Today we live!

It’s been said that a person could live 3 weeks without food, 3 days without water and 3 seconds without hope.

We had a consultation with the surgeon for the port the next day and her actual surgery was scheduled for the day after. After meeting with him and feeling very uneasy and unsure about the port we decided to cancel the surgery. Cancel? “Can we do that?” I remember asking Greg. ” We can do whatever we feel is right”, Greg reassured me.  Okay, we had to be an advocate for Lane. They told us originally she would have a port that was completely under the skin. Now, in the office they are showing us some alien looking thing with tubes hanging out of her body. Um, no. It took every inch of me to digest the thought of a port at all…now you want my 4 year old to be ‘careful’ and ‘gentle’ with these tubes? No swimming or a regular bath for a year? No swinging on trees or jumping around without worry that it could dislodge?  After all, we still had hope right? The official pathology still hadn’t come back so we had time.

Had time.

The doctor called.

The official report has come back and it is Rhabdomyosarcoma. Only it’s not embryonal. It’s alveolar, the more aggressive kind. As Greg talked with the doctors I could hear him talk about the port ‘situation’. The doctor said the port that they were going to put in was worst case scenario. Greg asked,

“Are we at worst case scenario?”

“No, we have some time.” This ‘time’ he was speaking of was Lane’s review before the tumor board. That was on Tuesday. The tumor board was a panel of about 25 oncologist from the pacific northwest and they would have a consensus of the next steps for Lane. For the first time, we were told that surgery may be an option. Hope. 

If they could do surgery then she may not have to have radiation.
If they got the margins they needed.
Wait! Radiation? This wasn’t even an option. Wasn’t even discussed.
It didn’t matter because we were praying for a miracle. It was just that simple.
“Lord, please let the surgery be an option if that means no radiation”

Tuesday afternoon we got the call. The consensus was surgery. The board had agreed that it was the ‘right’ next step and after surgery then chemo.
Wednesday was the consultation.
Thursday was surgery.

Lane you are so strong. You are such a sweet gift to us. I admire your courage and your faith. I love when you name rocks and pick up moths. Thank you for making conversation with a series of giggles…that’s my favorite. God loves you baby. I don’t have many answers for your hurt except God’s working on it. God’s working on it my love.

Life was moving so fast and all we wanted to do was soak it up.

Indeed, today we will live.

2013-07-31 03.28.00


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