Getting this out so I can REALLY write.

I wrote this a few weeks back and didn’t feel like finishing/posting it.  Here it is, for posterity.  I think I wrote it the weekend of June 19/20.

I’ve been sitting here, debating about writing.  I usually have Sarah McLachlan on constant play, during the nighttime.  Angel is now playing.  Right now my Angel Arms are my fellow Childhood Cancer families.  A couple Dads, but mainly the Moms.  I’ve had several conversations on this topic.  There is just something about the female DNA that causes us to reach out, share, comfort, validate and just plain commune.  If it wasn’t for my fellow Momcologists I have no idea where my head and heart would be.  Every last one of you, no matter where you are at with this beast.  YOU are my lifeline, my phone a friend, my 50/50.  So glad to be here with you all. 

A few things:  When we arrived in Seattle last week?  Monday we had to report to clinic at 10:00.  On the way to clinic a guy pulled up next to us, motioned for me to roll down my window.  He informed me that I had a flat tire!  I made it up the hill and to the closest gas station.  We weren’t very far from clinic, at that point.  If I had called AAA at that point, we would have been late for the day.  I filled up the tire with air and drove to clinic on hopes and wishes.  We made it, with air to spare.  After our day was done, I called AAA.  One of the sweetest “retirement age” man showed up.  He was one of those stereotypical Grandpa types.  Gregory was absolutely fascinated.  The AAA guy showed up in a little pick-up with a cover over the bed.  He lifted the cover and it was filled with all kinds of tools and equipment.  Gregory is FASCINATED with the mechanics of stuff and TOOLS.  The AAA guy proceeded to lift the car, take off the wheel………  Meanwhile I talked Gregory through every step.  Come to find out, something had punctured the tire and fallen out.  Mr AAA happily offered to plug the hole.  It was a stressful event in the morning that turned out to be a lot of fun for Gregory with a very happy ending for the tire and our pocket book.

We left Seattle at 5:00, Friday evening and drove across the state and into Idaho.  It was kind of a strange drive home.  Gregory fell asleep right away, the first couple of hours were very quiet and it allowed me to digest the weeks events and chew on the results we had received, just hours before.  Gregory was still tired and as we neared the 2/3 point of the trip, it was starting to get dark and he wanted to fall asleep.  Except he got really scared.  Of what I’m not sure.  He has been progressively scared of the dark.  Not quite sure where this is coming from, but I have a feeling it has something to do with his sense of security and everything he’s been through.  We hit the Water Retreat at precisely 11:00 that night.

I really don’t remember Saturday or Sunday.  We spent most of the time just hanging out and rebuilding our reserves. 

Monday we had clinic with our HomeHome doc.  It was mostly uneventful.  Except for Gregory hematocrit.  Just the week before his crit was 37.  Seven days later it was 29.  It could have been a fluke draw, so we re-drew it.  Nope.  It was 30.  So doc had us come in Thursday for a re-draw.  Thursday’s crit was 31.  Which is not much higher, but higher is so much better than lower.  I  don’t have an explanation for it.  I  have a feeling it’s GVH related, though.  The previous week was crazy on his system.  After clinic we went to ShopKo to pick out his new eye glasses.  Good gravy, this child of mine.  I let him look through and try on all the glasses he wanted.  This is HIS choice.  He is the one who has to be Ok with wearing them, so I let him take the lead.  Without ANY input from me.  You know that saying:  The fruit doesn’t fall far from the tree?  Well, this precious child of mine selected the cutest pair of RED Stainless Steel frames.  OMG!  The temples have a faceted look to them, so they kind of sparkle.  I cannot wait for them to arrive.  He looks so stinkin’ cute in them.  He is also very proud of them and anxious to receive them.

Tuesday we had his panoramic x-ray for his teeth.  It’s not a typical part of his care, but I really wanted to know where we were at with his teeth.  The good news is that he has all of his adult teeth.  The development is delayed.  This we expected.  Now it’s just a matter of monitoring them and seeing what the next several years will bring.  There is no guarantee that they will develop properly, let alone develop at all.  The only thing we can do is wait and see.  Despite the fact that there is absolutely NOTHING that can be done for his teeth, at this point, I REALLY  NEEDED to know what was going on behind those gums.  Knowing what’s behind there doesn’t change anything, but it stops the questions in my brain.  The wondering.  I know I’ve mentioned this before……  I LOVE our pediatric dentist.  It used to be strange, in the beginning.  Dr C and I went to the same high school.  His dad was my dentist.  The care that he has given Gregory has just been so outstanding.  Everyone at Children’s Choice is top notch.  Thank you, guys!!!  

On the way back to the water, we picked up AnnMarie.  She spent Tuesday, Wednesday and Thursday night with us.  It was very busy, she and Gregory had a ball together.  Gregory played hard, laughed and ran around.  I really enjoyed having her with us, too.  Although, this place is so stinkin’ small.  Cannot wait to get HomeHome.  We dropped AnnMarie off with Mom and Dad on Friday.  We met at Albertson’s and decided to make a spontaneous trip to my favorite ice cream shop, The Scoop.  Gregory hasn’t had hand-scooped ice cream since before transplant.  The Scoop is in a really pretty neighborhood and we sat outside, ate ice cream and listen to some live music.  Meanwhile Curtis and AnnMarie chatted it up with anyone who even glanced their way.  After being away from them for so long, I’ve forgotten so much.  While we had a good time, it was so stimulating.  I felt like I had a permanent “Deer in the headlights” expression.  Trying to look out for Gregory, try to keep Curtis within his bubble and AnnMarie’s constant chatter.  I used to be able to juggle it, or at least I was comfortable with ignoring a large portion of it.  It is going to take some practice to get back into the swing of things.  

I know I mentioned school for Gregory.  So.  Our kids are receiving a Montessori education.  Montessori is divided into three year age groups.  Gregory should have started his 3-6 years in the ’09-’10 school year.  This next year would have been his second year, instead it will be his first.  Academically I think he is up to speed.  Socially is another thing.  I also have no idea how many days a week he is going to be able to attend school.  We are planning on five days a week and mornings only.  We will see what happens.  He really needs the peer interaction.  I am so used to his vocabulary.  Today he said something to Nana and it blew her out of the water.  Gregory’s vocabulary is VERY advanced.  Always has been, but when you are four and spend ALL of your time with adults, what else can be expected.  We have yet to register him.  Summer time is a very difficult time to register for the next academic year.  It will all work out, though.

He has labs only, on Monday.  Thursday is his FIFTH birthday.  The following Thursday is his surgery.  They will be taking out his Hickman Catheter and placing a port.  They will also be changing out his G-Tube.  July 1 can’t come quick enough.  With his elevated level of activity this week, his G-Tube has been really giving him grief.  So bad that on the way out of the grocery store, tonight, he stopped mid stride and doubled over in pain.  I picked him up and he twisted his tube around and continued on.  He’s a little resilient.   


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in bone marrow tranplant, Childhood Cancer, year 2. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s