Contact

Help us find a cure. 

Supporting research efforts together with

Follow

  • Facebook - Black Circle
  • Instagram - Black Circle
  • Twitter - Black Circle
  • YouTube - Black Circle

©2017 by Hope For Marian, Los Angeles, CA

Archive

Please reload

Tags

Please reload

The Second Treatment

May 2, 2017

I wrote an entire blog post about our second treatment and I did not save it. Oh well! Here are some pictures that tell the story of our trip, for the record Christine is 20 weeks pregnant and did 100% of the uber carseat installations. Bless her.

 

 Up and away! We had a whole row to ourselves on Southwest - heaven! Our Uber driver when we landed was a former Marine current Army from Tennessee. Got us to our hotel swiftly where they ordered groceries for us so we could let Marian nap when we got there.

 

 Went for a walk by the water, it was so beautiful! 

 

 Marian loved it and fell asleep on our way back to the hotel.

 

 The hotel put up Marian's tent and toys for us, made us feel so "at home" and happy! I've actually never been happier to pull up to a hotel. They did such a beautiful thing for us last time, it is a permanent light in a scary time. 

 

 Woke up very early to get to the hospital on time. For anyone who watched the Chicago news interviews, you'll note I did not use any of this time to do my hair. Registered at anesthesia and took "Main Street" to weave our way over to the professional building to meet with our incredible doctor before treatment. 

 

In the waiting area of the doctor's exam area. We got to meet a few new (to us) lovely NPC families including two girls who fly in from Western Canada every other week.

 

Marian about half an hour after treatment. We did the ABC and Fox interviews after her treatment, she was amazing and we are so grateful and humbled by the opportunity to share her story with both of the wonderful journalists who came to meet her. Marian loves her newly minted routine of graham crackers and apple juice with her sweet nurse. 

 

How cute are these dolls? These are from Child Life at the hospital, one is for Marian and one is for Emily to play doctor and patient - Emily loves them. 

 

 Back on Main Street again heading back to the professional building. Marian had a good snooze afterwards at the hotel while I watched Naked and Afraid on the Discovery Channel and Christine watched Upstairs Downstairs on her iPad - you can tell who has the more sophisticated television taste. 

 

We did venture out later for donuts. 

 

It was incredible to watch Marian on ABC and Fox Chicago that night. What an amazing opportunity and such an honor. Also, let me tell you, Chicago news is no joke. Things are happening in Chicago. I had no idea. 

 

The flight home was smooth although all three of us were really tired. We gave Marian half a Zofran before the flight per doctor's recommendation and that helped her motion sickness a lot, which is normal in kids after a lumber puncture. Marian was still tired but not nearly as tired as last time. We might raise her dose a bit next time to see how she does, she's at a very low level right now.

 

So happy to have another treatment under our belts! Chicago and everyone there is amazing but it is tiring to do 72 hour turnaround trips with a 19 month old. Hopefully we won't have to do too many more until we can transition to California. Next trip will be Paul and his dad - two men and a little lady in the big city!

 

 

Please reload

Recent Posts

March 15, 2019

October 23, 2018

April 16, 2018

Please reload