Tuesday, April 8, 2014

The Depth of Daniel

In May of 2012 I decided to make a volunteer commitment to the Children's Cancer Association. Looking back I can say that this decision has forever changed my life and the person I have become. While it would take a novel to capture the entire essence of my little chemo pal; let me attempt to capture the depth of Daniel in my blog...

The very first time I met Daniel it was almost his second birthday. The advocate from the Children's Cancer Association met me at Doernbecher Children's Hospital with balloons and a smile. We chatted a little as I was very nervous and didn't know what to expect. I had volunteered before on other projects for a day here and there. However, I had never volunteered on this level for a commitment to see a child through their cancer treatment. I had so many questions like what if he doesn't like me? What am I supposed to say? What do you say to the parent in the face of a diagnoses that your child has cancer? My CCA advocate explained to me, just be yourself. Still feeling awkward and nervous we were off to the children's cancer center to meet Daniel. I have no clue what to expect.

When we walked into the room there was this little boy dressed in a hospital gown, hooked to the IV machine. He was sitting up in the middle of his bed playing with his toys. Daniel's mom was welcoming and kind. We began our journey together and we just clicked. This meeting, this connection, it was meant to be. The advocate introduced me, hung out for a few minutes, and then left us so we could begin to know each other. I started to learn about Neuroblastoma Cancer from Daniel's mom. She explained he was at stage 2B and he was tolerating the chemo okay. After Daniel's mom and I got the serious stuff out of the way all he wanted to do was play with his balloons. So we played and he showed me his other toys. I was off to a great start with this volunteer job I thought as I left the hospital. Little did I know the depth of Daniel...

Daniel's mom continued to bring him to his treatments as he went from Stage 2B to Stage 3 and we continued to grow our friendship in the midst of this disease. For me it was no longer a volunteer job, it was being there for Daniel. I learned that some of Daniel's favorite things were Mater from Cars along with Max and Ruby. I didn't even know who Max and Ruby were and had to google them to educate myself so I could have conversations with Daniel about these characters! Daniel's mom & myself laughed about that as I was educated in toddler cartoons.



Over the course of a few months my visits to see Daniel grew into something so much more. I desired to go see him, play with him, just to spend time with him and his mom. We looked forward to seeing each other and hanging out. I was only required by the Children's Cancer Association to visit about an hour each time but I didn't want to leave them and sometimes would stay three or four hours. Something beautiful was happening.



As time went by and Daniel would have to go through radiation, chemo, tumor removal surgeries, stem cell transplant surgery,  then back around to the chemo again. Some days were better than others but it never failed to amaze me that as I was visiting with Daniel he would find some way to make me smile. Wait a minute...wasn't I there to make him smile? Even at Daniel's young age he had a way about him that took a difficult situation and made it better. He would smile in the face of being sick from the chemo treatments and he would laugh when you knew he was feeling awful. Daniel would take that hospital room and make it his playground. Everyone from the doctors, nurses, to hospital aides knew who Daniel was. It is my belief that they came to see Daniel thinking they would make him feel better but it was always Daniel who made us feel better and would send us on our way with that proverbial goofy smile. A smile that only Daniel could plant on your face.

After a year and a half of treatment Daniel went into remission. We all thought this is great! He is through the worse, he has this terrible disease beat, and off he went to his home on the West Coast.  We kept in touch and about about three months went by then I received a call from Daniel's mom that the cancer had returned. This news broke our hearts as we had hoped for a miracle. We just couldn't understand why this was happening.

Daniel returned to Doernbecher Children's Hospital to start on more chemo treatments now he was in Stage 4. Since the cancer had moved to his brain region he also now was having seizures. Throughout this entire experience Daniel's mom was always there by his side. I have never witnessed a strength like hers. Daniel's mom when faced with this entire situation could have crumbled but instead she faced the challenges with grace, persistence, and determination. A force that only a mother could have when fighting for her child's life. Daniel's mom never once thought about herself as she continued to make sure that she was doing exactly what was the best for Daniel. I stood by and watched in awe of the internal strength she has. I am blessed to have witness such an intimate part of her.

Over the course of the next few weeks Daniel's family gathered around him and stayed close to him. From his parents, his older brother, to his grandparents; we were told the treatments were no longer working and the doctors advised us of the process in which we did not care to learn about. His family never ask me to leave when the doctors were explaining very personal details concerning Daniel to them. I was no longer a stranger. I was no longer a volunteer. I was blessed to be someone in Daniel's inner circle of life.

About two weeks after Daniel left the hospital he departed this earth to go make Heaven his playground. In one respect I was so happy for Daniel as he would have no more pain or surgeries. On the other hand my heart broke for his family at the absence of him in their home. I continued to pray for them and stand firm in my faith that Daniel was free of pain and in Heaven.

In the next three weeks I received an invitation to a memorial service for Daniel held by the firefighters in his local area and firefighters all around the United States. Daniel had become an honorary firefighter and his facebook page (https://www.facebook.com/HFFDaniel) had reached thousands! The response was
amazing and the results that were shared at Daniel's memorial were miracles to say the least.

In the midst of everyones tears and our mourning for the loss of Daniel at his memorial service something awesome happened. A firefighter shared a story of a teen who was contemplating suicide but they saw Daniel's facebook page and read his story. It is because of Daniel this teen decided to chose life, it is because of Daniel a life was saved. The other story that made my heart leap for joy at the memorial service was Daniel's dad. He had turned away from God because this was not the first child he had lost. I can't imagine the suffering a parent would feel at loosing two children. However, in true "Daniel fashion" his dad said at the memorial; "Before Daniel passed he turned me back towards God." This is what I am trying to put into words on paper to share with you. This is the depth of Daniel.

The last time I was with Daniel in the hospital he was playing, laughing, and smiling. He was everything that I had grown to love and care for all wrapped up in this beautiful spirit. Before I left I asked if we could pray together and Daniel's mom said yes, so we bowed our heads in prayer. I leaned over close to Daniel and we begin to pray. As I am finishing up the prayer I open my eyes before I said amen and there is Daniel staring up at me praying. He is smiling at me for all he is worth and for a brief moment I saw Jesus in his eyes. It is a moment in time I will never forget.

Even though Daniel was only with us for three short years he touched the lives of so many people near and far. His life held purpose, his purpose was bigger than we could have ever imagined, and his memory will live on forever.

There is one more story I would like to share and it is that Daniel taught me to love. At a time when I was just going through the motions he reached out, took my heart, and walked right on inside. I cannot even begin to touch the surface concerning the depth of Daniel.

1 Corinthians 16:14 

Let all that you do be done in love.