Preliminary Report-Neuroblastoma still in Tumor :(

Raylee is moving forward with recovering from surgery. The afternoon after surgery they moved her from PICU to the CSU (Children's Surgicial Unit). She was doing super and the charge nurse in PICU said they love it when kids have a short stay in PICU. In CSU we have moved rooms 3 different times. The first time was because the patient next to use had a weird bacterial thing going on. The second time was because they had sent 15 kids home from CSU in one day and they closed the pod we were in, in order to keep the nurses close to the patients they moved them closer together. I insisted we were not by the child with the weird bacterial thing because of Raylee's low immune system. They told us they would give us a really nice, big, and newer room by the chidren who are recovering from heart surgery. They said this pod has no kids with any infections or bacterial issues. The room is one of the best we have had. Raylee has been admitted 5 times now since the end of May, we have stayed on every floor and in almost every unit now....except the infant and newborn units of course. We are happy we weren't placed in the ICS unit (Immunocompromised Services) this time, as it really does feel like you are in lock down there.

Yesterday they removed her IV from her hand and began using her central line. They also removed her cathedar and epidural. She also was able to begin eating. Her diet so far has consisted of Gold Fish crackers, Oreos, and chocolate milk. Her surgeon came to visit her and brought his children to meet her. It was really awesome. Raylee looks away when he enters her room and she will not talk to him. (She is this way with all the staff here and gets upset when anyone with scrubs on enters the room--even the housekeepers because they wear scrubs.) Eventually as she gets older I am sure she will appreciate what he has done for her. He is an amazing surgeon! We couldn't be happier with the results of the surgery! The surgeon himself said it went better then he could have imagined!

The surgeon had received a preliminary report from Pathology and the tumor did show neuroblastoma cells. This means the Chemo she received did not kill all the cancer cells. We were hoping it did since the tumor sample reviewed during surgery (frozen sample) showed no neuroblastoma. Since there is neuroblastoma in the tumor still....this could result in at least 2 more rounds of post surgery Chemo. The surgeon hopes since he did remove all of the tumor that she does not need any Chemo--this is what we are hoping too. This is up to Oncology to decide however. We will meet with them soon to know what the next step in Raylee's treatment plan will be. At least whatever it is, it will be so much easier to deal with than the thought of her still having that tumor inside her. I really hate that thing as it was trying to kill my baby!

Last night Raylee experienced difficult going potty. Her bladder has been stretched and is enlarged. She will have an appointment with Urology in a few days. Right now she isn't able to go on her own and they had to give her another cathedar. I feel really bad for her and hope this heals. She also vomitted :( and no one knew why, maybe she ate too much. She wanted pancakes and sausage so we ordered pancakes and sausage...she had three small bites of pancakes and a few bites of sausage. The surgerical team who examined her this morning said during surgery her bladder was moved around a lot to resect the tumor and it takes a long time for it to heal. All we can really do is wait. We hope her bladder goes back to normal and does not have permanent damage. We also hope she does not get an infection, UTI, due to having a cathedar. An infection may extend her hospital stay or, if she is released it may mean once an infection reveals itself--she is admitted again because of her low immune system--typical for oncology patients.

Raylee you are a fighter....it is so difficult to see you go through pain and take your first steps after the surgery. It is difficlt to see you miserable from being ill. But your doing this so gracefully and with so much will!! And you are doing this with strength and endurance. You are such an example for everyone to know that LIFE is precious and worth fighting for! I am starting to understand more about why Christ said to be like a little child.