Been an emotional month, but a very successful one, spreading the word about childhood cancer! The entire month of September is dedicated to awareness. I've watched my Facebook turn GOLD and seen so many moving videos of warriors that have lost their battle, those still fighting, and the survivors. I cried as "I watched The 46 Mommas Shave for the Brave" in Los Angeles and make their appearance on Stand Up To Cancer. Hopefully one day soon the gold for childhood cancer will be as well known as the pink for breast cancer.
We also had some recognition for Connor's condition OMS on the show "Mystery Diagnosis" on Discovery Health channel. The Jennings Family from Texas and their sweet little girl Alexa taped the episode last May. This was a huge deal for my OMS online group-this is the first national attention the disease has received. It was very emotional for those parents that have seen the episode, I am anxiously awaiting seeing the episode as well, but we no longer have Discovery Health, luckily one of our OMS parents is making copies for all of us.
We have been seeing signs of the steroid weaning process not going well and have begun researching our options. Long discussion with the doctor a couple days ago and no decisions yet...but it is sure to be a difficult process, much more difficult than we imagined. In the meantime Connor is the trouper he always is-and we are taking it day by day. The hardest part is seeing him in pain and getting him off the steroids is the best relief for that issue-but we do not want to exchange one problem for another on a different drug, that might be even more intense. We know that immunosuppression is the best hope for him as far as preserving his brain and sparing him any further damage from the OMS. And his little body can only stay on the steroids so long before we will HAVE to move to another drug-most likely chemotherapy. The doctor wants us to first use Rituxan again, which is a four week infusion and then move on to 6MP, an oral chemotherapy. Me and Sam have discussed this and will only move to this treatment plan when it is absolutely necessary. But it is becoming painfully obvious that he WILL most likely need to move to this eventually. He is just not able to be free of the drugs yet without relapsing with his OMS.
We had hopes of going to the circus this weekend...but decided not to risk it. We also wanted to try and get away for a few days-but just not sure if the kids can afford to miss even a day of school right now. Such is the life of high schoolers, lol. The dedicated ones I suppose anyway....
Please keep Connor in your prayers that his symptoms ease and specifically for pain control in the coming week as we give him an added steroid pulse dose to try and get things back under control. Also, prayers for the others in the battle! Our cancer friends especially right now needs prayers- little Chloe Shiver is back in NY having more stem cells harvested and Patrick Chance's family received devastating and heartbreaking news of widespread disease throughout his body. Truly sad to hear...but his family continues to PRESS ON and pray for guidance from the doctors, and a miracle for their son.
It has been hard to see so much sadness around us but it also reminds us how lucky we are to have Connor with us and doing as well as he is. He is our miracle! Never far from my mind is another lost child, Reid Nelson, an OMS angel now. Never forgotten! We are so happy to share that his parents are expecting a new little baby.
Love to all,
Before OMS Onset....
Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...