Wednesday, April 5, 2006 - Day + 279
Update on Frankie's rash(es). Well, we stopped the Bactrim on March 20th and resumed the Pentamadine infusion. Since then, the really bad red, bumpy rash subsided. However, since then, the original rash has decided to get increasingly worse... it's even worse today than it was last night after Frankie's bath.

On Monday, we went to the dermatologist. He was hesitant to call it a GvH rash, and leaned more toward it being eczema (something I have, too, so it's possible). But, in order to be absolutely positive, we're going back to the dermatologist this afternoon for Frankie to get a skin biopsy done. This should be interesting.

The doctor gave me some anesthetic to numb an area of my choosing a couple of hours before going to the appointment. There, he will have to be held down by several people while the doctor cuts a small piece of skin off of him. He had this done once before... to be diagnosed with MPS III Type A. I wasn't in the room that time, but I'll have to be today. I'm not looking forward to it, and thankfully, Frankie has no idea what's coming.

I'm not sure how long it takes for the skin sample to be analyzed. I don't know if we'll know today or tomorrow or even next week if it's a crazy form of GvH or just winter eczema Thankfully, it doesn't appear to bother him, other than just being dry and itchy.

As always, thank you so much for your love, prayers & support. Please continue to pray for all of the little ones and not-so-little ones that are in need of healing. Please continue to pray for the sweet children that have left this earth, and for their families as they are now the ones in need of healing.

We love and miss all of you!

Thursday, April 13, 2006 - Day + 287
Yesterday, Frankie and I went to clinic for his two infusions (Daclusimab and Cytogam). All in all, the visit was uneventful. His doctor and NP are very pleased with his progress.

We were scheduled for a 2:30 appointment at the dermatologist, but since we were finished at clinic early, the dermatologist let us come early so I didn't have to drive back down to New Haven later. There, they were able to tell us that the results came back from his biopsy and that it did not show signs of GvHD. But, it probably is some sort of eczema.

Since last Wednesday, I've been much more diligent at applying his creams and Aquaphor ointment. The rash has all but gone away. There are a few resilient spots, but neither the dermatologist nor Frankie's doctor are concerned with those. However, when I was applying his steroid creams (circular motion and/or back and forth), it caused the cream to go up and into the hair folicle, creating a postule. I know this sounds gross to most, but for other families who have to apply these creams, apply in one motion, in the direction of hair growth, to avoid these little pimples.

This weekend, we're headed back down to Durham, North Carolina. Frankie will be having his 9-month post-transplant evaluations. I'm excited to go back down and see everyone, and finally meet some others (Cooper!). We're going to be in the same complex, but a different apartment.

Frankie's schedule is set up okay this time around. We have a lot of appointments on Monday, but then it thins out across the week. Tuesday is his full developmental evaluation at Chapel Hill.

I hope this update finds all of you well! Thank you for your continued support of Frankie and all of the children that have come across our path in this crazy journey of ours.

Sunday, April 23, 2006 - Day + 297
We were in Durham last week for Frankie's 9 month post-transplant evaluations. Please find below the rundown.

We arrived here on Easter Sunday... yes, we traveled on a holiday weekend! What was I thinking??!! One hour into our drive, Frankie got sick and vomited all over the back seat. We were barely in New York before we had to turn off of the highway, find a store to purchase cleaning supplies, towels, etc... Over an hour later, we were back on the road. Aside from the crappy traffic, the rest of the drive was uneventful.

Monday, we had four appointments, starting at 9:30am. Before our first CHC appointment, we were able to visit quickly with Ashley. She called me on my cell as we were getting on the elevator... such timing! And, fortunately, things went very smooth for all appointments... even the 2nd floor CHC!! My name must be flagged or something, because we were early to our appointment, and were seen almost immediately! We were back at the apartment by 2pm, just in time for nap time!

Tuesday was Frankie's "full day" developmental evaluation at the CDL in Chapel Hill. The evaluations began around 8:30 and we were home by 1:00pm... again, just in time for someone's nap! I popped over to see Cooper this afternoon. Cooper was in the middle of a Speech Therapy session so we'll have to visit another time.

I also got to sit and chat with Elizabeth & Josh, and see Benjy for a few minutes, too. Frank waited for me with Frankie in the car, as we were on the way to the grocery store and had to be back for Frankie's Best Buddie, Kate. Kate came over to visit with us for dinner and dessert. Right before she showed up, however, Frankie had a little vomit spell... combination Ovaltine and Soy chips... don't ask.

Wednesday, Frankie was NPO for his MRI. We checked in on the 4th floor to have vitals taken and blood drawn for his battery of tests. We got to see more nurses, and met another MPS child, Christopher. Christopher is an MPS II child (Hunter's), and absolutely adorable.

The MRI went well (11:00am) and even four hours after the sedation, he was still struggling to wake up. The nurse had to give him his full dose of Nembutal (125ml) to keep him sedated throughout the MRI... so, it ended up taking until the next morning for it to wear off. And, while waiting for the sedation to wear off, we hung out at the day clinic to have Frankie's doctor, Dr. Szabolcs and his Nurse Practitioner, Jerelyn, review his lab results with us and look Frankie over.

It was then we realized that Frankie in deed had/has GvHD of the skin and most likely, the gut. It's possible that he's working out the gut GvHD on his own, but it does set back his recovery. With this news, we understood that he would definitely not be weaned off of his immune suppressant as originally planned. He needs this medication so his original cells do not continue to fight his donor cells (GvHD).

This news was a bit of a blow to us. But, with proper creams, we should get the skin rash under control. If the creams don't work, we'll have to add a steroid medication to clear the GvHD. My concern is the GvHD of the gut. This is not good news, at all. And could have drastic consequences if not taken under control and defeated. If it becomes chronic, my hair will turn more gray than it already has.

We have come so far without these horrible letters - G V H D - to pass the lips of any of our doctors.

On Thursday, Frankie had the EEG and Audiology exam. He did awesome at the EEG and was pretty much bored with the routine of the audiology exam. He sort of knew what to expect (sounds and a clapping monkey), so he'd turn before hearing anything, anticipating the noisy toy. So, they had to test his hearing with another device... the only catch, he had to be perfectly quiet. Yeah, right, try keeping this kid quiet. I was positive that he would fail this one. Fortunately, they were able to get enough data to tell us that his hearing is still "adequate for communication."

Friday held our last doctor's appointment (Endocrinology) and our exit meeting with Dr. Szabolcs and Jerelyn. Endocrine was uneventful, other than dropping down his Cortef dosage.

During the exit meeting, Dr. S and Jerelyn go through all of his test results and any of the additional lab work that wasn't available on Wednesday. And, basically, Frankie's where they expected him to be, other than the GvHD, and he dropped a bit in his developmental evaluation. The chimerism and the GAGS tests were not available at this time. Those two tests take a few weeks to return. And, in preliminary tests, his immune system is still very low, most likely a result of the GvHD.

I apologize at this writing if I seem a bit scattered. The news about the GvHD hit me hard and I'm just not feeling my chipper self. But, I will say this, we were so happy to visit 5200, see Kate, Benjy, Elizabeth, Josh, and meet Cooper and Shannon (sorry Pete, we just kept missing each other!) We got to see Chris, Melody and a very pregnant Jenn! ha ha ha, I had to get that one in. And, I had the fortune of speaking with another member of Frankie's team, Shawn (we'll see you next time!)

Our drive home was horrible, but just because of NJ traffic, gas prices, and the fact that I left my two favorite pillows in our Durham apartment. We arrived back home in Connecticut on Saturday afternoon... Frank's birthday. He is officially thirty-something! Unfortunately, I'll always be older than he... as I am reminded. :) Happy birthday, my love!