Fever post bone marrow transplant

We are on our second round of fever tonight. We are on day +16, and engraftment happens. On average, between days +21 to +30, with some children taking up to day +40. 

The biggest concern with the recent fever is it could be the initial signs of an infection. On the opposite spectrum, it could be the initial signs on engraftment . 

They took 4 syringes of blood out of Brynnik's central line for testing and to run cultures. They are starting him on a broad spectrum antibiotic to help against the potential risk of infection.  

Luckily he is sleeping peacefully right now. 

Please say any extra prayer for Brynnik tonight. 

And thank you again for all your love, compassion and kindness during this time. 

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

Day +11

We've had some good moments, followed by lots of sleeping and nausea. And, his hair is coming out in patches. But, he is still able to find joy and laughter each day. I'm so proud of him. He truly is a magical little unicorn. 

http://www.gofundme.com/brynnikjohnson

The Artist, Brynnik, at work

Brynnik cuddles are the best

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 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