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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.
On December 16th, 2003 Cassie was diagnosed with a brain tumor, when she was almost 6 months old. Her initial symptoms were related to the tumor originating in the hypothalamus. Along with vomiting and hydrocephalus, she had problems gaining weight and appetite loss due to the location of the tumor. She was admitted to the hospital immediately and had her cyst drained on December 18th, and a craniotomy with a biopsy and tumor debulking December 19th. They were able to remove 60-70% of a golfball- sized tumor at that time.
When the test results came back, it was discovered to be a very rare tumor called a Desmoplastic Infantile Ganglioglioma (DIG). The surgery affected her Optic Chiasm, damaged her hypothalamus, the pituitary stalk, and half of the pituitary gland. This type of tumor has affected less than 100 children ever, worldwide. They usually occur in the temporal lobe and have a good outcome. However, the survival rate drops significantly when it is in the suprasellar area, as in Cassie's case. Although her tumor is not in a rare area to have a brain tumor, it is very rare for this rare type of tumor to occur in the area where hers resides. There have only been 2 other cases of DIGs that have been reported in the medical literature, that are in the same area as Cassie's: the suprasellar area or Diencephalon and both children unfortunately passed away. Although considered “low grade” it is a very unpredictable tumor and can grow rapidly, unlike other truly low grade tumors. In addition, the area where hers occurs, which affects the hypothalamus can be considered “malignant by location.”
Cassie’s had 15 months of intravenous chemotherapy once a week with a two week break after every 4 treatments, beginning in January 2004 through May 2005. Her tumor remained stable for almost two years and then started growing rapidly in February 2007, almost tripling in size in three months. Cassie is on a different chemotherapy drug this time around and it is oral, rather than intravenous. She tolerates it very well, but her immune system is affected. She also receives intravenous Immunglobulin Treatments every 2 months. She has been receiving these for a couple of years. In addition to having a brain tumor, Cassie was exposed to Lyme Disease in utero and suffered very high fevers, night sweats and balance issues prior to her treatment for Lyme Disease. Thanks to her wonderful Lyme Doctor, she no longer has these problems. She still needs IVIG, most likely as a result of her exposure to Lyme. She is also on antibiotics to continue to fight the Lyme disease.
Cassie needs several lifelong medications as a result of the damage from her tumor and the surgery. She takes DDAVP shots for Diabetes Insipitus, Growth Hormone Shots for Growth Hormone Deficiency, Cortisol (a steroid) for Adrenal Insufficiency, Synthroid and Cytomel for Hypothyroidism, and a sleep medication since she is unable to sleep much on her own, as a result of the damage to her hypothalamus. She also has Hypothalamic Dysfunction. For information on what is affected when the hypothalamus is damaged, please see this website: http://www.nlm.nih.gov/medlineplus/ency/article/001202.htm.
Some of the conditions she has - Diabetes Insipitus and Adrenal Insufficiency are life- threatening. Her electrolytes are very easily affected when she gets sick and that has to be carefully monitored. Cassie is on medications to help her immune system, and takes chemotherapy, which she receives 21 out of every 28 days of the month. She wears glasses to help her with some of the visual damage that happened as a result of the pressure of the tumor on the optic nerves and also, the surgery.
We are blessed that although the tumor was initially growing on chemo, during month 5 of her treatment, it stabilized. She most likely will be on her treatment for another 8 months to 15 months. The goal is to buy time and avoid radiation for as long as possible, and even better, to have the tumor start shrinking. There are no guarantees with this type of tumor, aside from complete surgical removal. However since her tumor is in a different area than almost all of the DIGs, it is very dangerous to remove more of hers and that is not recommended. We keep praying, hoping, and believing in many miracles for her.
To donate to the Ride for Kids and access Cassie's firstgiving page, please log on to http://www.firstgiving.com/martinez-family
Journal
Monday, October 6, 2008 9:46 PM CDT
Hi Family and Friends!
Thank you to all of our friends and neighbors who came out to support Cassie and kids like her. There were 7 childhood brain tumor "stars" who talked about their lives and thanked all the generous and compassionate people who make this event happen. Forty years ago, surviving a brain tumor was rare, but today there are more survivors because of events like the Ride.
Cassie had a blast once again and she got to ride in the side car with Ethan, whose twin brother passed away from a brain tumor almost 2 years ago. Our friend Gary and his son Trey were in the motorcycle carrying us in his side car. It was a beautiful day and a terrific event once again.
We can't thank you enough for all the donations that will go to brain tumor research. We got to talk with Jerry from the company headquarters who always hosts the event and he said that the Duke doctors/researchers have told him that they feel that the cure is only 10 years away. Why not: the most common type of childhood leukemia had a 10% survival rate 20 years ago, and now it's survival rate is 90%! So, thank you to those who care about the kids and for making the dream of a cure become a reality.
We will be adding some ride photos to the site soon.
Thanks again!
Love, Kristen, Rick, Robbie and Cassie
Read Journal History
Links: http://www.cancer.gov/cancertopics/pdq/treatment/child-visual-pathway/healthprofessional/allpages/print#Section_45 Information about Prognosis
Cassie has a mixed glioma WITHOUT Neurofibromatosis, in the hypothalamus
http://www.rare-cancer.org/desmoplastic-infantile-ganglioglioma/ DESMOPLASTIC INFANTILE GANGLIOGLIOMA.
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