Fries are done

Sunday, January 28, 2007

One Way or the Other

When you venture out with a six month old and a two and a half year old, you always run the risk that the day could go one way or the other. This weekend, Sunday went one way and Saturday definitely went the other.

On Saturday we went to Wes & Gina's Gasparilla party along with Uncle Dave. Dante was unusually tired from the start. Add in lots of strangers, a loud band, and a moonwalk full of big kids, and you have what turned out to be a recipe for disaster. He started out okay, but soon got disinterested in most of the activities (sensory overload, perhaps), and then he started with the "no's". He threw a number of tantrums until he finally discovered the backyard. He was completely enamored of all the little porcelain animals and stuff to look at, that he just kept going back and forth pointing them all out; counting them up and telling stories to himself about all of them. It was pretty cool. So, it ended up OK and he totally passed out on the way home.

Another really cool thing that happened at the party was a raffle that Wes & Gina put together for Dante. They managed to wrangle up some really great prizes, including a weekend at their cabin in TN. Lots of people bought tickets and many went home with a little something extra. And Dante got a nice little addition to "the Fund". So, a heartfelt thanks to Wes & Gina. They give "friends" a good name.

Sunday was going to be just errands, and we thought for sure that Dante would melt down at least once, with all the in and out of the car seat, and no touching stuff in the stores, but he was actually quite good. He got all excited about the fish and birds at PetSmart. He hung out with me at Joann's while I waited for what seemed like an eternity for the frame people. Why does that always take so long?! And once we got him an oatmeal raisin cookie, the rest of the grocery run was smooth sailing.

In other news, Carina moved up to her big girl car seat, so she is now sitting comfortably, and very pleased with the new ride. Of course, we have no back seat now, but that's not a big deal.

Dante's appetite seems to be picking up. Still being 2 and not telling us what he really wants to eat, but no biggie. I think he's gaining some weight back as his cute little belly is sticking out again. The Zantac must be doing the trick on his tummy. He's been super cute taking his medicines - he asks for "minty medicine" (zantac) at bedtime and then wants us to "smell minty" - wherein he blows on us so we can enjoy his minty fresh breath. Working on his moves for the ladies, no doubt.

He also gets a little upset when he thinks he's supposed to have "purple medicine"(antibiotic for chemo patients) and it's not one of the days he's supposed to take it (weekends).

I asked my mom what he ate today: 2 waffles, about half a box of cheerios, a hot dog, turkey, applesauce, and I lost track after that. He was chowing on some broccoli tonight - which he just loves.

Looking forward to our chilly week - finally get to wear the winter clothes and Carina gets to wear her baby legs!

Thursday, January 25, 2007

Healthy and Sick

Dr. Grana left a message today that Dante's AFP is at 8.3, which is right at normal levels (apparently they've adjusted the range of acceptable values due to our last incident.) We have an appointment in 2 weeks to take another test. At that time, we are hoping to find out how his immune system is doing and perhaps look more ahead to the future. It's an odd adjustment back to the life without 2 doctor's visits per week.

I remember, at the beginning of this experience, reading in the different books about dealing with cancer, that one of the hard parts about treatment is the post-treatment period. It said that now that your lives had become so focused on getting through the chemo and everything, that once it stops, you feel a loss for that routine. It said that many caregivers worry more during this period, since you feel like you aren't actively doing anything but waiting to hear the next test result say that everything is still OK. I can relate to that. I miss seeing the people at the clinic or the hospital on a regular basis, as we have met some wonderful people. However, I do not miss all the rest of it! I guess the hard part now is waiting to finally hear someone say that he's OK.

In looking forward to that, Dante and I made a surprise appearance at North East Park Preschool this week. We stopped by to drop off the registration form for summer and fall. We got to see Miss Jane, who gave Dante 2 "mini-cupcakes" (muffins) that he was happy to hold. A few teachers popped their heads out to say hi and were pleased to see Dante. Miss Debbie came out with Isaiah. The four of us sat down in the lobby and talked. Dante was being very shy, but I could tell he was excited to see them. Miss Debbie was also very excited to see Dante. Miss Debbie said that Isaiah always asks where Dante is and that the class prays for him when they go to chapel. Isaish was one of his classmates that Dante always talked about after class. We saw Dante's pictures hanging up on her door, and they keep an update from the blog posted for parents to keep up with Dante as well. We are hoping to hear that Dante's immune system continues to improve so that he and Chris can go for short visits on a regular basis. Dr. Grana said it usually takes about 4 months to get the immune system back to normal, so we are looking to start back in May.

Carina has been sick since Friday night. She ran a 101 fever all weekend and was not happy, naturally. We saw Dr. Patranella on Monday and she said it was a sore throat virus. She went ahead and did a strep test on Dante's account, which was negative. She said it should take the week for her to feel better, but otherwise, just to wait it out. Tuesday, she developed a rash. Wednesday and today? Sleepy and cranky - which is not like her. No fever since Monday, but she is still just not herself. And she is not sleeping well at night either. Dr. Patranella called this morning and left a message, saying she saw I had called the nurse the day before. (Talk about service and care!!!) She said that a rash is pretty normal for a virus and hopefully she should be feeling better by Friday. I sure hope so. Luckily, Dante has stayed feeling good. If Dante had the same symptoms, he would have been in the hospital! If we have another rough night, I might take her in just to make sure before the weekend that it isn't something else.

We are looking forward to music class, and Wes and Gina's Gasparilla Party on Saturday. I am looking forward to a decent night's sleep. Oh, and our tree finally came down last weekend! It's nice to have our space back.

Saturday, January 20, 2007

Dancing at Ali's house

At music class today, Dante was running the show. He was up in front dancing from the time we got there. He was helping to pass out and collect all the instruments. He was dancing all over the room. Sometimes we go and I can tell he is unsure of himself, because he is hanging all over me - well not today! It was really fun to watch. The best part is that all day long he would say what sounded like "owie" - but he was really saying "Ali" (Miss Ali is the wonderful music teacher). And tonight before we went to bed, he suddenly recalled every detail of the class to me and all the songs and dances. And then he ended it with "we went dancing at Ali's house."

We went over to Tampa tonight to see the fireworks after the Children's Gasparilla parade. No use in seeing the parade - too crowded. But, the fireworks display is about 25 minutes long and Dante had a blast. We timed it perfectly so that everyone was leaving and we got a great spot on Bayshore, with no one around and a clear view of the fireworks. It is beautiful weather out right now, so that made it even better.

Carina woke up sick this morning with a fever, but no other symptoms. She has done nothing but cling and sleep. And squint at the fireworks. I sure hope she's better tomorrow.

When we were getting Dante to bed, he was so overtired that he got the giggles for no reason. I swear, Dante's laugh is the best sound in the world. He's always had the best full-belly laugh; and all the dimples show up and you just can't help but giggle with him. I've really missed that. Sure, we've laughed along the way plenty. But the laugh I heard tonight was from a boy that felt good. And then he went peacefully to sleep.

Oh, and it's Saturday night and our Christmas tree is still up. But, the night is young!

Thursday, January 18, 2007

Are we normal yet?

We survived our weekend without Daddy. Way more arguments with Dante than I would like, but luckily they don't last too long. Dante has started picking fights with me on purpose whenever I am doing something with Carina like washing her instead of him in the tub or feeding her or changing her diaper. All times when I can't take my eyes off of her for too long. I know this is typical sibling stuff, but it doesn't make it any easier! We were all happy to have Daddy home and the kids have been sleeping better since his return.

Dante gave me a small scare over the weekend. He woke up on Sunday and looked terribly pale and was really whiny and upset all day. I could just tell he didn't feel good. Luckily, after he took a nap, he started to look better. And the next day his mood was improved. We found out today that his hemoglobin is low, which could account for the paleness. Perhaps it had dipped that day.

So Dante's ANC is 2600, which is a normal level. His platelets are pretty good, but he is still bruising quite a bit. The only thing low was the hemoglobin. They took blood for another AFP test, and if this one comes back normal, we don't return to the doctor for 3 weeks!!! Breathe another sigh of relief.

This weekend is going to be one of playing super catch up and clean up! We still have to take down the holiday decorations (!), since Chris left at the last minute last week. We're also trying to reorganize the kids' things because it feels like our house is just one big pile of clutter! I'm sure it will feel better once the tree is down and we actually put away that last load of laundry. We are certainly going to have to child proof the house soon. We never really did with Dante, as he just didn't get into stuff. Carina? She is going to get into stuff. She tries to grab anything that Dante has and this morning, without a sound crawled over the pillows blocking her on the bed and rolled onto the floor. Luckily, I had pillows on the floor just in case.

For those of you keeping track, Carina is now going to sleep around the same time as Dante every night. She is not quite sleeping through the night, but is doing much better than the every 2 hours she was doing until last week. The first day I got 4 hours of sleep, I was actually all discombobulated!

Life is slowly returning to normal - whatever that means for a family with a 2 1/2 year old and a 6 month old. Oh, and maybe this weekend, Chris will complete his holiday cards and I will make my presents!

Saturday, January 13, 2007

2 out of 3 ain't bad?

It's a bit of a comedy around here at bedtime and naptime. Carina wanting to nurse, Dante yelling at me to read books, me telling him to be quiet(=Dante gets louder.) I can feel my blood pressure rising and then I just have to laugh at the silliness of it all. We have been doing OK, 2 nights without a struggle, and then tonight's frustration, but both are quiet now.

We are missing daddy this weekend. I asked Dante what he wanted to do tomorrow and he said, "Daddy see Uncle Tommy and Gomma, and Dante and Mommy and Carina hang out." So, that is the plan for Sunday!

Today, we went back to music class with Miss Ally at Baby Bungalow. Chris and I were a bit nervous about there being a big class. Everyone seemed to understand when Miss Ally said that if their kid is sick, they shouldn't to come to class. I'm pretty sure most of them had no idea why Dante's immune system is compromised, but they were all very receptive. Miss Ally had a great idea for sanitizing toys - 1 part listermint mouthwash and 2 parts water in a spray bottle. Smells good and non-toxic. Anyways, Dante had a great time. I could tell he was way over stimulated from being around so many kids, but he did well. He was up dancing around and was the first in line to play the autoharp at the end of class.

We are now into 5 days with no yuckies, so life is good. Dante has lots of energy and seems to be feeling good. Let's keep it that way.

Wednesday, January 10, 2007

Back to "normal"

Dr. Grana called first thing Monday morning to let us know that Dante's AFP came back at 7.8 - normal is less than 7.9. Chris and I have decided to wait and watch the AFP for a while. If it fluctuates again, we will proceed with surgery to find out what is going on. If it stays normal, well, I think that's obvious.

In the meantime, Dante has had 2 days with no "yuckies", so perhaps the Zantac is kicking in. Hopefully, that means he will begin to feel better all around soon.

Chris is leaving for Connecticut for a long weekend so I am looking forward to having my hands full!

Thanks again for all the whirling dervishes out there and melted ice cream on Dante's behalf. It appears to be working so far!

Sunday, January 07, 2007

Another inconclusive result...okay, marginally more conclusive, but still shy of definitive, with a touch of unknowable, and a dash of Hmmmm....

The CT scan scheduled for 7 am, with a stat read by the radiologist turned into a CT at 10 and so many emergencies that the radiologist couldn't get to it until the afternoon. Dr. Grana ended up looking at the scans herself after we were still sitting in the clinic waiting at 12:30 (= really long morning for a 2 year old woken up at 5 am to start the whole process.)
So, here's Dr. Grana's synopsis: the jump in the AFP was not consistent with tumor growth; it would be a much higher number if it were recurring. The last AFP came back at 11.2, so it came down from the week before. From there, a lot of possibilities: calibration error(?!), Dante's natural AFP could be higher than the range, and/or possibly still a small amount of tumor left. The CT results showed that there's one small spot in the lungs, but that is most likely scarring, or Dante not taking a deep enough breath before going under. The only other spot still showing is in the groin area where they did the initial biopsy. The problem is that the CT can't reveal whether it's scar tissue or tumor. So much for the advent of technology...

Dr. Kerr contacted 2 specialists in Germ Cell tumors and one advised to just watch the AFP, the other advised that we do surgery to make sure that the spot in the groin is not cancerous. Dr. Grana thinks that it's a good idea to go with the surgery to eliminate any doubts. The surgery would be very similar to the one he had before, but a bigger incision to get around the one that he already has. They would take sections from all the lymph nodes in that area just to make sure. In the meantime, they took another AFP to see where that's heading.

We are contemplating the options and will discuss more with Dr. Grana when the next AFP comes back. We are breathing a big sigh of relief anyway, because all signs indicate that even if he still has any cancerous cells, it's very limited.

We took both kids in for checkups at the pediatrician this week. Carina's 6 month appointment went smoothly, even with 5 shots. Of course, this was before she got the blackeye from trying to stand up, yes, stand up, on a new toy she got. Dr. Patranella laid it on the line and told me just to let her cry at night so that Chris and I could get some sanity back in our lives. We have had to a couple of times, but she is just ready to party around 9 pm! Hopefully, I will see a good night's sleep soon.

Dante was always at very high percentiles in weight as an infant - 99th for a while and then down to 75th. He is now at the 25th percentile, which was a big cause for concern for Dr. P. He has technically only lost 3 pounds, but he hasn't gained any weight since his first birthday. She told us to start putting butter and cream on everything and to try some supplement drinks. The problem is that he won't touch those things, so we will be trying to add as many calories as possible. He is still vomiting on a daily basis and sometimes more than once. In describing when this happens, Dr. P thinks it's an acid/gastritis issue, so he's on Zantac now. Hopefully, once that kicks in he will start to feel better. In the meantime, most mornings still start with grabbing the "yucky bucket". I told her that we were having issues with behavior and we aren't sure if the cause was Dante being 2, having a new sibling, constant doctor visits or what. She said that it was probably all of those, but mostly that his stomach hurts. Imagine how you feel when your stomach hurts for a long time, are you in a good mood?

He was actually in a pretty good mood this weekend, until bedtime of course! but that's another story...

Thursday, January 04, 2007

This time with feeling!

Tomorrow (friday 5 january) Dante will have another CT scan. This is a big one given the recent developments with the increased AFP. Much of what is revealed (or not) will determine the course of the next couple of months and the outlook for his prognosis. We are hoping to see nothing. No growth, no scarring, and no new tumors.

Nada. Zip. Niente.

Your assistance in this regard is requested. Please feel free to send all your positive thoughts, prayers, energies, and vibes in his direction. Recite your mantras. Rub your crystals. Whirl your dervishes (?!). Whatever it is you do, we'll take it!

And, as always, please include a vision of, as our good friend Chris Schiller put it a few weeks back, "The Chornobyl equivalent at the Ben & Jerry's factory".

Thank you for your continuing love and support.

Monday, January 01, 2007

New Year's black cloud and silver linings

Chris and I feel like we have been walking around with a black cloud hovering over us all week. How can you not be full of dread after getting the AFP news and then having to wait so long for an answer? And to have a normally happy holiday to celebrate in the meantime? It was especially tough as people said "Happy New Year!" We have much to be thankful for, but this feels almost as terrifying as it did after our first visit to the hospital and Dante's diagnosis.

Last night we went to the shuffleboard courts and watched the fireworks over Mirror Lake. Dante had a great time, acting out all the explosions in the sky - sound effects and all; and both kids stayed up until 1am!

We paid for it today though, waking up too early, no nap, and visitors. Carina apparently thought that tonight was also a special occasion and didn't go to sleep until midnight. This girl definitely has her daddy's night owl tendencies.

Despite all the stress, there were some positives from this week:
  • Dante looks much better and his appetite is back. He is still getting "yuckies in his mouth", but it's mainly because he tries to eat too much and his system can't quite handle it yet.
  • Chris's dad, Tom, is in town for a few days to visit and Dante is having a great time showing Grandpa all of his toys, and playset.

  • Today, we had an impromptu New Year's Day gathering at the house, with what I called the Bizarro Smorgasbord. We had all sorts of food that didn't quite go together. My mom made Hoppin' John, so that we could eat black eyed peas for good luck. There was chili (bean and no-bean?!), hummus, squash casserole, and a couple of vodka tonics. (if you see a big green cloud over Euclid/St. Paul's, that would be us.) Aunt Laurie & Robb, and Uncle Dave came by as well. Dante loves to entertain and have other playmates around. We were very happy to see Robb out and about.
  • I took Carina to the doctor on Friday, thinking maybe she had the starting of an ear infection or something. The doctor took one look and asked if she was really 5 1/2 months old, because she was sitting up on the table, proficiently playing with a toy, and she's starting to crawl. The doctor said we better child proof now, because she could be walking by 9 months! Anyway, her ears look "beautiful" and we deduced that she must have a seasonal allergy. The doctor's words were "Sick of the Christmas tree yet? Take it down and I bet she'll feel better."
  • Dante and I made "sprinkle cookies" today. I'm pretty sure that a couple of the cookies had more sprinkle than cookie, but Dante had a fun time shakin'
This week includes getting results from another AFP test, Carina's 6 month check up, Dante's CT scan, and hopefully, some playtime mixed in-between. I still hope to complete my homemade gifts for the year, and maybe Chris will finish up the X-mas cards too - one can dream!