Abigail's regular quarterly MRI was scheduled for November 30th, but on October 18th, she had a seizure. We were at home and I was watching Emi Seegmiller (it was the days her parents were loading up the moving truck, so I had their kids). Abigail started screaming that her stomach hurt around 2:20 in the afternoon. She screamed and screamed off and on for about 30 minutes, then suddenly her eyes started rolling back in her head, she was all dazed and couldn't finish a sentence or speak to me clearly, so I set her on the couch and called Andrew at work in Amarillo. While we were on the phone, Abigail just slumped over and passed out on the couch. I called Andrew's sister Lisa (a nurse) to ask what I should do. She suggested I try to wake her and take her to the hospital if I couldn't wake her after a while.
For about 20 minutes I was repeatedly trying to wake her up with no success, then suddenly she just sat up on her own and was acting fine, like nothing had happened. I continued to monitor her all afternoon, but I was also had all the Seegmiller kids by this point. I talked to the pediatrician and she suggested I call the neurosurgeon. Since she was acting fine after waking up, I didn't take her to the hospital, but the neurosurgeon did say he wanted to move up her scheduled MRI to see what was going on in that head of hers.
So, with all that said, the MRI was moved up to Nov 8th. We did this one through the PICU again, although it did not go very well.
It took the nurse 40 mins to get an iv in, including 3 different attempts and 2 blown veins. Lots of blood. :( Abigail was so brave, but it wasn't easy!
Once they got her sedated and down to the imaging room, they told me to expect about 45 mins, which is normal for her MRI's at this point. I sat in the waiting room for an hour and a half, getting pretty worried by the end. When they came and got me, all they would say is they decided to do additional images once they got started. It was way to reminiscent of our experience with her first MRI, almost exactly a year earlier, for my comfort!
After she woke up, she had her usual snack (chocolate milk and fruit loops) before we headed home!
The neurosurgeon's office called a week later, on Friday the 16th, to say that the tumor was growing. The irony was not lost on us - it was November 16, 2017 when we had her first MRI and discovered her tumor.
On December 3rd, we met with the neurosurgeon and oncologist to discuss next steps. The neurosurgeon did not recommend another surgery at this point, due to risk. He said so far, the growth is minimal, about 2 mm. The oncologist told us chemotherapy is the best option for treatment at this point. First, they are having tissue from her surgery tested for a specific mutation within the tumor. They did a generic test for it right after surgery, which was negative, but are now having it sent out for more specific DNA testing. If the mutation is present, there is a form of oral chemo that is very effective in targeting it. However, the oral form is only available in pill form at this time, although they expect to do a liquid trial in the next 6 - 8 months.
If the mutation is not present, the best option is a weekly chemo treatment for one year. They'd put a port in her shoulder to administer the meds through. It'll be late December before we get the test results on the mutation, so we're still waiting to hear on that.
The oncologist doesn't want to start either treatment just yet, though. He wants to continue to watch the tumor to see how quickly it grows before we move forward. We're fine with that! So for now, we'll continue to do the quarterly MRI's until the growth reaches a size or speed that we need to start the chemo.
This girl is one tough cookie and we love her so much!
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