Friday, July 1: Day +1

Hey there everyone! I'm reading that, and I realize that's how I start almost every paragraph, sorry! It's roughly 5:30 pm on Friday and things were much better today.

It was my night with Frankie last night. He woke up around 8am and after a quick diaper change, was in a great mood. He ate for the first time since last Friday. He ate all of his (hospital food) eggs, most of his Fruit Loops, and about 5 ounces of apple juice. That may not seem like a lot to any of you, but it's a good sign for us.

For the past few days, Frankie's also been on high blood pressure medicine and Benadryl to calm the hives he got from one of the medications. Both are still a bit of an issue, but the doctors and nurses are watching him carefully, just as they do for every child on this unit. I have to say this unit is so special. There is such a feeling of community here among the patients' families and the staff.

Today, there was a memorial for all of the children that have passed since April 1st, and time to speak about those children on the floor now. Honestly, I didn't know what to expect. We have only been on the floor for a couple of weeks, so I didn't know any of the children who have passed, but I can tell you that every single one was special in their own way. It's wonderful to know that there is support in every direction you look, whether it be from your family, your neighbor, nurses, doctors... If you need to talk, someone is always there to listen. And, if you need your space, people respect that, too.

Lunch proved to be a little less exciting than breakfast, with Frankie eating one vanilla wafer. He did better at dinner, though, and has been in good spirits all day. He has been laughing, clapping, smiling and interacting with us throughout the day. His real joy comes from watching Elmo, of course... but also looking at pictures (of himself) on my laptop. When ever he sees me working on the laptop, he tries to grab it and hits all of the keys on the keyboard. Luckily, I save often!

While the chemotherapy and the transplant are behind us, the effects have yet to manifest. One other child on the unit, also MPS III Type A is a week ahead of Frankie. She just lost her hair today, and has been struggling with mucositis (mouth sores) for four days. So, we have that to look forward to! Yikes! Not to mention the fact that his White Blood Cell count is zero, so infections are a HUGE concern.

PS... I've heard that the Hamden, CT fireworks have been postponed until tomorrow night (Saturday, July 2).

Sunday, July 3: Day +3

We'd like to extend a HUGE THANK YOU!!! to everyone who helped our family spread the word about Frankie and MPS III Type A at last night's fireworks in Hamden, CT. Frank and I received a ton of calls today giving us a recap of the night's events. It was a tremendous success. We cannot express enough our thanks to our family and our wonderful community. It really amazes us how people have come together to help our son, people who have never even met him have donated so generously their time and resources. And, a special thanks to all of the children who gave up their allowance money to purchase a wristband. Please know how amazing you are!! Thank you!

Frankie's day today has been rather quiet. And, somehow, it just flew right by. His blood pressure continues to be an issue, so the doctors have decided to put him on a high blood pressure medicine drip. This IV flows constantly throughout the day and night to maintain a "normal" blood pressure. Prior to this, Frankie was on two medicines twice a day to control this. Unfortunately, that wasn't working so well. Being put on a drip isn't a bad thing, mind you. It is actually better to control it this way than for his blood pressure to spike and go down, spike and go down throughout the day.

His WBC (white blood cell) count is still at zero - which is to be expected. His platelets are low, so he received a transfusion today. Platelets are necessary to prevent bleeding. And, his RBC (red blood cell) count is also low. This affects his hemoglobin (part of the red cell that carries the oxygen to all areas of the body).

Despite all of the daily treatments, Frankie continues to have an upbeat attitude. He still tries to avoid the nurses at all costs, so to me, that means he's got a lot of fight still in him. It's when he doesn't fight, that I'll start to get really worried.

Monday, July 4: Day +4

Last night around 6:30pm, before I left, Frankie fell asleep in his chair. This is what happens when he doesn't take a nap all day. It was too cute, so of course, we took a photo of it! (Frankie asleep). Unfortunately, Frank paid the price. Frankie was up at midnight until 3am. We've basically forced him to nap today!

Frankie's blood pressure continues to be an issue. The IV medication they started yesterday was gradually increased three times already today. So, after that wasn't having the desired effect, the doctors put him on another medication. They say that two medications given together make the other work better (synergistic effect).

He had a RBC (Hemoglobin) transfusion today, along with his daily dose of TPN (IV nutrients), lipids, antibiotic, etc... He has five drips and two medications going into his system via the central lines throughout his day. Sometimes it's more and sometimes it's less.

He also has attached to him a blood pressure cuff (now on him 24/7 and tested hourly), three electronic leads on his back that measure his Oxygen Saturation level, Heart Rate and Respiratory Rate, and a "glowie toe"... forgive me, but I don't know the technical term for this, but it's a lead wrapped around his toe that glows red and also measures his heart rate and oxygen saturation levels. I have since nicknamed it "glowie toe." The technical term sounds like "pulse-sox" but as to the correct spelling, you've got me there.

His hair is also beginning to fall out. It's not coming out in clumps just yet, but every time he touches his head, you can see a few strands fall into his face. And, when he gets up from his crib, there's a bunch of hair still on the blanket. So, of course we're trying to take more pictures of him now to remember his blonde hair. They say it grows back coarser and darker. I had fun with it yesterday! (Frankie's awesome hair).

Once the mucositis begins, he has pain medication already scripted for him that will ease the discomfort. So, the next couple of days are going to be yucky, to say the least. But, that's on target for how he's supposed to recover from the transplant/chemotherapy. What they say up here on 5200... if you feel like crap, then it's working. It's just really difficult to watch a child go through this just in the hopes he will get better.

And, as he naps quietly, I can't help but smile. He's absolutely adorable. I know I'm biased, I just can't help myself.

HAPPY JULY 4TH, EVERYONE!

Tuesday, July 5: Day +5

Well, depsite a "normal" bedtime, Frankie was up this morning and WIDE awake at 3am. At 4:30am he went back to sleep, thankfully. However, it wasn't before he played a round of "peek-a-boo" with a few of the nurses on duty last night. Even in the wee hours of the morning, he's still a ham and a tremendous flirt.

While his levels haven't really changed all that much, and that's to be expected, his hair continues to fall out and his blood pressure is still being watched carefully. The docors had radiology come and take an ultrasound of his kidneys and bladder to make sure there wasn't any blockage that could be contributing to his high blood pressure. They won't get the results from that until late tonight or early tomorrow. Hopefully, there won't be any internal issues.

Recently, in the local paper here in Durham, The Herald-Sun, there was an article regarding new legislation that would establish a public network of human umbilical cord blood stem cell banks. The researcher mentioned in the article, Dr. Joanne Kurtzberg, is the Director here at Duke for Pediatric Bone Marrow and Stem Cell Transplants, and one of Frankie's doctors. She is a pioneer in her field. Please click on this link to read that article: Legislation Would Aid Access to Cord Blood.

Wednesday, July 6: Day +6

Good afternoon, all! I figured I'd capitalize on Frankie's naptime by writing a little bit today. His hair continues to fall, but he still looks cute to his mommy! I'll put some links to new pictures below today's journal entry. I left them a little larger than the photos on each page, so for those of you who are still on dialup (Tracy), you may want to run some errands while they download! ha ha ha

Over night, he did spike a fever that the doctors couldn't really explain. So, they had cultures drawn to make sure he hasn't caught a bug. They also started a broad spectrum antibiotic, just to be sure. Since his WBCs are still at zero, an infection at this point would not be a good thing (understatement).

When we saw the doctors this morning, they told us that the sonogram of his kidneys came back negative for any internal blockages. So, there's really no physical reason for his high blood pressure. They have told us that the medications can cause this to happen, so it's not a huge concern, but they will continue to monitor it and adjust his three HBP meds as necessary.

One of our nurses, Chris, has informed me that my terminology for Frankie's "glowie toe" is perfectly fine to use!! But for those of you who would be interested in the actual name, the lead put on Frankie's toe is called pulse oximetry, "pulse ox" for short.

Friday, July 8 : Day +8

Okay everyone, I'm so sorry for not writing earlier. Things haven't been so great here at Duke. Frankie hasn't been feeling (or looking) himself, consequently, Frank & I have had to tend to him more so than just a few days ago. Forgive me if I forget to write certain details that would have proved more timely and interesting. So, where do I begin??

On Day +6, Frankie had just started to spike a fever that the doctors couldn't really explain. And, it pretty much spiraled from there. He has had a fever now for two days straight. I don't believe it's been below 101 degrees during this time frame. And, if it has, it wasn't for very long. He has been hovering between 102 and 104 degrees since Wednesday.

On Day +7, yesterday, the fever was accompanied by an onset of a rash from the mid-belly up. It wasn't making him itchy, but it appears that the mucositis has set in. And, unfortunately, for little boys, this extends down through his entire system to his urethra. This makes urinating pretty uncomfortable for him.

So, in the afternoon, they started Frankie on a morphine drip "as needed". What this means... we could press a button every 8 minutes and it would disperse .3 mg of morphine into his system. Even if we pressed it before the 8 minutes was up, the machine would not disperse any more morphine... a check, if you will, to make sure the child doesn't overdose.

At this point, Frankie started to get extremely lethargic. Even still, the doctors suggested that we get him walking (not being pushed in a wagon) to work his muscles, bones and lungs. So, Frank & I got him up and forced him to do one lap. It was excruciating for him. He didn't want to do it at all, plus, he kept trying to tear off his mask.

Day +7 (night)... One of Frankie's nurses, Chris, was with us again on the 7pm-7am shift. Frankie wasn't maintaining a good oxygen saturation level, so she rigged up the blow-by to help him out. Generally, they like children to maintain a saturation of 92 percent or above. This actually served a second purpose... to keep him cool during the night, as the oxygen is blown into his face, kind of like the breeze of a fan. I think that's why he was able to sleep comfortably.

Day +8 (am)... Frankie and I didn't wake up until 9am!! Frank and Bobby (friend from home) showed up relatively soon thereafter, Oasis Latte in hand for mommy!! When we sat Frankie up, we noticed something quite different from yesterday. He was completely swollen. His lips, his cheeks, his eyes... everything. It's amazing how quickly the body changes. We thought maybe he was so swollen in his face because he was sleeping on his belly, but when we did his daily weight, he had gained one pound from the day before. This is fluid retention, a combination of all of the drugs/medications in his system.

Frankie's behavior most of the day was pretty subdued. While I was out running errands, the speech pathologist stopped in to work with Frankie. Apparently, he worked with him for an hour, but Frankie wasn't really participating as best he could have. In addition to that, Frank and Bobby had Frankie walk another lap on the unit, which, again did not go smoothly.

So, we kept Frankie sitting in his booster chair as much as we could. Although, there were times where it looked like he could fall asleep in mid-Elmo watching, he hung in there. We were even able to get him to do one more lap before the day was done.

The rash has now completely covered his body. They have given him three prescription creams/ointments to keep it under control. Apparently, if you let the rash go, it could enter his system and really do damage to his internal organs. Great. So, ever four hours, we have to lather him with cream. But, we have to alternate what cream is used because of the steroid issues.

Plus, they've started him on a steroid drip to "control" the rash and have decided to turn the morphine "as needed" to a constant drip as well. Fun.

So, for the past 48 hours, or so, things have been pretty yucky in the land of 5200 (PBMT - Pediatric Bone Marrow Transplant Unit). And, even though they say that as we approach Day +12 things will get worse before they get better... I have a hard time imagining that, nor do I want to.

Some Things To Note
I've changed the links a bit to the right. I've added some links that I hope you will take a couple of moments to view. Some of the links are for children we see every day and for others we have met along the way. Please take the time to visit them. These families have given Frank & I such wonderful support while going through their own personal pain.

I've also added a list of some businesses in the Hamden/North Haven area that have allowed my family to place donation canisters at their establishment. And, while it seems an easy thing to do, to give a family a little space on their countertop, I understand why some businesses say "sorry, no can do" and why others open their doors wide open. I just wanted to thank those people and businesses that opened their doors to my son.

One of the businesses listed is the Connecticut Pageant. These wonderful people will be attending most of Frankie's fund raising activities up in Connecticut, depending upon their schedule and ours. Please look for them at the next event you attend!

Sunday, July 10: Day +10
Woops! Did I say I was going to update the pictures on Saturday??? Okay, things slipped away from me. I apologize. Frankie is still having problems maintaining a normal blood pressure. Per one of the doctors today, he (Frankie) as been one of the most difficult patients he's had, with regard to his blood pressure). I can't tell you how many times they have added and changed this medication.

Also, his bilirubin was elevated yesterday, which could have indicated VOD (a liver disease). This morning, the bilirubin was still elevated, above the normal pediatric levels expected, but down from yesterday. Plus, the ultrasound the doctors ordered showed no signs of VOD, but there is some "sludge" in his gall bladder. This could be a side effect of the mucositis.

In just one day, it's amazing how much the body can change. Frankie woke up this morning "gooey". I don't have another word for it. The mucositis has really set in. His mouth is continually filled with mucous (I liken it to the gila monster) and his gums are incredibly swollen.

But, on a brighter note, Frankie's WBC count went from zero to 0.1. Which, for some of you out there doesn't sound like a huge deal, but it's pretty big on 5200. Even though the WBC did go up, they could go back down as Frankie is also being affected by GvHD (Graft vs. Host Disease). This has given him a complete body rash that we must control with three types of creams three times a day. Two of the creams aren't so bad, but the third is a very thick ointment that makes Frankie shine like a greased pig. (nice image, huh?)

We are also forcing Frankie to walk a couple of laps a day (at the very least) out in the hallway. This helps his muscles and his lungs. I feel sorry for all of the families on the floor, as the rooms are not sound proof. But, once we get him going, he does pretty well at getting two laps in each time.

I took a couple of pictures of Frankie, Bobby, Frank and the massive pole to which all of Frankie's medication is attached. The nurses call it the Christmas Tree pole. Please note that this is the third pole we have had since we first were admitted onto the unit.

Some Things To Note
We found out who are primary and co-primary nurses are. And, I have warned one of them that pictures will be taken and posted. I may have to sneak them, though, if they do not cooperate. It's either, pose for the camera, or deal with the picture I get and post!!! Ha ha ha! Watch out, ladies!
Our Primary Nurse is Melody. She's on with me tonight. Frankie likes to blow kisses to her, but tonight, Barney won. Sorry, Melody! And, our four co-primary nurses are Chris, Jennifer, Shawn and Michelle.

We have a "Best Buddy" for Frankie. Her name is Kate. And, unfortunately for Kate, each time she shows up, Frankie is on the verge of sleeping! Kate's here to help play with Frankie and give Frank & I a break if we need it. Most of the children on the floor have a Best Buddy. They are volunteers that give parents/caregivers a break a couple times a week or can run quick errands (coffee!!!) for us as well, if needed.

I feel like I'm forgetting something...

Wednesday, July 13: Day +13
I didn't realize it had been so long since I've updated the web site. Sorry!!

Frankie is looking much better than the photos that were posted prior (July 10th). His rash is almost gone, but he's still bloated from the steroids and other many medications. And, for those of you who can't see the med pole in the picture, here's a snap shot of Frankie's wipe off board in his room. We keep a daily tab of what is going into his body and other activities that have to be done during the day.

His counts have increased a bit (0.5 WBC this morning) and his blood pressure medicine seems to be doing the trick. Currently, he's on two IV meds for BP and a patch. The doctors are hoping to pull back on one of the IV meds once the steroids are weaned from his system. I think that will take a couple of more days.

Even though his counts are up, the doctors are always cautioning us that they could drop back down. So, until we see a consistent rise in them, we don't want to get too excited.

We tried to take Frankie for a stroll in the hallway this morning before he got another dose of Lasix. This med makes Frankie pee A LOT, which helps with the fluid retention (bloating). However, we are constantly changing his diaper, which is LOADS of fun, especially when we forget to over a course of a couple of hours. YIKES!!

Back to the "walk" story... we got all the way down the other end of the hallway and were on our way back to his room when he started having a fit. He doesn't like wearing his mask in the hallway, and tries with all of his might to rip it off. But, with Frank pushing his IV pole and me holding both hands, his only recourse is to drop onto the floor. And, when that happens, I pull him back up on his feet and we keep going.

Only this time, no only did he plop down on the floor, but he threw his head down and smacked his forehead on the tile floor. In the chaos that followed, I couldn't get him back up on his feet without him managing to grab his mask clean off. This becomes very stressful for everyone around, because he basically has zero WBC, so any particles in the air that could cause an infection, regardless of how careful we all are on this floor, could easily affect him.

When we could control his arms (pin them in mine) and get his mask secured, we just carried him back to his room. We put him in his crib and he cried for a little bit. Now, since his platelets are so very low, he will most likely have a major bruise in the middle of his forehead (which, I will of course take a photo of and post). And, after the doctors checked him out (concussion) he was given the okay to go to sleep. (He is going to get platelets today, too, so hopefully, that will help with the bruise).

There are a couple of stories from the past two days of my lack of updates, but they all seem so far away right now... Just know that each day, either Frank or myself does something so entirely silly, that we keep our nurses laughing, HARD!!!

Well, it's almost 1pm on Wednesday... pizza time for the parents, and I'm starved! I'll try to write more often. Thanks for reading!!!

Thursday, July 14: Day +14
Good morning, all! This will be a quick update as it's still early in the day. Frankie's WBC held at 0.5!! It was Frank's night last night, so when I finally dragged my butt out of bed this morning and got to the hospital, Frankie had already been up and was headed back down for a nap.

Mema and Poppy (Frank's mom and dad) arrived last night safe and sound. They were very eager to see Frankie this morning, and were able to visit with him before he fell asleep.

As is normal, every time the therapists (speech, occupational and physical) stop by to work with Frankie, he's sound asleep. In Frankie's defense, he's still getting Benadryl during the day, so it really toys with his sleep patterns. Thankfully, he still sleeps through the night pretty well.

Satuday, July 16: Day +16
Good afternoon! Things are looking better for Frankie. Yesterday, his WBC was 0.9 and today it is 1.6!! The doctors are really pleased with his progress. However, his blood pressure still fluctuates. The doctors have figured it out though, so we may not have to worry about that much longer.

His personality is also starting to come back. Frank called me this morning at 1:30am to put Frankie on the phone with me. Apparently, he was wide awake and in a fabulous mood. I was up watching TV and was glad to hear my little boy's voice say "What's dat?" before hanging up on me.

The fund raising event at The Corner Pocket on Thursday night went incredibly well, as we have been told. And, aside from a friend's car getting broken into, the night was a complete success. Sorry, John! Many, many thanks to all of the people who so generously donated items!!

Today, another fund raiser is going on, the Tag & Bake Sale. And, I think that's going well, too, from the message left on Frank's cell phone. I can't wait to get the update on that. I'm just glad that the weather held up.

I've got a couple of pictures to post, but we have to get Frankie walking, so I'll probably get to that later tomorrow.

Sunday, July 17: Day +17
Well, I'm here at the hospital, and doing my update late in the evening, so that when most of you read this it will already be tomorrow. (Wow, what an amazingly long run-on sentence!)

Today was a good day for Frankie. His spirits are definitely getting brighter, with him laughing and smiling more. And, he's definitely blowing more kisses to his nurses, so that's a good thing. Although, he still does not like walking in the hallway wearing his mask and will moan/cry the entire time. The nurses are great and cheer him on, just to get one lap out of him. We have taken to having him hold a marker in each hand, just so he won't rip off his mask. It's pretty comical... here's this little boy, in a T-shirt and diaper, grasping two markers, getting claps and cheers from all of the nurses. And still, he moans.

Frankie's WBC today was 2.0!!! This is a great sign. One more day like this, and we can say that his cells are grafting. But, we won't know for sure what percentage of the cells that are grafting are his and what percent are the donors. I'm not sure when they can test for that, but I'll find out. In any case, it's a great sign.

Today and yesterday, Mema and Poppy got to spend extra time with Frankie. This allowed Frank and I to go out to dinner and shop (last night) and to do more shopping today. It was nice to get out, together. For those couple of hours, thing felt "normal". But, even as we were away from Frankie for just that short amount of time, I missed him terribly.

Frank goes back to work tomorrow. Thankfully, his company has been able to relocate him to the Durham office. This will prove a little more complex once Frankie's an outpatient and needing to go to clinic every day. We only have one car down here, so someone is going to be stranded somewhere... but we'll work it out.

Tuesday, July 19: Day +19
It's amazing what a few days can do. Okay... maybe not just days, but the weaning of a few drugs can do the trick, too. Frankie's personality has definitely started to come back. He's laughing and smiling much more throughout the day than he was just last Friday.

However, Frank and I do believe that Frankie just figured out that he's bald. And, it didn't appear to make him happy. He kept rubbing his head with his bottom lip stuck out. This was followed by him trying to grab any hair on his head that he could. Unfortunately, the only hair on his head are his eyebrows and eyelashes. Thankfully, he didn't lose those.

Frankie's WBC count continues to rise slowly. He's now at 2.5 today. He was 2.1 yesterday (for comparison). The doctors are testing out his blood pressure today by removing one of the constant drips and replacing it with a "by mouth" equivalent twice a day. If his counts continue to rise and we can get his blood pressure under control, then we can start talking about going "out patient".

Being "out patient" is a little scary for Frank and I. Especially since Frank is back at work (temporarily assignment here in Durham). Frankie and I will have to go to clinic daily for the first couple of weeks. And, when you're at clinic, you're pretty much there for the entire day. This eventually changes to weekly, but the all-day clinic visit will be the norm each time we go.

Frank and I will have to learn how to give Frankie his IV medications, change his lines, the caps on his lines, his dressing, draw blood, flush his lines, etc... Basically, we become our son's nurses for the rest of his life. The nurses have to train us on how to do all of this prior to us being discharged. I tried changing one of his caps over the weekend and failed miserably, even though Jen said I did fine. Thankfully, they will let us practice more before we leave! UPDATE: In the middle of updating this page, Melody let me try changing his caps again, and I did much better this time.

Mema is making dinner for the entire unit for tonight. The word has been spread, and with only a hour to go, our bellies are rumbling!! I'm just waiting for the call to meet them downstairs (we're on the fifth floor) to bring up the food.

Later tonight (if I'm not completely stuffed and have not fallen asleep) I'll post a few more pictures of our nurses. I still need photos of Shawn, Chris and Michelle.... I'll get you my pretties!!! :)

Wednesday, July 20: Day +20
Good afternoon, all! Well, I've finally done it... I added a "Pictures" page off of "Our Diary" page. On that page there is a link that will bring you to more links (I'm crazy that way) to some photos of Frankie before the transplant (when we were admitted on June 20) and pictures since then. I tried to give a little description of each photo so you could sort of know what to expect.

Frankie's WBC went down today from yesterday. But, that's okay. The doctors told us that this count would fluctuate... it's the long-term that's important. Even better is his personality. However, you'll see in the last few photos on the Pictures page, that he really wants to go outside. I think it's sinking in each day that he has been inside for a month as of today!!! YIKES!!! Hey, but at least we can now get a pass for free parking! Woo hoo! Lucky us!

We may be seeing a light at the end of the blood pressure tunnel. Frankie's BP was great all last night. So, the doctors are weaning off another drug and changing more things around so there will be more "by mouth" meds instead of constant drips. I think I'm going to miss the Christmas Tree Med Pole... uh, not.

Mema's lasagna dinner was a big hit last night. Even more so were the awesome cakes she made!!! There's still two trays of lasagna left over, so I gave one to the nurses so they could chow down. We have to get rid of the leftovers because a local church will be bringing food tomorrow night for the caregivers... nice to have "home cooked" meals.

I got to draw Frankie's blood for his afternoon lab draws. It's much less complicated and less stressful than doing a cap change, that's for sure. I think I did okay. Melody was right there, guiding me along. This is going to be quite the adventure once we're discharged... ugh.

Please take a look at the photos, if you have a chance. I think I made them small enough to download quick, but large enough to see... well, I can only hope... :) Take care, all!!!

Friday, July 22: Day +22
Honestly, I had started to update the web site last night. But, for those of you who don't know me, I get these massive headaches that render me useless for two days. And, yesterday was the first day. Usually, it begins to taper off later in the second day, but I'm doing okay right now (8:45am).

Prior to now, I've always been slightly reserved when talking about other children on this floor, mainly for privacy. But, we're such an instant family here, that I feel like you've all missed out on these beautiful people we've met along the way. That's why I've put their links to the right. Please do me one favor. If you don't visit their sites, just please send good thoughts and prayers to all of these children.

For the past few days, Frankie has been more animated and eager to be out in the hallway more and more (with his mask even!!!). He sees all of the other kids with their masks on, so I think that helps him. He even spent some time playing basketball with AJ yesterday. Okay, it was more like taking turns throwing the ball at the net, but it was a good time. I think AJ had a good time with Frankie, too. AJ is 4 1/2 years old, and the sweetest little kid you could ever meet. He's got these gorgeous blue eyes...

Frankie also gets to see Kate in the hallway. Kate likes to stroll (be in her stroller) the hallway almost all day! Her poor mom can't catch a break. It's not easy pushing a stroller and hauling a big med pole at the same time. Kate is always chatting with the nurses and comes by to see Frankie when she's in the hallway. We (the adults) have tried to get Frankie and Kate together... I think Frankie's warming up to her. Right now, he just stares at her. She's the older woman!! :)

Michael and Ashley are a couple of the teenagers on the floor. And, I think it's a toss-up as to what would be better... to be older and know what you had to do and what is going on, or to be young and not know why all of the nurses and doctors are poking you. Michael and Ashely have great attitudes about being here. I could only hope to have their strength. Both of their families are great, too. Despite being here, we all seem to manage smiles and laughter each day.

And, even though there's talk of discharge soon, Frank and I are nervous about that day. We have grown accustomed to our routine here, the families, the nurses, well... everyone. I'm going to miss being on this floor and having someone to talk with and share news with on a daily basis. I'll miss making coffee (3 packs is perfect, don't let anyone tell you different!), labelling our food, waiting in line for showers... okay, I'm stretching it now. But, there's something "safe" about being here. I'm going to miss that.

I'm sorry that I haven't written more stories about these families and the nurses as we've been here. There have been some funny stories, that's for sure. And, these stories and memories will be a part of Frank, Frankie and I forever. We're still here, for the time being--a beep away from our nurses. They are absolutely fabulous!! We have an amazing team working with Frankie. We couldn't be more thrilled to have met these wonderfully talented and lively women.

Well, I've rambled on quite a bit today. I guess I had a lot on my mind that I wanted to make sure I wrote it all down. Oooh... one more thing... I wanted to send a couple of personal "thanks" to some people, as I have been negligent in sending "Thank You" cards. I know they read this site, so I hope they won't mind me thanking them this way....

Frankie's Great Grandma Lil and Great Grandpa Andy - thank you for your generous gift, the crib bumpers for Frankie, and his "home-made" shirts that accommodate his central lines!! What a great idea!!
Frankie's Great Uncle Mike and Great Aunt Diane (wow, I bet you LOVE being called that!) - thank you for the Quizno's coupons!!
Hannah, Paula, Matt, Maria, Morgan, Christina and Bonita - thank you so much for the BIG box of toys for Frankie - you just may have Elmo'd him out!!!
The Jurado Family - thank you for the wonderful care package you sent to Frank and I! You're wonderful people and you'll make the right decision! Prayers to you and Izzy!
Audrey and Kayla - thank you so much for your beautiful pictures for Frankie!! He sends you big hugs and kisses!

I'm sure I have forgotten someone... my memory and brain are in limbo right now. But please know that we appreciate everything that everyone has done and is doing for us. There's no way we could possibly begin to repay your kindness. So, to quote one of the mom's here and a Kevin Spacey movie... We'll just "pay it forward".

Friday, July 22: Day +22 - 3:30pm
Hi, everyone. Just a quick note to ask everyone to say a prayer for Frannie King and her family. This is very difficult to write. On Sunday, June 24, they will be taking Frannie off of the respirator. She has taken a turn for the worse and will not make it past Sunday. My heart goes out to her and her entire family.

Also, please say a prayer for another child that passed this morning, Kameron. He was in isolation when we first came to the floor and was then moved to Pediatric ICU shortly thereafter. I believe he was just a year old.

Many prayers to all of you!

Saturday, July 23: Day +23 - 4:00 pm
Well, Frankie's blood pressure continues to challenge the doctors and nurses here. And, they won't discharge us until that's under control. Also, his WBC count dropped down a little today. That's not a big deal, like I've written before. It was 3.1 yesterday and it's 2.9 today. What else??? Oh, yeah, we almost had to get another crib... that would have been crib number six, yup, six, for us... we seem to keep breaking them. It's become quite the amusing story on the floor.

Other exciting news??? While Frank was getting prepared to draw Frankie's blood for his 2pm labs, our nurse, Annie (from Trumbull, wow!) and Frank noticed blood on his belly when he lifted his shirt. Frankie's site had gotten pulled or something which caused it to bleed. We had to do a dressing change to clean the site (normal procedure). We're not sure if it pulled on the stitching or if it's a gash (hard to see behind the dried blood), so we'll keep an eye on it.

Michael, from down the hall, had one of his lines removed yesterday, in preparation of discharge. Mary, his mom, has told me that he's doing so much better now. His WBC is rising and his ANC (another good number to be observing - Absolute Neutrophil Count) is over 1000!!! Congratulations, Michael!!! It's really great news for them. I saw his mom and dad walking out with some stuff boxed up, so things are really looking up. (Our room door is opposite the door to come into and leave the unit. We get to see everyone coming and going.)

I'm sorry I haven't updated the Fundraising page in a while. I've actually lost some of my emails and will get a summary from one of my sisters so I can redo that page. The closest fundraiser is next Saturday, July 30th, and that's on the page. Hopefully, I'll get around to updating it prior to that event! One of the ladies from the Connecticut Pageants will be attending that event to help support Frankie. I believe it's Miss Teen Connecticut, Jen Golia.

Monday, July 25: Day +25 - 1:23 am
Okay, so I'm up... Actually, I will be going to bed as soon as I write tonight, so I'm not going to bed too late (normal for me at the hospital is around 2 am, if you can believe that!)

And, I decided to stay at the hospital again tonight, since Frank's sister, Laura, and her family are in town for a day. They're extending their summer vacation (from Williamsburg, VA) to "pop down" to visit us at Duke.

As more and more medications go from IV to oral dosages, I've been told that I'm very creative in getting my son to take his. At first, Frankie didn't mind getting one or two oral doses, but when you have to lay out seven in the morning and in the evening, he just flat out would not take his medication. So, I decided to be a little daring and put them in his sippy cup. I don't put a lot of apple juice, just in case, just enough to cut the taste of them.

I didn't think this route was all that creative. However, when you're trying to get a two year old to drink something when he doesn't want to, well, you have to improvise... so, I tempted him with a nice, dry saltine cracker! Did the trick, I must say! I'm sure he'll smarten up way too quick for me on this one, but at least for now, he's taking all of his PO ("by mouth") medications.

Frankie's WBC count jumped today (meaning Sunday). On Saturday, it had dropped just a bit to 2.9. But, today (again, meaning Sunday) it was 4.9!!! So, this is pretty good. But, as is the norm, we're still trying to work with his blood pressure to get him off of his IV drip of Nicardipine. There's no oral equivalent, so the doctors are going to work their magic starting tomorrow (meaning Monday, today).

Also, Frankie's blood gets drawn and sent away for testing today (Monday... can you tell I'm having fun with this now???). This test is a Chimera test that will tell the doctors (and us) what percentage of his blood contains donor cells versus his cells. Hint, people... we want DONOR cells! Jessie, the other child on the floor with MPS III Type A, got her test back a few days ago. Her blood showed 98% donor, which is basically, 100%!!! This is really great news!!! But, like their web site mentions, our children are still at risk for infections, complications, rejection... but, still, it's really great news.

We do not expect to get Frankie's results back before next week end... so, hang on and say your prayers for then!!!

Please continue to send good thoughts and/or prayers to the families on 5200. We've had a run of not-so-great news over this weekend, a couple of scares, and losses. I've been told that Frannie King passed away today after being taken off of life support. Her family had no life insurance and all health insurance ran out long ago. Please visit Frannie's web site (listed under my Club 5200 links).

Let's see... other updates??? It's hot out... and humid. But, seeing as I haven't felt the muggy warmth of the North Carolina sunshine in over two days, it doesn't really bother me all that much. :)

Happy Notes: Michael (teenager) continues to get better each day. He was granted a "pass" today and was able to leave the sanctity of our unit; we saw Kate out in the hallway today walking and later in her stroller... chatty as ever; Benjy is doing much better after having a short visit to the Pediatric ICU; I didn't see Ashley today, but I did hear her laughing with the nurses, so that's gotta be good... oh, and to Ashley's mom... I'm sorry about making fun of the 2-pack coffee!!! Michael Patrick continues to get better each day after transplant, mustering up all of his Spiderman strength to walk the hallway; AJ had a nice visit with his family this weekend and is doing well after starting up chemo again; Jana, our next door neighbor, is trying not to monopolize her dad's attention and allowing him "breaks" to get coffee and take a shower! :) long story; we met two newbies to the unit... Noelle and Asher, I believe they are both under two years old... don't hold me to that... I'm just guessing/trying to remember.... okay... now it's 2:04am!! I gotta get some sleep!

July 26: Day +26 - 5:00 pm
Well, it's only been a couple of hours, and we already miss Mary and Michael. Michael got discharged today!!! :) Congratulations to him!

Cari, Jessie's mom, and I, have been meeting with Leigh, the discharge nurse over the past few days, learning the pumps and what to buy for when we're discharged. But, some things have arisen that have pushed our discharge date back. I haven't written anything specific because it changes on a daily basis anyway. I just don't like getting my hopes up (or anyone else's for that matter), so I haven't posted any specifics regarding that date. And, I probably won't ever post that date,until we're walking out the door.

As most of you know by now, it's Frankie's blood pressure that is keeping us in the unit. In addition to that, Frankie has had a fever (low-grade) for the past three days and his CMV level came back elevated yesterday. CMV is a virus that Frankie had already been exposed to prior to entering the unit. Even though the CMV level was elevated, that just means that the virus has been activated. He does not have an infection at this time. The doctors have responded by putting him on another antibiotic specific for CMV to prevent any possible infection.

We just met with the doctors and they will try to decrease his BP meds today (again) and increase the dose of his BP patch. If that works, then we've made some progress toward the door. But, I'm still nervous about that prospect. I don't think I'm emotionally ready to leave the unit. I wish I could take all of our nurses with us.

Michael Patrick's dad just let me know that the link to AJ's site was misdirected. I just corrected the link. Thanks, Mike!

Thursday, July 28: Day +28 - 3:00 pm
A couple of new things to report. As of 7pm last night (Wednesday), Frankie has been put on "Contact Isolation." What that means is that due to the presence of the CMV virus in his blood (elevated=active virus), anyone walking into his room must put on a yellow gown and gloves before touching him or anything in his room. And, when Frank or I leave his room, we have to put on the yellow gown and gloves. I have a picture of me in the gown and gloves, but haven't downloaded it from my camera as of yet... I'll post it when I do (next couple of days, I'd hope).

Since the CMV was elevated in his blood and a chest X-ray showed a very minute spec of a possible infection, he was put on another antivirus medication which proceeded to give him a lovely rash and his ears swelled up. He didn't sleep all that great through the night, but on a plus note, his fevers seemed to go down during the night. These may or may not have been because of the CMV and/or the tiny spec of something that was seen in his x-ray. The doctors can't say for sure. So, he'll be having cultures taken of his blood sent more frequently to test the CMV level (normal testing is once a week).

And, while this is has set us back a bit, we may have made some progress on his blood pressure. The doctors may take Frankie off of his IV blood pressure medication tonight (they've been slowly weaning it). If he is able to maintain "good" reads, then that will have been a huge accomplishment, and even with contact isolation, we're closer to the door.

So, right now, Frankie's napping. Because more blood is being drawn more frequently for testing, his Red Blood Cell (RBC) count has dropped and he's now receiving a blood transfusion to boost his RBC. His body isn't making RBCs since the transplant. That "ability" doesn't come back for a couple of months. So, these types of transfusions are expected. But, when he gets blood transfusions, they also give him Benadryl... hence the nap. I think I may doze off, too... ciao for now!

Saturday, July 30: Day +30 - 11:00 am
For those of you reading this, I hope you all were able to go to the Family Fun Day in Wallingford. My sister, Marie, was on her way there, talking with me on the phone, and was able to tell me it already looked great! I can't thank Melissa and Brendan enough for spearheading this fund raiser. From what Marie has told me, Melissa has done a fantastic job at organizing the event. Marie even said it was talked about on Channel 3's local news this morning. Wow!

This fund raiser was actually the first real "big" event that my family and friends began to plan from their first fund raising meeting, and, for whaterver reason, I hold this one a bit closer to my heart, probably because it just spurred from a causal conversation I was having with a friend. Brendan and I met through work at UPS. And, he only found out about Frankie a couple of weeks before we left for Duke. He called me soon after our conversation and told me that he and Melissa, his wife, wanted to help. I had never even met Melissa at this point, and yet, she wanted to help Frankie through her work and her annual fundraiser.

Out of the bad, I continually find good... If it weren't for Frankie, we would never have met the families on this unit, the nurses that help us, or should I say, deal with us, every day! If it weren't for Frankie, we would never know how many people truly care about him, about his well being. Regardless of what happens and despite everything he has been put through, he is our son, our sunshine. He makes us smile and laugh every day. If his smile has put a smile on your face, we are so incredibly happy for that.

So, now to the really great news... Frankie had blood drawn on Monday to test the percentage of donor cells versus his own cells (the WHOLE reason we're here). His test showed 100% donor cells!!! This is incredible news! Feel free to clap, cheer, etc... I'll wait.....................................................................

Okay, that being said, the above test (called "FISH") examined 200 inerphase nuclei (cells), of which, all of them were donor cells. On or about day +100 (October 6th), the test will be run again to re-evaluate the percentage. The reality of this procedure is that the percentage of donor cells could go down because his immune system is still like a newborn's and any cough, sneeze, runny nose could affect him adversely.

In the meantime, he's still battling the CMV, which has gone down over the past day, so that's some more good news. And, once we can safely move from that hurdle, we're back at the whole blood pressure issue. His blood pressure seems to be holding steady, without having to increase any meds lately, and the doctors are thinking about "testing" him again by dropping the IV drip down a fraction.

Oh, I also forgot to mention that Jessie, the little girl who also has MPS III Type A, was discharged from the unit on Thursday. Congratulations, Jessie! We'll see her soon in clinic!!! I got an email from her dad the other day, and they're settled in their new apartment now.

And, a thanks to Ashley for the stuffed crocodile she gave Frankie yesterday. Ironically, that's what we've been calling him lately, because he rolls all around in his crib at night and ends up getting wrapped up in all of his lines. :)

PS... Thanks, Bobby! We got your gift from Anthony & Laura.

Saturday, July 30: Day +30 - 7:30 pm
Hi, everyone. I just wanted to send out our most sincerest condolences to the Grenet family of Hamden, CT. Allen Grenet passed away this morning. He is the father of our friend, Erik (Frank's Best Man at our wedding, too). Our thoughts and prayers are with them.

Sunday, July 31: Day +31 - 3:30pm
Well, we're still in contact isolation. And, I think Frank is close to going nuts. He's been in the hospital room since Friday afternoon. I think he'll be glad when he gets to go to the apartment tonight.

Yesterday afternoon was fun. The nurses and a couple of the older patients (Ashley and Greg) had fun out in the hallway dancing. We were fortunate to get a few pictures of them whooping it up! Frank had Frankie's door open a bit so he could see all of the action. I only wish I had my camcorder with me yesterday. But, I've got it now, so if they start dancing again, I'll be ready!! At least, that's my plan. In any event, it was nice to have a little stress and/or comic relief!!! They even busted out the Electric Slide! YIKES!

As for Frankie, today... he's doing very well. He's sitting on our bed with Frank playing at the window. He likes to slide the juice bottle across the ledge and periodically turn to check out what's on TV (either Elmo - shocker - Barney or Thomas).

Frankie finally blew some kisses to Kate today!! He's been practicing on the crib, so I think he was just waiting until it was just right! :)

He still isn't so sure about one of the nurses, Andre. Everytime he comes by Frankie's room, Frankie puts his head down or frowns or cries... We still think it's a "competition" thing... Andre is super nice, so we really have no explanation as to why Frankie reacts that way. Maybe he saw him dancing ... ha ha ha!!!

Oh, and one other note... tomorrow, I will be sad. I will have to start doing the math tomorrow... July will be over, and it was always easy to post what "Day Plus" we were... now I will actually have to think about it! I shudder at the thought! I'm going to have to dust of my brain cells for this one... be patient with me. :)

Sunday, July 31: Day +31 - 9:10pm
I just wanted to make sure that everyone checks out the Fundraising link. I've updated it with new information, and just wanted to make sure to get the word out on all of the wonderful activities that are being planned.

Also, I wanted to make sure to thank everyone for continually supporting Frankie, Frank and I through this time. We really do appreciate all of the love, prayers, and hugs across the miles. I read Frankie's and my email with my mouth dropped open half of the time. I'm so amazed at how much people reach out to us with kind words, little stories, suggestions, ideas...

Thank you for caring and for loving Frankie.