So as many of you already know this week has been one of the hardest weeks of our lives. In no way could anyone prepare me for the past weeks events. Bailey was due for Round 3 of chemo so we headed to Ochsner’s in New Orleans on Monday, June 10th prepared for 5 days of outpatient chemo as usual. The week started off good…she was handling chemo really well, getting more aquainted with the staff and her new oncologist Dr. Vasquez and things were looking much better than the weeks prior. Well much to our surprise our week would not stay that way. On Wednesday morning at 5 am, Mimi and I were awoken by Bailey having a seizure right there in the hotel room. The seizure only lasted a minute or so but felt like an eternity! I immediately called 911 as Mimi held Bailey and talked to her trying to let her know she would be ok. By the time the ambulance arrived, the seizure had passed and Bailey was talking to us but completely unaware of what had just happened. She was very emotional and rightfully so. She couldn’t hold herself up or use her arms or legs which was very frustrating to her and did not help the situation at all. The EMT’s got her into the ambulance but almost minutes after getting into the ambulance she had another seizure. This one lasted a little longer than the first one and again felt like an even longer eternity. Upon arriving at the hospital ER she had 2 more seizures that lasted about 5 minutes each. Thankfully the doctors were able to give her medicine to help her body come out of it and to help her rest. Needless to say we were devastated that she was going through this. The doctor ordered a CT scan of her brain immediately so we could see exactly what was going on since we weren’t sure what was causing this to happen. Thankfully the CT scan was clear and showed no lesions. She was given fluids and more seizure medicines to make sure this didn’t happen again. Due to all the medications she received she was pretty out of it for most of the day. An EEG was also done to confirm if this was definite seizures and the results came back positive. At this point we all thought the trial medicine she was on was probably the culprit as this is one of the common side effects but since she was just granted a lower dose we couldn’t be 100% sure. To be on the safe side Dr. Vasquez went ahead and admitted her inpatient so we could monitor her a little more closely and to make sure she recovered properly from all the trama her body had just went through. It was also decided that chemo would be held for the day to give her body a chance to rest before hitting her again with something else. Thursday chemo resumed and she was still groggy but was talking to us and seemed to be doing ok. She was having some vision issues but it was more than likely being caused from all the medicines. On Friday she got chemo again and seemed to be making improvements as well….until that night. Around 8pm, Mimi and I were talking to her as we watched Disney and all of a sudden I noticed she kept staring at the wall and laughing. I preceeded to ask her what she was laughing at and then it happened again….another seizure. I called the nurse immediately to let them know what was going on. Little did we know that was only the first of three she would have. The third and final seizure lasted 45 minutes and was this momma’s breaking point.
No one can ever prepare you as to how it feels to watch your child have a seizure. As her little body jerked, her eyes rolled back in her head and she began vomiting, all we could do was watch and wait and pray. The helplessness you feel is indescribable. I really felt like we were going to lose her. In the 3.5 years we have been battling this horrible disease I have never felt like I did this past week. In those 45 minutes of the last seizure, I prayed harder than I ever have in my entire life…and I cried harder than I ever have. I kept begging her to come back to us…I kept telling her she was ok and we were right there with her…I kept reminding her how much we loved her and needed her here with us…I told her how scared I was….and of course I prayed and prayed. I thought it would never end but it did…and she was ok. Thankfully she doesn’t remember any of it and how I pray that I will forget too…although it is sketched into my mind and I don’t think I will ever forget.
With all that being said you can see why I don’t know where to begin…I feel like this week has been going on forever with no end in sight. After her last episode of seizures, she underwent an MRI as well as a Lumbar Puncture to make sure we weren’t missing anything (as if my girl hadn’t been through enough already). The MRI showed the lining of her brain looked a little out of sorts so to speak but that is more than likely due to the chemo and the doctors are not too worried about it at this point, especially since she just had scans less than a month ago and all images of her brain were clear. Thankfully the lumbar puncture samples proved there was no infection that we couldn’t see trying to attack her brain, which was a big relief. So basically to sum it all up, these seizures are being chalked up to side effects from Nifurtimox ( and seizures is a very common side effect when taking this drug so it is not totally unexpected). So for now she is on Keppra tiwce a day every day to keep the seizures away and we are praying this medicine works like it should, as I NEVER want her to go through that EVER again. Such a double edged sword this treament…on one hand it is getting rid of the cancer and helping my girl to get clear again while on the other hand it is causing so many issues that just aren’t fair…really comes down to how much are we willing to put up with for her to be on a treatment that works and that will give her life. CANCER SUCKS AND I HATE IT WITH EVERY LAST CELL IN MY BEING…that’s how I feel about it if we are being honest…I wish cancer got cancer and freaking died!!!!!!
So here we are today…she was finally discharged yesterday from Ochsner’s and no sooner do we get home and there comes the dreaded fever that we all so desparately pray stays away when counts are low… because all cancer parents know that means one trip to the ER followed by an extended inpatient stay! Off we went again to the ER after only 10 minutes of walking through our front door. Upon arriving at the ER the fever decided to take a hike which was even more frustrating since I drove like a bat out of hell trying to get her there before it decided to spike so high that maybe another seizure would be triggered. The doctors decided that she should have cultures drawn and antibiotics given just to be on the safe side so that is exactly what we did. Once the antibiotics were finished they decided that she could go home again unless the fever came back. Of course we were thrilled with that news as that is not the typical protocol for neutropenic fever…well let’s just say cancer does what it always does and throws another curve ball at us. Sure enough I am signing discharge papers and just as I finish the nurse is taking one last set of vitals and boom there is the fever again…so it was decided we were staying! Needless to say we got into the room around 2am so we didn’t get a good nights rest but that is ok…at least my girl was safe and right where she needs to be for now. Today she is doing good…she is up and playing on her phone and watching Disney of course. Hopefully this fever will go away in a few days and we will get to go home to let her finish recovering before it is time for her next round of chemo.
As always thank you for all the prayers and kind words we have been receiving. They definitely help us to remember just how much support we have. I apologize if I haven’t answered everyone’s messages but I promise I will try to get to them as soon as I can. In the meantime please keep praying…pray for the seizures to stay away forever, pray for continued improvement with treatment, pray for healthier days and mostly pray that her little spirit stays as positive as it always has been. She is simply amazing…after everything she has been through and is still going through she has never lost her contagious little smile…that little smile could light up the darkest of days. She is my sunshine!!!!
NOTHING IS IMPOSSIBLE
Thank you to Jenny, one of our favorite nurses at Ochsner’s for sharing the below with us…she was with us during Bailey’s seizures on Friday/Saturday and saw the effect it had on us to watch Bailey suffer through something so traumatic. The next day she came in and told us that this passage made her think of us…and it was just perfect
2 Corinthians 4:6-9
For God who said, “Let light shine our of darkness, made his light shine in our hearts to give us the light of the knowledge of Gods’ glory displayed in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen, since what is seen is temporary, but what is unseen is eternal.