Happy sleeping baby

So so SO happy to have the baby home sleeping peacefully. 

Sweet angel. 

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 apartment

Yesterday we signed the lease on Brynnik’s “bachelor pad” for the first 100-days after his release from the hospital.

The first 100-days are absolutely critical to his care and well-being, and Darrell and I feel whole heartedly that putting him in an apartment which is brand new construction, hepa-filtered apartment unit, where he will be the very first resident of his unit, is the most responsible and smartest option when it comes to his health.

Brynnik is not allowed to be around plants or pets for the first 100-days.  He will be leaving the hospital on a feed and 20+ pills a day, so he still has a way to go.

Brynnik will be released from the hospital next week and will move into SkyHouse Dallas upon his release.  He will stay there during all the days and nights we have him, which is 50% of the time.

We showed Brynnik his new “digs” yesterday through photos and a video, and he is super excited to move into his new place.

Darrell and I care only about his health and what is best for him, and we are so thankful to the SkyHouse team and everyone at Simpson Property Group who made this happen for us. I work with the most amazing and talented people, and I am so grateful to them, and thankful for their kindness, care and compassion as our family has been going through this trying time.

Here is to the next 100-days!

Video of Brynnik’s new ADA studio unit below:

https://www.youtube.com/watch?v=TaSR90-33w8

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

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

Sibling love

The sweet donuts were able to spend a little bit of time together this morning. Such cuties. 

#brynnik #brynnikjohnson #brynnikdallas #dallas #sienna #siennajohnson 

Www.gofundme.com/brynnikjohnson

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

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"