Diffuse Midline Glioma (DMG)

For the last several months we have referred to Mark’s cancer in very broad terms, “the type of cancer Mark has” or “brain cancer”.  The reason that we were so vague is because we did not want you to Google ‘Diffuse Midline Glioma’.  If you do, you will immediately see things like, average survival is 9-12 months from diagnosis, <1% of chance of 5 year survival, terminal, Grade 4.  We did not want to reduce Mark’s disease down to a statistic and we did not want pity.  We are at a place now where we are ready to share with you the type of cancer Mark has.
 
Diffuse Midline Glioma (DMG) is aggressive, it is inoperable and it is in a part of the brain that controls, speech, personality, motor function and vision.  Simply put, it is the worst of the worst.  It is also extremely rare.  Only 150 – 300 children are diagnosed each year.  It makes me sick to my stomach to look at the numbers and think about how unlikely or unlucky it is to be stricken with this disease. 
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We always thought that if Mark is rare enough to get this disease, he is rare enough to beat it.  We knew that the odds were against us from the beginning but he has always been a special child.  It has always been our hope to keep him alive long enough for there to be a drug or a treatment that would be effective in stopping the tumor from progressing.  Currently there are no proven options, only trials. Experiments.
 
After the initial diagnosis a patient undergoes radiation with the hope of shrinking the tumor or stunting it’s growth.  After radiation some patients enroll in a clinical trial to try and shrink the tumor further.  Other’s simply enjoy their time with family until the tumor progresses again.  It is not a matter of if the tumor will progress, it is a matter of when.  At this point, some patients will undergo radiation again or re-enroll in another trial specifically for “re-occurrence.”  This is the best option available, if you are even healthy enough to qualify and that is unacceptable. 
 
It felt appropriate to share this now because it is Childhood Cancer Awareness month.  It is important that we all come together not just for Mark and for our family but for every child and every family that is diagnosed with cancer.  Cancer is the second leading cause of death in children aged 1 to 14 and the number one leading cause of death by disease in children.  Childhood cancer is grossly underfunded with only 4% of federal funding for cancer research directed towards childhood cancer.  In the past 30 years only seven drugs have been approved by the FDA to treat childhood cancer.  In the same time over 200 drugs have been approved for adults. 
 
This is not the plan that we had for Mark’s life or our own but it has been thrust into our lives and laid at our feet to do something about.  It is a cause that you don’t know you need to get behind until it is too late.  We never thought it would be us fighting this fight.  We ask all of you, Mark’s Army, to stand with us and beside us as we fight for Mark and every other family and child whose life is forever altered by cancer.