By Jaime King
In June of 2015, our beautiful and energetic daughter, Katherine King, was having symptoms that no one understood or had answers for. She had a heart rate of 32 BPM’s. She couldn’t walk, talk, see or hear. She was in pain, had headaches and a constant fever for two weeks straight. Our once happy, active daughter was dying.
Four doctors debated. We were sent everywhere and received multiple diagnoses. She was prescribed pills. She had low iron. Another said it was a virus. No one had answers.
Finally – and unfortunately – Katherine was diagnosed with a brain stem glioma called “DIPG” (Diffuse Intrinsic Pontine Glioma).
On average, 300 kids a year are diagnosed with this tumor in the US. It impacts kids between the ages of 5 and 8. There is a 0 percent survival rate and it kills swiftly.
At the end of her life, our child will have the cognitive ability of any 7-year-old. She will be fully aware of her surroundings. However, she will not be able to talk, walk, hear, see, feel, touch or communicate her emotions to us in any form. She will be like this, until her death.
Immediately upon diagnosis, you’re told there is no hope, no surgery, no chemotherapy or any other treatment that will work. You have the option of radiation, which we chose in order to get a few more weeks out of her life. However, this caused Katherine to experience severe trauma, PTSD and emotional disassociation. She will never be the same.
Go home. That’s what we were told. So we did. Hospice/Palliative Care starts immediately; the insurance had no problem approving that, of course. We were sent home with harsh steroids, morphine, anxiety medicines – you name it. Katherine was asked to start them, but we refused, and still refuse, until we have no choice.
We chose another route. We started Katie on a strict regimen of CBD/THC oil therapy. We reached out to a local cannabinoid collective, which specializes in pediatric cancer treatments. They have held our hand all along this journey.
Right now, Katherine’s tumor is larger than it was in June, and she has some wobbliness, but none of the other symptoms seem to be affecting her as drastically as they were last year. She isn’t on morphine, steroids or an anxiety pill regimen.
I believe wholeheartedly in cannabinoids as a natural solution for cancer treatment. But they will not save our daughter, as the brain works in funny ways and will not allow all of the benefits of cannabinoids past the blood/brain barrier. However, it has definitely given our daughter more time, a quality of life that she did not have for a long period of time following diagnosis.
The treatment has given us the ability to make memories. She smiles and she enjoys life right now, as much as she can in this situation.
Right now kids with cancer get 4 percent of any national cancer funding. Of that 4 percent, 1 percent suffers from brain cancer, the largest killer of kids as it relates to cancer deaths. DIPG research receives virtually no funding.
This is unacceptable. I watch kids die of this so-called “rare” disease every day online in the DIPG communities, a travesty beyond comprehension. Parents are not allowed to give their kids these cannabinoids in certain states, for fear of being arrested. Some have suffered those consequences.
I will watch my daughter die, but it will not be in vain. We will continue to advocate, as so many DIPG families do.
Cannabinoids have helped our daughter. But we are forced to pay cash for this medicine, and we are in severe debt because of it. Our monthly total for cannabinoids right now is $3,200. It will increase to $4,800 by next month. This isn’t the collective’s fault; it’s the fault of our governments and the insurance companies.
We shouldn’t have to pay for Katherine’s medicine. This should be covered. Our kids should get the help they need and have the option to avoid harsh drugs that reduce their quality of life.
We are our only supporters as we continue the fight for our children.
#MommaTheBrave (Jaime King)