This week marks the start of Benny’s proton radiation treatments.

Every Monday through Friday, Amanda takes Benny to the Texas Proton Center nearby, where he is sedated before receiving a 20–30-minute radiation treatment, and then he is given ample time to wake up and enjoy a snack before heading home. So far, Benny has looked forward to his morning routine because the staff at the proton center are so incredible with him and with my wife. They speak with him on his level, and according to Benny, he gets to play with the coolest cars during each visit. It wasn't until today, day 5, that Benny was sad as they prepped him for his treatments. 

The great news is that each afternoon, Benny can be found playing outside with his siblings and giving great hugs to the family and team around him. We have noticed that he has more energy than normal well past bedtime (perhaps related to the sedation), and that makes the end of the day more challenging. 

We are so grateful to be in this phase of the journey. Having a plan and following a routine helps us all feel a sense of normalcy. In the two weeks prior, I could feel the wheels coming off. We were exhausted from little sleep (remember the 6 other kids, including a toddler and an infant), and we were on a rollercoaster of major medical updates coming our way almost daily. Now, we have overnight team members to help with the baby for most of the week, a host of families helping to shuttle our kids to playdates and soccer practice, and we are blessed by the many meals from friends and strangers alike.

There are still daily struggles regarding PICC line maintenance, coordinating care between different hospital systems, creating a new summer schedule after canceling our primary plans, finding creative ways to keep Benny entertained without swimming or splash pads, and connecting with my wife as we both juggle so many competing priorities.

As always, Amanda and I cannot thank you enough for your love, support, and prayers. We know this will be a marathon, not a sprint, but thanks to all of you, we are certain we can provide the care that Benny needs. 

First and foremost, Amanda and I would like to offer our gratitude and prayers to all who have supported our family during this difficult time. We wish we could properly thank everyone who has reached out with prayers, cards, meals, gift cards, donations, toys, playdates, prayer shawls, prayer cards, relics, mass intentions, perpetual prayer enrollments, hospital connections, and more. We also know that for every person we have interacted with directly, there are many more who are privately supporting our family by sharing our story with others or praying daily for Benny’s healing and our peace of mind. For those we know and those we have yet to meet, we pray for you daily.

While we experienced our second miracle last week (see update from 5/1/24), we still face the reality that our son has brain cancer that must be treated. On Monday, the 13th, he will begin receiving proton radiation treatment. This process will take place every Monday through Friday for a total of 33 treatments. The doctors told us to prepare for 2 full months of back and forth to account for days that might get missed if Benny is sick or other issues arise. This means we will be in a daily grind where Amanda takes Benny each morning for his sedation, proton radiation, and recovery before he gets the chance to eat a meal and hopefully get the chance to enjoy the afternoons until roughly the 4th of July. We are very excited for Independence Day this year.

After that, Benny will get a 4-6 week break before starting a 4-month regimen of chemo. We will wait to share more details on those treatments until we get closer to that time.

THE GOOD STUFF – Blessings Abound

There are not many proton therapy centers in the US, and we are blessed that one of the two in Texas is just 15 minutes from our house.

We have built an incredible home team over the years, and we are receiving tremendous support from our parents and the mother’s helpers who have become a part of our family over the years.

We were able to bring our entire family, including Benny, to celebrate Emilia’s First Holy Communion on Saturday. At one point, he was scheduled for aggressive chemo and would have been in the hospital during this special celebration, but thanks to the miracle in his spinal fluid, the entire family celebrated this sacrament together.

THE TOUGH STUFF – A New Normal

PICC line maintenance – each day, Benny’s PICC line must be cleaned and flushed at home. It is not a difficult procedure, but it is a critical step in keeping him free from infection. Yesterday, we realized that one of his two lines was missing the protective cap on the end, exposing the line to potential contaminants. After a call to the after-hours doctor, I drove Benny to the hospital so that a nurse in the Oncology department could examine the line, perform a more thorough cleaning, and put a new cap in place. The entire visit was only 10 minutes, but the ordeal consumed a good portion of the evening and upset the other kids as they watched their dad take Benny away with little notice.

We have six other kids that still need mom and dad. There was a night this week when one daughter was upset and needed extra nighttime cuddles, followed by Benny having an hour-long nightmare while Ambrose was coughing so much that he asked for a breathing treatment at midnight. Avelynn cried out later from her room as she was also wheezing and needing a breathing treatment… oh yeah, the 3-month-old baby also woke up twice that night needing to be fed. Combined, I bet that Amanda and I slept for less than 3 hours that night. To say that this is already exhausting as we prepare for the treatments to begin is an understatement. Thankfully, Amanda’s mom changed her plans and came to stay with us a few days earlier than originally planned, as we needed the extra full-time support.

HOW CAN YOU HELP US

There are several ways you can join us and be in solidarity with Benny during this journey.

Continue to pray. Pray for Benny, his healing, and his courage. Pray for us, for our kids, for our patience, and for our spiritual growth during this time. Pray for the doctors and medical staff, for their wisdom and their spiritual growth.

Share Benny’s story. I believe that part of God’s plan must be to use Benny and his story to bring others closer to God and closer to heaven.

Join us for a 33-day devotional that Amanda and I will be doing every Monday through Friday starting on the 13th. We selected “33 Days to Merciful Love: A Do-It-Yourself Retreat in Preparation for the Consecration to Divine Mercy.” The book is available online and in stores. The author is Michael E. Gaitley, MIC.

If you feel called to send financial support, you can do so on this page.  We are using these funds to offset various costs related to childcare, medical expenses, experiences for our children, and fixes to make the house better suited for our situation (modifying the fence around the pool for example). GiveSendGo is an incredible group that assigns prayer partners to reach out to families like ours when using their platform; I highly recommend them for your own fundraising needs.

Thank you again. God’s peace be with you.

It isn't easy to write this update because of the gravity and impact of all that has transpired in the past few days.

Monday’s Benny Pro Celebration Day was a huge success. Benny and his siblings lived out every little kid’s dream by driving construction equipment, climbing in police vehicles, riding in a fire truck, and spraying the fire hose. Benny was even sworn in as the Police Chief for the City of Coppell for the day. You can catch the story from the local CBS news affiliate here.

Unfortunately, Monday also came with some sobering news regarding Benny’s lumbar puncture from Friday. Multiple doctors confirmed that they found “clusters of cancer cells in his spinal fluid” and that our entire treatment plan needed to change. Rather than facing the less invasive proton radiation for the next seven weeks, we were immediately scheduled to begin aggressive chemo starting Thursday, May 2nd.

This meant Benny would be admitted to the hospital for a week and Amanda would be by his side the entire time. Remember, we have six other children at home, including a 3-month-old baby… the news was overwhelming, and the changes were happening quickly.

A heavy weight descended upon us that night at dinner as our parents and support team processed the news. Monday was one of the best days of our lives and one of the most difficult at the same time.

With the complete change in treatment plans underway, the original oncologist ordered one more lumbar puncture just to be triple-sure that we were on the right path. That meant that Benny was again sedated on Tuesday for yet another test.

At the same time, Amanda and I never let up on our prayers. On Sunday morning, we spent time in private healing prayer with a close friend from the Fathers of Mercy, Fr. Ken Geraci. He took time to pray over Benny and then over each of us, including three of our other kids and two of our primary support team members, Catherine and Chad. This prayer happened between the first and second lumbar punctures.

Simultaneously, countless people worldwide covered us in prayers, made sacrifices, and offered masses. Many were also completing the nine-day prayer novena to seek the intercessory prayers of St. Peregrine, patron saint of cancer patients. That novena prayer journey ended on Tuesday, and today, May 1st, is the feast day on which we honor St. Peregrine.

I came home from work yesterday, unable to focus on the needs of my job that day, and began working alongside Amanda to find an additional vehicle for our family and a night nurse to help me get through the upcoming sleepless nights with emotional kids and our infant child.

Then the doctor called, and Amanda’s face went white. I couldn’t imagine what else could go wrong, and when she put the phone on speaker, I heard him say, “I don’t know how to explain what happened. Your pediatrician calls to check on Benny daily, and today I told him, ‘Dr. Dennison, you keep praying for a miracle, and, well, you got one.’ There is no sign of cancer cells in the sample we took on Tuesday.” He went on to explain that multiple oncologists from two competing hospital systems had reviewed the findings, including sample sizes and test results, and all concurred that the cancer cells visible on Friday were gone entirely from Benny’s spinal fluid.

This is our second miracle during Benny’s cancer journey. The first came when Ambrose hit Benny with the golf club, and now the miraculous change in his spinal fluid makes two.

They canceled our upcoming hospitalization for the aggressive chemo and reinstated the first plan to begin the daily sedations and proton radiation treatment as a result of this miracle.

Benny is headed to the proton therapy center today, May 1st, to be sedated and scanned for the brain mapping process they use to create a detailed plan for his upcoming treatments. He will undergo 33 treatments in all, and they will begin on Monday, May 13th.

THE GOOD STUFF

Thanks to the incidental finding of the original tumor, we still feel like we are playing with a lead and not scrambling to catch up. This second miracle needs to be shared; there is no explanation outside of God’s healing hand and the intercessory power of prayer from the faithful. Thank you for praying with us. Please continue to pray without ceasing.

The aggressive chemo was very likely to have significant impacts on Benny’s short-term and long-term abilities. We are now back in a treatment plan that gives him a better shot at a more normal life down the road.

THE TOUGH STUFF

The miracle we experienced yesterday doesn’t take away the need for treatments. Benny still has brain cancer, and the worst move we could make at this point is to undertreat his condition. We have a long road ahead and are certain there will be more difficult days on this rollercoaster.

33 proton treatments will take roughly eight weeks to administer, so we are canceling our Estes Park vacation this year. The kids do not know yet because we have waited until the dust settled to determine the next steps. We are trying to find creative ways to give our kids a great summer while also being present to Benny’s needs.

Benny is unpredictable after sedation. Yesterday, he remained in a somewhat conscious haze after his procedure and raged as Amanda tried to exit the hospital, even biting her at one point. I am sure this is traumatizing to Amanda, and she talked about the people who followed her out of the hospital to make sure she wasn’t kidnapping this child. As if just being sad isn’t hard enough, she also has to wrestle with a kid who currently has a PICC line coming out of his chest.

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Please continue to pray for our family. We know that prayer works and we cannot thank you enough. 

God bless you all.