Kolbjorn was a 9-year-old boy who loved reading books and comics, building with LEGO, watching Star Wars and Get Smart, playing Wii, singing and playing piano, and playing with his sisters, cousins, and friends. This was him in 2008, just after his 6th birthday, showing off the new Star Wars LEGO set he received from his grandparents:
On May 28th, 2010, after dealing with recurring headaches for a number of weeks, emergency CT and MRI scans at Royal University Hospital in Saskatoon revealed a mass in Kol's brain, in the left ventricle (fluid space) above the thalamus. After spending the night being observed in pediatric ICU, he went into the operating room, where the neurosurgeon removed a 4 cm tumor. Pathology tests revealed the tumor to be a grade IV supratentorial primitive neuroectodermal tumor, of the neuroblastoma subtype. It's our understanding that this type of tumor is relatively rare, and we haven't found much information online about it.
Kol recovered well from surgery, and is working with a naturopath to make sure his body and immune system are as strong as possible. He underwent radiation therapy during the summer of 2010, from July 7th to August 17th. He began the first of six 28 day cycles of chemotherapy on September 29th, 2 days after his 8th birthday. The odds are against us, but we're going to do everything we can to beat them.
Kolbjorn completed his last chemotherapy treatment on February 23, 2011. He is continuing to do well. He had an MRI on March 14, 2011, which showed that there had been no change in the "nodule" that remains in the left ventricle since September 2010.
His MRI on June 20, 2011 also showed no growth, and even perhaps, some shrinkage. Best of all, the nodule did not take up contrast, which means that it is not actively growing tumour. He will continue to have MRIs every 3 months to monitor changes in the tumour site, and to watch for any new growth. His hair is returning, his energy levels are up, and he has been gaining weight. We are thrilled that he is stable now. We thank God daily for the miracles He has done in our lives. Please pray for continued healing for our amazing son. Thank-you!
Kol had MRI scans every 3 months (September) following his last chemo treatment,which were stable until the beginning of December, 2011. That scan showed that the tumour had started to grow again. With very little chance of long term success, and a guarantee that they would make Kol very sick, we decided that the chemo options we were given weren't options for Kol. We started looking into alternative treatment. After much prayer, we decided on DMSO treatment in Oklahoma. On January 7, 2012, just as we were getting travel plans in place, a blood vessel in the tumour burst, causing Kol to have an intense headache. He was hospitalized and treated with morphine and steroids to reduce the swelling from the bleed. On Wednesday, January 11, Kol was released from hospital and we left immediately to drive 2400 km, with Kol and his 2 younger sisters, to Oklahoma for the DMSO treatment. His two older sisters flew down to join us there about a week later. Kol had 20 DMSO treatments, followed by a PET scan, and then we all crowded into our borrowed van and drove home. Kol is currently receiving another round of 20 DMSO treatments at home. Although he still has a constant, low grade headache and he tires easily, his health has been slowly and steadily improving.
While we were gone, our town held several fundraisers for us. We learned about most of them when we got home, but we are humbled and overwhelmed by the support we have received, and are very thankful to be living in such a wonderful town.
The MRI on March 14th showed continued tumour growth, which was, of course, devastating to hear. On a positive note, the damage caused by the burst blood vessel and subsequent hemorrhaging has healed well, and quickly. At this time, we are uncertain of our next step. Please pray for guidance for us and complete healing for Kolbjorn.
Ar the end of March, with Kolbjorn's headaches starting to become more frequent, he and his dad traveled to Victoria B.C. to consult with the author of this book. It was an encouraging visit. We changed some of the supplements he was receiving. In April, we decided to start using another experimental, somewhat alternative treatment for the tumour, called DCA - or dichloroacetate. There is more information about it at the official research site or here. We began working with a doctor from Toronto - the only doctor (at least that we know of) in Canada licensed to prescribe DCA nationally. Kol received his first dose on May 1, 2012. It will take several weeks to know if the tumour is responding to this treatment. Three days after starting the DCA treatments, Kol suddenly started to feel worse. He was experiencing excruciating headaches, which caused vomiting and a lot of discomfort. We've been working with a pain specialist, and with the help of steroids and narcotic drugs, we're starting to get the pain and vomiting under control. We don't know if the pain is due to the tumour increasing in size, or if it's because the tumour is responding to treatment. Either way, the doctors advising us are telling us to just persevere. We are still in contact with doctors in Victoria, Toronto, and Saskatoon.
On May 19th, Kol began vomiting more, so much so that the oral pain medication he was getting was no longer effective. On Sunday, May 20th, Kol was admitted to RUH in order to get him started on IV methadone for pain relief. Kol had a seizure on the morning of May 21st, which necessitated anti-seizure medication in addition to the methodone. Just an hour or two after he received the anti-seizure medication, at about 4:30, the nurse noticed that Kol's pupils were completely dilated, and they weren't responding at all. We were told that Kol only had days, or hours to live. We made arrangements to take him home for his last few hours. We left the hospital around 8:45pm. Kol died en-route to Outlook, in our van, surrounded by his family. His funeral was on May 26th, 2012. We miss him dearly.