Our first Neurosurgeon appointment.

Haley was released from the Outpatient Clinic. We were on our way home to pick up everyone and go to the other hospital when my mom called. She started out with, “What do you know and what do you want to know?” I said I didn’t know a lot. She kept saying it is benign, it is benign. That was the best news of the day. She reminded me she used to work with some Doctors, nurses and staff members in Neurosurgery. That was comforting.

After dropping off kids and making sure the other girls were taken care of after school we were up at the hospital as soon as we could. My Mom met us up there to make sure we didn’t miss asking questions we needed to ask. From the moment I walked in and told them who I was here to see I could tell the entire office knew our situation and were waiting for us. We were able to meet with the Neurosurgeon. He tested her strength on both sides of her body but seemed to focus more on the right side which I did not understand. If I was thinking straight I would have figured it out, but I wasn’t.

He let us see the images from the MRI. When the first one appeared on the screen I was shocked! The tumor was HUGE on the left side of her head! I was not expecting to see something like that. How could what appears to be a healthy 2 year old who has hit or exceeded all her benchmarks have a tumor this large in her head?

Haley was going crazy because she wanted some milk and she wanted the IV out. Mom asked the Doctor if they were doing surgery today. He said no and she asked them to find this little girl some milk. She hasn’t eaten since the night before, except for a red popsicle to help wake her up from sedation and it was after lunch. She was so hungry and the after effects of sedation were not fun either. She was just unhappy. Once she got some milk and the IV out she was much better.

The Neurosurgeon told us a bunch of things that could be done but of course it depended on factors we weren’t sure of yet. He threw out words like multiple surgeries, chemo, rare, unique, Huntsman Cancer, oncologists. He wanted to consult with other colleagues to figure out the best path. We were fine to hear that, but it was hard to not have any answers and a long list of questions starting with, “How is this possible?” What stood out was that she is a very unique and complex case because of her age, the size of the tumor and the type of the tumor.

Jeremy asked after looking at a bunch of the scans, “how large is the tumor? Is it about the size of an apricot?” No. “A peach?” No. It is about the size of an orange. Just think about that for a minute. She is only 2! Her head isn’t that large to begin with. We still don’t understand how that is possible. How can she function normally with an orange taking up space in her head that shouldn’t be there?

We waited all weekend wondering what was going to happen and when it was going to happen. We discovered we have people in key roles of this process that are some how connected to us through a close friend or relative. That gives us some peace that Haley will be a person, not just a patient to them. Those key people are the people we are praying for whether there is a connection or not. That they will know what to do and be able to do those things to the best of their ability. We want Haley to come out of this as good as she is going in to this. Obviously her brain was able to compensate in some form, perhaps remapping, that she is able to lead a normal life. We want the same after surgery.

Neither Jeremy nor I feel any guilt of not “catching” this sooner. Sure she did a few things differently then our other 3 girls at her age, but aren’t all kids unique? Haley definitely has a unique mischievous personality. She is incredibly smart and friendly to anyone who will listen to her. She says “Hi” to everyone on walks, at the park, in the grocery store or anywhere we go. We had NO reason to think she had a brain tumor. Looking back we still do not believe we could have discovered this any sooner. She had to have the seizures increase in frequency for us to begin learning the truth. For that reason the many seizures are a blessing so she does not need to live with a tumor this large much longer.

I received a call this past Monday around noon, which was sooner then I expected, but I was so grateful it was sooner. I was told the surgery would be September 24th. Because she is such a unique case they are doing the surgery in a special operating room at the U of U afterward they will transport her to PCMC to the ICU. She will be there for roughly 4-5 days depending on how things go.