Team Brooklyn

05/13/2026

First, I want to apologize for the long post and the length of time between the updates. It has been difficult to find the words, and even harder to live the reality behind them.

When Brooklyn was discharged from the hospital and sent home on hospice, we were told her time here with us may only be days to a few short weeks. Somehow, through every impossible moment, she is still here fighting.

Each day continues to bring changes as we watch this wretched disease slowly take more from her. The decline has become more noticeable daily, and there are moments that are incredibly hard to put into words. Brooklyn has now lost most of her vision, she’s become immobile, we no longer hear her sweet voice, or see her beautiful smile, and she sleeps the majority of the time.

Even in the middle of all of this, Brooklyn continues to show a strength that humbles everyone around her. Her courage throughout this journey has been nothing short of extraordinary. She is deeply loved, fiercely cherished, and surrounded every moment by people holding her close through this impossible battle.

Our days are now centered around keeping her comfortable, peaceful, and surrounded by love. We are cherishing every moment we are blessed to have with her — every touch, every breath, every second by her side.

In this journey, we simply cannot understand why Brooklyn has had to walk this road. No child deserves this kind of suffering. It is not fair that she will never have the chance to grow up, chase her dreams, or live the life she so deeply deserves. No child should have to lose so much, endure so much, or fight this hard just to stay here on earth.

As her parents, it is heartbreaking to watch this disease continue taking pieces of her day by day. We would take every ounce of this pain from her if we could. Thankfully, she has not complained of any physical pain, and for that we are incredibly grateful. But watching your child suffer while feeling powerless to stop it is a kind of heartbreak words cannot fully describe.

I know Matt feels the same way, but I do not think we will ever forgive ourselves for not being able to find the right answer to heal her. As parents, you spend every second wanting to fix it, willing to try anything, to take it all away, and trade places if you could. We would carry this burden ourselves a thousand times over if it meant Brooklyn did not have to.

Even in the middle of this heartbreak, we are still holding tightly to hope for a miracle. We continue to pray for more time, for healing, and for moments we never want to end. As long as Brooklyn is here with us, we will continuing believing, loving her fiercely, and walking beside her through every second.

Brooklyn is so much more than a diagnosis or another statistic - she is our daughter. She is loved beyond measure, and she deserves to be remembered for the beautiful, courageous, extraordinary person she is - not for the disease that is trying to take her from us.

The love, prayers, messages, meals, and support you have poured into our family have carried us through some of the darkest moments imaginable. We cannot adequately express our gratitude for how deeply Brooklyn has been loved and supported by so many people.

We ask for your continued prayers — for Brooklyn’s comfort, for peace in the hard moments, and for strength for our family as we walk through each day beside her. Above all, we pray she continues to feel wrapped in love every second of this journey.

03/08/2026

There truly are no adequate words. Brooklyn’s latest MRI results were devastating—far beyond what any word(s) can fully capture. The scans showed what we prayed we would never have to face, and it feels like our worst nightmare.

Because of the progression of the tumor, Brooklyn is no longer eligible for the clinical trial in Seattle. Over the past couple of weeks, we began noticing weakness on her right side and symptoms that resembled a stroke. Her newest MRI confirmed significant growth in the primary tumor. The doctors explained that the growth has caused what they call a midline shift causing smaller ventricles and pressure on her left side of the brain.

With how quickly things have changed, the doctors have prepared us for the reality that Brooklyn’s time may be very short. At this point, their focus is on keeping her comfortable and surrounded by love.

We ask for your continued prayers—for Brooklyn’s peace, comfort, and strength—and for our family as we walk through the days ahead with her.

02/21/2026

Brooklyn Update

We had a Zoom meeting with the Seattle Children’s doctor on Thursday. On Friday, the nurse coordinator called to start working through the logistics and everything that needs to happen before we can travel there.

We are currently coordinating with Children’s of Alabama (her regular doctors) to schedule two MRIs — one of her brain and one of her spine. They will be on separate days because both scans will be long. She will also need a lumbar puncture. The tentative schedule will be Brain MRI 3 Mar, Spinal MRI 4 Mar, and Lumbar puncture 5 Mar.

Once those results come back and everything looks okay, we will fly to Seattle for about five days. While there, they will do a procedure to place a line in a vein in her neck (similar to an IV but with a larger tube). This will be used for a process called apheresis, where they draw out her blood and separate the parts they need.

They will then engineer her T-cells and later place them back into her brain fluid.

If the process doesn’t work the first time, they will try one more time. If it fails a second time, she would unfortunately be ineligible and would not be able to receive T-cell therapy in the future.

If everything goes as planned, she will need another procedure to adjust her shunt so it can be programmed. This will allow the doctors to administer the T-cells directly into her brain fluid.

After that, we would return to Seattle and need to stay there for eight weeks. Brooklyn is required to be within one hour from the hospital during the trial.

It’s a lot of information and definitely scary, but it also gives us hope. 🙏

02/08/2026

Hello everyone!

I just wanted to share an update on Brooklyn. She had her regular doctor’s appointment followed by her MRI 4 Feb. We are happy to report that she does not have any new areas and the last two radiated areas are responding as expected. We are so thankful to God for the positive news!

We also received news about the Seattle trial, and Brooklyn is next on the list!! Seattle will still have to review all of Brooklyn’s records but Brooklyn and I signed the consent forms to participate in the trial. We are hopeful it will not be much longer before we can get started and Seattle will still move forward after completing their review.

We are so grateful for the continued love, prayers, and support you show Brooklyn and our family. It means more than words can express.

01/12/2026

I hope everyone had a very Merry Christmas and a Happy New Year!

Brooklyn began her third round of radiation on 30 December and completed five total fractions (December 30–31 and January 5–7). This round looked different, as it involved stronger doses delivered over a shorter course of treatment. Her radiologist supervised each session. As with her previous two rounds, Brooklyn did very well—she experienced no sickness or headaches during treatment.

She has also been taking the newest FDA-approved chemotherapy for her type of cancer. This medication is taken orally once a week, and she has now been on it for four weeks with no side effects so far.

Brooklyn’s next MRI is scheduled for 4 February. We hope and pray this scan will not bring more devastating news. Since mid-2025, it feels as though we have endured blow after blow of difficult news. We can only imagine how Brooklyn must feel through all of this. We continue to pray that God will guide us toward a path of healing.

Stanford reviewed Brooklyn’s December MRI and has decided to remove her from their trial waiting list. They stated that, due to disease progression, it would be unsafe for her to undergo the trial. This was one of our greatest fears—that decisions would be based solely on scans rather than Brooklyn as a whole person. We are considering sending Stanford an email and possibly a video of Brooklyn to ask them to reconsider, as she currently has no physical deficits. Hearing the words “not eligible” is incredibly disheartening. How can such a decision be justified when parents are willing to take the risk—especially when there are so few options available for Brooklyn?

We have not yet heard back from Seattle, but we would not be surprised if they reach the same conclusion. The frustration and heartbreak are overwhelming. It is truly gut-wrenching.

We had inquired about several other trials, but unfortunately those are not options for Brooklyn either—due to eligibility requirements or because enrollment has not yet begun. However, on Friday, when we received the news about Stanford, Dr. Littrell shared that she has identified another potential trial. Once we know more and confirm whether Brooklyn is eligible, we will share additional details.

Please continue to pray for Brooklyn and for God to open the door to her healing!

12/23/2025

Brooklyn is officially a teenager!! 🙏🏼

Brooklyn was able to spend the night with friends yesterday. Her day was filled spending the day with them getting nails done, hanging out, having dinner, going to the tinsel trail, presents, cookie cake, cards, but most of all LOVE!

HAPPIEST OF BIRTHDAYS TO BROOKLYN!

Tomorrow (23 Dec) Brooklyn will be fitted for another radiation mask and do a simulation for her next round of radiation. She will only have to do 5 fractions this round. We pray the radiation will control the new area.

As always, THANK Y’ALL for LOVING and PRAYING for OUR BABY!!!

12/19/2025

We unfortunately did not receive the MRI news we were hoping for Tuesday. Brooklyn has a new lesion/flare on the right side of her brain. The radiologist is confirming whether this new area is outside of the recently treated radiation field, and if so, the doctors will develop a plan to radiate this new area.

The radiation should be similar in length and strength to the most recent treatment Brooklyn underwent. We are hopeful to know more within the next couple of days and to have a plan in place soon, possibly starting at the beginning of the year.

The good news is that the areas on the left side of her brain that were recently treated are responding as expected, and we are thankful for that.

While this is not the news we wanted to hear, we know we are incredibly blessed. Brooklyn is a MIRACLE, and I pray she will continue to be the miracle. God has blessed us beyond measure. Her doctors remain amazed by her, and I pray she continues to defy expectations in ways that can only be explained by divine intervention and God’s miracles and blessings.

Next week, Monday, December 22, Brooklyn will turn 13! We cannot believe she will officially be a teenager! We are beyond thankful she is here to celebrate this milestone.

12/16/2025

Brooklyn started a new medicine today. This medicine was recently approved by the FDA for DMG with the specific mutation Brooklyn has. This was one of the trials we attempted trying after Brooklyn’s first round of radiation but were told at the very last minute she was ineligible. We are praying this will be the stepping stone (keep everything stable) to get us to one of the t-cell trials. We still do not know when, or if, we will get the call that they are ready to accept and officially enroll Brooklyn.

Brooklyn will have her post radiation MRI tomorrow (Tuesday, 16 Dec). We are hoping and praying the radiation will, at the very least, stabilize the progression areas. Brooklyn’s team of doctors did say that both Seattle and Stanford are interested to see her latest MRI results. Hearing that gives us hope and reassurance that Brooklyn is on their radar.

Please continue to lift Brooklyn up in prayer and surround her with your love! We cannot thank you all enough for your unwavering support for our family. ❤️

11/19/2025

Thank you all for your continued love, support, and patience. We wanted to share an update on how Brooklyn has been doing over the last few weeks.

Brooklyn completed her second round of radiation on Friday, November 14. She handled it very well with minimal side effects. This time she didn’t want to ring the bell, but she did choose to keep her radiation mask as a memento. One of the wonderful receptionists at the Hazelrig-Salter Radiation Oncology Center also gifted her a Dr. Seuss–themed cancer shirt that she makes for patients finishing treatment.

Her post-radiation MRI is scheduled for December 16, and we ask for continued prayers for a good scan—stability or shrinkage in all treated areas.

She has been struggling significantly with appetite and weight again. She reached her lowest weight yet (84 lbs). About a week into radiation, the oncology team started her on steroids, which have helped improve her appetite and allowed her to regain a little weight. The steroids will end in a few days, and we’re hoping her appetite will continue to hold on its own.

The past couple of weeks have been busy with new introductions to members of Brooklyn’s care team, including a psychologist, palliative care, an art therapist, and a physical therapist. Each has been impressed by how well she continues to do given her circumstances.

We still have not heard from Seattle or Stanford regarding the CAR-T cell therapy trials. Brooklyn remains on the waitlist, and her oncology team continues to send updates to the trial centers. We’ve been told that we won’t know her position on the waitlist until the trial boards reach out to Brooklyn’s oncology team/us.

On a positive note, Brooklyn’s spinal MRI came back clear!

Brooklyn was able to trick-or-treat for Halloween. She walked part of the way, then rode in her wheelchair, and although she tired out early, she still enjoyed being part of the fun with her friends.

We also took her to MANIA: The ABBA Tribute, which we had planned months ago. Brooklyn LOVES ABBA, and being able to attend—surrounded by her closest friends—was incredibly special. Seeing her happy and enjoying herself meant the world to us.

Thank you for continuing to hold Brooklyn in your thoughts and prayers. Your support truly lifts us up.

11/15/2025

10/22/2025

Please Pray for Brooklyn 💔🙏

The past several days have been heavy with heartbreak. Families all around us—one even from our hometown of Arab—have had to say goodbye to their children: Branson Blevins, Lainey and Ellie Anderson, Cal Guess, and Kimber Mills are just a few precious souls lost too soon. We grieve with them. We carry their names in our hearts. There are no words for how unfair it all is. No family should ever have to face this kind of pain.

And yet, we are terrified this could be our story too.

Brooklyn is still fighting. She is the bravest, strongest soul we’ve ever known. We continue to pray for a miracle—that God will heal her completely and she will defy every odd, every statistic, every heartbreaking prediction. That Brooklyn will be the miracle.

She completed Cycle 1 of her new clinical trial and had an MRI this past Monday. Yesterday (Tuesday), we met with her care team for the results, praying she’d be able to start Cycle 2.

Unfortunately, the MRI showed devastating news.

For several months now, each MRI has been harder than the last—while the primary tumor remains stable, there are more new areas, more rapid changes. This one was no different. Because of that, Brooklyn will no longer continue on the trial and must begin reirradiation immediately.

This round of radiation carries more risk—it will cover much more of her brain than before. But we have no choice. Time is not on our side. We are praying it will give us time. A path forward. A chance at one of the CAR-T trials we’ve been trying to get into at Stanford or Seattle. We haven’t heard back yet, but we are still hoping and praying for a door to open.

Please, keep praying with us. For peace. For strength. For healing. For Brooklyn. She does not deserve this. No child does.

But we believe miracles still happen.
And we are asking for one.