‘I knew. She knew. God knew.’

November 5, 2020

I have had a few people asking for an update on our little Savannah. There are many who are wanting to know how she is doing and many that have had questions about Savannah’s diagnosis. It has been a week now since we got the call from her Oncologist with the final pathology. It has been 12 days since they took her into surgery to cut out ‘Mr. Bad Boy.’ In that week, we have still shed some tears. We have still had questions. We have still had moments where we can’t believe what just happened to our little girl. And we still feel an overwhelming amount of love and support from so many family and friends. We still are tremendously humbled by the miracle that God granted us in answer to so many prayers and in response to so much faith.

Savannah’s is a superhero. She has been such a trooper through the last few weeks of pain, strangers, testing, hospital stays and restrictions. But, despite being tough. Despite being strong. Despite showing the doctors she can do better than their plan, and leave the hospital sooner than we thought. Despite the answered prayers and support…. this still sucks. She still hurts. She still can’t do normal 6 year old things. She still can’t hug tight, laugh or even sneeze without pain. She still cries and yes, she even asks why. The nights are the hardest. The pain is hard to control after she has been active during the day and when she lies down, there is no comfortable position with the incision pain and the pain that is excruciating as her nerves are still waking up from the nerve blockers used in surgery. It has hurt deep, stabbing us in the deepest parts of her Dad’s and my hearts as we listen to her ask through tears, “Why is this happening to my body?” and “I thought that when they took Mr. Bad Boy out, I would be all better?” All we can do is touch her. Hold her. Sing to her. Pray with her. Promise her it will get better. And it is getting better.

Savannah’s biggest worry prior to having her surgery was that she might miss Halloween. She was so sad that she may not get to wear her costume and walk the streets of Alpine. But, miracle #205, our ‘Miraculous Ladybug’ Superhero made it home in time for Halloween night. Thanks to the kindness of neighbors, she sported an awesome wheelchair as her superhero mode of transportation. It touched my heart to watch her sweet Grandpa push her up and down the sidewalks and to hear the cheers and see the tears as neighbors and friends realized that this little miracle girls dream had come true…. ‘Mr. Bad Boy’ did not make her miss Halloween.

Savannah received so many pictures and fun things to celebrate Halloween in the hospital. Thank you to everyone who sent her a piece of the holiday that we have enjoyed here at home. She hung up her Pumpkin Patch from her 1st Grade Class at school and the other remaining hundreds of colored pictures and letters have been looked through and read one by one. We are so humbled by the kindness and love of friends, family, neighbors and even strangers. Thank you!!

There have been many questions about the pathology results that we received back concerning what ‘Mr. Bad Boy’ was. Why? Because it truly is a complicated diagnosis to understand. How could this have been growing for so long with no symptoms? How come we didn’t find it sooner with testing for the health issues she was having? Why is she not doing Chemo and Radiation if there are still malignant cells left behind in the 10% they could not remove? Will it grow back and will surgery be required down the road? Where did the tumor originate from? How does a tumor decide not to be malignant anymore? Was there any long term damage? And many more. We understand. We have been asking so many questions and we are still digesting some of the answers. What we do know is that God was in this and that this ugly tumor was meant to be found in His timing.

Now, to answer a few of the other questions that have come up:

1. What is a Ganglioneuroblastoma?
   • “A Ganglioneuroblastoma is a tumor that develops in your nerve tissue, from “ganglia,” meaning, “a mass of nerve cells. Ganglioneuroblastoma’s are intermediate tumors, ones that have both malignant and benign cells, or both cancerous cells and noncancerous cells.”
   • “These tumors are rare and primarily occur in children under the age of 5. They account for 10% of all cancers in children. In general, cancer develops due to a genetic mutation that allows cells to multiply out of control. The specific causes of Ganglioneuroblastomas are unknown.”
   • The images below help you visualize where in Savannah’s body this tumor grew. The cells grew and multiplied into a mass that grew into her abdominal and thoracic cavity pushing against her right kidney, adrenals and diaphragm. Once it had grown that direction it started to push it’s way into the vertebra. It did NOT originate from the spine itself, but from the ganglia outside of the vertebra.

2. When did it start growing? And why were there no symptoms?

It is believed by Savannah’s Oncologists that this tumor began growing very early in her life. We do not know what triggered the cells to mutate or the exact age that that happened. This type of tumor is usually found around the age of 4 or 5 after it has grown large enough to cause symptoms from effecting the surrounding organs.

For a couple years now Savannah has complained off and on of stomach discomfort. Headaches. Leg cramps. Weight gain. Pain when urinating and constipation. We have seen numerous doctors trying to identify what might have been the cause of those symptoms. Tests all came back normal and we were told to evaluate diet and lifestyle. We now understand that her body was trying to tell us something all these years but it just wasn’t the right time to find it. 5 years after this tumor likely started growing, the mass of cells changed and we avoided the likely treatments of chemo and radiation had this been found when we began looking.

3. If there are malignant cells present in the tumor that was removed, how do you know that there are not still malignant cells left in the remaining 10% of the tumor that could not be removed?

Good question. A question that I have had to have explained over and over again to me because of the fear that this will grow back and be bad. Well, it is rather simple actually. When they removed the tumor and sent it to pathology, they cut it up and studied all of it. It turns out the malignant cells were only found in the center of the mass. There were no malignant cells found on the outside edges of the mass. That would imply that the remaining 10% that was left behind, that came from an edge, likely only consists of benign cells. If there are malignant cells in that 10%, they have probably already received the message that they are supposed to differentiate and change back to benign cells.

Because we cannot know this without actually removing that remaining 10%, and because it is to risky to go in and try to take it out, we wait. We wait and we watch to see if there is more growth 6 months from now with a follow-up CT scan. If that image shows no more growth then we check a year after that scan and so forth until the tumor has shown no regrowth for 3 years. Now, if there is growth then we deal with it when we have to!!!!

4. Will there be any long term damage?

Thankfully, the very skilled surgeons did a remarkable job at avoiding the surrounding organs and they were able to remove that 90% of the mass with trauma but not permanent damage. The mass had attached itself to her diaphragm and they were able to cut it loose leaving only a small amount of scar tissue as it heals. Her diaphragm has returned to normal and her strong little lungs have recovered very well from the pneumothorax that showed up on her chest x- ray shortly after surgery. Savannah’s kidney has completely healed from the original infection that helped us find ‘Mr. Bad Boy’. As of right now, Savannah has some nerves that are having a hard time waking up in her abdomen and back from the nerve blockers they gave her to help with the pain post surgery. As those nerves wake up, she now feels the pain from the trauma of surgery. There are no signs of any permanent damage at this point.

5. How can you lean so much on faith and not fear? How do you remain so positive when facing so much unknown… a scary unknown? How can you possibly thank God right now?

Yes, I have been asked these questions. How can I write about God and His goodness when my daughter may have cancer. How did I choose faith over fear? Well, let’s just be honest. While fear and faith cannot be present at the same time, we definitely had times where we experienced both. There were horrible, heavy moments of fear. So heavy, it was hard to breath. But, there were moments where I felt a faith and belief in our maker unlike any other time in my life. I felt held. I felt sustained. I felt comforted. We felt an overwhelming assurance that no matter what the outcome was, we would be ok. We are an eternal family and everything would be ok. When I was lost in fear, Brannick’s faith, and the faith of all of you, carried me. When Brannick was overcome with worry and an indescribable heaviness of not being able to fix his baby girl, God gave me the strength to be his faith.

I do believe that even a miracle can be celebrated while still accompanied with the heaviness and the sorrow that comes with doing hard things. This was not an easy journey, even with our faith. There were tears every single day. There are still tears. There will be more tears. But, while we will never forget the heavy moments and the time we spent lost in tears pleading with our heavenly parents for good results for our baby girl , we know without a doubt that God gave us this miracle. We know that this was His plan.

I have had to forgive myself for not knowing how to find the answers for my baby girl. I have had to let go of that anger with myself that I brushed aside her complaints over the years when doctors had told me nothing was wrong. . I have had to tell myself that I am still a good mother even though I wasn’t here. I WASN’T HERE when it started to get bad and when no one would listen to her…. I didn’t listen to her. But…. in allowing myself to let go and forgive… I have also had to humble myself and recognize that I did listen. I listened when God whispered to me, ‘You need to go home!’ ‘Pack up and go home early.’ I listened.

I knew that something was wrong with my baby girl. I knew it with every part of my momma heart. She knew something was wrong with her body. She knew that she didn’t feel good. But even more than a momma knowing and a little girl knowing… is a sure knowledge that GOD KNEW. He knew all along that this was going to be a trial in her life. He knew all along that it would not be found when she was two, or three or five. He knew that on October 13, 2020 it was time for this mass to be found and He allowed everything to line up for us to take care of our baby girl.

Thank you, God, for your plan. Thank you, God, for your timing. Thank you for trusting me to mother, to love and raise this beautiful, sweet spirit. Thank you, God, for preparing the hands that would find and remove this foreign mass and help our daughter heal.

I knew. She knew. God knew.