May 30th Addie Update

Update... Our first week home was almost a success, Addie had been feeling so good, only wanted to be outside and play, play, play!! We took a little turn last night and she started running a fever... Which was expected at some point over the two weeks we were home, more of a surprise if she wouldn't have! So we are now at Covenant (praise Jesus we can be here and not all the way in Iowa City) they have been wonderful here!! She is on close watch and visitors are limited... Basically just Mom and Dad! She is tired and definitely not feeling good, praying that she will perk up quickly and her counts will come back up so we have to spend the least amount of time here, but likely a week due to how low her counts are! We also got another piece of bad news... Seems that is all we get with Naughty Randall, he is the worst of the worst, which we already knew and expected. Her NMYC was amplified, which they expected and is pretty typical for stage 4 Neuroblastoma!! What that means is that her tumor is aggressive and much more likely to return!!! The good news... I try to always find that in all this yuck, is that she has been virtually pain free since the chemo, rarely have had to give her any pain medication!!! That is a great sign that things are shrinking!!!! Pray, pray that our little sweetheart stays tough and kicks this thing so hard it never returns!!! Prayer and hope is all we have during this time... please Jesus take this away and away forever!! Thanks for all your love and support!!!

Home

Addie is doing so well... Better than I could have ever imagined considering what she has already gone through!! She went from the healthiest girl (never needing to have an antibiotic) to already over 50 beads on her Beads for Bravery necklace! She is such a strong willed, happy girl! Since we have been home all she wants to do is be outside... two weeks in a dark hospital room explains why! Home has been hard for Mommy. It feels so normal and life is so far from normal... I have to remind myself to take it day by day and remain hopeful that our Heavenly Father will heal my beautiful little girl and take this all away!! Why did this happen?! I will never understand why but I have to trust that we will all come away from this horrific situation a better, happier family with three perfectly healthy girls!! Please Jesus let this be the case, let me watch my baby girl grow up... I can't imagine a life without her, nor do I allow myself! A life without my Addie Bean is a life that I do not want to live!! Thank you everyone for all of your prayers and support!! Thanks for the lovely gifts for the girls and the gift cards, money and food! We are so blessed to have such wonderful friends and family!! Please continue your prayers for our sweet Addie... Lots of love ❤️

May 24th Addie Update

Should be coming home today :) first round of chemo is in the books!! She has been doing so good... Just our normal wild woman with a pole attached "the robot!" She is getting a transfusion today, so she will only be wilder :) It is scary and overwhelming to come home but we are so anxious to have our family together again!!! Life will forever be different but different isn't always bad... We talked with a man the other day whose son was diagnosed last year with stage 4 Neuroblastoma (just like Addie), whom I am positive was sent here by God to talk with us... He brought us comfort and peace with Addie's diagnosis and encouragement that life doesn't get worse but better, because you have such a better appreciation of life and your family!! Please continue to pray that Addie stays strong and her spirits stay up and mostly that "Naughty Randall" (the Neuroblastoma) will be gone forever!!!! Thanks for all your love and support!! Cedar Falls here we come :)

May 20th Addie Update

Treatment has officially started and she was riding her bikes all over the halls afterwards and dancing to the "banjos" :) that is our girl!!!! It is going to be a long road... 6 rounds of chemo along with surgery, possible radiation, stem cell transplant and an antibody treatment!! We are confident that she can do it and we will walk away from this hospital cancer free!!!! Please everyone pray that her body can handle the treatment and that the cancer responds favorably and quickly!!! We want this awful thing gone and gone forever!!!! Please keep the prayers coming and keep our little fighter fighting!

May 19th Addie Update

We didn't get the final diagnosis yet... Should come tomorrow! Addie had a bone scan today and it showed that she does have bone involvement! She woke up from sedation pretty angry this time and had the worse back pain we have seen... Morphine has worked its magic and she is comfortable once again! We want to thank everyone for the continual thoughts and prayers and all the wonderful messages we receive!! Please keep praying... One more night of prayers for NO n-myc amplification!! We met with the head of the pediatric oncology unit tonite and reed and I both got a sense of peace in the midst of all of this awful chaos!! He had so many positive things to say about Addie and about the treatment for Neuroblastoma itself, he said that all of the findings for Addie are actually what they expect to find with this specific cancer and they are prepared to do anything and everything they can to fight it!!! He said he has seen little ones just like Addie conquer this awful disease and look back at it all like it was just a bad dream!!! Praying praying praying with all our might that our Addie Bean will be her own statistic and breeze right through this cancer thing!!! She can do it... Please Jesus wrap your arms around my little girl and give her strength and courage to defeat this!!!

May 18th Addie Update

Met with the doctor this morning and we should have final results tomorrow!! Please everyone keep praying hard that she will have the favorable form and no n-myc markers!! Please Lord bring us some good news!!!!

May 17th Addie Update

We are having a much better day today!!! She is feeling much more like herself... Still definitely sore but much more pep in her step!!! We need to kill this awful thing... Pray that her body stays strong and her spirit is even stronger!!! This weekend is the calm before the storm!!! She can do it, she is such a brave little girl!! Wish I could take it all away and it is heartbreaking but we have to trust that Jesus will wrap his arms around her little body and keep her strong... Here we come Cancer free!!! Back to herself... Entertaining everyone with loads of personality!! We love you so much Addie Bean, my heart overflows!! Mommy knows that "attitude" of yours is going to kick this awful thing in the butt!!! ❤️

May 16th Addie Update

We got some pretty bad news today... Addie's cancer is in the bone marrow which automatically stages her as stage 4. It is going to be a really long road for recovery but we have to trust we will get there! We are praying for some good news but it just seems to keep being negative! She is still pretty uncomfortable from surgery and from the mass itself. We are hoping that she will continue to perk up!!

May 15th Addie Update

We are through surgery and she did wonderful!! The tumor is malignant and they placed a port for chemotherapy. We won't know an exact diagnosis until next week at the earliest as to what type of malignancy it is! They are still leaning very heavily towards a Neuroblastoma! We feel very hopeful with the future treatment and very confident with the doctors here!  Please continue to pray... Pray specifically that she will not have the N-myc markers!!!!!!!! Thank you all for all your thoughts and prayers!  Sisters together at last ❤️

May 14th Addie Update

We had the MRI and CT today and have heard from the surgeons to see what her surgery will entail tomorrow!! They are doing a biopsy on her right side... Mid rib cage, they will do keyhole incisions to access the tumor and take a biopsy! The mass runs from her right lung to her spinal cord and actually enters her spinal canal but as of right now is not damaging her spinal cord! They will collapse her lung and take the biopsy, at that time they will do a "quick" test to determine if it is showing malignant markers (not a guarantee if that says it is malignant it is in fact malignant), depending on that, they will place a port in for future chemotherapy! They are also doing a bilateral bone marrow biopsy to see if there is any cancer in her marrow. The surgery will take anywhere between 3-4 hours and she will be in a fair amount of pain for about two days or so! The doctors seem to be leaning pretty heavily toward the diagnosis of a Neuroblastoma which has a wide range of presentation... From very aggressive and unfavorable to not that bad and a very favorable prognosis. The CT and MRI didn't show tumors anywhere else but the surgeon stated we would have to have additional imaging if it were a Neuroblastoma to see if it were elsewhere! But he said that not seeing any today on the scans was a good thing! We are very hopeful that our little spunky girl can get through it and live a very long cancer free life!! Please Continue to pray for her and we appreciate all of ur love and prayers!!!