Thursday, August 10, 2006

I could write a thousand reasons why I haven't updated in two weeks, but they would merely be excuses.

Let's see... what's happened since my last update?? Oh yeah, one of the incisions from the port surgery became infected. Luckily, I caught it before it was more than just a superficial infection of the wound. The wound had opened up about 1/4 of an inch. I immediately put antibiotic ointment and a bandaid on the opening. Seconds after that I was on the phone with Frankie's NP and the surgery team. Based on my description of the opening, they were okay with what I did and said to continue changing the bandaid and putting the ointment on it until our scheduled visit (two days later, last Thursday, for those of you keeping track).

At the visit last Thursday, Frankie's doctor, Dr. Beardsley, put him on an oral antibiotic, just in case. The surgery team also saw him and checked out the incision to make sure it didn't need anything more than the ointment/bandaid fix I'd been doing for a few days. They were okay with me continuing my treatment.

A couple of days ago, roughly day 4 of the antibiotic, Frankie started coming down with some really bad diaper rash... an unfortunate consequence of Cephlexin. However, the same type of rough, scaly rash started to appear on his face, too. His levels have been steadily dropping over the past month as well. So, while we were at clinic today for a surgery update visit, I had Dr. Beardsley look at his skin. As a result, we have to make another trip to clinic tomorrow to get blood drawn. Now, here's where having the lumen instead of the port is so much more convenient (for me). Oh well. Hopefully, we won't be there long.

Now, some of you may ask... why not get the blood drawn right then?? Ah... good question. The doctors need a good read of one of his levels, his FK level. And, it has to be in a trough, meaning, the blood has to be drawn right before the next dose is given, in order to see what his true FK level is. Had we drawn the blood when I was there today, it would have been inaccurate as I had just given him his dose at 8am and we were there at 1pm.... only a 5 hour span, and that's too early for an accurate FK level.

And now you may as, what is the FK level?? It measures the level of immune supression. The doctors like to see it no lower than an 8 (Yale) or 10 (Duke)... Frankie's was 6 last week. When his FK level is low, GvHD will be more apparent, thus the possible reason for the skin rash (double hit by the antibiotic, too).

Okay... so we'll be there tomorrow and then on Saturday we head to Duke for Frankie's one-year evaluations!! Our schedule next week should be okay. We were able to get an early (9am) MRI scheduled instead of our normal noon-ish time.

Schedule as follows:
Monday - Dr. Escolar developmental evaluation
Tuesday - Blood draw, MRI, EEG, Orthopedic appointment
Wednesday - Clinic
Thursday - Audiology Exam, Pulmonary Function test, Echocardiogram, Chest X-Ray
Friday - Endocrinology Appointment
Following Monday - Meet with Dr. Szabolcs and Jerelyn to discuss results of all tests

Wish us luck! We're hoping to get better news about Frankie's immune system. However, I'm wondering how the recent antibiotic and low FK levels will affect him...

Saturday, August 19, 2006

Hello, All... a few things I wanted to type up really quick. I have limited access to the internet, so my update right now will be pretty short. When I get home, I'll update with more information about Frankie's annual visit to Duke. Rest assured, things went very well this time around. However, we don't really have the results of all of his evaluations until we have the exit meeting. That meeting is scheduled for Monday, August 21.

The first thing I wanted to say was CONGRATULATIONS!! to Tina and Jon. Tina is Frank's cousin. They are getting married today. We were so upset that we wouldn't be able to make it to their wedding as I'm sure it was going to be a blast. And, frankly, I could use a nice night out with Frank... great food, great people and dancing!

Second, like I wrote in the first paragraph, Frankie's evaluations have been going very well. He has impressed us the most with his patience and "go with the flow" personailty. He has behaved wonderfully under these crazy circumstances. We're so very proud of him.

Frankie's skin did flare up this trip down. Jerelyn wrote some more prescriptions for cream and I've been lathering him up every day, twice a day. He's also on Orapred to help with the rashes, but the day after we started that med, his skin went nuts. So, I don't know what's going on there, but we'll talk with Jerelyn and Dr. Szabolcs on Monday.

Lastly, I would be so grateful if you would read about Ashley and her rocky transplant journey, and help out if you can. She is truly an amazing young lady who has been through more than her fair share of bumps along the transplant road. Had it just been the transplant, I really feel like she and her family could have handled things, however, if you've read her story, you may know that since her transplant, it's been anything but downhill from there...

After Ashley's transplant, she was still suffering from nausea and headaches, so much so, that any drug the doctors prescribed did absolutely nothing to ease her pain, so she had to bear the pain. While trying to recover from the transplant, Ashley's liver failed. Through the grace of God there was a liver available for her, but even after that surgery, things weren't smooth. Once the liver started to do its work, Ashley was struck again with bad news... appendicitis of all things! She underwent the appendectory, and is currently at Duke, recovering. Her strength of spirit is amazing. I have no doubt she will fight this and be the healthy, vibrant young woman she is destined to be.

Ashley is supported by her mother, TuWana. TuWana had to leave her job during the original transplant, but due to the exhaustion of all FLMA, vacation, sick leave, she had to return to work this month. The bills are piling up on her and the thought of not being able to care for your child the way you need to and want to can be devestating.

One of the other mothers in our transplant family--Kate's mom, Alison--has arranged for a collection of donations through a friend of hers. We are asking for your help. In Alison's words, your financial contribution can make a significant contribution in their lives in the immediate future. Ashley does not have any type of organized fundraising being done on her behalf. Alison's friend, Beth Guest, has agreed to collect donations for Ashley. Your check can be made payable to Beth Guest with "for Ashley" written in the memo field. Please mail to Beth at 3505 Amanda Lane, Nashville, TN 37215. Beth will desposit the individual checks and write one check to TuWana. A list of donators will be sent to Ashely, unless you request to remain anonymous.

And, since Alison wrote it so well in the email she sent to me, I will quote her as saying this:

Please know that I do not ask for this help lightly. I do not assume that everyone I contact will be able to contribute. I only ask for your assistance because this is such an extreme circumstance and Ashley means so much to me... to all of our family. We can’t heal her body but this is something we can do which may ease the burden the Bagleys are carrying just a bit. If you know someone else who may be interested in providing assistance to Ashley, please feel free to pass this (information) along.

If you have any questions regarding Ashely, her story, the donations, you can contact me and Alison through email. My email is cynthia@frankiepants.com and Alison's is kirkplace@comcast.net. Please, please, take a moment to read her story. It would mean so much to all of the transplant families.

Thursday, August 31, 2006

Good evening, everyone! I know the updates are getting further apart. I'm actually working on revamping the site, so I'm devoting time to that as well. But, I realize I should have updated on Frankie's latest run of evaluations down at Duke...

Monday we had his developmental review at UNC with Dr. Escolar. And, that actually turned out to be a mini-evaluation, with her associate evaluating him physically. There wasn't a speech or language evaluation this time, but I think that may have been a bit of a scheduling snafu. In all actuality, we had built it up in our heads that it was going to be a rough day on Frankie, but it ended up being pretty easy for him... no stress at pointing at objects, threading a shoe lace through a bead, sorting, etc... Okay, so it ends up being more stressful on Frank and me because we're always worried that he's falling behind, mentally.

Tuesday, Frankie had his MRI and EEG. Those went well, even more so because the EEG technician came to Frankie in MRI recovery to do the exam while he was still sedated. His MRI showed some fluid on the brain, but no pressure on the brain. So, we just have to watch for any changes in behavior or personality which would indicate a problem. Thankfully, the EEG continued to show normal brain wave activity.

After a quick lunch, we had an orthopedic appointment in another facility. Unfortunately, we had to wait roughly 2 1/2 hours for the doctor to tell us that he didn't see anything wrong with Frankie's joints. However, he couldn't really evaluate him since he was still floppy from being sedated. When Frank & I helped Frankie stand in front of the doctor, he lifted his right leg and wouldn't put it down, but just waved it around the air for a few seconds. It was actually quite comical. With the help of a portable DVD player and a dozen or more DVDs, Frankie handled the 2 1/2 hours beautifully.

Wednesday, it was clinic day. Normally, Frankie just gets the Daclusimab and Pentamadine infusions, but his IGG levels were below the "safe" zone, so he also received his dose of IVIG (immune system boost). So, the day started early, around 8:30am and we were there until about 2:00pm or so... if memory serves me. Since Dr. Szabolcs was away this week, Jerelyn went solo on the clinic evaluation. Frankie's skin was pretty bad (rash), so Jerelyn added Orapred to his medications... which I wrote about in a prior update. Other than his skin, they are very pleased with his recovery.

Thursday was a big day, when you count the number of appointments, but they were scheduled perfectly, that we just went from one to the other, with each one not being too long.

The first appointment, audiology, went okay. But, since Frankie was giving them inconsistent results, they asked that we come back on Friday to redo the exam, just to be sure. What Frankie was hearing and what his ears were able to hear were not matching up. On the Friday appointment, he did much better and showed that he can hear (adequately for communication)... he just hears what he wants to and responds to what he wants to... stubborn little guy!

After audiology on Thursday, we had Pulmonary Function testing... all Frankie has to do for this test is blow as hard as he can into a mask to measure the strength of his lungs. Sounds easy, right??? Well, it's not really easy to tell a child to blow as hard as he can, when he doesn't understand that command. So, Frank had to grab his thigh to make him laugh out loud. That did the trick.

Since we got that done so quickly, we ran downstairs to see if we could squeeze in the chest X-ray before Echocardiogram. The ladies there were awesome... they didn't have anyone in line, and they rushed us in, got the two X-rays done (with the help of Frank & myself). Although, Frankie didn't really appreciate being put in the positions for the proper picture, his tears dried up pretty quick.

Echocardiogram was next... no surprises here, other than the fact that it required three people to get all of the pictures they needed for a complete evaluation of his liver, spleen, heart, lungs, etc...

So, after all was said and done, Frankie really was a champ and his recovery is going very well. We met with Dr. Szabolcs and Jerelyn on Monday, (we stayed the weekend). Our big issues are the fluid on the brain and the rashes that don't ever seem to go away completely. And, since he can't seem to maintain a good FK level, we'll be on the immuno-suppressant for a while longer, I think. And, that makes him vulnerable to colds, flus, germs... Despite all of this, his immune system is recovering, but it's not 100% yet. We're hoping for better news on our next trip down to Duke in January.

---Today at clinic, Frankie's FK level dropped to it's lowest -- 4, both Duke and Yale want to see this number above 8, preferably 10. We can't seem to get a handle on this. Ugh.