Kelleigh's Cause

Thank you everyone for your support and prayers. Kelleigh tolerated her procedure well. It was a long procedure and a lot of work was done with a lot more needing to be done. She is doing well. In true warrior fashion, Kelleigh wants you all to know that she is resoundingly committed to sharing her story, raising the necessary funds and continuing to work closely with the researchers and medical team in finding the answers for early detection, constantly improving treat...ments and successful drug therapy. We will do this!

Calling all prayer warriors. Kelleigh just went into what is expected to be a long surgery due to AVM progression. She continues to amaze us with her Faith and Courage. We are grateful to her medical team and know that she is in excellent hands.

Um... Nov 3rd?! I can’t believe it’s been a little over a year since my last hospitalization (aka photo 1). Last year, I had a quick little ER trip after my friends wedding due to my hand swelling, becoming more red, and getting warm to touch (photo 3). We left that day with no real explanation as to why except maybe it’s an infection from the chemo and here’s a prescription for some antibiotics just in case it is What upset me about this hospitalization is it was so quick.... Less than 12 hours before I was celebrating my best friend (photos 2). I didn’t want to be hospitalized. I had a life to get back to and I was so mad. I was supposed to be on a flight back to NYC. I was supposed to be preparing for my Physical Disabilities midterm, that I already asked to be rescheduled. I ended up crying in the hospital waiting room while drafting the emails to my professors explaining that I wouldn’t be in class the next day or taking a midterm due to being in the hospital and missing my flight home. When I think back now I realize it was the internalized ableism I’m still working through that made me feel that way. It was the fear that now I have to show the side effects of my AVMs and treatment. The fear that now I will be seen differently because I needed accommodations due to a flare up with my disease. I made it a year without having to reveal the disabled side of me to my teachers. But it shouldn’t be like that. Students shouldn’t have to be crying in the ER afraid of the backlash they may receive for explaining their needs due to a chronic illness. I shouldn’t have to prove myself as a good student DESPITE my AVMs, I’m a good student BECAUSE of them. Ableism is rampant throughout society and its always been apparent to me in the academic setting. We need to make it easier for our students to get the accommodations they need and create a safe environment where they can take care of their health AND continue their education. *steps off soapbox* But also, cheers to it being a year of having baseline swelling in my right hand with fluctuating redness & still no great answer because such is life with a rare disease

Zoom appointments don’t care if you’re on vacation but I’ve never seen an allergist before so

12 weeks later and I’m officially done with my level II fieldwork Completing fieldwork during a pandemic has taught me a lot about myself, my health, and what type of clinician I want to be. I had to make one of those life defining decisions earlier this year and those are never fun. I chose to officially leave NYC and come back to CNY, unsure if I would even be able to get a placement or what I would even do. Moving back to CNY was only part of like 5 out of my 100 potent...ial life plans let alone moving home early! But I definitely made the right choice. I put my health first and secured a placement at an amazing hospital. I learned so much during this time and truly will be a better clinician because of it. Im incredibly grateful for having such a supportive and exciting environment to learn in. I was able to see a wide variety of patients and meet so many cool people. I felt like I learned more about my CNY community each day. Medically, a lot has been decided these past 12 weeks. It’s always interesting trying to juggle the medical, academic, and social aspects of my life. In typical Susan fashion, her latest symptom has been bleeding. I’ve been dealing with this since March and in the past couple months it’s been happening less and less so thank you for the tiny blessings in life. She might bleed if I itched my scalp too much (my self control was really tested during this staph infection fiasco), if I bent down to pick something up, and even while I was sleeping. The first few weeks of fieldwork I was stressed about being an occupational therapist and now I had this stress of what would happen if I started bleeding while handling a patient. It didn’t help that in my second week I woke up with one of the worst bleeds I’ve had in awhile. I carried around gauze in my scrubs for a few days after that and started wearing headbands everyday just in case I needed quick access to something to hold pressure with. Thankfully, my fear never came true I’m so lucky to have had this opportunity and grateful to share my health experience with some of my patients. OT was definitely the right career choice for me

What have these bleach baths taught me? CeraVe is my best friend it’s been 2 & 1/2 weeks full of bleach baths for this itchy scalp and staph infection. I think that’s usually the amount of baths I take in whole a year! Alas, when your dermatologist tells you this is good complimentary medicine... you just... do it...? Well, I did it and I’ve been doing it and let me tell you it’s a process. First, I need to set up the bathtub with the proper bleach to water proportions. ...I soak my body, specifically trying to get my scalp, in the water for 10 minutes without soaking my face or getting any water in my mouth, nose, or eyes. Then I dry off a bit, walk through the house, and head to the shower. (My parent’s bathroom has a better bathtub but I have a better shower, hence using two different bathrooms for this). Then I take a shower to shampoo/condition my hair, use a moisturizing body wash, and compete any other shower needs. Finally, I use a different towel than the one before to dry off. Excessively apply lotion and usually treat myself to a face mask Besides smelling like a swimming pool and taking 45 minutes out of my day. This has actually been relaxing. I realized how peaceful baths are and it’s a nice bit of quiet time for myself. And I guess I’m super clean and treating a staph infection too???

We’re officially a little over a week into AVM Awareness Month and to celebrate here’s this thought piece I wrote!

What went well this week? I had my cardiology appointment this week! I didn’t even know I had this appointment until I got the call 48hrs before to register me thankfully it was scheduled late in the day so I didn’t have to leave fieldwork early! Besides the late notice, the appointment went well! My AVMs have the potential to put a lot of stress on my heart due to all the extra blood flow. This means I’ve also always been at risk for congestive heart failure and heart enla...rgement which is why I get ECHOs and EKGs at least twice a year and have been since I was 5. Now, I go more frequently because my chemo has potential side effects that could effect the way my heart functions. So I go to make sure nothing has changed and to document if something has. But anyways, what went well this week? Well, the cardiology appointment! No new changes and my heart is in tip top shape, which is something we always want to hear

There’s so many little things I do everyday to reduce symptoms from my disease that I don’t even realize. One is my bed. It’s hard to tell but the head of my bed is always elevated. My AVMs already make me a little prone to swelling all over my body but especially my face. I’ve always been told to sleep with the head of my bed elevated to reduce facial swelling overnight but tbh I’m not always compliant because it can be hard to find a way to accommodate this. One side effect... from my chemo is also swelling. Last summer I was waking up almost every morning with facial swelling and no amount of ice or elevation helped. The last photo is just one example of waking up with a suddenly swollen face. Since I’ve moved home, I now have some old books my dad has deemed he no longer needs lined under my bed to give it some height. I also sleep with a ton of pillows so I can raise my head even more

Is This What Healthy Looks Like? I live a life where I can easily pass as able bodied. With my short hair it’s a little more difficult, but still fairly easy. People are surprised by how many presentations of my disease there really are because I don’t show it. In part because I still have internal ableism but mostly there’s a part of me saying I can’t let on how disabled I might be for fear of the ableism still rampant throughout society. What you don’t see is the hea...daches, the swelling, the bleeds, the pulsating in my ear, the excessive fatigue, the body pains, etc. Its hard to conceptualize that I’ve been taking medications every day since I was 4 years old. That I’ve had around 100 procedures. That I go to the doctor at least once a month (sometimes out of state). Health shouldn’t have a look. There is no one way to tell if someone is healthy based on their looks. Just because you may not see an illness does not mean it doesn’t exist. There’s still a bias in the community, in our school systems, and especially within the medical community to not believe someone is sick because they don’t look it. All illnesses present differently in each person. One shouldn’t have to look a certain way to be believed

24 years ago today God made our family complete with the beautiful gift of you Kelleigh Marie! You came into this world with a bang and on your own terms! Sinc...e that time you have shown us all the true meaning of courage, resilience and Faith! We love you - our sassy, funny, never leaves a detail out of a story, Angel Warrior! You ARE making a difference in this world Kelleigh Marie despite everything you continue to go through! You are our inspiration and we love you with all of our hearts! Happy Happy Birthday Beautiful Girl!! The world is going to know your name, you are in the room where it happens and you will never miss your shot!

Please read! With a birthday approaching signifying another year down, I wrote this post to share the greatest wish for my birthday and start a birthday fundraiser -Lori (Kelleigh’s mom) https://docs.google.com//106WbzXrfwJy8rdw50K55jNydxrK/edit

Last minute oncology appointments No worries, all is good and healthy! We simply had an appointment time open up for a doctor we’ve been trying to see