We are hopeful that Erica will be seizure and tumor-free before the end of the month!
Upcoming appointments:
- Tues, Oct 1: Pre-Wada Test Appointment
- Thur, Oct 3: Wada Test (See previous post for more information.)
- Wed, Oct 23: Visualase Surgery to remove tumor!!
We are expecting that there will be many appointments prior to the surgery on the 23rd, but we are happy to hear that surgery has been scheduled!
It has been a challenging week overall. With Erica struggling with a sprained ankle, she also experienced many seizures throughout the week. She has reached the maximum dosage for her new medicine (Zonegran) last Friday, and almost like clockwork, her seizures increased in frequency towards the end of the week as if her brain was saying, "You can't trick me for too long!" She experienced several seizures at school, leaving us all (Erica, parents, and teachers) anxiously awaiting an end to this all. A little more than three weeks to go!
Again, I can't be more thankful for good friends, family, and amazing strength from Erica and our family. Many have asked how we are really holding up. Honestly, the reality is we somehow manage to muster up the strength to get through some of the most challenging times. For us, it has been hope, friends, passions, and distractions. In the end, it all will make us stronger, more compassionate, and more appreciative. I can't go without saying and thinking about others that are less fortunate than Erica. She has a brain tumor and condition that is curable. My heart aches deeply for those who still struggle for a cure.
Friday, September 27, 2013
Seriously??
So Erica was playing at the skate park before Sam's baseball practice and decided to "leap" into the skate pool (no she was not skateboarding). Her intent was to slide down the side of the pool on her butt, but her ankle caught her fall. She screamed from the bottom of the pool as if her foot had been cut off. Rather than an, "Oh no! Are you okay?"...my response to her was, "Seriously?!?" After another visit to urgent care, x-rays revealed that she badly sprained her ankle. Luckily no break. After 8 days of crutches, air cast, ibuprofen, ice and much complaining, she is beginning to bear putting a bit of weight on her foot. Hoping that Monday she will be crutch free. Fingers crossed.
Several "not so" amusing stories related to this most recent injury:
- As Erica was moaning and gritting through the pain 20 minutes after her injury, she muttered, "Mr. Walz was right." I asked about what? She said she was playing with her friends crutches earlier in the day and Mr. Walz cautioned her to not play with them because it was bad luck. Probably the last time she'll ever play around with crutches ever again.
- Three of Erica's friends, including two of her closest friends, are all using crutches this week from varied injuries. It's as if they've started a Crutch Club.
 |
| Yup! That's the spot she jumped! |
| Can I take it back? |
Several "not so" amusing stories related to this most recent injury:
- As Erica was moaning and gritting through the pain 20 minutes after her injury, she muttered, "Mr. Walz was right." I asked about what? She said she was playing with her friends crutches earlier in the day and Mr. Walz cautioned her to not play with them because it was bad luck. Probably the last time she'll ever play around with crutches ever again.
- Three of Erica's friends, including two of her closest friends, are all using crutches this week from varied injuries. It's as if they've started a Crutch Club.
 |
| The Crutch Club |
Monday, September 16, 2013
Next Steps!
Today, we met with Erica's amazing team of doctors.
* Dr. Park - Neurologist
* Dr. Oniell - Neurosurgeon
* Dr. Wilkening - Neuropsychologist
* The rehabilitation team
* Wynn Bird - Epilepsy Program Cooridinator
We visited with each one of them in length, and after a 3 hour appointment, we walked away more educated about the brain than we ever expected! Here is a summary of our visit.
The data collected from the extended EEG and the neuropsychology evaluation indicates that the seizures most certainly are a symptom of the tumor. Since seizures cannot be controlled with medication, surgery is the next step. There are two procedures that are options for Erica due to the nature of the tumor and the location.
Option 1: Standard Temporal Lobectomy
This procedure involves removing the tumor, tissue around the tumor and the hippocampus.
Cons - This is a more invasive surgery and requires more recovery time. Memory decrement is a concern as well as small visual deficits.
Pros - This procedure has been performed for many decades and is well documented and proven effective in curing epilepsy due to a brain tumor.
Option 2: Visualase Procedure
This procedure involves a new laser technology that targets only the tumor.
Cons - Only 300 of these procedures have been completed in the nation. With this being a newer technology, there is less data to support the effectiveness of the procedure.
Pros - All the data thus far suggests that this procedure is highly effective. This procedure has been conducted at Children's Hospital 6 times. In all 6 cases, all patients are seizure free after surgery. Another pro for this procedure is that it is the least invasive and recovery is only a few days. Memory decrement is less likely with this procedure.
Both options were described in much, much
more length, but in the end, the team of doctors recommend the 2nd option. If this option is not effective, we can still fall back to option 1. To prepare for surgery, Erica will have several more tests.
Wada Test: https://www.epilepsy.com/epilepsy/surgery_wada
This test will allow the neurologists to look more closely at Erica's language and memory centers. The temporal lobe controls both of these functions and the tumor is very close to one of her memory centers, the left hippocampus. The test will determine if the left hippocampus has been negatively impacted by the seizures and to determine if the right hippocampus can compensate for the left if it has been damaged and/or needs to be removed. This test requires Erica to be admitted for the day at the hospital. She is really nervous about this procedure, but all the doctors assured her that it is mostly uncomfortable and not painful. For more information about the procedure, view the link above. Basically, she is having an angiogram. The "anesthesia" will put each half of her brain to sleep and test the other half for memory and language. They told her to expect times where she may say really strange or funny things, and other times when she can't talk or move a side of her body. Sue will be able to be with Erica most of the day, just not during the actual test. She'll be away from mom for 1-2 hours.
Visual Field Test: To be scheduled with our local eye doctor to get a baseline for her vision capabilities.
MRI Test: Just before surgery, an MRI test will be taken again to map the brain and make measurements.
Surgery: http://www.visualaseinc.com/
Erica will be asleep during the entire procedure. The Visualase Procedure will take about 6 hours to complete. The link above shows a neat video animation of the surgery and lots of information about the technology. They will complete a biopsy of the tumor first. Then they will insert a catheter to the tumor and use the Visualase technology to "burn" the tumor with use of an MRI for precision. Erica will only need about a 1 cm incision! More than likely, she will not need to be moved to ICU after surgery. They expect her to return to recovery unit and more than likely can leave for home the next day!! She can expect very little pain. No headaches and no pain other than the 1cm incision! They said she can return to school and activity when she feels ready to.
Timeline:
Visual Field Test - End of September
Wada Test - Beginning of October
MRI Test - Week of surgery
Surgery - 1 week after Wada Test - Mid October
We are hopeful for a healthy girl by Halloween! I think Erica should be a brain surgeon for Halloween. Who knows, maybe she'll aspire to be one when she grows up!
* Dr. Park - Neurologist
* Dr. Oniell - Neurosurgeon
* Dr. Wilkening - Neuropsychologist
* The rehabilitation team
* Wynn Bird - Epilepsy Program Cooridinator
We visited with each one of them in length, and after a 3 hour appointment, we walked away more educated about the brain than we ever expected! Here is a summary of our visit.
The data collected from the extended EEG and the neuropsychology evaluation indicates that the seizures most certainly are a symptom of the tumor. Since seizures cannot be controlled with medication, surgery is the next step. There are two procedures that are options for Erica due to the nature of the tumor and the location.
Option 1: Standard Temporal Lobectomy
This procedure involves removing the tumor, tissue around the tumor and the hippocampus.
Cons - This is a more invasive surgery and requires more recovery time. Memory decrement is a concern as well as small visual deficits.
Pros - This procedure has been performed for many decades and is well documented and proven effective in curing epilepsy due to a brain tumor.
Option 2: Visualase Procedure
This procedure involves a new laser technology that targets only the tumor.
Cons - Only 300 of these procedures have been completed in the nation. With this being a newer technology, there is less data to support the effectiveness of the procedure.
Pros - All the data thus far suggests that this procedure is highly effective. This procedure has been conducted at Children's Hospital 6 times. In all 6 cases, all patients are seizure free after surgery. Another pro for this procedure is that it is the least invasive and recovery is only a few days. Memory decrement is less likely with this procedure.
Both options were described in much, much
more length, but in the end, the team of doctors recommend the 2nd option. If this option is not effective, we can still fall back to option 1. To prepare for surgery, Erica will have several more tests.
Wada Test: https://www.epilepsy.com/epilepsy/surgery_wada
This test will allow the neurologists to look more closely at Erica's language and memory centers. The temporal lobe controls both of these functions and the tumor is very close to one of her memory centers, the left hippocampus. The test will determine if the left hippocampus has been negatively impacted by the seizures and to determine if the right hippocampus can compensate for the left if it has been damaged and/or needs to be removed. This test requires Erica to be admitted for the day at the hospital. She is really nervous about this procedure, but all the doctors assured her that it is mostly uncomfortable and not painful. For more information about the procedure, view the link above. Basically, she is having an angiogram. The "anesthesia" will put each half of her brain to sleep and test the other half for memory and language. They told her to expect times where she may say really strange or funny things, and other times when she can't talk or move a side of her body. Sue will be able to be with Erica most of the day, just not during the actual test. She'll be away from mom for 1-2 hours.
Visual Field Test: To be scheduled with our local eye doctor to get a baseline for her vision capabilities.
MRI Test: Just before surgery, an MRI test will be taken again to map the brain and make measurements.
Surgery: http://www.visualaseinc.com/
Erica will be asleep during the entire procedure. The Visualase Procedure will take about 6 hours to complete. The link above shows a neat video animation of the surgery and lots of information about the technology. They will complete a biopsy of the tumor first. Then they will insert a catheter to the tumor and use the Visualase technology to "burn" the tumor with use of an MRI for precision. Erica will only need about a 1 cm incision! More than likely, she will not need to be moved to ICU after surgery. They expect her to return to recovery unit and more than likely can leave for home the next day!! She can expect very little pain. No headaches and no pain other than the 1cm incision! They said she can return to school and activity when she feels ready to.
Timeline:
Visual Field Test - End of September
Wada Test - Beginning of October
MRI Test - Week of surgery
Surgery - 1 week after Wada Test - Mid October
We are hopeful for a healthy girl by Halloween! I think Erica should be a brain surgeon for Halloween. Who knows, maybe she'll aspire to be one when she grows up!
Friday, September 13, 2013
Update 9/13
We started this week off with a visit to urgent care on Monday evening. Erica hurt her thumb at Tae Kwon Do. After x-rays, no fractures were found, just a bad sprain. She struggled through the week with her sore thumb, but is able to move it fairly well this morning.
On Tuesday, we started Sam back onto his gluten-free and dairy-free diet. After a doctor's visit, we decided to give it a try another time. His overall emotional well-being appeared to be better when he was on his restricted diet. We'll see how it goes!
Since Erica's hospital stay for the EEG, her medication has been modified slightly. She has added a third anti-seizure medicine, and reduced the second medication by 1/5 (not much really at all). We have not seen any improvement in her seizure frequency; in fact she has had more seizures...a seizure just about every day and many auras throughout. Tuesday was a difficult day for Erica, starting out with a seizure in her first class period. She napped for a few hours in the nurses office, had lunch with Mrs. M in the office, and returned for her last class of the day. She also had many strong auras throughout the week which prompted a visit to the nurses office. We are so thankful for Erica's friends, teachers, and office friends. She is so well taken care of!
We received a call from the pre-surgery coordinator at Children's Hospital on Thursday. Erica's case was discussed at the neuro team meeting on Tuesday and next steps have been put in motion. We should expect a call from the MRI scheduling to schedule a functional MRI. Additionally, an appointment has been scheduled for Mon, Sept 16 at 2:30 for us to meet with Dr. Park (Erica's neurologist and epilepsy specialist) and the neuro surgery team.
As mentioned in the national news, Northern Colorado has been hit with some very rainy conditions, thus causing much flooding. Hardest hit areas as of this morning are Boulder and Lyons. Fort Collins seems to be doing okay at this time, but schools have been closed today (Friday) as a precaution due to flooded roadways. The kids and I were delighted to be able to sleep in a bit. Sam is right now enjoying the rain outside digging for worms.
Since Sam's baseball game has been cancelled this weekend, we have very little on the agenda. Looking forward to a lazy weekend before the busy week ahead. Love to all!
 |
| Thumbs up??? |
On Tuesday, we started Sam back onto his gluten-free and dairy-free diet. After a doctor's visit, we decided to give it a try another time. His overall emotional well-being appeared to be better when he was on his restricted diet. We'll see how it goes!
Since Erica's hospital stay for the EEG, her medication has been modified slightly. She has added a third anti-seizure medicine, and reduced the second medication by 1/5 (not much really at all). We have not seen any improvement in her seizure frequency; in fact she has had more seizures...a seizure just about every day and many auras throughout. Tuesday was a difficult day for Erica, starting out with a seizure in her first class period. She napped for a few hours in the nurses office, had lunch with Mrs. M in the office, and returned for her last class of the day. She also had many strong auras throughout the week which prompted a visit to the nurses office. We are so thankful for Erica's friends, teachers, and office friends. She is so well taken care of!
We received a call from the pre-surgery coordinator at Children's Hospital on Thursday. Erica's case was discussed at the neuro team meeting on Tuesday and next steps have been put in motion. We should expect a call from the MRI scheduling to schedule a functional MRI. Additionally, an appointment has been scheduled for Mon, Sept 16 at 2:30 for us to meet with Dr. Park (Erica's neurologist and epilepsy specialist) and the neuro surgery team.
As mentioned in the national news, Northern Colorado has been hit with some very rainy conditions, thus causing much flooding. Hardest hit areas as of this morning are Boulder and Lyons. Fort Collins seems to be doing okay at this time, but schools have been closed today (Friday) as a precaution due to flooded roadways. The kids and I were delighted to be able to sleep in a bit. Sam is right now enjoying the rain outside digging for worms.
Since Sam's baseball game has been cancelled this weekend, we have very little on the agenda. Looking forward to a lazy weekend before the busy week ahead. Love to all!
Thursday, September 5, 2013
Neuropsychology Testing Completed!
It was another long day at Children's Hospital, but Erica's testing went well. She said it felt like school, except that she was taking a test all day. Next step is for Erica's team (Neurologist, Neurosurgeon, Neuropsychologist, etc...) will meet to analyze the data collected last week. Within a few weeks, we should have recommendations for next steps.
For now, Erica and I are so happy to be back to school!
Sunday, September 1, 2013
Neuropsychology Test on Tuesday
Now that EEG monitoring has been completed, our next step is neuropsychology testing. We will travel down to Children's on Tuesday for a full day of testing to get a baseline of Erica's memory and cognitive abilities. Although we will be missing another day of school, we are thankful that things are moving so quickly.
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