Now What Do We Do?

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Now What Do We Do?

Yesterday, I shared the beginning of our ordeal as the start of Childhood Cancer Awareness Month. It is very important to share stories and make people aware of the reality of childhood cancer. It is ugly and it is real and yes, it does really happen.

What Next? We don’t know what kind of ugly cancer is inside our baby. (I don’t think he knows he’s sick) And the “blockage” was not a blockage, it was the tumor. A tumor so big it completely covered his left lung, so big it took the place of his left lung. The tumor had collapsed his left lung and was pushing his heart and trachea over.

How could we not notice something like this? My daughter has those kids at the doctors on a semi-monthly basis. I wanted to scream –“How did this happen!”

They tested, and tested and guessed. Maybe it’s this, maybe it’s that. A week went by, still no real concrete answers. We were scared and we were frustrated. Somebody needs to do something and figure this out. Get that ugly thing out of our baby.

I had left home and my job in the middle of the night and it had been 10 days since I had been home. We were told it was going to be a long process. It was now just a week past Thanksgiving going into December. I decided to go home and regroup.

My daughter and her husband were notified that the team of doctors had come up with some answers and wanted a conference with them. I told the kids to call me and put their cell phone on speaker so I could be at the conference with them.

I do not have words to describe the “news” we received from our medical team. Nor do I remember much detail. But I do remember and will never forget hearing my daughter’s reaction.

There was nothing they could do. I was too stunned to speak – I couldn’t even make a sound. I could barely hear the doctors speak over the anguish coming from my daughter. The tumor was inoperable. Too Big. It was connected to tissue and too many areas of his little body. He would not survive surgery. The type of tumor was so rare they didn’t even have a name for it. They didn’t think it would respond to chemo. There was nothing they could do.

There might be a very slim, small, unlikely chance.  We could bring him to Children’s Hospital Boston. They have a world renowned pediatric cancer department. If anyone could help him and again the chances are slim, it would be Boston. They looked at the biopsy of the tumor and they were willing to test different treatments on him.

Experiment. They want to experiment on our baby. Uggh, I’m going to be sick.

My son-in-law inquired when we would be able to take the baby to Boston. The team thought maybe in a few days. My daughter said NOW. Daddy and Drake were on their way to Boston via ambulance within the hour. My husband and I drove to Burlington, Vermont which was about 2 ½ hours from our home town to pick up Mommy and her sisters. I had only been back at work a few hours when I left again. Boston was another 3 ½ hours past Vermont.

More testing, more waiting, more unknown. At this point we are starting our second week of December. My daughter wants to know if Drake will be spending his first Christmas in a hospital. I was wondering and begging for this not to be his only Christmas.

Boston doesn’t want to waste any more time testing. They want to start chemo and “see what happens”. So do we. If this ugly tumor grew that big in his short 10 month life, how fast is this growing? This can’t be happening. It is too unreal -feels like sci-fi! They want to do another biopsy of the tumor so they can test different therapy outside the body. Good idea.

This biopsy was a little more evasive. Drake is growing a little weaker every day and he doesn’t bounce back quite so quickly with this procedure. He’s a baby. There is no reason for this. He can’t speak but I know what his eyes are saying.

As I said yesterday, my long story short isn’t working so well. I need another break and you probably do too. We have come to the conclusion that Hope is our only hope.

Toodles – Blog Happy!

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” Yesterday I dared to struggle,
Today I dare to win…”

~ Bernadette Devlin

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