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

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. 

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

Family weekend

We had a wonderful family weekend despite a little bit of cold and some rain.  I love our family weekends together, we love to keep the kiddos active and busy with play dates and lots of family time together. 

Some highlights and pictures from our weekend.....

Darrell finishing the exterior at Oak Knoll

Jennifer having kiddo time on Saturday morning, snuggling watching Legally Blonde

Surprising Darrell on the job site for family kisses and hugs

Shopping for Nerf guns, Monster High dolls, and sugar free Red Bull at Target

Chick-fil-A lunch and playground time

Jennifer and the kiddos "car dancing" to our favorite tunes

The kids having a blast during their play dates with Gabby and Frank 

Oak Cliff Pizza and move night - Big Hero 6

FAMILY SNUGGLE before bed

Church at Shoreline Dallas 

Family brunch at iHop

Butter pecan syrup

Lots of laughs and hugs 

Hook, Line and sinker for Brynnik

Darrell and Sienna making shells for dinner

Darrell bringing me home blue hydrangeas 

Mr, and Mrs. Fox over for dinner

Mr. Fox playing zombies with Brynnik and Sienna

Introducing the Foxes to the evils of Little Debbie snack cakes

More family snuggles... lots of family snuggles when we are together. 

Lots and lots of love. 

Darrell Johnson at Oak Knoll

Kiddos coming home with their presents from Target

Brynnik and Darrell at iHop

Brynnik and Darrell at iHop

Brynnik working his "nerd" at iHop

Brynnik Johnson - the ninja skull warrior 

Darrell the shell master at work

Darrell and Sienna making shells

Darrell and Bean making shells

George and the beautiful flowers

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