Scary Stuff
Since surgery on September 15th, she's had two CT scans and one MRI to take a closer look at the bump on her incision site. Doctors have decided that it is a pseudomeningocele--a collection of brain fluid (also known as cerebro-spinal fluid, or CSF) under the skin. This comes from leakage from the the burr hole in the bone due to pressure from coughing or vomiting, both of which she has been doing since surgery.
I don't think I ever explained the specifics of her surgeries, so in the gory spirit of Halloween, let me elaborate a bit. Essentially, they open the skin, with a six inch incision from the nape of her neck to the middle of her head. Next, they drill a small burr hole in the skull, and cut a small square flap of bone which is then removed to access the brain. They put her all back together again and usually she heals very well, with no problems. This time, she caught a virus which caused her to cough and vomit, causing pressure in the head which pushed fluid out from the skull that has yet to fully heal.
Scans, Scans, and More Medical Jargon
Emma had nightly high fevers almost consistently for 4 weeks. The CT scans were done to make sure that the vomiting was not from increased pressure in the brain (hydrocephalus). At the time, she was fine. No brain swelling. She was also subjected to lots of tests--blood cultures and labs, urine cultures, etc. Still they could not determine what was causing the fevers. I was told it was a virus.
Early on Monday morning (10/26) I made a call to our oncologist to find out the results of some blood work that Em had done that Friday before. I told them she was still experiencing the high fevers over the weekend, and we were asked to come into the ER to get an MRI and do more lab work on Emma. We were admitted that night for what was to be a short stay. A little more than 48 hours later, we were sent home.
The MRI results were not nice. It showed that there indeed was excess fluid, known as hydrocephalus, in the brain, and that Emma's ventricles are enlarged because of it. Our neurosurgeon went into some detail regarding the scan. Aside from the enlarged ventricles and excess fluid, Emma's brain fluid is also somewhat thicker--what that means, I don't know, but it doesn't sit well with me. The hydrocephalus causes vomiting and sleepiness. The extra pressure in her head has also been causing her pseudomeningocele--the fluid-filled bump on her incision site--to swell. The bump is the size of a lime, and looks pretty scary.
Then there's the "new spot." A new spot we have to watch.
Yeah. When I saw it, I felt sick to my stomach. At this point, we are not sure what it is. It could be scar tissue, blood product or changes in the brain resulting from surgery, which was just 6 weeks ago (at the time). Good news is that it is not located on the brain stem, but on the cerebellum. Bad news: its very symmetrical and measures about 8mm in size. Ugh. Hopefully it is nothing. Our next brain and spine MRI is scheduled on November 15th, and if it has grown, then we have our answer.
Emma was treated with antibiotics, and given a medication that should help reduce the hydrocephalus. It's been a little over a week now, and while the size of the bump had reduced while she was in the hospital, it has since become larger. Though she is not vomiting or complaining of headaches much, and the fevers have subsided, I can see that she is still tired.
Our doctors are considering placing a ventricular shunt to help drain the fluid if the medication is not effective enough. A shunt sounds scary. It involves creating a burr hole in the skull into which a tube is inserted. That tube is then run under the skin, down the neck and into the stomach where it drains out. I'm sure its not as bad as it sounds, but it is permanent. And I'm sure it will hurt.
The Thursday Marathon
This Thursday, November 4th, will be a long one. Aside from an early meeting with our oncologist to discuss treatment options, getting blood labs drawn, and meeting with her ophthalmologist for an eye exam, there is also a Lumbar Puncture scheduled.
Also known as a spinal tap, fluid will be drawn out of Emma's spine to check for cancer cells in her CSF. The procedure is similar to an epidural, for those of you familiar with childbirth. FYI, the same fluid that flows through the brain also cycles through your spinal column. It is not uncommon for brain tumors to drop seedling tumor cells into the fluid, where they are free to float around and attach and grow to different parts of the brain or spine, spreading the cancer. Not fun.
I tell you honestly, we are pretty shaken by all of this. Mike and I are holding steadfast, trying to make it day after day. We try to give Emma every opportunity to be a happy, normal child. But I tell you, I am weary. I think the emotional stress has finally caught up with me after all these years. I feel like every time the tumor comes back, it knocks me down again and again, making me just a little bit weaker every time. Please pray for strength...for me and Mike and especially Emma. I hate that she has to endure this at all, but sadly, this is what she knows. It's her "normal."
Happy Stuff
On the plus side, Emma has been in pretty good spirits. She has gone back to school for half days lately, though her attendance is pretty terrible with all of her medical issues and weekly therapies. I think in the past two weeks, she's only been to school a total of 4 days. But she loves it and is glad to be there. I take her home early for therapies or to rest. She has very limited energy and can only endure so much schooling. What a way to start Kindergarten, huh?
She was really adamant about going to the Fall Festival at her school, so we did. She only lasted a few hours before becoming too exhausted, poor thing. It was a lovely day, all the kids in costume and great weather. Although there was no participation in bouncy houses or anything too physical, there was an overwhelming eagerness to throw balls and dunk Mr. Diaz, the Vice-Principal, in the dunk tank. Go figure. She missed of course; throws like a girl. I think she loved the hay stacks the best. (I have photos which I promise to fill in here, later.)
I guess I should tell you what they were dressed as for Halloween...Mermaids. Emma was a mermaid, of course. As was Hannah. And the baby? I couldn't resist dressing him in something that will forever embarrass him...a crab. I figure this is likely the only year where I can choose his costume for him. So I went with a theme.
Behold, the two mermaids and the crab...and the "cheesy" smiles.
How to torture your baby...put him in this costume and take his picture.
Halloweening with our Superhero friends.
And a little piece of sushi, too. :)
Halloween night was so tiring, but was spent with wonderful friends. Emma was very happy. She started off with some energy, but couldn't endure trick or treating like other kids could. Halfway down the block, she had to sit in the baby's wagon and get pulled around. That's okay; it was the best way to eat candy while on the road. She was quite content to just let Hannah bring her all of the treats.
In Conclusion
Thanks for your understanding as to why I don't update this blog often anymore. Lately, I have been too overwhelmed and exhausted with everything to be able to sit down and write (which is why this post is pretty uninspiring.) The truth is, most of the time I can't make it through the tears to finish a blog post. Nothing is easy. Everything is stressful. We take it day by day.
In Conclusion
Thanks for your understanding as to why I don't update this blog often anymore. Lately, I have been too overwhelmed and exhausted with everything to be able to sit down and write (which is why this post is pretty uninspiring.) The truth is, most of the time I can't make it through the tears to finish a blog post. Nothing is easy. Everything is stressful. We take it day by day.
Please continue to send prayers for Emma. We are so grateful at the love and support we receive from everyone. Thanks so much. Please pray that her spinal tap goes well and the results are good! I really do feel like she is getting better daily. Even though its taken a longer time to heal, she will indeed heal.
I haven't said this in a while either, so I'll remind you kindly...take some time tomorrow to cherish your children and the ones you love. Just stop. Take one moment out of your busy day to see them with your heart, listen and love them. Don't forget that feeling...ever.
