Hello Team Addie, long time no talk :)
Happy Mother's Day.
I figured there is no better day than today to post about how amazing our God is and how amazing our Addie girl is, I am beyond blessed to be her mother.
May is a very very big month for Team Addie. This time three years ago we spent Mother's Day in room 31 at the University of Iowa Hospitals and Clinics. It was THE hardest, most devastating time in our lives. We were there with our precious 2 year old who was having severe back pain and were being told that she likely had cancer. Up to that point, we were living a perfectly ordinary/normal life with our happy, sweet and ever so sassy 2 year old (Addie), our newest and most precious 4 month old (Emma), and a 5 year old who couldn't wait for kindergarten round-up (Grace). In the blink of an eye, our world was ripped apart. At the time, I felt like all was lost, we were told Addie had a large tumor along her spine that had invaded her spinal canal and was constricting her spinal cord. I remember lying in the hospital bed with Addie while she slept and just crying and praying, Lord Jesus please let me be able to take her home again, please let her leave this hospital room.
On May 15 Addie underwent surgery to have a Hickman catheter placed (her tubes) because the team felt strongly that the tumor she had was cancerous and at that time they also did a biopsy of the mass to determine what it was. I remember our beloved surgeon, Dr. Potter, coming out after her biopsy and saying that he barely got into her and the tumor came pushing out. The day of the biopsy marks the day of the "official" diagnosis, so on May 15 our daughter was diagnosed with Stage 4 Neuroblastoma. Her biopsy revealed she had the most aggressive form of the disease with an N-MYC amplification, a genetic mutation that suppresses the bodies defense mechanism to suppress tumor growth. Her scan also showed that her cancer had spread to numerous bones throughout her body and to her bone marrow. We were absolutely heartbroken but encouraged that our team felt that Addie had a chance. Oncologists are definitely not optimists and rarely sugar coat anything, but fortunately our team remained very positive and re-assured us there was hope. I can still remember our oncologist, Dr. O, coming into the room and the first thing she said was, "we have gotten a lot better at this one!"
We spent Mother's Day 2014, Reed's 36th birthday and our 11th anniversary in room 31 with our precious 2 year old who was having her first round of Chemo. I was nursing Emma, she was so sweet and really brought so much happiness to that room. We tried like crazy to have Grace their with us as much as possible, I remember driving back to take her to kindergarten round up. During that time we met nurses, doctors, and staff that over the next year and a half would become like family to us. Oh how we love and adore all of them. They made that hospital feel like home. Our nurse practioner, Mary Schlapkohl was an absolute Godsend and I can not ever tell her how much her presence, knowledge and sincerity meant to us. She will forever hold a place in our hearts, among many others on our team. Jessica will forever be like a sister to me, she was home whenever we were there and that Naughty Veronica could always get a laugh out of us.
I look back at that time and there is definite sadness but what really stands out is how amazing our God is!! He was there and looking back it is so clear that he shared in every single moment there with us. He saw Addie and our family through all of it.
After just one round of chemotherapy, Addie went from having severe pain and on continuous morphine to almost back to normal. At diagnosis, she was unable to bend at the waist and her neck was calked to the side because of how large her tumor had grown. After that first round of chemo, we took her home and she could run, play, bend however she wanted and she no longer needed pain medicine. That was Jesus!! That is a miracle. I remember driving her to Iowa City and she was writhing in pain in her car seat and after one round of chemo she was PAIN FREE
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After 2 rounds of chemotheraphy Addie shocked the doctors because her bone marrow was clear!!! That just wasn't something they expected to have happen, it was Jesus!!! Yet another miracle. After that round her tumor had shrunk by more than 50%. We said good bye to her hair after that round and we still have yet to see that :) but funny how hair means nothing if it is a sign your child is winning their battle!!
What Addie endured and what our family went through really is a blur, I almost have to force myself to shuffle through those memories, it is like my mind just decided to lock them up. There was a lot of really bad stuff but through it all we remained a family, we became focused on what really mattered instead of all the stuff that doesn't, we turned our eyes upward to Him and lived each day. We literally lost all sense of control and had to take life one day at a time and sometimes minute by minute. Through it all we were wrapped in the arms of Jesus and there is no better feeling than that. I would never ever ever wish for my girl to have to endure that pain again and I would never wish for my family to have to embark on that journey again but I am so thankful for having our eyes opened!! How quickly our eyes can once again become closed. It is something I have to work to do... focus on HIM and not on myself and my own desires. There are days I am so disappointed in myself, my weaknesses, my anxieties, my old worthless tendencies and my lack of focus on what is really important.
Three years ago my baby was diagnosed with Stage 4 cancer and today she is here, cancer free, and as perfect as she could ever be!!! To say I am thankful doesn't even graze the surface.
May 17 marks 18 months that Addie has been done with her cancer protocol, 18 months off treatment. May 17 also is the day that Addie has kindergarten round up!! This is amazing!! My girl, kindergarten!!! My prayer going through treatment was Lord Jesus please let me take her to kindergarten, please let her grow up, please let her experience life!! He has answered my prayers and I am faithful that He will continue to do so. I am continually reminded that we must rejoice and be glad, be thankful for this precious time we have been allowed to be together as a family living our "normal" life. We can't ever sit back and be blind to what could happen, Addie will never be in the clear per say, but everyday she spends cancer free is one more day closer to her being cured. We will enjoy every single day, because they are a precious gift.
Thank you Jesus for this beautiful girl, for letting me be her mother and for seeing us through the darkest time in our lives. Thank you for shining your light into the darkness. Thank you for the wonderful people you put into our lives, thank you for the medicine that saved Addie's life. I pray that the research will continue and a cure will be found! I pray that no more children will have to die from this terrible disease. I pray for Hazel, Brooke, Isla, Malcolm, Evie, Dayton, McKenna, Victoria, Brayden, Preston, Aubrey, Jay, Taylor, Robyn, Lily-Mae, and for Parker... total healing, no more cancer, no more treatments, freedom from their illnesses, and for them to have a childhood!! Please God let my girl be cancer free for an eternity, please let us never hear again she has cancer and please Lord Jesus let their be a CURE!
We love you Team Addie, please continue to pray for Addie and for all the other children and families affected by cancer and other life threatening, chronic illnesses. Please pray for a cure!!! Please pray again that Addie will be cancer free for an eternity!!
This Momma's heart is overflowing.