Besides the initial "your daughter has a brain tumor and we need to operate in the morning" surprise, I haven't really been panicked by any part of her care or treatment in the last year and a half.
Until two days after her May MRI.
The MRI was on Tuesday, May 7th, and this time Daddy took her! It was an MRI of firsts - we tried the other Amarillo hospital, BSA, for this one (after February's disaster at Northwest) and had a great experience! Also, the doctors decided to try to let her do the MRI awake and she held still and had no problems! Yay for no sedation!
Of course she didn't enjoy the IV placement, but they got it in her hand, wrapped it up, and she did great after that!
For doing so well with her poke, she got a happy meal and McFlurry!
Thursday morning I got a call from the oncologist's office. Dr Kaylani had been trying to get a hold of me the day before, but I think had been using the wrong area code. I still have my Utah 801 area code and code here is 806 so I think he was trying to use that? Anyway, when we finally connected on Thursday he said her tumor was growing and that the time to start chemo had arrived. But on top of that, it appeared that there was fluid building up in the brain. He'd over-nighted the MRI images to Lubbock to Dr. Belirgen, the neurosurgeon, and was waiting for his response. I was still feeling pretty good at this point.
It was later that afternoon, maybe 4pm, when he called back and said I needed to bring her to Lubbock that evening for surgery in the morning. He didn't have many answers, and said Dr. Belirgen would explain when we got there, we just needed to get in the car and go. Insert Sharon panicking here. Don't worry, I was calm by the time we got to Lubbock.
Andrew and I went back and forth and finally decided that I would take her and he would stay with the other kids. So we loaded up a quick bag and were on our way.
See you soon!
She loved that we went on a trip in Daddy's car and she got to ride in booster seat.
(Side note - I had a little typo as I'm doing the post and Eve's sitting here laughing at me that I accidentally typed "die" instead of "ride". TYPO! Don't worry, not a spoiler alert.)
They had us check in through the ER. We got in a settled in a room that night, complete with IV placement. Still no answers - no one seemed to know quite what was going on, or what her surgery in the morning would be.
She loved her ride in the wheelchair!
She quickly discovered how to call the nurses and anytime we needed anything, she was the one to push the button!
Less happy after getting the IV - but some ice cream seemed to help.
She got a little reindeer baby stuffed animal to sleep with that night. Lights out!
They came to get us for surgery bright and early on Friday morning and I still didn't know what was going on!
Finally in the OR staging area, Dr. Belirgen came and was surprised no one had explained things to me yet. Basically, the tumor's growth had obstructed the ventricles at the back of her brain, so instead of circulating around, fluid was building up in her brain. He needed to do an immediate surgery to relieve the pressure on the brain and also to create a new, artificial pathway for the fluid to circulate through. The procedure is called endoscopic third ventriculostomy (ETV) and he would go in through the top of her head. It was so good to finally know what was going on!
The surgery lasted about an hour and a half. Some sisters from our Lubbock ward came and sat with me in the waiting room - Sister Rasmussen, Sister Odell (my old visiting teacher), and Sister Stevens (the Relief Society president). It was so kind and meant so much since it wasn't even their responsibility anymore, they just came.
Everything went well with the procedure - Abigail's going to have another awesome battle scar!
I know, many angles of the same thing, but I couldn't not include them.
She was pretty miserable when she first woke up, but at least it wasn't like after her first brain surgery! Easier procedure = easier recovery!
Post-surgery, most of the day Friday, May 10th, was quietly spent and she didn't really eat anything.
Saturday morning's french toast tempted her, though! She had a lot of fun prepping the food, but then only ate a couple of bites.
One of the nurses took her to the toy storage closet since the playroom was closed on Saturdays and said she could pick anything! This was a huge storage room stuffed with tons and tons of toys, many of them quite large and expensive. Abigail chose a Captain American coloring pad. :)
She still remembered the wagons from her first surgery and was eager for a ride!
Gathering flower petals on our walk outside! They did an MRI sometime on Saturday to make sure the procedure had worked. Everything looked good, but since she wasn't eating much, and by this point, was throwing up, decided she should stay one more day for observation. So she was very eager to spend time outside!
Abigail never lets us forget to stop and smell the roses :)
This time around, there was a new surprise waiting in the pediatric wing!
Making her grocery list and getting all loaded up to run some errands! She did pretty well driving that all around the unit and didn't have too many accidents.
On Saturday, she went with the nurse to the snack room and brought back ice cream for me (and her) for Mother's Day. Sweet girl!
This time around she got actual stitches. So we had to go back to Lubbock in two weeks for a follow-up MRI and to remove the stitches. More on that in a minute.
Tired of being in the hospital and ready to go home!
As much as I <don't> love sleeping in the hospital, I was ready to go home too!
She didn't want to stay in her bed Sunday morning, so ended up resting on the floor....
Pancakes today!
More wagon rides to pass the time before they *hopefully* released us!
And another walk outside! That face!
The Sister Rasmussen and her daughter Cora had come to visit on Saturday and had brought Abigail a matching game. So we played a lot of rounds of that!
Choosing a snack from the vending machine to take home and share!
Skittles and oreos!
Finally got the approval to head home around 1pm!
A quiet two hour drive back home and Abigail was excited to be there!
We sure missed everyone!
On Monday, we walked and picked up Eve and Halle from school - Abigail was looking and feeling pretty good after a bath!
That week, my friend, Angie, from the single's ward where Andrew and I met sent Abigail a little care package. She's doing chemo and wanted to send something to brighten Abigail's day. Such a kind gesture.
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