Brave. Strong. Superhero. Inspirational. Extraordinary. Miracle. For the entirety of my existence, others have tossed these words at me like pebbles into a stream. In what is likely an attempt to congratulate or anesthetize a socially uncomfortable situation, I have come to feel dehumanized by these culturally appropriate scripts for interacting with others that have chronic illnesses or disabilities. Being artificially elevated to fantastical status simultaneously trivializes the challenges of my reality while also reducing me to them.
I believe to honor somebody with authentic justice is to accompany them, if only in our minds, along whatever path they are traversing. As I reread the whirlwind of Kaylyn’s diagnosis of leukemia, multiple treatments and side effects, I try to be there for the pain and also for a pathway to vibrant health. We are by your side, cheering you on to remission @lesleywhite21
⭐️ Without further ado, here is Kaylyn’s Get The Piccture
Kaylyn was admitted to MD Anderson on December 20, 2017 with a elevated white blood cell count, and diagnosed December 21, 2017 with Acute B Cell Lymphoblastic Leukemia.
However, after the induction phase of treatment Kaylyn didn’t respond to the therapies and failed to obtain remission. She was in the 2-3% of patients who did not respond to treatment.
The first month Kaylyn underwent an aggressive regiment of treatment daily steroids, chemotherapy every 4 days, lumbar punctures, and bone marrow biopsies.
The leukemia doctors went ahead and proceed with the second month of treatment even though she failed the first one. The consolidation period consisted of more lumbar punctures, and weekly and daily chemotherapies.
During this time Kaylyn developed side effects from some of the chemos which have resulted in severe nerve pain, and vision and hearing issues. After this period she was still not in remission.
The doctor suggested we try a new treatment that was just released in August of 2017 by the FDA for Acute Lymphoblastic Leukemia patients. This treatment is called CAR-T we began preparing for this and Kaylyn had a central line placed for the collection of her T cells.
Once they collected enough cells they sent them off to be engineered with a inactive HIV virus which programmed them to attack the leukemia cells in her body.
She was administered the CAR-T April 26, 2018 and was in the hospital for 41 days so they could monitor her closely. She was in ICU for 7 days.
The side effects of CAR-T can be severe and life threatening.
Since day +3 she developed tachycardia and was just having issues with her heart rate dropping and elevating.
May 8 she is day +12 since infusion and she was feeling really bad. Headaches, stomachache, low blood pressure, and elevated heart rate. She is being monitored closely and hooked up to oxygen and heart rate monitors.
On Day +30 she went for a bone marrow biopsy which told us that CAR-T was successful. We are now getting ready for bone marrow transplant which is scheduled for July 26.
Since my world became drastically smaller six years ago, so too has my mom’s. Being homebound and often times bedbound, without the use of modern technology unleashes a kind of silence that boasts an imposing presence. Because TV and computer electromagnetic frequencies make me very ill, she and I often just spend time existing. During a recent evening of existence, I recognized again how this solitary confinement has sequestered her natural proclivity towards socialization. Always friendly, outgoing and supportive, I wonder in how many ways our isolation has broken her as well. I asked her to tell me what she would envision a supportive friendship to look like for her these days, and she is just as solitary as I am.
“I don’t remember what that would mean anymore. It’s been too long since I’ve had a friend.”
Just five months into living with a central line and already Saylor @thatkidwiththeunkepthair deftly illustrates what life on the line is like for her. Thank you for your willingness to share! We are wishing you continued healing and well-being.
I live with a Port due to my POTS (postural orthostatic Tachycardia Syndrome) and needing IV fluid infusions multiple times a week. I’ve had it since February 1st, 2018, and have been receiving my IV infusions since October of 2017.
I have a love-hate relationship with my line. It allows me to receive treatment and allows me to feel my best, but at the same time, it reminds me that I’m not normal. It reminds me that I’m living with an incurable, progressive genetic disorder and all of its friends. It reminds me that I’m different.
I wish people knew, and understood, what I go through on a daily basis. I wish people understood that I don’t want this; that I would change this if I could.
I wish there was more understanding for those who live with Central lines. Until there is, I’ll make my own advocacy, and rock at it!
I have received such a wonderful influx of the submissions that I am sharing them double time on Instagram. Please head on over and let me know what you think of the movement so far by leaving me a comment! @brianabeaver1
My sincerest gratitude to Mikayla for giving us a rundown of what a day in the life with a central line means for you for Get The Piccture. Can you imagine what degree of patience, diligence and adaptability that cohabitating with a PICC line each and every day for four years must require? This is no easy feat! Way to go Mikayla!
I can’t believe it’s already been four years living with a PICC line, all thanks to Lyme disease.
1,000(+) days of infusing IV antibiotics, vitamins, saline, IVIG, and ozone.
I have 3 scars ( + 1 where the PICC is now) branded on my arms so I may never forget all it’s taken, but also all it’s brought me.
It forced me to leave Nursing school, destroyed relationships … but it has kept me my life and introduced me to some of the most beautiful souls in the chronic illness community.
How could I not be grateful for that?
To be able to show someone else that life with a PICC isn’t all bad gives me purpose.
A purpose I’m grateful for.
The amount of backlash and judgement around having a central line is sad, ugly, and hurtful. What works for one person may not work for the other – something I think we all need to be reminded of.
I think it’s important to break the stigma and I’m looking forward to taking part in that by sharing my story of living with a PICC line.
Ta da! The #GetThePiccture flyer has arrived! Thank you very much to Brenda Frederick for donating your skills to support this awareness campaign! Please share and help spread the word, spread awareness and spread empowerment! Those with any and all health conditions and types of central lines are welcome!
Head on over to Instagram @brianabeaver1 to find out more about this adorable kid, the one and only Legend!
This face. I cannot distract my mind away from this beautiful face. I have received several submissions for Get The Piccture from families with children that are currently undergoing treatment for cancer. Get The Piccture is an awareness campaign I began to empower those living with central lines by providing them a supportive venue to write a vulnerable story about the complexities of living with a PICC line or port ( https://ticktalksite.wordpress.com/2018/04/08/592/ )
I recently received a submission from this beautiful child’s mother. Kamila was diagnosed just two weeks ago. Understandably, her family is experiencing a profound dismay while attempting to navigate treatment, during which Kamila’s mom says she is “hanging tough.” For families such as these, I would love to offer a symbolic token of support and understanding. I am looking to collect gifts and goodies: anything from PICC line covers, hats, specialty crafts, children’s books, teddy bears, etc. If you would like to be involved with this project, please let me know! We are all in this together!
Ways you can help:
1. Contribute a gift!
2. Reblog, share or repost on any form of social media.
3. Send this to companies, crafters or artists you know that may want to be involved.
Follow me on IG for more @brianabeaver1
ticktalksite | Tick talk, around the clock. Because Lyme disease never takes a day off.
Among the aspects I appreciate most about Victoria Bolls’ feature is her candidness in revealing the unsavory social consequences of living with a central line. She explains careless and ignorant commentary I believe many of us can relate to. Thank you, Victoria, for addressing salient social consequences of vascular access and for sharing some of your journey with us all.
I have a love/hate relationship with my port. Having a port has giving me my life back by allowing to be receive the treatment I need. I’ve been taught how to care for it which has given me my independence back. But it has also been infected twice, the last time landed me in the hospital for five days. I get picc lines between ports and my latest picc caused several blood clots. I hate the stares, the questions, the scars. Though I love that it allows me to take care of myself and lead as normal of a life as I can. I really wish people wouldn’t assume just because I have a port that I can’t participate in life or have fun. Because I have a port I CAN participate in life. Also if a person tells you that they use their port/picc for hydration, don’t be an idiot and ask them if they’ve tried drinking more water/Gatorade/coconut water. That’s probably the most annoying question I get asked and surprisingly it’s usually by medical professionals. If a person has reached the point of having a central line to assist them, it means they have exhausted all other options.
“Sometimes things don’t go right during access but the pain and fear I feel only last a little while. Then I forget about it when the needle is in.” — Judi, 8 years old, advocates with her motto, “NEVER give up!”
Let’s show Judi @judithmariesjourney our support, encouragement and boundless love by leaving her a comment below. We understand your journey, honor your feelings, and believe in your awesomeness!
Much gratitude to @judithmariesjourney for sharing with us a snippet of your journey to remission. We are honored to cheer you on!
Parents of children with central lines are encouraged to participate! Please send me a message to join the Get The Piccture movement on IG @brianabeaver1
I’m pleased to share with you this Get The Piccture feature by Abby. What is Get The Piccture? Learn more HERE. With one glance at the photo below, Abby’s spunk, strength and confidence are evident. What an honor it is to share her perspective. Cheers to you, Abby!
To submit your own feature, please contact me via Instagram @brianabeaver1
Having to get a central line has been both a blessing and a nightmare. I avoided it for so long but knew the day was coming. I first had a PICC line in my arm and now have a Hickman power line in my chest. Though it is nice not to have to be poked multiple times and being able to stay out of the hospital more often having a central line is not all sunshine and roses. It’s kind of like a love hate relationship. I’ve had a central line for about eight months now and I’ve battled sepsis twice. It’s crazy to think something that saves my life almost took my life.
I have a central line because I do daily lactated ringers fluids and saline fluids three times a day, daily medicines and sometimes antibiotics. I have a lot of health issues but some of the more serious ones are gastroparesis, POTS, SMAS, crohns and EDS. The one thing I dislike the most about my central line is the up keep of it. I’m not allowed to swim or get it wet so showering is a nightmare. I’m not allowed to do certain things I used to be able to do before getting it, but I don’t let that get me down. I hate having to have a central line, but it saves my life and keeps me out of the hospital so I’m grateful to have it despite the negatives of having to have one. Also, I wish people knew just because I have a central line and feeding tubes, it doesn’t make me a different person. I’m still me. I’m strong, brave and a fighter. I don’t let my illnesses or medical devices define me as a person.
To learn more about the amazing Abby and to view additional photos, follow me on Instagram @brianabeaver1