Arthur Fights the Dragon

Recently, I was asked to speak at a fundraiser representing Northwest Sarcoma Foundation.  The fundraiser was for a 22 month old little boy, Arthur, diagnosed with Ewings Sarcoma.  The community had come out in force to support him and his family.  It was great to see. 

Here is what I said:

Thank you one and all for being here today. What a great way to show your love and support to the B Family. I know they are grateful for each one of you.

My name is April Brenneman and it is an honor for me to be here with you this afternoon. I am a mom with 5 wonderful children and I have one grandson who is 2 1/2 years old. He calls me Mi Maw. And Pop Pop, my husband, and I have been married for almost 30 years. I volunteer for 3 childhood cancer organizations. One of them is Northwest Sarcoma Foundation and that's how I came to be here today. Melissa Hill, the Executive Director, and my good friend, asked me if I would be willing to speak to you all at this special event, Arthur Fights the Dragon.

And what a perfect title that is because Sarcoma is a Dragon. The Dragonslayer is a NWSF walking/biking event put on in Seattle and Portland each year. And that is why we are here today, to help slay the dragon called sarcoma and to help encourage, support, love and bring hope to the B Family.

In October 2004, I was just an ordinary mom living an ordinary life, when the dragon came knocking at my door. My youngest child and only son began walking bent over holding his head to one side like an old man. After a week of visiting various doctors and physical therapists, we ended up in the ER at Emanuel Children's Hospital late one night. Josh was in extreme pain. An x-ray exposed a tumor. Josh was diagnosed with Ewings Sarcoma. Like Arthur the tumor was in an unusual place for Ewings. For Josh it was in his c-6 neck vertebra. Like Arthur he was younger than the typical age of a Ewings Sarcoma victim. Josh was 4 years old. Like Arthur the suffering has been great and it's been the most difficult journey I, as a human being, as a mother, have ever had to face. There is nothing so terrible as watching your child suffer.

Joshua endured 14 rounds of intense chemotherapy. Did you know they give children stronger more intense chemo than they do adults? It's because their little bodies are young and fresh and can take more than an adult's body can. I was appalled to learn that the Ewings Sarcoma treatment protocol is the same one they have used since the early 1980s. There have been no new discoveries. No new drugs. Sarcomas are considered rare and are called orphan diseases therefore they do not get much research money. That is why I began to volunteer for NWSF, to bring awareness of sarcomas to the public, to educate, to raise research money, but most of all to support those patients and families who have to fight the dragon.

Josh's tumor was inoperable and during his chemotherapy he also had 31 proton radiation treatments in order to get "local control". All of this took about a year of being in and out of the hospital constantly. We'd be in-patient for 5 days of chemotherapy, then go home. Most often Josh would get sick with a fever, called neutropenic, and we'd go back to the hospital for antibiotics. When he got better, we'd go home and a couple days later it was time to go back into the hospital for the next round of 3 days of chemotherapy. That year was emotional, exhausting and very dark. I was in shock, overwhelmed with fear and anger. My four daughters were also deeply impacted as they watched their little brother struggle through treatment.

Once treatment was finished, we began to discover the damage done to his body by the radiation. Josh's throat was constricted and he could not eat by mouth for almost 2 years. Like Arthur he was given a g-tube and fed through that tube. His trachea or airway was also constricted and after two weeks of no sleep and calling 911 because his breathing had become so alarming, he was finally given a tracheotomy so he could breath. A tracheotomy is a hole in his neck that goes into to his airway and allows him to breathe through the hole instead of his nose and mouth. We also discovered his thyroid no longer functions and he takes thyroid medication. We then began giving him esophageal dilations about every 6-8 weeks. This is a sedated day procedure where his throat was stretched open at the narrowed point. After 38 of these procedures his throat has remained open and Josh is able to eat by mouth! Thank you God! We had his g-tube removed and Josh loves showing everyone the scar which he says is his second belly button.

This very month, August 2011, Josh is celebrating being 6 years cancer FREE! He is 11 years old, loves pizza, is a green belt in TaeKwonDo, plays airsoft and video games with his buddies and enjoys making obnoxious noises, you know...the kind of noises boys love, through the hole in his neck when he takes out his trach tube! His buddies think it's cool! And though he cannot swim with a tracheotomy and cannot play contact sports because of his weakened neck vertebra, he is a happy, healthy and sweet, well most of the time.

We've been on this journey for 7 years now. We have been forever changed as individuals and as a family. It has been painful yet joyful, full of heartache and laughter. We have seen people, even strangers reach out to us with love and hope in the most incredible ways. They have been the hands and feet of Jesus to us. We have been surrounded by a great team of professionals: doctors, nurses, Childlife workers, art and music therapists. We have met courageous children like Arthur, who touch our lives deeply and change us. We have met amazing families full of hope and strength. Sadly, we have had to say good-bye to children we've met along the way. And each time we grieve we discover sorrow and joy walk hand in hand. Heartache and happiness dance side by side.

 Josh is a miracle, Josh is a survivor and in many ways, Josh is older than his age, because of what he's faced in his young life. Recently, he made the decision to begin taking growth hormones because he tested GH deficient and was not growing as well as his peers. This decision was not made lightly as he knows GH make everything grow, even cancer. He is a brave boy and continues to face the dragon head on, but he does not fight alone.

And Arthur is not fighting the dragon alone either. As I look around at all of you here, I know Arthur is not alone. You are here for Arthur for his family. You are holding them up when they are weak. You are praying for them when they can no longer pray. You are giving them your LOVE, your HOPE and your FAITH. These are the greatest weapons of all when fighting dragons.

Thank you.

Vulnerability...

I made myself vulnerable again. Vulnerable to pain and possible loss. And I asked myself, is that wise?
I invited a mother and her two young boys over for an afternoon visit. We had met on Facebook on the Ewings Sarcoma Survivor page. When I discovered they lived close by, I invited them over. Slim, beautiful and young, her mother's heart was equally as lovely. And the boys were playful, liked Legos and dogs and snacked on Goldfish. She shared her story. I listened and shared a little too. We talked of our faiths, how hers strengthened through sarcoma and how mine wavered a little finally settling down to nice solidness.

And when they left, I thought I was fine, but I wasn't. And through tears I asked myself, is it wise to allow someone in? Someone whose little life and his mothers and brothers and fathers life bring the recognition of a shared pain and the possibility of death? Am I meeting another Lesly or another Gage?

And then the sermon this morning on Acts 11 confirmed it. "Invest yourself in the lives of others." The others being those put in your world and my world includes childhood cancer. I have no choice here. It's reality. Jesus calls me to love. It's my mission.

And it came to me, Jesus became vulnerable. Jesus had a mission.

And with my vulnerability comes my mission and it's called: And Jesus Wept.

John 11:35.

So I went further into my vulnerability and had this young family over along with a family visiting from Arizona. Another Ewings Sarcoma survivor family. Both boys have lost parts of their bodies. Both boys are full of strength, energy and life. Both boys have endured so much.

We painted together at C.H.A..P. They jumped on our trampoline. Slid down the Tree House slide. We ate and drank and laughed and got teary eyed. We marveled at our survivors.

The vulnerability was there, but so was something else...

 

Vulnerability...gratefulness...strength...an inseparable bond like no other...

Another sighting...

It has happened twice now and I've blogged about it before. Each time it's happened I've been stunned, almost to the point of holding my breath. Then emotion overwhelms me. But this time, after the moment passed, I felt joy and comfort.

The first time I saw Lesly Foster. (I wrote about it from my posting titled "Out of the clear blue..." dated August 2010.)

 This time I saw Danny Keagbine. We were in a Seattle hotel. Standing in the lobby, I looked up as an elevator door opened. And there he was, Danny with his bald head and glasses. He was built like Danny. He had pale skin like Danny and he had freckles like Danny. I stared. Josh and his dad stared. And then he smiled at us, that Danny smile. We were frozen, the three of us, until the elevator doors closed. As if the spell were broken, we looked at each other and said, "Danny."

I shared this story with Danny's mother. She felt comforted by the "vision" of her son. Then she told me the night before she got my message, she'd dreamed about me and my children. We were in the Day Treatment Unit of the hospital.

Interesting.

This sighting wasn't as painful as the first.

This time I realized it was like a gift.

The gift of a sighting...

Maggie May...

 I hadn't thought of her in a long time.  A dear little girl who died of a rare leukemia early on in Josh's treatment. Too young for Make-a-Wish, CCA planned a visit for the family to Rod Stewart's private home. You see, Maggie May was named after his famous song.

And on a regular day, I ran to TaeKwonDo with my grandson to pick up Josh. As we were leaving, a grandmother and mother approached me.

"We know Josh!" they exclaimed.

"You do?" I questioned back not recognizing their faces.

"I'm Maggie May's grandmother" the older woman stated.

"Oh" I sighed, "Maggie May."

Emotion engulfed me.

Immediately I was back in the hospital hallway standing with a family who were visiting. They chatted away, but I didn't hear a word. Transfixed and frozen, I watched Maggie May's mom push her stroller all around the pediatric floor. Maggie's bald head and round face smiling up at all the nurses. I knew she was saying good-bye. I knew her treatment had been stopped, because it hadn't worked. Maggie May was dying. The family visiting us were oblivious to the tears and powerful drama playing out just a few feet away at the nurses station.

"How are Maggie's parents now?" I asked the grandma and aunt.

"They are divorced. They both remarried and have started new families" answered the grandma.

"They are happy, though" the aunt added. "And doing well."

"It sure is good to see Josh" continued the grandma and they both smiled.  

"It's good to see the ones who have made it" the grandma said next, but her voice caught a little.

Maggie May...



Falling down a mountain...

On a sun drenched Saturday I climbed up a snow covered mountain to 8900 feet with my Summit Sisters. We studied the climbing route, ant-like dots of people striving for the pinnacle. I absorbed the view encircling me, which mere words cannot begin to describe, allowing its beauty to fill my soul.

Later our summit guide had us practice "falling" down the mountain with our ice axes. Sometimes called "self rescue" the ice axe is a mountain climbers tool to save themselves from sliding down a steep mountain face. We first practiced "falling" sitting down.

Slide, self arrest, stop. Easy.

Next we tried it on our stomachs head first. No problem.

Finally on our backs headfirst. Fail.

I attempted it four times and finally one of my Summit Sisters assisted by flipping my legs up, over and around. Embarrassing.

It just didn't feel intuitive to me, as if there was a gap between my right and left brain. I couldn't even seem to visualize how to bend and flip my legs around to the right position. It felt awkward. I couldn't do it without help. Once she helped me, I was able to get the feel of it.

There are parts of mountain climbing I love and there are parts of it I fear. That's why I climb. The love part is easy. The fear part is complicated. I don't like heights and steep mountain faces bring that out. I know the feeling of severe vertical exposure. Shaky legs, dizziness, and nausea usually show up. And the terror can take over my mind, if I let it. I pull inside myself. I focus on each step. I think of all the children I know fighting cancer and those who are gone. I think of what they've suffered. This helps, but doesn't extinguish it completely. Sometimes I enjoy the summit more after I'm safely down the mountain. Fear is a powerful emotion.

Through counseling I've come to the understanding I've been fearful all my life. It was an "ah ha" moment for me. Everything seemed to come together like puzzle pieces. And in that flash I understood myself in a way I never had before. Fear and anxiety were how I learned to survive. It became my coping technique and as my counselor pointed out, it worked... until now.

Much of the fear I learned concerned God and the spiritual world. Fear of not having enough faith. Fear of "opening the door to Satan " whether by accident or willingly. Fear of not reading my Bible enough. Fear of not praying enough. Fear of trusting or not trusting. Fear of letting my guard down. Fear of not repenting enough. Fear that I might be crazy. And in that "ah ha" instant I found out, I am not crazy. There is nothing wrong with me.


God gave me coping skills to keep me strong when I needed to be strong. But now I can let go. I need to learn to trust Him. Acceptance is huge. And when that fear overwhelms me, I allow myself to feel it. I acknowledge it by giving it a nod, but I don't fear the fear. Then I smile, because I know deep inside I'm ok. I am loved by my Creator. He wants me. He's with me...always.

Mountain climbing has a way of connecting us to our spiritual lives. I might not feel the intuitiveness of "self arrest" as I slide head first on my back down a mountain, but I can "fall" down a mountain with Him...