Wednesday, June 12, 2013

The Call and The Twitter


Yesterday afternoon I received "The Call" we've been hoping for. I had to pull the car off the road so I could concentrate. It was my stem cell transplant coordinator. She said that there are 2 perfect matching donors (10 for 10 match of HLA tissue sequence) for me. One of them is bound to come through for me so we can transplant next month (July). We should have confirmation and a scheduled date sometime next week.  
Of course, nothing is final until it's final.  But we are over the moon happy with anticipation.


On my way home, I managed to reach Robert, my mom, my dad, and my siblings by phone to share the news. When I returned home, I gathered Katrina and Alexander to let them know. I then told some dear friends. 
I was too excited yet too tired to cook, so the kids and I went out to dinner. 

Before we place our food order, their phones began vibrating and beeping like they were about to explode.
The kids were trying to ignore their phones and focus on me. Between their furtive glances and the sounds and vibrations from the phones, my curiosity got the best of me.  "What is going on with your phones? Go ahead and check them," I said.  

"It's Twitter."
"And Instagram."
"Your news is getting re-tweeted all over the place, mom!"

Just then, my phone started dinging with text messages.. Congratulations from friends who learned from their kids that I've got a match.

My head started spinning. How could my news be tweet-worthy?

I confess to be in a bit of shock and quite tired. Here is how I can answer the questions most of you have.


Q:     What do you now about your donor?
A:     I only know that this person has a big heart for others and our HLA sequence is a great match.  We will be anonymous to one another for a year. I don't know gender, age, ethnic background, or where this person lives.

Q:     When will the transplant occur? Does the donor come to Atlanta?
A:     I should know the transplant date and prep schedule next week.  The MUD (Matched Unrelated Donor) Coordinator at Northside Hospital will coordinate with the marrow donor registry with whom the donor registered (e.g., Be the Match or Delete Blood Cancer). The registry staff will communicate with the donor to determine timing and logistics and report back to the MUD Coordinator. The MUD Coordinator shares the info with my Transplant Coordinator who gives me the transplant schedule and plan.

My hero (aka donor) doesn't leave his/her community. The donor will get a daily injection of Neupogen (filgrastim) to stimulate stem cell production for several days before the stem cells are collected from the bloodstream. 
When the blood stem cells are collected, they are shipped to Atlanta immediately so I can receive them via transfusion the next day.

Q:    What happens between now and the transplant?
A:    I'm told my primary job is to remain healthy ~ no colds, viruses, infections. I need to learn to count backwards, too. 

- 3 Weeks:  I will undergo a series of tests to check the condition and health of all my major systems. 
- 2 Weeks:  Meet with all medical personnel to go over test results, my care plan, what to expect, etc. 
- 1 Week:  Prepare for Transplant Day with daily chemotherapy.
                My donor receives Neupogen shots to stimulate stem cell production
                Day -1:  Donor's stem cells are collected by apheresis; stem cells shipped to  Northside Hospital.

Day Zero:  Transplant Day (also known as my "Re-birth day") 
                 I receive my donor's stem cells by transfusion.

When I get the official transplant date, you can be sure I will be filling my calendar with lots of "to do's" ~ mostly around getting Katrina ready for college, Alex and his college applications, scheduling bills, etc.

Also, I'm setting up a Caring Bridge page so we can keep anyone interested up on the latest in my big adventure.

I need a nap and a transfusion, so that's it for now.


Treewoman said...

Oh Marina....I am SO EXCITED for you!!! I just read your post to my Mom, who sends little "ohohohs" of happiness as well. This is such wonderful news! Please know I am sending you virtual hugs, and let me know if there's something I can do. =D


Unknown said...

On behalf of the Grand Rapids Be The Match team, YIPEE! We were so happy to work with your family here in Michigan and celebrate with you in hearing this good news.