Kaylee was diagnosed with a stage III favorable Wilms Tumor in June 2011. Wilms is a childhood kidney cancer that affects abt 600 kids in North America a year. She finished 6 months of treatment including surgery, chemotherapy, and radiation. In June of 2012 we found a recurrence in her lung through a routine CT scan, and are now starting the process over again. Although always a little behind, this blog is to document her story, for her, to remember the trials and blessings that have come from her diagnosis, and so she always knows what a brave little girl she is.

Friday, June 10, 2011

Waiting

They shouldn't call it a hospital.  They should call it a waitportal.  It is a place they bring you when you have lots of questions, and you must wait to get any answers.  At least that's how it is with tumors.  I knew it was a tumor before I got there, because the woman on the phone who called from the hospital said so.  I hadn't heard it called that before.  I knew the pediatrician told her it was.  He just didn't tell me it was.  I took the long drive to the waitportal to think about it. Dad took the long drive hoping it was all a misunderstanding.  Reese took the long drive to coo and suck her thumb. You took the long drive to watch a movie and keep an eye out for the river Dr. Peyton said we would cross.  When we passed over it you were surprised.  You thought we would cross it on a boat. 

It was hard to go to the Oncology unit.  Murals were painted on the walls of happy kids.  Happy bald kids.  They were pretty paintings, but they made my stomach hurt a little for you.  We got to your room and they showed us all the cool stuff.  They hooked you up.  They said they take care of you there, and they didn't lie.  When you asked for something, people took hours to search for it.  They never let us down. 

We met with Doctors and Surgeons who never seemed to have enough answers.  It was a lot of waiting.  Waiting for a CT scan, waiting for a surgery time, waiting to find out what kind of tumor it was, waiting to see what kind of treatments you need, waiting to see how bad it was.  All that time gave us a lot of time to pray.  Pray that the Doctors would find the problem. Pray that it wouldn't be too bad. Pray that it would be treatable.  Pray that you could handle it.  Lots of people wanted to pray with us.  LOTS of people.  I think half the world is praying for you.  I know people on the other half of the world are praying for you. We felt the prayers.  They were tangible.  They helped us alot.  They brought to pass miracles and tender mercies on your behalf. Thomas S. Monson said, "Fear not, brothers and sisters, for your future is as bright as your faith!"  Even though not knowing makes us scared, we have lots of faith, so we know you have a sun shiny future.

Dr. Stein met with us after your CT scan. The scan confirmed it was as they suspected a tumor. It was big and it was pressing against other organs.  Even when we prepared ourselves for the worst, we hoped it would have been a big misunderstanding.  No preparation makes hearing  your daughter has a tumor easy. He said it needs to be removed, along with your kidney, but will only be able to be removed if it isn't involving any other organs. If it is they will close you back up and wait to do surgery after some treatments. Dr. Stein says you need chemo either way.  Your dad and I cried for your long road ahead.  We cried because we couldn't think of you in pain. We cried because you were fine on the outside.  I asked questions. You sat by and listened while playing Hannah Montana on the Xbox. You understood that you needed a kidney removed and you wouldn't be able to eat on your birthday.  You were very mature about it.  And seemed fine with waiting till we got home to have a real birthday party.   We didn't have enough answers. We had to wait until after the surgery.

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