Sunday, June 4, 2006 - Day + 339

Okay, before I write anything, I have a quick announcement. As of May 31, 2006, the Wachovia account for Frankie's fundraising (cash) monies has been closed. Any further contributions to his fundraising account must be sent directly to COTA. However, please note that it's important to put "For Frankie D" in the memo field now, more than ever, otherwise the money gets deposited to COTA's general fund. The reason for the Wachovia bank account closure is tax-related for COTA. They can only keep the account open one year. We will still have some fundraising events for Frankie, but they will be on an annual basis going forward, if I'm not completely mistaken. Again, MANY MANY thanks to everyone who has continued to support Frankie throughout his journey.

And, now for the update...

Well, it's been a few weekends, and we've been hospitalization-free, thank goodness! But, we still haven't really had a chance to give Frankie the 3rd Birthday Party he deserves. Since his immune system took such a hit just a few weeks ago, we've been very gun shy inviting anyone over. We're hoping that within the next few weeks, things will be back to "normal" and we can have a little family celebration outside.

So, some recapping over the past few days... Frankie is doing much better. We still have this ongoing issue with his skin, and no one seems to know what these bumps are. They look like pimples to me, but they're red and seem to itch. There aren't many on his body, but they pop up here and there, so there is no real pattern to go by, just yet. So, for the past week and a half, I've been logging all food, medications, diapers trying to find anything. So far, I'm coming up with the big ol' goose egg.

Our first hospital weekend-free weekend was Memorial weekend. And, since it was freaking hot out, we also avoided the outdoors. I think we may have put in our air conditioners that weekend... pretty exciting stuff. But, not having to go to the Pediatric Emergency Room and then the hospital was pretty nice, too.

That following Tuesday, I was able to go to breakfast with some very dear friends that I haven't seen in so long. I only wish I could have spent more time with them. Linda had come up from Florida with her husband Ed (who went golfing, so I hope he had a fabulous time while we ate). Only Linda knew I was going to show up, so I think it was a nice surprise for everyone. It was Linda, Mindy, Joan, Catherine and I, sitting at a round table in a diner, catching up on what had to have been at least four years!! Although I could only stay for a little bit, it was really great to get out and see all of them. Thanks to all of you lovely ladies!!! I owe each of you a breakfast! :)

The rest of the week, and now the weekend, has flown by. I guess that's a good thing, since it's been pretty uneventful. It's Sunday night, and we just put Frankie to bed. So, Frank and I are sitting in our TV room relaxing. Okay, well, I'm writing this and will probably either knit or stay on my computer and Frank's studying.

I wish I had more to share with all of you, but maybe it's good that I don't, at least in regard to Frankie's health. I do want to extend huge "THANK YOU"s to everyone who sent us emails and called while we were having those bad couple of weeks. Thank you for your thoughts, your prayers, your well wishes, for Frankie, and for all of the children who are in need of healing. There are so many more children than the few I have listed here.

This week, I received a call from Dr. Szabolcs at Duke (Frankie's transplant doctor) of another family whose child may have an MPS disorder. They are just waiting for the biopsy results, from what I've been told. To that family, if you're reading this page, I'm so sorry we've missed your calls. I don't have your number, but if you call me tomorrow, I should be around. Frankie naps around 10am, so that's usually a safe time to call.

And, then there's Drew, my friend Brendan's nephew. Drew lives in California and has been diagnosed with SMA Type 1. Brendan participated in a walk recently and was able to raise his goal amount and then some. Please visit this site, if only to check out this cutie pie! Drew turns 1 year old this month. Drew's Walk Page.

Our next door neighbors, John and Tracy, have a young relative that is, thankfully, in remission, from ALL (Acute Lymphoblastic Leukemia). John is raising money "Racing for a Cure". They have been incredible neighbors and friends throughout our journey. While we were away in North Carolina, they watched after our house, mowed our lawn, and supported us through local fundraising events.

As you can tell, we are all affected by someone in our lives; someone who shows you how far out of whack your priorities were and what is really important in life. Someone wrote me recently and it was the nicest email I had received in a while. She mentioned my "happy spirit" and I couldn't help but smile. Despite Frankie's diagnosis, Frank and I remain positive and upbeat. It's what keeps us sane, it's what keeps us holding strong together, but more importantly, it's how we have always been, pre-, during and post-transplant. Frank and I chose to travel this road together, with laughter, love and respect. He is my best friend, and I wouldn't have it any other way. Plus, Frankie's a pretty damn cool 3 year old boy. He makes the job of "parent" easy and rewarding.

Wednesday, June 14, 2006 - Day + 349

Today was clinic day. And, while we weren't really expecting to do any infusions today, I went back in my calendar and realized that it would be one month today that Frankie received his IV infusion of Pentamadine. So, what would have been a rather quick clinic visit turned into a couple of hours (3 1/2 to be exact).

When Frankie gets Pentamadine, he has to be premedicated with Benadryl. In the past, he has gotten cold-like symptoms and hives. So, we thought we were prepared... only this time, his reaction was slightly different. He vomited twice. Thankfully, his doctor was sitting right there when it happened, so she knew that nothing spurred it other than the medication. Another plus... I remembered a second set of clothes!

The nurses at the clinic were wonderful. They helped clean up the mess and helped me clean up Frankie by getting tons of towels, a basin of warm water; and, while I attended to him, Denise and Debbie cleaned the floor and his stroller. Thanks, ladies!!! You're awesome!

Despite that, and the "lovely" rash that has come back on his chest and face, Frankie's doing well. His spirits continue to soar, and if I'm not mistaken, he's got a little crush on his Speech Therapist! He's gotten taller, and thinned out a bit which makes him look more like a young man than the baby I'm so used to. He's extremely mobile and loves to climb on everything. And, with the warmer weather now here, his hair has even lightened up... or maybe that's the haircut.

One of our friends has asked that we put some more updated photos on the web. I will do this, however, because I have this vanity issue, I'm going to wait until the rash has gone from his face. So, it may be a few weeks before you'll see new pictures up. Please forgive me, but I want people to see my beautiful boy at his absolute best.

Please continue to send positive vibes, thoughts, prayers to our extended family to the right, and then some. Ashley is still recovering from her liver transplant and has hit a few bumps in the road.

Love, hugs & prayers,
Cynthia

Oh, and here's the photo I took of Frankie for his 3rd Birthday:

Friday, June 23, 2006 - Day + 358

Well, today we're just hanging out, painting (washable paints, thank goodness). The weather this weekend is supposed to be pretty rainy. So much for my golf lesson on Sunday.

At Frankie's clinic visit Wednesday, he had his Daclusimab IV and an impromptu visit from the dermatologist. His rash hasn't really gotten any better. Rather, when one part of his body clears up, another flares. And, it appears to be two different types of rash: red lacey rash vs. red bumpy rash. These skin issues are stumping everyone since all of his levels are coming back relatively normal.

That being said, his FK level from his Wednesday draw was high (18) so we're dropping that dose. His neutrophil count dropped, with a rise in his monocytes. I know I hardly ever update you on chemistries or counts, partly because to most people, it doesn't really mean much; but, partly because I don't always get the results. Why am I doing it now? Well, with him almost one-year out from transplant, I want to let people know that we're still not exhaling. While Frankie is doing so well--happy, laughing, and playing like a normal kid--we still watch him like a hawk for any changes. Right now, we're watching him for coughing. With his runny/stuffy nose, an added cough could indicate an infection in his lungs. He is still very susceptible to infection.

On a completely different note: He broke the VCR this morning. He had jelly on his lips, kissed an exposed VCR tape, then put it in the VCR. Need I say more??

Accomplishments of late: He walked down the stairs without my help this morning. He used the hand rail and walked down sideways, but even still, it's great that he's getting the confidence to do it by himself. His comprehension skills are getting better during his Speech Therapy sessions. And, he does appear to know what I'm asking him during the day, even though he can't respond beyond "yes" in sign language or "no" by voice. I have to keep my questions very simplistic, but we manage.

Thursday, June 29, 2006 - Day + 364

What's the significance of today, do you think??!! Tomorrow will be Frankie's second first birthday! Okay, for those of you who aren't privvy to the Duke way of transplant life, or any transplant life, for that matter... the anniversary of the transplant is considered a birthday for the child.

Tomorrow will mark one year since his actual transplant. He had already been on the unit receiving chemotherapy for nine days prior, but the actual transplant anniversary is tomorrow... June 30!

I have a necklace that they give the mom's when they're on the unit. It's Frankie's thumbprint with his name and transplant date engraved on the back. The pendant is sterling silver, and I wear it every day. Although, he did rip it off the other day, so I had to get a sturdier necklace to put it on. It's really cool, though. If I want another one, the jewler down in North Carolina keeps the thumbprint on file, and all I have to do is order it.

Right now, Frankie is downing waffles and yogurt. Some days, his eating is fabulous. Other days I worry if I can even get 100 calories in him. I try not to freak out too much, because I don't want meal time to be a stressful situation for either of us. And, at 16.1 kgs, he's really not wasting away too much.

Earlier this week, I met with the Pediatric surgeon regarding Frankie's lumen. He's been more and more attracted to the cable coming from his chest and his skin below the dressing has gotten irritated so much that we've decided to go with a port. The reason I've decided to have the port placed (instead of going without an access point altogether) is due to the trouble we always have finding a vein on him for peripheral blood draws. And, even when they do find a vein, the blood doesn't flow and it takes forever just to get one vial.

The port is under the skin, and requires a professional to access it for blood and maintenance. But, it will allow me to give Frankie a bath in a bath tub since he would be able to get wet as nothing his protruding out of his skin. And, once we've been given the "OK" he may be able to go in my dad's pool. We may be able to salvage some of this summer yet!

We're headed to Duke for Frankie's 1st year studies in mid-August. I don't know if I've mentioned that before, but due to scheduling issues, we weren't able to set up anything earlier. So, unfortunately, we'll miss all of our 5200 floor-mates from last summer's "vacation"!!

The reality that I may have to go back to work soon is slowly dawning on me. I don't even know where or what I will do. But, we first need the OK for Frankie to be around his cousins under any circumstances (healthy or sniffly). I wish I could stay home with him until he was school age, but that's not going to be feasible. I know other mothers had to go back to work already. I know how lucky I've been to stay home with Frankie this long. I just know I'm going to have a really hard time with this.

FRIDAY, JUNE 30, 2006 - DAY + 365

HAPPY 1st TRANSPLANT BIRTHDAY, FRANKIE!!!

We love you SOOOOOO much!