Our community grows

On Friday afternoon, Kevin stopped by with some baby shower gifts he's been holding on to since early August (Thanks!), and an envelope from the staff...WOW. How can I express my thanks? As many people know, Bay Point is a big part of my life and I am very loyal to my school. Not only am I loyal since I am an alumni, but because of all the wonderful friends and colleagues I have there or have made there. I am always fighting for a better Bay Point because I care so much about the community and clearly, you all have shown that you care a lot for me as well. Thank you, thank you, thank you. Now...you might have to wait a little longer for that computer to work! :)

Today, Chris, Carina and I went to the benefit at My Little Play Town (which is owned by a current and a former Bay Point Elem teacher). What a fun place! I can't wait to check it out with Dante when he is healthier. Caroline and Jennifer organized a great event and had a super turnout. Thanks so much to everyone who attended and bid on some amazing items. It was nice to get out and see some old friends and meet some new people who I have only ever met online! Caroline called us tonight and told us that the benefit greatly exceeded her goal which has just left us speechless.

Before this turn of events in our lives, I had the assumption that many of us are just numb to bad news and see most things we hear of as "things that happen to other people." You hear so many bad stories in the news that sometimes you have to just move on and not dwell on them to keep your sanity. So many people seemed caught up in their own lives and not concerned with others. Well, I can tell you that I was wrong. We have experienced the most incredible outpouring of genuine support from good friends, old friends, neighbors, colleagues and strangers. Even those who are struggling themselves have offered their assistance in any way they can. I have always believed in the power of a community and knew that I was part of one, but I had no idea what that truly meant until now. I don't know what else to say except thank you from our entire family.

Dante is still doing OK. When we went to the doctor on Friday, his ANC was 5300 - thanks in part to the GCSF injections he has been receiving. We also said good-bye to Dr. Aung, who is off to California and research on brain tumors. We will all miss her, but wish her well! Dante drew a picture just for her, but he liked it so much that he didn't want to let go of it!

He has become very edgy the last couple of days - super happy one minute, and then yelling the next. We think that he must not be feeling so hot and he doesn't understand why, in addition to the fact that he can't tell us what is wrong. He just seems to get angry quickly or upset about little things. We have started to give him options for everything, so that he feels some sense of control over his life. We have also tried to let him do things for himself so that he feels empowered. Maybe we are over thinking it, but he is definitely not his usual self, although he is 2, right? I find that we seem to be living day to day around here, as we never really know what to expect from our little man.

Sometime before Oct. 11th (the start of round 3), we are going to have a bone scan and CT scan to check on Dante's progress. We know that the tumors in his pelvis have shrunk, we are just hoping that the rest have shrunk or disappeared as well. We also have to have a hearing test, as one of the side effects of his chemo drugs is hearing loss. We had a baseline test before he started, so this is to check and see if it has been effected so far. Think about that ice cream again everyone, OK?


One more note- our lives have become pretty exhausting. Most nights after Dante is asleep we try to relax a little bit, get Carina to sleep or get a few things done around the house. If we don't update the blog daily - please don't panic! It is probably because nothing of note has happened or we are just too tired! It has been a great outlet for Chris and I to be able to share this journey with so many people and allowed us to focus on our family instead of making many phone calls and emails. Thanks for tuning in and stay tuned for good news in our future!

Kip and Carina at My Little Play Town.

Escape!

Dante must be feeling better because he is spazzing out!

Some of you may recall a Saturday Night Live skit called "Geek, Dork, or Spaz" wherein the contestants of a game show having the aforementioned title, would attempt to identify which category the "example" guest fell into. Until recently, Dante usually fell into the first category, but lately he has definitely branched out!

I'm pretty sure it's just his excitement over being at home, and in familiar surroundings. He has become increasingly observant and verbal. Very interested in communicating all sorts of observations and experiences throughout the day. At night, while we're getting ready for bedtime, he will recount all sorts of things from earlier in the day; a daily recap of sorts. It's really cute.

He is also getting much more comfortable with the whole cancer experience in general. He likes to help out during regular procedures like Dr. visits and exams. He holds out his line so the nurses can access his port, and this morning he even wiped off the end of his insuflon (mini-port) so I could give him his GCSF injection. He did really well during that, and was very excited to recall the process of "Daddy gave-a medicine a-Dante, and Dante a-wipe oval band-aid!"

He is generally in good spirits, although he's been skipping his afternoon nap and that makes the evenings a bit volatile, but also an early bedtime!

Tuesday we decided to get out of the house while the gettin' was good (ANC @ 1100). We piled the whole crew into the Swedish Mullet and made our way over to Lowry Park Zoo. What is up with that place?! Is it ever less than 97 degrees there? No wonder the animals are always sleeping.... Anyway, we arrived and made our way in, to the repeated request of "Elephan-nan-nan. Elephan-nan-nan." We went past the first few areas but Dante was dead set on seeing some elephants, so we pushed on past the other moms and strollers until we got to the elephant exhibit.

We got to see the new baby elephant, along with some zebras and giraffes. A few sleeping rhinos as well.
Dante was unimpressed. We strolled up to the giraffe feeding area and were completely grossed out by the foot-long, articulated, blue tongue of the giraffe snatching up crackers from snotty little hands. Dante was mildly amused.

Next it was "Deer. Deer. Wolf. Wolf." We go see the deer. Totally uninterested. On to the wolf. Nowhere to be seen. Saw some really cool manatees frolicking in the tank. Dante wanted to move on.






Dante leads our tour of the zoo








All in all, it was a bust. At least we didn't have to pay to get in.

Flash forward to bedtime; "Dante in-a zoo! Dante and Mommy and Daddy in-a zoo! Enephan-nan, an giraffe, an zebra, an manateeee!" "An-a monkey a "oooh-ooh-ooh!""

_____________________________________

Had a doctor visit on Wednesday. It went really well. I thought we were going to be out of there in record time, but then Dr.Aung decided that because his sodium and phosphorous were low, she wanted more blood work done for his chemistry. Up to that point we had gotten away with a finger prick, but now he would have to have his port accessed.
"Can't we just have him eat some pretzels, drink some Gatorade and check it again on Friday?"
"No. We really need to check it now to see if it's low."
"Alright. But if he gets pissed, I'm telling him it was your fault...."

The accessing went okay, and we waited around for a bit. I commiserated with the nurse, Jennifer, who has been on the case with Aetna regarding our GCSF prescription that got messed up. We decided to give those monkeys one more chance before we look for another resource. What cluster#@$! that was, but we finally got the meds and everything worked out, after much frustration. I'll spare you all the rant, suffice it to say that if you've seen the commercial where the guy is in the office with all the chimps, well, I think it was in regards to the Aetna Specialty Pharmacy head office. The Orlando folks, however, are on the ball, so kudos to them.

I digress. Port accessed, blood drawn, tests running. You can go. Come back on Friday. Wear sunscreen and don't stay out too long in the heat. - Thanks for tip.

_____________________________________


Today we decided to get out and run some errands and in the afternoon Dante got to have a playdate with his friend Tyler. That boy is a sight to behold. Smart as a whip, and moving at near super-sonic speeds. I swear, I think we had a whirlwind fly through the house today! He was so excited by all of Dante's stuff that I think Dante got excited too. You should have seen him chase the cats. He's running around scaring the life out of these ancient pieces of fur, and Dante was like "Yeah, good luck with that. I tried already. They're not interested."

They had a good time and were really pleased to see each other - for the most part. Dante had skipped his nap, so towards the evening he was getting a bit cranky, but overall a success. It was good to see Heather and Tyler and Gretchen (their baby girl).

_____________________________________

During playtime, the phones were ringing off the wall. At one point the Dr.'s office called. They wanted to remind us to give Dante the Lidocaine before tomorrow's visit, and that he will have a complete chemistry done again. And by the way, his sodium did turn out to be a bit low so the Dr. would like you have Dante eat some chips or pretzels to help boost those numbers......

Event News and Thank You's

First off we would like to send out a big Thank You! to Julie Gibson, the Raymond James legal dept. and everyone over at Raymond James for being so generous and thoughtful. We have been overcome with gratitude at all the support we've received from the community and so much from people we don't even know. It's all a bit overwhelming, but certainly much appreciated. Thank you all so much!

And speaking of generosity, we'd like to say thank you in advance to Caroline and Jennifer at My Little Playtown. For those of you who live in the st. petersburg area, there will be a fundraiser this Saturday at My Little Play Town in largo. It all starts at 10am and will feature all sorts of exciting stuff, including:

• Open Play
• Bird and Reptile Show from Busch Gardens
• Arts and Crafts
• A production of Peter Pan by Whacky Tales Children's Theater Co.
• Silent Auction with LOTS of cool items up for bid.

Wow. I think I might have to sneak out to that.... Again, this event will be held this Saturday, September 30th. Click Here for details and directions, then click on the Dante link. (mylittleplaytown.com)

Actually, I believe that one of us will indeed be heading out to this event, assuming Dante is feeling good and Carina is being nothing less than an angel....

Home again, home again.

Well, we finally got sprung from the pokey!....

Dante woke up this morning all smiles, as if he knew we were going home. Granted, I told him last night as we were going to bed that if we could stay healthy today, we could go home.

At 8:15 I heard him whispering to himself and giggling as I opened my eyes and peeked at him through the side rails from my "bed". He was ready to go. He did really well overnight too. Slept well, no real complaints during diaper changes, very little tossing. I think from now on we will definitely go with the midday chemo route.




Dante helps Adissa flush his line so he can take a bath before chemo.












"Okay, ladies, whatever. Just don't block my view there. I have to watch this video 17 more times today. I'm working on a guiness record..."









Dante reads off his numbers so Adissa can confirm the chemo.









So most of the day was spent getting him in the clear, de-accessed (taking the port out), and getting his insuflon put in. This is like a mini port installed just below the skin so we can give him his GCSF injections without actually poking him every time (everyday.) His nurse, Sean, did really well even though I made him do it righty instead of lefty. And Dante did very well too. He gripped onto Jen's fingers and squeezed tight as it was put in and taped down. Sara was there too, arriving earlier to have Dante help her with Reggie's port removal. Come to think of it, Laurie was there too, enduring the wrath of a cranky Carina. I guess we had the whole gang there.....

Well, as I'm sure you know if you've been keeping up, this visit didn't exactly start off well, but in the end it went much better than our 1st visit. Although there are still some big issues that must be resolved (more on that later), over all it turned out okay.

Dante is much more comfortable with the staff - even though he (we) were still meeting new nurses until yesterday. And he is much more comfortable with the commotion and goings-on around the hospital. He is really starting to bond with some of the nurses, particularly Nancy, Adissa, and Sean, though he is happy to see just about any of them. (The other day, every time Nancy walked by the doorway she would say "Dante!" and he would reply "Nancy!" or visa versa. It made both of them smile each time.) And of course, he is very fond of Dr. Grana. That boy will sit still for her through just about anything! In addition, he sleeps through more noises than I ever could, and endures more bullshit than I would ever put up with.

Yesterday, Dante asked for spaghetti and meatballs all day long, so for dinner, Uncle Mike helped Dante eat a bunch of spaghetti. We kept ordering the food he would ask for and then he would say "No". So, we started keeping some of it in the refrigerator so it was on hand when he did say that item. The nurses and doctors say that some days it is important for them to eat anything they want. I had to draw the line at more spaghetti for breakfast! At home, he seems to eat as he always has, just not as much. Perhaps he doesn't like the hospital food already. I think he eats more food from home than he does hospital food while we're there anyways.







Carina and Marybeth. Apparently they got dressed together.






Last night, as we were drifting off after books and songs, he looked up at me, put his hand on my cheek and said "smoothy", as I had shaved earlier. Then he put his hand on his own cheek and said "Dante smoothy" with a big toothy smile. It continued with "Daddy a-rough. Daddy a-smoothy. Dante a-smoothy. Mommy a-smoothy and baby!"
I said "yes, Daddy's smoothy, but I'll be rough again soon."
He rubbed my cheek again and said "No, Daddy a-smoothy. Dante a-smoothy."
"Dante, where else are you smoothy? Where else is Dante smoothy?"
He reached up to the back of his head and with a big smile said "Dante a-head, Dante a-smoothy." At which point he reached over to my head and with a big smile said "Daddy a-rough. Dante a-smoothy!"

We met a family this time with a daughter, Sara, who has a rare brain tumor and has been featured in the St. Pete Times and BayNews 9. Sara and Dante had been in a music class on our first visit. It was nice to talk to another family going through a similar situation. They have a website as well telling about their story. They have been through so much more than we have so far and we wish them lots of luck. We are on the same chemo timetable, so perhaps we will be at the hospital together next time.






"Yo, I'm outta here."

Notes, thoughts, etc's, and miscellaneous items

Comment replys:
Either it doesn't exist, or we are unable to figure it out (go figure - a tech coordinator and production geek), but at this time we are unable to respond directly to comments without posting a whole new comment. Not that big of a deal, but sometimes we'd like to respond in a more private manner....

What's up Blogger?! All that Google backing and you can't include private/instant messaging? Maybe we should move this thing over to Myspace......Of course, then we'd be able to instant message not just all of you good people, but all the porn star "friend" requests too! Lot's of support from that camp, I tell ya.

So, in regards to all that, if anyone knows of a solution or workaround, please let me know. Otherwise, we're working on a way to reply to comments, but it's still "in development", so in the meantime:
Yes. Thank you so much for your encouraging words. We're working on that. He loves them. He really liked the fruit. You have no idea. It smelled worse than a drunken sailor on Sunday morning. Fantastic! He loved it! I'm so sorry, I completely forgot about that. No, we missed that episode, but I heard all about from the nurses the next day. It tasted so good. We'll know more soon. Thank You. Thank You. Thank you. Holy Crap! Thank You!

Tech Coordinators: If ever there were a group more dedicated and less appreciated, I would be amazed. In the midst of all the crap you people have to put up with you found time to help out, yet again, someone else - this time it had nothing to do with Blue Screens of Death, but you made it work just the same. Thanks so much for your support, generosity, and kindness.

Toys, Books, Knic Knacs, Tchotchkies, Bric-a-brac....:
Many folks have brought in some very thoughtful items that Dante has enjoyed quite a bit (and I can't tell you thankful we are for that.) These items have done well to keep him entertained during our stays. He will ask to play with them on his own, and will often remember who brought it in, which is really cool (if only we could get him to remember to say "please".)

An important part of his treatment is remaining healthy during and after chemo. As many of you know, the chemo depletes the white blood cells in his system, some days to the point where he effectively has none, and this, in turn, affects his ability to fight off opportunistic infections. Here in the hospital, the staff is very diligent about washing hands and using antiseptic hand cleaner. Before anyone enters any patient room they wash their hands, and usually immediately after exiting too. Often I have to remind myself to do this even though I'm a clean freak (thanks Mom.)

Part of this regimen is cleaning off items that Dante will come in contact with, whether it's from home or from someplace else. So in order to remain healthy and on track we would ask all of you who visit and plan on bringing toys or books, to please take a moment before you put the items in a bag, to wipe them down with some antiseptic wipes or hand cleaner. If you can imagine how many little hands may have come in contact with that Elmo book at Borders before you got to it, you can see what I mean.
If you don't have wipes or cleaner, that's okay too. We have an ample supply here and we can take care of it on arrival. Just let us know.
Again, we really appreciate all the thoughtful gifts. They have been a big help.






"Uummm, what exactly, am I supposed to do with this?...."














"Do you have any idea how ridiculous we look?"

Better spirits, less energy

Dante is much improved from our last post. Perhaps it was just the return to the hospital that freaked him out so bad. But, honestly, Chris and I had never seen him act that way before and had no idea how to handle tantrums that bad, especially away from home.

He has been super happy and silly the last 2 days. The only thing you notice is that he does want to sit in bed more and doesn't really want to walk for long periods of time. Although, he was jumping down the hallway earlier...then he says "Mommy up". However, he has regressed into a repetitiveness that is making me feel like my day is being narrated by a little voice. "Mommy change diaper", "Dante ride pole", "Adissa wipe line", "Dante temperature"...it's as if every thing we say and do is now a sound bite that gets repeated over and over.

Today's sound bite was "x-ray, big poop". They took an xray of his back this morning to see how his vertebrae were doing (his L2 has a compound fracture due to the tumor). The xray tech apparently told Chris that Dante has a "big number 2 in there", so Chris told Dante he had a big poop. When I arrived this morning, I heard about it. When I came back in the room this afternoon (mom had been with him for a couple of hours while Chris and I tried to escape to catch up on a Project Runway episode we missed) he tells me "big poop - all gone!".
I think it is a nervousness thing, but every so often, he tells me all sorts of things he has learned that day or that we did. Right before he fell asleep tonight, I heard "x-ray, blue button, light, taco neck(I dropped taco meat in his neck accidentally:), adissa, nancy, nonni, baby, daddy, mommy lay down..."

We think he has started to get some nausea. He got sick this morning as soon as they entered with his food tray. We had heard that smells will get to them. He also seemed to all of a sudden stop a lot of his movement and contemplate as if he was feeling sick. It's so hard with a 2 year old, as he has no idea how to tell you about strange feelings like that. When he did it last night, for the first time, I just said "you had yuckies in your mouth, it's OK." So, he says, "yuckies in mouth" and goes on with playing.

Mom bought Dante some more babylegs - this time with flames, so we had to put him in his Born Lucky T-shirt (Thanks Denise!) and take a photo. His hair has even fallen out in almost a mohawk pattern, so he looks pretty hip. :)

Dante is in love with his oncologist, Dr. Grana. He gets so excited whenever he sees her and says her name. He lays so still for her when she comes in. I had thought he was still tender in his groin area because he flinches and moves so much for me when I change his diaper. Then she comes in and he doesn't move a muscle, even as she is applying serious pressure to all of the areas where the tumors are! I suppose he is being 2.

Speaking of that, Dr. Grana said she can't really feel the tumors anymore. The large one at the pelvic floor can only be felt if you really push and are trying to find something (you should see the look on Dante's face during that part of the exam.) The lymph nodes in the groin are now just feeling like scar tissue from the biopsy and the original smashed node. We will get a CT scan after this round of chemo to check his progress.

Tomorrow is CBC day, so we'll be getting an update on his ANC, and it's also day number 5 for this round - Woo hoo! It's gotten a little quieter around the hospital as many of the other kids have gone home. Ironically, most of the kids that are still here are the ones that were here upon our arrival. So I assume that they are also on long term protocols. Hopefully the beds won't fill back up over the next two days. Keep your fingers crossed....



Dante and Nancy blow bubbles on our last visit.

Does it get better than this?

Wed. morning 9 am appointment for blood counts - you know how that goes.....After dropping Jen and Dante off out front, I had time to drive downtown to the little bagel joint in front of the courthouse, park, order up some egg and cheese sandwiches, reinstall Carina into the car seat, drive back to the clinic, park, extract Carina, stroller, bag etc, walk from the ass-end of the parking lot all the way up to the front door, down the hall, into the office, where lo and behold, still waiting in the exam room are Jen and Dante. - We had time to eat half the bagel sandwiches before the nurse came in to take his blood.

Funny, we can wait almost an hour to be seen, but it only takes 7 minutes to do a Mass Spectrometer Analysis.

Wait, there's more.
"Well, his counts look great, so he will definitely be admitted today...." (finally some good news: ANC 8000!, WBC = 14.8, Platelets = 249. Two days prior he was at 1600, 5.7, and 92. Behold the wonder of Granulocyte Colony-Stimulating Factor) "....but we'll have to wait to hear from the floor when his bed is ready, so just hang tight in here, and we'll let you know." - 45 minutes and two tantrums later, we get to move to admitting, and eventually upstairs to our new room.

It gets better.
Now, we knew it was going to happen sometime, but as I mentioned before, we were already having a two-tantrum day, so we were a little on edge; when we find out that we have to share a room......
Now, many of you have kids, and some of them are toddlers and you know what I'm talking about; those of you who have older kids have blocked out much of this pain - like childbirth - but for those of you who don't know, having a 2 year old is a harrowing experience unto itself. Add to that the fact that he is tethered to an IV pole with 3 ft of surgical tubing and you have a recipe for a power struggle that makes Saw III sound like Weekend At Bernies 2. And by the way, meet the Nelsons, they just found out 10 minutes ago that their teenager has bone cancer, so maybe you could give them a few minutes....

Not to diminish the reality of their pain. On the contrary, the last thing I want to do is compound their misery by having my 2 year old throw an epic hissy fit for the next 25 minutes, while they contemplate the mysteries of the universe on the other side of the privacy curtain. I've been there. As recently as last week, in fact. So you can imagine my concern when Dante decides that no, the Elmo Button Book is no longer entertaining and he must have the New Elmo Button Book. Enter tantrum # 3....

Yep, you guessed it. It continues.
By morning there will be 3 more big tantrums, and if you count Carina howling in my ear for 20 minutes (she got her immunizations on Tuesday) in the Parent's Lounge (like I'm ever going to be relaxed enough to "lounge") while Jen put Dante down for the night, I think you can count 7 total on the day. During one of these tantrums, a case manager comes in to discuss the prescription for the home injections that we are supposed to give our 2 year old daily, but that will, I'm sure, be a whole other entry.

The Silver Lining.
By late afternoon we were fortunate enough to have a couple of the nurses and the Child Life Specialist advocate on our behalf to the Charge Nurse. Who was very understanding and fortunately, there was an open room and we were able to get moved in there for the night. Didn't stop the tantrums, but at least we weren't freaking out the new kid. Unless he could hear Dante down the hall....

....Oh, and they were able to start Dante's chemo at 5:30pm, so he was pretty much finished by bedtime. Didn't stop the tantrums, but at least the machines weren't beeping all night....

Currently.
We are in our third room in 2 days - we were moved, yet again, this evening. This bodes well though, for a couple of reasons: 1. Dante only had 2 or 3 meltdowns today and they were not of the Chernobyl variety. 3-Mile Island, perhaps.... 2. His new roommate is a cute little Ecuadoran girl who is very quiet and whose family speaks almost no English. They have been very accommodating as we squeeze into their room. 3. She is roughly the same age as Dante so if s/he does freak out, we all understand completely. 4. I think she's getting discharged tomorrow, (this may not bode well).

Closing Thoughts.
Does it, can it, get any better than this? Because I doubt it could get worse......















.....But I know that's not true.

---

Maybe it's because we cut his hair...

Long Day

We survived our first blood transfusion. They had us come back at 1:30 (so they could have lunch break). We started a little after 2 and it went for 3 hours and then you have to sit for 30 minutes in case of a reaction. Pretty straight forward actually, as he already had his port accessed(chemo talk for the port in his chest already having a needle in it, like a permanent IV).

How can you get so exhausted sitting in a room all day? Try it with a cranky 2 year old who can't leave a small space and didn't nap. You think to yourself -oh, we have 3 hours? I can get some reading in or some work done. HA! Nothing gets done when a 2 year old doesn't want it to! And the TV and VCR? No Noggin and only videos that are beyond Dante's age, except Barney. Which after 3 hours we resorted to or we were going to deal with some serious tantrums. Not that Dante even knows Barney, but it worked to mesmorize him and keep him still for about 20 minutes.

We had planned on a haircut today, but he was just a wreck after that. We will try again tomorrow. I have been upset watching Dante's hair fall out, as I think that it is obvious sign/reminder that he is sick. His hair is so thick, that a stranger probably wouldn't notice. But, if you lift up the front of his hair you can see it receding. Chris reminded me that to Dante, his hair falling out and looking thin/patchy could just as easily be silly if we make it, as he has no definition of "sick". So, we will try for a buzz cut tomorrow and find some silly hats for him to wear if he wants.

Since his ANC is high and he had the transfusion, we are back for round 2 and a week in the hospital on Wednesday. So, we have tomorrow off and then back to the routine. At least, we try to think positively that it remains routine.

Good News/Bad News

We went to the clinic this morning. How a 9am appointment turns into a 10:30 visit is a question, I think, for the ages....

Anyway, the result indicated an ANC of 1600 - woo hoo!

But, a hemoglobin below 7.5 - so we're back in this afternoon for a blood transfusion. Not sure how this will go. The room looks comfortable enough - for an adult; lots of lazy-boy recliners, magazines, a tv and vcr. I'm not sure how well equiped it is for a 2 yr old, but I don't suppose a sandbox and monkey-bars would be indicated here either.

My main concern is that this procedure is going to take place right at naptime, and last for 3 hours, assuming no allergic reactions. Keep your eyes peeled for the follow up post. It should be a good one.

- chris

Visualize Sloth.

Home again

Just a quick note to let you know we are home. Our 72 hour stay is up and Dante's ANC is at 203. The last 2 days it had been 20, so that's a good improvement. His hemoglobin level is still super low and might need a transfusion if it drops anymore. We have to go into the doctor's office every day this week to get an injection to boost his white blood cell production and check his levels. Dr. Grana said he probably won't be ready for round 2 of chemo until next weekend.

It still means we are practically quarantined at home, but that is SO much better than the hospital. Chris and I were starting to get seriously bored this time. Last time we were so caught up in everything that I didn't notice it as much. The problem is that you have to be "on" all day long to entertain Dante or Carina. You can't just have a spare moment while Dante plays with his toys. We didn't have a crib in the room like last time to put Carina out of Dante's reach. Every time I would get her to sleep, he would go over and try to kiss and hug her or just try to play and wake her up. Needless to say, we are exhausted and could use a break.

We are going to attempt to cut his hair. :( It is falling out like crazy and getting in his face and everywhere else, so stay tuned for a photo. He has so much hair, you still can't tell, but it is getting thinner.

Positive notes

We are allowed to escape the room today - you have to stay in the room for 24 hours after having a fever. So, we have already been to music class, the playroom and to visit the fishies.

Dante's ANC is up to 20 and his other levels are quite low, so he might need a blood transfusion tomorrow. We have to stay until Sunday, but if his counts don't improve, we will be here longer. I hope not too much longer, as we are supposed to start round 2 on Wednesday.

His hair started to come out today. Not obviously to anyone, but lots of strands everywhere on his shirts and pillows. Sara, his child life therapist, had him put a scarf on a puppet, Reggie, who had lost his hair. He also got to put tape on Reggie's port and put medicine in the line. I swear, whatever the child life therapists make - it is not enough. Sara has made our stay here so much smoother, not only in talking to us and Dante but being our advocate with the doctors and nurses as well. Dante is so much more comfortable with the medical equipment and hospital experience after talking and playing with Sara. Thank you Sara!

I thought I would add today some positive things that are happening:

• Dante is super happy. We have a double room, but only one bed, so we made the other half of the room into a dance floor last night. We had a blast!
  
• Carina has learned to smile at the hospital. She was just starting last visit, but now is actually giggling and watching us walk around the room and giving us a big gummy smile.
  
• I get to put Dante in silly outfits - I bought some babylegs - which are perfect for a cold hospital room when they want to check his diaper or surgery scars all the time. Chris isn't too happy about the feminine aspect of the babylegs, but Dante loves them! I think we're going to buy the ones with flames to make daddy happier.
  
• Being in the hospital completely insulates you from all the bad news going on in the world, as we don't have time to read the paper or watch the news. Or be home to get bills in the mail!
  
• I get to take cute photos of the kids sleeping - how rare that is at the same time!
  
• Dante has his first crush - his nurse for the past 2 days, Adissa. Everything is Adissa this and Adissa that. We have really have had the greatest nurses. Everyone is helpful and friendly and puts up with us asking a million questions. But, then again Dante charms them all with his smile and green crocs.

Thanks to Molly for the salad - can't wait to try it! Thanks to Aunt Laurie for the Pumpkin Spice Latte and yet another Elmo button book.
OK - stay tuned for tomorrow's ANC count. I might actually try to fill in backstory tonight if I find the time for those just tuning in...

Backstory - August 13-August 25

On August 13th, Chris and I were feeling the normal strain of a 4 week old newborn and a 2 year old...Chris and Dante went to the Crescent Lake Park playground to get out of the house and get some fresh, if humid, air. Chris went to lift Dante up to the monkey bars and he slipped out of Chris's hands and landed flat on the platform. He was upset, but calmed down and played a little more. When they were leaving, Dante was fussing about not wanting to walk, but this is his normal hot day-close to nap-by the way I'm 2, behavior. So, they're driving home and Dante is alternately crying and laughing. Chris just thinks he's tired and drives around a little more hoping maybe he'll slip into a nap. Then Dante really started to protest and was pointing at his pants, so Chris came home immediately and went to change his diaper...

Upon laying Dante on the changing table and removing the diaper, Chris immediately saw that the area of Dante's right groin looked as if his hipbone was broken and protruding out; but he's still moving his legs..... So, we try to avoid panicking, thinking one false move and the fracture will slip and Dante will be paralyzed, and we called in to the Dr.s office. It's Sunday so we have to wait for the referral service to call the nurse and the nurse to call us...... After talking with the nurse and eliminating a break or fracture, she asked "By the way, has he had any fevers or vomiting? No? Hmmmm. okay." At which point she advised us to head on down to the ACH ER. There the nurse immediately says "Oh, Yeah. That's a hernia."

Thus begins the confused, baffled, and generally perplexed body count of medical profesionals that would review his injury. Before the diagnosis finally came almost 2 weeks later, that count would stand at 8 misdiagnoses. Disconcerting at best.

Back in the ER, the resident took a look at Dante and asked a bunch of questions. Poking, proding, leaving and returning several times. When Chris mentioned the nurse's "diagnosis" he nodded as if in agreement and started to listen to the enlarged area with his stethascope. Frowning and nodding he started pressing Dante's lymph nodes up under his arms and neck, at which he asked The Question: "Has he had any fevers or vomiting? No? Hmmm..."

Enter the Attending Physician; "Yeah, it's probably a hernia. They can do that sometimes when the [insert medical speak here]..." The Resident, not quite convinced said - "I don't think so..."

SO, after an x-ray, blood work, ultrasound, and a consult with the Infectious Disease Specialist ("Maybe it's the Hanta Virus!") they determine it's the lymph node and perhaps he has Bartonella (aka: cat scratch disease). "That's my best guess at this point." says the Resident. God love him, he was really wanting to nail it down , but it was just beyond their scope down there in the ER. They sent us home with some antibiotics and saying we needed to wait on test results.

On August 15th, we went to Dr. Patranella (our pediatrician). She said to go ahead with antibiotics just in case it is an infection. It appeared from the ultrasound that he smashed a lymphnode, but that she didn't like the looks of the x-ray, could we get another one?

On August 17th, we were changing Dante's diaper and remarking about how awful the bruise looked on his lymph node, when we noticed that the perineum was hard and swollen. We called the doctor and got an appointment for the next day.

On August 18th, Dr. Patranella said it could just be drainage or another lymph node, but that the chest x-ray showed something that made her want to get a CT Scan. At this point, we are so clueless! Dante is acting fine- not even complaining of any pain after the initial day of the fall. Dr. P says it could be infection, but it could be something like lymphoma. WHAT?!! But, that she didn't think he showed any signs of it being lymphoma. At this point Chris recalled that Dante's white blood cell count came back normal while in the ER.

On August 20th, Dr. Patranella notices that the left lymph node is now growing significantly. Our appointment for the CT scan isn't until the 25th. So, she calls ACH and talks to Dr. Barbosa who says it is OK to wait until Friday, but that they will make sure someone reads the scan that day.

On August 25th, we have the CT scan done - traumatic experience for us all that I don't feel like writing about. Suffice it to say, that they were not thinking of how to treat a 2 year old that day. We were then sent home to await the results...

"Just when I thought that I was out, they pull me back in...."

Dante is unexpectedly back in the hospital today, and for the next 3 days as the doctors sit and watch cultures grow in a petri dish, on his behalf.

Last night (wed) he started a low grade fever that spiked to 101.4 around 9:30pm. Since his ANC count was (is) 0, Dr. Grana said we should come in. Thus begins part 2 of our odyssey through the labyrinth of managed health care....

Since there were only 3 beds available in the whole hospital, the staff had to scramble to get ready for our arrival. We were told to wait down in the emergency center until the bed was ready. They would start his intake down there and get the antibiotics going. In the meantime I could answer some questions for registration. Yep, the same exact questions I had answered for a second time earlier that morning (see previous post). It gets better: when we get into a room inside the ER, another woman comes in with her laptop from, you guessed it, Registration, asking, yet again, the EXACT same questions I just answered 1 hour earlier. But the fun doesn't stop there.....

...Shortly after our arrival in the ER a doctor came in to check Dante's vitals and go over his charts. He was familiar with the case as he had talked to Dr. Grana earlier, but just for his own edification, could we answer a few questions? Now, as some of you may know ACH is a teaching hospital and all sorts of residents are roaming around looking for some hands-on experience....lo and behold, 30 minutes after Dr. #1, in comes Dr. #2 asking, could it possibly be?, Yes! The exact same questions as Dr. #1!

Mind you, it's about 11:30pm and we have a 2 year old who was asleep about 25 minutes before we had to put him in the car and come down to the hospital. Now, every 20 minutes or so, just as we're getting him settled down, someone else pops in to poke at him. I swear, half the ailments in this facility would be cured if they just left people alone for awhile.

The best part was when Dr.#2 says that the chief resident should be around in a little while to take a look at Dante. "No he won't." I said. "I think he's been seen enough tonight, don't you?"

I continue to be baffled at the level of bureaucracy associated with this system. I was told by the person at the clinic that Dante would need to authorized every single time he comes in to get his blood counts - that's 2 -3 time a week!. I'm wondering if the people at Aetna have heard of this disease called Cancer? How it requires a specific kind of treatment and monitoring?...

And at the hospital too? How hard is it to have a system that records the information once and makes it available for all successive visits? I mean, they gave us a unique patient ID number that is supposedly his forever. Could this possibly be used to access the information each time? And by different departments? Call me crazy.....

45 minutes later we were brought upstairs. Dante fell asleep sometime around 2am. Neither Jen nor myself got more than an hour. So, needless to say, we're a bit wiped out today.

On the bright side, we have our own room. For now. Keep your fingers crossed on that one.

Today, Dr. Grana said that his counts should rebound in a couple of days and so far nothing is growing in the culture. Good news. However, Dante will have to stay in his room for 24 hours before he can roam around, and we're definitely here until Sunday. Hopefully by then his counts will have come back up enough to start Chemo on Wednesday.

The Honeymoon is over

Went to the doctor's today to check his blood counts. We had an 8:45am appointment and we still had to wait almost an hour, AND I had to go fill out the authorization forms again. Apparently these forms (4 pages) need to be filled out and signed everytime he goes in for any reason. So if Dante has to get his counts checked 2 - 3 times per week for the next 6 months, well, you can see where I'm going with this.
What a freakin' scam. Somebody to fill out forms. Somebody to call in the authorization. Somebody to authorize the authorization. Somebody to approve the authorization. I'm wondering where the actual Health part of the Health Management organization comes in. And the organization part for that matter....

So Dante was looked a bit sleepy this morning, at the doctor's office, but generally okay. He knew what was coming though, and was none to happy when it was time to take his shirt off. But then, he's 2, so I guess he's just doing his job.

The nurse asked if we had any questions for the doctor, or if we wanted to actually see one, or a PA. Call me unconventional, but when I go to the doctor's office for a check -up on my cancer, yeah, I generally like to actually see a doctor..... Turns out the point was moot because when the nurse came back in with the counts, Dr. Barbosa was right behind her.

Dante's counts have bottomed out, or reached the "nadir", as they say, which means he is very susceptible to infection now. His ANC (absolute nutriphil count - his ability to fight infection), is at 0. It should be 1000 or above to be "healthy"; On the 1st day of chemo he was at 6300. His platelet count is also very low, along with White Blood Cell count and just about all the other categories. So, needless to say, we will be staying inside for the next couple of days.

Hopefully his counts will rebound in the next 4-7 days and he will be healthy enough to go in for round 2 on the 20th.

Ironically, Jen and I we're just talking about this last night. How we have been pretty lucky so far; that he's been responding really well to the treatment, and his counts are staying up there, but that we should keep in the back of our minds that he will get sick at some point and that we should be prepared for that. Hmmmm.

I suppose he IS responding well, and that his prognosis is still very good. It's just hard each time you have to experience something new for the first time. It tears away all the positive outlook you've built up, in an instant.

Of course, this news is still only 3 hours old, so we have yet to digest it fully. Hopefully we shall be in renewed spirits after naptime.

- chris

Stitches out

We went today to get Dante's stitches out from the biopsy. I think it looks pretty yucky, but the surgeon insisted it was normal. (He has a scar in his groin and a scar on his chest where they implanted the medi-port.) I guess it is hard to see any imperfections on your child. :)

I also heard from the doctor's office, that the bloodwork they did on Friday, Dante's levels looked perfect! He had been low in a couple of areas, but now they are good. The doctor kept saying he would be sick all weekend and start to look pale, but so far - he's the same as always! Now, I can't leave his sight or else he freaks, but otherwise, he is still playing and walking around and eating OK. And we are happy for that.

First Doctor Visit

So far, so good! Dante has been doing great every day since we left the hospital. His appetite is growing and he is in a good mood. He doesn't have a ton of energy, but we only notice that because we are looking for it.

His ANC (Absolute Neutrophil Count) is down to 1000. (This is the number they check as it represents how much fighting power his white blood cells really have. When it gets below 500, it is almost "boy in the bubble" time. His first reading of his ANC was 6300.) Dr. Aung said he should be hitting a low this weekend, and she seemed surprised that he hadn't been vomiting. So, I guess that is good. The swelling has gone down significantly, which is great. The accessed his port to draw blood and he did really well, much better than poking his arm every time we go in.

Dante has gone to Nonni's house for the afternoon so that Chris and I can try to straighten up the house a little. I am not allowed to go far out of his sight lately, so it is difficult to accomplish much between that and Carina.

If his counts are good, we will go back to the hospital on Sept. 20th for another 6 days at least.

Catching up on Thank Yous

These are not in any particular order, but I wanted to make sure we thank everyone and cards are just not going to get out anytime soon! :)

• Soji- WOW - thanks for the quick response with the groceries, I only wish we hadn't been at the hospital so long! The watermelon was a big hit with Dante, a good way to get him fluids. We haven't dug into the frozen foods yet, but those will come in handy!
• John - thanks for checking in on the kitties for us and helping out around the house. You have always been so great about being there for us when we need it.
• Louise - the beef stew was still hot a couple of hours later when we got to eat it! Thanks! Tell Ross it was yummy.
• Molly- thanks for the surprise soup. I was at the hospital by myself that night, and hadn't even thought of dinner plans, so it worked out perfect.
• Lara - the Panera for lunch was a nice treat. That was the day we were getting super sick of cafeteria food.
• Caroline - I can tell you were an elementary school teacher with the food labels! :) The cookies were gone quickly and that was enough pasta for the whole family!
• Nicole - the chicken and yellow rice was yummy - I had plenty for a couple of lunches afterwards. Those books you brought Dante - that's all he wants to read now! "pigeon book, baby animals, zoo book" is now his mantra. Oh and you wouldn't believe the trouble that dinosaur ball was getting us into! :)
• Carol and Joe- thanks for the noisy car (dad would have loved that), the research information and support.
• Dave - Who knew kitty litter would be so important? Thanks for being on call, and persevering through the bad days.
  
• Laurie - fries, fries and more fries...Dante has loved all of your gifts, especially the button book that we are all singing daily! You are going to spoil the little guy - he likes seeing his Aunt Laurie as much as getting presents. It sure was nice to come home to a clean house, although I'm not sure I'd hire them again! :)
• Christy - Thanks for the lunch and the help around the house for my first venture home in a week. I'm sorry we didn't get more time to catch up, but hopefully we will visit at Christmas. I think I might get hooked on that Thai Trout wrap from Evos. :)
• Heather - thanks for coming to help out on such short notice( thank your mom too!), I'm glad it worked out that we got to go to lunch and I got to see some sunlight for the first time that week. You have been a great help just listening.
• Jenny - thanks for the emails and phone call to put us at ease and let us know everything was OK and that we were in good hands. It really has helped to ease our anxiety.
• Erica - I heard you mowed our lawn? :) Thanks, I knew that wasn't going to get done anytime soon. I think the neighbors are going to have to get used to tall grass around here! Oh wait - my grass is always tall! Can you see why I put it off? Our yard is huge!
• Dori and Barbara - thanks for calling on your friends in the know to reassure us that we are doing the right things for Dante.
• Mom - There are not enough words to thank you enough for all of your support. We love you so much and couldn't get through this without you.
• Mike - Dante just loves to see you and I think Carina is developing a crush, as you get more smiles out of her than anyone else!
• Renee - You are so great and patient with Dante, especially when the "mommy! mommy!" was starting to wear thin on me. Thanks so much for walking the halls with Dante and being an extra hand.
  
• Julie - Holy Cow! Your thoughtful planning and quick action were really amazing. The contributions of all at Raymond James are so greatly apprecitated. We are certain it will all be put to good use in the coming weeks.
• Winnie (Chris' Mom) - Thank you for rearranging your schedule to help us get settled into our new routine, and for sharing all your experience.
  
• Everyone - who called, and emailed, and stopped by in the hospital. Who extended positive thoughts and prayers, and have encouraged us to be strong and get well. The long road ahead of us does not seem so crooked.
  

I'm sure there are people I am forgetting, but we truly appreciate it all.~ I can't even explain how amazing it is to have a good support system come through for you when you need it the most.

Many people are asking what else they can do, I think you will be able to tell through my posts when things are getting tough, but I will let you know. For this week, Winnie(Chris's mom) is here helping us out, so we should be OK.

Thanks again to everyone

A good day at home!

Well, after trying to call everyone and email others regarding Dante's progress, we decided a blog would be much easier.

When we first got to the hospital, not only were a bunch of strangers coming in to poke and prod Dante, but all sorts of equipment was beeping and adding to the confusion and terror. So, we started mimicking the sounds the machines made in a silly way to get Dante comfortable. He would make all the techs and nurses smile by making the silly sound the temperature and BP machine made. We taught him to take deep breaths whenever the oxygen sensor would beep, and Chris taught him to say "Fries are done" whenever the IV would start beeping. Hence, the name of our story.



SO, here goes. I will tell you about today and then try to work backwards for those just tuning in...

Dante had a great day today! He was in a good mood all day. He played with the Elmo "button book" a lot and made me sing goofy lyrics to the songs. He played with the Jungle Hunt game Aunt Laurie bought him, which basically consists of hitting a bunch of plastic animals with hammers. He played with Grandma and read a lot of books. Basically, seemed like an average day for a 2 year old.

The only sign that something was amiss was that his appetite is basically gone (but he ate more than in the hospital) and that he got really upset when he pooped.

We have our first doctor visit for counts tomorrow morning, so cross your fingers! We are so happy that his reaction so far has been good.