ChloeWatts.com

Thursday, July 3rd:

We are hoping for a firecracker release tomorrow. No promises of course, but if she does okay tonight they will try and spring her.

Not that today was a piece of cake for sure. She is still pushing around a low-grade fever, some pain and some nausea. And if she goes home it will be with her feeding tube and pain meds.

About 10 A.M. Dr. Olsen came in to give Dana and me the news of a possible release. The tests taken yesterday have shown clear fluids in her spine and at the incision site. Still lots of white blood cells but nothing surprising. She also needs to get her red cells up after so many blood draws. She had 10cc of fluid buildup in the surgical cavity, which may be part of her problems. They were able to drain that okay yesterday.

Her pain level floated around from all the activity yesterday and we really didn’t see much of Chloe today… or rather, she didn’t see much of us, because her eyes were closed most of the morning. If nothing else she slept well, both last night, through the thunderstorm and this morning, through the nurses.

Dr. Olsen also took us to look at the MRIs. It’s amazing how much of the tumor they were able to take out; however, as I’ve stated before, the area of the remaining tumor is of the most concern. That is an area that can cause all of her symptoms and is also an area that can’t be tampered with, without the possibility of some serious consequences.

What it looks like at this point is we will go home ASAP and bring her back in three months for another MRI. The tumor needs to show its hand. If it just hangs out and doesn’t grow we may have a long-term monitor situation. If it decides to get aggressive on us then we will have to get aggressive with it in the form of, further surgery, Chemo or Radiation. The latter is the last choice as it can cause more tumors.

Before the doctor got here Dana was able to get Chloe into the shower. It’s been a few days and you know what they say, after three days fish and little girls stink. Of course, we’d never say anything like that about Chloe…. She’d get us back!

Sarah (I’m not sure of her title but she’s a social worker type) came in to talk to Chloe about her Journey Beads. It seems last night Dana asked her what she needed. Chloe decided on a whole handful of beads that represent Brave. She asked for 5 that represented the number of times she was angry. And ONE for the number of times she was scared… just before surgery. Pretty impressive I’d say. She asked Sarah for a handful of beads that represented A Bad Day. She has a pretty nice necklace going with these beads and may have to do two to use all the beads she has now.

After noon the dreaded PT and OT ladies arrived. Chloe tried to fake her way out of that visit but it didn’t work. She did very well with it even though it’s not her favorite time of day.

After PT and OT, Diane, the Child Life Angel, showed up to bring Chloe to the kitchen area. They were going to make cupcakes. Chloe did most of the work exhibiting a very interesting method of cracking eggs. Not sure I’ve ever seen it done quite like that. It involved a butter knife and some very scary angles of attack. Dave and Ramona showed up just before the cakes went into the oven. By then Chloe was looking pretty pasty. So Dave and Ramona took her back to the room and Dana and I watched the cakes. They came out Great! But that wasn’t a surprise with lil’ miss Chloe Rea doin’ da cookin’.

Back in her room she came back to good color and started getting into her evening pick-me-up. The one thing she left behind tonight was her fever! Yea for that. Let’s keep it there Girl!

I left the hospital about 8 P.M., shortly after Dave and Ramona, and the girls were going to watch “Hopkins” tonight. You’d think they had enough of hospitals.

So the prayers for tonight are to have everything stay in an acceptable range so we can get Chloe home where she belongs. That’s when the help will be more than welcomed so keep the emails of suggestions coming. Dana will be swamped with taking complete care of Chloe, so, along with going back to work, she will be fixing meals, cleaning the house, taking care of Colin, taking care of the yard, answering the phone, are all going to be challenges and some will be pushed aside. These are the areas I’ll be helping in and are areas I’m sure she will welcome help.

Blessings to all of you. Ron

Update, Thursday, July 3rd:

I receive a daily message and this one jumped out at me.  I want to share it with you all.  I believe experiences like this make the following statement jump into reality.

“The difference you make in someone else’s life will always be smaller than the difference it will make in your own.”

Wednesday, July 2nd:

So much went on today it will probably be easier to write about.

Chloe woke up, after a very restless night, to vomiting.  Luckily she kept her tube down this time.  She didn’t have any food or liquid since midnight but that didn’t stop her floodgates from opening.

The doctors came in around 10am and both Dana and Dave were there to hear their reports.  Of course those reports were that they were all puzzled.  Why the fever when nothing is growing.  They did find a little something in the stool sample but not something that would be causing 105 degree temps! 

Dana suggested the Pic Line as an invasive object that the body might just see as a threat, sending the soldier white blood cells to fight it, causing a fever.  Very possible was the response from the doctors.  So, they are changing all her meds so that they can be taken by mouth.  They will decide about taking the pic line out when they see how the oral meds are doing.

After all was said and done they decided to go ahead with the MRI, however, before that happened they decided on an ultrasound.  Chloe hated this procedure as the as the oaf that did it was not PEEDs material.  Probably used to working on old guys as he really pushed on her and was, basically rough.  She doesn’t want another of those.  It came out fine thank you very much.

Then it was off to the MRI.  We will get results of all the tests in the next couple days.  While she was in the MRI they decided to do the Spinal Tap while she was asleep.  So as soon as she came out of the cave they did that.

She came back to the room only to find out that they decided to drain the incision site.  It was off to PICU for this procedure.  It went well in there and she was back to her room by 5:45 pm. 

Everyone was in the doghouse after the MRI though.  Chloe was promised a drink of water but when the draining decision came down it stopped her from getting a drink until after that. 

After her second drug nap she woke up and immediately asked for a drink of water.  She was back!

Her temperature was down most of the day and only went up to 100 at night.  She is back in pretty good spirits, although she is completely wiped out.  This was one of her longest days.

Even though she has been here over three weeks she really hasn’t any appetite for phone calls or visitors.  She doesn’t even talk to us on the phone if she can avoid doing so.  It’s just too draining I think and there is so much noise that anything can be disconcerting.  For instance, the phone rang while we were having a doctor’s visit.  It rang for five or six times before whoever hung up.  I could see Chloe’s face.  Trust me, if we can’t get to the phone in two rings we aren’t getting to it.  It’s really a small room!  Next time we’re asking for a suite.

Blessings and be well everyone.  Ron

Tuesday, July 1st:

Okay, I may have been a little overprotective this morning.  There are so many of you who have a variety of permissions and requests.  I didn’t mean to scare you off.  If you have a question about what you should or should not do you are more than welcome to email me and get a clarification.  It’s the old story that it only takes one to ruin it for the rest.  That’s the case here.  Sooooo sorry if I upset anyone with my requests. 

Today was another confusing day.  Chloe’s doctors are all puzzled with the fever that she just can’t shake.  It rose to 105!!! earlier this evening and it took ice packs, cold wash cloths, Tylanol and IBProfin to bring it down to 99.  She was feeling pretty puny earlier.  We did get her out to the garden for about 10 minutes in a wheelchair.  She was pretty worn out when we got back upstairs.

As the night grew later she started feeling better.  Movie night was not as much fun as it could have been but after the movie she started to get her spunk back.

They have stopped all foods at midnight in preparation for her MRI and spinal tomorrow.  It should happen around 1 PM.  This is to see if there are any pockets of bad stuff around her operation site. 

She was able to eat some of her shepherd’s pie tonight and shoved it in her mouth with Twizzlers.  Quite the diet this young lady is on.  She also had some fruit.  That is her favorite which is just fine with us.

You should have seen the smile on her face when Dana handed her the Twizzlers.  It was worth the price of admission.

She also had a pretty good smile while talking to her dad tonight.  Dave called after she started to feel a little better so she was able to speak to him for about fifteen minutes or so. 

I like how she looks but we really need to find a reason for her temperature spikes.  They have to go now.

Blessings to all of you.  And please accept my apology if I hurt any feelings this morning.  That certainly isn’t my intent.  Ron

Tuesday, July 1st…. 1st Edition:

Hello everyone.  Here’s an early to do/ not to do list that bears repeating.  Please don’t take this as a hand slap.  It’s just some guidelines that really should be followed for anyone going through a life-threatening situation.  Keeping the right people in mind is all important.   

The family is very fragile right now so that’s why I need to set some guidelines and ask that you honor them, please.  In order to keep this short I won’t be giving many reasons.  If you want the reasons please feel free to email me with your phone number and I’ll call you back.  Or, if you have my cell phone number, you can call me directly. 

Not to do:

1. Unless you have to please do not call the room.  There is way too much going on in there during the day that the phone is a distraction from what matters.  I know you are concerned and want to help.  You can help most by letting Dana breath.  So, unless she has asked you to call about something specific, please refrain from calling. 

2.      If you do get the opportunity to speak with the family there are things I ask that you remember.

1. Stories about someone you know who had a similar situation are inappropriate.  Please don’t bring them up.
2. This is all about Chloe.  Your own stories may be very relevant to you but they can be very upsetting to the family. 
3. We know what the effects of treatments are.  We would rather not have anyone telling us that this will really be bad or anything of the sort. 

3.      People like to share their miricle cure in these situations.  If you stand on one foot in the middle of a pasture full of green sheep you will have the gods of wool protecting you from all evil.  Drink this water and you will be cleansed of all toxins, thus making your body the ultimate healing apparatus.  The list goes on and on.  Unless you have a PHD in some form of medicine please keep the “out of the box cures” to yourselves.  If you can’t do this then just email it to me, in a very non pushy way, and I will investigate the possibilities.  Believe me, I’ve heard most of them. 

4.      Please don’t drop by the hospital room without first clearing it thru the website.  I monitor all emails and respond to those that I feel need a response.  I can’t respond to all of them.  There are many, and most every one of them has been great. Visits are welcomed but just check first unless you’ve been asked in advance.  Thanks.

To Do List;

1.      If you have an idea for fundraising I would be happy to hear it.  I will then put you in contact with an organizing body to set the ball rolling. 

2.      Send a nice card to Chloe with a cheery message.  Be upbeat, that’s what we want and what will help her spirits and healing most.  She knows what she is going through. 

3.      Pray for miracles.  Chloe needs them.  The family needs them.

4.      Before you speak with a family member please consider what you say carefully.  Everyone is fragile at this state.  Upbeat, happy talk is much better than downtrodden soulful pity.   

All in all 99.9% of everything everyone has been doing has been wonderful.  That .1% can ruin the moment though.  Even those, however, are well meant.  Blessings to you all!  Ron

Monday, June 30th:

Here’s an early update for you today, as I have had to miss a day at the hospital.   

The story of her new found wealth from the garage sale needs some clarification.  I handed her an envelope and told her it was payday.  She must have been feeling a bit puny because she just said thanks and laid it by her side.  In about 10 minutes she couldn’t stand it anymore and feebly opened the envelope.  It was fun to see because she opened it the right side up.  She started counting the bills, “five, fifteen, thirty-five, HOLY CRUD!”  The hundreds showed up and she thought she won the lottery.  Three hundred and something from the sale went for her. 

Then the neat thing came out.  She took two of the hundreds and put them aside.  “Those are for my bills.”  One more put aside, “that’s for my savings.”  Two twenties next, “that’s for giving.”  The remaining some thirty dollars, “this I can spend on myself.”  That’s Chloe for you. 

Today was very busy for her.  She had physical therapy, a walk to the garden and sitting up to eat.  Pain, nausea and fatigue filled the day on and off but at a reduced level.  Her doctors are “Puzzled” by the fever.  It’s unusual for the antibiotics to cause a fever but they can.  Dana pointed out she had a very unusual tumor as well.  It could fit Chloe’s M.O. easily.  They will reduce the pain meds tomorrow to see if she is okay on less.  I did notice she is moving her neck a lot better the last couple days.  She’s very proud of that. 

They have decided to schedule her for another MRI on Wednesday to see if there are abscesses or puss pockets at the incision site.  While she is asleep they will do another spinal tap to see if the white blood cells are still sky high, as they were the last time they checked.  Her temp went to 102 today so something is definitely going on that we don’t want. 

Over all it was a so-so day for her when she was asked.  She didn’t get sick.  The tube stayed down.  She got a lot of exercise.  And she experienced some sun for the first time in a week.  We just need to get the fever turned off!!! 

On the Ivey front it looks like the antibiotics may have helped her through this.  She was walked by Jennifer this morning and seemed to be able to pass urine.  We’ll still watch her.  Thank you Dr. Alicia of Dove Lewis.  We highly appreciate all the help, empathy and concern you showed us yesterday and late last night.  Blessings to you. 

On the other scary note it looks like there are going to be quite a few bills that won’t be covered by insurance.  I know there are many who want to help in one way or another.  Please feel free to email me through the site with your ideas and I will get you in touch with the early stage of a committee that will oversee all of these.  This is going to be a challenge.  I wish we had started using the Dave Ramsey method a long time ago!!!!

Sunday, June 29th:

When Dana showed up at the Chloe Benefit Garage Sale this morning I knew the face of distress.  Dave was able to spend the night with Chloe last night so Dana spent the night at home last night, with Ivey, her sick dog.  Four years ago Ivey underwent emergency surgery for a Kidney Stone blockage.  She is now showing signs of the same thing. 

Dana holds the worry of Chloe, who has regained her temperature and nausea, and their best friend, Ivey, who is fighting her own battle of survival.  It was too much to bear for her today I could tell.  She sat with me at the sale for about an hour and then just couldn’t take it any longer.  She needed to get back to the hospital before she was unable to even drive. 

A friend had volunteered to check Ivey later in the day to see if she was able to pass urine.  This is the worry.  If her bladder blocks up it’s a call for emergency surgery.  If it’s Sunday that means going to Dove Lewis animal hospital, and a much higher bill than her family Vet.  In the face of the astronomical bills she is facing from Chloe’s medical tragedy and lack of time at work, one more major bill would be unbearable.  She left extremely beat up over this. 

I jumped on the phone to Dove Lewis.  The first person I spoke with agreed to take the website address and pass it by a doctor.  They would ask the doctor to call me. 

Then I jumped on the computer and emailed everyone I could find on their website. 

About an hour later there was a message on my phone from a nice doctor at Dove Lewis wanting more information.  After some telephone tag I was assured that Ivey would, at least, be assessed if we needed to bring her in tonight.  Later, at the hospital, I received another call stating the Executive Director was getting involved.  Although they wouldn’t say for sure I feel confident we have another answer to a prayer.  I’m sure it has something to do with all the years Dana volunteered at the Humane Society and that she is a former Dove Lewis patient/mom.   

After speaking with Dana I found out Chloe had a bad early afternoon.  She vomited so violently that the tube came out again.  This meant worry for Chloe over inserting another.  The decision was to go with a non-weighted tube and place it in her un-enflamed nostril this time.   

Chloe had a very hard time accepting the news but did what was needed of her to get it placed.  Dana was right with her and they watched the Wizard of Oz to take her mind off of everything during the procedure.  She says it didn’t work.  She was well aware of everything, although the procedure is much easier on her than the weighted tube. 

A few more medicine tweaks and she had a better evening.  In fact, when I arrived and handed her the envelope from the garage sale she saw the money and had a huge Chloe smile.  She had never seen hundreds before!

We spent some pretty good time together.  I brought her cherries, blueberries, red grapes, a couple apples and some red raspberry Snapple.  She loved it all. 

About 10 pm she started to feel a little squeamish but they were right on top of it.  She got over it quickly but the meds made her pretty drowsy.  I left after she fell asleep. 

Her temps were up to 103 and down to 99.5 so they are all over the board.  Her heart rate raced to 200 during the vomiting.  She has a lot more definition in her face now but I still don’t see a difference in the body yet.  That may be because I see her everyday.  She’s up to 44 pounds at last count.  This is better than the 38 she came in as but a long way from acceptable.   

Keep the high watch up and running.  I do believe fully that it works.  Blessings to you all! 

Saturday, June 28th:

This roller coaster ride is not any fun! We get good news and then things go south really quick. The temperature and nausea is back. So is her lack of interest in doing anything. It’s a very depressed sense we have been seeing in her lately.

Although the nurses and all of us tell her she is doing better I don’t think she has any belief in it at all. Then she hears a little tidbit that she may be facing another surgery in the future and she completely backs away. “I never want another surgery, ever!”

I can’t say as I blame her and I would have to be convinced beyond a shadow of a doubt that this was the way we should proceed before I’d feel any comfort around that decision as well.

Chloe had a rough night and morning. The nurses were slammed last night with oncology kids and their beeping machines. So Dana was Nurse Mama most of the night. In the morning Chloe vomited again. One step forward, two back.

The nurses got her up a couple times today for short periods. She’s required to sit in the chair even if she won’t be eating the meals that are brought to her. She needs to be upright to avoid pneumonia. That’s all she would need.

I wasn’t there today so what I have been told by Dana is what you will be getting. Dana finally was relieved of duty at about 3:30 pm by Aunt Laura. Dave takes over at 10:00 pm and Dana may just get a good night’s sleep tonight at home, with Ivey. She fell asleep on her hammock earlier and slept three hours!

All in all the day for Chloe was a mix, but more frustrating than not. We need her temps to go down, her food to stay down, her pain to go away and for her to start eating meals rather than just getting her nutrition through a tube in her nose. Benign was fine but the remaining tumor is still in the worst possible place it could be. This may be what’s causing the continued problem, we just don’t know. We do know it can’t stay there and we will need to find a way to get rid of it for good. So, ramp up the prayers, seeing her brain stem clear of all things that don’t belong.

Blessings!

Friday, June 27th:

Hello all, Dana here with an update.  Its Friday, June 27th and I know this because Chloe asked Daddy to write the date on her board.  This was helpful!

The name of “Fred” (the tumor) is medically speaking: Juvenile pilocytic astrocytoma (glioma)

Chloe’s first decent day came yesterday as she had a reprieve from the high fevers even though its still hitting around 100.6.  She and I went down the hall to the starlight lounge (okay so this is a little theatre created by Hollywood video complete with big screen/velvet red curtains/comfy red leather chairs and twinkling stars on the ceiling) about 845pm last night and we sat together in a chair per her request.  This tells ya how little SHE is.  We watched the last of the film, Nancy Drew.

For me this seemed a HUGE deal.  It showed an interest in life again.  We stayed up till the last of the medical routine was completed, around 1:00 a.m.  The reason for this is her antibiotic schedule.  Harold (the IV pole) beeps when the antibiotic is near end, then beeps again when it’s ended.  I’ve learned the button routine on this pole far to well for a non-nurse.  Our best window for sleep is from 1-4am.  Chloe said this first thing, “I got ALL my sleep last night”  and I can believe that.

The doctor’s huddle this am gave us the news that we are still in the hospital into next week.  Chloe still has some other hurdles to cross.  They are really careful here.  And while I’m mentioning my newest family (the medical team of docs/nurses/child life experts/housekeeping/social workers and cafeteria folks) the words THANK YOU to them seem to have taken on a new meaning.  Love is alive here.  I have amazing new appreciation for nurses.  They work 12-hour shifts and still are on the ball, kind and loving.  Always asking if there is something they can do for ME as well.  My hat is off to you ladies and gents.

I also want to thank my place of employment for the incredible gift of time away with nothing other than we miss you and you have a place to return to…. take care of Chloe and we’ll see you when!

The future treatment plan is still a bit vague.  What I understand per this mornings huddle is we will wait 3 months and do another MRI.  Another surgery is not out of the question.  Chloe heard this and piped up” I never want another surgery, ever”.  It’s still her best chances, the doctors say…to remove ‘Fred’ entirely.  They aren’t speaking about radiation or chemo at this time.  Something changed there and I don’t know what.  Perhaps it’s the risk of radiating and causing another tumor, besides Fred.

I had a chance to check out some books on the subject of childhood brain tumors. They are still fairly rare.  Only about 2,200 of them in the U.S. per year and about 3,400 combined brain/spinal cord tumors.  I got this info from a book from 2007.  

So now our wish is for Fred to shrink and shrink and slough off.  Hey, we’ve come this far…why not ask for more?

For all of Chloe’s friends, I do want to say how amazing you are.  She has been looking at each card and note. 

I do think it’s appropriate to end with this.  Chloe has 2 other friends who I won’t mention as I don’t have permission but the three girls created their own Harry Potter Club.  Chloe plays Harry. The other day while in PICU, we received a card from Chloe’s friend and it was the 3 of them…hand drawn as Harry, Hermione and Ron.  Underneath were these words which I love, adore and will keep tight always because I know it to be true…

“Friendship is the most powerful spell”.

Fourth graders ROCK don’t they????

Love and Light,
Dana

Thursday, June 26th: Two weeks from the horrific news.

Today started out like last night ended, with nausea.  Then the entire team got involved.  Chloe needs to move more was the word from the medical team.  So up she went, into the chair.  It’s one thing when Mama says to do it and another thing when the big bad nurses say she needs to do something.  Think she’s got Mama figured out? 

The Doctors told Dana this morning that the Mayo Clinic had requested a second sample of the tumor on Monday.  The results would be called back and then the written report would follow the next day.  We waited but didn’t hear anything.  It probably would be after 4 P.M. or early tomorrow before we heard anything.  That was the word.   

The plan for today was to get Dana out of the hospital so she could have pizza lunch with Colin and me.  At 11:30 or so that happened.  Dave and Ramona spelled us for a much needed breakaway from the hand sanitizers and polished linoleum floors.  

The three of us had the full buffet at Papa’s Pizza and it was good.  Dana even got the kind of pizza she likes most.  A little worried about the tomatoes though… 

Colin and I dropped her off at the hospital at about 2 P.M. so we could get back and set up for the all important neighborhood garage sale.  Not that we need to sell anything…. 

Dana called about 5 P.M. while I was outside setting up.  She said, “are you ready for some good news?”  She likes to ask the obvious. 

The Mayo Clinic had called with their report.  The best news would have been that this was all a dream and that we were to wake up now.  Well, we didn’t get that news.

Benign! Benign!  Benign!

A Grade 1 Glioma, not Cancer!!! 

That was the best news we’ve had since coming here.  This is the tumor that is most survivable.  This is the news that radiates hope.  This is what we were waiting for and what I certainly believed we would hear. 

Now the focus will be on her nutrition and getting rid of any infection that is still hanging on to her.   

Her temperature has been down for two days now.  Not normal, but not scary either.  Her energy level has been in the basement though.  Dog visits tend to bring that up, however, she didn’t want a visit today.  That surprised me. 

Dana will stay another night with her.  Dave and Ramona will be back for a visit tonight after work.  Susan McKey from church had a visit with her today.  Susan is the one who arranged a visit from Blaze the dog.  She was amazed how tired and just plain worn out Chloe was. 

Colin is with me tonight.  He is doing okay.  His cold getting a little better. 

When I asked him what he perceived was going on with Chloe he told me the facts that he knew.  I asked him if he knew that in his heart or just in his head.  He said, “just in my head.”  So I don’t think he has fully absorbed the seriousness of the situation.  Maybe it’s a defense or maybe it’s just being 13.  He seems to be doing okay for now. 

So let’s all pray that this is a turning point and that all the days following will show improvement in her quality of life.  This is something she just has had none of for quite some time now.