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!

May 08, 2015

2015 VEEG - Day 5

Today was a calmer day. Since Evan had a seizure last night there was no pressure or stress about getting the necessary information for a surgical evaluation. Also, because he had a seizure at 10:30 last night nobody had to stay up until 4am!

Evan didn't have another seizure but they decided to still do the SPECT scan. The radioisotope was injected at 3:00 pm and he had the scan at 5:00 pm. It was impressive to watch him lay perfectly still for 30 minutes without sedation. I know a lot of adults who would have trouble with this. The machine zoomed in close to him and rotated.


At this point, we started him on his meds again and hopefully will get discharged tomorrow morning. There is a bit of wild card though because if he has a seizure tonight they will probably keep us another day. We are hoping he doesn't have a seizure tonight but because he hasn't had any medication in a few days we don't know exactly how things will go as he ramps back up.

Fingers crossed for no seizures tonight!

May 07, 2015

2014 VEEG - Day 4

We managed to keep Evan up late again but we also had a new challenge: a stomach virus for Rob and Evan. They were both sick all night and into the day. Evan was given an IV medication for the nausea and Rob went to the ER for fluids and nausea medication. I spent a good portion of last night and today sanitizing and re-sanitizing -- our room now has the reassuring scent of bleach. The nurses gave me my own container of super strength bleach wipes and I am considering it an early Mother's Day gift!

Rob and Evan are both doing much better but we have all been quarantined, at least for today. Whenever people come into our room they suit up in a blue plastic gown we have been referring to as hazmat gear. Hopefully that restriction will be lifted tomorrow.

As for seizure activity, we had a busy day. He had a simple partial seizure at 7:15 this morning but it didn't evolve into his more typical complex partial status seizure. Then he had his typical seizure this evening. He fell asleep doing his homework and had a seizure shortly after that. We will have more info tomorrow morning.

We have also made huge progress on Evan's needle phobia. The nurses have been great and Evan keeps a keen eye on his IV port and was asking frequently if it needed to be flushed. They taught him how to do it and now he flushes his own UV when they come in! 


There is a special place in heaven for pediatric nurses!