Perfect timing...

I always spend the ½ hour drive to Emanuel Children’s Hospital in prayer on the days I’m serving lunch to the families who have a child diagnosed with cancer. I ask the Holy Spirit to fill me that I might serve others as if I were Jesus, that I might have His words coming out of my mouth bringing His comfort, peace, love and support to a child with cancer, a sibling or a parent. Every time I serve lunch with my other volunteers, I see God working. I’m just one broken person empowered by Jesus reaching out to another broken soul. I’ve written about this in my blog before. It keeps my faith strong.

Last month I wrote a blog titled “I didn’t even ask him his name…” I had come home disappointed in myself in a number of ways, feeling as if I hadn’t measured up or God hadn’t stepped in. But as I read other people’s comments to my blog and contemplated that afternoon, I realized I had encouraged that particular family by letting them know my son was almost 5 years past treatment. I had shared a Ewings Sarcoma success story and I can still see that mother’s eyes light up as I told her about Josh. I now feel confident this alone was enough.

This month’s luncheon was overtly miraculous to me and I came home marveling at God’s timing. Last month I had noticed a mom who looked like the “walking dead”, but I hadn’t spoken with her. Please bear with me as I explain what I mean by the “walking dead.” As I’ve served with Candlelighters for a while now, I’ve come to recognize the various “faces” I see in the parents and the mother’s in particular, who have a child with cancer. The universal look is pain filled and sorrowful eyes. I’ve never seen one parent without it. Another look is a “deer in the headlights” stare. They are usually the ones in shock having recently found out their baby has cancer. Then there are the angry faces. They usually do not want to talk. The blissful/denial face is the parent who continues to smile and doesn’t seem to grasp (yet) the seriousness of this new journey. This parent usually puts their full trust in the doctors asking few questions about treatment or they have a uncanny ability to just “let go”. There’s the tear filled faces, the ones who can’t seem to stop crying or who burst into tears with one simple, innocent word or act of kindness. This is also the face I see when a child has relapsed or they’ve been told there’s nothing more they can do for their precious little one. And finally the “walking dead” is the parent who is emotionally and physically flat, exhausted with nothing left to give. I don’t mean any offense in my observations, there is no right or wrong, this is just what I see. And in fact I was at one time or another all of these “faces”.

So this month I felt led to sit across the table from this “walking dead” mother and I began to gently ask her a question or two. In a flat, emotionless, monotone voice she told me her teenage son had been in the PICU (Pediatric Intensive Care Unit) for 2 months now. He had been diagnosed with a specific cancer, had begun treatment and with no immune system had contracted a serious viral infection. He’d been on a ventilator ever since. With what she told me, I knew he shouldn’t even be alive, but here he was.

As I spoke a little about Joshua I mentioned his tracheotomy. And that’s when she said, still without any emotion, “Oh, my son will be getting a tracheotomy today at 3 pm.” This is when I knew why I was supposed to speak to her. I went on to tell her my experience with Josh’s tracheotomy, what she might expect right after the surgery and onward carefully weighing my words. Finally, when we were finished and she was ready to leave and go lie down in the “parent room” to rest, she said in her flat voice, “Thank you for speaking with me today about the tracheotomy. You’ve been a big help.” I answered with a “you are welcome” and went on to validate her terrible, difficult journey and as I leaned forward to hug her I noticed a single, silent tear slip down her cheek.

God’s timing…

Josh is 10 today...

As this day was fast approaching, I found myself feeling the startled amazement of the miraculous…Joshua has lived to turn 10 years old! And I stifled the urge to pinch myself! This was followed quickly with my eyes tearing up, which I’d blink back as I smiled wider.

Eternally grateful, I still have difficulty writing and saying the words, “Praise God for the miracle of Josh!” What does it mean for the other children who have relapsed or who have died? Do we praise Him when a little one breathes his last breath? Perhaps, only in the sense that their physical suffering has ended and with the belief they are in the Heavenly Father’s arms. There is no other meaning than if God heals one He allows the physical death of the other. In my mind I can’t seem to put the two together. My only concrete knowledge is we each have our own unique journeys in this life.

I know others who haven’t received their miracle. I grieve over Lesly who didn’t make it to her 10th birthday and all the other childhood cancer children who didn’t see their next birthday, whatever that number might have been. Internally, I SHOUT my gratitude with total joy and love to my God and I know He clearly hears me, but my mouth will not allow it to escape. I try, but somehow it feels cruel.

I am so humbled by Josh’s life. I feel unworthy, knowing I am no better than any other loving mother out there who desperately wants nothing more than to share her life with her child, holding him, correcting him, watching him grow to adulthood. I cherish this privilege other mother’s have had ripped from them.

So I get frustrated with Josh when he doesn’t mind me. I nag him about his chores and homework. I teach him how to handle his anger. I encourage him not to antagonize his sisters. I remind him to take his medicine and to eat healthier. I sign him up for the Childhood Cancer Survivor’s Program. I drive him to his activities. I invite his friends over. I correct him when he talks back. I take him to his many doctors’ appointments. And I hug him as my heart melts at his smile.

I rejoice completely and totally for my son’s life quietly thanking my Savior. I grieve completely and totally for the families of the children who are still fighting or who are gone.

He’s 10 today…

I didn't even ask him his name...

He was tall, but only 9 years old, the same age as my Joshua. His parents were foreign with thick accents. They mentioned his diagnoses…Ewings Sarcoma found in his thumb, of all places. Yes, the same cancer as my Joshua. But Josh’s had been found in his neck bone. Rare, his parents said. Yes, rare indeed I agreed with a nod of my head.

He was hooked up to the usual IV pole with bags of chemo and fluids. He munched away on his burrito. His head was bald. I told them of my son. How he was almost 5 years out of treatment. Their eyes lit up. 5 years! Then they mentioned their son had metastasis to his lungs as well. The cancer had already spread when they found it. My heart sunk. I didn’t even ask him his name.

I couldn’t.

I didn’t want to know.

Mets means a poorer prognosis, I know.

Maybe I won’t see them again next month. Maybe I will.

I’ve been serving lunch once a month to families in the hospital with children who have been diagnosed with cancer for over a year now. Always I’ve gotten to know their names, their diagnosis, and their stories. But something changed with Lesly Foster’s death. Something changed with Gage’s struggle.

It’s as if I’m putting a wall up, barricading myself in to protect my heart. I don’t want to know them well anymore. I want to serve, but I want to serve in a way that protects my emotions. How do I do that? Is it wrong of me? Selfish perhaps?

I thought about our conversation later. I was startled I hadn’t told them about E-SARC and all the other resources I know of for our EWS kids. Why?

I guess I need a reprieve. A break from the heartache. I hope it’s short-lived. I hope strength or hope or whatever it is I need returns.

I didn’t even ask him his name and I’d NEVER done that before…

Dear Lesly... (2)

Your graveside service and celebration at C.H.A.P. (Children’s Healing Art Project) was wonderful. You are so loved Lesly. I was honored to help with your flowers on Friday. Frank had a huge picture of your beautiful face with a pink foil covered Styrofoam frame. We covered the frame with pink flowers. Your mom calls it your Buddha picture! J We also made a huge “Happy Sun” out of flowers and made buttons for everyone with your “Happy Sun” art work.

I was blessed to visit with your parents. I hadn’t seen them since you’ve left. The hugs we shared felt warm, strong and powerful. We talked a lot about you, how we miss you, how wonderful it must be for you to be without pain, to run and play in heaven. They seem to be doing ok, but I know it’s not easy. Your mom and I have made plans to go hiking together. I’m going to bring Josh’s dog and she’s going to bring your dog! I think they’ll have fun together.

It was cold and rainy throughout your graveside service. A lot of people were there. Doctors, nurses, friends, family, your teachers and school counselors, your chemo pals… We stood in the rain huddled together crying because we miss you and laughing at the many wonderful stories we heard about you. Stories like “Burn Barbie Burn”, your consistent, unique artwork of “Happy Suns”, your kindness, feistiness and fun nicknames for people you love like Mr. Bossy, and Dr. Shorty Pants. Whenever I think of you, Lesly, I hear your infectious giggle.

Frank told us to go ahead and cry, but that when we went to C.H.A..P. we were to laugh, party and celebrate your life! So that’s what we did! Your mom picked 14 kids, kids that knew you, which included Joshie. They went into the middle of the “paint cube” and the kids all threw paint at your mom and dad! You should have seen them with their goggles and hats. The bright spring colors were flying! Your mom and dad were covered with beautiful colorful blessings! Then we all took turns getting “blessed” or “blessing” others by throwing paint. Paint was everywhere! It soaked through our clothes; it was in our hair, our ears, on our faces, our hands and our feet! It’s been fun bringing home a piece of you as we keep discovering a vibrant splotch of color on our bodies! We ate ice-cream Sundaes, and then worn-out and spent we came home. We ate our favorite meal in honor of you, cried a little more, and then went to bed with thoughts of you with your colors still present.

Your mom and dad went home with your aunt, uncle and cousin last night. They are going to celebrate Easter together and your cousin is getting baptized! I know you’ll be watching. It is so fitting that we celebrated your life the day before Easter and your cousin celebrates her new life in Christ on Easter Sunday! Easter’s will never be the same for me, Lesly. I will always think of you when I ponder Christ’s resurrection. With paint still in his hair, Josh wore your “Happy Sun” button to Easter Service.

I’m so comforted knowing God sent you to your parents to be loved and cared for. Your journey was difficult, Lesly. At times it was excruciating. But you had amazing parents. They allowed you to be true to whom you are, they fought for you for five years, and they taught you right from wrong not allowing you to be rude or selfish. They are so strong they have so much more to give. Your mom spoke to me of her excitement to give to others returning what has been given to her and you and your dad. Incredible.

Often throughout the day I would look at your parents, Lesly, and think that could be Don and I. We could be celebrating the life of our young son, but we aren’t. I don’t understand why, Lesly. Why have we been spared that supreme grief? Why weren’t your parents spared? Why is Josh here? Why are you gone?

Good-bye Lesly…enjoy your new life…

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…