Davis had a wonderful birthday. The celebrations started last Friday and ended a couple of days ago. On his actual birthday, July 10th, Kyle and I were in St. Louis for a farm event, so Davis and his sister spent the day with Kyle's folks. They were in heaven. Grandma and Grandpa Coffey filled the day with fun activities that really made Davis' day special.
As most of you know by now, Davis' roommate Cory passed away on the evening of Davis' birthday. As soon as I found out, I texted my mother-in-law the news and asked not to pass the news along to Davis. Kyle and I wanted to be able to tell him and help him if needed. So on Wednesday morning, we sat down with Davis. He already knew what we were going to say and dismissed the conversation entirely. Davis is a thinker, and I know he processes his emotions (sometimes poorly) at his pace and in his way. I know that he truly believes that he is invincible, and I am pretty sure he thought that kids don't die from cancer - at least not the kids he knew. And even though he knew Cory wasn't doing well, he honestly believed he would get better. I knew Cory's death would have a profound effect on Davis. We respected Davis' right to sort things out, and we gave him space to do so.
Davis has been struggling with headaches and belly aches for the last couple of weeks, but we have seen an increase in these symptoms in the last week. He also has been complaining of being tired a lot too. We spoke to the doctor about this during chemo last week, and she contributed it to allergies and heat. The symptoms persisted - even worsened - this week.
Thursday, Davis had to have his billirubin, AST, and ALT tested. If you remember, last week his AST and ALT (liver function) were a tad high. Thankfully, the AST and ALT have come down, but his billirubin was up. The numbers are still within the Ok range for his chemo, so no more tests are needed until August.
In the spring, Davis struggled with some behavior issues (talking back, yelling, refusing to do what we ask, etc), and while they are not totally gone, they are much better than they have been. On Thursday evening, a side of Davis we thought was behind us emerged. He flipped out over things we would consider routine, non-issues in our home. He became very upset when Kyle informed him that we do not watch TV until chores are done or when we eat supper. Davis refused to eat and wouldn't do his chores until the TV was on. It was crazy. He would curl up in a little ball and hold his hands over his ears and cry. He would yell unprovoked. Davis' poor behavior escalated, as did his headache and stomach ache, and I called the doctor. It was agreed that Davis needed an evaluation. So Davis and I got up at the crack of dawn on Friday when I should have been icing cupcakes and preparing my home for a birthday party and headed on down to St. Louis.
Not surprisingly, Davis slept the entire ride down (He does sleep or lay around a lot as of late). When we met with the doctor, I told Davis (as did Kyle before we left) that he needed to be up front and honest about his feelings and behaviors with the doctors. And he was. My heart was so broken as the conversation in the examination room unfolded. Davis told Caroline, a nurse practioner and a person with whom he is very comfortable, that he has been having headaches, belly aches, and sleeping a lot. I told him, "I know what you are thinking, Davis. Ask her." and he did. He said, "I think I am having a relapse, and . . .you know . . . .well, Cory . . . ". This is when as a mother I am so full of every emotion and no emotion. I wanted to scoop him up and my arms and tell him that it was going to be ok, but it's not ok that children die from cancer. I wanted to shake us both from this nightmare, but we aren't dreaming. I wanted to undo every bad experience and spare him from the realities of cancer, but I can't. I wanted to restore his childhood and the carefree peace of youth, but it's been broken - unfixable, it seems. I was sad that these were issues he felt comfortable telling his doctor but not me.
Caroline reassured Davis that there was no evidence to suggest that he was relapsing. He also explained to Davis that he and Cory's cancers were not the same, and their cancer journeys are not the same. She told him that he doesn't deserve to be experiencing all of this. All things he needed to hear from someone other than his parents. I think he has reached that age where everyone else knows better than we do. After Davis' team met for a discussion, it was decided that Davis' depression and anxiety has worsened. The symptoms he has been having the last week or two all point to that conclusion. The doctors adjusted his medication dosage, and it is their thought that once school starts, we will see major behavioral improvement. Two reasons: medicine should be working better by then, and Davis needs structure and a bunch of activities to stimulate his mind so he doesn't worry so much.
In the last two days, Davis has not complained of a headache or tummy ache one time. There's something to be said about peace of mind.
Friday night was wonderful. We had the family over for a huge birthday bash. Davis really loves spending time with his family, and to have them all over in his surroundings was a dream come true. We crammed fifty-some people in our living room and on our deck. After everyone had left, and he was sprawled out on the living room floor putting legos together, he kept saying, "That was so awesome. That was the best." I couldn't agree more.
We gave Davis the option to attend Cory's funeral. He opted out on Saturday morning. I was so thankful. After the emotional rollercoaster Davis had been on over the last couple of days, I was fearful of how he might react to the funeral.
Kyle and I knew that the funeral was going to be hard for us. But it was far more difficult than we imagined. Over the last few years, I have stood by half-leaved trees as I watched families bury two of my students. I remember thinking that the pain I was feeling was like nothing else . . . unforgettable tragedy. I was so arrogant to think that attending this funeral would be similar. I remember Cory's mother blogging about how she shares some experiences and stories on the blog, but saves others for no one else to know or enjoy except for those who took part or witnessed them. She commented on how so many words of encouragement, private conversations, and expressions go unnoted. I agree with her. And while I blog and expose so much of our lives, I reserve a certain amount of memories I hold sacred. Cory's funeral was sacred, and it pushed past the realm of long-term memory, and etched and seared itself on my mind and heart forever. Aside from all of the obvious reasons, we are forever connected and paralleled to this family in some way by cancer, by room 918. We will pray for this family every day of the rest of our lives.
Please keep Cory's family in your thoughts and prayers. They are starting a new, equally difficult journey. Please pray for Davis. He has endured more than most adults in his eleven years, and he is very fragile.
We will keep you posted.
