Holy Cow…I am just realizing it has been over a month since I have updated! Sooooo sorry…I am really going to do better at keeping this site updated more regularly…Promise! So of course we are out of the hospital now and back at home for a couple of weeks. Bailey’s CT scans came back clear and the headaches were chalked up to low counts and of course pure exhaustion. Needless to say she was very happy to be able to go home. We came home on September 1st from Tulane and was able to enjoy a much needed long weekend at home for Labor Day. Thanks to all the rain we were forced to stay home instead of running the roads as we normally do when we are gone for so long. Bailey is a very determined little girl when we at home…she will think of any excuse to get out of the house to make up for lost time while she is stuck in a hospital room for weeks at a time.
So last week we flew to New York on Monday as she had follow up scans on Tuesday and Wednesday. Our trip was uneventful (thankfully) and we were happy to see some of our friends at the Ronald McDonald House as it has been a couple of months since we have been there. Scans went really well with the exception of the MIBG scan. I will just say that is a long scan to begin with but when the machine breaks right after the scan is finished and they can not save the image which means you have to repeat the entire thing…it makes for a very long 3 hours!!!! Thankfully Bailey sleeps through that scan and I just sit in a chair and watch her
So Wednesday we finished up scans and got really good news on our way out of the hospital. Dr.Kushner confirmed that preliminary results are showing she is CLEAR again!!!!! This means that dreaded disease is no longer forming tumors or lingering in her body…she is NED (No Evidence of Disease) status again which to us is like winning the lottery! Not only does this mean she is clear but it also means that she can get back on the antibody treatments that she was receiving before she relapsed. Definitely the best possible news we were hoping for!
With that being said her final results have not been confirmed yet but Dr.Kushner feels that those will show clear as well. I was supposed to get a call from them this week and being the persistent mother I am decided that I would follow up today…well thankfully I did because they have her on the schedule to receive 3f8 antibody the first week of October which confirms that tests were indeed CLEAR…oh how I love saying that…my little girl is CLEAR!!!!!!!!!!!!!
So once again we are gearing up for her treatments which means that the two year plan starts all over again…but by no means are we complaining! I would do this for the rest of my life if I knew that is what needed to be done to get her better. Bailey on the other hand is getting a little tired of all the travelling but in no way is she giving up. So for now we get to enjoy the wedding….which is this Saturday, Sept.24th! Bailey is very excited about this day as well as her mommie. We are so blessed in more ways than one. There is never a day that I don’t think to myself…WOW how fast life can change! I will say that before all of this started I never imagined being 30 years old and having to watch my daughter fight for her life each and every day. I will also say that never would I have imagined that in the middle of all the craziness I would be getting MARRIED! But if anyone knows me that is really not so surprising that I could find time to plan my wedding in 1-1/2 months as well as work full time while caring for my little girl and flying all over the country to do so…I am a very laid back go with the flow kind of person and this is probably not taking my mother by surprise one bit LOL!
Anyways as always I want to thank everyone for their continued prayers and support as we continue on this journey. Each person I meet and each person that tells me they are praying for Bailey gives me more happiness than anyone could hope for. It truly blesses me to know that so many people are pulling for my little girl to conquer this battle. You guys are the best! I’ll post pictures soon Did I mention that Bailey is CLEAR !!!!!!!!!!