Blakely Koenig

First post: Oct 25, 2020 Latest post: Nov 21, 2020
On 10/20/2020 our world was turned upside down to say the least. It did not take long to realize that our Miss Blakely's sudden and unexpected diagnosis would not only impact our family, but it has impacted a whole village of people that love Blakely just as much as we do. CANCER is one of the worst diagnosis a parent could hear for their child. We have always known Blakely as a spirited spunky sweetheart, but we didn't realize the extent of how many people's lives she has touched. We have been amazed at the family, friends, and community support that have reached out to offer their support and words of hope to the brave little warrior princess.


As many of you know, she loves gymnastics and has cartwheeled and backflipped her way through her little life. Up until 10/8/20, Miss Blakely had been practicing her usual twelve hours a week for her competitive gymnastics team. She reported a single zing in her back going to the high bar and then had some lower back pain when doing a back walkover. Then, on 10/13/20, she experienced terrible intermittent chest pains which sent us to the ER along with a stiff neck. The chest X-Ray was unremarkable. So, believing it to be a muscle strain we took the week off from gymnastics.


During the snowstorm on 10/20/20 we drove Blakely to the Sanford Hospital ER in Sioux Falls due to increasing continued intermittent chest pains that kept her out of school. That day she experienced dizziness after a terrible chest pain, and now what she described as tingling in her hips down. She walked herself into the ER that evening still looking bright and sassy and no more chest pains by that time. They completed the MRI and to everyone's shock it showed multiple masses throughout her brain and spine. The doctor was just as devastated to tell us the terrible news as we were devastated to hear the news.


On 10/21/20, Blakely was admitted into the Sanford's Children's Pediatric Intensive Care Unit (PICU) where she was blessed with an awesome neurology and oncology team of doctors, fantastic nurses, and supportive staff. They did a biopsy on the back of her neck to remove a portion where she could no long tip her neck back due to the building pressure. It was determined to be Medulloblastoma. As of 10/22/20, she was beginning to lose feelings from her hips down. They determined her brain tumor was inoperable due to the location in her brain and the tumors covered the length of her spinal cord from her neck down. 


They determined she needed emergency pediatric radiation and Children's Minneapolis accepted her for the same. Blakely was blessed with an awesome Sanford flight crew that flew her out on 10/22/20 to Children's Minneapolis PICU where her new neurology and oncology team of doctors were ready and waiting. She was excited to fly and took the trip like a champ. On 10/23/20, they prepped her for radiation and made her mask that holds her position for each session. Again, like her usual little brave self, she dealt with the increasing neck and back pain like a champ. Her radiation oncology team was patient and diligent with her little body. They completed additional MRI's that evening. Throughout our whole process we have been met with the best of the best and kindest souls that treat our child so kindly during this scary time.


On 10/24/20, Blakely underwent her first emergency radiation therapy. The staff came in just for her. She was perfect. She never cried. She never complained. The radiation oncology team was fantastic. Her doctor supervising the pain meds even braided her beautiful hair that she knows will fall out. She will never stop fighting.


We can't say enough great things about the lovely nursing staff that assists Blakely every day and night with her changing little body. They love her sweet soul.


We struggled with how to tell, who to tell, and how much to tell, but we have learned after a few heartbreaking days it is nothing to hide from and we have been on the receiving end of so much support and love from family, friends, teachers, coaches, and community. Thank you for taking in our other children without even batting an eye. Thank you for cleaning my house that hasn't been that clean in years... sorry to great family and friends that have been organizing our chaos. Thanks for bringing clothes and caffeine so we can stay with her every moment. Thanks for all of the encouraging texts, emails, and calls as we try to keep ourselves together.


We have been candid with our other children who are 3, 5, 7, 12, and 19. They are at varying levels of understanding. Due to COVID they cannot visit their sister and see her. Facetime has been a blessing and we try to take the moments that Blakely is feeling good to chat.


Blakely has gone through tremendous physical changes in 5 days, but her spirit, spunk, and charm remains that same. All her nurses and doctors are fighting hard for her to come up with the right treatment regime to beat this beast. We can see they are falling in love with her just as we all have due to her sweet personality and whit. She has taken physical changes like a champ. Physically she is now unable to use her legs and is numb from the chest down. We are hopeful she responds well to radiation and we can reverse some of the numbness and weakness caused by cancer causing pressure on her spinal cord. We know she has the brute strength to do it. In the last day she has to lay down or experiences too much pressure in her brain and gets a bit feisty with her mama due to the amount of steroids she is on to slow down her brain and spinal cord swelling.


The bottom line is she has been diagnosed with Medulloblastoma grade 4, M-3. So, it is the type of cancer that aggressively spreads through the fluid that surrounds and protects her brain and spinal cord and hers has extensively spread throughout. To be quite frank, there is more cancer than spinal fluid left. Her brain has multiple masses and lesions as well.  Blakely through her grace and grit has given her tumors names, for her brain cancer-Curly, and for her spine cancer-Squirrelly. She continues to tell everyone she is going to kick Curly and Squirrelly out of her body as they have not paid their fees. 


We have been blessed with the rally of support from everyone and Blakely knows how much she is loved by all. We will continue this journey together with her and I know all of you want to know how she is doing. We will try to update as much as possible, while trying to be candid but kid sensitive.

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