April 8, 2015… When the missing you turns to longing for you

My sweet sweet Bailey…where do I begin to tell you how much I miss you…right, I don’t have to because you already know. You are in Heaven now and get to know all sorts of things, like how much I miss you and how sad I am this week. I know you are up there in Heaven looking down on me saying “Mama I am fine stop being so sad, you will be up here with me before you know it”. Yes I know you are fine and I will be up there with you one day but that day cannot come soon enough. To miss someone is one thing but I am passed that point now…I long for the day I get to be with you again. I am longing for you like I have never longed for anything else in my life. I don’t know what to do with that….that is hard for me. My best analogy I can give is I feel like an addict going through endless withdrawals. I have never been a person that has had addictions in my life…don’t smoke, rarely drink (just ask daddy as he will tell you I am the cheapest date ever), have never tried drugs, not addicted to my phone, or work, or anything really…until you. I get why people go crazy over addictions and cannot think about anything else but their addiction. You my sweet girl are my addiction…your life was and still is a driving force to mine. Your life is necessary to mine…it consumes me every single day and you not physically being here anymore is overwhelming. Used to, before you went to Heaven, I would consume myself with how to save you, how to give you the happiest day of your life every single day, how to be the best mama I could possibly be for you…all these things that I could do for you because to me that is all that mattered in this world. You were this perfect gift from God and I was so blessed that God chose me to be your mama. I got to spend my life making sure you had the best possible life ever and that was everything to me. Now I am just consumed with how much I need and want you here physically. Everyday you are on my mind…I wonder what you are doing in Heaven, what we would be doing if I were there with you, what we would be doing if you were still here with me, how much I miss you, how much I wish I didn’t have to miss you…you get the picture.

This week has been a tough one and has made me come to the conclusion that when I meet “they” I will punch them in the face then kick them in the teeth….you know “they” who say time will make things easier, because clearly “they” didn’t know you and certainly “they” didn’t ask every single grieving mother if they agreed with that statement months after their children went to Heaven. Let me explain how easy things are now that you have been in Heaven almost 4 months. Monday I got an email from the company that I ordered your headstone with, informing me that contrary to me thinking it would be finished this week like I was told back in February, it will be another 8-10 weeks. Let’s just say I let my crazy show Bay…I know you were shaking your head at me like you used to do when I would let my crazy show when I didn’t feel like people, namely medical professionals, weren’t keeping your best interest in mind. Yep, I vented and wrote a big long email that told them what crap it was that I had to wait another 8-10 weeks to move you to your final resting place…. then realized that no matter what I told this lady it wouldn’t make your headstone come any quicker, so I took the high road and said I was sorry for venting my frustrations….even if it was a half hearted sorry I still said it, so it somewhat counts right?!? Well onto the next crappy incident I had to experience this week, all in the same day I might add. After I sent said email saying I was sorry, my phone rings. I look at it and seem to recognize the number but couldn’t quite remember why I recognized it, so I decide to answer….well let’s just say I should have let voicemail pick up, especially for the sake of Helton Cruz. Poor Helton Cruz from Texas Children’s Hospital. He was all to happy to let me know that part 2 of their CAR trial was opening and you had a spot on the trial. For a split second I got really excited, like I used to when we were trying to get you on a trial, but then ugly reality punched me in the gut and reminded me that I don’t get to be happy about those calls anymore. Instead I told Helton Cruz that he could take you off the list because you didn’t need treatment anymore but I would be sure to tell you about your spot when I visited you at the graveyard that afternoon….and then the floodgates opened. Most time I can choke back the tears and be somewhat polite when explaining that you live in Heaven now, but not that day. I really don’t remember the rest of the conversation but I know he apologized over and over and then I just hung up and immediately texted Dr. Bob. I don’t know why I texted Dr. Bob, except maybe that is what I always did when things like that came up so it was just habit for me. Of course Dr. Bob knew just what to say…he told me that the data from that trial aren’t that impressive anyways and it probably wouldn’t have worked….he reminded me that I couldn’t save you because there is nothing more I could have humanly done to save you,  to which I told him that theory didn’t fit well with the role of super mom I like to pretend I am in, you know the one that could save you because our love was stronger than any stupid cancer. He also reminded me you went to Heaven on your own terms…and he is right Bay. I know in my heart I did everything I could and took you everywhere I could to save you, but it just wasn’t part of the plan….this stupid plan that I want so badly to figure out. I want to know what you know now and see what you see so I can understand why too. Clearly that isn’t how life works and I will just have to be patient and trust my faith…but that is so hard kiddo. Life was so much easier when you were here…as stupid as that sounds to some people. The hospital life and cancer stuff was the easy part. You were here and I was right there with you every step of the way…you made it easy.  This is the hard part.

Keep watching over us sweet girl and please keep sending those signs. We see every one of them and know you are right there with us.  Visit me in my dreams soon sweetpea…I’ll meet you there. Love you to where you are in Heaven and back Bailey…


February 19, 2015…Broken and Defeated

My sweet Bailey…it’s been two months and one day since you went to Heaven. I wish Heaven were some sort of vacation place you went to, when Earth got to be too much, but you got to come back when the people on Earth missed you too much…because if we are being honest my sweet girl, you would have to come back…at least for a little while. Mama misses you too much…it’s overwhelming, and on most days, more than I think I can take. It is all I think about every minute of every day. If I am not thinking of all the memories we made, I am thinking of all the memories we will not get to make and that makes me extremely sad. I know you are healed now and Heaven is so much better than this Earth will ever be but I am still here and it sucks. I never pictured my life without you.

I just feel so broken and so defeated. My heart is broken into more pieces than I can even begin to describe. It literally breaks more and more everyday, even though I don’t know how that is even possible. I have a hard time going into your room lately. At first it was the only place I wanted to be because all your things are in there and I just had to be close to you and that was the only way. Now when I go in there I stare at your closet with all the clothes still hanging in there…clothes you will never wear again and it makes me sad. I watch your cats, especially Princess, laying on your bed and I know they miss you so much…and it makes me sad. I look at the big box of stuff we had to pack up from the hospital on the day you went to Heaven (because I can’t bring myself to go through those things just yet) and it makes me sad. I look at your cash register you loved and remember all the times you made us play store despite our desparate attempts to try to play something else, knowing I would give anything to play store with you every single day if you wanted to and it makes me sad. I watch you sister wave at your room and say “sissy” every time we pass it in the hall and it makes me sad to know she will not get to grow up with you. The other night I washed Ellie’s hair in Mimi’s bathroom and I went straight to your drawer of things looking for that little brush you used to let me borrow to comb her hair and I instantly got sad. The thing is, all your things are still in place and the house looks exactly the same…down to your medicine still being on the kitchen counter and it gives us comfort…but one thing is missing…YOU. I hope the sadness lessens eventually and my heart doesn’t stay broken forever because I don’t want to be sad everytime I think of you…you were never sad…EVER! We didn’t live a sad life despite all the challenges and setbacks we faced. It just wasn’t our way.

I feel so defeated on top of being broken. I am your mama and I couldn’t save you…I have a hard time with that. I couldn’t protect you and that is a hard pill for me to swallow. I know it wasn’t my job to save you…I know that is not what God intended my purpose in this life to be but I just can’t help it. It is instinct for me, protect my girls. From the day you and your sister were born, it became my mission in life…to protect you from anything that could hurt you. Maybe one day I will not feel so defeated but for now that is not the case. For now I feel like I failed…

Thank you for continuing to send me signs. I need them. I love my drive to work as I get to watch the sunrise and see the pink sky. You and I used to always watch the sunrise on our trips to the hospital in New Orleans and the pink skies were always our favorite…so yes I have noticed every single one of them since you went to Heaven and I LOVE them…so keep them coming. I also love how at just the right moment one of our favorite songs start to play as I am driving and I know it is you. I know you are trying to send me these signs to let me know you are ok…I get it…but my heart still misses you and I don’t think that will ever go away. So please don’t stop…

Visit me in my dreams soon lovebug…love you to where you are in Heaven and back.

I am not me without you...

I am not me without you…

January 19, 2015…The longest month and a day I have ever lived…

Well there is no witty saying or great news to share today. As most of you know my sweet girl went to Heaven on December 18th and I don’t know how to do life without her or how to live with this huge piece of my heart missing, so quite frankly life sucks now. Yes I know I still have alot to be thankful for and we have other kiddos that need us but our family is not complete without Bailey and it never will be ever again… we will always be minus one. No matter how much time goes by or how many years it takes for us to adjust to this new way of life she will always be our missing link. I honestly do not know how I made it one month and one day without her here. I have never been away from her this long… I hate it. Even though I became a mother at the young age of 21, I was not one of those people that pawned her kid off with others to get free time to myself or lived a life that revolved around my schedule. My life was actually quite opposite of that and always has been since November 4, 2002, the day I became a mom. My kids are my life…everything I do revolves around them and their schedules. I never had free time to myself and I was ok with that because nothing mattered more than spending every minute of my day with my children….that is what I cherish most in life. They are what I live my life for…so what does a person do when a big part of that is taken away. I don’t know…I don’t have that answer and I am coming to realize neither does anyone else that has lived this nightmare we are now living. People offer alot of advice on how things will get better, time will heal or how God needed another angel but I am also coming to realize almost all of those people that offer such ”helpful” advice are pretty clueless when it comes to that as well because they have not had to send half of their heart to heaven after only 12 short years. It is very easy to say those cliche things when it is not your child you are going visit in a graveyard every day. With that being said I guess you can tell I am pretty angry now…I was very sad, ok overwhlemingly sad, the first few weeks but now I am just angry. I am angry that we were dealt this crappy hand and even more angry that she was not healed on Earth despite our countless prayers. She was given to me as a gift from God but in no way did I want that gift to be taken back after 12 years…I know some people say “her job here was finished” but my heart is screaming that is not the case for me. My job as her mama is not finished. I need more than 12 years with her…end of story. I did not get enough time to finish being her mama. We were not finished making memories…I was not finished singing her to sleep at night…I was not finished wathcing Disney all day long because that is what she wanted to do…I was not finished planning her new room in our new house with her and disagreeing because hot pink walls were not working for me even though she swore that is the color that helped her relax… I was not finished fussing her for being sassy when she didn’t get her way (which wasn’t very often)…I was not finished watching her become a beautiful teenager…I was not finished being her mama.

I never knew my heart could break like this. It’s a pain that is always there and you are always aware of it…not like that kind that comes and goes. I literally miss her every second of every day…there is never a moment during the day when my thoughts aren’t on her. I know Heaven is a beautiful place and I truly believe she is healed and whole again. I know she no longer needs her wheelchair and she is able to run around again but I cannot tell you how much I longed to see her do those things again here on Earth. In the almost 5 years she fought the dreaded “c” word, I never imagined a future without her in it…in my mind she was always the kid that got her miracle and lived to tell about it. Even though we had conversations about dying and the reality was always lurking about, I never ever for one second felt that would ever become our reality. I was not prepared for her going to Heaven. There were no signs to lead me to believe that she would be going so soon. She didn’t struggle, she wasn’t in pain…granted her body was weakened from chemo but nothing out of the ordinary for her. After almost 5 years of watching her get treatment and recover from treatment, I would know what out of the ordinary for her looked like trust me. Since she was diagnosed I never left her side…I was with her every single day…I knew her inside and out…I never saw this coming….neither did her doctor for that matter. Guess that is why it just doesn’t seem real. I am having a hard time accepting that she is not coming back. I know we will all be together in Heaven again one day (which is the only reason at this point and time I continue to have faith because I know that is the only way to get to where she is) but it doesn’t make this easier. I am human and I want her here with me…nothing makes sense without her. I feel like a zombie that goes through the motions of life now because that is what I need to do in order to survive but I am not used to a living this way…we have never lived this way. Even when she was diagnosed we did not let that “c” word rain on our parade. We lived life and we truly made the best of every single day. We were truly happy and felt extremely blessed despite the crummy hand we were playing with. I am sure happiness will eventually find me again one day but for now my happiness left when she went to Heaven. I try for the sake of everyone else in our family to put on a happy face becasue I don’t want them to see me this sad or to be as sad as I am…but my heart is so broken. The little girl who taught me how to love is not here and it breaks my heart into a million pieces.

Please keep our family in your prayers because even though we always say “Nothing Is Impossible” life without Bailey truly seems impossible right now.

The missing piece of my heart...

The missing piece of my heart…

September 5, 2014…Finding the humor in our reality

Well no big decisions were reached as far as treatment goes due to some insurance complications and such, so Bailey started another dose of low dose chemo along with a new medicine, Promacta, in order to help her counts (specifically platelets) rise higher on their own without her stem cell rescue while we wait for the Texas hospital to call. We did another round of doxyrubicin/velcade even though she was at the borderline lifetime max. It is such a crappy decision to make but at the end of the day something had to be done so we chose to continue with another round. The problem with getting too much of the chemo, doxyrubicin, is that it can cause major heart issues…not only now but also in years to come. With that being said I am not one to worry about the “what if’s” but one who chooses to deal with issues as they arise…I know what the possibilites are if we continue and I also know what the possibilites are if we don’t. In usual Bailey fashion she handled chemo like a rockstar! She got chemo on Day1, Day4 and Day8 then she gets a three week break before she will get her final round that will put her right at the lifetime max. She also started the Promacta on Monday of this week and much to our surprise when we went to clinic yesterday her platelet count was 14!!!! I know this may not seem like a high number to most, as normal platelet counts range from 150-450, but understand this is HUGE for Bailey. Her normal platelet count 2-3 days after chemo is a whooping 0-3 and has been this way for 2 long years. This is why we spend no less than 2 days in the  hospital every week “tanking” her up with blood and platelets to keep her body going. We tried Neumega injections about 4 months ago and that was a nightmare!!! The medicine gave her fevers almost daily and just made her feel awful inspite of not even working…hence the reason I was a litte apprehensive about trying the Promacta. Let’s just say I pray over this medicine every time she takes it and I am so thankful God hears every prayer. Not only has it seemed to help her counts but she feels fine which is a huge blessing! We are praying things keep moving in the direction they are and her counts are higher with each day that passes.

Now that I have filled you all in on where we are with treatments I thought I would share one of many conversations that take place on our drive up to New Orleans. For a few months now, just Bailey and I go to New Orleans every week because Ellie is getting older and getting into everything, so it is just easier on everyone if she and Mimi stay home. Anyways back to our conversation…so at church we have been talking about Heaven…Is it Real? Who goes and how do we get there?…well of course we were discussing our thoughts and recent movies we have watched related to Heaven. These discussions then led to us talking about how we wanted things handled if we were to die. I ask Bailey what her wishes are if she dies and she proceeds to tell me that she does not want a big funeral, only close family and friends (yeah right little miss celebrity). She also wants to be buried in one of her “fancy dresses” and I MUST let her wear make up! She also wants it to be at Gossen’s Funeral home in Rayne because that is where our family goes (we have only been to funerals there obivously, so putting her anywhere else would be ludicrous to her). She also told me that she would rather not have it posted in the newspaper because it is a personal matter and not everyone needs to know her business….to which I burst out laughing of course and she did not appreciate that one bit. I even got the stare…you know the one where her eyes rolled back into her head and she looked at me like she was appalled that I had the audacity to laugh at something so serious…yeah that stare. I then tried to explain to her that she would be dead at that point so what would it matter! Anyways she disagreed with me and told me this was her funeral and she was going to plan it like she wanted…which caused me to laugh hysterically again! She told me to let people wear whatever color they wanted to and they didn’t have to wear black. She also made me promise that she would be buried by me where all of our other family memebers are buried…to which I reminded her that we all had a plot already that is paid on every year so that is exactly where she would be. Then she proceeds to tell me that we really should be discussing my funeral becasue she isn’t dying anytime soon and I was getting old! I then gave her “the stare”…the one that says be careful who you calling old missy!

So on to my funeral arrangements, that as it turned out really aren’t mine but what she says are mine, becasue she is planning that one too! I told her that whoever wanted to come to my funeral could come, the more the merrier! She then proceeded to tell me that she was not allowing weirdos to come…so if you are a weirdo I apologize now as her plans are to stop you at the door! She also told me that my nightgown, as I suggested for my burial outfit,  was not an appropriate outfit to wear because no one wants to see me in that except maybe Daddy.  I told her that I wanted my hair and makeup to be done by Allison at Salon Bliss because that is who I go to now so she would know how to fix me up…and again I was shot down. Bailey informed me that she would go ahead and do my makeup because she has been practicing and is getting really good at it but she would let Allison do my hair just in case it is nappy that day…she just can’t handle my hair if it is nappy….really Bay thanks!!! I also stated that I didn’t want people to feel like they needed to dress up and they could wear whatever they were comfortable in …again she said not happening! People that want to come to my funeral will need to wear fancy clothes because that is just what she wants.

So as you can see this was a very humorous conversation yet so important not only for me but for her too. So many times people pass away and their loved ones are left with the difficult decisions of trying to carry out ones’ wishes sometimes without even really knowing what those wishes are. I don’t ever want to burden my husband or children with having to decide how to carry out those wishes for me. Thanks to stupid cancer we are forced to think about things and talk about things that are uncomfortable for so many people…but really do they have to be…not at all! Dying is part of life (not kids dying of cancer, that just sucks and is a cruel part of life) but the circle of life and people dying from old age after they have lived a good life..that is the way it should be…and there should be nothing uncomfortable about that. So I am thankful that this stupid cancer forces us to think of these things that we would otherwise not talk about. We know where we are going when we die so there is nothing scary about that….it is actually quite exciting if you really think about it. Getting to see others who have passed before you and all being reunited for eternity…what is so sad about that…absolutely nothing. Although Bailey did inform me that she has no plans on dying anytime soon and I am not dying soon either so I should get too excited about Heaven just yet. She informed me that she and I will both live a very long life and we will die together one day, on the same day, when we are very old…that part made me smile :) She is such an old soul but at times, little things she says and does, reminds me that she is still my little girl so full of life and dreams…and for that I am most thankful!

Please continue to pray for my sweet girl…pray for her life to be a long and healthy one just as she sees it. Pray for complete healing as we already believe in and pray for other families going through this as well. September is Childhood Cancer Awareness month so this month I challenge each and everyone to do something for childhood cancer…donate blood, donate platelets, raise money for research…just do something in honor of all these kiddos who have passed away from this ugly reality and for all the ones still fighting it…. NOTHING IS IMPOSSIBLE!!!


Matthew 5:12 “Rejoice and be glad, for your reward is great in heaven…”

August 15, 2014… Be Still

Here goes the start of another long blog…so sit down and get comfy! As you all know Bailey started the new chemo, Crizotinib, last month and we were hoping this would be easy peasy and would buy us some time until the T-Cell trial in Texas opens up. Well as life goes, easy peasy isn’t always in the cards. The first week Bailey was on chemo was the week of my last post. That night we went to eat at one of our favorite restaurants, Tokyo, to celebrate the twins birthday. Everyone had such a great time and Bailey ate so well…things were good…or so we thought. The next day Bailey had some nausea and really didn’t want to eat very much. Well needless to say the nausea turned into vomitting and then she really didn’t want to eat anything. Of course being the persistent mother hen that I am, I used my tatics to convince her that she needs to eat to keep up her strength, to help the chemo work, blah blah blah blah (insert all the things you are supposed to tell your children when they don’t want to eat healthy or eat at all in this case). Well later that night I convinced Bailey to try to eat some noodles with butter and she did but after two bites it all came up…so what do you do when food doesn’t stay down, you convince them to drink…so on with that coercion. So in the days that followed I could get her to drink and take her pills but not eat. She kept saying her throat hurt and it hurt to swallow. Well considering some of the side effects of the chemo she was taking was sore throat, difficulty swallowing and decreased eating …I, as well as Dr. Bob,  just chalked it up to chemo side effects. Well after a week of this I was convinced there was something more to it as side effects normally get better after a week once the body adjust to the drug and that wasn’t happening. We had an appointment on Thursday, July 17th with Dr. Bob so I asked him if we could just do a scan to make sure the tumor in her neck hadn’t grown and wasn’t causing some of these issues (because the tumor in her neck is visible and can be felt by rubbing your hand across her neck…yes it is that big)…he agreed and said he was thinking the same so he scheduled a CT. Well thank GOD we did that scan! The scan showed the tumor was stable and hadn’t grown BUT there was something lodged in her throat. Can you guess what it was???? STEAK from when we went eat out the week before!!!! So apprarently when she threw up the next day, the steak (which wasn’t digested yet) came up and got stuck…and had been stuck ever since!!! How in the world my child was able to stay like that for a week, never complain and still manage to get her pills down everyday is simply beyond me. The GI doctor took one look at the scan and said an adult wouldn’t have lasted an afternoon with that in their throat…Bailey was going on a week! So our trip to get platelets and blood turned into a procedure to remove food impaction.

So on to the “simple procedure” of removing the steak that should only take about 30-45 minutes. We go across the street to the main hospital to do the procedure around 4pm and they take Bailey to start the procedure around 5pm. As I was sitting in the waiting room with Megan, our good friend that is also a patient of Ochsner’s (that has quickly become like part of our family), I notice that 45 minutes has come and gone but no one has come out to tell me how things went…then it has been an hour… then in walks the nurse. As she approaches us she says, “Well Bailey is doing fine but the steak is really impacted and we are not sure how long it will take to get it out…they may be in there awhile and possibly through the night.” UMMM ok so we wait a little longer??? Well after 3 HOURS a different nurse comes in to let us know they were finally finished and all of the steak was removed and the doctor would be in to talk to us soon. So again we wait…well here comes Dr. Serrano (which by the way is an AWESOME GI DOCTOR…so compassionate and so very caring). Dr. Serrano proceeds to explain that the steak was really impacted and becasue it had been stuck in her throat for a week, it began decaying. She explained that they stopped counting after 80 passes (in and out of Bailey’s throught with tubes and instruments) because it was coming out shred by shred. Bailey’s esophagus was exremely raw and would take some time to heal. She then went on to say they would come get us shortly to bring us to the ICU where Bailey would need to stay intubated and sedated for awhile due to the simple procedure not being so simple. Yes I said ICU!!! My poor girl has been fighting cancer for 4-1/2 years and a freaking piece of steak lands her in ICU on a vent…I mean can she catch a break already!

Well up to ICU we go…thank GOD Meghan was there with me (I mostly travel to New Orleans with Bailey by myself now, because it is just easier for Mimi to keep Ellie at home on clinic days because the older she gets the more she wants to crawl and not sleep so it makes for very LONG days when we all go)…I didn’t know it then but I would need someone there so I would have to keep my brave face on so I didn’t lose my sanity in front of everyone trying to take care of my girl…never did I think for one second that morning I would end my day in ICU with Bailey!!! As we enter ICU, there was my sweet girl…laying in that hospital bed while a machine was helping her breathe…another sight I could have went my entire life without seeing again. The last time I had to see her like that was when she was diagnosed… I hate it. No parent should ever ever ever have to see their child in that state…she is an 11 year old little girl that should be painting her nails, playing with friends, watching tv, playing with her sister and brothers…not laying in ICU on a vent all because she has to fight stupid cancer!!!! As much as I trust God and believe HE will get her through this…I still have days where I want to scream IT ISN’T FAIR!!! I am human, I am her momma…I get mad and angry at this situation…she is my daughter…she is only 11…CANCER SUCKS THE BIG ONE!!!

Thankfully, in usual Bailey fashion, she pulled through like a rockstar!!! The very next day they decided to try to wean her off the vent and she immediately started breathing on her own with no troubles! Daddy, Mimi, Seth, Aidan and Ellie all drove up to meet us and stay for the weekend (which made me so very happy). The time came to take her off of sedation completely so she could start waking up more and they could take the tube out of her throat…not a pleasant experience for anyone!!! As they were taking the tube out of her throat, Cody walked into the room and she looked at him and with the most hoarse voice ever and says, “Hi Daddy” and smiles…my heart melted. With everything she had been through those past two days I would not have blamed her one bit if she would have screamed, yelled or even tried to hit one of the nurses that were pulling that tube out…instead she remained calmed and was still. Always reminding me “Be Still…”

We decided to give Bailey a break from chemo to let her body heal and then retry but unfortunately when we tried again things did not go so well. She began having a hard time swallowing again, didn’t want to eat, ran fevers…overall just not a good fit for her. So we are back to figuring out what to do next. There are not many options left for her and unfortunately trials are few and far between due to funding and all the hoops and hurdles the FDA puts on trials and the eligibility to be on them. We are still waiting for the T-Cell trial in Texas to open but as of now we do not have a guaranteed start date. We have been talking to the doctors at MUSC in South Carolina to see about arranging treatment there but everything is still being discussed between them and our home hospital. Praying we have a plan soon as my sweet girl cannot wait much longer to start something. In the meantime we just pray and pray some more. It is so hard to have patience when you know this stupid disease could spread so quickly and without warning. I am so thankful we believe in God and in the power of prayer…quite frankly I don’t know how people can endure this journey without believing. Things get scary and the unknowns can get the best of you at times…well most times…but when you have faith and hope, you can always fall back on the promises of God to remind you that HE has your back. HE is totally aware of your situation at ALL times and is working behind the scenes, even when you can’t physically see it. For that I am thankful…we are blessed!

Please continue to pray for guidance…guidance for these doctors and guidance for me when I am making decisions that affect my little girl’s life. Never in a million years did I ever anticipate I would have to make such big decisions…you just don’t think of that when you have a child. Don’t get me wrong, raising a child is a huge responsibility in itself, as what you teach them and how you raise them is molding them into the adults they will become…but making decisions on how to keep them alive…well it sucks. It is a heavy burden that will constantly keep you questioning yourself. Again,  so thankful I can rest in God’s peace knowing HE IS THE ULTIMATE HEALER and no matter what HE is working things out for her…in every situation for the present and the future. We will never stop believing in her miracle…we will never stop believing NOTHING IS IMPOSSIBLE!!!

Mark 11:24 “Therefore I say to you, whatever things you ask when you pray, believe that you receive them and you will have them.”

August 2014



July 9, 2014….July is just a hard month…every year from now on

Well first and foremost I need to start this post by saying Happy Birthday to two very special little boys, our twins…Seth and Aidan! Today we celebrate them turning 10!!! So hard to believe how big they are getting and how fast they are growing up. They are such a joy and blessing to our family. Two little boys so very much alike and yet so very different, in so many ways. Our family is constantly entertained with these two and they are very much like there daddy in more ways than one! They are so loving, kind, protective and just all around great kiddos! We are so blessed to watch them grow up into the little men they are becoming! So once again HAPPY BIRTHDAY SETH AND AIDAN!!!! WE LOVE YOU TO THE MOON AND BACK!!!

So as you all know Bailey had great response to the new chemo combo. Unfortunately she received the last round of that combo she can get two weeks ago. She has now reached her lifetime max of the doxyrubicin and has to be taken off of that chemo…even though it was working. If she exceeds more than the lifetime max she is even more at risk of developing secondary issues such as heart failure, etc…so off she goes. We are now in “unchartered waters” as Dr. Bob calls it because we have decided to put her on the ALK inhibitor, Crizotinib. Usually the patient must be tested for a specific gene in order to be approved for this chemo but as usual God opened doors and things just fell into place. We were thinking even if the insurance did let the medicine go through I would probably be responsible for paying the entire medication out of pocket since she did not have the proper testing. The cost of the medicine would be approximately $10,000 for a 30 day supply…..eeesh right! ( And people wonder why more cures aren’t found….pharmaceutical companies are making too much money off of these drugs!!! But that is another discussion for another day). Thankfully God was working behind the scenes…I was in clinic discussing all these things with her oncologist and all of a sudden my phone rings. On the other end of the phone is none other than the specialty pharmacy calling to arrange delivery and to collect payment. Of course I was expecting to have to explain how I was going to get $10,000 to them in order for them to deliver this medicine she so desperately needed to start, but much to my surprise not only was the medicine being delivered in 4 shorts days but my co-pay was only a mere $25..talk about make a few jaws drop as I repeated this information while I was still on the phone with them!!!! Let’s just say I wasn’t the only one that thought God had a hand in this…one of the other doctors on Bailey’s team of doctors passes by the door, as Dr. Bob is letting everyone know the news I just received,  and says God is definitely working on your behalf, everything will be ok. So good to get reminders every now and again to let you know HE IS ALWAY IN CONTROL!

So my sweet girl started the new chemo this week and so far so good. It is an oral pill that she takes twice a day at home. She has had a little nausea but nothing too bad. We are believing this will work to keep her stable or improved until the trail in Houston is open. She is still on the waiting list for the T-Cell trial at Texas Children’s Hospital but there have been a few delays so until then we have to figure out how to keep this stupid disease from taking over. I received an email the other day saying the trial is now set to open sometime in August but no definite dates just yet….until then we pray! All prayers believing with us would be greatly appreciated :)

Now on to why July is such a hard month…Let’s just say this month has always brought craziness and complete heart break in the past few years. Last year at this time Bailey was on the Nifurtimox trial in Michigan and was experiencing several seizures. I will never in my life forget how I felt watching her go through that. It is something I pray God will erase from my memory over time…it was devastating! She was severly underweight from the medicine making her so sick and things just weren’t good…she was not in a good place. July also marks the month that we lost our dear little friend Henley. How I wish I could turn back the hands of time for the Romines…if you ever had the chance to meet this precious little girl you would understand just how special she was. So hard to believe that July 19th will make 1 year that Henley left this Earth…so heartbreaking. Hearing the devastating news of children passing away from this awful disease is always hard but it really hits home when the family is so dear to your heart. Only one short month before Henley passed we were in Michigan at the same time her family was. We went eat dinner, played cards in their room until very late at night…we were all together just going through all this cancer crap together but it didn’t matter because our kids were there and we were all fighting this together. We are so thankful we had that time with her and we were able to make those memories with the Romines. Please keep the Grant, Lynsey and Cooper Romine in your prayers over the next few weeks but especially on July 19th….my heart aches for them and although I understand many of the struggles they had to face in Henley’s 4 short years on Earth, I can’t imagine this hurt…I am so grateful that even though things are not the best for us and this disease has spiraled out of control…I am not in their shoes and because of this I remember to thank GOD everyday for each day I get to spend with Bailey. Some days are harder than others but at the end of the day she is here with me and that is all that matters.

As always, thank you for the prayers and support…NOTHING IS IMPOSSIBLE!!!!


June 10, 2014…And at the end of each day we still have hope

Well here it goes…so much to update and so very much to say. Not sure where I should begin so I will just pick up where we left off. As you all know Bailey was doing well on the irinotecan/temodar chemo with little side effects or so we thought…that was until it was time to scan. Then there it was again, like a punch in the gut…more progression. My precious baby girl was lying on that MIBG table, as I was staring at the screen that was lighting up everywhere in her little body. I wanted to cry (sob really), scream, punch something, throw that monitor across the room, stomp around like a 2 year old throwing a tantrum…but instead I sang to her…because that is what she wants me to do when she is in scans…sing or read or make up some fairytale story about fairys or mermaids, so that is what I did. After scans were over, Dr.Bob came to get me from clinic to discuss the news… he could see it on my face…I already knew what he was going to say. I already knew that this freaking cancer was spreading like wild fire all over my sweet girl’s fragile body. I had already prepared myself for the “it’s probably time to call Hospice and enjoy the rest of this time with her” speech that I received last scans, but much to my surprise that was not the conversation that took place. In fact, the conversation that happened was exactly what I had been praying for since January, when we first received the news of progression….a conversation that says maybe it’s possible…we don’t know for sure and I can’t make any guarantees but maybe there is some hope…we will try!

So after a lengthy discussion, Dr. Bob agreed to try a new approach. This new approach would involve more chemo and alot of unknowns, but at the end of the day it still gave us hope…hope that it might work…hope that we might get more time with her. Just plain HOPE! The chemo he was willing to try on her is a combination of Doxyrubicin and Velcade. The catch with these two chemos is firstly, velcade isn’t a chemo that is used for neuroblastoma and secondly, doxyrubicin has a lifetime max amount a person can get and Bailey is so very close to that amount…. so this would take some creativity on his part to formulate just the right dosage amount to safely administer an amount that would be effective. Thankfully, we pray for God’s guidance in everything where Bailey is concerned and Dr. Bob was able to come up with a great plan that will carry us over until the new T-Cell trial in Houston (that we are praying Bailey gets a spot on) opens up this summer…but remember, this is only IF it works.

So Bailey started the first cycle of this new chemo combination and all went great! She handled the chemo like a rockstar and there were very little side effects. She was able to get 1-1/2 weeks break in between cycles before having to start the second cycle. The second cycle went great as well and was seeming to go exactly like the first one until…the horrific pain started. Bailey started complaining that her left leg was hurting…the pain was gradually increasing as each day passed. At first we were thinking it was a side effect from the chemo, Velcade, as it is known to cause horrible neuropathy (nerve pain). We increased her gabapentin (nerve medicine) as well as put her on pain meds…but the pain only got worse. Needless to say, the pain was at an all time high last week and then a fever. Of course, anytime a fever happens it gets us a trip to the ER. Any other time a trip to the ER would be no big deal but this trip happened on Tuesday morning, as we were getting ready to travel to New Orleans for scans. So here we were all packed up and ready for a two day stay in New Orleans but instead I was rushing my sweet girl to the ER at 5am. Let’s just say my nerves were shot…I knew she needed to get to the ER so we could address the fever and of course the pain but I also knew this meant she would probably not be able to get scans that we so desparately needed to know if the new chemo was working. Upon arriving at the ER it was determined that the horrific pain and the unusual looking rash that appeared only days before was probably SHINGLES!!! Yes, on top of everything else my poor baby has had to endure, now she is fighting shingles! So after several phone calls to her oncologist, it was decided she should probably be admitted inpatient to make sure the fever stayed away and to make sure the rash was definitely shingles. Thankfully, her oncologist knows how I am regarding her care and allowed me to drive her to Ochsner’s in New Orleans, as oppposed to being sent by an ambulance. After two IV antibiotics and a quick stop to pick up Mimi and Ellie, we were on our way to New Orleans.

Upon arriving to New Orleans, we were informed that Bailey would indeed be able to get the scans! Praise GOD, another answered prayer! So off we went…rushing Bailey to get her MIBG injection before bringing her to the inpatient floor on the 4th floor of the hospital, all the while trying to keep Ellie occupied, fed, etc and checking into the hotel that is connected to the hospital so Mimi and I would be able to switch out between the girls. Yes, it was a crazy day to say the least…but as always we made it work and all went well! Bailey was able to get her scans, as well as a biopsy, that proved she did have shingles. Thankfully she only had to stay one night in the hospital before they let her out…we agreed to stay an extra night in New Orleans just to make sure the fevers would stay away and so she could receive another dose of IV antibiotics.

So back to the scan part! As she was getting scans, I kept praying (as I always do) and reading all my scripture verses I keep on hand… as it helps me from letting my mind wander to places it doesn’t need to and helps me to focus on God’s promises as I should…because that is where our focus needs to be…on God’s promises in HIS word and not on reports of man (ie scans). Well, as I am reading and wrestling with trying not to analyze the monitor showing all the places where the disease is, I came across one of my favorite verses in Matthew 8:13 “as you have believed so let it be done for you”. At that very moment a peace came across me as I decided to look at the monitor. For once I didn’t feel anxiety, fear or panic…I felt true peace that can only come from God. My heart was at peace in knowing that God hears our prayers and knows the every desire of our hearts…He knows we believe in her healing..no matter what!

After scans were over we discussed results…and results were “Disease is stable”!!! Praise God praise GOD!!! Stable is great news…stable means the new chemo is working…it is keeping this awful disease from progressing even more. We are so very thankful for all the prayers because we know it is not chemo alone that is stopping this disease…we know it is prayers and it is GOD! Of course we would have loved to see clear scans, but we also know that is not how God works…HE doesn’t always give us want we want when we want it…but he does give us what we need when we need it…and that is where we put our faith. Our faith is in HIS promises that “by HIS stripes she is healed”…and at the end of the day I do not need clear scans to prove this. I need patience to wait on God to reveal her miracle in His timing. Until then we will be thankful in everything, every situation and for every blessing…because we are blessed! Hard times will come but during those times is when our faith is put to the test and when we are taught to trust and keep that faith alive. We will never give up…we will never lose faith! We believe in her healing and we believe NOTHING IS IMPOSSIBLE!!!

Psalms 39:7 “But now Lord what do I look for? My hope is in you”

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 :)


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 :)

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 :)

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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