Well today marks one week that we have been home and we have enjoyed every minute of it. We were able to come home last Monday night at 11:30pm and made our arrival at home at 2:30am! This week at home has been full of visits from family and friends. This past weekend was full of shopping, movies and a make over at Sephora! Bailey has been on cloud nine and couldn’t be any happier!
On another note, Bailey was scanned before we left last Monday to see how much progress the chemotherapy has made. The scans showed that the tumor is definitely still shrinking but unfortunately not in the places that will make it easy to remove. At this point it is very important to remove as much if not all of the tumor as possible. On Wednesday afternoon Bailey’s doctor called me with some disappointing news that we were not hoping for. She informed me that because the tumor is still so tightly intertwined in Bailey’s spinal cord, the surgeons at Tulane would not be able to operate. They feel as though it would be too risky of a surgery and could cause more damage because they are not sure they would be able to remove the parts that need to come out. She did however, inform me that she knew a surgeon in ST. Louis that specializes in surgeries like the one Bailey needs. So as she was telling me about this surgeon we decided that he should take a look at Bailey’s scans to see if there was anything he could possibly do. So off her scans went with a prayer in hopes that good news would find its way to our miracle for Bailey.
Sure enough on Friday I got the phone call that I had been praying for. Dr. Warner at St.Louis childrens hospital confirmed with Dr.Kanter, Bailey’s oncologist, that he is sure that he will be able to perform the surgery to remove this tumor from her body. Dr. Kanter assured me that he is a great surgeon that takes no unneccessary risks. With that being said it looks as if we will be leaving on July 5th to make our way to St.Louis. We will get the final arrangements on Wednesday once the doctors conference a little more about all the risks, progress, etc. that Bailey has and will have to face, but as of right now that is the plan. We would leave on the 5th, check in on the 6th and surgery would be on the 7th. It is will great hope that all of the tumor will be able to be removed which will help the next two rounds of chemo and the six weeks of radiation to be much more effective. Because most of the tumor appears to be “dead tumor”, meaning a non-growing tumor, it is very important that it be removed. This will relieve the remaining pressure on Bailey’s spine as well as ensure that all possible living cancer cells will be effected by the remaining treatments.
I am so very very thankful and hopeful that God is coming through once again to show that HE is bigger than all of this. In the hard times that we must face, our faith becomes a vital part of the “process” we must go through. It is what will carry us through and teach us to lean on God to reveal the bigger picture that is already in place. When your daughter’s life rest in the hands of humans it becomes that much more important to trust in God to direct the path. He has carried us so far on our journey and I know He will not leave us now. I ask each of you to pray with me to continue to trust in HIM even when it’s not the easiest thing to do. In my heart I know HE never leaves my little girl. He holds her in the palm of His hands each and everyday. Her progress speaks for itself. We are so very blessed and humbled by what HE has already done. Thanks for the prayers and please keep praying. These next few months will be hard but I know the end of this journey is closer than ever.
As I write tonight my heart is so full of joy and happiness. Bailey had a great week after such a rough week last week. She took more steps during her physical therapy sessions this week which made us so very proud! She is so determined to walk again and it is so amazing to watch her conquer another milestone in her journey. There is nothing like watching your child learn to walk…I am just blessed that I get to feel that wonderful feeling not once but twice in my life! I must say for some reason the second time is just as great if not better than the first. I am so proud of how much my little girl has accomplished. She is such an inspiration to me and a constant reminder of how blessed my life is. I thank God everyday for blessing me with her.
This week Bailey had so much fun. For starters her favorite little friend, Avery, was in for her chemotherapy treatments so Bailey got to spend lots of time with her. Avery is almost two and adores Bailey. From early in the morning to late in the evening you can hear Avery calling Bailey’s name and there is nothing like watching the smile on Bailey’s face when she hears her. Bailey takes Avery for rides on her wheelchair and Avery waves and blows kisses while doing so. It is the cutest thing you have ever seen. This week Bailey and Avery did nails and Bailey bought her a new princess dress and crown, which Avery proudly wore everyday. Bailey also had another visitor, Airelle, who came to spend the day with her on Thursday. This was another great highlight of her week. She was so excited to spend time with her other Tulane friend. They went for walk, took a nap or two and just spent some quality time together. I was so happy that Airelle took time out of her schedule to come and spend the day with Bailey. Her week was really special.
On another note, Bailey’s blood counts are taking their time coming back up this round which is why we are still here at the hospital. She has received several blood transfusions as well as platelet transfusions this past week. Due to her low counts her energy level has been a little low. She stays tired and takes lots and lots of naps during the day. Of course when she is up she is ready to go wheeling around and visiting everyone while she can. We are hoping they will come back up this next week so we can get some time at home. She will start round six of chemotherapy the first week of July. We will also be scanning her the next time we come in to see how much the tumor has shrunk and we are hoping it will be small enough to remove.
Please continue to pray for her complete healing. I am very thankful for all God has done for us and how he faithfully keeps His hand on her throughout this journey. As I watch her mature and grow up from this life experience, I am so amazed at how much her faith in prayer has grown at such a young age. There is nothing more rewarding than watching your 7 year old pray to God and watching those prayers come true! I firmly believe the best is yet to come for her…
Today is definitely a day to mark on our calendar of progress…after almost four months of not being able to walk, Bailey did what was told to us was the impossible…SHE WALKED!!! It was the most amazing thing to watch…if I could only express to you all the pride I felt as she took those steps…it is definitely a moment I will never ever forget. As I sit and watch my little girl struggle each and everyday to overcome this disease, days like these are the ones we are living for.
As physical therapy began Bailey was being her normal self and giving her therapist some grief about standing. As she began her negotiations of how many times she would have to stand today, her therapist was not budging and thankfully so. They agreed that Bailey would stand three times today. As we put her in the chair, Bailey just turned around and looked at me and said “Mom I think I will just try to take some steps today and just get it over with.” As everyone in the room watched with the highest of hopes, she did just what she said she was going to. She stood with the help of her therapist and began moving her legs one at a time and then began saying ” I’m doing it, I’m doing it…I’m walking”. It was definitely a moment that none of us in this room will ever forget. Needless to say word traveled pretty quickly down the halls as some of the nurses began shouting “Bailey is walking…she is really walking”. As everyone came in her room to congratulate her the happiness that was beaming from her was very contagious.
As another milestone in her long journey has been reached, I cannot help but to be overwhelmed with thankfulness and gratitude to God for allowing her to come so far. HE is a big God and everyday we are reminded of how far He has brought us. Thanks for all the prayers as we continue on this journey. We are really very blessed!
Thankfully after a pretty rough week things are starting to get better for Bailey. She is not throwing up anymore and is actually able to start eating a little more. She has been having daily cravings for Raising Cane’s chicken so as you might have already guessed that is what she has been getting! It is very hard to watch your little one have to go through so much pain although you know that what is causing this pain is helping to cure her of this dreaded disease. I am very thankful and blessed that she handles this sickness as well as she does. On the other hand, being my only child led me to spoiling her from day one and this of course is not helping that situation although I will admit that I am loving every minute of it as I always have. Nothing more rewarding than seeing her face light up.
On another note, Bailey’s oncologist has recommended that we stay in New Orleans for the radiation instead of going home for the treatment. I must say that I do agree with her. She will undergo two more rounds of chemotherapy and then the radiation will begin. It is so amazing to know that in only 3-1/2 short months this will be over and life will go back to normal for her. This will only be a smart part of a great life that God has in store for her. As always I am very thankful for all the support and prayers.`
After a very fun and family filled week at home, we returned to Tulane on Friday, June 4th, to begin round 5 of chemotherapy. Bailey was in very good spirits as was very ready to start the next step of this healing process. The minute we arrived she and Mimi headed upstairs to tell all of her nurses hello and to go play in the playroom. I was left downstairs to do all of the fun admitting paperwork!
Friday night began the start of round 5. She did fine through the night and all day Saturday. Yesterday evening the effects started taking their toll. Her doctor did tell us this round would make Bailey alot more pukier and she was right. Unfortunately the medicine Bailey is getting for nausea helps only temporarily then the sickness takes over once again. This is a new type of chemotherapy, one that she has never received before, so hopefully these side effects are signs that the bad cells in her body are being just as affected as Bailey is.
The new plan that Dr.Kanter, her oncologist, has decided on now that the bone marrow transplant is no longer an option, is for Bailey to receive an extra round of chemotherapy and then she will follow up with six weeks of radiation. Basically this means that Bailey will receive two more round of chemo after this one then we will be allowed to go home for her radiation therapy. The radiation she will receive will be everyday for six weeks. Dr.Kanter is still planning on scanning Bailey before round six of chemotherapy begins to see if the tumor will be at an operable size. Her hopes are that it will be and Bailey can undergo the surgery to remove it.
Please continue praying for Bailey…not only for complete healing but also for her body to somehow find a way to handle these side effects. As always she is being so brave and never complains about any of it. Her attitude everyday reminds me that I have no reason to complain about little petty things and for this I am very grateful. We have all learned to have a different outlook on life because of Bailey’s journey. God has a way of doing things like that. Thanks again for all the prayers and support…these things have made her journey that much easier for us.
My Little Inspiration
Sometimes its hard to understand the how’s or why’s…we just have to go with there must be something better and trust God to take care of the rest. Friday morning did not bring the news we were hoping for so Bailey had to undergo surgery in an effort to collect the stem cells that we have been so patiently waiting on. She made it through surgery fine and the doctors were very convinced that they were able to collect all the stem cells needed for her bone marrow transplant. Bailey was very sore for the remainder of Friday and into Saturday morning. She did however perk up when her doctor told us that we could go home on Saturday afternoon and we didn’t have to return for the next treatment of chemotherapy until Friday, June 4th. That was very good news and a great start to our weekend.
Although we did have some great news and got to come home, her doctor also had some disappointing news as well. The preliminary test showed that there were not enough of the particular type of stem cells needed to do the bone marrow transplant. It seems as if Bailey’s body is not producing the cells that are needed so unfortunately there will be no bone marrow transplant. I also asked about the possibility of finding a donor match but because of the risk of Bailey’s body rejecting the donor cells at this point, would be too risky.With that being said her doctor is exploring other options that can be just as effective.
It would be very easy to allow myself to question God or even be angry with God for this set back…but the way I see it is that HE must have something better in mind for Bailey. Something greater than the best doctor in the world could offer. I know He sees the pain and suffering my little girl is going through and I know it is not unnoticed. I also firmly believe that He will never give us more than we can handle. I just pray that He will reveal the greater plan for Bailey and we will trust Him to come through as He has so many times before…afterall miracles happen everyday!