Thursday, January 22, 2009

The Hospital comes Home

Kelly spent a long day in the Infusion Center for chemo yesterday.  We tried to keep her a little longer to run her IV hydration for an extra hour or so since she was getting so sick.  But it just continued when we got home and through the night.  Thanks to our little nurse Shannon for taking care of Kelly last night and changing her buckets!  She is so sweet and helpful to Kelly when she is not feeling well.   Kelly's case manager from CHOC called this morning to check on her, since they were worried about her when we left last night.  Since she still couldn't keep anything down,  her doctor ordered home IV hydration.  We thought this would be nicer for her so she could stay home and not have to go back to the hospital.  But she was really upset when I told her what was going to happen.  She really looks at home as her refuge from medical procedures and treatments and the thought of the hospital coming to her was really hard for her.  I finally got her to agree to it, but it is going to take a trip to Borders where she can pick out any book she wants.  Whatever it takes!  It is actually kind of nice to think that I can bribe her with books.  Not what most 16 year old girls would want so much.


So this afternoon a home nurse came to our house and started an IV for Kelly.  She will have 12 hours of hydration for the next three nights.  Hopefully this will help her feel better for the next few days and she'll make it to school more next week. She wants to try to go to school tomorrow. We'll see in the morning.  Plus she'll still have the IV in her hand.  I can disconnect her, but the IV will be in until Sunday. She didn't want her port accessed because she can taste saline and heparin flushes in her port and that makes her sick.   She would really appreciate any notes in the comments!  This has been a hard couple days for her.

Megan is finishing finals tomorrow, which she will be very happy about.  She was also really excited to find out this week that she was cast in her high school's musical, Singing In The Rain, which will be the first two weekends in May.  She is thrilled to be able to dance in such a fun show.  Kelly will also be involved in the show as she will be working be in the crew!  This should be a fun way for her to be involved with something at their high school.  Anything that helps her feel like a normal teenager is a good thing!

35 comments:

Anonymous said...

Hi Kelly!

I just happened to check your page and I saw an update! I'll be writing you a card soon, but I wanted to comment on here because you will probably be feeling much better by the time the card goes all the way to California. :) I'm sorry you've had a rough couple of days! :( I hope that you're able to pick out a really awesome book. Get some rest. You are in my thought, and hopefully tomorrow is a better day :)

Christine :)

Anonymous said...

Lol...thoughtS...you're in my thoughtS...sorry, it's 12:30 here, and it's been a long night of grading papers :P

Christine (again) :)

Anonymous said...

Hey Kelly!
Wow, you are a trooper! You still want to go to school tomorrow??? Good for you! Congrats to both you and Megan for Singin in the Rain! That will be so much fun! I hope the girls and I can go see it! Take care, and I hope you are feeling good again soon! Debbie

Anonymous said...

Kellllyyyy!
I hope you are feeling better! Sorry to hear that the chemo-crud is getting you down. Chemo is amazing to fight cancer but the side-effects are a bummer!!!! Geoff and you could probably share chemo stories.

You have been a trooper through all the surgeries, MRI, tests, chemos, etc - amazing! So I hope your doctors find some meds to help you with the chemo side-effects that help you feel better.

What book are you going to choose????? Blood and Chocolate? Is there a book we can get you that is on your wish list? We have a few good movies you could watch too!

Will write again soon - keep your chin up - you are the poster patient! We LOVE you! Darla, Geoff, Sophie and Shawn

Eileen Paulin said...

Kelly,
Memories of home IVs. Not fun, not fun at all, BUT think about the alternative... you get to be in your own bed, and at home.
Thinking of you,
xxoo
Eileen
(with Sarah sitting next to me...)

Anonymous said...

Your librarian friend thinks it is awesome that books make you feel better! I think my cute son finally has a day off this weekend and he wants to come see you! Please feel better quick and we look forward to Singing and Dancing in the Rain with you all - We want you to be "Fit as a Fiddle" so we can "Make Em Laugh" and sing "Good Morning" to you! Yes - we are big Gene Kelly fans at this house! We are just real Kelly fans!!

Big Hugs and love you lots,
The Turner's

Shannon said...

Hey Kelly!
I am so sad to hear you aren't feeling good, but I was definitely excited to see that you are going to be in the Singin' in the Rain production!!!!! I made it into the ensemble, and it will be so much fun to be back in theater with you [GAP hasn't been together for such a long time :( ]! Yay! Many prayers and good thoughts are being sent your way from my family and I. Feel better soon!!! God Bless, <3 Shannon Hargis
P.S. I think books are great bribes too...lol :D

Aunt Tracy said...

Hi Kelly!
Sorry to hear chemo is treating you so bad. I can understand what your mom said about keeping your home your sanctuary - but it does sound cozier to be able to stay in your own bed and get to read some new books! What have you picked out? Jake is re-reading Inkheart since it's coming out as a movie. In fact it's been the only think that keeps him away from his drum set! You two share share the same reading gene! I hope your new book is really good and takes your mind off feeling yucky!
Lots & lots of love & hugs!
Aunt Tracy

Anonymous said...

Kelly,
Bummer deal that the hospital has to pay you a visit at home. Great thing is that you're going to get an awesome new book that will totally keep you entertained! Chloe has been having a rough time this week too, we were up on " pill hill" for MANY hours today too. She gets tomorrow off but has to go back again on Monday. Sigh, can I just say that we totally miss CHOC?! We sure miss you all too and please know we are thinking of and praying for you! XOXO
Love,
The Diemer Gang

Anonymous said...

A book? A book is GREAT. But for home IV, I would think of something to add to it, like, hmmmmm,rootbeer float party? Root beer hydrates right?
We'll bring the float.
We think someone should roll that ball around the living room a bit beforehand.
Katie and Heather

Susan D. said...

Hi Kelly,

I'm sorry to hear that chemo is getting you down. I know that things will improve soon, and you're such a trooper. I enjoyed looking through the blog and seeing pictures of your family's vacation. I'm glad to see you are still getting use out of your arts-X-press sweatshirt!

Take care an feel better very, very soon,

Susan (Sophie and Shawn's aunt), Ninon (the tiny,nice dog from France), and all your friends at the Pacific Symphony

Anonymous said...

Dear Kelly,

You, Mr. Wemmick (of Great Expectations fame), and I all have something in common: work/school/hospital are one thing, and HOME is quite another, and we absolutely HATE IT when they mix. Sometimes it can't be helped, though.

Congratulations on the two of you being in "Singing in the Rain." That's a nice show. My sister used to run the lights for her college theater productions. She really enjoyed it.

I hope you got some good books at Borders. They need all the help they can get these days. They're either on the verge of bankruptcy or already in it, I forget which.

Meanwhile, try some ginger to settle things down, and don't forget to tell Murphy where it hurts. He's probably an excellent listener (most dogs are) and very compassionate.

Feel better soon.

Henry

Anonymous said...

Dear Kelly,

Sorry to bother you again, but I just remembered a story you might find amusing. You may recall that "Great Expectations" has a lawyer named Mr. Jaggers. Well, about 4 years ago, I had to translate a brief in a patent case. These things can be fun. As long as the content is accurate, you can have a certain amount of freedom when it comes to style. Whenever I get one of these things, I close my eyes for a few seconds, and say: "Come on, Mr. Jaggers. We've got a job." Then I imitate Jaggers' style, and before you know it, the job's done. Anyway, I had the brief, and it was long. I turned it in to the agency that assigned it. They passed it on to the law firm that needed it. A couple of days later, the agency called back. The owner of the agency said: "Henry, I got some feedback from the lawyers. They said it was a good translation. They said it was obvious the translator has had legal training, probably in England."

I told the owner of the agency that I had had an English lawyer as a teacher. He asked me if my teacher were still alive. I told him no. He was long gone. I didn't have the heart to tell him that I pattern my legal translating style after a fictional character.

Say, if you haven't read "Great Expectations," you might want to put it on your list.

Feel better soon.
Henry

Anonymous said...

Hi Kelly,
Sorry to hear you had such a rough time with your latest chemo. I guess it's just never the same two times in a row is it? It sounds like you never know what to expect from it. Hopefully the IV will help, and you'll be feeling much better soon. Congrats to both you and Megan for getting to be a part of Singing in the Rain! Hope you're feeling better soon!
Love,
The Silvestris

Anonymous said...

Hey Kelly,
Bummer you're stuck at home right now, but I'm sure you will be back out there in no time! Reading your blog...wow...you have done some incredible things...and you have done them with incredible grace. You are inspiration to so many people, which is why you are put in so many of these unusual places. Although you may not feel like it right now, you are a true dancer, and this blog just shows you dancing so beautifully through life! Keep on dancin' kidddo, cuz you touch a lot of people that way!
:)Maria (from Room to Heal Foundation)

Gabby's Mom said...

Good morning Kelly! I am sorry chemo went so badly and hope you are feel less nauseous soon. I wonder what ever happened to the acupuncturist? Not to poke holes in the fluids bag but before chemo!

Oh, the joys of a really good book - makes you forget where you are and what is going on and takes you to a new place. I hope you picked out a great novel (or actually more than one since your Mom was making a special trip! :)) that makes you forget about the IV and how yucky you felt. That's why IMO books are so much better than a movie. You are only limited by your imagination.

Did you ever wonder why salt makes your thirsty yet they give you saline to hydrate? Wish I could tell you what they told me once but I don't remember! Something about puffing something up that sounded like jibberish to me.

I know that your home is your refuge but I also know because you are so smart and can escape in a book that you can make your refuge anyplace you want it to be. Mentally you can have a refuge anywhere. Only physically for a few days did that change and then it will be back to normal...whatever that is!

Get your Mom to email if there is something special you would want.

Love and many good thoughts,
Pat

Candy from Audrey's Umbrella said...

Hey Kelly! It sounds like the last couple days have been a major bummer. I really hope the hydration perks you up and helps you feel much better. You must feel very blessed to have Nurse Shannon taking care of you:)

A trip to Borders sounds like a pretty good compromise to me, although I'm sure the IV stinks either way. Have you found a new book series that you like? I'm going thru Twilight withdrawal!! (Although I did read the books over again:))

Congrats to Megan on earning a part in the play! That's going to be such a fun (and tiring) experience. We went to a play at Eric's middle school last night and it was very moving. It was called, "I Never Saw Another Butterfly" and it was the story of a young Jewish girl who survived Terezin, a concentration camp. The kids really did an amazing job with it...although they were a bit bummed that the Fire Marshall made them take down the 18,000 paper butterflies they cut out.

(((Hugs))),
Fairy Candy

Anonymous said...

Hey Kellie!!!! That sounds like so much fun to help out at sining in the rain! tell megan congrats too. That is so cool that you got to go down the Twilight hall of fame thingy!!! I'm so happy you introduced me to Twilight. i'm now reading Breaking Dawn! Woo-hoo!! Well, you are in my thoughts and prayers, we have to see each other again REALLY soon!! Love you <3

Lauren Meyering :)

awesomeangel said...

Hi Kelly,
We are soooo sorry that you are feeling this ill and that you have to have an IV in at home. We are praying for you and for your whole family.

warm hugs,
Cheryl and Angel/Angel_Wings
www.caringbridge.org/visit/awesomeangel

Ms. Polly said...

Hey, Kelly!

Yep, those little "speed bumps" out there can kinda get a girl down. The upside is feeling better to be out-and-about soon. I am very glad to read you are anxious to get to scholl and in the swing of things.

I always like working stage crew once in a while when I was in school. However, I was prone to get "the giggles" back stage for some reason. ;o) Lots of great memories. I even started out majoring in Theater Arts in university, ended up in Accounting!

I am sending you oodles of hugs, praises and prayers. I pray for you and your family each day.

"May life's greatest gifts always be yours!!happiness, memories, and dreams."

Hugs. . . .Polly @ Angel_Wings

Anonymous said...

Hi Kelly,
Hope you are feeling better by the time you read this!! I like the root beer float idea from Katie and Heather!

We've been having some pretty chilly weather lately! It's been dropping into the low 30's at night and only getting into the 50's during the day! Ryan even had to wear pants to school three days in a row! Yikes, you know it's cold around here when Ryan has to break out the pants! Today is a warmer day--in the high 60's!

We're so excited for you and Megan being part of "Singing in the Rain!"

It's so nice you have your own personal nurse at home!! Great job, Nurse Shannon!! :)

We're sending extra love and hugs your way,

Love,
Aunt Jenny, Uncle Bob, Kylie and Ryan

Anonymous said...

Hi Kelly,
You are not missing much at school today. It is cold & rainy. You can take the ceramics final next week when you come back. Have a nice 3 day weekend. See you Tuesday.
Mrs. Bubnis

Anonymous said...

Rain stinks, IV at home stinks.... but there are rainbows after the rain, and there will be smiles after the IV is GONE.... even through they are opposite (smile goes opposite way..) they are both great to see.... and your great IN THE PICTURES...I SEE SMILES/RAINBOWS and an occasional Moose :-)

Love Chris and Wendy Leonard

Anonymous said...

Kelly,
I'm so sorry you aren't feeling well. I hope the hydration helps. I will say extra prayers for you. Find a good book, a snuggly blanket, some comfy pjs and try to enjoy the next few days. Blessings to you, Kathleen Gettinger (Taylor's mom)http://www.caringbridge.org/visit/taylorgettinger

Julie Price said...

Just wanted to stop by to let you know you and your family are in my thoughts and prayers. Sorry to hear you have been having a rough time. Sending you lots of hugs Kelly. God Bless You Sweetie.

Angel Hugs, Julie---Angel_Wings

Anonymous said...

Hey Kelly!

I am so sorry to hear that you had such a rough day. I know our circumstances are different but as my mom said I have been through at home infusions. One of the nice things about it was that there was no rush for me to regain my appetite because there was no way I could get dehydrated so I didn't have to worry about rushing back to the hospital if I did. I know the feeling of trying to rush back to school all too well because I think when you are sick it is more of a privilege than something that is required. I will be praying that the fluid helps so you can make it back to school. I have been checking the Main Place Mall movie times and so far they are not showing Twilight but maybe when they are we could see it!

Love and Prayers,
Sarah

Joana said...

hey this is joana (the other girl with a brain tumor) i think i found your facebook. well i searched for you name and there was only one in california and the picture looked ab it like the one that is posted here. so i friend requested you! add me =)

i just finished finals too. and we must have a lot in commen, because i just was cast in my high school musical (the sound of music) as well!!!!!

i hope you add me on facebook soon!!! joana

Anonymous said...

Dear Kelly,

Today, I'm goofing off. I got off to a good start by writing to some relatives in Ireland (a cousin of my mother's and his wife), and soon I'll turn my attention to the book we're reading in the Mahwah book group, which is ably led by your Aunt Denise. The group meets on Wednesday. I think I have a better than even chance of finishing the book by then.

I imagine you are enjoying beach weather. Think of us poor devils as ay bask in the warm sunshine. It's 22 degrees here today, though it is a bright, sunny day at least.

I hope you're feeling well today, and I hope your next blog update has happier news.

Henry

Ashley Vaerst said...

I understand wanting to take comfort in home, but the comfort of home as opposed to a hospital I don't know. Infusion stinks, but it is a necessary process for most on the road to recovery from cancer. I applaud you Kelly, wanting to go to school even while doing chemo - wow. I did not want to do much of anything while on chemo (my last treatment was last Wednesday).

Good luck with everything!! Go Diablos from a 1993 grad.

Ashley

Hi, I'm Hannah! said...

Hey Kelly,
Sorry you haven't been feeling well. Hannah used to hate at home IV's also-via her port or otherwise, so I understand the at home refuge feelings. But hopefully it's helping you feel better.

Now-I have to give you some hints. I see that your mom had to bribe you with a book. You're on the right track! Hannah now uses her special "deals" for every MRI, and other out of the ordinary medical procedures. She spent the afternoon at the ER a couple weeks ago. Even though I told her there would be no pokes, they had to put in an IV to draw blood. She negotiated for dinner, $20 and a store of her choice (to buy something). How's that for a deal? And she's only 9 years old.

I think she collected about $80 from her last MRI. She has another one coming up next month, so she has already started contacting grandparents, aunts and uncles.

Sorry Kathy, but we had to share! :)

Love from your NY friends,
Kim and team Hannah
www.hannahpro.blogspot.com

Anonymous said...

Hi Kelly,

Happy (Chinese) New Year! I understand it's the year of the ox, which is suposed to be a good year. I'm told it's good luck to eat oranges, tangerines, kumquats, any fruit that's sort of gold color.

Crab and lobster are supposed to bring luck, too.

Whatever you eat, good luck!

Henry

Anonymous said...

Dear Kelly,
I feel that I would like to leave you a message, too. I really believe that people thinking good thoughts can chanbe things. So my prayers are with you and your family. It's a tough challenge you're facing, and you're dealing with that in a way I really admirer. Stay strong, I

oceanlisa said...

Kelly, thanks so much for your help at the gala Sat. night. You and Cheyenne and Sammy are just awesome. And you looked so great! Next time you are over in the OPI I'll come over to see you. Thanks again!

-Lisa in the CHOC Foundation

Gabby's Mom said...

Hi Kelly! So you DID get to do the CHOC event? That's great news and I hope you had a wonderful time and felt well. From the post it sounds like, as usual, you looked beautiful1 I cannot wait to find out what book you picked out!

Love,
Pat ^..^

Anonymous said...

Hello, Kelly,

Hope you are feeling lots better!

Congratulations to you and Megan for your upcoming participation in the production of Singing in the Rain--you in "behind the curtain" preparations and she in a dancing role. Hope you both have an enjoyable and memorable time.

Continued prayers are sent up daily.

With love,
Wylene