“A while ago, I wrote that “uncertainty is the refuge of hope”. The corollary to this is that certainty is the end of hope. Well, now we have certainty. Daniel will die from osteosarcoma, probably fairly quickly. Any hope I had after his relapse is gone.
In the five weeks since his surgery Daniel has grown a 3 cm inoperable tumor (inoperable due to location) and malignant pleural effusion (essentially liquid osteosarcoma) around one lung. There is also a suspicion of “several” tumors on his pleura, although this is not completely clear.
Sara and Daniel and I have had some horrible, difficult conversations. I know of no good way to tell a 13-year-old child who desperately wants to live that he is going to die. And I know of no good way to tell a 17-year-old about her brother’s impending death.
I have also had some horrific conversations with Daniel’s oncologist about the exact mechanics of how he will likely die, how much medical intervention to practice, and how much time he might have left and how to make this time as comfortable as possible given a disease which is brutally painful and savage. I signed my child up for hospice. I hope you never, ever go through these conversations or experiences.
Daniel, Sara and I are figuring out right now how to go through this period. Prayers, good thoughts and wishes are all appreciated. We will figure out how to let everyone know how you can help if you’d like, and how we will be taking visitors. Please give us some space and time to figure this out — something which should never need to be figured out. Be gentle with us as we walk down this deeply lonely and desperately grieving path which I would not wish on any family.
And please understand that I do not wish to hear that Daniel will be in a better place (what better place is there than home with his sister and mother who love him deeply?), I do not wish to hear that at least his suffering will be over (my child — no child — should suffer this way), I do not wish to hear that God gives his biggest battles to his strongest soldiers (my child is not a soldier — he is a child) or anything similar. Daniel will not be gaining his angel wings. Daniel will die. The end. His heart will stop pumping, his lungs will stop working and his brain will stop processing. He will die. My beautiful, courageous, insightful, loving child will die. And his sister and I will grieve his loss for the rest of our lives. We will love him forever and remember him forever. I will always be the mother of two beautiful, wonderful children. And Sara will always have a younger brother.
And please remember that Daniel will die because we, as a society, do not deem the leading cause of death by disease for our children something worthy of reducing. We are “OK” with the fact that had Daniel been diagnosed 30 years ago with osteosarcoma (the most commonly occurring primary bone cancer which primarily affects children and young adults), the drugs he received and his entire treatment would have been EXACTLY the same, and the outcome would have been EXACTLY the same. We are “OK” with the thousands of children who die each year from cancer. And this year, that number will include my Daniel. My precious, beloved Daniel. Please remember him and us in your thoughts and prayers.”
Original Facebook Truth365 post here.