One month ago, Parker was diagnosed with his DIPG. One month ago plus one day, neither of us had any clue that this even existed. We were part of a majority. A huge majority. A majority that sleeps peacefully at night, knowing that although grave illness exists, for the most part modern medicine is capable of giving one hell of a fight. But we are now in a very small minority: a tight-knit group of mothers and fathers who are currently battling or have already lost their brave warriors to this beast.
The mean life expectancy is 9 months from diagnosis. It has already been a month. 11% and change. Who thinks about their kids like this? We do, because we have to. DIPG families must always have one eye on the calendar. Not because we are dark and demented, but because we are desperately searching for possible treatment plans, calculating time requirements, coming up with our own odds. Typically when you leave a hospital you leave with a plan, a guidebook so to speak, along with your diagnosis. You have a team of doctors that have seen this a million times, have confidence in outcomes, have computer models giving amazingly accurate guidance, and they have a full understanding of what your CT or MRI is saying. With a DIPG, the doctor sits across from you and says all of the statistics that nobody wants to believe are possible: 9 months, less than 1% survival, etc. Then you leave the hospital. Parker was admitted January 16, diagnosed with a terminal disease on January 17, and we went home January 18. We didn't leave the hospital with a radiation plan, or a cocktail of medications, or an appointment for chemo. We left with our child, the clothes he wore, and the random assortment of things from home I thought were important to have during our stay (turns out it was just all garbage).
What came next was about a week of heavy grieving. Grieving at the loss of a child that is sitting next to us on the couch, watching his favorite movies, or playing LEGOs, or chasing his sister around the house. Through the grieving comes desperation. I would almost call it hope, but remember, we didn't leave the hospital with hope. Hope is the playbook that wasn't included with our DIPG. We had to find our own hope. To be fair, we didn't leave the hospital completely empty handed. Parker's doctor briefly discussed a clinical trial the hospital participated in. It was up to us to do research. clinicaltrials.gov, nih.gov, reading published literature, etc. This is not your typical scenario for health care, but it is what DIPG parents must quickly adapt to and accept if we are going to be able to pick ourselves off the ground and run. Clinical trials are abundant, but nobody is there holding our hand. It's up to us to reach out and make contact, to send imaging and health records, and ultimately up to us to decide whether a particular treatment is worthy of the precious time, travel, expense, and changes in quality of life for our son. Whether it's a trial here in San Diego, or in New York, in England or in Germany. Chemo, immunotherapy, convection enhanced delivery, radio-isotope this, x-blocker that, inhibitors, etc. Many of these trials also have prerequisites. Whether it is a biopsy, or a particular range of weeks after radiation, or the absence of a particular structure within the tumor itself. So you mentally put all these things on 3x5 cards and shuffle them around in your head. We can do this if...but not if this...that would allow this...but we will need to expedite a passport. And if your first approach doesn't work, do you have a second or third option? Is he in progression? Wait, how many weeks has it been since radiation?
There are only two people on this planet of billions that will determine the path this journey takes. This is a strange place to be. These thoughts, these decisions and forecasts, Vegas bets on our child's life. We really don't know what the next day will bring. For now we take comfort in our decision to move forward with our current plan, knowing that tomorrow the plan may change, and together we will formulate the rest of the fight for Parker. No wrong decisions and no regrets.