"The Rainbows in Life Follow the Storms."

Paige was diagnosed January 7th 2003 with Medullablastoma (malignant form of brain tumor located in the posterior fossa). Paige has undergone a 56 week protocol of radiation and chemotherapy treatments.
Due to the size of the tumor, Paige has a complication called Cerebella Mutism (Posterior Fossa Syndrome) which has required her to learn how to do all CNS functions all over again. She is a very determined and positive young lady. We are very proud of Paige and her big brother GARRY. They follow the example set forward by the very inspirational Hellen Keller.

"Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence."

Journal

Thursday, April 30, 2009 12:37 AM CDT

Well, well, well, believe it or not - an Update! I know, I know... WAY TOO LONG!

MEDICAL UPDATE:
Well, since my last update, Paige has had her MRI and we will get the results next week when we see her Neurologist. Hopefully no news is good news! As far as her respiratory issues, well the continue to escalate. Pagie has had a few more respiratory studies and the results continue to depreciate. We had a meeting in early January with Paige's team of doctors; her Oncologist, Neurologist, Respirologist and Case Manager to discuss her respiratory status and it was not good. Her CO2 levels continue to rise and her oxygen levels drop although she recovers quickly. The problem being her C02 levels are now ranging in the 78 - 80 range and continuing to be an issue. It has become a RISK for her to sleep without her ventilator although she continues to struggle with it. Her doctors indicated it was now a necessity to wear her mask at night because her central apnea sessions were continuing to increase (athough not as lengthy as before, they are happening with greater regularity) combated with the high C02 counts she is now at Risk when at sleep. Her Neurologist indicated to Paige that she is a unique case and they don't know why her counts are continuing to decline. She should be plateauing or getting better this far out of treatment, but the damage to the frenic nerve is more complex than they originally thought. All to say, it's back to the drawing board and back to the sleepless nights and struggles with the machine. Her last sleep study indicated further acute C02 issues and we are waiting to have our consultation with the Respirologist. Her other issues have plateaued; her kidney results are being tested again in June, her thyroid is stagnant and her motor capabilities are likely where they are going to be.

She is now heavily involved in high school and loving it. She has her EA CARRIE, back into the mix and they are getting into trouble on a continual basis LOL. Apparently what is said in the elevator, stays in the elevator LOL. Paige started the year at high school with much skeptism but she has adjusted very well. She has been involved managing the basketball and volleyball teams, taking pictures for the yearbook and now is actively involved in the Relay for Life activities. She began the year integrated into various classes with her peers and has migrated to the vocational classes where she has found a good fit academically. She continues to take Ms Wilson's phys ed class and is very interested in the Sex education NOT! Ms Wilson has given Paige her own circuits to do and she has been playing badminton, taking self defense classes and recently be dappling with the kettle bells. Paige loves her English class with Miss Cox and is starting to enjoy math thanks to Mr. Rowe. She certainly keeps the 6 lads in her class under tow. Although she is tired when she finishes for the day, she is enjoying herself while at school. She has certainly taken quite a shine to the social activities; dances are a favourite for sure (and of course a new outfit is required for each social occasion - much to the chagrin of her father!)

As for Paige's brother Garry, well he is busy with school activities as well. This year marked the first time in over 30 years that the Senior Football team took the Valley championship. Quite an accomplishment for sure. The final game was 16-15 with the RAIDERS coming out on top. GO RAIDERS. Garry's minor hockey career has now come to an end. Amazing how time has flown. The team had an amazing trip to Finland/Sweden this winter and I'm sure I will hear all of the stories sometime in the next 30 years LOL. Apparently what happens in Sweden, stays in Sweden! Graduation is pending along with Prom in June so lots of photos to be taken.

Life has been very busy and although I have been neglectful updating Paige's site, I have still been active with the on line support group, the Brain tumour support group and the Candlelighters organization. I have been asked to speak at the annual Pediatric Oncology Group of Ontario Conference in November in Toronto where the session is highlighting pediatric brain tumours and the after effects of treatment. As for our friends on caring bridge and on the pediatric brain tumour board, so many continue with their struggles and challenges. We have lost some of our valiant little soldiers this year, and our hearts, thoughts and prayers go out to their families and friends. The longer we are associated with these groups, the more families we get to know and although many we will never meet personally, we do become friends and become involved with each others issues, challenges, highs and lows and we truly do connect worldwide now. You never realize how many young ones are affected by malignant brain tumours until you enter the world. Not somewhere you want to be, but what amazing people become apart of your life. Thank you to everyone who continues to ask about Paige and care about her health. I vow to keep her site updated on a more regular basis. To my online friends who are facing such difficult decisions - you know who you are - our thoughts and prayers go out to you! LIfe just isn't fair and we, as parents should not have to make some decisions that unfortunately are ours to make. Please know that we are all here to support you and be your shoulders to lean on. God bless you!

Until next time,
Patti (Paige's Mom)

Links:

E-mail Author: bob.dillabough@sympatico.ca

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.