History

Journal History

Monday, April 24, 2006 7:26 PM CDT

Amanda has been doing really well healh wise.
I'm starting to think that her immune system
problem is NOT a problem anymore.
She has been spending lots of time with her friends especially her best friend. She had 5 sleep overs during April vacation and is turning 11 May 12th.

THe bad news is that her feet have been really bothering her
during figure skating and have gotten progressively worse.
She's going to need physical therapy. She is still trying to skate and has 2 competitions coming up, but I'm thinking of having her withdraw from them. I already withdrew her from her club's annual show. She was sad, but understood that it wouldn't work out since most seeions she ends p taking off her skates and sitting on the bench with her feet (in tights) on the ice.

She still plays soccer also and this doesn't seem to bother her feet all that much, so at least she can still do that.

Saturday, March 4, 2006 8:13 PM CST

Where do I begin?
Sorry that it's been so long.
Amanda has been doing really well.
She has been having a great year. This is her last year in elementary school, next year she'll be in 6th grade and junior high.

We went to Florida again over Christmas. Just like last year both her and her brother got the flu, but she held off until the day before we were leaving which was Christmas. We went to Sanibel Island then Naples and had a great time.

She has been skating alot and was in a competition recently and got a Silver medal in Pre Preliminary. She is going to in a show in a few weeks and this is her first solo in this particular show, so she is really excited.

Over February Vacation, she was very busy socializing with her friends. She spent the whole entire vacation either at a friends house, doing something with friends, or having a friend over at our house.

Sunday, November 13, 2005 9:36 AM CST

Sunday, November 13, 2005 9:20 AM CST
Lots of news.
An Evening with Champions went very well.
Amanda skated her best, no falls.....
She met and reconnected with lots of skaters.
Right when we walked in, the first person we saw was
Paul Wylie. Her said "Hi Amanda" and she said
"Hi Paul" cery non-chalantly. Nick and I thought it was so
funny that they are on a first name basis now.
The show was spectacular! Ekaterina Goordieva skated great
and so did her usband Illia and daughter Daria. Last year, Amanda was in the locker room with the "local skaters", but this year, she was the only local skater, so she was in the
women's locker room with all of the pro's. She thought this was so cool.
She went to 5th grade camp. Unfortunately, after 1 day, we got a phone call to come get her because she had fever of 102. She was so upset to miss it. She just ended up with a cold, but this is the way her immune system is, every
illness starts ot with A high fever.
There were many articles in the newspaper about EWC and a producer for the show 3 wishes googled for a press release on a figure skater and called me. He also e-mailed me. He told me that he wanted a figure skater
for their Christmas special and he found Amanda. I first had him checked out before I would talk to him. He told me their was a very good chance for her to get her wish, but he needed more information to give to the higher ups. He called Amanda's skating coaches and had them change her music for copyright issues. I hesitated to have him ask Amanda her wish before it was definite, but he told me it was necessary. She wished for a room makeover in the attic for her and her brother. He called CN 8 who filmed An Evening with Champions an got the tape of her skating. He told us that he would come to the Boston area (where we live) to film the show, then fly her to Colorado to skate live when they air the Christmas show. She was so excited. Last Thursday, that producer called me and told me that they decided to go in a different direction, They had 30 kids to choose from and they did not pick her. If I had known that they had 30 kids to choose from, I would have never let him talk to her. She was really depressed. She said that it was the only thing that made her feel better after she got sent home from camp was the Three Wishes Show thing.
She has since bounced back of course, but I felt really bad that I let the producer talk to Amanda.
She just passed her pre-preliminary tests Friday. This is for skating and she is very excited!

Friday, October 7, 2005 7:26 PM CDT

Here is one of the articles written about An Evening with Champions. I have deleted her last name because I have gotten some strange e-mails from wacko's and don't want to give out too much information.

Ten-year Amanda once again has been invited to skate in "An Evening with Champions" skating show on Oct. 15.

She was diagnosed with cancer when she was three years old and became a Jimmy Fund patient. Today she is cancer free and an avid figure skater.

She first skated unassisted at the 1998 An Evening with Champions Skate with the Champions event. She met Sarah Hughes, Paul Wylie, and Timothy Goebal and got to skate with them. She was soon skating on her own and has been figure skating ever since.

An Evening with Champions is an annual figure skating exhibition that benefits the Jimmy Fund at Dana-Farber Cancer Institute, an institution devoted to the research and and treatment of cancer in children and adults. Over the past 35 years, the show has been extremely successful, raising over $2 million. Each year, Paul Wylie (1992 Olympic Silver Medalist) and numerous other Olympic national and local stars join for a wonderful slate of performances at Harvard's Bright Hockey Arena in Cambridge, Massachusetts. The Haydenettes, Ilia Kulik and Katerina Gordeeva will be among the all-star cast.

According to Devon Petersmeyer, the public relations director for the charity, Amanda's participation in the event acts as an inspiration to families still struggling against the incurable disease.

"It is so inspirational to have someone like Amanda in the show because she is living proof you can beat this disease. It's a great thing for the Jimmy Fund patients and their families to see. She's wonderful," Petersmeyer remarked.

"Last year we raised about $30,000 and we're hoping to raise much more this year," Petersmeyer added.

Amanda will be skating on Saturday only.

For more information or to purchase tickets call (617) 493-8172 or www.ANEVENINGWITHCHAMPIONS.org

Friday, September 16, 2005 8:14 PM CDT

Here is a link to an article about Amanda in An Evening with Champions:
http://www.townonline.com/arlington/schoolSports/view.bg?articleid=339749

Amanda has been once again ivited to Skate at Evening
with Champions. She is so excited.

She had her Jimmy fund appointment a few weeks ago.
Her NP suggested seeing an ENT because of the many cases of Strep that she has had. She hates going to the clinic, but I can tell that she is gettin older because she didn't put up as big of fight as last year. Since she is so terrified of a blood test from her arm, they did a finger ne using a razor like thing because they needed lots of blood.....Ouch!!!!

She started school and is loving it. Her teacher is on maternity for a month, so she has a sub who she loves who also happens to be my friend's sister.

Friday, July 29, 2005 8:43 PM CDT

Amanda got Strep a day and a half before going to Hole In
The Wall Gang Camp. I got her to the doctor and on those antibiotics quick so she would still be able to go
Her bad belly aches are back. It's weird because she was
getting them last summer also, but they went away in the fall. Luckily I have medicine to give her, so it's been tolerable.
Anyway, she bounced back quickly and had the best time ever at camp. She made some great new friends and had amazingly, awesome councelors. Two of them, are figure skaters! One of her favorite things that hey did at camp was have attend a concert, which was really a bunch of bands playing at the camp. She met the junior American Idol.
They also scuba dived in the pool with real scuba gear ad dressed up like clowns with all of the hair and makeup.
She was happy to see me when I arrived to pick her up, but when we got home, she had tears in her eyes and told me that she wished she was back in camp.

Thursday, July 7, 2005 5:34 AM CDT

Sorry that it has been so long.
Amanda has been having a great summer and doing really well.
She will be going o Hole in The Wall Gang Camp soon. Her friend Jacqueline is going again also.
She hurt her foot and was on crutches for a while, but it
is much better.
She is taking swimming lessons, tennis lessons and of course
figure skating. Her and her brother are loving tennis!

Friday, May 27, 2005 3:31 PM CDT

Amanda has been doing really well.
Those antibiotics did their job.
Skating has been winding down a little.
She has a new program with music from Chicago.
Her coaches want her to perfect the program
before she competes. When she does, it will
be in Open Competitions instead of basic skills.
These are much more competitive.
She is keeping busy with soccer and going to
all of her brother's baseball games. Her best friends's
brother is on Nick's team so they get to hang out together
all the time. I never sign her up for baseball even though
she wants to play. I just think that it will be too
much with skating and soccer.
We're looking forward to a relaxing weekend.
All of our caringbridge friend are always in our thoughts.

Friday, April 15, 2005 7:51 PM CDT

Amanda is feeling better. She was wearing a garbage bag when I pciked her up from girlscouts. Apparantly, they used it as a smock to paint the banner for the parade Monday.
I went to her concert today. She missed the one Tuesday because of Strep even though in her opinion, she missed it because I was so mean for not letting her go! They did very well. It is the select town chorus and they sounded excellent as usual. It's supposed to be an excellent weekend and we are looking forward to the great weather.

Amanda had a little over a week of
feeling great. The show went ver well
both nights. She didn't fall and had a great
time.
We just found out today that she has Strep again.
Her pediatrician gave her stronger Amoxicillan
and she will take it for 30 days.
Hopefully this will make the Strep go away
and not come back!!!
She is in Select chorus and will not be able to go
to the first Spring concert, but hopefully she'll
be able to sing in the Friday Spring concert.

Friday, April 1, 2005 9:59 AM CST

Amanda is feeling much better,
This time it was a virus and not Strep.
I have Strep!!!! I also am losing my voice.
This happens every year when Amanda is in her
2 shows which are two weeks apart with practices every
night!
Amanda got top and bottom retainers today. She has had 6 teeth pulled and needs the retainers to make sure
her molars don't fill in the spaces while waiting
for her teeth to grow in.
She has four adult teeth that are missing permanantly.
It took me quite a while to understand why we were pulling
teeth out if she is missing 4 adult teeth.
Her skating show is tonight and tommorow night.
It has been a lot of work. I am on the board of directors
at both of her figure skating club.
Shannon, Thanks for all of your visits.
I never update, because practically nobody else signs her
book and when your computer was down, I'm not sure if
anyone read the updates! :)
I do agree that they are pretty boring. :) LOL

Monday, March 28, 2005 7:37 PM CST

Amanda is sick again.
She got Strep 2 weeks ago, took the antibiotics
for ten days, and has a fever and a sore throat
again.
I haven't taken her to the doctor yet.
It's just a low fever.
She is in a skating show this weekend and is supposed
to have practice every day. She didn't go today
and probably won't be able to go tomorrow.
She felt great yesterday and had a good Easter.
She brought home her report card Friday.
She got all A's and B's, in fact mostly A's.
She does well in school.

Sunday, January 23, 2005 6:25 AM CST

We just got about two feet of snow.
It is so beautiful! The kids were out last night
with the next store neighbors playing in it until 11:00 which is much later than I usually let them stay out.
Since hockey, CCD, and skating our canceled, I made an exception.
Amanda has been doing well. She was sick with a fever and a stomach bug Monday. She was really dissapointed because she
couldn't go to a competition Monday that she had trained hard for. I paid a late fee and got her in another one February 5th, so that made her feel a little better.
She was moaning and saying "why can't I be normal" to which
I responded "this is normal, everybody gets stomach bugs".
We hardly ever talk about her being a Cancer survivor or even the fact that she has a weak immune system, but It's often on her mind (and mine). I know that we are so lucky and the immune system thing is very minor.
I am looking forward to relaxing today. Sundays are usually the busiest day with all of the sports.
Go Patrotiots!!!!

Saturday, January 8, 2005 8:59 PM CST

We went to Florida over the vacation. It was a disaster! We left on the Wednesday before Christmas.The kids had the flu and Nicholas vomited the whole plane trip there and contiued to barf around the clock until Friday. DH stayed at the hotel with him during Hoop de do Revue. I was feeling quite sick at Hoop de do myself and couldn't eat the famous Chicken. Amanda had only a "mild case" of the flu because she had gotten her flu shot, but still had a cough, fever and no appetite for a week.
We went to Epcot Friday, but Nicholas didn't want to go on any rides because he still felt sick. It wasn't crowded at all. Saturday (Christmas) was the worst. Nick finally felt better. We got to Magic Kingdom and it was a little cold. It started pouring and never stopped. It was totally crowded. We waited in line for an hour for Stitch which was an awful ride. My kids begged to leave. The parade was canceled and we left. The hotel was really nice which really saved us since we spent so much time there.
Naples was much better. Even though the temperature was high 60's low 70's, it was cloudy and windy and too cold to swim. We still had fun. We stayed at my Mom's and went minature golfing, saw an amazing sunset at the beach, and did other fun toristy things. Just because this trip to Disney didn't go that well, I am already mentally planning our next trip.

Friday, December 3, 2004 7:27 PM CST

Happy Holidays to all of our Caringbridge friends.
Amanda has been doing well.
Her stomach has been much better with the right combinations of medications.
We will be spending the holidays in Disney and at
my Mom's place in Naples.

Friday, October 15, 2004 2:16 PM CDT

Please visit our friend Connor
He and his family could really use your support. Connor
became an angel on November 1rst. Please pray for his family.

Amanda has a fever and feels real bad!!
She did get her flu shot yesterday. The pedi said that he wanted to give it to her before they ran out. I'm not
sure why they don't ususally give it to people if you have a fever.

Evening with Champions went well. I'm glad that it was last weekend. We met another survivor family Thursday at Eliot House. Amanda and the other survivor, Andrew, hit it off right away. Our speeches were short and sweet. Amanda's doctor attended. He is so awesome!

Saturday, we went to the Jimmy Fund family skate with the Champions. All of the skaters were so nice especially Steve Cousins, Timothy Goebel and Ben Agosto. We met some great Jimmy Fund families also. Amanda was the 2nd skater at the
actual Evening with Champions show. She skated perfectly. She was very pleased. Her and Timothy Goebel were interviewed by CN8 and it will air October 24th at 8:00pm. This is just a local channel. PBS no longer tapes the show.
Everything went so well and I'm relieved that it's over.

Thursday September 23, 2004

Amanda had an x-ray 2 weeks ago and
an Ultrasound yesterday.
She needed to drink 8 oz of water before the Ultrasound. She told me that drinking water in the morning really hurts her belly. I told her just to drink it for the test. I went back in the house to get something and when I came back out, she had put the bottle of water behind my tire so when I backed up, I would run it over. Where did I get her?
The onlt thing that they both showed is that she is very backed up.
She has been on Miralax and Prilosec for
2 weeks. She thinks it is helping, but continues to have belly aches.
Evening with Champions is October 9th and she is speaking at Harvard October 7th. She is getting really excited about it.

Amanda had a great time at camp.
She loved archery, horseback riding and meeting new friends.
She did continue to have the tummy problems.
When I picked her up they told me that she was
a frequent flyer at the OK Coral.
She is very excited to skate with An Evening with Champions She is most excited about meeting the skaters and getting "back stage passes". She is going to skate to You Raise me up and is working hard on the program and her speech for the Gala Banquet.
She continues to have her morning tummy troubles. She went for her Jimmy Fund checkup. They did some blood tests (which she freaked out about as usual) and everything was fine. She grew 2 inches and gained 4 pounds this year. She is 9 years old, 49 inches and 58 pounds.I just brought her to her pedi for more tests. After these results, we should continue with a gastro doctor at Children's. School starts Thursday and I was hoping this would be resolved. She is taking Zantac 75 twice a day and thinks that it is helping a little.
She is very excited about starting fourth grade.

Tuesday, August 10, 2004 6:44 PM CDT

Amanda doesn't know this yet, because she
is still in camp, but she is going to be so
excited when she finds out that she has been
invited to be a skater in An Evening with the Champions
which is a Jimmy Fund skating Fundraiser. She was also asked to be a speaker at The Opening Gala Banquet.
We attended this event in both 1997 and 1998 as well as a couple later on. They had a family skate and in 1997 Amanda got to skate with Sarah Hughes and Timothy Goebel. Timothy was so nice to Amanda and carried her around the rink. She was 3 years old. Next time I looked, Amanda was skating unassisted, Tim had taught her to skate!
This is the event's 35th annivesary and Timothy Goebel will be coming back. He hadn't skated in the evemnt since 98.
She is going to be thrilled.

She hasn't been feeling that great. She's been getting really bad belly aches and some vomitting. The doctor at camp thinks she may be dairy intolerent.
It started before she went tocamp and I hope that we figure
what's going on with her.
She has another dentist appointment Thurday for a filling and the other tooth that they wanted to pull.

Saturday, July 24, 2004 3:37 PM CDT

Wednesday update:

Amanda had 3 of the 4 teeth pulled today. She is 48 inches and 57 pounds and that is too small to give enough Novacaine to pull 4. She actually needs 8 all together, so we will do this in 3 trips. It went fairly well. She had Nitrous Oxide. When she heard the cracking tooth noise when it was coming out, she asked what the noise was. Her dentist told her that it was her tooth saying goodbye.
When we were walking out the door, she said "that was fun". I took the opportunity to tell her, that if she was that brave getting 3 teeth pulled, then her appointment at the Jimmy Fund will be a breeze. She responded that there was no way that she was going there!
Now that the Novacaine has worn off and she is in pain, she told me that she is not having any more teeth pulled.

Amanda has had a great summer so far.

She goes to the boat club practically every day and
has made a lot of new friends.
She had her friend Jacqueline to the club yesterday.
Jacqueline is the A.L.L. survivor who she will
be going to Hole in the Wall Gang Camp with.
If you would like to write to her at camp
just e-mail me for the address.

She will have her 4 teetth pulled this Wednesday.
I will let you know how it goes.
We are due to go for her check-up at The Jimmy Fund Clinic.
She is terrified of going, so I'll probaly bring my DH
(Nick) along.

Friday, June 18, 2004 4:45 AM CDT

IG Shot Update Saturday June 19

Like I said we ate at Friendly's, and unfortunately got more that we bargained for especially our buts!
We all had to get the shots.
Yes, my kids were freaking out. Nick had a field trip and I went. We got back at 2:00 and by then they were out of the shot. Since Amanda has a "Dysfunctional Immune System" we were told that she had to get the IG shot that day which was 13 days after one of the times that we went to Friendly's. We went to a different hospital and were told that they couldn't give kids the shot. My husband finally convinced them that they could and they really treated us well. our buts are feeling much better today.

Yikes!!!
We ate at Friendly's last Saturday night.
It is very close to our house.
The kids went there for icecream about a week ago.
It turns out, an employee has been tested positive
for Hepatitis A. Anyone who ate there needs to get
treated with IG (imune Globulin) today.
Amanda had heard about this before I got her at school Wednesday. She is thinking that it's going to be like
the all day transfusions of IG that she got regularly 2 years ago. It gave her real bad headaches that lasted 3 days.... I am just wondering how effective this will be for her considering that she got sick even though she was treated with IG. I made a lot of phone calls, but all
the doctors offices that I called, told me to call a different one of Amanda's doctors.

The good news is that we bought a powerboat.It is a 24 foot Maxum that sleeps six. This is our third boat. The last one that we had we sold when Amanda was sick, so we are all very excited to be boaters. We are in a Yacht Club, but we joined a kid friendly boat club to keep the boat in. The kids love it there already. They have lots of activities.

Tuesday, June 15, 2004 7:01 PM CDT

Johnny (my step-dad) is out of the hospital.
He most likely will need to have open heart surgery
to repair the other side.
Amanda's gymnastic recital went well.
I actually wasn't shocked and horrified like she
was hoping. She did well. Figure skating is the sport that she is serious about. All of the other sports that she participates in are casual. She plays soccer, floor hockey, does Gymnastics and plays violin.
Today was her Spring concert. She was supposed to wear a white shirt and black pants, but my rebel girl wore a white shirt and a Hawian print skort. She told me that she wanted to stand out. She is the shortest girl in her class (there are 2 boys shorter than her. They walk in by height so I never have any trouble finding her.

Friday, June 11, 2004 11:58 AM CDT

Amanda has been better and fever free
since last Sunday.

She has been participating in all of the
activities during her last 2 weeks of school.
Her last day is Monday the 21rst.
She and her best friend Jacqueline who is an
A.L.L. survivor will be going to Hole in The Wall Gang
Camp again in August. They are really looking forward to that.
Saturday, my step-dad had a major heart attack.
My Mom and step-dad live downstairs in our 2 family home.
They were in Maine when it happened and Johnny
is still in the hospital. They didn't go to the hospital for over 10 hours after and it caused extensive muscle damage. The doctors said that we are lucky that he lived through it.
Amanda is very close to him and instead of Papa or strp-grandfather she calls him her Johnny.]
Sunday, she will be in her Gymnastics recital and said
that I will be shocked and horrified with her bars routine.

Thursday, June 3, 2004 5:22 AM CDT

Update later Friday:
Amanda had a great time at Field Day.
I got to watch her. She told me she felt ok and went back to class when it was over. I left and went to visit my friend who just had a new baby. I was five minutes from the hopital when the phone rang. It was the school nurse telling me that Amanda had a fever and to come get her. The school has been very supportive and works with us reagarding all of Amanda's fevers. They bend the don't come to school within 24 hours of having a fever. Of course if she was contagious, I would keep her home.
Upadate Friday June 4th:

Amanda is going to school and field day.
She got the antibiotic and she is a little feeling better. She is VERY cranky and her throat hurts a lot, but she doesn't have Strep.

Amanda is sick again.
She has her usual Amanda thing, a fever.....
We had gone to the ER May 15th the last time that she was
sick. They gave her Bactrum. I had told them that she needs stronger antibiotics or she will get it back again in 2 weeks. I hate to always be right! :0(
My Mom is going to take her to the peditrician. She really wants to be better for Field Day which she missed last year because she was sick. Field Day is Friday so it's not looking too good, but maybe if she goes to the pediatrian, gets a better Antibiotic, she will be better.
I didn't take her yesterday because it's her regular Pediatrician's Day off and I didn't want to end up at the ER again like last time.
Cross your fingers that she might be able to go to school for Field Day Friday.

Wednesday, May 19, 2004 7:44 PM CDT

Update: Sunday May 23rd.

Amanda did well today at the competition. She got another gold medal.
She also earned her freeskate 2 badge. Now she is working on Freeskate 3. I used to be really impressed with kids that were that far. She already got her 8 basic skills badges, now she earned 2 freeskates. She works hard, but she really enjoys it.
Last week was a crazy week.
I visited the pediatrician Mother's day, Amanda's birthday,
Friday, then Saturday.
It started with Nicholas not being able to breath and it turns out that he has Asthma.
He got a fever and we returned Wednesday.
Amanda got a very high fever. Her regulaer Pedi has been out so we saw someone who doesn't know her. The other pedi that she sees is out on maternity leave. She didn't like the way Amanda looked, so she told us to come back the next day which was Saturday. We returned Saturday and amanda had a high fever and really bad stomach pains.
The pediatrician sent us to the ER for possible Appendicitis. I have mentioned Amanda's fear on needles. She refused to cooperate, but in the end finally did and was really brave.
They ended up sending us home with most likely a UTI and dehydration.
They called Monday to tell me that she doesn't have a UTI!
Who knows, but she is feeling a lot better and they told me to keep her on the antibiotic.
Other than that, not much new. :)

Friday, May 7, 2004 7:56 AM CDT

Amanda's birthday party is tomorrow.
She is having 22 of her "closest" friends from school.
She is having it at a place, because I just don't know what I would do with all of those kids if it rained.

She went to the Orthodontist Friday and Dentist last Friday.
As I mentioned before, she has a doctor/shot phobia.
She did much better. She didn't freak out before we got there. She does need 4 teeth pulled and has another chemo cavity (baby tooth). I insisted on having Nitrous Oxide for the cavity. She won't come back if they just use Novacaine.
She is missing 4 adult teeth according to her x-ray. The Orthodontist told me that he needed to think about her case for a while and he will call me back when he comes up with the plan.

She has a competition May 23rd. This will be the highest level that she has competed in. For anyone that knows skating. She is doing a program with a Scatch Spin, Half Flip, and Waltz jump from 3 back crossovers with other things thrown in there 2. As long as she does her best, I will be happy.

Monday, April 19, 2004 7:36 PM CDT

Happy Patriot's Day. Monday April 19th.
Updated more below!

Not much to update.
Our very busy March went great without a hitch.
This month is just as busy. Amanda's immune
system has been cooperating quite well.
I don't want to jinx her, but it's been unbelievable.
She has figure skating still plus soccer, swimming and
Brownies.
I just feel so lucky that things are going so well.
It is so painful to read the other cb pages of
the many kids doing poorly and suffering so much.
It is so unfair. :(

Monday update:
I knew that I would jinx her. I came home from work and she has a fever of 103! I'm sure it's just a virus because her brother had it last week. She's not happy at all since it's vacation and her brother was sick with a fever the whole week. He was happy to miss school.

Friday, March 5, 2004 11:12 AM CST

Time to update!
Amanda and Nick are going to be so busy this month.
Amanda is in 2 skating shows. She is wearing one
of her costumes above. She is skating to "Fly Me too
the Moon". She did not like this costume. She tried to get out of it. Out of her 4 costumes for the 2 different shows, this is my favorite. The pants need major alterations. They are practically my size.
She has a violin concert coming up. She doesn't know what she is doing. Her class is on Monday and she has missed so many due to illnesses. She told me that the teacher is really strict. After being out 2 Mondays in a row, she told the teacher that she was a Cancer survivor, but the chemo
hurt her immune system. After the next Monday she missed the teacher asked her "are you okay dear", which I thought was nice. Amanda hates to tell people that she had Cancer, so I was surpised that she told the Violin teacher. She never told her skating coach. We are so lucky to be able to put it in the past.
I still worry, and pray for all of the other Caringbridge kids. If I was better at HTML, I would have links to their pages. If anyone wants to help me do this, let me know.
Thanks to Tori's friend Stephanie for reminding me how to make the links to our friend's pages. I will keep adding more as time permits.

Friday, February 20, 2004 6:39 AM CST

February Vacation has been fun.
We stayed with our neighbors who moved
2 hours away last summer.
The kids actually went to sleep even though
Amanda and the older girl
are famous for staying up all night.
We went skiing the next day. It was Amanda's
third time skiing, but she can ski very well.
I only fell once and that waas after jumping
off the lift. I was so busy chatting, I forgot to
dismount. :)
Tuesday, Amanda had a nasty stomach bug. I had to
work and already paid for the kids going to their
vacation club. Then I had to also pay for a babysitter.
Oh well, what can you do?
She is better today and we will probably go ice skating after. She is sleeping in.

Friday, February 6, 2004 12:32 AM CST

Amanda is doing great this week.
She loved watching the Patriot's win the Superbowl.
We are continuing to pray for all the other caingbridge
children. It is just heartbreaking to read all of the suffering that our children have to endure. Why?
We know that we are very fortunate and never forget
that lesson that we learned about gratitude.

Thursday, January 15, 2004 7:14 PM CST

Amanda is doing well.
She missed some school due to a "mild case of the flu". She
did get her flu shot.
She has a skating competition Monday.
There is no school tomorrow due to a wind chill of 30 below zero.

Even though she is only 8, she is getting more and more like a teenager every day.
She takes a shower and blow dries her hair every morning. She won't let her brother come in her room. She had some bumps on her chin the other day and put makeup on it because she told me that they were "zits" even though they were really dry skin bumps. :)

Tuesday Update: Amanda did her best at her skating competion and that's what's most important. She got a Gold medal!
Their were 3 flights. Her and her friend were worried that they would have to compete against eachother, but they were in 2 different flights and they both got the Gold! You go girls!!!
I will post pictures soon.

Saturday 1/24
Amanda is sick again. She has a fever...
Well, I won't be spending 6 hours in a freezing cold rink this weekend.

Tuesday, November 4, 2003 8:48 PM CST

Amanda had a great time at Hole in the Wall Gang camp Reunion weekend. Friday before she left, she was a little sad to miss "trick or treating", but when we arrived at camp to bring her home Sunday she told me that she was so glad that she went to camp.
They celebrated Halloween Saturday instead. She met new friends and learned some new songs which she keeps signing over and over.
Fall is one of the seasons that she usually gets the sickest because of her dysfunctional immune system, but even though she has missed 6 days of school so far due to illness, she hasn't gotten anything terrible like Pneumonia. She did get a couple of viruses. Two weeks sgo she missed 4 days of school.
She is still figure skating. She is going to skate to Circle of Life at her exhibition at the end of Novemeber and is so excited about it.

Saturday, October 4, 2003 7:51 PM CDT

I've been waiting to have some time to post our "stinky feet" story, and I guess I have time now.
Last time we went in for her checkup, we were told to watch for signs of early puberty.
Well, I let Amanda go to school without socks for a couple of days and I noticed there was a horrible odor in my house. I realized that her feet were the culprit and I told her to wear socks from now on. The damage had been done and her feet were still stinking. Paranoia set in and I started thinking that this must be a sign of "early puberty". I have been known to be the denial queen and my husband is the overacting king.I ended up calling the oncologist and she didn't laugh at me, she just gave me some helpful hints on dealing with foot odor.
A couple of days later, Amanda showed me a rash on her arm and I told her it was fine. She put her hands on her hips and said "Mom I don't get it, I've had this rash for 2 weeks and you won't take me to the doctor, but when I had stinky feet, you call the hospital". It was too funny.
Other than that nothing new.
She likes her teacher this year, missed a couple of days because of sores in her throat, and has been very busy with her figure skating, soccer, auditions, and friends.
She is going to a camp reunion on Halloween. She will miss trick or treating, but she told me it would be ok this year and she doesn't really like candy anyway.
I think about all our little Caring Bridge friends a lot and keep you in my prayers.

Tuesday, August 26, 2003 8:24 PM CDT

I can't believe it's been over a month since I've updated.
We have been so busy traveling.
We just got back from an amazing trip to New York City.
It was a girls only weekend with Amanda, her auntie Nancy
(my sister) and me.
We went from Friday-Sunday and did everything.
the highlight was seeing Mama Mia. Amanda loved it.
She said it was even better than Annie.
We also toured The Empire State Building, Central Park Zoo and Carosel, Rockerfeller Center while they were filming the Today Show, St. Patrick Cathedral, Statue of Liberty from Battery Park and still had time to shop til we dropped.
Amanda recently had her check-up at The Jimmy Fund Clinic.
Everything was fine, but it didn't go very well. Having the IVIG last year was so tramatic for her that she has a hospital/nurse/needle phobia. I had to practically drag her out of the house to go. When it was time for her blood test, she screamed and wouldn't cooperate. It took a very long time and she screamed so loud. Her oncologist recommeneded that we do IVIG again. She said maybe just one time before the fall and one time before the Spring.
Amanda got Pneumonia twice last fall and non-stop Strep and viruses in the Spring. Amanda definately doesn't want to do that. Her Onc. also suspects an over-active Thyroid, but didn't want to do another blood test. She also wants us to see an immunologist again.
Amanda told me on the way out the door of the place that saved her life (The Jimmy Fund) "Mom, I am never going back to that place again." I definately won't bring her back without my husband. She usually stays a little more calmer when he is there.
I know how fortunate we are that she had done so well, but it is so hard to have a girl that is terrified of doctors, nurses, and hospitals.
We decided to respect Amanda's wishes right now and skip the IVIG before the fall, but if she gets sick all fall, we're going to have to listen to what they recommend.
To end on a good note, she has been Cancer free for over 5 years and we are very grateful.

Saturday, July 19, 2003 5:52 AM CDT

Camp Update!
Monday, July 21, 2003

Amanda is home!
She lost 2 teeth while at camp. They gave her an award for most teeth lost at camp. I took that first picture the day I picked her up. She is wearing the same shirt that she slept in. She is exhausted and had an amazing time.

I have missed Amanda so much this week! I received a letter 2 days ago that I have read and reread about 100 times. Here is what she wrote:
I just wanted to tell you that I miss you and I am fine! I am having an awesome wonderful time here at Hole in the Wall Gang Camp! Everybody is nice here, I mean everybody. Noone is mean! Guess what else? The counselors said that at least one day this week we can go places in our PJ's!!!!
Love you very much!
Amanda
P.S. Nicholas, I have not sent you the pictures yet.

Obviously she is having fun. I glad I packed her favorite pajamas which are a red silk short set with monkeys all over them. Pretty awesome letter coming from a 8 year old!

Saturday, June 21, 2003 9:40 AM CDT

Happy Summer!
Amanda's last day of school was Thursday.
She was sick again the week before and missed 2 days, but felt sick up until yesterday.
She will be attending The Hole in The Wall Gang Camp
in July. My husband felt she was too young last year, and I
think I have talked him into it this year.
Now, I'm going to have to talk myself into her being gone for eight days.
It's going to be difficult.

Monday, May 26, 2003 2:16 PM CDT

Amanda was in a skating competition last Sunday and won a gold medal. She was very proud.
They filmed the commercial last Monday. It was a very long day, but Amanda and Nicholas had so much fun.
They both had there own little scene that they were the principal and were extras in a bunch of other scenes.
She has continued to get viruses and infection all Spring,
but we're hoping once it gets warmer, she'll be better.

Thursday, May 8, 2003 8:09 PM CDT

I just want to update quickly because I'm so tired.
Amanda got her monthly infection over vacation (Strep).
I got it also. At least she didn't miss more school.
Amanda and Nicholas finally booked a commercial.
It's not a big deal thing, but they are very excited.
Amanda , me and my Mom had an audition for Quaker Oatmeal. The audition was fun. It was by invitaion only, but they had an open call for the same thing 2 days ago.They told me the line went around the building. We were there for about an hour. This means probably 500 families auditioned, but we did it just for fun and to see what they do in the audition room.
On the way home, Amanda told me she was freezing.I suspected a fever, so I called the doctor then rushed her there before he closed because her First Communion was the next day and also her birthday party. It turns out she has Strep again. She just finished her antibiotic last Saturday for Strep over April vacation. I aksed her in the car before we got to the Pediatrician's if she could try not to freak out and scare the little kids. She replied "Mom, I've been through a lot, I've had a hard life" :( I felt so bad for her. She always terrified to go to the doctor. The lab was just about to do a blood test, but the Dr. called and told her to send us back. Amanda started freaking out thinking that the doctor had to do a butterfly instead of a finger stick. He really called us back to tell us that she didn't need a blood test because she has Strep. Then she apologized to all of the nurses for freaking out and hugged them all.
The good news is at least I got her in there so quick because if I had waited, she would be that much worse on her First Communion/birthday party with the family. She actually seemed fine.
Amanda was in a skating competition and won a gold medal. She was very proud.

Sunday, March 30, 2003 8:11 PM CST

Amanda ended up with Pneumonia again. She missed another 4 days of school. I told the school last year that I didn't want to get one of those letters from the truent officer stating that your child has missed too much school. My friend got one when her daughter was on treatment for A.L.L.
Both of my kids have been trading viruses. This always seems to happen in the spring.

Amanda placed third in her skating competition. She got to stand on the podium and get a big medal. She was happpy.

Amanda's Nana is coming home from Florida this week. She has been there for 4 months and we're looking forward to seeing her.

This has been a tough month for many of my online friends, and I have kept you in my prayers your children in my heart.
Sad update, my dear friend patty's son Sean has relapsed for the 4th time. Please pray for them :( Sean

Wednesday, February 26, 2003 8:38 PM CST

I have been waiting to tell you something interesting before I updated, but nothing is really new. Amanda has been doing great. Even though she was diagnosed with immune system dysfunction last year, she has had a great winter. We made the right desicion about not doing the IVIG for now.
She has had more auditions and I haven't heard anything yet.
She has been getting more serious with her figure skating. She has her first competition March 31rst. Seeing that we're at the rink for 2 hours on Saturdays, I am also taking figure skating lessons and we're both on the same badge. :)
Chris (Gooch's Mom) inspired me to take an HTML course and I finally put a picture on the front without her assistance.
There are two young adults both relapsed with Rhabdo that need your prayers. They are Sean (Patty's son) Sean and Sabrina (Cathy's daughter) Sabrina
I am heartbroken to tell you that Sabrina became an angel on March 17th. :(

Friday, January 17, 2003 at 08:56 PM (CST)

Thanks so much to the people who "adopted" Amanda.
Amanda has been doing great. She has gotten fevers a few times, but she was only sick a couple days at a time,
so I think it might have been normal kids stuff.

Amanda had another audition in December and once again, no callback. She has taken some drama workshops and has really enjoyed them. She isn't in the least bit discouraged, so we'll keep trying.

Today she went to the dentist. She has had 3 cavaties on her baby teeth because of the chemo. She got a sealant today. Last month she had to get a filling and novacaine. This was the 2nd time she had this. The first time she handled it well, but last time it hurt her and she cried on and off the whole hour.
She told me that she refused to go again. I used my great advocate skills that I have developed from her Cancer days and called the office. I explained that it went really bad last time and Amanda was scared to come back. They put me on the phone with an assistant who was so nice. We camwe up with a plan which I told Amanda. She eneded up only having to get a sealant today, but I told her that if she need a filling, the dentist will make it easier in the future. I knew my advocate skills would come in handy.

Well, thanks for checking in and now that she is "adopted", we'll update more often.

Saturday, October 12, 2002 at 05:22 PM (CDT)

Okay here is the latest.
We went in September for Amanda's sixth month checkup and everything was fine.
Three weeks later, Amanda got a fever and it stayed for 10 days. We went to the pediatrician 4 times and every time we went he was barking up the wrong tree. Her sedrate was high and he thought her liver felt enlarged so he kept giving her tests.
He finally gave her an antibiotic Thursday, but told me that we had to take her to see her Oncologist. They did a chest x-ray and it turns out she has Pneumonia.
The Oncologist told me we should really think about IVIG again, but I want to wait since Amanda hates it and is happier get sick all the time than having to sprend all day in the clinic getting a painful IV.
Amanda didn't get the part of Sean Penn's daughter in Mystic River which wasn't a big suprise.
She was chosen to audition for a Dora The Explorer commercial. It went well, but every agency picked about 8 kids to audition so there was about 100 kids audtioning and only 2 kids will make it. She loved the audition and left with a big smile, so it was worth taking her.

Saturday, September 07, 2002 at 03:00 PM (CDT)

Sorry that I haven't updated for so long.
The good news is, there is nothing to update.
Amanda had a great summer. She got Brochitis in June,
but that was it. She has been healthy other than that.
She's been doing so well that I am delaying making
an Immunology appointment. All those tests
and treatment was really hard emotionally on Amanda. She doesn't remember her Cancer treatments, but she certainly
remembers her IVIG treatments last winter.
To get her mind off of things and to make my Mom happy(LOL),
I signed her with a modeling agency (actually, they signed her).
Her first audition is for a major Clint Eastwood film called Mystic River. The agency sent her to audition to be
Sean Penn's daughter.
She is very excited about it, but I really don't expect her to get the part. It is so competetive and she doesn't have any experience.
It really helped her to get her mind off the Cancer and IVIG treatments which was the goal.
I have been keeping all those children still fighting in my heart and prayers.
We may be out of the woods, but we'll never forget the ather Cancer Warriors.

Sunday, June 16, 2002 at 07:39 AM (CDT)

We ended every other week of IVIG March 15th. It's great to not have to go to Dana Farber, however without the IVIG Amanda is back to her constant fevers and virus's.
She has missed so much school.
I called the pricipal this week to ask if we could waive the "fever free for 24 hours rule" so she wouldn't miss so much school. Last week she was spiking at about 2:00 am, then she would be fine all day. He said we support whatever it takes to make things easier in us. He asked me what kind of Tylenol does she like, then told me that he was running out to get it now. We are lucky to have such a supportive school.
Amanda would much rather get sick often then get the IVIG which also made her feel sick from all the side effects.I feel the same way as her, but my family tells me that I should consult her immunologists and see what they say.

Monday, April 15, 2002 at 07:21 PM (CDT)

Thanks for visiting our page. Please sign the guest book if you have the time. This site has been visited quite a few times, but nobody ever signs Amanda's guestbook. No pressure however.
Amanda finished her 3 month trial of every 2 weeks IVIG.
That was the good news.
We followed up with yet another different immunologist. The first one left for back surgery, and the second one was on paternity leave. The new one had Amnda's 1 foot thick file in front of him. We were there to evaluate Amanda and tell us what the next step was. When we walked in he said "so, tell me about Amanda". Nick was quite upset that nobody is keeping up with her case and expressed it quite loudly.
The plan is that since it appeared the IVIG helped, to wait and see how Amanda does off the IVIG, then go back in 6 months. Maybe by then Immunologist #1 will be back.
The bad news is that 2 weeks later, she got Coxsackie Virus once again.
I was quite discouraged, then I remembered going through tretment and thinking "just let her be okay, if we have to deal with side effects of chemo in the future, then we'll deal with them".
This is a side effect from the chemo and things could be a lot worse.
To end on a good note, she has a few mouth sores, but other than that Amanda has been healthy for the past 2 weeks.

Monday, April 15, 2002 at 07:21 PM (CDT)

Saturday, January 05, 2002 at 03:08 PM (CST)

We have had 4 IVIG treatments.
Amanda was very sick after the last three.
She got extreme headaches, vomitting, fevers, and itchy.
I asked some other Moms for advice and got some very helpful information.
Amanda got the Gamma yesterday. The premedicated her with IV Zofran and Benedryl. They did the IVIG a lot slower. We were at the clinic from 9-5. So far, Amanda is feeling so much better than the previous three times.
Thanks so much to the Moms that helped. You know who you are.

Sunday, October 07, 2001 at 05:11 PM (CDT)

Amanda is having an immune system problem.
Her IGg is low.
She hasn't developed antibodies to her vaccines.
They are still testing her. They will decide if she needs IVIG transfusions which will be done every 3 weeks.

Thursday, May 17, 2001 at 01:46 PM (CDT)

Every year a special group of friends, family, and co-workers get together and participate in the Jimmy Fund Walk. Our Team, "Team Amanda" has raised over $33,000
for Cancer research. This years walk will be held on September 30th. If you would like more information, feel free to E-mail me.

Thursday, May 17, 2001 at 08:06 AM (CDT)

Amanda was diagnosed with Rhabdomyosarcoma on February 24, 1997.
Her protocol was 43 weeks of VAC.
We are delighted to tell you that she is still in remmision today.
She has been off treatment for over three years.
She is 6 years old, has a 13 year old sister and a 4 year old brother.
She has almost completed Kindergarten.

Thursday, May 17, 2001 at 08:06 AM (CDT)

Wednesday, May 16, 2001 at 11:18 AM (CDT)

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