December 18, 2012….Simply GRACE!

Philippians 4:6 ….”Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your request be made known to God…”

So we are back from Michigan and while we were there scans were repeated and results are in……(insert drum roll here)….my little girl only has 1 tiny spot!!!!!! Yes I said 1 little, tiny spot near her liver…all the other spots are gone…vanished… as if they never existed!!! What a miracle she is…to say we are overjoyed is an understatement! After almost 5 long months of several trips a week to the hospital, transfusions 3-4 times weekly, losing her hair for the 4th time, low counts, lots of resting in bed, flying all over this country, etc etc we have tremendous improvement. When Dr. Sholler showed me the scans I literally wanted to scream at the top of my lungs “SCREW YOU CANCER,PRAYER WORKS”! My little girl will beat this horrible disease and she will live a long and healthy life with an awesome testimony of what the power of prayer can do! She is meant for great things that will come to pass!

Now on to the other good news! We went up to Michigan to not only have scans done but to also meet the new team of doctors that have very promising trials in neuroblastoma. Let’s just say our trip was so much more than I could have ever hoped for. The facility is beautiful and the people are just down right hospitable. It was so good to see how much this team of doctors/nurses really care about these kids and are doing everything in their power to not only cure them but keep them at home while doing so. The reality is that we are going on three years of fighting this disease and we have been home only about 1/3 of that time. During our almost three years we have gone to four different hospitals in four different states. We need to be home! Don’t get me wrong I will do anything and go anywhere to keep my little girl here with me but at the same time I long for our home life back because I know that is what she needs…and quite frankly that is what life is about. She is a 10 year old little girl that has been given a very difficult hand in life and I know how important it is for her to be around family and friends while she battles on day in and day out. Our support system at home is what keeps us going. Being surrounded by so many caring people who are standing in prayer for us everyday is nothing short of amazing and uplifting. It really does help us continue to fight.

So the plan we were given is simply wonderful and almost to good to be true! It was decided that instead of surgery to try and remove the tiny spot that remains near her liver, she would have a chemo regiment that she has not seen before, so hopefully her body will respond quickly and the spot will diminish. The chemo regiment would be 5days of cyclophosphamide and topotecan with Nifurtimox given daily. We would repeat that cycle every 21 days and rescan her after two cycles to see if she clears. Once she clears she would stop the chemo regiment and get on DFMO (the trial that I have been praying for her to start).For now, because Bailey’s counts are still low, she is unable to start the chemo (Nifurtimox regiment) so Dr. Sholler agreed to do a compassionate use of DFMO. Normally you would need to be NED (No Evidence of Disease) but since Bailey is so close to being clear and since she has relapsed agressively in the past while we were doing no therapy waiting for her counts to recover, Dr. Sholler agreed with me that we needed to do something while we play the waiting game….so DFMO it is! This medicine is seriously too good to be true…I kept waiting for the catch but thankfully there was no catch. The DFMO consist of Bay taking three pills in the am and three pills in the pm and that is it!!! There are no side effects, no low counts, no nausea, no hair loss…nothing but swallowing those little tablets twice a day.

So with all that being said, our stay in Michigan was only 5 days!!!! Can you believe we did scans, met with doctors, got results (that made this momma want to scream like I just won the lottery although I contained myself for the sake of looking like a crazy person and to save Bay from the embarrassment of explaining to people why her momma was screaming her head off in a public place surrounded by new faces that we will have to see at least once every three months lol) got a plan, started new medicine and were back at home in 5 days. So anyone that tells me they don’t believe in answered prayers well I will tell you that you are delusional and obviously aren’t praying enough or patient enough to watch those prayers get answered. We are almost three years into life with cancer and finally my prayers are being answered…although I always knew it was a matter of when NOT if! Ok back to the plan…so right now we are home allowing Bailey’s counts to finish recovering and she has been taking the DFMO everyday. We will check her counts again the day after Christmas to see if the doctors feel that she is ready to start chemo. If they do not feel she is ready we will stay home until the later part of January…if they do feel she is ready we will head back to Michigan the first week of January to repeat scans and start chemo the week after, then back home to recover (the best part…HOME). 

Now onto the part where you can all help…we need more prayers! There is a slight chance that the DFMO she is on now might just clear up that tiny spot and we can bypass the chemo stuff and just stay on the DFMO. Of course this is what we are praying will happen…so please please please believe with me that the little spot will be gone and my little girl can continue on this new medication that has no interference with her daily routines. Pray that after three years our prayers are really being answered and she is being cured from this dreaded disease once and for all. Pray that this is our miracle! We know we have made it this far by the power of prayer and God’s amazing GRACE!

Please also keep all of our dear friends (Cale, Ashtyn, Tristin, Nathan, Henley, Tripp, Morgan, Kassidy…just to name a few) that are fighting this horrible beast in your prayers…so many of them did not get the news they were hoping for and that is just devastating at any time of the year but especially Christmas. We firmly believe in the power of prayer and we know ……Nothing is Impossible!!!!!

My little Christmas Miracle