July 23, 2015

Ten days and counting

I woke up this morning with the surreal realization that Evan will have surgery ten days from today. It has been scheduled for a couple months, and in my mind it has always been so far away. Today we went to NYC for pre-surgical visits and Evan will have 5 appointments in the next 2 days. 


The scheduling aspect of this surgery is pretty chaotic but we have a place to stay and are lucky enough to have family who will join us in NYC and stay with Aria at home so she can take a class she's interested in.

Going through this process a second time is a really different feeling. The logistics are easier but it was harder to get in the right head space. What I know about this experience is that it will challenge us in ways we never expect and as prepared as we think we are, there will be surprises. We will have experiences ranging from inspiring to unbearable and will not be able to plan how each day will go. Surgery days are the hardest and are filled with anticipation and lots of just waiting around.

Understandably, Evan is nervous and we do our best to ease his concerns with honest and optimistic answers. We have had a lot of challenging conversations lately!

Sometimes people say they don't know how we do it and I usually make a joke about being addicted to coffee. If I really think about it I can honestly say I don't know how we do it either. As a parent dealing with a child's chronic medical condition you cherish what goes well and no matter how hard things are on us, the hand Evan has been dealt is so much harder. He has a string spirit and always manages to rise above his own circumstances. Evan bounds through life with a confident smile and is always ready with a joke. His laugh is infectious and he has a way of drawing people in. We look to Evan for strength and guidance and if we are wise we follow his lead.

July 12, 2015

Seizures in the North Woods

Rob and the kids are in northern Minnesota at my parent's house and I will be there for a long weekend next week. 


This beautiful part of the country with idyllic lakes, mild temperatures, gorgeous vistas and the nicest people you'll ever meet is a terrifying place to be when Evan has a seizure because they are so far from a hospital. The nearest hospital is 30 miles away and the nearest hospital with a pediatric epileptologist is 60 miles away.

To make things interesting Evan has had three seizures in the last 24 hours, much more frequent than his norm. He has also had emergency medication for each seizure. We start to be concerned about possible respiratory failure when giving him so much emergency medication in such a short time span. I emailed his neurologist and she called Rob almost immediately. We have increased Evan's normal medications and if he has another seizure he will probably have to be transported by ambulance to the hospital.

It's hard not to be there with all this going on. I know Rob is perfectly capable of handling this but it's just not the way I like to do things. 




June 27, 2015

fMRI Success!

Yesterday Rob and Evan spent most of the day traveling back and forth between Virginia and New York for a second try at getting an fMRI. It was hard not to be there but I'm so proud of Evan for being such a trooper.


Evan came through with flying doors and did a great job not only with getting the IV but also the long MRI process.

He was heavily rewarded with Pokemon cards, ice cream, pizza and frozen lemonade. All well deserved in my book! This stuff isn't easy for most adults and Evan is a true champ!

June 22, 2015

Finding Peace with Frustration

Yesterday we spent Father's Day in NYC and had a fantastic time as a family. We strolled through the city, saw Blue Man Group and had dinner at Mandoo Bar, our favorite restaurant in Koreatown.


Today Evan was scheduled to have a Functional MRI (fMRI) before we left the city. This is basically a specialized MRI used to map brain activity. It requires an IV to inject contrast during the scan so we showed up early to get the IV. Evan has difficult veins and a decent amount of phobia of needles -- a direct result of bad IV experiences.

We arrived at the appointment hoping for the best. Evan always says he prefers to have the IV in his hand vs. arm and this is where things always start to take a turn for the worst. Today was no exception. After some effort to cajole Evan into letting the nurses look at his arms, he points to the tiny veins on his left hand and tells them he wants the IV there. It's a long process to get him to let them pick up a needle, including tears and hyperventilating. Finally, I get him to take a deep breath and focus on me and the newly opened Pokemon cards that I slowly reveal as the nurses work. On the second card I know there is a problem. Evan's focus is strong and he doesn't flinch. It looks like they are fishing for the vein. Evan holds steady, his gaze contradicting what I see when I glance at his hand. Three more cards and the nurse pulls everything away from his hand and holds gauze over the small mark. She blew the vein. I show Evan the rest of the cards and he looks at his hand and then at me, in horror.

We both know this means they need to try again and I feel like I have somehow let him down. Over the course of the next two hours we try to gear up for another attempt. Evan is resistant. We try everything to calm him and encourage him to let a new nurse try a bigger vein in his arm. He cries, hyperventilates...we explain the importance and try to encourage him to let them try once more... The nurses give him breaks...this goes on and on and on. His appointment slot passes but they say we can still do the fMRI if he gets the IV. More tears, hyperventilating and failed attempts to convince Evan to let them try one more time. In the end he refuses the IV.

We leave the office and we are all exhausted, frustrated and deflated. It's a mixed bag. We are frustrated with the nurse for messing up, with Evan for not trying again and with the knowledge that we have to come back to New York in a few days to try again. 

We are on our way home now and the frustration has passed. No sense dwelling on what we can't change. We will be back in New York on Friday for another fMRI appointment and we will arrive hopeful that Evan will have a better experience.


June 21, 2015

Migraine...seriously?

Yesterday Evan was super helpful and cleaned the bathroom! This is an optional chore and I have told the kids I will pay $5 per bathroom any time they want to make a little extra cash and Evan took me up in the offer. He was excited to raise the last of the money to get a new Skylander figure because apparently we don't have enough already! 

He did a great job and then a half hour later complained of a headache, then nausea. We started going down the list...is he sick, is it a reaction to his meds, is it the chemicals in Soft Scrub, is it something else?

The headache got worse,vomiting began and sleep followed. Migraine, I thought. Pretty classic symptoms followed by some head sensitivity afterward. I may not be a doctor but I am a seasoned, although only occasional, migraine sufferer. A quick google search revealed bleach is a common trigger for migraines so I'm guessing that's our culprit.

We will bring it up with his neurologist  but I can't help wondering how many more things are going to be thrown at this kid! He was feeling great in the afternoon and in true Evan style, you would never know he had been down for the count just hours earlier. Evan also had a seizure early this morning.I hope this is a one time thing and not a new trend. I say "no" to the migraine / seizure package deal, thank you very much! Enough is enough!

Now I will happily join the yuppie ranks and start looking for organic, no odor cleaning supplies than work half as well and cost twice as much!  

June 05, 2015

Step Forward to Cure TSC: National Walk

The past year has brought more medical testing in addition to cause for hope for our family.

As Evan's seizures have increased, we have seen him struggle with additional challenges regarding memory which has also caused some educational difficulties. We knew it was time to step up his medical treatment and he spent 6 days at NYU Hospital to be evaluated for another brain surgery. The surgical process is a series of 3 surgeries requiring Evan to spend most of August in the ICU. This is not a decision we have taken lightly and Evan has led the way, telling us that any risk is worth stopping his seizures. He has tentatively been scheduled for surgery on Aug. 6.

In addition to this news, his recent MRIs revealed a small tumor on his liver and several tumors spread across both kidneys. The largest kidney tumor is 3.2 cm. and although we have spent many years watching it slowly grow, the time has come to take action. We are fortunate that in 2012 the FDA approved a medication that can actually shrink this type of tumor, literally changing the course of treatment for Evan! There are side effects, including a weakened immune system so we will wait until he recovers from surgery to start this medication.

Although this sounds like an overwhelming medical scenario to deal with, we are filled with optimism for the success of this surgery and the likely outcome of shrinking Evan's kidney tumors. On days that are tough, I only need to look at Evan for strength. He is always positive and ready with a joke and a smile and his laugh is infectious. He still participates in advanced curriculum coursework in math and language arts and is well-liked by his classmates and teachers. He has truly come a long way and our hopes for his future continue to be bright.



We are currently looking forward to joining the walkers that will come together on the Mall in Washington, D.C. to raise awareness and funds for the Tuberous Sclerosis Alliance (TS Alliance). So much of what we are thankful for is due to advances in medical research funded by this organization, so to say they are near to our heart is an understatement. I have also been working for the TS Alliance for about 3 years and I feel so fortunate to know that everything I do makes a difference for Evan and so many people living with TSC.

We will be walking as the Seizure Tracker team again this year and hope you will consider supporting our team in honor of Evan. Check out our individual pages by linking from the main page...

Team Seizure Tracker walks for TSC!

Thank you for being part of Evan's team!

Lisa, Rob, Aria and Evan

May 09, 2015

Freedom!

There is not much that feels better than being released from the hospital after a week of living there! Eauwr this week I said all I wanted for Mother's Day was to be out if the hospital and I got my wish!

This is what freedom looks like:

Last night Evan talked about some of his concerns about having brain surgery. We told him we wouldn't make this decision without him and that his opinion is very important. Nervously, I asked him if he wanted to have brain surgery and he said, "I'll take any risk to cure myself." 

He also talked about missing Aria:

Evan: dad, if I tell you something will you promise not to tell Sria?

Rob: (hesitantly) ok...

Evan: I really miss Aria. I wish she was here.

I wouldn't have posted this except that when he spoke to Aria on the phone this morning, the first thing he did was tell her how much he missed her. The boy cannot keep a secret-- not even his own!

We are on our way home now and will be back in time for dinner! It will be great to see Aria and Grandpa Jim!