Brynnik is home from the hospital

Today was one of the best days ever. 

Brynnik was released from Children's Medical Hospital today. 

The entire staff and team from the D6 Wing provided him with an amazing send-off, including his very own banner and some presents to take with him.  It was an amazing moment. 

We then "blew this Popsicle Stand" and were off to be greeted by the amazing staff at SkyHouse Dallas.  Brynnik arrived to his new bachelor pad which was decorated with a Welcome Home sign and balloons. 

After a meeting with the home health nurse, setting up Brynnik's feeds and medicines, we went up to the SkyDeck to grill sliders while taking in the amazing views of downtown Dallas. Brynnik, Darrell, Sienna and I hung out with Chelsey, Richard, Abigail and Benjamin (our new neighbors) and had some great laughs before wrapping up our evening. 

What an amazing day!

https://www.youtube.com/watch?v=6PwQG6dCptA

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

Brynnik is coming home!

THANK YOU D6 TEAM for everything!!! 

Welcome Home @ SkyHouse Dallas - thank you SkyHouse team, you are amazing

Downtown Dallas views

Daddy grilling sliders on the rooftop

She loves dressing up in my accessories and playing "Jenny dress-up" 

Hospital release and gratitude

Today Brynnik had his central line removed and replaced with a port. He was groggy and wrapped like a little burrito but very excited to be released from the hospital tomorrow.

We are SO VERY EXCITED to have the little Unicorn on his first day of hospital release.  Once he is discharged he will move into his very own bachelor pad at SkyHouse Dallas. We were talking about it last night and he is stoked to have his own pad, at nine!

This has been a very long and hard road for Brynnik and a challenge for us all. Brynnik's amazing strength and faith in God, the power of prayer, the compassion and love from all of our family, friends, coworkers, neighbors, nurses, doctors and even strangers have been a true testimony of grace. 

We also want to say THANK YOU to everyone as they continue to love and support us as we move into the second 100-day phase of Brynnik’s recovery.  A special MEOW shout out to our friends who were willing to take on 2 wild-n-crazy cats, including my 3 cat lady friends and our 2 kitty-loving neighbors who asked to take on Lacey and George for 3- to 6 months. 

In the end, we decided on SkyHouse.  It’s the absolute best decision for Brynnik’s health.  The Doctors and Nurses of the D6 Wing are very supportive of the decision to not bring Brynnik into a home/establishment built pre-1930’s given the dust, dander and air quality systems in older homes.

Starting tomorrow Brynnik begins the next stage of his recovery.  Thank you for all the blessings and answers to prayer. We have so much to be thankful for.  We are very blessed. We are very thankful. 

All of our love

The Johnson Family

Brynnik's first EZ Ride without his IV Pole

Yesterday afternoon, the nurses took Brynnik off his IV Pole for a few hours, and it was the first time Brynnik was able to experience walking without being attached to anything. It was a true moment of freedom for him. Darrell and I were so happy to be there to experience him slowly start walking around, then jumping around without having to drag his heavy IV Pole full of tubes, wires, cords, bags and feeds around behind him.

He then go onto his EZ Ride bike and took off for several laps around the D6 Wing at Children’s Hospital.  He was going so fast we had to get him to slow down a little.

My favorite part was when he was seeking up behind the nurses at the nurse’s station and surprising them. He was able to go into “stealth mode” and then started humming the JAWs attack music as he got closer to them.

SO much laughter, so many smiles, it truly was a remarkable moment for Brynnik.

Links to Brynnik’s videos:

https://www.youtube.com/watch?v=Duw_aXN3MEc

https://www.youtube.com/watch?v=mlHp6_Nu9b4

We have CELLs!!!

Today is an amazing day for Brynnik.  After 71 days in the hospital, 2 rounds of Chemotherapy, 1 full body radiation and 2 bone marrow transplants….. We have CELLS!

Brynnik’s second bone marrow transplant took place on Thursday June 18^th. We used the same donor as his original transplant; however, the Dr.’s used the donor’s stem cells and peripheral cells vs. bone marrow for his second transplant.

This morning, on day +9 from his second transplant, we received the miraculous news that our sweet Brynnik has an ANC (Absolute neutrophil Count) of 650. 

As for Brynnik’s next steps. The GCSF is causing his cell counts to be higher than they truly are.  Once Brynnik hits an ANC count of 1,000, they will eliminate the GCSF. This will cause his cell count to drop in half.

Once he stabilizes an ANC count of 500 for at least three days in a row, his body is truly engrafting.

Today marked an amazing day in Brynnik’s journey and he is ecstatic for his new cells.

We want to thank you all for your continued support, love and prayers during this difficult and taxing process. And a special thank you to all the amazing Doctors and Nurses at Children’s Medical Hospital and to all the staff in the D6 wing for keeping Brynnik, Darrell, myself, and Sienna sane throughout this process.

This is a true testament to the power of PRAYER.  Prayers through Brynnik’s next steps…. He is on his way!

OUR HERO – BRYNNIK JOHNSON

Gearing up for Transplant #2

We are so excited. Donor is doing their testing today, so we are gearing up to move forward with transplant #2.

The little unicorn will start new cocktail of chemo on Wednesday, for eight days. Then, transplant on June 17th or 18th.

This time around we are doing peripheral cells, so that they can get in his body faster, and hopefully engraftment before his body has a chance to reject them. The Drs. and nurses here at Children's Medical Center have been amazing and so positive through this harrowing experience.

They have a very aggressive plan to deal with the heightened risks involved with a second transplant with peripheral cells, which certainly alleviates some of his stress and worry, as well as mine. Praying that he doesn't get GvHD (Graph Vs. Host Disease) and that those little cells get where they need to go, as quickly as possible!

We are so appreciative of everyone's love, support, and prayers. I for one have only been able to do this because of all of you. 
Much love to you all.

Brynnik Johnson, the sleeping unicorn

Brynnik and Jennifer Johnson clowning around

http://www.gofundme.com/brynnikjohnson

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

New friends: Brynnik and Trevor

Brynnik had the best afternoon today, he played Plants vs. Zombies with his new buddy Trevor Harvey. I so appreciate Ginney and Buddy for taking time out of their afternoon to bring their wonderful grandson Trevor down for a visit. These two little guys are becoming fast friends.

Trevor donated his Xbox One system to the D6 wing of Children's Medical for Brynnik to use during his stay, and for the other children of this unit to use upon his release. Trevor is such a thoughtful and sincere little man. When they are together, it's as if Brynnik and Trevor have known each other their entire lives.

Thank you again to the Harvey family, and to Ernie Estrella and family for the Plants vs. Zombies game gift. It's definitely getting put to good use!

First meeting!! Brynnik and Trevor

Brynnik and Trevor bonding over Star Wars, car games and Plants vs. Zombies

Brynnik and Trevor bonding over Star Wars, car games and Plants vs. Zombies

New hospital door design, by Brynnik and Trevor 

http://www.gofundme.com/brynnikjohnson

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

Guess who loves him some French Toast Sticks. This Guy!

#Brynnik, #brynnikjohnson, #brynnikjohnsondallas, #brynnikdallas,

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

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/

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