Saturday, December 2, 2006

On Thursday, Frankie started the 'not eating' thing again. So, I called the clinic and spoke with Carolyn (Frankie's NP) to let her know. We figured we start up another course of the antibiotic, so she called in a new prescription. At around 11:00 am, I put Frankie down for a nap. Around 11:30, when he clearly was not going to sleep, I got him down from his bedroom and noticed that he was feeling warm.

After taking his temperature in both ears (100 and 101.3), I waited 5 minutes and retook. Sometimes our thermometer has crazy reads, so I just wanted to make sure. On the second take, both temps increased (101 and 102). I called Frank at work to let him know and then called Carolyn. As I was on the phone with her, I was multi-tasking by packing an overnight bag. Just getting prepared, you know...

By the time we got to clinic, the fever subsided, but no one wanted to take any chances. They drew levels, cultures and we waited to see what his ANC was. If his ANC was okay, we'd probably just stay one night to make sure the fever didn't return. Unfortunately, that wasn't the case... His ANC came back at 380 - Frankie was officially neutropenic.... automatic admittance to Hotel Yale for the weekend.

So, we're still here. I was really optimistic that we'd be going home today, but his ANC dropped even further to 100 (this morning's levels). I'm not sure what the game plan is, but I know we're here at least one more night. So far, the cultures haven't returned anything, so we can only assume it's the ulcer that's causing all of the issues... but the two antibiotics may be causing the neutropenia. So, we stopped one today. And, I hope that that will help the ANC rise.

Frank, Frankie and I are climbing the walls this time. I don't know what it is about today, but the more I stare at the clock, the slower it seems to go. Frankie his bouncing all over the room, bless his little soul. He's just so used to the freedom of moving around our house, it's very difficult to limit him to one room... much less putting two more people in it!!

Anyway, I just wanted to update everyone on Frankie. He's doing fine, other than the ANC. He is eating a little bit and drinking, but everything he eats has to be pureed... no solid foods for at least another 10 days, to allow the ulcer to heal.

I hope this update finds all of our family and friends well. I can't believe it's December already! It sneaks up on me every time. I haven't had a chance to do any holiday shopping, either. I'm soooo far behind.

Take care, much love, many hugs and prayers,
Cynthia, Frank & Frankie

Tuesday, December 5, 2006

We've been discharged (again). Frankie is doing okay, but we have some restrictions at home to follow.

One, he can only have pureed food until his ulcer completely heals. That could be a few weeks. And, for my ravenous eater, it's becoming very difficult to keep his belly full on soft foods. Two, he's still neutropenic, so any food we give him has to be made and eaten within an hour. Three, we've discovered we need to stay away from dairy right now (vomitous maximus). Four, no one in the house that is remotely showing any signs of a runny nose, sniffle, cough, etc... Sorry, folks, I just don't want to be in the hospital again this year... okay?!? I'm sure everyone can understand that.

For those of you who may have seen it, caught glimpses, or whatever, yes, Frankie and I were on the local CBS news last week. A reporter, Susan Raff, came to the house and interviewed me regarding Stem Cell research. Connecticut just approved more funds to go toward Embryonic Stem Cell research. But, since Frankie was an umbilical cord blood recipient, I'm not sure our story was really relevant to what she wanted (controversy angle). In any event, Frankie looked great hopping on his trampoline and close-up pictures of him watching Thomas. I would have put the clip on the site, but the file is too large and my upload of it keeps crashing. Plus, I'm not sure if I have "permission" to do that anyway.

Other than our repeat visit to Yale, not much has been going on with us... really, nothing. I haven't had a chance to do Frankie's picture for our Christmas cards, I haven't even thought about decorating the house, much less do any shopping. My best friend during this holiday season will be my laptop. I am a whiz at ordering on-line. But, with a smaller budget this year, it's definitely going to be "the thought that counts".

Regardless, I think we'll be adopting Cari and Matt's (Jessie's parents) plan this year. Christmas and the holidays should definitely center around family and not the gifts. Somewhere along the way, I think we, and people in general, have lost sight of that. Do I want a Playstation 3?? Yeah, but I'm not about to spend $600.00 (ok, at least not right now). There are stories of people shooting and robbing others just to get this "toy". What ever happened to peace and joy??

I tell you what... over the past two years, I've truly learned what's important in life. And, that's family. Cari and Matt are completely correct... our children would be more happy with playing with family and friends and will carry the memory of those moments longer than the split-second joy of a plastic, noisy toy. I can tell you maybe two toys I ever wanted as a child that I either got or didn't get. But I can tell you hundreds, if not thousands, of funny, happy moments with my family as a child. I had a great childhood. That's what I want to pass down to Frankie, laughter and love.

If I don't get a chance to call her, my mother's birthday is coming up (December 7th). And, she'll be returning from Prague to her home in England on that day. She and my dad are on a nice vacation, and I really hope they're enjoying themselves. The reason I write this is I know our family and friends read this in England (my mother is nowhere near computer literate), so I hope they'll tell her that I wrote about her and wished her a HAPPY BIRTHDAY!!! Mum and Dad, I love you both so very much.

Saturday, December 9, 2006

I'll give you one guess as to where we are right now...

Today, Frankie was admitted (again) to Yale. When he woke up from his nap today around 11:00am, he had a fever of 104.6. We think our thermometer may be off; but, when Frank & I checked our temperatures, we were normal, so even if the thermometer is 2 degrees off, he still has a temperature, and we still have to go to the hospital... Yale ER, here we come.

So, we got to the hospital around noon. And, we were in the room by 3pm, so not bad this time around. However, once we got to the ER, Frankie showed no signs of fever, and we brought our thermometer to check, and ours read 102.1, so there is some major discrepancy. So, time to purchase a more accurate thermometer.

Are we admitted for no reason?? I really don't think so. Tonight, Frankie started to get really ornery and per Frank, is not taking his evening meds at all. We still think something is lingering in his mouth, but no one can see anything (except the ulcer which seems to be healing albeit slowly).

I'm home now (8pm) and trying to do some laundry, tidy up and make sure Frank has clothes for work on Monday. However, things seem rough at Yale, so it's entirely possible I might be driving there later tonight to help out.

The thing that really sucks about all of this is that we haven't had a chance to do anything about the holidays this year. Every weekend, we're either at Yale, or doing everything in our power not to be at the hospital. I am so close to finishing Frankie's playroom. I just have to wipe down the walls, prime and paint. Soooo close....

On top of that, I feel like I've been a horrible friend to my fellow 5200-ers. I feel so out of touch with everyone. We're just trying to keep everything together here, and I'm dropping the ball everywhere else. And, the latest loss of Benjy and Olivia has totally hit me hard. My prayers and thoughts go out to their friends and families... and to all of the wonderful people we have met along the way who are hurting, stressed, healing, or frustrated. This time of year emotions run hard and deep... surrounded by family and friends, you can't help but think of all of the little angels that left this world way too soon.

I am so far behind on emails, but please know that I am saying my prayers and sending good, happy thoughts to all of you.

Good night, take care, love and hugs,
Cynthia

Friday, December 15, 2006

Sorry, I forgot to update the other day... Frankie was discharged on Monday. We immediately purchased a new thermometer. But, our visit to Yale was not without drama.

On Sunday night, about 6:30pm Frank, Frank's dad and I had just finished eating (in Frankie's room). Per my request, Frank went to get three cups of hot water for tea. When Frank returned, I took my hot water and put it on the window sill. With my back turned, Frankie grabbed the hot water (190 degrees, by the way), and spilled it on himself.

Short story... Frankie suffered second degree burns on his left arm. Two huge blisters developed by 8pm that evening. Plastic Surgery was called to make sure it wasn't anything serious, which thankfully, it wasn't. But, they did suggest a tetnus shot, just to be on the safe side.

Within seconds of Frankie spilling the hot water, he was screaming. It was a scream I had never heard before, and hope to God I will never hear again. Seconds after that, all of the nurses and PCA's on the floor were in our room, helping to ease his pain. I was holding him and changing the ice water towels on his arm while he screamed. He was given morphine for the pain and then Oxycodone later to ease the pain more while he slept.

The blisters were pierced by Physical Therapy the next morning and his wounds were redressed. I change them twice a day, and they are healing well. The wounds do not seem to bother him until I'm trying to change the dressing. Then he picks at the gauze like it's a toy.

I cannot express to you the tremendous amount of guilt I have over this incident. So much so, that I was afraid to write about it on this site. My son is quick... wicked fast. And, thick to learn from this event, because he continued to grab for cups (all of them cold drinksfrom that moment on).

He is doing fine now. He's actually doing amazingly well in all of his therapy sessions this week. I'm so impressed with his comprehension. I just hope for a day where his expressive will improve.

Sunday, December 24, 2006, CHRISTMAS EVE

Hi, everyone! First let me say "Happy Holidays" to everyone who still reads this site. Whatever your religious faith, I wish you joy, happiness and a healthy Holiday season.

Update on Frankie... Well, he's not doing so great. But, on the plus side, we haven't been admitted to the hospital (yet... knocking on wood).

He's not eating. I would surmise that he's probably eating about 300 calories in pureed baby food a day. This is drastically causing him to drop weight, thankfully, he had some to spare. But, it's still not a good thing. He drinks, but he won't drink any high calorie drinks, so all I can get in him is watered down juice. I don't really want to give him juice straight, but I may have to resort to it.

He's vomited four times in the last three days. We really don't know what's causing that. I think he may have a stomach bug, at least that's what I hope. I've raised the question regarding GvHD of the gut, but that doesn't seem to be a concern at this moment.

His FK level, however, is very low (FK=5), so we've increased the dose, again. His low FK level might be responsible for the GvHD rash that is spreading over his body, but I've been able to keep it at a mild red lacy rash, instead of the full-blown redman look he can get.... another reason I brought up GvHD of the gut to the doctors.

His attitude/personality is a little reserved lately, too. But, that could be because he doesn't eat and has been throwing up. Luckily no fevers to speak of (again, knocking on wood). He actually appears bored. So, last night, we bundled him up and walked around our neighborhood to show him the Christmas lights. I don't know if it really impressed him, but I think it was good to get him outside.

So, what to do this holiday weekend?? Well, we had a couple of parties we couldn't go to (major upset there). And, we're still debating on going to both sets of families tomorrow. There are a lot of little kids and I just don't like risking anything, if I don't have to. But, on the other hand, I think it would really cheer Frankie up to see other people other than Frank and myself.

Update on me and Frank: Not much other than just trying to get the playroom done by Christmas morning. I just finished my last bit of painting of the window trim and will most likely have to do some touch up painting on the walls as the tape around the windows is peeling the paint off the walls. Go figure... it's a vicious circle. But, I'm hoping to clean and organize that room tonight so Frankie will wake up and see he has his room back!

I'm also starting to put my resume back out there. Even though Frankie's not 100% and our visits to the hospital are more frequent these past few months, we need the money. So many families had to go back to work sooner than I have, and now I understand how difficult it must have been for them to do so. You want to be there, physically there for your child, but if you can't keep a roof over your head and food on the table... Life is all about choices.

Love to you all, many good thoughts and prayers to our friends and families across the miles!
Thank you for your love and support over the past two years.
Cynthia, Frank & Frankie

Monday, December 25, 2006, CHRISTMAS DAY

Saying a prayer for all of the little children we will miss this holiday season. They fought the good fight and now are enjoying a different kind of life, one without pain, without limitations. We love and miss you. Peace and comfort to their families during this very difficult time. God Bless.

Friday, December 29, 2006

Yesterday, when I took Frankie to clinic, there was considerable concern for his weight loss and failure to eat/drink. He had lost over 4 pounds in under two weeks. He had been refusing food for a few days and dropped the amount of fluids he would drink since Saturday. On Thursday, before Christmas, he started vomiting and would vomit pretty much every other day, and roughly twice a day when he did. So, it wasn't good.

He had become extremely lethargic, not nearly his bubbly self. His naps were longer and he would sleep longer at night. For a kid who is hard to keep still, I would find him laying on the floor or couch. And, when Frank would come home from work, he was content snuggling on the couch with his dad. Normally, we would love this behavior... the snuggly aspect. But, we knew that just wasn't Frankie, and that something was clearly wrong.

The irony of clinic yesterday was that he started to eat while we were waiting for the room to be prepared for our admitting. And, of all things, he started to eat Cheetos. He ate the whole bag. I think the fluids he was getting were making him feel better. But, the more impressive site was to see him bite down on a solid food, chew it, swallow it and keep it down. My sister, Marie, had brought him the Cheetos just in case... and I guess that worked out! But, we still got admitted.

And, as we wouldn't want to disappoint, there has been some drama while here. While at clinic, and trying to change his diaper, the needle in his port ripped out of his chest. It's not a huge deal, but he had to get reaccessed, and he absolutely hates that. Still, the drama didn't end there...

At around 6pm, in our room on the seventh floor, Frankie's needle popped out slightly from the port. It wasn't enough for us to tell, but for about an hour the fluids were being administered into his skin, not into his port (veins)... subcutaneously, as they tell us. So, when Laura, Frankie's nurse, showed us the result, I thought I was going to be sick to my stomach. The fluids had filled his chest around the port so it looked like he swallowed a baseball. Honestly, it was gross. But, they said it wasn't a huge concern because it was just sugar water, and it would reabsorb into his system. By this morning, the bulge was gone.

So, to make sure nothing major is going on inside Frankie (gut GvHD), he is scheduled for an endoscopy and colonoscopy today, sometime between 2 and 4pm. He'll be sedated for this procedure, obviously, and so now we're just hanging out waiting for that to happen. I'm not sure how long we'll be here at Hotel Yale, but I'm hoping to be out for New Year's Eve.

I'll update when we find out the results of the procedure. In the meantime, thanks for reading, sending good thoughts, prayers our way!