November 29th Bella had her 2nd MIBG scan today and there is something showing up on the scan that is rather large. They are not sure what it is but there is something. They have moved her CT scan to 7 am tomm. morning to get a better idea. Please take a second and say a prayer for her. If it is cancer that they missed she will have to do another surgery, but right now no one knows what it is, and as a parent this is really scary.

November 30th After our big scare yesterday, they moved our 4pm CT Scan to 7 am and moved Bella's Bone marrow bio to 8 am. While Bella was still in doing the bone marrow bio the doctors came out to tell us they got the results back from the CT scan and its just fluid from her kidneys or her lymph nodes. Either way its is great news, best possible news it could be and honestly it is not a hard fix. Thank you everyone for the thoughts and prayers. Thank you God it is fluid and not another tumor like everyone thought

December 1st So if I had a nickle for every time I ask everyone for prayer....

Bella is running fevers 104'F they are running cultures; blood and urine. Personally, I think it is the fluid (which they are pretty sure is urine) causing the fevers but they can not do surgery to drain the fluid until the fevers are down. The surgeon will be come in and see us in the morning. Please pray the the fevers come down and that the tear which they think is in her kidney heals itself, if it does not heal itself they will have to go in and fix that as well.

December 2nd

It has been a rough day here at Shands. Bella has been screaming in pain having issues going to the bathroom, she finally went but there is still discomfort, plus she is throwing up, and fevers on and off. It is funny how when we are at home none of this happens and 12 to 18 hours after we get here she gets sick like this. The last 2 times we have come in this has happened, yet no one can give me

a reason. This is not the stomach flu, and it is not from chemo those excuses are used up. Something is causing the pain, and the throwing up and its is not the flu! That test came back negative AGAIN! Maybe checking into the 50 different medications they give her every time we walk into this place might be a good start but instead of doing that I got a reply of well if she is in that much pain we can just give her some morphine". My reply was no how about finding out what is causing this and stop giving me excuses. I am really aggro. with all this. With all that being said; The game plan tomm. morning is to remove the urinoma that is 7cm by 6cm and hopefully things will start moving up hill. While that is going on I am going to medical records to find out the medications they have giving to her the last 3 visits here. I think I know the one that could be causing all this, but I need to be sure.

 

December 3rd

Bella procedure to place the line to drain the urinomia went well but they think there is a leak so she is going in for another surgery. This time they are going to inject dye into her and see what is going on and add a stint. She is still sick throwing up and having stomach cramps. We did not sleep at all last night. The medicine to help relieve nausea was not even helping. Finally this morning t...

hey decided to put a tube down her nose and into her stomach to help relieve the air and liquid, hopefully this will work. It has been in for 45 minutes now and she is sleeping so I guess that is a plus. Lets see how long it takes her to pull it out again. I don't know what to even ask everyone to pray for anymore.

 

December 4th

So the procedure to put the stint in did not go so well, they were not able to put the stint in. They went in through the urentha and put a contrast dye into her to see if they could see if there was any more leakage into her body, and there is. When they did surgery to remove the tumors they some how cut the utreter which is the tube that connects the kidney to the bladder. So instead of the urine draining from the kidney into the bladder it is draining into her body. Which is the urinomia.
Tomorrow they will do another "procedure" and insert a tube into the kidney to drain it. This tube/bag will stay attached to her for the a month or longer. This way the urinomia will go away and all the inflammation from the urine will go down and they will be able to go in and fix the utreter