Tuesday, March 30th…10:52pm

Today Bailey accomplished a huge milestone on her journey to recovery. During her physical therapy session today, she stood on her own two feet for the first time since surgery on March 1st. I couldn’t have been any happier! Her feet were a little wobbly and her legs a little unsteady, but with some assistance she did it!!! She has a little anxiety, as anyone in her situation would, but she put her mind to it and did what we were told she may never be able to do again. This was definitely a very big deal for her as well as everyone else in the room…I think every doctor and nurse who have gotten to know her during our stay here came in to hear the great news. Just another one of God’s many miracles! When men tell you it is impossible God will prove that anything is possible…you just have to believe!

We had a really good day today. Bailey was in great spirits and was feeling up to her usual self today. Our day consisted of movies, finishing a Highlight magazine, reading Junie B. Jones and going play rockband in the playroom at the hospital. She did get sick one time during the day but it didn’t get her down. Her bravery and determination never ceases to amaze me.

I am so proud and blessed to have such a strong little girl. I look at her with amazement in a new found way, each and every day. Although this cancer has changed our lives in so many ways, I can’t help but be thankful for all the good things that have come out of this situation as well. I find myself cherishing the small moments so much more than I used to. It’s hard to notice those moments when you are caught up in the busyness of everday life, but when you forced to face a reality you never dreamed would happen, you notice them. She is so young yet so mature…I am now seeing life in a whole new way and I can’t help but to be thankful instead of resentful. I know there is a purpose for our journey, and even though we don’t understand it now, we are taking each experience as it comes and learning as much as we can from it.

Thanks again for your dedicated prayers and words of encouragement. It helps to know we are not alone and have so many people at our side. God is a faithful God and He will come through…maybe not right now, but in due time.

Monday, March 29th….10:27pm

Well today marks the last day of chemotherapy round two, and I couldn’t be more thankful. This time was harder than the first on Bailey. This morning started out much better than the past few mornings, but by early afternoon the chemotherapy was at work making her body sick again. Although she never complains about feeling bad it is written all over her little face. How it breaks my heart to see her in pain knowing that I cannot take this pain away. The maternal instinct gets the best of me at times and I have to remind myself that I am not in control and have to put my faith and trust in The One who can make this better for her and heal her little body. I know HE is able and I am firmly believing that HE will intercede.

Tomorrow Bailey will be completely off of the chemotherapy and will hopefully get to get out of her room for a little while for some fresh air. Physical therapy went well today even though Bailey was not in the mood to be messed with. The physical therapist was very pleased with how much movement and strength Bailey has. Hopefully tomorrow will be a better day for her and we will get one step closer to getting her up on her feet.

Thanks for the prayers and support. I will let you all know how our night goes as well as our physical therapy session!

Sunday, March 28th…..10:18pm

Today started out a little rough as the chemotherapy started making Bailey very sick early this morning and continued for most of the day. She ran fever pretty much all day but it did eventually go down this afternoon. It seems that what the doctors thought was a little cold turned out to be a virus, and her body is fighting very hard to cope with this as well as the chemotherapy treatments all at once. She is so brave and copes with so much….

She has been sleeping alot these past few days because her little body is so tired. Although she has been tired, we did get in a few games of cards and some drawing of pictures this afternoon. We have also been watching movies, one of her favorite things to do. Please continue to pray as the chemotherapy treatments will not end until late Monday night. This second round has been a little harder on her body than the first but she is still fighting with every ounce in her being and most importantly, she is still smiling. I will keep you all updated as she will start intense physical therapy tomorrow. The goal is to try to get her standing on her legs by the time we go home! Her doctor is very encouraged with how much movement and sensation she has in her legs, so we will go full speed ahead to working her little legs to the fullest. This will be very hard on her body with all the other things she is having to deal with, but if you know Bailey she has determination and stubborness that is out of this world. She wants to walk again so there is no doubt in my mind that she will not accomplish the task they are placing before her….it is how she is made.

Thanks again for all the support…we appreciate you all more than you will ever know!

Saturday, March 27th…11:33pm

After such a great day yesterday I was hoping for another one to follow, but that was not the case today…Bailey slept most of the day as the chemo is making her very tired. She was also running a low grade fever which ended up spiking tonight to 102.3, so needless to say today was a little rough for her. Although she ran fever and wasn’t feeling that great, she was not throwing up so we were very thankful for that.

We did however, find out that our stay which we thought would come to an end on Monday will be extended for about two weeks. Her oncologist wants to be sure that this little cold Bailey seems to have come down with stays under control. Also she will have to undergo a surgery about a week after this chemo treatment ends to put a cathedar into her side which will help to remove fresh blood which will be used to harvest stem cells that will be needed later on during the ongoing chemo treatment. Once the new stem cells are produced, Bailey will have to receive these new stem cells in order to help her body rescue itself from the effects of chemo. This is a routine procedure during chemotherapy treatments, but at the end of the day it is another surgery for her to recover from.

Please continue praying for her as this is another stepping stone on her journey to recovery. Pray that God gives her little body the strength it needs to fight this cancer to its fullest. She is such a brave little girl…rarely does she complain and we can always be sure to get more than a few smiles out of her no matter how badly she may be feeling. She has such determination to get better. Thanks again for supporting us on our journey and for agreeing in prayer with us as I know this is the only way to conquer this terrible disease.

Friday, March 26th….7:49pm

I simply had to write this post early tonight because we just received the best news….but before I get to the most encouraging news ever, I’d like to share the events of our day.  We left Rayne at 8:15 am on route back to Tulane Hospital in New Orleans for Bailey’s second round of chemotherapy.  We left with mixed feelings – somewhat happy… somewhat sad….not knowing what today had in store for us.   We arrived at Tulane around 11am (after a breakfast stop at Sonic to make Bailey happy). Our first stop was a clinic visit to check Bailey’s blood counts to make sure she was able for round 2 of chemo. The blood results were okay, so we were admitted to her old room. Bailey also had another CT scan done to determine the effects of round 1 of chemo ………and because we have all been praying so hard and because GOD is amazing – Bailey’s tumor has shrunk by one third of its original size!!!!!!

We couldn’t be happier!!!! I knew when the doctors told us not to expect big results that GOD had other plans once again. Her oncologist is overjoyed with the news, as this is not typical with only one round of chemo. With this, Bailey is scheduled to begin round 2 of chemo tonight.  Unfortunately, her body is not hydrated enough so we are waiting for that to happen. Once she is hydrated, round 2 will begin and hopefully end on Monday night. If all goes as well as round 1, we should be able to leave here on Monday night or Tuesday morning to enjoy some more time at home.

Please continue to pray with/for us. God is showing everyone that HE not only hears our prayers but answers them. He is a BIG God, much bigger than any cancer or disease. I am believing for big results from round 2!!! Thanks again for the prayers!  Hope to have more good news to share soon……………

Thursday, March 25th….10:18pm

So today is a bittersweet day for us….it was our last day home after a week of enjoying the company of our family and friends that we have missed so much over the past three weeks, but we know that tomorrow is one step closer to winning this battle even though it was a day we were hoping wouldn’t come so soon. We are heading back to Tulane tomorrow morning to begin round 2 of chemo. I want to ask each of you to pray that this round will go as smoothly as round 1 so that we can return home in time for Easter. I know that God hears the desires of our hearts and it is my sincere desire that Bailey does not miss this holiday with our family. We have a big family and holidays are a huge deal for us so we are praying that this cancer will not interupt our holiday routine.

Today we spent our last day in the company of family and friends, as we did every other day since we returned home. Bailey was feeling very good today and was able to attend the rosary that RCE holds for her every Thursday at 3:15pm. It was a beautiful day which allowed us to go for several walks(one of Bailey’s favorite things to do) throughout the day. We even made our way to Glamour Closet and did some shopping!!!

As we continue this journey, I am so thankful to have everyone of you on our side praying and believing with us. This could be a very scary journey for us, but knowing how many people are praying and how great God has already been to us, we know that even better things are in store. My faith is very strong that God will come through and give complete healing to Bailey regardless of what stumbles in the road we may face. HE is a good God and we are believing and trusting HIM to overpower this disease. Thanks again for all the prayers and please keep them coming. I am also believing for GREAT results from the scans that were done before we came home. As soon as I know something I will be sure to update and fill you in.

Wednesday, March 24th….10:19pm

Well I first start off by saying …There is no place like home!!!!! We are so glad we’ve had a week at home and although it passed so quickly we thoroughly enjoyed each and every day. I must apologize I have not updated since last week…let’s just say our trip home started a little rough but nothing we couldn’t handle.

I will back up to the Friday we got to finally come home…we decided to tell Bailey we were coming home despite the fact she had an EKG scheduled before we left in addition to the normal routine medicines and all that good stuff. So that morning we starting packing up her room (which thanks to many of you was like packing a small apartment…LOL), but we were pretty much finished up by noon.  Once we finished packing it was time to do the EKG, which went very well and gave us some good news to go home with. According to her cardiologist, the tumor is not pressing on her heart as much as it had been on week 1 of our stay at Tulane  (when the first EKG was done), so that made us very happy to say the least.  He did not speculate as to how much the chemo had effected the tumor around her heart because he still had to compare the two but the fact that it had not grown and was visibly smaller was music to our ears.

After the EKG, we headed back to Bailey’s room to wait for our discharge papers. While in the room as I was putting Bailey back into her hospital bed I noticed the incision on her back from surgery had opened. I immediately called her nurse who then called the neurosurgeons to come and take a look.  At that point they were unsure IF we would be allowed to go home due to the severity of the open wound. Needless to say we were a little disappointed but began praying that somehow God would figure this one out for us…and sure enough HE did. The neurosurgeon decided he would teach us how to properly care for the incision (which I might add is not an easy task for us or a painless task for Bailey) so we could go home.   We were all ready to go, with our two page long list of medicines, injections, wound care instructions, etc.

Of course our ride home seemed to take forever only because anticipation will do that to you. As we were pulling off the interstate in Rayne, Bailey began crying as she was so happy to be home. Needless to say when we pulled into our driveway we were met by all of our family members and a collage of posters, balloons, and messages from our family and friends. It was truly the best homecoming ever! We settled in and no sooner than an hour after we were home, I was picking Bailey up to get into bed and pulled my back out!!! So now you understand why I haven’t been updating as much. With our new home routine, and me not being able to walk, needless to say the first few days home were a little rough for everyone. Thankfully I have great family to help, sleepover, cook and wash clothes, etc. etc. Also I was paid a visit by the most awesome chiropractor ever, Jason Abshire, he is definitley a God send(literally). Not only did he fix my back but he also had a message for me that I wan’t expecting that helped me put some things into perspective. I have been dealing with emotions I am sure every parent in my situation deals with but somehow God had given this man a message which was meant just for me to put my mind at ease and I am so very thankful HE did. Amazing how God does things sometimes.

So for all of you who have been wondering how our days at home have been spent, I will fill you in. We have had a crawfish boil, strolls outside, an abundance of visitors, a trip to Bailey’s school to visit her classmates and a whole bunch of quality time that was much needed. I am so very thankful for each of you who have made this transition in our lives easier by doing the little things…a kind word, a care package, a cooked dinner, etc. I am so overwhelmed not only by your generosity but by your sincere care and love for my daughter. I could never say thank you enough. You really have made our lives alot easier.

Tomorrow Bailey has her first physical therapy appointment at Women’s and Childrens, so please pray this will go very smoothly for her. She is a bit nervous as this will be a whole new set of faces and routines she will have to get used to.  Also, it will be our last day home because we are headed back to Tulane on Friday for round 2 of chemo. I appreciate all the prayers and ask that you keep them coming. Believe with me that round 2 will go as good as round 1 did so that we can come home on Monday when chemo is finished. Thanks again for everything and for caring about my little girl like you do. I am forever grateful! And I promise I will update as much as I did before now I can MOVE!!!! Thanks again Jason……..

Thursday, March 18th….11:17pm

Life's Happiness

It is with a very happy heart and a HUGE smile on face that I write this post tonight…we are going home tomorrow!!!! Bailey’s oncologist gave us the ok to take her home for a week until her next chemo treatment starts, which will be during March 26th-29th. This was truly a great day! I have been praying for this and I knew God would deliver (although I think he was teaching me patience as this is not a virtue that I possess…LOL).

Bailey completed the second part of the scan today, so now we wait for the results to see what is going on with the tumor since round 1 of chemo. During our week at home we will only have to take her to physical therapy, so needless to say we will all get some much needed time at home to do fun things and visits with our family and friends. We will still have to be very cautious that everything is disinfected and anyone that is sick stays at a distance, but we can definitely handle that little task after three weeks of what we have just been through.

Today was not only a good day because we got such great news about being able to go home, but also because today was patient/doctor swap day for the kids. Bailey had so much fun being able to give all of her doctors and nurses their medicine (V8 juice) in a syringe. Needless to say it was great to see her little face light up when the doctors had a dislike for the medicine she was giving them. She was very pleased to give them a dose of their own medicine, so to speak. She had special sizes for each of them…some got off easy with small doses and some got the biggest syringe they make. She also got to listen to their heartbeats and hand out stickers for her “patients” that followed her orders. It was really a day full of laughs for not only Bailey but also Mimi, Coby and myself as these three weeks did not allow us many opportunities to enjoy laughter like we used to. It was great to see her having so much fun. I have several pictures that I will post tomorrow from our day of fun (aka the day before we get to go home…YAY!!!)

So as always thank you thank you thank you for all the prayers as I know God is listening! Your support and love for Bailey is so overwhelming, but I am eternally grateful to you all. I know we have a long road ahead but days like these reminds me of why and how hard we must fight….her laughter is something I will never get tired of hearing. She is truly the happiness in my life! Thanks again and please continue to agree with me in prayer that this journey, although hard and sometimes tiresome, shall pass quickly and Bailey’s health will be restored better than it was before. We have many days to fill with her laughter….

Wednesday, March 17th…..10:37pm

Happy ST.Patricks Day to all…Bailey had a very good day today for sure and she doesn’t even know it yet! Her oncologist informed us today that there is a possibility that we will get to go home sooner than the 27th as we were previously told. Her next chemo treatment will start on March 26th and end on March 29th, so if Bailey stays fever free they may let us out of here within the next week so we can return on the 26th!!!! I have not told her yet because I don’t want to get her hopes us and then something happen to let her down, so I am waiting until they tell us to get in the car and go…then we will hit the door running for sure! (But of course I will take the time to let you all know so you can celebrate with us)

Today Bailey had to do the scan that I was asking everyone to pray for and I will need to ask you to continue praying as she will have to do part#2 to the scan tomorrow. I didn’t realize that it was a comprehensive scan that would take two days to complete. The oncologist says that we will get the results in about 3- 5 days. It is a nuclear test so she is having to take a series of medicines throughout the day that are very nasty according to her. Once this last scan is done that will be it until after her second chemo treatment. Also if after her second chemo treatment there are no complications (such as fever, infections, etc.), we should be able to go home immediately without a required hospital stay. This is definitely something we have been looking forward to. Also I wanted to let you all know that Bailey’s hair bag is about 3/4 full and that girl still has alot of hair left on her little head. I didn’t realize just how thick her hair was…OMG!!!! But this is a good thing as she is able to keep her hair a little longer than expected!

Thanks again for all of the prayers and support as this is a big part of what helps us face each day with faith and courage. Each and everyone of you are appreciated more than you will ever know.