Sunday, April 6, 2014

What a fun weekend!

Sunday night already... the weekend flew by!  I actually had to check to see what my last blog post was to see what I needed to update on.  I saw that my last post was Owen's WADA test.  I had said that I canceled my appointment with my neuro oncologist for Thursday because Jamie couldn't come with me and I was pretty emotionally drained.  They ended up having an appointment for later in the afternoon with my doctor and Jamie WAS able to make it to that one so we went.  We met with my doctor Thursday afternoon and talked through my tumor, my second opinion and treatment plans.  It was decided that I would do Temodar, which is the oral chemo.  I will most likely start after my MRI on April 16th and will continue the chemo for one or two years.  Praying that my body tolerates the chemo okay and praying even harder that it keeps my tumor from growing for a really long time!  Although it's so weird to know that I will be starting chemo, I am ready.  I want to hit this tumor with everything we can!  If you are not familiar with Temodar, it's an oral chemo that I just take at home.  Generally you have 28 day cycles on it, you take a pill for the first 5 nights of the cycle before you go to bed and then you do nothing for the next 23 days.  I will repeat that cycle 12 to 24 times.  I will have to go in for weekly blood draws to make sure my body is handling everything okay but this chemo should be much easier to handle than some of the others.  Generally it doesn't cause hair loss either so hopefully my hair will start growing back so I don't have to sport the mullet for the rest of my life.  :)  Gosh, it's still doesn't seem real that this is happening to me, even though I have completed 6 weeks of radiation, lost almost all my hair, had countless doctor's appointments, MRIs, etc sometimes I still feel like this is just a weird dream.  
Last week was definitely rough though.  I was REALLY emotional all week.  I think it was the combination of having so much going on last week and I was REALLY tired.  Sleep makes such a difference for me.  When I am tired I am EMOTIONAL but give me one nights good rest and a good nap and it's like I am a new person!  Poor Jamie saw a lot of me crying with no explanation.  I was too tired to even explain or talk about why I was crying, half of the time I didn't even really know a specific reason for crying.  Friday was really the turning point for me though.  My sister in law Niki came over to watch Owen and Jacob while we went into Owen's school for next year to go over his IEP.  His current team of therapists did such an amazing job outlining Owen's strengths and weaknesses.  They even video taped Owen at his 4K program and sent those clips over to his school for next year so they could actually see him in action.  I won't get into all the specifics but I am really excited about all the great things that will be in place for Owen as he enters kindergarten.  I am heart broken to leave his current team but I know the everyone at his new school next year will be amazing and will be there every step of the way to help Owen succeed.  I can't wait to get to know them all better and have so many new amazing people in our lives.  We have spent the last 5 years pushing Owen so that when he entered school he would be just one of the kids and this is exactly what he will be!!  He will have some adaptations and lots of extra help for sure but he will fit right in!  Thinking back to when he was just a teeny tiny preemie and hearing the news of his brain bleed and having the doctors tell us that they weren't sure what his quality of life would be and now seeing him now, it's truly a miracle.  He has been such an inspiration to us as we watched him overcome obstacles and achieve milestones.  I can't wait to see what great stuff he has in store for us as he enters school!  The thought of what he has ahead of him, all the great stuff.... washed away all the crappiness and stress of the week and I went into the weekend happy!  
Since my sister in law Niki was already at our house, we had her husband (jamie's brother) and their twins come over for dinner.  It was a nice relaxing Friday night at our house.  The twins are about a year older than Jacob so the three of them had a blast playing together.  Owen got to play video games.  He wasn't supposed to be running or jumping still and he got the new Lego movie video game as a reward for being so brave at the hospital on Wednesday so he didn't care at all that he didn't have any buddies to play with.  He was happy playing the PlayStation with dad.  :)
Sam and Jacob playing with the "choo choos"

 The three amigos.
This weekend was SO nice.  The weather was AMAZING!!! You forget how amazing it is to play outside ALL day.  Every spring when we first get back outside I wonder "how did we make it through the winter being cooped up all day?"

All Owen wanted to do was get his bike out and go for a bike ride.  Mr. Jacob is WAY too cool for a stroller but luckily he LOVES riding Owen's old tricycle that I can push with the handle.  Although Jacob is too cool for a stroller and has to do EVERYTHING just like Owen I find it funny that he still insists on bringing his blankie everywhere with him.  Notice the white blankie in the front basket of Mr. Tough Guy's bike.  :)
Owen was given his bike last summer from the Variety Group and Emery's.  We can't thank them enough.  They provide special adaptive bikes for kids in the area.  This bike is Owen's absolute favorite thing to do in the summer and seeing how proud he is riding it makes me smile!

We rode the bikes to the park by our house.  The boys were so cute together and actually interacted a little bit and acknowledged each other without fighting!  It was so fun to watch the two of them together.  Jamie spotted us on the way home from the grocery store and stopped to say hi.

My two little blondies.  :) 

Love this photo, Jamie making some adjustments to Jacob's bike, Owen waiting patiently, Jacob standing there with his helmet and sippy cup watching daddy.

Owen is the ultimate helper for Jamie, he helps him cook, anytime anything is broke Owen helps fix it and Owen is always following Jamie and helping him to yard work.  Looks like Jacob will be helper #2.  I couldn't even take the cuteness as these two bopped around the yard in the Gator picking up sticks and then Owen pulled up next the fire pit and was showing Jacob how they needed to throw all the sticks in.  He even showed Jacob how to break the larger sticks on his knee before throwing them in.  Just listening to Owen talk to Jacob and tell him nicely what to do... made me day!

 Jacob still has lots of learning to do!
He needs to learn how to steer the tractors.  We had to pull him out of the brush a few times today. 

 He still needs a little work on
how to hold a baseball bat too.
 It was all in all a really great weekend.  We have NO doctors appointments this week!  Yippee!  It's supposed to be warmer out all week too.  It's going to be a good week, I can just feel it!
I will leave you with a few more photos of the boys enjoying the nice weather!  

Hope everyone had a great weekend!  


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