ChloeWatts.com

Thursday, Oct. 28th

Here’s what we know now.  The tumor is the size of a small marble.  The possible procedures are surgery, radiation and/or chemo.  We have an appointment with the surgeon on Wednesday, followed by our Oncology doctor.  We should be able to develop a plan after that day.

Everyone is trying to continue with their daily lives although there is a lot on our minds.  Halloween is still going to happen for the kids… and adults.  We will still be going to Michael Jacksons’ “This Is It” on Saturday.  Colin is still singing in his first High School concert on Thursday night.  This is a big curve ball that we intend to hit out of the park, but it takes concentration.

In the meantime, the quandry is how to get this blog up and running again.  It’s been so long since Chloe has had a “Problem” that readership has fallen off.  My suggestion is, for those of you who helped develop the following the first time, please do what you did before with forwards and the like.  I actually add www.chloewatts.com to the signature on my emails.  I’d like to see this prayer network triple over the next couple weeks.

Thanks for all you have been for us.  We truly appreciate all of you.

Blessings,

Ron

Monday, Oct 26, 2009

On Friday, Dana and I brought Chloe in for her three-month MRI.  Everything went well, with her waking without incident.  Then all we needed to do was wait the weekend to hear the results on Monday… today. 

Chloe paraded into the office with the nice big windows followed by Mama and Me.  Traffic kept Dave for a little while but he got there before anything really happened.  Chloe was getting vitals done and all that was fine.  

The doctor came in and did all the coordination exercises with her and poked and prodded… all okay there. 

Then came the bombshell.  We were brought out to view the results of the scan.  The tumor grew one and a half times its size in three month.  It’s now about 13mm round.  To this layman’s’ eyes however, it appears the growth is all away from the brainstem and into the open/accessible area of the brain.  That’s a little bit of relief.  The doctor went over all the views and discussed possible follow-ups that will be considered. 

The first will be a visit with Dr. Dorsen, the neurosurgeon who operated on her before.  There is a chance he may want to go in a little more aggressively to see if he can get more of it this time.  After which the team would consider radiation and/or chemo to reduce it more and scar it up a bit to keep it from growing again.  Where it is makes it very unlikely they would ever be able to incise it out entirely.   

The visit went as you might expect.  Chloe and everyone strong for a while and then realization took over and some tears and nerves showed.  I think we are all on the same page with how to proceed now at least.  We will meet with Dr. Dorsen this week and then schedule another meeting with the Dr. Norwood team.   

We were assured that this isn’t a do it now situation!  It’s a do it situation, but we do have some time to actually get something done.  What we need to do right away is to get a plan in place and see what the timing allows. 

So, once again, we are calling on all Pray..ers.  Our options are scary and will be very expensive, financially and psychologically, but they are also necessary.  Chloe is ultimate importance and we will see this through to the best possible outcome.  Your help will always be welcomed. 

Blessings,

Ron

Saturday, October 24, 2009

Chloe completed her MRI procedure yesterday and it went smoothly.  She woke up much easier this go round.  For her, because the docs order an MRI with contrast it means having an IV.  She requires total anesthesia at this time for comfort, less nerves.  I suspect she will be able to have and IV in the future and it be successful.    Anesthesia is a tricky thing.  She had a rougher ride in recovery 3 months ago.  Yesterday we had the right team in place who searched her chart for answers on this.

By the way, her chart is impressive in size.  The nurses always mention it to me and I was finally able to see what they mean.  Picture a sandwich you coudln’t even imagine sinking your teeth into.

Three months ago, the doc had Chloe breathe the Gas all the way through the procedure then at the end , gave her ‘liquid” sedative.  The Gas was harsh on her throat…she tasted it, had difficulty swallowing. Basically she was drugged out for quite awhile and we stayed in recovery over 45 minutes. 

You know how its said, “Timing is everything?”.  Yesterdays anesthesiologist decided to LISTEN to me, so she searched back 6 months ago when the MRI went smooth as honey and heres what she discovered.  Give Chloe the “Gas” for a short period of time, then early in the procedure(as opposed to late) inject the propynol, giving it a chance to wear off gradually.  This leaves the patient less groggy.  Recovery was about 25 minutes or less.

She was asking for a double Cheeseburger from McDonalds, with fries an hour later.  Since she hadn’t been allowed to eat because of anesthesia , we headed there.  

and I was alright with that.

ya know, sometimes it really is ok to supersize.

mamalion

It’s Wednesday Night, October 21, 2009..MRI this week

Yes, its time.  MRI time.  Friday at 10 am.  

 Somehow, there is no getting ‘used’ to witnessing this child undergoing total anesthesia.  She prefers this as it aleviates her fear of the needle as she needs the contrast (dye injection) each time as well as it being a lengthy procedure.  Her face is covered with a mask and if one is prone to problems with tight spaces, this could be your least fun place to be.  There is a sound which is unforgettable as well.

To be with her lately  is to see and feel vibrance and silly love.  She has new adorations , new views and a new hairdo to boot.  Michael Jackson is someone to ask her about.  Be sure to allow TIME to happen as Chloe explains she believes he is an angel now and watch’s over her.  He was wronged on this earth, only loved children, never abusing them and was so misunderstood.  She finds her own solace in his music and lyrics

We have tickets for Michael Jacksons last gift on this planet.  His film, This is it.  Chloe is thrilled.  Thanks Ron for ordering the tickets and for B.W. on the unexpected gift of it.  Its been a tough , tough month.

Chloe has told her psychiatrist she doesn’t need therapy.  Her Dr. honors Chloe’s request and wants to empower her to tell the rest of the Doctor team.  The psychiatrist feels certain she doesnt want to taint Chloe’s future feelings about therapy so is onboard with this request.

Colin is riding the rollercoaster of grades in his first year in high school.  Socially, someone has caught his eye, perhaps his heart and we listen as he banters about this evolving feeling and friendship.  I appreciate the trust and often consider his questions and get back to him on these issues.  Nothing, when you are 14 is insignificant.  Do you remember?

Ivey has a new tool.  A harness! She walks brilliantly with this useful garment.  We are hoping she won’t be as difficult as we pass other dogs on our walks.

Colin tried out for a one act play this evening at school. Please  keep him in your thoughts.

Chloe faces, on Friday her MRI and the results coming next week. Please keep her in your thoughts.

Likewise, we send you ours.  We understand the power of being connected to all, even and especially the ones who pretend to hate us, to be angry and who say and do things with no ones best interest at heart. 

Choose to be

Dana

September 21, 2009

Monday , August 24 , 2009

Chloe has been away on a road trip.  She is in great hands with Grandma Lee and Grandpa Sam.  Her words to me were, “Please Mama, let me go on this trip….to leave all the worry”. 

Who can’t relate to this amazinging truth?

I guess what astonished me most was her emailing me every day as to her adventures, her moments, the different hotel/motels she would experience.  From really small to awesome.  Food on the road has been shared as well.  Ribs???  Chloe??.  You GO GIRL!!

I believe I even heard utterings of a horse back riding trip.  Grandma….you outdid yourself!!!!

During this time, all Dr. visits stopped. 

STOPPED COLD.

Good for you Chloe for recognizing and asking for what you needed.  May we all be so bright and enlightened.

Your brother went on his adventure also.  He traveled North to Canada to be with Aunt Sandy and Cousins Jeremy and Regina/Rob.  Seems to me I saw some pictures of him mowing Sandys lawn?????  Colin is living like a vampire with days being nights and visa versa and yet I did see a pic of daylight with him in it.  Bravo Colin for asking for what you needed as well.

What holds us all back from asking what we each need?  Do we feel confused by our own rules of want verses need? 

Perhaps the knowing isn’t as important as just the doing.  Go…..do……for…..YOU>>>>.

Listen to that voice you know has been whispering for way to long now.

Thanks Nike for saying it….Just do it.

Peace out.

Dana

Thursday, July 30 , 2009……The heat is on!

No longer do we have to imagine our city at 106 degrees.  The scene from Wizard of Oz rings true this week. The wicked witch has been bombarded with a bucket of water and she’s lamenting, “I’m melting, I’m melting…what a world!!!”…or something like that.  It feels like that here.  Whew!  Even Ivey has had sleepless nights.  She’s even taken a liking to being petted with ice cubes(my crazy invention)

Last Friday was Chloe’s appt with Dr. Norwood (they simply adore each other) to interpret and show us the MRI results.  He said he is most ‘interested’ in something which showed up in the contrast portion which did not appear at the MRI results March 31.   This can indicate, “activity”. The measurement difference with the actual tumor was perhaps only a bit, if at all since no two images can be captured exactly the same way….In other words, if her chin was positioned just a bit different from one MRI to another, then a slight difference in measurement will reflect that. 

This means she will have to have another MRI in 3 mos plus most likely a spine scan as well.  We were hoping to graduate to a 6 month MRI schedule and hear ‘well, NOTHING going on there….”  Dr. N has discussed how “key” her nutrition is , especially now so she won’t be even more delayed than she already is. And, I suspect in case we have to ‘talk’ about any kind of treatment should the next MRI contrast portion show up even brighter than it did this time.

The tumor board was to have met this past Tuesday and Chloe’s case would be discussed at that time with all the specialists as well.

All this sounds serious and it is, but if you could have been a fly on the wall to watch how much Chloe enjoyed this appt, teasing Dr Norwood at every moment….  He even told her to “Stop with the face”, while laughing up a storm.  He is from the South and yes talks with his hands so she began to mimick this by putting her elbow in the air much like he was resting it on the table.    The two of them have their own comedy routine.

Dr. Norwood has upped her dosage of Periactin to stimulate the appetite and wants us to keep ‘talking, talking’ about nutrition  because he is adament about this:  “The tumor is not causing the vomitting.  The two are conincidental as the spinal fluid is able to travel all around and is not blocked there(where the tumor is).” 

As Chloe and I arrived at the hospital last week for this appointment, we had just gotten off the elevator to the Oncology floor.  We noticed an entire family flock around this little boy who was smiling big as you please.  We heard one say to another, “He just had chemo today”.  Big as you please he was smiling.  He has cancer, but cancer we saw that day does in NO way have him.  Our compassion came alive in that moment and Chloe whispered to me, “He had chemo today, did you hear that?”. ” Yes and did you see how happy he looks? I replied back.

The surprise is really none at all.  Our children are the masters at  teaching US.  If only we’d quiet our mind, our technology and our yearning for more to hear the essence of what their will is calling out to teach us.

Time with them while we are all here.

Even though the week has been one of personal challenge, I’ve hugged a new quote in gratitude and blessed its arrival into my life.

It was written by Massahide( 1657-1723) and it goes :

“Barn’s burnt down

now

I can see the Moon”

Dana

The news of my MRI!!!!!!!!!!!!! Friday-July 24, 2009 Hi.

Hello there everyone. I’ve not writen the blog in like, FOREVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! But today we got the “interesting” news about my MRI. Dr. Norwood showed us ( meaning, my mom, my dad, and myself) the results of my MRI. He said that the results were “interesting” meaning, from what I heard, tumors usually don’t take up the contrast when it’s not active, but mine did. Only a smidget of the tumor took up the contrast though. Since he was talking all “Doctery”, and stuff, I decided to give myself something to do. Dr. Norwood talks with his hands basicly or he always rests his elbow or something on a “prop.” It gave me something to do though. We had just seen the results and now we were just talking. “Don’t give up hope, Chloe.” Dr.Norwood said as he wagged a finger at me. I, in return, wagged my finger at him.  “Don’t do that to me.” he said (not to be mean or anything like that). I kept mimicking Dr. Norwood and he would just laugh at me, saying that I was a “peanut”, a “doll” or “adorable”.

  Tommorow, I’m hoping to have a sleep-over with one of my friends Mickenzie ( I hope I spelled it right Mickey!), I’ve got to do some of my chores fisrt though.

Today was a good day, but tommorow will be better.

-Chloe

Saturday, July 18, 2009

It’s MRI time again and we can use all of your good thoughts, prayers or whatever you do to make good things happen.  You’ve been successful so far; please keep it up.   

Monday morning, Dana and I will, once again, be with Chloe for her MRI at Emanuel Hospital.  It’s a familiar room and a familiar procedure but it doesn’t make it any easier.  We have a consult set for Friday to have the results read to us.  We are expecting the best so you are welcome to join us in that expectation. 

Chloe is happy and appears healthy, however, we are very concerned about the weight loss she has experienced.  She is floating just above 50 pounds again so she is back on periactin (sp?) to help stimulate her appetite.  Let’s hope this kick starts a new eating routine that will continue without the meds in the near future. 

We just got home from the Cathedral Park Jazz Festival where the kids were able to take in some great music and see the St. Johns Bridge from a whole different angle, underneath.  It truly is a magnificent structure.  If you haven’t seen it I suggest a google tour.

Make-a-Wish has given us another opportunity to have a fun night out.  We are invited to a Beavers’ baseball game at PGE park.  This will be a first for some of us.  It should be great fun.  With Chloe’s luck we’ll probably even get a foul ball.  The invitation comes at a good time when the family has been forced to tighten their belts quite a bit.  But that’s another story.  It is, however, a great learning opportunity for the kids.   

Keep an eye on the site to see what the MRI results are.  We will post them as soon as we hear any news. 

Be well and enjoy your summer! 

Blessings,

Ron

Saturday, July 4th

Last year on the 4^th of July, Chloe, Dana and I spent the evening on the atrium on Emanuel Hospital watching the fireworks. Not a bad night for us but this 4^th beat that one hands down!

A couple weeks ago we heard about Vampire Baseball coming to town as a fundraiser for Make A Wish kids. This was to be a game by some of the cast and crew of the Twilight and New Moon movies. Chloe is a wee bit of a fan…. Like a MEGA FAN maybe!!!

The event sounded like a great idea but we weren’t sure if it was a private event. Dana called her contact lady to see if there were tickets. She didn’t think there were so we pretty much let it go. Then on Thursday Dana heard a bit on K106 and asked me if I could research it for her while she was at work.

The online ticket prices were quite spendy so I emailed the Make A Wish website people and asked if there were any discounts. “We’d love to have Chloe join the other Make A Wish kids at this event. We’ll leave four tickets in will call for you.” Thank you Laila!

When Dana told Chloe she was in shock. It’s hard to get her speechless but I understand this was the way. She probably didn’t get much sleep Friday night.

Saturday morning I arrived at the house by 7:30 am and EVERYONE was up and ready to go. The game didn’t start until 9 am so we had plenty of time to find good seats. After a few circuits around downtown to find the parking garage we took a stroll on the deserted downtown streets to the PGE park where the game was to be played.

It was our first time in the park so I called Laila to ask where we were sitting. The tickets looked like the fourth level. No answer, so I asked where the Make A Wish kids were sitting and they pointed to the sunny seats right behind home plate! Not bad. We might even be able to see some of the cast up close and personal… or at least within camera range.

Laila showed up and we made our introductions. She gave Chloe a button with her name on it and told us that in about 20 minutes we would all be gathered up to go to a private room under the stands. There, the Wish Kids would be given a gift packet from the cast, and we would be able to meet them all. Chloe and Colin about fell out of their seats. Dana was blown away as we never expected this. We were just there to see a fun time game.

In the room there were about 10 Wish Kids and their families and friends. Laila prepped us for the cast who were to arrive soon. We made introductions all around and then the first cast members arrived. Then more arrived. The room was full. The two top stars weren’t there but Dr. Carlyle was, along with Rochelle (Victoria) and Eddie the other bad V.P. and Chloe will have to fill you in on all the names. She’s the one who has seen the move over ten times…. Me, only once.

All the stars met Chloe and most had pictures with her and autographed her book and 8×10 glossies. I say the stars met her but actually She became the start when word circulated that her wish was to go to Washington and meet Pres. Obama. Rochelle wrote in her book “Your wish is my favorite.” And she’s Canadian. (Just a side note. Both Dana and I recognized that Rochelle’s looks, actions and personality matched my youngest daughter, Crystl, to a tee. Crystl is also an actress.) Dana says Rochelle is as sweet in person as she is Bad in the movie.

Dana says Chloe was “Over the Moon.” When you see the pictures on the website you’ll understand. Her face hurt from smiling so much. And Colin, he loved the fact that there were a bunch of 16 year old girls around. He made a good impression in the room as well.

When the V.P. Game started we were shuffled off into our own box dugout. Talk about great seats! We were also out of the 95 degree heat of the day. The game proceeded as any group of non-players would, and it was a ton of fun. A few of the cast had never even held a bat before. It was all Crazy but funny and fun.

The kids couldn’t stop talking about it for the rest of the day. I had to go home to take care of Kitty who just had surgery, so the rest of their 4^th of July was spent out on the hill at Bridlemile Elementary watching the neighborhood fireworks. So much better a venue than we had last year at this time.

If you asked me I’d have to say that this was one successful 4^th! Chloe still says meeting Dave Ramsey was extra special… but I think this was a VERY CLOSE SECOND. I’m dying to see where she places President Obama on the happy list.

Hope you all had a happy 4^th and continue that throughout the rest of the year!

Blessings,

Ron