Brynnik's bone marrow biopsy results

We received Brynnik’s results from his bone marrow biopsy yesterday. Unfortunately he is hypo cellular. Meaning the transplant wasn't successful.

We are currently waiting to hear if the original donor is willing to make another donation, as there are no other matching donors in the bone marrow registry right now. He's very neutropenic right now. His white blood cells are at 0.1 which means he has no way of fighting off the simplest of infections.

Because of this ...we have decided to severely limit visitations, though he has enjoyed everyone's time with him, and we're so grateful to all the people who have made him smile. At this time we're not sure how long we'll be here, there are so many unknown factors and additional risks the second time around.

We are so grateful to everyone for the love, words of encouragement, support, and prayers. It's definitely made a world of difference to us all through this season of challenges.

#brynnik, #brynnikjohnson, #brynnikdallas, #Aplasticanemia, #Bonemarrow, #bethematch

http://www.gofundme.com/brynnikjohnson

Joy Macarons

A very special THANK YOU to the lovely Liz Lanier of Joy Macarons; her delicious gift for Brynnik’s nurse and tech staff at Children’s Medical Hospital was a huge hit!  Brynnik handed them out to the delight of the Drs and nurses in the D6 wing.

It brought JOY to everyone, especially Brynnik. 

More about Joy Macarons:  http://www.joymacarons.com/

Brynnik Johnson’s fund: http://www.gofundme.com/brynnikjohnson

Brynnik and his bag of JOY

Daddy's Birthday Celebration

Celebrating Daddy's birthday with Sienna and Brynnik at Children's Medical Hospital in Dallas, TX. Happy birthday Darrell Johnson

AND look who dropped by - The Foxes!  

Celebrating Daddy's birthday as a family with lots of love and laughter, and mustaches. 

The Johnsons: Jennifer, Darrell, Brynnik and Sienna

The Johnsons: Jennifer, Darrell and Brynnik

The Johnsons: Jennifer, Darrell, Brynnik and Sienna

Brynnik's artwork for Darrell's birthday

Fox and JJ

Fox and JJ

Fox, Sienna and JJ

Sweet Brynnik with his "stache"

THE GANG! Sienna, Fox, Mr. Fox, Jennifer, Brynnik and Darrell

Jennifer and Brynnik

Sienna and Jenny

Sienna and her stache

Darrell, with ducklips and stache

http://www.gofundme.com/brynnikjohnson
http://www.brynnikjohnson.com

#brynnik, #brynnikjohnson, #brynnikdallas, #brynnikjohnsondallas, #bonemarrowtransplant, #childrensmedical

Oak Cliff Lemon-AID stand for Brynnik

The Gracia family is truly a remarkable family.  Rene and Amber, with their thoughtful and compassionate children, Roman and Siena, created a Lemon-AID stand for Brynnik. Siena came up with the idea of creating a Lemon-AID stand as a way of doing more for Brynnik while he is in the hospital. She was very specific in the stand’s name, focusing on the connection between lemon and aid.

Siena, her brother Roman and neighborhood friends Maddie, Spencer, Mia and Grace created and executed an amazing Lemonade Stand in Oak Cliff in which all proceeds would go towards Brynnik Johnson’s fund at www.GofundMe.com/BrynnikJohnson

By Sunday the kids had created a partnership with Urban Farms http://urbanacresfarmstead.com and utilized their patio space for Brynnik’s Lemon-AID Stand. These “little” women and men are truly remarkable.  They are the epitome of C-level executives in the making. The pricing, sales and marketing strategies were mind-blowing.

We are truly grateful for the care and concern shown by these thoughtful young adults. It speaks volumes of their amazing parents who have instilled a mission within their children to give back and help those in need.  As 10-year old Maddie explained to me: “I want Brynnik to be healthy and live a full life, and to make it out of the hospital so he can have a glass of lemonade with all of us.” 

Our sincerest gratitude and love for everything you did this weekend for Brynnik. He, and we, are deeply touched and moved by your generosity, love and support during this time.

Love Brynnik, Darrell, Jennifer and Sienna Johnson

http://www.gofundme.com/BrynnikJohnson

Brynnik's Transplant Day

Today is Day Zero for my little unicorn. My brave, strong man has endured 4 grueling days of intense chemotherapy and 1 day of radiation in preparation for today. To say the past 5 days have been grueling is an understatement, for both Brynnik and our family. Physically and emotionally challenging, with new challenges appearing hourly at times. It’s all worth it, as it provides the ability and opportunity my baby to become well and survive. A second chance at life.

Today is that day. We celebrated his second birthday tonight. We wanted to celebrate his bravery and strength, and all that he has done and endured to make it to today. He has a long road ahead which unfortunately starts tomorrow, Day One, with a second round of chemo which will make the initial chemo treatment look like a day at Disney.

I thank you all for your kind words, your prayers, your thoughts, your help, and all the love and caring you all have shown Brynnik and our family. I am so proud of my little man, and so thankful for our friends, family and supporters during this time.
Blessings and much love from myself and my family.

Love, Darrell, Jennifer, Brynnik and Sienna

#brynnik, #brynnikjohnson, #bonemarrow, #bonemarrowtransplant, #dayzero, #brynnikdallas, #brynnikjohnsondallas, #family, #bonemarrowsurvivors

http://www.gofundme.com/brynnikjohnson

Brynnik Johnson

The Johnson Family: Sienna, Brynnik, Darrell, Jennifer

Brynnik and Jennifer Johnson

Brynnik's new admittance date

Brynnik's new admittance date is the 17th. The circularity of his last bone marrow biopsy changed significantly from his previous ones. 

After months of a blanket diagnoses of Bone Marrow Failure, we finally have an official diagnoses of Severe Aplastic Anemia (SAA). That being said, his new pre-transplant therapy includes radiation as well as chemotherapy. 

Brynnik finished radiation simulation at UT Southwestern yesterday. He was very patient as the radiation team vacuum packed him into his form while taking tons of measurements. Brynnik said he felt like an action figure being packaged into a plastic sleeve. The boy has jokes. 

Thank you everyone for your continued love, support, and prayers.

http://www.gofundme.com/brynnikjohnson

Brynnik at UT Southwestern

Brynnik's robe might be too big

Head shave party

Darrell and Brynnik had a head shave party over the weekend at Brass Tacks Barbershop.  With Brynnik being admitted into Children's Medical Hospital this coming Tuesday, Darrell wanted to be preemptive and shave both their heads prior to Brynnik starting chemo this week.

The boys went in, with Brynnik going first. He's such a strong little man. I took videos and pictures of their experience, links to them are below.

In addition to Darrell and Brynnik shaving their heads, Darrell's brother Jay who lives in Florida, shaved his head in support, as did our good friend Tony Guthrie.

Thank you for all your love and support.  I am so proud of Brynnik and Darrell, they are amazing examples of strength and love.  

Darrell, Sienna and Brynnik. I love my amazing family. 

Brynnik Video 1: https://www.youtube.com/watch?v=ka4FzXMjy8s

Brynnik Video 2: https://www.youtube.com/watch?v=0zbFQWHZDeA

Darrell Video 1:  https://www.youtube.com/watch?v=Cu35JI8m89w

Darrell Video 2: https://www.youtube.com/watch?v=jB_9EIx4hOU

Photos of Uncle Jay and "Mr. Fox:"

Love you Uncle Jay

Yea Uncle Tony "Fox"

How donors and patients are matched

How donors and patients are matched?

Donors and patients are matched by their HLA type, which is different from matching blood types. A simple cheek swab can help us determine whether you’re a close bone marrow match for a patient.

The best marrow transplant outcomes happen when a patient’s Human Leukocyte Antigen (HLA) and the HLA of a registry member or cord blood unit closely match. This is much more complex than matching blood types. HLA is a protein (or marker) found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not. There are many HLA markers that make a person’s tissue type unique; however, matching certain markers is what is critical to a successful transplant.

What makes a close match?

Be The Match Registry® is a listing of potential donors and cord blood units and their HLA types. When people join the Be The Match Registry, they provide a sample of their DNA by swabbing their cheek. This cheek swab is tested for a minimum of 6 basic HLA markers.

A patient’s doctor will usually choose several donors who appear to match the patient at a basic level. The doctor will ask that these donors have additional tests. These detailed tests will show which donor’s HLA most closely matches the patient’s HLA markers. These tests are usually blood tests or additional cheek swabs.

About 8% of members who complete additional testing will go on to donate. If a member is asked to donate, that means they are the closest HLA match to the patient – the best donor.

Brynnik Johnson and his donor. 

Post hospital burgers

Brynnik, Darrell and I were chowing down on some tasty burgers at Hunky's this afternoon.  The little man needed protein and iron, and Darrell and I are always up for a good burger. 

Enjoying time at Hunky's with Brynnik

Enjoying time at Hunky's with Brynnik

Brynnik has a bone marrow donor

It's official. Brynnik has a 9/10 A level donor. Thank God. 

He started his pre-chemo, pre-transplant testing yesterday and today. GloFil test today to measure his kidney function. Echo, EKG, and pulmonary function test. Things are moving fast now. My little unicorn is in for several trying months. But, we are believing in a full recovery. Thank you everyone for all of your kindness, prayers, and support. Much love. 

http://www.gofundme.com/brynnikjohnson

Proud Members - Bone Marrow Registry

We are proud members of the Be the Match Marrow Registry

Support the cause and join the Bone Marrow registry today - you could be the cure a patient has been waiting for.  

Join today. 

http://www.bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/Join-now

Clowning around with Brynnik

Clowning around while getting blood today. Hopefully getting final donor results today. Drs. are going to start scheduling the unicorn man beasts CT scan, ultrasounds, breathing, etc. etc. tests for next week. We got Beans telomere results back. Her Granulocytes are low, so now they are going to run TERTS test on her to see if she has the same unknown chromosomal anomaly as her brother. God never gives you more than you can handle. Not sure He doesn't have me confused for someone else. But, he certainly gave Brynnik his heart and strength. I'm so grateful to have such an amazing wife and partner who has stood by our side, keeps us laughing, and gives awesome snuggles.

Clowning around with my sweet son Brynnik

Be The Match

For thousands of critically ill blood cancer patients, there is a cure.  And it could be you.

Over the past 25 years Be The Match^®, operated by the National Marrow Donor Program^® (NMDP), has managed the largest and most diverse marrow registry in the world. We work every day to save lives through transplant.

Sign up today and save someone’s life.

Join the registry through the following link:
http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/Join-now/

Learn more about Be The Match at http://bethematch.org/

Brynnik Johnson update - March 6th

Back at Children’s Hospital this morning, Brynnik needs a new set of platelets, so it’s transfusion day. The Dr.’s checked his ferritin levels because he has received so many transfusions since this started back in November. His ferritin levels came back at 856, with normal ranges between 7 - 140.

Even with the significant elevation of his ferritin levels the doctors don’t seem to be as concerned; however, they definitely want to keep an eye on them as there is a potential it could pose a problem once we are in the chemotherapy and bone marrow transplant phase.

Good news is we have two potential donors. One is an international donor and conducted their testing last week. Children’s is waiting for their samples so that they can perform their own HLA tests. The other potential donor is stateside and had their testing conducted just yesterday. Hopefully we will have the results from both potential donors back next week.

We keep praying that both donors will be a match for Brynnik. In case he had a host versus graft reaction during the transplant phase, having a second donor lined up in advance would be very beneficial.

I am continually amazed, humbled and inspired by how strong he is throughout this whole ordeal. God certainly made him a warrior.

http://www.gofundme.com/brynnikjohnson

Brynnik Johnson at Children's Medical Center - Dallas, TX

Darrell and Brynnik Johnson

#brynnik #brynnikjohnson #bonemarrow #bonemarrowtransplant #bethematch

Brynnik Johnson taking a spin around the hospital

Brynnik Johnson and Darrell Johnson "taking a
spin" during Brynnik's red blood cell and platelet transfusion today at
Children's Medical Hospital. #brynnik #brynnikjohnson #brynnikjohnsondallas #brynnikdallas #bonemarrow #bonemarrowtransplant

Brynnik on Anabolic steroids

The doctors have started Brynnik on an anabolic steroid (Anadrol) to help strengthen him and hopefully minimize the frequency of his transfusions, while they continue to run tests, and search for a donor match. Brynnik asked if he would be able to grow a handle bar mustache. God, I'm amazed at the strength of this kid. With all that's happening he's still smiling, still laughing, still helping others, still being an inspiration to us all.

#brynnikjohnson #gofundmebrynnikjohnson #bethematch #brynnikjohnsonfund #brynnikjohnsontransplant

http://www.gofundme.com/brynnikjohnson