Today was another good day for Bailey. She is still feeling good and her body is still fighting back. Although she has been feeling really good her counts were really low today and she started to become anemic so she did have to receive a blood transfusion this afternoon. She slept through the whole 4 hours of receiving it and was wide awake when it was finished.
It is so amazing to watch her bounce back after eveything that comes her way. No matter how tough or impossible things may seem, she fights her way through it. The plan is still to begin harvesting her stem cells on Monday. The doctor says her body looks like it is ready and judging by the way Bailey looks, there is no doubt she is ready. Tomorrow she will begin getting double doses of her nupogen shot that she receives every night. This medicine makes her body produce white blood cells that help her to recover from the affects of the chemotherapy. This process may be a little hard on her body because it lasts three days and will make her body work overtime to produce double the amount of white blood cells than what it normally produces. We are being told that when this happens her body may become very achy and sore.
Please continue to pray for her as she endures another treatment on her way to recovery. Thanks again for all the prayers!
Today was another great day. Bailey was in good spirits and was feeling good all day. The results from her kidney test can back and nothing showed as abnormal. We were very happy about that although the cause of her high blood pressure is still unknown. They will keep her on the medication to control it for now. We are still waiting on the thyroid results to come back. Hopefully everything will stay this way until Monday, when it is time to begin harvesting her stem cells. If all goes well with that process we should be going home next week for a few days.
After our long day of playing and doing physical therapy, Bailey said “Mommy can you just hold me so I can rest”…Of course I couldn’t resist this request. This was one of my favorite things to do when she was little. I could sit and hold her all night…and as time goes by some things never change. She is still my little girl even if she is growing up.
Please continue praying and as always thanks for all the support!
Well we had a great weekend this past weekend. Bailey was feeling great and still hasn’t gotten sick from this round of chemotherapy. We are so blessed to enjoy these sick free days. We were able to visit with family that came up to visit and play lots of games. Bailey also received a special gift from Kangaroo’s Pouch (her daycare since she was 2yrs old). They are a great group of people and they have spoiled my little girl over the years to say the least! Thanks again you guys, you really made her day. She has not put it down…not even to sleep!!!
Over the weekend Bailey did have to start on blood pressure medication due to her blood pressure being a little on the high side. As of now they are not sure if it is due to the amount of fluids she has to receive or if something is going on with her kidneys. She is going to have an ultrasound of her kidneys as well as test run on her thyroids to rule out any of those possibilities. Please pray that none of those are the causes as she does not need any added culprits to this situation. I will let you all know the results once we receive them – probably in a few days. Also she has developed a little uninary tract infection that is being treated with antibiotics so add that to the prayers as well!
Thanks again for all the prayers as I know this is what is making all the difference! God hears our prayers and answers them when we least expect it. He has already helped Bailey through so much and I know He is not finished with her yet.
Today we received some very encouraging news! The results from the bone marrow that was collected during Tuesday’s surgery came in today. The results showed no signs or traces of cancer in Bailey’s bones anymore. We are so very excited with these results. The chemotherapy is working shrinking the tumor like it should and of course I am very confident that the man upstairs is taking care of the rest. Her oncologist also told me that after the next round of chemo (which should be around May 12th) they will scan the tumor and if is it small enough to operate, they will attempt to remove the remaining tumor. If they find that it is still too complicated to remove, we will proceed with the fifth round of chemo and attempt to remove it then.
It is so hard to believe that we have already come so far on this journey. It seems like only yesterday that our world felt as if it were crumbling all around us. It is so amazing to know how many accomplishments were made despite all the “impossibles” set before us. I am so thankful for a faithful God who hears every prayers and knows every secret of your heart. Never in my life would I have thought that my little girl would ever have to face a situation as big and as tough as this, but I am very thankful that God gave me a strong and determined child. Somedays I look at her and think… wow she makes this all seems so easy. I am thankful that through it all she has never lost her smile. I know we still have a long way to go but I am very hopeful that the journey’s end is nearer than ever before. Thanks again for all the prayers…because I do believe that prayers carry us through.
Well I have another Bailey moment to share with you all…if you know my child and her complete honesty you will get a kick out of this. She has a favorite night nurse, Miss Amanda, that Bailey absolutely adores. We have become close to Miss Amanda because she has been a regular night nurse for Bailey since day one. Anyways, at night Bailey and Miss Amanda share lots of stories with each other. Well last nights story consisted of Miss Amanda telling Bailey that she has seen a surgery just like the one Bailey had. She was explaining to Bailey everything that happens and how sterile the environment must be in order to perform this type of surgery. As Miss Amanda was explaining all of these things she went into details about the type of outfit she had to put on. She was telling Bailey that you have to wear an outfit that has lead in it and how it weighs at least 20lbs and that after about 10 minutes she was feeling the weight of the outfit. She told Bailey that she was getting tired of watching because the outfit was so heavy and then Bailey proceeds to say “No Miss Amanda it’s because you are too skinny”. I thought I would crawl into the floor. Kids really do say the silliest things sometimes. Thankfully Miss Amanda is full aware of Bailey and her silly honesty, that she was not offended at all.
Besides all of the laughter of last night, it was a great start to our wonderful day today. Bailey has been feeling really good inspite of receiving the chemotherapy. Today completed day one of this treatment and she did not get sick once. Her rash is even clearing up…go figure! She is in great spirits and always has a smile on her face. Today was also an awesome day in physical therapy. She is now able to stand from a sitting position in a chair with no walker. She pushes herself up from the chair using the arms of the chair and stands to a full standing position for 10 seconds. It is so amazing to watch her do what we were told would be impossible!
It is so reassuring to know that God hears our every prayer, even when we feel like He might not be listening.
Well today was the start of chemotherapy round three. Bailey is feeling great despite having surgery yesterday. She is still a little sore but of course she doesn’t let that get in the way of anything. This round of chemotherapy will be just like the first two rounds to prepare her body for when the stem cells will need to be collected a week after this treatment ends. With that being said we will be in here for another two to three weeks.
Bailey has been having lots of fun with all of the nurses here at Tulane. She thinks they are here for her personal entertainment and of course since they play along it just encourages more shennanigans out of Bailey. She has made her physciatrist dress like Hannah Montanna and perform “Party in the USA” in her room, she has also gotten some of the other doctors to play rockband and also has her physical therapist bringing her ice cream for a special treat! Her little personality touches everyone she meets. It is so amazing to see her form such special bonds with the people who are making her better along this journey. She has come such a long way from March 1st and has made so much progress. Everyday holds new accomplishments and I couldn’t be happier or more proud of her. She is truly an inspiration to everyone she meets and especially to me.
I am very thankful for the strong and determined little girl that God blessed me with. Thanks for all the support and please continue praying.
Well surgery was a definite success today. Bailey had the old line taken out and the new one put in. She also had bone marrow taken out, a biopsy on her stomach (for the rash) and old sutures taken out. It was definitely a busy day for her in surgery. Chemotherapy did not start today because the doctor wanted to let her body have a day to heal so we will begin tomorrow.
About an hour after surgery she was ready to play. I must say my child has the energy of an energizer bunny. I am not sure where she gets this from because I get exhausted just thinking about everything she has to do…LOL! She also continues to do physical therapy everyday despite all of this. We are so very blessed with all of her accomplishments. Thanks again for all of the prayers! Still continue to pray for the rash…
Well today we found out that there is no other option in fixing Bailey’s line so she will undergo surgery tomorrow morning to replace it. The surgery will be around 9am. During surgery they will take out the line in her chest and replace it with a new one. The positive thing is that the new line can also be used to harvest stem cells as well as give her chemo. This means that the surgery they were planning to do a week after chemo ended will not be needed. I am very happy about this! They will also be getting more bone marrow tomorrow during surgery, which will make Bailey very sore.
She has been in really good spirits and has been so full of energy. We have been playing games, watching movies and even doing make overs. This morning at 7am Mimi had to get her make up done to occupy Bailey, and that was a sight let me tell you! But all in all we are having fun and making the most of our days here. The staff here at Tulane are some of the greatest people I have ever met. They are all so caring. It makes our days here so much more enjoyable.
On another note, I still need prayers not only for the surgery tomorrow but also for this horrible rash that has come back. This time the rash is all over her body and is causing her to itch non-stop. The dermatologist are still not able to pinpoint exactly what is causing this rash but I am hoping we will come across an answer soon so she can get some relief. They do have her on new oral medication as well as topical cream to try and control the itching. She scratches so much and so often she has sores all over her little body. I know I ask you guys to pray for so many things, but I am a firm believer in – Ask and you shall receive! So please once again join me in praying and believing that my little girl’s body will be completely healed and that God will intervene like only HE can. Thanks again for the support and prayers. I will keep you all updated on how the surgery goes.
Bailey was having another great day today. She is feeling so much better and has so much energy it is unbelievable! She woke up at 4:30am this morning and was ready to watch movies, play games, etc. Mimi and I were still a little tired but could not say no of course! So we watched movies and played games, then by 7am she was in her wheelchair rolling around. The strength that child has amazes me each and every day!
Although we had a great day of her feeling good, we had some not so good news today as well. The line that was repaired yesterday was tested today to see if the repaired worked and unfortunately it did not. We will have to wait until Monday to see what the surgeons will do next. The doctors are telling me that they may have another option to try something different before having to do the surgery but there is no guarantee that will work either. So I am asking each one of you to say an extra prayer that God will work through these surgeons and reveal a better plan than they would ever have thought of so Bailey will not have to postpone chemo (because this tumor needs to continue to shrink) or go through another surgery. I know he is an able God so I am believing in another small miracle.
Thanks again for all your prayers and I will let you all know what becomes of this little bump in the road!
Although the previous day was a little trying today was much better. Bailey is back to feeling good. The doctors are still giving her antibiotics and the fever has stayed away, thankfully. Also her surgeon attempted to repair the broken line that is part of her centrile line, which is where the doctors are thinking the source of infection was. We will know in a few days if the repair will work or if she will have to undergo surgery to remove the line altogether. We are really praying the repair works because if it doesn’t not only will she have to have two additional surgeries but her schedule for chemo will also be affected. This would definitely be a setback that we do not want to have to face, so I have complete faith that God will work his majic once again.
She also had an EKG and Echocardiogram which showed her heart is still as strong as it ever was. This is a good thing since the tumor is pushing on her left ventricle. As the tumor shrinks this will become less and less of concern, but her heart must remain as strong in order to handle the chemotherapy. She is really a strong little girl who seems to bounce back from almost everything that comes her way.
She is in really good spirits even though our trip home was cut short and she has somehow managed to save a ton of energy to play! We had a day full of playing rockband on the Wii, bingo and about 30 or so card games. How she manages to keep her energy up is beyond me, but I just add it to list of things I am most thankful for. As always I appreciate all the support and prayers, and I will let you all know how our weekend goes. Monday we will find out more information as to what is going to happen next with her treatment but until then, continue to pray!