Day 6

Busy day as always in the hospital. We spent a lot of today prepping to go home. (They want to try to get us out by Friday) They said even though we're scheduled for chemo once a week, that we'll probably end up at the clinic here in Fairfax at least 2-3 times a week due to Isabelle's blood count dropping. They've been teaching us ways that we will be able to tell : bruising, bleeding from nose/mouth, fever,being pale, lethargy, ect.) They said if we notice that to just call the clinic and if its just her blood count or platelets then they should be able to do it then and there. (then she could go home right after) If its after a certain time then we'd have to go to the hospital. They are going to schedule us to go to the clinic Tues or Wed. just to check her blood. If she gets a temp. of 100.4 or higher she will immidiatly have to be hospitalized. That doesn't necessarily mean she is sick, it could just mean she needs a transfusion. Right now shes considered neutrophenic meaning her immune system is compromised. Her overall blood count has dropped since yesterday, but they expect it to drop for a long time. They may give her another transfusion tomorrow or early Friday morning before her surgury to get her counts up, it just depends on how low they are.

Friday shes going to be put under to check her marrow and to be given chemo in the spine. Her recovery time is expected to be an hour. After that time they will give her the rest of her chemo through IV and mouth. If all goes well and her blood is good then they will let her go that evening. They are going to send us home with pain meds for her jaw. (side effect of the VinCRIStine chemo) We will also have prescriptions for morphine, numbing cream, steroids, and mouth wash.
-Chemo :
                VinCRISTine - given by IV
                 Intrathecal Cytarabine - given in the spine (has only gotten once and don't know if she will get it again)
                 DAUNOrubicin- given by IV
                 PEG-asparaginase- given IM
                 Intrathecal Methotrexate - given in the spine
For steroids shes going to get Dexamethasone which causes high glucose levels by inhibiting insulin from doing its job.

Our day : Lots of people spoke to us today, as usual. We ordered her a wig, just in case she feels insecure about losing her hair. (Shes known for her hair and she loves it so I really feel like its going to be hard on her) I felt bad because she asked me loudly what a little "boys" name was. The childs mom quickly replied with shes a little girl and her name is _. She was probably about 7. I felt so bad, but I know she knew Isabelle didn't understand. Isabelle was cranky 90% of the day. Her jaw pain wasn't as bad as its been. Sabrina visited and she had to leave early because she was a handful. She had a tummy ache and was full of rotten smelling gas and her gums are bloody and swollen. (those canines are not out yet!!) Isabelle perked up around 8pm. Her favorite nurse Erica took her for a walk. When she saw her crush Amil, she was like I want Amil to carry me. Amil carried her around for a while. They painted her nails and then she painted Amils. It was so cute! During that "down" time I filled Abel in on the day. He had gone home to "prep" a few things. I'm really tired, but I just wanted to write a few things on here!