Tuesday, August 2: Day +33 - 10:30pm
Sorry it's been a couple of days since I last updated this page. Frankie's had some new "issues" and I haven't been at the hospital for the past two evenings. And, if you haven't guessed by now, that's usually when I do my updates. Frank took the weekend nights, so I got some good sleep. Unfortunately, Frank wasn't so lucky.

Frankie hasn't had a decent night's sleep in a couple of days. We're not sure why he hasn't been keeping a normal schedule. I think it's because he's not getting the same type of exercise he was prior to going into contact isolation. We used to be out in the hallway three times a day, doing at least one lap each time. Since isolation, Frankie hasn't gone into the hallway. But, I changed that today!

I took one of the yellow gowns and cut it so it would "fit" Frankie. Basically, that just meant that he wouldn't trip over it. I still had to keep the arms long, so he wouldn't touch anything with his bare hands. I figured gloves would be out of the question. Frankie wasn't too wild about the gown, but once he got out into the hallway, that subsided, and he did one lap! He even picked up a basketball and threw it into the basket a couple of times, and down the hallway. It was good to get him out there today. We'll keep that up, since that's really the only exercise he gets. He walks around in his own room, but there's not much space for that.



Yesterday, two of the teenagers were discharged... Ashley went first around noon, and then Greg left around 8:00pm. It was sad to see them leave, but good at the same time. We had a blast the last couple of days with them on the floor. They were out in the hallway a couple of nights ago dancing with the nurses!! So, it was fitting that when each of them left yesterday, music was played and they danced down the hallway again with everyone throwing confetti and cheering! We're going to miss that spirit up here!!! Guys, if you're reading this... email me so I can send you the pictures!!!

So, we're still here, and unfortunately, Frankie's CMV numbers increased despite the anti-virus medication he's currently taking. So, the doctors want to increase the dose to battle the CMV before it does damage to Frankie. But, the caution with increasing the anti-virus is that it can do damage to his kidneys. Right now the dose he's getting is the "safe" dose. But, since the CMV numbers increased we have to breech that dosage amount... and we'll just hold our breath and hope that it doesn't cause more harm than good.

Blood pressure continues to fluctuate. And, the drugs for the CMV don't help. On top of that, his Bilirubin is elevated, so there's an issue with his liver they can't explain. We've had chest x-rays and ultrasound done on his chest and abdomen, and still nothing conclusive.

And, as I write this, Frankie has just gone down to bed after drinking half of his medications (no longer fooling him with the sippy cup) and then vomiting. So, I can only hope he got the majority of his medications in his system to help his liver, blood pressure, etc... I have been chatting with another mother who has been going through this same thing with her son, and I do believe the medications are doing havoc to their empty bellies. Unfortunately, Frankie's not eating anything, even with his IV nutrients on hold. I can only hope that he'll start craving food soon. If not, we'll have to put a GI tube down his nose to give him food that way. I'm not looking forward to that.

Saturday, August 6: Day +37 - 10:30am
Again, I have to apologize for the lack of updates. Things have been very draining lately, for more than one reason.

We lost another little girl yesterday. Jana passed away late yesterday afternoon. She had been in the Pediatric Intensive Care Unit for a couple of days. Her father, Hussain, and I had become friends on the floor. She was Frankie's next door neighbor, a gorgeous 5 year old little girl. Her smile and beautiful big brown eyes were breathtaking. My heart goes out to her father, her whole family at this time.

I remember the first time I spoke with her. She was in the Children's Space coloring and Hussain, never far from her side, was at the computer. She was coloring butterflies, so I showed her the sign for butterfly. Her father explained to her what I was trying to do. So, she tried to put her hands in the correct position for the sign. It's not the easiest sign to do, but it does make a child laugh when they're trying to do it themselves.

Our love and continued prayers go out to Jana and her family.

Frankie is doing well. He even started eating again. We've reverted back to jarred baby food, but the nutritionist said that we did the right thing, because it's easy for him to consume and digest. It's not the biggest intake for calories, but he does show promise. Besides, the cafeteria food they pass off to the children as edible leaves A LOT to be desired. Frankie refuses to eat what is brought up to him, but shows incredible interest in what Frank and I eat. Unfortunately, there are reasons we cannot give him our food (bacteria, being the biggest). So, we try not to eat in front of him.

His blood pressure continues to be the main issue as to why we're still inpatient. The one IV drug that is doing the majority of the work does not have an oral equivalent. So, even though he's on three oral blood pressure meds, and has a blood pressure patch, this FIFTH blood pressure med (the IV one) is the dose that keeps everything else under control. The doctors continue to watch his liver and kidneys for any adverse affects of these drugs as well.

We still manage to get Frankie out in the hallway at least one lap a day. And, while he's in his room, he's walking around, playing with his train set, his puzzles, or anything else to keep him from biting on his tubes. I still need to go to the store to buy him a teething ring, or something like that.

I have a lot of pictures to add to the site, but I just haven't felt up to it in the past few days. I hope you won't mind the delay.

Tuesday, August 9: Day +40 - 7:30pm
Hi, everyone! Things haven't really changed for us, perhaps that's why I've been a little slow in updating. I've also felt a bit burned out. I'm thinking the latter reason has more to do with my infrequent log entries. It took me a couple of days to recuperate from Friday's news (Jana). I'm not sure why it hit me as hard as it did, only that I experienced a pain I never want to feel again. But, unfortunately, I'm sure that's not going to be the case. You can't help but become a family on this floor. We will have success stories, we will have losses, we will laugh and cry from one minute to the next.

Our success story of the day... Kate was discharged today! I'm so very happy for her and her family. She is missed on this floor already, as she was the resident hallway patrol-girl. She was always getting pushed by her mom in the hallway, making sure that each room had a mommy and a daddy. And, each child had a pole. She was also on blanket patrol. A blanket is given to each child when admitted. It is hung outside the child's door for anyone to sign. Kate always made sure each blanket had a marker... not to mention, her signature "AH" as she pointed to you and laughed.

Frankie has been off of his IV blood pressure medication for over 24 hours! And, his blood pressure has been pretty much constant and within his "range". This is a very good sign. He's still on three oral and one patch med for his blood pressure, but it was the IV med that was keeping us in the hospital. The doctors still want us inpatient to make sure his BP doesn't rise over the next few days. If all goes well, we just may see a light at the end of this tunnel. But, no sense in getting excited just yet...

Thursday, August 11: Day +42 - 9:00pm
And then there was one... Sorry, it just seems as if everyone that was here when we first came onto the floor has been discharged. Actually, I know there are still some children that have been here longer than Frankie, but it just feels like it's been so long since we first walked through those doors.

Michael Patrick was discharged today. It was wonderful to see how happy his family was for him. He was dressed up in his Spiderman outfit (very fitting for this little superhero) as he walked down the hallway getting his confetti parade. I've taken to video taping the discharges and Frank takes pictures with our digital camera. I wish I had a digital video camera, but our 8mm does fine, too.

We did get to see some familiar faces today... Ashley and her mom stopped in, and Frankie finally blew Ashley some kisses!! And, we got a surprise visit from Mary (Michael was standing in the "clean room"). She brought Frankie a little gift (THANKS, MARY!!), and we got to say "hi" to Michael, since our door faces the clean room. Both Ashley and Michael look awesome! It's so wonderful to see smiles and hear the success stories. We needed it.

In case I've never explained it, the clean room is an area just before you enter the unit. If you don't have shoes that have never touched outside of the unit, you have to put on blue booties. After you put on your "clean" shoes or booties, you must wash your hands before entering the unit. You can't touch the handles on the door entering the clean room or the door entering the unit. You have to push a big blue button that opens the door for you. But you can't use your newly washed hands to push that button, so, you hit the button with your elbow. Only one door in the clean room can be open at a time. This is to ensure no "dirt" flows into the clean room and then into the unit.

We also got a call from Kate's mom. It was great to hear from her and to know that Kate's doing so much better as an outpatient, not that she wasn't doing awesome in here, it's just different. Kate's more active (is that possible???) and sleeping better through the nights. But, we have to attribute that to the lack of constant blood pressure taking, the 2am blood draws, the "air in line or occlusion" beeps that occur nightly!!! Ahhh... peaceful sleep... sweet dreams, Princess!

Oooh, I forgot! Yesterday, Frankie was allowed to go off of the unit for a little while. So, we walked out of the unit to the elevators. There's a big fish tank right there, so we thought that he would really enjoy that. I was EXTREMELY nervous bringing him out there, and wasn't sure how he would react. But, he kept his mask on and didn't really touch anything, so my heart beat slowed down a little after a while.

We tested the waters even further and walked to the clinic. And, Frankie walked all the way there himself. We basically had to walk across the fifth floor to the "bridge" that connects the hospital to the clinic. Then we rode the elevator down to the first floor. There's an even bigger fish tank there, but more importantly, there were two train tracks for Frankie to play with. Fortunately, we brought Frankie's Thomas engine! And, since it was late enough, no one was around, so MUCH less for me to worry about germs and the like. The hardest thing to do was to take him away from the train tracks. But, without too much fuss, he walked back to the elevators, then all the way back to the unit. We saw Nikki, one of the nurse assistants, leaving for the night as we were headed back. We would have done the same thing tonight, but the timing of his IV meds didn't really allow for that... maybe tomorrow.

Saturday, August 13: Day +44 - 8:00pm
Hi, All... I just wanted to write something quick to let you know that I've posted some new pictures on the "Our Diary" page. So, you can click here, or navigate to that page when you're ready.

Frankie is continuing to show really good progress. Over the past week we have weaned him off of the IV blood pressure med, and on day 6 of being off of it, his blood pressures are still good. He's still got the patch and three oral meds he takes for that, but the IV med was what kept us inpatient.

We had our first day out on Wednesday and then took Frankie out again yesterday and today for a little walk. He has been doing great walking on his own and keeping the big green mask on. They're heavier, so in the heat and humidity, Frank & I were extremely surprised that he never tried to pull it off. This is very reassuring, because he'll have to wear one everywhere we take him once he is outpatient for at least another year. Remember, his immune system is like a newborn baby, so he is at risk with any free-floating germies out there (you know, beyond the doors of 5200).

Well, this was just a quick update... Mema and Poppy are coming to visit and I have to get back to the apartment to clean before they get there! :) It's basically become our dumping ground since Frank & I don't really spend any additional time there (just a stop to shower and sleep for the odd man out).

Special thanks... The Spring Glen School sent Frankie a bunch of "Get Well" cards, and we wanted to let the children know that we did receive them, and thank you so much for making all three of us smile! We send you all BIG HUGS!

And, we can't say it enough... our home towns have been so incredibly supportive. We receive tons of emails, good thoughts, wishes and prayers across the miles. Thank you! We can't wait to come home!!! XOXOXO

Sunday, August 14: Day +45 - 8:00pm
Today was a good day for Frankie. His blood pressure continues to be stable, the CMV is going away slowly, and all of his other important numbers look good. The doctors are really happy with his progress. He's also been able to go out on passes each day, but we're still a little too nervous to venture away from the hospital.

Today, Frank's dad flew in to visit for the week. Frank's mom was also supposed to fly in, but she was sneezing yesterday, and wanted to get checked out by a doctor before visiting since any signs of colds must be considered risky for Frankie. If everything checks out okay, she'll be here by the end of the week.

Frankie was so happy to see his grandpa. He wriggled right off of my lap when he saw him in the hallway today. We were in the Children's Connection chatting with other parents when Frank popped his head in. Once we had the "go ahead" all three of us went for a walk. It was so hot and humid out today, even at 3:30pm! But, Frankie was a trooper! He never pulled his mask off, which was very impressive. The green masks are so heavy, I can only imagine how hot it was inside that mask.

So, it's my night tonight, and Frankie fell asleep around 7:30pm. Unfortunately, I'll have to wake him up around 9:00 to give him his oral medications. This won't be a very fun awakening, as I'm sure you can imagine.

This evening, back home, there was an ice cream social at Kelly's Kone Konnection. My dad called to let me know that it was a lot of fun and seemed to be very successful. I'll get the scoop (sorry for the pun) tomorrow from my sister.

I wanted to say thanks to Kelly's Kone Konnection for sponsoring the fund raiser. There are more people I need to thank, but my father-in-law has the list, and I can't remember what he told me! :) Sorry!!!

Yesterday, Frank's side of the family had a HUGE multi-family tag sale in North Haven. THANK YOUS & HUGS to the Onofrio's! I only wish I could have been there to snag up some good treasures!

Also yesterday, Frank's aunt Andrea ran a car wash at the North Haven MacDonald's. They told me that it was the HOTTEST day of the year. And, even if it wasn't, I'm sure it felt like it was!!! I'm thinking the luckiest person was the one holding the hose. Thanks to everyone who showed up to support Frankie!!

One more note of thanks... Thanks go to all of the wonderful people that work with Frank's mom, Cheryl! We received the package this week. Thank you for your continued support, well wishes and prayers.

Actually, that last sentence should go out to everyone!!!

Please extend your thoughts and prayers to all of the children who have been on this unit and/or in the PICU and have touched our lives. These children are the true heroes of today. They deserve all of the love, hugs and laughter we can provide them, not to mention our prayers. There's more children that I haven't mentioned or have links for... namely, Emma Grace (Frankie's next door neighbor), Queen Maddie, Joseph, Adam (the newbie on the block), Yusef, Haley, Christina, Harrison, Zoey, Noar, Noelle, and Keturah.

Monday, August 15: Day +46 - 11:00pm
WE'VE BEEN DISCHARGED!!! What does that mean exactly??? Well, all three of us are back in our North Carolina apartment. And, we're going to be very busy getting into a new schedule as both Frank and I have to "time" all of the oral meds and IV meds. In addition to timing all of that, we have to go to clinic daily. And, I've heard clinic visits can be as quick as 30 minutes and as long as eight hours!! Clinic is also required Saturdays and Sundays!! No rest for the wicked!

Frankie's doing very well, and didn't skip a beat when he ran into the apartment. He ran straight for his Thomas the Tank Engine train set. It took us a while to get situated. But by the time we got home, we only had a few minutes before the nurse came by to train us on how to use the IV pumps. While she was here, we set up all of his pumps (four in all) for the night.

Frankie has to be hooked up to four pumps every night, and three pumps in the morning. Two of the pumps run for twelve hours (overnight) and need to be started around 8:00pm to time the next med when Frankie wakes up. In addition to the pumps, he still takes six oral meds in the morning, three in the afternoon and seven in the evening. It's quite the event to try and get him to take all of them, but we manage.

Tomorrow morning, another nurse will stop at 8:30am to train us on drawing his blood for lab work and how to "push" one of the IV meds. Basically, our apartment has turned into a mini-pharmacy/hospital. Frank and I have taken up second jobs as nurses to our son. It's very rewarding. :)

After the nurse comes and finishes training us, we have to head over to clinic, drop of the blood for the labs to see if Frankie needs any additional IV meds that we don't have at home. They will also check his temperature, blood pressure and make sure everything else looks okay.

This will be our routine for the coming months. However, we don't get a nurse every day, training us. After tomorrow, it will be just Frank and I taking care of Frankie in the apartment. Thankfully, we're quick studies, and have been doing some of the blood draws, cap changes, dressing changes for some time now. But, it's SOOO much more nerve racking now that we're home and there's no nurse call button!!!

To all of the nurses on the PBMTU, especially those who tried desperately to make Frankie dance, blow kisses, and play peek-a-boo, we love you all and cannot thank you enough! You made our stay in room 5205 bearable! :) HUGS & KISSES!!

Thursday, August 18: Day +49 - 8:30pm
Well, the past few days have flown right by! On Tuesday, we had a four-hour clinic visit where Frankie only needed his GCSF (Cell Growth Factor). Then, on Wednesday, we had another four-hour clinic visit where he needed a few infusions. We also saw his primary doctor, Dr. Szabolcs.

Frankie is doing very well out of the unit. He's so incredibly active, that it's hard to have him hooked up twice a day to the Bard Pumps. We don't have a med pole we can push around the apartment, so we basically hold onto the pumps and follow him around for two hours. In the mornings, we time it with getting prepared for clinic, so when he's there, and in his stoller, we can control him a bit better. At night, we do laps around the apartment.

We bought Frankie a new stroller. His old stroller had basically been on its last wheel, and it was definitely time to rethink the size of its replacement. So, we don't have two children, but we bought a double stroller!! There is method to our madness... we have to take so much stuff with us to clinic each day, that it just made more sense. So, Frankie's got the Cadillac of strollers!! We were going to call up Xzibit to see if he could "Pimp" it out, but I wasn't keen on running lights... ha ha ha.

Today's visit to the clinic was only two hours. He did need another dose of GCSF, but they have trained us on how to use the pumps, so it only made sense for them to hand this task over to us as well. Sometimes, that's all Frankie will need, and making a trip to the clinic just for that wouldn't be "worth" it.

We're still trying to get into a routine, but it seems that the earliest we can get to clinic is roughly 10am. It just takes forever and a day to give Frankie his oral medications in the morning. To give him five syringes takes me almost an hour. And, it's not like the total amount would even fill a Dixie cup, but he just doesn't liked to be forced to do anything... hmmmm.... apple doesn't fall far, now does it???

Oh, and in case I haven't said it enough.... WE MISS OUR NURSES!!!!

Saturday, August 20: Day +51 - 9:30pm
Not much has really changed since I last wrote. We actually had the day off today from clinic, so we got to stay in the apartment ALL DAY LONG! ugh... I never knew how confining that could be. Frank & I actually went out and ordered pizza, waited for it to get cooked and then brought it home for dinner. That was around 6:30pm, and was the first time I was outside all day.

A little note regarding what Frankie can and cannot eat. He has to eat food that is completely cooked. And, he must eat it within an hour of being cooked. After that, the food is at risk of growing bacteria. He cannot eat any fresh fruit or vegetables for at least another year. He can eat canned and frozen, but we still have to be careful about those foods as well. He can eat foods that are individually packed (potato chips, cookies, jarred baby food), but these too have to be consumed within one hour. Needless to say (then why say it???) we end up wasting a lot of food or end up eating whatever Frankie doesn't finish. Unfortunately, right now, he's not eating much. We have been told from older children that during recovery from chemotherapy, foods don't taste the same. It's possible that Frankie doesn't taste anything at all when he eats, thereby making food undesirable. Plus, he's still getting his nutrition through his nightly 12-hour IV drip we administer at the apartment. I usually hook him up around 8pm so it runs while he sleeps.

Aside: Here in North Carolina, it is a state law for restaurants to display their FDA rating in plain view when entering their establishment. This rating basically tells patrons how clean the cooking environment is. Frankie can have foods at any restaurant with a rating of 92 or better. FYI... the pizza was made at a restaurant with a 93.5 rating. Sometimes, you have to wonder if the establishments ever have a below 92 day...

Oh, and my headache is back. This is day two, and at night, so my head's not hurting as much as it was this morning. My right shoulder blade hurts, and I wish I had the opportunity to go to the massage-a-thon last night in Branford. Apparently, it was quite the night. My father and my sister both had 1-hour massages! Lucky them, right??!! I may sneak back to 5200 on Monday night to sign up for a 15-minute massage!!

I think there was also a tag sale today hosted by the Farina family in North Haven (Hartford Turnpike). The children have been running a lemonade stand each work week during the summer to raise money for Frankie. I had just found out about it late last night while I was checking my email. Thanks go out to the Farina's for their continued support!!

Oh, and Frank has reminded me to update the Pictures page with Frankie's discharge parade pictures. I have to download the pics from the camera then edit them on my laptop... everything takes time (not to mention energy)... I will update, I just cannot guarantee when that will happen! Okay... time for bed... Good night, all!

Wednesday, August 25: Day +55 - 9:30pm
Good evening! We're just hanging out watching some TV while I'm updating the web site. We had a clinic visit this morning that lasted five hours. It was okay once we fixed the bed. When we're at clinic, we're put in a room with one bed and one chair. The bed is basically where Frankie hangs out while we play DVDs on my laptop to keep him entertained. It's important for his comfort that the head of the bed can be inclined.

The clinic visit went well. We're stopping one of the PO (oral) meds. It's one he only takes once a day, so it doesn't really make too much of a dent, especially since they added another PO med that will be given twice a day. This oral med, cyclosporine, is being prescribed to replace the IV med we give him each morning and night. The bad thing with this oral med, we're told, is that the taste is like fish oil, and a lot of children have a really difficult time keeping the med down.

Frankie only needed two infusions today (Cytogam and Diclusimab)... sorry, I don't have my nurses to correct my spelling. Once those were complete, we saw Frankie's doctor, Dr. Szabolcs. He's very happy with Frankie's progress. His WBC was low, so we are scheduled to have GCSF tonight.

So, this evening, when we got home, Frank & I left Frankie with Mema and Poppy (Frank's parents) to do a little shopping and go out for an early dinner. We couldn't do any med preparations until we got our delivery from Duke Infusion (a company that works with Duke to provide our IV meds and supplies while we're outpatient). After dinner, we went out for ice cream... bad idea, I'm still feeling like I'm squeezed into my clothes.

When we got back from our "outing," I was leery of trying to give Frankie the new "oily" PO. I was afraid he'd vomit up the medicine or just not take it at all (venom spitter). Fortunately, he only resisted at the beginning, and I was able to get him to take the med. But, I think this was an anomaly. I think that since Frankie's taste buds aren't quite working the same since the chemo, we're basically buying time.

We didn't get our shipment from DI until 6:30pm, and even then, we were missing our GCSF. There was lack of communication between Duke and DI, but nothing serious. I'm just glad both Frank & I pay attention during our clinic visits. At 8:30pm, the GCSF arrived and I was able to hook it up to Frankie, but had to put him to bed with it running. The drip only lasts about an hour, so it sucks to have to put him to bed and then try to disconnect the IV while he's asleep. Oh well...

It's now 9:30pm on Wednesday night, and I'm stuffed (still! ugh, I hate that feeling) and tired for no reason. I really want a coffee, but I'm thinking that may be bad idea number two! YIKES!

On a more serious note, Baby Emma (one of Frankie's next door neighbors on 5200) has been sent home this week (Charlotte, NC). Apparently, the doctors here at Duke felt they couldn't do any more for her. I believe she is at a local Charlotte hospital being taken care of in their ICU. Please pray for a miracle for this precious little girl. I've added her web site to the right.

Please also continue to pray for all of the little children that are being treated or waiting in line. So many children here are suffering from horrible diseases that I can't even pronounce. They are the true heroes of this world. They and their families continue to inspire me with their strength, determination, faith, and heart. They smile despite the hurt and the pain. I could only hope to be half as strong.

Sunday, August 28: Day +59 - 9:00pm
Since we've been outpatient, not much changes in our lives from day to day. I could bore most of you with little stories of how we spent our hours at clinic or at the apartment, but I'm thinking that wouldn't rank up there for the most interesting reads of the day.

Frankie has become less and less trusting of sitting on my lap. That's how I have to administer the oral medications, so he picked up on that very quick. As soon as I try to get him into position, he freaks out and every inch of his body moves in opposite directions. It's quite the site, I must say. And, if I can get him to settle down enough to put the syringe in his mouth, his mastery of regurgitation is unparalleled.

Right now, he's so over tired, he won't go to bed. Every time we try to settle him down, as soon as we leave the bedroom he stands up and starts screaming and crying all over again. Now, back home, we wouldn't have paid much mind to it, but we're in an apartment now, and I can only imagine that we will not be winning any Apartment Neighbor of the Year Award.

As for Frankie's progress, he's doing very well. He received his first blood transfusion since being discharged. His hemoglobin counts were below his cut off, so he got more on Friday. That made our clinic visit on Friday a bit long. The drip takes just over 3 hours, and the blood didn't get to the clinic until 1:30. We had been there since 10am, mind you.

He hasn't needed platelets since discharge, either. This is a very good sign that he is making them on his own. The longer time passes between his need for hemoglobin or platelets, the better. These are all positive signs that his immune system is getting stronger and that the transplanted cord blood is doing its work.

PS... I wanted to say "thank you" to Rachel and Erika. We did get the Dr. Elmo a little bit ago. But, I couldn't bring it into the unit (has to be washable, and I wasn't sure). So, Frankie didn't see Dr. Elmo until we were back in the apartment. He's actually turning more interest lately in Cookie Monster, so that was a hit, too. Toby reminded me today, so I wanted to let you know! THANKS!!!

Today was a nice day for me, especially. Mary (Michael's mom), Jean (Michael Patrick's mom) and I went out to lunch today... like normal people do!! It was great to get out pretend that life is ho-hum and run-of-the-mill. Of course, we talked about our children and families the entire time, but it felt more "normal". We're going to try to do this more often since there were a bunch of mom's that couldn't make it out today. But, I have to thank my husband, too, for letting me take the break from our daily reality. We are extremely lucky to both be here to take care of Frankie... not for lunch dates, but for sanity, peace of mind, and continued support.

Frank, I don't tell you enough... You are my best friend. I love you.

Wednesday, August 31: Day +62 - 5:00pm
A couple of things to note on fund raising...

There is a Mohegun Sun Bus trip scheduled for September 10th. We still need people to sign up for the bus trip to be successful. I'm not sure if more people signed up at the meeting on Monday, but I just wanted to remind people that the $30.00 bus ticket includes the buffet and two pull-tabs.

The second fund raiser that I need to mention is a coupon for a Middletown restaurant, Typhoon. It's a Thai food restaurant located on Main Street in Middletown. And for the month of September, they are donating 10% of your meal check to Frankie's COTA fund. You need to bring in the coupon for this to work during the designated lunch and dinner times. Again, it's just for the month of September. Please click on this link for the coupon.

And, the third reminder for fund raisers is the dinner at Geppi's in New Haven. I'm not sure how many tickets are left for the dinner. Also, I think there will be some sort of slide show or presentation of Frankie at the dinner. I'm hoping to get a copy of this (hint hint, Dave) as we aren't able to attend any of the fund raisers while in North Carolina.

For all of these updates, please see the Fundraising Page for more information and contacts.

Also, in case I didn't mention it before, congratulations to the Ferina family for making their goal of $1000.00 to raise on Frankie's behalf. Thank you so much!!! I heard it was quite the success story.

Thank you, Norma for your wonderful gifts. We did receive them, but we've been having trouble with our internet access, so I haven't been able to update the web site or email anyone as easily and often as I'm used to or would like.

Congratulations to Frank's cousin, Tina and her boyfriend, John! They just got engaged!!! Woo Hoo! Big hugs from us down here, guys!!!

As for Frank, Frankie and myself, we had a crazy morning. I'm not sure what went wrong today, but we were WAY off schedule. Normally, we're able to stop the over-night drip, draw his blood, drop that off, set up his morning drip, administer his oral meds and be at the clinic by 10am.

Well, we were there by 10am, but it wasn't pretty. The over-night drip was started late last night (due to a screw up on my part), so it didn't stop until after 8am this morning. I have to wait until that infusion is complete before I can draw his blood. And, instead of dropping off the blood ahead of time, we decided to go to the clinic as soon as we could, since things started late. At 9:30am, we were on our way to the clinic. About two minutes from the hospital garage, Frankie started vomitting in the car (in his mask). And, since this has never happened before, we didn't have a spare mask with us. He can't be without a mask outside of the apartment or the room at the clinic... So, we stopped by the hospital pharmacy, picked up another mask, parked the car and finally got to the clinic. But, like I said, it was ugly getting there.

Luckily, they started his infusions soon after our arrival. Frankie even got a session with his speech therapist, Barron. And, even though we were there five hours, it didn't feel like it. We got the results from his lab draws before we left, and he's doing really well. Even though his WBC was below his cut-off mark, we didn't have to give him his GCSF to boost it since his ANC was over 4000. Some of these acronyms may sound foreign to most, but rest assured, Frankie's headed in the right direction.