Well this week was definitely a good week for Bailey. After several blood and platelet transfusions she is feeling much better and has so much more energy. She has been spending alot of time in the playroom as well as roaming the halls. She has been busy playing clue, sorry, mancala and also making sand art. Since her friend, Airelle, has left the staff is really making an effort to keep her occupied. She has been very busy and has playtime with nurses as well as doctors. Yesterday was zoo mobile in the playroom and she got to see a hedgehog, a chinchilla and a parrot. So needless to say there is always some type of fun waiting for her to get into.
The doctors are going to try to collect her stem cells through her line tomorrow if her counts come up and if not she will have to go through surgery. The surgery will require them to stick needles directly into her hip bones where they will retrieve the cells that are produced in the bone. The doctors are really hoping the new medication she was put on will help her counts multiply dramatically by morning, as this is our last day to wait for them to come up.
If all goes well with the stem cell collection we should be able to go home sometime this weekend. Her next round of chemotherapy is due to start on Wednesday, June 2nd. She is really looking forward to going home for a few days. Please continue to pray with me that God will multiply her counts and spare her from yet another surgery. I know His hand is always on my little girl and for this I am so very thankful. He is bigger than all of this and has provided so many blessing for us along the way. I can only ask that you believe and pray with me throughout the rest of our journey. Thanks again for all the support.
Oh I almost forgot to mention…she stood up twice for 45 seconds each this week!!!! Her best record yet!
Well I know I haven’t written in awhile and I must apologize, this has been a pretty busy week. Bailey had alot of goods days this week although the last two days were not so good. She had to receive another blood transfusion today. Last night we were up most of the night because she was throwing up and was running a very high fever. The fever lasted until early this afternoon. She is very tired and does not have much energy at all. Hopefully she will be feeling a little better tomorrow.
She has made a new friend, Arielle, this past week. They have been playing together in the hospital’s playroom as well as making frequent visits to each others room. It has done her alot of good to become such good friends with someone else that is also sick. Although her new friend is a little older than her you would never know. When Bailey is not feeling good or is just having one of those bad days, Arielle has always been there to make her smile. Today they went for a walk and even had a picnic in the lobby on the first floor. It was great to see Bailey having fun despite all the pain. Tonight they finished up their day of fun by setting up a few chairs in the hall and watching a movie. We pulled a cart with a tv and dvd player and they shared popcorn, cookies, candy and coke! They really had alot of fun. Tomorrow is Arielle’s last day as she will be going home but has promised Bailey to come back soon to visit her.
It is so amazing to see how God knows exactly what we need and when we need it. Bailey has been so strong and brave through this all but somehow God knew she needed a friend and he sent Arielle. I am so very thankful for all the blessings big and small. I know He will continue to watch over my little girl and provide for all her needs. Thanks for all the prayers and please continue to pray as we continue on our journey.
I am happy to write that after a very rough weekend Bailey is feeling much better today. The side effects are still there although not as bad as they were this past weekend. She is finally getting some much needed relief and rest. This round of chemotherapy has made her very tired, which is to be expected but she still somehow finds a little energy to have a little fun. This morning she wanted to go to the playroom and so we did. It was good to see her smiling and having fun after a rough weekend. She did not stay very long but it was refreshing to watch all the same. Her favorite passtime in the playroom is playing Rockband on the Wii. Bailey, Mimi and I are quite the band…LOL!
As I type I am thinking wow…we are already halfway through May – where does the time go! Time is really going by so quickly. I am so very thankful that we have had so much success through this point of Bailey’s journey. Not so long ago we were faced with an unknown future that was so scary and now I look back and think …God really is amazing. When things seems as if they are to hard to bear it is very comforting to know that we have a God that already has all the answers to our many questions…all we have to do is believe!
With the good days there are some bad days and unfortunately today was one of those bad days. The chemotherapy is really causing some nasty side effects on this round. Last night started the beginning of the rough day and unfortunately she has had no relief since. The good news is that chemotherapy round four will officially be finished tomorrow. I am praying that once this round is over her immune system will recooperate really fast so that the stem cells can be collected and her body can feel much better than it has been.
So hard to believe we are already almost complete with round four and are pretty much halfway through her treatments. So many things have changed in so little time but one thing remains…God is still God and He will always answer our prayers. Thanks for believing and praying with us!
The results from the scan show that the tumor is still shrinking. Although the changes were not as drastic as the first scan, the chemotherapy is still working and the tumor is not growing. Her oncologist wants the tumor to get a bit smaller before doing surgery, so hopefully after the next round of chemotherapy we can do the surgery. Round four of chemotherapy started last night and so far so good. Bailey has been feeling good and hasn’t been sick.
I have another little story to share with all of you. Of course you all know that Bailey still cannot walk although she is making alot of progress with standing. Well Bailey woke up this morning and informed me that she will walk again. She said that during the night, she dreamed that she was walking around the hospital pushing her IV pole around while she was getting her chemo treatment. So as she was telling Mimi and I this story she said we just need to keep praying because she just knows it will be soon!
It amazes me each and every day to watch my little girls faith grow. She is a strong believer in prayer (as we must pray every night before shots so that God takes some of the pain away), and I know that this faith will carry her through on this tough journey. As unfortunate as these circumstances are, I firmly believe that God has plans for Bailey. It is hard to have faith when you don’t understand the reasons why but afterall isn’t that why its called faith…
After enjoying some much needed time at home, we are back at Tulane. Our time at home was very nice and relaxing but we are back and ready for the next step in our journey. Upon arriving today, Bailey was sent for an echo test on her heart. This is a routine test that is done before each chemotherapy treatment to make sure her heart is strong enough and working properly. When the test was being done today, the lady who does the test gave us some very encouraging news. She informed me today was the first time, since she has been doing Bailey’s tests, that she was able to get all the pictures and views she needed. In the past the tumor has blocked these images but not today. With that being said you can understand why I say that is encouraging! I am believing that was God’s little hint to us about what to expect with the CT scan results we will be getting tomorrow.
Bailey did not start chemotherapy today because she needed a blood transfusion so it will begin first thing in the morning. She is still feeling very good and is still wearing that beautiful smile on her face. I am so very thanful for the few days we got to spend at home. God knew that she needed to be able to go home and relax for a bit before facing this next step in her journey. I truly believe that He is working a healing in her body. Faith and prayers go a long way and we have both! I will keep you all updated!
Happy Mother’s Day to all the wonderful mothers of precious little children big and small. I hope everyone is having as great of a Mother’s Day as we are. Bailey is feeling good and so very happy to be home. She has already gotten her request of boiled crawfish and snocones! This time at home is doing her some good. She was very anxious to get home to see the little kittens that our cats had while we were away. So needless to say we are enjoying every minute of the day!
Thanks again for all the prayers and supports! Praying for bigger and better results when we return…God is bigger than all of this!
Well there was no stem cell collection again today because her counts are still not coming up so…..WE GET TO GO HOME!!!! We will get to leave the hospital around 8pm tonight and will get to stay home until Wednesday. The doctors are not concerned about the stem cells because they will try to collect them again on the next round. We will also do a scan when we come back to see how much the tumor has shrunk.
Bailey is very excited that we get to go home. Her first request was ” Mom whats for supper cause I am thinking boiled crawfish.” Oh my little cajun girl!!!! I explained that since we are not getting on the road until 8pm it may be a little difficult to find crawfish at 11pm when we will be arriving home! She completely understood and extended her wish until tomorrow as long as I promised to go get her a snocone too! Oh the fun we are going to have while we are home.
Thanks again for all the prayers and please pray that we have infection free days while we are home. We definitely do not want to come back any sooner this time! Hope everyone has a great weekend! God is so very good!
So Bailey’s counts have decided to take their sweet time to multiply so unfortunately we were not able to proceed with the stem cell collection again today. We are praying that tomorrow will be the big day we have been waiting for! I am learning that none of the treatments and procedures ever go according to plan because every body is different. My poor little girl was so disappointed today when they told us we had to wait. She is so ready to go home and she knows that our trip home is not possible until the collection takes place.
Today she was a very sleepy little girl so she decided to take an extra long nap today. Naps are really good for her body to get the rest it needs so naptime is very welcomed. So while Bailey and Mimi napped, Mommie worked…LOL…go figure! After her nap she colored and went for her daily wheelchair ride around the hospital. We also noticed that her appetite was not there today and tonight revealed the reasoning for that. As she was sitting in bed watching tv she began vomitting for absolutely no reason. I am praying this is not a sign of any little infection that is lurking waiting to be known. This would definitely cause another setback for the stem cell collection. So far so good though, it only happened once and even though she still hasn’t had anything to eat she says she feels much better.
Please continue praying for her little body to recooperate. God will heal her as HE has always done…it is only a matter of time! Thanks again for all the support! I will let you know what happens tomorrow.