Lilly has developed a pretty nasty cough. Since she had H1N1 they are worried about pneumonia. So here we go again. Back to the doctor!

Lilly is finally starting to feel better. She is still not very interested in eating though. Her hair is growing back and it looks so cute. I pray that the new scans will show improvement and we will finally be done with chemo for now. I pray everyday that my baby can finally have a normal life without hospitals and test and blood draws. She is such a sweet angel.

so currently we are are not doing anymore chemo. We are doing more scans at the end of March. If the tumor continues to shrink then we won't have to do anymore chemo. However, if it stays at 40% or gets worse, then definitely more chemo the first week of April.

This past weekend she spiked a fever of 104.4 and we had to go to the ER. Turns out she has H1N1 and is still feeling pretty crappy. She is not eating any baby food and wants held all the time!!! Hopefully she starts to feel better soon...

We have an appointment this wednesday at Hershey to meet with her Oncologists. We will discuss all the test results and then decide how to proceed.  I hate the "hurry up and wait". I feel like we are always waiting for test results.  They scheduled it first thing in the morning so we can do chemo that day if thats what is decided. Will make a new post when we know something.....

so the doctor called with the results of the tests... As we already know there are 2 main tumors instead of one, making Miss Lilly an extremely rare case. The one tumor shrunk by 90%!!!!!  However, the other tumor only shrunk by 40%.  Therefore making it difficult to decide what to do next. Do we give her more chemo that may not make a difference and risk causing permanent hearing damage, heart damage, infertility etc.?  Or do we watch it now and see if it was shrunk enough to be significant.? Our oncologist spoke with the tumor board and other oncologists who work with Neuroblastoma cases. The deciding factor is whether or not it is still in her bone. It was in her cheek bones and the back of her skull. If it is still there then we will do more chemo, if it is not then we will discuss it again and possibly hold off on the chemo and reevaluate again in a couple of months. I was really hoping for "yes or no" kind of answer but now we wait for the bone scan....

I havent made a new post in a while. It gets hard sometimes to put it into words. Lilly was indeed neutropenic and ended up getting several hours of IV fluids. The next day we were back for a transfusion because her red blood cell count was too low and she had several more hours of fluids.

Last week, both Wednesday and Thursday, we were there for a new CT scan and MIBG scan. This is the first full reevaluation since starting chemo. They need to see if the chemo worked and determine how much more she needs or if surgery is an option. The anesthesia makes her very sick and she vomited several times. We just wait for results.....

Called the doctor and they want us there immediately. They need to check her counts and see if she's nuetropenic. She has a fever and won't stop vomiting. She will probably need to be admitted and given IV fluids. Poor baby girl has gone through so much in her short little life.