September 27, 2013… One day at a time

So it seems that I have been slacking in the blogging department!!! Thankfully no news is good news :) Bailey has been doing really good! Since my last post she has been able to go on her Make-A-Wish trip to meet Katy Perry in Atlanta …and that was a blast! Cody, Bailey and myself went to meet her and let me just tell you it was so worth the 3.5 year wait! Ever since Bailey was diagnosed her only wish was to meet Katy Perry. Despite several setbacks her wish always remained the same…”Mom I want to meet Katy Perry”. Well it finally happened and it was so much more than we ever thought it would be. Not only did we enjoy meeting Katy Perry and her manager but we also got to do a lot of fun things in Atlanta. We went to the Coca Cola factory, the aquarium, Stone Park Mountain and many other things. It was a get away we will never forget. Now she is saying if she ever gets another wish she wants to meet the people from her favorite show ”Duck Dynasty” lol!!! She seems to have a bucket list of celebrities to meet and she is checking them off one by one…Taylor Swift, check….Katy Perry, check…..Duck Dynasty….well you get the picture!

Once we returned from Atlanta it was time for Bailey to start another round of chemo. This time she also received radiation to her right shoulder so that stubborn “spot” could get blasted away and quit growing as it showed on her last scans. Thankfully chemo went great (first time having chemo since she has stopped her seizure medicine) and she received radiation twice a day as well and that was also uneventful. We are so thankful that she had no issues with seizures as this just proves that the Nifurtimox trial drug was the culprit of her horrible seizure experiences. We are so thankful those days are behind us (although I am not sure I will ever forget)!

So here we are today. Bailey is still recovering from her last round of chemo/radiation…slowly but surely. Her bone marrow is struggling to produce platelets and red blood cells so she is having to get transfusions quite frequently but overall we cannot complain (as we know things could be a lot worse). She has also been really tired although it is a known side effect from radiation so nothing that is unexpected. Next week she will have scans at Ochsner’s to determine where we are with all those “spots” and we are praying like crazy that we have nothing but clear results. Our hope is that her scans will show the chemo is still working to resolve all the remaining spots and she will be able to continue getting this chemo treatment for one to two more rounds. Her awesome oncologist, Dr. Vasquez, has been working so diligently to find a trial that she would qualify for and I am happy to report he thinks he may have found one. Of course it will not be easy to get her on this trial and there are a lot of factors that come into play but we are taking it one day at a time and trying to figure out the logistics of it all.

One of the big issues we are up against is that this trial may be closing soon…as in before Bailey would be able to get to Chicago to begin the trial. Some may be thinking well just get her to Chicago already and let her start but unfortunately it isn’t that easy. For starters her marrow is too weak which means we have to allow her body to recover and get her counts up so she isn’t transfusion dependent (blood and platelets). In order to do this we may have to give her one of the two stem cell bags she has left (which is very scary because we only have two left and there is no way to get more stem cells anytime soon, as the stem cells she receives must come from her own body and not from a donor and she will require the second bag post trial treatment which leaves us with zero stem cell bags in reserve…very very scary). Secondly, in order for her body to recover properly she would need to be completely off of chemo for awhile, as in 4-6 weeks and that isn’t very realistic when there are “spots” still present in her body (which is why we need clear scans). If we decide to stop treatment now to let her body recover, we are taking a HUGE risk that these spots can start to grow again or new spots could potentially start to grow, as we all know this is a very aggressive and relentless disease. Thirdly, she will be required to stay in Chicago for 2-3 weeks while she receives treatment but before that can happen we will have to go to Chicago a couple of times and do the required “work up” in order to get her file going and start the enrolling process. Lastly, little Ellie is due to arrive in about 7 weeks which means we have to also take that into consideration, so I can make the trip to Chicago as well. All that being said we need some prayers that everything will fall into place! It will not be easy to get her on this trial and it will take a lot of preparing but IT IS NOT IMPOSSIBLE!!! It can and will be done if this is in God’s plan…I have no doubt HE will make a way…after all HE led her oncologist to this trial so we will trust in HIS plan and patiently wait to see it unfold.  My little girl is still here after 3.5 years and fighting with everything in her being and that is nothing short of a miracle in itself. We are so blessed to have come so far and this fight is far from over. We believe in miracles and we believe in the power of prayer which is why we always say NOTHING IS IMPOSSIBLE…because there is no doubt in my mind my little girl can and will overcome this. So please continue praying…pray specifically for her counts to rise on their own so maybe we won’t have to use her precious stem cells, pray for her immune count to stay strong so she doesn’t catch anything that would set her back from starting treatment, pray for clear scan results, pray that all the pieces fall into place if it is God’s will for her to be on this trial, pray for guidance for her doctors, pray for guidance for me to know exactly what to do when it is time to make important decisions,  pray that her spirit remains as positive as it always is, pray for healing…pray her miracle has come to pass and she is completely healed once and for all! NOTHING IS IMPOSSIBLE :)

***So in other news, the Bucks For Bailey benefit my company, Maritime International,  is holding for her on Saturday, October 26, 2013 from 10am – 7pm at Sugar Mill Pond in Youngsville, is off to a great start. We are sooooo very excited and are already overwhelmed by the support everyone is showing! There are so many corporate sponsors and so many donations already received…it is amazing to say the least! In case you haven’t heard there are some pretty fantastic bands that will be playing the day of the event including: Cory Landry, Wayne Toups and Geno Delafose!!!! We are looking forward to spending the day with everyone and cannot wait to see what a great success this benefit will be. We will also have arts and crafts, live and silent auctions, fun jumps, face painting, sweet booths, hamburger sales, gumbo cook off and so much more!!! We are still accepting donations for live/silent auction items as well as for our arts and crafts booths! So if you are interested in helping out with any of these things please call 337-321-4240 for more information. We are also still accepting entries to participate in the gumbo cook off…entry fees for individual teams is $60 and can consist of four members per team. If you need more information on that please call the above number as well and we will be happy to get that information to you! Thanks again to everyone who has helped to make this event successful thus far!!! We appreciate you all more than you will ever know!!!

Luke 1:37 – “For with God nothing will be impossible”

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