Karina's Battle with Cancer
Karina's challenges with cancer began when she was just 10 years old. Her cancer, alveolar soft part sarcoma was a rare cancer without cure. It was metastatic when first discovered (the typical pattern for ASPS), and known to be both chemo-resistant and radiation resistant. Because of the lack of any established beneficial medication and experts who told her and her parents that she had 6 months to live, she and her parents began pursuing all research-based leads that could have the hope of stabilizing her cancer.
Karina's cancer journey took her to Europe for experimental laser surgery, clinical trials for new medications in which she had to petition for age exceptions (there are few clinical trials for children), petition for compassionate use medication, and then appeal of insurance denials because no cancer medications had been approved for her rare cancer. She took every physical and mental challenge in stride, and she saw every new problem as an opportunity to help other people as well as strengthen her faith. We've include pictures of her pomchi Teka because Teka was her Make-a-Wish gift. Teka really blessed her and our whole family's lives. We actually got Teka to pass the 1st level of Delta Dogs so she was an official service animal and could travel on planes.
The picture above was from Karina's time in the intensive care unit after she had had open heart surgery to remove a metastasis that had floated up her pulmonary vein into her heart. We learned many lessons along the way and our goals is to share any information that may help others who will follow.
Our website is still under construction, but we will be posting Practical Resources, Spiritual Matters and Cancer, Karina's Cancer Stories, Molecular Profiling, and Insurance and Financial Issues, and Clinical Trials and Obtaining Investigational Drugs.
Karina was honored by the Clearity Foundation June 22nd in San Diego
Karina's Mom gave a short talk to the 200 or so attendees.
A copy of her talk is here:
The following is a Photo Gallery of Karina's Cancer Journey:
We waited a long time at Boston Childrens Hospital - to see an 'expert' in her type of cancer. The iPhone had just come out - and so here we were horsing around before we saw the doctors.
Karina mugged for the camera as she waited for her first procedure - to see how invasive the cancer was.
By having her surgery at UCLA - she could combine primary tumor removal with surgical reconstruction. We knew that the cancer was metastatic at this point though.
The size of Karina's cancer was 6 cm, so in the worst prognostic group. The Boston doctors had given her 6 months to live. And one study with her type of cancer had no one surviving with this large of a tumor and spread - out to 2 years.
Karina surprised us all by putting with her grandparents 1 week after surgery.
Kathy and Lindy were Karina's Make a Wish angels - they also gave her a shopping spree at Pet Smart.
Karina's little bundle of joy. Teka was too little to be separated from her mother, but Karina got to see her before her lung surgery - and she was able to take Teka home forever after her lung surgery at UCLA
Teka was so tiny!
After Karina's first thoracotomy, US surgeons told her she was inoperable. We found that it was possible to having lung sparing surgery that could extend life. We're grateful to Dr Rolle for doing her surgery - even though she was only 11 years old and the hospital was for adults only.
Karina fortunately got an adapter so she could use her Nintendo DS
Karina still had her chest tube in after surgery
Karina still had her chest tube in when she went outside to play chess with Brock.
Karina and Teka visit Dog Beach during their trip to CA to enter an experimental clinical trial (ARQ197). She had to petition to enter the trial because the lowest age was 18 years.
James 1:12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
Karina had these scans to identify the tumor inside her heart.
Karina meets with Dr Brian Reemtsen and the rest of the cardiac surgery team
We thought Karina's heart surgery would be her last because of the condition of her lungs. Thankfully she had more than 2 years that were relatively stable on various medications.
Because Karina's chemotherapy turned her hair white, she regularly had her hair dyed with her wonderful cousin Kirsten. It allowed Karina to see Kirsten more often and that was a tremendous blessing.
There were 3 hospitalizations in the last month and Teka was so happy when Karina came home. Karina's last weeks were physically and emotionally very difficult, but there were brief breaks for which we were all grateful. Before Karina passed away, she had shared her Facebook password with me. It was a treasure her voice through all the chats. This text caught my eye: "It's God's will, and even if I rather that He would call me later, this world is just a beginning of a journey toward Him.