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!

 

May 17, 2013…. Life lately

Well I am just realizing it has been a month since my last post…geez life has been busy! My sweet girl is hanging in there…some days are good but most days are hard. Not sure where she finds the strength to fight like she does but let me tell you she is a fighter. Since my last post she has completed another round of chemo, last week actually. Her little body took 4 weeks to recover before she was able to start the next cycle but thankfully she did recover. Since she has had so many treatments over the past 3 years her recovery time takes a little longer than it did when this all started. Basically her bone marrow is tired and rightfully so! Anyways she completed round 2 of chemo at Tulane last week and overall she did really well. Thankfully she wasn’t as sick as she was during cycle 1 so we were pretty excited about that. We stayed in New Orleans the entire week of chemo just because it is so much easier on her and me these days as Baby Reed sucks up what little energy I do have. We finished up the last day of chemo on Friday and headed back home. Thankfully our wonderful neighbors, Zack and Nicole Cary, had supper ready and waiting for our arrival. They are truly the best neighbors ever and we are so thankful for their friendship!!! We enjoyed our supper and a quick visit then headed home to what we thought would be an uneventful weekend. Unfortunately this Nifurtimox had different plans and my poor girl started getting extremely nauseaous followed by projectile vomiting that lasted all day. Needless to say by that night I decided that I was going to hold her Nifurtimox medicine until Monday. I wanted to talk to the doctor in Michigan to see what we could do ….because she can handle feeling yucky from chemo and she can somewhat handle feeling yucky from the Nifurtimox, but feeling yucky from both at the same time just isn’t fair or tolerable for that matter!

Thankfully we went to clinic on Monday of this week and the doctors agreed that we needed to hold the Nifurtimox again for a couple of days to allow her body to recover without all the vomiting and also to see if her appetite would come back as she wouldn’t eat ANYTHING. While at clinic we also discovered that Bailey’s UTI was not gone despite the full cycle of antibiotics she had just completed days before….so back on a different antibiotic she goes. My sweet girl cannot catch a break these days but we have faith better days are ahead! This week continued with transfusions, hopsital visits, shots to boost her white blood cells, elevated liver enzymes from the chemo (thankfully they are coming down to normal levels again) etc etc. We also found out this week that Michigan is ready for her to repeat scans next week so we are flying out on Monday and she will have scans on Tuesday and Wednesday.

Please join me in prayer that this treatment is working. Pray and believe with me that my little girl is healed. Pray the scans next week show that healing is taking over every last cell in her precious little body. Pray for healthier days, no more days of feeling yucky, days that we can enjoy and have fun together at home as a family without all the hospital runs, recovered counts, clear scans that will continue throughout her long life, no more shots, no more medications, no more infections, strength, etc etc etc. I know she is healed and I firmly believe she will live a long and healthy life free from cancer forever….it is just really hard to watch her struggle in the meantime. My little girl deserves a break. She deserves to not be hooked up to an IV all day long. She deserves LIFE! So pray pray pray and believe believe believe that all these things will come to pass. The price has already been paid on a cross by someone else who was so undeserving of the brutal attacks on HIS body…but I am so thankful HE paid the price anyways so that we could have LIFE! I know how hard I struggle to watch Bailey fight this horrible disease that she did nothing to deserve and it really makes me stop to think about how God must have felt to have to watch his only Son die on a cross…something he didn’t deserve to save the lives of so many undeserving people. I can’t imagine how his heart must have been broken into a million pieces. How much HE really loves us and wants us to live. I know she is healed by each and every one of those stripes and I am believing in her miracle….I believe she will have LIFE!  NOTHING IS IMPOSSIBLE!!!

P.S. For those of you who are wondering, I am doing fine and so is Baby Reed. Of course I could use more sleep but what mother couldn’t right 🙂 We were able to do an ultrasound and our little fetus is growing and has a very strong heart beat. We are so very thankful for this baby and we know it will be a blessing to our entire family. Bailey and the boys are over the moon excited and cannot wait until our little addition arrives. We are expecting Baby Reed on November 16th. We will find out very soon what we are expecting and I will be sure to keep you all posted.

***Also a big thank you to every one that took the time to vote for Bailey and I on KATC’s mommy and me contest for Mother’s Day…We won and we couldn’t have felt more loved or supported. You all definitely made our day!!! And a big thank you to my BFF Misty Laviolette for secretly entering our photo for the contest! You are one in a million my friend!

Isaiah 53:4-5

“Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him and by his wounds we are healed.”

My little sunshine

April 18, 2013… Hit by a truckload of suck and the whirlwind continues!!!

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!!!

 

March 22, 2013….Well it’s that time!

So two cycles of DFMO down and it’s scan time again. Bailey and I will be flying to Michigan on Monday to complete her two month scans on Tuesday and Wednesday. We are praying like crazy that we will have clear scans once again and she will get to continue on the DFMO trial. This trial is amazing and has given us our life back! She is doing great, feeling great, attending school and just getting to be a kid!!! I will keep you all posted as to how our visit goes 🙂 We are anxiously excited because we know by HIS STRIPES SHE HAS BEEN HEALED!!!

And for other interesting news…these scans are also making me anxious because this is the first time that Bailey and I will get scans done without Mimi or Daddy Cody with us…normally I wouldn’t be freaking out but of course this time I am. You may ask why would I freak out after three years of doing this every 2- 3 months ( I should have this routine down by now)…well you see it is very simple…just this week we found out that our little family of 5 will be growing by 2 feet!!! We are expecting!!!! With that being said, Bailey will have to conquer these scans without her mommie in the same room standing only feet away from her for the first time in 3 years…and that has me feeling pretty horrible right about now….but in pure Bailey fashion her response was ” Mom it’s no big deal…I am grown up now so you don’t need to worry…just make sure you are watching me through the window” …LOL Gotta love my little courageous girl….never ceasing to amaze me!!!!

So please keep us in your prayers…pray for clear scans…pray for a smooth trip…and pray that we will get to come back home where we belong with a happy healthy cancer free little girl!!!! I’ll be sure to keep you all posted…NOTHING IS IMPOSSIBLE 🙂

March 4, 2013…. Three years and counting :)

So as many of you know today marks three years since I heard one word that would drastically change our lives forever. Three years ago I was told my little girl had a 30% chance of surving this one word. Three years ago, because of this one word, I was told she may never walk again, she may not live to see her next birthday, she may never feel her lower extremities again, she may never be able to go to the bathroom on her own again, she would probably be confined to a wheelchair, etc, etc…..the odds she was facing was nothing short of devastating and seemed pretty much impossible. Even if she did pull through, this one word would forever be a part of our lives… as long or as short that may be.

What they didn’t tell us three years ago is that because of this one word we would really start to understand the meaning of what it is to really LIVE. No one could ever be prepared for how drastically your life can change all because of one word. Despite the advice from doctors, nurses, blogs of other patients, pamphlets,etc….you are never truly prepared for life with this one word. It is a very humbling experience as you go through the emotions of each phase of the journey. The absolute heart break you feel at times seems almost unbearable, but then there are those times that your heart literally could burst from all the joy and happiness you feel….watching her breathe on her own after hours of surgery, watching her stand on her own for the first time, watching her take her “second” first steps, hearing her tell you how much she loves you after you have been cleaning her puke because she has been so sick from the chemo she is receiving, watching her comfort other kids going through the same thing she is while being is hooked up to numerous bags of chemo, waching her explain to clueless children and parents why she no longer has hair or why she is in a wheelchair, seeing her smile and laugh as you are shaving her hair into a mohawk because the chemo has made it fall out again for the 4th time, seeing her order nurses and doctors out of her room because she doesn’t want to be bothered then turning to me and saying “momma please come lay with me so I can rest”, seeing her take handfuls of pills when only a few shorts years ago she couldn’t even swallow one pill, seeing her keep up with schoolwork while laying in a hospital bed becasue she doesn’t want to fall behind, watching her celebrate holidays at a Ronald McDonald house thousands of miles away from home with a smile on her face because she understands what is necessary to keep her here with us, etc, etc, etc.    Your patience is thoroughly put to the test as you learn to rely on complete strangers to save the life of your child. People you have never met are now literally holding your child’s life in their hands. There are days when you feel complete sadness for the hand you have been dealt in this life, but then there are those days that you couldn’t picture life any other way. You realize what is really important in this life and some of the sadness comes from wishing you had realized these things much sooner.

Day to day living is so much different now. Three years ago we were not sure how to make it through the next hour much less the next day. As I reflect on where we are now compared to where we were three years ago…I am overhwhelmed. It hit me like a ton of bricks on my way to work and of course the water works started (as some of you know I am really not an emotional person whatsoever but how can you not get emotional today when you really realize what an amazing little girl you have!). Not only is she still here with us but she has surpassed almost every obstacle that seemed impossible three years ago. She is really LIVING life and living it to the fullest! My little girl has beat this awful disease 4 times in three  years…How awsome is that! I am truly in awe of her strength, her will to live and mostly her faith. She believes in her healing and she believes that God will see to it that she lives a long and healthy life….what more could I ask for in this life than to have a little girl with such big faith like that!

So today as always, I will not allow that one word to steal our joy. We will not look at this day as the day our lives forever changed for the worse….we will look at this day as the day we really started living. We will give thanks and praise GOD for how far He has brought us. We will celebrate three years and counting … because we have faith that so many better things are in store. NOTHING IS IMPOSSIBLE!

 

 

February 5, 2013…. CLEAR CLEAR CLEAR!!!!!!

Praising GOD for miracles, healing and a healthy future! Yes we got fantastic news 🙂 All of Bailey’s scans are clear and she can continue taking the DFMO she started in December. I really do think her clear scans were unexpected by the team in Michigan, despite Bailey constantly telling them that we were not going to be staying for an extra week and we were flying home over the weekend because we have been praying for that spot to go away and she has been talking to her spot to tell it that is needs to go away… lol! That little girl has faith that can move mountains!

So we arrived in Michigan on Tuesday and had scans Wednesday and Thursday. On Thursday the team said that Dr. Sholler was out of the office and would discuss the results with us on Monday when Bailey was due to be in clinic to start the chemo regiment that was planned to get rid of that spot near her liver. (Keep in mind they only put her on “compassionate” use of DFMO in December to keep her stable while we came home to let her counts finish recovering, not to clear that little spot). Well being the impatient momma that I am, I begged them to have Dr.Sholler call me on Friday if possible whether good or bad and give me the results because waiting until Monday is just plain torture…let’s be honest! Anyways, I got a call from Dr.Sholler’s assistant Shannon bright and early on Friday morning and I just knew it was going to be good! She started off by saying well we normally don’t do this but I got the ok from Dr. Sholler to read you the results of Baileys’ scans, are you ready? I said yes I am sooooo ready…she began reading “No uptake here and no uptake there and no uptake shown here and stable there”…so I said ok can you get to the liver part (because that was the area that still had a spot in December that was going to cause Bailey to have to do chemo) so she says”MIBG reading shows liver is normal and no lesions of focus can been seen at this time, the spot is resolved”…well praise GOD because only HE could have done that! I literally could have done a cartwheel or screamed at the top of my lungs when she read those words to me. My little girl is clear again! She then continued to say “we are going to cancel your appointments in clinic for next week since the chemo is no longer needed and you guys are free to go home as soon as you can…continue on the DFMO and we will see you in two months for scans”. Just the news we have been praying for! Her miracle is happening 🙂

So of course since it was bright and early, Bailey was still asleep so I decided that this is definitely news worth waking her for. I slowly kissed her forehead and said wake up Bay, momma just got a call with your results. As she lazily opened one eye she said ok what are they, so I preceeded to tell her that everything is good, she is clear and her little spot is gone…she says”Momma I already knew it was gone because I told you we have been praying over it and I have been talking to it telling it to go away so can I go back to sleep now”…wow! Only my little girl would be so nonchalant about this wonderful news…not because she doesn’t really care and not because she was that tired…no the reason she was like that is because of her faith! She knew that she had asked GOD to take it away and heal her and she truly believed that HE would…and boy did HE ever! Right there in that moment my little girl taught me yet another lesson in life….When you ask GOD for something don’t ever doubt that it won’t be done, because it will. HE hears our prayers, our cries and HE knows the desires of our heart. When you put your whole heart and trust into HIS promises you have nothing to fear. HE will protect and provide. Although I know this and I am the one that preaches this to her over and over again, her words hit me like a ton of bricks…Ask and you shall receive…it is as simple as that!

With that being said we are home…right where we belong! Bailey continues to take her DFMO but is officially off the “compassionate” use and is considered to be on the trial for maintenance therapy. As long as her scans continue to be clear, she can take this medicine for up to 2 years or longer. She has done really well with the DFMO and has absolutely no side effects. Her counts are still coming up but she hasn’t had to get a transfusion in almost three weeks so we are praising GOD for that as well. She has been through so much over the past 6 months getting the 2 MIBG therapies back to back, it feels really good to see her feeling so good and just being a kiddo again. With the DFMO she will only be required to do blood work once a month so let’s just say I am not sure how we will handle having all this free time away from hospitals but we are so looking forward to figuring that part out!

So thank you all…thank you for the prayers, the support and for believing in faith with us that she would be clear again. She will live a healthy cancer free life in Jesus’ name. I will keep you updated on how we are spending our time at home and I promise to post pictures too. Her hair is finally growing back and she is still making lots of progress in terms of standing and walking with her walker. She really is amazing 🙂 Please continue praying that she is healed once and for all…NOTHING IS IMPOSSIBLE!

JOB 9:10 “He performs wonders that cannot be fathomed, miracles that cannot be counted”

My Little Miracle

 

January 28, 2013… By Jesus’ stripes she is healed!

Isaiah 53:5 “The chastisement for our peace was upon Him, and by His stripes we are healed.”

Well it is scan time again. We are leaving for Michigan tomorrow morning. I am so anxious to see what the results will show. Bailey has been doing so good with the new DFMO medicine she has been taking since December and I am praying like crazy she will be able to continue with this treatment. The plan is to do scans on Wednesday and Thursday, get results then decide what’s next. If scans are clear we will get to come home immediately and she will continue taking the DFMO with scans repeated every three months. If the little spot near her liver is still there or any new spots appear, she will have to stay in Michigan and get 5 days of chemo the week of February 4th along with Nifurtimox then we will get to come home to recover before having to repeat chemo again. Of course we are believing in CLEAR scans and NED (No Evidence of Disease) status again!

Bailey has been doing fantastic these past two weeks. Her counts have started to recover to the point of not needing any transfusions. She has not been this way since August of last year so this step in her journey is very welcomed. Her immune system is still pretty low so she hasn’t been able to attend school but hopefully in the next few weeks (if chemo is not needed) she will finally be able to go! Thankfully she has been keeping up with all of her schoolwork with Mimi (during the day while I am at work) and she made Honor Roll! I am so very proud of her….sometimes it is so hard for me to wrap my head around this amazing little girl I have. She has been through so much more than most people ever endure in a lifetime yet still she smiles, laughs and finds joy in the little things. She really is my hero!

Please say some prayers for us as we travel and of course for clear scans. Our faith is in the scripture and God’s promises…I know her healing will come to pass because He has already paid the price on the cross. The facts and/or our circumstances may change, but HIS word and HIS promises will always remain. He has already paid the price for Bailey’s healing so we are declaring that she will live a long and healthy life free from this horrible cancer. She will be a testament to His promises. We will not fear what our future holds because we are putting our trust and faith in the ONE that holds our future. This little girl of mine has such big faith…she was meant for great things and she will fulfill God’s will for her life….despite what statistics say. Thank you for your continued support and prayers…NOTHING IS IMPOSSIBLE!

My Sunshine

January 11,2013….. The waiting game :)

Ecclesiastes 3:11 “He has made everything beautiful in its time…”

So we are still home…yes home home home!!!! Love the sound of that. Unfortunately Bailey’s counts are still pretty low and she is still requiring transfusions so the decision was made to wait until the end of January to head back to Michigan for scans. I was pretty happy about that decision to say the least…for starters it will allow the DFMO more time to work on getting rid of that one spot near her liver so hopefully when we repeat the scans there will be no reason for her to have to do the chemo regiment and she will be able to continue on the DFMO that has been an absolute dream come true in our cancer world….secondly we could really use some time at home without the frequent hospital trips as we have been having to do over the past five months….time to just be together and have our little girl feeling good and having fun. So the plan is to head back to Michigan the last week of January for repeat scans and then decide what the next step will be.

Our holidays at home were very difficult to say the least…everyone and I mean everyone in our household was sick…starting with the twins, then myself, then Bailey and finally Cody. Definitely not the way we had planned our days off but of course we have learned to always expect the unexpected. Thankfully within a week we were all feeling much better but of course it was time for mommy and daddy to go back to work and the kiddos back to school…except for Bay who hasn’t been able to attend at all this year (praying that will change after our trip at the end of January). With her low counts she isn’t able to be in a classroom with other children right now due to her low immune system, but thankfully that is recovering…very slowly…but recovering all the same.

So not much new to report but I’ll take that anyday 🙂 Always remember NOTHING IS IMPOSSIBLE!!!!!

Wanted to share something another NB mom wrote…so fitting for our situation and exactly how I feel no matter what we go through:

“If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you…

If God had told me, “This soul would one day need extra care and have special needs”, I still would have chosen you…

If  He told me, “This soul may make your heart bleed”, I still would have chosen you…

If He had told me, “This soul would make you question the depth of your faith”, I still would have chosen you…

If He had told me, “This soul would make tears flow from your eyes that could fill a river”, I still would have  chosen you…

If He had told me, “This soul may one day make you witness overbearing suffering”, I still would have chosen you…

If He had told me, “All that you know to be normal would drastically change”, I still would have chosen you…

Of course, even though I would have chosen you, I know it was GOD who chose me for you” – written by Terri Banish