ChloeWatts.com

Thursday Afternoon 12-3-2009

Running on empty. That about sums up this family today. Dana and Sandy have been the night watch…AND the day watch. They both have been on reserve today for sure.

Chloe had a huge wave day. The morning started out hopeful. She kept signaling, “What time is it?” This was because she knew the MRI would be at 11:30 and her tube would be pulled shortly after that. Then the MRI was pushed to 1:30 and then 1:45 pm. Chloe was anxious to get it over with.

Right at 1:45 they came for her. Dana and I followed her down the elevator to the MRI room. Sandy stayed behind to catch a catnap. Rev. Barb met us in the waiting room and was great company. The MRI went well and took less time than I had expected. Chloe slept on the ride back to the room.

In order to remove the tube she had to prove she was breathing on her own and her blood gasses had to come back satisfactorily. Both happened in due time so the procedure was readied. Chloe wanted to help in the tube pulling. It was arranged. The nose tube came out first. The ventilator has a bit more preparation to make sure all is just so.

On the nurses’ timing they pulled this short tube from her lungs and began the suction of all the gunk in her mouth. She was a rag doll as the nurses tried to keep her positioned to get everything. Things went down hill fast. Chloe wanted to breath but couldn’t get much air past the remaining gunk. It sounded like she was drowning. She blacked out and turned gray. The room got full in a hurry as they suctioned and then bagged her to get the O2 flowing again. They got her stable and called the team in to re-intibate and nose tube her. They moved Dana and me from the room for this procedure. Needless to say it was a tense period of time.

Back in the room they explained what they had done and assured us Chloe was safe now. Dr. Quint was on duty and he went over the scary possibilities of what happened. However, he did say that Dr. Dorsen would look at the MRI and come talk with us as soon as he was out of surgery. That was good as we had questions for the master.

Dr. Dorsen arrived about 9 pm and checked on Chloe. He started by saying he had seen the MRI and was gratified by what it didn’t show. We were ushered into a computer room for a look. We aren’t the experts but we couldn’t see any remaining tumor and we could see the divot that was cut from her brain stem.

One of our main concerns, after breathing concerns, is the fact that Chloe can’t see very well. Her vision is impaired and her eyes dart around when she tries to keep them open. She describes it as being scrambled or scattered… without being able to actually say that. Dr. Dorsen didn’t feel that could be as a result of the surgery but he didn’t have a good idea what it was about. If it was actually double vision then it could be related to pressure from the swelling. Whatever it is we are hoping it resolves itself over a short period of time.

He told us that none of the things we had spoken about were off the table… that Chloe was still in a dangerous place in time. Whatever damage she has is not really known yet and what will be able to be reversed is also in question. We are hoping for a full and complete recovery… so that’s what we’re holding on to.

Chloe did get to settle down. She was asking for sleep medication when I left. I’m hoping all three of them can get some rest tonight. God knows they need it.

Today was not the best of days but it did have its moments. Chloe endured a lot. She had a catheter removed, replaced and removed again. She had two tubes removed. She went out like a light and had two tubes reinstated. And she had boughts of pain, discomfort, frustration and anger. She also had some times where she smiled and would have been laughing had there not been a tube stuck down her throat.

So, it was a day of ups, downs and sideways. When the downs come it’s like getting hit by a wrecking ball while leaning up against a steel wall. But somehow we all get back up and look toward the future when we are able to bring Chloe home and have her continue being a fun kid on her way to a great adulthood.

By the way… Prayer works.

Blessings,
Ron

Thursday, Dec 3rd, 2009

Thursday has been a better day than Wednesday for sure. Overnight Chloe had a pretty good time of it. She was able to get some well needed sleep. Dana got a few hours and Sandy a couple in the chair. Not bad considering the way the day started out yesterday.
Today she has been very aware of everything and, although she can’t speak due to the tube, she makes her wants and needs known through sine language. Some of us are better at reading her than others but we can all get a smile out of her easily enough.
At 1:45 pm we brought her down to the basement for her 24 hour MRI scan. She is still sedated at this point but everything went well with the procedure. When she wakes up we will start weaning her off the ventilator. This should go quickly as she is breathing well now with just a minor assist.
The nurse seems to think we will be out of PICU tomorrow or the next day. We’ll see what Dr. Dorsen says, as he’s the boss. He should be up to see us in a little while.
Blessings,
Ron

Surgery Day, Dec 2nd, 2009

For those of you who think you‘ve taken hard tests at your state university, private college or Yale… I challenge you to take one of God’s tests.  They are the hardest tests ever!

Today has been one of those tests.  

In keeping with the recent theme I’ll start at the end of the day.  Chloe is asleep thanks to some sleep-help meds.  Dana and Sandy are taking the high watch overnight at Emanuel Hospital’s PICU.  The ventilator is still hooked up; she still has a nose tube and a bunch of IV lines.  The plan is to take the ventilator off after the MRI at 11:30 am tomorrow.  She has been, basically, breathing on her own for the past 8 hours.  However, she did give us a scare when she received some pain medication.  She stopped breathing.  So they bagged her for a little while to get her going again and upped the ventilator a little to help her through the night.  She is listening to Michael Jackson and looking peaceful. 

Now I’ll jump back to the beginning of the day and load you up on this roller coaster from hell.  Check-in was at 6 am.  Actually about 6:30 when they finally called us.  We were then brought to a room where she got into her PJs, they took her vitals and the nerve monitor glued wires to her head and chest.  These would monitor nerve stimulation throughout the surgery to make sure she was still responding.  Along with the constant MRI scan she would be under the most sophisticated medical eyes possible. 

The basement is where the surgeries are performed, so down we went.  Eighteen months ago the room was empty except for us… it was Friday the 13^th.  This year it was packed.  Dr. Peter Scott, Chloe’s classmate’s dad, and also the anesthesiologist, came over to let us know his part and to calm everyone with his personal manner.  Next came Dr. Dorsen, the surgeon, who has become very fond of Chloe.  After a few final checks Chloe was moved to the operating room.  It was 7:30 on the dot, as promised.  Dana, Sandy (Dana’s Sister), Chloe’s Dad and I all left wondering what the heck we’d do for the next four or five hours.  

Surgery was to begin at 8:30 and we expected to be called back about 12:30 or 1:00.  The buzzer went off at 11:30 and it led to a little panic on Dana’s face and voice.  We went into the waiting area to hear from Dr. Dorsen.  He showed up in about 20 minutes and brought us into that very familiar conference room, the one from last time. 

Dr. Dorsen was somber in his delivery.  He told us that, as far as the surgery was concerned things went well, she did well.  However, as we knew, he chased the tumor as far as he could until it just disappeared into the brainstem.  He was aggressive, as planned but when the nerve sensor for the feeling in the hands showed an alert it was time to stop.  This could mean there had been damage. 

He was concerned, very concerned, because she wasn’t waking up or responding.  He told us that if she didn’t wake up within 48 hours we would be in a dire situation.  It was so obvious that Dr. Dorsen was deeply disappointed in what was going on.  Needless to say that would be an understatement of our emotions at this point.  He said of the 10 things we would need to have happen… waking up was #1 through #9.  The rest would be easier. 

He reassured us that, if it had been his child, he would have done the very same thing, exactly as it had been done.  He wanted to make sure Dana knew she made the right decision to bring Chloe in.  The tumor had grown to a state that was just about critical.  It was about to block the spinal fluid channel.  That would have put us in a very big emergency situation.  As it turned out he was able to get a lot of the tumor and open that channel wide open.  He also assured us the tumor was still benign.  

The decision was made to keep the breathing tube in and transport her directly to PICU.  We would not be able to see her for a few hours.  It was suggested we go home and come back at 5 pm… like that was ever going to happen for Dana, Sandy or Me.  Rev. Barb was with us also.  She is such a tremendous support!!!  Dave was in contact remotely as he had some transporting of people to do during the wait.  The wait was about an hour earlier than any of us expected so he got back, with Ramona, as soon as he could. 

We went directly to the PICU waiting area and I let them know Dana was there for Chloe as soon as she was allowed to see her.  They said it would be just a little while. 

The PICU doctor made it out to us sooner than we expected and  let us know that Chloe was, in deed, waking up and responding to instructions… like squeeze my finger.  We just kicked #1 thru #9 out the window!!!  Now to work on #10. 

Dana and I were let in to see her at this point.  Chloe recognized us both but she was still very groggy.  Sandy, Dave and Ramona were all able to get turns in the room on the onset.  She is unable to focus on anything and this could be due to some trauma to the brainstem.  It may only be like a bruise but we won’t know for sure for awhile.  The swelling needs to recede first. 

Although the breathing tube is keeping her from speaking, Chloe is sending orders via sine language and we are determining, the best we can, what she’s asking for.   

At about 4:15 or so, Dr. Dorsen and Peter Scott both came to see Chloe.  Then they came out to speak with us in the waiting area.  Dr. Dorsen was actually smiling… which is a trick for him…  He was very pleased with the progress she had made during the day but, once again, warned us, “We are far from out of the woods.”  The first 48 hours are the most critical.  This is the time that people who are going to have problems will have them.  There is a lot of debris in the surgery site that needs to get absorbed into the body.  Anything is possible during this process. 

With your prayers and a great doctor and his staff we have made it through today.  Tomorrow morning I’ll be back at the hospital to spell Dana and Sandy in hopes they can get a little sleep.  Dana is running on zero hours for a day and a half now.  Personally, I believe in Chloe’s ability to heal.  The only thing I’m holding onto is seeing Chloe coming home in a minimum amount of time and continuing her vibrant life as a teacher. 

Keep your prayers coming for Chloe and her entire family.  

Blessings,

Ron

Monday, Nov 30th, 2009

November 30th, Dana’s Birthday, and two days before Surgery. But let’s back up a few days to start this story.

Wednesday night the four of us went to a prayer circle and pie fest at Celebration Church. It was an extra special night for Dana as she found support and release in the evening. At the end of the evening Rev. Barry Dennis gathered us all to the center of the circle for some of the tremendous healing energy of Spirituality. And, before we left, Ann gave Chloe her favorite staple food source… a can of whipped cream!

Thursday, Thanksgiving, Dana had the four of us and her Brother Kevin and his wife Laura join in for Thanksgiving dinner. Colin had the entire place decorated to the nines and Dana put together a wonderful dinner. It was tremendous to have Kevin and Laura there. They have been Dana’s angels for quite some time now. They are such special people.

Friday morning the four of us plus Ivey the Jack Russell Terrier, loaded up the station wagon and headed for the coast. Two of the best friends a person could have offered us their beachfront home for a few days. If anyone had told us we would be toasting marshmallows on the beach on November 29th at 7 pm, looking at the stars in sweatshirt weather, I’d have seriously questioned their sanity. It was gray when we arrived. An hour later it was blue skies and stayed clear until we were pulling away from the house on Monday afternoon.

We walked the beach every day and Chloe sent her dragon kite to the end of its string. Chloe and Colin took turns running with Ivey toward the waves. Yesterday we were surprised by a couple waves that snuck around the tidal pools we were looking at. Ivey was instantly swimming. To say she was a bit confused would be an understatement. She was never afraid however and continued to attack the foam as it rolled in with the waves.

We brought most of our food along for the trip so mealtime was easily handled. Even Chloe wolfed down good portions after running on the beach all day. One day we did take in lunch at Kylos. We celebrated Dana’s birthday and finished the meal with Dana, Chloe and I sharing a Marionberry Cobbler that is completely out of this world! We get it every time we go to Lincoln City. Next time we are going to insist Chloe have her own. She dove into the dessert like it was her first meal in a year.

We owe our friends sincere gratitude for this gift. It was heartfelt and heartwarming. Thank you.

Now we are all home. I’m back on the east side as I had a rehearsal for the big band concert my band is putting on at Celebration Church Dec 6th. It’s an annual event that I did hope the whole family would be able to enjoy. I guess we’ll just have to wait until next year. You’re all invited though.

Dana and I both had many emails to catch up on today. Then there was the unpacking and laundry. Luckily the boil water order was lifted yesterday. It seems some e-coli found its way into our water sources for a few days. We didn’t need to hear that with Chloe off to the hospital on Wednesday.

Aunt Sandy will be here tomorrow in support of Chloe and the family. Kevin will also join us at the hospital. There are literally hundreds of people praying for the best outcome to be produced by Doctor Dorsen on Wednesday. We know that Chloe is going into this surgery in so much better condition than the last time. We also know that Dr. Dorsen has a special connection with Chloe this time.

You know that saying about wanting it more. For instance, the racer who wins is usually the one who wants it the most. They all have the same kind of cars and their skills are all similar. So it takes the one who really wants it most to come out in front. That’s how I see Dr. Dorsen this time out of the starting gate. He’s going to win with Chloe and his pit crew will be ready and waiting for when they show up.

You have all been such a wonderful source of power, hope, faith, joy, helpfulness, kindness… Now we just ask for some more of your best prayer work. Let’s make this Chloe’s last journey to the surgery ward. Let’s see her come out of that room in perfect health with the best results. Let’s see her healing in the shortest period of time, one week. Let’s do it together!

Blessings,
Ron

Sunday, November 22, 2009

To know her is to love her.

Who comes to mind when you hear these words? A teacher, a mother, your neighbor, your dog or cat?

Last night, my child said to me (you all know which one)… “Mama, you’ve got to stop preparing for this… pull in the reins…… ENOUGH!”

She is even referring to having FUN. It all feels like too much.

I listened and this is my response. Anyone out there heard of a book called Zero Point? Neither had I until today. Apparently, if I am correct the thought/prayer used in this book is this: I’m sorry. Forgive me. Thank you. I love you.

The author I am told, took files in his hands and prayed this thought/prayer (You’re own belief system here). You see, these files were of people who were mentally and criminally locked away… throw away the key types. Many had given up on them. Interestingly, the author of this book held the files of these people in his hands, never meeting them and said those thoughts…. I’m sorry, Forgive me. Thank you, I love you.

Within some time, every single person was released.

The point is…. if we say this ‘thought’ and think of anyone we’ve ever hurt and /or… say this thought and think of anyone who has hurt us. What gives???

Surrender.

And in that, perhaps healing begins and ends.

This is also a time of birthdays in our family. Grandma Lee….. Ron…. Ivey (yep… Ivey was born on Thanksgiving)…. myself ….. and I notice this as a time of Life happening. Yeah, sure it wouldn’t be honest of me to say you haven’t heard from me before now because I had a cold. I was in raw FEAR. So raw sleep eluded me for 2 weeks and illness crept in. I just forgot what a warrior a Sagittarius is. Sheesh. I just forgot. I knew I identified with a character in a movie. “The Brave One” (Jodie Foster) and although this is a vigilante film, she has a focus…an intense focus and this is who I am right now. Not that you asked, not that you understand but so Chloe is raised up somehow through the intensity of not only myself but from ALL of you. Yeah, I feel you out there. She does too.

In the meantime, we have a young man who silently rises to his belief about all this, Colin. Yesterday he gave his all into a project, which only a ‘holiday’ person can understand. He got out his Santa gloves, from Grandpa Nick (who passed away last year…and who, by the way played Santa Claus for years for children) and proceeded to hang Christmas lights on the house, on the walkway, on tree’s, on an archway… welcome to what keeps PGE in business!!! In fact, any minute now, I anticipate the sudden onset of lights…. oh look now… it just happened. Colin has it all on a timer system. His gift to the world. Thank you my boy, young man you are becoming.

Thanksgiving week. Notice everything…. and nod in your gratitude…..

Dana
the Mother Lion

And to all those I have hurt I say this: I’m sorry, Forgive me. Thank you. I love you. And to those who have hurt me I say this: I’m sorry. Forgive me. Thank you. I love you.

Friday, November 13, 2009

Dana and Chloe are slowly getting over their colds. That’s probably the best news of the week. The worry is thick, Dana’s and, probably, Chloe’s. Chloe’s appetite has gone south and the last two nights she hasn’t been able to keep food down. It would be nice to think that problem was just because she has a bad cold… but we’re not so sure…

Dr. Norwood swears that the tumor isn’t in an area that controls appetite. He said the same thing the last time as well. It’s just very curious that the closer she gets to the need for this surgery the harder it is for her to keep food in and her weight up. It’s tough to watch. She didn’t even have the energy to go to school yesterday.

There have been many fun/nice things happening along the way. There was a surprise package of Cocoa left for the family the other night. That provided something to sip in front of the fireplace. And a friend of Dana’s, Bea, knitted a very nice little blue hat that Chloe fell in love with immediately and hasn’t taken off for very long at all. At work, everyone has been very understanding and supportive. That doesn’t happen at all workplaces.

Dana has been consumed by trying to find things to do with the kids before December 2nd. It seems there are a few movies Chloe wants to see that open soon. Dana’s co-worker, Kiffin, is helping that happen.

We are in deep gratitude for the support, love and help so many are, once again, showing this family. Dana has surrounded herself with friends that know the power of sincerely doing for others in their time of trouble. It’s heartwarming be around this energy.

Blessings,
Ron

Wednesday, Nov 10th, 2009

Day by day we continue to see the 2nd of December approaching. At first it seemed like it was something that, because of our experience the first go round, we would be well equipped to deal with. It’s looking more and more like we wish it was done already.

First Dana, then Chloe came down with horrendous colds. You wouldn’t even recognize Dana if you spoke with her on the phone. Chloe was so bad at her dads’ place that they brought her to the doctor. Turned out to be just a cold but it’s a bad one. Lucky for her that the H1N1 vaccine was available and she did get her shot. I think Colin, Dana and I will all get ours as soon as more is available.

Today Chloe felt so bad that she didn’t want to eat or drink anything. After a heart to heart with her I think she decided that we weren’t punishing her by asking her to keep herself fed and watered. She really doesn’t want that nose tube again and keeping her weight up is the only way to avoid a repeat performance that she hated.

Dana’s computer is still toast. I’ll try and get it working for her this week but no promises. In the meantime you can always email her through the website or through my email address. We’ll let you know when she is back online.

It’s heartwarming to hear from so many folks wishing us well and offering to be there for us when the need arises. With all that Dana has given over the years this is what paying it forward is all about. Thank you all.

Blessings,
Ron

Friday, November 6th, 2009

We have some dates now. Dr. Dorsen wants to meet with Chloe, on the 25th of November, to do a good exam on her before the surgery. This will include some blood work, which Chloe isn’t crazy about but knows it’s necessary.

Then, at 5:30am, on December 2nd, Dr. Dorsen will perform the surgery to remove the tumor from Chloe’s brainstem. This is the plan and we want to see it happen just as planned.

Based on the current pictures from the MRI the belief is that maybe, just maybe, the tumor is not into the brain stem as originally thought. Rather it may be just on the surface. The part that re-grew did so away from the brainstem, the direction of least resistance.

If Dr. Dorsen can scrape just a little of the stem he may be able to get the entire tumor. He assures us that he will only go to a safe depth. The best chance of it not re-growing is if he can get most or all of it.

The game plan after surgery will be to monitor Chloe with MRIs every three months for the next two years. Then the MRIs would be every four months and so on until we just don’t see it anymore!

Tonight Dana and Chloe had an, at home, date night, just hanging out and watching, what else, “Twilight.” I’m surprised that one isn’t scorched by now. Dana said it was really quiet as Colin was with his buddies overnight. The drums in the basement have taken a night off. Between the piano, his song writing and singing, and the drums, I’d say there isn’t much chance for naps before midnight.

Dana is fighting a cold but her biggest frustration is that her laptop is fried. She hasn’t been able to get or send emails in a week. We are going to have someone look at it on Sunday and he will let us know what we need to do. Probably needs to be completely cleaned and some operating system re-installed. It’s bad enough that she only has dial-up but now that it’s not going online at all it’s a real problem… especially now.

Please keep the vigil. You are part of the strength.

Blessings,
Ron

Wednesday, November 4th, 2009

It’s Wednesday night and we have all returned to our dens after an afternoon of speaking with the doctors. Here’s the scoop.

Chloe will undergo more surgery. The tumor has grown to the size it was originally, or maybe a tiny bit bigger. That being said it’s still a small tumor by comparison. It’s still attached to the brain stem, however, it may not be attached as bad as first thought. This is a good thing as Dr. Dorsen thinks there is a chance of shaving it off the stem. This is what his plan is unless things look too chancy once he’s actually at the site.

Dr. Dorsen was great today. He was personable and very willing to answer any and all of our questions. And it was quite amusing to see him soften to a puffball when Dana brought out Chloe’s school, 8 x 10, picture. “Wow, she’s grown” was his reply.

We discussed quite a bit with him about the surgery, history and future. To make it simple we went out of the room feeling comfortable… as much as one can under this situation.

Next up was Dr. Norwood, head of the oncology department. He and Dr. Dorsen have this great psychological dance they do that really helps lighten a heavy moment. Dr. Norwood concurred that he felt resecting the tumor was the best choice of action given its size, location and probably benign status. It was also confirmed that “there is some merit” in the tumor growing along with a child’s growth spurt. So this may account for its, relatively rapid, size increase… over three to six months.

The big news… the news Chloe wanted to hear… “No Nose Tube.” Her secondary concern was the pain she went through post-op. We also feel comfortable that this will be able to be controlled much better this time around.

The hope is for a couple days in ICU and a short week on the main floor. That’s what we would like the vision to be for now.

Chloe is so much healthier this time around and her attitude is great. She is probably doing better than Dana and Me although we are giving it a good try.

Thank you all for your thoughts and prayers. Everything helps.

Blessings,
Ron

Sunday, Nov 1st, 2009

It’s Sunday and for a week now I’ve been trying to figure out how a sphere the size of a small marble could screw up so many lives.  It’s not an atomic bomb or an earthquake in downtown New York City.  It’s a little piece of un-cooperating cells forming a tumor in a little head that is filled with only good thoughts for the world and its inhabitants.   

Since Monday those of us deeply connected with this situation have been going through all sorts of psychological changes.  There is confusion for sure.  Chloe has had no symptoms for a long time now and has been energetic, happy and healthy.  She is so much taller and a little heavier than she has ever been.  So what’s with the newest MRI pictures?  There is no way this thing has grown.  It just doesn’t make sense. 

Colin, age 14, is in a cloud.  I’m not sure he fully understands what we are facing once again… or maybe he’s just in denial of it all as a way of self-preservation.  We know he is an extremely sensitive individual so it’s not a matter of him just ignoring it… or is it… 

My days just tend to go on by with nothing really important happening.  My mind is switched on but my senses aren’t.  It’s sort of like walking through a dream… or nightmare… once again.  I keep thinking, or dreaming, of different cures that haven’t been addressed yet.  Is there a way of freezing this thing?  How about super microsurgery?  What about attack genes that get implanted in other types of tumors?  Cut the blood supply off to this thing and let it shrivel up.  Something new has to be out there and available for us. 

Dana is just worn out.  She doesn’t need another person asking her how she is or what’s going on with Chloe.  If you haven’t been through something like this then you have no idea how draining those heartfelt, sympathetic questions can be.  Even if it comes from a best friend it is just too much as it brings things into a reality you are just trying to escape for a short period of time.  She loves all of you who are filled with concern but she needs her space from all the questions.  Tonight she is in her cave, alone, trying to keep herself busy to stave off those thoughts.  This blog is designed to keep you informed so I hope you will be back to it often.  We will try and keep the updates there. 

And then there is Chloe, who can laugh at the drop of a hat but has that inner sadness that is so hard to witness.  You can just smell the wheels turning in her mind with a million thoughts bouncing all around.  She doesn’t want to go through surgery again but she knows that is a real possibility.  When she thinks about it she starts making deals…. I’ll do this if they promise not to do that…  How else is an old 10 year old supposed to process something of this magnitude? 

So, that’s Sunday.  The two adults are away in their sanctuaries.  The two kiddos are at their dads’ house.  And Wednesday is coming way too soon… and way to far from now.  Be well and please be in prayer as we continue to walk in our fog. 

Blessings,

Ron