Hello! For those of you patient enough for my latest update, I will first apologize for such a long delay between writings. Anything I could write as to why would sound like an excuse, but truly we have been busy... in a good way.

Frankie has been doing very well lately. Yes, he's had some colds, but his health is generally okay. For the past few months we've only needed to go to clinic monthly (instead of the every two week visits we've had for the past two years).

Frankie has also had some hearing tests done, as there is concern that he has mild to moderate hearing loss. His teachers don't really notice the loss, so we're still not 100% sold on the latest results. For the most part, his hearing continues to be "adequate for communication."

Frankie is scheduled to have his port removed on Tuesday! This is a HUGE step for all of us. He hasn't received IV medications in a few months so the need for the port (aside from our crazy visits to the ED and/or HemOnc floor) isn't really there anymore.

As we are in the cold/flu season, any fever he gets, regardless of the cause, has to be treated as an infection in the port. What that means is we immediately go to the ED, get him accessed and start antibiotics--just in case--when in all probability, all he needed was a fever reducer. What it comes down to is this: if we keep the port in and he gets a fever, then it's at least a two-day stay inpatient at Yale. So, by removing the port, there is less of a chance for us to be in the ED. We can treat a cold like a cold, a fever like a fever... ah... to be normal again???!!

So, that's it! Frankie is still enjoying school--TREMENDOUSLY. It's so great to see him in a "normal" setting. We have a parent-teacher conference this week. It should be interesting. :)

I will make a better effort to update the site more timely! I'll also look through some of our more recent photos (I think I have a Halloween one) and update that page soon. I'm working now, in case some of you didn't know, so what little time I had before has been depleted just that much more. But, like I said in the beginning of the update... busy... in a good way.

Hugs and Love!
Cyn aka CJ

Well, hello there! Yes, it's been a few weeks. And, I'd love to say that I'm writing with no new news... but, alas the year has ended with a slight bump in the road.

Health Update:
Frankie had surgery to have his port removed on December 16th. He removed his steri-strips a wee-bit prematurely. Within a day, half of the incision opened up. Frank and I brought Frankie back to see his surgeon. Since the incision wasn't showing any inflammation, oozing, smell, etc... she wasn't overly concerned. While the opening up of an incision isn't normal, it's not uncommon either.

So, a few more days passed... the bandage we were using had too strong of an adhesive, so his skin was getting irritated. We weren't truly able to determine if the redness around the wound was from his reaction to the glue or a brewing infection.

Christmas came and went without too much issue with the incision... until last night. After his bath, I pushed on the skin around the wound only to have fluid pour out. And, yet, he still seemed to be "acting" perfectly. He had no fever, wasn't listless, there wasn't a smell to the ooze (apparently bacteria can give off a nasty smelling gas)...

So, I called the doctor today (yes, I know to some of you I probably should have called last night, but truly, aside from the ooze, there was no other issue -- and clinic is closed for the holidays). After speaking with the doctor, we decided to bring Frankie into the Emergency Room to have him looked at, just in case.

It's always an experience... the trip to the ER. When you get "new" nurses/doctors, the question "So, what's his medical history?" just causes my eyes to roll automatically. I don't really mean anything by it, but honestly, how much can they really write in that 2" box?? Then, the next question... "are his immunizations up to date?"... oh, yeah, and my favorite of all... "is he on any medications?"

All kidding (and bitching) aside... the trip wasn't all that bad. Apparently there's a difference between ooze that is indicative of an infection and ooze that has just accumulated in a hole where a port used to be. We're all going on the basis that the ooze we saw last night was the latter.

A side note on our visit:
Our nurse was amazing. She was able to put an IV in Frankie's arm within a few minutes and one go. She was careful to find a good vein, and three of us held him still while she stuck him. To give you an idea, during his port surgery just a few weeks ago, he came out of it all bruised up because, even under anesthesia, they--anesthesiologists--couldn't find a good IV vein. I counted both feet and hands, with a couple of attempts on each.

Pre-Christmas:
My mother turned 70 this past December 7th. She and my dad were in England celebrating with friends. In celebration of her birthday, she held a party, but in lieu of gifts to her, she hoped for donations to Frankie's fund. And, what she (and we) found was that people can be unbelievably generous even when they have barely anything to give. We are so incredibly thankful to everyone who participated in the party. My mom's cousin, John, helped by putting together some photos and a write-up so the guests could get an idea of Frankie's journey. Thanks, John! THANK YOU to everyone who helped or attended the festivities!!!

Christmas:
Frank, Frankie and I had a great Christmas. We were able to go to two parties, have Christmas breakfast at home with Frank's side of the family and then Christmas night with mine. And, honestly, for a kid who can get uncomfortable outside of his normal surroundings, Frankie did awesome everywhere. He loved seeing people, even people he barely knows. He hugged and smooched on the girls... such a lady's man!

And, for those of you, for whom I do not have your mailing address, please know that we wish you all Happy Holidays and a very Happy and Healthy New Year!