So here we are only three weeks after Bailey’s surgery and I have nothing but great things to report! Sorry I have not posted sooner but things have been pretty busy to say the least. Needless to say the surgery was a SUCCESS. Not only did the surgeon remove the tumor near her windpipe and not only did he get it all and not only did all the biopsies taken during surgery from the “spots” on scans that were showing up in her neck and chest come back as negative for neuroblastoma, but she was able to keep her rib. It was decided during the tumor board meeting the day before her surgery that the rib needed more time to allow radiation to work and that it would not be removed. I did not find this information out until 1 hour before surgery so this was a huge relief knowing that she would be going in to surgery with positive news before it was even started. The surgery took a total of 4 hours and Bailey was a rockstar! She was out of surgery by 6pm and was drinking water by 9:30pm!!! The next day she was sitting up on the side of her bed and the day after she sat in a chair almost all day! I cannot tell you how much my little girl amazes me! Her strength and determination are unbelievable! Cody, Mimi and I were in complete awe at how quickly she recovered! With that being said we were out of the hospital on Sunday…. only 4 days later!
Chemo (irinotecan and temador) started on Monday only 5 days after surgery and she did great. We went into clinic everday, Monday through Friday, so Bailey could get her chemo. Thankfully she didn’t have any side effects from the chemo and she was able to continue her recovery without much interference. Radiation started on Wednesday of the following week and we are currently finishing up the last few rounds before heading home next week. We go twice a day for radiation and in between Bailey is doing schoolwork. My little girl is definitely holding her own! She is however getting very anxious to get home as we have been in New York quite a bit since November. She is very vocal about telling everyone here that she is ready for some boiled crawfish and cajun food…she is not a big fan of the food here!
We will get about 3-1/2 weeks at home before we head back here for scans and to start her humanized 3f8 antibody treatment if all goes according to plan. There are a few issues we are trying to work through in order for her to begin the trial so I am praying that everything will work out and she will start. In the meantime I have also been looking into other treatment options in case this doesn’t work out…so please pray that the perfect plan will fall right into place. She has also been fighting terrible allergies so that has made her last week a little trying for her to say the least. All in all we couldn’t be happier with this HUGE step in her journey once again.
Thank you all for your continuous prayers and support. Please know that we are forever grateful for everything big and small. I know that prayers have carried her this far and will continue to help her overcome this horrible disease. I know that the statistics are against her but I also know that FAITH bring MIRACLES…and that is exactly what we are believing for….a MIRACLE! Nothing is Impossible!
** On a side note we did get free tickets to Mary Poppins on Broadway and it was fabulous…definite must see if you are in New York!