November 29, 2012…Up, Up and Away

Let me first say that I hope everyone had a great Thanksgiving holiday…I know we did! It was so great being home with family and friends.

Well we have dates! Dr. Sholler’s office called to give me scan dates :) We are flying up on Monday, Dec.3rd and Bailey will get scans on Tuesday and Wednesday! Right now we have no idea how long we will be there because so much depends on what scans show and what her counts will do betweeen then and now. To say the least,  we are so excited to meet this new team of specialist. I am very hopeful that we will have awesome scan results and even better news of what her upcoming treatments will be. I am so at peace with our decision to move treatments to Michigan…It is a great feeling.

Bailey has been doing really good. Her counts were staying really low for awhile, even with the stem cell rescue she received on November 8th but thankfully on Monday, when we were at Tulane prepared for a second stem cell rescue, we got good news :) Bailey’s counts more than doubled and Dr. Kanter felt like she would be ok not using another bag of her precious stem cells. Let’s just say this was one happy momma! As most parents of a child with cancer knows, stem cells are very hard to harvest which means that you have to use them as sparingly as possible and only in specific scenarios. Stem cells are used to help the body recover from harsh treatments. Unfortunately with neuroblastoma, the stem cells must be their own and cannot come from a donor…making the process that much harder. When Bailey was first diagnosed we tried harvesting stem cells four times and were not successful. It wasn’t until we went to New York and followed a regiment of chemo that was suggested by the doctors there that we were able to collect. Thankfully at the time we collected 7 bags, which is really good! Since Bailey has received so much chemo and so much radiation it becomes very hard for her bone marrow to recover after treatment making it necessary to have stem cell rescues. After the first MIBG treatment that was paired with the chemo Vorinostat, we had to use 4 bags of her stem cells to make sure she recovered, only leaving us with 3 bags. When it was decided that she would have a second round of MIBG we knew it would probably be necessary to use even more of the dwindling stem cells but since treatment worked so well the first time we felt it was in her best interest to go forward with that plan. With all that being said I was praying like crazy that the one bag we gave her on November 8th would do the trick and thankfully it did! Her counts are recovering, very slowly, but we will take anything at this point! It is very important to have some stem cell bags in reserve for future treatments if needed, and thankfully we do!

So the plan is to go up to Michigan on Monday, do her scans on Tuesday and Wednesday, then meet with Dr. Sholler and her team on Thursday. We need big prayers that Bailey’s counts, specifically her platelet counts, begin to recover quickly and at a higher rate than they have been. In order to start any trial you have to meet certain requirements with regards to blood counts, etc and right now she isn’t even close…so please please please join me in praying that her counts double everyday and she will be fully recovered so we can get on a maintenance plan as quickly as possible…and I say maintenance becasue I am standing in faith that we will get a clean report from the upcoming scans.

My little girl is amazing to say the least…despite her low counts, multiple hospital trips every week, countless transfusions over the last 4 months, being poked and prodded everyday, etc. etc…she still wears her contagious little smile everyday :) She is still keeping up with all of her schoolwork, still going to guitar lessons every week, still playing wtih her brothers and still making us laugh! She is such a remarkable little girl and has endured so much in her short 10 years…I just know she was meant for great things and I cannot wait to see what her future holds.

I will keep everyone updated once we get up to Michigan…until then please continue praying for high counts and safe travels…NOTHING IS IMPOSSIBLE!

Ruth 4:15…”And may he be to you a restorer of life and a nourisher of your old age…”

Thanksgiving Day Fun 2012

November 14, 2012… Hanging in there

Well there is not much news for me to report. Bailey’s counts are still really really low and we are still making trips several times a week to the hospital. She has been on neupogen shots everyday for almost four weeks now. She has been needed blood pretty much twice a week and platelets 2-3 times per week. On Thursday of last week we went to Tulane and she received a small bag of her stored stem cells in an effort to help her little body in this recovery process. I am praying like crazy those stem cells kick in soon so her counts start to at least hold stable and eventually replenish.

I am still waiting on a call back from Dr. Sholler’s nurse to let me know what dates we need to be in Michigan. As of now I know it will be around the first week of December but that is all I know. We will do a full work up of scans while we are there as well as discuss where to go from here and hopefully start treatment (but that will depend on her counts). I know they have alot of promising treatments and really feel at peace with our decision to go there. To say I am ready for some normal in our lives would be an understatement…although I have nothing but faith that Dr. Sholler will help us get there (along with lots of prayers of course).

So for now Bailey spends her days doing school work with Mimi while Cody and I go to work. She is so ready to go back to school with her friends but thankfully we are able to keep up with the work at home until that is possible. She did however begin taking guitar lessons (yesterday was her first lesson) and she LOVES it! Cody and I bought her a guitar for her birthday because she has been expressing interest in wanting to learn how to play so we decided that would probably be some good therapy for her soul and so we got one for her! It is the cutest little guitar ever…fits her personality perfectly. Anyways she will continue with lessons once a week (or for years and years as she puts it) so maybe in the near future I will have a video of her playing something fabulous like Taylor Swift!

Please continue praying for her counts to recover, for a healthier future and most importantly for cancer free days ahead! Nothing Is Impossible!!!!!

November 4, 2012….. The day my life was forever changed…Happy Birthday!

Bailey,

Today is your special day! You are 10…(wow that makes mommie feel so old)! Let me begin by saying how proud I am of you. You are such an inspiration to everyone around you but especially to me. You make me do more than I ever thought possible and fight just a little harder when giving up would be so easy. You have made it my personal mission in life to prove doctors and statistics wrong because I cannot imagine my life without you.  I never knew what it meant to love until you. You have shown me the meaning of so many things and I am forever grateful that you came along in life to do that for me.

If someone would have told me our life would end up the way it is today I would have laughed at them and asked them if they have fallen on their head recently…but seriously our life is nothing short of amazing! It is really so much better than I ever would have dreamed. Despite the crappy cancer thing, we really have an awesome life. I never knew that I would have an awesome little girl that would make me so proud simply by doing the everday things in life that so many people take for granted. The joy I felt the first time I held you in my arms was simply breath taking but how lucky am I to get to experience those moments every single day with you! Every time you crawl around our house getting yourself from here to there my heart smiles because we were told you would never use your legs again but that is not the case….every time you tell me you need to go potty my heart smiles because we were told you would probably have to wear diapers or get cathedarized everyday because the tumor made you lose all sensation of when your bladder was full but that is not the case…everytime you dress yourself or change your outfit numerous times before we leave the house to go somewhere my heart smiles because we were told you may never be able to function on your own again because of the nerve damage but that is not the case…everytime you blantanly ignore me as I give you shots in your legs at night my heart smiles because you have come to trust in me so much that you could careless that I am about to insert a 1″ needle in your leg,  just as long as I don’t make you miss one second of whatever Disney show you are watching…everytime you hug Dr. Kanter or tell her thank you for helping us find some new treatment that just might save your life my heart smiles because I know you realize that God sent us this awesome doctor to help us navigate through life with cancer…everytime you offer encouraging words to the little kids in clinic when they are scared to get their port accessed despite having your own IV pole accompanied by several bags of blood and/or chemo and numerous bandaids on your own hands and arms because you just had to get stuck several times in order to get an accurate blood draw, my heart smiles because you have not lost compassion for others despite all the reasons you have to feel sorry for yourself…but most importantly my heart smiles every single day because you NEVER lose FAITH despite the horrible  odds you are up against. You still say a prayer every time something scares you and you make sure to ask others around you to continue praying as well because you know that is the only way we will make it through all of this….you believe in GOD and the power of prayer. 

You, my little girl, are amazing. You are my constant reminder that life is what you make it. I live my life so differently now because of you and I will be forever thankful to you for doing that for me. I am so happy that we are celebrating 10 awesome years of your life today. You give us so many reasons to celebrate!

 

Happy Birthday Bailey…mommie loves you to the moon and back! Always remember NOTHING IS IMPOSSIBLE!

Happy 10th Birthday