EPIC PART II (Kind Of...)

We are home from the hospital.  Charlotte is doing well.  She and Daddy are settling in on the couch in their Bronco outfits getting ready to watch Monday Night Footbal.  Below is Roger's post that he has been working on for the majority of the day.  Read on...

Not really Epic Part II but still long.

“Everything is on its way to somewhere else.”

Here we are looking at the probability of going home soon.  CJ woke up about 5:30 and the moment she saw me, she reached out and wanted to kiss my nose!

She's doing very well this morning, eating well and all that.  The only side effects of the surgery so far are an eye that pulls inward a little and a very stiff neck.  Neuro has already been up to see her and they say the eye thing is most probably a little swelling or maybe a nerve got "touched" during surgery.  She moves it well all around so the Doc wasn't too concerned and they'll be back to check up on her later.

The stiff neck was expected.  I've done my poor man's physical therapy on her head and left hand a little to try and help.  She doesn't necessarily like it but she tolerates me interrupting her Mary Poppins or Curious George or whatever she's watching at the moment.

They sent up her dose of steroid and it tasted awful (I checked).  So I didn't make her take it.  We have some good tasting stuff at home that we had brought down because one doctor said we could but the pharmacy refused to let us give it to her (I mean, what's it going to do to her?).  I appealed to them again and they finally agreed to let us give her ours.  Rachel had to turn around and go back home to get it but I think it's worth it to A) get it in her to help with the healing of the surgery, and B) not turn her taking it into a crisis situation. So everything is cool at the moment.

Miss Heather, Wyatt's mom, is bringing CJ a milkshake-shake this morning.  She got to talk to Wyatt on the phone for a bit this morning which was really nice.  He's certainly talking a lot these days.

Now for some heavier stuff...

As things progress, I think it's typical for people to fall into despair.  This is a horrible situation and both Rachel and I have cried more than we thought possible.  Personally, I have only "broken down" a couple times since we got the news on Friday but there seems to be a constant drip from the eyes like a faucet that can't be completely shut off and my heart constantly aches.  I know our friends and family are feeling awful as well.

But, and this is very important to me, as sad as this situation is, we can't despair. My spirituality runs slightly different than most but it's still very deep.  I am thoroughly convinced that things happen for a reason.  There has to be something holding the universe together; otherwise, according to chaos theory and quantum physics, there's no reason why we shouldn't all suddenly turn into random objects like ashtrays and lawn mowers or have VWs growing out of our heads at strange angles.  We have no idea the reasons but they are there.  My latest mantra is: Don't try to find the reason in the darkness of the moment.  The reason will show itself eventually.  Right now there is no reason. It's my version of faith.

That doesn't mean we're sitting back and just letting things happen.  We are still discussing options with Dr. Kahn, Dr. Wolff, and Dr. Tye.  They are reaching out, discussing CJ's case with other colleagues and we will be seeking out alternative therapies like acupressure and chiropractic if for no other purpose than to manage any pain.  The absolute main goal is for Charlotte to be as comfortable and functional as long as possible.

We appreciate the occasional message letting us know of treatment options or a doctor who does a certain kind of therapy but rest assured, between all of our medical and therapeutic professional friends, we have explored possible avenues everywhere you could think of.  Dr. Kahn and Dr. Wolff especially have discussed CJ's case with other Doctors all over the country.  The last chemo protocol and the Proton therapy were both cutting edge research/technology, all with high degrees of success.  None of it worked.  Anything is possible but we're not going to delude ourselves as painful as that may be.

Which brings me back to my discussion on spirituality and the word of the day, "Grace."  It's a word that has been floating around in my brain for quite a while and I'm still digesting it but I feel I'm finally starting to get the slightest glimpse if it's true meaning.  "Kung Fu" is one of my favorite TV shows of all time and it was full of little tidbits of wisdom including one I still use.  "When a man finds his true path, Heaven is gentle." That, very loosely, is what grace means to me. It's that Michael Brecker concert back in 1988 on the University of Miami patio that reached deep inside me and showed me what power music could wield.  It's that bartender at the Invershin Inn in Scotland who pulled out a guitar and reignited my passion for music.  It's the "Home" feeling I get when I'm teaching at Romp n' Roll.  It's the conviction I feel that CJ came here intentionally; that she chose us to be her parents because of some purpose way beyond our ability to comprehend. It's asking the network for a pony ride for Charlotte and getting 50 offers in an hour.

Here's something else...In Robert Schimmel's book, Cancer on $5 a Day (Chemo Not Included), he mentioned his son who had died from cancer some years before. He said his son was an old soul and that he believes they had known each other before.  It's easy for me to imagine that for Charlotte considering how easily she learns things and the amazingly deep connection CJ and I share but the one thing keeping me from truly believing that is the pure wonder with which she seems to view everything.  Like a very young soul.

So my take on it is that she is a "wondering/wandering" soul who came here this time to learn stuff and to touch peoples' hearts.  And she has done both extremely well.  I know I'm biased and (trying not to sound trite) that ALL children are special but I look at all the people Charlotte has touched, even those who have only heard about her or just seen a photograph, and I can't help but be convinced that she has something extra special about her.  How many of you fell in love with her the moment you saw/met her?  It's more than just chemical or visual.  She has SOMETHING about her and I can't tell you how privileged (full of grace?) I feel to have been allowed to be her parent; to watch her “collect” people’s hearts and see that special something in action.

And because of all the hearts CJ has touched, I'm fully convinced that CJ's Thumbs Up Foundation is going to be absolutely huge.  She will continue to collect people’s hearts long after she’s gone on to the next part of her journey and families in similar situations as ours will have at least one more place to turn for support.  Could that be a reason for all this? Odds are it’s just another step towards somewhere else.

"Cancer sucks 99.99 percent of the time.

"Cancer sucks 99.99 percent of the time. But if you want your pool cleaned the next day or you want to go to the head of the buffet line, cancer rocks. Yeah, .01 percent of the time, having cancer is a real plus." -- Robert Schimmel in Cancer on $5 a Day* (*Chemo not included)I have been reading this book and it is great. It's a short read (less than 200 pages) and chronicles Schimmel's battle with non-Hodgkins Lymphoma. He is a rather crass comedian so some of the humor is on the harsh(er) side but I dig it. The memoir is both poignant and hilarious. He also lost his son to cancer 8 years before his diagnosis so he's seen cancer from many aspects. Highly recommend.In other news, Charlotte and I had a busy day. I had a part recalled on my VW so we had to trek over to the west end to get it fixed today. The guy at the dealership that checked us in saw Charlotte curled up in my arms (not wanting to be put down) and said, "Oh, someone's sleepy today? Yeah, my kids didn't want to get out of bed today either.". The guy meant well but all I could think was, "Dude! You have no idea." She had her hood up on her jacket so it was kind of hard for him to see the "cancer kid" hidden underneath all those clothes. This is just one example of the funny (funny-strange) ways that cancer effects your day-to-day life that you really don't think about until it happens to you. I mean, before this, I would never even THINK that a kid holding tight to mom for dear life was doing so because she was exhausted from chemo and wanted nothing more than to curl up and go to sleep...because of CANCER. So it stands to reason that other people would not make that assumption as well. And yet, you want to sit there and scream, "No! You idiot! My kid has cancer and gets toxic chemo medicines every week (every day) that drain her system of her last ounce of strength! She can't walk normally and doesn't have normal balance because her THREE brain surgeries have damaged her nervous system and all her coordination. Possibly permanently. She has a compromised immune system that makes any little germ a possible source of infection. She can't even get her regular immunizations because her immune system is shot. She hasn't been to preschool in almost a year and she hasn't had a normal playdate with another kid in months. Don't even THINK about telling me that YOUR kids are like MY kid. Don't even THINK about telling me how you can relate!!!"But I didn't say that. Thought it. Didn't say it. We all have our issues. Anyway, we went from the VW dealership to Occupational Therapy where Charlotte endured 45 minutes of clinical torture. She started off ok but had a really rough time and wanted to call it quits less than 30 minutes in. We took lots of breaks and gave her lots of encouragement. Still got the heartbreaking tears that made me want to cry myself!I grabbed a quick bite to eat on the way to the clinic. Charlotte munched a few crackers and a bit of cookie. Once at the clinic, they looked her over and got my report from the weekend. Amazingly, she didn't lose any weight but I am sure the overnight fluids helped that. We talked at length with the NP about the shakiness, lack of appetite, and fatigue. The best conclusion that we could reach is that Charlotte probably has Secondary Somnolence Syndrome which is a fancy term for an intermediate after-effect of the radiation that hits (surprise!) 6-8 weeks after the last treatment and (surprise!) causes fatigue, nausea, vomiting, and anorexia (lack of appetite/eating). So, that probably coupled with the effects of the Velcade is the best explanation for her current situation. It is expected that these symptoms will dissipate in about 2-3 weeks. Sometimes they will give steriods to help with the symptoms but they don't really think that is indicated in Charlotte's case. Her numbers were actually halfway decent so she got her flu shot (minimal drama), got her Velcade, and we were sent on our way till Thursday. They're going to order a few more packs of IV fluid to have at the house just to keep her sugar and hydration up. They did also check her blood for other levels such as thyroid, vitamin D, etc. just in case but so far everything looks ok.So that's pretty much it. She fell asleep on the way home and is currently resting in her "downstairs bedroom". I may seize the opportunity to get some paperwork done.Rachel