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 Greenville Hospital 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 Duke surgeon (Dr. Vestal) 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 Duke. 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 Duke 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 from Duke. 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 Greenville Children’s Hospital. 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 our local Children’s Hospital. 

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.