So this is definitely not the post I was looking forward to posting…we are here in NY again. We arrived on Nov.30th so Bailey could start radiation on Dec.1st. Our trip here this time was to consist of radiation for 7 days (2x a day) then scans, then another round of 3f8 then home for 4 weeks. Needless to say we have completed the radiation as planned and the scans. Unfortuantely the scans did not give us the results we were hoping for or expecting for that matter. There is a new spot that is showing up on the CT scan as well as the MIBG scan. It is 1.3cm and near Bailey’s esophagus. With that being said she will not be able to get 3f8 antibodies.
Yesterday is when I got the news, so of course our treatment for next week has changed. Bailey will now be receiving chemo on Monday and will continue for 5 days in hopes that this will get rid of the spot. Dr.Kushner mentioned that he would possibly like to do a biopsy first but needed to review this with Dr. Laquaglia first (the surgeon). Due to the location of the spot this could be a very risky surgery. The spot being near her esophagus could, of course, be right in the middle of a cluster of blood vessels which, of course, is dangerous in itself and there is also the risk of causing damage to the esophagus. With that being said I decided that I did not want to put Bailey through another surgery, especially one of that nature. I wanted to start the chemo regiment like we would have to do anyway whether or not the biopsy was done. The plan is for her to get cyclophosphlymide and topetecan for 5 days. This is a very low dose chemo that goes in through IV for a total of 1 hour. This chemo should not cause hair loss, nausea, diarrehea, etc like the last low dose chemo she is on. We will fly home on Saturday, Dec.17th as we were planning to do so we can enjoy the holidays at home with family and friends. We will repeat scans after the first of the year to see if the chemo did it’s job and got rid of the spot…once we know those results we will then meet with the doctors here to come up with the next step.
This type of cancer is a very tricky cancer as it comes back in the oddest places. It is also very aggressive. Although this is not good news whatsoever, we are still thankful that the spots she has is small. Small spots are manageable and because Bailey responds so well to chemo we are very hopeful this will get rid of that spot! We are so very thankful to have such a wonderful team of doctors behind her constantly working to find the best treatment for her. I am also glad that we serve a GOD that is much bigger than all of this! There is not doubt in my mind that HE can heal Bailey. HIS scripture says” by his stripes we are healed” and “He will make everything beautiful in its time”.
Although we have experienced some bad news this trip, we also have been having some fun. Bailey got to meet Taylor Swift, we went to a Winter Wonderland Formal, we went to see The Nutcracker and she has been receiving Christmas presents almost daily! NY is definitley a great place to experience the Christmas spirit!
Please continue to pray and have faith with us that her miracle will happen. Nothing is IMPOSSIBLE when you have faith. Faith and prayer is what has brought us to where we are almost 2 years later despite what statistics we were up against. We will continue to fight and we will never give up. Also pray that God works in Bailey as well. Pray that her attitude will stay positive and her faith will stay as strong as it always has. For 9 years old she is facing such hardships but I do believe that God has a plan for her and we will do whatever it takes to see HIS plan unfold. Thank you as always for your continuous prayers. I will keep you posted on the next step of our journey…..