Skip to main content

Happy Moments Roll

Today has been a day of creation.  I have realized that we can't just assume the happy moments are going to happen on their own.  Not when we are waiting for life changing news.  We can sit around and get discouraged with the fact that we are worried and tired and losing our ever loving minds, or we can create our own happy moments.

So...that is what we have attempted to do.  It's not to say some angst and nail biting moments of spine tingling grief didn't have its place as well.  I had plenty of work to do and a big presentation so while I worked my fingers to the bone, the kids went into town to try out the Popeye's chicken and show Little Bear Hobby Lobby.  Spencer kept me updated with his hilarious commentary of the day on Snapchat.   He's a good sport to accompany three girls to a craft store! (Shelbie took her friend).  Poor Sam missed out on all the fun since he was in school.

This evening, we said goodbye to Spencer, had a good cry in my favorite crying spot, my closet, then decided to hit up the roller rink.   Shelbie, sadly, had other FHE plans at her friend's apartment.  Sam and Little Bear and I went.  I seriously considered bowing out because I haven't roller skated in 40 years and I'm old and every joint in my body is currently swollen and inflamed.  But...tonight was about creating fun so I put my big girl skates on and away we went.

Sam goes skating a lot.  I would say he has successfully channeled his inner 70's nerd when he is out there.  He's the hot shot skating backwards, crossing his legs, weaving in and out.   I was not a hot shot but I could hold my own at least.  I have to say, I sort of had a good time.  It was fun to watch Sam.

All in all...we survived today.  A day without any news to speak of.  Even our local oncologist didn't bother to call even though they have had the referral since Thursday.  In contrast, I made one phone call and sent one email and received a reply within a couple of hours.  I called our team of researchers at the National Institute of Health in Bethesda.  Due to the storm out there, only two people made it to work in the Hematology department.  He took my message and sent an email to the person I needed.  He thought her email at home might have been down so I didn't hear back but at least contact was made and the man was as helpful as he could be.

The email I sent was to our favorite Dr. Shimamura whom we saw at Seattle Children's but moved last Fall to Boston Children's.  I didn't have any of her contact information but the Boston Children's website has an option to send an email attachment right from the website.  Within 2 hours, Dr. S emailed me back.  All she said in return, to my explanation of what we were facing, was, "I"m so sorry! Can you please send me your number so I can talk to you in person?"I'm hoping she has some insight for us and guidance in case we are dealing with cancer.   DC kids can not usually tolerate the typical chemo drugs.  They have to have a reduced intensity to protect their other fragile organs.

It bugs me that a local doctor can't get back to me in three business days but a world renowned Hematologist who is head of Hematology at a major medical institution can get back to me in less than two hours.

Anyways, that is where we are at with things.  Still in limbo but the happy moments roll by and we hold on to those for as long as we can.  i'm in the last few days of my 29 gifts project.  I will post the updates on that tomorrow.  The one gift I have been waiting 25 days to do is happening tomorrow!   Stay tuned.



Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.


Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…