One year later

It's been a year.
A whole year!
As a kid, a year was an eternity. Now as an adult, a year feels like a week and a day goes by with a blink. I still feel, with my whole body, the anxiety that I felt on October 30, 2013. This time last year, we were each sleeping in our own separate twin beds at David's House waiting for the alarm to ring to start the day of Cameron's brain surgery.

He had his mohawk. He had his Red Sox blanket and his comfy monster jammies. We had been overwhelmingly supported by our friends and family leading up to, and preparing us for the coming weeks. We had no idea what to expect that night, and that was terrifying.
It's pretty crazy how it all unfolded, honestly. Cameron loves looking at the scrapbook that I made, but he doesn't remember anything about those days at CHaD, in the PICU or how incredible it felt when he got to come home...to play basketball outside...two days after having brain surgery!

While we cannot totally celebrate Cameron being seizure-free one year later, we CAN celebrate that he is complex-partial seizure-free! Cameron had always had two types of seizures, complex-partial seizures and focal-motor seizures. Since his surgery, he has not had even ONE complex-partial seizure. This is the type that he would have frequently. It would slow him down for 30 seconds to 1 minute, he'd barely breath and got super hot and sweaty. The focal-motor seizures are more like what the average person thinks of when you hear someone had a seizure. It's not a grand mal seizure, but he loses consciousness and the right side of his body twitches. In our experience, these seizures only stop with the use of his emergency medication. We knew going into the surgery that there was a 50/50 chance it would "cure" his epilepsy, so the fact that it has cured one of the types of seizures, is fantastic!

In the last year, Cameron has had 6 focal-motor seizures. That sounds like so few, for a kid who could have 6 seizures in a day before his surgery, but it is more focal-motor seizures than he has had in his life before one year ago. These seizures are more dangerous and have no warning, unlike the complex-partial siezures, where he'd started to be able to tell us he didn't feel good before it happened. Two of them have happened at school, most recently this past Monday, Oct 27th. Cam was playing outside and fell over in the sandbox. Luckily, Shawn's mom, Cameron's Grandma, was already at school to pick him up and witnessed him fall over. She yelled to the teachers who called the nurse and they administered his emergency med on the playground.
I had Shawn take a picture of him sleeping on the couch Monday evening. I felt like the image of him sleeping on the couch with his Superman cape on, was so powerful after spending the previous day at CHaD celebrating the CHaD HERO event. My little Superhero...

Cameron had an appointment with Dr. Morse, his Pediatric Neurologist, in early September. Ironically, Cam had a seizure that morning - the first of the two that have happened at school. Dr. Morse decided to increase one of his two meds and wait for a "trend" before we do anything else. This time around, after Monday's occurrence, Dr. Morse decided he wants to have Cam's med levels checked, so we will be making a trip to the lab this week to have his blood drawn.

So, one year later, here we are.  I took this picture while he was laying across my lap last night. You can see that the scar has healed really nicely, for the most part. He is very aware of the area by his ear, as I think it's still pretty sensitive.

I still can't believe its been a year. 

I really wanted to thank everyone who donated to support CHaD, leading up to the CHaD HERO race this past Sunday! I ended up raising $675, which was just a tiny piece of the almost $704,000 and counting, that CHaD is still collecting as part of the CHaD HERO. I got to run through the finish with Cameron, which was so special. When we got through the finisher's chute, he looked up at me and said "Did I help you run the fastest you could be??" He was so proud of himself, and I was so happy to hold his hand as we crossed the finish line together. 

So, don't worry, 'bout a thing. Cause every little thing, is gonna be alright.

As Summer comes to an end...

I’ve wanted to write a post as an update for a while, but hadn’t figured out what exactly to say because I know there is some sense of disappointment that is hard to hide, while still expressing our gratefulness.

Cameron really cannot be considered “seizure-free” at this point. Since my last post in the beginning of April, Cam had two more focal-motor seizures, which are the bad ones, but the only kind he has continued to have. We’re just over the 10 month mark post-surgery and he has now had 4 bad seizures. That’s not bad considering where we were a year ago, but still a huge cause of anxiety for us.

On May 3^rd Cameron was sick, but on May 21^st, he was not sick at all – not even a stuffy nose, but he had a seizure. After that, we talked to his doctor who decided the best thing to do would be to start him on another supplemental medication, rather than continue to increase the dose of his current med, which was not controlling the seizures on its own. Since starting the new med (knock on wood) he has not had another seizure. 

Meanwhile, we took a big step at the beginning of the summer and decided to have Cam's hair CUT, like REALLY cut. We had been letting it grow out with occasional trims to cover up his scar while it healed, but his mop was just TOO much to control and so ridiculous! ;) He basically gained about 4 years after that haircut!

 Cam got to go to the ocean and camping for the first time this summer, and loved both!

With the new medicine he's on, they had warned us that his body won't sweat as much, so he could become very easily overheated. We've had to be extra cautious about his fluid intake this summer and how long he's been running around outside. His face gets beat red and so, so hot and its hard to cool him off. Several times at the beginning of summer we had to strip him down and put cold clothes on his neck (which every 3 year old LOVES...not!) to chill his body down. Luckily, it never caused a seizure, which is a problem he used to have with the heat. It was always a trigger for him.

As Summer ends and Fall begins, we start a new school year for Mr. Cameron! He's going into his second year of Preschool! Kindergarten next year! Can you believe it!?! I saw this article from The Huffington Post today and wanted to share it - if you have time to read, check out this honest account from a mother of an 11 year old girl with epilepsy, and the struggles that not only her daughter has, but that her and her husband, and also teachers and friends that care for her daily have. An interesting and insightful look.

Here is Cam on his first day this year - as you can see, his scar is still visible, and likely will stay much like it is now. He is aware of it, and we don't hide it. He occasionally asks about it and we're honest and talk about his surgery when he asks. I don't think he remembers anything about the actual surgery. 

As the time gets closer, I wanted to share again that I will be running in the CHaD HERO Half Marathon on October 26th, to ring in the one year mark from Cameron's surgery! 

100% of the funds raised will support the care children receive at any of the CHaD locations across the region. Did you know that each year over 60,000 children and adolescents are cared for by CHaD?

"Childrens Hospital at Dartmouth (CHaD) is one of only 205 nationally recognized children's hospitals and New Hampshire's only comprehensive, full-service children's hospital providing an extended system of care and advanced pediatric services." 

"In the two decades since CHaD’s inpatient unit first opened in Lebanon, NH, health care has evolved dramatically, as have best practices for caring for children. Yet, the unit’s physical layout and design have remained largely the same. Caregivers working on CHaD’s inpatient unit—and most importantly patients and families staying on the unit—deserve a physical environment that supports the very best care."

This year the CHaD HERO will contribute half of the total funds raised to the CHaD Inpatient Project. I'm so excited to be able to give back and support the staff that has given so much to our family over the past three and a half years! 

Please consider donating on Cameron's behalf to CHaD to provide monetary assistance to an organization that continues to provide the highest quality of care to the children in the state.
http://chad.donordrive.com/participant/cyriouslycam

Six months Post-op

As the Red Sox are getting back into the swing of the season and the rain is coming down, it's hard to believe that it's been six months since they won the World Series and Cameron had his surgery. Six whole months!

On the evening of April 3rd, Cam had another bad seizure. He wasn't sick, wasn't doing anything out of the ordinary, it just happened like it used to. We had to give him the diazepam to make it stop and called DHMC, since the last time he had one they wanted us to take him to the ER. This time, because he wasn't sick, the on-call doc said to give a call in the morning and talk with Dr. Morse to check in. We did that and he said not to get too worried yet. It's not common, but also not uncommon for kids to have epileptic seizures after surgery, as his brain is still figuring out the new routes to take and is still growing.

Shawn and I both agree that if this is the improvement we're going to have for Cameron right now, then it's much better than the alternative of his surgery not having helped at all. In the past six months he likely could have had 30 to 50 seizures by now, so we'll settle with two. He's doing great day-to-day and while we still have the anxieties associated with his seizures, its not plaguing our thoughts daily.  What IS plaguing our thoughts? "Frozen". Seriously. How do you get those songs out of your head!?!

In other news... ;)

After all of the support we received while going through Cameron's testing and surgery, we really would like to give back. CHaD holds the CHaD HERO racing series in October every year. Last year they were doing fun things in preparation for the event and we happened to be there for one of Cam's tests! Flashback to when Captain America was washing the windows:

This year the CHaD HERO weekend will mark the one year anniversary of Cameron's surgery (just about). What a better way to celebrate the occasion and the work that those doctors have done for Cam than to be there doing something fun OUTSIDE of the hospital!? 

I'd love to provide support to the kids fighting day in and day out behind those doors, and to the parents who feel helpless, and the siblings who just want to play with their brothers and sisters. CHaD does so much more than give medication and operate - the support they provide to the patients and families is unlike any other place I've been. As a non-profit organization, the care and services provided by CHaD is funded by donor dollars. I have registered for the half marathon: Check out my fundraising page! There is still so much time between now and then - six months to be precise! Thank you all for considering donating to support CHaD and for continuing to follow our journey to get Cameron seizure-free!

Purple Day!

Today, March 26th is Purple Day!
What is Purple Day, you ask?
"Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents including Antarctica participated in Purple Day!"
Check out how Purple Day began here: purpleday.org

We always chuckle when October comes around and it's Breast Cancer Awareness Month - because really, who isn't "aware" of breast cancer? I'm sure the same can be said for most diseases, as well as epilepsy, but I think the "awareness" in Epilepsy Awareness is a little different. It's a silent disorder. Most of you who have met Cameron never saw him have a seizure and would never know he has epilepsy. The hardest part about living with someone who has epilepsy, or having epilepsy yourself is the unknown. Its relatively unpredictable for most people. So, what can you do??? Educate yourself!

So, what is Epilepsy?
Epilepsy is the fourth most common neurological disorder and affects people of all ages
Epilepsy is characterized by unpredictable seizures and can cause other health problems
Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
The seizures occur because of a sudden surge of electrical activity in the brain. This causes a temporary disturbance in the messaging systems between brain cells. During a seizure the patient's brain becomes "halted" or "mixed up".

Facts about epilepsy:
1. About 326,000 American children under the age of 15 have epilepsy and 200,000 new cases of epilepsy are diagnosed each year. Epilepsy affects people at different ages and in different ways. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years, but for others, it may be a lifelong challenge affecting many areas of life.

2. Even with today's medication, epilepsy CANNOT always be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure. 


3. Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.

4. What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

If someone is having a seizure:

Loosen clothing around the person's neck.
Do not try to hold the person down or restrain them. This can result in injury.
Do not insert any objects in the person's mouth. This can also cause injury.
Reassure concerned bystanders who may be upset and ask them to give the person room.
Remove sharp objects (glasses, furniture, and other objects) from around the person to prevent injury.
After the seizure, it is helpful to lay the person on their side to maintain an open airway and prevent the person from inhaling any secretions.
After a seizure, the person may be confused and should not be left alone.
In many cases, especially if the person is known to have epilepsy, it is not necessary to call 911.
Call 911 if the seizure lasts longer than 5 minutes, or if another seizure begins soon after the first, or if the person cannot be awakened after the movements have stopped.

Cameron was sick with a fever and vomiting early this week and for the first time in his life, did not have a seizure when he was feeling under the weather! We feared it, because the last time he had a fever we ended up in the ER. What a relief! We're truly thankful for the work and help that the doctors at CHaD have provided us. You can check out how they help kids with epilepsy here: CHaD Kids

Sources:
Medical News Today
Epilepsy.com
Seizure First Aid

A look inside

There is an awful lot that goes on inside the brain of a three year old. There is singing, there is counting and spelling, there is pretending and imagining -- hundreds of thoughts streaming through those little cells all to create the non-stop, constantly-on-the-go, inquisitive preschooler that we see day to day.

Yesterday we got to see inside Cameron's brain, that is, by way of MRI. We arrived at CHaD's Pain Free area at 9:45am for Cam's 10:30am MRI, only to find out that they were running about 45 minutes behind. We got our hungry bellies comfy in the family waiting room and Cam decided it would be fun to take on a 550 piece puzzle, which really meant Mom and Dad do the puzzle while Cam throws the pieces around and loses interest in the first 10 minutes.

Success only long enough to build two houses, which I'd say is a good accomplishment for 40 minutes of puzzle-ing.

So we entered into Pain Free where the resident anesthesiologist checked Cam out - who has a cold, of course. We knew going there that there was a chance they couldn't do the anesthesia because of his cough & cold, but they said there is no way to know until we get there. The resident decided it would be best to have the doctor check him out, so we waited a little longer until Dr. Hillard came in. I was playing on the floor with Cam and Shawn was in the bathroom. He walked in and says "Hey guys! Nice to see you!" I looked up and must have seemed curious about him because he immediately asked if I remembered him...which I didn't. He then reminded me that he was the doctor who monitored Cam during his surgery! I apologized for not remembering him, as it was obviously a crazy day and we met a lot of people, but Dr. Hillard wanted to know how Cameron was doing. I told him that he's only had one seizure since the surgery, but that it was when he had a high fever, so Dr. Morse is confident that it was related to that. Dr. Hillard was thrilled and said that it was so good to hear the surgery may be a success and he felt really proud to be a part of a potentially life-changing event for Cam. Such sweet words to hear. :)

In the moment, it was equally good to hear that he felt Cameron's airways were clear, his lungs sounded good and he felt he was good to go for the MRI. Phew! We really were hoping to avoid driving up another day for it again. Cam is kind of a pro at this point and went right into the room, hopped up on the bed and laid down. He decorated his watermelon-scented mask with dinosaur stickers and fell asleep. A little over an hour later we met him back in Pain Free and shortly after were sent downstairs to see Dr. Bauer.

This is Cameron's right brain:

The area Dr. Bauer is pointing to is the hippocampus - the worm-looking thing. It's defined and formed well, just as it should be. Everything looks and has looked good on the right side of his brain.

This is Cameron's left brain, post-surgery:

Its pretty obvious to see that the whole central section is missing, which is good. Previously that "worm" on the left side was all globular and misshapen, round and unclear - not very worm-like, as it should have been. The main point of this MRI was for Dr. Bauer to be able to make sure he retracted everything he intended to during the surgery, because unlike an orthopaedic surgeon, they don't have clearly defined areas like an arm or a leg that they are working on. After reviewing the MRI he was confident that he had removed everything he wanted to and he was pleased that Cam has nearly been seizure-free since. He mentioned that his scaring, specifically down by his ear where it's still dark and raised, will get better, but it won't disappear. The hypersensitivity that he's having on his scalp should decrease over the next 9 months. All in all, we were happy to hear that we will likely not have to see Dr. Bauer again, barring any unforeseen complications (knock on wood) in the future.

I saw this and felt like today, of all days, it really rang true. So often we'd heard "I don't know how you guys do it." or "This must be so hard." It was, and it still is, but Cameron is such a smart, energetic, enthusiastic, loving and incredible little boy that we know we'll look back on everything he's been through and everything we've gone through and see that it has made us stronger as a family and really shaped the way we deal with struggles and obstacles. Spending time at CHaD puts things into perspective when you see families with children who are dealing with such bigger issues than we have.

Three Months

Yesterday, January 30, 2014 marked the three-month point from Cameron's brain surgery. Three months means his brain has likely healed from the operation and his skull has also healed up. Running your fingers along the side of his head, you can clearly feel the bumpiness of the disintegrating plate that was used to help fuse the bones back together. If I remember right, it takes 3-6 months to fully dissolve and while doing so, it forms bubbles as it absorbs fluid and breaks up. The incision remains pretty red in most spots, but is slowly being covered up by his rapidly growing locks!

This was taken November 18th, just over 2 weeks post-op.

Here he is, just about 2 months post-op enjoying his seat on Grandpa John's new couch. :)

And I just took this picture this morning while enjoying some Jake the Pirate time - you can see how much has changed in the last few months. I actually think he might need a hair cut soon!

::Knock on wood:: We can happily report that Cameron has suffered from just one seizure post-surgery when he had a virus that caused a high fever in November. He's sick today for the second time since October 30th, so he's home from school resting, drinking lots of fluids, eating extra fruit and hoping to feel better quickly! Sickness brings on a whole new feel of anxiety when there's a fear of seizures and ER visits, and loopy-dizzy-child creating medications. So we ere on the side of caution and I take a sick day to hopefully prevent all of the above!

Cameron has a follow-up MRI scheduled for March 11th, followed by an appointment with Dr. Bauer (Neurosurgeon) later in the day to check on how the surgery worked, from an internal view. He will see Dr. Morse (Neurologist) in April (unfortunately, this follow up was supposed to be in February, but his schedule is really jam-packed).

In other news, the surgery seems to have helped Cameron in more ways than just (hopefully) becoming seizure free. in December we had a meeting with Cam's Preschool teacher who said he seemed much more balanced, aware and less impulsive. I think I mentioned before that he was meeting his PT goals within the first week of being back to school! He's well behaved and pays attention more, and his teacher said he's cognitively at the level of a 4.5 year old! Go Cam!

We wanted to send a huge thank you to everyone as we begin to (finally) get the bills from Cameron's operation and hospital stay - the donations we received have covered the cost entirely, as well as cost from his PET scan, SPECT scan and likely the MRI in March! We are eternally grateful for all of the help and assistance we received from each and every person and family. We honest and truly cannot say thank you enough!

Here's to a healthy, happy, seizure-free New Year!