2-10-94...my birthday!...and we flew home. Finally...leaving NY behind. We had spent a lifetime there. All I wanted to do was get home, and for things to be normal again. I wanted to never see NY again. but that was not to be...
I knew something was wrong after we made our last flight change in Kansas City. Curt was not himself...at all!...He complained of a headache...not alarming in itself...but he seemed to sleep too much and he was too groggy. This continued until the next day when we drove from Wichita to Dodge. He couldn't keep any food down...and he slept and slept. When I look back now I realize we never should have left Wichita. Too ignorant to know that a serious problem was developing.
Curt's condition worsens. He's screaming at me in the bathroom...vomiting....'MOM!...something's not right!'...finally I heard him...and I am ashamed to say...in my own NEED for nothing to be wrong, I just didn't want to face the fact that things were not alright. We panic ...and Curt is taken to the Emergency room. The Cat Scan shows fluid has built up on his brain and he is in serious trouble. Curt is placed on a Flight For Life to Wichita...and he sleeps the entire way. Emergency surgery is done at 4:30 A.M....the neurosurgeon said the fluid shot 20 feet when he entered Curts brain. The worse news was yet to come. Cat Scans at Wesley Medical Center show residual tumor and what appears to be a new tumor at the top of his spine. 'It' has spread.
A Hellacious was spent that week at Wesley. The Dr.'s communicated...and we would go back to NY....a month to the day...for resection.
3-8-94...We arrive in NY...dejavu tells us exactly what to do. The scenario plays itself...just like the first time. Once again we are told all of the tumor has been removed. I raise an eyebrow.... Dr. Jeff knows I'm skeptical. He does nothing to placate my fears. He knows it would be wasted energy to try and convince me otherwise. This time Curt is put 'under' in the Cat Scan room...to pin point the remaining tumor...I remember him looking just like an angel....coming out of that room...a large metal halo screwed into his head....and him sleeping so unaware. A small black lady stops me....touches me on the arm....she whispers 'he's so beautiful...God be with Him'...i've since wondered if she was an angel...
There is no way around the radiation. A consult with Dr. DeWitt makes us feel somewhat better. Curt would not be receiving the original dosage of radiation we discussed...she was very confident that he would be minimally effected.
4-18-94...The radiation begins...after hours and hours of measuring and re-measuring...permanent marks left on his scalp and spine. The positioning was so exacting and precise...there were times Curt would be asked to climb off the table...only to climb on it again...to begin re-situating him. Placement took 10-15 minutes...while he was zapped only seconds. I was never allowed in there with him. He was a trooper....marching in daily...5 times a week...for 8 long weeks. He befriended everyone there. You never knew what he would carry out of there...a candy bar....a baseball glove...the techs were so very generous.
5-22-94...Almost through the treatments, Curt is contacted by the Make A Wish Foundation . Curt wants to go to Disney World. And we, in fact....get there in July.
It's been 6 years, 7 months since Curt's diagnosis. He is in remission....and Curt appears to have minimal problems stemming from his treatments. In March of 97, he began having seizures and currently takes medication for those. We are told scar tissue is the culprit, and hopefully he will not have to take meds the rest of his life. We are in the process of beginning Growth Hormone Therapy...as the radiation hit his pituitary gland and he has stopped growing. This will involve daily shots...but he want's to be 6'3...I'm praying he get's there.
5-99...We've hit the 6 year mark...can't celebrate yet. With brain tumors, 10 yrs must be marked off the calendar...before he's considered within the normal range of *at risk*...holding our breaths for 4 more years...
Throughout Curt's situation, I kept telling myself...there has to be a reason....why...all this happened to Curt. I never really got my answer, but somehow, out of the mess...I have realized....what an impact this will have on Curt's adulthood...his attitudes and his ability to shine anywhere he goes...a man yet still a child..wiser than his years...a child... learning to be a man..so undefiled by all this unfairness... ....
5-2003 Curt is graduating this month. He's reached a goal. He was recently honored at our Cancer Support Group - Circle of Hope. So many people showed up and Jack Dalton read a proclamtion that was very special to Curt.
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