36th Annual Jeffrey G. Hoeh Memorial Golf Scramble Recipients – 2025
Lily C. – In November 2022, Lily was diagnosed with severe Pulmonary Hypertension (PH) at just seven years old. She was immediately started on three medications and had a hole placed in her heart to help relieve the pressure in her heart and lungs. One of these medications requires continuous infusion through her arm, which only lasts 2-8 weeks. Each time a new site is needed, it is a very painful process for her. This has significantly impacted her daily activities like bathing and getting dressed but also her favorite activities like cheerleading and going to Kings Island as she tires quickly. Later, we discovered that Lily was born with the RASA 1 gene, making her the only known person in the world with both this gene and PH. This has made her a unique case for her cardiologists and pulmonologists.In January 2024, Lily contracted the flu and spent 36 days in the ICU. Her recovery was challenging, and her heart and lungs deteriorated further. An MRI revealed over 50 Arteriovenous Malformations (AVMs) in her lungs, a condition she did not have before January 2023. Consequently, she was listed for a lung transplant in March 2024. Now nine years old, Lily must wear oxygen all the time while waiting for new lungs. Despite her condition, she remains the strongest little girl you will ever meet. She has matured quickly due to her experiences but has always had a heart of gold and an old soul. We have been through a lot lately. I’m a single mom raising two special kids—Lily with PH and my son, who has autism. It’s been hard working full-time as an ICU nurse at Cincinnati Children’s, taking her to all her appointments, and getting help for my son. We live paycheck to paycheck, and our bills keep rising. Our Duke Energy bill alone is almost $400 a month as we have to refill her tanks daily, and her medication co-payments are piling up. It’s very hard trying to pay bills, keep our lives together, and be present for my kids. My 76-year-old mother moved from Florida to help me. She’s renting out her place while staying with me and has been my rock during all this. I wouldn’t have been able to do this without her. She is Lily’s co-lister, as you need two people to care for her before she can be evaluated for a transplant. She had to meet with nine teams and get trained. I have also been very fortunate to have my work friends, high school buddies, close friends, and family help us out. It truly takes a village. When Lily receives her new lungs, she will face a challenging recovery period. She will be hospitalized for 2-4 months and then home-schooled for a year, unable to leave the house for an entire year. Despite these limitations, we have been striving to make every moment special for her. For her Make-A-Wish in May, we had to adjust our plans from a Disney trip to a shopping spree due to her transplant listing restrictions. Post-transplant, Lily’s quality of life will change significantly because of the immunosuppressant medications she will need to take. This means she won’t be able to enjoy some of her favorite activities, such as being around horses, eating sushi, swimming in lakes, or cheerleading for her school. However, in true Lily fashion, she will adapt and continue to live life to the fullest, finding new ways to enjoy her passions and stay positive.
Wyatt T. – Wyatt was diagnosed with a cancerous brain tumor on July 21, 2023 when he was just 4 years old! He endured 42 days in the hospital, multiple brain surgeries including a craniotomy on July 26th which lasted 9+ hours, as well as spending weeks connected to an EVD drain that eventually led to surgery for a brain shunt which he will have for life. This was followed by 6 weeks of Proton beam radiation. His official diagnosis is a grade 3 Posterior Fossa Ependymoma (PFA). This is the worst type of Ependymoma as it has the highest chance of re-occurrence, and the concern is heightened as Wyatt’s family learned the surgeons were unable to get the whole tumor out. Most families have a pretty likely chance of their children living a long & healthy life. For Wyatt, statistically that is a scarier reality should his cancer recur as most Ependymomas come back more aggressive and are chemo resistant. At this time, the only treatment that can be effective with recurrence is another brain surgery to remove all the visible tumor and more radiation all of which sadly, come with side-effects. His shunt also needs to be maintained for a lifetime and can malfunction and require the need for future surgeries. While the future is uncertain, Wyatt’s family has witnessed their brave warrior fight & battle hard to overcome a condition known as Posterior Fossa Syndrome. He had to relearn to walk & talk all over again at 4 years old! He had countless Physical Therapy sessions & succeeded in gaining most skills back. He is currently dealing with optic nerve damage to his eyes, but a plan is in place to deal with that as well as MRI’s of his brain & spine every 3-4 months to watch for reoccurrences. In addition, he follows up with oncology, radiation oncology and ophthalmology on a regular basis. Wyatt may also need treatment or therapy for radiation side effects that often take years to surface. Thankfully, his most recent scan this February was STABLE!!! A cancer diagnosis in your family is heartbreaking & terrifying but when it is your child it is incomprehensible! Wyatt’s parents fear the future & the tough choices they will have to make if his cancer returns. One parent will likely need to stop working as many kids who relapse travel to other states for clinical trials & other neurosurgery consultations as some tumors are in places many will not operate. Currently Mom carries health insurance for the family so if she stops working, they will pay the full premium while not getting a paycheck or risk losing their insurance for the family. All of this is worrisome, however Wyatt’s parents also wish to provide enriching experiences for him as appropriate as they know the reality is, he may not have a lifetime to do them. For now, even though they have had to change the way they think & live, they maintain hope for their child with prayer and the power of God and their amazing community on their side.
RJ A. – When RJ was 15, he started with headaches in November/December of 2019. He had just started lifting weights at school as he was trying out for the Freshman Baseball team. We thought the headaches were because weightlifting was a new thing for him and he had to get used to doing it. But when he woke up in the middle of the night with the headaches and we were getting calls from school saying he couldn’t concentrate, we knew something was wrong. RJ never complained about being sick or being in pain. We had taken him to the ER 3 times in a week with no results. Finally, we went to our family Dr. who ordered an MRI for RJ. The test was on 1/23/2020 and what this revealed was a huge mass in RJ’s brain! The next few weeks were very emotional and trying for us. We were given so much information and had to move fast. They had done a biopsy, and he was diagnosed with non-germinomatous germ cell tumors (NGGCT) and Cancer. RJ was treated initially with a chemotherapy regimen, but his tumor unfortunately continued to grow after 2 cycles. RJ underwent surgery on 4/23/20 with the goal of removing as much of the growing tumor as possible. This 18-hour surgery was quite complex, and RJ’s post-operative course was complicated by a very prolonged recovery and significant new neurologic deficits. The tumor left him unable to see and use his eyes normally as it pressed on the optic nerve for so long. RJ has undergone eye surgeries, and an eye lid lifts on both eyes, but his vision is still blurry. It has also impacted his nervous system which has left him with shaking of his arms/hands. RJ completed several weeks in an inpatient rehab facility. He made small, slow improvements at first, but his progress eventually plateaued for many months. Over time, RJ made remarkable progress with significant improvement in mental status, strength, gross & fine motor skills, and swallowing (taking all nutrition by mouth rather than by tube) with regular PT/OT & speech services. To treat RJ’s remaining growing tumor, he went through 15 rounds of Proton Therapy and 5 rounds of stereotactic radiosurgery radiation treatments in June & July 20’. After the radiation, the team noticed another growth. It was in the right side of the brain. The tumor was pressing on the receptors for the left side of the body which in turn will mimic a stroke patient and left him unable to use his left side normally. He lost some feeling and the ability to grab and hold on with his left hand. He was unable to laugh or cry because of the tumor and location. In February of 2022 we were told that there was nothing else they could do for RJ and this tumor would eventually take him from us. So we started looking for second opinions. I had stayed in contact with the fellow oncologist that RJ had at Cincinnati Children’s, who left and went to Nationwide Children’s in Columbus as the Oncologist. We had a few appts with them and subsequently tried another chemotherapy medication. Finally, on February 25, 2023 RJ underwent another brain tumor resection surgery. It was slotted to be 12 hours, but the surgeon had it done in 6. He removed all the tumor and the residual that was left from the first resection. He was once again left with more neuro-cognitive deficits. He is unable to do most daily tasks by himself. He needs assistance with everything which to this day he gets between an aide who helps care for him and from his Mom who also works full-time. He has completed many sessions of OT and PT and aquatics. These therapies are coming to an end as they do not have anything new to help him improve. He attends a day program 2 days a week that he loves. He has a maintenance MRI every 6 months and every 3 months sees the Oncology team for follow-ups. RJ frequently tells us that this tumor is not fair. He had plans. He knew what he wanted to do in school and wanted to play baseball. He had just made the freshman team and a new select baseball team then he was diagnosed with this tumor. His whole life stopped, just like that!! He tries to keep his sense of humor but has been very difficult for him lately. He is very strong-willed, and wants to walk again. He will challenge anyone to a chess match and Connect 4!
Brandin S – In November 2024, after months of undiagnosed shoulder pain, 34-year-old Brandin received the diagnosis of Thymoma, a rare form of cancer of the thymus, following a biopsy on November 20th. He then had unexpected complications which led to Brandin spending a week in the cardiovascular ICU. His tumor was the size of a grapefruit and sat at the top of his heart and against his aorta. He is currently recovering from a four-hour thoracic surgery performed on January 6th to remove the tumor from his chest where they had to open both his right and left pleural spaces. He has been unable to work since November. He will have to undergo a second surgery to repair his diaphragm in 6 months to a year. Due to the size of Brandin’s tumor, his surgeon had to sacrifice his phrenic nerve on his right side which impedes him from being able to breathe normally until his diaphragm repair. He is not allowed to even begin to lift anything until March at the earliest. Brandin is married to his wife Melanie and has 3 young children ages 5, 9 and 12. He is also a veteran who was deployed from 2011-2012. Brandin & Melanie have done their absolute best to keep life as normal as possible for their kids whether that is quietly cutting back on small things in life, or Melanie picking up extra shifts at the hospital as a Nurse to ensure that they make ends meet. This support would allow Brandin & Melanie the ability to prioritize his healing and give them some peace of mind instead of worrying about their financial struggles of becoming a one income home of five so quickly and unexpectedly.
More specific information about the memorial fund, sponsorships or this year’s golf outing is available on our website or upon request.
We are a nonprofit public charity with 501 (c) (3) tax exempt status.
Julie Caddell – 5809 Gold Dust Dr. Cincinnati, OH 45247 – 513.218.3678
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