Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Thursday, June 23, 2011

See You Later Sam & RW!

Today we had to say 'Good Bye' to Sam and RW as they were heading off the mountain towards Denver a Day earlier then planned due to RW feeling pretty badly. The hope is that it was mostly high altitude related so he would start feeling better once getting to a lower altitude.
Sam made a point of us not saying 'Good Bye' but instead saying 'See You later' or 'See You Soon'. I prefer that as well as it leaves the door open for us to see each other again.

What a treasure it was having them both here. Our boys just adore them and they will cherish the memories from this trip and past visits of making meatballs with Auntie Sam and playing and reading with Uncle Ron.

Tonight my post will be a question to some of you and something I hope to think about. RW was given 6 months to live with no treatments or 1 1/2 years to 2 years with treatment. He has Stage 4 Lung Cancer in both Lungs that also caused a huge tumor in his hip. He has undergone intense Radiation and Chemo Therapy and it has been a painful journey.
I asked myself many times if I would prefer a fast and sudden death or have a timeline given for my passing ...
Before we had kids I would have picket the fast and sudden death given a choice but now that I have kids I admit I would prefer a timeline. I figure when given a time you have a chance to get your papers in order, prepare some memories for your children (Videos & Letters) and then try and work on your Bucket List. This brings me to another crossroad. Having kids your job is to fight to the bitter end and try to hold on but if I had no kids would I go and pick the 6 months and live it as full as I could before the pain set in or would I choose the painful treatments knowing that I might still be not getting past 1 1/2 years or 2 year mark?

Now being the family member I know I would say to everyone I love, and would not want to loose, that of course they have to fight with all their might. To not give in and always hope for the tide to turn and maybe a miracle to happen.

This is why I cherish the fight RW is fighting and the strength Sam is trying to hold onto helping him along as best as she can.
Seeing RW for the first time since he started treatments it did take us back seeing him at first, for exactly 3 minutes. He looked much skinnier, had lost all his hair and was very tired the whole time here BUT the most important part for us to see was that he was still there!!! His eyes were the same and he still joked and was the RW we know and love.
So this is what the last four days taught me. If you have some family member in your life battling cancer or another disease that has no cure then PLEASE reach out and see them and spend time with them. The disease might be horrible but the person you love is still there and the spirit can not be taken away. So instead of choosing time away from them, choose spending time with them! This is not at all about us or you but about showing they matter an they are a priority in our life! When you see them don't act like the Cancer is this big Elephant in the room that no one wants to talk about ... no by talking about it you take it's power away.
Our life's are all very busy and many might rather go on a vacation then visit a sick relative but trust me you will regret missing this time. Vacations come and go but time spend with those you love is on a timeline and the time might run out faster then you think.

THANK YOU Sam & RW for spending time with us and we are counting on seeing you again come August or September.








Love,

R A C A

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