Dear Lesly...

Did you know I first saw you tethered to an IV pole in the halls of Emanuel Hospital? Just like Josh you were in treatment for childhood cancer. You were 5 years old and so was Josh. In fact, your birthday is only 4 days after Josh’s. Both of you are millennium babies! Beautiful brown eyes, smooth brown skin, curly black hair with a round cherub face, your smile lit up the room. You were adorable.

Then you went to Camp Agape and so did we for two summers in a row! Your energy and giggles were infectious. I got to know your mom and dad and found out what special people they are. They adopted you when you were 3 years old from Guatemala. Your mom explained how she put food all around their house, easily within your reach when you first came home, so you could eat when you were hungry. You couldn’t speak English. You wanted to sleep in the day time and play at night. Slowly you became their little girl. You were healthy and happy, but your belly was distended. Your mom, who was a nurse, just knew it was worms so she took you to the doctor to get medicine. But she was wrong. It was Neuroblastoma…cancer…

You and Josh played a lot together at camp. You two were best buds. Sometimes you would hug him, hold his hand other times you pushed him away and wanted nothing to do with him! You always had a mind of your own. That first summer Josh had just gotten his tracheotomy and I was so sad. Your mom listened to me talk and cry. She was so caring and loving giving me good advice. She became my friend. Your dad always wore bright colorful tie dye shirts. We could always spot him from far away. He was an artist. Those two summers were great as you and Josh ran and played, creating beautiful artwork with your moms hovering over you making sure you both took your medicines or didn’t get too much sun. You and Josh loved campfire time singing those silly songs, getting up on stage and wiggling. Josh’s sisters fell in love with you and talked about you often when camp ended. What precious memories.

Time marched forward. You had your medical issues. Josh had his. Sometimes your mom and I would go to lunch just to catch up. Josh had lots of medical procedures, which seemed to consume us. We ran into you at clinic once just after your Disneyland trip. You were dressed up as a Disney princess and you were so cute! I forget just which princess it was, but you were thrilled to show everyone how beautiful you were. All the nurses, staff and doctors “ooed and awed” over you. It was fun. We partied with you at two different CCA (Children’s Cancer Association) events. One of those years you were a Hero Kid with your shining face displayed on the Wall of Courage. That first year you and Josh held live white doves in your hands and released them up into the great blue sky. It was a powerful and moving moment. The picture above captures part of that moment. The second year it was an Aladdin theme and you ran right up front with the belly dancers wiggling your hips, twirling and dancing just like a princess. Josh and your dad and I watched you for a long time. You made us smile. You were so free.

Then one day I found out the Neuroblastoma had again invaded your little body. I called your mom and we cried together. Then she asked me, no she begged me not to tell Josh about the cancer coming back. She told me to just love him and enjoy him and let him live a life full of love and laughter not a life full of worry about cancer and children dying. So I did...well I tried. I found out I’m not very good at keeping secrets, especially this kind of secret. One evening Josh began to cry wanting to know what I wasn’t telling him. We had a long discussion about you, about death, about heaven. It was only one of many discussions about life and death that we’ve had since then. Josh asked me to NEVER keep secrets from him again. He told me he wants to know because it’s better to know the truth than to worry about what might be. “And the truth will set you free.” So I don’t keep secrets from Josh anymore.

And as time went on your parents fought for you through research and doctor visits traveling all over the US, clinical trials, thousands of prayers and more research. They fought valiantly against insurance companies and financial problems and cancer. You courageously fought right alongside them. I kept Josh up to date on what was happening in your life. We prayed for you and your parents. We hoped above all hopes for a miraculous cure. Josh even had his classmates pray for you.

Then you had a fundraiser at Oaks Park Skating Rink with your friend, Chatten. It was good to see you. Good to roller skate and laugh. But you weren’t feeling well and we knew. We knew things weren’t good. Josh was sad when we left, because you were hurting. We knew you were dying. Eventually your parents made the decision to bring hospice into your home. And we waited while we read your updates. You had visitors come and read to you or take you on walks in your wheelchair. I asked Josh if he wanted to visit and he said no. It made him too sad. So we waited and we prayed and one evening you slipped away from this earth, quietly…peacefully. Our family all cried together and we hugged each other. We grieve for our loss of you. We grieve for the emptiness your parents now feel. We pray for your mom and dad, because there’s a hole in their lives, a Lesly sized hole. It’s a beautiful ache.

Dancing in heaven…sweet Lesly…

Sometimes angels come in dog form...

Our angel came to us recently in the shape of a four year old Australian Shepherd named Saucie. We had been talking about the idea of a “companion” dog for Josh for quite a while. As I began to research, I realized it could be years before we received one and Josh might not even qualify for a trained companion dog.

In the meantime, Josh’s anxiety at night grew more and more. Bedtime became a traumatic event. Eventually, we heard in Josh’s own words what the fear was all about.

“Mom, I’m afraid if I go to bed without you or dad I’m going to die in my sleep.”

“Josh, why do you think you might die in your sleep?”

“Because I’ve almost died so many times. First when we had the house fire when I was a baby and my sister saved me. Then I had cancer and almost died. Then I went into anaphylactic shock and almost died. Then I’ve had so many breathing problems and have almost died.”

I couldn’t argue with any of these incidents as they were all true. The house fire story was a little exaggerated, but I knew he’d heard the stories and they had set deep impressions in his soul. I reminded him that NONE of these situations were happening now. Our house was not on fire. The cancer is gone. I’m not giving him any medicine that will cause him to go into anaphylactic shock and he has a stable, solid airway through his tracheotomy.

“Oh” he replied as I watched his 9 year old mind take this all in. But still, bedtimes were tough.

Then we discovered a place where we might find a dog for Josh. As my husband called the breeder and spoke of Josh’s needs, he was told they had the perfect dog for us. And one day they drove out to the breeder’s home. The barn was lined with kennels full of barking dogs, but Saucie sat quietly. The breeder opened her pen and she walked straight up to Josh and sat down right in front of him waiting for him to pet her! Josh and my husband were stunned!

So Saucie came home that evening, Josh fed her and she slept the entire night on his bed and every night since. Gone is the fear and anxiety of death! Saucie follows him around where ever he goes. She watches out for him and waits for him to come home from school. She’s his buddy. She is calm, mellow and very loving. The other night Josh pointed out how she even lies down in the living room facing the entrance just so she could watch over us.

“She’s my guard dog, mom” he said with a smile. I would have never guessed what a difference a dog could make in my son’s life.

She’s an angel…

Why them? Why not us?

Two children who went through cancer treatment with Josh are now dying.
Why them and not us?

One is on hospice care.
Her parents wait for her last breath.
Her parents have fought for her with unheralded valiance.
Brave…they are so brave.
She is unforgettable.
Thank God for hospice.
Thank God for pain medicines.
What are they going to do without her?

The other you would never guess the disease is growing.
His mom shares the fear, the pain, and the loss of hope.
Looking for another plan, another clinical trial.
What if…
What if it doesn’t work?
The odds are so low.
The words…quality of life are paramount.
Number one…quality of life.
Making memories.
I listened to his mother.
She is assured of heaven.
I saw the tears.
I ache with tears filling my eyes.
I cannot take it away.
What would I do?

Why them and not us?

We talked of their future without him, their only son.
My heart breaks.

It never stops breaking.
Why them and not us?

Suffering, I can suffer.
I can do it.
I’ll gladly do it.
But not my child.
Lord, not my child.

Why them and not us?

Why do they have to watch their child suffer, Lord?

Why?

Just a little understanding please...

I am not stuck in childhood cancer. Childhood cancer is a reality of my world. The results of treatment on my son are harsh. They are a constant actuality of ongoing concern.

I am “moving on” though I may not be “moving on” the way you think I should.

I am not the same person I was before childhood cancer entered my son’s body. I will never be that person again. I am forever altered. I’m remorseful you cannot accept me as I am now.

I’m sorry I shared my heart with you. My inner struggles and honesty bothered you. You wouldn’t let me explain, interrupting me and telling me not to get defensive. I only wanted you to see how God miraculously met me at that moment of turmoil.

As your friend, I have attempted to listen to you, support you and encourage you. My mistake was assuming I would receive the same from you. From now on when you ask me how I am my answer will always be “Everything is fine.” I will not share my heartache.

I do enjoy “the moments” of my life more than you realize. Please quit judging me. Please quit criticizing me.

I will NOT walk away from the families who are still fighting childhood cancer. I am connected with them in a way you may never understand.

I will continue to serve with Candlelighters. Who else will show them the light of life after cancer treatment? Who else can empathize with a mother whose baby has just been diagnosed with cancer? After all, “It is better to light one candle than to curse the darkness.”

I will continue to give back what was so graciously given to me. Isn’t that what Christ would do?

Many of my friendships have altered since childhood cancer. You are one of them. I didn’t think you would be. I am saddened.

Just a little understanding please…

Almost 49 and holding...

I’m a December baby and 49 is fast approaching. I don’t mind birthdays, but I do mind aging. With age comes wisdom, but why can’t we get older and not have our bodies malfunction?

For example, I’ve always had 20/20 vision. “Eagle Eye” my family affectionately called me as I was often the first to see the deer in the forest or the hawk soaring through the sky. What’s happened? The print on those vitamins bottles are suddenly impossible to read! I find myself holding my book at arm’s length while my eyes take their time focusing.

I put off buying reading glasses for as long as I could, but one day I realized I wasn’t reading anything! So I broke down and bought a pair. I consoled myself with the knowledge they were the lowest magnification possible. The first time I wore them in front of my children, my youngest daughter cried in her most dramatic voice, “Oh, mommy! You look so old!” Gee thanks honey. I guess I failed at picking out the most “hip” looking pair.

One day I lost them while going through the security in an airport. I’ve attempted to replace them a couple of times, but the cost is ridiculous. I refuse to pay $20-$25 just to look OLD! So one of these days I’ll break down and head over to The Dollar Tree and buy a pair for a buck. In the mean time I ask my kids to read those tiny labels on food boxes or coupons for me. Hopefully, the trauma of mommy looking old has passed.

Then there’s my knee. When did it start hurting? I kept thinking it’d go away as I was hiking regularly. I iced it, I babied it, stretched it and I rested it. But it never got better. It just plain hurt EVERYTIME I hiked. So I broke down and bought a knee support at Walgreens. I tried it out today and it was a success. Thankfully it is winter and I can hide it under my long pants that way no one can see my weakness. My kids don’t know about the knee brace yet. I hope they can handle it when they find out.

I trust my good knee holds out longer. Then there are those other aches and pains: my hips and my lower back. Maybe my hips hurt because I carried five babies! Maybe my lower back hurts because my tummy is too flabby from having all those babies. Should I tell my children it’s all their fault? Either way, I feel like it’s a losing battle. Gravity and time certainly take a toll on these earthly soul houses.

Finally, my 9 year old son added the biggest insult to injury as he climbed into my lap just the other day. I was focused on my writing as I happily typed away at my laptop. It took a while before it dawned on me what was going on; he was gently and affectionately playing with the loose skin under my chin…my waddle! Until that very moment, I didn’t even KNOW I had a waddle!

“WHAT ARE YOU DOING?” I cried as I pulled away in shock. “Are you playing with my waddle?!” And he mischievously and lovingly smiled up at me and said, “Yes, mommy. I like it. It’s soft and squishy.” I felt my sense of beauty ebb away. Oh vanity, vanity. All is vanity.

Almost 49 and trying to stay there…