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 :) 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”

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 :)

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 :)

 

 

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 :)

 

NOTHING IS IMPOSSIBLE :)

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…”

June 19, 2013….Not even sure how or where to begin

So as many of you already know this week has been one of the hardest weeks of our lives. In no way could anyone prepare me for the past weeks events. Bailey was due for Round 3 of chemo so we headed to Ochsner’s in New Orleans on Monday, June 10th prepared for 5 days of outpatient chemo as usual. The week started off good…she was handling chemo really well, getting more aquainted with the staff and her new oncologist Dr. Vasquez and things were looking much better than the weeks prior. Well much to our surprise our week would not stay that way. On Wednesday morning at 5 am, Mimi and I were awoken by Bailey having a seizure right there in the hotel room. The seizure only lasted a minute or so but felt like an eternity! I immediately called 911 as Mimi held Bailey and talked to her trying to let her know she would be ok. By the time the ambulance arrived, the seizure had passed and Bailey was talking to us but completely unaware of what had just happened. She was very emotional and rightfully so. She couldn’t hold herself up or use her arms or legs which was very frustrating to her and did not help the situation at all. The EMT’s got her into the ambulance but almost minutes after getting into the ambulance she had another seizure. This one lasted a little longer than the first one and again felt like an even longer eternity. Upon arriving at the hospital ER she had 2 more seizures that lasted about 5 minutes each. Thankfully the doctors were able to give her medicine to help her body come out of it and to help her rest. Needless to say we were devastated that she was going through this. The doctor ordered a CT scan of her brain immediately so we could see exactly what was going on since we weren’t sure what was causing this to happen. Thankfully the CT scan was clear and showed no lesions. She was given fluids and more seizure medicines to make sure this didn’t happen again. Due to all the medications she received she was pretty out of it for most of the day. An EEG was also done to confirm if this was definite seizures and the results came back positive. At this point we all thought the trial medicine she was on was probably the culprit as this is one of the common side effects but since she was just granted a lower dose we couldn’t be 100% sure. To be on the safe side Dr. Vasquez went ahead and admitted her inpatient so we could monitor her a little more closely and to make sure she recovered properly from all the trama her body had just went through. It was also decided that chemo would be held for the day to give her body a chance to rest before hitting her again with something else. Thursday chemo resumed and she was still groggy but was talking to us and seemed to be doing ok. She was having some vision issues but it was more than likely being caused from all the medicines. On Friday she got chemo again and seemed to be making improvements as well….until that night. Around 8pm, Mimi and I were talking to her as we watched Disney and all of a sudden I noticed she kept staring at the wall and laughing. I preceeded to ask her what she was laughing at and then it happened again….another seizure. I called the nurse immediately to let them know what was going on. Little did we know that was only the first of three she would have. The third and final seizure lasted 45 minutes and was this momma’s breaking point.

No one can ever prepare you as to how it feels to watch your child have a seizure. As her little body jerked, her eyes rolled back in her head and she began vomiting,  all we could do was watch and wait and pray. The helplessness you feel is indescribable. I really felt like we were going to lose her. In the 3.5 years we have been battling this horrible disease I have never felt like I did this past week. In those 45 minutes of the last seizure, I prayed harder than I ever have in my entire life…and I cried harder than I ever have. I kept begging her to come back to us…I kept telling her she was ok and we were right there with her…I kept reminding her how much we loved her and needed her here with us…I told her how scared I was….and of course I prayed and prayed. I thought it would never end but it did…and she was ok. Thankfully she doesn’t remember any of it and how I pray that I will forget too…although it is sketched into my mind and I don’t think I will ever forget.

With all that being said you can see why I don’t know where to begin…I feel like this week has been going on forever with no end in sight. After her last episode of seizures, she underwent an MRI as well as a Lumbar Puncture to make sure we weren’t missing anything (as if my girl hadn’t been through enough already). The MRI showed the lining of her brain looked a little out of sorts so to speak but that is more than likely due to the chemo and the doctors are not too worried about it at this point, especially since she just had scans less than a month ago and all images of her brain were clear. Thankfully the lumbar puncture samples proved there was no infection that we couldn’t see trying to attack her brain, which was  a big relief. So basically to sum it all up, these seizures are being chalked up to side effects from Nifurtimox ( and seizures is a very common side effect when taking this drug so it is not totally unexpected). So for now she is on Keppra tiwce a day every day to keep the seizures away and we are praying this medicine works like it should, as I NEVER want her to go through that EVER again. Such a double edged sword this treament…on one hand it is getting rid of the cancer and helping my girl to get clear again while on the other hand it is causing so many issues that just aren’t fair…really comes down to how much are we willing to put up with for her to be on a treatment that works and that will give her life. CANCER SUCKS AND I HATE IT WITH EVERY LAST CELL IN MY BEING…that’s how I feel about it if we are being honest…I wish cancer got cancer and freaking died!!!!!!

So here we are today…she was finally discharged yesterday from Ochsner’s and no sooner do we get home and there comes the dreaded fever that we all so desparately pray stays away when counts are low… because all cancer parents know that means one trip to the ER followed by an extended inpatient stay! Off we went again to the ER after only 10 minutes of walking through our front door. Upon arriving at the ER the fever decided to take a hike which was even more frustrating since I drove like a bat out of hell trying to get her there before it decided to spike so high that maybe another seizure would be triggered. The doctors decided that she should have cultures drawn and antibiotics given just to be on the safe side so that is exactly what we did. Once the antibiotics were finished they decided that she could go home again unless the fever came back. Of course we were thrilled with that news as that is not the typical protocol for neutropenic fever…well let’s just say cancer does what it always does and throws another curve ball at us. Sure enough I am signing discharge papers and just as I finish the nurse is taking one last set of vitals and boom there is the fever again…so it was decided we were staying! Needless to say we got into the room around 2am so we didn’t get a good nights rest but that is ok…at least my girl was safe and right where she needs to be for now. Today she is doing good…she is up and playing on her phone and watching Disney of course. Hopefully this fever will go away in a few days and we will get to go home to let her finish recovering before it is time for her next round of chemo.

As always thank you for all the prayers and kind words we have been receiving. They definitely help us to remember just how much support we have. I apologize if I haven’t answered everyone’s messages but I promise I will try to get to them as soon as I can. In the meantime please keep praying…pray for the seizures to stay away forever, pray for continued improvement with treatment, pray for healthier days and mostly pray that her little spirit stays as positive as it always has been. She is simply amazing…after everything she has been through and is still going through she has never lost her contagious little smile…that little smile could light up the darkest of days. She is my sunshine!!!!

NOTHING IS IMPOSSIBLE :)

 Thank you to Jenny, one of our favorite nurses at Ochsner’s for sharing the below with us…she was with us during Bailey’s seizures on Friday/Saturday and saw the effect it had on us to watch Bailey suffer through something so traumatic. The next day she came in and told us that this passage made her think of us…and it was just perfect :)

2 Corinthians 4:6-9

For God who said, “Let light shine our of darkness, made his light shine in our hearts to give us the light of the knowledge of Gods’ glory displayed in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen, since what is seen is temporary, but what is unseen is eternal.

June 5, 2013…The process of recovery and a very hard “see you later” because we are not good at goodbyes

Life has a way of keeping us on our toes these days. It has been non-stop to say the least. As you all know Bailey had scans in Michigan the week of May 21st and thankfully results were good. Scans are showing that the Nifurtimox trial has diminished two of her spots (one in her leg and one in her hip) and is shrinking all of the others. We also got the results from her bone marrow biopsies and she no longer has disease in her bone marrows…Praise GOD!!!! We are moving in the right direction! We still have a long way to go but thankfully the power of  prayer is working to rid her body of all this cancer once again. While we were in Michigan we got to hang out with Henley Romine and her family (one of the many families we met while getting treatments in NY). Needless to say we were so excited that our schedules finally coordinated so we could see them, as it had been a year and we sure did miss them dearly! We have stayed in touch with them over the year, of course, but we finally go to spend time with them in person and Bailey couldn’t have been more thrilled. Henley aslo had scans the same time as Bailey and they also received great news that Henley’s treatments are keeping her stable…so we had so much to be thankful for and so much to celebrate!

Now for how Bailey has been doing while recovering from her last round of chemo….not so good! The process of recovery from chemo is so so HARD on her. My poor girl is struggling to say the least. She is still having a hard time dealing with nausea, vomitting, diarrehea, etc. Needless to say she has lost a total of 17 lbs since April 1st and boy does it show. She is so thin and fragile….breaks my heart to see her like this and trying everything in my power (appetite stimulants, bribery, threats, etc)  to make it better yet nothing is really working. As if dealing with those issues weren’t enough, her little body decided to start running fever on the Tuesday after returning from Michigan. Although she was admitted inpatient from Tuesday, May 28th – Saturday June 1st, thankfully all tests came back negative for any infections which basically means her body was just running neutropenia fever (from her immune counts being so low for so long).  After a few days of lots of IV fluids and antibiotics we finally got the fever under control and we were able to go home.

We are still battling the “no appetite” thing but thankfully we started a new appetite stimulant, Marinol, that seems to be helping. I really didn’t want her on this particular appetite stimulant but we are running out of options and the next step is a G-Tube (feeding tube) which we are trying to avoid at all cost. She is now eating at least two small meals a day which is a big improvement from her half of an apple and one-third of a banana per day. Her counts are still slowly coming up and we are so grateful as she will have to start chemo again on Monday, so we have been praying her counts will recover enough so she wont go into chemo week feeling horrible. The Michigan hopsital has also decided to lower her dose of Nifurtimox (as of yesterday)  so she will now take 5 pills instead of the 7 per day she was taking…praying this will make a big difference with some of the issues we are still having but still work to continue getting rid of those horrible cancer spots at the same time. My sweet girl is still not herself and her laughter and silliness are missed terribly!!! Most of her days are spent in bed napping off and on or watching tv. Thankfully we have been able to have some of her favorite people come and sleep with her which has helped to cheer her up!!!! So a big thank you to Jordan Daigle, Megan Fontenot and Brittany Arabie!!!! You guys rock!!! Cody has also set up her mattresses in our living room so she can have “camp outs” in an effort to try to make our last few days at home as fun as possible for her! He even slept with her last night in the living room since she didn’t have company over…the little smile on her face was priceless! (YES I know my husband is pretty amazing and we are so blessed for everything he does for us!) Mimi has also been a huge help as always…Really don’t know what we would do without her! She has always been a pretty amazing mom but she certainly out does herself when it comes to being Bailey’s Mimi!

And for the last, but certainly not least, topic of discussion…our wonderful Dr. Kanter. As some of you already know, Bailey’s oncologist is moving to South Carolina and will no longer be in charge of Bailey’s care. Let’s just say it took me awhile to absorb this information and I had a slight meltdown when she broke the news to us in clinic a few weeks back. (Mimi blamed it on the preggo hormones but let’s just say that was not the case, I was devastated). The thought of this amazing woman not overseeing Bailey’s care absolutely scares the heck out of me. She was the first person we met on our first trip to Tulane at 1am when Bailey was being rushed into emergency surgery when she was diagnosed. She is my go-to person for each and every one of Bailey’s medical needs, she is there for us at all hours of the day and night when Bailey is having issues and I need direction, she moves heaven and earth to help me get the best possible treatments for Bailey no matter what obstacles are in the way, she is my voice of reason when I am at my wits end with the craziness that life with cancer throws at you, she has become our FAMILY…I feel like we are losing part of our family!!! Thankfully this awesome lady has always had Bailey’s best interest at heart. Never once did she make us feel as if Bailey was just another patient or just another number in her files…she always always made us feel as if the treatments and decisions she made for Bailey, would be the same treatments and decisions she would make for her own children. To say Dr. Kanter is our God-sent is an understatment! In true Dr. Kanter fashion when I said we didn’t feel comfortable staying at Tulane, she said I already knew you would say that and I already have someone in mind. (Seriously this woman is amazing). With that being said, to fulfill my request she referred us to Dr. Robert Vasquez at Ochsner’s Hospital in New Orleans. She reassured me that he would take care of Bailey the same way she did and boy was she right!!! We finally had a chance to meet Dr. Vasquez and his team on Monday of this week and we LOVE them! (Perhaps when I told Dr. Kanter we were moving to South Carolina with her and I would become her nanny for her kids she understood I meant business…LOL just kidding we are not moving although the thought did cross my mind :)   ) So as of Monday, Bailey is officially going to Ochsner’s for our at home hospital. We are going to miss the staff at Tulane tremendously (Sheri, Mary and Emily have also become our family, shoulder to cry on, mediator when I loose my mind and want answers NOW  – because patience has never been my virtue) and it breaks my heart to know that we will not be seeing them every week like we have for the past 3-1/2 years or emailing them several times a day to let them know what is going on with Bailey…but at the end of the day I have to do what is best for Bailey…. and Dr. Vasquez, and his vast knowledge of this horrible disease that is trying to take my sweet girl from me, is what is best right now if we can’t have Dr. Kanter.  So for now we will say “See you later” to Dr. Kanter because I don’t believe in goodbye’s and let’s be honest…she can’t get rid of us that easily :)

As always we appreciate all of the prayers and support. We ask that you continue to pray for Bailey…pray for her little body to get the break it deserves. Pray that this cancer is going away for good. Pray for her laughter and silliness to come back to us and soon!!! Pray she begins eating again. Pray for healthier days that are free from cancer forever!

P.S.  Tomorrow is the day we find out what Baby Reed is – or Little Fetus as Cody and I have been callling it since we cannot decide on names! I will try to find the time to post on here as soon as we know (and yes I know I have been slacking on my updates as several of you have told me lol)

 

Our God-Sent Dr. Kanter!