Daley Ponderings

On Sunday, we went to the Franklin Park Zoo. This event was hosted by the Jimmy Fund clinic for its patients. It was sobering how many families were there, and it reminded me how many different types of childhood cancer there are. We had a fun time, though . There was a bubble lady, face painters, free food and swag, and of course animals. There was a special event for stem cell transplant patients. It was surreal seeing some of her nurses again, one of the doctors, and other patients. There was one boy whom we recognized from the transplant floor. There was a girl there who was still on feedings, and I saw my other kids look at each other with knowing when her pump beeped an error. Grace said, "Look, Mom! Like me, a long time ago." Hope was overwhelmed with excitement about the giraffe that was nearby!

On Wednesday, both Grace and Faith had appointments in Boston. Faith to check out possible influences of the JAK3 mutation. Grace for her annual Boston checkup.

They both got a lot of testing on their blood. Dr. Prockop was happy with Grace's appearance.

But on Thursday she emailed because Grace has hypothyroidism. She made me laugh because of the way she phrased that we didn't need to go to the ER emergently. Apparently, with numbers like Grace's, that would be the protocol, but since she had just seen her, she didn't think it necessary.

So Grace will go on thyroid medicine today and is supposed to be seeing a Dartmouth endocrinologist next week. We will get more answers then, but it appears that this is related to her NF1 medicine.

And there are other tests that don't have results until next week.

So please keep us all in your prayers as we navigate this new complication.

And here's a photo of Grace looking cool at her brother's soccer game.

Well, I didn't manage to post this yesterday when the day was a nice round, even number, so I get to post it today when it's a prime number!

This has been a full summer for us.

Noah was home.

Grace got to ride at Summerfest just like all the other healthy children! She had such a blast!

Grace was so excited to be able to go to the Maggie P. She has been looking forward to swimming at the Maggie P ever since last year when she couldn't swim because of her central line. She talked about it every month at least for the whole year, "When I go to the Maggie P, I'm going to go swimming!"

At playgrounds while Nathaniel was at Ninja Camp:

She loves hugging bananas and asks me to get a picture every time we buy some!

Smoothie mustache:

Being a Viking at History Alive:

Grace has been doing very well. One side effect we have now noticed from her koselugo is that her hair is thinning out. I'm very thankful that she does not have the more serious side effects, but I am also sad to see her beautiful wavy brown hair starting to come out again.  (No, I do not know the future prospects for that and I keep forgetting to write to the NF1 doctor about it.)

Grace and Faith have appointments in Boston this month, and Grace has another hearing check in October.