Cassandra Grace

Welcome to Cassie's Web Page. Please take the time to sign the guestbook- the messages are always so encouraging for all of us.

Cassie was diagnosed with a rare brain tumor on December 16th, 2003 and received surgery to remove 60-70% of the tumor along with chemotherapy for 18 months. Her tumor was stable for almost two years until a recurrence in 2007(it tripled in volume in three months.) She is currently on chemotherapy again and it is keeping the tumor stable. There are no guarantees with this type of tumor, aside from complete surgical removal, which results in a great prognosis. However since her tumor is in a different area than almost all of the DIGs, it is very dangerous to remove more of hers. For more detailed information please see the journal from Thursday November 13, 2008.

Cassie is the child featured in the National Ride For Kids Kit brochure that will be used for all of 2009's rides throughout the country: http://www.pbtfus.org/rideforkids/register/Ride_for_Kids_2009_ridekit.pdf.We hope that she can help raise lots of funds to help other children with brain tumors.



Cassie's Diagnoses:

- Desmoplastic Infantile Ganglioglioma arising from the hypothalamus

-frontal lobe brain injury (from the surgery)- difficulty with executive functions

-hypothalamic damage- from the surgery resulting in impulse disinhibition, emotional difficulty handling hunger, thirst, and sensory impulses, and change, sensitivity to heat, blood pressure disregulation

-Pituitary Damage- resulting in the need for lifelong supplementation of hormones, some of them being life-threatening as well

-Damage to her 3-D vision

-But best of all, the side effect we love the most is: she is alive, full of energy and full of love.


We are so grateful to the Pediatric Brain Tumor Foundation and the task force for everything you do! You really do make a huge difference in the lives of children with brain tumors. We keep praying, hoping, and believing in many miracles for her.

Many thanks to our family and friends for your prayers and support.



Below the journal are some links for other brain tumor warriors. The page only allows three so here are a few more:


Caiden Nichelson
http://www.caringbridge.org/visit/caidennichelson

Chase Hamm http://www.caringbridge.org/visit/chasehamm

Cassie's Angels- those who have passed on after their battle with their tumor:

Trinity Bright: http://www.forevertrinity.com



Jessica Randall http://caringbridge.org/visit/jessicarandall

Katie Metz
http://www.carepages.com/carepages/KATIEMETZ/updates

Julian
http://www.carepages.com/carepages/JuliansWorld/updates/1824534?ipc=mur

Journal

Friday, July 3, 2009 11:01 PM CDT

Happy 4th of July! The kids enjoyed a walk in a nearby city's square and all the festivities. Cassie loved the band of course. :-) We have been laying low the rest of the day. Fortunately no more vision loss and headaches or dizziness today. We have been giving Cassie a little less of her Desmopressin. Her need for this changes about once a month or even if her immune system goes up or down. She needs it very much but if she gets too much, there is a risk for seizures and too little there is risk for stroke. It is a tricky balance.

We are thankful that all she had today was irritability from time to time and none of the other neuro. symptoms. She is heading to camp with her brother- Neuro/Oncology camp and her doctor will be there and can keep an eye on her. She is excited for this and will even have guitar lessons! Robbie can't wait for the graphic design classes and of course the outdoors. He is our nature boy.

Robbie had some growth hormone testing done recently- an extensive 3 hour blood test that was run by Cassie's endocrinologist, who is now his as well. He failed the growth hormone test. Although he is growing, he is not producing enough of the hormone for his body and he is growing just a little over an inch a year (normal growth is 3 inches a year). He was 95t one point in time and now is only 25o he has dropped off his growth curve. Not as much concerned about him being tall, as not having the hormone and what it can do to affect sleep, focus and memory. The endo wants to run an MRI on him because his brain should be producing more of the hormone. He did have a very slight nystagmus in one of his eyes but nothing too great. He is scheduled for an MRI in a couple of weeks. Prayers would be very appreciated. Really think there is nothing to worry about but just in case...

Thanks and much love,

Kristen

Read Journal History

Links:

http://www.caringbridge.org/visit/skylarsokolowski   Skylar- Craniopharyngioma
http://www.caringbridge.org/visit/zacharyleiszler   Zachary- Craniopharyngioma
http://www.carepages.com/carepages/lexilou2004   Alexis- Neuroblastoma

E-mail Author: kannmartinez@sbcglobal.net

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.