ChloeWatts.com

Wednesday, June 25th: (Pictures make it all the way to the bottom.)

How are you doing Chloe? “Miserable.” That about sums up the bulk of her day today. She really looked as Critically Ill as she medically is. It was a day that I’d say she was feeling, ‘oh what the hell. I don’t really care.’ Maybe it was that funky moon last night. I was a pain in the butt all day too. Couldn’t get out of Anger Mode.

No sugar coating going on here but there were some positive things that happened today. Dana was able to get home for a couple hours. She gave Ivey her pill and took her on a walk, took a bath, watered her plants, helped me load the trailer to bring garage sale things to my house. All that and she only broke down once, when I had her thinking about getting her life back.

You see, her focus is all Chloe. Some may not understand this, but I certainly do. I’ve been there, done that. It’s no fun, but it’s necessary. It’s not martyrdom, it’s not grandstanding, or any other thing one who doesn’t understand might label it. It’s a Mama watching over her young, hoping a praying that the boogieman will go away and leave them alone. This boogieman is named Fred. (Chloe’s name for the tumor.) He’s pretty damn scary and very capable of doing harm, ultimate harm.

With as fast as things have changed at the hospital for Chloe, Dana is on top of it all. She learns daily other safety barriers to place between Chloe and Fred. There is one constant watching over Chloe. Sure there are nurses and doctors, but there is nothing more valuable than a conscious, conscientious Mama.

It’s been two and a half weeks. Dana has been by Chloe’s side all but about 10 hours of that time. She deserves a huge credit. Like I’ve said before, this is not about us, it’s all about Chloe… and saving her life!

More facts about today. Chloe’s antibiotics were increased, her laxatives discontinued, pain meds increased a bit and blood draws every four hours. The good thing about all this is that her pain level seems to be a little lower, her temperature is a little lower… even without Tylenol, her system is moving fairly normally now, her blood draws have yet to show anything growing, her sodium is up to the bottom of the acceptable level and she has been getting some deep sleep, although it’s interrupted often.

The latest worry is pneumonia. Because she is so weak and has little desire to get up other than to use the bathroom, she is a candidate to have her lungs fill up. They are on top of that with breathing exercises. Tomorrow we will try to get her to take a walk around the ward. We’ll see.

The highlight of her day was when Jake showed up. He’s a golden Retriever who loves to lay in bed with her and have her stroke his head and ears. She even sat up to brush him for about 3 or 4 minutes. “Dog” of course is “God” backwards and I believe she truly sees that in every dog.

There was a yesterday story that completely blew me away. I’ll share it with you because it shows just how good some people can be, even to those they don’t even know.

Last week I bought a new saxophone from Gary Sugal of Providence, RI. He has his own company and manufactures these horns, which I’m pretty impressed with. Well, if you’ve received an email from me you know that below my name is the websites for my church and for Chloe.

Well, after sending Gary a review of this new horn he went to the website and read the entire thing. He emailed me with his best wishes for Chloe and asked if she was interested in music, particularly clarinet or guitar. I told him she was a fine vocalist, that she liked to play the piano and probably would like guitar at some point in time.

His response…. “I’m sending her a guitar.”

Understand, he doesn’t know me from Adam, much less Chloe. I was amazed and told him so. His reply? “I’m just a guy who read her story and was deeply touched and feel very sorry she has to go through this.” He just felt compelled to help. I can relate to that. He won’t get a dime for the guitar but he will get so much more, inside. It’s wonderful to know that the world is full of good people.

Typing this might just help me get over my anger spurt today. Blessings to you all. Please keep the prayers coming. They are needed much more than anyone can imagine. This is one little person that must live. She must.

I think it’s Tuesday, June24th: From Dana

Everyone deserves their moment. I am unable to imagine how Chloe will describe this adventure in the days to come. For now here is a tidbit I’m okay with sharing.

Late nights in the PICU (Pediatric Intensive Care Unit) are mystical I’ve decided. There is no distinction of time there, not really. (No window there helps this feel factual.)

Two nights ago, perhaps, Chloe and I were on our way to seeing midnight together, when a moment of complete surrender began to unfold. To back up a bit (do I do anything in regular order?) I must admit noises have bothered her a lot here. TV, Voices, beeping sounds from Harold (the IV Pole)) but on occasion she would want to hear lullabies from the CD player I brought in. One night she only wanted me to sing her lullabies. I’m okay with this but not always in the best mental state for recalling all the words.

In fact, a song came to me two nights ago. It’s called Baby Mine (Allison Krause version). I didn’t have the CD with me (I do now) so I began to rewrite it using the following words. I don’t know why I’m compelled to share this. Maybe its for someone out there, maybe for Chloe…could be… for myself, as I just now begin to process this enormous event and the outpouring of Love for her we have received. Keep in mind the characters, which may confuse some of you. Ivey is our dog at home, Harold is the IV pole that feeds/medicates Chloe, Fred is her tumor and the button is her own remote control to extra pain meds when it becomes unbearable.

Baby Mine

Baby Mine dry your eyes
Baby Mine what a surprise (finding out it was a tumor I mean here)
Brave and strong, finding your way
to better days
Chloe of mine

Baby mine go to sleep
I’ll watch Harold, wont let him beep
Push your button when you feel the pain
making your gains
Chloe of mine

When I see you struggle so
deep inside, there’s something I know
You were sent to lighten our load on earth
I’m so grateful you chose me to birth you

Baby Mine try to dream
like you did last night of Ivey , it seems
One more day of feeling this way
On with your life
Chloe of mine

Goodbye Fred, you’re not welcome here
We discovered you, now disappear
No good byes just realize
You must move out of
Chloe of mine

Baby mine thank you for teaching us
to love, forgive and be more unified….

Baby Mine so many care
Helping you here and there
All is well, this isn’t hell
We’ll make you well
Yes baby of mine

Baby Mine don’t you know
you’ll check out of here
and you’ll grow
You’ll know more than ever before
our teacher once more
Now lets head for the door.

Chloe you are my hero. Thanks for you. “Mamaloon”

To everyone else, I don’t know how to say what I want or need to at this time. For now, I trust Chloe is exactly where she needs to be. And for that matter, myself too. There’s a yellow brick road here (yes, REALLY, in the children’s garden) and we all know where that leads. For now we’ll just follow, follow and trust that home is wherever we are.

***********

That was all Dana. I can’t top it so I’ll just sum up what I know of the day.

Chloe woke to vomiting. This was a step back, however, the rest of the day moved forward. Her doctor, number three of the team, saw her for the first time today. It was the second woman doctor of the three-doctor team. I’m told she is a nice fit.

The numbers were up enough to have her move back into her room. Before that she would have to see a visitor. Blaze, and very nice golden lab, complements of Susan McKey’s friends, showed up to boost her spirits. I know it did as she loves these dogs.

Soon after she was moved to her room. We will probably bring her to the garden later but that’s a three-person job. She will need her wheelchair, as her strength is still low.

Tomorrow will be even better, I’m sure of it. Chloe wants to go home ASAP and is working hard toward that goal. She knows you all are praying for her and is very appreciative of that. Keep it up. She will.

Monday, June 23rd:

Here we are, starting week three.  It’s hard to believe we have been here two full weeks tonight and that we are all still sane… to one extent or another. 

Chloe had a good rest last night but started the morning out pretty bad.  Dana knew it was not going to be a good morning after she first spilled coffee on one of our Doctors and a few minutes later christened another.   

The feeding tube clogged due to a certain medicine that probably should not go down the tube.  Unfortunately we didn’t find out how to unclog it until the decision to pull it out came down the pike.  Poor Chloe.  This is a miserable procedure.  They went for a size 10 tube again and after three tries another nurse came in and told them a 10 would not pass through.  Dana had suggested a size 8 to begin with.  Now with the nasal passage so inflamed a size 8 was a chore.  Chloe was the model patient even still.   

Her pain spiked throughout the morning and afternoon but seems to be a little less and holds on for a shorter period of time.  She is on heavier pain meds however.  That could, very well, be the reason for the difference. 

Her temperature is still elevated, although it has been almost normal a few times due to the Tylenol.  It’s a false sense of a turning point when she registers normal. 

The Spinal Tap results are not official yet but she, most likely, has surgical meningitis.  This is a treatable condition, albeit very painful in spikes.  She had an “impressive” amount of white cells in her fluid.  That is not necessarily a bad thing as they are the soldiers fighting this battle.  It does indicate something nasty is going on though. 

This afternoon was pretty good for her.  Her pain level was way down and she was pretty talkative, even though it is at a volume that is hard for me to hear.  She was making beaded bracelets when I arrived with Diane from Child Life.  Diane is a wonderful source of joy for Chloe. 

Another source of joy was a visit by a four-legged friend today.  Dr. Judy approved a visit by a golden lab.  Chloe ate it up.  The dog was actually on her bed being stroked into submission.  Later I asked Chloe if she wanted more of those.  She was pretty darn clear that it was a huge boost to her spirits. 

Dana had to leave to go home and care for her sick dog.  So now she has her dog on antibiotics, her son on his second dose of antibiotics and Chloe on everything under the sun.  You’d think she could catch a break here.  She was back by 7 P.M.  I was hoping she’d fall asleep and stay the night at home.  I was all ready to be there the night.  She’s way too much the Mama to do that though.  I’m glad she is vigilant.   

Just before shift change at 7 P.M. Dave and Ramona came by for a visit.  Chloe always loves to see them.  They stayed through the shift change.  You’re locked in the unit for an hour during the change of shift.  It happens at both 7 O’clock hours. 

When I left tonight she was tuning in Jay Leno for Dana… so she says…  She had an icepack on her head so the pain was creeping up.  So was her temperature.  It’s the time of night for that.  So pretty soon the nurse would help her sleep. 

As I was getting my hug and kiss from Wonder Girl she assured me that she would be getting better soon.  “It just takes a little while, but I’ll get better.”  She speaks the truth.

Blessings to all of you for your support.  Thank you for understanding my need to vent last night.  I’m much better after doing that even though it doesn’t happen very often at all.

Sunday, June 22nd:

We had hopes of Chloe only spending one night in PICU.  We had those dashed as she is just not progressing, as we would like. 

Her pain meds are way up, her temperature is still elevated, she can’t eat anything for awhile yet… only tube feedings, her spirits are shattered, she’s bored out of her skin, her sleep is intermittent and there’s not too much else to report. 

Dave and Ramona stayed last night until about 2 A.M. and Sandy spent the rest of the night.  In the middle of the night Chloe had to be reminded to breath.  After getting some combination of meds she had labored breathing for a while.  Not something we want. 

She did sleep fairly well last night with the extra meds to help.  During the day she was able to sit up and watch a movie with Dana.  She has been for walks only a couple times a day.   

Her incision site itched so much the other day that she actually had it bleeding.  So they have put a bandage on the site to keep her off of it.   We still have an infection someplace and the cultures aren’t complete yet.  

All in all we are all wiped out and ready to see some marked progress in her recovery from this surgery.  Her strength needs to come back and her weight needs to come up before any other treatments can be administered.  

Dana had her first night away from the hospital in two weeks last night.  We had a real meal in a real restaurant.  She actually slept about six and one half hours.  We returned to the hospital precisely at the right time, as was dictated by our director, Chloe. 

Today I made pork chops, potatoes and applesauce.  We ate our meal on real plates with real silverware… in the family room of the ward.  It’s some part of normality. 

Bear with me for a moment please.  I need to vent. 

An interesting thing happened to me at church today.  I’ve been down this road more times than I want to admit.  One thing is sure to happen anytime you are facing a life-threatening situation.  You will have someone tell you of a tragedy where a friend or relative died.  It doesn’t matter that there is no relevance to our situation.  They just think they need to tell their story.  That actually happened to me Friday night.

Another thing happens all to often.  Someone will come out of the woodwork with a miracle cure.  They are so sure this is going to work that they push so hard they push themselves off a cliff.  Today’s event. 

There are two things I won’t stand for.  One is someone, other than God, trying to push religion on me.  The other is someone with the IQ of a doorknob, and, certainly not a PHD anywhere near their name, trying to push a sure cure on me and basically telling me I’m killing my loved one unless I use their MLM product.  Do they really believe I would put the life of a loved one in the hands of a Multi-Level Marketing Scam?  Get real! 

We have far too many people who love Chloe, and know how to conduct themselves around a life-threatening situation, for me to let one bozo make me feel guilty.  I welcome anyone who may want to share some information with me and leave it at that.  But please, No Pushers Allowed.  Chloe is on enough drugs. 

Thank you to all you wonderful friends and family. You help make this journey somewhat bearable.  And thank you, but no thank you to the very few who have not a clue.  It’s late, I’m tired and I had to vent.  Blessings to you all.

Saturday, June 21st:

You know there are roller coasters in the park but you don’t like being on one here.  Chloe went through a lot again today.  In the morning she took a wheelchair ride to the fish tank.  That was a nice break after having one of her huge pain spikes earlier.  While out, she was given a painting kit for later. 

Her doctor came in and said she wasn’t happy with her fluid retention, her temp was still up and that she had low sodium levels.  She ordered another CT scan for her.  Those results came back quickly and they were fine.  However, they felt that she would be best monitored in PICU, so back she went to that unit.  She was very weak by this point. 

Surprise.  She received a lumbar puncture soon after she arrived.  She was given another antibiotic and the current one was increased.  Then she also received an anti-viral medicine as the spinal tap showed a high level of white cells.  “Better safe” was the consensus.  She was well sedated during the procedure and didn’t have any problems. 

PICU is all over her pain problems and taking blood every four hours.  She went through a couple more pain spikes in PICU but they seemed to be of lower intensity and for shorter periods of time.   

During the dinner hour Chloe and Dana were able to call Colin at his 13^th birthday party so sing Happy Birthday.  I’m sure it was tremendous for all of them! 

She is still very funny, especially on morphine.  Her dry humor gives mine a run for its money.  Dana and Ron were able to leave the hospital with her blessing.  Mama is to return promptly at 9:30 A.M. tomorrow!  She was peaceful when we left for the night. 

Dave, Ramona and Sandy are the taskforce in charge at the hospital tonight.  I’m sure Chloe will be in capable hands for sure.  She also has a very competent male nurse to give a hard time to…. Although she is so the perfect patient.

Friday, June 20th:

Chloe and Dana both had a good night sleep on Thursday night. The meds were just right for Chloe it seems.

The day was not a good eating day. She wasn’t interested in anything. The feeding tube was doing its thing though so she was getting nourishment. She is also now on Morphine instead of the Fenol that was harder on her.

Pain spiked a few times today. Once when the Dr. walked in, very good timing. After consultations with the surgeon it was determined this is still within the window of allowable pain. Her little head went through a lot to get to that little tumor and the pain will last a little while longer. Ice packs seem to help.

Her energy was very low today. Dana walked her to the gift shop so she could buy something special. By the time she got there she was beat and Dana had to carry her back to the room.

Cousins Jeremy, Regina and brother Colin showed up today when they were in the gift shop. Back at the room they had a very nice visit. Colin is in a mask though as his cough is still unacceptable.

Ron spent the day working on household chores for both houses that have been put off two weeks now. It was a wonderful day to do that. Then one stop for a short visit to the hospital and it was off to the, all too rare, gig.

The prayers for the upcoming days should be to see Chloe pain free, temperature normal and energy way up. She has been pretty frustrated with everything lately. We get these three things under control and she will be allowed to go home, where the better healing will take place.

Thursday, June 19th, 2008

Wow. How do I try and describe the week we had today?

When I arrived at the hospital, Chloe had dragged Dana downstairs to get a Chi Tea and go for a sit in the garden. It was beautiful out with lots of sun and warmth. I saw a real Chloe smile when I showed up. Then we walked all the way to the room even though she still has her fever.

Soon the doctors showed up for a talk. Nothing new on the Pathology report and we may not even get a final result for a couple weeks. They prescribed a strong antibiotic to start ASAP. There is no obvious area of infection and the culture had not come back yet.

The biggest news came in the form of a get out of jail free card. They told Chloe that she was eligible for a pass away from the hospital for three hours! What a big spirit boost.

At 4:15 P.M. we put Chloe in the car and the three of us, Dana, Ron and Chloe went home to see Ivey. The meeting was crazy but we protected Chloe well. The first place she wanted to go was to her bedroom and lay on her own bed for a little while. Next I carried her outside to the gazebo down in the backyard.

Chloe sat in the rocker and Ivey sat next to her in the chair. Annette, Chloe’s sitter/stand-in-grandmother, came over and sat with her. It was a special meeting for both of them. We gave them their space.

After Annette left Chloe had half of her Icy finished and a slice of watermelon. All was going well… until it wasn’t. All of a sudden she felt sick. We got her to the edge of the gazebo and she vomited. Then again, this time violently, sending the feeding tube up her throat and partially into her mouth. We kept her calm as we called the hospital. It was decided the tube had to come out so I elected myself and pulled it out for her. After that she was feeling a little better. We headed back to the hospital.

Dave and Ramona arrived in time to assist with the re-tubeing. It was a wait of about three hours before the procedure started. This was a very unpleasant experience for Chloe as they only had a larger tube and the nurse that tried the first three times had to hand it of to a more experienced one to get the job done. Dave and Ramona said their goodbyes, as everything seemed to be going better.

Then…. Then the interior wire in the tube wouldn’t come out. It was stuck. Not until the three nurses consulted with PICU and the original nurse who inserted the tube was able to come back, did the wire finally unscrew and pull out.

Dana is wiped out yet again. Hopefully everyone will get some sleep tonight!

Wednesday June 18th, 2008

Last night was just great. Both Dana and Chloe finally got a good night sleep. I didn’t do badly either in the recliner. Chloe’s pain level was pretty good until late morning when she hit another spike but we were able to keep it from going through the roof.

About noon her Oncologist came in and told us the preliminary pathology report had come back. It wasn’t exactly what we were hoping for but it was much better than we could have received. Chloe has a Glioma tumor. According to the Mayo Clinic: “Gliomas can be either benign (slow growing) or malignant (fast growing).” We are facing the “Slow Growing or Benign” form.

This means only that the form of follow-up treatment will be different than if it was fast growing tumor. It also means that the “Outcome is Very Good” per her Oncologist, although there is a long, long road ahead. Chloe will be monitored the rest of her life after her treatment for this tumor. As is often the case, the treatment can also cause problems so they do the monitoring to keep ahead of anything unwanted.

Albeit begrudgingly, Chloe was able to walk the halls a bit today and went to Bingo with the other kids. She spent time with her physical therapists and Child Life Coaches. She gets wiped out easily but she also knows that there is a possibility she will be allowed to leave the hospital tomorrow, pending our ability to control her pain. She will go home with a feeding tube that we will use there. She will also require a port be placed under her skin so that treatment can be administered with as little discomfort as possible.

Thank you for following Chloe’s story on this site. The more of a support team she can build the better. Prayers work, but only if you believe them. We are believers.

Update 11pm:

Tuesday June 17th, 2008

The days seem to merge into one and other. Yesterday seems so far away, however, I know things went on. One thing was pain. Chloe went behind the pain curve and was chasing it all day. Around 5 P.M. she was finally getting it under control. She was able to eat something but the feeding tube is still the main source of nutrition.

Dana was so worn out from trying to keep Chloe comfortable that I took the place of Sandy for the overnight supporter. Sandy didn’t want to leave but there were things in Canada that could not be put off. We assured her we would be in touch at the first sign of trouble.

Bodily functions started to return to normal today which was a huge step toward being able to go home. Now we just need the pain to be controlled easier and we are on our way. Chloe is ready! Her patience level you can see, even though she remains the model patient. There is so much we wimpy adults can learn from her. Chloe St. Theresa…

Monday June 16th, 2008

This was an exhausting day. First off Chloe needed to have a CT scan of her head to make sure she was healing from the surgery. This went well and did show healing.

Next up she had to undergo another procedure to place a central line in her arm. This is a surgical procedure so that she could be transported out of PICU back to the floor. Then she needed three different x-rays to make sure the line, after repositioning, was placed in the right spot. After that she needed the central line that was in her neck, removed. Next was the IV in her arm that needed to come out.

She was finally moved into her room on the “school age unit” at about 5 P.M. She was wiped out as was Dana, Sandy and Ron, who all spent the night with her.

One good thing is that she has been hungry and is eating well while she is awake. She is so frail that seeing anything go into her mouth for nourishment is a joy to watch.

Sandy finally talked Dana into taking the night off as Colin had a Dr. appointment in the morning that Dana wanted to take him to. He has had a bad cough and hasn’t even been allowed to see his sister. He also has a birthday coming up on Saturday and needs to be well for the party on Friday night with his cousins… one of whom developed this great website. Thank you Jeremy!!!

Drs. Dorsen and Norwood both visited Chloe today. They signed her autograph book and were very put off that Batman signed before them. So Dr. Dorsen, the Iceman and Dr. Norwood, Swamp Thing, signed up before Dr. Speed Racer showed up to sign.

We are doing all we can to boost Chloe’s spirits. They are very low lately. She was actually to a boiling point when all was going on today. She just can’t believe we would do this to her although she doesn’t vocalize any of this. She is the model patient and trying very hard to heal from this surgery. She isn’t aware of what is ahead of her for follow-up but we’ll take this one step at a time.

Thank you for all the emails and guest book entries. I bring them to the hospital daily. Also thank you for understanding that we just can’t have phone calls and visitors coming into the room just now. REMEMBER, IT’S NOTHING ABOUT US, IT’S ALL ABOUT CHLOE!