So do not fear, for I am with you; do not be dismayed, for I am your God.

I will strengthen you and help you; I will uphold you with my righteous right hand.”

— Isaiah 41:10

The last couple of weeks have brought both hardship and hope — a reminder that even in the midst of difficult moments, God is near and faithful.

We had been navigating uncertainty while waiting to speak with Dr. Burzynski and his medical team about the next steps in Braelyn’s care.

In the meantime, we met with a new neurosurgeon, as Braelyn’s previous surgeon — who had walked with us through much of her journey — recently relocated several states away. Our hope was to begin building a relationship with someone more local who could perform her cranioplasty when the time comes.

Unfortunately, the experience was deeply discouraging and, quite honestly, traumatizing. Rather than partnering with us in support of Braelyn’s ongoing care, this doctor dismissed her current treatment plan, strongly pushed standard-of-care chemo and radiation, and — most painfully — told Braelyn that she would die regardless, but that standard treatment might “improve her quality of life.” It was painful and dehumanizing, and a conversation no young woman or family should have to endure, and certainly not in that way.

In moments like these, we cling even tighter to God’s promises — that He is with us, that He will strengthen and help us, and that He is holding Braelyn in His righteous right hand. That truth is our anchor.

But even through tears, frustration, and heartache, we are not without hope.

This week, we had a conference call with Dr. Burzynski and his medical team — and it was exactly what our hearts needed. He reviewed Braelyn’s recent scans and was pleased with what he saw: the tumor remains stable, and the mild accumulation of fluid appears to be a result of cancer cell die-off — a sign that her treatment is working. He reaffirmed that her cancer continues to respond well to his protocol.

We remind ourselves often: nearly two years ago, a prestigious cancer center gave Braelyn only months to live with standard-of-care treatment. And yet, here we are — 23 months later, walking a different path, and still watching God move.

We are so proud of Braelyn’s strength, resilience, and courage. She continues to fight with grace and faith, and we are trusting that the One who holds her in His righteous right hand will continue to carry her — and us — through whatever lies ahead.

Prayer Requests:

• That we would find a compassionate and supportive neurosurgeon for future care

• Continued stability and healing for Braelyn

• Emotional peace and rest after a difficult few weeks

• Wisdom for every decision ahead

Thank you for your continued support, lifting us up, for believing with us, and for continuing to walk beside our family with love and faith.

With gratitude,

The Hollensbe Family

PS: Here is a beautiful song a dear friend shared with me. I told her that often, the only words I can manage to say in a prayer are, "God I need you. God, I need your help." This song brought me to my knees and opened the flood gates...

https://youtu.be/FciaKOyOWno?si=bmRW6RT9ZfK-40XU

We are so incredibly grateful for the outpouring of support from friends, family, neighbors and even concerned citizens from around the country we've never met. It is such a humbling experience to be on the receiving end of help and support. We extend the most heart-felt gratitude to each and every one of you who continue to support and pray for Braelyn and for continuing to share her story.

Although our health insurance covers a lot of Braelyn's treatments, seizure medications, surgeries, MRI's/imaging and home health nursing visits, it does not cover any of the care, medications and case management received from the Burzynski Clinic which we feel is giving her the best chance at healing from this dreadful disease. Braelyn has been responding favorably to his treatments for 20 months now. We are uncertain how many more months she will require his treatments, but we are very encouraged by the positive results to date. Now, we wait for the tumor to be completely eradicated, followed by an additional 8 months of his treatments. (To learn more about this amazing doctor, I recommend reading, "The Burzynski Breakthrough).

We have a few medical updates to share: Braelyn has a seizure disorder brought on by the tumor that caused drug resistant epilepsy. We were hoping that after the bulk of the tumor was removed, the seizures would resolve, but this has not been the case. Braelyn continues to take high doses of 3 different seizure medications with only fair control of her seizures. These medications cause many unpleasant side-effects including fatigue, slowing of her speech, and emotional issues. We are happy to report that switching out one of her medications for a similar med has significantly improved the emotional issues she was experiencing. She (along with the rest of us) are quite relieved!

She also met with an epileptologist on Monday. We are discussing the possibility of having Braelyn get a VNS (vagus nerve stimulator) to offer greater control (or even cessation) of her seizures. This device may also allow for decreased use of the seizure medications. Other surgical options are not possible at this time due to her still receiving treatment for her cancer, but the VNS sounds like a great, minimally invasive option to get better control of her seizures. We have been referred to a neurosurgeon in Georgia to discuss the VNS.

We are also trying to schedule her cranioplasty (to have a prosthetic piece surgically inserted to replace the missing piece of skull as a result of her last surgery). Her surgeon left "Hospital B" and it is questionable if he will be able to perform this procedure at his new job. We are hoping that the neurosurgeon in Georgia may have a recommendation. This will be a major surgery and we want to make sure we find the best surgeon possible to take care of our daughter.

The final update to report is that Braelyn had her latest MRI (with spectroscopy) yesterday. I mail CD copies of these images overnight to the Burzynski clinic after each MRI. Then, we wait several days for the medical team at the clinic to review the images before having a conference call to go over the results and review the plan of care. I cannot explain how incredibly anxiety-inducing it is to wait to go over these results with the medical team at the Burzynski clinic. We should be having this conference call the middle of next week.

Braelyn said to me earlier today, "Mom, I had a dream last night that my tumor shrank by 16% and no active cancer cells were seen on the spectroscopy." Please pray that Braelyn's dream comes true!

Please continue to pray for complete healing for our beautiful daughter, for significant improvement or even cessation of seizures which may include the VNS, that God leads us to the best surgeon to perform the cranioplasty, and that Braelyn continues to shine her light brightly for others to see.

Braelyn graduated high school last Saturday and had a party the following day with wonderful friends and family, including guests from several different states!  This moment marks an incredible milestone for which Braelyn has fought courageously.  We are all so proud of her.  We are so thankful for the friends, neighbors, family members, teachers (including the school nurses, principal, guidance counselors and support staff) and healthcare providers who have continued to support Braelyn, helping her achieve and celebrate this accomplishment!

Medical update:  Her latest MRI from April shows no growth, no progression of disease.  This continues to be reassuring news, yet we continue to pray for complete healing with no evidence of disease.  We are still trying to tweak her seizure medication to allow for fewer side effects and will be seeing a new doctor (epileptologist) next week.  

Braelyn is hoping to do volunteer work this summer and is exploring the possibility of enrolling in a CNA program.

Please continue to pray for complete healing of our daughter and that she continues to be a testimony to the love, faith and power of God.

Thank you for continuing to pray for Braelyn. She is continuing to improve everyday. She had a rough go of things after being discharged from "Hospital A" as she was still recovering from two different infections, surgery, low hemoglobin, and the flu that went through our family. Now, her energy and endurance are significantly improved, she's attending school regularly, she's no longer napping during the day and is enjoying a typical teenage social life with her friends.

She had her latest MRI and spectroscopy on Monday. The anxiety leading up to these scans is just about unbearable. We are happy to report that Dr. Burzynski as well as her surgeon at "Hospital A"  are reporting no noted growth. Dr. Burzynski is describing the results as "stable disease" with "no new tumor activity." This is amazing news and we are so encouraged! Now, we increase the dose of her IV medication and add targeted treatments/additional medications. She had been unable to start these new medications previously due to the multiple surgeries she has undergone. (These new meds interfere with wound healing and are contraindicated when recovering from surgery). Her incision from her most recent surgery is well healed and she will be starting these new medications next week. Please pray that she tolerates these new medications well and they allow for complete remission.

Some exciting things are happening!

Braelyn has been accepted (as an honorary member) to the Clemson Cheerleading Team through an organization called, "Team Impact." This fantastic group of young adults have welcomed Braelyn into their family and invite her to participate in special activities. She was in the Clemson parade a few weeks ago celebrating the men's soccer team winning the national championship. She looks forward to watching their performances at basketball and football games. This is such a great organization and we are thrilled that Braelyn get's this experience.

Braelyn also will be attending The Heart Ball through her dad's employer, Arch this weekend (along with mom and dad). We went ball gown shopping and she looks stunning in her new gown! Pictures to follow.

She has also qualified for Make A Wish and has chosen a trip to Costa Rica. She really wanted to go to a Spanish-speaking country to experience their culture and language first hand. I'm looking forward to her putting all those years of dual-language studies to use!

We are so grateful to all of you who continue to support and pray for our daughter and our family. Thank you for coming along side us as we navigate these challenging times.

I wanted to share a song with you that Braelyn and I heard on one of our many trips to "Hospital B." It really spoke to us:

"Truth I'm Standing On"

Scared, oh I thought I knew scared

But I'm so filled with fear

I can barely move

Doubt, I've had my share of doubt

But never more than right now

I'm wondering where are You

Here on the edge of fall apart

Somehow Your promises

Find my troubled heart

This is the truth I'm standing on

Even when all my strength is gone

You are faithful forever

And I know You'll never

Let me fall

Right now I'm choosing to believe

Someday soon I'll look back and see

All the pain had a purpose

Your plan was perfect all along

This is the truth I'm standing on

Good, I believe You're still good

Even when life's not good

I will not lose this hope

That the God who parts the sea

Promises He's gonna

Make a way for me

This is the truth I'm standing on

Even when all my strength is gone

You are faithful forever

And I know You'll never

Let me fall

Right now I'm choosing to believe

Someday soon I'll look back and see

All the pain had a purpose

Your plan was perfect all along

This is the truth I'm standing on

My rock, my shield, my firm foundation

I know I will not be shaken

You remind me

Where my help comes from

This is the truth I'm standing on

Even when all my strength is gone

You are faithful forever

And I know You'll never

Let me fall

Right now I'm choosing to believe

Someday soon I'll look back and see

All the pain had a purpose

Your plan was perfect all along

This is the truth I'm standing on

https://www.youtube.com/watch?v=vrWdkziEuyA

The last few weeks sure have been eventful. It started the week of Thanksgiving when Braelyn’s wound opened. We were able to manage a short hospital stay at "Hospital B" that week in order to be home for Thanksgiving. Then we returned the following Monday to see her surgeon who had been on vacation the week prior. She underwent surgery #5 last Wednesday, 11/29 to remove the necrotic bone flap and the hardware, with the expectation of another surgery to replace the bone flap sometime in the future.  Braelyn did quite well following this latest surgery until the morning we were getting ready to be discharged. She just didn’t seem quite as energetic as the previous days, had general malaise and stomach issues.  I questioned her symptoms and the docs felt her low hemoglobin and the antibiotics were the cause.  Long story short, she slept all the way home, and we weren’t home an hour when she spiked a fever of 103.  I immediately took her to "Hospital A." She was admitted and after a thorough work up, was diagnosed with a GI infection. She was treated with appropriate antibiotics and felt significantly better in about 1 day!  They decided to keep her to get antibiotics sorted out (oral and IV), rule out any other infections, and get her hemoglobin up. This hospital was able to arrange a direct donor blood transfusion which she received last night. Her dad was able to donate. The pediatric hospitalist, infectious disease doctor, and the blood connections people were absolutely amazing and worked to move mountains to get Braelyn everything she needed (especially the blood) so she could be discharged on time to attend her school’s winter semi-formal. I told the nurse how incredibly impressed we were with the personal service Braelyn received there and how everyone prioritized her wishes and goals. The nurse said this was the second time in 15 years she had seen that they were able to get a direction donation for transfusion so quickly. We feel extra special!  We are so thankful for the exceptional care we received at "Hospital A." 

Thank you for the continued prayers and support. 

We appreciate every single one of you. 

Love,

The Hollensbes

A lot has happened this first week here in Houston. We met with the entire Burzynski Clinic medical team and discussed Braelyn’s treatment plan. These doctors (and nurses and support staff) are amazing, run their clinic like a fine-tuned machine, and offer so much hope in such a “matter-of-fact” manner. Saving lives is routine for them. 

She has had her “baseline” MRI for Dr. B and had a chest catheter placed Thursday morning.  Thursday afternoon, she was hooked up to her first medication pump and started receiving one of Dr. B’s proprietary medications. We’ve been training the last few days in how to administer the meds and how to do central line bandage changes. I’m sure glad I have a medical background and am familiar with wounds and keeping a sterile field.  

We will be going in this morning for more training and will add a second pump/medication on Monday. 

Braelyn has had her ups and downs. She is being so brave and strong, but she just wants to be a normal teenager.  Tears have been shed and I know at her age, she can only see weeks into her future, but I keep reminding her that this is only one season of her life. Each day is a step forward towards being healthy and getting her normal, teenager life back. She manages to crack some smiles at my mom jokes and gives me some welcomed sarcasm along with some good laughs. 

We are so incredibly grateful for all the continued prayers and support.  Each one of you has become a member of Team Braelyn and we couldn’t do this without you. 

Love to All,

Mandy, Ben, Braelyn and family. 

We made it to Houston!  We are checked into our hotel and decided to Door Dash some dinner to eat poolside. Weather is perfect!  We are so excited to see Dr. B tomorrow.  Hopefully we get a good night’s rest. We are so grateful for the outpouring of love and support from all of you. You continue to bless us.  We are humbled and eternally grateful. We love you all.