Let’s just say I hope you have more than a few minutes to read because I have alot of updating to do! Starting with the “oh so sure Bailey’s disease has spread to her brain scare”. Well as you all know the oncologists wanted to do a follow up MRI after the first set of seizure that took place around father’s day. (And yes I said first set because little did we know there were more to follow but I’ll get to that in a minute). So off we went to New Orleans to do scans because the oncologists were very sure that the seizures were due to progression in her brain because of “how off” the MRI results looked after her seizures. Well it was decided that since we were doing an MRI we should just go ahead and do an MIBG scan as well to compare both…well let’s just say I love God’s way of working!!! So my sweet girl underwent the scans and late that afternoon I get a call from Dr. Vasquez (Bailey’s new oncologist at Ochsner’s) and I could tell by the tone in his voice that he was pretty dumbfounded (but in a good way). The conversation started like “Hey Brooke, it’s Bob…sorry to call you so late but I have been waiting on results all day and well….I really don’t know how to put this into words as we have never seen anything like this before so I will just read you the report word for word.” Let’s just say not only did the report show that Bailey had aboslutely NO disease in her brain…but it actually showed that her MRI was clearer than most people that have undergone as much chemo as she has. In his exact words “this is a perfect MRI, one that I would expect to read on you or me who has never had a dose of chemo ever….I am pretty amazed.” Yep that is my girl and that is the power of prayers…AMAZING! So now that we had that out of the way, he received the MIBG reports (scan that detects neuroblastoma) the next day and those results were good news as well. Although there was disease still present, no spots appeared larger and no new spots appeared…so basically we had stable…and stable is great!!!
So off we went to enjoy our annual family camping trip…relieved and in awe of how great God is and how blessed we are! Our week of camping was just what we needed…a week spent with our family…laughing, playing, cooking out, swimming, making smores and most importantly making memories! Bailey felt great and although we had to detour to the hospital a couple of times for blood work and for transfusions, we still made the best of it. She was also blessed with a motorized scooter that was lent to us for the week…definitely made life a little easier on everyone. She was able to get around from here to there without help and it let her regain some of the independence that is lost with being in a wheelchair. The boys enjoyed fishing, riding their bikes all over that campground and playing in the rain! We celebrating their 9th birthday there as well and they were more than blessed with money and gifts to say the least. It was definitely what our souls needed before heading off to New Orleans for another week of chemo.
So for the week of chemo and all the unexpected events that were to come! Bailey started chemo on July 15th and it was decided by all of her oncologists at both hospitals that she would only get three days of chemo instead of the five that she had been receiving before. So Monday, day one, went on without any issues…she was feeling great and even asking to eat! Day two went just as well without any hiccups…then came the scary parts. On Wednesday morning at 2am, Bailey woke up with a horrible headache…this is not unusual as certain medications she is on will cause her to get really bad headaches. So I gave her tylenol and benadryl to help with the nausea she was experiencing as well. Little did we know the headaches would be the least of our worries…about 20 minutes later she began puking and puking and puking…it didn’t stop. She continued to puke every 20 – 30 minutes. Around 6:30am I realized she was acting a little different, but was still talking to us and responding. She asked to go to the restroom so as Mimi was putting her in her wheelchair we noticed her right arm wouldn’t move. Well things just went downhill from there…she began having blank stares when I was talking to her (absent seizures). So off we zoomed to the clinic…when we got to clinic things were still spiraling down so her oncologist decided she needed to go to the ER…thankfully we were able to get her to the ER just in time. Once she was settled in the ER her seizures started getting worse…she began shaking and staring off and not responding…just like last time. So it was decided that she needed to go inpatient so they could keep the seizures under control and so they could monitor her closely since we still had one day of chemo to go. After much discussions with Michigan it was decided that we would hold the chemo for a day to see how she did. Thankfully she recovered by Wednesday night was was up and talking to us on Thursday. Bailey received her last dose of chemo and thankfully with the added seizure medicines she didn’t have any other episodes…but that was only the beginning.
Ater much discussions between Michigan oncologist and our home oncologist, it was decided that Bailey would need to be removed from the trial study. Unfortunately we knew without a doubt that the Nifurtimox and chemo combination just wasn’t working for my sweet girl…that was definitely the cause of the seizures which means she could not continue receiving the Nifurtimox according to trial requirements. Thankfully her MRI proved she didn’t have progression to her brain which helped to determine the true cause of all these seizures…the trial medicine Nifurtimox. So here we are back at square one…
That being said we are traveling to Michigan tomorrow (my birthday) so Bailey can have scans again to see if this latest round of chemo did any damage to her remaining spots and also to discuss where we go from here. Unfortunately Bailey has had alot of chemo and has been on alot of the more agressive trials in the past 3.5 years, which leaves us with very limited options. What Michigan is hoping is that there will be a soft tissues spot that can be biopsied so she can get on the personalized molecular guided trial. That would be a great option for us but the problem is that her spots up until now have all been in her bones, meaning there would be no possible way for them to get a biopsy…but God works in mysterious ways so we are trusting that if it is meant for her to be on this trial, HE will open those doors…and if not then HE will lead us to where we need to be. I have also been in contact with her doctors in New York to see if there are any trials she might qualify for there and they will review her scan results fromthis week and let me know their recommendations as well…
So basically we are going to Michigan with only hope and faith! I truly believe my little girl is being healed even though we are at a crossroad again. I know God has opened doors for us when doctors told us there were no doors to be opened…so I believe HE will lead us there again. We are in no way giving up and we will find something…we just need prayers for guidance to know what is right for Bay. I don’t want her on anything that diminishes her quality of life…I want her to be able to have more good days than bad…I don’t want her in a hospital room for weeks at a time…I want her to live and to be happy! This Nifurtimox trial was extremely hard on her…so I can’t say that I am totally disappointed that she won’t be able to continue on although it was helping to get rid of the disease…such a double edged sword sometimes! So please stand with us in prayer and faith that God will work all of this out as HE always does…We choose not to worry about things we cannot control and this just happens to be one of those things.
On another note…the same week that Bailey was getting chemo, experiencing seizures again and getting kicked off of her trial, etc…our sweet little friend Henley,that I have asked for you all to pray for so many times before, gained her angel wings and is forever cured from this horrible disease. Henley Hazel Romine passed away on Friday, July 19th and according to her parents, she went peacefully as only Henney could do. I cannot tell you how much this broke my heart into a million pieces…there are no words to describe the loss we feel and I feel crazy for even saying that because she isn’t my daughter…but they are our dear friends and they have fought just as long and as hard as we are…that is what is so devastating. Little Henley was full of life and her little spirit was unlike anything of a typical 4 year old. It is just so unfair! Unfortuantely I wasn’t able to go to Indiana for her celebration of life although I tried to work it out…but with Bailey just being released from being inpatient from her seizures, etc it just didn’t work out….once again that broke my heart as I just wanted to be there for Lynsey and Grant… so of course I had to tell Bay of Henley’s passing just in case someone mentioned anything in front of her when we go to Michigan, as all of the staff knew we were close to them and knew we hung out if schedules allowed for us to be there at the same time. In true Bailey fashion, my little girl blew me away as only she knows how. As I begin to tell her of Henley’s passing, her big blue eyes look back at me, as my eyes are filling with tears and she says “Momma dont’ be sad for Henley, it was her time to go. She has been having it really rough for awhile and sometimes our bodies just get tired. Sometimes even though we really want to keep fighting it is just too much, but I am sure she is already running around in heaven being silly.” Wow…what an old little soul my girl has! Of course her comment led me to ask her if she feels like her body is tired and ready to stop fighting…to which she answered “ no momma it isn’t, but if ever it gets too tired I’ll be sure to let you know ok”…what exactly do you say to that…how exactly are you supposed to tell your 10 year old that you never want to hear those words, even though you know it is reality. On one hand my heart is so happy that even though she is only 10 years old she understands how life works…some people live to be really old and some people only get to be here for a little while…but on the other hand it breaks my heart that she knows such things at only 10 years old. She should not know how it feels to lose a friend at this age…she should not have to worry about telling me when she thinks her body cannot handle treatments anymore…she should not have to understand that her friend had the same cancer she does and this could be our reality…heck she shouldn’t even have to know that kids get cancer!!!! Seriously…I hate it and I hate what it does and I hate what it robs families from…it’s just unfair no matter how to try to look at it…what did a 4 year old do to deserve the unfair hand she was dealt…what did my 10 year old ever do to deserve this…we will never have the answers to all these questions and I doubt there will ever be a day where this all makes sense. What I do know is that Henley is now in heaven, free from pain, free from disease…she is getting to be a kid! I know that any suffering she felt while on this Earth is nothing in comparison to all the bliss she is now enjoying in heaven…I know if she could let us know, she would say “Hey watch this” and then show us every good and blessed thing there is to see of that wonderful place. I know she will live out eternity with Jesus…and I am so happy I know all these things, because I cannot imagine being on a journey such as this without that type of faith! It is because of that faith we continue pressing forward…because we know that no matter what, we cannot control what happens here on Earth but we can control where we will spend eternity…and that brings me more comfort than anything else in this world!
Once again please continue praying for Bailey and continue praying for all of the other kiddos that are fighting just as hard as we are…Tripp, Ashtyn, Tristin, Brooke, Kassidy, Cierra, Noah, Alyssa, and many others… and for those families, like our dear friends, that must learn a new way of living until they meet again…NOTHING IS IMPOSSIBLE!
Jeremiah 30:17 “But I will restore you to health and heal your wounds, …”