caitlyn@sickkids

I'm back

2009-09-15T19:52:00.000-07:00

Hello all

I have not been here for a long time, but after it was brought to my attention that there was a recent post on the blog and it made me aware that there are still people out there who are checking the blog and thinking of us.

We have had our first ever Relay for Life, like I mentioned in the last blog entry. It was a wonderful event and raised an enormous amount of money for the Canadian Cancer Society.

Well since the last posting, we have experienced Caitlyn's first "angelversary" on Aug 9th of this year. It was an interesting weekend. We spent Saturday (the 8th) with many visitors and calls. We had a party that night......the first ever "Live life to the Fullest Party". This was to celebrate Caitlyn's life. We decided that we did not want to curl up and feel bad for ourselves during this time, and that would be definitely not something that Caitlyn would do, so we had a party instead! It was a BBQ and of course it was drizzling rain all evening so we had 50 people crowded into our garage at one time. It was nice to see so many of our friends and share some laughter. Then on August 9 (Sunday) we started out by going to the cemetary to let off balloons and watch them as they travelled up and up. We then headed to a family picnic which helped fill the day. As the picnic ended, a very loud storm rolled in with very loud thunder and lightening! It was like a replay of the weather on the day that Caitlyn passed away. It was almost like Caitlyn was saying "hey everyone, don't forget me!"

Everything else in our lives are moving on also. Another school year has arrived and Bryanna is now in Grade 8 and loving it. Dylan has graduated from high school and has moved on to college. He started at Georgian College in Owen Sound in the Police Foundations program. He too seems to be loving it. I know that Caitlyn would be very proud of her brother right now. Jim and I are busy with work, and getting ready for another hockey season as they are both playing again this year.

For those of you who are still checking the blog, I WILL update more frequently!

Until next time!

The Cobeans

P.S. Please remember that September is Childhood Cancer Awareness Month! Wear gold to support!

2009-03-08T21:14:00.001-07:00

I am quite sure, everyone has thought that I am finished with the blog. But I am back! I took a break from the blog, as we got through some rough "firsts" but I am back on track now.
To update all, we are doing well here. We made it through our first Christmas, which was a little tough, but we made the best of it. We changed our Christmas tradition slightly, and included another candle on the middle of the Christmas table. It was a pillar candle with a pink bow tied around it (Caitlyn's favourite colour). It sat right beside our candle we have had out for the last 4 years which represents Jim's mom who was taken from us suddenly in 2005 with cancer. Dylan and his girlfriend surprised us at Christmas with a beautiful portrait of Caitlyn at grade 8 grad. It is wonderful and hangs in our living room now. Of course, Bryanna told me that I had only 2 minutes to cry and then I had to stop, so she was able to add the humour that her sister would have done.
Right after Christmas the girls hockey team from Caitlyn's high school had a memorial game in honour of her. It was great. The school was let out for the game and there was a wonderful turn out. The proceeds went to Brain Child, and POGO in memory of Caitlyn.
Then we had Caitlyn's 16th birthday on February 22nd. That was tough one, but again, we made it through it too. The 4 of us went to the cemetary (wading through the snow) and released 16 pink and purple helium balloons. It was emotional but worthwhile. We had many phonecalls, emails and notes from all to help us through the day.
But now, we are back to moving on. We are working now on the newest event to Saugeen Shores and helping with the Relay for Life that is being held on June 26th at the high school. It is going to be a wonderful event and we are all looking forward to it!! It is our way of keeping up Caitlyn's fight against this horrible disease and to help prevent another family having to go through this.
Until next time!!

Rona

2008-12-07T05:46:00.000-08:00

Hi there

Hope everyone is gearing up for Christmas, we are a little slower in preparing this year. I just can't seem to get into the mood but with all this snow outdoors, the mood is starting to come.

Well, last weekend our girls hockey teams in our town, hosted the Regional Silverstick hockey tournament. During the opening ceremonies on Friday night, they officially retired Caitlyn's hockey jersey and her number. It was a wonderful tribute to such a special girl. The opening ceremony ended with Bryanna, Caitlyn's sister leading all the girls in a "victory"lap around the ice and then the 4 of us dropped the puck for the game.

Jim and I had crests made for all the girls jerseys with grey angel wings and Caitlyn's number "10" on them. These have been sewn on the left chest of all the girls jerseys.

Jim and I, also had contructed this shadow box for the lobby of the arena. It has her jersey, her last hockey picture, a write up about her and the 2 trophies that she received throughout her hockey career for being the "Most Dedicated Player" 2 separate years.

Following the ceremony, one of Caityn's good friends showed us what she had created in memory of Caitlyn. This girl was a goalie on her hockey team for several years and now currently plays out of town. She had a new goalie helmet made in memory of Caitlyn, with the BRAIN child emblem on the back, grey ribbons on both sides, and Caitlyn's initials on the front. I will be posting pictures later.

All in all, the weekend was a great time of remembrance, laughs and a few tears.

2008-11-20T18:55:00.000-08:00

Hello all!

Sorry for not posting earlier as there really was not much going on.

All is well with the Cobean family and we are trying to get back to a way of life. Dylan and Bryanna are both quite involved with hockey so that occupies our time. Speaking of hockey, on November 28th at the Girls Silverstick tournament in Port Elgin, Saugeen Shores Minor Hockey are retiring Caitlyn's number "10". This ceremony will be part of the opening ceremonies. At which point we will be erecting a shadow box in the lobby of the arena as a memorial. Our hockey family are such a supportive bunch.

Also, on November 13th, I did something I never thought I would ever do. I got a tattoo put on my foot. Caitlyn always said she wanted a tattoo on her left foot, over the scar from her ankle fusion, that said "Imagine a cure" which is the slogan for brain tumours. So being as she was unable to complete her dream, I decided that this would be a great tribute to our wonderful daughter. Yes, it did hurt a lot but, as I sat there getting the tattoo, I thought of all the time that Caitlyn persevered the pain and agony of chemo and radiation and never said a word. I also, felt her there watching over me, laughing at me and telling me to "suck it up buttercup", one of her favourite phrases.

Well, until next time.

Rona

2008-10-07T18:50:00.000-07:00

Hello all
Well, we have got back into the swing of things, somewhat. Work, hockey and everyday life. Although it will never be the same everyday life.
We are spending a bit of time on a major project now. That is that we have been approved by council to have a Relay for Life next summer in Port Elgin. The date is set for June 26, 2009 at the high school track. I am a co chair with Jim's sister, Nancy and Trish Bernard, who is one of Caitlyn's friend's mother. We are all quite excited. There has been a tremendous support from several people already, wanting to help with this event. The three of us are planning on attending a conference on the Relay for Life, at the end of the month. All of this is helping with the healing process, as we continue the fight for Caitlyn.
We will keep you up to date on the progress of this great walk.

Rona

2008-09-16T19:31:00.000-07:00

Hello all

Well, we had a busy weekend! Friday night we spent the entire night in Mildmay at the Relay for Life with about 35 of our friends. We had 3 teams there to support us, in memory of Caitlyn. What a great event!! It was a very big emotional roller coaster. The event raised $72 000.00 for cancer research. Thsi is picture of our campsite at the event. We then came home and slept for a few hours on Saturday. Sunday was the Terry Fox Run in Port Elgin, where I had been asked to say a few words as Terry's teammate. Although it was pouring down rain there was a great turnout. We did not actually walk in this event as our feet and legs were still aching from Friday night. Again, another amazing event. So needless to say we have been in bed early the last couple of nights.

I have went back to work last week, once Dylan and Bryanna got settled into school. Jim is working also, (he went back to work the week after the funeral). We are planning weekend trips with the trailer before the weather gets too nasty and trying to find out what our "normal" is now. We dearly miss Caitlyn and often think of what Caitlyn would say when certain things arise. We truly felt her presence with us all weekend as we continued the fight against this horrible disease.

Thanks again for remaining interested in our postings.

The Cobeans

2008-08-26T19:16:00.000-07:00

Well, here we are 2 1/2 weeks out from Caitlyn's passing and we are adjusting to our lives without her here. Things are quieter in the house, but we can still hear her periodically coming up with her witty comments. It seems odd without her here.
Bryanna(for those who don't know that is Caitlyn's younger sister) and I are doing some day trips and Jim and Dylan (Caitlyn's older brother) are back to work. I will be returning to work in a couple of weeks, after the kids are back to school and settled.
We are also gearing up to participating in a Relay for Life (a walk to raise money and awareness for cancer that takes place overnight) in Mildmay on Sept 12. Our friends and family are entering 3 teams in honour of Caitlyn. I will posting pictures of the night after it happens. Those who are interested in sponsoring, please contact me. It is a great fundraiser for the Canadian Cancer Society.
Thanks for the ongoing moral support that everyone has been giving us as it has helped.

Thanks again
The Cobeans

2008-08-15T05:50:00.000-07:00

Well, it has been almost a week since Caitlyn passed away........it seems longer. For those of you that weren't at the funeral or visitation, it was a great tribute to a great young woman. There was approximately 900-1000 people through the visitation and a little over 600 at the funeral. We really did have the whole community behind us throughout this journey. We thank those who travelled a distance to be with us that day. Including those who only met Caitlyn once.
The sympathy cards are coming in the mail in droves. 73 in the last 3 days. We really truly feel loved.
Well, the house feels a little bit empty and I am having a little trouble with the extra time I have but, I really can feel her presence here, and her smile.
I was asked several times throughout the visitation if I was going to keep the blog up. I think I will as it is a great place to reflect. So, sorry you are not done hearing from me yet.

The Cobeans

2008-08-09T02:30:00.000-07:00

Well, it is with extreme sadness to let everyone know that Caitlyn passed away this morning at 3:50 am. She certainly did not go without kicking and screaming! She was surrounded by her family, and friends here in our livingroom with love pouring everywhere.
Her fight will continue with all of us, because there is not another family in the world who need to go through this pain.
She is at peace now!!!!

The Cobeans

The link to the funeral home is www.milroyfuneralhomes.com

2008-08-08T06:12:00.001-07:00

Well, Caitlyn remains somewhat the same. She is resting comfortably most of the times, but has periods of choking that prove to be exasberating to her. Enjoying her, day by day and hour by hour.
If nothing else, we have been taught to enjoy life as it comes at you and make the best of every moment you have.
The warmth of the community is overwhelming and heartwarming in a time like this.

The Cobeans

2008-08-07T07:03:00.000-07:00

Sorry for not posting yesterday. I usually do it in the evening and I was having a nap instead. Caitlyn remains resting comfortably. Early last evening she had a rough spell with her breathing but with a little more sedation she was fine. Her night last night was a good one, being only awake a couple of times with breathing problems.
Caitlyn, from the day she was diagnosed with cancer, decided she was going to fight this with all her might. I believe she has never lost that attitude and will take it to the end. As long as she remains as peaceful as she is now, we know we have all been blessed with one of the most amazing, strong and courageous children on the earth.

The Cobeans

2008-08-05T20:33:00.000-07:00

Caitlyn has had a much more settled day today. Her sleep last night was pretty undisturbed and her day today was much the same, having just a few choking episodes.
A Morphine pump was installed today to give her hourly doses of Morphine for sedation. This way she has a consistent dose and hopefully does not have the times when it wears of. Family and friends have been around all day, once again sharing good memories.
Thank you to all who take time out of their days to keep themselves up to date on Caitlyn. Thanks for all the well wishes, visits and food.

The Cobeans

2008-08-04T19:34:00.000-07:00

Well, this is one of the toughest posting yet. We have had a tough, tough day. Caitlyn started to have problems with her breathing throughout the night and by this morning she was having periods of apnea (where she stopped breathing for periods of time). After calling in the family and friends, her breathing rallied around. She is heavily sedated so her breathing doesn't become distressing to her. It is more distressing to us than her, thankfully.
Well, we have spent the day with family and friends, crying, laughing and reminiscing about Caitlyn and her antics over the years.
As night falls, we wonder how much more time we have with her on this earth and enjoying every second of it. She knows she is surrounded with love and that none of us will give up on the fight against this horrible disease. No other family should have to go through something like this.

The Cobean

Home Early

2008-07-31T09:57:00.001-07:00

Well, we arrived home from the cottage last night earlier than expected as Caitlyn's condition has deteriorated somewhat.

Prior to leaving for the cottage on Saturday, after loading her into the van, Jim asked Caitlyn if she was ready for the cottage at which point she nodded. Something she had not done for about 2 weeks. Yet another indication that we were doing the right thing.

After arriving at the cottage and setting her bed up in the livingroom that looks over the lake and putting her in the bed, we opened up the windows so she could hear the wind chimes, and the loons on the lake. Sunday afternoon she made it down to the beach via a chaise lounge chair where she was able to listen to the water lapping. Then again on Monday afternoon, she spent the entire afternoon on the beach in her chaise lounge with her IV pole beside her and a beach umbrella over her, listening to the goings on of the kids in the water and the boats going back and forth. She was awake at 4:30 am on Monday and watched morning come over the lake. There really is nothing better.

Monday night she developed problems with her saliva and was having troubles swallowing it and was up part of the night having troubles, therefore we spent the day in the cottage on Tuesday. Tuesday night proved to be a troublesome night for her with choking on her saliva and then she had a seizure. After some contemplation we decided to come home while she could. Thankfully the trip home was uneventual and she slept all the way.

After arriving home she had to be sedated somewhat as she was really having trouble with the choking and again this morning. What this means is that she can sleep comfortably without the difficulties of choking.

We are all so thankful we had those days at the cottage. It seems that Caitlyn completed her list of what she wanted to do. Go to the cottage, listen to the loons, sit on the beach, listen to the lake and watch the morning come up over the lake. None of this would of been possible if it had not been for all of our friends, and the nurses, and workers at CCAC that coordinated this whole event.

The Cobeans

2008-07-25T20:25:00.000-07:00

The update of the week.......Caitlyn has appeared to have perked up this week somewhat. She is sleeping a little less and is awake for a couple of hours in the afternoon as well as being awake from 6-10:30 in the eve. She has been out on the porch most nights for some fresh air and change of scenery.
So after some long and hard contemplation we have decided to go to our cottage for the week, leaving tomorrow. Caitlyn has not been able to verbally communicate with us for some time now, and she is no longer nodding or shaking her head so it was hard making the decision without her input. Occasionally she will communicate with her eyes, such as the look of surprise with the news of the sudden passing of her art teacher this past week. So early in the week as I chattered away to her, I told her that I wished she could give me a sign that she wanted to go or didn't want to go to the cottage. When I started out I asked if she really wanted to go to the cottage and she looked at me with her big eyes and started to blink repetitively then I said that we could stay at home in her comfortable bed with the air conditioning at which point she glared at me. I took that as my sign that she wanted to go. And given the more alert spells we figured we would try it.
There have been many people involved in making this trip work and all to be thanked. We have the use of a large conversion van with a reclining seat for her, we have quite a load of medical supplies and we have visiting nursing coming to the cottage. Her hospital bed comes apart and will fit into our van so she will have the same comforts of home yet have different surroundings.
We are hoping and praying that we have made the right decision!
So we will be unable to update the blog for a week or so due to the lack of internet connection at he cottage.
Please keep us in your prayers for our journey!!
Thanks
Rona

2008-07-19T05:16:00.000-07:00

Well, there is not alot to update everyone on this week. Other than she is having some difficulty with nausea that we are controlling with Gravol through her IV. Therefore in turn, she is sleeping more. She is usually awake for about 4 hours in the evening and for very short periods of time during the day.
She has not taken anything by mouth since last Sunday eve but her IV is keeping her nourished. She is responding with her eyes to the odd conversation so we are always talking to her.
The best news is that she is pain free.
Other than that there is nothing more to report. We are really wanting to thank each and everyone for their prayers, calls, visits, help, flowers, and food that has been pouring into the house.

Thanks
The Cobeans

2008-07-12T20:02:00.000-07:00

I am sure that many are waiting for an update, so here we are. This week, Caitlyn had a PICC line put in her arm on Tuesday, instead of an IV as the IV's were not lasting very long and she was having to be poked continually. This is a semi permanent fix and are much easier to maintain. This was inserted in Owen Sound, therefore, the car trip there was exhausting and she slept most of Wednesday and Thursday but has been awake more the last two days. She is having trouble swallowing so therefore her solid food intake is very low, but we have been able to get thickened juice into her.
She has also been out in a chaise lounge chair nightly on the front porch and loving it. The change of scenery and fresh air seems to be what she wants and enjoys.
She is not talking anymore so communication is limited but will nod and shake her head to yes/no questions.
Caitlyn also was privileged today to have a massage by her massage therapist, right here in her own bed and appeared to enjoy it when she fell asleep and was snoring.
So much the same as last week, but we will keep you up to date.

The Cobeans

2008-07-06T15:47:00.000-07:00

Caitlyn has grown weaker and weaker as the days have went on. She is unable to stand up. She started the chemo (pill form) on Tues July 1 but unfortunately by the next evening she was unable to swallow her pills. She was having difficulty swallowing fluids also. So on Thurs we had a hospital bed delivered and set up in the living room and an IV put in for hydration. Therefore the chemo has been aborted because it comes in pill form only and she is unable to swallow it. She has no pain so as far as comfort she has it. Her steriod and seizure meds are going through the IV though.
She has had a multitude of visitors which she seems to be loving even though she is unable to verbalize this. She uses her eyes to communicate and they say it all sometimes. She will nod and shake her head also to questions. She is certainly comprehending everything. Now since the IV she has been swallowing a bit better. Today she ate watermelon and last night had a couple of pieces of Caramilk chocolate bar.
She does sleep a far bit, but being in the livingroom allows her to watch her favourite TV programs when she wants.
She has had the opportunity to see her cousin who is in Africa for a work placement for school via a webcam, which has been good for both of them.
Well, until next time, thanks to all who have stopped by, brought food, sent prayers, and helped out with everyday life!!!

Thanks
The Cobeans

2008-06-28T06:51:00.000-07:00

Well, I am sure everyone has been checking the site for the update. We were in Toronto on Thursday to meet the doctor and have another MRI.
The doctor and nurses were amazed at the difference in her from 6 weeks ago. She is so much weaker.
Well, results are in. The cancer has spread once again. This time into the right side of her brain. We were suspecting that this would be the answer as each day she is weaker and weaker and sleeping more and more.
What can be done? Well, they have started her on a steriod to help a little with the energy and they are putting her back onto the one chemo drug she was on before for comfort reasons only. We have discussed this with Caitlyn and she was agreeable. This type of chemo shouldn't make her too nauseated.
Throughout this whole ordeal she has faced this head on, even as we told her the chemo would not help the cancer to go away, she nodded that she understood. She says she is not scared or sad, just mad at cancer and what it can do to the body! We are so proud of the strength that someone of such young age can find while facing life head on and taking it the way that it is given to her!! Never once have I witnessed her to feel sorry for herself! Well, I will keep the blog up to date as we travel this leg of the journey!

Thanks to all for the wonderful support and love
Rona

2008-06-15T19:03:00.000-07:00

Well, I am sure there are people wondering how things are going. Well, they are much the same. Caitlyn is about the same, she is tired......maybe not quite as tired as she has been and still struggling with her words. So, that is why we haven't updated recently.

Last weekend, June 6-8, we went to our cottage with 3 of her friends, Tessa, Emily and Alanna, and her sister Bryanna and her Aunt Nancy and Alanna's mom, Trish. This is a picture of the 4 girls on the front deck of the cottage. Our cottage is a family cottage near North Bay. The black flies were bad but the girls didn't care, they still had a great time together. Alot of laughs to be had.

Also on June 11th at the awards ceremony at the high school, Caitlyn was awarded the Principal's Leadership Award. This is given to the kids who show leadership to the school body. She was one of four who received the award this year. The principal felt that she showed the school body how to life through adversity, by maintaining the honour roll while fighting cancer and taking chemotherapy. A wonderful acknowledgement.

We also have the date for her next MRI which is June 26th at 6:30 pm. We haven't talked to the nurse to see if we will see the doctors that day in clinic then do the MRI and go home and get the results the next day by phone. That is what I am hoping will happen.

So, other than that all is the same. Which is a good thing!!

Thanks

The Cobeans

2008-05-30T12:49:00.000-07:00

Well,
Everyone is wondering how things are going so I thought I better update.
Caitlyn is very tired and spends alot of time sleeping. In fact I got a call from the school that she was sleeping through class, so we are now letting her sleep in, in the mornings and I am taking her to school during lunch and for a period after lunch. They have assured us that she has all of her credits and will not be writing any exams so school right now is more for the social aspect. But that usually is enough for her and she will come home for a 2 hour nap after.
She is also having trouble with mixing up words and not being able to get her thoughts across. She knows what she wants to say but it just doesn't come out the way she wants. This is due to the location of the new areas. She occasionally is frustrated with it but eventually we figure out what it is that she is trying to say. Caitlyn being Caitlyn can usually make something funny of it and we all laugh.
She also had a fun excurtion on the 21st when she was asked to go to a Marlies game in Toronto. It was a spur of the moment thing when one of her friends, Emily Kelly was going with a family friend, Don, and they had an extra ticket. They had a blast!!! It is a long story but a stranger out of the crowd ended up coming up to them and giving her a Marlies' jersey which she later got signed by the goalie and a couple other players. Pictures to follow!!! It was exactly what she needed. Some fun!!!
Tomorrow she is participating in the Cops for Cancer golf tournament as the "team captain", basically she will be at the dinner as a representative of the Cancer Society. Her dad and I are golfing in it and her brother is shaving his head at the event. We might note that he has raised around $1400 for the event.
Well, until next time......

The Cobeans

Well......final MRI result are in.........

2008-05-17T05:34:00.000-07:00

Well,
We received the final MRI results on Thursday night. Well, it wasn't as good as anticipated after all....... They have found there to be 3 new areas of great concern. These areas are unfortunately outside the original tumour area and are in the frontal lobe of the brain. They are very small right now, but none the less they are there. Not the easiest news to swallow!!!
There are two options that were given. We can wait for 6 weeks and repeat the MRI to see what they have done and at that point discuss treatment options. There is possibly 2 different trials of chemo that are available. Surgery is not an option nor is radiation. The other choice was to go to Sick kids run some tests now and assess chemo. Given that she is feeling so well, they are hesitant to this one, as you start to look at quality of life.
Well, after discussing it with Caitlyn, who took it all in stride. Caitlyn has decided that she doesn't want to start chemo right now because she is feeling so good and doesn't want to ruin it. So here we wait for 6 weeks. The doctors are absolutely amazing at Sick Kids as we had this discussion with the one Neuro oncologist at 11pm that night. She wanted to be honest and up front with us, but in the same token she was very upset telling us because Caitlyn has left a footprint on their hearts too, just like everyone else she has had contact with.
Well, we will keep the blog up to date regularly and for those who are out there praying for us, an extra one won't hurt!!!

Thanks
The Cobeans

2008-05-13T16:18:00.000-07:00

Okay! I will put a posting up, I am sure there have been a few on the site today looking for the update.
We spent the weekend in Toronto, and participated with friends in the Meagan's Walk, which is a fundraiser for pediatric brain tumour research at Sick Kids. This is our 2nd year and had a really good time. Then Caitlyn and I and our friends Pat and Lyndsay stayed Sunday night for Caitlyn's appointments on Monday.
She saw the neuro oncologists and the dietician during the afternoon. They were both pleased!! She has gained back some more of her mobility with her leg and arm and she also gained 2 pounds which is a great thing.
Then onto the MRI. They were an hour delayed therefore we were not out of the hospital until 10 pm. But the radiologist (a fellow, just learning) approached us after the MRI to ask if she had any headaches or any changes in her condition since the last MRI. He then stated that there were changes in the MRI but really couldn't expand on it. He strongly encouraged me to contact the doctor this morning but I knew that the doctor had told me they would call me today. Well, long story short. The neuro oncologist called at lunch to tell me that all is the same or stable. She has looked at it and compared it with the last one and can not see any change. She told us that this is a peliminary report and that they would be looking over it again with a real radiologist today for a final report. But she assured me that there was definitely nothing obvious and that she was unsure what the fellow was talking about. Now we breath again!!!!!
This being the case we are not to see them again for another 3 months. Good report?....well, I am pretty sure!!
Now that is why I was delayed in making a new entry on the blog.
I will update with the confirmed when I hear.

Thanks for the prayers and support everyone
The Cobeans

2008-04-23T19:13:00.000-07:00

Well we are back from another trip to Toronto. Today was Caitlyn's 4 month check up with the neuro-opthamologist ( a fancy name for an eye doctor who specializes in eye problems involved with the brain). Well, they were very pleased there and don't need to see her for 9 months. It was sort of like getting a "get out of jail free" card. Anyways, she does have her dreaded MRI on May 12th and will see her cancer doctors and the dietician that day. Because her MRI is at 8pm that day, we will come home that night and they will call us the next day with the results. So keep the prayers going.
She is doing wonderful right now. She did spend alot of time sleeping last week but this week she seems right up on life. She never stopped talking on the way to Toronto last night. That is the most energy she has had in 16 months!!!! It is good to see!
Well we will update you again in about 3 weeks, following our next appointment.

Till next time
The Cobeans

2008-03-30T19:00:00.000-07:00

Sorry again for the delay, it just means there is no real excitement right now. Actually normalcy is a great thing! It really is underrated.
We have got through March Break which was very uneventful and are now back to school and the grindstone.
Caitlyn is feeling great other than the occasional stomach pain which is quite distressing at times, but we are kind of holding off on the investigating because we are pretty sure it is still related to the chemo. Her blood counts are slowing starting to come back to normal but it feeling good.
School work is a bit tougher this semester with the 3rd course thrown in there but she is keeping up. She is still doing physio 5 days a week at school with her educational assistant and 2 of those days she goes to the pool for excercise. It all seems to be working she is getting stronger all the time.
We are back to Sick Kids on April 23 for an eye appointment and we have our date for the next MRI which is May 12 at 8pm, that will be the 3 month mark. I wish sometimes that they wouldn't tell us the date until closer to the time then we don't have to worry so soon, but as soon as you hear the date you start to worry!!
We are putting a team in the Meagan's walk again this year, which is a walk from Ontario Place to Sick kids followed by a human hug of the hospital, all to raise money for brain tumour research. It will be held on Mother's Day (May 11), if anyone is interested please let us know, every one is welcome.

Til next time
The Cobeans

2008-03-09T09:41:00.000-07:00

Sorry for not posting for a while. That just means there has not been anything real exciting (which is a good thing).

She is feeling really good, other than a cold which half of the town has. Physio and occupational therapy is going well, with improvements noted all the time. She is right now just slugging around for March Break with no big plans.

On February 28th, Caitlyn, 8 friends and 8 moms went to see Dirty Dancing in Toronto. It was a great time!!! Here is a picture of some of the girls that night.

Well until next time,

the Cobeans

Good visit at Sick Kids

2008-02-21T19:35:00.000-08:00

Hello all
Well we were at Sick Kids today, and all went well (as we expected). The MRI was the same as the last one therefore meaning it is stable, just where we want it!! So, now that she is in the recovery phase, she is going to start back to some normalcy. Therefore, the doctors told her to do her bloodwork again in 2 weeks and if it is okay, we can stop doing it. She will continue to have a MRI every 3 months and see the doctors right after. So next visit to oncology will be in May!!!! She has an eye appointment there in April but other than that our visits will be getting less and less. What will we do with all our time?????
We will continue to keep everyone in the loop and I will try to update the blog regularly with how she is doing!!! Continue the prayers and we can try and keep this tumour where it belongs!!!!
Thanks
The Cobeans

Good News again

2008-02-18T18:32:00.001-08:00

Well, the MRI was yesterday. We went down on Saturday night when we heard about the freezing rain. Thank God we did, apparently it was a skating rink here.
We did not expect to hear anything until we went for our visit this Thursday, but the neuro oncologist phoned tonight at 6pm to tell us that the MRI looked good. She felt that waiting until Thursday was too long!! We agree but were willing to do it.
I am sure we will find out more on Thursday like looking at the films, but we are excited for now. It is all about the present!!! This was a great early birthday present for Caitlyn.
We will update more after Thursday.

The Cobeans

2008-02-09T05:35:00.000-08:00

Hello
Well all is going good. Caitlyn is feeling great. We were in Toronto yesterday for a check up with her neurologist (the one who helps with her seizures). He is happy with her progress and we don't have to see him for 6 months.
She has a date for her next MRI, Feb 17th, but because that is a Sunday, we are going back down on the 21st for a check up and the results of the MRI. She is feeling really good, so we hope that this is reflected in the MRI.
School is going well, and they have started second semester so she is taking three courses this semester with her 4th period being for her physio and occupational therapy. Report cards are in from first semester and she got an 81% average. She is fairly proud of that.
Well, we will keep you posted but for now, all is well.
Thanks
The Cobeans

2008-01-30T10:50:00.000-08:00

Hello all
Well, here we are all home on a wonderful snow day. We are feeling like we are inside an igloo and can not really see too far outside our windows.
Caitlyn has completed her exams, writing math last Friday and geography on Monday. She felt pretty good about both of them. She is feeling really good these days and we even had the opportunity to finally go out and celebrate the fact that she finished chemo. Our camping friends and the five of us went to Crabby Joe's last night for dinner to celebrate. Finishing dinner with a cake decorated with "Yipee, chemo is over!"
Well, we will let everyone know how well she did in this semesters courses. Next semester starts next week and she will be taking English, History and Food & Nutrition, using the 4th period for her physio/ occupational therapy.
No word yet on the MRI date but we will keep all posted.

The Cobean

All Done!

2008-01-20T08:02:00.000-08:00

Hello all
Well, her last round of chemo is complete!!!!!!!!!! She did spend the entire week home from school as her stomach was quite upset and we ended up in Emerg on Tuesday night with uncontrollable heartburn which was treated with a solution that was effective. She experienced fatigue also this week, but appears to be bouncing back once again. She definitely had an enormous smile on her face Friday morning when she realized that there would not be any more chemo.
Now, you ask what happens now. While as Caitlyn was told at Sick Kids last time she was there. She has 3 jobs to do now. 1) Have a MRI every 3 months, 2) Do bloodwork regularly and 3) Go have fun and be a kid. Well, I think that we can handle all of that.
So they monitor the tumour with the MRIs and they may sometime in the future have to restart chemo if there is regrowth of the tumour but for now, all is good.
We will continually keep everyone up to date with her progress.

Thanks
The Cobeans

Well,Round 6 here we come

2008-01-10T18:32:00.000-08:00

Hello all
Well, the bloodwork this morning showed that her body has recouped enough to have her last round of chemo!!! They are eliminating the one kind of chemo because her counts have been struggling to come back up but they are keeping the rest the same. This is not an issue though. Now, Caitlyn is following her hockey team to Cambridge for a tournament this weekend so the doctors agreed that she could delay starting the chemo until Sunday night. Following that she doesn't go back to Sick Kids until her next MRI which should be some time near the end of this month.
In the rest of her life, well, she is gearing up for exams at school and studying seems to be going okay so far. Her physio and occupational therapy that she does at school really has been going well. She has some great educational assistants who really challenge her and do a lot to help with her therapy. Today, for the first she walked the halls of the high school with her E.A.s. This is now going to be a part of her daily therapy, to get up from her scooter and go for a walk. Her next goal is to go without her scooter at school on her birthday (Feb 22) therefore she is going to practice until then.
Well, we will update next week following her LAST round of chemo.

The Cobeans

A New Year

2008-01-02T19:47:00.000-08:00

Hello all
Well, we have all survived the festive season. Busy but fun!! Caitlyn has not had much to do medically since the last posting but she has done lots. We celebrated Xmas and Boxing Day with family then New Years eve and day with friends. She also completed her goal of the holiday break and that was to get back on skates. She was quite nervous but made a half of a lap around the arena before taking the skates off.
Then, today was back to the grindstone with bloodwork. Her platelets are high enough but her neutrophils (for fighting infection) are still too low. So no sign of chemo yet. Bloodwork will be again next week to see if they are coming up. Until then......
The Cobean

Spoke too soon again

2007-12-23T05:20:00.001-08:00

Hello all
Well Caitlyn's platelets didn't recover the way we were hoping for. Even though her platelets looked like they were on the rise at 85 when we were at Sick Kids on the 14th they are actually only at 54 presently. Really unknown as to way they were 85 at Sick Kids but after having blood work 3 times this week we have an accurate number now at 54 which means she wasn't able to start her chemo on time. The doctor's explanation was that her bone marrow is really tired and just needs a rest. So, they told Caitlyn to take a break for a couple of weeks and don't do any blood work until after the new year and then they will decide how much chemo they can give her. Now Caitlyn was pretty set on having this all over and done with before Christmas, so we figured she would be very disappointed, but Caitlyn being who she is said "oh well, at least I get a break for a while". There really is a brighter side to everything.
How is she otherwise? Well, she is feeling great and is very excited for Christmas. She has been busy wrapping presents for me. She is also starting to gear up for exams which are at the end of January so she is planning to start studying over the Christmas break. Hopefully her brother will take a lesson from her!
Well, we want to wish everyone a very Merry Christmas and a Happy New Year!!!

The Cobeans

The prayers are working

2007-12-14T21:06:00.000-08:00

Well, hello all
Today was a very sucessful day at Sick Kids. Caitlyn started the morning with her eye appointments which she was told everything is stable and she doesn't need to come back for 4 months. Then we moved upstairs for the chemo doctor appointment. After having her blood taken 3 times they were finally able to get her platelets and they are up!!!!!!!!!!!!!!!!!!! They are at 85. This potentially means that by early to mid week, next week, she should be able to start her 6th and final round of chemo. We are hoping that we aren't building ourselves up for disappointment but are going with it for now. As Caitlyn said on the way home that this was the best Christmas gift anyone could give her!
Also while there with the chemo doc, he assessed her and and asked how her right side was. He was shocked and thrilled that she is getting movement back in the right arm and hand and that her right leg has improved greatly. He said that this is extremely rare because it doesn't very often come back. With Caitlyn's determination and the wonderful physio and occupational "terrorists" that she has they will prove them wrong.
Well, now that we have shared our great news, we will update you all next week after her blood work and hopefully we have jinxed ourselves.

the Cobean's

Still dropping

2007-12-07T19:33:00.000-08:00

Well........
Caitlyn's platelets have dropped again and they are at 41 today. We are still scheduled to go to Sick Kids next Friday to the oncology floor. They will check her all over and then I guess we will continue with bloodwork until the platelets come back up. So right now it doesn't look like she will start chemo next Friday nor will she be done before Xmas but as I said last week, that is how the cookie crumbles. You soon learn to live by the seat of your pants.
Other than being tired Caitlyn is feeling good. She completed her Christmas shopping today and has it wrapped.
Well, we will update again following her appointments at Sick Kids next Friday. Until then......

The Cobeans

Low blood counts again

2007-12-01T14:54:00.000-08:00

Hello all
Well, the counts are in for the week. Her platelets have dropped below 100 again. They are sitting at 69. Now, historically, when her platelets would go this low, they would take about 3 weeks to come back up. Well, she is to start chemo on the 14th of Dec, which is only 2 weeks, therefore allowing her to be completed prior to Xmas. If her counts don't recover fast enough she won't be able to do her chemo then and it will be either over Xmas or over New Years. We are needing an extra round of prayers to get those counts back up before the 14th enabling her to be completed prior to Xmas. But if that doesn't work, well.... you have to take the cookie as it crumbles.
Well, other than the counts being a little low, she is feeling good! Other than a few stomach problems, the headaches have slowed down and she rarely complains of a headache.
It is hard to believe, as we get ready for Christmas, that we are fast approaching the one year mark of this journey. There is certainly alot to reflect on this season.
Well, we will update everyone next week with the next bloodwork.
Until then..........

the Cobeans

2007-11-22T04:23:00.001-08:00

Hello all
Not really much to report. Everything is going well, Caitlyn is feeling well. Her blood counts seem to be staying up where they are suppose to so far and hopefully I haven't jinxed myself. So hopefully her next chemo won't be delayed. It is scheduled for Dec 14th.
On the hockey side of our life, (which it seems we have only two things in our life, hockey and chemo, haha) Caitlyn has been asked to join the Midget girls hockey team which is where the majority of the girls she played with last year are playing. She is considered a staff member and is very excited about it. This weekend is Silver stick for the girls here in Port Elgin. There is a game scheduled for the Women's Hockey League on Saturday at 2 pm between Vaughan and Burlington. Caitlyn has been asked to drop the puck at that game. She is pretty excited about that too.
Well, hopefully I will have nothing more to report than hockey news for the next little while.
Take care
The Cobeans

Round 5 done!!

2007-11-11T19:14:00.001-08:00

Hello all
Well, Caitlyn was able to complete round 5 of her chemo without a hitch. She had one day of feeling slightly gross, but it was a PD day anyways so she just laid around on the couch anyways. She has been at school throughout and feeling good.
This weeks blood work was just great so with all fingers crossed her blood work will stay up there and she will be able to start round 6 (last round in this protocol) on December 14th. We think that the plan after she is done chemo is that they monitor the tumour every 3 months and make sure there isn't any growth. But we really haven't went over with the doctors as to what happens after chemo. When we got this protocol explained to us was last January and we were having a little trouble looking past that day. But here we near the end of chemo and need to look beyond it.
Anyways it is good to see her feeling so good and getting back to some of the things that she used to do.

Til next time
The Cobeans

Round 5 at last!!

2007-11-03T04:53:00.000-07:00

Hello all

Well, Caitlyn was finally able to start round 5 of her chemo. She is 5 weeks late but better late than never. She had blood work in Southampton on Thurs and it was still not high enough. She had an appointment in Toronto yesterday for a recheck on her foot so we went to Sick Kids to see about what we were to do, so they repeated the bloodwork. Someone answered my prayer, and her blood work had improved, so she was able to start last night. She, of course, was a little apprehensive because she has been so long since she last took it and she has been feeling absolutely great. But she put the brave face on and her first dose is in. She will be taking it for the next 4 nights then hopefully will have only 37 days off and start her last round (#6) mid December.

Other than this, as I said, she is feeling great. Her walking is improving and her arm is getting stronger. She is starting back with some physio and is setting some goals for the new year. Here is a picture of her when she dropped the puck at the Winterhawks game last week. She was presented with a signed jersey from the team and a signed stick from the opposing team. She was very excited!!

Well, hopefully we won't have any updates until next week to tell you that she sailed through her chemo.

The Cobeans

News from the MRI

2007-10-22T18:33:00.000-07:00

After a long weekend of driving, the MRI went well yesterday! The news today is that the tumour remains stable!!!! That is all we ask for!!! All prayers were answered!!
Other than having a sore stomach and being home from school with it today, she is feeling good. She is feeling better tonight and should be able to go to school tomorrow. She hates to miss a day because she does enjoy the social aspect of school.
We are going to do blood work again on Wednesday and are hoping that her platelets are high enough to do the fifth round of chemo over the weekend.
Caitlyn is quite excited also for this Friday night as she has been asked to drop the puck at the Winterhawks game (new senior hockey team in town). The sponsor of the night asked her to drop it and put a display up in the lobby and being as this week is International Brain Tumour awareness week we thought this would be a great time to do something like this.
Well we are glad to share our good news with you all and hope to continue to share more.
Thank you to everyone for the continued prayers our way!!

The Cobeans

October 17, 2007

2007-10-17T19:51:00.000-07:00

Hello all
Well, Caitlyn's count continue to rise. Her platelets are at 66, not quite high enough for chemo but at this rate, hopefully next week. I don't want to talk too soon though. She is feeling really good right now though, and appears to be getting more use of her leg and arm all the time. So her regular MRI (she has them every 12 weeks) has finally been booked and it is this Sunday morning at 8:30 am. Therefore we will be having a busy weekend with Bryanna's hockey game in Goderich on Saturday and Bryanna's BMX banquet on Sunday with a trip to Toronto in the midst of this. So all prays are very welcome as we go through yet another MRI to check the status of the tumour.

Til next time.......

Hooray

2007-10-11T17:51:00.000-07:00

Well,
Good news, Caitlyn's platelets are starting to come back on their own. Her bloodwork today showed that her platelets are up to 35 from 26 on Monday. We are so excited, she will not need a platelet transfusion this week, like we were thinking would happen. This means she is that much closer to having chemo. Her platelets need to be at 100 before we can start and historically when they go up they go up fast. Seems bizarre that you would be excited about taking chemo but she has 2 more rounds. We have the chemo here at home so can start as soon as her counts are up she starts.
She is feeling really good right now and enjoying school. Other than that all is the same.

Til next time..........

A visit to Sick kids yesterday

2007-10-05T15:05:00.001-07:00

Hello all
Well we were at Sick kids yesterday with the hopes of starting chemo. (While at least I was hoping, Caitlyn would rather not take it this weekend with Pumpkinfest on). Well, Caitlyn got her way, her counts are still way to low to start chemo. But being as her chemo is in pill form, we were able to fill the perscriptions and bring them home and when her counts come up we can start here.
They have decreased her dose of chemo being as her platelets are so low. They haven't seen this side effect in children yet, but it is a common side effect in adults. This chemo protocol is very new in children though, in fact Caitlyn is in the study group. It has proven to be effective in adults so they are now testing it on children. They also feel that her Dilantin (that blessed Dilantin) for her seizures could be causing some of this so she will be going to see a neurologist to assess this an change her to something else.
She has had a few very small headaches recently lasting less than a minute but the doctors were not that concerned about them.
So we now have a waiting game until her counts come up and we can get on with this chemo again.
Happy Thanksgiving to all, and take a minute this weekend to really reflect on all that you can be thankful for!!!
Til next time
Rona

September 30

2007-09-30T18:01:00.000-07:00

Hello all

Well, lots of news!! Caitlyn's blood counts dropped again this week on Thursday down to 19 therefore she had another platelet transfusion on Friday night in Owen Sound. We are going to do her blood work again the first of this week to check how her counts are but Sick kids is hoping to start chemo this week. We have an appointment this Thursday there with the hopes. They are saying that they are going to have to decrease her dose as her bone marrow is not keeping up.

She also had a rather exciting day yesterday in Toronto at the Blue Jays game. She was on the field for the 7th inning stretch. All 2 minutes of it, but it was exciting to be right on the field. We had a bus load of people as well as 3 car loads go. About 60 people in total go and support us!!! What a great group of friends and family!!

She is still enjoying school and will finally be starting on the disability school bus tomorrow. We have been driving her to and from school daily while they organized it but as of tomorrow morning they will be picking her up and dropping her off.

Well we will update you more after our appointment at Sick kids on Thursday!!

Until then.....

The Cobeans

Platelets took a dive!!

2007-09-18T17:15:00.000-07:00

Hello all

Well all is going well with school and Caitlyn is really enjoying it. She has been able to go to school daily until this week. This week her blood counts have took a dive. Her platelets, which helps with clotting, have been decreasing since last week and Monday's count was only 20. (The normal count is 250-400 and chemo can not be given unless the count is above 100 and Sick kids orders a platelet transfusion for 20 or under.) Therefore today we were in Owen Sound hospital for the afternoon for a platelet transfusion. Now we are lucky as this is a first and she has already had 4 rounds of chemo.

Her next round of chemo was scheduled for next Thurs (the 27th) but it looks like it will be postponed until her platelets are up above 100.

Well, we left the hospital after her transfusion and only made it to the other side of the city before her eyes started to swell and she developed a rash. So back to the hospital we went for Benadryl and they kept us for another 2 hours to make sure she was going to be alright. This is not uncommon for a reaction to happen. They do know though that the next time she needs a transfusion that they will give her Benadryl before the transfusion.

Anyways she has been to school for a couple of hours Monday and Tuesday and I think I will keep her home tomorrow to recoup and then back to the grindstone.

Till next time.

Rona

Back to School

2007-09-04T16:08:00.001-07:00

Well today marked the first day of high school for Caitlyn. She is currently only taking Math and Geography. She is taking a course in learning strategy which is where she can get extra help to complete any work she may miss with being away from school periodically. Then she has a spare period to help with her fatigue.

Yesterday, we purchased a motorized chair for her to enable her to get around the school easier. With this she is able to get herself around the school without having to have an educational assistant to help her to and from classes. The original plan was that she would walk with the assistance of the EA until she was tired then she would have a wheelchair for the EA to push her in. Well, now she will be able to get around without their help and not be fatigued.

Overall though, she is feeling great. Her walking has improved, and her speech has really improved. She is improving daily.

Caitlyn's other good news is that she will be attending a Blue Jay's game on September 29 where the Ontario Brain Tumour Association is part of and they have asked for some of the Brainchild (an organization of parents of children with Brain tumours) children to help with the seventh inning stretch. Cailtyn has been asked to help with this and is pretty excited.

Well, there is our update for now and will keep you posted with her progress.

The Cobeans

Done chemo! Two more to go!

2007-08-22T17:40:00.000-07:00

Well Caitlyn finished her chemo on Monday night and so far so good. She had very little vomiting but was plagued with some nausea. She didn't end up going to Owen Sound hospital because she was not sick enough. Maybe it helps to have everything in place. Murphy's law I guess. I believe with all the changes they made this time there was success. Also now that her dilatation level is coming down she is feeling a lot better & walking much better!Now I hope I am not talking too soon and it comes back but for right now she is feeling good & looking good. She started at the pool again today and worked hard at it. Well must go but will keep you up to date.

Thanks again for all your love and support.
Caitlyn & Rona

Round 4

2007-08-17T07:27:00.000-07:00

Hello all
Well we were in Sick Kids yesterday. Caitlyn's platelet count came up to 125 yesterday, so it was a go ahead for chemo. They adjusted her chemo slightly due to her 22 pound weight loss. They have started her on a steriod for 3 days of her chemo with the potential of taking it a couple more days if need be.
Her Dilantin level was checked yesterday in her blood. Her dilantin is for her seizures and periodically it needs to be checked to see if she has enough in her system to ward off seizures. It was checked in May and found to be low and she had a partial seizure at that point. They increased her Dilantin at the point and we checked a few weeks after to be found that it was fine. Well yesterday it was extremely high, which could explain the symptoms she has been having like, slurred speech, fatigue, weakness, and trouble walking. Therefore meds have been changed and we are hopefully that these symptoms will change for the better.
Well, we will keep you updated as to how this round pans out.
The Cobeans

Platelets up slightly

2007-08-14T19:09:00.000-07:00

Hello all
Bloodwork yesterday showed us that her platelets are up to 87 from 68 last week. So at least it is going up and no longer down. We figured that there would not be chemo this week, but we got a call from Sick Kids today to tell us to come down on Thurs. They will do her blood work again, and are anticipating that her count will be up even more. They will start her chemo this week, then. The plan is that they are going to decrease her dose, (being as she has lost 20lbs), they are going to put her on a steriod for the days she is on chemo and they have changed her nausea medication. With all this and the fact that she will be admitted to Owen Sound hospital should make this round better.
She is feeling pretty good, having trouble with the walking department because she became so weak with the last round of chemo, but as soon as she feels better from this round, it is back to the grind stone with therapy. She hasn't been able to do much therapy this summer with the chemo and then we were away.
Anyway, I will update you after Thursday's appointment.

Take care
The Cobeans

No chemo this week

2007-08-10T15:14:00.000-07:00

Hello all
Well, my thoughts were confirmed. Caitlyn's chemo has been held off as her platelets are still low. They need to be above 100 before they can give her the next round of chemo. We will be doing her bloodwork on Monday to see where we are at and if we can start chemo next week. She is certainly enjoying the fact that she has another week or so to feel good. And that she is right now (feeling good). She was back to the pool yesterday for therapy which seems to have helped with her walking. Well that is about it and we will report back in next week with her blood counts.

Til then,

Rona

Home from holidays

2007-08-07T18:53:00.000-07:00

Hi all
Sorry for the lack of postings lately. Caitlyn is doing really good right now. She went to Camp Kintail from July 22 until July 28. She had a great time there!!! She has had lots of stories to tell us since. We get daily stories from camp. She had great counsellors and cabin mates.
We picked her up in the morning of the 28th and we left that afternoon for the family cottage, which is near North Bay. We returned home from the cottage yesterday. We all had a great time and Caitlyn got in the lake while up there. She had a blast!!
She is feeling good right now, eating and drinking well. She is starting to be able to walk around on her own again. Because she was sick with the last chemo, and became so weak, she was not walking around without help. During camp she was in a wheelchair because it was easier to get around. Therefore she has to retrain her body to walk around on her own again, but she is doing well.
She is to start chemo this Thursday but her platelet count is still low. Her platelets have been at 67-68 for the last 3 weeks. Apparently her platelets need to be above 100 before she starts her next round so I guess we will be holding off of chemo for now. I will need to talk to Sick Kids tomorrow before I can say for sure but it looks like we will be doing her bloodwork again next week to see if it is above 100 to start then. She is excited about that because she is feeling so good right now she doesn't want to ruin it.
Well I will update again when I find out for sure if chemo is postponed.

Rona

July 23rd

2007-07-23T19:57:00.000-07:00

Hello all
Well things went very well last week. Caitlyn was discharged from hospital on Monday of last week and spent the week regaining her strength. She spent the week eating and drinking and bounced back to what she was prior to her last round of chemo, "on top of the world".
She did end up going to camp yesterday (Sunday). She was pretty excited about it. She will be skipping the swimming part of camp, (they have to go down about 100 steps to the lake) and spent it with the nurse, napping. They also have "down and out" time every afternoon so she planned on napping then too.
But she was so excited about camp that she worked hard getting her strength back before she left. So it is very quiet around here without her and Bryanna is enjoying the use of the couch again. I will be going down to get her for her bloodwork on Wednesday morning and will return her to camp by lunch time.
Well, we will update you after the week at camp.

Rona

Spoke too soon

2007-07-16T18:52:00.000-07:00

Hi all

Apparently I spoke too soon with the last posting when I said that Caitlyn was starting to feel better. Well, she felt better that weekend, Thurs, Friday and Saturday. But on Sunday (the 8th) she started to get dizzy and had double vision. By the next morning she was vomiting. Well by Wednesday we were in the emergency department in Sick Kids for most of the day. They did a CT of her head to make sure that she didn't have any fluid build up around the tumour. Which came back the same as her last MRI, stable. They told us that she was dehydrated and sent us home. Dr. Sauro, her pediatrician, admitted her to Owen Sound hospital on Friday, because she was still having dizziness and double vision. They gave her an IV on Friday and by Saturday they started TPN which is nutrients and minerals through the IV site. They felt that the dehydration and malnutrition from the nausea and vomitting was causing her to be dizzy then the dizziness was contributing to the nausea and vomitting. Anyways by this morning, she was doing better so they discharged her. Today she has had 3 meals, which is a first in 2 weeks. The doctor is talking about possibly admitting her to the hospital in Owen Sound during her next round of chemo to prevent her from getting to this state.

Camp has been put on the back burner for right now. She can still go next Sunday for the week and if that doesn't work she could go in August. She has her heart set on camp and how can you deny her when she is a kid who just wants to be the same as everyone else. She has to deal with so many adult things, it is nice to see her excited about something.

Well, I am not going to say it, so we just hope everyday will prove to be a better day than the last.

Keep the prayers going!!

Rona

Starting to feel better!!

2007-07-05T17:08:00.001-07:00

Well, things are starting to look up. Caitlyn was up and moving around a bit more today. She is still tired and not eating very well, but at least she is eating small amounts and is not as nauseated. She is walking around the house without support again as the dizzyness has left her again. Thank you God! She is drinking well, also!! The side effects of this round are definitely resolving sooner than the last one did.
Our other dilemma is that she was signed up for Camp Kintail for mid August and we had to make the decision today to call and cancel it. The week she was to go, was the week that she finishes her next round of chemo. When I called camp today though, they offered her an opportunity to go as a volunteer of Kintail (VOK) for the week of July 15-21 which would work out better with her feeling better. They help out with meals, setting the table and doing dishes as well as a major project as a group. Anyway, she will get 30 of her 40 hours of volunteer needed for her high school education. She is going to try this. She is now on cloud nine with the thought of being actually able to go to Camp Kintail. This will be her 10th year at Camp Kintail.
Well everyone keep your fingers crossed that she remains on the upswing of this round!!!

Rona

Update on chemo # 3

2007-07-03T17:31:00.000-07:00

Hello all

Caitlyn has finished round 3 of 6 chemo. She started last Thursday and finished last night. This one didn't go very well again. She did well until Saturday when the nausea started. By Sunday night she was very dizzy and the nausea progressed to vomiting. We could not get the vomiting controlled long enough to get her chemo into her that night, so we went to the hospital for an IV. They gave her the nausea medication that she normally takes by IV which finally settled her stomach long enough to give her the chemo. She fell asleep about 3 am in emerg and we returned home at 7 am. She went back to bed when we got home and didn't get up until 6:30 pm. They left the IV in her hand as she is has poor veins for starting an IV. If she starts to drink better, I will take it out. She has been very weak and nauseated since. Tonight we are starting to see a slight improvement. She is drinking sips and had 1/3 of a roll. The most food she has ate since Sunday. She is done with chemo for now, so she should start to gain her strength back again. We will keep you posted though. Here is a picture of her tonight in her domain (the couch).

Rona

More good news

2007-06-27T20:00:00.000-07:00

Hello all

We were down to Toronto on Sunday for Caitlyn's routine MRI. She has one after every 2 chemos. Anyway we received a phone call on Monday from one of Caitlyn's doctors with good news. Although I was a little nervous because I always think no news is good news, but they apparently call the family right away when they know you have an MRI.

Anyway the doctor was pleased with her MRI. He stated that the tumour remains the same and possibly slightly better, which is our goal!!!

We are heading down to Toronto tomorrow to get started on chemo for round 3. This will mark the half way mark of the chemo. Hopefully this round will be better for Caitlyn than the last one was.

Anyway, we thought we would share another picture from grad, also. This is two of Caitlyn's good friends, Kae McDermid on the right and Nicole Carson on the left. Both are in Grade nine and attended the grad to support Caitlyn.

Everyone have a great Canada Day weekend!!

The Cobeans

Graduation Day

2007-06-21T20:56:00.000-07:00

Hello all
Today was Caitlyn's grade 8 grad day!!! It was very exciting!! She looked absolutely beautiful and felt great to boot. She is continuing on and having a couple of very good weeks. She is feeling great and her strength is increasing. Her leg and arm are getting better.
We are heading to Toronto on Sunday for her next MRI and we will get the results on Thurs (28th) when we head down to start round 3 (of 6) of chemo.
This entry is short and sweet but mainly to show Caitlyn off with her grad outfit on.

Rona

Back from Toronto

2007-06-15T04:25:00.000-07:00

Hello all
We were in Toronto for a couple of appointments this week. Wednesday, Caitlyn had an appointment at the eye clinic. This was a 3 month check up as she had lost the vision in the bottom right corner of her visual field. It seems the same. They performed what they call a visual field test, but there was some problems with the testing so the doctor said that they will just repeat it in 3 months again. She also had an appointment booked for today (Friday) with the orthopedic doctor that fused her ankle in Dec, but we received a call late Wednesday (while we were in Toronto) to say that it was postponed until August. While we had already checked into the hotel room so we stayed Wednesday night. We then went to Sick kids yesterday for blood work and a quick check up with the doctor. Every thing is going well though.
She is feeling really good. Still quite tired but the doctor told us that the tiredness should start to subside soon, as the fatigue is from the radiation. She is pretty busy with her therapy program though which tires her out.
Well all is good so we go with that and enjoy the next two weeks until she starts chemo again.

the Cobeans

Cottage Bound

2007-06-04T05:53:00.000-07:00

Hello all
This past weekend we spent at the family cottage near North Bay. Caitlyn and 3 of her friends, Emily, Tessa, and Alanna as well as Aunt Nancy, Trish Bernard, myself and her sister Bryanna went. The adults planted the flowers at the cottage while the girls just hung out. The weather allowed them to get in swimming!! The bugs were fairly bad though, as noted by Caitlyn's head!
The pains in her stomach have improved and her appetite is almost back to normal. She is definitely feeling much better. She is back in full swing with physio and occupational therapy.
School is winding up so Caitlyn is attempting to go to school a bit. Her grade 8 trip to Niagara Falls is this Friday and grad is in just over 2 weeks. Both of which she is looking forward to.
We don't have to go back to Toronto until next week for an eye appointment and a check up on her foot. Then the 24th of the month for another MRI and the 28th to start chemo again.
Well, we will keep you posted and hopefully there will be nothing more to report this month, then the fun that will happen with the last month of grade 8!!!!

Rona

May 30th

2007-05-30T18:26:00.000-07:00

Hello all
Things are looking up. After a week and a bit of feeling absolutely lousy Caitlyn is on the mend again! (we hope we aren't jinking ourselves). She is down a few pounds from not being able to eat for the last couple of weeks. She is back to eating but not a great amount. Her energy is definitely lower but should improve now that she is eating and feeling better.
We attended the Cops for Cancer tournament at Saugeen Golf Course this weekend. What a great day! Caitlyn and Bryanna came for the dinner (not that Caitlyn ate) and Caitlyn was able to shave off one of the local police officers.
Caitlyn also attended the high school on Monday for a shave off of Victoria Bertrand and Becki Angel. These two girls shaved off their long hair in honour of Caitlyn and at the same time raised over $2000 for Cancer research. What a great job girls!!
Caitlyn was able to attend school for this afternoon but is a bit tired tonight. She will be starting back with physio and occupational therapy tomorrow, she has been off the last 2 weeks because she has been feeling so unwell.
She now has a rest until June 28th when she has the next chemo, so we are going to enjoy each of those days.

The Cobeans

2nd Round of Chemo

2007-05-23T20:33:00.000-07:00

Hello all
Caitlyn has had a bit of a rough time with round 2 of her chemo. She started the second round started last Thursday night and ended on Monday night. During that time she felt pretty lousy. She has had very little appetite and ended up in emerg on Sunday with a severe stomach pain. She was started on a medication for her stomach which has decreased the pain slightly. Then on Monday night when getting ready for bed she had a fever, so back to emerg again. That time she had bloodwork and a chest xray which both turned out alright. The fever broke and we were home by 1:45am. No real good reason for the fever other than possibly??? a reaction to dehydration. Anyway she is feeling somewhat better today. She is starting to eat a bit more and no more fever. If only the stomach pain would leave!!!!
Well there is 5 weeks off now in order to recoup!! We will keep you posted.

the Cobeans

Meagan's Walk

2007-05-14T18:43:00.000-07:00

Hello all!
We spent Mother's Day in Toronto, surrounded by many friends and family participating in Meagan's Walk. What a great time!! Thank you to all who make the trek to Toronto with us and those who sponsored us or someone on our team!! There was 43 members on Team Caitlyn. Meagan's Walk is a fundraiser for Pediatric Brain Tumour Research. This was the 6th year running and would have made it over the 1 million dollar mark. Our team was able to collect a little over $5000.
Caitlyn had a great week last week. She went to school on Wed and Fri. Her strength and stamina was up. Her right side is coming well, and she is starting to be able to pick coins up now with a bit of work which is great to see, but starting to be a little expensive because when she picks them up we don't generally see them again. Now today she is extremely tired but to be expected after this past weekend!! All of us are tired, no wonder she is!!
Now we head to Toronto on Thursday of this week as this is the 6 week mark and she starts chemo again. She will be taking it for 5 days ending Monday night. We will keep you posted as to how she is feeling during it.
Thanks again to all our great friends out there who are always cheering us on!!!

The Cobeans

Another check up

2007-05-01T06:01:00.000-07:00

Hello all
We have returned from Toronto, once again. Caitlyn had an appointment yesterday with the neurosurgeon (doc that did the biopsy) and with oncology (chemo doc). The neurosurgeon was happy with her incision and we don't need to see him again in clinic but said he is there if we need him.
The oncologist just needed to see her yesterday as she is coming off the steriod and they wanted to make sure she was okay. She will be finished with the steriod on Thursday which means she will be done with the Zantac to protect her stomach from the steriod. All in all she will be down to 6 pills a day from approx 20 a day. She has had a couple of headaches over the last week but we were told yesterday that this is part of going off the steriods not anything related to the tumour.
Her blood counts are still low but her white blood cells (for fighting infection) is on the up swing now. Her platelets (for blood clotting) are still low but nothing to be concerned about yet.
She is back to school part time again. She has physio 3 days a week and finds those days to be tiring so she is trying to go the other 2 days. She is very excited to be able to go to school and be a kid again, not to mention that in grade 8 there is too many fun things to do. Her physio is going well and her leg and arm is getting stronger.
Thanks again for the support and love we are receiving from this great community!!!!

Rona

April 22

2007-04-22T18:20:00.000-07:00

Hello all
Things are going well here. Caitlyn is still having physio/occupational therapy 3 times a week which is proving to be a great benefit to her right side. Her hand is becoming more and more useful and her walking has improved. The extremely nice weather this weekend certainly helped also as she was out playing basketball, baseball and on the trampoline (with help). All of these are helping her regain the strength in that right side.
She was feeling well enough to go to school this week, but her White blood cell count was low making her more susceptible to infection so I kept her at home, much to her dismay. She found it a little boring! Thanks to friends and family to help keep her company when we were at work.
We are going back to Toronto on Tuesday of this week as she has testing all day on Wednesday for a neuropsychological assessment which will assess her needs for school. Then we are back down to Toronto again the following Monday for an appointment with her neurosurgeon and her oncologist.
Well best go and thanks again for all the prayers and help thus far, it is certainly helping!!!

Thanks
Rona

April 16th

2007-04-16T20:13:00.002-07:00

Hello all
All is going well here at home. Caitlyn finished her first round of chemo last Monday night. She faired well from it. She was more nauseated from this round and laid around for the weekend, but is feeling better now. She now has 37 days off of chemo and is having blood taken weekly, which last weeks was still very good and all within the normal range.
She went to school last Friday for the afternoon which went well, then went to the show and to a friend's house. She slept alittle more to make up for it but had fun while doing it. She is planning on going to school a bit more this week and we are in the process of getting some things in place to help her out with her school work.
Physio and occupational therapy is continuing and going well. She has weakness on the right side of her body so is exercising and strengthening the leg and arm.
Thank you to all who have supported us so far in pledges and joining us in Meagan's walk in Toronto on May13th to raise money for pediatric brain tumour research.

Until next time
The Cobeans

Update on Appointment

2007-04-06T04:57:00.001-07:00

HOORAY!!!!!!!!!!
We were at Sick Kids yesterday for Caitlyn's MRI and check up. The MRI was to assess the tumour since the radiation and 1st round of chemo. The tumour has SHRUNK!!!!!!!! and the swelling of her brain is completely gone. The doctors were quite pleased. Now we can get her completely off the steroid that she has been on!!
So last night was her first night of the second round of chemo. The chemo she is taking is in pill form, so we just administer it to her here at home. She takes it for 5 days then will have 37 days off. This 6 week cycle will repeat then, 5 more times. That will take us until December or so but that is okay if it keeps it at bay. They will be doing a MRI every 3 months to assess the tumour, but so far so good!!!!!
Certainly put a smile on all of our faces!!!! :)
On another note, there is a Walk being held in Toronto on Mother's Day to support BRAIN child which is an organization for brain tumour children and their families. This event is an enormus fundraiser for brain tumour research. We are forming a team to attend this event, so if anyone is interested in attending with us, please email us at cobeanclan@bmts.com . There is a website to explain this walk a bit better and it is www.meaganswalk.com
Thank you to all of you for all the ongoing support and prayers you have gave us.

The Cobeans

April 2nd

2007-04-02T19:42:00.000-07:00

Hi all
Here we are home from Disney. What a trip!!!!!!!!!! We were at a theme park everyday. Most days didn't start until 11 am and we were back to the resort by 5 pm for a nap. We had a great time!! The Children's Wish foundation had everything planned and made the trip a wonderful experience. What a great group of people at the Wish foundation. A great big thanks to Angela and Sarah at the Children's Wish Foundation for providing our family with such a great experience.
Caitlyn is doing well. She was tired from the trip but she did nap most days while we were there. She has a cold right now which is making her even more tired. We are hoping that it is better by Thursday when she goes back to Sick Kids for a MRI and a follow up with the oncologists to start her on the next round of chemo. Yes, it has been 4 weeks since she finished her radiaiton, and it is hard to believe. This time the chemo will effect her blood counts and make her more suseptible to infection.
She returned to school prior to Disney for a couple of part days, but she is not likely to go to school this week, as we really want this cold to clear up. She also met with physio and occupational therapy this morning so she will be starting this week with that and hopefully regain her strength in her right side.
So best go and will update all after the visit this week.

Rona

March 19

2007-03-19T19:39:00.000-07:00

Hi All!
Here we have been home for 10 days and loving it! Caitlyn is doing well. Still tired but not quite as much as before. She spent the March Break just hanging out. She went to a scrap booking class one day and to her sister's hockey tournament in Mitchell on Thursday to Saturday, spending some time in the hotel with the team.
Well today she went to school all day (a little tired after school but nothing a 2 hour nap wouldn't help).
We are currently on her 4 week break from treatment and are trying to decrease her Decadron (for the swelling in her brain). We are currently down to 4 mg a day from 12 mg a day when she finished treatment. She will be having a MRI sometime in the next 2 1/2 weeks and has a follow up appointment on April 5th to assess the tumour and to start her on the next round of chemo.
We are currently counting down the sleeps until Disney world also and everyone is very excited.
Well we will update the blog following the trip to Disney to let everyone know all about it!!!
Talk soon
The Cobeans

March 9

2007-03-09T20:27:00.000-08:00

Hi all
Caitlyn is done!!! Her first round of chemo finished last Sunday night and her radiation finished on Wednesday!! We stayed in Toronto until today as she had an appointment yesterday with oncology and today with her orthopedic doctor (who fused her ankle in December), then we headed home in the sunshine.
She is feeling much the same, tired! But very excited to be home for a change. She has a follow up on April 5th with oncology and she will have a MRI prior to that to assess the tumour. If all is well, she will start into the next round of chemo which she can do here at home.
Caitlyn is now looking forward to her trip to Florida from the Children's Wish Foundation that we will be taking later this month before she starts the next round.
So, all is well, and we are glad to be home and a family again. It will take some adjusting again! Thank you everyone for all the emails, entries on her blog and calls, they all helped to make the last 7 weeks go by quickly!
Thanks again
The Cobeans

March 2

2007-03-02T07:46:00.000-08:00

Hi all
Here we are with only 3 radiation treatments left! Hard to believe that we have been here 6 weeks already!
Caitlyn is doing well still. Tired! She has been to physiotherapy and occupational therapy this week for the weakness on her right side. The weakness is subtle and as Caitlyn looks back she believes that the leg weakness has been there all along, but with being in a cast on the left leg it was hard to assess until she got the cast off. The feeling is starting to come back with the excerises and the massaging of the leg and arm.
The doctors are starting to decrease her Decadron (steriod for the swelling in her brain) again. The hope is to get her off them completely, but this is going to be a gradual process. The doctor is impressed though, with the little weight gain that she has had during all these steriods which usually increase your appetite and cause weight gain.
Caitlyn will be finishing this round of chemo on Sunday and radiation will be over on Wednesday. She will then have four weeks off from treatment and will start into the next round after that, which involves being on chemo for 5 days every 6 weeks for 6 rounds. This chemo is going to be by mouth again, therefore we can complete that at home with regular visits to Sick Kids, but at least we will be home with the rest of the family.
Thanks again for all the comments, they certainly bring a smile to Caitlyn's face when she reads them.

The Cobeans

February 24

2007-02-24T19:16:00.000-08:00

Hi all
Finally on again! I have been trying all week and actually had this blog written twice and the connection crashed just as I was ready to post it. One more try!
Caitlyn had a good week again. Only 8 radiation treatments left!!!! Far cry from the 33 that she started with. We have 2 more weeks left in the big T (as Caitlyn calls it). She is finding herself more tired as the weeks go on, but it really hasn't crushed her spirit. She is having a little trouble with her right hand and leg/foot that started last weekend. The doctors are wondering if it is due to the decrease in her Decadron (the steroid used to decrease the swelling in her brain) that they had done about 2 weeks ago. So this past Monday they increased it back up and the symptoms seems a little less. There is a possiblity also that it is caused by the radiation and will resolve after it is over. Anyway they have hooked her up with occupational and physiotherapy.
This past Wednesday night Caitlyn and I went to a Mississauga Aeros and Brampton Thunder game at the Powerade Center. Sami Jo Small, the goalie for the Aeros had invited her and arranged for her to meet 3 more of the Aeros and 3 of the Thunder players that are members of the National Women's Hockey team. What a great time! They gave her a stick, a couple of hats, and some autographed photos!!!
Then on Thursday, Emily, Alanna, and Tessa came down to Toronto with their mothers to celebrate Caitlyn's 14th birthday. We went shopping on Thursday and Friday looking for grad dresses. They were successful and had a good time.
Well hopefully this blog will go through and I will update again as soon as possible.
Rona

February 17th

2007-02-17T05:29:00.000-08:00

Hello all
Sorry for the delay in entering on the blog. Our wireless internet connection at the Ronald McDonald house has not allowed me to get on to post a new entry.
The week went well. 20 radiation treatments down and 13 to go!!! She remains tired but her blood count remains good, so that is a plus.
Ronald McDonald house is great. Alot more room to roam in, and there is activities to do daily. Having a kitchen to cook in is wonderful too. There is even a school within the Ronald McDonald house that Caitlyn is likely going to attend while down there.
So we are home for the weekend to spend some time with Dad, Dylan and Bryanna. Sometimes the week seems long for both ends of the family.
This weeks excitement on the hockey scene was having an entry on the blog from Sami Jo Small and a phone call from Hayley Wickenheiser. Caitlyn also received several momentos from Hockey Canada and the Ontario Womens Hockey Association. All these have put a smile on her face.
Well, we will attempt to post again mid week providing the internet connection allows us.
Thanks for all the entries and emails received they all bring a smile to her face.

The Cobeans

February 11

2007-02-11T16:10:00.000-08:00

Hello all
We made it home for the weekend. The sun came out on Friday and it was a beautiful drive home. Wow is there a lot of snow here!
Caitlyn has had a good weekend. She went to the public school on Friday and shaved her hair all off in front of her friends. But not before two good friends did the same, hats off (or hair off) to Rebecca McLean and Wendy Huys who shaved off with her. What a great support! Wendy has raised close to $1500 for Cops for Cancer. Why to go!!!
Saturday, Caitlyn went to her hockey game and sat on the bench with them. Good game girls. Then it was off to the show with some of her friends.
Today she had a big nap to make up for yesterday.
She has been feeling about the same, tired but otherwise, well. Caitlyn had a surprise phone call on Friday from Cassie Campbell, the captain of the Team Canada, womens hockey team that represented Canada at the Olympics in 2006 and 2002. What a thrill to talk to her!!!!!!
We are moving into the Ronald McDonald house tomorrow. Caitlyn is thrilled!! There will be activities to do now and people to meet.
Best go and get ready to leave tomorrow. Thanks for all the inspirational emails and comments on the blog. They are a boost!

Rona and Caitlyn

February 8

2007-02-08T06:31:00.000-08:00

Hello again
WOW, what a response from the article in the Toronto Star. Thank you to Lois from the Toronto Star for such a nice article. It certainly put a smile on Caitlyn's face, as well as all the comments on the blog of inspiration and well wishes.
Caitlyn is doing very well. She is feeling good, other than tired which seems to be even getting a bit better. Basically we have been just attending her radiation appointments this week. Today, though, she has an appointment with her oncologist at Sick Kids after her radiation. This is a weekly visit when they check her blood counts. Her cousin Janet and her little boy Quinton is coming for a visit this afternoon which Caitlyn is looking forward to.
The shave off at the high school has been postponed until next Friday the 16th, due to the fact that our schools at home have been closed or no buses all week due to the snowstorms at home. By the way, the sun is shining here in Toronto. We have almost forgot what snow looks like!!! Caitlyn is planning on shaving her head tomorrow at her class, though, weather permitting. Caitlyn's hair will not wait until next week as it is falling out continually.
She is excited yet slightly nervous about shaving her head tomorrow. The wig is ready as is the winter hat!
Well, thank you to all who have sent comments to Caitlyn and our family through the blog, it is certainly nice to read them all.

Rona and Caitlyn

February 5

2007-02-05T18:29:00.000-08:00

Hello everyone
Here we are starting week 3, day 11 of 33, she is 1/3 of the way there. We are still at the Day's Hotel. We have been trying since Jan 16th to get into the Ronald McDonald house. The Day's hotel is starting to feel like home. Isn't that terrible!!!
Caitlyn is feeling good. Still a little tired, but nothing a hour and a half or two hour nap a day won't fix. She is starting to loose her hair and hoping to still have some for Friday's shave off at the high school. She had an appointment today with her neurosurgeon, as her 4 week check up. He was happy with everything and will see her again in 8 weeks as another follow up.
Caitlyn had a great weekend. Thankfully we went to Sarnia for Bryanna's hockey tournament because I am afraid if we had of went home we would still be stuck there with the big storm. No, we are not missing all the snow. Caitlyn and I drove from Sarnia this morning. The weather was not bad until Mississauga. White outs on the 401 and the 427 can prove to be scary, but we are here. Caitlyn didn't even know it was snowing because she slept most of the way here.
We received a call while in Sarnia on the weekend from a sports reporter from the Toronto Star. They want to do an article on Caitlyn and the benefit hockey game. This reporter was in awe as we talked to her about it. Anyway, the article is to be in tomorrow's Toronto Star.
Anyway nothing more really happening, but will update later this week.

Rona and Caitlyn

February 1

2007-02-01T17:12:00.000-08:00

Hello everyone
Hard to believe this all started on January 1 and we are now one month into it. This past month flew by.
Caitlyn is feeling better, a little less tired and stronger everyday. She had a check up with the chemo doctor today who told us her MRI of her spine was clear and her bloodwork today was perfect. Two pieces of good news!!!
Yesterday was another good day, we went down Younge street to a wig shop that we spied last week. Walked in for a consult and to see what they had, as we had the name of a few other shops and we found one that was perfect. Caitlyn is so excited to have found one. Again, thanks to the community, for making the purchase of this wig for her easier.
Well not much more to report but we have got 2 weeks in after tomorrow, and one week from today we will be almost half way through.
Well best go for now.
Rona

January 30th

2007-01-30T12:03:00.000-08:00

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

2007-01-25T13:26:00.000-08:00

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

2007-01-22T16:19:00.000-08:00

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

2007-01-18T16:54:00.000-08:00

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

2007-01-17T12:28:00.000-08:00

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!

2007-01-16T09:04:00.000-08:00

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

2007-01-12T20:16:00.000-08:00

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

2007-01-07T11:16:00.001-08:00

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

2007-01-07T11:12:00.000-08:00

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

2007-01-07T11:08:00.000-08:00

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

2007-01-07T11:03:00.000-08:00

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

2007-01-07T10:59:00.000-08:00

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.