One Year!

I can’t believe my last update was a year ago. I think part of me wanted to ignore updates thinking I could possibly jinx Trip’s good health if I commented on how great things have been.

This weekend marks a full year that he has been off chemo. What an unbelievable milestone!!! We are thrilled that he has made it without any treatment for a year. We see his oncologist every two months now (but he’s still on speed dial). We see his endocrinologist every three months and his ENT every six months unless anything comes up in between.

His DI has been manageable for some time now and since he is getting older his endo has left it up to me how to best give him his doses, which helps get through any special event, practice or class without a breakthrough interruption. We are starting to teach him to be more aware of his breakthroughs so hopefully by middle school he will be able to manage these himself.

There have been concerns with his fine motor skills. Who know if this is a disease thing, treatment thing, or a Trip thing. He will see a neuropsychologist in November because of the disease and time spent on methotrexate, but I’m honestly not expecting any upsetting news at this point – only useful information.

The area of concern on his scalp that was there a year ago is still there. It hasn’t gotten any worse and only spread a little. I think his little body is doing a great job of keeping it at bay, but of course I’m still nervous about it. I’ve decided that feeling will never go away. We see his oncologist in September. I expect an MRI soon after to keep on the six month track.

September is Histiocytosis Awareness month. If you’re on my Christmas card list, look for something in your mailbox. Trip’s cute little picture is on the Dear Friends Campaign brochure along with many others affected by this disease. Our mission to raise awareness for histiocytic disorders is still at the top of our priority list even though we are celebrating a year of excellent heath for Trip. Children’s Health asked us to be on the Center for Cancer and Blood Disorders Family Advisory Council and we hope to make a difference by helping others who have had a heartbreaking diagnosis as well giving the hospital insight on what worked great for us and where we would make changes. I’m thankful for these opportunities as they keep me grounded and reminded how important the little things are in life.

Trip is starting second grade tomorrow and I couldn’t be more thankful. We are celebrating a year off chemo and a new school year! Love to all.