so I just finished watching the three part special on PBS, and walked away with a bit of false hope, but more than anything mad.  When I was little I wanted to be a pediatric oncologist, mostly from all the Laurene McDaniel’s books I read, I wanted to change the world, somehow over the years I got talked out of it (I was told how sad it would be, not sure anything could be sadder than watching your own son live it), in all honesty if it wouldn’t take me 11 years, I would go back and do it, because no one can change the world quite like a mom, I wish I had the brains to figure it out because at this point I definitely have the drive.  Casey and I were talking in 5 years we think and hope we will be in a different place with adult cancers, with childhood cancers maybe close, even the other fatal ones like DIPG, with rhabdomyosarcoma of the brain probably no place different than we are today, 100 percent fatal, there just aren’t enough kids, or in different terms a “market” to justify a cure.  This is why when anyone asks what they can do to honor Connor we recommend Heartworks because it is a charity that has helped us everyday, but also we see them in action in our community helping, making a difference, knowing Connor can somehow help that cause is one of the few things that makes us feel good.  We feel the cancer community, even the childhood cancer community is divided, everyone raising for their cause and I get it because the rare ones would never get researched if we weren’t divided, because big pharma sure isn’t going to research something that 200 or less children get a year, but for us we have no idea what to do, no doctor is going to look into what Connor has even if we walked in with $10 million dollars for them to do it with, it is just too rare, like I have said over the past 40 years there have been maybe 15 cases, we are still arguing with the top rhabdo doctor at Sloane on if it is really a rhabdo because he just does not believe it can appear in the brain (even though everyone else there agrees and has for the past year including one of the top pathologists in the world), so trying to push a research agenda in Connor’s honor would do nothing more than frustrate us, and that is why we always say Heartworks, which is a charity that has nothing to do with cancer, but just on being a human and helping people when they are in need.  To that end there have been a lot of specials on TV lately about immunotherapy and yes they are promising, hopeful, but not much help to us.  Typically to get into these trials you need to have a certain mutation, if you don’t have it you are out.  You also need to be an adult, things are typically tested on adults for 10 years before children can be considered.  There are 2-3 immunotherapy trials right now open to children, currently Connor does not qualify  for any of them.  One of them that is the most liberal, he qualifies for in every way except for weight, you need to be 15 KG.  The machines they have just can’t handle children smaller, essentially ruling out most children under 4 because all these children had to go through traditional treatment first, and standard protocol for “infants” (children 3 and under) is intense chemotherapy similar to Connor’s.  For frame of reference Connor was just shy of 27 pounds when he started treatment last year (15kg is 33 pounds), he finished treatment this year around 25 and since then has bulked up to about 29, so four pounds short.  Even if he did qualify then quality of life would be considered and we would need to discuss if this magic phase one trial did work, what would his life be like, as of right now he has no control of his body, but is still very much himself.  So that is where we are, exhausted our options, but at the same time trying to pack on the weight just in case he continues to stay relatively stable, and that is why little to big things done for us mean so very much.  On Thursday night, there was a bar class in Connor’s honor that my college friend Suji organized with all the proceeds going to Heartworks!  It was my first class and I loved it, completely cleared my head, I see what all the rage is about now!  Yesterday, our neighbor stopped by and dropped off something called a Tula, it is amazing it is like a toddler baby bjorn, and will completely change our lives, right now these acts of kindness, the essence for which Heartworks stands for are very much keeping us going, oh and the hope we really do get to Florida next week, we booked it now just need Con to stay stable!!!



One thought on “Immunotherapy

  1. I’m so glad you have the Tula. It’s going to be really helpful and comfortable!

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