Thursday, November 2, 2006

I know it's been one month (thanks Brian for the subtle reminder today) since I've updated. I guess one could say "no news is good news" and for the most part, that's true.

For the entire month of October, we've been chasing Frankie's FK level (immune supression level). We have yet to figure out why it's not at the level it should be. For those of you who understand the counts, Frankie's level should be around 10. It has yet to get passed 7 this entire month.

Fortunately, his skin has been in check (the first indication of GvHD). But, he's also on an oral steroid twice a day to help with the GvHD, so his face looks a little plump. The doctor's want to be able to cut back on the steroid, but every time we do, his skin flares up. And with the low FK level, we're between a rock and a hard place.

On the up side, Frankie's been getting Speech, Occupational, Physical Therapies, and a Special Education teacher at the house. Until his immune system fully recovers, he cannot be around other children... and therefore, can't attend a Special Ed preschool at this time.

Ahhhh... the house. We have a pretty small home, which is fine. But, when you cut off one room due to some renovations, we've lost a lot of space. Originally, I just wanted to paint the rooms. As my brother-in-law says, there's never just a small project. What I thought would be a simple paint job turned into ripping out all of the trim around the windows for fear of lead paint on the moulding under peeling latex paint. Fun.

On top of this, the doctor's have advised me not to rip up any more moulding for Frankie's sake (obviously). Since we started the tearing out of the old wood, we put up a heavy plastic barrier so none of the dust goes into the rest of the house. I'm hoping that we'll be able to finish trimming out the windows this weekend, patch and paint during the week, to get the room back. Oh, and yeah, the room in question is Frankie's play room. So, you can imagine who's really missing this room the most.

Below, you'll find some new pictures to enjoy!!!

The picture of Frank and me is from our friend's wedding. Congratulations, Matt & Paula!!!

Saturday, November 18, 2006

It sucks. You'd think the transplant was the hardest thing to go through, but "recovery" seems to be worse. I guess in our heads we expected to be back to "normal" by now. Unfortunately, Frankie has had his ups and downs since January this year. Today is no exception...

Frankie hasn't really eaten or had anything to drink since Monday. We made three trips to clinic, one trip to the dentist, a CT scan, chest X-ray, and were finally admitted to Yale last night. Today, we found a dime-sized ulcer inside his mouth on the upper gum line between his teeth and cheek. We started morphine today for his pain management. Unfortunately, the swabbed sample of the ulcer has gotten "misplaced" in the tube system at Yale, so we still have no idea what he may have.

Tired?? Yeah. But, more tired of not knowing what is going on with Frankie, than from lack of sleep. Frustrated?? You have no idea.

Like I tell everyone who asks me, I have good days and I have bad days. Yesterday was a very, very bad day. But amidst the horribly long, emotionally draining, day (we got to clinic at 9am and were admitted around 5pm)... everyone was so incredibly wonderful to Frankie, Frank & myself. I have to extend thanks to Dr. Beardsley, Carolyn (Frankie's NP), Denise, Debbie, Karen & Corey (Frankie's nurses), Linda, Jeff (nurse anesthetist for the CT scan)), Tricia, Laurie and Jenny (nurses on 7W).

I can't neglect to thank mine and Frank's family, who have come to our sides whenever we need the support. When Frankie has a bad day, it affects our entire family. And we have one amazing family. We are truly blessed.

Okay... well, it's Frank's night with Frankie at the hospital (with no date set to come home), so I'm going to get some well-needed rest. I'll try to update on Monday night.

Thursday, November 23, 2006

What are we thankful for?? We are thankful for not being in Yale for Thanksgiving. Yes, we were discharged from the hospital. Frankie is doing 1000% better than Saturday. He started eating Monday afternoon. And, yesterday, he ate 3 pieces of pizza... definitely much more like himself.

So, right now we're enjoying our Thanksgiving breakfast -- waffles, strawberries, whipped cream, bacon and of course... coffee.

What am I thankful for?? I am thankful for my family. I am thankful for having the ability to care for my child. I am thankful for all of the doctors and nurses that have helped us along the way. I am thankful for the children and families we have met along this journey of transplant and recovery. I am thankful for the thousands of men and women who protect us daily, be it home or away.

But, most of all, I'm thankful for Frankie. I am thankful to know pure joy, pure happiness, through his eyes. I am thankful every day for his laughter, his smiles, hugs and kisses.

Happy Thanksgiving, everyone!

Monday, November 27, 2006

It is with great saddness that I write this. Our little friend, Benjy, lost his battle with Tay-Sachs this morning. For any of you who didn't get a chance to meet him or his parents, Elizabeth and Josh, you are missing out. Despite the effects Tay-Sachs has on the body, Benjy was fighting hard and was making incredible progress. I so enjoyed reading the updates on his blog. And, I must say, I have not met a more determined and committed set of parents than Benjy's. While caring for their beautiful baby boy, they were fighting their own battles against the doctors and insurance companies... and won. The entire family is such an incredible inspiration to me. I cannot express the saddness and the loss I feel right now.

Please visit Benjy's link to the right to read about him, his fight and the loving, supportive family that surrounded him. While he is at peace, he is missed beyond words.

God bless you, Benjy!

Wednesday, November 29, 2006

Today, Benjy was laid to rest. I was hoping to be able to go to the funeral, but unfortunately, mine and Frankie's schedule did not permit it. Please say a little prayer for this beautiful boy and his amazing family. Elizabeth and Josh... our prayers and thoughts are with you and your family.

I thought I'd be able to write something fun and at least uplifting, however, I just found out that another child has passed away. Olivia Medici passed away on November 12, 2006. Olivia was diagnosed with MPS III Type A, the same as Frankie. She was two years post transplant (Frankie is 1 1/2 years post transplant).

I had met Annalee, her mother, and Olivia once when we were on the 5200 floor. They were back in town for Olivia's six month post transplant visit. Please visit her website to see how beautiful this little girl was. Olivia's Wish

I have no idea why I never put her link over to the right, so I have added her now.

Please take the time to hug your children... enjoy every single moment you have. Some of us out here cannot tell you enough that you just never know when that hug, that kiss, that look, smile or laugh, will be the last. It frightens me, and I'm no longer afraid to say that.

I wanted to say a huge THANK YOU to Alison. Thank you for chatting with me the other night. I'm sure I talked your ear off. I needed it, more than you know.