Geez Louise over a month…wowzas!!! So let me begin by saying sorry that I haven’t posted. I guess I didn’t realize how busy we have been and how much we are enjoying every second being at home! So much has happened since my last post so forgive me if this is a little lengthy. First let me begin by saying we went on our cruise and it was absolutely wonderful!!! We decided to surprise the kiddos and not tell them any of our plans. To see the excitement on their faces was priceless! We left on Saturday, May 26th out of the Port of Galveston. When we arrived at the port and the kids saw the ship, let’s just say a pair of earplugs would have come in handy about that time lol! To say they were ecstatic is an understatement…and of course we were overjoyed that we would no longer have to hear the most dreaded vacation question “Are we there yet?” lol! On our cruise we had stops at Progresso, Yucatan and Cozumel! We made the most of our trip by frequenting the pools, water slide, endless ice cream, desserts, foods, etc. We also decided that we all wanted to swim with the dolphins so at our stop in Cozumel we did just that. Needless to say not everyone was so thrilled with dolphins once we were actually in the water with them. Bailey and Seth decided that hanging on to Cody for dear life seemed like the thing to do, not at all what we expected from them but as we have learned we always expect the unexpected! They eventually stopped screaming at some point during the experience although Bailey made sure to tell me to keep that fish away from her…what an experience! Anyways if you are reading this and see her at some point, please, please, please do NOT tell her I put this on here…she would NOT be happy with me! Let’s just say when I show people the photos of us with the dophins… petting them, kissing them, dancing with them, etc…I get the look of “mom are you seriously showing the pictures with me crying the entire time and making a sour face in the background”…so while we all think it is a funny memory, Bailey and Seth are just not there yet lol! Aidan on the other hand LOVED it! Anyways we had fun and we are so thanful we were able to make this memory together as a family!
Upon returning from our vacation, I tried calling Sloan Kettering in NY to see what the plan was for Bailey. Needless to say I didn’t get a return call until Monday at 4:15pm telling me that the trial has been pushed back yet again and now the new start date is in August. With that being said, Dr. Basu suggested that she continue getting chemo every two weeks until then. As we were talking and figuring out the schedule we realized that in order to keep things on course Bailey would have needed to start chemo that day which of course was impossible since it was now 4:30pm. So I then had to start making phone calls to Dr. Kanter at Tulane to see if it was possible to get us on the schedule for the remainder of the week. Of course Dr. Kanter was accommodating as always, because she is that awesome, and Bailey was able to start on Tuesday. With that being said, the overall dosage of the chemo has to stay the same so they decided to divide the five day regiment into four days to make sure she got the full dosage….little did we know….my poor little girl was so sick last week. It has been awhile since she has been that sick and my heart was broken for her. On one of the days she kept throwing up so much that it took 4 nausea medicines and an IV dose of Benadryl to make her sleep in order to stop it. Let’s just say I was not a happy mommie that my little girl had to endure this because of poor planning on someone else’s part…of course she is better now and mommie has calmed down a bit but regardless I was in mother hen mode! Thank God Mimi is there for us every step of the way because there is no way I would be able to drive back and forth to New Orleans everyday, while still working remotely from the hospital, trying to entertain my little girl and trying to catch puke as I am driving! Mimi we love you and appreciate everything you do for us!!!! I know I tell you thank you everyday but seriously THANK YOU!!!!
So here we are again, another week of chemo down and we are on our two week stretch until the next time. We are going to New Orleans next week to get a couple of scans done just to be sure the chemo is doing it’s job and keeping my little lovebug clear. If all is clear, as I am faithfully believing it will be since God has healed her, she will continue getting more low dose chemo until August when it is time for her maintenance treatment to start. We are also heading up to Philadelphia in mid-July to CHOP (Children’s Hospital of Philadelphia) to meet with the neuroblastoma team there to discuss second opinions,etc. I am trying my best to find any maintenance options that are promising and will allow us more time at home. So hopefully they will have good news to share with us when we go 🙂
As always thank you for the prayers and support. This is a relentless disease with no cure but our faith along with the faith and prayers of all our supporters will prove those statistics wrong. My little girl will surpass the 30% five year life expectancy mark we were given back in March of 2010. There is not a doubt in my mind that God is able…He is able to heal Bailey, keep her clear and allow her to live a long and prosperous life with an amazing testimony of His love and power.
Please keep our dear friends the Romines in your prayers. Little 3 year old Henley is fighting the same cancer as Bailey. Her family recently got devastating news that every family dreads…the treatments didn’t work and there are no other options. Her family was sent home with no plan and the reality that this disease is taking over her little body. They are an amazing family and even though faced with such devastating news, they are not giving up hope that God will come through with a miracle as only He can do. They are a family that is very dear to our hearts so please say extra prayers for them and all of our special friends we have made along this journey.
Also we will be having another blood drive for Bailey in July so please keep this in mind! I do not have the dates yet as we are trying to get a building, etc but as soon as I know I will post on here so everyone can attend. We will be selling hamburgers again as well as Bailey necklaces, bracelets, t-shirts, baked goods, etc.