Whirlwind Days!

It's been a very busy few weeks here in our house. First, we want to wish everyone a Happy New Year (a month late)! We're excited about all the things to come this year!

Happy New Years! Jada and Daddy waiting for midnight!


Roughly 6+ months pregnant here with my favorite accessory - Jada's face


Loose tooth! Loose tooth! Joli discovered she had a loose tooth on Saturday, January 10th or so. She has been wiggling it all week!

We went and had a day at the doctor's today. It was exhausting, but we're glad we got it all done in one day. Joli met up with her friend Julia, also an Rb survivor, and that helped to pass the time.

Joli at the Jahrlings for her eye polishing. She goes 1x a year. The doctor told us that we may want to explore redoing her implant in a few years since he feels her prosthesis points "down" a little bit. It doesn't look like much to us, but to an expert and perfectionist, he would like to see it adjusted after she is done growing. Joli dropped off a few of the coloring books Teetah Grace wrote and they loved them!


After the Jahrlings, we had an hour or so to pass. So, we went to get some hot chocolate at our favorite little place (aka the Hospital lobby), and went upstairs to where Joli used to receive treatment. She didn't really remember the place until the elevator opened and she saw all the cool murals and toys. We were so surprised that Joli's drawing from her last day of chemo was still up there! They still kept Joli's drawing up in the playroom -- even 3 years later!


After the playroom, we met up with Julia and went to our appointment with Dr. Mukai. Joli was pretty mad about getting her drops this time. I think we may go back to doing the slow release ones at home. But, we did the fast action ones at the office (which, I'm told has a weird sensation feeling). It took her a while to calm down again, but once she did, she was fine. Here she is chilling out waiting for Dr. Mukai.

It's never really quite easy when we go to the doctor's office. We were told that Joli is doing okay and that we'll likely stick to one year visits, until we started talking about her genetics results. We're still waiting to hear from the lab about her Rb results, but the doctor did want to talk about her VHL results. We sent her blood to get retested (which we'll hear back in February or so). Dr. M wants us to have it done again in Boston since the VHL gene was isolated at Dana Farber and that one of the best treatment places is at MGH. I also thought that VHL doesn't manifest until adulthood, but Dr. M says that retinal tumors can develop as early as late teens (oh great). So, we're just now going to wait on the results of the re-test. The good news is that she is getting checked every single year for tumors, anyways. So, if something manifested, we'd catch it. But, we'll cross that bridge, I guess, when we get to it.

For Jada, I asked whether or not he wanted to keep screening her. She hasn't been seen since 18 months of age. He said we'd wait to hear the genetics results.

For baby#3, we, too, should wait for genetics, but he at least wants to see the new baby after delivery. So, at 3 weeks, we'll bring Baby 3 in for an EUA. Oh, joy.

I always believe that with darkness comes light....

When we got home, Joli decided to wiggle the loose tooth and.....

See the hole! Loose tooth is now incoming tooth! Hurray for Joli!

She came running out of the bathroom saying that she had wiggled the tooth and it came loose (it's about time!). Now, there is a lovely hole at the bottom of her mouth. She's adorable!

Jada holding the prized loose tooth!


All in all, it's the story of our lives -- wait, hope, wait, hope, dishes, coffee, get dressed, wait, pay bills, watch tv, wait, hope, go to work, eat, sleep. This whole cancer/medical journey is a part of our lives. It's as much of our lives as brushing our teeth. It's our "normal."

So, we'll keep you all updated! Thanks for reading!