Whirlwind of Appointments

We successfully maneuvered our way through 5 appointments in NYC in two days. And we are all exhausted!

Yesterday we met with Dr. LaJoie who is back at NYU! We followed her to Long Island and she moved back to NYU just in time for Evan's surgery. The stars are alignment for Evan! The best possible news is that she will be on hospital rotation in August so Evan will be managed by Dr. LaJoie and Dr. Devinsky throughout the surgical process from the neurology side of things.

We stayed at the Ronald McDonald House which is always a beacon for weary hospital travelers. We had a warm welcome from both new and familiar faces and we were so grateful for a catered Mexican feast donated to the families staying there. After dinner "The Bubble Man" was in the house for entertainment. I never realized how relaxing it is to play with bubbles. You have to move slowly and breathe evenly -- I think it was tai chi in disguise!

Today we checked out early to begin our marathon of appointments. Cardiology is a stopping point for all surgery patients and that went smoothly. Evan's heart is perfect so no worries there! One of Evan's PICU nurses from his first surgery in 2007 is in this office so we had a mini reunion!

Hematology was a rough stop. Evan has a considerable amount of anxiety relating to having a needle even "look" at his arm. We had a full room with two nurses and a child life specialist patiently focused on helping us turn Evan around. It took a lot of coaxing, discussion, negotiation, bribery and distraction to get to a point where he willingly gave up his arm. At that point he sat there as still as can be while the nurse got the vein on the first try and filled about 8 different viles. After that ordeal we were all spent and hugged goodbye like we were long lost friends.

Next stop was pre-surgical and It was a pretty smooth visit. It was a long appointment to go over medical history and meet separately with a nurse and anesthesiologist.

We finished the trip with a visit with Dr. Golden Hands himself, AKA Dr. Weiner. It is always a pleasure to see him and he has a quiet way of whisking away any nervousness as he talks through the process and answers everyone's questions. Evan was completely engaged and had several questions about the surgery and recovery. It was fascinating to see him take an active roll in the discussion and Dr. Weiner commented that Evan is a young man now and shared how much he enjoyed talking with him. He met Evan when he was 3 years old and has been a central part of his journey.

Now we are on our way home with our bellies full of New York pizza and only a few more days before we return. I am at confident about our decision and know Evan will have a positive outcome. I feel nothing but optimism about our next steps.

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.

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. 

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!

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.

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!  

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