Gayla Davidson Medical Fund

ELEVATOR PITCH

The long version below tells a more in-depth tale if you would like to read more. Currently my sister and I are mom's primary caregivers. Her Stage 4 metastatic lung cancer is spreading and deteriorating her bones She started weekly transfusions to slow the progression. We have to travel 4-5 weeks in a row for the treatments. We are currently in a hospital in Houston. She had a TIA last night in the hotel. I called 911 immediately and she was taken to the nearest hospital. MD Anderson appointments/infusions are on hold. I am trying to get her transferred to MDA vs this teaching hospital. I am unsure how long I will be here. My sister has to leave tomorrow.

GOFUNDME REQUIREMENT

 

LONG VERSION

Without Her: February 2019

Christmases without her? Birthdays without her? Trick-or-treating without her? Mothers Day’s without her? Having another baby without her? High-School graduations without her? With each heartbeat, future events that would have normally included my mom played through my head. This time without her there. I can’t recall how many I imagined. The speed at which this alternate future flooded my mind and heart was overwhelming.

 

That is my only experience of my life flashing before my eyes. I always imagined that it would happen in reverse. I would recall the best memories made throughout the years, like watching a highlight reel.

 

One Time to Cry

I called my sister on the phone. We cried and cried. We lived in different states, but we were completed united in that moment of pain, fear, uncertainty, sadness, and confusion.

 

That was it. No more tears about the cancer. I decided I would have to cry another day because there was work to be done.

 

This was my reaction to learning my mom was diagnosed with stage 4 lung cancer. It had already spread to her brain and bones. It was only three months earlier that she started having symptoms. The regret I harbor for not taking her seriously at that time will always stay with me. The “what ifs” creep into my thoughts if I am not careful.

 

Through My Eyes

This is my mom’s cancer journey through my eyes, her oldest daughter. I rarely talk about feelings or emotions, let alone the hard ones. The ones that I try to keep from even myself. I have to remain strong, grounded, decisive, and the only way to do so is by keeping those feelings below the surface. Yet, here I find myself three years later confronting them because I have been humbled to admit I need help.

 

A New Curse Word

My cousin, Veronica, accompanied mom to MD Anderson for her first visit, which consisted of a lung biopsy. Mom called me while I was at work to give me her results. She simply said, “Well, it’s the C-word.” The c-word? Yeah, I would have to agree. C-word is right up there with the F-word. I drove to Houston the day after I learned her diagnosis. Mom, Veronica, and I sat in the small, sterile exam room waiting for the Neurology Oncologist to tell us the plan. I sat silently, expressionless. I stared across the room at mom. She sat on the high-back exam chair, composed, smiling, and nodding along as Dr. Woodhouse explained the Gamma Knife procedure required to specifically target the six cancerous lesions in her brain. Her cancer was treatable, not curable.

 

I quit listening to the doctor and just stared at mom, wondering how she could smile and nod along? Mom! Don’t you hear this doctor? There is cancer in your brain now. Mom! You are being told your Stage 4 metastatic non-small cell lung cancer is treatable, not curable! Stop smiling! Mom! You are going to die! Mom! Mom?……. It’s as if I was in danger and trying to scream for my mom yet I couldn’t make a sound.

 

Nervous Energy = Productivity

I had no clue what to expect. I made mom start wearing a mask around people (this was pre-covid.) We were unsure if she would be confined to her bedroom and having visitors in her house. My cousin and I cleaned and cleaned and organized and organized. I had to put all my anxious energy to good work. I could not make sense of or control the rest of my life, but her books would be in ABC order, the 50 rolls of undeveloped film would all be in one bin, and those pictures will be organized by year. Exactly what mom needed right now, huh? It was good for me, but it is3-years later and my mom still can’t find where I put things!

 

Unsolicited Advice

People mean well, but most people have no clue what to say to someone in our situation, especially in the South.

 

 Random Person: “Your mom is going to be just fine. God’s got this.”

Half-hearted smiling Kel thinks: How do you know that? What if he doesn’t?

 

 Random Person: “This is just part of God’s plan.”

Half-hearted smiling Kel thinks: Really? You know His plans? Do share.

 

 Random Person: “Your mom is going to beat this.”

Half-hearted smiling Kel thinks: You don’t know that.

 

These statements were always followed up with recommendations of what worked for their friend’s uncle’s cousin’s next-door neighbor. (sarcasm)

 

Don’t eat sugar. Drink this. Don’t drink that. Try this diet. Try this supplement.

 

Again, I understood the advice being given came from a place of love, concern, and/or desperation which is why I didn’t intervene at the time. We all love my mom and when there is an hourglass over your head, you will do anything to slow it down. And honestly, there was probably nothing that could be said to me that I would not have found fault in. I was mad. Mad. Mad. Mad. In my eyes, if this is part of God’s plan, He already knows the outcome. Yet, with either outcome, I will be reminded by the same people that this was “God’s plan.” I still can’t wrap my mind around that.

 

Mom’s Halo

The day of the procedure a Neurosurgeon screwed a metal frame into her skull. This was to keep her head in the exact position needed to radiate the lesions. Then she had her brain MRI to ensure precise positioning. Dr. Woodhouse came in and asked to speak to us. I knew something was not right by the way she couldn’t maintain eye contact. Dr. Woodhouse explained Gamma Knife was no longer an option as mom now had 29 brain lesions. We would have known this a day earlier and prevented the now unnecessary head accessory had a nurse’s error of cancelling her pre-screening MRI not happened. I did get ugly with the nurse that only wanted to give mom Tylenol for her pain when I knew Dr. Woodhouse had an order for Lortab for pain if needed. Mom was definitely the one with the halo on her head in that moment.

 

New Plan

Mom would now have 10 consecutive weekdays of whole brain radiation. My sister, Kayla, took mom the first week. My aunt and uncle came to help watch my barely 1-year old nephew while Kayla took mom to her daily treatments. I took mom the following week. My sister and brother-in-law kept Harper, then 3-years old, for the week.

 

On the last day of whole brain radiation mom got to “ring the bell.” I took pictures as she smiled the biggest smile and jumped up and down. A medication to help with memory loss was added due to short term memory loss being one of the many side effects of whole brain radiation. She continues to struggle with short term memory loss, but we find ways to accommodate. There are handwritten notes all over her house. A calendar with important dates written on it. She has a medication app to remind her to take her meds and if she does not check each med off as taken, I receive a text and I remind her.

 

Challenge Accepted

The following week, I lost my job of nine years. What else can I handle?

Two weeks later I found out I was expecting a baby. Life apparently decided to take my “what else can I handle” as a challenge.

 

Both events were destined to be blessings I could not see at the time. I was given the freedom to accompany mom to her appointments in Houston and mom’s upcoming grandchild was another reason for mom to fight. A few weeks later, my sister found out she was also expecting. This was a surprise as well. Two months prior Kayla had an ovary removed due to cancerous cells detected very early. Double blessings on the way and two more reasons to fight.

 

Mom’s hair started to fall out. That one was rough for both of us. She sat at the bar in my kitchen as I slowly brushed her hair and with each stroke more and more hair came out. I wished I could brush the cancer out of her that easily. I tried to even it out as best as I could with scissors, but it just continued to fall and I am far from a hairstylist.

 

 

$1,000 a Day if You Want to Live

Luckily, she did not need chemo. Tagrisso is an oral medication that is a targeted therapy for her specific cancer mutation AND her insurance through COBRA covered it. $30,000 a month for 30 pills. Yep, you read that correctly. That’s four zeroes.

 

I helped her get on disability and Medicare when COBRA ran out. Medicare would not cover the entire cost of her cancer medication. Mom’s cost would be $16,000 a month. Literally almost $600 a day. I was racking my brain researching charities, grants, etc. How in the hell could we find $600 a day to keep my mom alive? What a cruel, cruel world. Finally, I was able to enroll her in a program to get it free from the manufacturer.

 

Her lung tumor continued to respond to the medication and shrink. Every one of the 29 lesions in her brain disappeared. She continued to receive good reports and the doctors were amazed at how well she responded. It still astonishes me.

 

It Takes a Village

 

For almost three years, every 12-weeks mom had appointments in Houston. Luckily, we always found a way for her to get there. Sometimes a friend or a family member would be able to accompany her. A few times my sister and I really had to put creative plans together last minute to make it happen. One time we had adjoining hotel rooms. Kayla kept Harper, Kai, Liam, and Ian in the hotel room while I took mom to her appointments. Liam and Ian were not even crawling yet. Kayla is a supermom like that though. She entertained Harper and Kai by making up games with them.I was set to take her this past December and Liam ended up with Hand, Foot, and Mouth disease. Kayla’s husband was approved for emergency military leave so he could keep their children so she could take mom. Kayla drove 6 hours to Shreveport from Oklahoma to get mom and then 5 hours to Houston.

 

When I take mom to Houston, my village shows up. I am blessed to have strong women in my life that step up to assist my husband with dropping off and picking up three kids to three different schools, taking Harper to dance practice, and anything else we need.

 

My dad came in town February 7th because his mom, my Memaw, one of the strongest women in the history of ever, was in the hospital with major complications from a rib fracture. After a painful surgery, one week in ICU, weeks in rehab, she is back home. Dad has extended his stay twice now to put on his Grandude cape and keep Harper and Liam. Trust me. That is not an easy job. He has not complained once. I told him “You have one job: Keep the tiny humans alive.” It’s called “survival mode.” You can’t worry too much about the minor things.

 

The C-word is Smart

December 2021’s scans have yet again changed our course. Cancer is spreading throughout her bones.

 

I can see her struggling with things she had not previously. It is more taxing on her to walk long distances. The grandbabies are too heavy for her to lift.

 

The biopsy on a tumor in her left scapula in February 2022 revealed that it was the original lung cancer with a new mutation. That’s the thing about cancer and why we have not cured it. Cancer is smart. Over the course of 3-years her cancer learned how to adapt to the targeted therapy and mutate. This is expected around the 3-year mark.

 

Her oncologist said the next step is a new infusion to target this exact new mutation for patients with her time of cancer. This new infusion received fast-track FDA approval 8 months ago. Mom was super hesitant about this new treatment. Her oncologist agreed to review the results of her upcoming PET scan and decide if she should proceed now or if the cancer was stable enough to radiate the two spots and hold off.

 

It is difficult to construct a plan when you have so many unknown factors. Once again, I had a lot anxious energy to put to use. I found two things I could do. My entire house has been organized into labeled bins in every cabinet. Should I need a battery, paperclip, or 3,000 crayons, I know exactly where to look.

 

I spent hours after the kids were asleep researching this infusion. I read the actual published study, whitepapers, and news articles. I felt confident this was the way to go and go now.

 

I pulled up every PET scan from the past 3 years. I’m no radiologist but I have a degree in Radiologic Technology, worked in as an x-ray tech so I know where all 206 bones are and I can’t orient the images to her body. For 2 or 3 nights in a row stared at these scans. I have them memorized. I know where the brightest spots are. I compared the FDG uptake in each area over the past few scans in an attempt to extrapolate out the rate at which this was progressing. This was all I could do. Research the infusion and try to find a mathematical cure for cancer at 2:00 am sitting at my kitchen table.

 

I’ll Say or Do Anything

Thursday, March 10, 2022 at 9:40 am at MD Anderson in Houston, TX

 

This is the exact date, time, and place I lived through the most emotionally challenging day of my life to date. I am not ready to shape that experience into words yet. In short, the PET Scan from the day before showed around 8 major areas compared to the two areas 12-weeks prior. The only options at this point are the targeted infusions or chemo.

 

For the first time I saw my mom break down. I saw her brilliant blue eyes fill with tears. The hands that cared for me for 38- years were trembling. The events of the next two hours are cannot yet be put into words. I wanted to wrap my arms around her but I knew if I did I would break down and tell her we would do whatever she wanted.

 

It took two hours for me to convince her to sign the consent. I finally had to get very firm and told her “Mom. You are dying whether you get the infusion or not. This infusion is your best shot to live. Your children and grandchildren need you. We are at MD Anderson with the best research, care and treatments available. We need to trust in their decision for you and not take on that burden and make one out of fear. You write on Facebook all the time about your mustard seed of faith. It is time to do just that.”

 

She was worried she would not be able to have people accompany her consecutive weeks to MDA. I told her not to worry about that. We would do whatever it takes. In that moment, I would have vowed to fly her to Houston on a golden unicorm.

 

She signed the consent. She did amazing with two days of infusions.

 

Mom posts frequent updates on her Facebook group about her progress, and she remains ever faithful to God. Her posts are always positive, encouraging, and uplifting.

 

When you take off the rose-colored glasses of Facebook updates, you see two sisters doing whatever they can do to help their mother and leaning on each other at the same time. All while trying to raise families of their own.

 

Kayla

Kayla’s kids are Kai (almost 4) and Ian (2). Kai has weekly Speech Therapy and Occupational Therapy sessions and just started playing soccer. Her husband is in the Army and they are currently stationed in Oklahoma. She does what she can from a distance. The greatest thing she does is support me. We facetime over coffee every morning after the kids get to school. It is our mandatory sister time.

 

Kellye

I work from home. Liam is 2 and goes to Mother’s Day Out. Harper is in 1st grade. Conner is in 7th grade and Austin is in his Freshman year of college. My kiddos are all in very different stages of life.

 

The reality we are faced with now is this:

We must get Mom to Houston once a week for the next 4 weeks for these infusions. Mom’s monthly expenses exceed her income, so Kayla and I have taken on paying some of mom’s bills to help her out. Due to the travel to Houston, hotel stays, gas, food, medical bills, etc it is very difficult.

 

Lessening the financial burden will alleviate so much stress, anxiety, and uncertainty.

 

I understand money doesn’t bring happiness, but lessening the financial burden will allow us to focus on mom, meeting her needs and making sure to lighten her spirits.

 

I have NEVER been one to ask for help. This account was very difficult to post but I have been humbled to the point to admit I need help.

 

UPDATE

I wrote this yesterday on March 17, 2022, and now we find ourselves in another impossible situation.

 

My sister and I arrived last night at the hotel in Houston for her scheduled infusion. She began to act funny, slurring speech, losing words, numb lips, headache. Etc. I called 911, and she was transported to the nearest hospital. By the time I arrived, she had snapped out and seemed back to her normal self. Today, she is slurring her speech again. I am in the process of getting her transferred to MDA.

 

I am unsure of what the rest of the day holds. I don’t know how long we will be here. I have to arrange to get Kayla back to Oklahoma, food, possible hotel, and likely more unplanned events.