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!

Six Week Post-op & an ER Visit

I'll start this 6-week post-op update with the news that Cameron has been doing remarkable! We had our first Parent/Teacher Conference last Friday (Dec 6th), where Cameron's Preschool teacher told us that he has seen vast improvements in many of his skills socially and with his movement, not only from the start of school, but even more so since his surgery. He said he's noticed that he's not quite as impulsive as he had been before, meaning he'd be much more likely to walk up to another student and take a toy out of their hand, but he hasn't done things like that in the last month, really. He also has met some of his goals in physical therapy since surgery - for instance, he did a 1/2 kneel on his right foot, which he had previously not done because his right side was so much weaker and unbalanced. Most people who have interacted with him have noticed how much better this gait pattern is. He's not falling nearly to the extreme that he used to, and he's overall more balanced and confident in his movement. We're pretty sure it's not a coincidence, but we haven't had another appointment with Dr. Morse to discuss it. He had mentioned prior to the surgery that it's possible once they removed the sections of his brain that weren't functioning, it might help other areas to work better. Shawn likes to describe it like a surge protector. If your surge protector stops working, that doesn't mean your TV, computer, DVD player, etc. aren't working, they just need to be plugged into a different outlet. We're hoping that this really is what is happening!

I really had hoped to write this post saying that Cam hasn't had any seizures since his surgery, unfortunately his streak of 5 weeks and 4 days ended on Sunday night. He came down with some sort of stomach bug on Sunday and spent the morning throwing up. Throughout the day we had him resting, watching movies, etc. I went to put him to bed Sunday night and he felt really warm, so I gave him some Tylenol for the fever. Every night when he goes to bed, he sits on my lap and we pray. While he was sitting with me, he jumped, like he was scared of something. So I asked him if he was okay, and he didn't answer. I turned the light on and he looked fine, so I turned it back off and he says "Mom, I said yes." So, we continued to say our bed time prayers, then I picked him up to put him into bed and he was completely limp, totally dead weight in my hands. I laid him down and reached to turn the light on and no sooner did I turn around that I realized he was having a seizure. It happened so fast, and was the worst, most severe one we'd seen. He was unconscious and having a hard time breathing because his mouth was full of saliva. Normally we're supposed to wait 5 minutes before administering the Diazepam, but neither Shawn nor I felt comfortable waiting, so we gave it to him 2 minutes after it started, it took another 4 minutes to stop. In those 4 minutes we got in touch with the Pediatric Neurologist on call at Dartmouth who wanted us to take Cameron to the ER. We've never taken him to the ER for his seizures except for the very first time when he got admitted and diagnosed, so this was a little odd for us. The Dr wanted to make sure there was no underlying problem, because Cam had had a cold, so if he had an upper respiratory infection, or something related to his surgery, it needed to be addressed.

He checked out fine for any signs of meningitis or a UTI, which would be their worries related to his surgery - the ER doc told us it was highly unlikely that he'd have an infection related to his surgery after almost 6 weeks, but they check it all just in case. They also did a chest xray that came back all clear. We spent almost 4 hours in the ER, and were sent home around 12:30am with an order to alternate Ibuprofen & Tylenol to keep his fever down, and to check in with Dr. Morse's office in the morning. The poor kid was so drugged up from the Diazepam, Tylenol and they gave him Motrin in the ER, that he passed out in the loud, busy ER and didn't really wake up until Monday morning. (You can see in this picture that his incision is healing great, too!)

Monday morning, Shawn and I both stayed home to find out what DHMC wanted us to do. We had to go get his labs done, which is a two person job, and wanted to make sure he was okay. Throughout the day he was on & off with the fever, even with being on an alternating dose of Tylenol & Motrin. DHMC decided they wanted Cameron to be on a round-the-clock dose of Lorazepam, which is the medication we used to give him if he had a couple small seizures in a day. The Dr wanted him to take it 2x on Monday, then once in the morning and once at night on Tuesday, regardless of whether he still had a fever or not, as a preventative measure since his seizure threshold was obviously really low. We were willing to do whatever it takes, even though it meant Cam was basically going to be a bit drugged up for the next two days, it was better than the alternative.

When I talked to the nurse, I explained what had happened and the first thing she said was "Oh Cassie, that's heartbreaking." She said not to panic though, that this seizure certainly doesn't mean the surgery didn't work. Their thinking is that his brain is healed enough from surgery for his day-to-day activities to be manageable, but the stress of a 102 fever was too much for his brain to handle so soon after surgery. We are optimistic that it really was just caused by the fever!

Meanwhile, it's Wednesday now so he's no longer on the Lorazepam, thank God - it made him so loopy and even more unbalanced that he had been before! We were sitting at the table eating dinner last night and Shawn & I couldn't help but laugh at some of the things he was saying and doing - he was like a little drunken sailor. Luckily, he hasn't had a fever since Monday night and he's getting back to normal. :)

Excellent!

Using this post as a way to help myself stay awake while watching the Patriots game tonight!

Cameron had his post-op check up today and it was a wonderful appointment. We saw Dr. Scott Lannon who said that Cameron looks "excellent". He told us that Dr. Bauer was going to be thrilled to hear about how well Cam is doing! He said his incision is healing beautifully and even said out loud "Wow, he did a great job with that!" - I'm thinking he was referring to Dr. Bauer's handy work. :)

After we came home from the hospital two weeks ago, we noticed that Cam seemed to have some increased sensitivity to a few of his senses. For instance, he would be nearly in tears when the sun was in his eyes, always needing his sunglasses or pulling his hat down as far as he could get it. He also loves water - swimming, showering, bathing, playing, etc. After his surgery he wanted nothing to do with it, he kept telling us the water was too cold. We had no idea if it was just coincidence since he hadn't been allowed to shower for a week or if something had changed. Dr. Lannon told us today that sometimes after brain surgery kids can have "pseudomeningitis", meaning he has symptoms that simulate meningitis, but there is no actual inflammation of those membranes, and the symptoms gradually go away. He doesn't have these sensitivities any more, so there is no worry that it was something more serious.

He's had a great few days back at Preschool, and when we went to pick him up early today, we saw they had taped The Sentinel's article to the front door (we don't normally go to the front door because they come get the preschool kids from outside). The woman in the front office told us a nice story about her foster daughter who has been seizure-free for 15 years since having a similar surgery when she was a teenager. It's always so nice to hear success stories from people who have shared similar experiences.

We've had a great two weeks spending some serious Q.T. with Cameron. We've taken him to two local high school football games (albeit, both home teams lost...), and he loved every second! We visited Shawn at work and ran around the news room, watched a few movies and a lot of Sesame Street, made a scrap book and spent a lot of time playing. We were so happy to hear that he is healing right on track!

His incision is looking great, too. He hasn't worn one of his hats in two days, but did tell the doctor today that his head is itchy. He hasn't been touching it or picking at it much though! He really is a trooper.

We will have an appointment to see Cameron's Neurologist - Dr. Morse - in January, and we see the Neurosurgery team again in Feb/March. It's routine for them to do a follow-up MRI three months after surgery, so Dr. Lannon said he'd schedule that himself. If everything looks good, then Cam will follow up with Neurosurgery yearly. Dr. Morse will still be seeing a bit of us for awhile though! Cam has had no seizures ::knock on wood again:: and we are hopeful that will continue!

We have been blessed with the opportunity to have another benefit fundraiser organized for us this Wednesday, November 20, 2013! This time it's in my hometown of Pawtucket, RI at Sullivan's Publick House. It's a really awesome place that does Community Pint Nights on Wednesdays, where a keg is donated by a brewery and proceeds from the $3 pints are donated. My cousin Meaghan and her husband Greg, among others I'm sure, have organized some fantastic raffles including a 2013-2014 Official Boston Bruins team autographed hockey stick! (SWEEEEET!) I will be there, but unfortunately Shawn won't be able to make it down as Cam still has 18 years before he's allowed in a bar. ;)

Again, thank you for the continued support! Go Patriots!