Sunday, August 14, 2011

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.