Friday, January 27, 2012

I laid awake most of the night worrying about so many things. I don't

how I'm going to take the boys into the city today, but I am. Life goes


I wanted to take a moment to reflect on the good things that happened


We got to spend another 15 minutes with Ali and Laura after Ali's

infusion and before they went home. They made it home safely. As did

Savannah and her mom.

We met another patient of Dr. Asthagiri's, Vaughn, all the way from

Oregon. Vaughn and I have talked before on Facebook. I thought we had

missed him. I'm glad we didn't. He was laid back, positive and so

happy to meet Jacob. We talked with him and his friend and hope to have

more time with them next time. Vaughn, please send me a copy of the

picture you took with Jacob. Vaughn is so tall, he makes Jacob look

short :) Jacob thought he was "really cool."

I had a moment with our research nurse that was nice. TD called while I

was signing papers. As his picture came up she asked to see it. We went

to talking about how much Gavin looks like him and I showed her pictures

of Brie. It's the little things.

Although Dr. Asthagiri brought us bad news, he also is giving us hope. I

adore this doctor. To watch him with Jacob and to see how comfortable

Jacob is with him means so much. They cracked jokes and laughed

yesterday. Jacob paid attention and asked questions. I can tell that Dr

A really cares about Jacob. Jacob hugged him when we left. Not to

mention, like Dr Smith (Jacob's other doctor I adore), Dr A kindly puts

up with me. Not an easy task.

Did I mention how great Gavin was for the four hours we were in clinic?

Not one difficult moment.

Dr. Kebebew's news was upsetting as well. I know, without a doubt, that

bringing Jacob to him for this surgery was the best choice we could've

made. Jacob is getting the very best doctor in his field. The best of

the best.

Jacob's pre op was stressful, but I can smile about Dr. K giving Gavin

daps and knowing about the secret explosion at the end. I can tell you I

feel safe giving my child over to this doctor to remove this nasty

tumor. Dr. K's surgical fellow is from Talkahassee, accent and all. She

is a typical beautiful Florida girl who I know without a doubt took

special interest in Jacob. Jacob made me laugh... he named his adrenal

gland tumor Franklin. He was cracking jokes that Franklin's cousin has

moved in. His name is Fred and their last names are also Grimes. Jacob

got excited about having a morphine button. Who wouldn't be! Jacob sat

and talked with this fellow from Talkahassee about hunting and high

school sport coaches and all the things he loves about home (I can't

wait to get home. I'm missing you this morning, TD. I need you to hold


Our walk to the CVS wasn't fun. The weather was yucky, Jacob's left leg

hurt, we kept having to cross the six lane road because the sidewalks

are under construction. But Jacob and I got to talk. He told me all

about Savannah, who I really didn't get to spend much time with and have

never met before. We walked by the Double Tree hotel that during our

first visit here we went to a fancy dinner there with the families at

the Inn. Jacob didn't like the food so he had chicken fingers and Gavin

ate baby food. He was only 7 months. It feels like yesterday. It was one

of our first times witnessing the kindness of the people here at NIH.

We met a family from Jacksonville, Florida. A country family who heard

Jacob talking about getting his first deer. Dressed in a camo shirt,

which, Jacob will tell you, you just don't see up here, the dad told us

about the deer, doe and buck, living behind the inn. Him and his son

have been feeding them apples. I hope Jacob gets to see them.

I enjoyed watching Jacob play pool yesterday evening. Gavin and I tried

to play video games but after 3 trips to the office, it didn't work out.

It's fun for him to just run the halls.

I sat last night and read emails and Facebook messages from my online

family and our family at home. We may be traveling through rough waters,

and what Jacob has ahead us terrifying to me, but I know I'm not alone.

That is something to feel good about.

As I'm typing this I can hear the thunder crashing outside. The boys are

snoring away and I ignored a call from NIH that anesthesia wants to see

Jacob today at 2:00 pm.

Guess our plans will be once again changing.

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