Lola Strong- Pediatric CNS Vasculitis

03/18/2020

Lola girl falls under a few of these categories. Thank you for being mindful for her and other vulnerable people. There’s more of them than you would think.

02/29/2020

Lola’s autoimmune disease is classified as a rare and life threatening disease. Her immune system attacks the blood vessels in her brain and spinal cord restricting, sometimes completely, blood flow.

Because these “rare” diseases affect so few people there is very little, of any, money set aside to study them.

Rare is many.
Rare is strong.
Rare is proud.

02/27/2020

Please do. It's the best way to prevent spreading all the yuck.

12/07/2019

Can we just talk about how loved this little girl is for a second?! She had an amazing birthday party with so many great kids.

She was also blessed with a cake donated by the amazing and talented Kourtney at Lavish Wish we gave her little direction and it was absolutely perfect.

And her amazing teacher Mrs. L and Sign Gypsies set up the amazing and thoughtful sign in the front yard as a surprise for her!

12/02/2019

It’s cold and flu season. Our girl has NO immune system. Please keep your germs at home. And good handwashing is the best way to prevent the spread of illness even when you’re not sick.

11/28/2019

Happy Thanksgiving! We are especially thankful for our Lola girl this year. 💜

Happy Thanksgiving to all our PSW families, friends, supporters and warriors. We have so much to be grateful for!

11/25/2019

Check out that balance! And all while holding her taco 🌮 😂

To be able to watch her keep her balance in this way is unbelievable. She has grown leaps and bounds from where they told us to expect her to be. According to our first estimated timeline this girl should still be relearning basic life skills. And while she still has deficits that she’s working through daily she never gives up. Such a beautiful little spirit. We are so fortunate to get to be her parents. 🥰

11/21/2019

***late post***

Mom fail 🤦🏽‍♀️ Lola had another MRI. They were checking for any new lesions or damaged areas. Her brain looks great! No new flare ups and it looks as though some of her damage from before is healing 🥰🥰🥰

Also, we have an official pill swallower on our hands! 🙌🏽 you go girl

11/10/2019

This month Lola is transitioning from her chemo infusions to an oral medication that only comes in pill form.

And let’s be honest the struggle is real 😂😂

She’s a trooper and still can find the fun in the worst situations.

10/17/2019

Lola, stop being so darn cute!! This little lady got her special “wish kid” ears for Disney!

10/07/2019

Lola had a very important neurology appointment today! She’s officially 6 months post strokes and diagnosis. She is looking great, and while there are still some deficits she has come farther than anyone could have expected.

Tomorrow is her last round of chemo 🎉 she will now begin daily oral immune suppressing drugs, in addition to her seizure meds and blood thinners. We’ll be back bright and early. They will also start blood work to determine what immunosuppressive drug she can metabolize the best.

Also got word she is being included in the international Brainworks study. Hopefully some good will come out her illness.

We got the all clear for Disney. They don’t think she’ll even need a mask 🥰

09/30/2019

Lola stayed home sick from school today but we got a fun surprise in the mail! Soon enough we’ll be Disney bound 🥰🥰🥰