March 18, 2014…. Only takes a mustard seed

Has it really been 4 months since I last posted on here….geez! Guess you can tell little Ellie arrived and our lives have been non-stop since then. We have had so much happen in the past 4 months I am not even sure how or where to begin to fill you all in. I guess I will start with our precious Ellie Elizabeth…our sweet girl made her debut into this world on 11-12-13…what a cool birthday right?!? I went in on 11-11-13 to be induced but it seemed that I was already in labor and just didn’t realize it! So needless to say no induction was necessary and little Ellie made her appearance at 9:45am on 11-12-13 weighing 9lb 3ozs (OUCH!!!!) and was 20-1/4″ long! It was love at first sight!!! Seriously, our little Ellie took our breath away! She was beautiful and perfect in every way. She is such a blessing to our family. She is so loving and is such a good baby! She rarely cries but when she does you know she is hungry, tired or needs a diaper change…other than that we never hear her unless it is the sounds of her belly laughs that bring us all to laughter! Nothing in the world like the sound of a baby laughing! Ellie is so much like Bailey it is really scary. Most times I catch myself calling her Bailey because I am taken back to when Bailey was little…she is the spitting image of Bailey! The kids are enjoying her so much…they love to make her laugh and are very protective of their little sister. Bailey is such a HUGE help with her! She is so helpful when it comes to bathing her, changing her diaper (as long as it is #1 and not #2) or watching her when I need to get things done around the house. Seth and Aidan love her so much and are helpful as well but they are more interested in seeing what they can do to make her laugh and will NEVER volunteer for diaper duty (although I can’t say I blame them lol). We really love her to pieces and cannot imagine our life without her! She completes our family of 6 in more ways than one 🙂

On to my sweet Bailey…so much has happened since my last post in November. If you remember, she was on the chemo chyclophosphamide/topotecan for 3 days every 4-6 weeks and was handling it very well. So after her cycle in January it was time to do scans again. Well let’s just say scans did not show us what we were hoping they would. Unfortunately the scans showed that Bailey not only progressed but it was pretty aggressive. With this news came some pretty tough discussions and even tougher decisions that needed to be made. While we were very forunate to have been able to keep her on that chemo regiment for almost 8 months with some improvement and stable scans, our time with that was up…we now had to decide what to do from here if anything. Her oncologist suggested to me that perhaps we needed to start thinking of ways to slow down the progression and enjoy what time we had left….yes I did say “what time we have left”. Let’s just say that discussion did not go over well with this momma bear. As I am on the phone with him, I am having somewhat of an outer body experience with myself as I cannot believe we are acutally discussing options to only prolong her life for a few more months instead of options that are aggressive to get rid of this cancer crap once and for all…needless to say I broke down. He mostly talked and I mostly cried. No parent should ever have to hear those words “enjoy what time you have left with her.” After what seemed like an eternity of me pleading my case as to why this will not work for us and why she needs to continue fighting with aggressive treatments, we hung up and I just sat there and thought to myself…this is not the end…no one will tell me when it is time to throw in the towel! My little girl is far from done fighting this nasty freaking disease and we will not give up no matter who or what anyone says…we have been here before and we did not give up. God always provided and we will trust him to do the same. Well a few hours later my phone rings and it is her oncologist again telling me that he will do whatever I want to do for her…if she wants to keep fighting he will help us do just that…(once again God works on our behalf)! So as the next few days went by I became a research rat to say the least…I spent every spare moment I had researching every open and upcoming trail for neuroblastoma. Thankfully we found a few that she might be eligible for and we are working on getting the necessary paperwork, etc to get the ball rolling.

In the meantime I called our old oncologist, Dr. Kanter, who moved to South Carolina at the end of last year. I guess you could say I needed someone who knows Bay and who knows me to tell me I wasn’t crazy…I needed to hear that what I wanted for my little girl was not unreasonable and wasn’t impossible…I needed someone to give me hope! I needed someone to say, yes it could work…things can turn around for her because we don’t know what the future holds…we don’t know when her miracle might unfold so until then we do need to keep trying! Thankfully God knew I needed to hear that and HE answered my prayers…after talking with Dr.Kanter, who took care of my sweet girl for 3-1/2 years, she agreed that we need to keep fighting…she said “Brooke she isn’t finished fighting, I don’t believe this is the end for her!” We discussed possible options that might work to help get the progression under control for now until we could get her on a trial that might possibly help to clear her again. We decided that Bailey would go up to South Carolina to meet with Dr. Kraveka, a neuroblastoma specialist, that heads alot of Dr. Sholler’s trials.

Upon arriving in South Carolina I had such a peace! After seeing Dr. Kanter again and meeting with Dr. Kraveka, I knew God sent us there for a reason…HE wanted to show us that we need to keep pushing forward because HE is not done with Bailey’s story yet! Originally when we planned our trip to South Carolina, we planned on being there for about 10-14 days…well after the CT and Bone Scan results came in, those plans changed! Dr. Kraveka called me on the Saturday to discuss what the results of her bone scans showed and we were all pretty speechless!!! According to the results, Bailey’s bone scans was negative! NEGATIVE for bony disease!!!! How can this be???? Only four weeks before the scans showed bony disease in so many places all over her little body and now NOTHING!!!! Dr. Kraveka explained that even though the bone scans showed negative there may still be bony disease but that it is too small for the scan to detect which is why it showed up on her MIBG scan four weeks before…I on the other hand believe GOD is performing a miracle before our eyes! I know HE is working on her behalf and will give total healing to Bailey…until then it is our job to trust HIM and wait patiently for HIS plan to unfold! With that news, it was decided that Bailey could not do the targeted therapy we went to South Carolina for. We discussed doing a different chemo regiment, irinotecan/temodar with zometa, to see if this would stop progression and hopefully clear her…so back home we went…but with happiness and HOPE!

Bailey just completed 5 days of the new chemo regiment and we will rescan after one more round. She is doing ok and feeling pretty good despite some expected side effects. Honestly we can handle side effects, we can handle some not so good days…what we cannot handle is giving up! We are full of faith…always have been always will be no matter what! So until the scans show what we already know will come to pass we will continue on…trusting in God every step of the way!!! We know NOTHING IS IMPOSSIBLE and we will continue to live our life by this motto every single day! We choose to believe in her healing and we choose to believe she will have a long healthy life!

Luke 17:6 “If you have faith as small as a mustard seed…”

Ellie Photo 3 Ellie Photo 5 Ellie Photo 6