So here we are again in New York. Unfortunately I am exhausted and we have so much going on that I will have to keep this short and sweet. As many of you know we came back at the beginning of January to repeat scans and unfortunately the results were not what we were hoping for. The spot that we were praying would be blasted by the chemo was still there. After many discussions with Bailey’s doctors it was decided that Bailey would need another surgery, more chemo and more radiation. The hope is that this plan will get her to where we need her to be in order to start the humanized 3f8 antibody. Unfortunately we found out this news on Wednesday, January 18th and surgery was scheduled for January 25th…needless to say that did not leave much time to prepare. Of course Bailey was needing some time at home since our two weeks during Christmas was anything but fun for her. With that being said, she asked me to take her home for the few days before her surgery and that is exactly what I did. I know that probably sounds absurd to fly home for only 4 days, but when your 9 year old who has been through hell and back these past two years asks for time at home before having to face another rough spot in this awful journey, you will do what any parent in our situation would do…you find the fastest flight out of here and bring her home to have the best 4 days of her life!
Needless to say we did have the best 4 days ever! It was absolutely a perfect weekend at home and we spent every minute with our three kids and did everything they wanted to do. We had friends over for a cook out, spent time with our awesome family, went to Chuck E Cheese and went to eat hibatchi and Shintos! As if our time together wasn’t perfect enough, on our night out at Shinto’s we were blessed, yet again, with someone picking up our entire tab anonomously! Let me just tell you that this was not a small price to pay as we had 7 of us total! I cannot tell you how surprised and blessed we were. This is not the first time something like this has happened and each and every time we are blessed beyond words. So to whoever blessed us…thank you thank you thank you! You will never know how awesome this was for us. Anyone who knows the price of airfare to and from New York at least once a month would understand how blessed we felt! Not only is this disease horrible but it is a VERY expensive disease! Thanks to our awesome friend Michelle that works for JetBlue that burden has been lifted several times due to her awesome selflessness and I cannot say thank you enough for that as well!!! It is the generosity of people like this that help us with the burdens of this journey! Everyone from parents and students at RCE, Mrs. Habetzs, Mrs. Lavergne, Mrs. Jennings, Mrs. Privat, Erika Leonards, Danette and Brittany Arabie….and everyone else, you all know who you are… I cannot say thank you enough…if I named everyone I would need at least 10 pages because that is how blessed we are!
So here we are back in New York. We met with the surgeon today as well as the radiation oncologist. I will say that the meeting was definitely not what we were expecting. Unfortunately we were told that there are more spots in her chest that show on the final scan reports. We were also informed that her 9th rib is showing uptake and they are afraid it is in the bone marrow so they feel that removing the entire rib would be the best option. Of course this is not at all what we were prepared for so this news definitely caught us off guard. On a positive note, the radiation oncologist said that she feels that we should possibly give her body more time for the radiation to work before removing the rib. So the plan was that Bailey’s situation would be discussed again at the tumor board meeting this afternoon and they would let me know for sure tomorrow what was decided. I am praying that somehow it was decided to give a little more time for her body to let the radiation work as removing the rib could present problems for her later on down the road and the good Lord knows she has enough to deal with as it is.
Surgery will begin at 10:15 am tomorrow NY time (so 9:15am for everyone back home). Please join us in prayer tonight and tomorrow. Pray that this will be the last surgery that my little girl has to face. Pray that the surgeon will have the guidance from God and everything will go smoothly. Pray that her recovery is quick and with minimal pain for her. Pray that we can start chemo and radiation right away so we can get back home and get on the anitbody treatment. Pray that this stupid freaking cancer leaves my baby alone!!!!
I will keep you all updated as soon as I can….my apologies for not posting more or sooner for that matter….I know you all want to know how she is doing and I thank you all for staying and praying with us on this journey. Although we do not understand why she was chosen to carry this cross in life, I know that God will use this for His good! I know that God will hold my little girl in the palm of His hand…I know He loves her evern more than I do…and believe me that is alot!!!! I will not sit here and tell you I am not scared to death because I am…I am human and I am her momma! But believe me when I say my worries are in no way as big as my faith! I have faith that my little girl will be healed! She is a child of God and she has a purpose! Nothing is Impossible and Prayers bring Miracles Everyday!!!! Pray this is the day for her miracle!