Well let me first start by saying that I hope everyone had a very Merry Christmas. Bailey and I had the best Christmas full of laughter and family. It was so nice to be able to spend the holidays at home. As some of you may already know we thought that might not happen as I had to take her back to Tulane last Saturday.
As we were enjoying our stay at home, my little girl just wasn’t feeling very well on Saturday, Dec. 18th…I could tell she wasn’t as perky as normal but I didn’t realize how bad she felt until I took her temperature that was 102.9! Immediately I called Dr.Kanter as this is the first rule of being a cancer patient…anytime there is fever dial as you drive, to the ER that is! So off we went to Women’s and Childrens to get her started with the blood test and antibiotics to get the fever down. Needless to say Dr.Kanter felt it was in her best interest to go to Tulane so they could keep a close eye on her considering the new treatment and new medications she has started.
I must say that although we did not have any hospital stays in our plans for our three weeks at home, it was great to see our Tulane family again. You don’t think you would miss that place but you do when you spend as much time as we have there. I think the feelings were mutual as every nurse greeted us with the same ” We were so excited that you are here…not why you are here of course but for the fact we missed you!” After many blood test, urine test, etc. it was determined that she had an upper respiratory infection but thankfully it was caught in time. So from Saturday until Wednesday we were at Tulane and Bailey was quarrantined to her room. She did not like that of course because she is so used to roaming the halls when we are there but there was no way we were chancing her getting exposed to any other viruses that may have been lurking! Christmas at home was what we had planned and that is what Mommie was determined was going to happen!!! LOL
Our Christmas at home was awesome. We had a great time with our family and was able to do our Christmas traditions that we do every year. Bailey got tons and I mean tons of presents!!! Santa was very good to her this year…I think he knew that she deserved the best Christmas ever!
On Wedensday we will be headed back to New York where she will get the third round of antibody treatment starting on Monday – Friday of next week. On Thursday (the day after our arrival) she will have bone marrow drawn and tested to make sure there is no evidence of disease in her bones. This is routine check after every other antibody treatment but as ususal your prayers for clear results are always appreciated.
Next week as you know will be her tough week with the treatment. Monday through Wednesday are the hardest on her and the most painful so please keep her in your prayers. Also she had to start Accutane after every antibody treatment for a total of 6 cycles and I will tell you this is no walk in the park for her either. Accutane is what alot of people with severe acne are prescribed but researchers at Sloan Kettering have found an agent in that medicine that fights Neuroblastoma so therefore those children are prescribed this medication as well. She only stays on the accutane for a total of two weeks after the antibody treatment but the side effects during those two weeks are awful. This past dose was the first time she was on it and those two weeks felt like forever! She is very quiet and gets emotional at the drop of a hat, not to mention what it does to her skin. Her lips become severely chapped as well as her bottom. Thankfully she will only have five remaining cycles of this medicine! I hate to see her like that although I know it is doing good…I still don’t have to like it!
So now that I have updated as best I can on what has happened and what will happen in the next week, please continue praying. I know that all of this sounds awful but I also know that God sees her and the struggles she faces…I know we are not alone. None of these things take God by surprise. Thank you as always for keeping us in your thoughts and prayers…it is greatly appreciated more than I could ever express!!! Until next time…..
Wow…a month has passed already since my last post!!! So sorry that I didn’t update more but I didn’t realize how busy we would be during our month long stay in NYC. As some of you may know we are back home. We flew in on Saturday, Dec. 4th. We were so happy to see Louisiana again! NYC is a great city but there is no place like home.
During our month long stay, Bailey completed two rounds of the 3f8 treatment as well as her radiation treatments. The 3f8 treatment is by far the worse treatment that she has had on her journey with neuroblastoma. It is very painful for her to endure. The treatment is only for five days and last only 30 minutes a day, but those 30 minutes go by VERY slow when you are sitting in that room. Monday and Tuesday are definitely the worse days of treatment as her body has to get used to the antibody going in. She pretty much takes the dilaudid all day, sleeps all day and night, and doesn’t eat very much. By Wednesday night she starts feeling a little better and actually wakes up for a few hours to play. Thursday and Friday are the easiest days of treatment because her body has somewhat adjusted to the pain it will feel. Thankfully she gets a three week break before her next treatment!
As for the radiation – that was a breeze!!! She did the radiation twice a day for seven days. We went at 8am and 2pm everyday and the whole treament lasted about 5 minutes each time. It took more time to set her up on the table than it did to do the treatment. I will say when they came to do the “tatooing” for radiation that was a bit scary for her. They first took her in and put her on the table to line her up with the lasers. Unfortunately this was done on a 3f8 treatment day so Bailey was not in a good mood or feeling up to being put through anything else that day. After the lining up with the lasers were done, they took a marker and drew on her body the places where the radiation would be administered. Bailey being the obedient child she somtimes is, looks at the lady and says “I have to ask my mommie if you can draw on me because she doesn’t let me draw pictures on myself and she might get mad at you”. Needless to say everyone in the room busted out laughing. Once the marks were made, they had to come in the next day and actually do the tatooing which consists of using a needle to inject ink into the surface of the skin to leave permanent marks so that when you go for radiation they can line you up exactly as you are the first day they do the initial lining up with the machine. Bailey was not excited about being stuck with a needle in five different areas on her abdomen, but after much negotiating and lots on emla (numbing cream) they tatooed her. That was the hardest part of the radiation if you ask Bailey…LOL!
So as you can see we had a pretty busy schedule although we did find some time to have fun. Cody flew up to meet us on week two of our stay so we had to go sight seeing of course. We took Bailey to the Lion King on Broadway and all I can say about that is AMAZING!!! That is definitely something everyone should go see at least once in their lifetime. Then to make an even better experience, one of the radiation techs arranged a special backstage pass for us. We got to meet most of the actors as well as see all the props and go into the dressing rooms. Bailey was absolutely on cloud nine! We also go to see the central park zoo and we also took another carriage ride. We had a blast!
So of course we were there on Thanksgiving and that was a little sad being away from our family, but the Ronald McDonald House definitely went all out to give the families there a wonderful Thanksgiving. Not only did they provide a fabulous feast but they also took everyone out to the Macy’s Thanksgiving parade. There was a special section for the Ronald McDonald House families to watch the parades. We were able to go in front of the barricades because Bailey couldn’t see from her wheelchair. We were so close we could actually touch the strings of those big balloons! And yes they are HUGE!!! Way bigger than you can imagine! It was a great Thanksgiving away even if we didn’t get to be with our family. During the parade my sweet little girl looked up at me and said “Mommie this is really fun but I wish we were home so I could eat with my family and play with my cousins.” It made my heart so happy that my little girl really knows what Thanksgiving and the holidays are really about….Family!!!
So we are here for three weeks spending time at home with family and friends. I am so thankful that we will get to spend Christmas at home. Needless to say we have been extremely busy since we have gotten back so my Christmas tree and decorations is a work in progress, although I plan to have them up my this weekend! Bailey has started physical therapy again and thankfully she did not regress in the progress she had made before we left. Her legs are getting stronger and her physical therapist is thinking it won’t be long before she can walk with a walker on her own!!!
As always, thank you all for your faithful prayers and kind words. Prayer is what keeps us going and is what will carry us through. This has definitely been a life changing year for us but the blessings we have encountered are far greater than any turmoil we have faced. I will keep you posted on our stay at home as I know we will be busy but enjoying every minute of it!