Thursday, April 23, 2015

Well Overdue

I hope with my major delays in posting we still have a Team Addie... Life has been so "normal" I actually find it difficult to get myself to post, I don't know why I feel that way but posting at times takes me back to some rough moments we have had together as a team!!  I thank all of you for being with me in those rough moments and for praying us through it all.  I feel so blessed to be a part of this team!!  I need to be better about posting when things are perfectly normal :) because those are the times I need to share my JOY and THANKFULNESS!  All of your prayers and His faithfulness have gotten us to this point, thank you ALL!

We have been home since December 24, 2014... not a single inpatient stay since then!! Can I get a hallelujah and praise Jesus on that!!  I have found myself looking at pictures from Christmas time and what a true miracle it is to see how far Addie has come in four short months.  It has been since the middle of January that we have done anything to "treat" her cancer... Talk about mixed emotions on that, a part of me is overjoyed that she has had time to rest and the other part of me is so anxious that something could be growing.  I trust that His timing is perfect and things will be exactlty as they are suppose to be!  The battle that goes on in my mind is constant and sometimes exhausting... pushing aside all the fear and anxiety and focusing on the joy that each day brings is a constant struggle for me, but fortunately I have Jesus and He helps me through each day!!!   The more I focus on giving thanks for the present the less I find myself worrying about the future.  I try and remind myself that no day is guaranteed for any of us, and He has a greater plan for all of us, and that His plan is perfect.  I wish there were no doubts in my mind, I wish I could just believe without a doubt that Addie would be ok and rise victoriously from all of this... I hate more than anything the doubt that lingers in my mind!!!  I pray Lord that you would take all that doubt away!!  I constantly remind myself to enjoy each and every day with my sweet Addie girl because they are so wonderful! 

We have received some amazing news over the past few weeks.  Addie had her MIBG scan (Neuroblastoma specific scan) which is the most nauseating of them all and the results showed that there was NO evidence of disease!!! WOOT WOOT, NED baby... that was an amazing day, so thankful for clear scans once again, praying for a lifetime of clear scans!!  She hadn't had that specific scan since October and I think we were all a bit anxious about what that would show, but praise Jesus, it showed nothing!!!  Her bone marrow biopsy, eccocardiogran, CT scan and MRI were all normal as well!  Her kidneys are also doing better and at a level now that we can move forward with the next phase of treatment.  They are still not in tip top shape but are definitely on the road to recovery.  We had some delays with the next phase of treatment due to some insurance coverage issues but thanks to Woolverton's insurance agent, Josh Budke, we are now approved and ready to move forward.  What a blessing he was in getting the information in the right hands, thank you Josh, you were an absolute Godsend.  A special thank you also to Mary, our nurse practitioner, for going to battle with the insurance company for us!!  It is very obvious to me now that the delays we have been facing getting ready for antibody therapy have been purposeful, and have been because of Him... Addie needed time to heal, her body needed time to rest and recover and He gave her that time.  Between Mary (Our nurse practitioner) pushing the team into waiting, her kidney tests, the mishap with the MIBG injection not arriving, and the insurance issue it was clear that up until this time Addie was not ready for antibody therapy and He made sure to not make it possible for her to get that until she was ready.  God is so GOOD!!  I will say it once again, He has got this... He has her and is holding her hand through all of this!  

I will try and post some detailed information on antibody therapy when I get some more time and also let you all know what our treatment calendar looks like.  It is going to be an intense summer, we start on May 18.  More details to come, I will leave you with a few pics of our girl... That hair is getting pretty wild!!