Sunday, July 21, 2013

Recovery at home

Madeleine’s Blog

July 21, 2013
So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10

On the shuttle, headed for home at last!
Madeleine has been home recovering since Tuesday :) Both she and her mom were so excited to be heading for home after the long, unanticipated stay at NIH. During the last part of Madeleine's hospital time, she was able to receive occasional "passes" to go outside the NIH hospital complex for some shopping and meals, but there's just no place like home!

Almost two weeks after her surgery, Madeleine's doctors made the decision to release her with one of the drains still in place, so that she could fly home and recover there while the fluid drainage gradually decreased each day. (This problem happens in about 20 percent of cases because of the extensive nature of this type of surgery, and its potential affect on several of the bile ducts that come off the liver.) So, the plan is to have the drain removed here in Santa Rosa when it is no longer needed, let her heal up for a few days after that, and then she'll go back to NIH for extensive baseline scans and the news about which part of the TIL trial she will be in.  

Flexibility is definitely needed when dealing with this type of situation! Fortunately, she has had excellent care so far at NIH, and we are blessed to have lots of specialists working on Madeleine's case to problem-solve situations like this and come up with the best treatment options for her. 

This is from Madeleine's Facebook page:

"Never give up hope."
"Before I went in for surgery, my dad pulled out his phone and showed me a picture of the horse shoe necklace I wanted. He smiled and told me he'd get it for me.

My parents mean so much to me. They try their hardest to do what they can to make me happy and help me overcome every challenge I'm faced with. As the card says, "Never give up hope." 

Now, every day I wear this necklace, I will remember to never give up even when I feel like I can't make it. Love you, daddy."



Dave Cindy said...

So beautiful! We will never give up hope! We love you Our Sweet Girl!💖

Sparklinglady said...

you are amazing Madeleine!!

Lucy said...

Glad your doing O.K.

Auntie Leslie said...

Hi Madeleine,
I hope you are enjoying this time at home. You and your mom definitely needed to get back to CA. I know Grandpa loved seeing you. Love the necklace...who doesn't love to get those aqua blue boxes with wonderful surprises? Take care.

Amber said...

Hi Madeleine and Family, I found your blog while searching for Make-A-Wish info for my own Madeleine :) I am impressed with your spirit and endurance. My Madeleine (age 5) looked at the pictures on your blog with me and she thinks that Madeleine looks like a Barbie doll, I agree! She is stunning! I will continue to follow your journey, best of luck to you.