To say we have had a wonderful past couple of weeks is an understatement. As you know Bailey was due to be back in New York for scans the week of April 9th. So we headed up to New York on Monday, April 9th after celebrating a wonderful Easter with our family. I must say that being home this year was incredible. Since cancer came along we have missed so many holidays, so when we are able to be at home celebrating with our family on the actual holiday and not a make up holiday after the fact, we cherish every single moment. We had entirely too much food and way too much fun to say the least. After our Easter lunch we all sat outside under the shade of the trees and watched the kids throw water balloons at each other, squirt each other with water guns and let’s not forget the silly string. Cody was a little worried on the Saturday before Easter when I drug him to the store with me to buy every single can of silly string that was on the shelf and 500 water balloons! Thankfully my husband knows me well enough to know that I am still a kid at heart and so is he! My motto is “If you are going to do it, do it big” and that we did!
So there we were in New York on Monday knowing what the next three days of our trip consisted of…lots of scans in which Bailey has to lie completely still, drink horrible contrast (although she LOVES the CT contrast that she gets to mix with Sprite and always begs me to ask them for more lol), go almost all day without eating or drinking, being put under anesthesia, pokes, prods, etc….this is also always a very stressful time because of the anticipation of the results that are to come once scans are finished. This time was no different than any other. It always feels like a waiting game to me…the three days in which all those scans are crammed seem to drag on and on and on. So scans started on Tuesday and finished up on Thursday. I received a call from Dr. Basu’s office telling me to come in to the office on Friday to discuss the results…and there were those knots in my stomach again. As much faith and trust that I have knowing God will heal my little girl, I still can’t help that sick feeling I get every single time…part of being a mommie I think and no matter what, that feeling will never go away. On Friday we went into the office and got some of the BEST news ever!!! Bailey’s scans are once again CLEAR…she is officially NED again——- NO EVIDENCE OF DISEASE!!!
So for the unexpected maybe not-so good news although I am not sure at this point…her ALC count that we have been waiting for to come up in order to start the humanized trial was still hanging out at .2 when it needs to be at least .5 …UGGGHHH! After discussions with Dr. Basu it was decided that we were coming home and would try to get her on the trial again in June. Yes I said JUNE!!!! So on one hand we are beyond excited to have so much time at home considering the majority of this past year has been spent in New York, but on the other hand being home for so long with no treatments is very scary. This will be the longest time that Bailey has had no treatment and given the fact that she has relapsed twice while on treatment you might see how scary this really is. I did express my concerns to Dr. Basu and she agreed that this was a really long time for Bay to go with nothing.
So the plan as of now is to possibly do another round of low dose chemo, irinotecan, next week and then wait until June 4th or possibly find another trial that she can start sooner which I have been looking into but am having no luck. Apparently once you are NED, you do not qualify for alot of the trials. This is so overwhelming to know how hard my little girl fought to get to NED only to find out that once she is there very few treatments are out to help keep her that way. I will say that I was very heartbroken…don’t get me wrong, the news of NED made me extremely happy but to know that this could be taken away from her at a much higher rate now that there are no other treatments available is just down right heartbreaking. I am her mommie and I always feel the need to “fix” this…to find a way or a treatment that will cure her. I know in my heart of hearts that I cannot fix this and I cannot heal her…but I know who can!!!
So that is why I am asking you to join me in putting your faith along with mine in the fact, that maybe, just maybe the reason for ALL of these doors being closed is because GOD has already done what HE has promised to do…HE has healed her. HE has taken away her illness and healed my little girl. Maybe this is her miracle that we have all been praying for all along…I have always had faith that this day would come so why now am I having a hard time accepting what is. Maybe it’s human nature or maybe it is the devil trying to put doubt in my heart and mind but I will not allow it. I choose to be happy in each and every day we are given and I chose to be thankful for this miracle. I have claimed healing on her since day 1 and I have all the faith in the world that she will live a long, healthy, cancer-free life. She will get to walk again despite what statistics told us, she will have long hair once again despite her losing it several times, she will run and chase her brothers in the house, not in her wheelchair but by using her two little strong legs because GOD is that able! She is only a little girl but she has such big faith…there is no doubt in her mind that everything will be ok and I am standing firm on my faith that she is right…everything will be ok once again and we will get back to the normal routines of the life we had before we knew the harsh reality of what cancer can do….and we will walk away knowing we are better because of our experience…we will laugh ALOT, we will say I LOVE YOU everday several times a day, we will take the time to do things all together as a family because we know what it is like to be apart for long periods of time, we will NEVER take a single moment for granted and mostly we will grow in our faith because of what HE has brought us through.
As always thank you for your prayers and support. We couldn’t walk this journey alone! NOTHING IS IMPOSSIBLE!!!