Two big things happened yesterday. I had my first radiation treatment and I found out my sister is not a close enough stem cell match.
The radiation treatment went very smoothly. We had simulated it about five times before, so I was pretty used to the drill. In fact, the simulations took much longer than the real thing. The most challenging part of the real treatment is the tungsten eye shield. We never simulated that before, so inserting a metal shield under my lower and upper eyelid has been a new experience. I don’t recommend it, but just like everything else in this situation you just have to go with it. Today I counted the actual time the radiation machine is clicking and shooting at my face. It is a whopping 22 seconds! That must be some powerful stuff. The prep time is what accounts for most of the appointment.
My sister and I both received phone calls yesterday letting us know that the HLA testing was not a good match. The woman who called is getting a doctor’s order to start looking into the stem cell database for a match. She explained the genetics of stem cell matching. At this point, the best match will be an unrelated donor that matches 9 out of 10 genetic markers. Because my markers are half from my mom and half from my dad, testing my parents and our children would not provide the best match. Although counter-intuitive, going into the general population will provide me with a better match. There are special circumstances where they can use partial matches or cord blood, but at this point (per this woman) it will be best to go with an unrelated donor.
Thank you to the friends and family who have offered to be tested. If you are willing to “pay it forward” for me, bethematch.org can provide you with information on being tested for the database and helping people like me who are looking for a donor.
As you know, we have to find some moments of humor as we walk through all of this. I decided that Jonathan really needed to try on my wig, and why not my hat too? It got us laughing pretty hard. I’m pretty sure that God has given us the gift of humor to make times like this bearable.
April,
Thinking of you and Jonathan and your family back in Nashville. Praying the radiation is working and is not too difficult to bear. Hope your strength is holding up also. In OUR prayers, as well as many others.
Love,Becky & Jay
We hope you are having good success with your radiation treatment. Maybe you will have a hard time but we are sure you will do well. We are thinking of you and your family and we wish you all to have strength and courage during this difficult time.
We love you,
Stig and Ewa
April,
I couldn’t stop laughing at the picture, and can only imagine having a front row seat for it.
Your continued perseverance is staggering. We are praying and sending love your way for a successful stem cell match and radiation treatment.
Love, Robin, Damani, Zaylan, Covin, & Carmela
Dear April,
We continue to send a lot of love and virtual hugs your way, and also to your entire family and support system that you have to help you.
I wish we lived closer so that we could do more.
Much Love to you,
Martha, Dave, Carlie,
Chelsea, Augie, and Aunt Joanne
xoxoxo!
So sad to hear that your sister was not a match for stem cells, but there are so many ways to get this done. I’m sure that God has another source if you need stem cells. Loved seeing your verses and the humor you are able to maintain! God bless you April, and your loving parents too! Jon and Rachel
I can’t decide if Jonathan looks like a comedian or a serial killer. Ha! Praying for a stem cell match and for everything to continue smoothly with radiation. Thinking of you both many times a day!
The wig and hat really goes well with the stubby beard. Looking good, Jon. Praying for effective radiation and stem cell match. So glad you can enjoy laughing together.
Good Morning April and Jonathan,
I do really appreciate the humor and the Proverb – humor and a sweet spirit do lighten the load and strengthen the resolve. The picture of Jonathan drew a “who is that?” from me and then I realized and laughed.
You two are an inspiration – a model of how to handle the potholes in the road.
We are here always. Much love, Papa