Brynnik's hospital visit: 2/24/2015

Quick update on Brynnik's hospital visit on 2/24/2015:

My little unicorn had to come in a day early for blood tests. He was in desperate need of platelets and red bloods, with his platelet count down to 3 and his RBC count down to 7.4. During our day stay at Children's Medical Center, Brynnik learned how to put in an IV and did a little painting. His sister Bean was by his side the entire day for added support and love. The hematology team took some of her blood for the Telomere Test.

Telomeres are sections of DNA at the end of each chromosome that serve as a cap to your genetic material. Every time a cell replicates, its telomere will become shorter. Shorter telomeres imply a shorter life span for a cell.

Brynnik's Telomere Test results reflected a man in his mid-50s. Testing his sister at this point might provide some insight into her DNA and the age of her chromosomes.

It was a long day for us all. No matter how long of a day it is, or what comes my way, I keep strength in how much I love both my babies, and how strong, loving and courageous they are.

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Brynnik Johnson

Brynnik Johnson with his sister Sienna 

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Brynnik Johnson - Meeting the Transplant Team

Today we met with the transplant team at Children’s Medical to discuss next steps and have the opportunity to ask a lot of questions.
We are waiting on one Fanconi Anemia test and the results from skin biopsy to come back as they are still trying to diagnose the cause of the bone marrow failure, and have a better idea of which type of chemo he will receive, etc.

Unfortunately, regardless of the cause, the outcome is still the same. We are still looking for a 9 to 10 point match for his bone marrow transplant.

Once they have a match, there are additional tests that need to be conducted on the potential donors, and Brynnik will need to undergo a week of chemotherapy before they will introduce the new bone marrow or stem cells.

We covered several potential outcomes, best scenario situations, worst case scenarios, and overall expectations. It was a heartbreaking conversation. Sitting with your 9-year old son, in a small room with doctors discussing survival rates and percentages is a parents worse nightmare. I’m focusing my strength on my son, who I am trying to keep positive through all of this. And I am praying constantly to God to provide me with the strength I need for Brynnik at this time.

Thank you all for your love and support to Brynnik and our "family" during this time. My sweet little man has a tough road ahead of him, and we deeply appreciate all your love, kindness and support.

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Brynnik on Anabolic steroids

The doctors have started Brynnik on an anabolic steroid (Anadrol) to help strengthen him and hopefully minimize the frequency of his transfusions, while they continue to run tests, and search for a donor match. Brynnik asked if he would be able to grow a handle bar mustache. God, I'm amazed at the strength of this kid. With all that's happening he's still smiling, still laughing, still helping others, still being an inspiration to us all.

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Brynnik Johnson - How it all started.

We have posted many updates since the initial post outlining what had been going on with Brynnik - this was the initial post in November 2014. 

In November 2014 I took my son in to see the pediatrician after noticing bruises all over his legs, arms and back. She immediately sent us to Children’s Medical Hospital where after 2-days of blood tests and a bone marrow biopsy it was determined that his bone marrow was either not producing, or, destroying his platelets. He was low on red and white blood cells, but the severity of how low his platelets were flagged that something was seriously wrong with Brynnik.

Brynnik has been going to Children’s on a weekly basis to check the levels of his red blood cells (RBC), white blood cells (WBC) and platelets.  Each week he has received some form of blood or platelet transfusion, and at times, he has received multiple transfusions given how severely depleted his platelets have been.  

The doctors at Children’s have tested for every known and several extremely rare diseases, ultimately trying to determine what has caused Brynnik’s bone marrow to stop producing red blood cells and platelets. 

Brynnik went back to Children’s on January 15 2015 for his second bone marrow biopsy where it was then confirmed that he will start chemotherapy in approximately 4-weeks, depending on donor match, to destroy his existing bone marrow.  Once that phase is completed, which should take 7 consecutive days in the hospital, he will then go through a bone marrow transplant, which will take a minimum of 45 consecutive days at Children’s Hospital. 

Brynnik’s sister unfortunately is not a bone marrow match, and we are actively searching for a match through the Bone Marrow Registry.

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