|
A little less than two years Madison started specialized treatment in Boston... a long road. She and her family were privileged to stay at the American Cancer Society (ACS) Hope Lodge for 5 of 14 weeks while Madison was receiving treatment in Boston, and had the opportunity to attend an ACS fundraiser. Today Madison was a featured speaker speaking kicking off the ACS 2016 'Relay for Life' in Camarillo California, Now and them... paying it forward for the Hope Lodge and American Cancer Society.   Yes, that is a real police care and yes, that is Madison... about 2005 So how is Madison today? Hungry! She hasn't eaten since October 19th! Tube feeding is a major hassle, 60 syringes in to her feeding tube daily. She re-started college on Monday, another wooo hooo milestone! She is also better able to swallow ice chips and while perhaps seemingly insignificant, it's a huge step forward! She's taking mostly the same classes that were ripped away from her last October. but all new people. Dad is trying to convince Madi to walk up to the cutest guy with the most tattoos and say "why are you staring at my scars!" He'll of course deny it and feel bad wondering what happened. Next step would be "tattoo's are for sissy's, warriors have battle scars.... how about some lunch!" Over lunch, "really, you're going to eat in front of me, and pull out her feeding tube". She hasn't subscribed to that approach yet, but it'd be a highly confident ice breaker :-) Oh, the pic. We were at Pierce College at a farming event when Madison was about 10. There were paramedics, firefighters, police officers with all their cool vehicles. I whispered to Madi "hey sugar, climb in that police car, hands behind your back, look very guilty..." this could be a Kodak moment! She asked if she would get in trouble I said "yea, they'll probably arrest you", so she climbed it. I had that picture in my office for years! People would ask "is that your daughter" to which I replied "used to be". I'd let them off the hook eventually. When she was about 11 Madison and I met someone for dinner: he had seen the picture and knew the real story. He mentioned to Madison that he had seen the picture in your dads office and asked what she did. Her response, "graffiti". She's still a smart alack. Feeling particularly spunky today Madi asked if the scar on her wrist looks weird, "touch it right there dad". I touched it and she screeched as if in pain, then a huge smirk. Faker! We were both rolling with laughter! She's got me twice now... Payback her way comes. So how's Madison?! To recap, Madison had major surgeries in October to repair a hole in her throat, we could see blue titanium. Skin and arteries were harvested from her wrist, and a neurosurgeon, ENTs, and a plastic surgeon opened her neck from Adams apple to her ear, and sewed the tissue to her throat and connected the arteries. Prior to the surgery the doctor asked Madison which wrist are were going to pull tissue from. Dad spoke and pointed saying "that one" (at her mom's wrist... mom would have gladly offered it, Dad and Angela too, but wasn't an option) She still can't eat food or drink water, so it's all stomach-tube feeding and 'drinking', about 55 syringes a day. This has been a tough and slow recovery. While the long term outlook for her swallowing looks good, she may require a 'procedure' in January or February. Madison seemed to have an interest in flying a small airplane, so for Christmas she was given an introductory flight lesson, one of one. The instructor took off, Madison flew above Camarillo and Oxnard, then along the coast returning to the airport. On the drive home Madi asked about skydiving. Swell. Several people asked if she landed the plane. Given it was only about an hour of her flying and she did amazingly well, the instructor landed the plane. Could she have? Confidence was really high that if she tried to land, she could probably hit the airport. Literally. Happy New Year! Thank you for your love and support, The Jones'  |
Categories |
