Well we are home…after another horrible, painful and intolerable treatment week we are home! Our trip definitely started out to be anything but easy. For starters, the suitcase that had Bailey and I’s clothes, was mistakenly left at home and we didn’t notice until 8pm on Saturday night (the night before our flight to NY) when we were in the hotel in New Orleans, which meant there was no time to go back home to retrieve our things. So Bailey and I made the most of this mishap and found the nearest Target to get a few outfits to get by with for the week. Then if that wasn’t bad enough, when we landed in NY, I didn’t grab our phones from the seat back pocket, so our phones were left on the plane. I noticed that I had left them as soon as we got into the taxi, so I made the taxi driver pull over so I could go back in side to retrieve them. That turned out to be a complete waste of time, because the staff memeber that was supposed to go get our phones “didn’t get around to it” as he put it, although I was standing there waiting all the while. Unbeknown to me, mimi and Bailey were getting kicked out of the taxi and put on the curb with our luggage because the taxi driver couldn’t wait any longer for me to return, despite mimi saying that we would pay extra if he would just stay. So as you can see the beginning of our trip was definitely a test of my patience to say the least. As any sane person would do, I simply laughed along with Bailey and Mimi of course, because let’s face it…it was a pretty comical sight to see my poor mother with three suitcases and two carry on bags and poor little Bailey in her wheelchair standing on the curb in the middle of one of the busiest airports in the world, waiting on me to return because the taxi driver kicked them out! Bailey’s journey has definitely taught me this valuable lesson about days that don’t seem to go your way…no reason to get upset and ruin a good day…just learn to laugh, eventually everything will work out :)
My little girl has finished the second high dose round of 3f8 and I couldn’t be happier. Once again she had a very rough week. I was hoping that this round would have been a little easier on her since her body already had such a tough time with round 1 but unfortunately that was not the case. Monday of treatment was probably one of the most scariest days of my life. As Bailey was in the middle of treatment her heart rate elevated over 200, her blood pressure went to 57/36 and she was unresponsive. There were three nurses in the room trying everything they could to get her to respond and nothing was working. They pushed on the middle of her chest were her mediport is ( a very painful thing to do as her mediport sits directly on her breastbone)…nothing…they squeezed her feet (which is a very painful thing for Bailey due to all the nerve damage she has from the original tumor)…nothing…they sat her up in the bed and shook her while her little body was basically lifeless…nothing! As they continued to try to get her to respond, mimi and I started praying as we stood by watching in complete disbelief as to what was happening right before our eyes. There was my little happy go lucky girl, who is always smiling and laughing, laying there unresponsive in this hospital bed. It was definitely one of the worst feelings to stand by and watch knowing that I could not take this away. After several minutes, which felt like hours, Bailey finally started responding. First she opened her eyes but quickly shut them, then she softly squeezed the nurses finger….and this was the signs they were waiting for! They began pumping her with fluid and eventually she came out of it and was answering us, although not in the most understandable language but we were happy she was making noise. The rest of the week was very painful for her but at least without all the scary issues that she experienced on Monday. Her nights were definitely worse than the days as far as pain goes. This round she was put on two pain patches instead of just one like the first round in addition to the dilaudid around the clock every threee hours, in hopes that this regiment would bring her some relief but unfortunately it did not and she had to suffer through as best she could.
Thankfully the high dose treatments are over and we are home to celebrate the Thanksgiving holidays with our family. We are so thankful that we will get to be home this year for Thanksgiving. Last year we spent the entire month of November in New York and although the food was good, the Macy’s Thanksgiving Day parade was fun…it just wasn’t home! So here we are, at home and ready to relax for two weeks until it is time for us to return to New York. We will fly out on November 30th because Bailey will have to complete 14 cycles of radiation before her next 3f8 treatment begins, so we will have to spend 2-1/2 weeks in New York on our next trip. She will also repeat scans during our trip in December so I ask for extra prayers that all scans will still show clear and reconfirm her NED status!
As always thank you thank you thank you for all of the continued prayers and support! We are forever grateful for the support, prayers and blessings!