If you are just now joining our story, abviously, already in progress, here is a cheat sheat to get you all caught up on the major events thus far...
March, 1970--Debi is born in Kansas City, Missouri.
October, 1970--Thom is born in St. Louis, Missouri.
1989--Thom & Debi meet at Ryle Hall Desk at the then named Northeast Missouri State University (now known as Truman State University). Thom fell madly, deeply in love with Debi (hey, it's my story, I can tell how I wanna right?)
1995--Thom & Debi marry at the Simpson House in Kansas City, MO on a muggy, hot June day.
January, 2000--Elisabeth Kennedy (aka Ellie) was born. Debi was in her doctorate program and was so ready to have a baby. She dropped out of the program and got pregnant that month. Ellie was born in at Swedish Covenant Hospital in Chicago about 4 blocks from the condo where we were living.
October 11, 2001--Ellie was diagnosed with a pilocytic astrocytoma on her optic nerve and hypothalamus (a long way of saying a brain tumor).
October 12, 2001--Ellie has emergency brain surgery to remove part of the brain tumor. This also happens to be Thom's 31st birthday.
October 12, 2002--We celebrate Ellie's one year after surgery date in Chicago with Celebration of LIfe.
April, 2004--The Kennedy clan moves to Madison, Wisconsin. Why? Because it sounded like a fun thing to do.
January, 2005--Ellie begins having trouble walking and goes back to wearing diapers. She walks sideways, as if her back were hurting her. A shunt is placed to relieve the hydrocephalus (too much water on the brain) she is experiencing.
January 2005--Chemotherapy begins.
March, 2005--Ben Kennedy is born on an Easter Sunday at home!
November, 2005--Chemotherapy is stopped because of its ineffectiveness.
November, 2006--Ellie takes a Make-A-Wish trip to Sesame Street. Can we tell you how to get to Sesame Street? Take a stretch limo to Queens. Fancy!
2006??--Shunt is revised (or replaced) due to a blockage. This was the same hospital stay when Ellie had a seizure, was given Valium and then went into respiratory arrest.
Summer, 2007--Ellie is hospitalized for Cerebral Salt Wasting. Basically that means that she is getting rid of her salt due to a brain injury. Originally we thought she was having a seizure, we found her in bed in the morning covered in feces, unresponsive. She was in the hospital for 2 weeks.
January, 2008--Trip to sunny Florida to celebrate Ellie's 8th birthday. Our great friend, Betsy C. joined us there for part of our trip. We are super great at vacationing and we adore hotels!
April, 2008--Another partial resection of the tumor (aka brain surgery) is performed. This time 50-60% of the tumor is removed. Ellie is in the hospital for about 2 weeks because of a seizure following the surgery. Thom said she was completely back to her self when she revived after her (10 hour?) surgery, but then she started having the worst seizure he had ever seen. The seizure led to her being intubated and sedated.
April, 2008--Ellie ends up in the hospital again because her electrolytes were all wacky doodle. One of the doctors commented that Ellie's salt level was higher than he had ever seen in anyone. Again, she had a major seizure that she was not coming out of and ended up intubated and sedated for a week. Her temperature was also way outta wack, one day it dipped down to 92 and later on it was up at 107. It was a crazy time! It looks as if Ellie's hypothalamus is no longer communicating with her Pituitary Gland. She also has no thirst and it seem like she doesn't process heat/cold in the same way. For example, she will continue to ask for 2 blankets in the middle of summer even if she is sweating. Here is what we are managing: 1. Thyroid 2. Steroids (she no longer produces them, so we are trying to replicate what her body would naturally make.) 3. Cerebral Salt Wasting 4. Diabetes Insidious (this is when your body gets rid of water). 5. Lack of thirst which means we must give Ellie water through her g-tube throughout the day. 6. Seizures--Ellie has not had a seizure since her last hospital stay.
Summer, 2008--Ellie develops Hypothalamic Obesity, a rare condition which typically takes years to diagnose because of its slow progression. Instead of being a slow gain, Ellie gains 20 pounds in 2 months. Going from a size 7/8 to a size 14/16. Quite a change from the way way underweight she was just 3 years ago, when her bummy had fallen off and her ribs were sticking out. We start taking walks to help her burn off more calories. Things seem to have stabilized. Fortunately, Ellie has no appetite, which makes it easier to keep her calories down. Many with Hypothalamic Obesity have difficulty stopping their eating. Ellie rarely even asks for food, making it extremely easy to keep her calories low. Also, Ellie finds her weight gain funny and likes to do a jiggly dance with her body.
Fall, 2008--Ellie starts elementary school and absolutely loves it. She races to get to school each day.
July, 2009--Ellie has her shunt revised due to increasing symptoms of nausea, vomitting, sleepiness. Shortest hospital stay as of yet--2 and 1/2 days!
2010--A year filled with hospital stays including 4 major brain surgeries, chemotherapy and a couple of shunt revisions. We averaged one hospital stay a month. Ellie began having a harder and harder time recovering. Several times 9-1-1 was called as Ellie was unable to wake up.
August 15, 2010--Lotta Joy is born!
January 13, 2011--Ellie passes at 6:34 am.
