A much needed update...
Addie had her work up this week. On Monday she had a CT and MRI, both of which looked normal, no growth in her primary tumor site :) YAY!! On Tuesday she was due to have her injection for her MIBG scan (scan specific for Neuroblastoma), GFR test (kidney function) and eccocardiogram. She had her GFR and ecco that morning but due to the dense fog in Cedar Rapids the injection for her scan didn't come in. Nuclear Medicine informed us that we would have to reschedule her bone marrow biopsy and MIBG scan. The following morning I received a call from Mary, our nurse practitioner, and she informed me that Addie's heart looked good but her kidney function was poor. Addie's baseline GFR reading was 140 and currently she is at 64, due to that Addie doesn't meet the minimum requirements at this time to move onto antibody therapy. Mary recommended that we recheck Addie's kidney function in a month and at that time hopefully it would have improved enough to start antibody therapy. Mary and our kidney doctor are very hopeful that her kidneys are on the mend. This was definitely not news that I wanted to hear but at the same time I feel so incredibly thankful that we have the ability to test these things. Reed and I sat down with Mary on Monday and discussed all the awful, difficult things about antibody therapy and she told us how worried she was about Addie and her response to this treatment. We were told once again that the treatment we would give our daughter to save her life could also kill her. A major side effect to antibody therapy is fluid retention and with weak kidneys Addie would not fair well. I am so thankful for this test and having a clear picture of how here kidneys are functioning because had we taken her into antibody without this test or with a false positive reading (that they sometimes do by overloading the patient with fluid the night before) Addie would not have done well during antibody therapy and she could have died. We need healthy kidneys to go into antibody therapy!! Antibody therapy is an essential aspect to Addie's treatment, it has drastically changed the outcome of Neuroblastoma... research has shown that it has taken the survival rate from a dismal 40% to near 65%. These are still not the numbers a mother with a child with cancer wants to hear, but far better than before. As I have said a million times before I firmly believe Addie surviving this will be a miracle and entirely in the hands of God. This cancer doesn't mess around and it doesn't prefer its victims alive... it is heartbreaking how many children have died and continue to die from this awful disease! PLEASE say lots of prayers for Addie's kidneys. We need her organs strong and healthy in order to go forward in her treatment and in life. Please Jesus heal my sweet girl. Please LORD let this lag in treatment not be a set back but merely a pleasant vacation away from treatment.... let it be quality time to spend together as a family, living "normal" life and enjoying our healthy little girl. Please don't let her cancer grow during this time, please let it never grow again!!! There are LOTS of things that I have to stop and be thankful for even in the midst of some not so good news... It is obviously disappointing to hear that Addie's kidneys are not "normal" but incredibly thankful that her kidneys were so strong to begin with. Both Addie's kidneys and heart were AMAZING pre-Naughty Randall, thank GOD for this because it made her that much stronger to fight the POISON we were forced to pour into her. I am also hopeful that Addie's heart is good and if we can get her kidneys back to normal her heart will never again suffer. Addie's blood test this time showed that her kidneys are improving, the one number they watch for has been elevated for months and has just recently come back down, this is a very positive sign that her kidneys may be actually improving. Her kidney doctor feels that if we had completed a GFR just a month ago, that number would be even less than what today showed... that is good news!! The other thing that I saw God's hand in, (an obvious, tangible sign) was that she didn't have the injection for her MIBG scan, it just so happened that the injection material didn't come that day due to FOG, when it has been the nicest weather we have experienced in months... praise Jesus for that. That dye has to be processed by the kidneys and also is irreversible once injected and it was something that Addie didn't need if she failed her kidney test, which she did. It would have just been an additional radiation exposure. The scans have to be done within 4 weeks of antibody therapy or they are not eligible... YAY, to avoid that excess radiation. This is proof that He is in control and watching Addie and her journey so closely... He knows the way and is holding her hand for every step of it!!
It is nauseating to not know what her MIBG scan will show, as sick as it makes me to wait for the results it is so comforting to hear them when they are favorable. The rest of her life I will experience this nausea... that stomach ache that never really goes away, that pit in your stomach when something just doesn't feel right! I should name that feeling, every Momcologist knows the feeling! There is so much fear in the unknown, but I find so much comfort in knowing that it is not unknown to the One who LOVES us more than any other. It is unbelievably comforting to know that He never intends to harm us and the way He has made is perfect and specifically designed for us! I get scared when I allow my mind to unravel or when I lose sight of Him... I wish I could pray away all my worry, fear and anxiety, I wish I could go back 10 months and make this all disappear. I wish so badly my daughter didn't have cancer and we didn't have to pump her body full of TOXIN in hopes of saving her life... there are so many things that I wish. Those wishes don't get me anywhere, they make me sad and hopeless. The hopes I have for her future bring me happiness, the faith that I have in His plan brings me JOY! I have hope that Addie will live a normal, healthy life. I hope that she will make me a Grandma someday and hope that I will never again hear that she has cancer. The Lord wants us to have hopes and dreams... BIG ONES. I am dreaming big because our God is BIG and can do amazing things!!! Here is to another month with my girl, with her beautiful smile and vibrant personality, her beautiful brown hair growing in and her eyelashes that go on and on for miles... Addie Lynn Brenden, I LOVE you to the Heavens and back! Thank you Jesus for this amazing little girl!
I found these to be incredibly inspiring and uplifting!! Thank you Jesus for constantly reassuring me!!
