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…”