Benedict Pro Schiefelbein

Be still and know that I am God.  Psalm 46

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New Update 6/26/24 

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THE STORY - A BLESSING IN DISGUISE

On Saturday, February 24th, our three-year-old son Benedict (Benny) was accidentally hit in the back of the head with a golf club by his brother Ambrose.  Benny is the fifth of our seven children and is accustomed to many bumps and bruises. We took Benny to the ER expecting a short visit to get a CT scan.

The doctors confirmed what we had expected: Benny had a minor concussion.

Then they revealed the shocking news that changed our lives forever.   

Benny had a brain tumor. It was in his left temporal lobe that had been hemorrhaging for a while. The only reason this tumor was found before any symptoms appeared was because of the golf club incident. We couldn't believe how blessed we were to have found it.  

Within 48 hours of the initial accident, our son was undergoing brain surgery, and the tumor was removed. The doctor didn't see anything during the surgery to make him think this was a malignant tumor. We returned home that Wednesday with a relatively easy recovery and a crazy story. 

We knew the pathology would take one to two weeks, so we patiently waited and didn't think too much about it.  At the start of week three, we were told that the lab had to send the sample to another testing site because they had never seen anything like this before. Unfortunately, that trend continued as each subsequent lab determined that this tumor was unlike anything they had ever studied and didn't match anything in their databases. The sample then moved on to a series of molecular studies, and some of the tumor's characteristics became better known. 

On April 10th, we were informed that Benny has a rare and aggressive cancer that will require proton radiation therapy. We were shocked, to say the least, but still grateful that the initial tumor was discovered so early; thanks be to God.   

On April 17th, we met with Benny's new oncologist to discuss his upcoming treatment plan. Benny will receive a few more tests, including an MRI of his head and spine and a lumbar puncture, while we await the final results of the latest molecular study. He will also have a prep screen for his treatments so they can map out the plan for each day of his proton radiation therapy, and they will insert a PICC line as well.

Then, treatment begins.

THE TREATMENT 

Benny will receive his proton radiation therapy five days a week, Monday through Friday. This process will take approximately six and a half weeks, beginning sometime in May, and will require Benny to be sedated for each treatment.  It will take several hours each morning, and Amanda will be with Benny for each one. 

HOW CAN YOU HELP 

Thanks to our extended family and close friends, we have most of the basic logistics covered to take the older kids to school, care for the younger two at home, transport Ambrose to his weekly allergy shots, and still allow Jeff to work a somewhat regular week while Benny is in his daily treatments. On the other hand, we know we need assistance with meals, transportation to extracurricular activities, play dates, and, most importantly, prayers. 

The family is also accepting financial support, details can be found at GiveSendGo

We thank you in advance for your support and prayers. We are grateful, hopeful, and faithful but also sad and overwhelmed. We know that any suffering we endure is part of God's perfect design for our lives.  We put our trust in the Lord and praise His holy name. 

Update 4/29/24

Last week was a rollercoaster of news, tests, and emotions. On Monday, we learned that the molecular study had finally concluded after two months, and the results confirmed everything we had been hearing along the way. This cancer is completely unique and very bad.  We had to face the reality that no part of the next year would be easy on Benny or our family. 

But we did learn some good news to mix in with all the rest. 

THE GOOD STUFF

  • Benny had a 3-hour MRI on Wednesday to search for any visible tumors in his brain and along his spine. We were so grateful to learn that the scans were clean and there is no visible sign of the cancer right now. 
  • We were also able to schedule an incredible Benny Pro celebration day on Monday, April 29th. This event will include a visit to Holbrook Construction to check out the large dirt moving trucks and equipment, followed by an afternoon with the City of Coppell Police and Fire Departments. The grandparents and close support team members are joining us and our kids for an amazing day together. 

NEW STRUGGLES AND CHALLENGES 

  • It became clear that Benny will need chemo after he completes his proton radiation later this summer. This means that we will get a short break in between treatments during which we hope to keep our Colorado family vacation and take the entire family to the National Eucharistic Congress in July. The realization that Benny's cancer is so rare and aggressive led us to accept this additional treatment, and currently, the plan includes 4-months of chemo, during which he will be hospitalized at the start of each month for a few days and then make frequent visits back and forth for the remainder of each month before doing it all over again.
  • This caused us to withdraw Benny from starting at The Highlands School with his four older siblings in the fall. We are also bolstering the home support team, as we know that Amanda will not only be by Benny's side for every sedated proton treatment but will also join him for every hospital stay during chemo, allowing Jeff to continue working. 
  • Benny received a lumbar puncture on Friday (more on that below) and had a PICC line inserted while he was sedated. Keeping the PICC line clean is a critical part of our journey, and that means that Benny cannot enjoy swimming, splash pads, water hoses, or even a submerged bath for many months ahead. We are thinking of creative ways to give our other kids swimming time without making Benny feel left out. We will likely swim while he is sedated during his morning treatments, send the kids to offsite pools even though we just got a pool with the new house, and rely on friends for fun times in the Texas heat. 

THE LUMBAR PUNCTURE 

We should receive the results of Benny's lumbar puncture on April 29th or 30th, and this is one of the final critical path moments of our pre-treatment testing. If his spinal fluid is free from cancer cells, our treatment will move forward as planned - 6.5 weeks of proton radiation, one month off, and then 4 months of chemo.  If the spinal fluid is found to have cancer cells included, the entire plan will shift, and we will immediately move into full-blown radiation and aggressive chemo at the same time. We are praying nonstop as we anxiously await these results and will post an update when we know more. 

HOW CAN YOU HELP 

Friends, family, and strangers have asked how they can help, and up until now, we have focused on prayers and meals. We will leave the meal train posted for those who are local, and we will extend the calendar further once we have a better idea of our chemo schedule. 

But we have also realized that this is becoming much more difficult to navigate, and the costs are adding up. For that reason, we have also launched a page for financial support and shared prayers. For more details, check out Benny's GiveSendGo

And we ask all people of faith to keep Benny and our family in your prayers.  We put our trust in the Lord and praise His holy name. 

Update 5/1/24

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.

 HOW CAN YOU HELP US

I tried to avoid any call for donations but realized that we are facing many unforeseen expenses related to childcare, entertainment for the kids, medical costs, and more. I also know that people want to help, but there are only so many days on a meal calendar, which only works for people in the surrounding area.

 Therefore, we launched a page for financial support and shared prayers through GiveSendGo.  Please share this link; we value prayers above everything. Thank you in advance.

 GiveSendGo for Benny Pro

 God bless you all.

Update 5/9/24

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 above 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.

  1. 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.
  2. 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.
  3. 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.
  4. If you feel called to send financial support, we have a page for Benny through GiveSendGo.  GiveSendGo for Benny Pro 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.

Update 5/16/24

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.

Benny woke from his sedation in great spirits on his first two visits, but Wednesday was a little rougher. The good news is that once he is completely lucid, his energy and lively spirit also return. By early afternoon, Benny can be found playing outside with his siblings and giving great hugs to the family and team surrounding us.

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

Update 5/23/24

For this update, Amanda and I would like to start by sharing how much we appreciate your love, support, meals, care packages for the kids, and most of all, your prayers. When anyone asks how we are doing these days, we can honestly say that we are doing well considering the situation. Indeed, the way in which our friends, family, community, and strangers have stepped up for our family during this time is a major factor in our overall momentum right now.

Benny has completed eight proton radiation treatments, with two more to go this week. He has a different start time each morning, with some mornings on the early side, around 8:00 a.m., and others closer to lunchtime. Each morning, we do our best to keep him asleep as long as possible, and then when he is awake, we hide the other kids’ breakfasts since Benny is not able to eat or drink prior to his sedation.

Amanda continues to impress me with her loving patience and faith as she takes him to the proton clinic each morning and spends time in prayer while he is undergoing the actual treatments. Meanwhile, the other kids continue to live life to the fullest, which means crazy fun times, bumps and bruises, homework, grumpy mornings, a sprained wrist, and just this week, two kids coming down with double ear infections—the baby and the toddler. There is very little downtime in our days, but Amanda has been joyful even when it is difficult. We are blessed with full-time help from family and friends, who are also on this rollercoaster of emotions and occasional exhaustion.

This week we also released the BENNY PRO store, a super cool fundraiser put together by Scott Williams from Sock Religious. You can get your own t-shirt with the custom BENNY PRO logo that features his favorite things - police cars, fire trucks, balance bikes, excavators, bouncy balls, puzzle pieces, and most importantly, his football cleats that he wears nonstop. 

Until then, I wanted to share this collection of pictures highlighting our new reality. Benny is sedated each morning for his treatments, but he is back to being a 100% little boy on a fun-loving mission with his siblings every afternoon. We give thanks to God for both and praise His holy name.

Update 6/11/24

Thanks again to everyone for your support as we continue to endure this journey and care for little Benny Pro. I cannot tell you how much you have blessed our lives with meals, gift cards, activities, transportation for kids, house cleaning, playdates, and, most importantly, prayers.

Today we share general updates and some very uplifting news.

This morning, Benny will complete proton radiation treatment number 21 of 33. His start time changes every day, and we do our best to keep him asleep in bed until it's time to go so that he doesn’t fuss about not eating or drinking each morning before sedation. That entire process has gone much better than I would have predicted, partly because Benny loves going to his treatments and spending time with his mama. The staff at the Texas Proton Center also know how to speak with a 3-year-old and make him feel special in the process.

There have been major ups and downs since our last update, too. Without going into detail, I will just say that we ran into some major roadblocks that were solved within days by the amazing people God has placed in our lives. It has been an intense rollercoaster, and we have felt the wear and tear of emotional, mental, and physical exhaustion. But thanks be to God, our situation has only brought us closer to God as we seek to not just accept His will but to Love God’s will.

The Exciting News

After 100 days of testing, we finally received the results of the MCI molecular study that was performed on Benny’s tumor. His official diagnosis is Supratentorial ependymoma, SFTA fusion-positive. This type of tumor is extremely rare and there are few, if any, documented cases that match his cancer exactly.

Yesterday we spent time with Benny’s primary oncologist at Cook Children’s Hospital in Fort Worth and learned a lot more about this type of cancer. The big takeaway is that we went from classifying his tumor as embryonal to now ependymoma.

Ependymoma tumors tend to reoccur in the brain rather than in the spine or spinal fluid. Ependymoma tumors also do not respond to chemo, which means….

Benny is officially not going to do any chemo!

The protocol to treat ependymoma is resection followed by radiation. We have already completed a total resection, and we are on the last third of his radiation treatments.

While we don’t know exactly how Benny’s tumor will behave, all we can do is watch closely and use the tools in our tool belt (surgery and radiation) appropriately. When Benny finishes his last session of proton radiation, he will be scheduled to have his PICC line removed!

This means that Benny will get to enjoy the second half of summer without being immunocompromised in any way. Swimming pools and splash pads beware, here comes Benny Pro.

He will have a follow-up sedated MRI & Lumbar puncture on Aug 7. Assuming all goes well, he will continue to have MRIs every 3 months for the first year, every 4 months for the second year, every 6 months until year 5, and then once a year after that.

One downside to ependymomas is that they can reoccur many years after the first instance. This means that Benny will be on watch likely for the rest of his life. But we also see that as a blessing because we will always know what’s going on in his brain… and his older brother Ambrose can retire those golf clubs.

If the tumor does reoccur, we’ll have to determine if it is operable and if we can use radiation again (depending on where the new tumor is located).

We are celebrating this moment because Benny gets to avoid chemo and we have an actual plan in place! We feel a sense of relief and freedom to dream about fun family activities and a more “normal” daily plan for raising these seven amazing kids.

Benny’s Final Proton Treatment

If all goes according to plan, Benny’s final proton treatment will occur in the morning on Thursday, June 27. We plan to invite friends, family, and neighbors to join us in a Benny Pro send-off celebration as he and Amanda leave the house that morning one last time. Message me if you’d like to join us that morning; we welcome anyone who wants to come together in a prayer of thanksgiving and then cheer for Benny as he waves goodbye.

Benny Pro will be on this journey for the rest of his life, and I pray that his story far outlasts my own.

"Beloved, do not be surprised that a trial by fire is occurring among you, as if something strange were happening to you. But rejoice to the extent that you share in the sufferings of Christ, so that when his glory is revealed you may also rejoice exultantly." 1 Peter 4:12-13

Update 6/26/24

TIME TO CELEBRATE

After an exhausting two months, Benny will complete his final proton radiation treatment on Thursday, June 27th, 2024. Thanks be to God.

Thank you to everyone who has helped to keep my family strong with your prayers, letters, meals, rides, calls, texts, donations, Benny Pro shirts, play dates, house duty, babysitting, sacrifices, fasting, mass intentions, and so much more.

WHAT’S NEXT

Benny will also have his PICC line removed after his final treatment. He is currently considered to be without signs of brain cancer and will begin check-ups that include sedated MRIs and lumbar punctures throughout the months and years ahead.  We ask for your continued prayers for Benny’s health.

As for our family, we plan to take a deep breath and enjoy the normal chaos of large family life without the daily treatments and the surprise hospital trips for PICC line maintenance.

FAITH OVER FEAR

We are grateful for every step of this process, including the toughest moments of sadness and stress. We see God’s divine providence in everything we have experienced and choose to love His will.

NO WORDS

There is nothing I can say that will ever express our gratitude for the people who have supported us, including those we will never know.  I pray for each of you daily.

HELP FOR THE SCHIEFELBEIN FAMILY 

FINANCIAL SUPPORT

Details available at GiveSendGo

 

PRAYER

The Schiefelbein family has witnessed the miraculous healing power of prayer in their own family and now they humbly request your prayers for healing, courage, wisdom, and peace. 

 

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