The Impact of a Stranger

William - 9 years old

Michael - 5 years old

I’m a teacher and well, crying over other people’s children kind’ve comes with the job. And I knew that when I found the ADSL facebook group that I would sometimes be subjected to stories of children not doing well and that it would hit really close to home on occasion. Honestly, I craved that as much as I was terrified of it. Because as much as I feared knowing, at the same time I needed to know. There was a period of time where I went seeking every story of a dying ADSL child that I could find. I wanted to know what the end looked like and his fleet of doctors, who had never encountered another patient with ADSL, couldn't tell me. And sure, doing this would throw me into emotional turmoil for a day or two, but it was also reassuring because now I could appreciate Cyrus's bad days and know - this is not the end. This is just a bad day.

Katelyn - 3 years old

Since being part of the group and being friends with its members I follow so many of these children's stories with avid interest. I am constantly showing pictures and reporting how they are doing to my husband. Doesn't Gabriela look like Cyrus, I ask him. And look at Hamish - he's so happy! See Katelyn's expression - Cyrus does this sometimes too! She has pneumonia again by the way. And Matthew is in the hospital because they can’t control his seizures at all. But Carson is four years seizure free! I honestly didn't even know that was possible with ADSL!

Hamish - 6 years old

He used to always respond with “Who?”, but he’s starting to recognize the names. Either that, or he's just learned that if I mention a kid's name he doesn't recognize that it's probably one of these kids. Sometimes, when the news isn't good, he’ll get silent like he doesn’t know how he feels about it either.

Matthew - 12 years old

And now one of these children seems to be on their last stretch of this journey. His name is William. And I find myself affected far more strongly than I thought I would be. The morning I read the news I couldn't stop crying. And I must confess that I have never before cried for a child I have never met.


But of course, this is so much more personal than that. Because every time I hear or read one of these stories, I feel like I’m seeing my own future.

Hadyn - Lived 14.5 months

And I know that right now, this is so not about me. I just want this mother to know what her group has meant and still means to me. And I want to thank everyone there for being so vulnerable. For sharing your joy and your pain, for sharing the impossible choices you have had to make, for being a role model. I'm amazed at your capacity to express your understanding in so few words. To express your compassion and your love for essentially total strangers.

Sydney - 7 years old

It’s strange to be connected to such a unique group of people from all over the world. And part of me wishes that we didn’t have a reason to know each other - that my child was healthy and that your children were all healthy, but I also cannot put into words how much comfort your presence has brought me even if we do not always talk deeply or often. And so I’m grateful. I'm grateful that my family is going through this during a period of history that has access to this kind of connectivity. That we are not as isolated as maybe we would have been during a different time.

Jude - 5 years old

And more than anything, I want you to know that your sons and daughters - whatever they have to struggle through, whatever they have to ultimately face, whatever they cannot and may never do - they have touched my life in a profound way. Even from half a world away. As I know that they have touched you. 

I wish I could offer you some form of comfort - even just a hug. But words are all I have. Know that I'm thinking of you, your child, and your family. I am amazed by and look up to you. And while I dread the day, I hope that I will be able to live up to the example of grace and strength you have set when the inevitable time comes.

Carson - 5 years old

Gabriela - Almost 3 years old

Carola - 10 years old

You have touched so many lives William.
We love you.

"48 Hours"

There is a certain kind of patience and determination you sometimes need to manifest when you have to call the specialty pharmacy.

The specialty pharmacy is where you get prescriptions that are not typically kept in stock by a regular pharmacy near you, either because it is a highly regulated substance, or because no one else in the country needs that drug! So instead of picking it up, it has to be delivered to you! 

Sounds convenient right?

Not even close!!

Cyrus has been getting one of his prescriptions (Sabril - also know as Vigabatrin) through the specialty pharmacy. And there's been more than a few headaches involved in that - basically once every 6 months when the refills run out and the prescription is renewed, they always have trouble getting that first batch to us for various incomprehensible reasons. I don't even know what they all are at this point. (Kyle's the one that's had to deal with most of it).

So when I told Kyle that the pharmacy had called and they didn't carry Cyrus's new prescription (tetrabenazine - it's supposed to help with his uncontrolled movements) and that they had referred us to the specialty pharmacy and they would call us within 48 hours and that we should have our medicine within a week, he groaned.

That was June 15th.

They were nice enough to call me the next week way more than 48 hours, but who's counting? This was not a big deal because this new medicine is not crucial even if feeding him is way more difficult than it used to be. Now that we've gotten him to go to bed consistently with the melatonin (the movements were making it difficult for him to go to sleep - he'd like hit himself in the face right as he was falling asleep - made everyone miserable) this prescription didn't feel nearly as urgent. I somehow missed the actual call, but she left a nice message saying that she needed to ask me some questions before she could proceed with filling the prescription.

So I called them back the same day and I had the privilege of speaking with a gentleman who essentially told me that he had no record of them calling me at all and that he had no idea what they needed as there were no notes in my account. But if he had to guess, it probably had something to do with getting prior authorization for the prescription. And that I should call my doctor to make sure that happened.

Really? You want me to call my doctor because you might need help getting the prescription approved by insurance. Was it rejected or not? Can't you run it now and see if it is approved or not? The regular pharmacy can! No?

Then he tells me that once they have prior authorization someone will call me within 48 hours to schedule delivery. And I'm still not worried about it. We're actually experimenting with a alternative remedy to control the movements - and it seems to help quite a bit.  When we were on vacation we ran out and the movements exploded in intensity. It's made out of wolf spiders - we call it the spider medicine (actually called Tarentula Hispana). So now this prescription feels even less urgent.

A week goes by! And around this time I realize that the Vigabatrin doesn't have any refills left (Yay!), but I still have a lot of it left so still I'm not too worried, but decided that we should take care of getting a renewed prescription because... well, this is important and... you know - specialty pharmacies.

I do call the doctor's office at this point and Perla (who handles all the prescription and pharmacy shenanigans) is so completely on top of it. She calls in both prescriptions to the insurance and gets them prior authorized all the way through the year 9999 (I'm not even kidding), then she calls the pharmacy to confirm this with them, and then she calls me and gives me the pharmacy number and the stupid menu #s I have to press to get to the right person without listening to the never-ending itemized list (they do it based on what medical condition you have as they have over nine different divisions that handle different types of drugs - I'm sure that has nothing to do with their inefficiency at all). Then she gave me her cell phone number and insisted I call her if I ran into any trouble at all!!

So anyway, next phone call. Pharmacy says they have the prescriptions and the prior authorization, but there's an unexpected delay. And they would call me within 48 hours once they have resolved their system error to schedule delivery.

Another week goes by. I thought that hours were a standardized unit of time, but clearly I am wrong.

They call me again on July 6th. And yeah, now I know the exact date as I started keeping a log! So she actually tries to schedule a delivery, but the copay for the new prescription was $150, and I don't exactly get paid during the summer and I thought I was getting a 90 day supply so that amount wouldn't be too bad, but she said she was only sending a 25 day supply. She was nice enough to offer to apply for copay assistance and promised to call back... wait for it... in 48 hours!!

So yeah, that didn't happen. I'm sure you're as shocked as I was.

I called them yesterday, July 11th, more than a little frustrated, and now I'm starting to get worried as I've been watching the Vigabatrin supply dwindle.  I asked for an update on the payment assistance and if we could schedule delivery. This particular lady told me that the pharmacy will not apply for copayment assistance - that I had to do that myself. And when I told her that the previous person had said they would apply for it on our behalf - she insisted that they never do that. Then she gave me a few numbers I could call to request that help.

I asked if I could pay for the first month now and apply for assistance for future refills. At least that way we'd finally have the prescription and would know how well it worked so we knew if it was worth it. She said sure!

And then she quickly changed her answer to no, explaining that there's a problem with the prescription.

What do I need to do to fix this problem?

I have to work on it. The prescription is switching systems. I have to work on it and then I'll call you back.

(I wouldn't bet on it... )

Okaaaaay. Can I schedule the other delivery for the vigabatrin?

No, the whole account is locked up. I have to work on it. I will call you back.

Is there a number I can call to check up on the progress?

Just the main number...

The second I get off the phone I go over to our little home pharmacy station and count out all the vigabatrin we have left. We have ten days worth. Then I start crying, wondering if the bureaucracy and inefficiency of the pharmacy is going to cause us to run out of medicine - wondering if the withdrawal from the seizure meds will break our seizure free streak. If this lady on the phone knows what it's like to watch you kid have five seizures or more every single day - to go months without him cracking so much as a smile.

Kyle was quick to reassure me that we could always call Sabril directly and ask for a sample (we had to do this once before when the pharmacy was being annoying). And I figured I would call Perla the next day to ask for support and advice and started outlining the sob story I was planning on telling to the next pharmacy phone worker I would talk to if things didn't get resolved.

I figured I would call them one more time before I stuck Perla on them. (She doesn't take prisoners). And this guy was awesome! I called and said I wanted an update on what was wrong with my account so that our prescriptions could be delivered.

He told me that there was nothing wrong with the account. That they had just sent the prescription to the wrong branch to be filled. I asked him what I needed to do to fix it. He said I didn't need to do anything - just had to stay on hold while he transferred me to the Sabril (Vigabatrin) branch and they could fix in in just a few minutes. He also told me not to get off the phone until everything was resolved and scheduled. And I didn't even have to tell him my sob story!

Then I had the absolute privilege of speaking with Gabriela in the "Sabril branch". She asked me to confirm a few things, asked how much we had left, then noted that we had received our last shipment in early June and were definitely due for a refill, and immediately scheduled it for this week!

Then I asked her about the tetrabenazine. She said that it was on hold because someone was still working on assigning a grant to it - you know, to pay for the copayment, but that if I wanted I could pay for it now myself and they would ship it too! So they do apply for assistance for you!

So yay! Only took 28 days!! Longest 48 hours of my life!

I figure my new strategy anytime they start telling me something that doesn't make sense or is not specific enough for me to understand the problem, to just hang up and call back until I get someone that is skilled in clear communication and reading notes in their system.

In other aspects of our lives:

We took Cyrus on a road trip to SoCal to visit his uncle and another close friend of ours. He handled the long hours of driving like a champ - only would start fussing after I had gotten away with three hours straight of driving. And when we took him out of the car, he rewarded us with beaming smiles that lasted at least twenty minutes! So I guess we have a new trick for putting Cyrus in a good mood! Just torture him with a long car ride first (we did get to hear some pretty mournful and resigned sighs along the way).

Then right when we got home, we subjected him to a visit from three of his cousins and he handled that like a champ as well. We did take him to the beach and I think he found it a little too bright and or too windy as he wouldn't keep his eyes open (he was clearly awake) - he was also super cold so we had to wrap him up.

He seemed super interested watching the girls play both with toys and their food, or on occasion him! And then we have spent the last few days at home settling back into our routine as I am back at work for two weeks and Kyle is taking Cyrus to all his appointments. I hear he is flying through therapy sessions and being just a good natured little guy as always!