Monday, October 12, 2009

Four Years and Counting

Tomorrow will be four years since Aren received a bone marrow transplant to save his life from a genetic condition he was born with called Severe Combined Immunodeficiency. Following is the blog entry that Rick posted on that day. Thank you to everyone who has been with us over the past few years to help us and especially to help Aren. We are forever grateful to the doctors, to his donor, George (you can read his story HERE) and our Savior who allowed Aren to stay with us.


"This day has been a long time in the making. It has been about ten months since we started actively pursuing it for Aren and nearly three years since we got the first signs of trouble. But it finally came. Aren has been pretty sick over the past couple of days, a result of many of the medications that have been preparing him for the transplant. It was really sad. He slept for about 18 hours straight between Tuesday and Wednesday, waking only long enough to throw up, complain that his head, tummy and legs hurt, go to the bathroom (maybe) and fall asleep again. It was awful, seeing him that sick, but it was what we expected would happen the moment that he started the chemo. We’re just thankful that it took this long to get this bad. It’s ironic, however, that it wasn’t the chemotherapy that was making him sick. It was actually a different drug whose purpose was not to kill off any bone marrow but to prevent some of the white blood cells from attacking the new bone marrow.

But today was the big day. At about 3:00 this afternoon, the nurse brought in what looked like a bag of blood for a transfusion and hooked it up to Aren’s central line. We told Aren that it was his new bone marrow, and he stopped playing Pokemon just long enough to look at it and exclaim, “Wow! That’s COOL!” The infusion began. It had taken longer for them to get the cells to us because there was a blood type difference between Aren and his donor. Therefore, the marrow had to be scrubbed of white blood cells and plasma, in order to keep it from killing off the rest of Aren’s blood before the new stem cells could have a chance to engraft. Since it wasn’t whole blood, there were some interesting differences in consistency in various places along the IV tube. In some places, it looked like regular blood, while in others it was nearly clear. The most striking were the places where the consistency and color were eerily similar to the Tropical Punch Kool-Aid and Orange juice mixture my mother used to make when I was a kid.

After a while, the nurse said, “Aren, Guess what! You’re all done with your transplant!”

Aren sounded truly surprised. “Really?”

“Yep.”

“How long did my bone marrow transplant take?”

“About 1 ½ hours”.

His transplant ended with the same sentence with which it began. “Wow, that’s cool.” And then he went back to his Pokemon."

13 comments:

Denise said...

:)

Emma said...

yeah Aren! we love you!

Lors said...

such a day of celebration! did you do anything fun? thanks for this post. Aren, you are awesome!

Karen said...

What a great day :)

Higleys said...

Good Day

My Name's Sarah said...

I love that picture of Aren. Yay for bone marrow transplants!

Cindy said...

I read about Father George. What a great story! I assume he knows who Aren is now and that Aren knows who he is. What a special day for many special people (especially Aren and George).

Deni said...

Congratulations on this amazing anniversary!!

May there be many more to come.

- Deni

Elizabeth said...

That's such a great story. Your family is truly an inspiration to me.

The Johnson Family said...

Mary Beth,
I'm Mike's wife and I just want to tell you how absolutely amazing you are. You have to be one of the strongest women that I know. I only know a fraction of what you guys have been through. I must say that it was much easier for me to go through it than watch my child or husband do it. I hope you guys celebrate this day like it is his birthday. When I look at your little boy, I just want to squeeze his little cheeks and give him a hug. What a strong and resilient little boy you have. You and your family has made me realize that I need to be grateful for everyday that I have. Thank you for being so strong. You all have made such an impact in my own life. Tell Aren congratulations. I hope that one day I can meet you and your wonderful family!
Love,
Meagan Johnson

Alison said...

I read the story of George the donor as well. The power of prayer, science and caring people is amazing. I'm so glad that this has worked out with such a happy ending.

Lucky Mama said...

Wow four years! :)

kellyclay said...

Wow,that's cool."