

Boredom proved a more formidable foe as Leo remained housebound, avoiding crowds. "You could be an astronaut," Jeff told his son. For a kid who loved to be outdoors, he complained very little about being cooped up.

Boredom, this family could deal with. As Jeff put it, "No news is definitely good news."

September 6, 2005

There's no easy way to say this....Leo's leukemia has returned. Yesterday, after we returned home from clinic, Leo's bone marrow transplant doctor called (when the doctor calls, it is either really good news, or really bad news — the nurse calls if it is just normal news). His blood smear showed abnormal, leukemia-looking cells. There have been many, many tears and utter confusion as to why this dreadful disease has come back into Leo's life so soon...We were all really sad last night as the reality was soaking in. Tonight, Leo spent some time with his neighborhood friend and they had their usual way of communicating their affection toward one another (like not talking about it, playing Halo, and stealing each other's ball caps).

The weekend before the new round of chemotherapy, Jeff took Leo dove-hunting for the first time — an outing he would describe in his Christmas letter to his father as "one of the best days of my life." He went into the field with his IV bag; his father unhooked him, and they bagged some birds. As much as possible, they tried to provide Leo with a normal life, normal activities, from tutoring sessions with his teachers to marathon Xbox sessions with Bradley and all the other friends who never treated him like the "sick kid."

In a rare moment of weariness, the indefatigable Jeff admitted in late October, "Leo's tired, I'm tired, and Susan's tired; and it's not a good kind of tired. It's the kind of tired you get from suffocating worry and crushing fear (oh, and lack of sleep). It's the worst kind of tired. But we're here, we're alive, we've not lost faith or hope despite the circumstances, and we're fighting on for the next day."

October 11, 2005

Numb....The results of Leo's bone marrow biopsy today showed that he has about 30% blasts, or cancer cells, in his bone marrow. In every regimen of chemotherapy prior to this his body has responded with a remission (absence of detectable blasts). Over the course of these therapies the doctors surmised that the remaining cancer cells have become 'resistant' to the drugs that he has been given...We haven't lost hope that this next treatment will give Leo another remission, but with each failed therapy the universe of available options grows smaller. The time for a miracle is now.

The Johnsons decided to include Leo in a Phase 1 trial of an experimental drug called temozolomide. Before that, they set out on a family road trip — Leo's Make-A-Wish trip to Tybee Island, Ga. It was a joyful, sun-drenched week on the beach, complete with dolphin boat tours and fishing outings on the marshes. Was it time to stop treatment altogether? Some had suggested that, but the Johnsons — Leo first and foremost — didn't want to stop fighting "as long as there is something else to do and Leo has the desire and strength to do them," Jeff said.

"That is huge for Leo, always to have hope," Susan said.

Susan and Jeff continued to pray that God was saving his best for last.

November 14, 2005

On to the next study....Over the past several days, Leo's blood counts have shown that the temozolomide is not having any effect on his leukemia.... The irony of all of this is that Leo is feeling really good. In a weird way, it would be easier to hear all of this bad news if he were sick. We are being told that his body is not responding to these treatments, yet to look at him you'd think he was just another 12-year-old kid. He feels FINE. Over the weekend, we took an overnight trip to our favorite camping spot in Ohio. It is a Presbyterian Church Camp near Lancaster where we've been many, many times with our pop-up trailer. The air was beginning to crisp up, you could hear a hound in the distance barking at something I'm sure his nose was smelling, the moon was full, the sky was clear and the pines were casting wonderful shadows on the pine needle mulch that was all around us. It was a very emotional time for Susan, Leo, and me as we talked about what was happening and how scared we are. I'm sure we all wondered to ourselves if we would ever be together in that place around a campfire again. You can have all the faith and hope in the world yet you can't keep those thoughts out of your mind at times.

How do you talk to your 13-year-old son about dying?

Leo was strong in his faith; if he died, he had no doubts about where he would be going. But, as always, he didn't hold back his feelings. "I know heaven is a wonderful place and all, but I don't want to go there just yet," he confided to his parents.

Another time he asked his mother, "Do you think I would have been a good Dad?"

"The best," Susan told him.

November 28, 2005

Leo is still feeling fine, so we have decided to hold off any more experimental chemotherapy until there is some indication that things are changing and that we need to proceed. We've been hunkered down as a family, not doing anything spectacular, but just being together. We've had some tough discussions with Leo about what is going on and he understands (without really saying so). He wants to keep going. He doesn't want to stop. Pick an adjective to describe the toughest person you know, then multiply that by 10 and you have how tough Leo is. He is nails.

Throughout their ordeal, Susan and Jeff never wavered in their Christian faith. "I don't believe God did this, God didn't give Leo leukemia," Jeff said emphatically. "That's not my God."

Added Susan, "We didn't always get what we wanted, but we always got what we needed to get through the day. And there have been so many blessings along the way."

An insightful, inquisitive boy, Leo naturally began to ask some tough questions of his own: "Can we really trust God? Has he been listening to our prayers?"

His parents told him those questions are perfectly natural. "God is bigger than we can imagine," they reassured him. "He doesn't live according to our earthly ideas of time and space."

December 22, 2005

There are blessings this Christmas. With whatever is troubling you, may you find peace and comfort this Christmastime knowing that the Christ was born, lived, and died so that we could be blessed with grace, be forgiven, and be promised an eternal life in heaven.

As the news grew progressively worse, it became harder and harder to open the Leo Updates for fear of what they might contain. Inevitably, there were uplifting words, as if Jeff, in some strange way, were trying to comfort everyone else. But at last there came a letter that didn't contain the comforting signoff, "Stay positive, you guys are WARRIORS!!"

March 5, 2006

Fought the good fight....Leo's leukemia is still active. His white blood count has doubled each day for the past two days, which is a sign that despite this other chemotherapy, it has not been able to slow down the progression of his disease. There are other indications from his musculature and movements that indicate his leukemia may have entered his central nervous system... I couldn't have imagined when we started two years ago that we would run out of things to do, but we have. We've talked with Leo about all of this and he is fully aware of what it means. We asked him today if he was tired of fighting and true to his spirit he said, "Not if there is something else to do."

A few nights later, the family met with their pastor, Alice Petersen, to prepare Leo for the days ahead and to ease his fears. The more Leo talked, the more it seemed as if he were preparing them. He seemed less concerned about himself than how they would be after he was gone.

He worried about his place in the family; how would they answer the question, "How many children do you have?"

They assured him they would always respond that they have three children: "Two here on earth and one with Jesus in heaven."

March 13, 2006

Our beloved son Leo Gabriel Johnson died peacefully in his sleep this morning at home with Susan and me by his bedside. We are at the same time sad, heartbroken, relieved, and overjoyed that he has made his journey from this earth to the boundless peace, love, and beauty that is heaven. We rest tonight knowing that his spirit will always be among us and that we will always honor him as a member of this family.

March 18, 2006

Long lines of mourners wait in the receiving line at the Crestview Presbyterian Church in West Chester, passing tables with displays of Leo's Scout uniforms, butterfly nets, and other mementoes of the outdoor life he loved so much.

Dr. Denise Adams was there on the first day of Leo's battle, and she was there on the last. "I learn from all my patients, and I learned from Leo how important your family really is," Adams said.

The church was packed with family friends and congregation members who had supported the family with two solid years of casseroles and prayer chains.

Nobody spoke the question that everybody was feeling, deep down: "He fought so hard, so courageously. Why couldn't he have been rewarded with a long and healthy life?"

But there was no anger during the memorial service itself, only gratitude for Leo's short but remarkable life.

It concluded with Jeff's heartfelt eulogy and the words that he read for Susan: "He was able to shoulder so much and still have enough to keep us all positive and hopeful. I think about how he always came downstairs in the morning carrying his backpack for IV fluids and antibiotics, FULLY DRESSED and ready for the day. 'What are we doing today?' he would ask.

"What do you do with memories like those? Well, we have a rough road to walk and we will think about him continually for the rest of our lives. We know a spirit like Leo's cannot just disappear, but continues on teaching and reteaching us lessons as we go. So we will try to be a little like Leo. We will notice the birds, smile a lot, learn more about things, persevere, trust that God will give us what we need, love each other and LIVE A GOOD LIFE."

In the months following Leo's death, countless people have been inspired to do just that. Friends have donated more than $6,000 to the Make-A-Wish Foundation, more than enough to fulfill a wish for another child, and more than $8,000 to a community foundation to establish a bird sanctuary in a local park. Four of Leo's former teachers from the Lakota School District ran or walked the Columbus Marathon in October, raising more than $6,000 for the Leukemia and Lymphoma Society. "He was a carefree spirit and he handled his hardship so well at such a young age that I couldn't help but to be inspired by him," explained his sixth-grade science teacher Laurie Richards, who had never been a runner before. "He was a special child that taught his teacher to be happy with the life you have."

In the end, that example may be Leo's most enduring legacy. The Johnsons can't count the number of people who have told them, "I've slowed down," or "I'm spending more time with my family" because of Leo.

They are taking to heart the final words that Jeff wrote on the day of Leo's death: I'm certain that part of Leo's legacy to those left here is a simple message that we often lose sight of in just the living of our daily lives: Love each other, be strong and tough in whatever it is that you face, and have hope in all circumstances. Leo did.

December 25, 2005

On their last Christmas together the Johnson family opened their letters to each other.

To his Dad, Leo wrote, "This is a gift I wanted you to have for being with me all the way and being one of the biggest mentors in my life."

To his brother Henry, he wrote, "One of my fondest memories of you is when you were a little baby in your blue jammies. You would scoot on your tummy around the kitchen floor. I just wanted you to know how much I love you."

To his sister Kay, he wrote, "I love you and love how you like to do things with me like hiking, horseback riding, catching cicadas when they hatch and a lot of outdoor things. Well, I just wanted to tell you that I think you are a very enjoyable person."

And then there was the letter to his mother.

Dear Mom,

Mom I am writing you this letter to let you know how much I love you. You are the greatest person I've ever known... I thank you for your countless hours of tidying up my room and the house and for making delicious meals for the family and I. Thank you for always being there when I am sad or frustrated. We know each other better than any other two people and when we are near each other we almost don't need to talk. One of my favorite times with you is the night time reading together and listening to Garrison Keillor and my favorite book I read with you was the Little House books. I liked those because I could snuggle up against you and smell your signature 'Mom' smell. I love you Mom more than there are stars in the sky. I hope you have a Merry Christmas.

Contact this reporter at (937) 225-2209 or mmccarty@DaytonDailyNews.com.

How you can help

Friends of Leo have contributed to the Make-A-Wish Foundation and a local foundation to establish a bird sanctuary in his honor at a local park.

Make-A-Wish Foundation of Southern Ohio

10260 Alliance Road

Suite 200

Cincinnati, OH, 45242

Community Foundation of West Chester and Liberty Townships

5641 Union Centre Blvd.

West Chester, OH 45069

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