January 24, 2012…Our faith is bigger than this and prayer brings miracles!

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!

January 5, 2012…. Simply laugh and make a mowhawk :)

Well the new year is here and so much has happened since my last post…I am not even sure where to begin. We were finally able to come home on Dec.18th after a very scary experience. We were all set to leave on Saturday the 17th but as we were packing our things, Bailey began needing to urinate very frequently, which at first was not unusual due to the UTI’s she gets almost regularly now, but as it went on there was very large amounts of blood in her urine. Of course I freaked out and called her every so awesome oncologist from Tulane, Dr. Kanter, to see what I needed to do. She then explained that because of the chemo regimen Bailey had just gotten, her bladder was bleeding and I needed to get her to the ER immediately. So off we went…I actually ran like I was running for my life while pushing Bailey in her wheelchair down York Avenue to get my little girl to the hospital. Thankfully there are people of all kinds in New York and no one looked at me too strangely, although I doubt I would have noticed since my adrenaline had kicked in and I ran 5 blocks to the hopsital in less than 5 minutes…believe me when I tell you this is a record!!! Anyways upon getting to the ER we were told that her bladder was in fact bleeding and we would not be able to catch our flight that was leaving at 2:50pm…so needless to say we were extremely devastated as this meant we would miss Christmas with my mother-in-law’s family and we were really looking forward to spending time with them. Definitely an amazing extended family that I hold dear to my heart… thankfully they were understanding even though this was the second year in a row that we were unable to attend due to circumstances outside of our control from this stupid cancer. So as we sat in the ER the doctor told us that the only way to stop the bladder from bleeding was to hydrate Bailey and we would know in 24 hours if it worked or not…so they hooked her up to fluids and gave her antibiotics and sent us back to the Ronald McDonald house for the waiting game. Thankfully everything worked out (as it always does thanks to the power of prayer) and we were able to fly home on Sunday.

Now let the fun begin is what you are probably thinking….but that is not exactly what our stay at home had in store for us because nothing in life comes that easy lol! Needless to say this chemo regimen of cytoxan and temodar was not as easy on poor little Bailey as we were told it would be. Counts bottomed out, eating and drinking lessened and of course momma was in her ear the whole time telling her that she must drink in order to keep her bladder from bleeding again…so not fun at all! Also with counts bottoming we had to drive to Tulane every other day for transfusions and on the days we did not drive we were doing bloodwork at Women’s and Children’s to check counts…chaos chaos chaos. Oh and I forgot to mention that since we had been in New York since November 30th, I did not have one single present bought for Christmas. I tried sending my poor husband but it was soon mutually agreed that he was not the man for that job lol!!! He already has high blood pressure and that shopping stress was not helping that situation whatsoever! Once again things worked out and I was able to get all my shopping done two days before Christmas thanks to Aunt Stef!!! As Bailey says “She is not my real Aunt but I just call her that!”…anyways Aunt Stef was a God-send as always and helped me get everything done :)

Our Christmas holidays were very rushed due to our trip to Tulane on Christmas Eve morning for transfusions, but we enjoyed the time with our family all the same! Big shout out to our awesome nurses at Tulane for getting us in and out of there as quickly as possible…you guys ROCK! Cody and I felt so very blessed that we were all home together enjoying our kiddos and watching their faces as they had a Santa scavenger hunt which completely took them by surprise…but as I tell them, Santa is always watching and like to keep us on our toes and mommie and daddy too:)

So after the hustle and bustle of Christmas we were still making trips to Tulane for transfusions. Unfortunately transfusions and low counts were only the beginning … Bailey developed a stye on her eye that had to be lanced which was a very unpleasant experience for all of us. Not only was this stye the biggest thing I had ever seen in my life but it also tested positive for MRSA which is a type of staph infection that people who are in hospitals as much as she is are proned to get. So with all that being said, we have been home since December 30th and I have been doing IV antibitoics at home. I hook her up to the IV vancomycin every 8 hours and it runs for 2 hours then I unhook her. Thinking that possibly I missed my calling in life and should have been a nurse because I am getting pretty good at all this stuff…(totally joking)!

So here we are still recooperating from our two weeks at home and it is time for us to leave again. We are flying out on Sunday, Jan.8th and heading back to New York. Bailey will have scans done on Tuesday and Wednesday then we get the plan. Please pray that these scans will be clear. I know my daughter is covered by the blood of Jesus and his stripes will heal her – there is no doubt in my mind that she will NOT not lose this fight and she will be a normal healthy little girl again…in HIS timing this will happen!

I want to share a funny story that happened just last night…made me so proud of my little girl! She makes me proud everyday but I always love the subtle reminders that somewhere along the way I did something right! Anyways, as we, meaning Cody, Bailey and I were laying down watching a movie she says here mom. As I open my hand she puts a ball of hair in my hand. I said “Bailey why did you pull your hair out?”, she said “I didn’t pull it out, it is just falling and it itches”, so I asked her if she wanted me to shave it again and of course she said yes. So as we are in the bathroom getting ready to shave her hair for the third time in less than 2 years, she looks at me with the silliest little grin and says “Hey mom let’s make a mowhawk” so of course I gave her exactly what she wanted. We took pictures, which she will not let me post, but let’s just say she could so rock the cutest little mowhawk you ever did see!!! I still find it simply amazing that my 9 year old can still find reasons to laugh despite the horrible hand that she has been dealt in life.

She is my constant reminder to let go of the small stuff and live each day as if it were the last!!!! Don’t forget to pray :)