Monday, February 28th….

Never Let Go

As tomorrow approaches I cannot believe that it has already been 1 year since Bailey’s journey began. Some days it feels as if this is how life has been for such a long time and other days I feel as if it happened only a week ago. I look back over this past year and think of how much our life has changed. Before she was diagnosed, our busy days were filled with school, work, homework, girl scouts, and when I could find time to go to the gym or grocery store. Life was definitely different then and looking back my worries were so very petty. What I wouldn’t give to have that life back, but on the other hand I know that we would have never experienced all the great blessings we have because of her illness.

Her illness has taught me about what is really important in life. I never take the little things for granted anymore. I now appreciate the fact that my 8 year old still wakes up in my bed instead of her own because it means that we are at home in our own bed, the memories of her running through the house even though I told her that we walk because she could still walk then and didn’t have to rely on a wheelchair, kissing her scraped knees or mosquito bites because those were booboo’s I could fix, arguing with her about how long she had been in the bathtub because back then I didn’t have to carefully sponge bath her every night using the gentless of touches becasue her nerves are so sensitive….those are just some of the things I can really appreciate now because of how much our life has changed.

Watching my little girl face some of life’s hardest struggles knowing that I cannot fight this battle for her has been one of the hardest things for me not only to watch but to accept as a mother. Many times I found myself praying for God to take this battle off of her hands and let me fight this fight. I am her mom and I was put on earth to protect her, I needed to fix this for her, afterall that is what Mom’s do. I can now say that I get it…I know why God didn’t allow me to fight this fight or fix this hurt. It is because HE knew that my littl girl would touch far more lives than I ever could. So many times people have told me how much of an inspiration she is to them and how differently they look at life now because of her journey. All I can do is shake my head in agreement because I too have learned a new way of life because of her. As a parent you are supposed to teach your children about life lessons but that is not the case….Bailey has taught me more about life, love, patience, trust and most importantly FAITH. My faith in God is one thing, but the faith of my little girl is so much greater than I could have ever hoped for.

I never thought in a million years that at 28 years old I would have to deal with such a hardship but then I think to myself how would I have dealt with this at the age of 8. Cannot say for sure that I would have handled it like she does, taking each day as it comes. No matter what is thrown her way she always has a smile and never complains about much. She has never once questioned why this happened to her because she understands that everyone has struggles in life and this was the one she is faced with. I will always remember when she was getting her chemo treatments at Tulane and she would hear another child crying in pain, she would always pray for them at night. She could have had the worse day ever and she would still be concerned about someone else’s well being. That’s just Bailey.

So today I want you all to know how proud I am of her. Words cannot express the joy in my life because of this little girl. Never would I have thought that one little person could bring me such happiness but I will be the first to say my cup runneth over! She is such a special little girl. I know that God has alot in store for her and HE is watching over her every step of the way. I am very thankful to say that although 1 year ago we were told that she had a 30% chance of surviving and that she would never walk again, but she beat the odds. Not only is she still here causing her mommie more chaos then ever but she is well on her way to walking. Never underestimate the strength of hope and the determination of a little girl with a purpose and a heart full of faith!

My little girl

Monday, February 14th, 2011….Happy Valentine’s Day!!!

Just wanted to say Happy Valentine’s Day to everyone!  Hope everyone is enjoying their day!

So as some of you may know we flew home on Thursday after receiving the best news :) ALL of Bailey’s scans were showing clear!!!! My little girl is still 100% No Evidence of Disease which is such a wonderful feeling for us! It is so hard to believe that in a few short weeks it will be 1 year since our lives were so drastically changed. I must say that although it has been a very tough year, it has also been a year full of wonderful blessings and life memories.

With that being said, we are home for 6 weeks!!! This will be the longest stay at home that we have gotten in the past year. I keep telling Bailey that we are not going to be vacationing at home anymore, we are actually going to live there again! During our stay at home we are still going to have lots of things to keep us busy but at least we are home. Bailey is going to go to school, mommie to work and Mimi in between all of our crazy schedules! Bailey will continue with physical therapy as she is making great progress. Before we left for this last treatment she was not only taking steps on the parallel bars but she had also started using the walker. The walker is much harder for her because she has to move it as she walks but she is doing fantastic! The determination of that little girl never ceases to amaze me.

Thanks again for all of your prayers and support emotionally and financially! I cannot say thank you enough. I will keep you updated during our time at home!

Monday, February 7th…2011

So it has been a little while since I have posted. As some of you know Bailey’s benefit on January 15th was a HUGE success. We had a great day and lots of support! It is so overwhelming when so many people come together in support of my little girl…it somehow always takes my breath away to know so many people truly care so deeply about her.

On another note we arrive in NY last weekend and have undergone round four of the 3f8 anitbody. As usual this was a rough week for Bailey but she pulled through it like always. We had little bit of issues with the injections that she gets dailybefore the antibody. For some reason it caused welps on her legs (which is nothing unusual with this type of injection), but then again if that is the only issues we have I will take that anyday! Thankfully we did not have the issues with her oxygen levels this round which was a blessing in itself! The treatment was just as painful as it always is, but my little prayer warrior simply asked for prayers when it got really bad and made it through just the same. One day during treatment she asked myself and Mimi to say a prayer and so we did. When we were finished praying, she looked at us and said ” I know you said a prayer because I can feel the prayer telling me it will be ok Bailey, you will be ok.” Nothing like the faith of my little girl to make her mommie proud!

After the week of anitbody we rested at the Ronald McDonald house for the weekend. The weather has been yucky to say the least. When we arrived there was snow everywhere and it was freezing cold! Not much has changed during our stay except the snow is melting causing slush everywhere! We are so ready to get home to the south.

This week we are doing scans to see if there is any new activity. This is a time of anxious waiting although I do not expect anything but clear results! We have done the CT scan already this morning and that report came back as clear. Tomorrow we do MIBG scan then Bone Marrow aspirations, followed up by MRI on Wednesday. I will keep you all updated as to what the results are!

Thanks again for all the prayers! Nothing helps us more than the support and prayers from everyone around the world.