Well I didn’t realize it has been a whole month since I have posted….so many things have transpired since my last post that I am really not sure where to begin, so I will start at our departure to NY. So on May 14th we headed back to NY for round 6 of 3f8. We were so very anxious to start this round and get scans over with so that we could hurry back home to enjoy a much needed summer at home. So 3f8 started on Monday, May 16th and things went as they always do. A lot of pain for poor little Bailey but of course by the end of the week she was feeling like her normal self again. The Saturday after 3f8 we started scans and that lasted until Tuesday. On Wednesday I met with Dr.Kushner to get Bailey’s results before heading home and needless to say he didn’t have good news to deliver. We were told she had relapsed. That little thing in the back of my mind was now our reality.
The scans showed that Bailey had a new spot in her head and also in her abdomen near her liver and it needed to be removed immediately. So instead of heading home as we had intended we began cancelling flights and making preparations to have surgery. On Friday, May 27th Bailey had surgery with Dr. Laquaglia. She was in the OR for 8 hours and the surgery lasted 6 of those 8 hours. I will tell you that felt like the longest 8 hours of my life. Minutes literally felt like hours! Finally Dr. Laquaglia came out of the OR to let me know that he was able to remove the spot in her head but oddly enough he wasn’t able to find anything in her abdomen. He did however take several biopsies of the area to send to the lab just to be sure there weren’t any cells floating around so to speak. Bailey spent the weekend in the Pediatric Observation Unit or the POU (pronounced poo to everyone here). Needless to say as bad as the POU sounds it was hospital heaven LOL! The nurses were amazing and Bailey was able to rest and recooperate. By Monday (Memorial Day) Bailey was being released and we were headed back to the Ronald McDonald House to finish her recovery. On Tuesday I met with Dr. Kushner to discuss her treatment plan. It was decided that we needed to start radiation to the head where the spot was removed and we would start chemo as soon as the pathology results came back. The plan was to do low dose chemo for a week if the only relapse was in the head but if the biopsies from the abdomen came back positive we would have to do stronger treatment. Of course I was expecting them to come back negative because the surgeon didn’t find anything when he went in but that was not the case when the pathology reports were delivered. The pathology reports showed that there were definitely postive neuroblastoma cells in the abdomen which prompted for strong treatment. It was decided that Bailey would do a chemotherapy called ICE, which is the second strongest chemo combination given to patients. Also she would get radiation twice a day to the site on her head during the chemo. So here we are now going through treatment just as we did at the beginning of her journey.
Today is the first day of chemo and the fourth day of radiation. She gets radiation in the morning, then three doses of chemo, then radiation again in the afternoon. Chemo will last for 5 days and radiation, twice a day, will last for 10. I will tell you that they warned me this chemo would knock her down and they were right. She got sick about 4 hours into treatment. My poor little girl, who has had to endure so much already in short 8 years of life, is once again fighting for her life. My heart is so sad on one hand to see her have to go through so much to live but on the other I cannot help but be grateful. I am so grateful that despite what life has thrown her way she still finds reasons to smile…all the time!!! She is such an inspiration to so many people that I cannot help but be grateful for this blessing that God has allowed me to have as my very own. She stays so positive throughout everything and reminds me each and every day to be thankful in every aspect of my life. I cannot imagine my life without her. She is my half that makes me whole.
Please continue to pray for her. Pray that this round of chemo works as it should and kills any lingering cells in her body that are there to do her harm. Pray that God will perform a miracle for her and completely heal her little body so that she no longer has to endure this pain. Pray that she sill get to go home soon because she really misses being home. Above all else please pray that her attitude never changes. Pray that she will always be exactly the person she is today…because that little girl makes me so proud each and every day. I feel so honored that she calls me mommie