Well we are not home yet as we thought we would have been. Bailey was not eating or drinking at the beginning of last week which is what kept us here and as the week went on her counts started dropping drastically (which is to be expected) so our stay was extended. Despite the low counts she has been feeling great and has been full of energy. She makes several trips to the playroom as well as to her friends rooms to play games when they don’t feel up to getting out. She is quite the social butterfly of the pediatrics floor! I must say I love it…her smile and positive energy are very contagious and you can’t help but feel better just being around her.
Our week and weekend was filled with lots of transfusions and preliminary test requirements for Sloan Kettering in New York. Yesterday we did an MRI on her head and an Echo on her heart. We have also sent blood samples and urine samples and next week she will have another bone marrow aspiration which should complete the preliminary requirements for the study. I am still gathering lots of details about what our new treantment in New York will hold so as soon as I know I will fill you all in. I do know that our first trip there will be in approximately two to three weeks and we will be there for a week. During that week she will undergo lots of test then we will be sent home to wait on the results. Please say big prayers for us as we are praying that everything goes according to plan and she will get into the study immediately. This will play a big role in keeping her in remission.
Until then we will look forward to going home and getting to spend some much needed time with family and friends. Thanks again for all the prayers and support!
***Oh I forgot to mention that we will be having a blood drive in Rayne soon (end of August) to benefit Bailey. I will be sure to post all the information on here so we can get as much support as possible!
So today is the last day of chemo and thankfully Bailey has not been sick at all thanks to the new medicine that the doctors gave her this time. She has been feeling great and is still healing perfectly from surgery. We will probably get to go home sometime this week which makes Bailey very excited and Mommie very nervous. We have never been sent home this soon after chemo but because there is not another procedure to immediately follow this round of chemo home bound it is. I must say that I will probably be the over protective mother for about two weeks until her counts come up. During this time she will be very susceptible to catching colds, fevers and all the other things she definitely does not need, so if you plan to visit please bare with me as I may not let you in…LOL! She was excited about going home so soon until I told her no eating out at restaurants and no shopping until her counts come back up. My little girl has become quite the shopaholic on our trips home! Anyways I will keep you updated as to when we get to leave!
I created a video tribute to Bailey’s journey. Please click on “Bailey’s Journey” below to view. Hope you all enjoy and thanks again for your continued prayers and support!
Well as you all know surgery was a great success and Bailey is officially tumor free!!! After surgery, Bailey was in ICU until Saturday afternoon, then was moved into a regular room. In typical Bailey fashion she bounced back in no time. The day of surgery she was asking to eat Chic Fil A and the day after surgery wanted to get in her wheelchair to go rolling around. OF course we had to convince her it was a good idea to take things slow considering the major operation she had just gone through. She came out of surgery with a chest tube but it was removed on Saturday before she was moved into her regular room.
During this week, the bandages from her incision were removed and everything is healing perfectly. She will now have a new scar under on her right side that goes from under her arm to almost mid-way on her back. Although the incision is still healing in no way is this healing process slowing her down. She has been getting in her wheelchair, making trips to child life to play and also visiting other patient rooms to encourage them to get out of bed to come and play with her. She really is a little social butterfly! Along with all of these things she has me frequently making trips to Chic Fil A and Raising Canes. I am so thankful that she is processing this major milestone in her journey so well.
Last night began the first day of round 6 of chemotherapy. It was a very rough night as the side effects of the chemo took no time to begin working on her. We were up most of the night and which in turn caused her to sleep most of the day. I happy to report that although it was a rough night/morning, she is now up and making medical students play games with her. We are hoping this round will not make her so sick as the doctors are trying a medication to reverse the side effects and so far so good.
Thanks again to everyone for their continuous prayers and support. I know this has played a big part in making this journey so much easier for us. Please continue to pray as we are not at the end just yet. Her doctor is in the works of trying to get us into a New York hospital that offers a special drug for kids in Bailey’s condition to stay in remission. Not everyone is accepted into their study and as you can imagine this will be a costly part of her treatment. On the positive side Bailey is a perfect candidate and I will just trust God that a way will be made and everything will work itself out.
It is very evident each and everyday that God has big plans for Bailey and HIS work has only just begun. I can already see how much she has affected the lives of others and couldn’t be prouder. For only 7 years old she is so wise beyond her years. I know our life may never be as it was before but for that I am thankful. Never again will I take the little things for granted and I know without a doubt I am a better person and mother for having watched my little girl endure such a big journey. She truly is my inspiration.
Once again, it appears as if God has truly answered our prayers. I feel confident we will all look back at this time and know how truly blessed my little girl is and realize God has been in her corner through this entire process.
Bailey’s surgery finished about an hour ago and her surgeon feels very confident he was able to remove the entire tumor. He is rating the surgery a definite success! We are grateful for this wonderful news but are also being patient and hopeful as we know this is a huge step in her long journey to being cancer free! Unfortunately, Bailey will be sedated until tomorrow and will have to keep the breathing tube in but she has made it through this surgery and right now this is what counts!!
Thanks to everyone for the prayers! It seems as once again, God has heard and answered as only he can do! I will post additional details later but wanted to share this great news with all of you!
AFter the best two weeks at home, we are headed back to Tulane in the morning to prepare for Bailey’s big surgery on Wednesday. YES, I did say TULANE!!!! At the end of last week we received some very good news! The tumor board had a meeting regarding Bailey’s scans and there was a surgeon afterall that would perform the surgery at Tulane!!! So off we go tomorrow back to our home away from home with great hopes that God has something great in store. We couldn’t be any happier that she will be able to have the surgery at Tulane. We were prepared to make the trip to St.Louis if that is where God wanted us but as always HE knew the desires of my heart and made a way!
We have been so blessed these past two weeks. Bailey was able to attend her Nanny Kelli’s wedding where she was the most beautiful flower girl ever. (I will post pictures soon). My little girl kept me on the roads this trip home and I loved every minute of it. Today we even made it possible for her to go swimming. We taped up her lines on her chest and put on her bathing suit and across the street we went to Mimi’s house. Yesterday we made a trip to Academy where a big canoe like float was purchased and today it was used! It was so great to see my little girl doing one of her most favorite things in the world….she had the biggest smile on her face all day!
Days like today remind me of all the little things I used to take for granted. You never think something as simple as watching your child splash around in a pool would put such joy in your heart but let me tell you it did! I miss those days and cannot wait for our life as we knew it to pick up where we left off. I am so very thankful for how far she has come but cannot help to long for the days where she was healthy again. I know there are far more worse situations we could be in and because of that I will not complain, but I will continue to wait for the day we can have “normal” again.
Please continue to pray for Bailey as she undergoes such a big surgery. Pray that God gives guidance to the doctors as they remove this terrible tumor that has changed our lives forever. I know HE is able and HE already knows the outcome. I pray that HE will help her to have a speedy recovery as well as restore her complete health. Thank you for your support and prayers as we will need them now more than ever in the next few days.