Saturday, September 24, 2011

My Cancer Update

It's MD Anderson time.  I've been in Houston for the past several days and things have gone well.  I love the talented folks here at MDA.  I love the fact that every worker is so friendly and nice.  They all seem to like their jobs.  I especially love that they always get me on the first stick.   Whew!

All the tests went well and the results are good.  I'm still in remission.  Whewhoo! 

I was hoping to be moved to an annual checkup schedule, but unfortunately that was a definite no.  I have a few new spots that will need to be followed, but nothing major.  Just tiny spots.  I'll need to stay on the 6-month schedule.  But, at least I'm still in remission.  :)

Wednesday, September 21, 2011

Clay in His Hands

Jenny Jordan Frogley wrote a beautiful song, "Clay in His Hands", which was inspired by an article in the New Era magazine in December of 1999. The article was titled, "In the Potter's Hands" and was written by Larry A. Hiller.  I was listening to this beautiful song performed by Jessie Clark.

I won't quote you all the words, but the chorus says:

We are clay in His hands
Centered on the wheel
As the wheel spins the potter molds
Creating something beautiful.

Can you picture it?  A master artist sitting at His wheel spinning a beautiful work of art?  I remember once watching someone create a beautiful vase.  They started with a brick of clay.  After wetting it some, they formed a ball and sat it on the center of their wheel.  In what seemed like no time, and with seemingly no effort, with just the use of their hands, they shaped a beautiful curvaceous vase.

It's really a beautiful analogy isn't it?

Well, on this particular day, in my mind, I felt that as I watched the Master spinning my particular vase the walls had become so weak that the vase was crumbling.  In my mind's eye I could really see the vase folding in on itself and finally the Master just putting the clay back into the shape of a ball and saying, "Let's start over."

Do you think that's how it works?  At first I thought, what an awful image to have during such a beautiful song.  A song that is meant to inspire and I was having an image like that?  But, isn't that what the Atonement really is ... the starting over? 

I was feeling weak from months of struggling, a tough doctor's appointment with Ryan, feelings of being overwhelmed with every day tasks, and the dread of the upcoming tests at MD Anderson. 

I think too often we think of the Atonement as something we use when we do something wrong.  But, it's also something to be used on a daily basis to strengthen us, to succor us, to help us to be better than we could be on our own.  After all, He experienced all things so that He would know how to succor us in our time of need.  Why not let Him help us?

This morning I was thrilled to find this beautiful video on YouTube to share with you so that you can enjoy the beauty of the words of the song and the creator of the video did a beautiful job on the images as well.  I hope you'll take a few minutes to watch the video and enjoy it's message.

Tuesday, September 20, 2011

Medical Update on Ryan

Today Ryan and I went to see his Genetic Metabolic Specialist in Austin.  I really appreciate this doctor.  He's amazing.  He's like a walking computer database, and he gives lots and lots of information, which I love.

We were there for a special visit, not just a follow up.  At the end of June, Ryan started having seizures that lasted longer than 30 seconds and where he quit breathing for 6-12 seconds every time.  He was having a couple of these each day.  One particular seizure seemed to last from start to finish for probably about 2 hours.  Since that time, he has lost a lot of his skills.  He no longer can hold his head up.  He can't prop sit. He has lost most of his signs ... probably due to the lack of mobility in his arms.  He has also lost his words:  no, mom, and up.  Additionally, he was eating 4-5 jars of stage 2 baby food by mouth during the day and only being fed by his g-tube at night.  Now, he won't eat anything by mouth.  If we get 3-4 bites in during each meal, it is because we have coaxed each of those bites.  He might drink a half ounce of a bottle, but he struggles with it.  At first, we thought the loss of skills might come back, but it's been almost 3 months and he's not regaining his skills.

Before his progress was definitely slow, but he was always making progress.  This change, the sudden increase in seizures followed by the loss of skills, means that a lot of the diseases we had taken off the list of possibilities are now back on the table.  None of them are great options.  We'll be doing testing for several direct diseases.  The orders are:

VLCFA, Lysosomals esp Krabbe re regression; TTP. PPT enzyme testing for Neuronal ceroid lipofuscinosistypes 1,2; DNA for Niemann-Pick C (type 1). Plasma and urine Cr/GAA.

Unfortunately, the lab was closed by the time they were able to get insurance authorization for all of those.  So, we'll get the work done on Monday and it will take 2-3 weeks to get the results back.  (Some of the tests have to be sent to different labs across the country.)  If all of the tests come back negative, then we will need to do an MRI to look at the mylethin sheathing and also do a muscle biopsy to consider mitochondrial disease.

He also recommended a repeat swallow study just to make sure Ryan's current refusal of food by mouth isn't for a medical reason.

So, we'll see what the tests say.  I haven't even researched any of the diseases.  It was enough that the doctor said "I'm sorry.  None of them are good options."  I guess I just don't have the energy right now to feel anxious about the possibilities.  Thus, I'll just pray and then wait until we have an actual answer.

Perhaps you'll pray too?