Wednesday, August 21, 2013

Shaken, stirred, upside down, kind of like a tornado.



I thought that after a year of this I would have it together! NOPE! I was wrong, I have learned so many things along the way, I have learned so many medical things, having hope, meet new moms facing the same thing I am. I thought we would return to a some what normal. NOPE! Our world continues to be shaken, dumped upside down, and just as we think we may have it together again, it is gets shaken and stirred again. Just when we think that things could start getting back to a new normal, things are changed once again. It is like I am stuck in a tornado, and no matter how hard I want out, I know I have to ride out the storm.  We learned Carson has restless leg syndrome and will need more medication, yay for answers, but the medication has many side effects itself, and can suppress his breathing. This is worrisome for the fact he already doesn't have a "normal" airway. I am finding along this long road, that nothing will be normal ever again. Cancer has taken my sense of security for my children. I worked so hard to build a life that I was proud of. I worked to have a house, cars, and pay my bills on time. I made my house a home, filling it with lots of love and a place that we can always feel safe. Now even at times our home doesn't feel safe. I am always feeling like there is something, someone watching us, and there is, GERMS. The smallest germs can take us and shake it all upside down once again. So with the constant worry of germs and cleaning and trying to make sure our home is a safe place, it builds. I am not sure most family or friends know how much goes into each day of my day. The cleaning, the financials,  the medications, the worrying, the taking his temp 5 times in a day and even more if he even looks like he is pale, red, or just off. Always wondering when we go to the doctors if they will say the dreaded "C" word has returned. It is reality for me. Day in day out, it feel like I am holding on to dear life with out ever knowing when it will be shaken, stirred, or turned upside down.

Update on Tuff Boy!

We went to Lagoon! What an awesome time we had! We loved every minute of it! The kids enjoyed it and so did I! 

Playing like they were in jail! :) 


We did hair cuts! Much needed hair cuts! Thanks to our Chemo Angel for the gift card! 

 The crappy medical stuff. We did a sleep study to know more about Carson's airway. I don't know that you can call it a sleep study, because we both did not do much sleeping. First off they hooked him up to all these electrode things and then told me he wasn't able to get up to go to the bathroom! Umm would have helped if they told me that before hand! Then when we turned off the lights the room was creepy. There were shadows everywhere. It took Carson forever to fall sleep. Then they woke us up at 5:30AM! WHAT We just went to sleep 5 hours ago. Insert #&#&#&^ and eye roll here!
We then headed on Wednesday for Chemo. Oh boy it was a rough day. He was not happy about going to the "long hospital" as he says. But was excited to see him Uncle Cole who was at the U of U for staph infection. We visited uncle Cole and he made sure to tell him to Cowboy Up! :) 
This started our 5 day steroid pulse! Oh help us now! Those have to be the WORSE thing of chemo! 

We had many melt downs, some over nothing, some over food, some over Blake looking at him. 

We had  a big rain storm, I was nervous to let them play in the water, but sometimes you have to live a little. 


We have the results from his sleep study... not the best, but not bad at all! He will be on Oxygen at night to sleep, and will increase his nerve medication to almost triple. He kicks his legs all night long making it hard for him to enter the REM cycle of sleep. I am sure the results would have been different if they would have let us SLEEP instead of hooking him up to 50 wires and kicking us out at 5AM! 




2 comments:

  1. Sara,

    I never knew the particulars of cancer until 2010 when my sister was diagnosed. I mean, I knew it was an awful disease and that it hurt families but I had no idea about the daily worry and the necessary obsessiveness about germs, cleanliness and health. A little cough is nothing to the average person but to someone with cancer it can mean major illness and hospitalization. My sister was 25 years old when she was diagnosed and my mom has said many times that it's turned her life upside down as the mom. I've seen my own mom struggle with keeping things together in the face of this horrible game-changer. I just want to reach out and hug you (and so does my mom) because of what you have to live with every day with your young child. Having two children Carson's age I can't imagine what life is like for you. This is especially true after seeing the life of a "cancer mom" that my mom has had to adjust to post-dx. My heart goes out to all of you, and this is why I do what I do as a Chemo Angel. Each and every cancer family I have contact is special to me and yet also takes a little piece of my heart with them. No family should ever have to go through this but I truly admire the way you live your life with love, joy and positivity. Your family is beautiful and I am so very blessed to have been matched with your lovely hearts.

    With love,

    Chemo Angel Sarah ♥

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    1. Sarah, you are so sweet! It is a game changer and before may of 2010 i didn't realize how much it was. I never understood it! I know you are Carson's angel, but you have been an angel to our entire family! You really help us through hard times, with just little up lifts. I really need to take a video of how excited my boys are when they get a package! It makes the not so good day, a better day! We love you and are blessed to have you along our journey.

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