We all have challenges and opportunities, this journey has opened my eyes to the incredible strength and resilience that not just Logan, but so many children and families show every day. Their stories deserve to be heard, and that’s why it’s so vital for platforms like this blog and organizations like the Logan Strong Foundation to exist.
Just a quick recap of my last blog post as this is a direct follow-up to that one.
On our family’s February visit to Atlanta, we had the privilege of meeting one of the doctors responsible for Logan’s treatment plan at Children’s Healthcare of Atlanta (CHOA). Our conversation revolved around Logan’s post-cancer challenges, especially his reliance on a feeding tube for nutrition. We learned that Logan’s reluctance to eat wasn’t just from the aftermath of his brain surgeries or chemo-induced nausea. A big part of the reason is that typically, the crucial developmental stages for learning to eat occur in the first two years of life. Sadly, Logan never got that window of opportunity. Presently, Logan’s oral intake is limited to Veggie Straws and small amounts of water or apple juice by spoon. However, our time at CHOA brought us a ray of hope when we learned about the Multidisciplinary Feeding Program they offer. This is a 10-week program (I initially thought it was 8 weeks), specially designed for those like Logan who are post-chemo and overcome their aversion to food. With its remarkable 90% success rate, this could be the key to Logan eating by mouth. But there’s a catch – to attend, we would need to relocate to Atlanta for 3 months, a massive logistical and financial challenge.
This is exactly why I participated in the Super Mom competition, as winning the $20,000 would be a lifesaver, making it feasible for us to give Logan this chance. This would have allowed us to focus on Logan and not have to worry about our monthly financial obligations.
So, let’s delve into the details of the Super Mom competition, its results, and the insights I gained from it…
First and foremost, a heartfelt thank you to everyone. I am incredibly moved and humbled by the overwhelming support I’ve received over the course of the recent Super Mom competition. The funds raised during this contest will undoubtedly go a long way in supporting many families and causes, and for that, I am genuinely grateful.
However, I’d like to share a little reflection. The idea of this competition was fundraising. Though the title suggests a ‘Super Mom’ crown, the metric for victory was money raised, not necessarily the day-to-day challenges, sacrifices, and unconditional love that characterize motherhood.
Now, don’t get me wrong – fundraising is an admirable endeavor, and I am genuinely in awe of all the participants who poured their heart and soul into generating resources. Every penny raised is a testament to the dedication of the contestants and their supporters.
That said, if the competition were solely based on the supermom metric, gauging the sleepless nights, the patience, the juggling between work and home, the unconditional love and care, and the endless list of things that mothers around the world do daily – I believe I would have had a strong shot at the title. It’s not about boasting, but more about acknowledging the tireless efforts we, as mothers, especially special needs moms, put in every day.
To every mom out there, whether you were a part of this contest or not, know that you are a supermom in your own right. Each one of us possesses a unique strength and resilience that makes us superheroes in our children’s eyes.
Lastly, a massive thank you to everyone who believed in me voted for me, and supported me throughout this journey. Your faith, encouragement, and love mean more to me than words can express.
Remember, titles and competitions might come and go, but the essence of being a mother – that supermom spirit – lives on forever within us.
Now, let’s circle back to our Atlanta opportunity….
In early May, we had a consultation with Dr. William Sharp, who heads the Feeding Program at the Marcus Autism Center at CHOA. Upon understanding Logan’s background and experiences, Dr. Sharp concluded that the program would be ideal for him. During this consultation, we were debriefed on the program structure, its duration, and the necessity for us to move to Atlanta for Logan to attend.
Without hesitation, I requested the program’s application and reached out to Logan’s insurance for authorization. If you’ve ever dealt with insurance, you know it’s a bit of a maze and needs patience. With the feeding program already booked until September (as of May), my husband and I chatted about when it would be best for us. December seemed good because it meant Logan wouldn’t miss as much school. Waiting till next Summer? That felt like a lifetime away! Logan’s been in speech and feeding therapy since he was six months old, and honestly, we’ve been waiting long enough. Our goal with this program is multi-faceted: eliminating the g-tube, improving his nutrition, and addressing the below-average height and weight issue attributed to his nutritional challenges, thyroid condition, and brain injury (on top of the after-effects of chemo). Just imagine him enjoying regular meals, not needing only a few people who know how to use his feeding tube. And the cherry on top? Feeling a bit more like a typical kid. We’re talking real normalcy here!!!!
A few weeks later (in June) I received a call from Logan’s insurance company saying “Good news, we have approved 10 visits!” While I appreciate the gesture, my request was for 50 visits. The program lasts for 10 weeks, with 5 days a week. That’s one visit daily for a total of 50 days, or 50 visits. It didn’t add up.
Obviously, I challenged their decision. The explanation offered was that they weren’t sure how Logan would accept the treatment or if it would even benefit him. To that, I firmly replied, “That’s not your decision to make. He needs to attend to find out.”
I continued, clearly taken back “We are uprooting our lives for three months, relocating to a different state, and you’re suggesting that if things aren’t working in just two weeks, we should just call it quits?” Her next question then took me by surprise, “That’s our other concern, where will you be staying during this period?” Keeping my composure (barely), I responded, “All due respect, that’s none of your business. We already have it figured out, as we have friends in Atlanta, my husband’s family in North Carolina, and we’ve already spoken with the Ronald McDonald House.”
They then broke it down for me, explaining that typically, Medicaid doesn’t typically approve out-of-state cases. However, after reviewing Logan’s extensive medical history, the doctors felt compelled to assist. (Note: Logan is on a Medicaid waiver from New York State due to his significant medical background, which includes a brain tumor, TBI, shunt, feeding tube, among others.) She was astonished herself at how quickly it was approved!
She reassured me, stating that if we saw positive results by the 8th day (given we had approval for 10 days), I should reach out to her, and she would expedite the approval for the rest of the program. I agreed and she explained to me the next step was for the insurance company and the hospital in Atlanta to come to a contract agreement and from there we would have a start date for the program. Again, planning on going in December 2023.
I was pretty proud of myself for being patient while waiting for the contract and start date, but by the end of August, or early September, more than 2 months later, I had not heard a word. I decided to reach out to CHOA, inquiring about Logan’s start date. When I was told there was silence in the communication between the two organizations, I was dumbfounded. It was suggested to me to reach out to Logan’s insurance company to find out what the status was. Funny how, when I called the insurance company, CHOA emailed me within an hour stating they had heard from them. Silently I wondered, “Why does it always have to be a struggle?”
By early September, the two entities resumed their contract discussions. With every ounce of patience I could muster, I continued to wait. With only three months left before we were set to leave three months, my anxiety was high anticipating all the arrangements to be made: my job, Logan’s schooling, therapies, prescriptions, doctor visits, finances, bills, and so much more. Given that I was to go alone initially, we also had to plan when Kevin could join us, perhaps for extended weekends or other opportunities. The amount of planning required was/is immense! Not to mention, I’m already an over-packer!
Rolling into early October, I still hadn’t heard anything, so I reached out to CHOA. They didn’t have an update. Then I reached out to Logan’s insurance company, no response. I reached out again, no response. I finally reached out to ‘C’ who has been Logan’s Case Manager there for years and she helped to reach out to get me a response.
On Friday morning, October 13th (of all days), I received a disheartening call. Logan’s insurance company informed me that the two institutions couldn’t find common ground regarding contract wording. The primary issue? If bills went unpaid, would the situation be governed by New York or Georgia law? To say I was livid would be putting it mildly. The idea that my child’s well-being was jeopardized because two lawyers couldn’t settle on contract terms was beyond comprehension. Both institutions had medically approved Logan, and yet this was the hurdle preventing him from attending? The mere thought of it infuriates me even as I write this. I was left with a whirlwind of questions: Had they even reviewed Logan’s file thoroughly? Was there any direct communication, or was this all just a string of impersonal emails? Did they explore relevant case studies? Was there an attempt to use a mediator, or did they consult other attorneys or medical experts? The entire situation seemed unfathomably senseless to me.
So, I went into action, calling anyone I could think of who could point me in the right direction or provide insight on such a matter.
Then the bomb dropped, and just a few hours later, CHOA called me and said the same thing, “We’re truly sorry, but we have to decline your son’s treatment.” Prior to that call, I had been in battle mode, laser-focused on seeking a solution and keeping my emotions in check. But the moment CHOA confirmed the denial, I crumbled. Tears streamed uncontrollably as I managed to utter, “Please keep his file active, I’m determined to figure this out.” Tearing up as I type this now. CHOA agreed to keep his file open, as I did not want to lose his spot for December.
CHOA suggested a self-pay option that would run us $2,200 a day. Over 50 days, that’s $110,000. To put that in perspective, the $20,000 I was aiming for in the Super Mom contest was merely to cover our regular bills during our three-month stay in Atlanta. That amount wouldn’t even make a dent in the program’s total cost.
At different points, both entities had recommended alternative facilities offering comparable treatment. Before Logan’s insurance company approved CHOA, they had identified a program in New York City. However, that program had an overwhelming six-month wait just for an evaluation, followed by another 18 months before the actual treatment could start. Absolutely not! I wasn’t about to let another two years slip by without getting Logan the necessary treatment. Not to mention, we were oblivious to the existence of such a program until our earlier visit to CHOA this year. Shockingly, nobody in Logan’s medical circle – be it his medical team, therapists, school, or insurance – had ever broached the subject of this program. It was as if it was a secret from everyone.
Needless to say, I had to take off from work last Friday and subsequently this past Monday as well. The entire week has been a whirlwind, as I’ve been trying to uphold some sense of routine and stability for both myself and my family. I’ve been relentlessly making calls, conducting research, and exploring every conceivable option in search of a solution.
I then found out that the roadblock might not even be about the contract, but rather that CHOA doesn’t accept Logan’s insurance. I’m not sure what reason makes me angrier, the fact that attorneys couldn’t agree on contract language or CHOA not taking Logan’s insurance and not telling us back in May. Now, I need to pause for a moment. No matter how intense my frustration is, I’m determined to keep a level head, do my research, ask the right questions, and pull out all the stops to get Logan into CHOA by December. While I often stand by principles, right now it’s all about Logan’s well-being, and I don’t want to get lost in a blame game.
I’ve been in touch with Logan’s insurance company reps, and together, we’re exploring a range of options, including additional or alternate insurance options. The good news is, we can have primary insurance and still use Medicaid as secondary. We’re just trying to piece together how that would work, if CHOA would accept this insurance and if it would be covered.
I also sent a pleading email to Dr. Sharp at CHOA. Noting the several Aflac connections in that I work for Aflac, and am a policyholder, and most importantly Logan’s treatment plan was developed by CHOA. And let’s not forget it’s called The Aflac Cancer and Blood Disorders Center at CHOA. When you lay it all out like that, it just feels like a solid case. Logan is medically approved by both entities, insurance or contract negotiations should be the hold-up. And if all these ties aren’t grounds for a little flexibility on Logan’s treatment, I’m not sure what would be.
So, I am still researching, and talking with anyone who might lend a hand or offer a solution.
Dr. Sharp responded to me this past Friday (October 20) and we have a call scheduled for Tuesday morning this coming week. I’m keeping my fingers tightly crossed, hoping we can work this our and get Logan to Atlanta by December. If push comes to shove, January works too!
I started writing this blog post in September. Admittedly, I got sidetracked by the Logan Strong Foundation golf tournament and the inaugural Special Needs & Disabilities Expo. I was hoping to wrap up this post with a more uplifting conclusion.
Anyone who knows me knows that I don’t back down. There’s no way I’m letting Logan miss out on this program. Bet on it – we’ll be in Atlanta come December, or January at the latest.
This IS NOT OVER! I will NEVER stop fighting for my son!
To be continued……..