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.

Lilly has been vomiting all day and she has diarrhea. She's not keeping anything down and she's very fussy.  I am worried that she is getting dehydrated. I think her last wet diaper was last evening.  we have some pretty strong medicine for her but she keeps bringing that up too. Tonight I gave her a pedialyte popsicle. She loved it! She is teething so it felt good on her gums. I sent Matt to the store to get some liquid pedialyte so she gets some fluids in her. We may end up in the hospital tomorrow.  I am also worried about Madalayna. I feel like she doesn't get as much attention as she deserves. She has a dentist appointment tomorrow that may need to be rescheduled again for the third time. I want to be supermom but its getting very hard.

Lilly has been up the past 3 nights vomiting. This seems to be the worse round yet. And on top of that she is teething. 1 tooth is almost completely through. I have been immensely stressed lately. Layna has been not feeling well and work has been stressful as well. I wish I could afford to take some time off.

Day 3 of chemo for the fourth round. Lilly was up all night vomiting. Poor baby girl. One of the drugs being used in this round is particularly potent and causes the most side effects. Our next clinic appt is February 2nd to find out if its working. Between now and then she will undergo several more tests.

We are at Hershey for our fourth round of chemo. She seems to be doing ok so far. Its amazing how routine this has become, and how much you learn while you are here. After this round we will be reevaluating and seeing if she needs more chemo or if she needs surgery. One of the chemo meds being used today causes bladder irritation and pain. We have to monitor her diapers for blood. She has two more days of chemo for this round. Then the side effects begin. She began growing some hair since the last round but it will all fall out shortly. She is so strong and happy for having to go through so much as a baby and not understanding what is happening to her. But that's one good thing about all this, she will not remember it, hopefully.

Haven't had much time to update recently. We had a great christmas. Lilly loved opening her presents. The rustle of the paper made her smile and giggle. She wants to chew on everything now so most of her presents are things she can safely chew on. We didn't do anything for New Years. We stayed home and I rocked Lilly on the rocking chair. She wants to be held constantly when she doesn't feel well. She seems to have bounced back better from this round of chemo. She vomits a lot but her counts have come back up. She has a mild cold but no fevers yet. If she gets a fever we have to go the hospital immediately. Tomorrow we go in for her Synergis shot and I am going ask if there is anything more we can do about the vomiting. It happened three times this evening even though we gave her the medicine. She brought all of it back up. But all in all it could be a lot worse. Next wednesday we start her 4th round of chemo.