Greetings! My name is Evan, Sammi's Father. I am raising funds to help with ongoing care and expenses for Sammi's treatment.

Sammi is very gentle soul. She loves to paint and draw. Plays numerous instruments such as the ukulele, flute, piano and violin. She enjoyed playing for her high school orchestra, however had to withdraw from school all together to fight cancer and multiple sclerosis. She has a chihuahua named Cupcake who loves to follow her everywhere. This is her story....

 

It started June, 2021. Sammi started experiencing numbness and tingling in her left foot. A few days later it progressed up her left leg and into her right leg, ultimately going to the middle of her back where she had no feeling. She was taken to the University of New Mexico Children's Hospital, where scans showed Multiple Sclerosis with lesions in her brain and spine. She had balance issues where she needed a walker and wheelchair. She was hospitalized for nearly a week with high-dose IV steroids.

 

Symptoms continued to progress; she was further hospitalized at Phoenix Children's hospital for more steroids.

 

By August, she had constant headaches not relieved by any medication or treatment. She could not walk independently and required a walker or wheelchair to get around. She was constantly dizzy and in pain. Repeat scans at Mayo Clinic revealed she had a tumor in her cerebellum that needed emergent surgical intervention. Frequent scans were required to map her brain so doctors could plan their care.

 

It was supposed to be a 4-5 hour surgery. It turned out to be 14 hours. Two of the best neurosurgeons worked side by side for many hours to attempt to remove the tumor. Sitting in the waiting room, the Doctor came out. Revealed that her brain was so swollen that they could not get all of the tumor and looked very atypical. The tumor was growing into her brain like "tentacles." It was difficult to remove due to the complexity of the anatomy. "It looks like cancer." To hear those words, her mother and I cried. The uncertainty that she would wake up was also discussed.

 

I stayed with Sammi overnight while she rested on a ventilator and a drain in her brain to help with swelling. She was such a trooper when she woke from sedation. She used sign language to communicate with the nurse and me. Over the week she continued to have a drain in her brain and remained in the intensive care unit at Mayo Clinic Hospital. A repeat MRI showed residual tumor, but the swelling had decreased, so she was scheduled for another surgery to get the rest of the tumor out. It was devastating news. Sammi had her second surgery and remained in the intensive care unit for another week. She had tremendous pain, requiring many medications to help keep her comfortable. Every movement was excruciating. To hear your child scream in pain is something no parent should have to hear. Something no child should have to endure. After being in the intensive care unit for two weeks and on the medical floor, she could go home.

 

After a few days home, she was brought for a follow-up exam. The much-anticipated removal of her staples on the back of her head. The doctor removed one staple, noting that Cerebrospinal Fluid was pouring out. She needed to be admitted immediately for a 3rd surgery to repair her CSF leak. Once again, we were in the hospital for another week. Sammi and I spent Christmas Day in the hospital. The nurse brought gingerbread cookies, frosting and festive toppings for us to decorate. Friends brought festive decor and a Christmas tree for her room.  Finally, after a month in the hospital, I was able to bring Sammi home.

 

Pathology results came back. Sammi had a High-Grade Astrocytic Glioma. A very aggressive cancer. Termed high grade due to the aggressive growth rate from MRI scans within two months. As this was an aggressive cancer; treatment would also have to be aggressive and bold.

 

On the first day, she was supposed to start chemotherapy; she was diagnosed with COVID-19. Treatment was held.  Immediately she was able to get a monoclonal antibody infusion. She did well, and treatment was restarted ten days later.

 

She endured six weeks straight of chemotherapy. 42 days.

Radiation treatment for six weeks; Monday through Friday.

It wasn't easy. She was constantly nauseated. Frequent trips for doctor's visits, lab draws, IV hydration treatments, phone calls with nurses, doctors, and specialty oncology pharmacies both in Arizona and Rochester.

 

Next, Chemotherapy for six months.

Each cycle is five days. Monday through Friday every 28 days.

Nausea and weight loss are a constant battle requiring a complicated schedule of many medications.

 

Sammi just finished cycle 4. She is on her maximum dose of chemotherapy. The doctor asked if it was too much they could look at options to lower the dose. Sammi responded, "No, I'll power through it!" She is such a fighter!! Her strength is tremendous!

Two more cycles to go.

Two more months for this part of her journey.

 

After cancer treatment is complete, she will begin treatment for Multiple Sclerosis.

 

As her father, I am her primary caretaker. Through this journey, I have not worked for months. By the time I was able to return to work, I had to call into work to care for Sammi at least once or twice a week and only receiving half of my pay. It has been a year since I received an entire paycheck. I am in constant contact with all her providers planning her care. Appointments, Labs, MRIs, Doctor's visits, nurse calls and chats, updating pharmacists about her symptoms and medication regimen. Her medical team consists of Neurology Oncology, Neurosurgery, Neurology, Radiation Oncology and Palliative Care.

 

For those of you who know me, I am not one to ask for help. I try to do things on my own as best as I can. No one can plan for something like this. I pray that no family has to go through this. No child has to endure what Sammi has gone/is going through. Funds will continue to help with expenses for her care. I realize it's not just me taking care of her. It's all of us taking care of her. We've seen and felt it. Your love. Your kindness. Your support.

 

Anything helps; really it does. It made a difference in our lives. I was able to care for my baby girl full time and continue to do so. At one point, the engine in my car seized and was in the shop for a month and a half. I had to rely on friends, Uber and door dash to get to work, eat, and take Sammi to her appointments. I am thankful for everyone offering me/us a ride.

 

Thank you for reading our story, Sammi's story. I continue to thank all our friends and family who have contributed so much to her journey. Thank you to all the health care providers who have cared for Sammi. Thank you for making us feel like family. Thank you for continuously checking on us. Thank you for all the gifts. Seeing her smile during the roughest times was a tremendous gift to me. Without you and your support, we would never have been able to do this alone. Thank you! Thank you! Thank you!