Day 2 - The Diagnosis

Now that you've experienced the first day with me, I'm moving on to the second day.  We hung out in our room and watched Tangled.  Kayla's sight was still not very good, but I think she could kind of see the TV, although I'm not sure how well.  Doctors came in and out asking more questions and doing more examining.  Her main doctor (Dr. Price - awesome lady) told me that they were taking all of the information they had gathered together and were working as a group to figure out what was going on.

Sometime during the day, Dr. Price came in and told me that they were thinking that she likely had a condition called neurofibromatosis (NF).  They were going to send off blood work and it would take 5-6 six weeks to get the results.  The only thing is, if it comes back positive, she has it, but if it comes back negative, she might still have it, she is just so young that other symptoms might present themselves as she gets older.  We are still waiting on the results. . .

We had a genetics counselor come in and talk to us and map our our family tree, because NF is usually a genetic disease.  There is absolutely nothing in both Bryson's and my family.  So, the other way to get it is to just having a certain gene randomly mutate.  If she has this, that is most likely the case.

We met with a neurologist, too, but honestly, I can't remember what all he told me.

Then, out of the blue (it seemed to me, at least) we had an oncologist come in and talk to us.  He told us that she did have tumors on her optic nerves.  He was very interested to see what the ophthalmologist was going to say (we were going to see her that afternoon), but he starting talking about the possibilities of doing chemotherapy and that really caught me off guard.  I was definitely getting the idea that this was not going to be a quick fix and we'd all go home like normal.

Kayla and I went to see Dr. Lee, a wonderful ophthalmologist.  She looked at the MRI scans and did her best to examine a 4 year old girl who does not like to answer any questions from anyone. . . By the time we were done, she was talking about chemotherapy, too.  My head was spinning by now.

So, we went back to the hospital.  By the way, Bryson had been at the hospital as much as he could, he had to leave for different court appearances and stuff.  Dr. Hansen, the oncologist, came back in and started to talk to me, but asked if Bryson would be back so he could talk to us both.  I called Bryson and he came right over.  Dr. Hansen came in and told us that because she did have tumors (They are all along her optic nerves, tangled with nerves in her optic chiasm, and all of the way back to her hypothalamus.  It is more a mesh of cells than a ball.), and because her sight seemed to be deteriorating so quickly we needed to start chemotherapy possibly that night (he's telling this to us at about 5:30PM), or in the morning.  He said that he couldn't guarantee that her eyesight would improve, but they just wanted to preserve what she had left.

Dr. Hansen spent  a lot of time talking to us and going over the schedule of chemo that Kayla would be doing.  She would have treatments every week for 60 weeks.  He also went over a ton of side effects.  Lovely.  Hair loss and fertility stuck out to me the most.  I was totally going through the hospital's supply of Kleenex.

After Dr. Hansen was done, Dr. C. . . I can't remember her name. . . came in and talked to us about surgically inserting a port into Kayla's chest so that she can be accessed more conveniently for her chemo treatments, IV, blood draws, etc.  She explained to us all about how she was going to do it and where she was going to put it and why and that the surgery was going to be at 8:30 in the morning.

After all of this, the nurse came in and told us that we were moving rooms.  So, we packed up and moved into the Pediatric Oncology side of the floor.  That was another take my breath away moment.  This was really happening.

Kayla refused to sleep in the bed, so she slept in the little couch-thing on the side of them room.  She also insisted that I sleep there with her.  Let's just say it was another sleepless night.  At about 4AM I had my first breakdown.  It was when I really let the tears flow.  And then I felt better.