March 27, 2012…..Another twist and turn

So as some of you may already know we are still home! Unfortunately I got a call from Sloan Kettering on Friday, March 16th telling me that Bailey’s counts were still not high enough for her to start the new trial. Of course this was a bit unexpected since our flights were scheduled to leave on Sunday and we were prepared to be in New York for about 2 months. Needless to say that Friday seemed to last forever…between cancelling flights, calling our home hospital to figure out the interm plan, talking with Dr.Basu from Sloan to hear her thoughts and opinions on what we should do for now until Bailey’s counts come up, etc. etc. etc….this momma was exhausted that is until I got home and told Bailey that we would get an additional 3-1/2 weeks at home…she was elated to say the least! This goes without saying that our time at home would not be all fun and games considering the interim plan including her getting low dose chemo at Tulane, but we were grateful all the same for the added time at home.

With that being said, Bailey did low dose chemo (irinotecan) at Tulane last week. It was done out patient which means mommie, Mimi and Bailey drove everyday back and forth to Tulane in New Orleans. It probably would have been much easier to stay in New Orleans but we all were determined to sleep in our own beds every night :) Bailey did absolutely amazing with her chemo. The Monday was a little tough on her because the chemo made her sick (as we had to pull over on the interstate three times so she didn’t throw up everywhere in the car) but everyday after that, with the right medicines thanks to her awesome oncologist Dr. Kanter, we were able to get the side effects at bay and she was able to have an easier week. We were very thankful the doctors chose a low dose chemo for her instead of high dose so that she is able to enjoy the extra time at home without alot of hospital visits and yucky sick days. She is definitely taking full advantage of her extra time at home and keeping us on our toes and on the road with all the places we must go before having to leave again. The energy my little girl has is beyond amazing!!!

So here we are again back to the waiting game. We are monitoring her counts and praying they continue recovering before the next trial opening gets here. The next trial date is scheduled for the week of April 16th so I have been asking God to make it possible for Bailey to be able to start on this date because the longer she goes without maintenance treatment the more chances we face of relapse (which is why she had low dose chemo in the interim in case some of you are wondering why they would give more chemo if we are waiting for her counts to come up)  . Of course we have to do a complete workup with scans, etc so we will have to head up to NY on the week of April 9th. I should get more information and more definites in the next week or so…until then please continue praying for high counts!

On another note we have had some prettty amazing things happening during our time at home! For starters Bailey’s teacher, Mrs. Habetz, along with the help of Mrs. Jennings and all of the third graders at RCE surprised us with a very generous donation toward our travel expenses to get Bailey back and forth to NY for treatments.  A few months back, Mrs. Habetz approached me with the idea of selling Bailey Prayer necklaces. The necklaces have two pearls and three charms which have a very special meaning. The purpose of these necklaces is that the children would pray for Bailey as they are making them and the person who purchases the necklaces would remember to pray for Bailey every time they put the necklace on. Her idea was to have the students make the necklaces as part of their stewardship hours for school and she would sell them and the proceeds would go towards travel expenses, medical expenses, etc. Let’s just say that a small project turned into ALOT of necklaces. Last week during school mass the entire third grade along with these two special teachers presented us with a donation of $5,000.oo!!!!!! To say that touched my heart is an understatement! The fact that two teachers, who are busy enough with their teaching responsibilites and have families of their own to tend to after hours, took the time to do this for our family is so amazing to me and I cannot say thank you enough…not only to them but to all the third graders who gave their time so selflessly to help their classmate! This is truly a blessing to our family!

The necklaces are still for sale for anyone that would like to purchase one…they are $15 and you can call RCE at 337-334-5657 to place an order or feel free to contact me and I will gladly assist!

As always I must say that we are so thankful for all of the blessings we receive…big and small! Our faith is big and NOTHING IS IMPOSSIBLE! We are still standing on faith that God will heal Bailey and she will be restored to full health and will live a long cancer free life! Until that day we will continue the fight and stop at nothing for a cure!

March 9, 2012… Two years

So it has taken me a little while to post…firstly becuase we are home as some of you may know so we are keeping busy and enjoying every minute and secondly because March 1st made 2 years since our journey began…needless to say it is a mix of emotions for me. Being home has been so refreshing! We really haven’t had much time at home over the past year so having 3-1/2 weeks feels like we are actually living in our house again and not just “visiting”. It will be so hard to leave next weekend knowing that we will be gone for awhile again but at least we are leaving somewhat renewed :)

Bailey has been feeling great! She is back at school with her friends and although she is not so excited about the schoolwork, I know she is really excited to have some normal back even if it’s just for a little while. We have been enjoying our time at home to the fullest. Of course we have gone to her favorite restaurants and have also had some much needed time with our family and friends. She has been running her momma crazy to say the least. If anyone thinks that by being home we are catching up on some relaxation…you are sadly mistaken! My little ball of energy is not ready to sit home by any means. She is constantly looking forward to the next place we are going and making plans if none are made. You would think she would be tired from all the treatments but it is quite the opposite! I will say that it is nice to have Cody’s help so Mimi and I can get little breaks here and there…my husband is definitely a God-send!!!

So as I mentioned this month made 2 years since Bailey was diagnosed. Ironically enough we happened to be at Women’s and Children’s getting a blood transfusion on March 1st…the same exact day and place two years ago when our lives so dramatically changed. As we were sitting in the hospital room, Bailey looked over at me and says “Mom it’s 2 years today”. Of course I knew exactly what she was talking about because from the moment my eyes opened that morning it was weighing on my mind, I just didn’t think she would remember….although how could you ever forget a date such as that. I know it may sound strange, but on that day I did feel a little sad as all the emotions of the past two years flooded over me ( I cried on and off like the entire way to work…and anyone that knows me, knows that I do not cry often), but mostly I felt happiness. Even though life has handed my little girl an unfair hand in life, I am happy that she is still here. She is not only here but still fighting like hell! She is most definitely the strongest, bravest, stubborn person I know…and I thank God each and every day for making her the person she is. I honestly do not know what I would do without her. She makes this journey look so easy…and believe me when I tell you this is NOT easy. She is my constant reminder that each day you are given is a blessing…enjoy the little things in life because those are the BIG things…tell the people you love each and every opportunity you get how much they mean to you…do things you have always dreamed of doing…let go of bitterness and find what makes you happy….but most importantly NEVER GIVE UP because NOTHING IS IMPOSSIBLE!

Thank you for following our long journey and for constantly praying for my little girl. Our journey is far from over but I know how far we have come and I know that it is only by God’s grace and the power of prayer. HE has a plan for my daughter and even though I have no earthly idea what is it, I have faith that she is doing exactly what she is meant to do. She is truly my hero!