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A Restful New Year

Posted Jan 10 2013 11:31pm

Happy New Year to you all! I hope you are doing well. We thoroughly enjoyed the break from school over Christmas, with lots and lots of unscheduled fun together.  It was nice.  I find that I appreciate quiet family time so much more these days.

The boys are doing well.  Garrett is enjoying kindergarten and the new friends he has made.  It's been fun watching him blossom.  He's a homebody at heart and has thoroughly enjoyed the break from baseball practice and games.  Seasons at his age are not intense and Garrett enjoys playing.  But he loves time to just hang out at home.  I have been protective with after school activities.  Garrett gets bummed out if we have much of anything planned after school, so I try to respect that.  All day kindergarten is tiring for small children.  Perhaps all the rushing around with Gavin's treatment and subsequent therapy and appointments made Garrett appreciate just being at home.  I can't say that I blame him.  I've gotten that way myself.  The boys will be young and wanting to hang out with us at home for only so long.  We must soak that up while we can.

Gavin is trucking along in first grade.  He is flourishing at so many levels, which amazes me when I stop to think about what his sweet little brain has been through.  He works hard (most of the time) with his schoolwork and has a fabulous group of teachers and therapists at school that help him succeed.  He puts in a decent amount of effort at home as well to keep up with it all, but really doesn't complain when "the homework factory" gets fired up each afternoon.  I try to keep it fun.

Gavin has gained a little weight, which made his endocrinologist very happy.  I'm not sure I blogged about this, but at our endocrinology appointment in August, Gavin's doctor was far from thrilled with the lack of weight gain in Gavin since the previous appointment.  He spoke very frankly about the possibility of putting a feeding tube in if Gavin didn't start gaining weight.  Gavin takes human growth hormone shots six nights a week because the part of the brain that tells your body to grow was damaged with his cancer treatment.  The growth hormone shots have been working well, but won't continue to if he doesn't gain weight.  Getting Gavin to eat enough is no small feat.  His appetite is just not all that great (never has been since cancer) and he'd rather eat vegetables and things that just don't pack a lot of calories.  ;)  Gavin is at a time in a boy's life (pre-puberty) that he's naturally not all that hungry.  So trying to get him to eat a lot right now is like rowing upstream.  But, we've worked so hard at it and have supplemented twice daily to get in extra calories and it has finally paid off some.  His doctor wants him to gain about a pound a month for awhile.  Hopefully we can keep it up.

Gavin's vision has been great!  It appears that his surgeries over the summer and fall were successful.  We go back again in the next month or so to see the ophthalmologist.  If his reading progress is any indication, I'd say his eyes are in great shape.

Gavin is due for another routine MRI in February.  Jeff and I were just talking about that the other night.  I mentioned that it was the first MRI that I felt kind of crept up on us.  Usually, I am very much aware of when Gavin is due for another MRI.  It's hard to explain, but I'd say there's something deep within me that desperately needs to know he has another clear MRI under his belt.  It's not necessarily worry, but just a desire to know things still look alright.  There's a difference, right? 

Over 3 and 1/2 years after treatment ended, I am finally getting to the point where MRI dates creep up on me.  I'm sure to some that sounds a little nutty.  Pediatric cancer just does a number on you and it takes a long time to get back to somewhat of a feeling of rest with it all.  I have read recently about post-traumatic stress disorder in parents of kids with cancer and it made such sense to me.  It's just such a shock at so many levels.  But, I do feel greater peace these days.  Don't get me wrong, I am still regularly reminded of the price Gavin paid to get to where he is today.  Surviving AT/RT doesn't come without long-term side effects.  However, I have asked Jesus to grant me peace about it and I'm so grateful for His mercy on our family. 

I belong to a Facebook group that is specifically for parents with Gavin's type of tumor.  The prognosis for AT/RT hasn't improved much since Gavin was diagnosed in 2008.  With the lack of funding given to pediatric cancer research in general, it's really not surprising.  Just sad.  Too many children die entirely too often from AT/RT.  I am frequently reminded just how blessed Gavin is to be here. I pray that Gavin continues to live a life without cancer and provide hope to the many families that are diagnosed with AT/RT.  I remember how scary it was in the early days and how I would have given anything to see a kid like Gavin, thriving nearly 5 years after diagnosis.  That's one of the main reasons I remain active in the AT/RT Facebook group.

Thank you all for checking in on our family.  I pray that you are blessed because of the love and prayers you have offered us over the years.  I'll try to not be such a stranger in 2013. 

Much love,
 
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