NEGU'ing from CHOC!

Sorry we havent had much time to post. Bella needs care around the clock. Sleep for all of us is hard to come by with nurses and doctors in all the time. She has a few hours of pep in her but then the fever comes back and she starts the vicious cycle of chills and 102-103 temp. The fever and chills are more like 6 hours apart now versus 4 hours but the each take about an hour to get rid of them. She is on 3-4 antibiotics and an antifungal antibiotic and today they started treating her for the flu. The took a chest x-ray today and she is now on isolation. Her lungs sound clear but her breathing is extremely shallow. Her ANC/White blood cell count still remains at 0.

As far as her MRI results. They certainly were not what we had hoped for. The is something that is much bigger in the pineal area but we do not know if it is dead cancer cells or new ones growing. We spoke with Dr. Louden, Bella's Nerosurgeon briefly on Thursday (prior to her nosebleed). Thankfully he was able to squeeze us in before a surgery. Unfortunately we had Bella with us since it was a spur of the moment meeting, so it is hard to ask all the questions we want because her ears sure can perk up at times. He needs to go in and do a biopsy but at the same time he will try to take out as much of the tumor as he can. He says he cannot get it all but he will do his best to get as much as he can. He is concerned of bleeding, also she could lose more of her eyesight and possibly all of her eyesight (Bella was there so I do want to confirm this with Dr. Louden). The surgery was scheduled for April 17th when her counts would have been high enough to withstand a surgery but now with everything that has happened in the last couple of days, I am sure this surgery could be delayed.

On a happier note, we had a better Easter than expected. The Winklemans showed up for a surprise visit as well as two new friends that we just met -Trisha and Melinda. On Saturday we got to visit with our dear friend, April as well as Bella's grandma and grandpa. Bella enjoyed the company and always perks up with visitors. We feel so blessed with all of the well wishes and the generosity of everyone!! Thank you all!!

Today we cannot have any visitors. For the future, since she is in isolation, I need to find out if we can have visitors. We will keep you posted!

NEGU'ing from CHOC! ♥ ♥ ♥
Val