June 27, 2013…. Entering into HIS rest…

Well as you all know we have had a rough couple of weeks to say the least. Thankfully my sweet girl has crossed a few hurdles and was able to get out of the hospital and get back home on Tuesday afternoon. Her fever finally went away and her counts are finally on the rise. To say we were excited to get back home and into our own beds is a HUGE understatment as it has been almost three weeks since we have been away. We have definitely had enough of the hospital for awhile! She is still really weak and not back to herself just yet but no doubt she will get there.

So yesterday I received a call from her oncologist in New Orleans saying that Dr. Sholler (oncolgist) in Michigan reviewed her MRI that was taken after the second set of seizures. Upon reviewing the MRI it was decided that Bailey should have a CT scans as well as an MIBG scan right away. We knew the MRI was showing some ”weird” areas in her skull but couldn’t be sure what exactly was showing up…was it infection, progression, etc… with that being said both oncologists have decided they want to know for sure if this is progression that is showing, so Bailey will be having the scans done in New Orleans next week.

We need more prayers…prayers that these scans will be clear…prayers that the treatment is still working like it was a month ago and getting rid of every last spot of this cancer once and for all…prayers that our storm is passing and our rainbow is about to shine through…prayers for a miracle. My sweet girl had endured so much in the past 3.5 years and she continues to battle on with the bravest of smiles and the most contagious laugh. She is truly my sunshine on these rainy days we have been facing…I cannot imagine how tired her poor little body must be, yet still she fights. So amazing!

As always I will be sure to keep you all posted as to what we find out although I am prepared for these doctors to be amazed by the grace of GOD once again…I hope they are baffled beyond belief because they can’t find a thing! Our GOD is so much bigger than all of this and there is no doubt in my mind HE has healed her.

Isaiah 58:8  – “Then your light will break forth like the dawn, and your healing will quickly appear…”

June 19, 2013….Not even sure how or where to begin

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.

June 5, 2013…The process of recovery and a very hard “see you later” because we are not good at goodbyes

Life has a way of keeping us on our toes these days. It has been non-stop to say the least. As you all know Bailey had scans in Michigan the week of May 21st and thankfully results were good. Scans are showing that the Nifurtimox trial has diminished two of her spots (one in her leg and one in her hip) and is shrinking all of the others. We also got the results from her bone marrow biopsies and she no longer has disease in her bone marrows…Praise GOD!!!! We are moving in the right direction! We still have a long way to go but thankfully the power of  prayer is working to rid her body of all this cancer once again. While we were in Michigan we got to hang out with Henley Romine and her family (one of the many families we met while getting treatments in NY). Needless to say we were so excited that our schedules finally coordinated so we could see them, as it had been a year and we sure did miss them dearly! We have stayed in touch with them over the year, of course, but we finally go to spend time with them in person and Bailey couldn’t have been more thrilled. Henley aslo had scans the same time as Bailey and they also received great news that Henley’s treatments are keeping her stable…so we had so much to be thankful for and so much to celebrate!

Now for how Bailey has been doing while recovering from her last round of chemo….not so good! The process of recovery from chemo is so so HARD on her. My poor girl is struggling to say the least. She is still having a hard time dealing with nausea, vomitting, diarrehea, etc. Needless to say she has lost a total of 17 lbs since April 1st and boy does it show. She is so thin and fragile….breaks my heart to see her like this and trying everything in my power (appetite stimulants, bribery, threats, etc)  to make it better yet nothing is really working. As if dealing with those issues weren’t enough, her little body decided to start running fever on the Tuesday after returning from Michigan. Although she was admitted inpatient from Tuesday, May 28th – Saturday June 1st, thankfully all tests came back negative for any infections which basically means her body was just running neutropenia fever (from her immune counts being so low for so long).  After a few days of lots of IV fluids and antibiotics we finally got the fever under control and we were able to go home.

We are still battling the “no appetite” thing but thankfully we started a new appetite stimulant, Marinol, that seems to be helping. I really didn’t want her on this particular appetite stimulant but we are running out of options and the next step is a G-Tube (feeding tube) which we are trying to avoid at all cost. She is now eating at least two small meals a day which is a big improvement from her half of an apple and one-third of a banana per day. Her counts are still slowly coming up and we are so grateful as she will have to start chemo again on Monday, so we have been praying her counts will recover enough so she wont go into chemo week feeling horrible. The Michigan hopsital has also decided to lower her dose of Nifurtimox (as of yesterday)  so she will now take 5 pills instead of the 7 per day she was taking…praying this will make a big difference with some of the issues we are still having but still work to continue getting rid of those horrible cancer spots at the same time. My sweet girl is still not herself and her laughter and silliness are missed terribly!!! Most of her days are spent in bed napping off and on or watching tv. Thankfully we have been able to have some of her favorite people come and sleep with her which has helped to cheer her up!!!! So a big thank you to Jordan Daigle, Megan Fontenot and Brittany Arabie!!!! You guys rock!!! Cody has also set up her mattresses in our living room so she can have “camp outs” in an effort to try to make our last few days at home as fun as possible for her! He even slept with her last night in the living room since she didn’t have company over…the little smile on her face was priceless! (YES I know my husband is pretty amazing and we are so blessed for everything he does for us!) Mimi has also been a huge help as always…Really don’t know what we would do without her! She has always been a pretty amazing mom but she certainly out does herself when it comes to being Bailey’s Mimi!

And for the last, but certainly not least, topic of discussion…our wonderful Dr. Kanter. As some of you already know, Bailey’s oncologist is moving to South Carolina and will no longer be in charge of Bailey’s care. Let’s just say it took me awhile to absorb this information and I had a slight meltdown when she broke the news to us in clinic a few weeks back. (Mimi blamed it on the preggo hormones but let’s just say that was not the case, I was devastated). The thought of this amazing woman not overseeing Bailey’s care absolutely scares the heck out of me. She was the first person we met on our first trip to Tulane at 1am when Bailey was being rushed into emergency surgery when she was diagnosed. She is my go-to person for each and every one of Bailey’s medical needs, she is there for us at all hours of the day and night when Bailey is having issues and I need direction, she moves heaven and earth to help me get the best possible treatments for Bailey no matter what obstacles are in the way, she is my voice of reason when I am at my wits end with the craziness that life with cancer throws at you, she has become our FAMILY…I feel like we are losing part of our family!!! Thankfully this awesome lady has always had Bailey’s best interest at heart. Never once did she make us feel as if Bailey was just another patient or just another number in her files…she always always made us feel as if the treatments and decisions she made for Bailey, would be the same treatments and decisions she would make for her own children. To say Dr. Kanter is our God-sent is an understatment! In true Dr. Kanter fashion when I said we didn’t feel comfortable staying at Tulane, she said I already knew you would say that and I already have someone in mind. (Seriously this woman is amazing). With that being said, to fulfill my request she referred us to Dr. Robert Vasquez at Ochsner’s Hospital in New Orleans. She reassured me that he would take care of Bailey the same way she did and boy was she right!!! We finally had a chance to meet Dr. Vasquez and his team on Monday of this week and we LOVE them! (Perhaps when I told Dr. Kanter we were moving to South Carolina with her and I would become her nanny for her kids she understood I meant business…LOL just kidding we are not moving although the thought did cross my mind :)   ) So as of Monday, Bailey is officially going to Ochsner’s for our at home hospital. We are going to miss the staff at Tulane tremendously (Sheri, Mary and Emily have also become our family, shoulder to cry on, mediator when I loose my mind and want answers NOW  – because patience has never been my virtue) and it breaks my heart to know that we will not be seeing them every week like we have for the past 3-1/2 years or emailing them several times a day to let them know what is going on with Bailey…but at the end of the day I have to do what is best for Bailey…. and Dr. Vasquez, and his vast knowledge of this horrible disease that is trying to take my sweet girl from me, is what is best right now if we can’t have Dr. Kanter.  So for now we will say “See you later” to Dr. Kanter because I don’t believe in goodbye’s and let’s be honest…she can’t get rid of us that easily :)

As always we appreciate all of the prayers and support. We ask that you continue to pray for Bailey…pray for her little body to get the break it deserves. Pray that this cancer is going away for good. Pray for her laughter and silliness to come back to us and soon!!! Pray she begins eating again. Pray for healthier days that are free from cancer forever!

P.S.  Tomorrow is the day we find out what Baby Reed is – or Little Fetus as Cody and I have been callling it since we cannot decide on names! I will try to find the time to post on here as soon as we know (and yes I know I have been slacking on my updates as several of you have told me lol)

 

Our God-Sent Dr. Kanter!