Today Nora went to the clinic to check her blood and once again, second week in a row… SHE DIDN’T NEED BLOOD OR PLATELETS!!! WOO HOO!! Her whites went down a bit, her reds went down a tiny bit, her neutrophils remained exactly the same, but her platelets tripled!
Her stitches from her central line in her chest have healed so we decided to try getting out and going to the beach. (The trip was Dr. approved.) She didn’t dig in the sand or use the public bathrooms, but she took a nap listening to the waves. She put on her waterproof band-aid and ran in the surf. She said it felt good to be normal. Of course we didn’t go near another soul for fear of a sneeze and she wore shoes the whole time, but all-in-all it was a great family day at the beach. The next day she got even more daring… we went to our friends Lorraine and Bruce’s place for a bbq. They have a pool and the kids had a great time just being kids. Another great day out with family and friends.
Sunday night Arik and Shawn went to a Duck’s game and Nora watched it online. She had a mini-meltdown when the realization set in that even though we can do more things as she gets better she still cannot go to a Ducks game or Church or to the library or to a playground. It was her second “Life’s not fair” freak out. (Considering I’ve had about 5 since she’s been diagnosed—goes to show that at age 6 she is already more mature than her mother.)
We are starting to wean her off of her steroids. Her ‘chubby chipmunk cheeks’ should be gone in a month. We thought that the steroids were causing her hair growth but it turns out the cyclosporine is the culprit. She is very self conscious about the unibrow and the goatee she has recently grown. I saw her trying to use stickers to pull out the hair. It will fall out when she stops the meds but that won’t be until after Christmas so if you see her… don’t mention the words “hairy”, “mustache”, “beard”, or “unibrow”. And if you are a woman with such issues be prepared that if she sees you, it will be pointed out to you.
Just a reminder, the MBPOA is holding a blood/platelet/marrow drive for Nora on July 26th from 2:30–8:30PM. The MBPOA is having a raffle to pay for the bone marrow swabs. There are some really cool prizes (kayaks, boating supplies, spa basket etc…) to be raffled off at the MBPOA Crabfest on August 28th. If you can’t make the blood drive please buy a $10 raffle ticket. Send a tax deductible check to the MBPOA “Friends of Nora Getchell” at PO Box 212 Mastic Beach NY 11951 call 631-399-6111 for more information.
Keep all the prayers coming.
Nora (who is deep and wise beyond her years) told us a few reasons why she is sick:
#1. God is gardening with her and making her garden more interesting by ripping out old flowers and planting new trees.
#2. She is saving the babies with every vial of blood she gives. (I don’t know who these babies are, but she believes she is donating blood to make them better.)
AND (my personal favorite)
#3. She got sick because people who never prayed before are now praying for her and that’s what God wants.
Thank you for all the food, gifts and donations. We love you all so much and feel so blessed to have each of you in our lives.