April 2, 2014 …. Enjoying the little things

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Just wanted to write a quick post to let everyone know how we are doing. Thankfully Bailey has not had little side effects from chemo and we have been able to enjoy our time at home. Her counts are taking longer to recover but that is to be expected. She is still going for transfusions of blood and platelets every 3-4 days, but other than that we cannot complain. She is due to have another round of chemo next week but due to the fact that her immune system is still not recovered, chemo will probably be postponed for 1-2 weeks. We are ok with that as she could really use the extra time.

Last weekend we took the kids on an extended weekend trip to the beach to visit Granny Carla and Papa Jimmy (Cody’s mom and step-dad). We were so excited to be able to get away for a few days and just relax! The kids were super excited as they always spoiled when we go visit! We were able to spend lots of family quality time together doing nothing but having fun! Just what we needed!

Anyways, that is all I have for today…other than a few pictures of our kiddos! Enjoy!

Keep the prayers coming…NOTHING IS IMPOSSIBLE ūüôā

 

March 18, 2014…. Only takes a mustard seed

Has it really been 4 months since I last posted on here….geez! Guess you can tell little Ellie arrived and our lives have been non-stop since then. We have had so much happen in the past 4 months I am not even sure how or where to begin to fill you all in. I guess I will start with our precious Ellie Elizabeth…our sweet girl made her debut into this world on 11-12-13…what a cool birthday right?!? I went in on 11-11-13 to be induced but it seemed that I was already in labor and just didn’t realize it! So needless to say no induction was necessary and little Ellie made her appearance at 9:45am on 11-12-13 weighing 9lb 3ozs (OUCH!!!!) and was 20-1/4″ long! It was love at first sight!!! Seriously, our little Ellie took our breath away! She was beautiful and perfect in every way. She is such a blessing to our family. She is so loving and is such a good baby! She rarely cries but when she does you know she is hungry, tired or needs a diaper change…other than that we never hear her unless it is the sounds of her belly laughs that bring us all to laughter! Nothing in the world like the sound of a baby laughing! Ellie is so much like Bailey it is really scary. Most times I catch myself calling her Bailey because I am taken back to when Bailey was little…she is the spitting image of Bailey! The kids are enjoying her so much…they love to make her laugh and are very protective of their little sister. Bailey is such a HUGE help with her! She is so helpful when it comes to bathing her, changing her diaper (as long as it is #1 and not #2)¬†or watching her when I need to get things done around the house. Seth and Aidan love her¬†so much and are helpful as well¬†but they are more interested in seeing what they can do to make her laugh and will NEVER volunteer for diaper duty (although I can’t say I blame them lol). We really love her to pieces and cannot imagine our life without her! She completes our family of 6 in more ways than one ūüôā

On to my sweet Bailey…so much has happened since my last post in November. If you remember, she was on the chemo chyclophosphamide/topotecan for 3 days¬†every 4-6 weeks and was handling it very well. So after her cycle in January it was time to do scans again. Well let’s just say scans did not show us what we were hoping they would. Unfortunately the scans showed that Bailey not only progressed but it was pretty aggressive. With this news came some pretty tough discussions and even tougher decisions that needed to be made. While we were very forunate to have been able to keep her on that chemo regiment for almost 8 months with some improvement and stable scans, our time with that was up…we now had to decide what to do from here if anything. Her oncologist suggested to me that perhaps we needed to start thinking of ways to slow down the progression and enjoy what time we had left….yes I did say “what time we have left”. Let’s just say that discussion did not go over well with this momma bear. As I am on the phone with him, I am having somewhat of an outer body experience with myself as I cannot believe we are acutally discussing options to only prolong her life for a few more months instead of options that are aggressive to get rid of this cancer crap once and for all…needless to say I broke down. He mostly talked and I mostly cried. No parent should ever have to hear those words “enjoy what time you have left with her.” After what seemed like an eternity of me pleading my case as to why this will not work for us and why she needs to continue fighting with aggressive treatments, we hung up and I just sat there and thought to myself…this is not the end…no one will tell me when it is time to throw in the towel! My little girl is far from done fighting this nasty freaking disease and we will not give up no matter who or what anyone says…we have been here before and we did not give up. God always provided and we will trust him to do the same. Well a few hours later my phone rings and it is her oncologist again telling me that he will do whatever I want to do for her…if she wants to keep fighting he will help us do just that…(once again God works on our behalf)! So as the next few days went by I became a research rat to say the least…I spent every spare moment I had researching every open and upcoming trail for neuroblastoma. Thankfully we found a few that she might be eligible for and we are working on getting the necessary paperwork, etc to get the ball rolling.

In the meantime I called our old oncologist, Dr. Kanter, who moved to South Carolina at the end of last year. I guess you could say I needed someone who knows Bay and who knows me to tell me I wasn’t crazy…I needed to hear that what I wanted for my little girl was not unreasonable and wasn’t impossible…I needed someone to give me hope! I needed someone to say, yes it could work…things can turn around for her because we don’t know what the future holds…we don’t know when her miracle might unfold so until then we do need to keep trying! Thankfully God knew I needed to hear that and HE answered my prayers…after talking with Dr.Kanter, who took care of my sweet girl for 3-1/2 years, she agreed that we need to keep fighting…she said “Brooke she isn’t finished fighting, I don’t believe this is the end for her!” We discussed possible options that might work to help get the progression under control for now until we could get her on a trial that might possibly help to clear her again. We decided that Bailey would go up to South Carolina to meet with Dr. Kraveka, a neuroblastoma specialist, that heads alot of Dr. Sholler’s trials.

Upon arriving in South Carolina I had such a peace! After seeing Dr. Kanter again and meeting with Dr. Kraveka, I knew God sent us there for a reason…HE wanted to show us that we need to keep pushing forward because HE is not done with Bailey’s story yet! Originally when we planned our trip to South Carolina, we planned on being there for about 10-14 days…well after the CT and Bone Scan results came in, those plans changed! Dr. Kraveka called me on the Saturday to discuss what the results of her bone scans showed and we were all pretty speechless!!! According to the results, Bailey’s bone scans was negative! NEGATIVE for bony disease!!!! How can this be???? Only four weeks before the scans showed bony disease in so many places all over her little body and now NOTHING!!!! Dr. Kraveka explained that even though the bone scans showed negative there may still be bony disease but that it is too small for the scan to detect which is why it showed up on her MIBG scan four weeks before…I on the other hand believe GOD is performing a miracle before our eyes! I know HE is working on her behalf and will give total healing to Bailey…until then it is our job to trust HIM and wait patiently for HIS plan to unfold! With that news, it was decided that Bailey could not do the targeted therapy we went to South Carolina for. We discussed doing a different chemo regiment, irinotecan/temodar with zometa, to see if this would stop progression and hopefully clear her…so back home we went…but with happiness and HOPE!

Bailey¬†just completed¬†5 days of the new chemo regiment and we will rescan after one more round. She is doing ok and feeling pretty good despite some expected side effects. Honestly we can handle side effects, we can handle some not so good days…what we cannot handle is giving up! We are full of faith…always have been always will be no matter what! So until the scans show what we already know will come to pass we will continue on…trusting in God every step of the way!!! We know NOTHING IS IMPOSSIBLE and we will continue to live our life by this motto every single day! We choose to believe in her healing and we choose to believe she will have a long healthy life!

Luke 17:6 “If you have faith as small as a mustard seed…”

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November 11, 2013….So extremely BLESSED

I have been meaning to update for quite some time now, as we have had alot of exciting things happening, but honestly I have been a little pressed for time with so much going on. As you know Saturday, October 26th, was the big day…Maritime International’s 1st Annual Benefit¬†honoring Bucks for Bailey! AMAZING is all I can say. If you didn’t make it out to the benefit you surely missed out. There was non-stop fun all day long! With over 2,000 people in attendance, music by Cory Landry, Wayne Toups and Geno Delafosse, 27 gumbo cook off teams, 30 Live Auction items, over 50 Silent Auction Items, Raffles, Prizes, Face Painting, Fun Jumps, etc etc…we had a blast!!! Another highlight of the day was an awesome couple, Kevin and Bridget Clause,¬†(that we have become friends with over the years)¬†decided to surprise Bailey with¬†her very own electric scooter! These are the same people that helped me over the summer to get Bailey a scooter during our camping trip. ¬†Let me tell you this isn’t just any scooter…it is PINK and was designed especially for my little girl (see pictures at the end of this post). Her name is plastered on the scooter as well as our favorite saying “Nothing Is Impossible”…it is absolutely perfect! Bailey was so surprised and so moved by their generosity, it took her a few minutes to stop crying and get on her new ride. Let’s just say it didn’t take her long to put her new ride to use…before long she was covering every square inch of Sugar Mill Pond and there was no tracking her down!

On another note, Maritime International’s benefit was not only a fun day for all but was also successful in¬†raising over $135,000 to put in Bailey’s Trust Fund account. To say we are overwhelmed with the generosity of so many people…some we know and some we have never even met….would be the understatement of the century! We are completely blown away that so many people still follow her journey after almost 4 years and new people are continuing to join her journey every single day. I am so blessed to work for such a generous company that has supported our journey from Day 1. We have met so many families that lose their jobs or struggle to make ends meet because of the strain this ugly disease puts on¬†parents due to time spent in the hospital and time away from work. I am so very fortunate to say that losing my job was never a concern.¬†Maritime International¬†has made every effort to make sure Bailey was taken care of first and foremost, and that I¬†was equipped to¬†continue working from wherever we were so I could continue providing her with the care she needed….and now this! ¬†We are definitely prepared to take on whatever plan God has waiting for us. Traveling across the country in search of a cure is one thing, but having to worry about how to pay for these travels is another…thanks to Maritime and everyone who played a part in making the benefit so successful, I no longer have to worry about the monetary part of things for awhile. I am so grateful that I will be able to concentrate on what is really important and that is getting my little girl healed once in for all! So once again thank you thank you thank you to everyone that helped make this happen and especially to Maritime International!!!

On another note, Bailey is feeling great!!! She has been atttending school regularly and enjoying our time at home. We are still having to make trips to the hospital about 3 times a week for blood work and/or transfusions but we are not complaining! On Monday, November 4th we celebrated Bailey’s 11th birthday!!!! Eleven…seriously where does the time go!!! Everyday I am in awe of my little girl, but on her birthday I am even more so reminded that many told us we may never watch her turn 8 years old, much less 11…how is that for the power of prayers and miracles! On the Sunday before her birthday we spent a fabulous lunch at Cheddar’s with our family and she was beyond blessed with lots of gifts and money (which she counts daily and has lots of plans on how it will be used lol!)…she is definitely one loved little girl! On Monday, her actual birthday, I took off of work and took her, along with four of her friends, and Mimi of course, to eat at her favorite hibtachi place and then to the mall! Let’s just say that was quite the adventure. Those 5 girls made us laugh non-stop all day!!! It was so great to watch Bailey just be a kid…she was the birthday girl and those 4 little girls made sure she had a great day! At one point during the day she looked at me and said “Momma I am having so much fun…this is the best day ever”…Let’s just say I had to hold back the tears! Don’t get me wrong, we have alot of great days and they far outweigh the bad days…but not often do we get “normal days”…days where she is just another kid hanging out with her friends at the mall eating dippin dots ice cream, buying jewelry at Clare’s and going fill up bags of candy at the candy store…those are the days we miss. We forget what normal is and how it feels…so I was very grateful for that small reminder and once again reminded how blessed we are to get more days as I know so many who will never get that ever again…and that breaks my heart into a million pieces as much as it fills my heart with gladness that we are still experiencing Heaven on Earth with her.

And in other news…Ellie will definitely be making her debut soon! As a matter of fact I am going into the hospital tonight to begin inducing. This sweet little girl is obviously very comfy in my belly and doesn’t seem to be in a hurry to come out anytime soon. Unfortunately Bailey has chemo scheduled again in two weeks so we need to hurry Ellie along so we can all be ready to travel with Bailey for her treatment. We are all so very excited to meet this sweet baby girl that has already brought our family so much happiness. So stay tuned and I promise to post pictures soon of our sweet Ellie.

As always thank you all for the prayers, support and encouragement you continue to bestow on our family. You will never know how much it means to me to have so many people praying for us and keeping up with our journey. My heart is so full and we are so very blessed! God is sooo very good to us and makes sure all of our needs are met…we are very thankful¬†and grateful for all these blessings, big and small. NOTHING IS IMPOSSIBLE ūüôā

Mark 11:23 “For assuredly, I say to you, whoever says to this moutain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says.”

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October 21, 2013… So much to say

Well it has been almost a month since my last post and¬†geez do I have a lot to share so here it goes. For the news so many are waiting to hear…¬†Scans were done at Ochsner’s and the results were good! Results show chemo is still working to decrease the remaining spots in her bones and no new spots have formed – THANK YOU GOD!!!! Bone marrow results are clear which means that her bone marrow is not producing yucky cancer cells which is also a very good thing! Basically the low dose chemo is going well and doing exactly what the doctors were hoping it would do. We are beyond thankful for this blessing!

Bailey did receive another round of chemo the week after scans and she rocked! The three days of chemo flew by and we didn’t have any issues…again so very blessed! Her counts are still extremely low and her marrow is taking a really long time to recover from all the treatments…with that being said she is having to get frequent transfusions.We know her little body has been through so much over the past 3.5 years which is why we are sort of at a crossroads right now. She currently has 2 bags of precious stem cells left and she could desparately use a boost so to speak. The problem is that until we find a trial she could be eligible for, we hate to use the stem cells just in case they are needed in order to qualify her for the trial (meaning get her counts up high enough so she is eligible to participate in the trial as many trials have strict requirements of what your platelet, blood and ANC count must be) . If we decide to give them now and she continues to receive more chemo (which she needs to keep things stable or improve) then we are taking a chance that her marrow will boost up but eventually become weak again due to chemo depending on how long it takes to get her on a trial…but her marrow is weak and she is requiring transfusions every 2-3 days…so we need to do something. We also found out that the trial in Chicago will not work out for Bailey at this time. The seizures she experienced while on the last trial exclude her from qualifying so we are back at square one for now. Her wonderful oncologist is still researching a few other trials but we don’t have any definite plans for now. Our plan is to take things one day at a time and to continue enjoying every moment. Bailey feels great despite her low counts and we have had really good quality time at home since chemo so we have absolutely nothing to complain about. I know the right doors will be opened in God’s timing and until then we will patiently trust in HIM.

***I hope everyone is getting just as excited as we are about Bailey’s upcoming benefit! There are so many great things planned and so many generous people that have already made this event a huge success. We are looking forward to seeing everyone out at Sugar Mill Pond this Saturday, October 26, 2013 from 10am – 7pm.¬† The weather is supposed to be fantastic and there will be plenty of gumbo cooking so be sure to come out and spend the day with us. We look forward to seeing you all there!***

Bucks for Bailey Small Flyer

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 ūüôā 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 ūüôā

***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”

BucksforBailey_Poster

 

 

August 22, 2013….Benefit and much more

Well I am writing to inform everyone that the company I work for, Maritime International, has decided to put on a benefit for Bailey….and not just¬†a small little benefit…we are talking a HUGE benefit with bands, auctions, food sales, raffles, etc. ¬†I have attached the flyer as well as the corporate sponsor forms for anyone that is interested or knows someone who might be interested in helping out. To say we are blessed would be a huge understatement. It never ceases to amaze me how prayers that we pray always get answered….maybe not when you expect them too, but eventually they do! As everyone knows we are praying that another trial will open up for Bailey and Maritime wants us to be fully prepared when that happens as participating in these trials are very costly…they understand all to well the amount of time we spend traveling for her treatments and want to help cover the cost that are associated with our travels.

Maritime has always been very supportive in our search for Bailey’s cure and has always supported my efforts to get her treatments wherever we needed to in order to get her cancer-free again regardless of how much time those travels would keep me away from the office. They have made every effort to enable me to continue working full-time no matter where I am with Bailey…whether we are at home, in hospitals, in different states, etc….and now this! What an amazing company I have been blessed to work for over the past 7 years! Please feel free to pass along the information to anyone and everyone…the more help we have the more successful this benefit will be. You guys have always supported us as well over the past 3.5 years and I know your support and your prayers is what will carry us through until she is healed once and for all! We firmly believe NOTHING IS IMPOSSIBLE and we will not give up in our search!

Corporate Sponsorship Forms

Bucks for Bailey Fundraiser Flyer

August 20, 2013… Enjoying every minute of every day

Already August 20th…where does time go??? Well our trip to Michigan was very uneventful, thankfully. Scans showed that Bailey’s spots are continuing to decrease and the one spot in her femur is completely gone…so take that freaking cancer! The spot in her right shoulder area did look a little bigger on the scans, so her Michigan oncologist decided that we need to go ahead and blast it away with radiation so it does not continue to grow. We also discussed plans and options and it was decided that Bailey would continue receiving the same chemo (cyclophosphamide/topotecan for three days every 21 days) she was on, while on the trial study, as her body seems to be responding to it in a very good way and we would just pray that the seizures would stay away since she wouldn’t be receiving the trial drug Nifurtimox anymore.

Thankfully when we returned from Michigan it was chemo week (August 5 – 7th) and let’s just say my girl did fabulous! She was able to receive all three days of chemo with no issues, no seizures….ahhhhhh!!!!!! We were even able to go home as planned on day three of chemo right after her infusion was finished. Of course, chemo knocked her counts down and we are having to do a few transfusions of blood and platelets¬†each week to help her body continue to fight but we will not complain about that!!! With that being said, the plan is to continue this chemo for a few more months to see if her body will continue to respond. As long as scans (which will be done after every two cycles) are showing improvement or stable, we will not change anything. Unfortunately Bailey does not qualify for any other trials at this time. Her body has been through alot in 3.5 years and our options are very limited….NOT hopeless just limited! So until something comes along we will continue to take things one week, one day and one scan at a time!

Also in other news, school started and Bailey was able to attend! She was a little nervous about going back to school as she wasn’t able to attend very regularly last year and we had a pretty rough year to say the least…but after meeting her teachers her outlook was changed and she was actually ready to go! After her first day of school, I came home to a smiling, beaming little girl that had somewhat diarrehea of the mouth telling me all about her classes and teachers and most importantly her friends. It feels so good to have some normal in life again! For a moment the reality of what our life is really like went away and we were just a normal family talking about normal, non-cancer related stuff….it was a great feeling! I know that as the year goes on her enthusiasm may diminish, as any typical 10 year old would, but for now we will revel in her delight to be going to school as a 5th grader and cherish each and every moment. ¬†

Well that is pretty much it for now…I will keep you all updated with how the next round of chemo/radiation goes. Until then, please continue to pray that her healing has come and she will not have to endure this cancer battle anymore. Pray for chemo to continue to work, pray for counts to continue to rise and pray for more normal days. Please keep all of our friends who are also in this battle with us…Ashtyn, Tripp, Noah, Tristin, Brooke, Justin, Cierra…just to name a few…and pray for¬†the families of our¬†friends who have recently become angels..Henley and Alyssa…pray that their memories never fade and the comfort of being reunited one day in eternity brings peace. We need a cure so continue to pray…prayers bring miracles and NOTHING IS IMPOSSIBLE!!!!

My sweet girl ūüôā

July 29, 2013…. Back at square one

Let’s just say I hope you have more than a few minutes to read¬†because I have alot of updating to do! Starting with the “oh so sure Bailey’s disease has spread to her brain scare”. Well as you all know the oncologists wanted to do a follow up MRI after the first set of seizure that took place around father’s day. (And yes I said first set because little did we know there were more to follow but I’ll get to that in a minute). So off we went to New Orleans to do scans because the oncologists were very sure that the seizures were due to progression in her brain because of “how off” the MRI results looked after her seizures. Well it was decided that since we were doing an MRI we should just go ahead and do an MIBG scan as well to compare both…well let’s just say I love God’s way of working!!! So my sweet girl underwent the scans and late that afternoon I get a call from Dr. Vasquez (Bailey’s new oncologist at Ochsner’s) and I could tell by the tone in his voice that he was pretty dumbfounded (but in a good way). The conversation started like “Hey Brooke, it’s Bob…sorry to call you so late but I have been waiting on results all day and well….I really don’t know how to put this into words as we have never seen anything like this before so I will just read you the report word for word.” Let’s just say not only did the report show that Bailey had aboslutely NO disease in her brain…but it actually showed that her MRI was clearer than most people that have undergone as much chemo as she has. In his exact words “this is a perfect MRI, one that I would expect to read on you or me who has never had a dose of chemo ever….I am pretty amazed.” Yep that is my girl and that is the power of prayers…AMAZING! So now that we had that out of the way, he received the MIBG reports (scan that¬†detects¬†neuroblastoma)¬†the next day and those results were good news as well. Although there was disease still present, no spots appeared larger and no new spots appeared…so basically we had stable…and stable is great!!!

So off we went to enjoy our annual family¬†camping trip…relieved and in awe of how¬†great¬†God is and how blessed we are! Our week of camping was just what we needed…a week spent with our family…laughing, playing, cooking out,¬†swimming, making smores and most importantly making memories! Bailey felt great and although we had to detour to the hospital a couple of times for blood work and for transfusions, we still made the¬†best of it. She was also blessed with a motorized scooter that was lent to us for the week…definitely made life a little¬†easier¬†on everyone. She was able to get around from here to there without help and it let her regain some of the independence that is lost with being in a wheelchair. The boys enjoyed fishing, riding their bikes all over that campground¬†and playing in the rain! We¬†celebrating their 9th birthday¬†there as well and they were more than blessed with money and gifts to say the least. It was definitely what our souls needed before heading off to New Orleans for another week of chemo.¬†

So for the week of chemo and all the unexpected events that were to come! Bailey started chemo on July 15th and it was decided by all of her oncologists at both hospitals that she would only get three days of chemo instead of the five that she had been receiving before. So Monday, day one, went on without any issues…she was feeling great and even asking to eat! Day two went just as well without any hiccups…then came the scary parts. On Wednesday morning at 2am, Bailey woke up with a horrible headache…this is not unusual as certain medications she is on will cause her to get really bad headaches. So I gave her tylenol and benadryl to help with the nausea she was experiencing as well. Little did we know the headaches would be the least of our worries…about 20 minutes later she began puking and puking and puking…it didn’t stop. She continued to puke every 20 – 30 minutes. Around 6:30am I realized she was acting a little different, but was still talking to us and responding. She asked to go to the restroom so as Mimi was putting her in her wheelchair we noticed her right arm wouldn’t move. Well things just went downhill from there…she began having blank stares when I was talking to her (absent seizures). So off we zoomed to the clinic…when we got to clinic things were still spiraling down so her oncologist decided she needed to go to the ER…thankfully we were able to get her to the ER just in time. Once she was settled in the ER her seizures started getting worse…she began shaking and staring off and not responding…just like last time. So it was decided that she needed to go inpatient so they could keep the seizures under control and so they could monitor her closely since we still had one day of chemo to go. After much discussions with Michigan it was decided that we would hold the chemo for a day to see how she did. Thankfully she recovered by Wednesday night was was up and talking to us on Thursday. Bailey received her last dose of chemo and thankfully with the added seizure medicines she didn’t have any other episodes…but that was only the beginning.

Ater much discussions between Michigan oncologist and our home oncologist, it was decided that Bailey would need to be removed from the trial study. Unfortunately we knew without a doubt that the Nifurtimox and chemo combination just wasn’t working for my sweet girl…that was definitely the cause of the seizures which means she could not continue receiving the Nifurtimox according to trial requirements. Thankfully her MRI proved she didn’t have progression to her brain which helped to determine the true cause of all these seizures…the trial medicine Nifurtimox. So here we are back at square one…

That being said we are traveling to Michigan tomorrow (my birthday) so Bailey can have scans again to see if this latest round of chemo did any damage to her remaining spots and also to discuss where we go from here. Unfortunately Bailey has had alot of chemo and has been on alot of the more agressive trials in the past 3.5 years, which leaves us with very limited options. What Michigan is hoping is that there will be a soft tissues spot that can be biopsied so she can get on the personalized molecular guided trial. That would be a great option for us but the problem is that her spots up until now have all been in her bones, meaning there would be no possible way for them to get a biopsy…but God works in mysterious ways so we are trusting that if it is meant for her to be on this trial, HE will open those doors…and if not then HE will lead us to where we need to be. I have also been in contact with her doctors in New York to see if there are any trials she might qualify for there and they will review her scan results fromthis week and let me know their recommendations as well…

So basically we are going to Michigan with only hope and faith! I truly believe my little girl¬†is¬†being healed even though we are at a crossroad again. I know God has opened doors for us when doctors told us there were no doors to be opened…so I believe HE will lead us there again. We are in no way giving up and we will find something…we just need prayers for guidance to know what is right for Bay. I don’t want her on anything that diminishes her quality of life…I want her to be able to have¬†more good days than bad…I don’t want her in a hospital room for weeks at a time…I want her to live and to be happy!¬†¬†This Nifurtimox trial was extremely hard on her…so I can’t say that I am totally disappointed that she won’t be able to continue on although it was helping to get rid of the disease…such a double edged sword sometimes! So please stand with us in prayer and faith that God will work all of this out as HE always does…We choose not to worry about things we cannot control and this just happens to be one of those things.

On another note…the same week that Bailey was getting chemo, experiencing seizures again and getting kicked off of her trial, etc…our sweet little friend Henley,that I have asked for you all to pray for so many times before, gained her angel wings and is forever cured from this horrible disease. Henley Hazel Romine passed away on Friday, July 19th and according to her parents, she went peacefully as only Henney could do. I cannot tell you how much this broke my heart into a million pieces…there are no words to describe the loss we feel and I feel crazy for even saying that because she isn’t my daughter…but they are our dear friends and they have fought just as long and as hard as we are…that is what is so devastating. Little Henley was full of life and her little spirit was unlike anything of a typical 4 year old. It is just so unfair! Unfortuantely I wasn’t able to go to Indiana for her celebration of life although I tried to work it out…but with Bailey just being released from being inpatient from her seizures, etc it just didn’t work out….once again that broke my heart as I just wanted to be there for Lynsey and Grant… so of course I had to tell Bay of Henley’s passing just in case someone mentioned anything in front of her when we go to Michigan, as all of the staff knew we were close to them and knew we hung out if schedules allowed for us to be there at the same time. In true Bailey fashion, my little girl blew me away as only she knows how. As I begin to tell her of Henley’s passing, her big blue eyes look back at me, as my eyes are filling with tears and she says “Momma dont’ be sad for Henley, it was her time to go. She has been having it really rough for awhile and sometimes our bodies just get tired. Sometimes even though we really want to keep fighting it is just too much, but I am sure she is already running around in heaven being silly.” Wow…what an old little soul my girl has! Of course her comment led me to ask her if she feels like her body is tired and ready to stop fighting…to which she answered ”¬†no momma it isn’t, but if ever it gets too tired I’ll be sure to let you know ok”…what exactly do you say to that…how exactly are you supposed to tell your 10 year old that you never want to hear those words, even though you know it is reality. On one hand my heart is so happy that even though she is only 10 years old she understands how life works…some people live to be really old and some people only get to be here for a little while…but on the other hand it breaks my heart that she knows such things at only 10 years old. She should not know how it feels to lose a friend at this age…she should not have to worry about telling me when she thinks her body cannot handle treatments anymore…she should not have to understand that her friend had the same cancer she does and this could be our reality…heck she shouldn’t even have to know that kids get cancer!!!! Seriously…I hate it and I hate what it does and I hate what it robs families from…it’s just unfair no matter how to try to look at it…what did a 4 year old do to deserve the unfair hand she was dealt…what did my 10 year old ever do to deserve this…we will never have the answers to all these questions and I doubt there will ever be a day where this all makes sense. What I do know is that Henley is¬† now in heaven, free from pain, free from disease…she is getting to be a kid! I know that any suffering she felt while on this Earth is nothing in comparison to all the bliss she is now enjoying in heaven…I know if she could let us know, she would say “Hey watch this” and then show us every good and blessed thing there is to see of that wonderful place. I know she will live out eternity with Jesus…and I am so happy I know all these things, because I cannot imagine being on a journey such as this without that type of faith! It is because of that faith we continue pressing forward…because we know that no matter what, we cannot control what happens here on Earth but we can control where we will spend eternity…and that brings me more comfort than anything else in this world!

Once again please continue praying for Bailey and continue praying for all of the other kiddos that are fighting just as hard as we are…Tripp,¬†Ashtyn, Tristin, Brooke, Kassidy, Cierra,¬†Noah, Alyssa,¬†and many others…¬†and¬†¬†for those families, like our dear friends, that must learn a new way of living until they meet again…NOTHING IS IMPOSSIBLE!

Jeremiah 30:17 “But I will restore you to health and heal your wounds, …”

 

HE gets his messages across one way or another ūüôā

 

 

July 13, 2013…Hamburger/Poboy/Baked Good Sale

Please join us tomorrow starting at 10am for our Bucks for Bailey Hamburger, PoBoy and Bake Sale. We will be at The Crossing at 107 Louisisana Ave, Rayne, LA (Old Mervine Kahn Building)! All proceeds will go towards Bailey’s medical expenses and to help with the expenses of¬†the trial study treatment she is currently on! We will have lots of other items for sale as well…some items include Bailey Prayer Necklaces, Bailey’s Bracelets, Hand Crafted Cards…and much more! We look forward to seeing you all there! It will end when we sell out ūüôā

 

NOTHING IS IMPOSSIBLE ūüôā

June 27, 2013…. Entering into HIS rest…

Well as you all know we have had a rough couple of weeks to say the least. Thankfully my sweet girl has crossed a few hurdles and was able to get out of the hospital and get back home on Tuesday afternoon. Her fever finally went away and her counts are finally on the rise. To say we were excited to get back home and into our own beds is a HUGE understatment as it has been almost three weeks since we have been away. We have definitely had enough of the hospital for awhile! She is still really weak and not back to herself just yet but no doubt she will get there.

So yesterday I received a call from her¬†oncologist in New Orleans saying that Dr. Sholler (oncolgist) in Michigan reviewed her MRI that was taken after the second set of seizures. Upon reviewing the MRI it was decided that Bailey should have a CT scans as well as an MIBG scan right away. We knew the MRI was showing some¬†“weird” areas in her skull¬†but couldn’t be sure what exactly was showing up…was it infection, progression, etc… with that being said¬†both oncologists have decided they want to know for sure if this is progression that is showing, so Bailey will be having the scans done in New Orleans next week.

We need more prayers…prayers that these scans will be clear…prayers that the treatment is still working like it was a month ago and getting rid of every last spot of this cancer once and for all…prayers that our storm is passing and our rainbow is about to shine through…prayers for a miracle. My sweet girl had endured so much in the past 3.5 years and she continues to battle on with the bravest of smiles and the most contagious laugh. She is truly my sunshine on these rainy days we have been facing…I cannot imagine how tired her poor little body must be, yet still she fights. So amazing!

As always I will be sure to keep you all posted as to what we find out although I am prepared for these doctors to be amazed by the grace of GOD once again…I hope they are baffled beyond belief because they can’t find a thing! Our GOD is so much bigger than all of this and there is no doubt in my mind HE has healed her.

Isaiah 58:8¬† – “Then your light will break forth like the dawn, and your healing will quickly appear…”