Well my good friends, today is my 1 year anniversary! As of today I am officially CANCER FREE for an entire year! Can you believe it’s been 12 months since that utterly insane surgery where they put my leg in my face? I can’t believe it either. When Weinstein gave us the all-clear last month I don’t think I’ve ever seen him so happy. He is not one to wear his emotions on his sleeve (although I do believe that I have broken him in a little bit with my wisecracks) but he was grinning from ear to ear and he said “everything looks great! The scans are beautiful!” and after a short conversation and discussion of a follow up in 4 months he sent me on my way. It was the conversation I've been waiting for for 2 years. I was just so overwhelmed with relief that I started to cry (what’s new) and he gave me a hug and literally ran out of the room because he was crying. I KNOW HE WAS. He loves me and I love him and he saved my life and he knows I could not be more grateful.[...]

Hello my people.

I realize that most of you have no idea what’s going on because I haven’t written for so very long and there is so much to tell you. I also realize that I’ve been hiding out. But I am doing the best I can with what I’ve got, just like everyone else, so I’m stepping out into the light a bit. Only the people that have seen me in person know what I look like and I have requested the no photos of me to be posted on social media because I am pretty self conscious. [...]

Ohhh I am so far behind in updating all of you wonderful people and I apologize. I'm just a little behind on life. Things over here are moving along, although definitely at a slower pace than I would like. The hospital bed in the dining room is gone, as is the feeding tube and the nursing visits are done so I don't feel like a patient on a daily basis, for which I am grateful. I started driving again so that's another step in the right direction. The super great news is that the tumor and cancer are gone and I will not need radiation or chemo which was the best news we ever could have heard! When my surgeon told us (my mom and sis were with me) that he was able to get everything and the margins were clear there were lots of tears and hugs with him and my sweet nurse and each other and it was such a huge sense of relief. Amen, everyone. A-freaking-MEN. I'll continue to get scans every 3 months and I actually have the first set scheduled for a few weeks from now so of course there is anxiety there that it will show up somewhere else, but the chances of that are slim. (Then again, the chances of any of this insanity happening were slim, so who the hell knows. I'm just not going to stress about the unknown.)
What lies ahead are several reconstructive surgeries to fix my face, which honestly looks better than we thought it would but definitely needs some work. When they created the new jaw from my fibula and added the skin graft to serve as the roof of my mouth, it all blended and healed together. It's really hard to explain, but you normal folks can move your tongue from the last molar on the right along all of your teeth to the last molar on the left (I know you all just did that) but I cannot because the new gum healed to the inside of the lip. There's probably no point in trying to explain it but the reconstruction involves "releasing" the lip, implanting screws to the new jaw that will ultimately hold hooks that will hold dentures. It is NUTS. And after that they will fix my nose which, as of last week, lost the cartilage between the nostrils so now it's basically a hole in the nose. I couldn't make this stuff up if I tried. AND I need a root canal done on one of the two remaining molars I have on the top right AND I need invisilign for the bottom teeth to create and maintain a perfectly aligned bite. Can you believe it? When they told me they needed to make the bottom teeth straighter all I could picture was Tutti from the Facts of Life with her braces and headgear. WHAT IN THE ACTUAL FUZZ IS HAPPENING?!?! I alternate between laughing and crying about it because it is just so insane. I am tired of it though, really. Enough already.[...]

Hey gang o' mine, I hope this finds you all well and that you had a wonderful holiday surrounded by loved ones. Our holiday did not look the way we had imagined it, but it was most definitely filled with love and that's really all that matters as far as I'm concerned. Surgery on 12/15 went well and we just received word yesterday from the surgeon that the pathology results are back and there are healthy margins around the tumor which is SPECTACULAR news! We still don't know exactly what that means as far as further treatment goes, but the fact that they got everything out is a huge relief. We will find out more about the next course of treatment over the next few weeks. The results of the surgery have left us optimistic about my appearance, as well. I think that everyone that has seen me would agree that I look significantly better then expected. I guess an entire bone from my leg (and10 hours) gave my magician of a plastic surgeon all that he needed to completely re-create my upper jaw. There will be quite a few surgeries ahead but the ground work has been done and I am grateful and relieved. There is still lots of swelling and 2 incisions on my face that need to heal (as well as an incision that runs knee to ankle on my left leg) but I am feeling really good about the direction we're heading. I was able to come home on 12/23 after 8 days in the hospital (which involved a struggle to manage pain, a difficult tracheotomy, precious nurses, a room with a stunning view of Philly and strands of white twinkle lights, Christmas music and an extra bed where I was lucky enough to find a loved one every single night). It has been a challenge, but Nurse Nancy Pants (NNP) and I are finally settling into a schedule here at home. We have a hospital bed set up downstairs and are managing the feeding tube and meds every few hours. The first few days we were like Lucy and Ethel in the chocolate factory but we have found our way with the support of each other and others, especially my sister (who has been an absolute rockstar from day 1). Ok, im about to crash so I will sign off. Thank you for your cards, gifts, meal trains, jokes and funny you tube videos. You continue to support me in ways I never could have imagined. Happy New Year to all. Xoxo, Kaytie

Hello, this is Kaytie's sister Colleen, and mother Nancy. After a very long 10 hour surgery yesterday, both surgeons felt the surgery went as well as possible. With the common issues of pain and nausea now more under control, she's on the road to recovery. Today she had physical therapy ( my favorite😉) and got out of bed and up in a chair for an hour. There are lots of tubes and lines to manage and they are monitoring the skin and bone graft very closely this week to assure success. We are all very greatful for such an amazing medical team and for the continuous outpouring of love and support from so many. We couldn't do it without you! This is going to be a long recovery so keep it coming! Xoxo C & NNP ( nurse nancy pants)

Hi friends,

I want to let you all know that I had surgery last week to biopsy a tumor growth in my mouth that I felt the day before Thanksgiving (and literally EXACTLY a year to the day of my first surgery, which is totally insane).  The results confirmed a recurrence of the cancer and I will be going into surgery tomorrow morning to remove another tumor in the maxilla. My head surgeon will be removing the other half of my upper jaw and some bone that supports the nose, so I will only have one molar left on either side. The plastic surgeon will then jump in and remove the fibula bone from my leg and from that reconstruct the jaw (I don't fully understand how, but I know titanium plates will somehow connect it to my cheek bones and they will eventually grow together). There is a chance of a facial deformity due to the removal of the bone under the nose, but hopefully they can fix that somewhere down the line. The entire surgery will take about 10 hours and I will be at HUP (Hosp of the Univ. of Penn) for 6-7 days. I'll have a feeding tube for a little while and God knows what else is involved that I don't even know about.[...]

Woohooooool! YOU GUYS! This is very exciting news, my friends. VERY exciting! It's been a bit of a roller coaster since my surgery because at my first post op appointment I was told "the good news is, the tumor is gone and the cancer is gone but there is some residual abnormal bone that needs to be removed because it may increase the chance of recurrence and there is a good chance you will end up with a facial deformity." WTH? So that was a bit of a punch in the gut because I was so, so hopeful that this last surgery was the last one and the thought of having to do such an invasive surgery as a preventative measure when the cancer is already gone just doesn't sit right with me. Oh, and that facial deformity part....I mean, how does one even begin to process that? Another doc wants me to consider radiation and another one feels that as long as I am followed closely and scanned every 3 months any recurrence would be caught early, therefore surgery/radiation may not be necessary. There is about a 10% chance of recurrence so the odds are in my favor. I am not going to make any decisions just yet and will continue to get more opinions from Osteosarcoma specialists at Sloan Kettering and Johns Hopkins. I turned a corner last week and am finally starting to feel more myself. Still pretty tired, but heading the right direction. My body has been through the ringer a few times over the last 7 months, so I need to be a little more patient with my speed of recovery. I feel like I am moving at a turtle's pace but I think that's just how it's going to be for a little while longer. I am heading down to a little cabin in the Shenandoah Mountains for a getaway this weekend and I could not be happier! I won't be able to do much more than sit on the porch and read a book, but I am looking forward to the change of scenery and fresh air. Ok, that's all folks. Thank you for your continued love and support. You are rockstars. Xoxo K

Hi All, It's Coll! So Kaytie spent the night in the ICU because she was very sedated and had difficulty remembering to breathe without cues. She did not need to be intubated, but needed constant monitoring. Her pain has been relatively under control. Still some major issues with nausea but much more alert today. They will need to keep her at least one more night. Thanks for your support, I'll be in touch! Here's a little entertainment for you from pre-op... http://youtu.be/zD46hIIitC8

My dear people! 

I have been totally off the map for the majority of the last few months and I am sorry for not popping in more often to bring you all up to speed.  There have been a few bumps in the road but the light at the end of the tunnel is peeking through:)[...]

You guys...I'm halfway through chemo! Act I is over! Isn't that so hard to believe? AND today marks 3 months since I had my surgery, which is just crazy.  In some ways I feel like this insanity just began and in other ways it feels like it's been going on forever. It's a very strange place to be...this feeling of being in limbo while everyone goes about their normal lives.  But I know this isn't forever and can honestly say that (99% of the time:) I feel nothing but absolute gratitude for all that I have.  A warm home, supportive family and friends, wonderful doctors, health insurance, Netflix (hellooooooooo House of Cards Season 3 in TWO days!!)...I really am so fortunate and seriously count my lucky stars each and every day.[...]