I would like to inform you of our family's serious problems. On January 4th, my daughter Kyle Cuiching had an appointment with the Dr. for her daughter Ellie. Ellie had been complaining of headaches for awhile. We all thought it was because she hated school, there were some boys that were bullying her. The headaches always happened in the morning right before school as she cried, "I don't want to go to school". But when the headaches started happening in the middle of the night, Kyle felt it was time to go to the doctor. She tried to get an appointment during Christmas break but the Dr. had limited appointments because she too was taking some time off.
When Kyle explained the problem to the Dr. she said, "take her right away for a CAT scan just to make sure".
Kyle went immediately to a Cat scan lab. As the CAT scan finished the attendant told Kyle, "we are leaving the IV tubes in and go right back to the Dr.s office". She knew that was a bad sign. When the Dr. was waiting for her in an office and Ellie was whisked right in front of others, Kyle became alarmed. When the Dr. embraced her with a hug and started apologizing, Kyle's world caved in. Ellie had a massive and fast growing brain tumor.
Kyle was to rush Ellie to Children's Memorial where the Neurosurgeon was waiting for her. He was staying late to see Ellie. The surgery was already scheduled for the next day. Kyle called me hysterical, so I told her to wait in the parking lot and I would come drive her. My husband Dave B. would pick up her husband Dave C. at his house and rush him downtown as well. Kelli would wait until staff was in place and meet us.
We met with Dr. DiPatri, our personal saint and he showed us the CAT scans. He explained the tumor was so large that it took up most of the right side of her brain. She already was suffering with hydrocephulis and that the ventricular fluid was almost completely shut off. She was just hours away from a coma or death. It was urgent that the surgery take place tomorrow. The good news was that Kyles' sister in law Myrlee works for a Neurosurgical group in LA at the Childrens Hospital of Orange County, she is a PA who actually does some of the minor surgeries and assists in the more critical ones. Dr. DiPatri actually agreed to a phone conference with Myrlee during our consult. When Myrlee started crying we knew it was bad.
Myrlee wanted to be on a plane to be there immediately for us but she had surgeries already scheduled for two days, she did join us on Thursday.
The surgery took nine hours. When the doctor met with us after completition he sadly informed us that he only got half of the tumor, as Ellie had started to bleed out and they had to close for her safety. Thank God for blood transfusions. He told us there would have to be another surgery but they had to wait a week, until her little body was strong enough. The next day when they needed additional MRI's it was discovered that Elli had Pneumonia too. So she was not strong enough for sedation, the MRI would have to wait. A CAT scan was ordered to check on the bleeding.
The week long wait was painful for all of us. Kyle stayed bedside round the clock, Dave C, (the Dad) had to work as he did not get paid if he didn't. I was there about 18 hours a day and sometimes 24 hours so Kyle could get some sleep, as well as Kelli, Keith and my husband. More blood transfusions followed as the brain continued to bleed. The second surgery, again 9 hours was successful in removing 98% of the tumor. The remaining parts were attached to vital parts of the brain and would be critical to remove. The next day we were informed that Elli suffered a stroke.
This is truly the short version, however, Elli is now home since Tuesday. She still needs round the clock care. Kyle's MS flaired up as soon as she got home so she is bedridden. All of this time brother Jake has needed caregiving and Kelli's three kids also need to be taken care of. My 82 year old mom moved into Kelli's house to help for a week. My ATA parents stepped up and took the kids for hours at a time.
The pathology report is not completed, yet so we do not know the long term prognosis. This tumor was the largest this world renown neurological team has ever seen. It is also a very rare type. The future is an unknown to all of us.
Many people have expressed an interest in helping. A lady who runs a foundation in out town has stepped up and set up a medical fund for Ellie. It it the Ellie fund. to find out more email hopeandfriendship@comcast .net the fund is accepting checks made out to Ellie Cuiching, via c/o Hope and Freindship, 721 Hickory St., Lemont, IL 60439. The foundation has set up a benefit dinner see attachment. They are looking for donations for a silent auction, If any of you have contacts with large companies that might donate. I will send a copy ,
We thank you for you concern. Patti Barnum, Ellie's Grandmother