Showing posts with label #familylove. Show all posts
Showing posts with label #familylove. Show all posts

Monday, March 23, 2015

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. 

Friday, March 20, 2015

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. 





Friday, March 13, 2015

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.

Brynnik Johnson, Darrell Johnson
Clowning around with my sweet son Brynnik













Sunday, March 8, 2015

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