ChloeWatts.com

Wednesday, Aug 6th:

Happy and looking Great! That’s our Chloe in her most recent posture.

Last night we went to a neighborhood potluck and had a ball. It’s hard to express the feeling I got from seeing Chloe re-meeting all her little friends. It was old home week for her, and these kids just love to be uninhibited with their questions, and Chloe with her answers. She had not seen any of them since before the surgery.

Chloe was the star with the scar, the really cool scar. She said, “I’m officially Harry Potter now” upon showing some of her schoolmates the back of her head. The accent also belongs to her. It’s quite fun you know…

This was the perfect picture of a vibrant nine year old. She was running and playing, swinging the swings, teetering the teeter-totter and sliding the slide. The grub wasn’t bad either and she had her share. We spent a couple hours there, at least, and then went home with her twirling her NG tube line the whole way. Life IS good!

This morning she chose to sleep in. Wonder why? But once she was up, at 10:15 am, she was up. She came outside to water the plants… and me, as I worked on thinning the cherry tree. Of course, “oh, did I get you?” was her line of choice when she ‘accidentally’ hosed me.

After the changing of the guard, Dana coming home and me going to teach lessons, Chloe, Colin and Dana went to the reptile show. Apparently this was a monstrous hit. Chloe told me earlier that the last time she was there she held the tail of the python and, “I fell in love with it.” The tail I asked. “Yea.” Well, today she got to hold the head so I’m sure the love was much better.

The presenter took a special liking to her and spent extra time after the show going over a variety of things that interested Chloe. He told her that anytime she sees him again he expects her to come up and say hi. There’s no wondering why she gets this attention.

Here is the amazing part of this adventure. While at the show they ran into Dr. Smita Tomkoria, Chloe’s primary doctor, and her young kids. It turns out she lives very close to the house. Seeing she had young kids answered a lot of things for Dana. She could see why Smita was so emotional when telling Dana the terrible news on June 12^th. I’m sure it was very uplifting for Smita to see how well Chloe is now doing. She even answered a medical question Dana had for her. Halving the meds is a good idea.

So that was a two-day quickie blog. There isn’t a lot to mention medically about Chloe at this point in time. I know so many of you are asking to be updated daily because you really care. That’s wonderful and I will keep this going as often as possible. There will be days that we won’t get on the blog for one reason or the other. My thought about a missed day should be for you to consider the age-old saying, “no news is good news.”

That’s the only news we are accepting thank you very much. And, thank you very much for all your love, support, prayers, and caring. We fully appreciate you.

Blessings,

Ron

Monday, Aug 4th:

Chloe was interested in writing this for herself …….until she got sidetracked on unwrapping a small snow cone machine.   

Well there you go.  It’s all about the food, folks! 

We have great news.  We, (Dave, I , Chloe) saw a dietician today at Legacy Emmanuel Hospital and her recommendation after seeing the numbers and Chloe’s appearance and food journal was a match.  “Chloe, I think you are doing great!!!”    

Keep in mind Chloe checked into the hospital at a weight of 38lbs.  Today, she weighed in at 52.8.  Perhaps this is the last time we’ll put a number to this, as it means nothing without seeing such a physical energy change.   

With results like this we were informed to reduce the additional feeds, (cans of food put through her nose tube), to just 8 hours (at night).  This is a reduction by 1/2.  She is on her way. Another appt is going to be set up with her regular physician in 2 weeks to take the next step. 

Chloe painted her toenails gold tonight and her fingernails silver.  hum………… 

There is still such sadness surrounding the death of Grandpa Nick, (Chloe called her best friend today and told me later, “she gets it” regarding the loss), and I would suspect there will be an unfolding of this for some time.  I do acknowledge and am grateful for a moment we had last night as I searched for a phone message for Colin and I came across a long phone message from Grandpa Nick…for Colin on his birthday.  Nick sang happy birthday to Colin, as was his tradition for all of us on our special day.  It was so happily sent with joy and his usual…give everyone hugs/tell them I love them and make sure they reciprocate.  Colin said to me as we bawled…Lets save it for all our birthdays!!”  Of course! 

When we went to our dietician appt today, we, on purpose found Dr Norwood, (per Chloe), and he came out and spoke to her for several minutes.  His first reaction was “Wow, you look good, you’ve gained weight haven’t you?”  They have a special bond.  She didn’t quite have the gumption to tell him of his new nickname, per her,  Dr Tonguewood.  (see photo gallery please…..I think he has a strawberry in hand and this is a good day on Chloe’s behalf, while in hospital . He is the type of Doc to do a silly thing for his patients’ sake.  Yes, Some docs really ARE the bomb) 

I know we were asked today more than once, what are you doing this summer?  Any trips planned?  I guess summer tried to slip away.  We have just begun to know it and this is okay in light of what we lived.  I know we appreciate sun more than we did before.  I know we value love more than we did.  Perhaps we don’t know what lies ahead, if we ever did.  A trip?  Sure………..we took one, not one we wanted to but one we learned from.    

Today, Chloe decided to put her experience into a research system.  She told Dr Norwood” I don’t want anyone to go through what I did, especially the pain”.  Today, she became the future of children who WON’T have to brave what she did.  She is registered into the Pacific Northwest Oncology Research system and the National system.  We could be contacted in the future for details of her diagnosis and treatment.  She had a complex recovery, which still remains a mystery to medical science in some regards.   

Who knows a hero?  You do.  And her name is????? 

Love from The Mama, Dana

(Chloe proofed this for me and ok’d it all)

August 3, 2008 “Say ‘hello’ to Chloe herself!!!!!!!!”

Hello everybody out there, reading this blog of mine. The one that I am writing, right now. Incase you didn’t know I, Chloe, am well enough to write this blog. Thank you SOOOOOOOOOO MUCH for putting me in your prayers! I’m feeling better than I have in years!

Though, on the morning of August 1^st, my grandpa had collapsed and died. We (as in my brother and I) were told later that day, because my father had to go sign some papers and he didn’t want us to worry about it while he was gone.

It was a huge loss for the whole family. We will miss him dearly, but he can now rest in peace forever.

I have nothing else to say.

Yours truly,

CHLOE WATTS!!!!!!!!!!!!

AKA Harry Potter

Friday, Aug 1st:

Chloe and Colin were to come home today from Dave and Ramona’s house, however, there was a surprise.  Jordan, their stepbrother from out of town, dropped by before going off to college.  The kids just adore him so they asked to stay until Sunday.   The ever accomodating Mama agreed.

The kids had a great visit with their grandparents and finished up the early stay with movies in the park.  Even with lots of popcorn and cotton candy Chloe did well.  My stomach would have complained a bit after that but hers was only a little bit agitated.  One more step forward. 

There is an eating diary being held so that the information can be given to the dietician on Monday.  It will be great if they step the continuous feeding down a bit more.  Chloe definitely wants her own food.  Anyone wanting to donate grazing foods to either household for her, while she’s wherever, is welcome to do so. 

Chloe continues with a pretty good quality of life and is doing all she can to bounce back from the surgery and long hospital visit.  The family is also doing all it can to regain some “normality” and get back into the necessities of the daily grind. 

So many people have stepped up and offered support and well wishes.  Everything that comes our way is sent from the heart.  At one point I felt I needed to bring up some suggestions of how to approach someone going through a catastrophic illness.  This was the result of some who just were unaware that what they said may just be taken or heard in a hurtful way.  It seemed to do well for quite awhile.   

Although Chloe is showing every sign of moving forward out of this ordeal, it’s still a very serious time, and will be for a long time to come.   

WARNING… WARNING…WARNING…. RON’S SUGGESTIONS FOLLOW…  YOU CAN BAIL OUT NOW IF YOU’D LIKE. 

In my past experience it was very helpful when people followed a simple to do or not to do list provided by our support group.  I’ll try to paraphrase it for you.  It may just make communicating your feelings a little easier in this and other situations. 

To Do:

1. Feel free to treat your friends as you always have.  This is a time for you to act normal.  Normal is comfortable. Invite them to do things you would have done in the past.                                              
2. “I can’t imagine what you are going through.”  (Even if you can.  It goes over better than “I can imagine what you’re going through.)
3. “You have my full support.  Please let me know if I can do anything.”  (Only if you are sincere.)
4. “You are doing a great job.”
5. “I’d like to (fill in the blank)  for you.  When would be a good time to do this?”  Be specific about what you want to do for them.  Walk the dog, mow the lawn, clean a bathroom, etc.  It’s easier for them to say thank you than to ask, “can you do such and such for me.”
6. Anonymous financial help is ALWAYS A BLESSING.
7. “I’ll pray for you and see you all as Healthy, Happy and Whole.”
8. “I believe in miracles and you are the type they are delivered to.”
9.  “You are looking great!”  (Not if they are looking terrible though.)
10. “Are you taking care of yourself?”  “Let me help by doing……” 

Not to do:

1. Please don’t share your story.  It really doesn’t do anything to console.  The Uncle Harry stories don’t compare with this one, whatever this one might be.
2. “I’m glad it’s you and not me” has to be at the top of this list.
3. “I can imagine what you’re going through.”  (Good chance you can’t.)
4. “I’m so glad my kids aren’t going through this” also is right up there in the no nos.
5. Along that line of thought. “I don’t know what I’d do if my child ever had…..”
6. “Let me know what I can do to help” is useless unless you truly mean it and can come through on your offer.  If you can’t help that is just as good.  Being support by being a good friend means a lot.
7. “Everything happens for a reason” is not appropriate.  Don’t expect this line to go over well with someone going through the worst thing in his or her life. 
8. “I’ll pray that whatever happens is for the highest good.”  Again…. What does this offer a person in a terrible situation?
9. “Doctors don’t know anything.  They are just plain stupid.  You should do fill in the blank.”
10. “I’ll tell you what causes this…”  (And Al Gore invented the internet….)
11. “I have a cure for ….” 

Everyone knows what to do or not to do if they just think a minute before they speak.  This is one of the best pieces of advice we found.  Let the other person speak… then breath a few seconds… collect your own thoughts… and then respond appropriately.  They don’t require a rapid reply.  They aren’t going anyplace.  You will find that this will help so much better than if you accidentally say something and get a guarded look back after saying it.  Then you have to stumble around while you take your foot out of your mouth. 

If any of the things on the list hit home PLEASE don’t take offense.  Nothing is pointed at any individual and nobody is being blamed for saying anything out of line.  This is mearly a guide that I found helpful before and would be helpful to us now.

Again, you all have been so nice and supportive.  You have been a huge blessings to all of us going though this.  We hope you never forget your part and will be with us forever. 

Blessings,

Ron

Wednesday, July 30th: Kelly’s Birthday (Ron’s Oldest)

I’d like to be able to say I’m once again clear on the dates, but I’m not.  Still checking the calendar or others for confirmation on this.   

During my lunch hour, I dropped by to ‘visit’ my kids.  Somehow this doesn’t sound right but this is how we live.  Colin and Chloe were at Annette’s today for Chloe’s ‘first’ PLAYDATE with a friend in a long time.  Colin was with his best friend, Spencer also!  Yippee!   They’ve been at Dad and Ramona’s house having a great time all week.  I’m looking forward to them being here for the weekend.  Ivey, our dog would like someone other than the cat across the fence to ‘arf’ at. 

I found Chloe and Molly swinging from a homemade swing in the open-air garage.  Was good to witness the smiles from two friends who knew before we did, they were destined for this day. Chloe, as per the other blog was twirling the NG tube like a baton over her head and around her.  Later this old saying hit me, one we all know.  When life hands you lemons, make lemonade.   Oh my goodness, rather than hunching over having a pity party this child is twirling her tube like a toy.  If we could all make friends with our nemesis like this, Peace would be our reality rather than a hope for change.  Imagine! 

In speaking to Chloe I am still more than concerned about what she tells me about her tummy.  It’s kinda like nausea, kinda like pain…it goes away but lasts a long time.  Okay, call me over protective but I’m thinking this is still not ok. I have asked Chloe to pay attention to perhaps what makes her tummy feel better and for that matter, what makes it feel worse.  She did say she is slowing down on eating (by mouth). I have a feeling if I am able to contact the dietician before the weekend, she may suggest something before our appointment next week, which may give Chloe some kind of relief.   

These are good days, yes.  And yet, I want the moon.  I want no nausea, no pain, nothing short of ‘feeling groovy” for this child of ours.  Why stop now?   I want Colin’s 13th birthday back too.  So okay, we don’t always get what we want, but until we ask…..or ‘re-create’ what was lost, then there’s no room for complaining.   There’s simply, no time for complaining either.  

On that note, I think I found the new family theme song tonight (we only have about 10 of them…) I first heard it while Chloe was in the hospital ‘cause I tried sneaking this young guitar player into the PICU (pediatric intensive care) so he could sing it for Chloe.  That didn’t work.  It was a ‘drat’ moment and yet, this song inspired me that day…. Today, on Kink radio, they not only played it but also announced the name of it.  I’m Yours by Jason Moran (sp?)  I was in the hospital calling it the ‘Love’ song.  Chloe will love it.  Stay tuned, she’s a showstopper.  As if you didn’t already know. 

Love and all that, 

Dana

Sunday, Monday, Tuesday, July 27-28-29

It’s our first rainy day in quite some time so maybe we all will get a little, well deserved, down time.  In fact, Ramona’s parents are with the kids today and there are no plans to go out for anything.  It should be a very nice day at that house with Videos, Water Fights, X-Box and Food.  Humm… sounds like a plan to me. 

Chloe, Colin, Dave and Ramona had a great time at the coast I hear.  The water was even warm enough for them to spend a little foot time in the surf.  And the sun did come out, in-spite-of the weatherman.   

The other day poor Colin decided walking barefoot was the cool thing to do as a brand new teenager.  So he walked up the blacktop road to his friends’ house.  Later he hobbled down with two burned feet, the day before going to the beach.  So he did what any new teenager would do, he popped the blisters so he could walk on the beach and in the surf.  Hate to say it but I am sure I did the same thing around his age.  Had some pretty tough feet later on.  And, as far as I’m concerned, there is nothing better for healing a cut or something similar, than the ocean salt water.  I was raised in Miami.  

Chloe had a bag free day again, well, at least eight hours of bag free.  She is funny.  When the bag is unhooked there is a line that hangs down past her belt.  It’s her M.O. now to walk around twirling the tube like a flapper would twirl her bolo.  She does it so innocently that it just cracks me up. 

When Dana called to speak with Chloe today she found her still in bed at 10 A.M.  That’s a pretty good life of leisure, no guilt.  Chloe said she felt her energy level was coming up but her stomach still feels “un-normal.”  She didn’t want any Zofran to help with it though.  This is a good thing.  She is more and more willing to work through her difficulties rather than just ask for medicine.  Determination Plus!  We will see the dietician next week and be able to give her some good information.  Then we can work on a timeframe to get Chloe off the bag. 

Chloe and I talked about drugs the other day.  She said, ‘no one will ever have to worry about me taking bad drugs.  That has to be the most stupid thing anyone could do.  Why would they want to take drugs they didn’t have to take?’  This little girl has some of the most mature things come out of her mouth you’d ever want to hear. 

This is a long spread of time for Chloe to be away from Mama and she offered that she was a bit sad.  However, this is something that has gone on since the beginning of her time so we are sure she will do fine.  Tomorrow she will have a play date at her adopted grandma’s house, Annette, to visit with her best friend Molly.  They haven’t seen each other since before the hospital visit.  (Why do they always call it a visit?  It’s more like an incarceration.)  Colin may just have his best friend over there also, Spencer.  It should be a great day. 

Friday both kids will be back home.  It’s only been a few days but it seems like a month to us.  I guess the routine was so implanted by the “incarceration” that it will take more time than expected to get back to … aaaah… normal? 

Dana and I had a few normal days.  Dana was able to work a couple days this week and her office did the welcome back dance for her.  It warmed Dana’s heart to have that kind of welcome home.  They are truly a good bunch of people over there.  It’s a family, and acts just like one from what I witness and hear. 

We also were able to get back to the gym for the first couple times in a long time.  It felt wonderful although the rebuilding does take time.  Of course, I extended my parameters a bit yesterday and then we went over to Dana’s place and I proceeded to cut down a half dozen trees… with an axe… as my trusty estate sale chainsaw wouldn’t start.  Needless to say I was on Ibuprofen overnight.   

It was a fun time though.  We had to drop the trees into her neighbor’s yard, with his blessings, so we brought Ivey over to play with the girls, dogs Chloe and Pita, a lab and pit bull.  They had a ball and found every mud puddle in the newly leveled yard. 

Dana is cleaning house and I’m working from my computer again.  She will be off to work this afternoon and I’ll be trying to sell saxophones and get students to fill my docket.   

Chloe and Colin are doing very well.  As I’ve said before, I’m holding the knowing that Chloe is fully on the road to perfect health.  The conversations I’ve had with others lately have shown me that I’m not alone in this belief. 

Here’s a fun story.  Colin is one of the more spiritual thirteen year olds you will meet, but, because of his age, he doesn’t feel it is cool to admit to believing in God.  So, the other day, he was at the house and Chloe was listening to our conversation.  I said, ‘If there was ever a time of proof about the existence of God it would have been the Monday after Black Saturday.’  The turnaround that Chloe made could not be attributed to anything other than the influx of prayers that came forward after my Saturday night blog.  She is living proof there is a God.’ 

With this Chloe lite up, put her hands over her head in a V, and danced around singing ‘I’m the proof there’s a God.  Oh yea, I’m the proof!’   We all had a good laugh over that. 

Thank you for being there. 

Blessings, 

Ron

Fri/Sat, July 25/26:

Chloe has gone mad. Well, not stark raving mad, but she’s back to her old self with her great anger. Yesterday she got mad at Colin, Mama and Me at different times. Her anger is so much fun though because it’s immediate and goes away just about as quick. She sure doesn’t hold on to a beef. There is something to be said for venting.

The two days she was back with Dana were wonderful. She really is doing so much better. To see the quality of life she now has vs. the life she was living a couple weeks ago is so heartwarming.

The doctors have agreed that she can be off the feeds for eight hours every day. The “by mouth” food intake has been unbelievable. I asked her if she could describe to me what was different pre-surgery to now. Food just didn’t appeal to her back then. It was just a chore to eat. Now things taste great and she has desire. Her little body is getting some shape back. Dana told me “she looks like she’s having our baby.” Well…. I wouldn’t go that far but she is hiding her ribs now and there is form back in her arms and legs. Her face is just as it should be.

Last night Chloe sent the signal to Dana that she needed something. A book thrown on the floor is the signal as we are downstairs from her room. Dana was in a deep sleep and dreamed the book noise so she didn’t get up for about three minutes. When she did realize what was going on she went up. Chloe was a little miffed but no real big deal. The next morning Dana’s explanation to Chloe was just perfect. “For the first time I wasn’t scared.” She is doing so well that we are treating her more and more as though she is back to normal.

On that point I will say that we are close. We are all focused on Chloe’s wellness. We refuse to give any energy to the FORMER tumor. It has no power. We will just do our follow-ups and know that all will be good.

We were out for just over an hour today at a couple estate sales. At the last one she started getting a little weak so we went straight home to get some food and fluids into her. It was a quick bounce back. Before we left the house she had turned off the feeds to start her eight hours of freedom. I believe the body was just a little in shock, thinking we were going to starve it. After all, it’s used to being fed continuously. We now know to keep plenty of snacks and liquid with us while we are out.

Tonight we went to Schlotsky’s for dinner. It was a huge hit even though Chloe’s friend wasn’t working tonight. We left word for her that we were there. After a full meal by all of us we came back to the house to wait for Dave and Ramona. The kids will spend the week with them and the other set of grandparents. One good thing about separated families, you never run out of grandparents.

Chloe was concerned about being away from Dana for another week but we assured her she makes the call. If she needs to be home we will make that happen. One exciting thing is that she will have time with her best friend Molly. She has not even spoken with her since the night before the surgery. She is very excited.

It’s wonderful to see her so happy and so determined to gain strength and get her life back. We should all be that strong!

Blessings,

Ron

Dad’s blog. July 24

I didn’t post a blog yesterday out of respect to Dana’s blog yesterday, and other than Chloe being a little down yesterday because Grandma was going home, there wasn’t much to report. We did get word yesterday that the Dietitian approved of Chloe being disconnected from her feeding pack for up to 8hrs per day, as long as it isn’t at night. So, before we took Grandma to the airport, we unhooked her for a little freedom. It’s always tough on a Chloe to say goodbye to Grandma, but she was a trooper and held back the tears.

After leaving the airport, we met up with Ramona for dinner at a little mexican restaurant in Oregon City – she ate half a Casadia and some nachos, then we went home and watched a movie (Drillbit Taylor) and had popcorn.

Chloe was hooked up to the feeds before going to bed, and stayed that way until about 2:00pm today. She had a good appetite this morning (2 bowls of Corn Pops), as well as the rest of the day. She played games with Colin (Skip-Bo and a couple video games) and then got in on another water fight this afternoon. After a spaghetti dinner, we decided to get out of the house, so we went to the mall and then over to Lake Oswego to feed the ducks. There weren’t a lot of hungry ducks, so we decided to have an ice cream snack and noticed a movie playing in the park – they play them free on a big screen every Thursday night! We didn’t stay for the movie, cause we had to get home so we could administer Chloe’s evening meds, but Colin and Chloe decided to take a bag of free popcorn for the ride home…both bags were empty when we pulled into the driveway. Then it was showers and off to bed. All in all, another great day of healing and energy.

Thanks,David

Chloe and more……July 23…From Dana

The news to report regarding Chloe remains twofold. What I, or others report are from a unique and close perspective.  We all have yet to understand how Chloe is processing, recovering and uniquely wondering what all the fuss is about.

I can tell you what I know for sure. This child brought an amazing awareness to four people who otherwise would agree on nothing.  I bow to this child of ours.  She came through us and does not belong to us.  She is of the world.  I remain steadfast in her healing.  And this means the four of us remain on the same page, of the same book.  Can we do this?  I stand in a yes.  She did the work, now lets be humbled and move towards her best healing.

Colin said to me “Mama, I think if you want to be friends with Daddy, you gotta be friends with Ramona”.  I so loved this observation.  Why not?  I’m open.  I saw Ramona’s gifts in the early days…and I did say to her, “Thank you so much for providing the autograph book for Chloe’s hospital doctors, nurses to sign.  I can’t tell you all how instrumental this was.  We learned the nicknames of her doctors/nurses and it made such a strong connection.  Keep in mind that Chloe was in the hospital for weeks. We made new family there.  Many nurses cared for her days on end, Nights on end. Thank you Ramona for the book, for taking on extra shifts for Dave to be there in critical times.

Grandma Lee.  Thank you for you.  You were here during a critical, private time of healing.  I had some rest time because you were here and I knew all would be ok.

Dave.  We won’t lose our open communication because Chloe opened this door wide. Don’t be so hard on yourself.  I’m not.

Sandy. You own the website called chloewatts.com, and for your vigils HERE at life changing moments, I kiss your feet.

Ron.  I named you Batman but you already knew.  You love her and I so adore this and more about you.  The blogs kept others in the know and the healing took place.  You’ve no idea, if the save her life cards could be dealt, you’d be a wealthy man.  I know how much you gave.  Only I know.  But that’s okay with you, because you are batman.  He, who does things in silence with no 2nd act or applause.

Kevin and Laura.  Your quiet presence at the critical times; During Chloe’s surgery, her MRIs, filling in at the hospital to provide me with much needed breaks, just your ability to see what was needed ahead of time and providing.  Staying on top of things.  I love you both.

There is an unsung hero.  And Him, I’ve been thinking about for days now.  My nephew Jeremy.  He created this website, Overnight!  He created a beautiful, newsworthy, forward thinking place for us all to meet.   I believe and I know, if save her life cards would be dealt,  he would be amazed at the amount received.  Jeremy, stop being humble. Nod in the knowing that you made a difference.  YOU SAVED HER LIFE TOO.  You put people together in one place to send thoughts/notes/prayers/love.  You made it happen.  I so love you. 

Regina.  My niece.  You FELT it.  The urge to BE nowhere else.  You made your life different because you loved Chloe.  YOU and Jeremy and Kevin and Laura made Colin’s 13th birthday count. You cleaned my house when I didn’t care.  And yet, I care now.  You left it well.  You made LIFE count here.  You know the girl-power of our family line.  I so adore you and love you.

I weep as I write this, I do.  And of course I would save best for last.

Chloe was scared, and sad…about yesterday’s doctor appt.  Nothing was resolved about her NG tube.  Today, there were several phone conversations regarding this to feeding clinic personnel, dieticians etc.  I called Chloe ASAP to tell her that she can choose an 8-hour time frame during the day to be unhooked from the feeding pump.  Imagine this. FREEDOM!  I don’t know what the pump/backpack weighs but it’s a small load to carry. Her reaction was “oh I knew”.  As if she was waiting for us adults to get it together.  We have appointments with a dietician/medical director of the feeding clinic to evaluate where we are at and where Chloe wants to be.  I sense the importance of having all of this knowledge in place.  Chloe wants a plan to be tube free.  WE all want that for her.  Keep in mind, however this has been a lifeline.  She ate NOTHING for over two weeks.  And so, bothersome as it may be, the NG tube saved her life as well.

Chloe, yesterday had a hankering for Schlotkys (restaurant in Tualatin) and so I mentioned the possibility of going there when I see her this weekend.  Food, for her is medicine and no matter the craving….strawberry milkshakes from Mikes, Mango smoothies….we all GO FOR IT.

Know what else I know for sure?  Her brother Colin is on top of how to save a life, how to love life, how to sing Christmas carols in July and believe.  He celebrates life like no other.  He made her giggle today as he was following her around while she was on the phone with me, to bug her….that’s good.  That’s normal.  That HAS to be healing to her. So for you Colin, I give great thanks, great love because you and Chloe get it.  You both GET IT.  Nothing else needs saying.

My message is for the children.  You are so beyond we adult types.  Thank you for teaching us to be vulnerable and strong and weak all at the same time.

In Grace,

The Mama

Dad & Grandma’s blog (#2) for July 22, 2008

This evening’s blog has been especially difficult to write, as it’s obvious we have lost sight of how sick our little girl truly is. While visiting at Dad’s house, she is eating three (or more) meals a day, which she hasn’t done in over two years. This morning, she ate two bowls of cereal for breakfast before Ramona and I went off to work. Then, Grandma took her to Fred Meyers to get a new backpack for school…which was an exhausting trip; she was able to squeeze out a joyful smile over her purchase. She was unable to really eat a good lunch today because she was nervous about her doctor appointment today…hoping she would get the news she could get rid of the feeding bags. Yes, she was disappointed, yes, she was hoping she wouldn’t have to wear it any more…because in Chloe’s words, SHE DOESN’T FEEL SICK ANY MORE!!!!

Then, after being completely wiped out from her doctors visit, Grandma, Colin and Chloe went to Izzy’s for an early dinner….because Chloe was hungry!! She got and ate two (2) slices of pizza, a helping of mashed potatoes and gravy, potato salad, and she ate Grandma’s shrimp salad off her plate…and then went back for tapioca pudding and a gooey sweet roll. The two empty plates in front of her in the picture are hers – a sight none of us are used to seeing.

When Ramona and I came home from work this evening, Colin and Chloe were bantering back-and forth over a Playstation II game they were playing (Chloe won!), and then decided to play a game of Skip-Bo, where they continued to banter over who was going to beat who. Yes, her visit to Dads house has been exhausting…because she’s healing from the surgery, and the daily fevers are GONE, and she is having FUN playing like a little girl. There has been some water spilled in our house, but floors dry.

We are proud of the progress Chloe has made since the July 12th weekend … BIG NEWS….CHLOE IS GETTING BETTER EVERY DAY!!! And, after having a sister and brother who have both experienced major head trauma – one being a brain tumor – we have learned that keeping her thinking positive and laughter are the best medicine for her.

We all look forward to hearing from the nutritionalists as to when she can take out the feeding tube. Until then, she will continue to gain the benefit of having the feeds daily, as well as all the food she is taking in by mouth. I hope MY little girl gets better soon, as it would be devastating to lose her after she has gotten so much better.

Grandma is guilty of hearing as much as Chloe heard of the Oncologist’s words. But Grandma is also guilty of explaining to her the reason the doctor will probably leave the line in for her feeds. She is getting 1500 to 1800 calories a day with the feeds and they are important to restore her body to healthy 9 yr old level. The thing I learned from caring for 2 of my own children after brain surgery is that if they don’t have an understanding of what’s happening to them, or a hope of getting better, they tend to just give up. I will not let this precious granddaughter of mine give up.

David & Grandma