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Sunday, December 18, 2011 7:50 PM CST
Wow! It's been 5 years today that Chassity got her wings. I can't believe its been that long already. I think about her everyday and wonder what her life would be like now if she was still here with us. But knowing shes is in such a wonderful place and no longer sick or in pain, makes it a little easier to bare. Even though she's not here with us, she continues to be in our everyday lives.
Merry Christmas and Happy New Year!
We love you and miss you so much Chassity!
Love Mom, Dad, Jamie and Cody
Saturday, December 18, 2010 9:38 AM CST
Hello Chass,
Today marks 4 years since you left us. Not a day goes by that I don't think about you, wishing you were here to see what you would have become. But I know you are in the best place possible, doing exactly what you always dreamed of doing, Taking care of kids. I miss you more than you could ever imagine and love you so much.
Love, Mom
Friday, May 7, 2010 2:09 PM CDT
Hello Chass,
I miss you and love you so much. Take good care of Darius for us.
Always thinking of you!
Love, Mom
Sunday, February 14, 2010 10:28 AM CST
Happy Valentine's Day Chassity!
And Happy belated 21st Birthday!
We love and miss you so much.
Love, Mom
Friday, December 18, 2009 6:09 AM CST
Today makes 3 years that you have gone. It seems like yesterday that we were still driving back and forth to the doctors and hospital. There's not a day that goes by that I don't think of you.
Wishing you a Merry Christmas and Happy New Year Chass!!
I love and miss you.
Mom
Sunday, November 22, 2009 10:57 AM CST
Happy Thanksgiving Chass!
I love and miss you everyday!
Love, Mom
Monday, February 9, 2009 6:37 PM CST
Happy 20th Birthday Chass!!!
Love and miss you!
Thursday, December 18, 2008 12:15 AM CST
Today has been 2 years since Chass has passed. Here is what Kevin said at her funeral.
By Kevin Lee
Monday, December 18, 2006
Whenever I used to come visit, Chass in the hospital, she would lean over and say… “Okay… entertain me…” and then wait for me to tell her stories…
So I couldn’t think of a more appropriate way to talk about her… then to tell everyone stories...
I remember… when Chass and I first met…
I was walking down the hallway when the emergency light went off by her room.
I ran in and Chass was on the bathroom floor. Carrie was kneeling next to her with her eyes wide open and all she could say was, “Help.” The chemo that Chass was on kind of messed with her head a little bit. So she had stretches where she could walk and do stuff, but she was off in another world. So apparently, Chass had gotten to the bathroom with Mom’s help and then on the way back… decided to rest on the floor… as soon as possible.
So I picked Chass up and had her arm around my shoulder and started walking her back to her bed… but that chemo… it really really messes with the head… because as we were walking, Chass’ legs would kind of buckle every few steps and she would let out this, “Yip, yip.” And I remember just thinking, “What in the world is this child on?” But we got to the bed… yips and knee bucklings and all. And once we got her situated, I introduced myself to Carrie so that she knew that this total stranger that had walked in and picked her daughter up off the floor was actually someone who worked there and was going to be there for physical assistance throughout the day.
Later that day… when Chass woke up… her Mom told her what happened… and I guess Carrie got Chass’ attention real quick when she said some guy picked her up off the floor. I suppose that when you’re a 16 year old girl and you hear that some guy picked you up off the bathroom floor while you were in a hospital gown that didn’t cover your back very well… you tend to get… concerned…
So when I came in afterwards… and introduced myself to her… she had this nervous smile on her face… and she kind of just chuckled and said… “I don’t remember anything.” When I told her about the “yips,” … for the first and only time I can ever remember… Chass was actually at a loss for words. Seeing as how I could tell she was embarrassed, I told her, “Don’t worry. I won’t tell anyone.” And she laughed and said, “you have to promise that you won’t.” And it was our ongoing joke that I would always threaten to tell people the story, and she would scream, “NOOoooo!!”
In fact, during her last few weeks, when she was kind of out of it and not really responding to anything… I jokingly asked her, “Is it okay if I tell everyone the story of how we first met?” And in her out of it state, she started to frown and shook her head and let out a grunt.
But that was the beginning of my walk with Chass`.
From that point on, she and I shared a lot of conversations… and started a lot of trouble…
I remember Chassity as my partner in crime…
We used to talk about what it’s like having cancer… and we started talking about all of the perks…
Perk #1 – You can get out of doing a lot of junk that you don’t want to do…
We even worked out a whole routine… “Oh… I really wanted to do my homework, but I couldn’t… because I have cancer… cough cough… achoo!”
Perk#2 – You can guilt a lot of people into doing stuff for you…
“Not even for a poor little girl with cancer? Cough… cough… cough…”
Perk #3 – When you start to get bored with someone… you can just go to sleep and blame it on the chemo.
Perk #4 – You can say whatever you want and blame it on being emotional because of your medications. We worked out a routine for that, too. “Screw you! I’m sorry… I just get emotional because of my medication… sniff sniff…”
Perk #5 – You get full access to TONS of narcotics. In fact, one day she was prescribed morphine drops for her throat. She was looking at the bottle and wondering if people would buy morphine drops like they buy oxycodon or heroine. I told her, “Are you kidding? We could make a fortune! Fast, easy to swallow.” We worked out a distribution plan… what corners we would sell it on. We just couldn’t agree on what the split would be. I wanted it 50-50, she wanted it 100-0. It was a fun joke up until the day she asked Dr. Kitchens if she could go on morphine drops. Dr. Kitchens looked at her and said, “What for?” And Chass just said, “Oh… I might be feeling some pain… or something…” Smooth, Chass. Real Smooth. Dr. Kitchens looked at her and then over at me and I made out of there like a bat out of hell.
I remember Chassity… the mischievous…
During one of the first weeks I took care of her… someone handed out some goodies to the Hem Onc kids. Among the goodies they handed out were these tubes of green and blue hair coloring… I’m not sure what kind of sick mind gives hair coloring to a bunch of kids with cancer… but we definitely made the most of it. Me, Chass, and these 2 other Onc kids, Loren & David decided that since no one really had hair… except me… we would use the hair coloring to paint each other’s faces. After we had all gotten each other… we gathered in Chass’ room and took pictures. We joked around that we all looked like the cover of some bad National Geographic Magazine… The lost children of the Chemo tribe…
When Chass got bored, she thought of ways to vandalize me. One day, Chass decided to make little pigtails with my hair. It took 10 rubber bands… and about 3 hours… and in the end, my head looked like the sides of a pineapple.
One day, she decided she was going to tattoo me… with a black sharpie… I was walking around the hospital the rest of the day with “Chassity was here” written on my arms.
One day she decided she was going to get me with some water-filled syringes. And she got me… what she didn’t count on was that I had access to BIGGER syringes than she did and… I didn’t really care whether she had cancer or not.
I remember Chassity… and food…
We used to LOVE to talk about food.
Our favorite food to talk about was canned peaches… wonderful, glorious, chilled, canned peaches… We once had a 30 minute conversation about canned peaches. Then we spent an hour talking about the fact that we couldn’t believe we talked about canned peaches for 30 minutes.
She also loved to talk about Red Lobster, Olive Garden, Campbell’s Vegetarian Vegetable Soup, cabbage, and brussel sprouts…
She used to LOVE to order food… She never really ate any of it… but whenever she came in the hospital, she LOVED looking at the menus and ordering.
I remember Chassity… the National Enquirer…
Chass LOVED gossip. She liked hearing it. She liked spreading it.
If I ever wanted to know about any of my co-worker’s dating situations… all I had to do was ask her.
Through Chass, I always knew who was pregnant, thinking of buying a house, going on vacation, or had diarrhea.
When a bunch of the families that knew each other would be admitted at the same time, everyone would pull their chairs out into the hallway and talk… we called it “the porch.” And there were a couple of times when Chass was feeling crummy and had to stay in bed. When I would go into see her, the first thing she wanted to know was what was happening on the porch… who was there… and what was being said.
I remember Chassity… the smart ass…
One of my all time favorite nicknames for Chassity… I believe created by Penny Cummiskey… was Sarcasity…
And she lived up that name. Boy did she know how to dish it out…
I remember when she was in the PICU, they were giving her pre-meds for Platelets by giving her benadryl and Tylenol, so that she wouldn’t develop a reaction. The nurse asked her if she was allergic to anything… and Chass said, “Ummm… Platelets…” The nurse looked up at her and didn’t know what to say… I was about to crap my pants I was trying so hard not laugh.
While she was in the PICU, she was also told that she wasn’t supposed to get out of bed. So when it came time to go to the bathroom, she called the nurse. The nurse told her to use the bedside toilet, and Chass replied, “Umm, hello, you said that I wasn’t allowed to get out of bed.”
Whenever someone new walked into the room, it was like… “fresh meat.”
I remember sitting with her one day, when the dietician came in. Chass had been having problems with her gall bladder and the dietician was going to come in and talk to her about her nutrition. The lady that came in didn’t speak English very well and was kind of awkward and as they started talking, I knew Chass was going to eat her alive. The lady looked at Chass’ tray and was telling her that she shouldn’t be eating greasy foods. And Chass told her, “Ummm… talk to YOUR people in the cafeteria… they’re the ones that made it. I just eat what they send up. What do I know, I’m just a little girl with cancer.” The dietician looked at me with these eyes that said, “Help.” I quickly left the room. And when the dietician came out later… she looked like she had just finished wrestling with a giant alligator… and lost.
When you have trouble with your gallbladder you go on a special diet where you’re supposed to primarily eat, Bananas, Rice, Applesauce, and Toast. It’s called the BRAT diet. I think that when the dietician put Chass on the BRAT diet, she might have done it with a little extra feeling.
When Carrie told me that they had asked a Psychiatrist go into talk with Chass, my reaction was, “huhuhuhuhuhuh hah hah! Just imagining what that first time must have been like. And when she told me that Chass threw him out, I laughed even harder.
I remember feeling sorry for any of the residents that came in to see her for the first time, because they had been warned that Chass could dish it out… so they would come in walking on eggshells… and then Chass would say something smart alecky… and they would start sweating and saying, “umm and uhh, a lot.”
I remember Chassity… utterly and completely in charge…
Whenever a new nurse came in… Chass was ready to tell her how and when things were going to get done… And most of the time… all the nurse could say was, ok.
Even during her last few incoherent days in the hospital, Chassity was completely in charge. There was one night when she was surrounded by Carrie, me, and 2 of her favorite nurses, Kimber and Cameron. Chass started having some hallucinations, where she was seeing a very large bug. And it freaked her out a bit. And it was a bit unsettling. But the funny part was how she had everyone on edge doing exactly what she wanted. Cameron was going to get up and swat the bug for her… Chass screamed at her and Cameron sat very still. All of us were yelling at Cameron to stop moving and stay very still. Then Dr. Weil came in… and Chass started screaming. So Dr. Weil stopped in her tracks. And Chass was screaming at her about the bug. Dr. Weil started to walk out of the room and Chass screamed at her No. So Dr. Weil just stopped and had this look on her face of… waaaaaaahhhhhhh….. I don’t know what to do…..
So we finally started to get her calmed down… and we started telling her that we had gotten the bug. Chass asked us if we flushed it. And we all said, yes… That’s right… we flushed it… About 10 seconds later… Chass asked why she hadn’t heard the flush… We all just looked each other… Oh, we took it outside, yeah, yeah, we took it outside. None of us thought to just flush the toilet. Doctors, nurses, med students… stumped by a kid with cancer on morphine and atavan.
It was a really stressful hour and all of us were frazzled by it… But afterwards we laughed until we had tears in our eyes… thinking about how even in her incoherent state… Chass still had the entire room completely controlled… right down to every move we made…
Chassity was really something. Working on a Pediatric Floor, you get to meet some really amazing kids. But even out of that group of kids, Chassity stood out.
I remember Chassity… the kindest child I have ever met.
One of the first stories I had ever head about Chass, before I had even met her… was from one of the other kids who was going through treatment. This little 9 year old boy David was telling me about his girlfriends. And among that group of girlfriends… was Chass. So when I finally did meet her, I went back to David and said, “Hey, I met your girlfriend, Chass. She seems really really nice.” And David looks at me and says… “Yeah… plus she’s really hot.”
But Chass more than any other patient I ever saw… was so full of empathy for other kids with cancer. She never really wanted to talk about how tough it was for her. Instead, she always talked about how tough it was for some of these littler kids… or as she called them… her little buddies. When they were trying to get David to walk more, Chass volunteered to sit on a bench at the end of the hall and call out to David to come to her for a hug.
Whenever any of her little buddies came into the hospital for treatment, she wanted to make sure that she could leave her room so that she could go visit them. And when she couldn’t go visit them… the little ones would come to her room and visit her.
When she got the opportunity to meet Beyonce through a program they were having at the Ronald McDonald House, Chassity asked if her favorite little buddy, Ryan, could go in her place, because she knew how much Ryan loved Beyonce. Luckily, they were both able to go. But Chass was willing to let him go instead.
No matter how bad things were, Chass always focused on others and focused on the good. One thing Chass used to say all the time was that, in a way she was glad that she got cancer, just because it allowed her to meet the people that she did.
If you ever read Chassity’s website… and if you go through her entire journal history… you’ll never find a single time when she asked anyone to pray for her. She filled her journal with prayer requests for other kids.
Last year, when so many kids that were close to her were dying… she didn’t worry about herself even though it was tough on her… seeing as how she couldn’t help but wonder if she was next… instead, she worried about those of who were close to these kids… she worried about all of us and how we were getting through this…
She was a complete paradox. She was the ultimate diva, yet the epitome of selfless.
One of the last full conversations I got to have with Chass was over Thanksgiving weekend. We talked about her Celebration of Life party and all of the funny stories and the food and the people. We talked about her scrapbook where people left her notes… and I told her that I was sorry that my page was so lame. I couldn’t think of the right words… because there was so much that we had already said… and what was left to be said… was really just between me and her. And Chass looked at me and said, “But you have to understand that you may have thought it was lame, because you wanted to say more… but what you said meant something to me… even if it was just a few words… because I know you… and just seeing anything meant something to me… so quit saying you’re sorry… because I promise you… no matter what you think… it wasn’t lame.”
My little, perfectly selfless diva.
But we also talked about something else. We talked about today. We talked about what she wanted to be said at her funeral.
First and foremost… she wanted to thank her Mom.
Chass wanted everyone to know… how much her Mother did for her…
Chass wanted everyone to know… how sorry she was that her Mom had to go through all of this…
Chass wanted everyone to know… that her Mom was like her best friend….
Chass wanted her Mom to know… that she wished she could have bought you the world…
Chass wanted her Mom to know… that she loved her… and that she was so grateful that she had the Mom that she did…
But Chass also wanted everyone to remember the fun times that we all shared together.
She wanted everyone to remember funny stories… and remember all of the things that made our relationship with her special.
Chass didn’t want us to sit around here and mope and be sad and depressed.
Chass wanted us to celebrate her life… and remember her.
During one of her last nights, Chass and I were alone, we got a chance to say a lot of the things we wanted to say… and I sat there with her and held her hand and stared into her face. After a while, she looked at me and started to struggle to talk… and I leaned in and I said, “What is it, Chass. I’m here. What do you need to say?” And she blurted out, “Do you have a problem?” This totally threw me off and I didn’t know what to say or what she was talking about. And then I understood. I asked her, “Chass am I annoying you because I’m just sitting here staring at you?” And she nodded her head emphatically, yes. And I laughed and kissed her head and said, “Ok. No more moping.” She said, “Turn on” for me to turn on the TV. I asked her if she wanted to watch Grey’s Anatomy and she nodded yes. I told her that it was a re-run and she said, “don’t care.” Chass had had enough of us sitting around feeling sad together.
This is Chass. She didn’t live her life feeling sorry for herself. She doesn’t want us to sit here and feel sorry for her either. She wants us to “turn on.” Go out and live.
She wants us to live life.
She wants us to cherish each other.
She wants us to be thankful for every moment that we get.
She doesn’t want us to remember her death.
She wants us to remember her life… and how she lived it.
To my dear sweet Chassity,
In 2 ½ years, I will graduate Medical School and start my path as a Pediatrician. I will probably see over a million more kids in my lifetime. But during that time… I will never meet another Chassity Simone Flint.
Every time I see a ladybug, a sarcastic comment, a can of peaches, an x o, campbell’s vegetarian vegetable soup, a wild cherry slurpee, red lobster, … a dragonfly…
I will remember your beautiful smile and your kind, gentle heart.
Thank you, Chass, for your friendship.
Thank you for sharing your time in this world with us.
Thank you for your love.
Know that I will always remember you,
And that I will never forget that God gave me the privilege of walking side by side with one of his angels.
Thank you, Chass. I’ll love you forever.
Chassity has conquered
I love and miss you Chass!
Love Mom
Sunday, December 14, 2008 9:14 AM CST
Hello All,
It's been a very long time since I've updated. But we are approaching the 2 year mark of Chassity's death. I can't believe it's been that long already. Still seems like yesterday we were going to the doctor's for treatment or some kind of products (platelets or blood). Time keeps moving forward whether you want it to or not. You have no choice but to move with it. And with each day, I live this life without my daughter here with me and remembering that her wish for me was that she wanted me to be happy in life. She did not want me to be sad and mourn for her very long. (But for a short time she did). She always had a way of bringing the best out of anything bad. Towards the end of her life, when she knew she was going to die, we talked about our beliefs and what we thought would happen. We believed that she was going somewhere really special because she was needed there more than here. I still believe that to this day and that is what has helped me thru this. I know that one day I will be with her again.
As for myself, I am working full time. I still work fri, sat, sun and monday schedule and off the rest of the week. This schedule has been a blessing for me cause I don't have to see anyone on the weekends but fridays and mondays I still get some interaction with co-workers. Just enough but not too much social time. Chet and I have been doing alot of different things. We went kayaking and liked it so much that we bought our own kayaks. But now its too cold to go out on the water. We both got bicycles and we like to go riding but again its too cold. He bought me a motorcycle cause I wanted to learn how to ride. We took the motorcycle course and both got our license, and again its too cold to ride. I think we need to move somewhere warm so we can enjoy our toys.
I am now a grandmother for the 3rd time. Jamie has 2 boys and had a girl in October. Such beautiful children. Cody is 18 and finished school last year. He's thinking about going into the service. He wants to go into the Army, I say Airforce or Navy. We'll see how that goes.
I just wanted to keep everyone updated and to thank everyone for signing the guestbook and just checking in on us. I hope everyone has a great holiday and be safe.
Carrie
P.S. Please visit another child with neuroblastoma that was sent home on Hospice. His dad is an incredable writer that always made Chass laugh with his journal entries and he also recently published a book about them.
www.caringbridge.org/fl/zacharyfinestone
Sunday, July 20, 2008 12:51 AM CDT
Love you and miss you always!
Saturday, February 9, 2008 8:22 AM CST
Happy "19th" Birthday Chass!!!
We love you and miss you everyday.
Love, Mom
Monday, December 24, 2007 10:23 PM CST
I wish everyone a Merry Christmas and a Happy New Year. May all your dreams come true and love life to the fullness.
Missing you Chass!
Friday, November 30, 2007 6:36 PM CST
Hello,
A picture of Chassity's headstone is on the photo page. Somehow I put it on twice. The Balloon launch was very nice with a great group of people that came out to see her stone and spend some time catching up with everyone. It's always good to see everyone. Thanks to everyone that came. We'll have to get together again and just hang out.
Some of you might not know this but Chassity picked out where she wanted to be buried. She told me in detail what kind of stone she wanted and what she wanted on it. She also told me what her coffin was to look like. It was all white and she wanted a butterfly, dragonfly and ladybug (Painted) on it. With the help of a friend I made that happen. Chassity got everything she wanted and more. I know she is looking down and smiling.
If you were unable to go to the balloon launch and would like to still go see her stone, email me and I will send directions.
Carrie
Friday, November 9, 2007 7:24 PM CST
Hello All,
I am having a balloon launch at the cemetary
for Chassity to show off her headstone and to get
together with everyone. Since Chassity designed her
headstone, you know she would want everyone to come
see it and honor her with a the gossip she has missed.
She always loved eating other peoples food so again I
will have everyone come back to my house for pot luck
dishes. So, whatever you want to bring, finger food,
desserts or just snacks will be great.
Date: Nov. 18, 2007 (Chassity's 11 mth aniv.)
Time: 1:00 PM at the cemetary
Where: Little Georgetown Cemetary
Directions:
Rt. 66 west to
Haymarket Exit, make left @ light at end of exit
(Rt.15)
Go 2 lights (you see a Sheetz on the corner), make
right on Rt. 55 west
Go about 5 miles
Left on Blantrye Rd (Rt. 674)
Go about 1/10 of a mile and you will see a small
church and cemetary on your left. You made it.
I hope everyone can make it and please let everyone
else know they are invited too. I don't have everyones
email address. Hope to see many of you there.
Carrie
Tuesday, August 21, 2007 7:14 AM CDT
Hello All,
Finally I'm updating. I've been wanting to update for awhile but I feel like I never have much to say. Well its been 8 months now since Chass has passed away. It still feels like she was here yesterday. People always say it gets easier as time goes by but thats not true. As time goes by the pain becomes more intense. Theres not a moment that I am not thinking about her. She is always on my mind. When you lose a child to cancer, you put all memories into 3 categories: Before she got sick, while she was sick and after she died. That is how life is now. I guess its how you keep her part of your life now. Most parents biggest fear is that people will forget her. Chassity worried that people would forget her too. So as long as I live I will let everyone know about her. When I'm asked how many children I have I still say I have 3 and I don't explain that one has died. She made her mark in this world and I won't let that be denied her.
We are still waiting for her headstone to come in. We were told that it will be real soon. So I hope by the end of the month it will be here. I will post it as soon as it does.
I have packed almost everything in Chass' room. I'm glad I waited because it's not too hard now. I know shes probably looking down and saying "It's about time you clean my room". I'm keeping almost everything, just packing it up for a later day to go thru it. Chassity was a pack rat, She kept everything. If you ever sent or given her anything, she still has it.
There's been many kids that have relapsed or died recently due to cancer. I feel so sad that more and more kids die from neuroblastoma and there is no cure in sight. Sometimes I just want to close my ears to cancer but its part of my life. Once it enters your life it never leaves.
I want to thank Lynn from Prayer Bears for signing the guest book every week. Thank you for not forgetting about Chass and us. I know that every week I will have a message from you. Thanks so much.
Thanks to everyone for checking in.
Carrie
PS: Alyssa from IL. Please send me your webpage, Chass always checked on you even though she didn't always sign it.
Thursday, June 14, 2007 2:26 PM CDT
Hello All,
I know its been awhile since I updated but theres not alot to really say. We have been going thru changes and emotions in our lives that no parent should have to go thru. Some days we just function normally then others the pain is there like it just happened. Lately I read about so many kids that have relapsed or that have past away. Cancer enters your life and it never leaves no matter what the end result is. Sometimes I want to walk away and never have anything to do with cancer but then most days I want to help in any way. So for now I'm just living one day at a time and letting time make that decision for me.
I'm still working weekends and during the week we are getting things done around the house. We are thinking about selling out and leaving the area. Chet's has been laid off since February and hasn't found anything yet. So we're taking it as a sign that it time to move on. I had talked to Chass before she passed that I had planned on moving away with-in a few years. She thought I should move and go be happy. She didn't want me to stay here just because this was where she lived. She said no matter where I lived she would be with me. And she is always with me. Now I need to start packing up her room. I still haven't touched it yet. Everything is pretty much the way she left it. Since I'm not really ready to get rid of anything I plan on just packing it and keeping it till I am ready to go thru it someday.
Well I will try to keep updating as much as possible, even if only once a month. Thanks for checking in and signing the guestbook. It does bring comfort to know people still care.
Carrie (Chass's Mom forever)
Sunday, April 8, 2007 12:33 AM CDT
Happy Easter Chassity!
We love you and miss you!
Love, Mom
Wednesday, March 7, 2007 7:55 AM CST
Hello All,
It's been about a month since I updated but there really isn't much to tell. I still work on the weekends then try to keep busy during the week with all the things that was put on the back burner for the past 3 years. I'm in the process of getting Chassity's headstone made. She told me exactly what she wanted, and she always gets what she wants. She wants the stone in the shape of a butterfly with pictures on it. When its complete it will be just as unique as she was. I'm hoping it will be on her gravesite sometime in May. Tomorrow I will be going to the Onc Doctor's office to visit with some friends. It's always nice to visit there and at the hospital. We had great memories there and it was like our second home. It's a comfort to me even though most people have a hard time returning there. Well like I said not much else is happening so till next time......
Carrie
Thursday, February 8, 2007 10:35 AM CST
Hello All,
I guess everyone has been waiting for a update. I've tried several times but just wasn't in the mood. But I know theres alot of people out there checking the page to see how I'm doing. Thanks! It really does make me feel good when you sign and that you are still thinking about Chassity.
About 2 weeks ago, our friend Kevin, the one that updated Chass's entries a few times, asked me to come to his school in Richmond and speak to his class of 1st yr medical students about the whole process of Chassity's cancer. From when she was diagnosed to after her death. I was really nervous because I DON'T do public speaking. But I knew this was the beginning of my speaking about Chass. It was wonderful and I must admit I did a great job. I was on such a high after that that lasted for 2 days. Then I crashed for 2 days too. It was so wonderful to talk about her and people really wanted to know her story. If only for a moment I brought her back to life.
In my last entry I spoke about going back to school in May, well I still plan on doing that but I'm not sure what I want to do. My career is already in computer IT. I really don't want to do that the rest of my life. But I do want to stay involved in the cancer world. NO, I do not want to be a nurse. I want to be the one that talks to the family at the beginning of diagnoses and follow them thru to the end, regardless what the end will be. Some people said to leen towards social worker but not sure if thats really it. Any suggestions would really help.
As far as life without Chass, I'm learning to adjust. I don't feel like I'm forgetting something anymore. It's hard to really put it into words but I know Chassity is within me every step of each day. We had such a great relationship, and nothing was ever unspoken with us. I know she happy and healthy now. That gives me peace.
Tomorrow, Feb. 9th is Chassity's 18th Birthday.
HAPPY BIRTHDAY CHASSITY.....I love you mostest!
Love, Mom
Thursday, January 18, 2007 8:04 AM CST
Hello,
Today is 1 month since Chassity got her wings. Time seems to go at its own pace. Sometimes it goes fast then other days seem to just crawl by. Emotions seem to run on the same schedule. There are days when I'm "ok", then some when its so hard to function. I go to the cemetery several times a week. It gives me my alone time to just talk to her and to remember. Chass and I spent alot of time together, just the 2 of us. I miss that.
I went to PA for a couple of days to get away but I realized that I still missed her there too. Theres no running from what I'm feeling. She was always with me when I went up there. I went to the same store we would always go to. It's good to be home though.
I started back to work last weekend. I only work on the weekends because of all the appointments Chass had during the week. I actually like working then cause there are very few people there and I'm planning on going back to school in May. So this way I can go to school during the week and still be able to work weekends.
I was going thru some of the cancer webpages and found a letter someone had written saying about when their child died. The one thing that stuck out the most was she said when it was her time to die and she met her child in heaven, what was she going to tell her when she asked "what have you done all this time while I was gone?"....
I think about that a great deal and I know Chassity would not want me to sit around crying all the time. She would want me to keep living and better myself. Most of all, Chass told me that she wanted me to be happy. That was very important to her. At this time it is very hard to be happy but I do get outta bed everyday and continue to do everything that I normally done. Last week I went back to visit everyone at her doctors office and the hospital. It actually felt good to be back there. We spent most of our time there and it was good to see everyone. It felt good to know she is missed by so many people. I think thats the biggest thing for most parents is that your child is never forgotten. Chassity put her mark on everyone that met her. I know she'll never be forgotten.
Carrie
Wednesday, January 3, 2007 9:36 PM CST
Hello All,
I'm at a lost for words but I know everyone that has been checking the webpage is waiting for an update.
It hasn't been easy lately. I've had to be strong for everyone, especially Chass for such a long time. Then I had to be strong to get theu the funeral and make sure things were done just how Chass wanted them and even more. Now it is really starting to kick in for me. I can't be strong for anybody else now.
I started to go thru some of her medical supplies. It was a daily part of our lives. I only can get thru a little at a time, then have to give it a break for a few days. I think it will be a long time before I do anything with her room. She has so much stuff in there that I can hardly get in there. But its her stuff that people gave her and things that was just hers that she saved over the years. She was into scrapbooking, so she has tons of that stuff. But for now it will stay as is.
At first it just felt like she was away at camp. But shes not coming home this time. I know shes in a better place and painfree but that don't ease the pain in my heart. I know over time it will get better, but it hurts so bad right now.
I just want to thank everyone that helped me with the funeral and just being there for us. There are too many people to list them all and right now I can't bring myself to write thank you notes. So this will have to do until then.
I will try to update as much as possible, but Chass was the writer, not me. Thanks for signing the guestbook. It lets me know people still think about her.
Carrie
Friday, December 22, 2006 8:57 PM CST
Hello All,
The funeral service was everything Chass had wanted and more. She had told me exactly what she wanted. Her coffin was all white and she wanted a butterfly, dragonfly and ladybug painted on it. With the help of a friend, she got that wish. She wanted her name on the inside lid. I not only had her name but also a purple butterfly embroidered on it. She wore cream colored silk pajamas with butterflies and dragonflies on them. She looked beautiful. Lori and Kevin did the eulogies and was able to bring Chass into everyones life that was there. They told stories that showed how she cared about everyone and funny stories that showed what kind of personality she had. We had a x-mas tree that was decorated with butterflies that everyone got to take with them .
She was buried in a little country cemetery that she picked herself. After the service there, everyone was asked to choose a sticker of their choice (butterfly, dragonfly or ladybug) and place it on her coffin. After watching everyone struggling with there sticker (Chass would have loved that), everyone received a balloon and all together we released them. About half flew high above and the other half seemed to just hang around. Maybe it was too cold for them to fly or maybe it was Chass letting us know shes still with us. Everything was just the way she wanted it. Everyone was invited back to our house to eat and just chat about all the good times there were with Chass.
She was an angel here on earth and now shes an angel in heaven. Her star will shine brightly.
I miss you terribly Chass and love you with my whole heart.
Love, Mom
Chassity has Conquered.
Monday, December 18, 2006 8:43 PM CST
Hello everyone...
This is Chassity's friend, Kevin Lee.
I wanted to let everyone know that...
Chassity has conquered.
At 4:30 p.m. this afternoon, Chassity left us...
She left with the same grace and peace that she carried herself with when she walked this earth.
Carrie is hanging in there.
There will be a viewing for Chassity on Wednesday, December 20th from 7 to 9 p.m.
Funeral services will be on Thursday, December 21st at 1 p.m.
Both the viewing and funeral will be held at:
Royston Funeral Homes Inc
4125 Rectortown Rd
Marshall
Virginia 20116
Phone: (540) 364-1731
Please keep Carrie and all of Chassity's friends and family in your thoughts and prayers.
It has been a long battle... and her presence will be felt... always...
Friday, December 15, 2006 9:56 PM CST
Hi everyone. This is Chassity's friend, Kevin Lee. Just wanted to give you all an update.
Chassity is at home. She is resting and holding up as best she can. When she and Carrie arrived, they found a hospital bed and Oxygen tanks waiting for them... but they also had some special stuff from Make-A-Wish.
Since she is not going to be able to make her Make-A-Wish Trip, they brought her a DVD Player, XBox, and a Gianormous big screen TV. The truth is that Cody is probably going to enjoy the gifts more than Chass... but if you know Chass, you know how much joy that brings her.
Luckily, Chass' Aunt and Uncle were there to get everything set up before Chass & Carrie arrived.
Chass is trying her best to enjoy the time that she has... but it's pretty exhausting on her and her system...
Carrie is holding up well. If we could just get her to remember to eat and get some sleep...
I hope that everyone will take the opportunity to visit or call or sign Chassity's guestbook. She loves hearing from everyone. Let's not take today for granted.
After talking to Carrie... I realized that when I have been signing off.. I have been forgetting the most important part...
And so I leave you today... asking you to please pray for Chassity and Carrie's Comfort... and their well-being... because in the end...
We Will Conquer!
Tuesday, December 12, 2006 4:38 PM CST
Hello all,
This is Chassity's friend, Kevin Lee again.
Chassity had a busy weekend with lots of visitors. She also started to want to drink some. She's been having her Dad get her a slurpee every day and she has been able to talk to those who have visited.
Even though she isn't as alert and super talkative as we all know her to be... she IS still the same strong-willed young lady with the attitude and spunk that all of have experienced firsthand.
The big news is that she has decided that she would like to go home. So, tomorrow afternoon, she will be leaving the hospital. Any help that you can offer and any visits that you can make while she is home would be greatly appreciated... I know by both Chass and Carrie. If anyone needs her number, please feel free to email me.
Please continue to sign her guestbook if you're checking in. She has enjoyed hearing from everyone.
And please continue to keep her in your prayers and thoughts.
Kevin Lee
KevinLee0705@gmail.com
Wednesday, December 6, 2006 2:52 PM CST
Hi everyone,
This is Chassity's friend, Kevin Lee.
I just wanted everyone to know that Chassity is in the hospital.
She isn't doing very well right now.
But she is resting comfortably.
This might be a good time to stop by and visit or call.
They are at INOVA Fairfax Room 552.
Carrie has her cell phone with her as well.
Please keep her in your thoughts and prayers.
KL
Saturday, November 18, 2006 7:16 PM CST
Hello,
The Celebration of Life party for Chassity was a great success. The place was packed with all our friends, family and medical staff from both the hospital and doctors office. Chassity really enjoyed herself and loved visiting with everyone. There were a few people that really surprised her by coming such a long way to spend this day with her. I just want to thank everyone that came and that brought food and gifts and helped with decorations. Chassity is enjoying reading all the entries that have been put into her memory book. If you haven't had a chance to put a page in her book you can still do it. Just send it to me or give it to child life to give to me. I want to thank the child life staff for all the work they put into making this party a success. I couldn't have done this without you. Thank you so much.
Chassity's pain meds have been changed to try and get her pain more controlled. She is feeling better and is awake most of the day now. Maybe she'll update this page next time. Thanks for checking in on her. I always let her know who signs her guess book.
Carrie
We Will Conquer!
Loren, your gift was priceless. Thank you.
Saturday, November 4, 2006 5:41 PM CST
Just a quick update:
Chassity is feeling a little better, but not ready to go on her make-a-wish yet. She will be admitted to the hospital on monday to start the process to get her stem cells on tuesday. The insurance had denied it for the last 2 weeks because they thought it was a full transplant with chemo. Our doctor had to call them and explain it to them and she made them finally understand that we're just giving her back whats hers. You have to love insurances! NOT!
I am having a Celebration of Life party for Chass on Sunday Nov. 12 from 2-4pm at Fairfax Hospital, Physician Conference Center. It will be a potluck dinner so bring your favorite dish. We'll have pictures throughtout Chass's life and we are doing a remembrance book for her too. There will be blank pages for you to write your most cherish memory of her or maybe something you would like to write to her that has never been said. For the younger ones they can draw a picture. It will be put together into a book and given to her at the party. If you can make it, we would love for you to come a share this day with her.
No invitation required.
Carrie
We Will Conquer!
Thursday, October 19, 2006 9:44 PM CDT
Update: Sun. Oct. 22, 2006
Chassity has decided to postpone the make-a-wish trip to Disney till she's feeling better and can enjoy it more. She will be admitted to the hospital tomorrow to get her stem cells transplanted. We are hoping this will bring up her counts and get her feeling good enough to go to Disney.
Hello All,
Sorry I haven't updated in a LONG while but I needed some time to think of what I was going to say. Well I still haven't thought of a good way so I'll just put it out there as things have happened. Chassity spent almost all of Sept. in the hospital. She originally went in for fever and pain. She was already having radiation to her lower left back rib where a tumor had been found. Then she got radiation to both shoulders and her skull because the cancer was growing and causing more pain. She received a low dose of chemo while in there to help with the pain too. We were supposed to have gone to NY for scans and to start the hot antibodies that we been waiting for for over a year to open up. With the progression of the cancer, we won't be going to NY. Her doctor talked to her about what was going on and told her not much was left to do. Her body cannot recover from even the low dose chemo. When she was released from the hospital, she came home on Hospice. They are helping with the pain control. Chass had another MRI yesterday because of pain and hopefully we'll know the results tomorrow. We are supposed to leave on Sunday for disney for her make-a-wish. But for the past 2 days shes been sick and fighting a fever. She goes to the doctors tomorrow and then we'll decide if we'll go or not. We can postpone it if necessary. I will update this weekend if we don't leave for Disney, but if I don't update by monday then that means we'll be in Florida enjoying ourselves and I'll update when we get back.
Thanks for Checking in and signing her guestbook.
Carrie
We Will Conquer!
Thursday, September 14, 2006 6:08 PM CDT
Hello All,
Chassity has been in the hospital since last thursday for fever and transfusions. She's doing ok now but having some pain that we're getting under controlled here instead of home. Last week she finished radiation to her left back rib. Today she started radiation to her shoulder and head. She'll get that for 10 days then they'll let us know what the next plan is. Thanks for checking in on her and don't forget about the Pampered Chef fundraiser. It will run until Sept.28 All the info follows:
Ok, heres some info on a fundraiser that is being done for Chass. Make sure you follow the instructions so she'll get the credit. Thanks for all your support.
Hello Everyone!
I am very happy to be doing this fund-raiser to help the Flint family as Chassity fights Neuroblastoma, an aggressive form of childhood cancer. When this is over, The Pampered Chef will send a check made out to the "Flint Family Fund" and I will also send a check with 100% of my commission to the Fund. This fund-raiser will run until Thursday, Sept. 28th.
There are three ways to help Chassity and family.
#1. Please send this e-mail to all of your friends, family and co-workers. You'd be surprised at how many people who might not know Chassity and Carrie would still be willing to help. We are a kinder society than we get credit for.
#2. Place an order, which I will give you instructions how to do so soon.
#3. Book a catalog show. For every "booking" received for fund-raisers, The Pamepred Chef donates another $3 to the Flint Family Fund. I know it doesn't sound like much, but it can add up. If anyone wants to book a show, I can mail catalogs or the show can be done online, just like this one.
Things to know before placing an order:
We have 60 new products that become available Sept 1st. You can view them now on the site. Check out our new forged cutlery knives, they are GORGEOUS! If you ever have questions about any of our products, please write to me and I will get back to you as soon as I can.
In September, our Cranberry and French Vanilla stones are all 20% off. You can buy 1 or 100, there is no limit to how many you can buy at the discounted price. If you never cooked on a stone, buy one and try it out. If you don't like it, you can send it back in the first 30 days. This will not affect the amount of money going to the Flint family. Let me tell you about how to cook with a stone if you never have. Just tell me in the comments area when placing your order, "this is my first stone."
How to order:
1.) Go to my site: www.pamperedchef.biz/ginabwithpc
2.) When you get into my site, click on the button at the bottom of the page that reads "Order Products". It has a picture of the cranberry stones on it. That will take you to a page that gives you two options.
3.) Go to option 1. Already invited to a show? Type "Flint Family Fund" in the first yellow block. Then hit search.
4.) The next page will show "Flint Family Fund" in blue. Click on that, then start shopping!! (Remember to look at all the new products too.)
Other information:
I ask that each person placing an order please choose to have your products shipped to your own home. The last thing Carrie needs to do is deliver boxes. The shipping costs a little more this way, so you may want to combine orders with your friends to share the added cost.
This fund-raiser is a great way for you to get a jump start on your holiday shopping. This is also a wonderful time to pick up those tools you've been wanting for your own kitchen, or entertaining needs. We have many products priced under $15 that are perfect for hostess gifts, or little thank-yous for the people who have been kind to you all year.
When you place your order, you can use your credit card and feel safe knowing it is a totally secure transaction, or you can mail me a check made out to "Gina Barnes" (I have to have it made out to me because The Pampered Chef will withdrawal the money directly from my checking account) and send it to my address. If you wish to pay with a check, I ask that you please have it mailed to me to receive by the end of September. I never have more than $10 extra in my checking account, so I won't be able to cover the cost until your check is received.... :-)
My address: Gina Barnes
18813 Briars Ct
Olney, MD 20832
(301) 570-0206
Once the show closes on Sept 28th, you should expect to receive your products by Oct 10th.
If anyone reading this is considering becoming a Pampered Chef consultant, I would love to answer any questions you might have. I love the flexibility and FUN in doing this. It works great as a part-time, full-time, or hobby job. If you sign with me, I will give you a present when you qualify.
Thank you for your time. Sorry I took so much of it, but I like to be thorough! Let's all try to help this wonderful family lighten their financial burden. And let's all continue to pray for Chassity as she fights Neuroblastoma.
Thank you again!
Gina Barnes
The Pampered Chef
www.pamperedchef.biz/ginabwithpc
Sunday, August 20, 2006 1:19 PM CDT
Hello All,
Chassity is back from camp and she had a great time. As soon as I picked her up I had to take her to be admitted to the hospital. She just needed blood and more blood and platelets. Her hemoglobin was in the 7's. She always gets transfused at 10. But other than that, shes doing good and will be home later today. Then she'll start radiation on wednesday for 10 days. The doctors said that NY wants her to come up there for scans and to see about the HOT antibodies that we been waiting for over a year to come available. It will be nice to visit there again.
Ok, heres some info on a fundraiser that is being done for Chass. Make sure you follow the instructions so she'll get the credit. Thanks for all your support.
Hello Everyone!
I am very happy to be doing this fund-raiser to help the Flint family as Chassity fights Neuroblastoma, an aggressive form of childhood cancer. When this is over, The Pampered Chef will send a check made out to the "Flint Family Fund" and I will also send a check with 100% of my commission to the Fund. This fund-raiser will run until Thursday, Sept. 28th.
There are three ways to help Chassity and family.
#1. Please send this e-mail to all of your friends, family and co-workers. You'd be surprised at how many people who might not know Chassity and Carrie would still be willing to help. We are a kinder society than we get credit for.
#2. Place an order, which I will give you instructions how to do so soon.
#3. Book a catalog show. For every "booking" received for fund-raisers, The Pamepred Chef donates another $3 to the Flint Family Fund. I know it doesn't sound like much, but it can add up. If anyone wants to book a show, I can mail catalogs or the show can be done online, just like this one.
Things to know before placing an order:
We have 60 new products that become available Sept 1st. You can view them now on the site. Check out our new forged cutlery knives, they are GORGEOUS! If you ever have questions about any of our products, please write to me and I will get back to you as soon as I can.
In September, our Cranberry and French Vanilla stones are all 20% off. You can buy 1 or 100, there is no limit to how many you can buy at the discounted price. If you never cooked on a stone, buy one and try it out. If you don't like it, you can send it back in the first 30 days. This will not affect the amount of money going to the Flint family. Let me tell you about how to cook with a stone if you never have. Just tell me in the comments area when placing your order, "this is my first stone."
How to order:
1.) Go to my site: www.pamperedchef.biz/ginabwithpc
2.) When you get into my site, click on the button at the bottom of the page that reads "Order Products". It has a picture of the cranberry stones on it. That will take you to a page that gives you two options.
3.) Go to option 1. Already invited to a show? Type "Flint Family Fund" in the first yellow block. Then hit search.
4.) The next page will show "Flint Family Fund" in blue. Click on that, then start shopping!! (Remember to look at all the new products too.)
Other information:
I ask that each person placing an order please choose to have your products shipped to your own home. The last thing Carrie needs to do is deliver boxes. The shipping costs a little more this way, so you may want to combine orders with your friends to share the added cost.
This fund-raiser is a great way for you to get a jump start on your holiday shopping. This is also a wonderful time to pick up those tools you've been wanting for your own kitchen, or entertaining needs. We have many products priced under $15 that are perfect for hostess gifts, or little thank-yous for the people who have been kind to you all year.
When you place your order, you can use your credit card and feel safe knowing it is a totally secure transaction, or you can mail me a check made out to "Gina Barnes" (I have to have it made out to me because The Pampered Chef will withdrawal the money directly from my checking account) and send it to my address. If you wish to pay with a check, I ask that you please have it mailed to me to receive by the end of September. I never have more than $10 extra in my checking account, so I won't be able to cover the cost until your check is received.... :-)
My address: Gina Barnes
18813 Briars Ct
Olney, MD 20832
(301) 570-0206
Once the show closes on Sept 28th, you should expect to receive your products by Oct 10th.
If anyone reading this is considering becoming a Pampered Chef consultant, I would love to answer any questions you might have. I love the flexibility and FUN in doing this. It works great as a part-time, full-time, or hobby job. If you sign with me, I will give you a present when you qualify.
Thank you for your time. Sorry I took so much of it, but I like to be thorough! Let's all try to help this wonderful family lighten their financial burden. And let's all continue to pray for Chassity as she fights Neuroblastoma.
Thank you again!
Gina Barnes
The Pampered Chef
www.pamperedchef.biz/ginabwithpc
Saturday, August 5, 2006 1:54 AM CDT
UPDATE Aug. 10---The biopsy came back positive for Neuroblastoma. After camp she will be starting radiation to the site of the new spot. For the next 2 weeks are only going to be fun times. Shopping, camp, then more shopping.
Hello All,
I know its been awhile since we updated but it just seems like the days are passing us by. Well since she has been home from the hospital (from the coma) she's been doing great. Each day you can see her getting stronger and feeling and acting like her old self again. Right after she got out of the hospital we got a call from "Beleive In Tomorrow". They are an organization that provides beach retreats for cancer kids. We had just got our approval for next year at the beach but the social worker at our doctor's office had told them about what Chass has been going thru and asked if they had any openings available this summer. It turned out they did and we left for Ocean City MD on July 24 for a week at the beach. Just the 2 of us went and it was so nice to get away from all the medical stuff she goes thru on a daily basis. We had a very relaxing time. Just what we needed. She did have to be admitted to the hospital there to get blood and platelets but that didn't stop us from enjoying the rest of the trip. We did come back a day early to be admitted at our hospital for more blood and platelets. Then this past tuesday when she woke up she complained it hurt to take a deep breath. So I got the stethoscope out and listen to her lungs. Yep, there was some crackling going on in her left lung area, so off to the doctors we went. Well of course she was admitted again for scans to see what was going on and we're still there. No fluid in the lungs but a little on the outside. Not enough to drain though. But after many different scans they found a mass by her ribs in the same area. They biopsyed it today along with doing bone marrow aspirations. We should have those results sometime next week. They are pretty positive the mass is NB so they are trying to arrange for some radiation next week. Chassity will be going to a cancer camp on Aug 13-19 so we're trying to hold off chemo till after that. She went to camp last year and had a blast. After all shes been thru these past couple of months she needs a little break to have fun with other kids. Even with all this thats going on with her, she looks and feels so much better. People are saying the old Chassity is back. Maybe after camp she will want to update this page herself with all the fun she had. Thanks for checking in and signing the guest book. Until next time.....
We Will Conquer!!!
Carrie
Wednesday, July 12, 2006 9:02 AM CDT
Hello Everybuddy!
Its so good to be home again. I was in the hospital for almost 3 weeks. 1 of the weeks I was in a coma so I dont remember anything but boy have i heard some funny stories. My aunt brought the chilli and slaw from West Virginia and my dad made me the yummiest hot dog ever. It was well worth th wait and just what I thought it would be. She is going back in the WVV this weekend and is bringing back more because be are out. I went to the office on Monday to get 2 units of blood and a unit of platelets which took all day. I have been taking mmorphine drops at home for back pain. I have to use a walker to walk now because my legs are weak from laying in bed for 2 weeks. My legs hurt soo bad to walk because Im not used to it. I start physical therapy tomorrow morning before my doctors appointment. Thats about all thats been going on with me though.
Thanks for checking on me!
We Will Conquer!
Chass
Thursday, July 6, 2006 9:30 AM CDT
July 9, 2006 00:46---update
Chassity is home and doing better everyday. She finally got the hotdog from WV delivered to her and she ate the whole thing. She said she was really full but enjoyed it. Hopefully it will stay down. More chili and slaw will be delivered tomorrow from another family member coming back from WV. Is she spoiled or what? She deserves everything she wants cause she's such a great kid. Thanks for checking in.
carrie
Hello All,
Tomorrow we are going home! Chassity is doing better. Some days she sleeps alot then others shes up a good part of the day. She is able to have small conversations and enjoys listen to others talk. I had told her she was asleep for a couple of days and she was still trying to wake up. Then yesterday she asked why she was in a coma. I had never mentioned the word coma around her cause I didn't want her to be scared. She said if your asleep for days then its a coma. Can't get anything past her. So we talked about it and she was OK with the info. She has been craving a hot dog that we get from the custard stand in WV when were there. We told her a round trip will take 8-10 hrs to go get one. Well shes waiting on it. So we have someone bringing the special chili and slaw from there. She will have it this weekend after we go home.
Like I said in the last journal, this has been an up and down roller coaster ride. And the ride is not over yet. I asked her if she wanted to still go to the beach when she felt better and she said yes. So hopefully in about a week we will just drive down and stay at a hotel for a day or two. It's time for her to have some fun and do some things that she wants to do. I will update after the weekend to let you know how's she doing and if she enjoyed her hotdog that shes been craving. Thanks for checking on her and signing her questbook.
We Will Conquer!!
Carrie
Saturday, July 1, 2006 8:36 PM CDT
Hello All,
I guess everyone is wondering what is really going on with Chass, Well we've been in the hospital for 2 weeks now. This past whole week Chass has been in a coma. It's avery light coma. She's not awake but does move on the bed and occassionally sits up in the bed. Her eyes will be open but its a blank stare. Then she'll lay back down and sleep some more. She is not aware at all whats going on. On thursday night she tried to escape out of bed and got really mad when we wouldn't allow her out. She yelled out for us to get off. Then friday morning she started to awaken by trying to choke her dad. She tried choking me then was very gentle. After that she was awake and answering questions with yes and no answers. Then late last night she started to get confused. She was up all night long having very mild seisures. Sorta like muscles spasms. So they increased her meds and that seems to have helped with them. Their not sure why she went into a coma but they did a EEG and found out about the seisures. Today she slept alot and is still very confused and not as aware as yesterday. This has been an up and down roller coaster ride this time in the hospital. I will try to update every few days.
We Will Conquer!!
Carrie
Tuesday, June 27, 2006 7:56 AM CDT
Hello All,
We're still in the hospital. She is now resting peacefully. Thru all Chassity's journals she has asked for many prayers for her friends when they were in need of them and she said she never would ask anyone to prayer for herself. But now is the time that I must ask to pray for peace and comfort for her. She has fought a long hard battle and shes really tired. Thank you for all the support that we have recieved thru all this.
We Will Conquer!!
Carrie
Saturday, June 24, 2006 3:59 PM CDT
Hello All,
Well we're in the hospital again. We came in monday evening cause shes been falling alot lately and they wanted to do some scans. Well all the scans come back good but shes been sleeping alot and not too coherant. The doctors think shes having a reaction to some meds. So for now we're staying in here and just letting her sleep thru this. They did give her some more of her stem cells earlier this week to help boost her counts. It should take a few weeks before that happens. I had to cancel the beach vacation but hopefully we'll get down there later this summer. I will update as soon as there are changes.
We Will Conquer!!
Carrie
Saturday, June 17, 2006 9:57 PM CDT
Well it's been awhile since I updated. Chassity was admitted to the hospital on May 31 for pain in her hip. We couldn't seem to get it under control at home so she asked to go to the hospital. After a bone scan and a MRI they found that she had fluid in her hip. The pain was so bad she could hardly walk. They were afraid her hip was going septic since all of a sudden she got a high fever. She had to get 2 units of platelets in a hour then rush her down to PACU to have the fluid drained off. As soon as that was done the fever dropped and the pain went away. After waiting a few days for the results of the fluid, everything came back negetive. Meaning it wasn't cancer but not infection either. She was on antibiotics before she went into the hospital so they think thats why it showed negetive for infection. She spent a week there then they let her finally go home. She's still going to the doctors 2-3 times a week for platelets and at least once a week for blood. Her counts are struggling to come up since her last chemo (Apr. 10). But gradually shes starting to feel a little better. Today she was walking up the deck steps and when she reached the top step she fell backwards down them. other then some scraps and bangs she was ok. Since her platelets are so low, she'll have bruises for awhile. She said "know I can't ware shorts when we go to the beach". I decided since it's to hot to go on her make-a-wish to disney right now that I would take her to the beach instead. We leave on Sunday the 25th and will be gone a week. She's excited to be getting away but she'll still have to get transfusions while were down there. We'll be staying in Kitty Hawk so its not far from the hospital. And a short walk to the beach. She loves collecting seashells. I'm planning on taking her on a boat tour to see the dolphins out in the ocean. She loves dolphins. She has them all over her room. She'll be surprised with that. Well I hope that I caught you up on everything and I'll update again with beach stories. Oh she got her HS Diploma brought to her on tueday. That has been such accomplishment to finish HS in 3 years going thru all this cancer stuff. I'm so proud of her.
Till next time.....
Carrie
We Will Conquer!!!
Monday, May 22, 2006 7:41 PM CDT
UPDATE: Our friend Zach earned his wings today after 9 yrs of battling neuroblastoma. Please pray for his family and visit his webpage. It's book marked at the bottom of the page.
Hello All,
I finally have some happy news to share. Not medically but positive happy news.
On saturday the doctor's office had their yearly picnic for all the kids and their families. Everyone had such a wonderful time seeing each other away from the office and all the medical stuff. Chassity had a table set up for all the little girls to get a manicure. They got to pick out finger nail polish, files, lip gloss and lotions. Then Chass would do their nails if they wanted them done. Becky from the office helped with the manicures too. Thanks Becky! While Chass was doing all that, several of us parents and Margy (our office play lady, she loves when I call her that) were getting things together for Chassity's surprise graduation party that we planned for at the end of the picnic. Our social worker at the office got intouch with the school and gave us her cap and gown and a certificate of excellence. She was in the top 1 percentile of her class. (Way to go Chass) She will get her diploma when they send out the rest of them. So I had her teacher come to present it to her and two of the doctors also spoke in her behalf. They all said such great things about her. But who wouldn't, she is so loved by everyone that knows her. The whole graduation was so beautiful. We had graduation music, gifts were giving. It was such a proud moment. But I think the best surprise of the day for Chass was looking up and seeing Kevin standing there. It put the biggest smile on her face. Kevin was a tech at the hospital and now is in his first year of medical school. He is so great with all the kids but him and Chass have a really special bond. When he read the last update about the shrink coming in and her kicking him out, Kevin said just call him cause they can talk about anything and that makes her happy. Thanks Kevin for driving all that way up here and taking time from studing for your exams, you really did make her day. I just want to thank everyone that helped make this day special for her. I couldn't have pulled it off without you. Please, everyone that took pictures, can I have copies and I will post them on her soon. Thanks for everyone checking in on Chass.
We Will Conquer!!
Carrie
Sunday, May 14, 2006 0:04 AM CDT
Hello All,
I know everyone has been waiting for an update on her scans. She had a MRI and bone marrow aspiratioon on monday and then was admitted to the hospital because she only had 1 platelet. Then she started getting low grade temps so we were there all week. Just came home today (saturday). Last week she had a GFR, Mugga and CT scan. All test came back good with no increase of disease. So we are very happy about that. Her counts still have not recovered since her last round of chemo 4 weeks ago. We are hoping they will start coming back this coming week. She is feeling somewhat better but still don't have an appetite. She is drinking some but can't always keep it down. Usually thats when she drinks soda. While we were in the hospital the doctors wanted a psyciatris to talk to Chass cause she sleeps all the time and hasn't been herself for several months now. Gee, I wonder if it's from the relapse and all the harsh treatment that makes her feel that way.(LOL) So anyways this Dr talked to me and just asked about the family and how everyone was dealing with the cancer. Then he said he would come visit Chass the next day. Well he came while I wasn't there and I hadn't had a chance to tell her about him coming. As soon as he said he was a psychiatritis she told him to leave that she didn't need to talk to him. It is good to see she still has spunk in her with a little attitude. I told her its up to her if she wants to talk to him again. The way she handled this puts a smile on my face everytime I think about it, just picturing her telling him to leave. Thanks for checking in and signing the questbook. Happy Mothers day to all mothers out there.
P.S. Please pray for Zach, he's in the hospital not doing too good. Please visit his web page, it's bookmarked at the bottom of this page.
We will conquer!!
Carrie
Monday, May 1, 2006 9:58 PM CDT
Hello All,
Just a little update to let you know that Chass got thru her chemo with no major problems. She was sick somewhat but nothing that some meds didn't cure. She's still trying to recover from the chemo, it's always slow going. Tomorrow she starts getting scans for restaging. She'll finish early next week and hopefully by friday we'll know all the results. I will post them as soon as we know. Thanks for checking in and signing her questbook.
Till next time.......
We will conquer!
Carrie
Thursday, April 13, 2006 11:06 AM CDT
Hello All,
Chass is in the hospital getting her next round of chemo. She's been sleeping most of the time because of all the pre-meds. Yesterday she had her central line remove and another one put in its place with 2 lumens. It was needed so she don't have to get any more IV's. Her veins just won't co-operate. We're supposed to be going home today but shes been throwing up a few times so we'll see how the day goes. we'll definately be out of here for the weekend. In about 3 weeks she'll get scans for restaging to see what progress has been done with these high dose chemo's.
Yesterday another friend (Anthony)earned his wings. He will be missed greatly. You can visit his page at:
www.caringbridge.org/mn/atford
Thanks for checking in, we'll update next week.
We will conquer!
Carrie
Wednesday, March 29, 2006 12:23 AM CST
Hello Everybody,
Sorry for not updating too often. I cant say Im busy or anything, I just havent been in the mood I guess. Anyways, I am sitting here at the doctors office, using the new computer that was donated to us by HopeCam. The point of this organization is to connect homebound children with their freinds at school. Its awesome to be able to get online during the day. I am getting my usual-platelets, and 2 units of blood. Monday was a very long day. I had to get platelets, pentamidine, and IVIGG. We were here until 6:30! Hopefully today wont be that long. I have been having pain issues. My left shoulder has been hurting for about 2 weeks now. Im taking Methadone twice a day and dilaudid for breakthrough pain. While at the doctors they give me morphine instead of dilaudid because it works better. We now have a perscription on morphine drops to try at home. Hopefully all the pain wil be gone soon. I have been working on catching up on my school work. My counts are all back up and Im not neutropenic anymore-yay!
Maybe by next week, I will be able to get my high-dose chemo. It will be in the hospital again becuase of it being high-dose. As of now I will be getting Adriamycin and Cisplatin. Lets all hope we can prevent the mouthsore which is one of the main side effects. One of the doctors even mentioned doing Accutane in between rounds of chemo. It would be super low dose because of all the severe pain I got from it before. They will discuss this tomorrow in their weekly meeting. Im all for anything that could stop the cancer from growing in between chemos. So far its taken 5 weeks for my counts to come up. We would have LIKED to have started my chemo 2 weeks ago so Accutane might be a good idea.
Well, I guess I dont have too much else to report. My life is pretty boring and I am still extremely weak from my last chemo so I am usually laying in bed or something unactive. lol!
Please pray for the family of my little freind Ashleigh as she earned her angel wings this morning. Such a sweet little girl who had to fight NB for such a big chunk of her little life.
Thanks for checking on me.
We Will Conquer!
Chass
Wednesday, March 15, 2006 8:58 PM CST
Hello All,
Just wanted to let everyone know that Chass is home and feeling much better. Her wisdom teeth are not bothering her anymore and shes finally started to eat more. It's been 3 weeks since she finished chemo and shes been getting Leukine shots every day since. Her white blood count is still .3 and does not seem to want to budge from there. So Chass decided to start giving herself 2 shots a day to let those white blood cells know that we're not allowing them to control her life anymore. I'm hoping they get scared and start producing some good numbers by friday. Thats her next Doctors appt. Thanks for checking in and hopefully Chass will do the updating this weekend.
We Will Conquer!
Carrie
Friday, March 3, 2006 6:51 PM CST
Ok just thought Id update everyone. Im feeling a LOT better now. My only problem is that I have a wisdom tooth coming in and it hurts like crap! My counts are way too low to go to the dentist so we are hoping for no infections! Not too much is going on here otherwise. I will update more later!
We Will Conquer!
Chass
Sunday, February 26, 2006 4:27 PM CST
I guess I better update one here myself. The last couple weeks have been hard but Im hanging in, sometimes by my threads of determination, but I hanging on. This heavy chemo was hard on me in more than one way but its over and we are slowly moving towards the next. Im tired a lot and exhausted. My eating is inproving so thats a plus. Thanks for all the kind words you left in my guest book. We enjoy reading them. Im trying to stay strong, sometimes I just need my moms little boost. Until next time.
We Will Conquer!
Chass
Monday, February 20, 2006 0:06 AM CST
Hello All,
I wanted to thank everyone for wishing Chass a Happy Birthday. She enjoys hearing from everyone. Well this past week she spent most of the time getting scans for restaging. By the time we finished on Wednesday with scans we knew for sure that she relapsed. She still had to get scans and bone marrow aspiration on friday but the doctors were already putting a plan into place. Chassity found a lump on the crown of her head about 2 weeks ago that that site came back positive for cancer. She was admitted into the hospital on friday afternoon and on saturday a biopsy was done on her head. Sunday she started high does chemo again. We hope to get out on wednesday if all goes well. I will update later this week to let you all know hows shes doing. Thanks for all the support we receive thru this web page. It really helps to get thru these hard days.
We Will Conquer!
Carrie
Thursday, February 9, 2006 7:56 PM CST
Hello All,
Chassity is doing good. All her pain is gone and shes finished another round of chemo. Shes been sleeping alot this time and is nauses and not eating but other than that shes good. Next week she gets all the scans done for restaging. We all feel the news will be great. Nothing else to real exciting going on except.......
Today is Chassity's 17 Birthday. We celebrated at the doctors today and we plan on more celebration next week. Thanks for checking in on her and please sign the guest book. She loves hearing from eveyone.
We Will Conquer!
Carrie
Saturday, January 21, 2006 10:08 PM CST
Hello, just a quick update:
Im doing ok. I was in the hospital last weekend, just an overnighter though. I have chemo next week so lets hope all is well thorugh this round. sorry fo not updating much but I just havent been up to it I guess. Try not to worry too much, Im doing ok.
We Will Conquer.
Chass
Tuesday, January 10, 2006 8:57 PM CST
Hello all,
Sorry it's been so long since I last updated but I was hoping Chassity would be doing this instead of me. She's doing ok. Still having some pain but we got that under control. She had a great xmas. She was very surprised that she got a tv. She thought it was supposed to be her brother Cody's cause thats what I had to tell her cause she was with me when I got it. So for a month it was in the back of my SUV and she kept telling me to cover it up so he didn't see it. She couldn't beleive I pulled that off on her.
She had 3 days of chemo the week of xmas so nows shes trying to recover from it. Getting blood and platelets a couple times a week. At least she wasn't admitted from all this. She's been taking a break from the computer cause there are alot of kids she keeps up with through these sites and after all the loses we had thru the summer and fall, its hard for a teen or anyone to deal with. I think its done her some good to take the break. She does get on about 1-2 times a week just to check on everyone. Well hopefully she be the one to update the next time. I just didn't want everyone worrying about her cause shes doing good. Till next time.....
We will conquer!
Carrie
Wednesday, December 21, 2005 8:39 PM CST
Hello All,
Sorry for not updated sooner but not much has been going on with Chassity. Shes been getting the normal platelet and blood transfusions since the last chemo. No hospital stays so thats really good. She will start her next round of chemo on dec. 27 for 3 days only. The doctors decided that the 5 day chemo is taking a toll on her body so they reduced it to 3 days and 3 weeks in between each chemo instead of only 2 weeks. They want her body to be able to get stronger but still be able to get the chemo she needs to keep her in NED status. This morning she woke up early with pain in her back around her left kidney. When she went to the doctors today they had to give her 13 mg of morphine to ease the pain. Shes taking duladid at home but shes still having pain. Chass' body is known to have intermitten pain for several days and then just go away. So we're all hoping that this is whats happening this time. She had to get platelets today and she'll get blood and platelets on friday for the holiday weekend.
Last week Chass was ask to write and article for a blood drive to why it was important why people should donate blood. She wrote and excellent paper and her picture was taken. They turned it into a flyer to give out at a blood drive on saturday which we went to. Some people said they never donated till that day after reading her story. She had a lot of fun meeting people and talking to them while they waiting to have their blood drawn. Since it was in a mall of course she wanted to do a little shopping too.
Well hopefully Chass will be feeling better soon and she can update after xmas to tell you what santa brought her. HEHE!! She'll love that.
We will conquer!
Carrie
Sunday, December 11, 2005 7:31 PM CST
Hello Everyone!
I guess sometimes I need a little break from the internet. Well, I cant totally say the 'internet' because I DO get on to check other sites every few days. Well...I had chemo the other week. We only did 3 days this time. By day 3 I had a temp slightly over 100*, a cold coming on, and still hadnt recovered my counts from last time. We might have to eventually move my chemos from 2 weeks recovery to 3 week recovery so I have more time to bounce back. Im ok with that!
So does everybody want to hear a funny story?-Funny to you, embarassing to me! Well, my freind Jessica and I went to the grocery store. She always does the shopping for her house. So, we fill the cart up totally. After paying, we start walking to her car. Well, in the parking lot there are those drain holes that are dipped into the road. She's pushing and it got stuck and tipped over. EVERYTHING fell out. She cant stop laughing, as she sits on the road! Nobody would help us...and we were just standing there laughing. Finally some guy helps us pick the cart up and all the groceries. Trying to add a sense of humor to our embarassing moment, I asked if he thought the eggs would be broke. Of course they were! I guess that what happens when you send teenagers to go grocery shopping. At least her driving is better than that! So after a good laugh, we left and hung out over at her house for a while.
Not too munch medically has been going on so....
I will try to update a little more often. thanks for checkin on me!
We Will Conquer.
Chass
Tuesday, November 29, 2005 7:23 PM CST
Hello!
Sorry for not updating, I try but CB doesnt put it through. I dont know what the deal is. So, all my scans look great-they are showing some improvement. I know I know, how can they get better if there is already no more cancer (NED) Well, see there are still some spots on the scans but there is no way to know for sure if its cancer or bone damage from the cancer. But everything is good and we are still considering it NED because as far as we no, there is no cancer in there. I was supposed to start chemo finally on Monday but since my WBC was still really low, we are delaying it a little more. I go back tomorrow to have them check and hopefully I will be ready then. That would mean Sat and Sun being in the hospital for the last 2 days but its ok with me. I am still really achy and it hurts to get up and at first when I walk. My teacher came today. I handed in some work and we went over things. Finally, the Fauquier County school superviser has gotten things together and arranged it for me to do 1 science class online through Prince William County schools and the other one will be taught by my teacher. We were supposed to go meet with him tonight but he called and said there was no need as he set things up the way they should be in order for me to graduate in June-finally!! Anyways, thats about all on this end. I will update later to tell everyone whether or not I get chemo tomorrow.
Thanks for checking on me as always!
We Will Conquer.
Chass
Wednesday, November 23, 2005 0:13 AM CST
This update is in Honor of James Aaron Appleton, Feb 28th, 1988-November 18th, 2005. He passed peacefully at 10:24pm with his family surounding him. He was in no pain and 'sleeping' at the time. Both sevices were lovely and the 'after-party' was fun. It was so cool when we were being escorted to the cemetary, cops blocked 495 right at the beginning of rush hour. James would have LOVED that, especially since we stopped a school bus. I even got to take a rose from his cofin. I missed the actual funeral because I was getting a PET scan-my final scan for this round of restaging, and the most important one. For me it detects the cancer better than the others. We got a copy and Im no radiologist but it looks like me! The spot on my right shoulder was still there, but it could just be damaged bone. They did it in my line this time, maybe thats why half of my chest is showing up 'hot' which usually means cancer but we think its from the dye being injected into my line. Hopefully we will get the results tomorrow.
So to fill you in on Monday-I had platelets, pentamidine, and a flu shot. I persuaded my doctor to let me get it sub-q instead of muscle but now my arm is hurting like crazy. I had it sub-q last year and it didnt do this, but I guess its my fault for talking her into it. The nurses all teased me but it was funny. Hey! those things hurt. And tomorrow I have to get a muscle shot anyways.
Today mom and I went to the store to get pumpkin pie for Thanksgiving and got a few things for Christmas presents too. Then we came home and wrapped a bunch of them. I am soooo sore for some reason. My whole body aches. Maybe I just need a good night's sleep. Ok so that is everything that has happened and I have nothing else to say! Thanks for checkin on me and have a HAPPY THANKSGIVING!!...HAPPY BIRTHDAY MOM!! (Ill leave your age out!hehe)
We Will Conquer.
Chass
Friday, November 18, 2005 10:31 PM CST
Hello!
My mom was finally able to update...hope you liked it, I really did. I LOVED how she wrote "we will conquer", it really touched me so I think I will start using that saying too, because we WILL conquer. As for others, they conquer in another way. Please pray for my bestest freind from the office, James who will be earning his well deserved angel wings very very soon. He is peacefully sleeping permanatly now and has all his family around him for his last moments-sweet James, may your times in Heaven be grand. This is a very hard loss for both my mom and me as we were very close with James and his mom. I went to camp with him, spent many many days in the hospital together out on the "porch" which will always be remembered in his honor, and all the days at the office we spent, not to mention such a great week at camp this summer. He is such a kind, caring, sweet 17 year old that had some cards dealt that werent deserved. All this crap will all be over soon enough for him.
So, I am out of the hospital which is kinda sucky since I want so badly to be there with James and his mom. We were told earlier it was only family and then he surprised everyone by holding on some more hours but now mom is at work for the weekend. We are both content with the goodbyes we gave him Thursday. I sat with him before getting discharged and we talked, joked, and it was a good "last time" to see him as he was peaceful looking and still coherent and talking.
I went to the doctors today to get platelets for the weekend and then will return Monday for more and pentamidine and then Tuesday for a PET scan and Wed to tank me up for the holiday weekend. Lets hope with my low counts Ill make it through the weekend. Im am still very neutropenic and low on the other stuff too. I will update later as I hear more about James, for those who would like to know! thanks for checking on me!
We Will Conquer.
Chass
Tuesday, November 15, 2005 10:38 PM CST
Hello Everyone!
This is Chassity's mom. I've tried to update a couple of times and so did Chass but we couldn't get into caringbridge or it wouldn't let us save it. So hopefully this on goes through.
Chassity was admitted into the hospital last monday with fever and pain. We've been here ever since. we hope to leave by thursday. She's been on a PCA pump for pain so they have to ween her off before they will send her home. The fever is gone and the pain is getting better. While being in the hospital they started doing all the scans for the restaging that was to take place next week. Since her pain seem to move around her body they were afraid she was relapsing. She had a bone scan that the results looked better than the last time. A CT scan that was clear. A MRI that so far looked good but still waiting on the offical report and a Bone marrow biopsy and aspiration that the results aren't back yet but the doctor said she didn't see anything when she looked under the microscope. Chass is scheduled for a PET scan next tuesday and that will really tell us whats going on. If everything comes back clear then they think that the Neulasta shot is causing all the pain and they will switch her back to Lukine shots. So thats whats been going on for the past week and a half. Sorry to make everyone worry but caringbridge wasn't cooperating with us.
This evening the hospital had a remembrance ceremony for all the little soldiers that has died in the past 2 years. So I wheeled chass down there to it since we lost so many kids this summer. It was really nice that the hospital does this every year but it was a little over whelming. Chass lite several candles for some of her friends that have past. She was in the wheel chair cause of some pain issues but when it was time to lite a candle she walked up to do it. I am very proud of my daughter. She is one of the most caring and compassionate person you could ever know.
I just wanted to say Happy Birthday to Dylan and as soon as we break free from here your present will be in the mail.
Zach, we think of you always and hope you have a great time at Dinsey.
Nick, I hope you feel better soon and enjoy the POU. Chass spent time there too after her surgery. It's a really great place to be if you have to be in the hospital.
And we are praying and thinking about everyone else thats fighting the cancer beast and their families.
We will conquer.
Carrie
Friday, November 4, 2005 6:26 PM CST
Sorry for no updates, Caringbridge wasnt letting me in.
I have had chemo all this week along with blood and platelets. I have been having some pain in my arms and legs. For a while it was mostly my right should (the one I had cancer in) so an MRI is scheduled for Monday. In about 2 weeks I will also get a full body MRI with my regular restaging scans which are going to possibly be in New York. We are considering a new protocol up there. I have a new pain med for the weekend so we will see how that works. My legs and feet and ankles are really bothering me today. I havent been feeling very well. Just worn out from chemo and in pain and stomach problems. Id update more but Im not feeling so great, need some rest! Thanks for checking on me!
XOXO
Chass
Sunday, October 30, 2005 1:04 PM CST
Hello Everybuddy!
Friday I needed platelets so I got them. I was getting low on blood but since I wasnt type and crossed, we will hold off until tomorrow. Maybe it will even be on the rise! Im not really symtematic so we'll see. The first Halloween party at the office was fun. Most of the staff dressed up and it was pretty funny. Im supposed to dress up tomorrow-its a secret though! hehe! Saturday and Sunday I spent most of the day with my dad. We did our weekly grocery shopping and he needed some sweaters and winter shoes so we went to do that. My brother wanted a turkey dinner with all the trimmings so we had a pre-Thanksgiving today. He did a good job considering he did all the cooking him self. It was really good. Yesterday evening I hung out with my freind Jessica for a few hours. I helped her hem up her Halloween costume. Besides all that I have nothing to report. I hope everyone had a nice weekend. Tomorrow starts another round out chemo plus the transfusions-its will be a long day! I will try to update in the next day or so.
** Ok so I have a huge favor to ask. I need some help in being part of keeing such a great family in the states for the 6 year old's cancer treatment. Its really a small task for most-they need money. I have mentioned Dylan and Melissa before. Dylan has neuroblastoma like me. They are from Austrailia and if they cant keep their medical money account at a certain level, they could be sent back. Now, Austrailia has nothing to offer as far as treatment for Dylan. His only chance of survival is to stay at Slaon and be treated. They just started a new protocol and his scans are improving-he NEEDS to stay. This family is very special to me. His mum Melissa has always been there to send me little gifts to help cheer me up. After having to raise half a million dollars just to get here for a consult, they are now facing a possibility of being sent home. Dylan and his family have been through sooo much to be forced to give up now. Please visit his site and give ANYTHING-send your pocket change-it all adds up! www.caringbridge.org/me/dylanhartung - such a great family deserves a chance-help give them that! Thanks so much!**
Thanks for checking on me!
XOXO
Chass
Thursday, October 27, 2005 7:09 PM CDT
Hi!
Tuesdays appointment went well. I only had 4 platelets so I needed a transfusion. Everything else was fine. Im not nuetropenic anymore! Wed and Thursday were off days and we cleaned and did normal stuff. I worked on some homework and my teacher dropped off 4 books for me to read for literature. Ive started my first one- Pride and Prejudice. Its kind of hard to understand who is who and who is family with you,etc.. Hopefully it will get easier to understand as I go. I also got this book from the library to read on my own time. It has 3 novels in it and they all have something to do with wishes from ill people about my age. It seems enteresting. Well I go to the docs tomorrow for counts check and maybe products, hopefully just platelets if anything. We want to take Ricky as long as he isnt sick and all. I will update sometime during the weekend!
Sign the guestbook to let me know you have stopped by!
XOXO
Chass
Monday, October 24, 2005 4:13 PM CDT
Hello Everyone!
Today was a lllooonnnggg day! It was tons of fun too. Mom and I went shopping and got a TON of stuff! We went to Toys R Us, Costco, Petco, WalMart, and Foodlion! My feet are killing me now though. Im not used to all that walking. Toys R Us is soo much fun, I wish they had the same toys back when I was a kid as they do now. We had to get some extra thing for Growing Hope (my office's organization) which was lots of fun...I love spending money, especially if its not mine! Tomorrow I will go to the doctors for a counts check and possible transfusions, hopefully it will be a short day. I will either update tomorrow after my appt. Oh yeah, I wont be getting scans this week as planned. Since Im doing well with no weirdo pains, we will do them after the next chemo which will start Monday (Halloween!) Well I am off to do some school work and study!
** Ok so I have a huge favor to ask. I need some help in being part of keeing such a great family in the states for the 6 year old's cancer treatment. Its really a small task for most-they need money. I have mentioned Dylan and Melissa before. Dylan has neuroblastoma like me. They are from Austrailia and if they cant keep their medical money account at a certain level, they could be sent back. Now, Austrailia has nothing to offer as far as treatment for Dylan. His only chance of survival is to stay at Slaon and be treated. They just started a new protocol and his scans are improving-he NEEDS to stay. This family is very special to me. His mum Melissa has always been there to send me little gifts to help cheer me up. After having to raise half a million dollars just to get here for a consult, they are now facing a possibility of being sent home. Dylan and his family have been through sooo much to be forced to give up now. Please visit his site and give ANYTHING-send your pocket change-it all adds up! www.caringbridge.org/me/dylanhartung - such a great family deserves a chance-help give them that! Thanks so much!**
Thanks for checking on me!!
XOXO
Chass
Friday, October 21, 2005 8:37 PM CDT
Hello Everyone!
Last night was kind of crappy. I was low on blood and definatly feeling it. I stayed in bed all evening and then headed to the office today for some transfusions. I got 2 units of blood and a unit of platelets. It was a long day. Mom had to be at work by 6 so at about 15 til' my dad got there to finish up and take me home. With traffic we didnt get home until almost 8! Yuck! Im feeling a lot better, just a little tired from the long day and meds. I have been having some bone pain from my neulasta shot (GCSF)
** Ok so I have a huge favor to ask. I need some help in being part of keeing such a great family in the states for the 6 year old's cancer treatment. Its really a small task for most-they need money. I have mentioned Dylan and Melissa before. Dylan has neuroblastoma like me. They are from Austrailia and if they cant keep their medical money account at a certain level, they could be sent back. Now, Austrailia has nothing to offer as far as treatment for Dylan. His only chance of survival is to stay at Slaon and be treated. They just started a new protocol and his scans are improving-he NEEDS to stay. This family is very special to me. His mum Melissa has always been there to send me little gifts to help cheer me up. After having to raise half a million dollars just to get here for a consult, they are now facing a possibility of being sent home. Dylan and his family have been through sooo much to be forced to give up now. Please visit his site and give ANYTHING-send your pocket change-it all adds up! www.caringbridge.org/me/dylanhartung - such a great family deserves a chance-help give them that! Thanks so much!**
XOXO
Chass
Wednesday, October 19, 2005 2:26 PM CDT
Ok I guess I should update today. I felt fine so Monday we canceled the doctors appointment and got the water problem fixed. Finally, we are able to use the water without worrying its going to run out! Then Tuesday, I went to the office to get platelets and pentamidine. I slept most of the time. When I woke up after the pentamidine, I was really nausous. (even after a premed of kytril was given) So, they gave me some IV ativan which worked. After all the benadryl, ativan, and atarax (which also makes me sleepy) I walked out of there perfectly fine and stayed awake until bed time! After the ativan I felt fine the rest of the day. Today I slept in late. I worked on some homework and had a nice phone conversation with a freind who's son (Dylan) has NB. So, besides that not much else has happened. My sister and nephew are supposed to come over tonight and tomorrow if my appt is short, we will go shopping! FUN! Thanks for checking on me!
XOXO
Chass
Sunday, October 16, 2005 7:12 PM CDT
Hey Everyone!!
I have had a nice weekend. We continue to have water problems. Water then no water. We might cancel my appointment tomorrow (as long as I dont feel wiped out or bleeding) so that we can get somebody to come and fix the water once and for all. Im feeling fine...sick of the antibiotics but feeling fine.
***Ok so I have a favor of everyone! My freind Carolyn who is 6 (I think) really wants to run in the KIDS CHARITY FUN RUN. She has beaten Neuroblastoma at a young age. This is very important to her and her family to run in this marathon. Let me explain a little: it is in New York the first weekend in November and its done to raise money for the Ronald McDonald house up there. As most of you know, I too stay at the Ronald when in New York. This place has become a home away from home for everyone who stays there for long periods of time. I mean some families are there for years. Most people cant afford the price they ask you to pay (mostly a donation) to stay there so it goes unpaid. This House holds 84 families and sometimes there arent any rooms left. Its a great place but being so full of families from all over the world, it often goes unnoticed that this place needs some money. Some minor adjustments would be great, not to mention the normal money just to keep this plave running. PLEASE donate if possible-ANY amount would be soooo great!! You would be helping sooo many people around the world who stay there. So that is my favor! You can visit Carolyn's page for more details and a site to go to to donate! Please donate! Thanks!!! Carolyn's website- www.caringbridge.org/va/carolyncoveney !***
XOXO
Chass
Saturday, October 15, 2005 4:48 PM CDT
Sorry for no updates in the last few days. Caringbridge wasnt letting me into my site and many others so now its finally working. The rest of the week getting chemo went fine. Thursday my teacher came to give me some assignments. I have been working here and there on them. Geometry is what Im having problems with right now. Its a bit hard to learn it alone. My teacher should be coming a day next week (I think) to collect my work, give me more, and help me with what I need help on=GEROMETRY!! Friday was a pretty long day at the office. I had chemo in the morning and two units of blood in the afternoon. We have decided to continue the antibiotics until tomorrow night just so we dont risk fever over the weekend. My mom works weekends and if my dad took me to the hospital, that would leave Cody??? So, we think staying on the antibiotics is whats best. My next appointment is Monday for counts and probably some products. Oh yeah...the water people are here checking it out. Our water pressure totally went out today, we have no water but hopefully it will be all better soon! Ok, so thats about everything that has happened on my end. I hope everybody enjoys their weekend!
XOXO
Chass
Tuesday, October 11, 2005 10:50 PM CDT
Hello!
Im a really tired right now but got a late start on my antibiotics so Im trying to keep myself awake until they are done. I guess Ill update you on my day. Ive had some good, bad, and frustrating times today. Lets start with the frustrating-first of all it took me SIX times to sign in, get denied and then try again before getting INTO my site. And earlier today we found out that I might not be going to NY for my next set of scans. I wasnt too happy because I had told a few people this in hopes of getting to meet up with them while there. Also, we found out that they want me to have a whole year of chemo AFTER being declared NED BEFORE starting this new treatment (the vaccine). As of now, Im only at 6 months. 1/2 way there. It sucks because chemo is just getting harder on me. Im not bouncing back as easily and feeling crappier afterwards as before it didnt even bother me. And the whole infection thing is a help with that, not to mention my number of lines possible to get is running low after having 3 removed so far. Now, the bad stuff-Only the fact that I had a headache for most of the afternoon which could be because my blood is dropping. But still it was miserable. Now the GOOD- I got to see my little buddy Parker at the office. That was great since I hadnt seen him in a few weeks. Then I got a call from one of the docs (while at the office) which was a bit funny to everyone. Of course they bombarded me with questions when I got off the phone. She wanted my website, which made one of the other docs want it. It was just all funny. Then when we got home, my sis and nephew were here which is always a good thing. I love him soo much, just everything about him. I cant wait until he gets a little older and more lovey dovey. Right now he wants to be on the move which is tiring but fun. Also, I got a phone call from Lori ( my best buddy Ry's mom) which was soo nice to hear from her. I miss Ryan soo much!! He is my little hero-such a strong little boy he was! Also, a girl from the office brought a cake to celebrate her last day of treatment-it was awesome. We need more of those celebrations! Well, I still have about an hour left to my antibiotics so maybe I get a little sleep! Thanks for checking on me. Please sign the guestbook!
Goodnight!!
XOXO
Chass
Monday, October 10, 2005 9:12 PM CDT
Ok just a quick update:
Everything went well with chemo today. I slept on and off throughout the day and only got nauseous a few hours after the chemo. I had to get lots of hydration (before and after chemo) because my pee wasnt at a good number, no matter how much Id drink. Hopefully tomorrow will be a quicker day at the office. I did get to see a mom (whos son passed away earlier this year) which was such a nice surprise. It was really good to see her. Margy ordered pizza at the office which was nice even though I didnt eat much because I want too hungry. Oh and the best part was that since people keep taking the DVDs from the office home..Margy asked mom and I to go and buy a certain amount of money worth of DVDs which was lots of fun. It always fun shopping with somebody elses money!! hehe! So we came home with 20 new DVDs! Anyways, that was my day. And to remind those who forgot, I am at the office EVERYDAY this week for chemo, so Ill see you there!
Thanks for checking on me!
XOXO
Chass
Sunday, October 9, 2005 3:16 PM CDT
Hey!
Ok I promised to update before the weekend was over so here it goes....
Friday I had to go to the doctors to get those platelets. I was soooo tired and ended up sleeping the whole time. We came right home so my mom could get some sleep before work and I slept some more. I was really tired.
Saturday my dad and I did our usual grocery shopping after dropping Cody off at his cousin's house. They were supposed to be bow hunting. I hope they dont get anything, yuck!! Then me and my dad just hung out at home and wathced movies. Mom was working.
Today I woke up to a freshly cooked breakfast by dad. (peace and quiet with no Cody) and then me and Dad headed to Manassas to do some clothes shopping for him. He needed some new winter clothes. Without much luck, we left to get mom's oil change-that was a blast! (sarcasm) Now Im home and dad is picking Cody up. Mom and I are going shopping. (maybe back to Manassas) and hit the sales up. I shop for myself better with my mom not dad...but then again most girls would. hehe! It was a nice day, good to be out and about before starting chemo tomorrow. Ok well gotta run. Sign my guestbookk so I know you stopped by! Thanks!
XOXO
Chass
Thursday, October 6, 2005 11:50 PM CDT
Hello Everyone!
Well yesterday was a day full of nothingness. I helped mom clean for a few hours and then made dinner but besides that, I pretty much did nothing. Today I was looking forward to my teacher coming mostly because I was just soo bored that I figured at least homework would keep me busy but she called and canceled. She was sick and knew not to come, plus she just didnt feel up to it I guess. She did give me some work to do in US Government though. So far I got almost 2 chapters worth of questions done. Not too bad!
Then, mom and I went to the office to buy groceries for the office. That was fun. We got Ricky some things for his birthday. Then, we headed to the office to drop everything off. My primary doctor saw me and asked how I was. When she found out that I wasnt in for an oppointment until Monday for chemo and a count check, she wanted to know what my counts were on Monday. Since my platelets were 26 then, she had them do a quick finger poke to see what they were now. Grrrr!! They were 16!! I KNEW she would NEVER let me go the whole weekend without platelets so.....I have to come in tomorrow morning for platelets!! MAN, sooo close to having a whole week off. Oh well. We have an early appt and hopefully it will be quick. Traffic coming home was terrible. There was an accident and we were sitting almost still for an hour! Sheesh. But that was about it today. Jamie and Ricky are here tonight so I played with him and chatted with her which was nice. I get so frustrated being home and doing nothing so today was a nice day. I will update sometime this weekend.
Thanks for checking on me!
XOXO
Chass
Tuesday, October 4, 2005 11:27 PM CDT
Hello!
I think today was the longest day of my life! BUT, lets start with yesterday. I had a doctors appt. that was probably my quickest ever. We were in, got blood drawn, saw the doc and left. I needed nothing! Amazing. My platelets were 26 but we think they are on their way up so Im not back until next Monday for a week of chemo. WOW, I cant remember the last time I was off for a whole week. Its nice though. So, today started off pretty early. We got up, got Ricky ready, packed up and headed to PA for the day. My grandma lives there and we were going to visit. Its only a 3 hour drive but I was soooo tired from the night before (I watched Ricky) so trying to keep him awake so that he would sleep tonight didnt last long as I fell asleep on the way too. So, we got there and my grandmas house isnt exactly "baby freindly" so I kept him outside a lot. Then we went to my uncles new house which was nice and being worked on so the tools laying around werent "kid freindly" either. LOL! Mine and moms hands were full today. We also got a headstart on some Christmas shopping. We are totally done with Ricky but then before leaving we realized-DUH his bday is in a month!! Sheesh I guess we have some more shopping to do (not that Im complaining) So, then my grandma gave us some stuff that she didnt want since she will be moving soon. Once, more we loaded up the car and set off back home. I was exhausted from the day and passed out right away, same with Ricky. Poor mom was exhausted too, but had to drive. It was a nice day and I really enjoyed something different than the doctors and hospital so all in all it was worth it. Tomorrow I have nothing planned so I probably wont update until at least Thursday night after my teacher comes. For the first time, I will be getting some work this year, while everyone else will be getting their first report card. I guess I have some catching up huh? Well thanks for checking on me, and sign the guestbook!
XOXO
Chass
PS-Unfortunatly another little girl with NB gained her angels wings this morning. Please pray for Madison's family as Im sure this is the worst day ever for them.
Sunday, October 2, 2005 8:11 PM CDT
Hello All,
My weekend was fine. I was extremely bored though. Saturday was my usual grocery shopping day with my dad. Every Saturday thats what we do. I enjoy doing it and if I dont, the guys will come home with "guy food"! Then, my sister and nephew came that night. He was sleeping so her and I talked until early morning. I spent the day helping out with him while Jamie slept for work tonight. And thats about it! Nothing entertaining happened. I just wanted to update to let everyone know Im still here and doing ok. I have a doctors appt tomorrow for a counts check and maybe products. Then, on Tuesday my teacher is scheduled to come and give me work for the first time this year. Im soooo bored that I wouldnt mind some homework right now, of course that will change after Tuesday!
Thanks for checking on me!
XOXO
Chass
Thursday, September 29, 2005 11:06 PM CDT
Hello!
IM HOME!! YAY! It feels sooo good to be in my own bed. Normally I would be just starting my night in the hospital but in the comfort of my own bed, Im ready to go to sleep right now.
Before I forget, I want to ask a favor. A little girl is in NEED to prayers. Her name is Madison and her website is: http://www2.caringbridge.org/la/madison! Please pray for her and her family.
**Also I want to wish a HAPPY HAPPY BIRTHDAY to the MOST beautiful Angel in Heaven!**
Ok, so on to the boring medical stuff, I am getting Rocephin and Vancomycin IV at home. We have decided to delay chemo by a week which means next week would be only count checks and blood product days. (Lori-sorry I meant to call you today to tell you this!hehe) Also, there is a new treatment plan for the future (as of this moment) Everything was through email and then to my mom so I dont have all the info but it sounds like I will be getting another round or 2 of chemo, restage (in NY?) and then in 2 months a new protocal opens (in NY). Its some kind of vaccine: where I would get shots (thru my line) every so often....but like I said I dont have the details, just thought Id share because it sounds like treatment might be coming to an end as long as everything goes well. (we can see the light at the end of the tunnel) Its a scary, unknown light, but its a light!
Ok one more prayer request. Its for my freind Ashleigh (a NB freind) whose scans just showed some tumor and she and her family need prayers to get them through this difficult dicission making time to give her the best life possible.
Thanks for checking on me! Please sign the guestbook, I love to read the entries!
XOXO
Chass
Wednesday, September 28, 2005 8:51 PM CDT
Sorry Sorry Sorry!
I have gotten a few calls today and some guestbook entries letting me know how I have been slacking on my updates! I actually did update last night but something happened and it didnt show up-sorry! So, since Friday a lot has happened. From all the antibiotics, I got diarriah which had to be tested and all negative before imodium could be taken. After 4 1/2 days, the last test came back negative and after 1 dose of it, the diarreah was gone!!-YAY! I was on a morphine drip for the headache for about 2 days. The sedated me for a MRI of the head to see what was going on but everything came back normal. After what seemed like forever, my blood cultures came back saying that I had my usual Staph Epi and also strep of the blood this time. We are now down to only 2 antibiotics so thats a plus. I was supposed to be discharged today but last night went all wrong! I started getting a temp of about 99-100 so tylenol was a no-no to make sure we didnt mask it. But I was having a bad headache so after 2 doses of morphine, it was better. Then my temp went up to 101.1-YIKES!! Time and tylenol brought it back down but its been running in the high 99s and low 100s all day. I got platelets today and the doc said that discharge is likely in the morning. My counts showed my hgb was only 9.6 which meant I SHOULD have had blood today but why I didnt, I dont know. So, I will definatly need it in the morning as they dont let me go below 10 without transfusion. That will put us to around noonish or later. Im supposed to have chemo next week (it feels like I just had it) so hopefully there wont be a delay on that. Besides all that the only other thing I can think of to say is that Ive been nauseus a lot and havent had much of an appetite. The hospital usually does that to you though! I am getting really sick of being here and cant wait to get home in my own bed!! I think I would feel sooo much better then!
Again, sorry for the delay in updates, I just cant get in the mood while in the hospital.
XOXO
Chass
Friday, September 23, 2005 7:21 PM CDT
Hello Everybuddy!
About that headache, I was up ALL night with it. Between taking pain meds and taking my temp and all the weird dreams from the pain meds, I didnt get much sleep. My temp slowly went up through out the night and by about 7am it hit 100.5!! Thats when it started shooting up. By 9am it was 101.8! Well, we knew I would get admitted so before leaving for the office, we packed a bag. I had such a bad headache plus the chattering of my teeth...that made it much worse. They gave me a bit of morhpine and lots of hydration. Of couse they drew cultures too. My blood pressure was pretty low by then. I had a dose of antibiotics before we left. They wanted me to be taken the whole 5 mintues to the hospital from the office in an ambulance but I didnt want that. I must not have been too unstable for them to leave it up to me. Mom and a nurse helped me walk to the car as I was dizzy and off to the hospital we were. My nurse was waiting to wheel me up to my room while mom registered me. They drew cultures again, geve me a dose of morphine, and started a saline boluss (sp?) Blah blah blah....I dont remember too much because I slept from the morhpine and benadryl. From those 2 meds and all the pain meds from the night beofore, any noise would startle me awake and scare me really bad. We are waiting for the culture results to come back to see if its another line infection. Lets hope not! I will get a head MRI with sedation tomorrow to see what the headaches are from. Im on 3 different antibiotics a day (2 with benadryl) plus tylenol for the fever and morhpine for the pain. I havent had a bite to eat today and waiting for the nurses to order with me. Sorry if this entry is a little scattered or confusing but the meds are really getting to me. Anyways, thanks for checking on me!
XOXO
Chass
Thursday, September 22, 2005 8:01 PM CDT
Hello!
Today was a VERY long day at the office. I needed 2 units of RBC and a unit of platelets. No reactions but had a bit of pain. First, a headache that Tylenol #3 didnt help, then another tylenol #3. Possibly for taking that on an empty stomach my upper stomach started hurting really bad. Also my right shoulder did. After a while of waiting, they fave me a little morphine. As my nurse was pushing it, the pain got very intense and I couldnt sit still. After about 15 mintues, I calmed, and so did the pain. We did a dressing change to check my new line and took the stitch out. My chest is really raw from changing the tegaderm so often so we tried somthing new. I forget what its called but its a think peice of tape to my skin that will stay on for over a week and then the tegaderm just sticks to that. My stomach and shoulder pain started up again but with time it went away. Then I had a headache again! When is it going to end?! My temp had started out at 99.4 and stayed between there and 99.8 through out the day. The headache gor increasingly bad on the way home and to the point I needed a Percocet. A short while ago, another was needed. Nothing seems to be helping right now. My temp is still up there and has been for the last week or so. Lets hope Im not getting sick or anything. I cant afford another line infection! Well that all I have to say for now. Im going to try to sleep of have mom rub my head and hopefully that will help the headache. Thanks for checking in on me!
XOXO
Chass
Tuesday, September 20, 2005 10:20 PM CDT
Hello Everyone,
Im going to try to keep this short as I am extremely tired and have been for HOURS now!! Well, today I only got platelets and pentamidine. Everything went well with only Atarax for the platelets and we did that for the pentamidine too. Well as that was just starting, I was having difficulty getting a good breath in. I had to suck in a lot of air so get what felt enough. So, mom stopped the meds, got the nurse, who took vitals, told the doc, who said to give me more atarax. They had the pulse ox on me which was saying my numbers were a little lower than they liked and I was falling asleep which dropped them even more so then benadryl was the next step. That definatly put me to sleep which made my numbers stay low. All was good though. An hour long med took me 3+ hours to get. I was tired from all the meds so I slept. Well, then I got my normal numbness from the pentamidine so more benadryl was given, and yet I slept more. We didnt walk out of there until after 6:30pm!! Im fine now but have been SUPER tired all day. Oh yeah, to top things off, I got a headache which was another "check vitals quick" thing. Tylenol, and tylenol #3 were given and after the benadryl, I slept which helped. So, as you can see, it was a long, eventful day. Hopefully we wont have one of those anytime soon again. I return to the office on Thursday for 2 units of blood and if blood bank has extra, 2 units of platelets to hold me over the weekend. Hopefully Friday will be an off day before returning on Monday. Friday afternoon my teacher comes for the first load of work to give me. Thanks for checkin in on me again, Im off to bed!!
Goodnight!
XOXO
Chass
Monday, September 19, 2005 7:07 PM CDT
Hello!
Today was a pretty good day. We took Ricky to the doctors with us which luckily got us out of staying to get platelets. I think my blood was lower than what the counts sheet said, I was probably dehydrated. I was at 10.6?...but I think I need blood. I have been getting the headaches, tired, and out of breath-all signs (for me anyways) of needing blood. We go back tomorrow for platelets as they were only 19 today. Technically I should have stayed to get them but I wasnt bleeding, no brusing, and we didnt want to stay with the baby all day, especially if I had to get benadryl. That would have been a nightmare. I get very irratible and of course tired, but also restless and have a hard time falling asleep. I told the doc that thats why I didnt want to stay and apparently she didnt know it made me feel this way because now, tomorrow we will try only atarax...which I used to get with me platelets premed combo before but never alone...we'll see how it works! Then we came home and cleaned! FUN FUN I tell you! haha! Between cleaning and helping with Ricky, I was exhausted and sleepy from getting up early. Then I cooked dinner and faught with my brother the whole time which is pointless. (he is always right....*sarcasim*) Then I went with my mom to drop him off with his freinds family at a bowling alley. THEN we went to the store because we needed household items and pet supplies. And Now....I am finally updating and eating at the same time. THEN I will be going to sleep. I am sooo tired! I say this now but knowing me, I will end up snapping out of it and being wide awake all night long!
Anyways, thanks for checking in on me once again! Please pray for my freind Zach who has been in lots of pain for some times now. I just want him to painfree and happy!
XOXO
Chass
Sunday, September 18, 2005 11:21 PM CDT
Hello Everybuddy!
This weekend has been pretty nice. Saturday, my dad and I did the grocery shopping. It took longer than usual with more money than usual. (I guess thats what happens when Im away one weekend and the guys do it alone!!) So it was like 2 weeks worth of food in one trip! MEN!! lol! The rest of the day I just hung out at home doing whatever. Sunday was a very lazy day for me. I didnt even get up until quarter to 2pm! Then I have stayed in bed all day watching TV or being online...how fun. I seem to get lightheaded or out of breath when getting up, especially when I took a shower! Also, Ive been getting headaches throughout the weekend. Thankfully tylenol alone is getting rid of them (with some sleep)!! This is all signs of low blood but could be side affects to my Neulasta shot that I got Saturday evening. I guess we will find out tomorrow at the doctors. The one day my sis is off work, we will be gone all day. I have fun spending DAY time with them. Oh well. A few times this weekend, I got sad. Im really missing Ryan and it sunk in big time yesterday that my friend from camp is really gone. I was unable to go to the services and am now regretting it but too many funerals so close together is going to take its tole on me. In the long run, I think I made the right choice. I felt that my last time seeing her was a good way to remember her so I feel ok about it. Anyways, thanks for checking on me and I will try to update tomorrow after my appointment if Im not too tired!
XOXO
Chass
Friday, September 16, 2005 9:55 PM CDT
Hello!
Did you know that putting a 10 month old to bed is painfull?? Well, I just found that out. Ricky was very restless tonight and he kicks and punches when he is. My chest is still sore from having the line put in, well now it is even more sore!! Oh well! He is sound asleep now! I had my last day of this round of chemo today. I also needed platelets. Ive had a headache most of the day and now its back but maybe a tylenol will help. Not too much else to write about. Oh yeah...my WBC is going up and up and up (during a week of chemo) and along with my temp staying in the low 99s, my doc decided to draw cultures today just in case. For those who dont know, your WBC (white blood count) is supposed to drop during chemo and since its rising, there is a possibility my body is starting or getting ready to fight something off, like an infection. Lets hope not!!
Thanks for checking on me!
XOXO
Chass
Thursday, September 15, 2005 7:33 PM CDT
Hello All,
Please continue to pray for my freinds family. Today was an office day. It was a very very long day but went well. I got chemo but since there wasnt many nurses, they were super busy. I got a bit of a headache but soon when away. Ive had some nausea on and off today but with no meds, it still seems to pass. I go back in tomorrow for another day of chemo and blood products. I had some laughs with staff from the hospital today while they were at the office for the weekly meeting. I was really missing Ry today as I was in "his" curtain room for the first time since hes died. I just miss seeing him daily.
Thanks for checking on me!
XOXO
Chass
Thursday, September 15, 2005 0:27 AM CDT
Hello,
I have another prayer request. A freind passed away on Monday and since I was asked to not put names on here, I cant give you a name to pray for. God knows who we are talking about though. The family is in need or prayers to get through this rough time. I was prepared for this to happend and Im relieved that she is in Heaven and not dealing with the pain and just all the crap that goes along with cancer. She is happy and being a normal teen. Since finding this out, Ive been thinking a lot about her and my little buddy Ryan, who I miss desprately! Its been a rough few days but Im doing ok!
Now for the medical stuff- It was a very stressful day on Monday. I so didnt want the PICC line but had to have it. We got to the hospital at a little after 11 for a 12 oclock surgery. Registry didnt have everything together which delayed it. Then, they hadnt had things preapproved by the insurance so we just went straigh to the surgery waiting area. Then, the PICC line people didnt even know about me. The anistesiologist called to inform them and they came as soon as they found out. THEN there was no orders written by the doc and something was wrong with the fax machine. Somewhere between the office sending the fax and the surgeons getting it, it was lost, many many times. By now is was 3:05 and the anistesiologist was technically supposed to be only working on emergencies but said he would give us until 3:15 to have orders to do it, since he was off then. I was hungry, mad, and getting upset at the fact I was going to have to do all of this again the next day. Of couse my mom was mad. Taking things into her own hands, she called upstairs to my oncall onc doctor and she ran downstairs to HAND then the orders. Even though it was later than 3:15, it was done anyways. I cried while they sedated me. It was just so upseting. So, when they wake me up, the PICC lady asked the recovery nurse "have you told her?" She said since I just woke up, no. So I then found out that it didnt work (the PICC kinked from scar tissue) and it would have to be pulled. I thought I was going to go crazy. My mom came in to hold my hand while they pulled it. Then the nurse wanted to take my peripheral line out. For those of you who know me wont be surprised to know that I argued. It was not their property as the office staff placed it, so after a few minutes of me argueing my point she left it. It was a good thing because about 3 minutes later, someone from the office called us (in the PACU) to inform us I was being admitted!
Well, a central line was placed the next morning and I am very sore. I have never been so sore from such a small prodecure!! I stayed last night to continue getting painmeds plus I got my Wed dose of chemo early in the morning so it was like we had the day off. I slept all day as I havent been feeling myself. I have even been told that I "look like crap" lol....I really did though!!
My sister and nephew are staying with us until she gets a new house. Ricky is a handfull and does NOT want to sleep over here. It was a mess. My sister and I stayed up and had talked until a few minutes ago which was nice as we dont often get to.
I have an appointment tomorrow to get chemo and hopefully nothing else. It will be a fairly long appt since I am getting both chemos and need post hydration.
XOXO
Chass
Sunday, September 11, 2005 2:26 PM CDT
I am back home!
The beach was sooo much fun. I cant wait until next year to do it all over again. Except next year we plan to stay in a different part and have freinds with us. I got to swim in the pool twice and go in the hot tub and go down to the beach and go shopping and eat out and just relax. Last night we drove up to Corolla and stayed with Lori, Greg, and Evan which was lots of fun. Evan is so full of energy-I love it! I played with him which was so awesome. I love little kids and thats one thing I really miss is being able to babysit. (which I did daily before diagnoses) I guess I forget how much I love kids and playing with them. Of course Lori and Greg were fun too! lol! Lori has an addicting laugh...once you hear it, you gotta keep her laughing! And Greg tells awesome stories, I could just sit and listen to him talk for hours and thats exactly what we did. Mom, Greg, and I stayed up until 3am talking about anything and everything. I hated to see morning come because we were having such a good time with them. Oh yeah, and their dog Dopey!! Hes a cool dog...and loved the beach! We had food from some BBQ place which was really good. It was just a really nice, relaxing evening. The whole trip was fun. I wasnt especially thrilled about the whole PICC line thing but whatever. Whats one more thing I dont want done gonna hurt? Good luck to the nurse who has to start a peripheral line tomorrow...Im soo bruised up from being poked. My veins are horrible so it usually takes a few trys and many bruised veins before getting a line in. I guess its good to be home....well not really! haha! Id so much rather just stay at the beach forever! But I cant. Tomorrow I have to get a PICC line placed (at the hospital and i have to get put to sleep) chemo (which takes all day) and more than likely platelets and maybe blood. Im not too sure how all this is going to fit in but my guess is that there will be an addmition. We'll see! Ill update then to let you know!
PS- lets hope that that hurricane skips over the Holts so that they dont have to come home early!!
XOXO
Chass
Friday, September 9, 2005 11:22 AM CDT
Hello Everyone!
Sorry for no updates over the last few days. I will try to catch you up to whats been happening. Wednesday I slept until early afternoon. I guess I needed it, I was really tired. Then mom and I went to the Avon fishing peir to look at the ocean and it was really cool. I, afraid of heights and that didnt bother me (as it usually would) but the swaying of the peir was making me a little on the nauseaus side so we headed off of it. We looked inside at the souveneir stores and I think I wanted EVERYTHING! We ended up getting Chinese Food after finding out the BBQ place we wanted was closed. The people parked next to us had this really pretty black lab that they let me pet. The lady said oh she loves people and the attention...I replyed that "I do too!" It was funny! Then we headed back to the beach house for the night. I stayed up literally ALL night. At 6am we had to leave to head to the hospital...dont worry it was a planned trip. It takes an hour to get there and then I needed type and crossed for platelets. We got there at about 7am and for ONE unit of platelets, we didnt walk out of there until 5:30pm! I slept the whole time beacause I was tired from being up all night plus the benadryl. When we got back, mom and I walked down to the beach to collect seashells and smoothed rocks. I think its svery theraputic to just feel them! So then we came back and just hung out for the rest of the night. I talked to a freind from school and a freind from the office. It was after midnight before I got off the phone! Then I stayed up reading magazines and watching TV. My grandma hasnt left the house the whole time we have been here due to a bad neck. It has been giving her bad pain since we left VA. She is feeling better today and is going to come with us to souvenier shop. FUN! ANY kind of shopping is fun!
I have been informed (not asked) but told that I will be getting a PICC line on Monday. Something I never wanted to get...I am just not pleased to have something in my arm. My upper arms (near my underarms) neck, belly, and shoulders are places I HATE to be touched. I was never like this before but I think it has to do with-my apheresis cathedar in my neck, surgeries in my belly, shoulders from radiation/relapse pain?, and underarms because 1 I am tickelish and 2 the docs always have to check them for lymphnodes. I would even rather get a port which Im not thrilled about either. But, because of having breasts it will be hard to access with extra tissue. Not too sure about that one since I have known MANY women who have had ports but whatever. I was supposed to spend some of next week with Lori and Greg at their beach house and even got Dr G to let me off the hook with chemo for an extra week so how all this happened...Im not too sure. Apparently they have already set all this up (without even asking me) But they say I cant get Cytoxan (chemo) through a peripheral IV. I am NOT happy about this PICC line thing but having no say in important things like this, I have no way around it. They dont even want me getting my line back for a long time. They want the PICC to last as long as possible, which for me is even worse. Since, I keep getting the same line infection every time, a CVL isnt top on their list.
Please pray for my freind Zach who is being soooo strong and going to school even on great amounts of pain, nausea, and hydration IVs.
Also, for my freind Dylan who is in hospital and has a temporary line placed that he is not happy about either.
Ive been asked that because of HIPPA laws, to not put names of people (from my office) on here, so please pray for God to bless everyone that we cant! And sorry if I have offended anyone for doing so. (having names on here)
Well, I think everyone is ready to go but me so I guess I will go and get dressed! I will update later on! Thanks for visiting my site!
XOXO
Chass
Tuesday, September 6, 2005 9:48 PM CDT
BEACH VACATION-DAY 1!!
Because of getting out of the hospital a little later than planned yesterday so we decided to stay at home and leave early this morning. Well, we didnt exactly leave early but we did leave and we got here at about 4pm. It took about 6 hours! I slept most of the time. The beach house is WONDERFULL!! It was donated to us by parents of a little girl who also has cancer-how nice!! The house has EVERYTHING! All the dishes you could possibly need and more. 4 bedrooms that sleeps 10 people. TVs with DVDs and free movie rentals, a hot tub, and private inground heated pool. I like the hammock right outside of my room on the deck. We went grocery shopping and to a souveneir store to look around. Then we walked down to the beach which was really windy. It was hard for my to get there with the stairs and going up a sand dune. It was really windy and the waves were strong and high so we didnt stay long. We will venture down again tomorrow, after I swim in the pool. (since I have no line!!) Well I am off to watch TV!
XOXO
Chass
Monday, September 5, 2005 2:20 AM CDT
Hello All!
I am back in the hospital....dont worry, its not a bad thing! I am just in over night to get tanked up with blood and platelets before heading out tomorrow for the beach. On Friday afternoon, my line was successfully removed. I was pretty sore afterwards so they put me on pain meds starting in the recovery room. I dont remember all that much because between the morphine and the benadryl (premed for pentamidine) I was pretty out of it and sleeping. Because I would wake up every so often and ask for more and the whole being pretty drugged, I decided to stay the night. Dr G had told me it was up to me. It was late by the time everything was over so it worked out for the best. Today (Sunday) we went to the anual Growing Hope, Kings Dominion trip which was a blast. I had lots of fun and got a little red from the sun. I am about to get my second unit of blood right now and then 2 units of platelets. That will put us in the late morning to be discharged. We will then go home, pack and my mom, grandma, and me will head to the Outer Banks for a week. No that I have no line, I will be able to swim longer and actually go in the ocean! YAY! Lori and Greg (freinds from the office-also, Ryans parents) are thinking of joining us later in the week, since they are getting a beach house the following week. They invited us to stay an extra week with them but my mom has to make up some work so I dont think we will be able to-bummer! If not, I will start chemo on Monday-big time bummer but if we do stay, I get to have an extra week off-yeah! I will try to update during the week! Sign the guestbook!
Continue praying for my freind Michelle!
XOXO
Chass
Friday, September 2, 2005 3:14 AM CDT
Hello All!
On Wed I had a very early morning doc appt to get blood and platelets. I really needed them both. HGB-8.8;PLT-16! Since I needed to be out of there by 2:30 to go to Ryans funeral, I only got a unit of each. I was pretty weak and was in pain from my neulasta shot. (GCSF) I ended up needing morphine and then had some kind of weird reaction where my stomach was in a lot of pain so they gave me IV ativan to relax me in case it was a muscle spasm. I guess it helped because I slept the next few hours.
Ryan's funeral was very nice. His mom Lori gave the eulogy which was incredible. She mentioned me many times which made me feel so special. Then we were escoted by motorcyle policemen to the cemetary where one of the female officers sang "you are my hero!" Then roses were handed out to the immediate family members to place on his casket. The last one was handed to me in Greg and Lori's request. I felt so honored at that moment. It was a hard experience but one I will never forget. Greg and Lori were the most amazing parents Id ever met (along with mine lol) The reception was nice also with food and pictures of Ry and a nice long slide show of pics of him and family thru out his short but fullfilled life. He was an amazing little boy and I am truly honored to have known him. Because of how close I was with him, I got to be one of the few family members to release the 260(?) baloons that represented every week of his life. Glow sticks were attatched and it was something so specail to watch them floating toward the sky! Mom and I stayed pretty late with Greg and Lori and their family before realizing I was late for my antibiotics. So, we rushed home and got me hooked up. It was almost 3 before I just passed out from exauhstion and forgot to disconnect. It was ok and mom flushed me in the morning.
After finding out that I was pretty dehydrated, I got fluids, my pain meds, ativan, slept for a while and was sent to the hospital. They wanted to admit me anyways for my central line removal tomorrow evening. They went ahead and did my CT while I was here, which we havent yet gotten the results. I will keep you updated as they come in. I have a fentinal patch now that Im here and just got a dose of morphine for a headache. The neurologist came to see me this evening and diagnosed me with miagrains. We are not sure yet as what meds they will use to try to help them but for now morphine is helping. My line will be pulled at about 2:30 as long as everything goes as planned. That means not food after 6am. Of course I dont plan on getting u that early to eat so Im NPO whenever I go to bed. I think I will be discharged after the surgery, but not sure yet. They have so far given me 2 units of blood, my vancomycin, and we are working on the first of 2 units of platlets.
On to brighter news, Sunday I go to the yearly King Dominion trip donated to the kids at our office from Growing Hope. That will be lots of fun. Hopefully my bone pain from the GCSF will be gone by then and I will feel fine. I will try to update sometime this weekend!
Please pray for Jamie's parents (Beebo) who earned his angel wings Thursday morning. Maybe him and Ryan are playing together! And keep my freind Michelle in your prayers while she is not doing so hot. **Keep in mind that I had just recieved IV benadryl somewhere in the beginning of typing this, so bare with me if there are any misspellings or things that just didnt make sense!** I am off to try to get some slepp before the 7am nurse change!!
XOXO
Chass
Tuesday, August 30, 2005 11:01 PM CDT
Hello Everyone!
Today was an OK day. I felt pretty lousy with this cold. It seems to be getting worse but I guess that has to do with my counts dropping. Since my ANC is probably about zero now, Im guessing I will be stuck with the cold for a while since I wont have the ability to fight it off. I have a doctors appt tomorrow and I will need platelets and more than likely blood. Im a little pale and Ive been pretty tired lately. But I will be leaving the office early to head to Ryan's funeral. Im not looking forward to that but since it has to be done, Im glad to be able to see Lori and Greg (his parents) Over the last year, I have become very close with the 3 of them. Im still having a hard time being at the office without them but the benadryl is helping me sleep thru the days..lol!
My doctor called today to say my line is still infected so we are planning to have a "mini surgery" to have it pulled on Thursday. Theres good in that and bad. The bad is that you can only have so many lines before the surgeon start having dificulty putting them in. We dont have any definate plans on how long treatment will be and some kids with NB have been going for years and years! Im going on 2 years and 3 lines now! But the good news is that while Im at the beach next week, I wont have to worry about IV antibiotics or infection and I can swim for as long as I want and even in the ocean water!! Always looking on the bright side! My doc mentioned a PICC line for now but I refused one. I want NO lines in my arm!! Plus if my line has to be pulled then Im making the best of it for at least the week of the beach. We are going to Outer Banks in NC. Lets hope for no hurricanes or bad weather...maybe Ill even come back with a tan!! That would be nice considering Im as white as Casper!
My teacher came today and as of now, everything is arranged and my new schedule says "Grade 12" Im so happy! That means I will be graduating a whole year early. My teacher brought over some booklets on getting ready for college!! I was like...Whaaatt!! Im so not ready for those thoughts yet. Im only 16!! Anyways, it looks like things will be working out well with school and she isnt giving me any homework until I get back from the beach, at least.
On some brighter notes-I will be going to King Dominion this Sunday with the office. We go every year and its lots of fun. My Grandma will be joining us as she will be down here with us to head to the beach. It will be nice for me to have a nice weekend followed by a nice long week away from the office and all that bad news. Of course I will still miss Ryan but I need a little vacation! My freind Michelle seemed to be a little better on Monday but not her best. Please continue to pray for her as she is being kept comfortable with all this pain! Also pray for her family because I know its not easy for them to see her like this. Her belly is swollen which is making her breathing labored...BUT she is comfortable, so that Im thankful for!
Thanks for checking on me, and sign the guestbook so I know you stopped by! Thanks!
Still missing my Ry!
XOXO
Chass
Monday, August 29, 2005 7:29 PM CDT
Hello!
I had a doctors appt today. Since I have a cold and positive blood cultures, I had to keep in a room. My platelets were only 11 so I needed a transfusion. My HGB is dropping and at 10.3 so they type and crossed me for possible transfusion on Wed. I did explain that whatever I had to get on Wed, I had to be out of there by 2:30 so that I could go to my freind Ryan's funeral services! Of course, the doctor I had loved him to peices, agreed. Im still missing him terribly but hanging in there. I am having a hard time sleeping at night so I end up sleeping some during the day. I was up until 6am this morning before falling asleep and then being woke up at 8 to head to the office. I slept a while at the office because of the benadryl. I just started more antibiotics (vancomycin)!! There is a possibility of removing the line because of all these back to back infections WHILE on antibiotics. We'll see though. I am super tired so I think Im going to go and try to get some sleep tonight.
Please continue to pray for Ry's family as Im sure they are having a tough time. We all miss him sooo much but know he is in a better place!
I Love And Miss You Ryan!!!
XOXO
Chass
Sunday, August 28, 2005 8:28 PM CDT
Just a quick update to let everyone know that Dr G called today to say that the cultures showed up positive. There is some kind of bacteria in the line(s). Antibiotics will be started up AGAIN tomorrow at the office instead of inpatient. We are glad for that. Its a busy week for us all but we'll try to have an update after the appt. tomorrow.
Friday, August 26, 2005 3:19 PM CDT
LITTLE UPDATED STORY----I was just talking with my freind Alyssa about greiving over loved ones. She (not so long ago) lost her best freind, Katie to cancer, and was trying to cheer me up when she quoted something beautiful Katie said to her, "remember to keep ur chin up cause up is where the angels are!!!" I LOVE it!! I just thought Id share that with you all! Please keep Alyssa in your prayers as she has to have back surgery (after complaining of back pain for a year) and the docs just now are doing something!! What a brave strong girl!!
Late last night a little boy named David passed away. I had been following his page for quite some time and was especially excited when I heard he was getting treatment in NY in hopes that I would one day meet the adorable little boy who fought hard against the same monster I am!
I had a doc appt to get platelets today. I saw my freind Michelle and she seemed a little more alert today which made me happy. Please continue to pray for her and her family!
Please also continue praying for a family who lost their baby Wed. We miss him terribly. The days are hard knowing hes not here and I soo badly want it to all be a nightmare. Today I was pretty occupied at the office with little kids galore (which made it hard) but Im just taking it day by day!
Missing My Favorite Little Guy!
XOXO
Chass
Thursday, August 25, 2005 0:15 AM CDT
Today has been one of the worst days of my life. A very very close freind died this morning. Im devastated! I wasnt prepared at all for this. Please pray for this child's family. My other freind Michelle is still hanging in there. I talked to her and her mom today and it sounds like today was a better day for her. Please also pray for her and her family as its hard to see someone (family or not) in that state. Also, my other freind Zach is still not doing his best. His mom gets married on Saturday...please keep this family in your prayers during this rough, stressful time. Zach will be walking his mom down the aisle. How sweet. Im sure some people are wondering how Im doing with all this crappy news thats been dropped on me. Well I wont lie, Im having a very difficult time with it and understanding it. Lots of people are helping me thru it though. From my mom to nurses (Kel, Kimber, Caroline, Mary....I could go on forever!!) to councelors from camp (Frances and Amy and Joy!) But also Kevin....who was also close with all these kids who recently became angels. Its just sooo amazing how the same people who are being hit with all this as hard (or harder) then me are the ones who are helping me thru it the best! You guys are the greatest...I dont know what Id do without you all. Tomorrow is my only day off from the office this week. Im a little nervous to being "unbusy" all day because as long as Im busy and have things to do then I dont get as upset and depressed. I just dont understand why kids get cancer and then die??!! Its not fair! Dont get my wrong, Im glad these kids are in Heaven and not suffering from cancer (because they have one the ultimate prize) and they are not in pain and they are doing what they want to do that once were restrictions. Its just hard on the loved ones who are left here on earth to greive. Days like this make it hard to understand why I keep going, wondering what the point is....but I keep doing it because if not I wouldnt have been alive to have the privilage to meet these wonderful kids! I feel soooo lucky to have been freinds with them. I dont know how much more bad news I can handle... None of it seems real, I mean I know it is but it doesnt seem like they are really gone yet. But a big part of the cancer life is- take things one day at a time. Thats exactly what I am going to do. Sorry that my updates arent as possitive and full of my usualy bouncy self but things are a little tough right now. Please keep all those kids and their families in your thoughts and prayers. Also a little boy named David who isnt doing well at all. He is in PICU and on the highest level and form of breathing machine. I could go on forever with kids who need prayers right now but there isnt enough time in the day...just pray for God to bless all those who need it!
Thanks for checking on me and signing my guestbook...its a great support system!!
XOXO
Chass
Monday, August 22, 2005 6:58 PM CDT
Hi All,
Today was a chemo day. I also got blood, platelets, and my usual vancomycin. Hopefully we can stop that Wed. It was a pretty emotional, rough day. I spent the better part of my awake time in with Michelle. She seemed pretty out of it but at least shes not in pain. At times she was confused which was hard to see but I stayed with her and chatted with her mom. She asked me to tell her everything about camp that she missed. I tried to tell her as much as I could remember but it was hard with sooo much on my mind. Please pray for her and her family. I dont know how much times she has left but I hope she stays comfortable.
I will try to tell you about camp but like I said its a little hard to remember everything with my mind so foggy.
Sunday I got their a little late and was just finishing up my vancomycin drip. They took me to where everyone else was and then for the first time, later that night, I got to see where Id be sleeping and meet my roomates. Sarah who I had met at freinds weekend was in my room and Christy sho was really nice. My councelor Joy was cool too. Then next door to us the room ajoined with 2 other girls and Amy, another cool councelor. Her and I were the Gossip Queens of camp. Monday was Superhero day, where everyone dressed up as their favorite superhero. I didnt dress up but it was still fun. Wednesday was Farm Day. We all went to a farm in Culpeper and there was tons of activities to do. Then after that, the teens went to a teen bowling trip which was fun. It was nice to just have teens around instead of the little kids for a change. Everyday I asked if Michelle was coming and finally Thursday, they said yes. The first thing she did was swim. Then at night, we had the talent show. It was really good, some of these girls could really sing! Everyday, twice a day I was in the infimary getting antibiotics and one day I got platelets. Unfortunatly, I was awoken on Friday morning being told to get dressed because Michelle was leaving and I was allowed to go say bye. Her roomates also came down and they all sung camp songs so I think she really enjoyed it. It was really hard for me to see her go in an ambulance (which was the safest way to get her home) but over all she had a great time even if it was just for 12 hours or so. After all it was her make a wish. Then that night we had the banquet dinner and our last campfire. It was awesome. They set off fireworks at the end which were really good! Then we had a dance which was also fun. I stayed up with my roomates all night and we had a blast. Then Saturday morning we had a special pancake breakfast before loading the buses and leaving. It was a really fun filled week. I even got on a horse, which scared my pretty bad. I think if there werent other horses walking near mine, it would have been ok. My horse didnt like the other ones so it was kinda figity.
Anyways, please also pray for my freind Ryan who is in PICU.
Also, my freinds Mark and Diane's family during this hard time without their special someones!
XOXO
Chass
Sunday, August 21, 2005 1:01 AM CDT
Ok I am back from camp!!
It was the best week Ive had in a very very long time. The best part was when my freind Michelle was able to come for about 12 hours for her Make-A-Wish! She ended up having to leave by ambulance because she was too unstable to stay. She is now home and on pain meds to keep her comfortable. I am going to try to visit her as much as possible this week. I will update a little more on camp later on! It was sooo much fun though! When I got home I found out that 2 freinds had passed away while I was gone so Im a little upset about that right now!
XOXO
Chass
Monday, August 15, 2005 8:48 PM CDT
Hello all,
This is Carrie, Chass's mom. I just wanted to let everyone know that shes out of the hospital and made it to camp on sunday. She was a little late but she made it. Everyone was waiting for her to get there, even people that didn't know her. I know she'll have a great time. She'll be back Saturday morning so she will probably update to tell about her camp experience then. Thanks for checking in on her. She'll probably have INTERNET withdrawals. Don't forget to sign her guest book.
Carrie
Thursday, August 11, 2005 4:34 PM CDT
I just wanted to update everyone really quick- I am in the hospital with fever. It was 101.1 when we called the doc and is now down to 100.7! I am having a bad headache (what they might think is a migrain) so I am waiting for my nurse to bring me some Tylenol 3. I am very disappointed because I was supposed to leave for camp on Sunday. Dr P said she will try to make sure I get discharged Sunday so I can head straight to the camp. My freind Michelle who I am looking forward to going with is also in here. She is supposed to be discharged Saturday so keep your fingers crossed and hopefully we will both get out and be able to go and have a nice time EVEN if we have to get products and antibiotics daily at the camp! I will try to update later tonight to let you know if anything has changed...check back later!
XOXO
Chass
Wednesday, August 10, 2005 10:19 PM CDT
Hello!
Ok ready for an update!? Yesterday was a really really good day! I went SHOPPING! Mom bought me tons of clothes. I mostly got bottoms (pants, skirts, and shorts) I got 7 bottoms!! Better then school clothes shopping. I only got 2 shirts though. I had recently bought some so Im all good. It was lots of fun for me. I also got some stuff for camp like a twin size sheet since we dont have any and I needed one for camp, a beach towel, and some other little things to take. I loved it. Its so much more fun to shop with someone elses money huh? It was a lot of walking for me though. My back and ankles hurt really bad by the time I got home. Then today I had a doctors apointment and had to get IVIGG. It was a pretty short day. I took the benadryl PO so I didnt get too sleepy but I did take a quick nap. I felt pretty rotten, maybe from the IVIGG. I had a headache and was neauseas and just didnt feel great. Then my sister came over to the house with Ricky. (my 9 month old nephew) He is getting soooo big-23 pounds! I should have pretty big muscles by the end of tomorrow. Well its been a really long day so I am going to go to bed now. I have another appt on Friday to get platelets and they type and crossed me incase I need blood. They want to tank me up for the weekend and camp. The only other medical news is that my toe is looking not-so-good anymore. Its hurting some and getting red again. I am still on Levaquin (antibiotic) and Diflucan (I take while on antibiotics) to prevent any infections. So far so good! I will update before I leave on Sunday but then I wont update util the following weekend so dont be worried!
XOXO
Chass
Monday, August 8, 2005 9:33 PM CDT
Hello All!!
Well today was a super long day! I got to the office at 9:30am and didnt leave until almost 8pm!! Whewww! I had to get 2 units of platelets, pentamidine (anti-pnemonia med) and then we only had time to get in 1 unit of red blood cells. My hgb was 10.2 so that should have been enough to hold me over. I will go back on Wednesday to get IVIGG and possibly another red blood cells. Then I will go back on Friday to get "tanked up" before heading off to camp on Sunday! I will be gone until the next Saturday and then we have tickets to go to Six Flags after that, but it depends on my moms work schedule. I was having left shoulder blade pain today (sice Sat night) and none of my pain meds were helping and they were making me feel soooo druged so I got some morphine for that. Then after getting almost finished with unit 2 of platelets, my eye started itching and feeling swollen and sure enough, there was a hive. It was kind of hard to see and I had more on my head and neck. I had to get EXTRA benadryl...more then usual. Then I had to have ativan as a premed for pentamidine. Then for some odd reason, my head started hurting really really bad and I had just had a small dose of morphine 30 minutes earlier so they gave me a little more and off to sleep I went. I felt soooo drugged then, it was a horrible feeling. I am still a bit tired so I am off to try to get some more sleep!! Ill update later!!
XOXO
Chass
Friday, August 5, 2005 10:40 AM CDT
Hi Everybuddy!
I made a mistake in my last update, my appt was Thursday and not Friday! Oooppss! Anyways, yesterday I recieved 2 units of blood and 2 units of platelets!! Yes indead it was a LONG day! I got a few hives so ended up getting 2 doses of benadryl! Yuck! Then at 7:15pm I got a temp of 100.1! And that was after being on Tylenol all day. I was sent home and the temp went down so we came to a conclusion-it was from the blood. Well I dont have much more to update on...my week has been kinda boring I guess. I will update after my appt on Monday!
XOXO
Chass
Tuesday, August 2, 2005 2:00 PM CDT
Hello...sorry for such a delay in updates!!
Ok so does everybuddy want to hear about Sunday?? Thought so... Lori, Greg, and Ryan picked me up at the hospital at about 1pm on Sunday. Destiny's Child was delayed but who cared, we got to sleep in longer. So, they picked me up and off to DC we went. We were using MapQuest and got lost....who would have ever thought of getting lost in DC?? Hmmm...but we got there right on time BUT Destiny's Child definatly didnt. They were about 2 hour late. That was a lot of time for a now 5 year old boy to sit and wait. Plus it was kinda cold in the room we were in. There were about 20 kids plus lots of parents and many many photographers. Us Celebrities....oh wait I think maybe they were there for the group, lol! But we painted these ceramic things. I did a butterfly and Ry did a dinosaour and a giraff. Many snacks later, their bus arrived. EVERYONE gathered at the window, what a surprise? We waited and waited, and waited a little longer before finally...they walked in and all these little girls were like..oh my god!! its them!! LOOK!! It was really funny though. Then they walk in the building and what do they do? Yup go into a private room for about another 10 minutes. But when they came in with us, it was all about us. They were SUPER nice and SUPER pretty. Beyonce (Ry's girlfreind) came right over to us and he was all shy and cute. He pulled up his shirt and showed her his tubies-how cute!! Her and Michelle was like "Whats that?" and looked at Lori!! HAHA it was sooo funny but the cuttest thing ever. They sat and painted and talked with us. They asked us more questions then we asked them. Lori did have me ask them to sing Happy Birthday to Ryan and of couse they did. What a gift?! Ryan showed them one of his Yu-gi-oh toys...I think thats what it was. We got hugs from them all. AND these 2 little 10 year olds were telling Beyonce how pretty her bracelets were. She had about 30 little thin gold ones and a few thicker ones on. She took 2 of them off and gave one to each of the girls. I thought the one was going to faint, she was gasping for air. So then a lady came in and said ok the girls are going to have to go now, they have a concert tonight. Bummer! But as they were walking out, Beyonce blew Ryan a kiss!! Priceless! Id say we had a fabulous visit with them. They were like real people, not all fake and over made up. It was a very nice day. We didnt get lost on the way home luckily. We stopped at McDonalds for lunch and then headed to the Holt's house. We hung out there for a while. Ryan had to rest his feet which were swollen from dangeling all day (Greg carried him) After the guys got back from WalMart where Ry spent his birthday money, Lori took me home. It was 10pm by the time we got here and I was beat. I saw us (well you couldnt see Ry or me-people were blocking us) on the news. It was pretty cool. I hear Destiny's Child visited to Ronald in New York also...how nice. I wish the 3 of them the best of luck in their solo careers because they were so sweet to us! Well, then Monday was a day off. I started reading the Harry Potter books...Im only on the first one but almost done. Pretty good books-kinda addicting. Anywas, I had an office appt today and needed nothing. I am very neurtapenic now. My ANC is 0, hbg-11.5?, and plt-29!! Pretty good. Oh yeah, WBC-0.3!! I got my neulasta shot today to help boost my WBC. Hopefully it will kick in. Im pretty sure (almost possitive) I will need platelets Thursday when I go back and they type and crossed me for blood too just in case. It should be dropping within the next day or two. We also went over my schedule for the next month of so. August 14th I head to camp for a week!! Then I will do 3-5 days of chemo after getting back and then Sept 4th we got to Kings Dominion with the office (I want to be well for that) and then after that we head to NC to go to the beach for a week!! So, I want to be well for all those things and it should work out that I am. Hopefully. Knock on wood! Im glad that my scans are NED (No EVIDENCE of Disease) but we will continue doing chemo on this schedule (maybe once a month instead) until the Hot Antibodies open in NY. Thats the 3F8 (monoclonal antibodies) tagged with radiation. Everyone feels thats whats best for me so we are hoping they will open in about 6 months and then I can start those and as long as Im still NED, stop treatment. Maybe still do Accutane but it makes me so sick that we are leaning away from that. I dont want to get ahead of myself but it such good news that I thought Id share. Lets hope for the best and prepare for the worst..right? Ok, hope you enjoyed reading this update and I will update after my appt on Friday!
Id like to give a prayer request but you know what? Too many kids need praying for so just pray for God to bless everyone who needs it!
XOXO
Chass
Friday, July 29, 2005 9:08 PM CDT
Hello Everybuddy!
Ok....now on to my big news for the weekend! I actually have lots of big news. Firstly, on Sunday I will be meeting Destiny's Child. They are on their last tour together as a group and they volunteered to meet with kids with illnesses who have stayed at the Ronald MacDonald houses here and in DC and they will to a build-a-bear project with us! How Fun! Well, my little buddy Ryan who LOVES Beyonce (who is a member of the group) is turning 5 on Sunday. He has had a really really rough year with transplant and then it failing to do what they had hoped. Well, I set it up for him to be able to come too, even though he had never been to the Ronald down here. I had to talk the lady into it but she knew me and it seems like people who know me, have a hard time saying no. Nice concept....for me!! Anyways, on to some medical news- my CT scan is clear so I think that means NED as for that scan. Also my PET looks good but we havent gottent the details on it yet. We will find out where the cancer is still present tomorrow when I get admitted. I am assuming that "good" means it is better or at least staying stable!!! But either way, its great!! For all those other NB families out their, we all know to not get too excited right away. And for those who dont know, neuroblastoma is known for more likely then not to come back, even years later. Not to sound negative, (which Im not being) I have just seen too many people crushed because they werent prepared for a relapse. We talked some with my doctor and he said that this just might be a way of life, some kids get their cancer stable and just do that chemo thats holding it for years. Thats better then the other option...right? Dont get me wrong I am VERY happy about my scans!! One of my freinds found out today that he is DONE...with everything. ALL better, no more chemo!! YAY!! And what was even better is, they werent expecting that at all. Such good news! Plus another one of my freinds found out today that his scans were all clear also and after his precautionary radiation and last doses of chemo he will also be done. I am so happy for them both. It does get a little frusterating though...all these new people that I see being diagnosed and then I see them getting done also. I cant even name all the people I have met at my oncologists office. There are VERY few people who I know from the beginning. And most of those are the leukemia kids who are in the 2 1/2 year protocol. But in a way some of them are lucky because they get to continue with school and normal life but, this has become my life and its not all bad. There are probably more good things out of having cancer then bad things, for me at least. I wouldnt trade all my new freinds for anything. I would do it again just fot the experience and relationships I have formed! Yeah, the pain and sickness part sucks but, its all worth it. I might not say all this while Im endoring all this crap but at the moments things are OK. I think about other kids and how bad they have it and realize a lot of these kids are way little and go thru the same stuff as me and even worse! Anyways, enough rambling! I have been feeling well today. Yesterday and Wed were bad days, I was pretty neauseas...luckily no vomitting, just dryheaving!! YUCK!
Everyone have a nice weekend!!
XOXO
Chass
Wednesday, July 27, 2005 11:19 PM CDT
Hello-Just a quicky!
I am out of the hospital and at home. I started chemo today at the office. I am exhausted and tired and I have a bad headache which is progressing as I type so I will update tomorrow or Friday with my big news for the weekend!!
PS-Say an extra "I love you!" to the ones you love, they arent always there when you want to tell them. And say a little extra prayer for all those out their who have lost a loved one. ***Frannie-May your family find a way to work thru this incredably painful time without you!***
XOXO
Chass
Sunday, July 24, 2005 10:23 PM CDT
Hello All,
I am still in the hospital. I am also still on a PCA (pain pump) although I am wanting to see how I do without it. The docs want me to keep it at least for the night. My toe is looking pretty nasty but feeling better. Hopefully its not in pain because the infection is getting better and not just because of the morphine. I have been eating a LOT!! I think its from the steroids I got last week from platelets. Oh well. Tonight I am having a little nausea and a headache...possibly from being on so much morphine for so long. I will be in here at least until Tuesday so that I can have my PET scan. I might even have my bone marrow aspirate and biopsy while inpatient too. I think my line/blood cultures are negative again..YAY! I am still on tons of antibiotics for everything though. I just got done soaking my toe in warm soapy water and now it hurts and I am tired so I think I will try to get some sleep! I will update later with more..just wanted to let everyone know really quick on how I was doing!
XOXO
Chass
Friday, July 22, 2005 10:20 PM CDT
Hello Everybuddy!
Well today hasnt been a good day at all. I was so tired by the time is was time for us to leave to go to the office. I slept on the way there and was in so much pain. My toe was really hurting bad and oral pain meds werent working at all. So, they gave me a dose of morphine before drawing more cultures. The morphine wasnt working either. They were giving me 2mg of the morphine every 30 minutes because the pain was so bad. We also got the results of my cultures back. I have an infection in my toe and in my line. Plus I needed platelets. That automatically meant I was being addmitted!! In the whole 2 hours I was at the office, I received 8mg of morphine which for me is quite a bit. Then we came right over to the hospital and I didnt get anything over here for almost 3 hours. I was not a very happy person. They put me on a PCA. (pain pump) I got a quick bolus of 2mg and now I am getting 4mg of morphine every hour plus I can get 1mg every 15 minutes. Needless to say I am extremely itchy. I am on antibiotics and platelets and blood so I am also getting benadryl so that makes me super tired. Large amounts of IV pain medicine makes me emotional and moody. I am trying ever so hard to stay calm. It also makes everything lound which is very annoying. The morphine is helping some but not nearly enough. Hopefully I will get some sleep and wake up in a better mood at least. I had and Ecko and then I had to drink contrast for a CT scan. These are a part of my restaging scans. We are starting on them early since I am in the hospital. Oh well. I actually just got back from getting the CT at 11:30pm. I couldnt eat until it was done so I am starving, tired, moody, and irritated! I am going to go now and eat my Outback steakhouse food and I will update tomorrow with more info!!
Sorry if this update is a little confusing...thats what happens when your drugged up on so many meds!! Yuck!
**Kevin Lee-Thanks for staying late to visit with me and making me laugh!
**Kimber-Thanks so much for coming over after work to visit me!! We had lots of good laughs and great conversations! You guys are the best!!! I love you both!!
XOXO
Chass
Thursday, July 21, 2005 10:44 AM CDT
UPDATE- Sorry but I couldnt resist updating. It is about 6am Friday morning. I have been up for a couple hours with pain in my toe. Pain meds just arent cutting it, in a few short hours when I can bet anyone a million bucks I will be extremely tired, we will head to the doctors and maybe Ill get a dose of morphine. Anyways, my mom is asleep in bed, my dad is off to work and I have my brother slaving for me in the kitchen making eggs! What a life! This may not happen for quite some times so I thought Id update real quick while he is serving me lol!! Now if I just had a foot massage! I hope this puts a smile on everyones face! Thanks for checking on me!
Chass
Hello Hello!
Well let me update on what has happened and what hasnt since Monday!
**Tuesday I was at home and my homebound teacher stopped by to give me SOL test. (Standard of Learning) which for those of you dont know, are very important. I have to take and pass so many in order to graduate. I have to have those back to her by...TODAY!! lol. But her and I sat down and figured out how many more classes I have left. 8! That is 4 for each semester and that means as long as I pass them all and the school allows me to take the science and PE ones, I will graduate next year. A whole year early!! YAY! That would be great to not worry about school so much!
**Wednesday morning (3am) I woke up with horrible pain in my toe. Yup, the one I had surgery to. I figured ahh its a toe, Ill ignore it. Not so much! It hurt soooo bad, I couldnt sleep, I couldnt keep the foot still, and one pain med wasnt working so on to another...one of those kind of early mornings. You know, most of you have been there! So, the pain meds knocked me out, surprisingly. I woke up a few hours later with yet more pain. Mom looked at the toe and suspected a possible infection. We called the doc and she said to bring me in to the office for a visit. There went our plans to go to the beach. I called my freind Jessica and told her. As normal non-stop thinking teen machines, we came up with our own plan. She will come with me to the doctors and then afterwards, mom agreed to taking up shopping. Well shortly after I get to the office, another bad headache comes on with nausea. So, since the doc wants to dig at my toe with a needle, I got 4mg of morphine. Then 1mg of ativan. My counts came back and not only was I very neutropenic (ANC=dots...0!!) I needed platelets which ment benadryl. Also, the doc decided on a dose of Vancomycin which also means benadryl. Needless to say, within an hour I was totally out. Jessica watched a new movie we had just gotten and promised me that she didnt mind any of this. What a relief, after my 15 year old brother whinned when he found out the beach was off! My mom ordered up lunch and I slept while Jess wathched a movie and mom sccheduled my restaging scans. Everything was finally done a little after 5pm! Oh well. I was sent home on oral antibiotics and will return to the office Friday. Cultures were taken from both my line and my toe. I had started getting a fever AFTER tylenol was in the system so thats why I got line cultures drawn. Hopefully I will be clean and wont need to be admitted!
**Thursday-I have to have my SOLs done by this afternoon! Better get working on them...I will update tomorrow if possible!
XOXO
Chass
Monday, July 18, 2005 9:28 PM CDT
Hello,
My weekend was ok. Some would consider it pretty boring but for those in the same boat...no SHIP as me, would think it was a great weekend. No fever, or too bad illnesses. I did start getting a headache Saturday night which continued thru the night and into Sunday and on into Monday. It did give up some Sunday evening. I went to the doctors at 9:30 and didnt walk out until 6:45!!! I had to have blood and platelets. I got platelets first, and tried talking my way out of getting premeds aka benadryl but the docs overruled me!! Well i guess it was good that I got that little dose of benadryl....in 8 months I hadent gotten hives...UNTIL yup, yesterday!!! Only a few but still. I got some Salumedrol and I guess that worked. I had to take quite a bit of tylenol today, even a little with Codine. I ended up taking some Percocet when I got home which makes me stay awake all night, so here I am in the middle of the night updating.
Tomorrow my teacher is coming to give me my end of the year SOL's. I missed them as I was in the hospital at the time the rest of the students took them so I have to deal with taking them during the Summer! Then (weather pending) we plan to go to a man-made beach on Wednesday. I dont much like salt water so this is a good place for me. Maybe I will get a tan...a much needed tan for my pale skin!! LOL- dont worry I will have sun screen on. My mom, brother, my freind Jessica and I will all be going. It will be lots of fun. I dont return to the office until Thursday and they will probably tank me up with everything for the weekend. I will update later in the week!
XOXO
Chass
Friday, July 15, 2005 7:30 PM CDT
Hey Everybuddy!
Today was my last day of this round of chemo. All went well and I needed no transfusions luckily. I was in and out. They took the bandage off of my toe and it looked so gross. There was like a hole where my nail used to be...yuck! I cant wait for it to heal up. Mom went to work this afternoon and I stayed at home and cleaned..fun fun. It was nice to just relax and be home alone though. Anyways, a little bit ago the phone was ringing so I went to get it. I didnt make it in time but it was my doctors office!! The first thing I thought of was that my cultures came back positive. I called her right back and luckily I was wrong. She just wanted to make sure I had some sort of a white cell booster aka GCSF shots. And of course I did. How could we forget that!? So tomorrow I will get my Neulasta shot which I dread. Even though its only 1 shot I hate it because it is a bit more painful then any of the others. After having that numbing shot yesterday, I shouldnt mind it much! I am doing very very well. My counts are fabulous which kind of makes me a little nervous...they have usually dropped some by now. (I hope the chemo is working) But, I did get an extra week off so maybe it will just take a little longer. I had a pretty good day and when Dr Weil called she did say my cultures looked fine and since my temp is staying 99ish and below everything should be ok!! YAY!
**Please continue to pray for Zach!**
www.caringbridge.org/il/zachallen
XOXOXO
Chass
Thursday, July 14, 2005 3:59 PM CDT
Hey Everybuddy,
Sorry for not updating sooner, we havent had internet. Our phone lines have been down (caused by a storm that was SEEN in a distance) but are finally up and working as of today. Tomorrow is my last day of chemo for this round. I have been doing OK with it. Yesterday I did get pretty nauseated though. Some Ativan IV quickly helped, until it wore off about 30 minutes later. I then got benadryl as a premed for platelets and more Ativan IV and off to sleep I went. Then in the evening I started getting a low grade fever..it only went to 100.1*. Then today when I checked in at the office it was 99.something so of course my doctor drew blood cultures. A lot of that was going around. Today was not the best day for me. It was a very short day at the office, only getting Topotecan which takes 45 minutes plus the 2 hours before that to be seen. But all in all that was very short. The best part of the whole day was visiting with my buddy Ryan. He explained to power ranger and pokemon things to me. He sat in our new office recliners in the play room with me too. This was all while he was sore and feeling yucky. I was so happy he spent time with me...he is such a special little guys. But after my oncology appt I had to go to a Podiatrist...yuck! Thats a foot doctor. I have been dealing with an ingrown toenail...I know gross! It put me in the hospital this last time. Well the guy was going to take it out, and he did. I had to have 2 numbing shots which hurt pretty bad. Then, I could hear him clipping at things, it was horrible. I can not stand things like that, it gets me really nervous and upset. I cried and screamed the whole time...lol...Im a big baby about these things. I dont like to be aware during procedures and I was FULLY awake and aware of EVERYTHING!!! It was not fun. I am better now and the toe isnt hurting anymore, but it is still numb so...we will see tomorrow. I will try to update then!
**Please pray for my freind Zack! www.caringbridge.org/il/zachallen He just needs everyones prayers. His 13th birthday is August 1st but they celebrated his birthday already since he isnt doing so great!**
Thanks!
*XOXOXO*
~Chass~
Monday, July 11, 2005 11:09 PM CDT
Hello Everybuddy!
Today was day 1 or 5 days of chemo. My mom had orientation for her new job this morning so one of her work freinds picked me up and took my to the doctors. Thanks Kelly! We played cards and chatted until I got Benadryl and fell asleep. I slept for quite a while and when I woke up to give a pee sample so I could start chemo, I was very nauseated and my face was tingly/numb from getting Pentamidine. So, they gave me more benadryl and a dose of Ativan IV. (I was given IV Kytril which must not have worked) Then I was asleep for a few hours until my mom got there. I was still nauseaus and ended up getting 2 more doses of IV Ativan before leaving for home. Do I even need to say that I was tired? I left at around 4, slept all the way home, and slept until about 9pm. Still being nauseaus, I ate chicken noodle soup and just took a phenergan pill and once again..Im tired!! lol! Besides be sick to the stomach all day, it was a fine day. A short day from sleeping the whole time but good I guess! I will update later in the week!
*Please continue to pray for my freind Zach who is now home on hospice and in pain!*
XOXO
Chass
Sunday, July 10, 2005 12:23 AM CDT
I am home!
Camp was a lot of fun. I met lots of kids my age who are going or went thru the same thing and Jessica had fun too. Holly (childlife) was my councelor, which was cool since she is from my hospital. We did lots of activites, crafts, games, eating, talking, hanging out, eating, swimming, talking, sleeping,having fun,and did I mention EATING! I thought I would explode from all the food they fed us. I made lots of beaded bracelets. Most of the kids were out of treatment and then of course their freinds were healthy so I sat out on a few things. I got really exhausted a few times but luckily Jessica isnt shy so she just teamed up with someone else if I was to tired to participate. I actually surprised myself at everything I was able to do...lots of walking. All in all it was great fun and I met lots of people I am looking forward to seeing in August when I go back for a week. It was like a big party this weekend, it was only teens and half the counselors were not much older and the ones who were, acted like us...lol! Well, I am tired from the day and hingry so I will update tomorrow I guess. I start chemo tomorrow until Friday!
Thanks for checking on me!
*Please pray for my freind Zach who is in lots of pain and is in the hospital from that!*
XOXO
Chass
Thursday, July 7, 2005 8:41 PM CDT
Hey! Just a quick update-
I had a nice last 2 days. My mom has been working those days. She finally got everything with work together and started training! YAY! I spent Wed with my dad doing shopping and stuff then today it was just me and my brother, Cody home while they were both at work. I cleaned all day, mostly running after Cody and the dog cleaning up!! grrr... lol. Tomorrow I go to the office for platelets and maybe even blood too! Then I am off to camp with my freind Jessica for the weekend. We should have lots of fun. Im looking forward to it! I will update when I get back.
Thanks for checking on me!
XxOoXxOo
*Chass*
Tuesday, July 5, 2005 4:07 PM CDT
Hello All,
Just a short update to let everyone know how Im doing-
I had a nice long 4 day weekend away from the doctors office so that was nice. Today I went in planning to start chemo. I talked the doctors out of it for this week, but I will start it Monday. The reason is because this weekend I am supposed to go away to a Fantastic Freinds Weekend Camp. (kids with cancer and a freind) Its all teens, and no parents or doctors or any of that stuff for a whole weekend...just me and my freind Jessica and other 13-17 years olds. Im really looking forward to it. I have never been away from my mom this long (since Ive been sick), let alone go to camp. But they know the situation and will be prepared so I should be fine. Plus, my mom goes back to work this weekend for the first time in over a year and a half! YAY! Im glad because she really wants it. She actually starts training tomorrow and Thursday-another good reason to delay chemo. Not a big deal since I have never asked to delay it before. So, I only got platelets today. Since I have been reacted to my premed (Zantac) we only did 15 of Benadryl, instead of my normal 50, since i hate it so much. It makes me get jerks really bad. Then, once I was hooked up, I started shivering and was extremely cold. Normally it wouldnt have been a big deal since all vital signs were normal except in the last week, a few other kids there had the same thing and then a couple days later developed a fever. So, I got Salu-medrol to help keep the shivering down. I fell asleep from the benadryl with heating packs in my arms and at my feet0/legs! I woke up feeling ok but soon after got really hot...weird. No fever all day. I got home and checked it like I promised to do and it was 99.2* Nothing bad but we are officially on fever watch until its normal agian. The bad thing is, I have a headache and if I take Tylenol, it will camoflauge the fever if one comes, so Im toughing it out. Plus the Salumedrol already does that so we will see. But thats how my day went...all in all it was ok! I will update later in the week. Remember no news is good news. If fever or admition comes along, I will update to let you know!
Enjoy your week!
XOXO
Chass
Saturday, July 2, 2005 7:35 PM CDT
Hello Everybuddy,
Thursday I got platelets at the office and it was Dr Kitchens last day. Keep her in your thoughts as she is traveling to Detroit this weekend where she will be living closer to her fiance. Im very sad and dissapointed that she is now gone but happy because I know its what she really wants and she is happy to be moving so in the end, everyone is happy. lol! I didnt really do much that day. Took some naps and then was wide awake until almost 4am.
Friday was a bit more eventful. Mom woke me up around 11 and we headed to Red Losbster for lunch/dinner. Its my favorite place to eat out even though Ive only been there 2-3 times. I ate a lot of crab legs. Well I really didnt eat that much, Im just a slow eater and I pick so it seems like I ate a lot when really I just sat and picked at the food for over an hour. lol! Then we went shopping! We went to a shoe store and I saw these one shoes I really wanted but I decided to wait and see what they had at Kohls first and then I could always come back. Good thing I did cause at Kohls I found the same shoes for less then half the price! They were having 4th of the July sales so I bought mom some sandals too. We eat got 2 shirts and I also got some shorts. Then we went to good ole WalMart and got house hold stuff and a ton of stuff for our new puppy, Diesel. We are still trying to house break him, he is getting better though. We also got some paint to paint my bathroom, AGAIN! Cody started painting with flat paint and so we got pretty light blue semi gloss paint, but this time mom is painting. Then we went to get Ricky so we could keep him over night. He is such a cutie. By the time we got home, my freind Jessica was over there waiting for us. We played with Ricky and the dog for a few hours and then ran to the grocery store to get some pizza for dinner. It took FOREVER to get Ricky to go to sleep and now he is tossing and turning a lot plus the dog keep whining and so you literally have to sit next to his crate until he falls asleep-spoiled! All in all it was a really good day. By the way, my dad and brother went out of town so its just me and mom for the weekend, and Ricky, and Jess, and Diesel, and Kitty, LOL! I will update later on!!
**I typed all that last night, but her is an update for today-Saturday!**
Mom woke me up at like 5am (mind you-I didnt go to sleep until 3am) to get Ricky a bottle because he was fussing. She had already been up many times with the dog, who needs let out at least 2-3 times thru the night or else he pees and poops and whimpers until you do!! Then i slept until like 9 and got back up with Ricky. Boy was I ever tired. Jess and I kept the dog and baby occupied for a few hours and then took them for a walk. I got tired really quick so we came back. We stayed outside for a while before bringing them in and feeding them. Ricky went down for a nap and soon after I did too. During all this, mom was painting the bathroom. She redone the whole thing and it looked really good so far. She had to stop and watch the dog and baby while I slept until almost 5!! I cant believe they didnt wake me up! I was really tired and sleepy.....
Ricky and Jess are now home and its just me and mom. She is finishing the trim in the bathroom as we speak and I am about to rest some more. With me being so tired, and I have been chilly all day, we are on fever watch but so far so good-98.8!! A tad bit high for me but still normal! I will update later. I have chemo Tuesday-Friday this week! I hope everybody has a great 4th of the July weekend!!
XOXO
Chass
PS- Sorry for the lloonngg update!
Thursday, June 30, 2005 10:28 PM CDT
**"Today..is the tomorrow
You worried about..yesterday"**
Tuesday, June 28, 2005 1:31 PM CDT
Hello Everyone!
Ok, I am out of the hospital finally. Im on one oral antibiotic now and feeling great. We came home yesterday to some kind of skreeching coming from the living room. To MY suprise (everyone else knew) my brother had gotten a puppy the day before. Its about 7 weeks old and is somekind of mutt of something. It looks like it will be kinda big. I will try to get pictures later. It is the loudest little dog ever. All it does it jump all over you and howl/skreech! Thats what he is doing right now. We named him Diesel. Anyways, I am feeling a lot better with hardly any belly pain anymore. I slept most of the day and plan on laying around the rest. I dont have to go to the office until Thursday which is Dr Kitchen's last day before she moves to Detroit!! We are gonig to miss her sooooo much, she will be a great doctor to those kids out there though! I will update later this week I guess!
Danielle (a freind who I mentioned before) is out of PICU and doing better. Her and Michelle should be getting dishcharged soon!! Please pray for them!
Thanks for checking on me, sign the guestbook please!!
XOXO
Chass
Friday, June 24, 2005 8:53 PM CDT
Hello Everybuddy!!
Today has been an OK day. I am still in the hospital and probably will be for the weekend. One of my cultures came back positive after 2 days so that means its a little weak and hopefully its getting knocked out by all the antibiotics Im getting. I get 3 different ones, each 3 times a day. Plus I have gotten 4 units of blood and 2 of platelets since Ive been here and my hemaglobin is only 11.2 and my platelets-37 post all transfusions. (and this was at 5am!) My toe is the least of my worries right now. It doesnt even hurt anymore but that could be because I am getting 4mg of morphine every 2 hours plus a fentinal patch on each arm for my abdonmenal pain. (so I guess its helping the toe also.) It also doesnt look as red and there is no more puss. I have to soak it in a betadine/sterile water solution for 15 minutes 2-3 times a day. I think that is just to clean it really good and keep anymore infection out. Then I have to have bactroban on it with some cotton. Now, about that pain in my stomach. We still dont know exactly what its from but the CT scan showed some inflamation from my last surgery so it could possibly be that. It hurts pretty bad even with all the pain meds Im getting which make me itchy so then I have to have benadryl and that makes me sleepy. My fever is gone and I feel ok besides the belly pain. I think its under control now where as before nothing even helped the pain and at least now it helps some. Earlier I actually went 5 hours without anything and was able to sleep too. Normally I wake up before the 2 hours is up in pain and wanting more so its good that I can wait now. Anyways, enough rambling for tonight. I will update when I know more!!
Please remember my freinds Michelle and Danielle in your prayers because they are in the hospital with me!!
Thanks for checking on me!
XOXO
Chass
Wednesday, June 22, 2005 11:05 PM CDT
Sorry if this update is a little crammed and skattered! I just want to update really quick before I am unable to. The good part of the last few days is Ive been feeling really good! My sister came over yesterday with my nephew Ricky and I babysat him (for free-what I nice sis I am!) overnight and then the next day I did a ton of clothes for her. (I did get paid for that though lol!) I had a lot of fun and also my freind Jessica came over for the day. We played with Ricky mostly and then when they left, we painted my bathroom. It was my brother's project but after over a week of a messy unfinished bathroom, I thought it was time for women to get the job done lol. We almost got it done but I was getting extremely tired. Before we took her home at 6:30 I started getting cold and had a temp of 99.0* Within an hour it was up to 100.4* so we called the oncall doctor. After she found out that I had an ingrown toenail (my first ever) and it was infected and that I needed blood and platlets and was actively bleeding she said to come right in to the hospital. Like we thought, my platelets were only 7 and I was having lots of problems with bleeding so I am actually right this minute getting premedded for platelets. Then I will get blood as my hemaglobin is a whole 7.4! Let me remind you because of my heart problems, I always get transfused at anything 10 or below so that would explain my shortness of breath and tiredness. Also, Im in quite a bit of pain. It in my lower abdomen, and they are giving me morphine which doesnt seem to even touch it and we are waiting for pharmacy to ok a phentenal patch which Ive never had. My fever got up to about 101.6* before they gave me Tylenol and its now going down. I am pretty tired from the day so I will try updating when Im an up to it (not too drugged) or if something changes!
Thanks for checking on me!
XOXO
Chass
Monday, June 20, 2005 8:05 PM CDT
Hello Everybuddy!
I had a doctor's appointment today and needed platelets. I got to see lots of my freinds and helped Lori (the other shopping mom!) put the groceries away. Ok ok so mostly I just helped EAT the food lol! My platelets were 17 but not too bad I guess. I dont have to go back until Thursday so thats good! I started getting a headache (from the Accutane) which I started yesterday. It has gotten worse since Ive been home and am now taking stronger pain meds then regular Tylenol. Hopefully it wont be too bad this round. I will update later in the week. Not too much has been giong on so thats why my updates are short and only every few days..sorry! No news is good news!!
Thanks for checking on me!
XOXO
Chass
Friday, June 17, 2005 4:14 PM CDT
Hello!
Ive been doing ok medically, besides the nausea thing! Its getting better though now that the harsher chemo is done. We had a bit of a scare today at the office. I had a hard time breathing and they all rushed in to check my vitals and brought a portable oxygen tank, the doc listened to my lungs and they sounded ok besides me breathing real fast, and my heart rate was up a little. Of course I clamped my IV meds off as soon as I started coughing fits. I ended up not needing the oxygen and they just gave me a breathing treatment and then I was ok. That did make my heart speed up even more but I fell asleep and didnt wake up until it was time to go so it didnt really bother me. Im all good now!!
We leave from the Ronald McDonald house today (after mom gets done cleaning the room!) We have no phone connnection at the house so thats why Im updating now. They are supposed to come fix it Monday. The whole area lost their phones so I dont know what the deal is but Im mad that I cant get online. Im sooo used to getting on and checking my freinds websites to see how they are doing. A lot havent been doing great as Ive mentioned. Ive had a real hard time with all that lately. But hopefully I will have the enternet back by Monday! I will update sometime early next week!
Thanks for checking on me and thanks for all the guestbook entries and emails, trying to cheer me up. They really have helped!
XOXO
Chass
Wednesday, June 15, 2005 9:44 PM CDT
Hello,
Sorry for the delay in updates...I guess Im just not up to writing them lately. I have been getting chemo this week and getting pretty nauseaus, no vomiting, just an upset stomach. Today I received, Kitril, Zofran, AND Phenerghan at the office and none really helped. I just took an Ativan pill an hopefully that will kick in. Today has been my first "good" (less sad) day since I heard of Edgar going to Heaven and then I learned my freind Jay died this afternoon. He was a little older then me but with the same cancer. Its hard to loose a freind who is actually my age(which is old for NB patients)! As of now, Im not too upset because I know in my heart it was what was best and he has been just asking when it was his time because he was so miserable. He really wanted it to just be his time to go and finally it was. It sounded like he was awake and pretty aware of everything until his last breath. Virginia-We are praying for you at this hard time. He is probably swimming as I type. (something he told his mom he would do when he got to Heaven!) He will be missed!
Please pray for Emma Grace, Edgar, and Jay's families thru this hard time.
Also- Anthony, and Michelle who have just realapsed.
And yet one more friend, Mark who is home on hospice as his cancer has progressed!
Thanks for you time and sorry about the update being so short! I will try to update when Im more up to it and maybe Ill have some more positive news!
XOXO
Chass
Friday, June 10, 2005 11:55 PM CDT
This is definatly an update that I dont want to type. A freind of mine, Edgar passed away on Tuesday. I knew him from the clinic. Also a little girl, Emma Grace died that day also after complications from a bone marrow translant. She has been on a vent and in the PICU for a few weeks and now she is in Heaven with no pain and cancer free. Edgar's veiwing was today and we went after I was discharged from the hospital. It was extremely hard to see him lying there in the coffin. He is the first freind Ive personally known who has died of cancer that was my age. Also, Anthony has relapsed, just days after his 100th day post transplant. And a freind, Mark at the clinic has left the hospital today and went home on hospice. June is not a good month so far. I am crushed by all the horrible news but trying my best to live with it. I am still in shock by all these stories and especially the death of Edgar. It just doesnt seem real and the hard part is waiting for it to become reality. I myself am doing fine. Still pretty sore and tender from the surgery and now that Im at home withought IV pain meds, its more painful. Please pray for all these families! Thank you for checking on me!
XOXO
Chass
Wednesday, June 8, 2005 5:49 AM CDT
Hello Everybuddy!!
I have good and bad news. Ill start with the good. My surgery went perfectly fine. I had stayed up late Monday night chatting with mom and the other moms on the "front porch" AKA the hallway outside the hospital rooms. LOL! I enjoyed goofing with Kevin the tech and seeing Kevin the patient and also James! I didnt wake up until after 1pm on Tuesday morning. I hadent been feeling well during the early morning, throwing up which resulted in getting some phenerghan which caused me to get jerky and soon fell back asleep. By the time I woke up on Tuesday, I had already gotten 2 units of platelets to prepare me for my surgery. Not long after, the transporter was here to take me down. My post platelet count had just come up and was only 87 and they preferred it to be above 100. Once I got down to pre-op, they ordered some more. I got Zantac as my normal premed and they even gave me 12.5mg (such a tiny amount, I usually get 50mg) just in case. They do things weird down there! Because of that, the normal 10 minutes it would have taken, took over an hour. After I got the benadryl, and I had come down on phenerghan cause I was getting sick to my stomach, maybe from nerves, I started jerking a lot and that irritated me. I was able to fall asleep though. Then everything was ready and the surgeon came in to talk with up and explain things. The nurse gave me versed to relax me and I fell right to sleep. Darn, I didnt even get to enjoy the best part of the surgery-the anastesia meds! But I woke up in recovery just fine. I was in some pain and before long, mom was standing there with me. They already had me on the PCA which was a very small amount and no continuous rate so they gave me a little extra bollis(sp?) They did that 2 times and I had to wait 30 minutes after the last one in order to come up to my room. I was pretty out of it for all that but I was able to menuvour onto my own bed from the stretcher. They then gave me 2 more bolisses up here and then I was really hungry. I ate some chicken and rice and a milkshake and before going to bed I ended up needing a little ativan- I swithced off of the phenerghan because of the jerks. I slet the whole night until early morning and now Im still awake, waiting for breakfast. They were able to do the procedure laproscopically (sp?) successfully. The spot that hurst the most is the one inside my belly button. The other 3 are ok. It hurts to sit up on my own so mom or one of the nurses help me when I gotta get up. They upped the dose of dilauded to .4mg every 8 minutes if I push the button, which I do. Because of this, I am extremly ithcy and need 25mg of benadryl every 6 hours which is what they wrote for. I am doing great now, and excited to eat what I want soon. Im still taking it easy but this weekend we have plans to go to Red Lobster as long as Im feeling well and get out of here. The plans are to be here until maybe Friday (Id think at the latest) UNLESS we stay to start chemo early since I missed it last week so really we are a week late. So I either start it Friday or Monday! We'll see. Just to let everyone know, my freinds who were inpatient like Tesfu, James, and Kevin have all been discharged so now its just my mom and the nurses to entertain me lol!
Ok now the bad news it- I was checking other kids' websites and my heart litterally sank into my stomach when I read Emma Grace's page. She earned her angel wings! Im didnt know her personally but I have been keeping up with her momma and daddy's updates for a long time now. She had a donor transplant and due to comlications, has been in a drug induced coma for what seems like forever now. Shes a beautiful, strong, pretty blue-eyed 4 year old who is now in Heaven with her buddy Stanton! Im sure they are living it up together having tons of fun Im sure! Please pray for Emma Grace's family during this horrible time!
Thanks for checking in on me though! I appreciate it greatly and love reading the guestbook entries!
XOXO
Chass
Sunday, June 5, 2005 7:43 PM CDT
Hello Everybuddy!
Wow I just realized how long its been since I updated. Sorry for the delay. I had a doctors appointment on Friday and had 17 platelets. That meant a transfusion to have me tanked up for the weekend. After the appointment we headed over to the hospital for a visit and to give people the nueroblastoma magnets they bought. We visited with some nurses and then of course visited my buddies who were inpatient. First we visited Kevin, who was asleep so we chatted with his parents. He did wake up at the end in time to say bye to us. Then I said hi to this cute little kid Tesfu who has been inpatient for about 3 months and IF he talks or even looks at you, you are extremely lucky. Everyone tries to get him to talk to them, weird how little kids are like that. He waved AND nodded at me lol! He is supposed to be get discharged really soon, maybe tomorrow, lets pray everything goes well for him being back at home. Then I stopped in to see James. What a lazy teen!! He wouldnt get out of bed for anything, the bum! LOL! So we made ourselved at home in his room and talked with him and his mom. Then, we realized what time it was and had to rush home (during Friday rush hour) to pick my brother up from work. By the way, his pink eye has cleared up and he is doing better.
Saturday I went over to a freinds house for the day and then she came over to spend the night with me. We went to the mall and I got some new summer capris! I love to shop but then again what 16 year old girl doesnt!? Jessica and I had lots of fun, but we were bored a lot too. It was too hot to be outside (I hate heat) and there was nothing to do inside. We did end up doing manicure and pedicures though. She brought her little kitten over. My cat hated it but everyone else loved him. I guess that means that kitten my dad was going to get me is out of the question.
Well tomorrow I have a doctors appointment at 2pm!! Thats the latest Ive ever had one since before I started treatment. The afternoon appts are usually for kids who are done. But the thing is, I get admitted afterwards. The will give me blood, platelets, and whatever else I may need and then on Tuesday at 2:15pm I will be getting surgery to remove my gall bladder. And then I want to have a piece of pizza!! Well maybe in a few days lol! But at least I wont have to worry about pain from what I eat! I will update after all that though. Either tomorrow or Tuesday evening!
Please keep my freinds I mentioned above in your prayers to get better and out of the hospital soon. Also please pray for a little boy named Jamie (aka Beebo) who just relapsed and there is nothing left medically to do. They think he only has as much as 3 weeks left. Pray that these few weeks are special and for a miracle!! Thanks!
Thanks for checking on me, and please sign the guestbook, I love reading the entries!!
XOXO
Chass
Wednesday, June 1, 2005 8:57 PM CDT
Hey!
Sorry for taking so long to update. Lets see...The rest of Sunday and Monday went fine. I actually jumped on our trampoline and had lots of fun. I did get worn out pretty quick and then later that night noticed peticea (sp?) all over my legs. It looked like I had tons of little red freckles...lol and is even still there some. I knew that was a sign that I was getting platelets on Tuesday which I did because they were only 6. Not as low as what I had though. Dr P is going to get in touch with the surgeon who did my other surgeries to schedule a date for my gall bladder removal. Probably within the next 2 weeks which Im not too happy about because I was supposed to start chemo on Monday but now thats on hold too. Plus I am off Accutane until further notice. So....all treatment is on hold, kinda makes me feel helpless like Im doing nothing but gotta take care of this first. So that brings me to today....not much happened. I pretty much layed around and watched TV all day. I did go to the grocery store to get stuff to make spaghetti for dinner and then made it..yup all by myself! I made some for mom dad and Cody and then I had to make my own since I cant eat the meat and I have to watch my fat intake so I mostly just had sauce, tomatoes, and noodles! It was yummy though. I so badly want the things that I cant have now, funny how that works! My teacher comes tomorrow so I gotta do some last minute catching up before then. I will try to update later in the week. My next appointment is Friday so sometime after that I guess. Oh yeah Cody has pink eye so Im trying to stand clear of that! Yuck!
Thanks for checking on me!
XOXO
Chass
Sunday, May 29, 2005 0:20 AM CDT
Hello,
Well, I am out of the hospital and at home...yes! In my own bed, and it feels great. I am over that horrible gallbladder pain and surgery to remove it is awaiting good counts. As soon as my counts are up, the stinkin' thing will come out! Im so glad because that is pain I dont want to experience again. As for now, I am on a low/nonfat diet in hopes to not disturb it. So far, so good. I am still feeling a little under the weather but not too bad. My ear is bothering me but not pain, just a clogged feeling. Nothing too bad, so I guess I really cant complain!
***Please pray for my freind Dylan and his mom Melissa. Dylan is experiencing what its like to be septic as is his mom. I went thru all the same things last year and I made it out so I just know Dylan will but please pray for his speedy recovery and a little comfort thru this terribly scary time!***
Thanks for checking on me!
XOXO
Chass
Thursday, May 26, 2005 11:44 AM CDT
Hello Everybuddy!
Lets start out at Tuesday night. I was up late because I couldnt really sleep. At about 11:30 they gave me some pain medicine for a headache I had from coughing. Then at about midnight, I started getting pains in my abdomin. (at the top) Also, my back was hurting really bad. I tried to ignore it but it kept getting worse. I told my nurse when she came in to do vitals and she said she'd have the night resident come take a look at me since it was hurting the same place as it did when my gallbladder acted up before. After waiting for a while, I asked for some Tylenol. The kid across the hall from me wasnt doing to well I guess because all the nurses and residents were busy over there. By the time my resident came to see me, I was crying and rocking back and forth in so much pain. She called the on-call doc and they wanted to keep me away from the morphine because that can mess with your gallbladder, So they tried demorol which I had never had. I waited 20 minutes or so and when it didnt work, I asked for something else. During this time, the pain is getting worse and there is no chance of me sleeping. Then I waited and waited for pharmacy to send up some levsin (for stomach cramping) It was taking too long so my nurse ran to another unit to get me some. It was a PO liquid. I wasnt too sure about it working on this kind of pain. Once again I waited about 20 minutes hopeing it would kick in, but NO! I ended up vomiting it all up. By then it was quater to 7am and the resident came back in my room. I told her that I NEED morphine or dilaudid! I was really in a lot of pain and couldnt stand it anymore. By then, mom was up and rubbing my back. Neither of us were too happy when she said I couldny have any until 7:30 (45 more minutes) Mom let her know that she wasnt happy and that I had been up all night long and nothing they gave me had helped and by then I had thrown up again. (I guess the gallbladder can make you nauseas too) So, she got orders for me to get some Dilaudid. I ended up needing another dose because it wasnt strong enough. By then, Dr Greenberg was there and ordered me a PCA pump and a little extra dose to get the pain under control. It finally worked and I was able to get a little sleep. Then, yesterday I got an ultrasound of my gallbladder and the guy said it looked better then what it had the other week when I was in for pain. The wall of it still looks inflammed and irritaited though. The GI lady came in and talked with me a little. Between them, Dr G, and me and mom, we all agreed it was time for this thing to be removed. Right now my counts are way too low for surgery but as soon as they come up some. Oh and by they way, my gallbladder acted up because I ate a meatball and cheese sub. (ooops, but I was never told that I was supposed to be on any kind of a diet, or else I would have never eaten it, knowing that it would cause all this pain) So now I am on this pain pump and getting benadryl (a small dose) every 4+ hours to keep the itching down. (Dilaudid and Morphine cause me to be extremely itchy...and moody/senstive LOL) I am usually pretty drousy but the pain is gone. They are now weaning me off of the pump so that I could possibly go home tomorrow. Of course they are going to send a diatitian up to talk to me and mom about what I can and cant eat until I have this thing removed. My nurse, Kat is in here right now messing with my lines. I am getting 1 of 2 units of blood and then I will be getting IVIGG sometime this evening. Before I leave tomorrow I will need platelets. I had a nose bleed earlier so that was a sure sign. Thats about all I have to update for now so I will update agian when something new happens!!
Thanks for checking in on me!
*Sign the Guestbook, I love reading the entries!!*
XOXO
Chass
Tuesday, May 24, 2005 2:07 PM CDT
Ok Sorry for the delay in updating but I havent been feeling well. I had fun at the picnic on Saturday even though mom and I were both sick with this cold. Now, everyone in the house has it. Sunday I slept most of the day with a fever. The doctor told mom to give me an antibiotic that we had had extra of and then to come in to the doctors on Monday. I felt really wore out and exhausted when we got there. My fever had went up to 103.8* and never really got below 101.8. I needed platelets yesterday because I only had 1! They were treating me like I had pnemonia because thats what it sounded like. I was having a hard time breathing (nothing major) so they decided to admit me. The chest xray showed no pnemonia so its just a really bad cold I guess. But with no ANC or anything else its harder to get rid of. All my counts are really low or zeroed out. Im not sure how long we will be in here though. Tomorrow is my brothers 15th birthday!! Hopefully at least my mom can go home to see him for a while. We'll see!
Sorry for a short update but Im kinda tired so I will update later!
XOXO
Chass
Thursday, May 19, 2005 4:38 PM CDT
Hello!
Today was a doctor appointment day. My platelets have been dropping steadily the last few days and are down to 19 today. The blood bank was critically low on them so unfortunatly I didnt get any and have to return to try again tomorrow. Thats why we desperatly need people to go out there and give a little of their precious time to donate not only platelets but blood also! I got my Neulasta shot today also. Its only my second one but everything went well. The doctors are talking about it today in their weekly meeting to decide whether or not they will allow parents to give this shot. The problem is: its a new shot to our office and its a one time shot that lasts for 2 weeks instead of nightly (neupogen or leukine) white blood cell count booster shots. It stings to get the actual shot and gives bone pain like neupogen but I think its better then the daily bruises from nightly shots. (Plus I dont like needles so less is better!) That is about all that happened today!
I hope the shot starts working soon because this Saturday is the yearly Growing Hope picnic for the Hem/Onc office. Last year was lots of fun so Im hoping for it to be great fun again! Then after that (as long as Im not neutrapenic) we will be going to a wedding. Thats should be fun too! I hope it all works out! I will update soon!
**Please pray for Emma Grace who apparently is not doing so well. Complications to complications from a recent transplant!**
XOXO
Chass
Tuesday, May 17, 2005 5:44 PM CDT
Hello Everybuddy!
I am home and out of the hospital and so is my buddy James! We had as good of a time as you possibly could in the hospital. Our buddy Kevin came on his day off to visit with us and we (including our moms) had a great time with lots of laughs! Until......I had a reaction to some meds and ended up needing benadryl and ativan and that ruined all MY fun....I guess there was a lot less laughs since I was sleeping! LOL! So, I had a clinic appointment yesterday for a 5 day chemo that I started on Saturday. Then I had another appointment today for some more chemo and tomorrow will be my last day! YAY! I still have this bad "cold"! The doctors dont really know what its from so Im assuming its just a cold. They put me on perscriptions for it which are helping a little but Im still miserable. I will try to update later with more info when Im feeling better!
Thanks for checking on me though!
Thanks Colleen for changing my page to dragonflies!! I absolutely LOVE it...dragonflies are good luck!
XOXO
Chass
Saturday, May 14, 2005 12:25 AM CDT
Hello Everybuddy!
Like I said before, they have me all drugged up so its hard to remember what happens what day so I will just fill you on on the events, nevermind the day or the order they happened! LOL! My throat has been very sore and Ive been congested. Yesterday I woke up and my left ear was hurting extrememly bad! I had no idea what it was but it made me scream and cry. After calling the resedent and getting me an order of morphine, I felt a little better. The resedent came later on to check it out and said I had an ear infection which I have never had before! They immediatly gave me an antibiotic and morphine as needed....yup Im a baby I guess to need morphine for and ear infection. Dr Greenberg scheduled me for a CT scan which I never got until this morning...24 hours after he ordered it! It was to check my back because Id been having pain and he wanted to make sure it wasnt cancer or anything. It turned out to be a spot of "old" cancer. Nothing new so not a big deal. I woke up this morning with a fever so my nurse took cultures and now we are waiting for the results. BOTH my earis starting hurting again a little while ago but not as bad as yesterday...no morphine needed! LOL! My throat is starting to get a little better but now I have an annoying cough! Grrr! My mom was going to take James (another patient in the hospital with me) to a freinds birthday party but with me getting that late CT scan, looks like that wont happen. I just got done getting another round of antibiotics for my ears and am about to get platelets because I have peticea (sp?) and bleeding, even though they are 30! Then I will get Pentamidine to prevent pnemonia! As long as everything goes well, Dr G said I will be discharged tomorrow after chemo and then finish the last 3 days at the clinic. I think that is all I have to report! I will update if anything new happens!
Thanks for checking on me!
XOXO
Chass
Wednesday, May 11, 2005 10:10 AM CDT
Hello Everybuddy!
Ok here I go.... Monday I met with a GI doctor and had some scans done. My memory is a little foggy because I have been on a morphine drip since then so I dont remember all the details of everything. Yesterday I had to have a scan done in Nuclear Medicine twice. The first one didnt show my gallbladder which could mean that its inflammed of surrounded by fluids. The second one didnt show it either and from the ultra sound, we know its inflammed. After that I had to have a procedure done. An Upper Endoscopy. They gave me "the milky medicine" to sedate me. I fell asleep very quick. It was funny because the guy told me to tell him when I fell asleep and I was like "huh!?" But that was the last thing I remember. I woke up in the recovery room and felt perfectly fine. I even got the pictures that they took inside of me. It is groos looking. I mostly stayed in my room and layed or slept because I was sleepy from the morphine drip. Kevin brought me some snacks and my mom some chocolate on request..he is soo nice. He even stayed after his shift was over to chat with mom and me. We had a good time with lots of laughs.
The last 2 nights, my nurse has had to put oxygen (the nose thingy) on me because my oxygen levels were low while I was sleeping. I also got benadryl a few times because I am so itchy from the morphine. This morning I woke up with a very sore throat. My voice is all scratchy and coarse sounding. We are thinking it was irritated by the tube they used for the endoscopy. I am starting to get a little bit hungry after not eating since Saturday (except for a bowl of chicken noodle soup on Monday night) but I cant eat because my throat is too sore to even swallow water. Its really hard to take pills also.
We should find out today what the results are to all the cultures and the biopsies from my tummy and all the other tests they have done. Then we can discuss what the next step will be to fix it all. Since I dont have a fever, they dont want to put my on an antibiotics for my gallbladder but they may have to if it doesnt shrink back to size on its own. We will see later on. I will update when we know something. As of know, we have no idea on how long I will be in here, probably through the weekend so I can start some chemo.
Thanks for checking on me!
XOXO
Chass
Monday, May 9, 2005 4:14 AM CDT
Hello Everyone!!
I have got lots to report. First of all thank you soo much for all the compliments on my new page setup, even though I did not do it myself. This little NB girl- Kaitlyn , her mom did if for me! Thank you soo much Colleen! I LOVE the page!
*Friday~ I got up fairly early and went to a meeting with my mom at my brothers school. It was pretty boring. After tha we got ahold of Jamie and she met us at the store with Ricky so that we could get his 6 month pictures done. He smiled the whole time without any effort from us and the pictures tured out fabulous! Then they came back to the house with us. I watched Ricky all day while Jamie slept, she had worked night shift the night before and was sleepy. Mom took Ricky and I to the grocery store to pick up some things for dinner and he slept the whole time. On the way home, we stopped and picked up my freind Jessica to come hang out for a few hours with me. While Ricky slept, Jessica and I looked at my baby scrapbook that I had just finished. I found some pictures that I forgot to put in it so now I have to get extra pages for it and rearange it some. We also made bracelets for two of the nurses at the office who had asked me to make them each one. It was fun and we also enjoy spending time together since we dont see each other as often as before I got sick. By then Ricky had woke up so I fed him dinner. He has a bad cold and recently found out he has athsma so he just wasnt feeling so great. He didnt have much of an appetite so mostly he just had a bottle. Then Jessica and I ate our dinner while watching him and catching up on everything that has happened since we last saw each other. It was after 10pm when everyone left to go home and I was just exhausted and in lots of pain. I went to sleep a little while after that and slept well.
*Saturday~ Mom and I slept in from being so tired from the day before. Around 1:30 we headed to PA to see my grandma and uncle, aunt, and cousins. Its only a 3 hour trip but I slept the whole time. We stayed at my grandmas house. After visiting with her for a while, I tried calling my uncle, Shane but he had to go to work that day. He did stop by for about an hour to see us. He really liked my baby scrapbook that I made and I felt proud of myself because I thought I did a good job too. Then Grandma, Mom, and me went to the store and we stopped at the cemetry to see my uncle's gravesite. After that. we stopped to grab something for dinner and back to grandmas house we went. We all ate and then chatted for a while. I got online as usual to check on all my freinds and check my email before going to bed at about midnight.
*Sunday~ WELL....4:15am I woke up in a LOT of pain. MY back hurt really really bad along with the top of my stomach,,,,not nausea but pain! I was crying and mom was trying everything she could to keep me quiet and out of pain. I guess from all the pain I started to get a little Nauseus. Right in the middle of dry heaving, I looked up at mom and said "Happy Mother's Day" more sarcasitc than anything because I knew it was off to a bad day. After taking 2 Tylenol #3 and an ativan, we waited about an hour and I was still feeling horrible and I was begging her to take me to any ER for some morphine to get rid of the pain. After she explained that wouldnt work, it would take longer then it would to just drive home, I begged her to get me home ASAP to call my doctors. She then packed up and we were back on the road by a little after 5am. I felt so bad to be doing this to my mom especially on the the one day out of the year that was for HER! I tried my hardest to sleep while driving home but eveytime I would doze off, Id jerk awake in pain and then realize I got a whole 2 minutes of shut eye!! It was a miserable trip for us both. We got home before 8 and mom emmediatly called Dr Weil. I then startd vomitting a lot. She explained everything to Dr W and she told mom to bring me in if I was in that much pain. Mom got a quick shower and packed some stuff up while dad tried his best to relax me and tell me jokes but I just wasnt in the mood...thanks for trying tough dad! Finally we were at the hospital and my resident Alexa came in to write orders for some morphine and ativan. I had vomitted pure bile just before she came in. I had to rush her because my belly hurt so bad but within a few minutes my nurse was pushing 3.5mg of morphine. unfortuanatly that didnt work so I got more a little while later. About every 2 hours I was getting morhpine and every 4 I was getting ativan. I only needed ativan a few times though. I had to go for an xray while drinking this nasty bairum stuff that is soo thick and white. Yuck it was groos but I did it. It was hard for me when they made me lay on my side and belly because it hurt but I did it. Then I had to go get an ultrasound and that hurt too because they had to press pretty hard on the belly. The man was really nice though. He saw that I was very sleepy so he brought me up on a stretcher instead of the wheel chair I went down it. They found that my galbladder is inflammed and we are not sure yet what we are doing about that.
*Monday~ I am going to see a GI doctor and then from there hopefully we will know what to do about the inflammed galbladder. As of now I am NPO...well I take that back, they are letting me have clear liqiuds now. Im not sure what this has to do with anything. I am not starting chemo at all this week until we find out whats going on and I dont know how long I will be in here either. Hopefully I will be out by the weekend because I have a birthday party for go to and also a wedding shower. I am very upset that I am not getting to see my Best little buddy Ryan today at the office!! I was soo looking forward to seeing him! I will update later on when we find more out on whats going on!
Sorry for writing sooo much but thanks for checking on me!
Happy Mothers Day to all those moms out there!
XOXO
Chass
Thursday, May 5, 2005 2:46 PM CDT
Hello!
The last 2 days I just layed around (after sleeping in until past noon) and watched TV or just layed in bed. I just felt really lazy and tired. Mom thought maybe I needed blood but todays office visit showed that I didnt. My hgb was 10.7 and platelets were 36. Not too bad. I dont have to go back until Monday for possible transfusions and definatly chemo. Another Topo/Cyclo week. Also one day I will be getting Pentamidine and another day I will be getting an ultrasound. (since Ive had chemos that are so harsh on the intestines plus the infection that was in there, my doc thinks that is where my belly pain is coming from) Mom and my docs are fighting with the insurance because they dont want to cover my PET scans because there have been studies saying PET scans dont detect NB very good. Well that may be true in some cases whereas MIBG is a great detection for NB but in my case stuff is showing up on PET and not MIBG so I need it. If it comes to it, I will just have to get admitted!! See how they like that bill! Hopefully it will all work out though becuase its pointless to be admitted just long enough to get a stupid scan. I have been feeling pretty good well today anyways besides the back pain. Sunday will be my last day of Accutane until after chemo week is over so I should have a pain-free week but then I get to deal with chemo side effects! Ahhh It just never ends does it?! But I actaully dont get too nauseous from these chemos so its all good! I cant wait until next week though! One of my BEST little buddies, Ryan is back from Duke after having a transplant and I hear he is feeling and looking great. But he will be there a lot next week and I cant wait to see him. Please pray for his cancer to go away and stay gone!
I will update soon!
XOXO
Chass
Monday, May 2, 2005 6:13 PM CDT
Hi People!
Lets see where do I start?!
*Saturday~ First, me and my dad went grocery shopping. I did all the work, all he did was pay! LOL Then, Jamie (my sis) and Ricky (her 6 month old) came over for a few hours. I played with Ricky the whole time. That included feeding him yucky babyfood, giving him a bath, and feeding him his bottle before they left so that he would sleep on the trip home. And guess what?! After I got him bathed and all dressed in a new clean outfit, he puked! Yuck! I had lots of fun with him though. It was quite a workout holding him (he is 18 pounds!) and I have like NO muscles! lol!
*Sunday~ It was kind of a lazy day. Mom and I went to Costco to get food for the office and then she got some movies from Blockbuster but besides that, not much happened!
*Monday (Today)~ I had a doctors appointment. My platelets were 9 and the blood bank had lots of extra platelets so they gave me 2 units instead of my normal 1! We ordered some food for lunch, I got a pizza! YUM! My nurse was Mary and she had to draw some cultures since I finished up Vancomycin on Friday night. I am hoping that they come back negative. If not, my line has to be pulled. I just got it in in January but this makes the 3rd or 4th infection since then. They should call tomorrow to let me know. The good thing is- I dont have to go back to the doctors until Thursday! I was hoping for Friday but hey this is good enough! Then next week will be my chemo week. Dr Perdahl felt my hips and stuff because they were really hurting me. I thought it was bone pain from the Accutane but she thinks it is muscular pain. Also, she is setting me up an ultra sound because my belly has been sore. She thinks that thats from irritataion in my intestines from all the chemo and stuff. We will see. Im still having lots of pain in my pack, hips, and occasionally other places along with the headaches but I am starting a new pain medicine so maybe that will help better. I will update later when I find something else out! Thanks for checking on me!
XOXO
Chass
Friday, April 29, 2005 8:02 PM CDT
Hello Everybuddy!
Yesterday was a very uneventful day. I slept in and then just layed around most of the day. I did work on my scrapbook which was fun and I have done a really good job so far. I read some in my book The Scarlet Letter for school, its pretty hard for me to understand how it is written but everyone says it gets easier and better. We are going to get the movie so that I can understand it better while reading it.
Today I had to get up really early to be at the office by 8:30! I was really tired. My counts were better but I still needed 2 unints of blood and 1 unit of platelets. I was having vision problems which always ends up in a horrible headache. I refused to take any meds until I actually got a headache..I hate to take anything unless I really need it. Well, I started getting a bad headache and Tylenol didnt help at all. It actually started getting worse. These headaches are from Accutane and I get them pretty much daily sometimes more then once a day (if they dont last ALL day). Mom and my nurses had to talk me into taking morphine for it. I refused it too for a while because I dont lie to take any meds like that but it got bad enough so it worked out. I did have to get 2 doses before it went away but that only lasted for a little while before it came back. I was pretty upset and moody all day. (side effect to accutane) I was upset about my freind Ryan who needs your prayers. He just had a bone marrow transplant 70 days ago and they just found that the cancer has returned...please pray for a miracle for him. Thats how my day went...kinda crummy but hopefully the weekend will be better! Thanks for checking on me...and remember to spend time with your loved ones and tell them you love them everyday!! Appreciate what you have!
XOXO
Chass
Wednesday, April 27, 2005 7:04 PM CDT
Hello All!
Today was a busy day but it went by really quick, well at least I think so. My hgb was 8.7 so I got 2 units of blood. After my platelets transfusion yesterday, I got bumped to 56 and then I was back down to 16 today!! Wow they are dropping quick. Because of that, they gave me 2 units of platelets so that I could skip tomorrow and go back Friday to fill me up for the weekend. "Vertically challenged" (short/little) Mary was my nurse and I think she gave me watered-down products because I didnt get much of a boost from either the blood or the platelets! LOL just kidding! Kelly came in and sat and chatted with me. (shes the Bone Marrow Transplant Nurse) I had her a lot as my nurse when I was getting my transplant 6 months ago! I got NO benadryl and NO solu-medrol today for my platelets and I didnt react! Thats good news, so now I dont have to get premeds except Zantac but thats no big deal. I also did some homework and started reading my last book for Creative Writing/Literature. The book is The Scarelet Letter! So far its alright but everyone at the office said it gets better as you go. Well I will update later this week! Stay strong and happy!
XOXO
Chass
Tuesday, April 26, 2005 9:04 PM CDT
Hello People!
Yesterday we didnt really do much. Mom and I did a little shopping and then I went to a freind's house when she got out of school. We had lots of fun just catching up, eating (our favorite thing..and this girl is soooooo skinny) and we jumped on her trampoline until we got cold and I got tired, then we just watched TV and ate dinner until my mom picked me up at 9ish!
Today I had a doctors appointment. My platelets were 6 but I already knew they would be low because I had been getting little nose bleeds for the last 2 days. Also my hgb was 9.2 which is low for me (I get transfused under 10) This all explains the nose bleeds and why I got tired easily from jumping on the trampoline. Its a combination from last weeks chemo and starting a higher dose of Accutane aka Craputane on Saturday morning. I have been getting Craputane headaches since Sat night on and off. I have been staying away from the narcotics because they keep me up all night-wide awake until usually 4-5am and then I am exhausted the next day so I am sticking with Tylenol and that is helping some for now. Tomorrow I will be going back to the doctors to get 2 units of blood. Oh yeah all the rest of my counts are way down too. WBC-0.4 and I am very neutropenic. My ANC is Zero! That means no fast food or being in crowds...gggrrrrr!
Well, I will try to update tomorrow if Im not too tired after a day which Im sure will be long! Oh I just wanted to say that I got platelets withOUT benadryl again and did NOT react YAY me! They are also slowly reducing the solumedrol!
*Thanks for checking on me!*
XOXO
Chass
Sunday, April 24, 2005 8:10 PM CDT
Hello!
Not much to update on but today went well. A while after I finished my Vancomycin balls, I REACTED!! Yikes! I just got a mild case of Red Mans. Mom and I were driving down the road when she said my face was getting blotchy red and within 10 minutes it was bright red. We went home so that I could get some benadryl and withing a few hours, it was back to normal. Im not sure why I have to take benadryl because I mean its just red skin, I would normally think hey no biggy but I geuss they have their reasons. Anyways, everything was fine and I spent some time typing up some reports for school. And out of no where my teacher just called a while ago to let us know she wont be able to come over for a little while. Her mother had a massive heart attack today and isnt doing well so she has to fly out there to be with her. Please pray that things are ok with her. I will update tomorrow or Tuesday to let you know how Im doing! Thanks for checking on me!
Good Night!
XOXO
Chass
Saturday, April 23, 2005 8:57 PM CDT
Hello Everyone!
I was in the hospital today for platelets and it was actually a good day. I got to see my little freinds Anna and Kristen. I also got to see all my nurse buddies. One of my favorite hospital nurses, Chelse was my nurse. Thanks to her encouraging Dr Greenberg about the Neulasta shots, I was able to get that and now I dont need another GCSF shot for 2 whole weeks! YAY...gooo Chelse! Kevin (my buddy) was my tech today and we had lots of fun. When I first got there, we had a syringe fight and I squirted him with that foam hand sanitizer stuff...he was covered. It was really funny. We had made a mess but whol cares... I also made a glove balloon for my freind Michelle who was next door to me but I could go see her because I think she had a fever. Pray that she gets better soon and can go home! I also did Chelse and Kevin's hair. Chelse's looked really cute but Kevin's was just heeeelarious!!
Well, we were there for over 7 hours for a 2 hour transfusion! Well, like I had said before, I was swelling up a lot from all the solu-medrol so I convinced my doctor to skip some of my premeds since I hadnt had an alergic reaction in so long. She said we could have the solu-medrol cut in half and no benadryl but to have it on hand. I also got the zantac but that doesnt bother me so I didnt care. I (for the first time) stayed awake for the whole transfusion. It was great! So know we are going to do that..well I geuss untill I get hives! Im not sure what my post counts were because we didnt want to have to stay for another 1-2 hours. That was my day. I will update later on !
P.S.- KELLY- MY MOM SAID SHE FORGOT TO WRITE YOU A NOTE AND STICK IT ON YOUR HEAD SO SHE SAID DONT FORGET HER MONEY!! WE WILL BE IN THE OFFICE TUESDAY!! LOL!! HOWS THAT FOR A SHOUTOUT?? LOL..SEE YA TUESDAY!
XOXO
Chass
Friday, April 22, 2005 8:06 PM CDT
Hello!
Today was another pretty short day at the office. I saw the doc and got chemo and thats it. I needed platelets but the blood bank was low and wouldnt deliver any unless you were super low and I was 18. I will be admitted tomorrow for the day just for a platelet transfusion. If I dont get a good boost from that, they will give me another unit. I have never had 2 units at once so that will be different. Hopefully I wont need it because we all know how slow the hospital is and with my needing remeds I will already be there all day! Im looking forward to seeing my buddy Kevin who works weekends. He's really cool and has me laughing for hours so it should be fun.....while Im awake anyways. Of course we will pack an overnight bag..just in case. You know if we dont then I will end up staying over night for something else. I will also be getting this new shot. Its in place of Leukine (GCSF) I only have to get one shot and it will last for 2 weeks instead of getting a shot daily until my WBC comes up. The only problem with it is its a form of Neupegen which game me bad bone pain (thats why I switched to Leukine) and then also tomorrow I start Accutane again (I take it while Im off chemo) and the dose is 80mg a day instead of 50mg. That will more then likely cause pain so the 2 of them together will probably have my in a bit of pain. I had the choice to stay at 50mg and keep getting Leukine so that I wouldnt get pain but I hate doing shots daily and I really want this cancer gone so I am willing to deal with the pain. Anyways, I am doing really well today as well as the rest of the week. Now I am just relaxing and watching TV and I plan on catching up on some homework over the weekend. Thanks for checking on me! I appreciate it tons!
Prayer Request:
*My freind Dylan who is having pain...please pray that his pain disappears and that its not disease progression!!
XOXO
Chass
Thursday, April 21, 2005 4:56 PM CDT
Hello All,
Sorry for not updating yesterday....it was another pretty long day. I just got chemo but the post hydration took a while. Terri (Chris's Mom) made me brownies...or I should say one BIG one! It was really yummy and everyone liked it...I shared! I came home, ate, watched some TV, and then went to bed.
Today was a short day. Kelly was kinda my nurse...until she gave me up....:( LOL! I only got Topotecan today so I didnt need post hydration. We were out of there by 1. We had to stop at Sears to get vaccuum bags and look at lawn tractors cause ours is broken! Mom got me some Checkers food after that which was good. I went to the store with my dad and then came home and made dinner. It was my favorite...
spaghetti!! I did a good job too..LOL! My appetite is finally decreasing a little. I will have to get platelets tomorrow so that means more solu-medrol so we will see what happens. Even though I only get it a couple times a week, its still a steriod and we think thats whats made me so hungry lately. I havent had it in a week and finally Im not eating so much. Anyways...I will update tomorrow, hopefully!
Thanks for checking on me!
XOXO
Chass
Tuesday, April 19, 2005 8:00 PM CDT
Hi!
Today was a long day at the office. AnneMarie was my nurse and when I got there she disconnected me from my Vanc balls and drew blood for my counts. Then she put TPA in for 45 minutes. My hgb was 8.2!! Platelets-30...not too bad. Then she drew cultures and started my chemo after I was seen by the doctor. It took a little while for the chemo to run and then she started me on my first unit of blood. That unit took FOREVER to go in...my line was running slow. It was after 5 when that finished so we used a pump for the next unit. We didnt get out of there until 7:30!!! I was really tired by then. I did fine all day though and needed no extra meds from chemo of the blood. I ended up starting a new book for school and read half the book. After that I only have 1 more book to finish the whole class! YAY! My appetite is finally starting to be more normal..not soo much food anymore. Im starting to swell up. Of course I will still be eating my ice cream when I get off of here! LOL! I am pretty tired, just wanted to let everyone know how I did today. Oh...so what does everyone thing of the new Pope? We watched him give his first speech on TV at the office. Thanks for checking on me!
XOXO
Chass
Monday, April 18, 2005 8:58 PM CDT
Hello Everybuddy!
I had a nice weekend. It was like the good ole days before I was diagnosed....mom, dad, and Cody were outside doing yardwork while I was inside in bed...LOL what a typical teen huh? I actually read the rest of my school book and am now ready to write the 10 page book report..YUCK!!! Mom and I did the normal house shopping which was fun and even though my hgb was slightly low, I was able to do all the walking and not have to go out to the car early from being too tired!! YEAH!! I am still eating a LOT! Which I guess is an ok thing compared to most kids who are on appeitie stmiulants and here I am eating enough food to feed the whole northern hemisphere! My favorite food right now is vanilla ice cream with milk and crushed up oreo cookies in it!! YUMM!! You can only imagine the weight Ive put on but Im sure before long somethin will come along that forces me to stop eating so...Im litteraly "eating" it up! Anyways... I had a doctor appointment today and it went well. My hgb is 9.1 which is low for my because of my leaky heart (for those who dont know...its NO big deal but I get transfused below 10) I will get blood tomorrow because I wasnt type and crossed. I got chemo and IVIGG today. I slept thru the IVIGG from the premeds (benadryl) I was happy to see my buddies Ashleigh and Ayman today!! MY platelets were 30-something so I will need transfused later this week. So far so good with the chemo though. I actually went outside after getting home (at after 6pm) to ride my bike for a while. I really wore myself out by that but it was fun. Mom and I ran to the store to stock up on my oreos and ice cream!! I better go run and make some....Ill TRY to update tomorrow evening! Thanks for checking in on me!
XOXO
Chass
Friday, April 15, 2005 8:21 PM CDT
G'Day Mates!
Remember how I was in the hospital like a week or so ago with an infection and I came home on VAncomycin balls? Well we finished them up on Wednesday while in NY. Oh yeah by the way we made it home today safely! Anyways, on Wed. they drew blood cultures up there and today we got a call from them saying that my cultures (even after 14 days of antibiotics) are still positive. We had to call my VA doctors to let them know. They had us come in to the clinic to do more cultures with TPA and order more Vancomycin balls for at home. So, now I am back on that for another 14 days...lets just hope for NO fevers! My hbg was a little low and we were told to call ASAP if I get tired or more headaches then usual and of course if I get any fevers. Now....my next treatment step is chemo next week. I will continue the Topotecan/Cytoxan for 2-4 more rounds and then return to NY for restaging again to see where we are. The plan is to just continue with these chemos for as long as they stablize the cancer....for some kids I know they are going on 8 and 9 years!! WOW! My doctor informed me that if people could live with diabities that I could live with this...so Im just glad that Im lucky enough to respond to chemo. He was asking me about my social life and school and said he wanted me to live a somwhat normal life while in treatment since these chemos are low dose. Its nice to know he cares!! Anyways, I will update this weekend or Monday!
Enjoy the weekend! Thanks for checking on me!!
XOXO
Chass
Thursday, April 14, 2005 6:11 PM CDT
Hello Everybuddy!
Sorry but I was too tired to update yesterday. I had my bone marrow aspiration and my PET scan. I was injected for my MIBG scan which I got today. I also had a CT scan today. We ended up doing a LOT of waiting around to be scanned. Some of the machines were broken..gggrrrrrr! My legs are pretty sore from all the walking around that Im not used to doing. My hips are also real sore from the bone marrows. Dr Kushner came down special to see me and talked to mom and I about my next step in treatment. So far from what he saw of my scans, they look the same or even a little better then the last ones. Since there arent really any spots showing up on the MIBG scan, Im not able to do the MIBG treatment. The paticular 3F8 treatment he wants me on is back on hold and it may be a while before they reopen the study. He feels that for now it is best for me to just continue the same chemos I have been doing back in Va for another 2-3 rounds and then return back to NY for restaging again. The chemo is pretty low dose and he wants me to be able to do normal everyday things and not spend soo much time at the hospital or office. Its nice that he understands the importnace of trying to do normal things every once in a while. He asked a lot about how school was and if I spend time with freinds and what my summer plans were. He is really nice and has a good sense of humor. My platelets were only 21 and since I am flying home in the morning, he decided to transfuse me. It was my first time getting any transfusions outpatient here. I slept because of the benadryl. Mom and I were really glad by the time we left the Day Hospital because we hadnt eaten all day and were really hungry. Dr Kushner will call us early next week to give us the results from the rest of the scans/bone marrow. I will update after we get home!
XOXO
Chass
Tuesday, April 12, 2005 8:08 PM CDT
Hello Everybuddy!
We had a nice flight and arrived here at New York safely bu 6:45! Right after we got our bags in the room, we went to meet Dylan. I have been so excited to meet him and his family. He is too cute!! His mom Melissa and dad Tim were really nice also. They gave me a gift of an Australian animals calender and some Australian things. MMmmmmm the chocolate was really good! Thanks guys! Dylan was shy but after a little bribe from his mom he chatted a little. We visited with them for a while before turning in to the room. We are just now eating dinner and getting unpacked. We hear that my freind Jay is in the hospital...not sure why but we are going to try to visit him tomorrow. I have to get up pretty early to be over at the hospital by 7am to start my day of scans and bone marrows. I will update sometime tomorrow afternoon with how everything went!
XOXO
Chass
http://www2.caringbridge.org/me/dylanhartung
http://www2.caringbridge.org/md/jaybarnett
Monday, April 11, 2005 5:32 PM CDT
Hello Everybuddy!
Just a quick update...I had a doctors appointment today and needed platelets and pentamidine. I slept the whole time, as usual because of the benadryl! We came right home and had 5 Guys for dinner..it was yummy! I am now getting a bad headache, so I am off to take some tylenol and rest some.
I leave tomorrow evening for New York. We should get there around 7pm. I will update to tell how my trip went when I get there!
Contine to pray for Zach and all my other freinds who need it!
XOXO
Chass
Sunday, April 10, 2005 4:56 PM CDT
Hello Everyone!
Yesterday I slept in until around 11. I mostly just layed around and watched TV. I also watched my brother set up and plant seeds in his garden. In the afternoon, Mom and I went shopping. First we went to Old Navy where I got 2 new shirts and I got Cody a pair of flip flops...What a nice sister?! Then we went over to Best Buy where I got a CD, a Nintendo DS game and a carrier for my games and the system. I bought all this with a gift card from my pal Kevin (from my birthday) Cody and I have been taking turns playing my Nintendo since yesterday and trying to beat each other's score! So far, Im ahead! YEAH!
Today we went to Costco to buy food for the office. Also, we got a scrapbook so that I can start one of the family pictures (like of me and my siblings from the time we were born til now) I like scrapbooking and we have soo many old pictures so hey it should be fun! The weather was sooo nice this weekend. After dinner Cody and I are going to ride bikes....its been a while since Ive done anything like that but I have been feeling really good so it should be fun! I will update after my appointment tomorrow!
Thanks for checking on me!
XOXO
Chass
Friday, April 8, 2005 10:08 PM CDT
Hello Everybuddy!
I had an office appointment today. Guess what I needed?!.... platelets....they were only 2!! I wonder if I will ever break that record. I slept from the benadryl but when I woke up, my mom had ordered me a sub the I ate right away...guess I was hungry. By the time I was done eating, my platelets were also done. AnneMarie drew my blood and gave me my postcounts. I had jumped to 49, not too bad. After that, we headed over to the hospital to visit and pass out the Neuroblastoma magnets. Everyone was happy to finally get them. Others who hadent ordered got jealous and wanted some too. (Misty- that mean we will need more LOL) I visited with my buddy Parker for a few minutes. I had to stay out of his room because he still had a fever and I didnt want to catch anything. I also visited with all the nurses and my pal Kevin. We were all cracking up laughing...I laughed soo hard that my scar on my belly started hurting! I had a really good time though. Its always nice to visit and not be addmitted. Some artist had been to the Hem/Onc floor and painted a mural on the wall. It was really nice and colorful. Rainbows, planes, angels, ladybugs by my freind Ashleigh's request and a dragonfly by my request. They are both signs of goodluck. I started to get a headache but assumed it was from all the laughing. I tried to let it pass for a few hours but ended up taking some pain meds after it steadily got worse. An hour after taking the meds, it was still getting worse to I took a second pill. Finally 3 hours after that, it slowly disappeared. I went to the store today and got 2 new spring outfits. I also got some new socks and a short sleeved robe for the warmer weather. We then had Pizza Hut for dinner. It was yummy. After that, mom Cody and me went for a ride and got some ice cream from McDonalds. It was yummy too. This weekend we will be shopping some more and preparing for New York. We leave Tuesday evening. We have to make sure Dad and Cody have enough "easy cooking" food while we are gone...LOL Just kidding. I will update after the weekend.
**Please continue to pray for Zach! www.caringbridge.org/il/zackallen He should be leaving today for California. I hope he really enjoys it. I hope that sometime soon we will get to meet.**
XOXO
Chass
Thursday, April 7, 2005 2:44 PM CDT
Hi!
~**I mostly wanted to update with a prayer request....its for my freind Zach. He is also a teen fighting NB like me (which is uncommon) Most kids are diagnosed by age 2. Zach has been fighting for a very long time and is in much pain right now. They are trying to keep him comfortable with IV pain meds for now. They were told to let him do what he wants so they are taking him to California this weekend...please pray that the pain is under control enough for him to enjoy the trip. He really deserves it! Visit him at: www.caringbridge.org/il/zachallen**~
I went to the orthodontist this morning to pick up my retainers. For those who dont know, I had braces for a year and then the day they told me that I had "relapsed" we were forced to have them taken off (one year into them and one year too soon) Everyone there was thrilled to see me and that I was finally growing some hair. I got the retainers (for grinding my teeth from some meds at night) and then we went grovery shopping. Those things hurt my mouth but I will get used to them in a few days. I have felt really lazy today. When we got home I took a 2 hour nap and we constantly checked my temp (just to make sure) because I was cold but Thank God...no fever! I just havent felt "energized" today. Lets hope it doesnt mean my counts are low! Ill update after my appointment tomorrow!
XOXO,
Chass
Wednesday, April 6, 2005 3:14 PM CDT
Hello Everybuddy!!
I think today was the quickest office appointment ever! I got in and out by noon! Surprisingly…I didn’t need any platelets. They were still pretty low at 30 but that’s not bad for me. My counts are all really good. My WBC went way up since yesterday so I got to have my Insuflon taken out. I was in a hurry and had half of it out by the time my nurse came in. I was excited to be leaving early. Of course my nurse (AnneMarie) from last Thursday informed me of all the silly things I said in my “drugged” state of mind last week when they had me on Ativan and Morphine when I had the chills from that fever! I was quite hilarious!
After that mom and I stopped at the mall to pick up her cell phone car charger that the stupid place cant seem to send by mail. I got my all time favorite pretzel from the pretzel place and an Icee! We also stopped at Hallmark to get some charms for out charm bracelets. I got a purple dangly flipflop one! Mom got my brother, sister, and my birthstones for hers. Then we headed to my sisters house to visit her and my nephew. He is getting soooo HUGE and he is only 5 months….today actually. He looks like he is almost a year old. Jamie (my sis) trimmed mom’s hair while I played with Ricky. We didn’t stay too long but we had fun.
I don’t have another office appointment until Friday and then I should have one Monday or Tuesday before we fly off to New York Tuesday evening. Hopefully my platelets will be on the rise by then. I am on Vancomycin “balls” at home until the middle of next week to make sure this infection is gone. Also, I am back on Accutane so we will see how the counts are with that. I am only on 50mg (I originally started on 250mg) a day. I think as long as I tolerate that well I will be bumped back up to 100mg. Im pretty excited to be heading to NY but as usual, anxious about the scans. I am sure they will be good and I will be able to start the 3F8s soon! We will fly back Friday morning. I will update later this week to let you all know anymore news! Thanks for checking on me!
Love and Prayers,
Chassity
Monday, April 4, 2005 10:27 PM CDT
Hello Everybuddy!!
Change in plans...what else is new. My VA doctors called my NY doctors and they dont really want me flying up there until my platelets issue is stabalized. Also they want to get this infection under control. Its some kind of Staph. It was a close call though, when I first came in here, Dr Kitchen had me ready to go over to the PICU because my blood pressure was bottoming out. I was really close to being septic. NEVER delay calling the doc if you even have a slight fever!!! Anyways...We will delay going to NY for maybe another week. I was really looking forward to going but oh well. Plus, its going to be weird with no Amanda...I was excited to see her and had NO IDEA she wasnt doing well. It was a total shock when I found out about her passing away. Im still in disbelief! She is in a better place though!
I am still in the hospital until the morning to see if I need platelets. I have been getting them everyday now for 3 days and before that it was a few times a week. I will also start the Accutane back up back at half the amount so hopefully that will mean no more pain! My appetite has been well really GOOD! I have been craving chocolate which is uncommon for me but hey whatever floats my boat. The are d/cing another antibotic in the morning but I will go home on Vancomycin. My morning platelet count will determine my next office appointment but Im guessing it will be Wednesday and Friday! I have the feeling my office docs are going to lecture me for waiting at home with a fever!! YIKES! I will update in a day of two...thanks for checking on me!
Love and Prayers,
Chassity
Monday, April 4, 2005 10:16 AM CDT
Hello Everybuddy!
I am still in the hospital but doing well. I am rercieving platelets as I type and am sleepy from the premeds! I will be getting up extra early in the morning to head to the airport for New York to get restaged. The Dctor might let me go on pass for a few hours so that I can go home and pack my own stuff instead of mom doing it but it looks like I may have no choice. I might have to get platelets again tonight so Ill be set for the trip. Also IVIGG is a possibility! Pplus we just found out I will be gettinng an ECKO soon. I dont know how this is all going to fall into place but I just want to be able to go home for a while to pack. Its a little hard telling someone what to pack for you and I love that part! I know Im weird. Well I just wanted to write this little update to let you all know Im still in the hospital and on antibiotics but will be heading to NY in the morning! I will update again after we arrive.
Thoughts and Prayers,
Chassity
Sunday, April 3, 2005 9:05 PM CDT
Hello!
I am still here in the hospital with my favorite night nurse, Lisa, by my side. She just gave me some ativan for nausea so beware this update. I am a little on the sleely side now and kinda out of it but besides that I am feeling better. I slept most of the day aways because of all the IV Benadrly I get in the morning. It just knocks me out for hours. By the time I finally woke up it was a little after lunch time and Kevin came to my room to eat his lunch with me! We chatted a bunch and "interupted" all the patients in the hall form laughingh soo hard. They would come in and be like "Hey whats going on!" LOL! We had fun. I tried to spend as much time as I could with him considering he was working but he made time for me. My freind Amanda has passed away on Aril 1st......if it could have only been a horrible April Fool's Trick but unfortuantly, she is an angel watching over us all now. I had a specail bond with her considereing she was the only teen girl I knew whith NB. (Since its so uncommon for girls at that age to have it!) Please know that she went in peace and pray for her mom VIkki and all the rest of her family as Im sure she will be very missed. Also pray for her freind Jay (also a NB teen) who was close freinds with her. I didnt take the news too great when I found out but I am I guess "accepting" it more now. I have been spending most the day with my buddy Kevin who has really helped. He is always there when I need him and dont want to talk...he never makes me do anything but laugh!! I had a nice day with him even though I felt guilty with Amanda being gone and Ive been looking forward to seeing her this week. Nothing I can do though but know she is in a better place now! God Bless you Amanda!!
As for me I have been doing ok. I came into the hospital with high fevers, low blood pressure problems and the Doctors had reserved a room over at PICU for me. I was heading for a septic shock! Everything tunred around and I am going great now! Im gettin a little nauseas every now and then but with all the antibiotics Im on thats to be expected. They took me off of the Accutane because it was causing just too much bone, joint, and head pain! They were giving me tons of mrphine and ativan to help keep liquids doewn. Luckily everything has turned out ok. In order for me to still be going to New York on Tuesday, Id have to be discharged tomorrow which is still up in the air as is New York. I will tell you when I know. My fevers are all gone and I am now on only 2 antibiotics now!! Yay! Plus getting platelets every other day or so. I get benadryl for platelets and one of the antibiotics so you can only imagine how much Im sleeing! LOL!
I just have one special prayer request for my freind James who is in the hospital with me...He is about my age and is recovereing from a double stem cell transplant and just now tonight spiked a fever!! OH NO!! But that can sometimes be common, so I guess we arent too worried at the moment but we need to pray that it doesnt mean anything bad!! Thanks!
Love and Prayers,
Chassity
Friday, April 1, 2005 1:57 PM CST
Hello Everybuddy!!
Right now I am sitting here with my buddy Kevin while he is eating yummy smelling food!!! Yummm!
Sorry for not updating in sooo long. I attempted to the other day but I got kicked off right at the end so it was all erased. My office visits have been fine. Still getting platelets and sleeping thru them.
Wednesday night I started to get a fever. It steadily went up all night to 102.8!! Even though I was taking Percocet that should have dropped it. I was having lots of pain from the Accutane. We didnt call the doctors even though we should have because I knew I had an appoinment the next day. By the tim we got to the office, it had just all got worse. I had a fever over 102 and had the chills really bad. My headache was pretty bad and I was really thirsty but got nauseas from drinking. The frist thing they said was " Your going to the hospital!!" Then since there wasnt a bed oped yet, they drew cultures and started my antibiotics there. I got Ativan for the nausea and Morphine for the pain. I was pretty drugged. Then at about noon, Mom and my nurse walked my safely to the car and we were off to the hospital. Because of all the drugs on board, I was wheelchaired up. The emmediatly gave me more meds and hooked me all up. More cultures were drawn and the headache was still there with the nausea so I also got morphine and a big (way too much) ativan thru the nigth. I dont remember anything. I saw that I had an innsuflon placed in my belly, and I had gotten platelets and all my antibiotics. I am awake and feeling fine now. I had a bloody nose this morning and will probably get platelets tonight. I got bood yesterday at the office so my hgb is great for now. All of the pain and stuff like that was being caused from the Accutane so for now I am off of it and feel pain free. The fevers have subsided and Im doing really good right now. I hope I get out of the hospital soon because.... we had everything scheduled and set in stone to fly off to New York on Tuesday morning for all my restaging scan and hopefully to start the antibodies. We will see though!!
Im glad I get to spend time with all my hospital buddies though especially...KEVIN!! I am trying to get him to stay tonight for a while to chat when he gets off work! He is halarious!!! He has been making me laugh all day which was just what I needed!!
Anyways that was just a short update to fill everyone in on me..Thanks for stopping by! I will update tomorrow!
Love and Prayers,
Chasstiy
Saturday, March 26, 2005 2:59 PM CST
Hiya!!
I hope everyone is having a nice Easter weekend. I am. I finished up my week of chemo on Friday. It was a rather long day getting Topotecan in the morning followed by two units of blood and by afternoon I was given premeds for my platelets. I slept thru them as usual due to getting benadryl. By the time I woke up, Felice was disconnecting me. I got and ok boost and dont have to go back to the office until Tuesday which is a plus. I have been getting headaches for a while now and we are all hoping that they disappear with the blood transfusions. So far so good. But as far as getting side effects from the chemo, there hasnt really been any. I sometimes get a little nauseaus but it passes pretty quick. Im hoping that my counts wont drop much next week but we'll see because I start up Accutane again tonight. That seems to give me daily headaches and a low platelet count with numerous transfusions a week.
I got my first insuflon placed yesterday. I dont really mind getting the Leukine shots everynight but for some reason my skin is tough (rubbery like) and the needle always bounces off. It grosses me out so mom does the shot now and she doesnt like it either so the insuflon should help. I was a little nervous about getting it placed but I didnt even feel it thanks to Emla cream. I also start those shots tonight.
My lips were finally getting healed up a little form the Accutane and now I get to start it again tonight. It really drys/chaps my lips and makes the rest of my skin really dry. I also get a little nauseaus from it but with Zofran as a premed, its ok. The worst part is the headaches which is a rare side effect. The doctors never even said about it being possible but another NB patient who gets it also gets headaches so we are putting 2 and 2 together.
As of now the plans for restaging will be in New York. My mom is to start making arrangements on Monday. We should be flying out the following Monday. Possibly Friday depending on my scan schedule. Not for sure yet. Im excited to get to see all my freinds and meet one boy Dylan who has NB and I have been reading his updates for a while now. The only thing I dont like much about getting restaged up there is it seems to take soo long. I mean the scans are really long and the waiting time too, I guess because its such a big hospital with so many people. I am very impatient so its hard for me to sit in the waiting room for that long but this time I have books to take along that I have to read for school. Also, I have lots of handheld games and video games to take. I just hope that my scans are good enough to start the special 3F8 that has finally been reopened. Im a little nervous about getting my scan results but Im being very positive and in a way excited just to see what my next treatment step will be. I will update next week (hopefully after my Tuesday appt)!!
Good news- my freind Loren got her 3 month scan results back yesterday and she is still clean! YAY!
Love and Prayers,
Chassity
Thursday, March 24, 2005 8:43 PM CST
Hi Everyone,
I just wanted to write a quick update....I have been doing pretty good, not really any side effects so thats good. I am still getting headaches but they arent too bad mostly just annoying. Nothing like what my freind Alyssa must be going thru so I cant really complain. Chemo is going fine. My counts are very slowly dropping but by next week I should bottom out. Im just happy that tomorrow is Friday. Im hoping to be feeling well enough to hang out with freinds this weekend. Tomorrow's office visit will probably be very long, I will be getting chemo, blood, and more then likely platelets! My brother is now out of school for Spring Break so he will be joining us for the day. That should be interesting! LOL! I hope everyone is doing well and I will update within the next few days!
Love and Prayers,
Chassity
Tuesday, March 22, 2005 6:00 PM CST
Hello,
Sorry for the delay in updating! No news is usually good news. Friday I was supposed to see my teacher but she was sick and unable to come. It will probably be quite some time before I will get to see her again. This week I have chemo all week and the following week she is on vacation. Then I may be going to New York for restaging and possibly starting the 3F8. (remember no definates there though) The weekend was long and boring. I dont even remember what I did. haha guess it wasnt important. Yesterday I had an office appointment to start chemo and get platelets. My platelets were 21 and went to 92 after the transfusion. That is a really good boost for me. The doctors wanted to give me 3 days of Topotecan and 1 day of Cytoxan. I of course objected. I wanted 5 days of Topo and 3 days of Cytoxan. Some of the docs talked it over and agreed with me and now thats what Im getting. I know I know you must be thinking Im crazy for wanting MORE chemo. Well, here why: I know that I can toletate more so why not be safe rather then sorry and give me what I can handle. Plus, I had been getting pain here and there and it was bone pain so you know what that usually means..... after they heard what I had to say, they decided that the more days of chemo would be best and hey if the patient is asking for it why not? So I got both chemos and platelets yesterday. We got there at 10 oclock and didnt leave until 10 til 7pm! It was a very long day! I had problems in the beginning of the day though. Like I said before I was getting pain here and there. Well, all of a sudden I started getting horrible pains in my stomach (near the left side) The pains were so bad that I had to ask for morphine and they knew I meant business when the tears came. Almost immediatly after recieving morphine, the pain slowly disappeared. As usual when getting morphine I got nauseaus (dry heaved a little) then hungry. Also a little sleepy. I dont know why but every time I get it, that happens. They then gave me the chemos and premeds for platelets and I slept thru the transfusion. I also got post cytoxan hydration and had to pee lots! Because cytoxan is rough on your system and you have to pee it out ASAP, we decided to hook me up to night hydration. (moms desicion) grrr...I was up all night peeing while mom slept soundly! LOL!
Today I got to sleep in a little wee bit while mom took my brother to the orthodontist. When she came to get me to head to the office she brought it to my attention that I was super swollen! My lovely brother said hey you look pregnant! How sweet! LOL! All the night hydration caused that. So when I got to the docs, they all said guess what your getting??!! LASIX!! Yuck no fun! I had even gained weight since yesterday so I guess I wasnt peeing it all out. I was in the bathroom every 10 minutes! My platelets went to 62..they dropped 30 from yesterday. I wonder what they will be tomorrow. Thats too high to be transfused so that was about 3 hours less. I got both the chemos without any problems and then my post hydration and 4 good pees. We were out of there by 4:30 today. And with no pain. I guess that chemo really helped. I just hope that that doesnt mean there is progression of cancer. I should be getting restaged down here next week to see. I felt really really good today. My doctor was amazed from the turn around from yesterday. I hope I feel this good tomorrow also. I will try to update tomorrow or at least I wont wait as long as before. Thanks for checking on me!
Love and Prayers,
Chassity
P.S.-Please pray for my freind Alyssa as she is still in the hospital and in lots of pain. Her doctors cant figure out what is wrong but Alyssa knows something is and needs to be pain free! She also just recently lost a close freind (Katie) Pray that she is handling that ok and pray for Katies family, Im sure they need it. May Katie be in peace!
Thursday, March 17, 2005 7:43 PM CST
Hello Buddies,
Yesterday was very uneventful. Today was my doctor's appointment and it went smoothly. Surprisingly, my cocunts are slowly rising. Platelets were 19 and hemaglobin was 10.3!!! I was a little on the dehydrated side so those numbers were probably a little lower. We all decided it would be best to transfuse me with platelets and one unit of blood to prepare me for the weekend. I had felt really weak and tired yesterday so that also was a big help in the decision making. My freind (also a tech at the hospital) Kevin came to the office to hang out with me for a few hours. It was his first time being at the office so he got to experience the kids' "office life" It was really great having him there. I was really tired from being up the night before from my pain meds for a headache but I managed to stay awake and laugh the WHOLE time he was there. He knew most the other kids and we had a fun time joking and laughing with Ricky. After he left I recieved platelets and slept the rest of the stay. Ive just really been enjoying my time while Im feeling well and not sick. Tomorrow I have to get up fairly early for my teacher to come at 10. We will see how that works out! I will update later this weekend or something! Best of luck to everyone!
I have a prayer request for my freind Alyssa. Yesterday was her 1 year anniversary of her headache. She has a pseudo tumor and it has caused her to have a headache nonstop for one year! And I dont mean just a little headache but a bad one. It has never even let up for a single day. She was anmitted into the hospital because this headache got to its worse to were she was vomiting because the pain was so horrible. Please pray that even if the headache doesnt disappear that it at least gets better!Thanks!
Love and Prayers,
Chassity
Tuesday, March 15, 2005 9:04 PM CST
Hello All,
Sorry for taking sooo long to update! Lets see, where to start…
*Friday~ I didn’t really do much since I had off from the office. Mom cleaned and did work in the house. FUNFUN for her! I think I may have worked on some homework or something. I don’t really remember that far back LOL!
*Saturday~ I spent the day with my dad. Cody was away at a friend’s house and mom had a lot of errands to run. She was gone most of the day so my dad and I were home together. We watched TV and chatted. I ended up spending a lot of time online doing research and catching up on all my friends’ websites.
*Sunday~ Everyone was home all day. My dad took me to the store to spend a gift card money. I got a handheld word game for my mom and a computer game for me. Also a TV activity game thingy. I thought it would be good for us while we were at the office. Then I got my brother stuff for his pellet gun. Well, my dad did that because I don’t know what to get for it..LOL! Also, my sister and nephew came over for the night. I had lots of fun with him. I gave my sister a break by taking care of him for the night….baby food is soooooo nasty smelling!!
*Monday~ I had a doctor’s appointment. I was expecting to get chemo and platelets. Well, that changed! My counts had dropped. My hemoglobin went down to 8.8!!! It hasn’t been low in quite a while. And because of my heart issues, I have to be transfused if Im below 10. My platelets were their usual 2. Dr.G was my doctor. Because my counts were that low, he decided against chemo for this week and to just transfuse my platelets. I wasn’t typed and crossed for blood so we weren’t sure if Id be able to get that. I was due for pentamidine so while we were waiting to see about the blood I got that and platelets. I got pentamidine first and because I get numb lips and face from it, I got benadryl as a premed so I slept. After getting that, while they were premeding me for platelets I got extremely nauseous. It was really bad but I didn’t vomit, only dry heaved a little. My nurse gave me some ativan which I usually don’t get but I was super nauseous. Sometimes kids get an upset stomach from pentamidine so we weren’t too worried. Then I got platelets with not reactions. I slept thru that thanks to benadrly and ativan. Thank God blood bank was able to get at least one unit of blood to me. Normally I get two but there just wasn’t enough time. I probably should have had to come back the next day for more blood but Dr.G is “risky” I guess and let me off the hook until Thursday which Im sure I will need everything by then. By the time we left the office, it was 6:30 so it took us an hour to get home. The schools had off on Tuesday so I decided to call my friend Jessica and see if she wanted to hang out. Of course she did so we decided Id go over there. I haven’t spent the night at anyones house since like Halloween! I got home and packed all my meds and some night clothes and mom took me over there. We had a lot of fun. We ordered food from a pizza place and got full half way thru, I guess we got too much. We spent most the night just talking and watching a little TV. We had a lot to catch up on, not that we don’t talk on the phone almost daily LOL!
*Tuesday~ I slept in until about 11. Jessica woke me up then, and we ate the rest of our food from the night before while watching…Jerry Springer…LOL…. I really enjoyed being over there and I guess being almost a normal teen except for the fact I had to flush my line, premed myself, take my chemo pills, take night meds, and do it all again in the morning. We did all the normail stuff…paint nails, talk online, and we worked on a scrapbook. We are both into making them so that was fun working on hers and mine. Then mom picked me up to go out to dinner with Margy and Mary from the office. They have been waiting to take me for my birthday but I have been either sick or neutropenic. We went to the Olive Garden (Id never been before) and it was really good! I tried my hardest to embarrass everyone because that’s just the way I am, but they just laughed at me. I even told the waiter that there was nothing good on the menu, if he could run across the street to Red Lobster and get me some seafood. He must have thought I was the craziest person ever. Mom, Mary, and Margy just told him to ignore me so I guess I didn’t embarrass them. I ate a glass of lemons though which were really good but ended up making my mouth sore. Then, Mom and I went to the mall after leaving there. I got a charm for my bracelet and a pretzel. Talk about being FULL now! I have had a long last 2 days and Im soooo ready for bed. I have had a lot of fun and still have one more day off before going back to the doctors. We are thinking if my counts are good by next week that I will do chemo then. I will try to update sometime later this week. Thanks for checking on me and sorry for writing soo much!
Love and Prayers,
Chass
Thursday, March 10, 2005 7:22 PM CST
Hiya!
I am still eating like crazy and Im really it. And the weird thing is that even though Im eating so very much, I lost a couple pounds the last few days. I guess my body just needed the food. And dont worry, I am drinking lots too. Tuesday and Wednesday I was home all day and worked on some homework. Im doing a pretty good job at catching up and Im quite proud of myself. Mom has been painting the livinng room ceiling and cleaning the walls and all that fun stuff while I do homework. We were so happy to have 2 days off from the office. Its been a long time since thats happened. My poor parents are going to go broke from all the groceries Ive been having mom pick up. I have such a wide variety of cravings from canned fruit, spaghetti, lunchable pizzas to cereal, lima beans, and chips etc.!!! But I dont care that Im eating a lot because at the doctors today, they decided I will have a round of chemo next week. Topotecan and Cytoxan. Yes, the same ones I had the last time. The Cytoxan will only be 3-4 days while the Topo will be 5 because these 2 drop my counts VERY quickly compared to the other chemos I get. My platelets were 2!!!! So yup, I got a transfusion! They bumped to 57, which for me is not too bad. Now, I just have to try to get thru the weekend without bleeding. I bet I will break my record of 2 platelets Monday. It will be 3 whole days before getting my counts checked and I havent gone that long in a few weeks so Im sure they will be super low on Monday. My WBC dropped a little so we will continue my Leukine shots for the next 2 days. I think my mom should turn my room into a pharmacy! I have 3 big clear platic night stand type of things FULL of medical supplies! And thats not counting all the refridgerated things! I am still getting the headaches but thats from the Accutane. Also I have noticed some like joint pain but we spoke with another NB kid who is on Accutane and he gets the same side effects so I feel better knowing that thats all it is. One day next week I will also be getting pentamidine. Im sure I will get platelets every other day or so too. I know this update is kinda scattered and very unorganized but I am eating and typing at the same time LOL! I have been feeling really good lately. Lots of energy, well for me at least. Im still weak like I get tired of being up for too long but for me I am doing good. I attempt to go shoping with mom but end up going to the car until shes done. HEY! At least I try. I will update a little later!
Thoughts and Prayers,
Chassity
Monday, March 7, 2005 5:29 PM CST
Good Afternoon!!
The weekend went well. I ate a lot. I had to stay home because of being neutropenic. I did some homework here and there because I am really VERY far behind and need to make it all up. I just kind of took a break for the last 2 months and I will be paying for it now. It was really hard to do the work becacuse I had a bad case of chemo brain and just couldnt concentrate on anything. Plus I was in and out of the hospital and offiec so much. Not much really happened over the weekend though. I was online a lot trying to find other kids with NB. I was successfull in finding a bunch of kids but got dicouraged and stopped looking when I was reading that almost all of them earned their wings. I did find a few kids who are still fighting though. And some that even get treated at Sloan!! Maybe one day I will get to meet them! Speaking of kids from Sloan, please continue for my freind Jay who got bad news but then seemed to make a complete turn around so Im not too sure where he medically is-good or bad. Just pray for the best.
Monday- Mary was my nurse today, she is one of my favorites so I was happy to have her. My platelets were 3!! I am trying to break my record of 2, my doctor thought I was insane when I told her that. I have no idea of why they are dropping like this for so long. Hey! I bet you can guess what I had to get today...PLATELETS!! LOL! My ANC is finally up!! It has been 0 for like 2 weeks now. Also my WBC came up! So I am not neutropenic anymore. So, for lunch I had fast food!! I felt great today even though I slept for 1 1/2 hours while getting platelets from the benadryl. But the best part of the day was getting to see Cedric and Angee!! They both looked great. He is finished with transplant and back home. YAY CEDDY! I havent seen them in months so it was great to see their faces. Also I got to see my little freind Matthew and he even ASKED me to play trains with him which is a total privledge! We had fun even though I mostly just watched him. Anyways, I am still on Accutane. Becacuse my counts are still pretty low, we will see how they are next week and possibly do chemo then. I think my body is just getting worn out from all the chemo. I hope this is just a one time thing that my counts stay this low for this long because I really need this chemo and dont want to always have to wait so long to get it. We'll see on Thursday when I go back though. I will bet anything that I will be getting platelets again then too. We will contine my GCSF shots until Wed. I am getting really bruised from them though. I even had a slight but constant nosebleed on the way to the office this morning. Well, I think I am going to go and eat something. I feel like Im eating soo much but really I just pick at stuff and I think I am even loosing a little weight. Speaking of food, I even went to Costco after my appointment to stock up the house with all my favorites. LOL! I think Id rather sit and talk about food then actually eat it, chemo does strange things like that plus it has messed with my tastebuds! I will update in a day or two!
Love and Prayers,
Chassity
Friday, March 4, 2005 6:46 PM CST
Hi!
Since my last update, I have been eating quite a bit. Just cant make up for all that time without food quick enough! I did wake up early this morning to vomit. (probably a side effect from the Accutane) But that didnt stop me later on when I got up for the day to eat eat eat!
My mom's car died or something so she was up extra early getting a rental car. My best freind's dad is a mechanic so we always get him to work on our vehicles so he stopped by to pick up her car. After all that unexpected drama, we were off to a late start. Good thing traffic wasnt TOO bad. then to add to everything, the doctors office was super crowded! There was hardly even anywhere to stand. I got to see a lot of freinds though. It was actually an amusing day. Lots of laughs!! Nurse Mary (aka-Sam!) was there visiting/working and it was great to see her. She was my nurse today...YAY!! I missed her soo much. She has only been gone 5 months but it seems like years! She even remembered that I am the "Premed Queen"!! After having my counts checked, we were really shocked to see my platelets down to 6!! Thats it just 6! I have no idea what Im doing with them.
Of course I ordered some lunch since it would be a longer day than what we thought. It was funny because when Mary was ready to give me benadryl, I was sitting on the floor in a freind's private room because there was nowhere to else to go. Anyways, she gave me the meds and what did I do?....lay down right there on the floor with my bright pink shoes hanging out the door. Haha the docs were making fun of me and my bright shoes. I slept for a while but eveyone (Marie) kept poking at me!! She is too funny! By the time I woke up, the platelets were almost done.
As we were leaving, I started getting a little nauseated, so I asked for some IV Zofran and that took another 10 minutes. We left just in time for Friday Rush Hour! We had to make a few stops on the way home to try and get a part for mom's car that she needs but nobody had it so I guess it will wait til Monday. Speaking of Monday- thats when my next appointment is and more than likely I will need more platelets. Im really excited because Cedric and Angee will also be there. Cedric has successfully completed his bone marrow transplant and is finally back home even though on many many restrictions. I still cant wait to see them.
My counts are still pretty low but not my hemaglobin. Im feeling really good except for the ocassional nausea but hey I cant complain cause its not that bad. Because I am still neutropenic, I will be hanging out at home for a while and continue my GCSF shots daily. My Accutane is still reduced and I am tolerating it a lot better. Unless something happens over the weekend that needs to be updated, I will update Monday evening! Have a great weekend!
Love and Prayers,
Chassity
Thursday, March 3, 2005 12:43 AM CST
Still at home!!
I have quickly adjusted to home life...you know, laying around watching TV and eating whatever I want whenever I want it. I slept in this morning but woke up to mom standing above me with all my meds. That is one thing that seems to never end no matter where I am. Then, she hooked me up to my "Vanco balls" For those of you who dont know, they are these little antibiotic balls that get connected to my tubes. It lasts about an hour or two. Then, I took Zofran as a premed for my Accutane. So far I have been able to hold down everything I have eaten. And Ive also felt good all day. So far so good. We will hope for the rest of the day to go as well.
I chatted some with a freind Alyssa who has a freind (Katie) who is not doing well and is in need of your prayers. She is still fighting but chemo has not worked for her and they think she may not have much time left with us.
Also my freind Jay has gotten some not so great news but seems to be doing physically well. Please pray that this mean a possible miracle for him.
I want to say thanks to:
Alyssa- For the mail! I love reading your letters!
Misty-For the gel pens and dolphin! I love them and was so excited to see that you sent me a letter! Im so happy that you had those magnets made...sooo many people want them! Its a great thing you did!
Thanks for checking on me!
Love and Prayers,
Chassity
Wednesday, March 2, 2005 6:30 PM CST
HOME SWEET HOME!
I am finally home! After I updated last night, I had mom run out and get me Taco Bell, which I have been wanting for months and figured I would finally be able to hold it down. Well, I was wrrong because this morning I threw it all up. Zofran didnt seem to help the nausea so they gave me Phenerghan. (A bit stronger of a med) It knocked me out for a few hours. The nurses had a hard time waking me up to take my other meds! Oh well! When I woke up to the sound of Dr. G's voice, I was excited because I knew Id be getting discharged soon! Wrong again! He informed me that my platelets dropped to 19 over night from I think 30-somthing. So, that meant a transfusion. Then, they came in and gave me benadryl as a premed. Boy am I ever tired of getting that benadryl! I found out that the reason it hasnt been making me very tired is because they were only giving me 25 instead of 50mg. They never tell me anything! LOL. But this time I did sleep on and off for a while and when I finally woke up at almost 5:00 it was time to go. I was already disconnected and mom already took all the stuff to the car. We were just in time for rush hour which wasnt too bad. We stopped at the store on the way home to get me some stuff to make spaghetti..yumm yumm..my favorite! Dr. G also reduced the amount of Accutane Im getting and we are expecting to increase it at my Friday's doctor appointment. Right now I am only getting 50mg twice a day when before I was getting a whole 250mg but once a day! WOW big difference huh? Hopefully with starting out slower I wont get so sick and all. But as of now, I am actually feeling pretty good and eating quite a bit of this and that. On good news- Since Friday, my mom has sold a total of 100 (her goal) of those neuroblastoma awareness magnets!! YAY MOM!! If anyone is interested, please let us know. Hopefully I will have a picture of them soon!
Prayer Requests:
*Jay- Who is almost 17 and has NB. He is not doing so well right now. His link is above under NB Freinds.
*A freind who is also my age but with a different cancer who is also not doing so well and needs prayers.
*Ryan- Who is still at Duke for his transplant.
Thanks for checking on me!
Love and Prayers,
Chassity
Tuesday, March 1, 2005 4:43 PM CST
Hi!
Today was an ok day. But when I woke up, I was hooked up to all this stuff like the pulse ox thing and leads. My nurse (Chelse) said that in the night my heart rate was really low so they did it as a precaution. And when she said that I had remembered sometime in the night there was a bunch of people in my room and someone woke me up asking me if I felt dizzy and I said "Nooooo????....Im just really tired." and then I guess I went back to sleep. LOL! It was weird. It was around 8ish when I woke up which is really early for me but then Chelse gave me my benadryl as a premed for Vanco. Surprisingly, it didnt even make me drousy the slightest bit. But I guess thats because I have been getting it at least twice a day for the last week or so. My body is just used to it now. But, then I got a really really bad headache. I thought Id fall asleep from the benadrly so I told Chelse I didnt want anything for it. Before she left the room it was getting worse and worse so I said Id have one percocet and hopefully between that and the benadryl Id fall asleep and would wake up without it. I really dont like taking meds especially pills unless I absolutely need them. About 15 minutes later I was still wide awake and couldnt take the headache so I called down and asked Chelse for the other percocet. They on the other hand make me sleepy so I did eventually fall asleep and woke up feeling so much better. It was 10:30 when I woke up by the phone ringing off the hook. I was just my brother though. I then stayed awake because at 11 I wanted to watch the Ellen Degeneres Show because a freind from the office (David Dingman-Grover) was to be on it plus Ellen and her dancing is just hilarious! It turned out to be a good show and Im happy that David got nice birthday gifts and is now cancer free. Its very encouraging to see miracles happen to someone you know well.
I layed around for a while but as soon as I found out I could disconnect myself from the leads, I went for a walk in the hall. It was the first time I was out of my room since Ive been here since I had the fevers and all. Speaking of fevers, I havent had any fevers since Sunday. I had like 99.somethings but thats not really a fever. They put me back on Accutane today but a lower dose. If I tolerate it well then they will increase it some. For some odd reason, my acid-reflux started bothering me earlier. I have been waiting for pharmacy to bring up my pepcid for a while now. There are problems with the hospital computers so its going to take them longer then usual. I havent had anything to eat yet today...Im just not really hungry. I dont think the Accutane would start working on me that quick but I dont know because I got like this last week when I was on it and then totally recovered the day I stopped it. Most kids dont get so many side effects from it the way I did. Hopefully this time will be better!
Kelly from the office stopped my to visit me and watched the Ellen Show with us this morning! Its always nice to get visiters...Thanks Kelly! Also, my buddy Kevin (a tech from here) called and we talked for a long time earlier. He was off sick today. We had each other cracking up for almost an hour!! He is soo funny. So I guess over all it wasnt a bad day at all. We are hoping to get out maybe tomorrow or Thursday but right now I am on too many IV antibiotics for at home. That means I will probably have an office appoinntment on Friday, possibly getting platelets. I am still waiting to see the doctor and to get my counts for the day. I will update tomorrow and let you know whats going on!
Please keep Chris' family in your prayers!
Love and Prayers,
Chassity
Monday, February 28, 2005 7:20 PM CST
Hi Everybody!
You know the boy Chris I have been asking you to pray for? Well, I found out this morning that he had passed away at around 5:30am. Please continue to pray for his family.
My platelets dropped to 13 today so they had to transfuse me. My hemaglobin is good but my ANC is still low so Im still neutropenic. Ive had benadryl 3 times today so far!!! I am getting so used to getting it that is barely makes me sleepy at all. Ill get a little tired at first but thats it. I only took 2 small naps today compared to sleeping most of the day yesterday. I am on 3 different IV antibiotics to help my infection. Dr.H is taking me off one of them tomorrow though because my results of my CT of the sinuses came back good. They showed that I have had a sinus infection but there was nothing brewing at this time.
I have actually been feeling pretty good today. Ive been eating on and off thruout the day, probably just because Im so bored here. I cant leave the room because Ive had a fever in the last 24 hours. They told me tonight that I can go out with a mask on as long as my fever has been below 101 for 24 hours while we thought it had to be below 100.5 so, Ive been locked up in my room for nothing! Oh well! It wasnt too bad because some of the nurses would stay and visit with me for a while. Also the Child Life people who I really like came to visit for a short while. Some of them have moved to different parts of the hospital but still came to visit me after they were off so that was nice of them.
They are starting me back on Accutane again tomorrow, but a lower dose. And I am supposed to have another round of chemo next week but that looks like it wont be happening with my counts being low still. Maybe the next week. I just hope the Accutane doesnt make me feel so bad again. But at least I will be in the best place you can be if you feel bad...a hospital. Well, actually I would rather be at home in my own bed but if I was at home I would have to travel to the office everyday. Dr. H said the earliest I will get out will be Wednesday depending on the fevers. Lets hope they stay gone but I usually spike one in the middle of the night. We'll see!
If anything else happens, I will update tomorrow! Thanks for checking on me and please sign the guestbook if you get a chance!
Love and Prayers,
Chassity
Sunday, February 27, 2005 2:02 PM CST
Hello!
Where to start?! I was feeling really good on Saturday morning and was ready to just spend the weekend relaxing and eating! While mom was out picking up some stuff from the grocery store that I had requested, one of my doctors called from the hospital. I wasnt able to make it to the phone in time but got her message. I had to have cultures drawn earlier this week because of a slight fever and they are now growing bacteria. I knew right then that I was going to have to be admitted! No fun! I waited for mom to get home and call her back and I was right, she wanted me in the hospital within 2 hours. I ate some lunch and packed and then mom and I headed out. Now, we are thinking its only going to be a weekend thing but not for sure. Since Ive been here, everything is just going wrong. They hooked me up to a binch of antibiotics. I react to just about everything so that means benadryl everytime as a premed. Because of that, I have been sleeping a lot. I was happy to get to visit with some of the nurses but now I have to stay in my room because of the fever thing. Everytime I spike a fever, they have to draw new cultures, not sure why!? I had to get a chest XRay to rule out pnemonia. It came back good! Last night I reacted to Vancomycin and got red mans, then my lips swelled a little along with my nose that made me all stuffed up. I was cold all night and then Id sweat the fever out for a while before it spiked again. I got a bad headache sometime in the night which they gave me some pain meds for twice. The doc wants me to have a CT of my sinuses because it sounds like thats what the headache is from. Hurting behind my eyes and cheeks. My tech or nurse or whoever is responsible for writing down my intake and output didnt last night so as far as the doctor knows, I havent peed all night which I was up quite a bit. And somehow I gained weight since yesterday so they gave me lasix....then I was really peeing every 15 minutes. That was very annoying considering I had just got another dose of benadryl. My counts are still low and some other things like my sodium and magnesium are low too. I am getting so much meds I cant even keep track and normally I know exactly when Im getting what. I felt just fine so I dont know where this came from. I still actually feel pretty good. For now Im just trying to get rid of the headache and hope the infection ends soon! I will try to update tomorrow with more info.
Please continue to pray for Chris who is still hanging in there!
Love and Prayers,
Chassity
Friday, February 25, 2005 6:29 PM CST
Hi Everyone!
Thank you to everyone who signed my guestbook since yesterday! I was sooo happy to see that my freind Zach signed! Thanks buddy! Today was a much much better day. Since the Accutane was stopped I have totally turned around so I believe I was feeling so bad because of it. I went to the doctor's office thinking it would be a short visit but turned into a very long visit. We didnt get home until 7pm! I ended up needing platelets again. I cant believe how quick they keep dropping. I dont know what Im doing with them! I also needed 2 units of blood. The cosidered giving me 2 units of platelets but we just didnt have time for that. I had a pretty good day overall. Not much pain. I slight headache that Tylenol fixed and I started getting shoulder pain again. We are a little concerned about that considering that it where the majority of my cancer is. It wasnt bad enough for any pain meds so Im not too worried yet. We are hoping I just slept on it wrong. We did have a little scare today though. We were sitting in my room visiting with some freinds when I started choking out of no where. Then I couldnt breathe. I was a little scared. They rushed my nurses and doctor in there to listen to my lungs and check me out. My oxigen was fine and all the rest of my vitals were too. They said my lungs sounded ok except for a little crackle probably due to my cold/cough. They gave me a brething treatment...like an inhailer thingy. Nobody could figure out what it was from. It was weird but Im all better now. What was really weird was that the kid in the next room to me (who Im freinds with) had the same exact thing happen to him a little while later. He turned out to be just fine too. And we both went right to sleep afterwards..hmmm strange! I still have my appetite and have been thirsty all day. I have been drinking all day too. I guess I am trying to make up for all the time I missed. Im still on hydration at night but may stop since I am drinking good. Its up to me. Anyways, I hope the weekend continues to go smoothly for me! Thanks again for checking on me!
Please continue to pray for Chris who is still hanging in there!
Also pray for a freind of mine (about my age) who was given not so good news today and is in very much pain. Im not sure if they want his name on here but God will know who you are talking about, He knows all!
Love and Prayers,
Chassity
PS- Mary, If you read this...HAPPY HAPPY BIRTHDAY!!!
Thursday, February 24, 2005 6:48 PM CST
Hello All,
Today has been a very long and stressful day! This is how it went:
I woke up with a very sore mouth (not mucositis but possibly from the Accutane)a bad headache and just achy all over. But I was happy to look outside and see that it had snowed! We then headed to the doctor's office. I went straight to a room when I got there to lay down. My nurse Kelly drew my labs. My platelets were only 6 so I definatly needed to be transfused. The blood bank was once again low on platelets and wouldnt have any until after 1pm. We then found out that my IVIGG was not there and they didnt know when it would be delivered. The doctor came in to examine me and let me know because of all that, I would have to be admitted. I was very upset because I knew that if I got admitted, I could end up being there for days! Grrrr! I was really upset and that didnt help my headache at all which made me cry. I was just not having a good day. Besides the headache and sore mouth, I still have a bad cold, diarrhea, sore throat, and achy body. Because I was in pain and pain pills make me nauseous, my doctor gave me some morphine, which can make me very frusterated and moody. After all that, we were just "hanging out" until my admitting orders were wrote. Out of no where, my IVIGG shows up! YAY! They still wanted to admit me for platelets but Kelly told them she would stay late to give them to me so it was settled...NO hospital! I was then called to do my vitals. My temp was 100.1!!! And if it hits 100.5 you have to be admitted. I then started crying again. I bet you get the point I really didnt want to go in. But, after getting Tylenol as a premed for IVIGG, the fever lowered for a while. I ended up having to get benadryl twice plus all the other premeds I get for the transfusions. I also had to have cultures drawn for the low grade fever. They also gave me an antibiotic just in case. Since I have been feeling so bad the last week or so, she told me to stop the Accutane until I feel better and then we will start with a lower dose and work my way back up. Amazingly I started getting hungry. I think becuase I had had no Accutane so that made me happy. I munched on and off thruought the day. My fever started to go back up as I was about to leave so I was ordered to come back tomorrow just for a count check. They type and crossed me just in case I need blood tomorrow. I have had morphine 3 times today and I am now very moody and cant handle lots of noises. So basically I just want to be left alone, thats the only thing I hate about morphine. But I cant help how it makes me feel. My headache is gone for the time being but the mouth still hurts. I am still doing hydration at night and they now added Magnesium Oxide which I hate to take oral. Today was just a very long rough day and Im glad its pretty much over! I will update tomorrow after my appointment!
Please continue to pray for Chris!
Thanks for checking on me!
Love and Prayers,
Chassity
Wednesday, February 23, 2005 2:12 PM CST
Hello!
Today was a very short day at the office! I ended up getting nothing. Not because I needed nothing but because what I did need wasnt available. The insureance is finally having the IVIGG delivered tomorrow. My platelets were 20 but the blood bank only had one bag left and there were other kids who had a lower count so they got it. I will be back there tomorrow for some platelets and the IVIGG so it will be a pretty long day.
I am still not feeling too good. I still have that cold which is dragging me down. Plus my body just isnt healing from all this chemo Ive been getting. My counts are still all zeroed out. Everything is low except for my hemaglobin-thanks to the transfusion Monday. I have also been getting diarrhea very bad from my body just not being able to recover. Not to mention the throwing up and nausea. With all that said, Dr. Weil reduced the amount of Accutane I am currently getting in hopes of less diarrhea and vomiting. I am still on all night hydration because of my lack of appetite (not thirsty) and the vomiting and diarrhea.
I have been trying to work on some homework. I have to read The Adventures of Huckleberry Finn and its hard to read that book so I had mom get me it on tape. Its really helping because I was getting headaches and I cant read with a headache. My "chemo brain" is starting to get better. I have been having a problem remembering things and concentration but I can tell that it is slowly coming back...which makes me happy!!
Please continue to pray for Chris and his family!
Also for Ryan who is still in transplant and will be for the next few months!
Thanks for checking on me and please sign the Guestbook!
Love and Prayers,
Chassity
Tuesday, February 22, 2005 3:56 PM CST
Hello!
Today we had no doctors appointments. Since Im still neutropenic, I couldnt go anywhere so I stayed home. I mostly just layed around and wathced TV or was online. I have just been really tired lately. Hopefully when my counts come back up I will start feeling more energetic. I still have a cold but it was a little better today. I really wish I would get my appetite back. Its really hard to eat before taking my Accutane twice a day when Im just not hungry. I go back to the doctors office tomorrow for counts check and hopefully IVIGG and whatever else I may need. Im hoping that I wont need platelets or blood until Friday. We'll see.
Dont forget about those Neuroblastoma Awareness magnets I told you about. You can visit Trey's Page for more information about it. They are awesome! His mom Misty had them made shortly after Trey went to Heaven. If you want to buy one let me or Misty know! They are only $2.50 plus shipping. I will try to get a picture of them on my site as soon as I can!
Please continue to pray for Chris whos days are limited here on earth. Also pray for his family to stay strong for him.
Thanks for checking on me and if you get a chance...Sign the Guestbook! I love reading what everyone has to say!
Love and Prayers,
Chassity
Monday, February 21, 2005 8:15 PM CST
Hi Everyone!
Today was a super long day at the doctor's office! I was the last patient out of there. We actually walked out with the nurses. It started out an early day! We left at about 7:30 because my mom insisted there would be traffic. I told her there wouldnt be because its a holiday but noooooo......she didnt believe me. I was right though, there was no traffic so I was the first one there. My mom started this thing where she buys food for the kitchen at our office and this was the first time shed done it. But we had all this food to take up. My dad and brother came along and they helped carry it up. The food is there for patients and their families who have long days (usually unexpected) and dont or for some reason cant order out. It was really needed. It gets a little expensive to order out all the time. It was the first time my dad had been to the office. My brother had been a few times. It didnt last long them being there. They did stay about 3 hours though. My brother started getting mouthy so that was a hint it was time to send them off! It was fun having my dad there though. My counts had dropped like I predidcted. WBC-0.1 Hgb-9.3 Platelets-29 I had a slight nose bleed on Sunday so they decided it would be best to get blood and platelets. Mary was my nurse. Since I was there so early and the blood runs arent until a little later...being the good nurse she is, she went and got my blood herself. She knew it would be a long day for her too...smart lady! LOL! We were able to start it pretty quickly. I havent been feeling well all weekend. Mom says my body just hasnt had time to heal from all the chemos Ive been getting plus the C-Dif. I am just feeling really lazy and tired. I am feeling a little better now though, thanks to the 2 units of blood. I actually got out of bed and moved to the couch and Im eating a little. I cant wait for my appetite to come back. Its hard right now because I have to force myself to eat in order to take my Accutane and Im just not in the mood to eat. My belly being in pain and nauseous every now and then doesnt help. I have another cold with an annoying cough. So, I either take Tylenol Cold or pain meds since they both have tylenol I cant take both. I usually go for the cold medicine, the pain isnt bad enough that I cant stand it. When Im in pain I just think of all the little kids out there who go thru the same thing or more and they are soo little and its just not fair, nobody deserves it but Im bigger and can handle it and they are just little...so sad! I started getting a high temp but not quite a fever while I was getting my blood products. Luckily as I was leaving it went down to normal...Thank God! Well, Im going to go take my Accutane and hope that I can make it thru the night without getting sick!
Prayer Requests:
* Chris - He is really not doing well, they say he only has a couple days left, please pray that his last days are as comfortable as possible, and pray for his family. He is such a strong boy.
* Ryan - Hes getting his transplant. GROW CELLS GROW!!
Love and Prayers,
Chassity
Sunday, February 20, 2005 9:47 AM CST
Hi!
Saturday started off pretty good. My mom had to go get my nephew Ricky. His mommy had to work so we attempted to watch him for the day. I woke up at around 9:30 and was a little sleepy still from taking pain medicine earlier for belly pains. I was able to stay awake though. Ricky got here and I was happy to play with him while mom cleaned. Normally I just adore babies but I am still feeling the effects of the chemo so I got bored with him quickly. My brother had a freind over who was visiting from out of town. We all loaded up in the car to take him and Cody (my brother) over to his place. On the way, I got really bad pains in my belly and started to get really nauseous. And I started feeling really really weak like I was going to pass out. It was all weird. I just layed back and hoped for it to pass. It did eventually. But the belly pains stayed with me all day and continue as I type. So, I researched.....I found that Topotecan causes abdominal pain so Im assuming thats what it is from. My counts have probably steadily dropped since Friday so Im sure my hemaglobin is a little low...which can result in a lazy me! I have just been laying around in bed, and wathcing TV or hanging out online. Im lucky to have a great family that jumps at my every need...yes even my stuborn 14 year old brother. I will start my Accutane today. My dad actually just made me some eggs and toast (which I ate very little due to low appetite not bad cooking..LOL) because you are supposed to eat before taking the pills. I guess I will have to get myself into a routine of lots of lotion and chapstick because Accutane causes dry skin and cracked lips. Hopefully it wont be too bad. And those are the main side effects so it should be fairly easy treatment. My next appointment is tomorrow at 8:30. We scheduled it early because we have been warned it could be a LONG day possibly needing blood and platelets. We'll see though!
Please pray for my buddy Ryan while hes away at Duke.
Also Cedric while they will be returning to Duke for an appt tomorrow.
Also pray for Chris whose family is searching for more treatment options for him after hearing there is nothing left to do.
I want to let all those Neuroblastoma families out there know about these magnetic ribbons for your vehicle that I got my hands on. A little boy named Trey won his battle to NB and went to be with God not too long ago. His mom Misty had these NB awareness ribbons made and is now selling them. They are purple with a yellow outline and in yellow it says Children's Cancer Awareness to Neuroblastoma. I think they are the coolest things and I will soon have a picture of them. They are only $2.50 plus shipping which varries depending on how many you order. The money just covers the cost of the magnet..the whole poinnt is AWARENESS!!
All my Love and Prayers,
Chassity
Friday, February 18, 2005 5:19 PM CST
Hello!
Sorry for not updating in a while. So I will try my best to fill you in.
Wednesday:
Mary was my nurse. We started out with great urine samples so chemo started as soon as I was done being examined which often takes up to an hour. It was quite uneventfull. I got my chemos and then stayed a few hours to give the nurses my post Cytoxin pee. I have to give them 3 samples and get hydration. Not a big deal but to me....it was. I was just so tired. Not so much sleepy but exhuasted. We finally finished up at about 4- just in time for rush hour. I slept all the way home and then went straight to bed. I only woke up long enough to eat a bowl of my favorite food-spaghetti! Then it was right back to bed for me. Mom hooks my up to hydration at night so that my bladder wont get affected my the chemo. That means frequent trips to the bathroom thu the night. Not too much fun for me.
Thursday:
Kelly was my nurse---MY BUDDY!!
Hydration last night was a differnt brand or something so it had to was less. No not less peeing. My urine didnt start out as good so I got normal saline in one line and chemo in the other. My counts werent too bad considering the chemo Im getting. Though, my platelets dropped a tap but hemaglobin was okay. I got my chemo without problems and had a small lunch. I started up my cravings for pretzels again...an old tradition I started in the hospital back when I was getting heavier chemos. Mom would make numerous trips a day to the vending machine to get me bags and bags of pretzels. I think its the salt that I wanted. Well, I was slowly getting more and more nauseous but by the time I served my 3 pees, I needed some meds. I was able to get some phenergan out of the docs. Thanks to it, I went straight to sleep as soon as I got in the car. And straight to my bed when I got home and I slept until morning. Well, of course Mom woke me to take my night meds but that only took a minute.
Friday (Today):
My nurse was Mary!
Surprisingly my counts dropped dramaticly! I am very neutropenic which I havent been in soo long! Dr G decided against giving me Cytoxin today because my counts were so so low. So I just got Topotecan and they gave me a unit of platelets. I will start up Leukine tonight. And Sunday I will start my first dose of Accutane. But today I had quite an appetite..I made mom order me spaghetti for lunch plus I put away some pretzels. I was able to fight the benadryl and stay awake besides a little 30 minute nap. I was happy to see lots of freinds today at the office that I havent seen in a while. I dont get nauseous with just Topo so today was a pretty good day. If I mask up, on Sunday I get to go visit my sister and nephew so that will be fun.....as long as they arent sick or havent been. I was looking forward to going shopping or doing something this weekend but it looks like I will be staying in. Oh well!
I want to say YAY CEDRIC!!! He is home for the weekend from Duke! Congrates buddy!
And please continue to pray for Ryan who had his transplant Wednesday and is starting to get side affects from it.
Well, now that I have just wrote a short book on the last 3 days I will let everyone get back to their life.
Love and Prayers,
Chassity
Tuesday, February 15, 2005 5:25 PM CST
Hi!
The first thing I had to do today when I woke up was DRINK DRINK DRINK!! I have been having nothing but good urine when they test it at the office so thats great news. Today was a pretty long day. First I started with getting my blood counts drawn which my hemaglobin is dropping at 10.9- anything under 10 and they transfuse me so I got a blood band. We are thinking by Thursday I will need 2 units of red blood cells which will mean a long day. Also I will probably need platelets Thursday or Friday. We thought I was going to have to be admitted Friday for the day to get IVIGG which is to help my immune system because the insurance didnt want to cover it at the office. Well, with the help of Rachelle, she got them to cover it. So, as soon as they can get it at the office I will get it, hopefully this week. I am starting to get a little bit of a scrachy throat and cough so that just means I need it all the sooner. They have decided to hook me up to hydration again tonight just to be on the safe side. They are also considering giving me MESNA tomorrow after chemo wich protects the bladder from these harsh chemos. It will mean a longer day but thats ok. I had Subway for lunch that gave me yucky heartburn!! So now Im taking it easy with dinner. Mom and Nurse Mary kept making me DRINK and PEE all day long...grrr so annoying when your tired. They premeded me with benadryl and tylenol for the IVIGG because we thought I was set to go but then found out the insurance wouldnt cover it so I got them for nothing...I was mad! I got to see Ashleigh and Penny and Heather today wich was nice. Heather brought us Subway for lunch...it was yummy even though I got heartburn. Also we saw Matthew today...he looked so good and his hair is thick again!! Ash's too with pig tails! Well, I will update tomorrow to let you know how things are going. Thanks for checking on me!
Prayer Requests:
*Ryan- The big Transplant day is tomorrow....GROW CELLS GROW!! You will do great buddy, Im praying for you~!
*Ceddy- He should be coming home very soon!
*Joshua's Family- He won his battle to Neuroblastoma yesterday and went to be with the angels.
*Stanton's Family- He won his battle also to Neuroblastoma the other day (one day before his birthday) to with with the angels in heaven.
*David- He won his battle to cancer and is cancer free!! Go David! "Frank is Dead"!!!!
Love and Prayers,
Chassity
Monday, February 14, 2005 8:47 PM CST
Hi! Happy Valentine's Day!!
I had a 10:00 appointment this moring that we were late to. Mom dropped me off while she went to pick up my chemo at the pharmacy that she had been reminded (by me) after we were already late as it was. Oh well though. Caroline was my nurse....poor Caroline! I ended up getting 2 chemos (Topotecan and Cytoxin), Pentamidine, and Platelets....I react to the last two things but luckily today I didnt. We got home at around 7ish. It was a pretty long day. Mom and Caroline drove me absolutly crazy today. Caroline was waking me up every hour or so to pee in a cup which is hard to do fresh out of a benadryl sleep.LOL And then mom was waking me up in between that to drink water which for some reason (probably mind over matter) makes my belly feel funny and adding the chemo, I was nauseus but the Doc said to just try and ride it out for a while but finally gave in and gave me some Ativan.
It was sooo nice that Margy was back!! And we chatted with another teen- Danielle and her mom and had some laughs. We akso talked to Lisa for a while...okay so I listened to her and mom talk. They are so interesting. I tried to start on some homework but my mind is messed up from I guess chemo and its hard for me to understand things and put 2 and 2 together....and I forget EVERYTHING...mom told Dr P that this happened before a few times and I said "Well, I dont remember looseing my mind!" haha they both laughed at me. Its weird though because I feel so stupid not being able to do the things I once did easily like homework.....mom said it always wears off though so thats a good thing. But anyways for the next few days if you dont understand what Im writing...bare with me sorry!
My appointment for tomorrow is at 10am again. Hopefully we will get out of here on time. I woke up this morning to pee because of the hydratioin at 5:30 and stayed awake...I simply couldnt sleep. I hung out with my brother until he left for school but by then it was time for me to start getting ready to leave. He made me some tea.....OMG it was soooo strong and thats probably why I was really hyper today until I got benadryl.
We were going to go to my sisters house to see her and Ricky (my nephew) but we got out sooo late that we didnt have time. We were also going to go grocery shopping but that didnt happen either. I have been wantiing Mac and Cheese for some reason. I am allowed to eat anything except greasy and fried foods but mom doesnt cook that stuff anyways......its my dad who had pizza cooked when we got home..hahaha. I ate eggs instead. And so far its been fine on my stomach, Im still a little nauseus from chemo but not too bad. Well, sorry for writing a noval but Ill update tomorrow evening!
Prayer Request-
*Please pray for Joshua and his family...he won his battle to Neuroblastoma this morning on Valentine's Day....God bless his soul. Please pray for his family to have the strength to make it thru this tragedy.
*Also keep praying for Cedric and Ryan away at Duke. Their links are above under the Freinds category!
All My Love and Prayers,
Chassity
Friday, February 11, 2005 8:28 PM CST
Hi!
Sorry for not updating yesterday. I dont even know why I didnt...nothing exciting happened! I had my doctors appointment Thursday and got platelets...that was fun! As usual, I got benadryl so I slept. I got ONE WHOLE HIVE! Then I ended up having to stay for like 30 minutes to make sure I didnt get anymore and luckily I didnt. Then last night I got a horrible headache...not sure what from but ended up taking percocet that gave me the weirdest dreams after falling asleep at 4am! But I was up every hour to pee since I was hooked up to hydration! I am still on the BRAT diet that my dad calls "RAT" because we are out of bananas..LOL! I was allowed to eat a plain turkey sub from subway today to TRY and see how my belly handled it and it sat there all day...I felt nauseous from it. I put myself back on the strict diet...doctor knows best! I guess I just had to learn for myself. Im feeling better now though, I just feel really really full!
Now I had another appointment today to make sure I would make it thru the weekend without platelets and they were 50 so I didnt get transfused. The next step of treatment will be chemo next week at the office. Topotecan and Cytoxin. Ive had them both before and Cytoxin damaged my heart once so it will be low dose next week. I dont think the side effects were too bad...maybe slight mouth sores and low counts but thats not too bad. I still have to be on hydration at night and that will continue thru next week. I will probably get platelets on Monday and Pantamidine, and some other white blood or something I forget what its called.
I just want to thank everyone again who sent me cards or gifts....they were still coming in today! I went shopping with the money and got pens and clothes and stuff. I had a good day as far as feeling strong and good. Well, I feel like Im rambleing on now..........
Love and Prayers,
Chassity
Wednesday, February 9, 2005 4:22 PM CST
Hello Everyone!
So far I have had a good Birthday! I ended up sleeping most of the day because we didnt get home until 1 this morning. It felt soooo good to sleep in my own bed.
I have been getting birthday calls all day long..Thanks everyone! Also thank you all for signing my guest book. Its no fun being on the BRAT Diet...all I want to do is eat! I think its because I know that I cant. I settled for some chicken and rice soup though.
I got my birthday gift from my mom and I LOVE IT!! I got the same thing that my sister got for her 16th. Diamond Earrings. Mom wants our first diamonds to be special and not form a "clown"....haha I think she means some guy! They are beautiful though. I forgot all about my sis getting them when she turned 16 so it was a total surprise. My brother woke me up and said Happy Bday which was a gift of its own..hahaha. Now from my dad.....he said he would get me a kitten. I have known thats what Im getting for a while but we are just waiting for the right time to actually get it, you know when Im not in NY a lot so that I can enjoy it while its small. I already have a cat but I would like another...Im sooo spoiled. My dad and I will probably go out in the next few weekends and get it...Im so excited!
Dr. Weil called this morning to say Happy Birthday which was sooo sweet. She also called with some scan results! My bone marrow aspiration came back clean! My bone scan and pet scan came back looking better so its been a really really good day. I am feeling a lot better too. I think just beinng at home has really helped. The diarrhea is getting a lot better too! Im sure everyone is glad to hear that! haha Hopefully tomorrow I will be able to eat a little more then bananas,rice,applesause,and toast. We'll see! I will update after my appointment tomorrow!
Thanks for checking on me!
Love and Prayers,
Chassity
Tuesday, February 8, 2005 7:03 PM CST
Hello!
I just got back to my room (yes hospital room) from my PET Scan. It was sooooo long! It took like 3 hours all together! And guess what?! I still have to get blood transfusions tonight. I AM going home TONIGHT though. Mom promised no matter how late. I want to wake up in my own bed this year...last year I was in here so....
Katie- OMG!! I died laughing at the peom.....so did Mom and Chelse! You are too funny!
I am just sitting here waiting for some toast to come up because that is about all I can eat on the BRAT Diet...and I havent had anything all day so I am hungary for anything. Mom said she will make me an applesauce cake tomorrow with bananas on top..she is too silly. The nurses made me banners and cards for tomorrow...they are soo sweet.
I want to say a special HAPPY BIRTHDAY TO ANTHONY!!!! Today was his BDAY!!! GO BUDDY!!
THANKS TO EVERYONE FOR SIGNING AND WISHING ME THE BEST FOR MY 16TH YEAR!! I LOVE YOU ALL!
Keep up the good work Ceddy!
I have an appointment on Thursday at the office for counts and whatever else I need but I will update tomorrow to let you know how my day went. I guess I'll just sit and wait for my BDAY Blood......Good night!
All My Love and Prayers,
Chassity
Monday, February 7, 2005 8:46 PM CST
Hello Everyone!
Today has been a better day for me. Dr. G said I could slowly move to solids...easy foods though, that means back to the "BRAT Diet". Its better then nothing though. I am coming off the TPN/Lipids tomorrow-6 hours before my PET Scan. I have actually been sooo hungary today that all I want to do is eat but I know that wont help. I slept all morning until almost 2 and then as soon as I woke up, they brought it Benadryl for me platelets. I was able to fight thru it but it was hard to stay awake. I also got really nausueas so I got phenerghan and that helped, it also make me super tired.
Mom and I have just been hanging out and watching TV or reading or something. My PET Scan is set for 5PM tomorrow! I am hopeing they will let me go home afterwards but I dont really know. It takes like 3 hours for that scan to get done so it will be late and they might just want to keep me. I really want to be home for my birthday but right now Id be happy if I could just eat. After I found out I was allowed to have solids, I ordered a grilled cheese but the stupid grill was broken so I have to wait until tomorrow I guess. Oh well!
I am so happy that Ceddy is eating and drinking and will be home in 2 WEEKS!! Go CEDDY! I knew he could do it!
Please keep all my freinds in your prayers! Wish for me to be home on my 16th Birthday, and to be eating! 2 more days!
All my Love and Prayers,
Chassity
Sunday, February 6, 2005 11:26 AM CST
Hello!
Yes! An update from the one and only.......ME! I am still miserably in the hospital. The C-Diff is getting better, well at least Im not running to the bathroom every 10 minutes anymore, but I cant eat to I am soooo hungary. I told Dr. Greenberg that for some reason I could just go for a Sloppy Joe...he said it sounded good to him, LOL! He is too funny. He did give in and tell me I could munch on crackers and some soup just mostly the broth though...hey its better then nothing. Today is probably the first day that Ive been awake in here.....I have always been so out of it. Hey sometimes its better that way. I just cant wait to get outta here....hopefully by Wed. Dr. G said hes trying to get me out for my birthday but isnt promising anything. I cant believe I will be spending 2 birthdays in a row in here!!! Its no fun. Charawn is in here trying to do vitals...GOD!!! They are so overrated! CRISIS...and they all left me. I thinnk Im going to send Mom go the store to get me some soup! I am goinng to starve! I will try to update later but besides all this, not much is happening!
Chassity Flint
5673 O'Bannon Road
The Plains VA 20198
Love and Prayers,
Chassity
Friday, February 4, 2005 12:46 AM CST
Hello,
This is Chassity's mom again. I figured I better update to let you all know how shes doing. Shes doing a little better. She was supposed to have her line put in tuesday but her platelets were only 19 so they couldn't do it. They gave her a tranfusion that night then again the next morning cause they still weren't high enough to have the surgery. So wednesday evening she finally got her central line in with only 60 platelets. But all went well and shes so happy shes not getting poked at anymore. Yesterday she had a bone scan and a ct scan. She had to drink the contrast which she hates. I managed to get some into her. We found out yesterday also that she has c-diff which is causing all the diarreah. So shes on a antibiotic for that. Today she had a bone marrow aspiration but won't find out the results till next week. Then on tuesday she'll have a PET scan. We better be out here before that. Then Wednesday February 9th is her 16th birthday. She is excited about turning the big 1-6. She wants to have a party but since shes in the hospital and not knowing when were leaving or how she'll be feeling next week, its hard to plan anything. But I'll try to make it great for her no matter what. If anyone wants to send her something heres her address:
Chassity Flint
5673 O'Bannon Rd.
The Plains, Va. 20198
She loves getting mail especially on those special occassions thats just for her.
Carrie
Tuesday, February 1, 2005 9:19 PM CST
Hello Everyone!
Its Chassity today. I have just felt so miserable the last few days. And yes I really WANTED to be admitted, I was so scared because when I get the dehydrated, I have a hard time breathing and I am very very weak. I havent had any fevers or anything so that is a great thing.
They have had t poke me so many times since Ive been here. My arms are so bruised up, I dont think there are any weins left in me. I couldnt believe how bad I felt when I got here the other day. Mom had to wheel me in in a wheelchair. I was crying and yelling because I was just so miserable and scared. The dotors and resedent and nursed assured me that Id be okay. They gave me 3 litters of fluid right away. It took me until the next morning to be able to pee, thats how dry I was. Plus, I was sooo thirsty but extremely nauseus, everything including water just came back up. I was so happy to be at the hospital so that I could be hydrated and given IV meds.
They were trying to get me Cental Line placed earlier than today but there just wasnt time for me to get in. So, I was happy when they called me down a few hours early today. The IV I had in my wrist was really sore and swollen. After they had me in the pre-op room for about 30 minutes and we were just waiting for the surgeon, a nurse came in and said they couldnt do it because my platelets were only 18!! I just started crying and mom was so mad. I was just really tired and my arms were sore and I knew that I would have to have this IV out so it just wasnt a good day for me. They should have checked my counts and given me platelets ahead of time, it was rediculous! So, I guess we will just try again tomorrow. I got the new IV and now (hours later) my hand and arm is still all swollen. I also got the platelets. I have mostly been sleeping becauase of all the IV meds for nausea and pain. I started getting the normal cramps with this last chemo today so thats another problem.
I am sipping water and eating some Icey things but on a lot of fluids. I havent eaten a thing in about a week. I am just so nauseus to think about f-o-o-d! Yuck!
Yesterday I was so happy because Kevin Lee came to visit me!! Yay! We had a funny-good time. Also, Kelly was here for a meeting and stopped in to say hi. And, my sister and nephew were here while Kevin was. We had a great time. The only thing was- they had to give me a bunch of premeds for stuff and I was really out of it. My mom, sister, and nephew mostly hing out- they went to lunch at the cafateria and I chilled with Kevin. We talked about funny things and he is a good listener when you just need to vent- Thanks Crispy Noodle- your the best! He stayed for quite a while, until I fel asleep.
Thank you everyone SOOOO much for signing my guest book and thinking and praying for me, it really means a lot! I love you all! I think your prayers are working because I am feeling a lot better in some ways but new bad side effects are starting to pop up. Right now the cramps, nausea, and diarrhea are really bad but the meds are helping some. I just cant wait to get better and get the Central Line in.
Bret is in the hospital for chemo so his mom came to chat a little while ago. It was nice to laugh with her. Lisa is my nurse...she like my favorite night nurse! Im so happy I got her. We were talking about her wedding so at least I was in a little bit of a good mood. Wow...I think I just wrote a book! Oh well, I am always praying for everyone else to be doing well!
Please keep my freinds Ryan and Cedric in your prayers while they are at Duke preparing and ending transplants!!
All My Love and Prayers,
Chassity
PS- Sorry if I spelled stuff wrong or didnt make the best of sence, I just got dilaudid! HAHAHA!
Monday's update
Just wanted to let everyone know that Chass is finally hydrated but she still feels bad. They ran several different cultures but nothing has come back yet so that is a good thing. She's been on ativan and dilaudid all day and amodium too. Shes been sleeping most of the time. Hopefully she'll get her line placed tomorrow so good bye IV's. I'll keep updating till shes able to do it herself. Until tomorrow.......
Carrie
Hello All,
I'm updating for Chassity cause she hasn't been feeling too good. And guess where she wanted to go today. You never guess so I'll just tell you......she wanted to be admitted to the hospital cause she felt so dehydrated. So thats where were at. She was admitted around 5PM today. They had to put in another periferal IV (sp?) which took several tries before finding a vein. But they finally got it and started giving her hydration. She's on her 3rd bag already and she still hasn't pee'd yet. She was really dry. She was up most of last night throwing up and running to the bathroom. She wasn't able to hold even water down. Shes been so thirsty for water and thats something she hardly ever drinks. But she was drinking it even though she thru it back up. Finally shes starting to feel better. Shes getting plenty of IV meds which she loves. And a little dilaudid for the stomach pain. Tuesday shes scheduled to get her line put back in but since shes in the hospital they are going to try to do it sooner if possible. Her poor veins can't take much more. If shes feeling better tomorrow she will update. Until then.......
Carrie
Friday, January 28, 2005 7:53 PM CST
Hello Everyone!
Today was my last day of chemo!! YAY!! I am so exhausted. I cant really eat because I am just too nauseus but I am trying to drink some. Im sippinng ice water now so that is good. Thanks you everyone for signing my guest book!- I love hearing for you all. I'd love to meet you- Zach, Nikki, Robin, and Anthony.
At the office: I got hydration by my request, chemo, and platelets, plus all the premeds and antinausea meds. I slept pretty much the whole thime. The office was sooo busy. Ann had to give me a new line beacuse mine was getting all red and it hurt to be flushed. I get my new line placed on Tuesday! A little nervous but glad that I wont have to be poked everyday, several times a day!
Please Prayer for my freinds: Ryan, Chris, Ashleigh, and Kelly! Also all the other kids who have to go thru this!
Love and Prayers,
Chassity
Friday, January 28, 2005 6:56 AM CST
Hello,
Sorry for not updating...not doing my best. Im pretty sick from all the chemo, it stinks! I had to get 2 units of blood yesterday and chemo and hydration, so we were there until almost 7pm! SO MUCH FUN! NOT! I came home and slept all night. Im not really able to hold any food down, and too nauseus to want to drink but I did wake up and drink 2 cups of water last night and Im sipping some now. I will get chemo and hydration again today and possibly platelets.
My teacher dropped of my new book yesterday afternoon. SOOOOO much work! Yuck! Well, I have to leave in about and hour so I think Im gonna lay down til then!
All my Love and Prayers,
Chassity
Sorry for the short update, I just dont feel well....Please keep all my freinds in your prayers as Im sure lots of them feel worse then me. Thanks!
Wednesday, January 26, 2005 3:34 PM CST
Hello everyone!
Yesterday:
Sorry that I didnt update yesterday. I had to get a periferal IV in my right arm. They only vein they could get after sticking me 3 times was on the inside part of my elbow. Because of the place, they had to put a board on my arm and then wrap it up so I couldnt move it. But that was only so the IV wouldnt fall out...for some reason my veins were really small yesterday. I got the chemo and then went home. I started getting nausseus but at least I finally ate. I took some meds and they helped....they especially gave me a good nights sleep. Except for constantly getting up to run to the bathroom and the whole throwing up thing. Thats the worse thing about this chemo for me. It gives me really bad stomach cramps/diarrhea and makes me vomit.
Today:
I had to get a new IV because the one from yesterday hurt and was leaking. Mary was my nurse..I like her! I wasnt feeling too hot from yesterday so... First, they hooked me up to my premeds and gave them time to kick in. Then I got hooked up to the chemo. I usually start getting a little nauseus right away and today was no different. The cramps started up and they gave me a little morphine for that. I was feeling pretty out of it then. For some reason my blood and platelets continue to drop. They are prepared to give me a blood transfusion tomorrow. My hgb was only 10.something low. They trasfuse me below 10. And actually it was probably even lower because I was dehydrated. They gave me one bag of hydration today and that helped a lot.
On other notes:
I had the stomach flu the other day for maybe 24 hours. Now, my brother, Cody has the stomach flu really bad. I feel bad for mom because now she has to run between us so Im trying to take care of my self. Hopefully Cody will get better and be back in school and to his normal annoying self tomorrow. haha! My dad is now saying his stomach is bothering him. Sounds like the whole family is going to be sick all at once. Im hoping my mom stays healthy, we need her! Thanks for being there for me MOM!!! I LOVE YOU!...I know she will read this and no Im not sucking up!! haha!
Please continue to pray for my freinds.... Ryan Cedric and any others who need it!
Thanks for signing my Guest Book and Please Continue!
All My Love and Prayers,
Chassity
Monday, January 24, 2005 7:36 PM CST
Hi!
Well, I have good news. When we got to the office this morning, we were fully prepared to be admitted. Mom was on the phone as soon as we got there with the insurance, trying to get the chemo delivered at the office. In the mean time, I got a finger poke and my counts werent too bad. My hgb and platelets were going down though. I was dehydrated so that meant i needed blood. When we were in the elamine room with Dr. Kitchen, she was about to give me my admition orders. Well, Rachelle walked in and said that she had been talking to our insurance and they had it set up that I could get the chemo there instead of the hospital. I was soooo happy!!
Then, they put an IV in my hand and hooked me up to hydration. They had to type and cross me because after they got the results of my urine they realized I was pretty dry. They wouldnt have given my blood today if I would have already had a blood band. It looks like we will just have to wait until tomorrow for that.
They hydrated me for about and hour and then started the premeds. I was actually awake the whole time. I didnt get too sick. Im just feeling a little nauseus. After we left the office, I slept the whole way home and came straight in and slept until about 7:30. Then I woke up in time to take my oral chemo. I cant eat for an hour after I take that so I am still waiting. I will update tomorrow to let you know how Im feeling.
Love and Prayers,
Chassity
Sunday, January 23, 2005 2:27 PM CST
Hi,
Just wanted to write a quick update.
My cold is almost all the way gone! YAY! But, I started getting nauseus late last night. Then I started throwing up and getting pains in my belly. I took some Ativan and Percocet and that helped me to get some sleep. I kept waking up needing to run to the bathroom. I had to take more Ativan to help my belly. I was finally able to sleep for a while and Im feeling a little better now. When I finally woke up at 1 pm I was very thirsty, probably from vomiting all morning. I've been drinking and just tired now. We are hopeing its just a 24 hour stomach flu or something like that.
I should be admitted tomorrow unless plans have changed. Hopefully the insurance can get everything worked out and Ill only have to stay in the hospital for a day or two. We'll see!
Please continue to pray for Joshua!
Love and Prayers,
Chassity
PS- Thanks for signing Mark and Parker! I loved the joke! See you soon!
Thursday, January 20, 2005 12:36 AM CST
Hey Hey Hey!
Im still waiting for the results from my SOLs...I hope I get As!! When my teacher came she gave me a list of the new classes Ill be starting for this new semester and they are: English 11, Businees Law, US History, and Creative Writing. The first 2 are 11 grade classes so thats good Im starting to get those out of the way since Im still 10th grade. But they arent supposed to be hard so that is a plus. Hopefully Mrs. Jolly will get my new books sometime early nest week and get them to me so I can start. I want to get as many credits as possible as soon as possible.
Anyways, my cold is getting better but not all the way gone yet. We got a call from the doctors office today. They called to say that our oh-so-great insurence doesnt want to cover next week's chemo at the office. Of couse they have no choice but to cover it if Im in the hospital so as of now it looks as if I will be admitted. the actual chemo infusion only takes 1 hour a day and now I get to stay in the hospital for 5 days! Grrrr....Im am really not looking forward to it. Its been so long since Ive been admitted and it just so much easier to get it at the office. Oh well. I guess there is nothing I can do about it so Ill make the best of it. Im happy that Ill get to see my nurse and tech buddies but Id much rather just visit them. Since them chemo will actually only last about an hour a day they will probably give me day passes. Hopefully I will be able to come home long enough one day to get my school books so I can start.
This is the same chemo I have been getting since Thanksgiving. Yes, the one that gives me horrible stomach problems. Hopefully I wont get as bad side effects as Ive been getting but I am totally prepared for whats coming. The side effects are just now ending from the chemo I got almost 3 weeks ago. Im praying I wont end up in the hospital again after the week. We'll see.
Anyways, on a good note... I got to see my nephew the other night. He's getting so big and cuter every day. Because of the cold, I wore my mast so he wouldnt catch it. I dont think he even noticed I had it on. Also, since Im feeling better, Mom and I are about to go shopping!! YAY!! I love to shop, what girl doesnt? I will let everyone know for sure about me gettin admitted as soon as I find out. Either way, my laptop goes with me everyhwere so I will update later!
Prayer Requests:
*Ryan is at Duke now and hopefully hes still doing well. Good luck with transplant buddy!
*Cedric who is now down to 2 days a week appointments, also at Duke for transplant. Pray that his brother gets over his cold and that Ceddy does catch it!
* Joshua who recently relapsed and is in need of prayer for gettin cured again.
Love and Prayers,
Chassity
Tuesday, January 18, 2005 4:08 PM CST
Hello!
Well not much has happened since I updated last. I mostly layed around and watched TV. This cold has been making me miserable but the doctors finally gave me a perscription today. Hopefully it will work quick! My counts were actually pretty good today. hgb-12.6 platelets-99!! Not too bad! Since I still have that cold, I had to be locked up in a room at the office but of course everyone came to visit me. My teacher came the other day to give me SOL's and whewww they arent the easiest thing Ive ever done! I hate tests! Well, not much else to say, things are going pretty well so no news is usually good news!
Love and Prayers,
Chassity
Thursday, January 13, 2005 5:09 PM CST
Hello!
Today I had my doctor's appointment. Mary was my nurse and after she gave me a finger poke, we got my counts back. They were pretty good. Hgb=11.6! But, once again I was dehydrated. She wouldnt let me leave until I drank and was able to give her a good pee. So, we were there for a while but it wasnt too bad, we got to chat some more with Marshall and sing happy birthday to Olivia, she turned 6! I also got to see my little buddy Ryan! He gets some scans tomorrow and then heads to Duke Saturday. I was so happy when I heard that. It means he can finally have his transplant. I also got to see my little pal Matthew and his mommy! He gave me high five 4 times!! Normally Im lucky if I get a hi out of him, I guess hes just too good for me haha! Please pray for him, he had a bit of a tough day with being on steriods, it was tough for Katie too! My cold is still driving me crazy but the cough meds are helping.
Tomorrow my teacher is coming to give me my Standard of Learning Tests!! Fun Fun!! I hate tests! Hopefully I will do well. Then Next Wed she is giving me new books for the new semester!
My next appointment isnt until Tuesday. But, some time next week I will be getting another central line placed, probably a double lumen, by my request. I will update when I know the exact date!
Love and Prayers,
Chassity
Tuesday, January 11, 2005 7:35 PM CST
Hello!
Sorry for not updating in a few days! I just layed around ALL weekend and watched TV. But hey it was actually pretty fun and I got to see a lot of good movies too! I just felt really tired and weak.
But luckily today I had my doctor's appointment. I was sure I would need a blood transfusion but after Mary poked at my finger forever we got my counts back. My hgb was 12.2!! I was amazed. By then Dr. P was seeing me and I was feeling really bad. I thought I was about to pass out. She said I didnt look so good either with dry lips and ill looking eyes. So, they made me pee in a cup. I bet you can guess where this is going...yup I was very DEHYDRATED!! She examined me real quick and then got Ann to put an IV in for hydration. Then I spent the whole day there getting fluids well until my levels were below 10.5. Then they drew laps again and my hgb was 10.0 So we estimated it was really about 11.something. But I had felt a lot better after the fluids.
I have had a slight cough the last few days but we thought it was just form dry heaving so much that it irritated my throat. Well, it has got so much worse this evening. I feel miserable. Now I have an oh-so-lovely runny nose too. I keep checking to make sure I get no fevers! I finally took some cold medicine and Im hoping I will get some sleep tonight.
Now that I have just wrote a noval on how I feel, I will let everyone get back to what they were doing!
All My Love and Prayers,
Chassity
Friday, January 7, 2005 6:46 PM CST
Hi Everyone!
Well I am finally finished with this week of chemo, thank God. I have started getting the bad cramps like last time but the diarreah isnt quite as bad. I have been doing well besides that. Maybe getting a littlw nauseaus here and there but nothing ativan cant handle. I have been sleeping a lot the last few days and nights from all the pain and nausea meds. Im actually surprised Im awake long enough to write this. Sorry if some spelling is wrong Im a little loopy.
Yesterday was a good day at the office because I got to see all my pals. Ayman was there who I havent seen in weeks with his sister Lujane. I played with them and Ashleigh too. We played with a little remote control car I borrowed from my brother. I gave Ashleigh a nail pollish set so with that she painted mine and Lujane's nails. Great job Ash!! Then my buddy Ryan and I finally got to play. We played with the car and talked until he started coughing. They now think it was an alergic reaction...possible hives in his throat. Poor little guy. But then he was given Benadryl off to sleep he went. I also got to see little Kristin and I got to meet her older sisters. Kristin looked good and her hair is getting so long. Mommy had it in a ponytail looking like Pebbles'! Shes so cute!
I will try to update over the weekend if anything worth writing about happens...my next appointment is Tuesday thought, I have a type and cross just in case!
Prayer Requests:
* Cedric - That he can soon move to only every other day appointment.
* Matthew - He hasnt been feeling so hot. Usually very active but now quite weak and dehydrated with no appetite! Poor little guy might have an infection.
Love and Prayers,
Chassity
Tuesday, January 4, 2005 8:53 PM CST
Hi All!
Today was only day 2 of this chemo! WOW it seems like Ive been on it forever. Since I took Zofran before taking my chemo pills I didnt get nauseaus. I had a fun day at the office though. My counts are still good. I got to see Ashleigh and let me tell you how adorable she looked with her hair getting long and in pigtails!!! She wasnt happy about being neutropenic though. I met a new little boy named Anthony who was just happy with everything. He is 2 with leukemia. Also, I saw Ryan!! He is my little buddy. He had his Slim Jims as usual except there was this humongus one that he was eating. It eas about 6 inches long and 2 inches thick....I cant believe he was eathing it. I didnt get to play with him as much as I wanted because the nurses kepting messing with my IVs. The one I left in over night didnt last so they put my third IV in since yesterday! Hopefully the one I have will last at least until tomorrow. they hydrated me first because I wasnt able to hold any fluids down yesterday and was pretty dehydrated. My other little buddy Matthew was getting hydrated too. Katie- Thanks so much for fixing my site up!! I am feeling a lot better today and hopefully I wont get bad side effects like last month!
All my Love and Prayers,
Chassity
PS- Angee I loved the penguins!! They were so cute. Mom had to finally take the computer aways from me cause I kept watching them and cracking up! The little things that amuse me! Tell Ceddy I say hello!
Monday, January 3, 2005 8:08 PM CST
Hello Everyone!
I started chemo today and let me tell you!! It is really hard on me! I also got pentamadine today. I slept most of the time at the office and on the way home. For the first time today I decided to eat around 6:30. Of course I got nauseaus and threw it all up emmediatly afterwards. Mom gave me a bunch of meds for it and they all came up too. I couldnt stop puking for about 2 hours. Most of it was dry heaves which gave me a headache. Since I wasnt holding any meds or anything down, mom called the doctors. Dr. Perdahl called us back and told us what to do, thank God she didnt make me come in to the hospital. Then I tool a Zofran (the ones that melt on your tongue) and within a few minutes I started feeling a little better. Im only allowed to drink an ounce every 20 minutes or so. So far that is staying down. This is going to be a very long long week. Im hoping tomorrow will be somewhat beter. I will try to update then if Im feeling ok.
Love and Prayers,
Chassity
Saturday, January 1, 2005 1:29 PM CST
HAPPY NEW YEAR!!
Yay! I am hoping that everyone has a better year (2005) than last year! Maybe God will up and heal us all!
LIFE is an opportunity- benefit from it-
LIFE is beauty, admire it.
LIFE is a dream, realize it.
LIFE is a challenge, meet it.
LIFE is a duty, complete it.
LIFE is a game, play it.
LIFE is a promise, fullfill it.
LIFE is sorrow, overcome it.
LIFE is a song, sing it.
LIFE is a struggle, accept it.
LIFE is tragedy, confront it.
LIFE is an adventure, dare it.
LIFE is luck, make it.
LIFE is too precious, do not destroy it.
LIFE is life, fight for it.
Prayer Requests:
*Please keep my buddy Ryan in your prayers. He was supposed to go to Duke for a transplant today but he had a rash thats cancer so he is on hold. Pray that this chemo will send it away enough to start transplant!
*Visit Matthew's Page He has leukemia.
All my love and prayers,
Chassity
Tuesday, December 28, 2004 6:14 PM CST
Hello!
I had my office appointment today. It was just a quick visit because my counts were great and even going up. We took my nephew Ricky with us. Everyone wanted to hold him cause hes soo cute! He cuddled with me on the couch and we both fell asleep there. He is a good baby, not too much crying.
We got some results from the scans: They do show some progression but the chemo from Thanksgiving and radiation helped that. Im still not "clean" enough to do the monoclonal antibodies in NY yet so I will get the same chemo as last time next week. And yes its the same one that has been giving me BAD stomach cramps but it will be a lower dose. Luckily my stomach is back to normal and I can eat regular foods now.
YAY!!!- Cedric got to go home to their appartment today. One step closer to being home in VA with us at the office!
Love and Prayers
~*Chassity*~
Monday, December 27, 2004 10:25 PM CST
OK I CHANGED THE BACKGROUND BECAUSE SOME PEOPLE WERE HAVING PROBLEMS READING IT, IF YOU CANT READ THIS ONE OR THE COLORS ARENT READABLE PLEASE LET ME KNOW. ON MY COMPUTERS IT WAS SHOWING UP FINE SO SORRY!
MUCH LOVE AND PRAYERS,
cHaSsItY
Sunday, December 26, 2004 6:42 PM CST
Hello!
I hope everyone is enjoying their holidays! I certainly am. I went outside today to ride my new bike with my brother and boy did I get TIRED!! And BRRRR it was cold! We had fun though. We went to the store with my dad to see all the stuff that was on sale. My brother got a necalace for his "girlfriend", their 14, talk about puppy love. Hahaha.
I loved playing with Ricky (my nephew), hes almost 2 months now. He is a chunky little thing though. Im waiting for all the little bandages to fall off where they pulled my central line. I got to the doctors on Tuesday and hopefully they will have the results of my scans, Im a little nervous but excited to just know. My belly pains have been sooo much better today. So far I have taken no pain meds which is fabulous! I will try to update after my appointment.
Prayer Requests:
*Please pray for my friend Melissa who I used to babysit her two little toddlers. From what I've heard, her cancer is getting really bad and shes not doing so well. Please pray for her to be pain-free.
Love and Prayers,
*Chass*
Saturday, December 25, 2004 8:43 AM CST
MERRY CHRISTMAS!
I hope everyone is enjoying the holiday season. I got wonderful gifts this morning. I absolutly love them all. I had to take some pain meds for my stomach but Im feeling a lot better now. My favorite gift was to be home and spend it with my family. My sister and nephew are coming over soon, Im soo excited to see them. My mom spent all day yesterday cooking, and she did a fabulous job. "Santa" did a great job on all our gifts. Yesterday, a santa came to our house to give my brother and me each a bike! They are really nice bikes too. Mr.Crump was so kind to buy 15 bikes and give them to kids with cancer and their siblings. God bless him. I had known about this for a while now. He is delivering the other bikes today to the younger kids. He does this every year for kids. Different illnesses though. A few years ago he did kids with AIDS. It really makes you think, there really are angles out there. I got clothes and jewelry and games and nail stuff, ect from my mom dad and brother. I hope everyone else had as nice of Christmas as me.
Prayer Requests:
*Please pray for Trey's family for he became an angel the other day. Of course its sad but Im glad because now he isnt in any pain and hes cancer free. He faught until the day he died, now he doesnt need to fight and only good things will happen to him in heaven.
Love and Prayers,
Chass
Tuesday, December 21, 2004 3:34 PM CST
Hello!
Today was an ok day. I got my line removed this morning which wasnt too bad. Its a little sore now though. That means I have to deal with peripheral lines for a while now. I will probably get another central line placed after the holidays. I will be heading home tomorrow evening though. My scans will get finished up around lunchtime tomorrow, then we will clean the RMH room and head to New Jersey to fly home. Mom already made me an appointment for Thursday at the office in VA to get a platelet transfusion to get me thru the holidays. Ive never had a blood product go thru me anywhere but my line so that should be different having it in my hand!!
When we got back to the Ronald, we went to the living room area to recieve a gift from Derek Jeter, from the New York Yankees! It was awesome! The gifts were really nice too, I got a purple boombox. I love it! At 5 another organization is coming to give out another gift, and their not done there either. At 7 we get ANOTHER gift and a dinner! Wow! Im so excited!
I got to meet Jay, a 16 year old with NB. Its nice to see other teens with it but its not very common for girls to have it especially teens. Well, I met a 15 year old girl with NB too! Jay's mom told me about her the other day and I was looking forward to meeting her and finally today I got to. Shes really nice, her mom too. We will get to chat more with them at dinner. Its soo wierd because I have seen both of them previous times and never would have guessed it was them.
I will update when I get back home to VA tomorrow!
Love and Prayers,
Chass
Monday, December 20, 2004 5:09 PM CST
Hi!
Well, we left at about 8 this morning and took the transportation van from RMH over to Sloan. When we got up to the day hospital, we got my schedule and I was sent to get my counts checked. We had NO idea how to read the schedule so after they drew my blood we went in to see the doctor. She didnt know how to read it either, hahaha, so she got on her computer and printed out a readable copy. We went over the schedule and when we saw some dates that said Dec 27, we had to fix it. So she just crossed those out, made some calls and had the scans set up for Wed. Then she asked the normal doctor questions and examined me. She had to kind of rush because I was going to be late for my PET scan. Then we went downstairs for that. After they injeted me, I had to sit still for an hour and a half. I just played a game and then slept. The scan went by pretty quick even though it took 1 hour. We went back up to see both my docs. The doctors from VA had just faxed them to let them know I had an infection in my line...staph epi. We didnt have much time to discuss what we would do about it because they were ready to do my bone marrow. But the options were either pull the line or addmit me. I wanted neither. The bone marrow asspiration was very quick. I was only asleep for about 10-15 minutes. Then they gave me duladid for the pain and we went back to talk with the doctors. I was upset to hear their final decissionn. They INFORMED me that I would be coming back early in the morning to have my "best friend" pulled!! OH NO!! I got to decide if I want a port or another line placed. I said a line because I hate needles and dont want to have to be accessed. So tomorrow I will get it pulled and have an injection for a MIBG scan. Then Wed I will get the MIBG scan and a CT. Then Im all done! They dont have a slot for me to get another line placed so I will get that in VA. Mom and I have agreed we dont want to hear any results good or bad until after the holidays. We want to enjoy them this year. I will update in a day or two. (we are having problems signing on)
Thanks for checking in on me!
Love and Prayers,
Chassity
Sunday, December 19, 2004 6:45 PM CST
Hello!
Well, today has been quite fun too. We went to the The Museum of Natural History. It was very interesting to see all the animals and how people lived back in the day. We got to see an IMAX movie on Vikings, which was neat. We were tired by the end of that so we decided against going ice skating. Maybe one day this week if we get out of the hospital early. It took so long to catch a cab on the way back! I guess because it was raining a little. Tonight we are supposed to get 1-3 inches of snow!! My first snow of the year!! YAY!
I will be going to MSKCC at about 8 in the morning. My PET scan is at 9. My bone marrow asspiration is at 1:30. We arent sure what other scans I have yet. We will get the schedule in the morning when we get there. Hopefully we wont have to be there ALL day long. But anyways I will update sometime tomorrow evening.
*Kelly- I hope you have a great first day of work at the office tomorrow!!
Much Love,
Chassity
Saturday, December 18, 2004 9:08 AM CST
Update=
Hi Again!
Wow! I did a lot of walking today. We got tickets to go to a dance theatre. The show was soo good. Those dancers were amazing. I met a family with a little boy who HAD Neuroblastoma, he has been in remission for 4 years now. It is just so encouraging to hear things like that. I met Jay's mom today on our way out. She says Jay is doing better. Maybe some time this week I will get to meet him. Hes my age with NB. My stomach is feeling a little better. After the play, we went to see the huge Christmas tree at Rockefeller Center. It was beautiful but talk about crowded to get there. There were sooo many people walking in the street. We walked for what seemed like forever to get to Sarindippities (sp) to get a frozen hot chocolate. Dr P says they are really good and to get one. Well when we got there the line was really long so we said forget it and got a cab back to RMDH. We also shopped a little at the stands for xmas gifts. Overall the day was ton of fun. Tomorrow we plan to go ice skating. That will be an experience since neither mom or me have ever been. Wish me luck!
Hello!
We had a safe trip to New York! The flight wasnt too bad. We even met a lady at the airport who had cancer. We are staying at the Ronald McDonald House again. There was a Santa here last night giving out gifts. One is supposed to come every few nights to give all the kids a present. Since we have no appointments for the weekend, we are planning to have some fun in the city. We are going to try to go to a play later today. My stomach has been bothering me the last day or two so that will depend on how I feel later. I will try to update later to let you know what we did!
Prayer Requests:
* Trey - He was able to leave the hospital on hospice last night, thank God. He is having his Christmas today. Pray that his pain gets better.
* Cedric - GROW CELLS GROW!!
* Please pray for Rhonda and Ernie. Yesterday marked 1 year since they lost their daughter, Michelle.
* Pray for all the other families that have lost a child or family member during this season.
Much Love,
Chassity
Thursday, December 16, 2004 8:32 PM CST
Hey!!
I got my platelts today so it was a pretty long day! Heather (Ashleigh's Mommy) made me a watch for Christmas and its beautiful. Thanks Heather, I love it! since I get benadryl with platelets, I was a sleep for a while. They had to draw cultures again because the ones from Monday came back positive!! ERRRRR!!! If these ones also come back positive, I will be put on some kind of antibiotics! Im not sure how that will work since I leave for NY tomorrow afternoon??!! I hate having infections! Oh well, gotta do what ya gotta do! It is going to be soo cold in NY next week, possibly snow on Wed!! BRRRR! Tomorrow is my last day of radiation! YAY! I got to see Kathy again there, she looks great. (The tech from the hospital) I might get to see Lisa with her tomorrow. I am taking my laptop so hopefully I will be able to get on and update, depending on my time. Sounds like Im going to be SUPER busy. I am really dreading all those scans, I cant stand them. And the bone marrow..aghh!
Prayer Requests:
*Ceddy-GROW CELLS GROW!!
*Trey-A little boy with Neuroblastoma who isnt doing well at all and needs our prayers to make it home for Christmas to be with his family. Trey's Webpage
*And a friend with cancer who lost his mom to a blood infection.
Love and Prayers,
Chassity
Monday, December 13, 2004 3:55 PM CST
Hello!
This is my last week of radiation. Tomorrow I will meet with the radiologist just for a check up. So far radiation has been a peice of cake! I also had a doctors appointment today. Luckily I needed no blood! On the other hand, my platelets were only 30 so I will go back Thursday for a transfusion so they are good for NY. Im not really looking forward to getting all the scans again up there becuase I cant stand scans but my back has been hurtung the last few days so hopefully they will tell if the cancer has gotten better or worse. Lets hope the radiation made enough of a difference to go ahead with the monoclonal antibodies!
Prayer Requests:
*Aaron's family- A boy who earned his wings a few days ago. His lost his battle to Neuroblastoma. We have been reading his webpage for a while now, such a strong little boy.
*Ceddy- Who is at Duke for a transplant, pray that the cells with GROW! and his discomfort disappears.
*Zach- Another friend who also has Neuroblastoma and has been in quite a but of pain.
~*Congratulations to: Loren for finishing treatment!! GO LOREN!!! and Kelly for the new addition to her family- Summer Jane Boone, born Thursday!*~
Much Love,
Chassity
Thursday, December 9, 2004 7:44 PM CST
Hi!
Im doing really good. We are staying at the Ronald McDonald House here in Fairfax. I have had radiation every morning and then Ive been having office appts so it was easier to stay here and not drive back and fourth everyday all day. Last night was the Growing Hope's yearly Holiday Party for staff and patients and family. All the patients and siblings got a gift from Santa, dinner, and just to chat with all the other families. It turned out really nice and we all had tons of fun. I had my counts checked today at the office and they were pretty good even though they are coming down slowly. I go back Monday for a possible blood transfusion. My hgb was 10.6 and I get transfused if it gets below 10 so we will see.
We were happy to get to see Ayman, Aula, and Lujane today at the office, since we hadnt seen them in soooo long! It was also nice last night getting to see sooo many patients that have been out of treatment for a while....and with HAIR!!!
I will be flying to NY agian for all those scans to be redone on the 17th and coming back the 23rd..just in time for Christmas!! I will update after my appt on Monday!
Much Love,
Chassity
Monday, December 6, 2004 11:40 AM CST
Hi!
We are home from the hospital and the pain is better. Im not really taking any meds for it anymore. Today was my first day of radiation and it wasnt what I thought it would be. It only lasted about 2 minutes all together and it was basically like an xray. I have to get it every morning for the next 2 weeks before we head to NY again for MORE scans! My counts are back up and they seem to be staying there or dropping very little. I dont have to go back to the office until Thursday. We will be goig to the holiday party wed though. I will update later this week!
Much Love,
Chassity
Saturday, December 4, 2004 10:22 PM CST
Hello All,
This is Carrie, Chassity's mom. She wanted me to update for her. She was admitted to the hospital on thursday because of stomach pain cause from the chemo she got last week. They started her out on morphine but changed it to dilaudid to ease her pain. That has seemed to help alot better. She had a ct scan this evening to see if anything is wrong in her stomach area. We should find out those results tomorrow and hopefully they will let her go home. She will update as soon as we know something. Until then....
Carrie
P.S. Here's a little boy and his family that needs some prayers.
www.caringbridge.org/il/aaronhunter
Tuesday, November 30, 2004 7:11 PM CST
Hello!
I was able to wait until today to go to the doctors. And I was right, my blood is low. The usually transfuse me when my hgb is below 10 and today it was 8.9. The hydrated me for a few hours because I felt dehydrated and the type and crossed me for a blood transfusion tomorrow. My stomach is still really bothering me but between percocet and ativan we've got it under control. I havent been eating much because of the nausea either. But I am actually eating strawberries right now. yumm! I was happy to see Laura Cottle today but sad for the reason she was there..a possible relapse, so please pray that it isnt! I just want to say hi to Ceddy, Angee, and their family...and we are still praying for you guys!
Much Love,
Chassity
Sunday, November 28, 2004 5:00 PM CST
Hi
Sorry for not updating sooner. I havent been feeling so great. Im still pretty nauseous from the chemo but its not too bad with a little help from meds. The last 2 days Ive been feeling weak so depending on how I feel in the morning we may change our Tuesday appt. to Monday to see if I need a blood transfusion. I have a hard time remembering things because one of the side effects to the chemo is memory loss...and it worse the "chemo brain" but its only temperary. So if I repeat myself...sorry! Anyways, I will update after my appt either tomorrow of Tuesday!
Much Love,
Chassity
Wednesday, November 24, 2004 8:30 PM CST
Hi!
Mom gave me the vanco at home this morning so that should have made my office visit shorter but no, we still had a long day. They had to do the TPA for 30 minutes and then take cultures from all my lines which takes about 30 minutes. I got ativan iv before chemo so that my stomach wouldnt get upset and also kytral but then I got really dizzy and didnt feel so great the rest of the time so they slowed the chemo down a little. It was after 4 when we finally got out of there and then we were oh-so-lucky to get to sit in holiday traffic for over 2 hours! I took my po chemo when we got home and Im still feeling sick but not too bad. I will leave to go to the hospital tomorrow evening and be home sometime Friday evening. Ill try to update then.
Much Love,
Chassity
Ceddy- Congrats on getting this far!! "GROW CELLS GROW!!"
Tuesday, November 23, 2004 4:54 PM CST
Hello,
Yesterday I started chemo at the office. Since my blood cultures are positive, they draw new ones everyday plus Im on Vancomycin. I get red mans with that so usually I get benadryl after. The chemo isnt making me TOO sick, just naseaus and tired. Thursday and Fridays chemo will be in the hospital because the office is closed. I will update later this week!
Much Love,
Chassity
PS- GOOD LUCK CEDDY! WE MISS AND LOVE YOU!
Sunday, November 21, 2004 5:30 PM CST
Hello!
Today we had Thanksgiving dinner and it was great. My sister and brother in law and nephew came over for dinner. Also my friend Jessica ate with us because she had stayed the night before. My dad and brother are out of town for a week for hunting season....like they do every year. Tomorrow I will go to the office for chemo. Dr Weil called yesterday evening to let us know the results form my cultures...they were positive. They are going to retake them tomorrow because they dont know what type of infection it is. That mean they will probably want me on some kind of antibiotic. We will see though. Ill try to update tomorrow to let you know.
Much Love,
Chassity
PS- If you get a chance, go to my friend Ceddy's webpage and read the story that Angee wrote about a friend she just met who needs prayer! Click on the name "Cedric" above! Also pray for Ceddy while he is getting intense chemo! Thanks!
Friday, November 19, 2004 5:22 PM CST
Hi!
Ok I know that everyone who read yesterdays update is going to be just as confused as me when you get thru with this one. Dr Weil called us last night to tell us that there is a change in plans. She looked at the scans with the radiologists down here and they both agreed that its possible there is no cancer in my lungs but maybe on my ribs. (they cant quite tell which place it is) They are also thinking that the cancer in my shoulder did not spread. Because of that, the MIBG treatment might not be needed. So, now the plan is for me to do chemo in the office on Mon-Wed of next week. Since the office is closed on Thurs-Fri, I will be admitted to get the last 2 days of chemo. Since Thursday is Thanksgiving I will get a day pass to leave in the evening. We will be celebrating Thanksgiving this Sunday though. That way I wont be sick and can enjoy the day. I had an unexpected appt today because I woke up sick. We think its just a cold thats been going around my family but the nurses did a bunch of cultures to be sure. Also some time next week I will be getting radiation to my shoulder. Thats as far as Im going to go because Im sure plans will change yet again and I dont want everyone too confused. I will update if anything else changes or after chemo on Monday!
Much Love,
Chassity
Please keep praying for Ceddy and his family. He was admitted today to start chemo for transplant!
Thursday, November 18, 2004 1:18 PM CST
Hi,
(Today marks my one year aniversery for having my main tumor removed!!)
Today I had to go up to the hospital to talk with Dr. Weil. She called last night and said that she had some results from NY but wanted to see us in person. Kelly, one of the nurses from the hospital who Ive become very close to was asked to join us on her day off, along with my social worker and the head nurse there. I knew then that the results werent great. But they also werent too bad. We wont be going to NY for any treatment right now after all. The cancer has spread to my lungs. There are 3 nodules in my left lung and also the spot in my sholder has increased. All the other spots has stayed about the same. We are going next week to see a doctor at CHOP in Philidelphia to consult about doing MIBG treatment. (A type of radiation) The only part Im not thrilled with about that is that for 5 days I will have to be in a room all by myself. My mom cant even come in. Now with special gowns and stuff the nurses will be able to come in and do what the have to do. Mom and I will be able to see each other and talk but she wont be able to come in my room. She would be in the room right next to me at all times though. We will have to do 3 rounds of this. We are hoping that after this treatment is done it will have killed enough cancer for me to try monoclonals in NY again. Mom and Kelly are being very positive about it so that is really helping me. I have always been taught that no matter good or bad there is a reason for everything.
Much Love,
Chassity
Wednesday, November 17, 2004 4:56 PM CST
Hello,
Well my doctors from NY havent called yet so that means we probably wont be going to NY until after Thanksgiving. Thats not a bad thing because now we will be home for it. My appt at the office yesterday went fine. My counts were really good and my platelets keep going up so we were happy about that! I will update again when we find something out!
Kelly-Did you get my email?
Much Love,
Chassity
Sunday, November 14, 2004 12:03 AM CST
Hello,
Sorry for not updating…caringbridge wouldn’t let me again! My trips to and from NY were fine. I got a bunch of scans done while I was there and a bone marrow aspiration…which left me sore the next few days. I got to spend this weekend with my sister and my new nephew. I should be starting my antibody treatment very soon….probably the end of this week! I will update when we know for sure. Until then,
Much Love,
Chassity
Monday, November 8, 2004 4:11 PM CST
Hello!
I had a doctors appointment today and it went well. My counts continue to be good and my platelets are still going up! Then we stopped at the hospital to pick up scans to take with us to NY and we got to see the nurses again..Charawn. Then we went to visit my sister and nephew. They were discharged today. They are both doing great. The plane leaves at 6:50 in the morning so we have to pack tonight so we can get up early in the morning to leave. I will be taking my laptop so I can update while Im up there.
Much Love,
Chassity
Sunday, November 7, 2004 2:15 PM CST
Hi Everyone!
Guess what?! Im an aunt! My sister had her baby yesterday at 12:19 pm. Derrick Leroy Brown Jr. He was 7 pounds 14 ounces and 20 ½ inches long. I have been trying to update for over a week but caringbridge isn’t letting me..not sure why, hopefully it will work this time. I am leaving for New York on Tuesday. I have a doctors appt this Monday just for count checks though. I had to get a blood transfusion Monday and also an injection to help my white blood count. It seemed to work because my counts were pretty good on Thursday. I got some scans at Fairfax Thursday also. My bone scan showed just as much cancer as July but it didn’t get any worse so that was a good thing. I got to go up and see the nurses too. It was good to see them especially KIMBER and CHARAWN!!! I will try to update tomorrow after my appt.
Much Love,
Chassity
Saturday, October 30, 2004 5:07 PM CDT
Hello!
I got my anti-pnemonia meds at the office yesterday. I got my usual reactions so they gave me more benadryl. The party was lots of fun...candy and pizza. It was nice to see a lot of kids I havent seen in a while. The nurses did a great job dressing up!! I just went as myself...its no fun to dress up when I either had to wear a mask or stay in a room but it was still fun. For some reason my blood counts were down which is weird because they have been really good for the last month but on Monday I get to get transfusions...FUN FUN!!! Hopefully some time next week we will find out what my next step will be....more the likely it will be NY...but when I dont know. I will try to update Monday!
Much Love,
Chassity
Wednesday, October 27, 2004 4:30 PM CDT
Hello,
Sorry for not updating...Ive tried to but it doesnt accept. Ive been doing well though. Finally off of TPN!! Still getting sick now and then but doing pretty good and eating and drinking well too. Also Ive been getting caught up on school work. Im due to be an aunt any day now...Im soo excited! I have an appt. Friday at the office, and the Halloween party should be lots of fun.
Angee- I hope things with you and Ceddy get better soon!
Much Love,
Chassity
Thursday, October 14, 2004 4:13 PM CDT
WE ARE HOME! THANK GOD!
I am on horrible TPN (IV food) at home and it is so annoying to carry around this backpack. But who cares because IM HOME!! Ahhhh...the first thing I did was callapse on the couch! Then made myself cozy in mom's bed the rest of the day and today....hehe 10:30 tomorrow we have an office appt....maybe platelets and we are praying they will at least reduce the TPN. I was off of it most of yesterday waiting for the home health care nurse to come and I was starved but I ate...for the first time in about 2 weeks. Now that Im back on it...Ive been sick..just not feeling good, I felt soooo much better when I was off it. We will see tomorrow though. I have been able to drink a little and I ate soup last night and held it down along with all my meds so that is an improvement from the last few days. They gave me a cake (tempting to eat but Ill pass) and a gift certificate to Red Lobster (requested) and cards and confetti when I was discharged yesterday. It was all fun! Keep praying for Kevin to get to come home too!!
That was my LAST scheduled trip to the hospital so hopefully besides visiting and scans I will never have to go back....oh yeah...eventually getting my line removed!! Ill update tomorrow!!
Much Love,
Chassity
P.S.- I miss ya Kelly!! I have "positive energy" with me though!
Monday, October 11, 2004 5:20 PM CDT
Hello All,
Sorry I haven't updated sooner but we have good news. Her counts are up to normal and we are going home tomorrow. WOOHOO!!! I'm so happy to get out of here and back to our own beds. My back really needs it. Shes still nauseaus and not eating but they are sending us home with TPN (IV food). Shes off all other IV meds and is taking pills instead. I think once we are home she'll start eating again. She has to get a platelet transfusion in the morning before we leave. That should hold her over till we go back to the doctors on friday for blood counts. I will have her update this the next time since shes been slacking the past couple of weeks. Until then......
Carrie
Thursday, October 7, 2004 6:31 PM CDT
Hello All,
Great news!! Chassity's counts are starting to come back. That means her Stem cells are growing. It's all up hill from here. Maybe if all goes well, we'll get out of here sometime next week. I think we're both ready to leave. We've been here almost 4 weeks now. It will be really nice to sleep in our own beds. She still has mouth sores but they are starting to get better and maybe in a day or two she'll want to eat again. She still feels nauseaus but its not as much as it was earlier this week. Shes been keeping up with her walking which really helps with the recovery. I will continue to update with her progress.
Carrie
Tuesday, October 5, 2004 9:58 AM CDT
hi, sorry for not writing in such a long time. I have been really sick and still trying to get over it. The worst right now is the mouth sores, which have gone down my chest and into my stomach. I havnt eatin or had anything to drink in about a week....Im so thirsty. Today I noticed I had a bump on my back, so they called Dr K to come take a lood. They searched my body and found many more on my back, neck, arms, and legs. Later on today my nurse (Kelly) will culture them which doesent me the happiest person. But they itch so it will be nive to know that they are. I am an a PCA (morphine pump) because Im having soooo much pain from them. And on top of that they chemo gave me diareah??SP I had a fever of 102.somethig the other dat so they put me back on Vanco to fix whatever is growing. I havent had aut a low grade fever since then. (only 99.9ish) All my meds went IV because I was unable to hold ANYTHING down but they lowered the pain meds today because I was just too loopy. So forgive me if this journal entry is hard to read...also I just had my premeds for VANCO(benadryl) haha. Mom is washing some clothes over at the Ronald McDonald House right now. The benadryl is really kicking in so I will let you all go and hopefully the next time I update, it will make better since. good night for now!!
Much Love,
Chassity
Thursday, September 30, 2004 12:37 AM CDT
Hello all,
I just wanted to let you know how Chassity is doing. Shes getting more mouth sores and shes still nauseated. She's not able to eat cause of the mouth sores and when she drinks anything it comes right back up. Other than that shes doing good for going thru a transplant. I still read the questbook to her every evening and she enjoys hearing from everyone. So please continue to sign her quest book. I will update again soon.
Carrie
Monday, September 27, 2004 2:32 PM CDT
Hello all,
This is Carrie (Chassity's mom). Chassity asked me to update for her. Shes doing really good even though she has had high does chemo. She has been very nauseated but they give her plenty of IV meds to help with that, and those of you that know her knows she loves her IV meds. Shes been getting mouth sores so its hard for her to eat as much. Thank god shes likes chicken noodle soup.
Well today is Day 0 and Stem Cell transplant day. It took about an hour for the transfusion and all went well. It was just like getting a blood transfusion. They checked her vitals every 5 minutes to make sure everything was going good and she came thru with flying colors. I think we both were a little nervous before it started but after it was over it was like no big deal. We are very happy that this part of her treatment is behind us. Now she just has to let these stem cells grow to bring her counts back up then we'll be out of here. Hopefully in the next 2 weeks.
Thanks to everyone thats been signing her questbook. I read them to her everyday and she really enjoys hearing from everyone. I will update in a few days to let you know how things are going with her.
Carrie
Wednesday, September 22, 2004 5:34 PM CDT
Hello all,
Chemo has not been fun so far. Not as nauseous as usual but still a little and mostly tired. Monday is my reinfusion day. I dont have much to say but I wanted to let everyone know how I was doing!
Chassity
I will try to be in touch with all those other MB4's who signed my guestbook as soon as Im feeling a little better!
Monday, September 20, 2004 2:12 PM CDT
Hi Everyone!
I started chemo today....fun fun...NOT! I am about to fall asleep from the benadryl and ativan infusion Im getting. It makes me soooo tired. Hopefully the nausea and vomitting wont come until tomorrow at its earliest, we will see though. I think I am going to take a little nap and I will update tomorrow to let you know how Im doing.
PLEASE SIGN MY GUESTBOOK SO I KNOW WHO HAS VISITED!!
Much Love,
Chassity
Sunday, September 19, 2004 6:49 PM CDT
Hello,
Not much new is going on. Still getting antibiotics for the infection. So far we think there is 2 days in a row of clean cultures so we should find out in the morning when I will start chemo. This morning we had to put TPA in my lines because they were having a hard time getting a blood return from all the lines. After an hour of TPA they worked fine. Not too sure what all that was about. Dr P should be coming in the morning and she will give us an idea of whats next and when. Mom just left for the Ronald MacDonald House as she has been the last 2 or 3 nights. Ive just been hanging out in my room reading or whatever. I will update if there is any news tomorrow.
Much Love,
Chassity
Friday, September 17, 2004 12:50 AM CDT
Hello!
Sorry for not updating yesterday. I slept most of the day form my premeds for the antibiotics. My friends Ashleigh and Ayman are in the hospital too for fevers. We were happy to see each other since it has been so long since we were all in here together. Both of their fevers are gone and they should be leaving today. The results of yesterday's cultures were clean so hopefully todays will be to. If thats the case I whould start chemo on Monday. My sleeping schedule is really off because of the benadryl..sleeping in the day and awake at night!! Im going to stay here alone tonight so that mom can go to te Ronald McDonald House for a nice night of sleep on a real bed. It will give me some quiet time to work on my homework which I have been doing daily. I will update tomorrow or whenever we find something out!
Much Love,
Chassity
Wednesday, September 15, 2004 5:26 PM CDT
Hello!
We found out today that my infection is a Staff Epi and thats the good one!! But if its not cleared up by the end of three days then my central line will be pulled and replaced a few days later to start me transplant. I slept most of the day from the benadryl I get for my antibiotics. Also, I worked on some reading homework. Besides that my day has been kind of boring. My antibiotics have been reduced to only twice a day instead of three times so at least I wont be asleep sooo much tomorrow. I will update tomorrow hopefully with good news!
Much Love,
Chassity
Tuesday, September 14, 2004 4:44 PM CDT
Hello!!
Ok I have bad news and good news...well mostly just bad news. Transplant is on a delay for a while. Remember how I said yesterday we couldnt get a blood return from any of my lines well the cultures showed a staff infection in all 3. I started Vanco (antibiotic) today for it. They dont know which staff it is because there are 2 different kinds, a good and a bad one. If its the good one then I will be on Vanco for 3 days and on the 3rd day if they are clean then I will start chemo the next day. Now if its the bad one then transplant has to be delayed for at least 2 weeks because if they went ahead with it then a mix of low counts and the infection could cause me to die. Also if its the bad one then my line will be pulled and replaced with a PIC line untill they can get a new central line in. We are praying its the better one. A little bit of good news is that I have no fevers yet so we caught it early. I am off fluids though untill we know when transplant will be whic for me is a good thing because now Im not up all night peeing. We should know hopefully tomorrow which infection it is so I will update then and tell you!!
Much Love,
Chassity
Monday, September 13, 2004 9:00 PM CDT
Hello!
I had a doctors appt. today to be addmitted for my stem cell transplant. When they went to draw my blood to do a counts check, there was no blood return. It flushed just fine so they put in some TPA and sent me off to the hospital with my orders. I got here around 2 after stoping for lunch. When they took the TPA out, it had a perfect blood return...wheeeww!! Then they hooked me up to hydration. I will start they chemo tomorrow along with all the precautions. A little while ago my thech came in to take my temp and it was a low fever....100.1. Not too bad but if it gets any higher then it could mess with transplant!! I have been having bad headaches all day that are driving me crazy..nothing a little morphine cant fix...haha just kidding. I started working on my scrapbook today and Cami took a pretransplant picture of me before
I loose all my hair again. Well, I will update tomorrow evening!
Much Love,
Chassity
Day -8
Thursday, September 9, 2004 1:14 PM CDT
Hello Everyone,
I just wanted to thank everyone who has been praying for my friend Justin. He passed aways peacefully yesterday around 1 pm. He no longer has to feel any pain and is whole and happy again. Please continue to pray for his family.
Chassity
Tuesday, September 7, 2004 2:39 PM CDT
Hello!,
I had my doctors appointment today and my counts were good. My platelets were 68!! For me thats good! We got to visit with our freinds Ayman, Lujane, and Aula so that is always fun since we dont see them too often. Also other freinds were there as usual with us. My bone marrow is clean so its set in stone now that I am to be addmitted for my stem cell transplant this Monday! I was supposed to go tomorrow but there was some confusion and one of the docs forgot I was really looking forward to going to Kings Dominion this weekend with the office so she said Monday would be fine that there was really no difference. I will start the heavy dose chemo on Tuesday and that will start with day -8. I will have day -1 free and day 0 (Wed) will be my actual transplant day!! I will update later this week!
Much Love,
Chassity
Saturday, September 4, 2004 1:21 PM CDT
Hey!
I had my bone marrow aspiration on Thursday as planned and was very sore yesterday from it. It's a lot less sore today though. My dad and brother are out of town for the weekend so its been just me and mom....girls week!! I have been on the internet a lot the last few days just researching. I foung a 12 year old boy who also has Neuroblastoma like me. Its rare for teens to have this cancer so I have been writing him. I have also been keeping up with my freind Justin from SC.....and still praying for him. Its so sad he and his family have to suffer this way, they have been on my mind a lot. My next office appt is Monday...they are letting me have an extra week off before going to transplant so that I can go to King's Dominion with the office on Sept. 11!! I will update after Tuesday!
Much Love,
Chassity
Wednesday, September 1, 2004 12:30 AM CDT
Hello,
I have been doing really good the last few days. I started my homebound schooling for 10th grade yesterday. Im taking Literature 10, World History 2, Life Planning, and Introduction to Phychology...this are the classes Im taking for the first half of the year. Last night I went to the Ronald Mcdonald House for Teen Night. We had lots of fun! I go to the office tomorrow for my bone marrow. Lets hope there is no cancer in there so that I can still go to transplant!!!........I will update when we find out something!
Please continue to pray for Justin...www.caringbridge.org/sc/justintrotter
Much Love,
Chassity
Monday, August 30, 2004 4:09 PM CDT
Hey,
Sorry I havent written in a few days! (Angee) LOL! Anyways, the results from my kidney test came back to show that everything is A OK for transplant. I had 2 units of blood today at the office. It was a fun day at the office, we ordered pizza for lunch..yummyumm!! They want me to go in for transplant next Wed. but we asked if we could wait until agter Sept.11 because thats when the office is going to Kings Dominion and I would really like to go. It depends on the doctors though, no big deal if they say no because there is always next year! On Thursday I have my next office appt. and a scheduled bone marrow. Also, maybe some platelets. I will update soon!!
P.S.- Please continue to pray for my freind Justin while he is still not doing well. www.caringbridge.org/sc/justintrotter
Much Love,
Chassity
Tuesday, August 24, 2004 3:53 PM CDT
Hello Everyone,
My MRI went well and the results show that there is nothing wrong! I had a platelet transfusion yesterday because they were 20. I dont go back to the office until Thursday now. Besides my platelets, my counts are all going up. Last week I was very neutrapenic and yesterday I wasnt neutrapenic at all so they are recovering really quick! Hopefully my platelets will start to do the same. Also on Thursday I have my kidney test to see if Im ready for transplant...lets hope that I am!! I will update soon!
P.S.- Please pray for my freind Justin in SC to be at peace and comfort while he's not doing so well.
Much Love,
Chassity
Thursday, August 19, 2004 7:55 PM CDT
Hey,
Yesterday we were at the office all day long getting blood and platelet transfusions!! Today me and mom spent all day cleaning! It was hard work especially my room! It was a mess!! Tomorrow I have another office appt for some platelets to get me thru the weekend. Later tomorrow I have my MRI of the head sceduled. I will get benadryl and atavan to put me to sleep for it becuase I hate MRIs...the creep me out. I will update after we get the results of that back!
Much Love,
Chassity
Sunday, August 15, 2004 11:00 AM CDT
Hey,
Sorry its been a while since I updated!! I had chemo all last week at the office. So far my counts havent dropped any from it. I have a counts check on Tuesday and then an MRI of the head on Friday. I have been getting bad headaches for a week or two and they just want to check it out. In about a week they will do another kidney test on me to see how those numbers are. Thats really all that has been going on. I will update again later this week!!
Much Love,
Chassity
Friday, August 6, 2004 1:52 PM CDT
Hey,
Change of plans....no transplant! My scan the other day for my kidneys confirmed that they were not working right. My numbers werent high enough to do transplant for a while. I will have an office chemo next week and in 4 weeks they will test me agian to see if my kidneys are better, if they are I will go to transplant then. If they still arent better I will have no transplant at all and go straight into the antibodies. Sorry for all this confusion!! I will update later.
Much Love,
Chassity
Wednesday, August 4, 2004 10:21 PM CDT
Hello,
This past weekend my mom, dad, brother, and I went to Niagara Falls, Canada. We left Friday and came back Monday! It was sooo much fun. We spent a lot of time at the falls and watched the fireworks at night and the falls when they were lit up. We went down on the deck behind the falls which was awesome! We wpent a day at Marine Land which is an amusment park...with tons of animals. My favorite was the dolphines and killer whales! My brother drove me around in a go kart and about scared me to death! I was so happy to get to do something fun before I go to transplant on Monday! We had some more scans yesterday and an office appt. My blood was a little low and Im going in on Thursday after scans to get transfused becuase Im feeling a little on the weak side. Also we had my pre-transplant meeting with Dr. Perdahl and all the people at the hospital who will be helping me tru it like physical therapy, etc...
Im not looking forward to going in becuase I learned that
I will be on a VERY strict scheldule and I HATE any kind of schedule especially a strict one! But I know its going to make me better so Ill live thru it. I will be admitted on Monday, start the heavy doses of chemo Tuesday and then they will be ended Sunday and Monday will be a day off for me then Tuesday I will get my stem cells (transplant) and then from there...just getting my counts up and better! I will update on Monday hopefully!
Much Love,
Chassity
Sunday, July 25, 2004 6:38 PM CDT
Hello Everyone!
I had a platelet transfusion on Friday so that I wouldnt have to come back Monday for one and I could have a more carefree weekend. Well, as usual I got premedicated 30 minutes before the platlets arrive. Then the blood bank called and said it would be a little longer. We thought it was going to be a quick day but were we ever wrong...then I got to be premedicated for a second time becuase it took so long for the platelets to come that the meds had already wore off. But anyways I got the platletes and this weekend I went to PA. with my mom to see family. We had lots of fun and of course laughs......now since Im sure everyone is dying to know when transplant is going to be- August 9th and it will be here at Fairfax INOVA hospital! I will have no chemo before then and depending on how I tolorate the first transplant, they will deside then on the second one. I have from now til 8/9 to have free time so, we have desided to go to Canada to Niagra Falls next weekend! Its going to be lots of FUN!!
Kelly- Congrates on finding out your having a girl!! Im so happy cuase now I can teach her to be JUST like ME!! Since I know you cant get enough of me at the office!!!
Much Love,
Chassity
Monday, July 19, 2004 4:05 PM CDT
Hello Everyone!
Today was a very short day at the office. But I got a blood bracelet for tomorrow and also theres a chance of platelets...haha I sound like a weather man...tomorrow...chance of ran and platlets. So anyways its going to be a long day! Then I might have to get my monthly meds to prevent pnemonia which is an hour long IV. After all thats over I get to make a trip to the hospital for an injection for Wed. scan. And luckily its my last scan for the week. I am supposed to be addmitted sometime next week for transplant so maybe if my counts are good then this weekend we are going to go on a little vacation, but it all depends. I will update later this week!
Untill then,
Much Love,
Chassity
Wednesday, July 14, 2004 5:46 PM CDT
Hello Everyone!
This week has been pretty good. I had fun shopping over the weekend...we attempted to shop for my pregnant sister who is 6 months but she doesnt know what the baby is yet so it was too hard...we decided to wait til it was born then go crazy!! I got platlets on Monday and I've had scans all day today!! And some yesterday!! Today I had a CT and Bone and Chest XRay! The contrast for the CT was horrible!! Inbetween scans we ran to the office, rushed a nurse to draw labs and said hi to the doctor and like that we were gone again. My platelets were only 13 but we had to get back to the hospital for scans and also get home early for a dentists appt. Since the counts were low, the dentists were only allowed to look! But now my only free day which is no longer tomorrow, we go back to the office for a platelet transfusion. Then more scans thru next week. I will update when there is more to update!
Much Love,
Chassity
Saturday, July 10, 2004 7:09 AM CDT
Hi Everyone!
On Thursay I got 2 units of blood and a unit of platelets. So with the benadryl I basically slept all day. Then on Friday I got transfused with a unit of platelets. The blood bank was low on them so we had to wait untill almost 2! In between that time I had a hearing test which turned out normal considering I have had chemo that could damage the hearing. When we were waiting for the platlets to get to the office I got to practice giving shots of saline to the nursed becuase I want to be able to give myself shots at home. A total of what they called 9 "victims" trusted me...haha and they all said I was very good at it, they hardly felt it! Even Dr. Kitchen let me, she was the only one that let my do her stomach which is where I will be giving them to myself. I feel very confident to give them to myself now. Later today will be my first try. Well I am going out with my mom to spend the day shopping..all fun!!
Talk to everyone later!
Much Love,
Chassity
Sunday, July 4, 2004 6:05 PM CDT
HAPPY 4TH OF JULY!!
I'm doing really good this weekend. Hopefully my counts are too! Later on tonight we are going to set of some fireworks and watch the ones at Great Meadows from the house. Today I visited my sister's new house and helped the fiance set up the crib for the baby's room....of course I did most of the work!!lol! It's a cute little house and there was a parade right in front of the house. Im getting extra shots daily to help bring my counts up so that I can go in the hospital to have my stem cells collected on Tuesday or Wednsday. We'll see.........enjoy the 4th weekend!
Much Love,
Chassity
Saturday, July 3, 2004 5:10 PM CDT
Hey everyone!
This round of chemo is OVER!! So far Im doing really well. I get a long weekend off of office visits so thats always good. I go in Tuesday for a count check and if all is good then I will be addmitted for stem cell collecting again. If not then they will check me again on Wednsday and so on. They would really like to be able to collect some more stem cells so that I can have two transplants (if my body and heart can handle it) and still have extra incase I ever relapse. Probably some blood and platelet transfusions next week though but thats normal after chemo. It was absolutly great seeing Aula and Ayman...both doing good. Everyone loved seeing all the couch people back together even if we all had to gather in a small little room to see Ayman. I hope all stays well for you all! So far we have a set date for addmitting me into the hospital for transplant-July 26th....as long as nothing changes. Well I hope everyone enjoys their 4th of July weekend!!
Much Love,
Chassity
Annie- Those extra "fireworks" were pretty entertaining though!!
Wednesday, June 30, 2004 3:48 PM CDT
Hello Everyone,
Today was just another day of chemo. My brother came along with us. I was soo happy cuase we got to see Ashleigh and Penny and Heather there. And Ash- the "hole" in your mouth looks awesome! Now I cant wait untill Friday becuase Ayman and Aula have an office appt. becuase they are going to be home for the 4th of July weekend and we are ordering pizza for lunch. I'll probably be getting platelets either tomorrow or Friday becuase they are starting to drop which is strange becuase they were only going up for a day or two but we knew they would be droping with this chemo. Cami-thanks for signing the guestbook...I miss you and Lizann!
Kelly- I've made more "ownership" for you!! Your going to be weighed down by it all soon!! Hope to see you real soon but out of the hospital!
Much Love,
Chassity
Monday, June 28, 2004 4:32 PM CDT
Hello,
Today I started my first round of "office chemo." It wasnt really too long of a stay. Tomorrow Im only getting one chemo so it will be an even shorter stay. I didnt really get sick or anything....Im definatly liking it better the chemo at the hospital. Also since its low dose, my counts shouldnt drop much but we'll see how that goes since I dont seem to like to follow the rules. I went to visit my grandparents and aunts and uncles and cousins this past weekend and it was lots of fun. I really enjoyed the little getaway. I will update later this week when things change a little....as of now its just plane old chemo all week.
Much Love,
Chassity
Thursday, June 24, 2004 1:33 PM CDT
Hi All,
Today was a quick day at the office. They type and crossed me for 2 units of blood and a unit of platelets tomorrow so we will be pulling an all-dayer. My platelets have been low for some time now but should be going up soon, Im not sure why my blood count was low though. Then, next week I will have my first round of "office chemo" instead of being addmitted for it. It will be baby doses though to make sure my heart can handle it from the last round. This means I will be at the office everyday ALLday long. They will send me home on hydration also. Then they will do tests on my heart to make sure all goes well. 1 step closer to transplant though.
Much Love,
Chassity
P.S.- Yes Chris, I still remember you all! lol! Hopefully we can get together soon.........
Monday, June 21, 2004 7:57 PM CDT
Hi everyone!
I had an appointment today and had to have a platelet transfusion becuase my platelet count was only 13. Then, I got my monthly antobiotic. It was kind of a long day. After that we went to a fundraiser my mom's company had set up for me. It was fun, my brother got to play a couple rounds of pool. As of now, I am having a round of chemotheropy next week and then in late July, my stem cell transplant. I am feeling pretty good though...my counts were all good except for those platelets but they are good now! While everyone is just getting out of school, I am starting back up again....my teacher comes July 2nd and by then I should have all my 9th grade finshed and be able to pass. Lots of work untill then. I have a Thursday appt. and will update after that.
Much Love,
Chassity
Friday, June 18, 2004 2:07 PM CDT
Hello Everyone!
We are finally back home! It feels good too. It was good to have a home cooked meal instead of hospital food since me and mom have been living off of it for about the last month! We havent really done anything exciting since we've been home but maybe the weekend will be more eventful....we thought about going out of town but the docs want me to stay close by just in case. I have an appointment at the office for Monday and I will update after that.
Much Love,
Chassity
Wednesday, June 16, 2004 3:28 PM CDT
hi!!
Im back to the Hem/Onc floor!!! I am so happy to be back over here and Im breaking free and going home tomorrow. I just have to have an Ecko in the morning and then I can go home. My blood pressure has been excelent since. I will update you all later.
Much Love,
Chassity
Monday, June 14, 2004 7:20 PM CDT
Hi Everyone, Chass here.....
I am still in the PICU but doing very good. My blood pressure is excelent and I'm off of the BP meds. Besides some antibotics and the TPN(IV food) I am off of all my meds. Also Im eating well so they are taking me off of the TPN in the morning and its very possible that they are sending me to Hem/Onc again tomorrow sometime. I am soooo happy. It is too quiet over here for me but the nurses are great. I miss the Hem/Onc nurses though...even though they all come to visit me daily! They just cant live without me. I've been keeping up on my gossip even though I am trapped in this bed, my lines are too short and attatched to the wall not a pole so I cant get up and walk which is no fun. Im starting to get sore from all this laying. My grandma and her freind came to visit me for the day which was a nice change. They brought me neat goodies which have been occupying me well. Hopefully my next update will be from the Hem/Onc side!!
Congratulations to Charawn and family on the new addition...little Jalen Hunter. She finally popped!
Much Love,
Chassity
Wednesday, June 9, 2004 4:34 PM CDT
Hello everyone, I guess your all wondering why we haven't updated this page. Well you all know how chass loves going to the hospital so she can see all her nurses and friends there. Well thats where we've been for the last week. We came in last wednesday because she had mouth sores real bad and she wanted her morphine. Then she decided to get a small fever, which means she had an infection. So they started giving her antibotics to clear the infection but then it lowered her blood pressure and raised her heart rate. So then they had to move her over to Pediatric ICU. We've been her ever since cause she is on heart medicine. But you would never think anything was wrong with her cause shes still her old bubbly self. We will be going back to our regular floor on friday and hopefully we'll get out of here soon after that. We're both ready to go home since we haven't been there much in the last month. I will try to keep this updated more often than we have. Don't forget to sign her page, she loves reading them. Till next time....
Sunday, May 30, 2004 9:07 PM CDT
Hello everyone, sorry I haven't updated this page sooner but I went into the hospital on monday to start chemo and didn't get released till friday. It was a rough chemo, making me very sick in the stomach. I'm slowly recovering at home and hope to be feeling better real soon. We haven't really done anything this weekend but just hang around the house. I have to go to the doctors on tuesday for blood counts and I will probably have to get blood or platelet transfusion. I will update this page after that. Hope everyone has a good holiday weekend. Till next time...
Monday, May 24, 2004 8:01 PM CDT
Hi everyone
The picnic yesterday was soo much fun. The Cummiskeys and us were the last ones to leave...we were there even when the food was gone! We all had a great time even though it was really hot. It was really nice to see all my office freinds outside of the office. I was really glad to see Laura and her family again!
I was addmitted into the hospital today for 4 days of chemo. I cant wait until tomorrow becuase Kelly will be here and I have been waiting sooo long to see her. Also Ashleigh and Penny came to visit me today. I just got done eating dinner and now I think I am going to go to bed...Im sleepy from the meds. Take care, Talk to ya tomorrow!!
Much Love,
Chassity
Saturday, May 22, 2004 2:24 PM CDT
Hi Everyone,
Sorry I havent updated in so long. The plane ride home was really nice. It was just me, mom, and this attorney. They fed us lunch which was yummy and we could watch tv and stuff too. It was a really nice plane with leather seats and a couch too. Its good to be home and with my family again.
Yesterday I had and appointment at the clinic and my counts are really good! They want to addmit me on Monday for chemo. The tests I had run in NY show that the chemo is working and there is barely any cancer cells in me anymore, also my bone marrow is clean. I am so happy. I still have to do transplant though...just to be safe.
Today we celebrated my brothers 14th birthday. Its really on Tuesday but like I said I will be in the hospital. We went to Red Lobster for dinner...his choice. (a good one too!) Then we took him clothes shopping at Old Navy. I also got an outfit..hehe! We all had lots of fun. And tomorrow me and mom are going to the hem/onc picnic. Its going to be lots of fun! I hope to see everyone there.....I wish Ayman and Aula could go. Then we could be the "lawn chair people" instead of "couch people"...right Aula. We really miss you two!
I'll let you all know how it went tomorrow!
Much Love,
Chassity
P.S.- Justin and Renee- We miss you guys!
Wednesday, May 19, 2004 12:52 AM CDT
Sorry it has been a while since I updated. I was discharged from the hospital on Tuesday. I was really happy to get out. It wasnt too bad there though..my freind Justin was also in for surgery so we visited then and vice versa. Yesterday we had a checkup at the clinic. They said my counts were slowly dropping but at that point I didnt need any transfusions. The rest of the time we have spent at the Ronald Macdonald House becuase it's too hard for me to walk anywhere. I am still in quit a bit of pain but I'm taking it easy and the pain meds help a little. We are fyling home tomorrow. A car is picking us up here in the morning at 10am and taking us to the airport. Corperate Angels asked us if we wanted to be interviewed by CNN on a private plane ride home. Of course we said yes! But now they are not sure if CNN can make it. Its not that big of a deal to us though...there are always other flights. But they are still flying us in a private plane and serving us lunch. I really excited to be coming home. I miss my family and freinds in Va. I will miss Justin and Renee from here though...but we will probably be seeing them over the summer. Mom is at the store right now...I'm too sore to go anywhere, then today we (well...mom) has to clean our room real good and wash the blankets and sheets becuase we have to clean it ourselves before we leave. And actually she just walked in with lunch so I will update when I get home tomorrow to Virginia.
Much Love,
Chassity
Sunday, May 16, 2004 1:34 PM CDT
Hello Freinds and Family,
I'm sorry I didnt write yesterday but I lost track of time. Well, yesterday I walked up and down the halls 4 times so today my goal is 5. So far I've only walked twice but I still have time. I got washed up today...not quit a bath since there arent any tubs here. Even though I am really sore around my insision, they took my off of the morphine and are giving my oral pain medication. I am still practicing breathing deep in the breathing machine and coughing every so often. my xrays of my chest are looking better today...not so much fluid in the lungs. Mom just left to the Ronald MacDonald House to wash up some clothes and get showered. I get really lonely when she leaves. Right now I am just sitting here waiting for lunch which I might add is soooo much better here then at Fairfax!! Also there is a parents menu for the room. And the food is actually good! Well I am going to go for my third walk right now and I will let you know how I am tomorrow.
Much Love,
Chassity
Friday, May 14, 2004 3:36 PM CDT
Hi everyone!
I've been doing pretty good after my surgery. They finally let me drink and eat soft foods. I havent really eaten anything beucase I'm really swollen and so I feel full. I am still in the POU...it's a step down from PICU. I think I like it better over here though...the rooms are bigger and the nurses are pretty nice. I am doing really well though....I walked once yesterday and so far twice today. I am on a constant morphine drip, I can get it every 6 minutes- it really seems to be helping. Right now they are making me sit up in a chair for 45 minutes then I can get back in bed. They keep making me cough and use my breathing machine....and they both really hurt but the morphinr helps some.
Well, they said I will probably be out of here early next week. Hopefully I will see you all then!! Ayman- I hope your enjoying your time home! Ashleigh- I hope you feel better!!! :>)
Much Love,
Chassity
Thursday, May 13, 2004 4:05PM est
Hello All, Chassity is doing really good today. Shes on morphine for the pain, and we all know how she like her morphine button. :) They had to give her benadryl because she was itching from the morphine so shes asleep now. She has already got out of bed and was sitting in the chair. Of course she waited till I left to do that. When she wakes up we're going to get her up and walk a little. But over all shes doing great with this surgery. Shes on a liguid diet for now. But shes just happy to drink something. I will have her update this page tomorrow....till then.
Dr.Perdahl, Chass has been taking deep breathes and using her spirometer regularly. She really misses everyone there at the office.
Penny, thanks for the last email, you are so good at keeping us informed with everything.
Ayman, I'm so happy you get to go home(whenever that is):) Maybe chass will come visit you when shes feeling better.
Wednesday, May 12, 2004 11:23 AM CDT
Chassity went into the surgery room around 11AM. it takes about an hour to get her hooked up to everything before they start the surgery. Its 12:30 now and someone just came out to tell me that they already done the bone marrows. So their ready to start the surgery now. Its going to be a long wait. The nurse will let me know every 2 hrs what is going on and hows shes doing. But I we keep this updated as much as possible. I'll be back soon.
Update#2-The nurse just came out at 3:00 and said they are still working on her and will give another update around 4:30. I guess NO news is good news. I'm just sitting here waiting and very tired cause we didn't get hardly any sleep last night. She was really tired and nervous so she was looking forward to be put to sleep. Boy I wish they give me something too.:) I'll update again as soon as I hear something else.
Final Update-Its 8:00PM and chass is in her room and doing great. Everything went good. They got out the tumor by the her kidney and the place that was in her chest was a double esophocus (however you spell it). it was not cancer- Thank god. She was in surgery for 6 hours but the results are so great. shes a little sore but she has a morphine drip, so shes feeling no pain. Shes aware of whats going on and talks alittle but shes still out of it somewhat. Thanks for all the messages and prayers. I will continue to update everyday until she can do it herself.
P.S. Lori, please email me to let me know how Allie is doing. I thought about her all day. Hope she is feeling better.
Penny, Don't forget to email me too. We love reading your emails.
Tuesday, May 11, 2004 1:46 PM CDT
We finally went sightseeing today! It was a lot of fun. First we went on a fairy over to Liberty Island. The Statue of Liberty was really cool and big, but the first thing mom said about it was, "wow it needs cleaned!"...leave it to her. We walked around the island for a while then got back on the fairy to go over to Ellis Island. We walked around there and then got BACK on the fairy and went back to Battery Park. From there we walked to where the Twin Towers used to be. There wasnt really much to look at there though. By then we were exhuasted from all the walking so we came home. WE CONQUERED THE SUBWAY! And later tonight there is a BBQ here at the Ronald Macdonald House.
Oh and if anybody is wondering, my freind Justing did just fine in his surgery yesterday. Speaking of surgeries....TOMORROW IS MY BIG DAY!! Wish me lots of luck. I am a little..or maybe a lot nervous but they say the surgeons here are the best for Neuroblastoma in the WORLD!!! So, I know I will be ok.
CONGRATULATIONS AYMAN FOR BEING KICKED OUT OF THE HOSPITAL TOMORROW. IM GLAD YOUR DOING WELL!!
Hopefully to see everyone in 10 days or so! Mom will update later tomorrow to let you know how the surgery went.
Much Love,
Chassity
Monday, May 10, 2004 1:41 PM CDT
Hi Everyone,
Well, today I met my surgeon, Dr. LaQuaglia. He is nice. My surgery will be on Wed. at 9:30. It was a very confusing appointment...first they tried telling me that they were going to make the cut on my left upper back and go to my chest which was weird becuase my tumor is in the right side of my abdomin. Well we learned that the tumor there has disappeared except for a very small peice possibly scar tissue. But now there is a spot that showed up in my chest from the scans. It is maybe cancerous or maybe a double asophagus. But, either way, they want to remove it now because it can be a good place for the cancer to go to when I'm older. So finally the cut is going to be just above my previous scar on my right side and they will be able to remove both peices from my abdomin and my chest. Now I am more confident about it all.
We finally met some people here. A freind, Justin who I wish very much luck today in his surgery. And his mom and dad who are waiting very patiently...and Granny. Justin's getting the remainder of his leg amputated today but I know he will be just fine...he's really strong and possitive...and pretty funny.
Me and mom are just spending the rest of the day pretty much taking all the new info in....relaxing....but I will get back to you tomorrow!
Much Love,
Chassity
P.S.- Allie and Lori- Dr. LaQuaglia says hi and is glad you are doing pretty well....and that you are winning horse shows!!!
Sunday, May 9, 2004 2:09 PM CDT
HAPPY MOTHERS DAY!!!!
It was supposed to rain today so we stayed home again but guess what?...no rain! Oh well...we are definatly doing something tomorrow...rain or not, we have unbrellas. We wont be able to sleep in tomorrow becuase I have an appointment with my new sergeon in the morning. And Allie & Lori...we will tell them you both say hi! I will let you all know how everything goes tomorrow!
Untill then...bye
Much Love,
Chassity
Sunday, May 9, 2004 2:09 PM CDT
HAPPY MOTHERS DAY!!!!
It was supposed to rain today so we stayed home again but guess what?...no rain! Oh well...we are definatly doing something tomorrow...rain or not, we have unbrellas. We wont be able to sleep in tomorrow becuase I have an appointment with my new sergeon in the morning. And Allie & Lori...we will tell them you both say hi! I will let you all know how everything goes tomorrow!
Untill then...bye
Much Love,
Chassity
Saturday, May 8, 2004 6:59 PM CDT
Hi Everyone,
We didnt really do much today again. The weather is supposed to be rainy for a few days so we just stay close by. We did go grocery shopping and out to dinner. Mostly we're just hanging out here. Its getting pretty boring...its like being stuck in a hotel room on vacation but without the vacation part. Hopefully tomorrow will be better. I will talk to you all tomorrow!
Much Love,
Chassity
Friday, May 7, 2004 8:14 PM CDT
Hello Everyone!,
We did absolutly nothing today! We sat around here and relaxed mostly. Mom did some laundry and I read all day. So far I've been reading a book a day. There was a BBQ today..hotdogs and hamburgers, it was good to have reagular food instead of fast food. It is supposed to rain here tomorrow so we will probably stay in. Its starting to get lonely here, not knowing anybody and everything. People seen to kind of stick to there selves..nothing like Fairfax.....there even if you wanted to, you couldnt stick to yourself!! I miss everybody!!! :)
Much Love,
Chassity
Thursday, May 6, 2004 3:36 PM CDT
Hi All,
We explored today! And it was A LOT of walking!! We walked to Central Park and visited the zoo there. It's a small zoo but it was cute. The monkies were funny. My legs are so sore from all the walking. I have never seen so many taxis in my life-we should have taken one! The buildings are so tall...At the park there were those sketch artists and I was watching them sketch peoples pictures and they INSISTED on drawing me. They were $60 but they gave us a discount...becuase I'm special..hahaha. It's really good..it looks just like me.
Last night for Cinco de Mayo there were Spanish people here at the Ronald Macdonald House singing spanish songs...like you see on TV in the resturants...it was funny. They gave out those HUGE hats...it was neat. There are Always activites here..its pretty cool.
Until tomorrows adventures,
Chassity
Wednesday, May 5, 2004 2:25 PM CDT
Hi everyone!!
I had to get up early this morning to get to my 8 o'clock appointment with Dr. Cheung. She was really nice, I liked her too, but I miss all my old doctors. They said my surgery has been moved to next Wednsday. Then I got to go see the teen room. It was awsome. They have a computer with internet and a big screen TV with Play Station. It was really nice, so was the kids play room.
After all that, I had to wait wait wait in a waiting room to get all my scans. First, I had to drink a alot of this stuff to dye my insides. I had to have a CT scan which wasnt too long but the MIBG took 2 HOURS!! I slept thru it though. We dont have any appointments untill Monday so we are going to enjoy the rest of this week. I'm sleepy from getting up early so I'm going to go rest now....I'll tell you tomorrow all the fun we have, even though the walking part it tiring.
Much Love,
Chassity
P.S.- NY has the prettiest dogs...they are EVERYWHERE!!!
Tuesday, May 4, 2004 2:49 PM CDT
Hey!! I am in New York right now!! I LOVED flying!! It was really neat, mom on the other hand didnt care much for it. The buildings are so tall here. I met my doctor, Dr.Kushner today and he was really nice and funny...he thought I was funny too. I had to swallow 7 drops of this really salty tasting stuff that was not good at all!
The Ronald MacDonald House is pretty cool. They have toys, playrooms, a teen room, an arcade (and you dont need coins to work it!), a computer room, and this patio thing. They took a lot of blood today becuase they have to run many tests. The day hospital is cool too....we had to sit in the new patient waiting roon at first though.
We are really tired from getting up so early so are going to take a nap and then go out for dinner!! Yummm....
Much Love,
Chassity
P.S.- Kelly, there is an extra bed in the room if you change your mind....just kidding!!
And hang in there Ayman and Aula..you are in our prayers and thoughts!! Oh yeah and we MISS YOU!!!!!
Monday, May 3, 2004 7:23 PM CDT
Hi!! I had a long day at the office. My platelets were only 19 so they had to transfuse 1 unit. Also I got 2 units of blood so I will be all ready to leave bright and early in the morning to catch my plane to New York!!! It was pretty fun at the office even though we miss Ayman and Aula being there on the couch with us. I hung out with Lauren but slept most of the time from the benadryl for my platelets. Laura Cottle and her family were there! Even though I only woke up a few minutes to say hi I was very happy to see them. I wish Laura luck at her new house!! I am a little nervous about the plane ride but everyone says I will love it! We are not totally sure about the computer situation for NYC so we will be trying to update this page as soon as possible.
P.S.- Hi Ashleigh..long time no see. You should set up a website too!! Good luck Ayman...and Aula!!!
Much Love,
Chassity
Friday, April 30, 2004 12:55 AM CDT
Hi! I had a doctor's appointment today. I didnt have to have any transfusions. My platelets were 25...I will probably have to get some on Monday. They want me to be ready for New York...I'm leaving Tuesday!!
Much Love,
Chassity
Thursday, April 29, 2004 9:47 PM CDT
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