We are scheduled the next day to meet with the best pediatric brain surgeon in the country. He has a corner office and we sit down. He proceed to tell us and then show us what he thinks the tumor is. Simpley put the tumors he believes it to be are nasty and fatal. he's "not in teh business of butchering children". "With this type of tumor we are talking about hitting the lottorey for long term survial". He's shows us image from the CAT scan. Its our childs brain that has a black mass that appears to us to be 1/3 of her brain. WE are told surgery would be that day, it should take about 4 hours and he will do everything he can but will not remove any tumor if it is attached to the brain steam. or surrounding sturctures.
Later that day we walk down the halls of the PICU transfer to a quite elevator and wait with our daughter for her surgery. She leaves us without a tear and we proceed to wait for the outcome. 4 hours surgery maybe more. WE bunker down... read magazines try and not look at the clock. 2 hours later the surgeon appears. Talk about fear running over your body. Good news he says, she did great, the tumor is not what I thought it was it appears to be something we hardley discussed. The surgery was bloody so I had to work fast but the tumor appears to be an ependymoma. " Its odd to dance in a childrens hospital ... an overcomming of joy that was almost as powerful as the day befores gloom.
We would wait almost two weeks for a final analysis but it was in fact a grade 3 empendymoma. Fully resected.
Thursday, September 20, 2007
CHOP DAY 1
We arrive at Childrens hospital through the emergency room in decent spirits. At wrose maybe her kidneys are bugging her and I am going to have to give her one of mine... who the heck knows. But thats being over dramatic its nothing that bad we think. This is a city hospital with the city people all around.... its packed. We are plesently suprised when the wisk us in and get us into a room. They tell us they are going to do several test to find out whats wrong.... Of course we recount time after time what an amazing girl lily is and how the journey so far had gone. They want to do a CAT scan of her to make sure everything looks ok, the ask if we can get her to fall asleep that way she won;t need to be sedated. Lily doesn;t fall asleep but she remains still and the CAT scan is taken.
What happens next has never been described our recreated well enough in books, movies, or blogs. Two doctors enter our room. Lily is playing happily on the bed. The doctors look exactley how you never want a doctor to look. "Brain tumor"" large brain tumor".... shock overcomes you. You hear your wife scream out... Time stands still and the reality of the situation is not only unimaginable but more overwhelming then yoru wildest dreams. It must feel that way before you die.
Several people over the next hour come and see us... a nurse hands us scriptures on hope. We meet our first brain surgeon he is kind and offers hope but little more. We wait to be transfered to the PICU.... we call family, we cry, we do everything to stay strong for our little girl.
Lily is happy as can be....
What happens next has never been described our recreated well enough in books, movies, or blogs. Two doctors enter our room. Lily is playing happily on the bed. The doctors look exactley how you never want a doctor to look. "Brain tumor"" large brain tumor".... shock overcomes you. You hear your wife scream out... Time stands still and the reality of the situation is not only unimaginable but more overwhelming then yoru wildest dreams. It must feel that way before you die.
Several people over the next hour come and see us... a nurse hands us scriptures on hope. We meet our first brain surgeon he is kind and offers hope but little more. We wait to be transfered to the PICU.... we call family, we cry, we do everything to stay strong for our little girl.
Lily is happy as can be....
The new life
I guess i should tell you why I started this blog. Well I am not sure 100% why but I feel i need to share my thoughts and feelings about what transpired next. May 2007 brought the marriage of my cousin to his long time girlfirend in Key West florida. The three of us went down to KEY west as our first real vacation since she was born. (all our vacation was used the previous year for her birth). The plan lands in Miami and we are driving down to Key west when the she first throws up.... motion sickness we assume and after a big cleanup we continue on down the road and make it to KEy west. The rest of the day is great... the next morning we feed her breakfast and she vomits again. odd but not concerning... later that day she vomits again and we think she must have got some sort of bug. She is still a little girl and has had a stomach bug before so there is no panic. As the bride groom kiss the next day Lily proceeds to empty her stomach on Tricia and her wonderfull dress... We think its the heat along with maybe some bug but decide that since we are goign home the next day we would be fine to see the pediatrician on monday. WE fly home with a bagfull of hotel towels hoping to avoid a vomitting session on the plane. I bought teddy grams and Lily sucks them down and does gret getting home.
We go to our peditrican first thing monday and they think its nothing more then the stomach flu. We are sent home with some pedialyte. The vommiting however return the next day and we go in for our follow up appointment. The doctor thinks she may have a urninary track infection so she is "bagged" in the office and I wait around for her to fill that bag up. Low an behold they find some bacteria in her pee. Yippee ! problem solved... she is given a strong antibiotic and sent home. "we allow one urinary tract infection, number two and she is going to have to get some blood drawn." I probably forgot about three other visits to the Pediatrician... they tell me later that in their entire career they may never see another baby like Lily.
The next day I get home from work and am playing with Lily down in the basement. her new faviorite toy is a chair that play songs when she sits in it. She was so close to walking before our trip to Key west I am trying to get her to stand up with just one hand. She struggles.... I chalk it up to not feeling well... I let her sit on the floor and play with some toys... after a minute or so she falls over. "just sick" i think... boy was she.
Tricia and I are chatting in bed that night and I tell her what happened down stairs... She snaps at me and tells me somethings wrong.... After all we have been through over the last year I yell back and tell her "the baby is fine" she is just sick.
Next mroning 9 am i get a call... Tricia is crying and she says lily can;t sit up.... I just leave work.
I meet her at our pediatrician... after a few moments the doctor walks in and examines the baby. WE recount our story and the doctor is nearly in tears... She tells us she is going to give us the adivce she would give herself. Go to CHOP go to the emergency room.... no more messing around. It could be alot of things and they will find out today what it is.
We go to our peditrican first thing monday and they think its nothing more then the stomach flu. We are sent home with some pedialyte. The vommiting however return the next day and we go in for our follow up appointment. The doctor thinks she may have a urninary track infection so she is "bagged" in the office and I wait around for her to fill that bag up. Low an behold they find some bacteria in her pee. Yippee ! problem solved... she is given a strong antibiotic and sent home. "we allow one urinary tract infection, number two and she is going to have to get some blood drawn." I probably forgot about three other visits to the Pediatrician... they tell me later that in their entire career they may never see another baby like Lily.
The next day I get home from work and am playing with Lily down in the basement. her new faviorite toy is a chair that play songs when she sits in it. She was so close to walking before our trip to Key west I am trying to get her to stand up with just one hand. She struggles.... I chalk it up to not feeling well... I let her sit on the floor and play with some toys... after a minute or so she falls over. "just sick" i think... boy was she.
Tricia and I are chatting in bed that night and I tell her what happened down stairs... She snaps at me and tells me somethings wrong.... After all we have been through over the last year I yell back and tell her "the baby is fine" she is just sick.
Next mroning 9 am i get a call... Tricia is crying and she says lily can;t sit up.... I just leave work.
I meet her at our pediatrician... after a few moments the doctor walks in and examines the baby. WE recount our story and the doctor is nearly in tears... She tells us she is going to give us the adivce she would give herself. Go to CHOP go to the emergency room.... no more messing around. It could be alot of things and they will find out today what it is.
where to start
I will try and post here about my life and my amazing daughter for as long as I see fit.
She has traveled an amazing road and has a wonderful full life ahead of her.
I guess I should start when my my wife went to her 30 week checkup for her pregnancy. It was one of those first warm days of the spring and we didn't have any idea what was about to happen. She had recently gained some weight but as any dad knows you don't question a pregnant women about her weight, especially when its your first child and you have no idea what pregnancy weight is. Long story short My wife (tricia) had blood pressure through the roof and more protien in her urine then her doctor had ever seen. simpley stated he told us to head home and get a few thinks and that we were going to deliever the baby sometime that week. When we got to the hospital he told her that we were going to have the baby in a few hours....
I remeber sitting outside the delivery room waiting while the prepped my wife for her spinal and feeling anxious but postive and ready to fight. Lily was there a few minutes latter. Screamed her head off before they preped her for a ventilator. I followed her to the NICU where the next ten days we had no idea if she would survive. I thought those ten days would be the hardest thing we would ever have to deal with, unfortunetly I was wrong.
2 pounds 14 ounces... she fought... she fought she fought.... She held my finger in her little hands and fought. after 10 days we could hold her it was amazing.
I could write on about this for days... If i did you would here about pumps breaking and the amazing turn around she had once her heart valve was closed. She turned around so quickley after that. Only one more real scare when she had a brain bleed, that turned out to be a low grade and nothing more then a good cry for mom and dad at home. We brought her home 8 weeks later just under 5 pounds. her car seat wasn't rated for a child that size but we made it home and she was the prefect baby.
We had a great year. She was behind on her height and weight but she starting to make it on the growth charts. We celebrated her birthday with friends and family and went over board. She was our little girl and she was happy and healthy!
She has traveled an amazing road and has a wonderful full life ahead of her.
I guess I should start when my my wife went to her 30 week checkup for her pregnancy. It was one of those first warm days of the spring and we didn't have any idea what was about to happen. She had recently gained some weight but as any dad knows you don't question a pregnant women about her weight, especially when its your first child and you have no idea what pregnancy weight is. Long story short My wife (tricia) had blood pressure through the roof and more protien in her urine then her doctor had ever seen. simpley stated he told us to head home and get a few thinks and that we were going to deliever the baby sometime that week. When we got to the hospital he told her that we were going to have the baby in a few hours....
I remeber sitting outside the delivery room waiting while the prepped my wife for her spinal and feeling anxious but postive and ready to fight. Lily was there a few minutes latter. Screamed her head off before they preped her for a ventilator. I followed her to the NICU where the next ten days we had no idea if she would survive. I thought those ten days would be the hardest thing we would ever have to deal with, unfortunetly I was wrong.
2 pounds 14 ounces... she fought... she fought she fought.... She held my finger in her little hands and fought. after 10 days we could hold her it was amazing.
I could write on about this for days... If i did you would here about pumps breaking and the amazing turn around she had once her heart valve was closed. She turned around so quickley after that. Only one more real scare when she had a brain bleed, that turned out to be a low grade and nothing more then a good cry for mom and dad at home. We brought her home 8 weeks later just under 5 pounds. her car seat wasn't rated for a child that size but we made it home and she was the prefect baby.
We had a great year. She was behind on her height and weight but she starting to make it on the growth charts. We celebrated her birthday with friends and family and went over board. She was our little girl and she was happy and healthy!
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