Thursday, March 31, 2016

Heart Full

I've been trying not to whine today.  The struggle is real!  Just kidding.  Today hasn't been the worst day ever.  I've tried to invent some needs in people so I could do something beyond my own little world of hurt. It helps.

Let's see...a quick update.  Shelbie has been up and around some today!  Hooray for that!   She is still dealing with pain and itchy hives but she had a productive day. She is able to walk better. Emotionally, we are exhausted and our nerves are slightly frayed and it shows just a bit.  We try to keep the crazy tucked in but sometimes, it shows.  It takes a great deal of effort to pull it all back together.

She is experiencing some new pain in her legs and hands.  This is where it gets hard.  How do I know when I need to take her in, at least for symptom relief?  How will I know if this is just some passing thing or the disease advancing and worsening?  I feel like we have a bomb strapped to our chest.  It's feeling rather crazy.

Sam is doing better.

Spencer is not really doing much better.  He's working but sounds wretched and doesn't feel so hot either.  Another round of antibiotics is shredding the poor kid's gut.

The plan remains...a loose one.  Dr. Gundlapalli had given me his cell phone number so I could text him whenever I wanted.  He did instruct me to text him this morning so I did.  I wasn't exactly sure what I was suppose to say but low and behold, he texted me right back!  I couldn't believe it.  He reported that he has been working on her case since he saw us last week.  An hour later, I got a call from his nurse and got our next appointment scheduled at Huntsman in just over 2 weeks.  We will meet with our Oncologist and Dr. Gundlapalli.

At 8:00pm, I got a call from Dr. G.  He said, "I wanted to see how OUR girl was doing?"

Seriously?  This guy is working out of three different hospitals, has 3 medical degrees and a PhD and he is calling me at 8pm after what I'm sure was a long and busy day with sick people.   I've never known anyone like this.

He also had to let me know that our insurance denied the new plasma treatment.  Of course they did.  It's never going to be easy.  He said he is trying some other avenues and he thinks he has it worked out.  He said, "I want you to know that I am not treating  your daughter like a scientific experiment.  I am truly trying to help her.  I don't know that what I am suggesting is going to work.  I'm fearful it won't but I feel like we have to try, at least try to give her some quality to her life."

I replied that I trust him and believe that we need to try his suggestions as well and already, he has done more for us than anyone else around here has.
He said, "Oh, I am so humbled that you trust me.  I feel like it is my calling to help you; stay with  you on this journey."

Our interaction reminded me of how blessed we are.

I have seen so many great blessings the past few days.  I live in a community full of loving people.  Monday night, we spent two hours in a drive thru line at McDonalds.  They owner was donating all the profits for the day to help a family who was in a tragic car accident and the mother died.  She left behind her frail husband and special needs son.  I got a little emotional seeing the throngs of people who turned out to donate money.  They raised thousands and thousands of dollars.

Tuesday, I had to meet with a client I've been working with for a few months on various development projects and house plans. He is one of the area's most affluent people.  I love working with him because he's just straightforward and honest and he respects my talent and skills as a space planner.  We've done several spec homes together.   At the end of our meeting, he said, "This thing with your daughter, it's hard isn't it? You are struggling."
"Yes. It's the hardest thing I've ever done in my life.  Yes, I'm struggling."
With tears in his eyes, he said, "I feel like I want to help you pay for all her medical bills.  I can give you any amount of money you need so you don't have to worry."

I was so humbled by his concern and offer.  I refused his offer though.  Just the fact that he has trusted me with his projects and provides me with work is blessing enough.  It's just nice to know that people care.  Near strangers even! I was raised to be self sufficient and work hard and I try my hardest to live my life so I can support the kids and I.

Today, I had to meet with the Chief Officer of Operations at the hospital to go over some final furniture plans for the remodel I've been doing.  She has been so kind and when we were transported to Huntsman, called down to the COO of Huntsman to let him know her 'family' member was coming.  He actually came to see us last Wednesday.  He left me his number and told me that I could call him if we needed anything at all.  Again, she offered her help in our situation.  She has been so compassionate and caring.

It's amazing the kindness I have felt from people who hardly know me.  So...my heart is full this week as I see good in the world.

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1 comment:

  1. Again, Kathy, thank you for a glimpse into your precious lives--the agonies and the ecstasies!

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