Brain tumor

Well, what do I even say?  Holland had been having headaches for about 3 weeks with vomiting for about a week and a half.  The headaches were practically nothing at first, but definitely progressed to the point that we acted on her pediatrician's advice and got an MRI.  Her pediatrician told us to call the office the next morning to get the results, so we were not prepared for when they brought her back from the MRI and they brought in a social worker and we were told that her doctor would be giving us a call - and the phone rang about 2 seconds later.  With the immediate phone call, we knew that they had found something and that it was not good.  We were told that we needed to immediately go to Primary Children's in Salt Lake (we were at the Riverton outpatient clinic), and that a neurosurgeon would be waiting for us.

Holland fell asleep on the drive up there, but when she woke up to go inside, she was inconsolable....which made the registration/check-in, taking vitals, and waiting for the doctor a miserable experience.  She was crying constantly and kept asking for food and saying that she didn't want to see one more doctor (when the past couple of days we had told her what was happening and she was actually ASKING to go to the doctor and the hospital b/c she wanted the headaches to go away).  Through all of the crying she kept saying that she felt better and that she wanted to go home.  Finally, the doctor came and we immediately asked if she could eat, to which she said yes and after some crackers and about 5 minutes, she was in a much better condition.

The doctor asked about symptoms and then showed us her MRI scan.  All of us were shocked (Bryan's parents were also there - they have been so supportive through this.  They wanted to wait for us at the clinic during the MRI scan, which turned out to be wonderful because they were there to carry all of our stuff, be there for emotional support and bring us dinner after we got the news of the tumor).  It looked like the tumor and cyst took up more than half of the left side of her brain (both the tumor and cyst are about golfball sized).  It shocked me (hopefully I can get a picture of it to put on here at some point).  The tumor was also pressing on the 4th ventricle drainage tube in her brain, which was causing hydrocephalus (extra fluid in her brain that was causing the pressure headaches and vomiting because the normal fluid that your brain makes couldn't drain.  So her ventricles are enlarged and she has a massive tumor and cyst in her brain on the cerebellum (the part of the brain that affects coordination/balance and also some speech).  They can't tell from the scans if it's benign or malignant - we won't know for about 2-5 days until the biopsy comes back.  Which we will be here probably about 5 days anyway - it just depends on how she does in recovery.

After that we got moved from the ER up to the Neuroscience Trauma Unit - basically to wait out the day until we could get Holland in to surgery since she was an "add-on".  I stayed the night with Holland (which resulted in about 2 hours of sleep - which for being 8 months pregnant is obviously not ideal, but somehow I've actually made it through the day without any problems - part of it may be adrenaline, but I'm attributing most of it to all of the prayers we've had on our behalf.  It has truly been amazing and humbling how many people have shown that they care and that they are praying for us! Many people have fasted on her behalf and we know of at least 7 temples where her name is on the prayer roll).  Bryan went home to pick up our stuff and slept the night at our house since he had a doctor's appointment for his broken/dislocated finger.  Considering the circumstances, we obviously didn't care about his finger, but since they would charge us for it if he missed the appointment and since we needed clothes and stuff anyway, he decided to make the drive down to Provo and back up to SLC today.

The nurses and staff have been wonderful here.  We did fine in the morning, but they put her on a fast starting at midnight.  Since you have to be fasting 8 hours before the surgery and we didn't know when her surgery would actually be, that was the rule that they made (her surgery could have been earlier today had one of the other appointments cancelled or been moved).  Well, we did fine up until about 11am.  She started asking for food and juice.  It's so hard to say "not right now" and then try to distract her from the fact that she hadn't eaten in forever.  Seriously.  I have a hard time fasting.  How are you supposed to make a 3 year-old fast for 15 hours?  Well, we held out for another couple hours, but at about 12:30 or 1pm, we decided to drug her up with morphine to help take away the hunger pangs and sleep (don't forget she got about 2 hours of sleep the night before and was getting to the inconsolable point again).  We were told that surgery would probably be at about 2:30pm....no such luck, but she did sleep for a couple of hours and she went in for surgery at around 4pm.

And so now we wait.  I'm sitting in the waiting room still trying to swallow the idea that "my child has a brain tumor".  They give updates about every 1 1/2 hours and surgery is expected to last about 4-5 hours.  We're hoping for the best, but we also know that she's not immediately going to bounce back to her usually spunky self.  This is major surgery.  We'll be here at Primary Children's at least for the next few days.  We've tried to look on the bright side - of all places to be, Primary Children's is one of the best hospitals in the nation and Dr. Brockmeyer is one of the best neurosurgeons in the country.  I also, thankfully, do not have a newborn baby (which with the miscarriage, my original due date was April 21st).  And Bryan just got done with work for the summer, so we haven't had to worry about any work obligations.  I will continually pray that she will make a full recovery.  Wish us luck!