January 30th

WOW what a party!!!!!!!! What an experience walking into the Plex last Friday night and seeing the number of people there to support us!!!! It certainly warms the heart to believe that we are part of the world's best community! Where do you start to thank people? A large thank you goes out to the organizers and those who worked at the event. A huge thank you for the great idea and all the hard work put into it. Thank you is not enough for those fine young gentlemen who put their hearts and soles out to Caitlyn when they shaved off their locks! That meant the world to Caitlyn, and now she no longer has a fear of going bald. "Why would I be scared now, there is at least 20 other kids in town that are bald!" Also a huge thank you to those who attended and/or donated, it certainly makes it easier to be down here and not worry about work and paying the bills, both at home and down here.
Now to Caitlyn. She ended up in Southampton hospital on Saturday until Sunday am with a seizure. The docs down here said they are not surprised that she seizured, her brain is "angry" with the radiation and the tumour. They have started her on another drug for the seizures that is causing her to be very sleepy but we have been assured that this will subside with time and we are presently trying to change the time of day that I give it to her til night time so the ill effects will be when she is sleeping.
Her spirits are still good and her first question after seizuring was, "I don't have to stop the radiation, do I?" The answer being no! So back to the grind stone yesterday with the radiation. She now has 7 in and 26 to go.
The chemo, really doesn't seem to be giving her any ill effects. She takes it at night and I guess if there is any ill effects, they are when she is sleeping.
She is just really tired and has now allotted a couple of hours per day for naps!!! Best medicine is a sleep!
Well better go and we will be back on later.
Thanks again and a huge community hug from the Cobeans

Rona

January 25

Hello there

This is Rona posting this time. Our internet connection has been very poor and Caitlyn has lost a few posting and is now a little frustrated. Apparently the strength of the signal decreases the higher up in the building. We are on the 20th floor and I just came up with a brillant idea of coming to the lobby. So far so good.

Everything is going well here. Caitlyn is feeling well, but a little tired! As Caitlyn said in one of the blogs that she lost that Radiation is like having an xray and Chemo is like taking Tylenol.

Radiation: 4 down and 29 to go. She had more headaches Monday and Tuesday but they told us to expect that. Yesterday and today, better though. I have posted a picture of her on the radiation table with her mask on that we took this morning.

Chemo: She takes it in pill form before bed at night. So far feels fine with it, but they also have her on some gooooood anti nausea pills. Thank god for a good drug plan as these meds are several thousands of dollars for a month.

Ronald McDonald house: no luck yet. Although we have moved up the waiting list and hopefully will be in next week some time. We are currently staying at the Days Hotel which is close by and has a very reasonable hospital rate. Though it will be nice when we are in the RM house and we can cook our own meals, the toaster oven in the room is just not cutting it.

Caitlyn has not been too bored this week. She has had several appointments and Julie, Ryan and Hayden came down on Tues night, for appointments at Sick Kids on Wed. For those who don't know the connection, Julie is Caitlyn's cousin and their son has numerous appointment and connections with Sick Kids.

Caitlyn has had some exciting experiences in TO this week. She rode in a cab and rode the subway today, which was extremely exciting. "Bruce County comes to the city!!!"

Caitlyn is so looking forward to the hockey game on Friday night, in fact she is currently napping with anticipation. Each time we talk to someone from home we are hearing that it is bigger and bigger! We are extremely overwhelmed with the generousity of our wonderful home town. There is definitely something to say about living in a small town and not a sole in the world will tell us any different.

We really want to thank everyone who has helped us out in any way since January 1st. It certainly makes it easier to deal with a medical problem like this.

Well thanks again, and we are looking forward to seeing everyone tomorrow night.

Thanks

Rona

January 22nd

Heyy everyone!! Today was the first day of treatments. It was a very long day a lot of things to do. I went for my radiation and it was at 10:15 but they werent expecting me to be coming til 4:00 but then they squeezed me in at like 11:30. So for the radiation they just take u into the room and put the blanket on u and then they give u the cute little cuddly bunny and then they put the movie on for u to watch (shrek 2) and then they put the mask on and then they just leave and u lay there for like 10 minutes and then they come in and then u leave and go home. (it is really boreing). Then we went to a bunch of little things we met this one doctor and we met this other lady who was doing another study (the forth one). Then we talked to other people and then my parents are also in another study about somthing to do to do with genetics so today my parents had to have a blood test today which made me very excited so i had to watch them get their blood tests! Then we had to do like a ton of other things that were really boring and then we finally went back to the hotel. Then we went down to the lobby then we ate supper and now i am sitting in my room and i think i am gonna go to the pool soon. Well i am feeling pretty normal. I havent taken the chemo medicine yet but i dont have to take it until i am ready to go to bed cuz it will make me sick maybe and it will also make me tired. Well i better go to the pool and then i will have to get back to take my pills. I am looking forward to seeing everyone on friday night and i cant wait!! Well i am going to go to the pool and i cant wait to see everyone but i gtg now!! If anyone has any questions about the radiation or the chemo just leave them in the comment box. I am also supposed to say hi to Breton and also to Mr. G-dawg lol breton.

In toronto:( January 18th

Heyy everyone!! Im back in toronto again but im just here for the night, i should be home around lunch tomorrow depending on the weather. I am just sitting on my bed, there is a helicopter going over our head right now getting ready to land and it is really loud. So today we just went to the hospital to talk to the doctor about my headaches but he said that they should be fine and we will still be starting radiation on monday and chemo (so they changed my meds and my headaches are a lot better). Today i was just supposed to go to see the doctor but then they decided it would be easier to do the blood work today rather then on monday so i had blood work that really hurt. Tomorrow i am just going over to st.michaels to get my cast off and talk to the doctor about how long i will have my walking cast on and then we should be on the way home as long as the roads are ok. So i hope to see everyone soon and i will be home for the weekend before heading back down here.
Caitlyn!
p.s. did i mention that i am extremely excited to be getting my cast off tomorrow and i can hear sirens now and i am scared lol better go

January 17th

Today I has been pretty normal just sat at home and did arts and crafts and went on the compueter and read magazines the whole day. I just had to go to southampton at around 8:00am today for blood work which was very painful because they needed to check my dilantin lavels since i have been so tired. I am coming to school tomorrow probably for the frirst three periods (math and english) and then i am going home and then heading to toronto to talk to the doctor on thursday about me being so tired (i think) and then i am going to stay at the hotel and then go to get my cast off in the morning and then i will be home. (if i am home early enough i am going to go to the vollyball tourney for a while). Then i will be home for the whole weekend and then i think we are going back on sunday night and i will have my first treatment on monday. I probably tell u the same things like everyday but i always forget what i told u so i tell u again. Mostly the only interesting thing that happened today was getting blood taken and it rele hurt and i am going to be getting blood work like once a week!well i have to go back to doing nothing since i am so busy!
byeexo
caitlyn

Yahhh! The blog works again!

I'm so happy now because I was trying to figure out my blog and it was being retarded and now it is working and i am extremely excited (can u notice?) So I am going down on friday to get my cast off and have the MRI just to make sure that nothing travelled down to my spine and then i will be coming home again on friday night. Then i will be going on either sunday night or monday morning to start treatments on monday. We are trying to stay at the ronald mcdonald house (and no emily u dont get free fries) but we probably wont be able to get in for a few days so we are going to probably stay at this place called the residence that is across from the hospital. I hope we only have to stay there for a little while there though. We will be home this weekend and then we will be home every weekend after that! Well i dont really have a lot of updates mostly just normal life for this week. I am coming to school for part of the day on thursday. Well i better go, if u have any questions that i havent answered just ask in the comment box! Thanks everyone and i appreciate all of the support from everyone!
Thanks everyone! Caitlyn!xo

At home again!! Jan.12th

I'm home again!!! Just got back on wednesday but then we had to go back down to Toronto again today:( for an MRI, a CT scan and to meet with the radiology oncologist (dont ask what that is they just do the radiology). So we got home on wednesday and we have to go down next friday for a MRI on my spine just to make sure that it didnt go down into my spine (even though they are pretty sure it didnt). Also on next friday I will be going to St.Michaels to get my cast of!!!:) Then we will be coming back home just to turn around and go back down to toronto on the monday to start the radiology and chemo treatments. For radiology it is just like an x-ray where u go in and the put the mask on your head and u just sit still for about 5 minutes (i no a bit of a challenge for me!) then i will go to the rondald mcdonald house (my new home for six weeks) and stay there. For the chemo i just have to take a pill each night so it is fairly easy!! I just want thank everyone for your support and i will get through this it is just a little bump in the road, there is no point sitting here crying about it since that wouldnt help anything! I want to thank everyone for everything that u have all done for my family and me and helping us throught this. Also i just want everyone to know that i feel like the exact same person and i think that i look like the same person.Thank u all for everything and continue to check my blog for updates, i will try to update it more often so u wont have to read so much at once!!

January 7

I got my IV out and my turban off my head the incision is about 10 cm long but they only shaved a small strip that long of my hair. I am free!!!!!
We went downstairs and got an Oreo sandwich and my parents got drumsticks. We then went outside for some fresh air but it was really cold so we only stayed out for a little while.
I think I am now going to go back to my room and sleep.
Talk later

January 6th

I got back to my room at 10:30. That is good because the other room was boring. Still my head doesn't hurt too much. Just the incision. I had a CAT scan of my head to check for swelling the lady that did it was from Ripley, I told her that our hockey team was playing Ripley today.
I have this awesome turban on my head. They couldn't find stickers in the Critical Care Unit so my mom drew flowers and my name on it with Sharpies. I got stickers when I got back to my room to put on my turban.
My mom and dad and me played Phase 10 which is a card game and even the day after surgery I kicked their butts.

January 5

Today is surgery day. Surgery was at 9:00 they biopsied it and sent it to the lab. We will know for sure on Monday or Tuesday. After the recovery room I went to the Critical Care Unit for the night. It was boring!!!! I was in a room with two babies. They didn't cry because they had breathing tubes in. This surgery didn't hurt as bad as my ankle surgery.
The guy that put me to sleep told me that the mask would smell like Canadian Tire and it did!!!!!!!

January 4th

Today I had my EEG they just hooked a bunch of wires to my head to see if I had a seizure on Monday or what that was. It doesn't look like a seizure to them, but they want to do a sleep deprived EEG next week, where I get to stay up all night and then they do it again when I am really tired.
The doctor told us that I am going to have surgery tomorrow, to do a biopsy but I need another MRI. It was at 11:30PM. I was tired and had to get up at 6:00 am to have a bath before surgery.
Still having no headaches and feeling perfectly fine.

January 3rd

Today we got here at sickkids at 12:30, feeling fine probably wouldn't even know anything was wrong. Basically just met the nurses and doctors and got into my room.