Mission To Remission

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. 


According to the doctors the prognosis was really well at the time of diagnosis with 80-90% remission rate at the end of the first month of induction treatment. 
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…

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Mother

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.”

Scarlet Letter “P”

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.

#getthepiccture 


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

Get The Piccture: What I Have Lost and Found

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. 

4 YEARS. 

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. 

On The Move


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 

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.

https://ticktalksite.wordpress.com/

Get The Piccture: Be Kind 

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.


Join the Get The Piccture movement on Instagram @brianabeaver1