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Katelin Shirl Mason 
KATELIN IS DOING FABULOUS!
8-27-08 MRI SHOWS STABLE TUMOR
WE ARE NOW GOING TO MRI EVERY 6 MONTHS!
AFTER 5 YEARS OF EVERY 3 MONTHS...
WE ARE SO READY FOR THIS BREAK!
SHE WANTED TO GET THIS BEAR AND NAMED HER
ALYSSA - THE SIX MONTHS BEAR
3-12-08 MRI shows STABLE TUMOR
5-06 to 3-12-08 STABLE TUMOR
2-16-06 MRI showed Slight Growth
Welcome to Katelin's Web Page. Two months after her 5th birthday on June 27, 2003 Katelin was diagnosed with a 3cm Pilocytic Astrocytoma in the Optic Chiasm/Hypothalamus region of her brain. This is a slow growing tumor however given its location and today's surgical technology it is considered inoperable. Fortunately, at this time she has not experienced any long term side effects.
On August 7, 2003 Katelin began 18 months of chemotherapy (Carboplatin, Vincristine, Temodar).
On March 20, 2004 she began taking Protocel an alternative medicine that offers great hope.
On July 20, 2004 we discovered her Port-a-cath line had detached and was inside her heart chamber. We removed the line that day and then had surgery on July 29,2004 to replace her Port-a-cath.
Feb 12, 2005 at 6pm she took her last chemo pill!!!
March 8, 2006 began 2nd round of chemotherapy
Temodar - 200mg/mm2
October 18, 2006 switched chemo to TPCV Protocol
Thioguanine, Procarbazine, CCNU, vincristine
Eight 6 week cycles scheduled to end Sept '07
Oct 26, 2006 Port-a-cath placed by Dr. Harrison.
This web site was created to keep her family and friends updated on her progress.
Journal
Thursday, August 28, 2008 12:24 AM CDT Yesterday's MRI brought wonderful news - that a year after we ended chemotherapy the tumor is stable! Her eyesight is stable with no left peripheral vision in both eyes but strong right vision and 20/20 central vision. Her color vision is at 90% which is great given the damage to her optic nerves. She flew through her neurological exam and even did a tap dance and juggling for the folks at the clinic. When Dr. Nicholson walked out he stuck his head back in looked me in the eyes and with a big smile said "she looks great - she really looks great". I have to agree - we have no medical issues to speak of and she's excited about school starting next week.
I can't believe the summer is truly over and am so looking forward to the structured schedule of the school year. Katelin had a new math tutor this summer - she teaches this unique multi-sensory way of doing math facts which only took 3 hours and Katelin had her multiplication facts down after 2+ years of struggling. I think she was 85% there and this was just what she needed to solidify it for her. Then they went on to long division and in 2 hours she had that down with the multiplication check..again struggled all last year with this new partial quotient method and in 2 hours is doing 3 place number long division. She told me that it felt so good to finally get it! So we'll continue with Sonja though the school year helping with math homework and I truly believe she will get Katelin to cross over from hating math and getting a headache every time she had to do it - to enjoying math. This woman is phenomenal so if any of you are in need for a multi sensory approach to multiplication facts give me a call and we'll hook you up. I told her she better prepare to expand her operation because this is awesome.
So we've conquered reading difficulties - 3 years of tutoring with orton gillingham program and she is reading at/above grade level and enjoying it. I never thought I'd see the day but she's ready 5 books this summer from the goddess's of the moon series and hopes to get one more in before tuesday.
last year she made great strides in getting her wonderful creative ideas onto paper - with her poetry, literature groups and participation on the school newspaper. this year they focus heavy on writing so I hope to see even more progress on that front.
Which leads us to spelling...her last area of struggle. So talking with the school they have another tutor whom comes to the school who could help her with her spelling. So I decided why not (poor kate) and signed her up to work with this tutor on spelling.
We'll see how the school year unfolds as right now she'll have 5.5 hours of dance (jazz, tap, ballet, flexibility) 3 hours at the stables for a 1 hour horseback riding lesson, 2 hours with the math tutor and 1-2 hours with the spelling tutor, 2 hours of newspaper and 1 hour of flute lessons all in a week. then she'll have her 1 hour with Amy and bi-weekly acupuncture appointments. It's a pretty heavy load so we'll see how it unfolds.
As you can see by the photo - Katelin had gone red head again. The last time was halloween 2006 when she was fiona and the temp dye lasted 9 months. She's loved it and begged me to do it again. I said after she'd been off chemo a year she could do it so true to my word we did it again two weeks ago. She loves it - I will be glad when it dies down a little. She's filling out - no longer the chemo waif she was...she's grown several inches and 10 lbs which puts her at 4'6" and 65 lbs. In the home page picture we were on our way to get her wires put back on after the MRI so that is why the braces have no wires. Today we got the wires replaced and she got headgear - poor thing. So we'll have to fit in 12 hours a day of head gear with everything else we are doing. Her teeth look great with her eye teeth repositioned it makes a world of difference. the amazing thing is she seldom complains about her teeth hurting - we give her the motrin before each visit and she has a little discomfort but not worth mentioning. So I guess her pain tolerance is higher than I suspected given how often she cries from headaches and bodyaches. Makes me wonder how much pain she has to endure on an ongoing basis.
Nicole's remodeling is done - the kitchen is marvelous! the bathrooms are done and it all just makes the house look so different than when I lived in it. With all the walls painted and new kitchen/bathroom/carpets its not my house anymore its their house. Which is wonderful. She's planning the housewarming party for Sept 19/20th.
I finally finished my landscaping design and with both my neighbors contracted with a local landscape contractor to do all three years. they started this week and will be done 21 days from when they started. It's amazing the transformation and I can't wait to have a backyard which is right off my main floor and an extension of our living area.
So 2008 was our year of recovery - I have spent more in this year financially than I have except for the year Nicole graduated from college and got married. Which turned out to be the year Katelin was diagnosed. But things are settling down with the blinds, heatpump and now landscaping done at the new house and the major remodeling done at the old house. Now we are set to begin just living...and enjoying life.
I think that is it for now. I'm trying to decide what I do about this site given we are going to MRI's on a 6 month basis. I think I'm going to stop it. I might let Katelin start up a new site for her to journal in - using the new sites you can put in to get an auto alert when the author has updated an entry which I find helpful with those sites I keep track of. This site has been a life line for me over the past 5 years. Allowing me to reach out to those who care about us and keep them informed while not having to rehash it over and over again.
What I will do is start a new site before discontinuing this site so that I can notify you of the change.
That is it for now. thanks for your continued support we couldn't have made it this far without all of you.
Linda & Katelin
Read Journal History
Hospital Information: OHSU - Doernbecher
3181 SW Sam Jackson Park Road, DC10C
Portland, OR 97239
(503) 418-5150
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