This is the latest not I got from a friends mom, the baby is only 2 now and things have been really tough with the family.. PLEASE keep them in thoughts and prayers today.. Thank you...
we are in pediatric icu as we speak. Kayla took a hard fall yesterday. Ambulance to Brookhaven who took a catscan who shipped us to Stonybrook immiediately. Medullablastome brain tumor and hydrocephalus. Prayer chain her out to everyone! She has not stood up, eaten, sat up nothing in 24 hours. The fall really triggered the tumor. Emergency surgery Sunday 7/2/06 tomorrow! Chemo to follow in a week or so.Pray like you never prayed before! Hugs and prayers always, Momma
****UPDATES****
Ok.. First I want to thank you all for your outpouring of love, support and prayers..
Secondly I want to apologize for not updating sooner, as things have been kind of crazy and up in the air-- were they going to operate, they operated, was it better or worse, etc... So here's the latest:
Kayla had her first surgery and it went well. The Tumor they found in the Cat scan did not reveal a asecond tumor slightly above the other one. The tumors were wrapped around the brain stem & major artery supplying the brain with blood, so they couldnt remove the whole thing.. They wanted to monitor her hydrocephallus and see if the tumor let go of the brain stem.. If not Chemo would start in hopes it would shrink it or at least loosen the grasp.
The hydrocephalus has not subsided, and the tumor needed to be operated on again (not sure of the details there).. The letter I got this evening from the babys grandma is below:
Kayla had another operation yesterday 3 total, totalling 25 hours of surgery. The doctors hope they got it all. One tumor definitely, the second one we hope, the hydrocephalus is not letting up. They have a catheter coming out of her skull draining big time. If it doesn't slow down by Friday they are going in again to put in a shunt! Now her brain juices are infected, she has a urinary trac infection, an upper respiratory infection and now they say she may have diabetes, we're waiting for the results of that one. Chemo is scheduled to start in 2 weeks for minimum 6 months. Put her on Prayer chains big time. The phone got shut off because the tv and phone cost $10 a day. We've been here 13 days. Too much money! They shut us off because we owe them and do not have it. So no connection to the outside world and we watch the same Dora and Barney video all day long! AHHHHH! Love you all! Keep in touch via e-mail, I will write back when I get the chance! Hugs and prayers always, Momma
She is in StonyBrook still, and at least they have a computer in the lounge area.. I cannot believe that it costs that much and they have to pay for parking too, not to mention food.... They havent left but once for clothes.. You have no idea how helpless i feel 1500 miles away.. Thank you ladies for all of your prayers.. as you can see they are still needed.. more now than ever before.. I promise I will keep you all posted as I am informed..
