We are home!

After a 10 hour sleep, doctors felt she was ready to go home.  Erica was unhooked from the EEG monitor and released from the hospital at 10 o'clock Friday! Aside from having a lot of glue stuck to her scalp and flakes of glue in her hair that looks like blue dandruff, she is feeling great!

Children's Hospital - Day 4

The night nurse woke us up before sunrise.  Having had only four hours of rest, we were up and again grumpy and whiny.  We attempted to keep each other awake with nudges back and forth.  After breakfast and freshening up, Erica wanted to soak her feet in warm water.  She soaked feet and started reading a good book.  Then she sat up and yelled, "Button! Button!".  I pressed the alert button and she had a pretty intense seizure.  While she was recovering, her neurologists arrived and said she could sleep as long as she needed.  They had gotten the information they needed from the four seizures they have observed and recorded.  Sleep deprivation was terminated, medications were started up again, and we were told we could be discharged tomorrow (Friday).  Quite literally, Erica was asleep within 30 seconds of the doctors leaving and slept for about 4 hours.  I even got a nap in!  Today has been a great day for resting. 

EEG Monitoring during normal brain activity

Ahh...sleep at last!

We've been watching the news regarding the heat wave in Northern Colorado. We are so glad that we haven't had to deal with the hot temperatures at school. Because of the unprecedented heat and inability to cool temperatures at night, school has been cancelled for tomorrow.  I think this is a first for our school district.  I'm starting to really like our new superintendent!  As a result, we arranged for Sam to have a sleepover with a friend (thanks Trish!) so that Carl can work tomorrow.  Sounds like he'll get to go fishing!  Looking forward to seeing him tomorrow.  We are missing him so much!

Children's Hospital - Day 3

We woke this morning at 6 am after only having 4 hours of sleep, per doctors orders of sleep deprivation.  Tiredness is most certainly a trigger for seizures.  Both of us were grumpy and utterly exhausted.  When the neurologist checked in with us in the morning, we were surprised to hear that Erica had a seizure in her sleep.  The information they have received and learned thus far:
 - 1st night's sleep showed irregular patterns in her left temporal lobe.
 - seizure from 2nd day appeared in left temporal lobe.
 - seizure during 2nd night sleep also occurred in left temporal lobe.
These consistencies are great and happening in the same region as the tumor.

Around lunchtime, a neuropsychologist arrived to start intake questions for Erica's nuero-psych test in a few weeks.  They wanted to get some general background information about Erica's academic and social proficiencies to start a baseline measure. 

Since we've not been able to sleep or nap, we've filled our time with cards, games, a small attempt at school work, and a lot of classic movie watching.  Erica watched for the first time Pretty in Pink, Girls Just Want to Have Fun, and Footloose.  She laughed more at the outfits and hairstyles than she did the actual comedy.  She wanted to know why the 80s were so weird!

Around dinner time, she had a chance to Face Time with some friends and family.  Soon after her conversations, Erica yelled to me that she was having an aura.  I pushed the event button and by the time I reached her, she was in a full blown seizure.  It was the most intense one we've seen since our stay at the hospital.  It was a good one to capture on video and EEG.  She took a short nap after the seizure, but had to be woken since she is still on sleep deprivation orders.  Since she napped for about an hour this evening, we will most likely be limited to less than 4 hours tonight.  Ughh...

After waking Erica from her post-seizure nap, she was a hot mess, literally and figuratively.  She was SO exhausted, aggravated, and uncomfortable.  There wasn't much I could do to make things better for her.  Then there was the most timely delivery...chocolate covered strawberries sent with love from Grandpa and Grandma Martino.  Thank you!

My First Two Days in the Hospital

Erica here! I'll pick up where my mom left off...

Getting IV started

Around 5pm, a doctor came in to tell us sbout our evening plan.  They were going to wean me off my medicine to help provoke seizuers to happen. They also had informed me that I will be needing an IV, just in case I have a terrible seizure and need some emergency medicine. The IV nurse came in and tried the back of my left hand... and my vein collapsed. So he tried my other hand and... that one collapsed too. Needless to say, I was really upset and very sore. So, the nurse said we'll take a break and get another nurse to try. While we were waiting for the other nurse, I had some visitors arrive. Mrs. Tracey, Sanne and MJ couldn't have come at a better time to cheer me up. We all got settled in and the other nurse arrived to start my IV. My friends stayed to support me and the nurse got it on the first try. 


We all decided to order breakfast for dinner! while we were waiting, we listened to music, played a game of Balogna, and laughed a whole lot! We had a nice meal, and I enjoyed their visit. They stayed until arround 7:30pm and left, because they had a long ride, and because it was a school night. :)  After they left, we went to bed right away and watched the lightning storm outside our big window. I had a good night sleep, however, mom did not because her couch-bed was uncomfortable.

Add caption

                                                     

                        Okay...I'm going to let my mom take over writing now!

Science HW & Pedicure

Erica and I spent the day playing cards and games, doing school work, replying to emails,  and even pedicures.  The doctor came to discuss the interesting and notable observations made while she sleeps. Her left side of brain has very different patterns compared to her right brain.  We also discussed the plan for the day to provoke seizures.  Continue to wean off meds and start sleep deprivation.  At about 2:30, Erica had a seizure.  She felt it coming on and pressed the alert button.  After looking at the record on the EEG, it was determined to be a small 50 second seizure.  One thing that I learned when viewing the brain activity was how to actually tell when the seizure ends and recovery begins.  When Erica passed out, it was clear in the brain activity that it was the end of the seizure. 

Getting fitted for a new cap!

 So we are 1 seizure down.  A few more to go.  Going to be a long night.  She is limited to no more than 4 hours of sleep in a 24 hour time period.  Shouldn't be a problem for me...the bed is incredibly uncomfortable.  Maybe I'll try the chair tonight.

Carl and Sam arrived at dinnertime.  We had a great visit. Sam loved all the buttons on the bed, eating dinner in bed, and the chocolate cake too!  As I type, the kids and Carl are watching Antique Roadshow.  The episode is from 1998 and they are replaying it with then and now assessments.  The math teacher in me keeps wanting to shout "What is the percent of increase or decrease in value over the past 15 years?"

Okay...signing off for now.  Good night!

The EEG/Video monitoring has begun!

Yesterday was a busy day of packing and preparing for our stay at Children's Hospital.  Mid afternoon, Erica had a seizure with a very long recovery.  It was as if she passed out after the seizure because I had a tough time getting her to wake and respond to me.  She ended up taking a 4 hour nap.  When she woke, she was feeling up for some friend time at the bowling alley.  Sam and Erica had a blast.  Friendship and family is the best medicine!

Erica and her girls!

Because she had such a long nap during the day, she had a tough time getting to sleep.  Plus she was also very anxious about today.  Erica only had about 4-5 hours of sleep.  In some ways, maybe it is a good thing.  Sleep deprivation is a trigger for seizures, which is exactly what we what for the next few days.

Erica and I checked in at Children's Hospital in Aurora at 10:30 this morning.  We have a beautiful room with a gorgeous view of the gardens. 

Moving in just about everything but the kitchen sink!

Room 616

Beautiful view from the room!

An EEG technician arrived to get her "hooked" up. She attached 27 nodes to Erica's scalp with glue and wrapped her head with gauze to keep the nodes in place.  It took about an hour, but she passed the time watching a movie.  During our stay, Erica will be hooked up to the EEG monitor and videotaped continuously.  She will need to stay in her bed or chair throughout the study.  After the nodes were in place and video recording had begun, she went through a few tests with strobe lights and induced hyperventilation to see if we could provoke a seizure.  Towards the end of her 3 minute hyperventilation test, she began to feel an aura, but it did not develop into a large seizure. 

Nodes are in place and head wrapping begins!

EEG Monitoring Begins

Induced Hyperventilation Test

At noon we ordered our meal and settled into our room.  Erica was so excited that they server buttered noodles and had lots of desserts to choose from.  She enjoyed her chocolate cake so much that it was everywhere in her bed. What a mess!  After lunch, we checked email and texts and were cheered up by so many kind messages and positive thoughts.  Her Algebra class sent her the most amazing video/audio message about what a strong, brave girl she is.  She also received special messages posted on the Children's Hospital website that were delivered to her room.  So grateful to have such wonderful people in our lives.

Message from her algebra class

Messages from loved ones!

Erica is looking forward to having a few friends visit tonight and, although she may not admit it now, excited to see Sam.  We'll post more updates as they come.  Think it's time for a nap...for both of us.  :-)

Preparing for our stay at the EEG Lab

Erica and Sue will be preparing for her seizure monitoring this weekend.  First on our list is getting Erica lots of friend time and getting Sue lots of Sam time.  :-)  We'll be packing and planning for a handful of days of being confined to her room and, for the most part, her bed. We'll also begin to step down on her medicine on Sunday in hopes that it will bring on seizures when we arrive at the hospital.  We will be checking into Children's Hospital in Aurora at 10:30 on Monday.  We'll make daily updates throughout our stay.  Hoping we get the needed information for the neurologists to plan surgical procedures.  Also hoping we won't need to stay the whole week!  Stay tuned.

First week of school

First week of school was overall good for us all.  Sam has enjoyed reuniting with his buddies and really enjoys his 3rd grade teacher, Mr. Warren.
    

       

Kings of the playground!

Sue began her 16th year of teaching math at Preston Middle School.  Where do the years go? She is working part-time this year and hopes that it will help to make for a better balance between work and family.  The students she has this year are amazing and have brought many needed smiles and laughs.

Carl continues to keep busy working crazy summer hours and making time for the kids in the evening.  With any time left over, he is either working on the house or on the ice.

Erica had a fairly good first week at school.  Tues was filled with exciting new beginnings.  She was pretty exhausted by the end of the day, as we all were.  Perhaps the exhaustion from a busy and super hot day was the cause for the seizure she had that evening.  On Wednesday, Erica experienced another seizure during the school day and was relieved that she was able to make it safely to the hallway with her teacher in a more private setting during the worst part of the seizure.  Thursday and Friday were very warm days at school, but she was seizure-free both days.  Overall, she would say her first week was mostly great.

Erica's first day of 7th grade

 

Let's celebrate!

Last night, Erica had her Tae Kwon Do belt promotion ceremony. It was so wonderful having so many friends in attendance supporting Erica and celebrating her perseverance and determination. We'll let the pictures speak for themselves. What a great way to end our summer vacation!

Upcoming Events & Appointments

Fri, Aug 16:  Erica ends summer vacation with her blue belt promotion in Tae Kwon Do
Tues, Aug 20:  Erica and Sam's first day of school
Mon, Aug 26 - Fri, Aug 30:  Extended EEG at Children's Hospital

Details about extended EEG:
Erica will be admitted to Children's Hospital in Denver on Aug 26.  Purpose is to record seizures on EEG and video to determine where seizures are occurring in her brain.  Since Erica continues to have seizures frequently, we hope that she will not need to stay the full 5 days.  She is allowed up to four people (visitors) in the room at one time.  One parent will be staying with her at all times.  Visiting hours are 9am-9pm.  For more info on the procedure: http://www.childrenscolorado.org/wellness/info/parents/25138.aspx. 

Highs and lows this week

Monday was a rough day.  During the day, Erica had several auras (small seizures) that were intense at times.  She rested for a bit, but was excited to go to her Tae Kwon Do class so she could test for her board break.  She had a great class, but in the last 10 minutes while she was preparing for her board break, she had seizure.  Needless to say, she was so upset that the seizure happened in front of her peers and parent audience.  She slept on the way home in the car and went straight to bed when we arrived home. 

Erica woke to a beautiful sunny morning, much like her outlook.  Even though she was coming off a very difficult day, she maintained a positive outlook and processed the previous day's events well.  She amazes us everyday with her courage and perseverance.  Although difficult at the time, Monday's seizure reminded us how lucky she is to have wonderful, supportive, understanding, and compassionate friends and instructors at the dojo (Trans Martial Arts).  She knew that she would be uncomfortable at first returning, but she knew that they would all understand. 

Tuesday was a better day for Erica with no big seizures, just auras.  She received her new 7th grade schedule and locker assignment in the afternoon.  She was ecstatic that her locker was not right next to her mom's classroom! Although she is excited for the new school year to begin, she has quite a bit of anxiety about starting the school year, especially after Monday's episode. 

Wednesday turned out to be a great day from start to finish.  Knowing that seizures are triggered by lack of sleep, we decided to modify Erica's school schedule so that she has a late start.  She will arrive at school with Sue at 9am until after she has recovered from surgery.  We also received a phone call from Children's Hospital to change her extended EEG to a closer date so that we can speed up the planning process for surgery.  They had an opening on August 26!! We are so excited to not have to wait until October. 

Erica also decided to return to Tae Kwon Do for a class with hopes to finally complete her board break test.  She was nervous to face her friends and instructors, but she held her head high and exhibited great bravery.  It was a wonderful class full of smiles, giggles, and yes...board breaking.  She kicked through the board with great determination and on her first try. 

So proud of my strong, optimistic, and determined girl!  She has taught me a thing or two about courage. 

August 8 - Extended EEG Scheduled

Received a call from Children's Hospital to schedule Erica's extended EEG testing. Her test has been scheduled for Oct 7-Oct 11.  Erica will be admitted for a 5 day stay to monitor her seizures and get them on record.  The stay may not need to be for all 5 days if she has seizures frequently and they can get good information from them.  The purpose of this test is to locate the origination of the seizures and determine what parts of the brain are being impacted by the seizure.  The type of seizures that Erica experiences are typical of seizures that occur in the temporal lobe, where the tumor is located.  Since the tumor is located close to the hippocampus, it will be important to see if the seizure also exists there.  During this stay, Erica will be restricted to her room due to the fact that she will be hooked up to dozens of wires as well as video recorded.  She will be able to have up to two people that can stay the night, but she will need one person with her at all times.  We will be sure to bring lots of fun things to do, including school work.  :-)

August 8 - Meeting with Neurosurgeon

Requesting a second opinion is standard practice with situations such as ours.  We visited with Dr. O'Niells yesterday.  Dr. O'Niells is a pediatric neurosurgeon who specializes with brain tumors and epilepsy.  It turns out that Dr. O'Niells is already familiar with Erica's case due to the fact that pediatric neurosurgeons specializing in brain tumors are few in numbers in this area and that Dr. Park has already gotten many second opinions from her colleagues.  :-)

This appointment turned out to be a very helpful Q&A time for Erica, Carl and Sue.  Up till this point, we had been very careful with the language that we used with Erica and chose to not include words that may create more anxiety than what she is already experiencing.  Dr. O'Niells approached the situation tremendously well.  In his conversation with Erica in getting to know her, not her file, he noticed that science is something she really enjoys.  He approached her condition in a cool "sciency" manner.  He pulled out two copies of her MRI and said, "Since you like science so much, I think you'll find these pictures really cool!" They went over the pictures of her brain and talked about where her eye sockets and nasel cavities were.  He also discussed the symmetries of the brain and drew emphasis to what was not symmetric.  She noticed right away the small white spot on the left side of the brain that did not also appear on the right side of her brain.  Through their discussion he described the spot as being the cause for her seizures.  She already had some background knowledge about a clump of cells and nerves that were irritating her brain, but Dr. O'Niells delicately described other names for it, including tumor.  He explained clearly that this is NOT the kind of tumor she may be familiar with and she does NOT have cancer.  You could see her relief.

The appointment answered many questions for us all and we did learn a great deal more about what we are dealing with and what to expect.  In summary:
- The tumor is about 1cm in diameter, fairly small.
- It is located on the left side in the temporal lobe close to the left hippacampus.
- It is possible that she was born with this abnormality and it just now has decided to cause symptoms.
- Because of the location and size of the tumor, she is a perfect surgical candidate.
- There are less invasive procedures that may be an option like laser surgery.
- If surgery is course of action, she will most likely be cured! No more epilepsy!
- Once surgery planning has begun, timeline would be 2-3 months for surgery to happen.

It was clear that this appointment helped us all accept and understand more in depth, but more than anything remove some of our worst fears.  In the end, Erica will be a happy and healthy girl, or at least as happy as a teenage girl can be. :-) 

August 6 - Update from Dr. Park

Received our weekly phone call from Dr. Park to check on Erica.  :-)

- Erica continues to have seizures and many auras, even with the increase of medication each week.

- Erica currently is taking two different anti-seizure medicines.  Keppra and Trilyptal.  Keppra did not stop the seizures form occurring, so we have been stepping up on the Trilyptal, but keeping the Keppra at same dosage.  Dr. Park thinks we have a little more room to increase the Trilyptal, which we will do over the next few weeks. She is not totally confident that this increase in Trilyptal will stop the seizures.

- Dr. Park has decided to start looking at other options and begin the planning for surgery to remove the tumor.  Planning for this type of surgery requires a lot of information gathering and will take many months.  In the meantime, we will try to control the seizures with medications.

- Steps for planning for surgery include 1) extended EEG seizure monitoring, 2) additional MRIs, 3) appointments with neuropsychologist, 4) appointments with the surgery team

- Dr. Park will put the order in for the extended EEG and we should get a call from the EEG lab to schedule in the next few days. 

What is a Ganglioglioma?

Taken directly from:  http://www.stjude.org/stjude/v/index.jsp?vgnextoid=7e0d061585f70110VgnVCM1000001e0215acRCRD

Brain Tumor: Ganglioglioma

Alternate Names: Gangliocytomas, ganglioneuromas

Definition

These rare, benign tumors arise from ganglia-type cells, which are groups of nerve cells. Gangliocytomas (also called ganglioneuromas) are tumors of mature ganglion cells. Gangliogliomas are tumors of both mature nerve and supportive cells. The most common sites are the temporal lobe of the cerebral hemispheres and the third ventricle, although they might also occur in the spine. Cyst formation and calcification (mineral deposits) may be present in some cases. Seizures are generally the most common symptom. These tumors are small, slow growing, and have distinct margins. Metastasis (spread to other parts of the central nervous system) and malignancy are very rare.

Incidence

Tumors arising from ganglia most frequently occur in children and young adults. They represent less than one percent of all primary brain tumors and about 4 percent of all pediatric brain tumors.

Survival Rates

Following a complete resection of the tumor, chances of long-term survival are near 100 percent. If the surgeon could not remove the entire tumor, sometimes radiation therapy is necessary. The prognosis still remains very high, 80-90 percent.

Treatment Strategies

Surgery is the standard treatment for both gangliocytoma and ganglioglioma. Radiation therapy may be required if there is remaining tumor after surgery.

 

July 2013

Throughout the month, the family continued to find fun summertime activities to do and carry on with the treatment plan for Erica's seizures to stop.  Fun activities included Tae Kwon Do (no sparring), bowling, sewing, legos, games, basketball, walks, movies, baseball and reading (which took a great amount of convincing).  Best parts of July involved time with friends and family.  Sue's mom, Sally (Mimi), and nephew, David, came to visit from CT for a handful of days mid July.  It was exactly what we all needed and sure was a highlight of our summer.  We kept busy during the week giving David a glimpse of what Colorado life was like.  Lots of laughter and smiles among us all.  We enjoyed a Rockies game, a trip up to Rocky Mountain Park, Fort Fun, Laser Tag, tour of Ponnequin Wind Farm, and much more.

    

 

Erica's anti-seizure medicine was increased each week and we noticed a decrease in seizure frequency and intensity.  However, Dr. Park was still not pleased that Erica was experiencing any seizures at all.  One July 11, Erica experienced the warning sign, or as she calls it, "bad feeling", while at Sam's baseball game.  These bad feelings have been described by her doctor as being a seizure aura.  These are in fact small seizures that occur, but Erica does not lose awareness/consciousness during them.  At times these auras do develop to worse seizures, other times they pass.  So, while at Sam's baseball game, she experienced aura after aura.  She was so uncomfortable with the lingering aura and nothing seem to make them pass.  Sue decided after 20 minutes of seeing Erica in such discomfort, whimpering at times, to go to the ER.  Knowing that auras have been classified as small seizures and sustained seizures could be harmful to Erica, it was important to stop them from happening immediately.  While in the ER, the seizures subsided and Erica was given an emergency anti-seizure medicine to prevent further seizures for some time. This would allow her brain to rest.  Indeed it did.  Erica was SO groggy and sleepy throughout the next day.  Lots of resting and napping followed. Following this scarey incident, Dr. Park wrote a prescription for Erica to have a rescue medicine with us at all times in the event that intense seizures last for more than 5 minutes or if she has clustering of seizure auras. 

On July 19th, Erica had her first MRI.  Dr. Park called that evening with the results.  The MRI in fact did find the cause for her epilepsy.  Erica has a low-grade tumor called a ganglioglioma which is located in the temporal lobe.  Dr. Park explained that this type of tumor is NOT a cancerous kind and Erica will not need radiation or chemo.  These types of tumors are very slow growing, if they grow at all.  The course of action was to treat the symptoms and get the seizures to stop. A follow-up MRI will occur in one month to observe if there is any change.

The ganglioglioma is located on the right above the eye socket.

 

As can be imagined, our world was turned upside down.  Lots of phone calls with family and friends helped to process this information.  We also spoke frequently with Dr. Park regarding questions and wonderings.  This news was delivered during our visit with Sally and David, which actually couldn't have been better.  Sue had her mother with her for support and the kids had their cousin to keep them smiling and laughing.

Erica's condition has been difficult for her to adjust to because it has really put a damper on the "fun factor" of her life.  The results of the MRI also added disappointment and changes to our summer plans. Typically every summer, Sue and kids travel to CT to visit with family and friends.  Our original plans were to travel after Sally and David's visit.  We were very excited for the trip, especially to meet and see cousins from Nicaragua that were visiting CT also.  We were sad to cancel our trip and we have missed our family dearly.  

July closed with continued improvement in Erica's seizure frequency and intensity.  She actually went 9 days without having a seizure where she loses consciousness.  She did continue to have auras, which Dr. Park wasn't totally satisfied with.  Still the question remained with all of us...why are we not removing the tumor?

What are Complex Partial Seizures?

Taken directly from:  http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/complexpartial/index.cfm

Complex Partial Seizures

Recognizing a Complex Partial Seizure

Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.  During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.  Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.  A complex partial seizure is often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.  A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.  This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.  Sometimes people wander around during complex partial seizures.  Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.  However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action—like dealing cards or stirring a cup of coffee—he or she may stare for a moment then continue with the action during the seizure, but in a mechanical, unorganized kind of way.

First Aid for Complex Partial Seizures

• Do not restrain the person.
• Remove dangerous objects from the person's path.
• Calmly direct the person to sit down and guide him or her from dangerous situations. Use force only in an emergency to protect the person from immediate harm, such as walking in front of an oncoming car.
• Observe, but do not approach, a person who appears angry or combative.
• Remain with the person until he or she is fully alert.

Public Understanding

Every day, people living with this type of epilepsy go to work, take care of their children, take part in sports, ride buses, cross busy streets, go on escalators, wait for trains and—perhaps most difficult of all—risk having a seizure in front of a public that too often does not understand.

Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. That's because many people find it hard to believe or accept that behavior which looks deliberate may not be.