Interesting news from NCI about a new trial for pediatric oncology patients:
The Trial NCI-COG Pediatric MATCH is a nationwide cancer treatment clinical trial for children and adolescents, from 1 to 21 years of age, that is testing the use of precision medicine for pediatric cancers. In this trial, patients with solid tumors that are not responding to treatment are assigned to an experimental treatment based on the genetic changes found in their tumors rather than on their type of cancer or cancer site. The genetic changes are found through genomic sequencing, which is a laboratory method used to determine the genetic makeup of cancer cells.
Types of Cancers Treated This trial is for pediatric patients with advanced solid tumors—including non-Hodgkin lymphomas, brain tumors, and histiocytoses—whose cancer has gotten worse while on treatment or has come back after treatment.
Where the Trial Is Taking Place Pediatric MATCH is taking place at around 200 children’s hospitals, university medical centers, and cancer centers across the United States that are part of the Children’s Oncology Group (COG). To find a site, visit the Children’s Oncology Group institution locator page
***Warning to those who were with us at the end - you might not want to read this one.
6 years ago today we lost our girl. 3/4's of the years she lived, she has been gone. It's surreal, really, to think she has been gone this long, At times I find myself questioning whether she really existed.
For the first 4 years, we purposely traveled on this day - trying to blur the lines of time so we could erase the date. We are scheduled to travel today as well, but not until late in the evening, so we are faced with trying to function normally in our day to day lives when the day is anything but normal.
Right now, I find myself numb, unable to find the tears as I lay in bed this morning, in the same place where McKenna took her last labored breaths, and replayed her last hours.
We didn't know it would be her last day with us. There were gardners mowing neighbors' lawns outside early that morning (the sound of that in the morning still puts me on edge). McKenna had been unresponsive, but I don't think she was in pain. I was lying next to her, reading her one of her favorite fairy books, not sure whether she could hear me or not. She was peaceful during that time. Hanah, her adopted big sister, and Jordan came in to spend time with her, so I snuck downstairs for a few minutes to give them a few minutes alone.
The girls shouts brought me racing back upstairs. Suddenly McKenna's breathing had become raspy and labored. The girls were frantic, and so was I. McKenna had aspirated. We had just received a suction device, and we called our friend Jennifer (one of McKenna's second moms and a nurse) to help. Thankfully, our hospice nurse made an unscheduled stop to check in on us, and worked to help suction the secretions. As they worked and nothing changed, she was the one that finally, gently said that this would be the end.
As far as DIPG deaths go, McKenna's was not horrific. I crawled in bed and held my girl as we frantically made calls to our family and friends. For the next hour or two (I am not really sure how long, or even what time she died - for time stopped for me in that moment) those who were closest to her surrounded my girl with love, just as they had when she was born. I held my child, feeling her heart race as it tried to supply her body with what it needed, the echoes of her struggle to breath reverberating in my body.
I remember counting those last breaths as they became further apart - 30 seconds....45 seconds...sure that she was gone, and she would gasp one more time.... and then there were no more. Holding her, with her sister one side, Dave on the other, and her beloved cat Callie curled next to her, the shining light of our beloved girl was extinguished.
I continued to hold her, as our family and friends said goodbye, until we had to let her go so that her tumor would still be viable for a cell line. The hardest, most painful thing I have ever done is allow Dave to take her from my arms and watch him carry her out the door for the last time.
I recount this day not to shock or sadden you, but to give you a glimpse of the scene that often plays in our heads. To show you why we work for change. That day, that moment, took not only what was most precious to us, but altered us as people forever. We try to live day to day remembering the life of McKenna, not her death, but today we cannot help but honor our child by honoring her death.
And though, even as I write this, I still cannot find the tears - have no doubt they will come, probably as I walk to the beach which is where I seem to find her most easily.
If you can, today, please do us a favor - think of our girl, and as you do, find a way to pay it forward and comment about it below. It would help us immensely to know that because McKenna did exist, her spirit is still insuring that there is good being done in the world. ...
Our hearts go out to John McCain and his family. A diagnosis of glioblastoma (this tumor is similar to DIPG in that they both involve glial cells that multiply and spread rapidly) is devastating no matter what your age. Adult or child, the prognosis is similar and there is no effective treatment.
McKenna has been spotted all over the place this summer - Italy, Alaska, on the beach, in the mountains, on a boat... Because McKenna loved to travel, we are going to play a new game (plus it makes us smile) - Where in the world is McKenna? Post to our page wearing your McKenna gear and tell us where you have been having fun this summer. ...