Stella just said ow as she is sleeping and I asked if she was OK and told me she hurts in her dream. Pain control and Nutrition is what is keeping her in Roswell Park Cancer Institute right now! Her last fever was Saturday - but the mouth sores are so terrible that Morphine ever 3-4 hours wasnt enough - shes now on long acting Oxy with the morphine. She also has eaten so little or drank so little in the last week that she is now getting IV Nutrition (TPN) to help her get the calories and proteins and vitamins she so desperately needs to heal her body. Her white count is at .1 ... One Tenth. She has no ANC (Germ Fighters). Her platelets seem to be holding right now and her Hemoglobin (red blood cells) is 9.1. I guess well see if that holds or drops overnight. Stella has never been this sick before. She is still fighting a virus than is settling in her lungs and rattles when she coughs which also rips open the mouth sores (when she coughs they rip open). She needs to sit up and do two types of breathing to keep mucus breaking up and not turn into pneumonia. Stella has been having two constant dreams. Campfire pizza pies and her cat, Chloe. I asked if she needed to FaceTime her cat yesterday and it made her cry (all the pain had her crying for the whole weekend) and said it would make her want to hold Chloe more... The Pizza Pies!!! Oh My Goodness! With mouth sores and she still asked her dad to get the ingredients at the grocery and I made them in the floor kitchen and her TNT hurt so bad she didnt even try it but Im willing to get her or make her anything a his point! This morning I made her (unfilled) crepes! Yup... Crepes. She wanted to eat but the smelled wrong and cried and fell asleep from the morphine! I thought thy would be easier to try compared to pancakes since they are thinner and moister than pancakes. Oh well. I tried. I will try anything she asks at this point. She only at yesterday a few bites of Kraft Mac&Cheese because she didnt want a feeding tube down the throat and cried the whole time because it hurt. I am so thankful this nutrition can be put through her port in IV form. A couple bites of food every other day or so is not the 1800 calories a day needed to make cells and heal. She said she can smell it - I dont understand how but she didnt want it. Fear I guess. They are trying to get any kid home for Thanksgiving that they can. Looks like 3 of on the floor might be a concern. I have resigned myself to not care if we are home or at the hospital for Thanksgiving - I only care that Stella has her brother, dad and me by her side. Nothing else matters. Even if home being in a large group of people would be too much and we would have to bring an IV pole with us for the antibiotics every 8 hours and as well the 18 hours per day of TPN, IV nutrition. Stella cant have a Bone Marrow Biopsy until her ANC is 500 and shes sitting at 0. Only then will we know if she goes back to NYC for those engineered TCells then Transplant or straight to Transplant. I understand the testing came back for our 10 out of 10 match and its good, a 29 year old man somewhere in the world can save my girls life! The back-ups that are 9 out of 10 matches have to get further testing. I think that is everything except this one surprise Stella hasnt seen yet! Stellas Fishbowl a group of local people donated gift cards for our family and they decorated a beautiful Christmas Tree that was put up with my son, Nigels help while we were out! When I went home for 48 hours this weekend and Daddy was here with her - Nigel and I spent hours watching our tree and its lights and the major of Christmas! I wasnt going to put up a tree till we knew if wed be here or in NYC for Christmas but they wanted Stella to have as much magic as possible this holiday season and I cant thank these selfless friends enough! Nigel loves it! Stella will too when we get home! Thank you Stellas Fishbowl Friends 🐠🐟🐠 its keeping us swimming! Please enjoy your families this Thanksgiving holiday. Forget shopping for deals - life is too short to not share a wonderful meal with your friends or family! 💛 I am thankful I have my daughter to be here with us!
Posted on: Tue, 25 Nov 2014 02:45:23 +0000
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