I remember the day we got the call. It was a busy Monday evening and I was making dinner. Steve had just walked in the door from work and the kids were doing homework. It was a typical crisp, fall evening. My phone rang and on the caller I.D. it said Primary Childrens Oncology. My heart dropped. To be honest, it always did when that name popped up on the caller I.D., but Hayes had just had an MRI and a permanent shunt placed. He had been vomiting a lot so I was worried they were going to have us check Hayes back into the hospital and have him observed. I didn’t want to go back. I hesitantly answered the phone and there on the other end was the all too familiar voice of Hayes’ oncologist, Dr. Bruggars. The kids were loudly playing in the kitchen behind me and I heard the doctor ask if I had a second to talk. I told her that I was listening and she continued on with our conversation. She asked me how Hayes was doing and I downplayed his vomiting. I selfishly didn’t want her to have us come in because I knew it couldn’t be that big of a deal. Thanksgiving was 3 days away and I wanted our family together for the holidays.
I remember so clearly, she told me, that they have been looking over Hayes’ MRI and the information she had to tell me couldn’t wait. She explained that Hayes’ cancer had returned. I immediately dropped to my knees. Never in my life have I collapsed in fear, but in this moment I dropped to my knees, at the foot of my kitchen stove in complete horror. I listened as she continued and the tears began to flow. It was at that moment that Steve walked in and found me on the kitchen floor crying. He of course began panicking. The kids ran in to see me and I am sure the image of their mom shattered and collapsed on the floor will be an image that is seared in their memories forever. Steve asked me what was going on and I mouthed “it isn’t good” as I let out a moan of pain. Literally, pain, I felt actual pain in that moment that had taken me to my knees and I was trying not to throw up. Steve shuffled the kids out and returned to my side and rubbed my shaking body as I cried and listened. He didn’t know the conversation I was having but he knew it was awful and he began to quietly cry next to me.
I vividly remember thinking, well, we did it once, we can do it again, we are fighters, but then she broke me down further. She said that the area that the tumor was located was in an area of the brain stem where surgery was not an option. She explained that she didn’t know how long Hayes had. Chemo was not an option and we could try radiation to buy some time. But that is all it was, buying time. I remember her saying she was worried about him being uncomfortable and dehydrated and wanted me to have him admitted to get him on fluids and pain management meds. My hands were over my face and I writhed on the floor, angry and devastated in utter heart broken tears. She said they were getting a room ready for him in the cancer unit and to head up as soon as possible. I don’t think I said a word, but she definitely heard my crying moans in the background. She ended the conversation apologizing. She said she was heart broken too.
The phone clicked off and I dropped it to the floor and let out all the wails I had held in during our one way conversation. Steve picked me up and sweetly told me we needed to talk in our room away from the kids so that they didn’t have to be scared. He carried me up the stairs and set me on the bed. The door closed and I began hyperventilating as I told him the news through shallow breaths and tears. I remember so clearly what I said. The first time I had ever said the words, “Hayes is dying.” For the first time ever I realized I didn’t have much time left with my boy. The week before we had been in Disneyland and now here we were, 7 days later, realizing that our perfect baby boy was quickly preparing to leave his earthly body and we just had to watch and wait. There was nothing we could do to fix it.
I remember asking Steve, what was the point of this past year if all it did was lead us to this point, having to let go of our precious boy. I couldn’t bear it and anger rushed into my heart. I was angry at God because I had had so much faith that Hayes was going to get better, that he was going to live a long boring life. My faith seemed to make no difference in the outcome. I knew I could never forgive God for taking my boy.
We packed our bags and through the tears made one of our last trips up to Primary Children’s hospital. Hayes was very uncomfortable and now that we realized it was serious, we were desperate to get him comfortable.
We walked through the doors of the cancer unit and were welcomed by the familiar faces of all the nurses we loved. They had heard the news and they greeted us with tears and hugs. I am sure they had seen this so many times before but they made us feel special and I appreciated the love that they showed for Hayes. Hayes had left a mark even on the nurses that see these sick kids everyday.
We turned off the lights to let him sleep and squished onto the teeny little pull out twin bed for parents. We held each other and cried. We cried and cried and hugged. I remember when we finally spoke and for the first time in a year of fighting, we shared our fears honestly. We realized that to protect each other, we had never been completely honest and had always just reassured each other that Hayes was going to be ok. When deep down, my biggest fear during all of it was that if we lost Hayes I would lose Hayes and Steve. I never worried that I would lose Steve physically, like Hayes, but I was scared to death that Steve was never going to be ok again. That I would never see him smile again. If we were going to lose Hayes, I needed Steve. I couldn’t do it alone.
I remember Steve telling me, “You know what the point of all of this was. The point was that we got the best year of our lives. It was a gift. It was a gift from Heavenly Father. He did not forget us…he gave us the gift of Hayes!” In that moment the anger left me! I felt a rush of sweet gratitude. A gratitude I had never felt before. How lucky were we? Some people live a lifetime and never have the chance to meet, let alone love, a warrior like Hayes. He was our son and a part of us! Forever!! We were heading into complete devastation still, but it didn’t take away the fact that he was a gift! Hayes was a gift to the world! Our family was going to be ok, with Hayes watching over us from heaven.
For those that question our motives in life and question how we can possibly be ok after such a heartbreaking loss, this is why. Hayes is our reason for everything. He continues to be a gift and we will continue to share him with the world. He is our motivation and at those moments I ask myself why, he is there patting my back and telling me to keep going. This is all for him. He wants us to change the world of childhood cancer and I refuse to stop until that happens.