I wish it were a dream...

It almost feels like a dream or something. Something that I can't quite describe.

Jonathan says...it's easier for your heart to die the second time around.

I just feel numb. Detached even. In the moment anyway. Earlier at Dr. Pedi's office I cried. So did she. I guess it must be hard on the heart to watch a mommy trying to come to terms with life. With unexpected sadness. Honestly...after 8 months...we were really starting to believe this might be behind us. The IS anyway. We always knew we'd probably be dealing with other seizures...given Trevy's consistently abnormal EEGs. We just didn't expect this. My heart certainly wasn't prepared. And I was hoping to God that I was just a loon. I'd much rather be a loon.

Trevor's spasms are still mild. Although more frequent. He's having clusters of as many as 35 back to back seizures. I know this might sound crazy...but he knows. He knows when he's about to have a cluster. I know he knows...because he always comes to me...climbs in my lap & stares at me. With those big soul-eyes. While I watch him disappear 35 times in a row. And I can't look away. I desperately want to look away...but he's my baby. And he needs me.

I wish I could say it's an easier decision to use ACTH for a second round. Especially after it worked so well the first time. But it is not. I hate the drug. Passionately. I hate that the same medication that can potentially heal my son...will also cause him harm. I hate that we have to administer it. That we have to draw it up. Sanitize his beautiful baby skin thigh. Swaddle & pin him down. And finally...after a deep breath & tears are streaming...inject the needle into our own son & push the thick gel in. With every fiber of my being I hate that Questcor will make another $150,000 (or more) from my family. And as much as I'd like to go another route just to make a point...I will not use my son as a lab rat. We have counseled with some of the best neuro-minds in the country...and they have all pointed us to ACTH.

I'm waiting for the call. From Dr. Neuro. She's working out his treatment plan...and lining everything up for us. Trevy will be using Zonegran in tandem with the ACTH. Our hope is that we can start this at home. We hate the hospital. But if she has to admit us...she will. Of course...the hospital does not keep ACTH stocked. They can't afford to.

On the other hand...can you believe we have been offered at least 6 vials of ACTH! From families who have unopened vials...and want to donate them to Trevor. Leaves me speechless. Overwhelmed with emotion. The only words I can find are...thank you. Thank you...to each of you that offered Trevor hope.


Anonymous said...

{{{Hugs}}} Maybe you can make your statement by accepting the donations. At least Questcor won't make additional profits.

I hope it works permanently this time!


JSmith5780 said...

Steve Cartt, et al... that follow Trevy. I know you see (saw?) him as a success, because he was seizure free on your drug. But it's not, he isn't. And it sickens my heart and the others in the IS community that while this drug CAN work, and DOES work for many, it leaves a financial impact the size of California on these families and their insurance policies. You say you raised the cost to keep the company and this med alive, for future kids, but at what cost?? Are you happy in knowing that Trevor will reach his lifetime cap on his inssurance, when he's barely lived a lifetime? It's disgusting. It's heartwrenching and the IS community will continue to speak out and speak up against the policy of orphan drugs that wreak havoc on the financial lives of so many!

Danielle- I completely, 100% agree with Erin. Take the meds, sign a waiver releasing others from the responsibility of accepting their med and allow Trev to have the additional space on his lifetime cap for his life insurance.

hug that cutie for me.
P.S. Austin always knew too. Remember, he was even older than Trev is now when his IS hit and he always knew. And tell J that it never gets easier, no matter the seizure type. I wish I could say it did, but every new type that appeared ripped my heart a little more. Only now is it beginning to mend.

Marissa said...

Marissa knows too. She can't always tell us, but she knows and we can see it in her eyes if we look close enough.

~Mama Skates~ said...

unbelievable! see what ur love & advocation for trevy has done? i can't believe that u had all those offers for the unopened vials - GOD BLESS THOSE PEOPLE!

and i agree, signing a waiver & using those will b enough to screw questor out of the many more thousands of dollars they would have made off u!

i can't stop thinking about u danielle...i cried telling my husband the sad news last week & i find myself thinking of u & praying for ur family as i'm in the shower, washing the dishes, working on cakes, laying in bed, etc....i soooo wish i could b there for u personally & that there was something i could do to help u out while u're going through this. i won't stop praying for u!

hang in there - u're are so my hero! xoxox,

Monica, James, Connor McGuire said...

my heart absolutely breaks for you. i remember the day connor was diagnosed...I cried for a solid 24 hours. i couldn't look at him without crying. I guess the only thing just as bad as the seizures never going away (our case) is having them go away as a tease and then reappearing their ugly little heads. i hate these seizures with every ounce of my being. Cry when you feel like crying, scream when you feel like screaming. I agree with everyone else...accept those generous donations!!! As long as those vials are not expired...i wouldn't give Questcor another dime. We all know that you would do the same for all of us. Sending you many prayers and love, Monica

KC's Mama said...

I know I've said this many times already in the past few days, but I am sorry a hundred times over that you have to go through this. I'm sorry that you have to watch your baby disappear...no Mom should have to know what that's like. I'm sorry that your heart is breaking...again...in ways you never thought possible. I'm praying for you. I'm praying for your whole family and everyone who loves Trevor. I'm praying that between those moments of disapearing that his beautiful eyes continue to light up with that "I'm not gonna let anyone or anything take me down" sparkle. He's beautiful Danielle...but of course you already know that ; )