This wil be a long one………so here it goes.
There is no easy or light way to put the news we got so I’ll just get right to it. Bailey’s scans did not give us the results we were expecting…in fact it was pretty devastating news. Not only did the cancer come back but it came back with quite a vengeance. Her new spot are in her bones and possibly in her bone marrow. She has a spot in each shoulder, one on her spine, one on her breastbone, one in each hip, etc etc…needless to say I just stared at that screen which showed my sweet little’s girl body lit up from all the areas of this awful disease trying to once again take over her little body. I was shocked, confused and down right angry. This is so unfair…she has been through so much and finally got her break, or what we thought was her break only to have it taken away again so soon. This disease SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So we reviewed the scans and Dr. Sholler did some good news for us… she had a plan. She wanted Bailey to start the Nifurtimox trial right away but since Easter was just three short days away, she thought it was in Bailey’s best interest to head back home and celebrate with family as we had already planned then fly back up to Michigan on Monday to start treatment on Tuesday. This trial consist of the chemo Cytoxin and Topotecan to be given 5 days every 3-4 weeks with Nifurtimox to be given daily. Bailey has had this chemo regiment in the past but only once so we are pretty certain she should have really good response to it. Nifurtimox on the other hand, she has never had so once again we feel pretty certain this will work for her. The trial study calls for 6 cycles with scans repeated after every 2 cycles. Of course not at all what we had planned for but as we have learned a long time ago…NOTHING GOES AS PLANNED!!!!!
So the week of chemo was supposed to be pretty easy but given the fact that it has been about 8 months since Bailey has received chemo her body was not tolerating it well at all. Needless to say the Nifurtimox didn’t help matters whatsoever. My poor little girl was puking non-stop, not eating, fighting a UTI (bladder infection), etc. It was so hard to see her like that. Thankfully she got through the week and after her last dose of chemo on Saturday we flew home. So of course we thought being home was going to be so good for her and she would start feeling better quickly but boy were we wrong. Not only did she not start feeling better but the side effects from the Nifurtimox starting kicking in, although at the time we didn’t realize that is what was happening.
So our first week at home was pretty busy with hospital visits, transfusions, etc. By last weekend things took an even bigger turn for the worse. Over the weekend we noticed that Bailey’s short term memory was gone. She couldn’t remember anything! We were having the same conversations with her several times a day and repeating ourselves like crazy….almost as if she had Alzheimer’s. To top things off she would only sleep about 2-3 hours a night. When the sleeplessness first started I gave her Melatonin to help her sleep and that didn’t work so we tried Benadryl because that normally knocks her out and much to our surprise that didn’t work. She was still having lots of nausea and vomitting despite me giving her anti-nausea meds around the clock. Her gums started to receed so bad that her entire bottom tooth was exposed almost to the root. So on Monday morning we headed to Tulane and this momma was on a mission. We had to do something to get my Bailey back! She was miserable and I couldn’t take seeing her like that anymore. Thankfully after going over all the issues we were experiencing, it was decided that the Nifurtimox needed to be stopped for a few days (as most of the side effects reverse themselves immediately once the medicine is stopped) and we needed to figure out a lower dose so she could tolerate it better. Thankfully that did the trick….by Monday night she was asking to eat (which is something she hadn’t asked to do in over two weeks), she wasn’t nauseated anymore, no vommitting, she slept, she was talking normal to us again, her memory back…our Bay was back and we were soooo excited!
So needless to say the past few days have been ok. We have had to go for transfusions but she has been eating and sleeping so we can’t complain. Today we had to start the Nifurtimox again but at the lower dose….so instead of getting 12 pills a day she is now getting 7 pills a day! She has had her morning and afternoon dose and so far so good. Praying things stay like this and we have no more issues with those crazy side effects…that was just scary! Unfortunately she is supposed to get her next cycle of chemo next week but her counts are still at zero so I think we will have to push things back at least a week to give her body time to recover. God knows we could all use an extra week before jumping back into the vicious chemo cycle.
Thankfully she is still as positive as ever, even with all the craziness that life has thrown at us these past three weeks. She is such a pillar of strength and she simply amazes me every single day. I am so blessed to be her momma on this Earth. That little girl is my heart. Please pray for her and for our family as we embark on this next chapter, mud puddle, whirlwind of life. Pray that her healing has come to pass as we already know the price has been paid…we are just believing and keeping the faith. By His stripes she is healed…not will be, but IS!!!! We firmly believe this is just a small part of her long life. She will not be stricken with this disease forever…she is healed in Jesus name. She will live a long life with an awesome testimony of what God can do.
As always thank you for continuing on this journey with us…your prayers and support carry us through! NOTHING IS IMPOSSIBLE!!!