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KAITLYNS PAGE 
SPRING PICTURES
2008
Welcome to KAITLYN'S Web Page. It has been provided to keep people updated about Kaitlyn.
Feel free to sign our guestbook.
On February 2, 2004, Kaitlyns journey began. Kaitlyn had morning vomiting and/or dry heaves. We took her to a local doctor and he said it was acid reflux. We then took Kaitlyn to a Chiropractor on Feb.4th, thinking maybe she needed an adjustment after her fall off the (3RD) step in the basement. When that didn't help, I took her to Acute Care in Dubuque(this doctor was just as puzzled)on Feb 5th. On February 9th, I took Kaitlyn to Dubuque Pediatrics. This doctor did so many test and also was puzzled. Kaitlyn started vomiting more frequent and we knew we had to get her some help. The next day I took Kaitlyn back to Dubuque Pediatrics and Dr. Franzen looked at her from head to toe. He did urin, blood, and then ordered a test to be done on her stomach. After test, after test, and everything was turning up O.K. He then referred us to Iowa City on February 17th to the Pediatric Gastroenterology Clinic. Thinking it was only something was wrong with her stomach but a CT scan showed a mass on her brain stem.
Kaitlyn was diagnosed with a Choroid plexus papilloma with Rhabdoid features on the brain stem on February 17, 2004. On February 20th she underwent a 6 hour surgery to remove the tumor. She then started Chemo and Radiation on March 15,2004. She had 31 treatments. She then had a six week break. She then Started Maintance Chemo in June. She will have six treatments. They are once a month.
When Kaitlyn was first diagnosed with a mass on her brain stem, Al and I felt the walls of our life begin to crumble. To never again know the feeling of complete health of Kaitlyn. Still wondering, how is this going to effect her in the future.
Our eyes have been opened, time and time again, coutless people, family, friends, strangers, with genorosity, support and kindness beyond belief! What a wonderful community in which we live. Kathy Polfer(Kaitlyns aunt) and Jean Polfer (grandma) organized a benefit for Kaitlyn in May of 2004 at the KC Hall in Peosta. With many friends and family helping out that night. Thanks to all the businesses and individuals who donated to the event and everyone that attended. We are very greatful. There was also a benefit in Kaitlyns honor in September, 2004. Connie Gibbs mentioned us to the New Vienna Tractor Pullers Association at New Vienna. We cannot THANK YOU all enough!
Also, I cannot forget the people at ATP (where I work) they had many potlucks, donations and raffles.
We feel very fortunate to be at home these days and only going to Iowa City every couple months for MRI's, eye appointments, hearing and thyroid appointments.
We have felt more support and cared for in the last year and maybe NOW its our turn to give back, by giving blood, platelets, signing up for the bone marrow resistery, going to benefits, and raising money for cancer research.
Kaitlyn has several side affects from the chemo, radiation and surgery. These are the side affects Kaitlyn received from radiation-she has to take thyroid medication, she is on the medication Cortef because her adnernal glands wasn't making enough Cortisol, she will be on growth hormone shots soon. This is because the radiation affected the pituitary gland. In the future when she gets to the age of puberty, she will have more test, to see if she will have to be given estrogen. She also has small cateracts on both eyes. Kaitlyn has hearing loss (she has hearing aides) and this was because of chemo. When Kaitlyn gets really tired she is unable to focus her left eye. (rolls around) I blame this on surgery.
God sent to me an Angel
God sent to me an angel,
It had a broken wing.
I bent my head and wondered,
"How could God do such a thing?"
When I asked the father
Why He sent this child to me,
the answer was forthcoming,
He said, "Listen and you will see.
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy-
those with love to spare.
Sometimes I take them back again,
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and don't know what to do,
remember I am with you
Love is all I ask of you.
--Author Unknown
Bless this child, Lord
Lord, look down from heaven above
and touch this special child with love
Protect and guide this little one
till each and every day is done.
Remind us often, that its true:
This little life is a gift from you
A Miracle You've sent our way!
Lord, Bless this little child today.
This song by Sugarland reminds me of when Kaitlyn was on treatment. This goes out to all the survivors and all that has fought this terrible disease!!
STAND BACK UP
Go ahead and take your best shot/ Let'er rip, give it all you've got/I'm laid out on the floor, but I've been here before/I may stumble, yeah I might fall/Only human but aren't we all?/I might lose my way, but hear me when I say//I will stand back up/ You'll know just the moment when I've had enough/Sometimes I'm afraid, and I don't feel that tough/But I'll stand back up//I've been beaten up and bruised/I've been kicked right off my shoes/Been down on my knees more times than you'd believe/When the darkness tries to get me/There's a light that just won't let me/it might take my pride, and tears may fill my eyes/But I'll stand back up//I've weathered all these storms/ But I just turn them into wind, so I can fly/ What don't kill you makes you stronger/When I take my last breath/ That's when I'll just give up//So, go ahead to take your best shot/Let'er rip, give it all you've got/You might win this round, but you can't keep me down//'cause I'll stand back up/And you'll know just the moment when I've had enough/Sometimes I'm afraid, and I don't feel that tough/but I'll stand back up//You'll know just the moment when I've had enough/Sometimes I'm afraid, and I don't feel that tough/BUT I'LL STAND BACK UP
Journal
Saturday, January 10, 2009 11:52 AM CST Hi!!
Hope everyone had a very Merry Christmas and a Happy New year.
Kaitlyn is doing well. She is now in the 2nd grade. She only goes to Iowa City 6 months for MRI's . This should be her last year for them. She sees the endrocrine Dr. every 6 months. Kaitlyn has really shot up since her growth hormone therapy started. She now only has to see the eye Dr. once a year to watch those cataracts and the muscles in her eyes.
I started a new job in August 2008, at Bodine Electric in Peosta. It is closer to home. Which I like, Especially now in the winter!!!
This year we are planning on going to the Dance Marathon event in February, we are only going to make in on Friday evening though. Nicole wants to go and the next day she has volleyball game.
Nicole keeps us busy as she was in volleyball for school and now club volleyball. She is in W.D Kix dance team. She is in the 8th grade.
We went to Iowa City on January 8th, Kaitlyns port scar has been bothering her for a while. Her scar is raised up yet (and not flat) It has been 4 years since Kaitlyn had her port removed. I couldn't believe this would be bothering her for this long. I have had Drs look at it, but really wouldn't do anything about it. The Dr. in Iowa City said that we could try some steriod cream or he could do a surgery on it. Cut it back open and stich it back shut, but wouldn't guarantee that she wouldn't scar the same way. He said that the chest, elbow, and knees are places were it is harder to heal right. Kaitlyn is one of those people I guess. I think we are going to try the steriod cream first and if that doesn't work, they said they could probably work something out when she has her next MRI to do the surgery on the same day.
We found out on Thursday, January 8th on our way to Iowa City that Nicole has a cyst in her head. Dr. Kelchen from Medical Associates in Cascade informed me that it is not Cancer.
Nicole had been complaining about headaches 2 weeks after Thanksgiving. On December 8th, I took her to the chiropractor thinking her neck was out. She falls alot in volleyball. (Diving for that ball) Took her there for about 3 treatments. Wasn't helping the headaches. I took her to acute care-he didn't do anything. One Saturday afternoon Nicole and I went Christmas shopping and she said her head hurt so bad. On a scale of 1-10 she said it was an 8. So I took her to the emerency room at Mercy in Dubuque. They had her walk a straight line, balance test, etc. I had told them that her younger sister had a brain tumor 4 years ago. They were convinced that her neck was out or it was a migraine headache. The stundent Dr. said he would massage the head and neck and maybe that would relieve some of the pain. When he was done they gave her 2 Tylenol and sent us on our way. As time went on Nicole said she sometimes gets dizzy and her vision was blurred. So I made an appointment with the eye Dr. Nicole said she didn't think it was her eyes, but I took her anyways. The eye Dr. in Dyersville seen something so he sent us into Medical Associates in Dubuque. They found Drousen or calcuim deposits on her eye. He said that would not be causing her headaches. He said I should take her to our family Dr. So on Monday, January 5th, I took her to Medical Associates in Cascade. She said with Kaitlyns history it wouldn't hurt to do a MRI and some blood test to check white and red blood counts and to see if see was anemic (Spelling) So on Wednesday, January 7th I took her in for her MRI. Dr. Sheri Kelchen called me on Thursday, and said her blood counts were good and that there was a cyst in her head and that it was 6 cm. (about as big as a golf ball) She said she would forward everything to Iowa City to Dr. Menazes. He is the DR. that removed Kaitlyns brain tumor. Dr.Kelchen wasn't sure what they would do, she said sometimes they just watch them, drain the fluid or possible surgery. We checked with his clinic then that day to see if they had an appointment set up, but it will take Dr. Menazes 5-7 days to review her file. Please keep her in your prayers.
I will let you know what they decide.
"YOU HAVE TO BELIEVE
&LIVESTRONG
Joyce
Read Journal History
Hospital Information: Patient Room: HOME SWEET HOME Childrens Hospital of Iowa
200 Hawkins Dr.
Iowa City, IA 52242
319-356-2231
Links: www.youth development fund.org www.rhabdoidkids.com
hypo-pituitary
www.thehikefund
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