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