October 31, 2013

It's Halloween and all the kids are having fun and my poor buddy spent the first half of the day starving and thirsty, then had to be put to sleep to do a test, is currently in recovery and will spend the final hours of the day in a car just trying to get home.  Poor buddy.  Life is not fair!

October 29, 2013

We are doing cancer scans again.  We just sent Clayton back for a combo MRI, CT and bone marrows.  They gave him some versed before he went back and he silently let them wheel him away.  Moments after the large double doors closed though Geoerge and I could hear him screaming .  As a parent, every urge in your body is wanting to bust through the doors and throw everybody off of your child, scoop him up and run...just run.  However, the thing about cancer and special needs is you don't get to be a "normal" parent and you have to suppress so many of your parental/survival instincts and too often be a part of your child's pain or distress.  And for the times that you aren't a physical part of it, you have little choice, but to sit back and tell your emotional self that what you know is happening isn't, or that it will be over soon, or that you have to do this to them.  Anything to try and rationalize the screams and the pain and the fear you know your child is feeling.  

Once all of that passes, I'm secretly relieved when he is asleep.  I know that he is peacefully asleep and I get rare kid free time to just sit and think...before the fear of him waking up and being crazy or having problems recovering from anesthesia sets in...

October 15, 2013

The green monster is gone!  We cracked Clayton open like a peanut and said goodbye to the cast!  Poor thing, he was traumatized by us holding him down while the guy sawed the cast off, but then when Clayton realized we were taking the cast off he seemed like he didn't know whether to be mad or shocked.  (I don't usually get action shots during the times I am holding Clayton down, but it seems my mother was there to snap one.)

We made the three day trip and now it's done and over and he has another four months of healing ahead.  The doctor says it takes a good six months post op for everything to heal.  With the cast off, Clayton is still heavy, but he feels so much more petite at the same time.  It's weird...it has been more than four months since I have been able to hug my baby without a halo or a cast in the way.  The only complications we are having are the "pressure sore" from the cast, and Clayton trying to scratch at his healing scar.  Here are some pics, try not to be scared by his back.  It is that red because we had just taken off his cast and bandages so his skin was super irritated.  It looks much better now.  You can see the "pressure sore" from the cast though- notice its to the side of the actual incision.  You can also see the scar from the bone graft near his hip.  Clayton is not competely vertical in the photo, so it makes him look more crooked than he is.  

(I know pictures like this and others I've posted are hard to see, but I don't believe in looking the other way just because something is tough.  There are a lot of kids that go through this horror and they depend on us to help them.  Pretending these crappy situations don't exists doesn't help them.  So I post these things in hopes that people will realize what these kids go through and how badly they need their help.)

Poor thing.  They gave us some good cream to put on it so it will hopefully get better.  I wish I could say that was the end of the back stuff, but the doctor feels confident, we will need to do more in a few years.  Hopefully not until he is 10 or so.  He's ecstatic to be free now!  Figures though, we got home tonight and George is sick.  We didn't even really see him because he felt so horrible he passed out in the guest room at like 7:30 after picking us up from my mom's.  The hour or so we were home he was trying not to touch Clayton and get him sick which stinks since this is the first time in four plus months we can hug Clayton good.  Hopefully he'll get better soon, and hopefully Clayton and I don't get sick.

Here's Dr. Sucato, one of the Fellows, a nurse and a childlife specialist...all with some goodies a local artist sent with my mom..  They're "fear not" angels.

October 5, 2013

Here are some old pics and some more recent ones to show everyone what we've been up to and why your not hearing much from me.

Before Texas:

Morning of Halo placement...

After Halo:  so hard to beleive we had to put him through this...the things we have had to ask of this child are so unfair...

Some of our friends:

What we're doing now...

Me getting a taste of Clayton's life when I landed in the ER.

Clayton hanging with his favorite elephant.

Trying to clean out the house to sell and having to replace old carpet stained by chemo vomit and crazy fits of chemo diarrhea...just being honest.

Trying to get the thrift store in order.

Going through months of mail.  Most of which is Clayton mail.  Insurance claims, bills, hospital surveys...lots of phone calls to make.  You would be surprised how often hospitals overlook insurance, bill you and you have to call and fix things.  My credit will probably be ruined forever in part because they send these debts on to the collection agencies, you do not always get a first or second notice of the bill and they don't care if they messed up.  Once it goes against my credit it's there and it doesn't matter if it's their fault or not.  I even had bills from a collection agency saying we owed USACW thousands.  I had never gotten a bill from the hospital about this.  I called the hospital to figure things out only to learn they had switched systems and there had been an error, we did not really owe them anything.  But once it goes against my credit it doesn't matter if it's their fault...bogus.  And this happens regularly.

And trying to clear the property (that's George) so we can get started on the house. (As for anybody with an opinion about this, we are building a 1,000 sq ft home on free property to live more affordably.  We are making a smart financial decision and one that is respectful to all of those who have tried to help us financially.  So if anyone does not understand this and why it it the right choice...well I don't care.  I'm tired and a little grouchy and while incredibly thankful to those that have shown us such an outpouring of support, I am slightly bitter towards those very few that feel qualified to judge our lives and the choices we make.  Maybe if those people walked a mile in my shoes, they would spend less time trying to judge my family and more time bringing judgment against our government and our society for the lack of funding for pediatric cancer.  Now that would be time well spent.  Rant over.)

Anyhow, just a few old pics and a few recents explaining why we are so absent right now.  I'll update when we get Clayton's cast off.