“If possible, avoid being a bubble; for a bubble, even the gentlest touch is fatal.” -Mehmet Murat Ildan
Back in March 2019, Reign was diagnosed with Pulmonary Fibromatosis—a condition that causes fibrous tumors to grow within the lung tissue, air passages and on the lungs surface. At that time, the largest of the tumors was just under 2 inches in diameter and the only time they presented issues were when Reign contracted a respiratory illness. We were told that her steroid usage had to be limited and closely monitored because they contribute to tumor growth. But we soon found out that limiting her steroids affected her breathing which caused her to need high emergency doses of steroids as well as a short course after the exacerbation which caused her to be at higher risk of infection. We found that she was getting sick every time we went to a doctor's appointment or were around more than a few people. It was a vicious cycle that we just couldn’t seem to break out of. By December of 2019, some of the tumors on the outside of Reign’s lungs doubled in size and many more appeared within the air passages putting us in a very tough spot. Some would say that the obvious and easiest intervention is to operate and remove the tumors. But because of the location, size and depth of the tumors within the lung tissue, surgery would be anything BUT easy and require a dangerous amount of lung tissue to be removed possibly putting Reign in the position to need a lung transplant. So, I did some research to find alternative treatments that would at least stunt the tumors growth and still allow her to take steroids if needed. After weeks of scouring medical journals, reaching out to various pulmonologists and oncologists, we were only left with one option: Radiation therapy. Our pulmonologist agreed that fibromas have been proven to respond to certain types of radiation and the side effects seemed far more tolerable than the alternative open chest surgery. He put me in touch with Oncology Radiology who scheduled sessions as well as educated me on how to care for Reign as she underwent radiation. There was just ONE problem: Insurance approval.
Unfortunately, our insurance carrier deemed radiation therapy as an experimental treatment for all benign tumors, including pulmonary fibromas. Having a background in medical billing, I had already fought for Reigns oxygen therapy needs an, Synagis shots and the lowering of her NICU bills. So I was more than confident that, with some research and perseverance on my part, that I could appeal this decision and win. After a month of appeals, I finally got our insurance company to cover this procedure as a Tier III procedure which has a deductible that’s due upfront and equates to 20% of the total bill. I was more than fine with that and thought “Radiation can’t be THAT expensive. I’m sure we can come up with it.” Her doctor submitted the plan of care with the specific type of therapy, number of sessions and cost per session. And I soon learned just how expensive radiation truly is. We didn’t have that kind of money in our savings and with us having one primary income, I knew that it wasn’t something we could quickly raise. After the advice of my family and friends and much prayer, I began a PayPal pool to raise the funds. And within a month we raised about 90% of the amount we needed. During this time, we continued to monitor her tumors and found that they had grown tremendously which worried our pulmonologist to the point that he was ready to rush her into radiation that same day. But I expressed to him that we still weren’t financially cleared. He then graciously agreed to put in paperwork for a financial override delaying payment for his portion of the bill so that we could begin her radiation without any additional hinderances. And on February 24, 2020 Reign went in for her very first radiation session.
My husband and I were prepared for all the side effects that we read up on and had stocked up the house with Pedialyte, popsicles and Reign’s favorite foods. She went to two sessions within that first week, and outside of not being thrilled about being held in one position for over 45 minutes, she seemed to be tolerating it very well. During her second week of treatment, we first noticed skin changes around her radiation tattoos (normal side effect) and then she spiked a fairly high fever. I gave her Tylenol as well as Pedialyte and continued to watch her temperature. But I quickly realized that her fever wasn’t responding to the medication so I switched to Motrin and called the Oncology nurse hotline for advice. They told me to continue to watch her temperature and if it still didn’t budge after that last dose, offering cool Pedialyte and a room temperature bath to bring her in. Things went from concerning to frightening as her temperature spiked as high as 105.4, she began to shake, wouldn’t eat or drink and was very lethargic. We rushed her to the emergency room where we learned that she had developed Radiation Pneumonia and were advised to halt her sessions until she could follow up with Pulmonary in 2 weeks. She recovered very well and was given the clearance to restart radiation. Two days before she was due to restart radiation, COVID-19 cases spiked in our area and 3 doctors within the hospital had tested positive. The next day that number climbed to over a dozen hospital employees and hundreds within our area. We then made the decision, with the blessing of the pulmonologist, to reschedule, isolate her in our home and watch the numbers. Day after day the numbers grew and so did our fear of the unknown aka COVID-19. Days turned into weeks, weeks into a month and a month into FOUR.
“You know nothing about pain. You know nothing about reality. All you know is what’s inside your bubble. Well, I’m the needle about to pop it. Just you wait!”
--Caspar Vega, Hayfoot (The Young Men in Pain Quartet, #4)
But during this time at home, something amazing has happened-- NOTHING. No fevers, no desating, no blue spells, no ER visits...just PEACE! It was as if the pandemic gave us back our dreams of our daughter living freely without fragility or medical consequence. Sure, we had already isolated her from October to March, but it wasn’t a strict quarantine like this where she literally didn’t see the light of day except through our patio. Daddy was also set up to work from home due to pandemic shutdown, so we were able to spend a lot more time as a family that we previously had to plan out due to his hectic schedule. It was almost as if we had found that proverbial bubble that we all dream of and had set up shop in it. Day after day, I waited for the bottom to fall out—a cough, fever, even a wheeze. But she continued to do amazing on her regimen of medications. The only issues she’s encountered are seasonal allergies and a stomach bug, both of which were easily treatable. We’ve remained in touch with both pulmonary and oncology during this time, who are all amazed at how well she's done. About a month ago, pulmonary suggested that we bring her in to get an xray & CT of her lungs to see if there’s been any tumor growth. I expressed my apprehension but said that I would bring her in soon. I can be honest and admit that I’ve stalled and still cringe at the thought of bringing her into a hospital that I know houses the critically as well as the unknowingly ill--and thats just COVID-19! All the other life-threatening bugs (as simple as the common cold for Reign) still exist and threaten her health. To be frank, I just don’t trust anything outside of our “bubble” regardless of the numbers and recommendations of others. Despite how optimistic I’ve become, I am still a realist and had a feeling that something was going to disrupt our euphoria by raising a pin to our proverbial bubble. I had no idea that it would come in the form of my child's attention span.
Reign has continued her weekly speech therapy sessions throughout the pandemic via Telehealth but it's become increasingly more difficult to keep her engaged. My husband & I have invested quite a bit of money in educational tools and toys, have transformed our home as well as researched additional ways to help mimic the clinical environment. Hundreds of dollars and hours later, we’ve realized that no matter what quality materials you put in front of them two-year-olds just aren’t meant to sit in front of a screen for an hour and absorb information (lol). In talking with our speech therapist, we found out that she’s been taking on-site appointments for a few weeks now due to the precautions the facilities are taking. She also put me in touch with another parent whose child has been coming in the office all this time as well as doing virtual sessions weekly and her child's progress made me wonder if that was a good model for us. Our therapist agreed that this was a great model for Reign that she was going to present but was apprehensive given Reign’s medical history. As much as I’d love to keep Reign in the house forever, I know that it's not realistic and, in this instance, it’s not beneficial to her educational growth. I had to realize that we’ve hit a plateau in Reign’s progression and to overcome it, we must do something radical. Here was another confirmation that it's time. Anyone have a pin I can borrow?
No sooner than I schedule this first in-office visit, I get a message from a dear friend (who used to work at March of Dimes and now works at our hospital) asking if Reign has been back to any of the hospital's facilities or would be interested in going back. I shared that in fact we would be going back and laughed internally because I felt like another nudge out of the bubble was coming. She proceeded to tell me that the hospital is looking to follow families on their return visits to hospital campuses and thought that my family would be perfect for it. If you’ve been following our family for any amount of time, you know that our family is an open book. We don’t mind sharing anything that can be an answer for someone. SO, tomorrow afternoon we will be documenting our thoughts as we burst our bubble and take Reign to an onsite appointment. Camera crews will be following us on location to document the safety precautions in place as well as to get our opinion on whether other families should consider bringing their children in for their overdue immunizations, appointments, procedures and the like. In short, thousands in the District of Columbia will be watching as our family bursts our bubble and ventures out to learn our “new normal”. But we are also going to be taking the first step to restarting Reign’s radiation therapy by taking her in for updated scans.
I’d be lying if I said I’m not scared, worried or apprehensive about launching out into the unknown. But I also know that it’s not wise to tempt fate. Though she’s been blessed to be asymptomatic, we have also seen just how quickly things can go downhill and become life-threatening for Reign. As always, I’ll be bringing you all along for the journey. Pray with us that our transition into the new normal is kind and uneventful for Reign.
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