....And still holding.

We are in a holding pattern as all of the tests have been somewhat inconclusive; His AFP came back at 12.3, and needs to be below 7.9 (Mind you he was 75,000 in August.) The PET scan was completely negative (Yea!), except for a spot that could be active where he had his biopsy (Boo!). The radiologist was somewhat noncommital about that. His report essentially said "yeah, there might be something there, but it could just as easily be scar tissue. So maybe keep an an eye on it." - Not exactly definitive.

He is SO close, and all of the tests so far show that what's left could be scar tissue or tumor. We are very enthusiastic about these results, but we don't feel like we can celebrate until we hear something definitive.

The doctor's are recommending 2 more rounds of chemo (because that's what the protocol says), however, the hospital is bursting at the seams this weekend. So we're taking advantage of the delay to get another AFP test, and see if it's still dropping.

The results should return sometime between Tues. and Fri. Hopefully Tue. Our feeling is that if the AFP is above range then we'll go back in for another round and test it again after that.

If it's in range, then we'll call it a day and keep a close eye on it over the coming months. Oh, and we'll probably pop a bottle of some sort...

Recent Pictures

Too many pictures from the last week or so to cram into the other posts (but I tried anyway), so click here to see a whole mess of pictures from Thanksgiving and there abouts.

http://www.galileostudios.com/galleryindex

Enjoy.

Good Weekend

Dante is much improved from the other day. No more runny nose, just a little cough sometimes. And no call from the doctor's office about an infection. That's a relief. No hospital stay over the holiday. We were not looking forward to that possibility at all.

Dante looked SO much better this weekend. A lot of his bruises are going away and his color is coming back. When he is not feeling well, his eyes just show it - well they brightened back up this weekend and it was wonderful to see. He also started eating again, which of course makes a mom feel better.

We had a nice relaxing Thanksgiving day with a morning visit from Uncle Mike and cousin Chris. Dante napped through most of the cooking, so that worked out. He was still feeling pretty bad that day, and wasn't really interested in any turkey or fixin's, except, of course, broccoli. Go figure.

Friday, we all went out to lunch at Chattaway's. We didn't order anything for Dante, as he hadn't been eating anything for days. Well, he proceeded to eat almost half of my burger! We went downtown to the park to see what holiday decorations the city had put out and just enjoyed the beautiful weather.

We went back that night to see the tree lighting and hear some music and then to Aunt Laurie's for a visit. Dante had his first introduction to foosball and loved it!

The rest of the weekend was spent just relaxing and hanging out. Carina is going through a growth spurt and wants to eat all day long. She also wants to be involved in anything Dante is doing, which is bringing out the 2 year old "mine! mine!" syndrome. fun fun!

Tuesday into Wednesday

Tuesday was quite a day. Dante really did so well all day, despite the start of a cold. He was in a great mood and charming all the nurses. I couldn't believe it to watch them all crowd around him and just enjoy his company. Although, I guess we always knew about his charms.

The GFR test wasn't that bad - it just sounded long. Then again, they did draw an awful lot of blood for a kid who's only 3 feet tall and weighs in around 31 lbs....
Our office visit went well. His ANC jumped up to 14,100 due to the GCSF, so now we get to stop the injections. His platelets were still low, but nowhere near as low as last week, so no transfusion needed. The CT scan went OK. He was super tired right before, so it took him almost an hour to wake up after sedation. And when he did he looked really puffy and flushed. He had to be intubated so his throat was real scratchy sounding. We could tell he just didn't feel well.

He started to feel warm when we brought him home and he had a low grade fever, so we got him in the bath to cool him off. He feel asleep almost as soon as he hit the pillow. His fever started to go up and Chris and I were obviously concerned. If his fever goes over 101, we are supposed to go to the hospital. We both felt like he just needed some good rest and he would be OK. Well, his fever did go up, so we begged the on call doctor to let us stay home and let him sleep and then we would come in the morning. She said we really shouldn't wait, but if we wanted to check his temperature hourly to make sure it didn't spike, that was the alternative. As soon as Chris and I got packed for the hospital and loaded up the car, his fever dropped to 99. It hovered around 100 all night until about 5am when it dropped to normal. I never changed out of my clothes and checked his temperature every 45 minutes or so. His cold seemed to get worse and since he doesn't know how to cough, his breathing was really raspy all night long.

We went to the office this morning and were quite loopy from our lack of sleep. They took a blood culture and if any funk starts to grow in the petri dish, we have to go to the hospital. His ANC dropped to 12,800 (still 4000 points above normal - thank you GCSF) but everything else was about the same. Dr. Barbosa went over to get our CT results.

I know that Dr. B is being cautious and all, but he came into the room as if he had really bad news. The CT scan showed that the tumor in his back was gone. The other tumors are now so small, there were no measurements, and it's unclear if they are actual tumors or just scar tissue. So, good news, but nothing conclusive yet. He said the PET scan and the AFP will help us to determine how much is cancerous. However, he said he thought Dante would benefit from 2 more rounds of chemo. We just sort of said, we will wait to see the results of the PET scan before moving ahead with more chemo.

Chris and I are realistic in our outlook, but still very hopeful. We really don't want to subject Dante to more chemo than necessary. We would rather get a more accurate determination and then decide. All along, we have been hoping to be told it was all gone, but really thinking he would need a little more chemo, because there's no such thing as having just a little bit of cancer. Kinda like being pregnant...

Dante did not have a fever all day today, but he certainly did not feel well. I swear if he told me to wipe his nose one more time today, I was going to scream. The kid's nose was just non stop all day (must get that from his father - oh, wait. no, that's mouth. Well, come to think of it, it's both.) I'm hoping that by tomorrow, he starts to feel a little better.








waiting for CBC results







We are looking forward to a quiet Thanksgiving at home with our family and Uncle Dave. Chris is doing most of the cooking with all of his mom's holiday recipes and I'm throwing in a couple of my mom's recipes as well. We are looking forward to eating and just being thankful...







drawing blood for the culture after his high fever.

















not feeling so good about feeling like crap.

No news yet

So, as Chris said previously, we really needed that break Saturday from this stressful week. Chris ended up going out to run errands and Uncle Dave stopped by for a little while to help out. Otherwise, Dante was much improved after a really rough Friday for him. He was in a great mood in the evenings eating toast and playing with his sticker book at the table with Chris and making jokes and trying to manipulate not getting a bath by doing just one more sticker. Nonni left this afternoon for a week long cruise, so Dante spent a few hours with her before she left.

I was upset last night when Dante took a bath, because I could see all of the bruises he has from having low platelets and white blood cells. Plus, he has started to lose some weight due to not eating this time around. Chris quickly reminded me that as long as the cancer is gone, he doesn't care what he looks like on the outside.

Some of you were waiting on results from us, but we have to wait a little bit longer. The results we are waiting on will be next Wed and then the following week's AFP results.

Dante's ANC this week was zero on Tuesday and then only up to 100 on Friday. We don't get a CBC until Tuesday, so until then, we have to stay quarantined. I'm bummed because I was hoping to get out and do things over the holiday week. Hopefully, on Tuesday his counts will be high enough to get out for the rest of the week. The GCSF injections that he gets to boost his white blood cell counts drops his platelet levels, which is why we had 2 platelet transfusions this week. We typically only give him injections for a week, but this time his counts are so low we are entering our second week of them. I would expect that on Tuesday, we will need yet another transfusion.

Speaking of Tuesday - are you ready for this schedule? We have to drop off Carina with Aunt Laurie and get to the hospital by 8:30. Dante drinks a solution to protect his thyroid during his GFR (glomerular filtration rate) test (a test that checks his kidney function) and then we wait 30 minutes. They draw blood. Then they inject him with some radioactive substance and draw his blood every 5 minutes for 3 blood draws. Then, we have 4 hours "off". During that 4 hours, we need to get a CBC and possibly a transfusion. We have to get him to start drinking the contrast solution for the CT scan. Around 2, we get a CT scan, they draw more blood. Then 45 minutes later, draw blood, wait 45 minutes, draw blood again. I think I can safely say we will be exhausted after trying to keep that schedule.

I suppose one could weigh the monotony of sitting in the hospital getting chemo against sitting at home playing and waiting for results. I would definitely choose the "at home" option.

Living in Limbo

I think that finding out any news is better than not knowing anything at all. We are currently in limbo as far as Dante is concerned. He is right now getting a bone scan (I will never get used to watching them put him out). Next Tuesday, they will be doing a CT scan and a GFR test. The GFR tests his kidney function, as the chemo is pretty rough on them. The following week we have a PET scan and get the results of his Alpha Fetoprotein count. And then yet the following week, we have the hearing test, as one of the chemo drugs has the common side effect of hearing loss. We had tried to schedule them all closer together, but no luck. In the meantime, we have had 3 transfusions this week, and a daughter who is not very happy after receiving her 4 month shots. So, here we sit, wondering what's next, wondering how our son is doing, wondering how to plan for the holidays, just wondering.

In the St. Pete Times today, there is an article about a little boy, Avant Brown, who passed away this week that we met at All Children's and was there for most of our stays. Although we didn't know him very well, as you don't get to interact much with other patients, we did see him often and, are saddened by the loss. Our thoughts go out to his family.

Stay tuned for the results as we receive them over the next couple of weeks.

Are We Coming or Going?

What a crazy day for us today as a start to the craziness of this week. We had Carina's 4 month well check up this morning. She is the same length and weight that Dante was at 2 months! She smiled the whole time and did great with her shots. She got 4 shots and is now not feeling too happy.

Next up, Dante had a doctor's appointment and we found out his ANC is zero and everything is bottoming out. His platelet count was 8. So, Chris and Dante had to go back to the office for a transfusion this afternoon. I left work in a rush to try and help. He might need a transfusion of blood on Thursday, so we have an early appointment to check. If his blood counts are too low, they won't do his scans on Friday.

Dante has been on a very thin thread emotionally lately. I think that is the only way we can tell he is feeling bad. He cries at the slightest little thing and then can't seem to stop or know even why he is crying. He is pretty happy most of the time, just quick to get upset. He isn't eating very much, although he is drinking and trying to eat throughout the day.

After hours on hold and I don't know how many phone calls later, our PET scan for tomorrow is not going through. We could write an entire post on that, but will save that for later! Anyways, we will be trying again for the PET scan at the end of the month. We are having a bone scan and CT scan on Friday. I don't think they will be checking his Alpha Feta Protein again until next week. Here is what we are looking for to get the all clear: AFP of less than 20 and nothing on all of the scans. If those are clear, we wait three months and then rescan to make sure the cancer has not returned.

Thankfully, a mom from the Northside MOPS group brought us dinner tonight, so we didn't have to worry about that and could focus on keeping the kids happy.

Now we just need to keep Dante super clean and healthy. Last time he hit this low, he ended up getting a fever which means a hospital stay. We are limiting his exposure and doing a ton of laundry these days, as we have to change all our clothes whenever we come home. Hopefully, his counts start to come back up by the weekend.

So, as Chris said, I'm sure by Saturday, we will all be in need of some quiet time after getting through this week.

Benefit Extravaganza!

Whew! we've got a busy week ahead:

• Dr. visits for both Carina and Dante on Tues.
• Scans are scheduled for Wed and Fri.,
• Working Wed, Thu.
• Teaching a class at Eckerd Wed night.
• Screening some films at the Tampa Museum of Art on Fri night.

Don't call the house on Sat. we'll be sleeping....Sunday too.

Big, big thanks to all the Sweet PEAS, Fore the Children, the many sponsors, Brenda Bonnell and all at NorthEast Park Baptist Church, and everyone who attended the benefit dinner. We were really overwhelmed at the turnout. Lot's of fun activities, tons of great raffle prizes, and loads and loads of pasta!


Check out lots pictures from the event here.

Don't forget about the Fancy Pants consignment sale this weekend. Specially tagged items will benefit Dante's recovery, and there are other charities participating as well. Unload your stuff, buy new clothes, and help some in need. What's not to love?! I think there's still time to contribute your wares if you're so inclined. Contact Cynthia at 727-667-6895.

Dante is doing okay this week. His blood counts are dropping, but he is in good spirits. We hope to have good news for the next update.

Strains of INXS

"...this time, will be the last time...."

Okay, that was a stretch. Unless you were 16 in 1986 you probably won't know that one. But I digress....

We're done with round 4 and boy was this kid excited today. He was sitting up in bed quietly waiting for me to get up this morning, and when I finally did (after a really horrible night) he was Mr. Chatterbox. He totally knew he was getting out today. It was great.

On top of that, he didn't want to play on the computer at all. He asked once and that was it. The past few days we've watched him turn into an egghead before our very eyes..... gettin' his geek on!

I suppose the upside is that he's finally improving his fine motor skills (there ya go Ms. Debbie, he'll be all set when he gets back to class!). Mousing like a madman. He even rearranged part of my desktop, though I think it was unintentional, I suppose it's only a matter of time.

So yeah, we're out, and we're looking forward to a busy couple of weeks. Tomorrow I'll be working the election all day, and then CBC's and blood work on Wed. and Fri. The benefit dinner on Sat. (see 2 posts below for info - should be a lot of fun.) The following week is the big one: PeT scan on Wed and CT & bone scans on Fri. That Sat. we should have word. Don't worry, you'll all be receiving invitations to the Ben & Jerry's fire sale prior to that.....

In other news, and it's good news; Dante's AlphaFeta Protein level is 49 as of last Wed. (pre rnd. 4 chemo). Previously he was at 600 (post rnd 2) and our target is 20, so we're heading in the right direction.

Pop quiz for you trivia buffs: anyone recall what his starting level was back in August? Hint: it had more than 3 zeros on the end.

Once again I'd like to remind everyone to take a look at the info regarding the upcoming benefits. They're posted below, and we'll send out a last minute note later this week, but we'd love to see all your smiling faces out there.

More soon.

- Chris

Images from our last stay:

Chernobyl at Ben & Jerry's....

...That was from our friend Chris Schiller, in his response to the very first email we sent out announcing Dante's condition. This possibly being the last round, we're pulling out the big guns...

So, we are officially admitted for our fourth round of chemo, and according to the protocol, this is his last round. Afterwards they rescan and test and decide a course of action from there. There are a couple of scenarios depending on what they find: more chemo, surgery to check if scans aren't conclusive, or we are done! We are melting some serious ice cream and hoping for the last option.

When we were first given this protocol, Dr. Grana told us to expect that it will take much longer than the listed 10 weeks. "No one ever stays right on schedule, due to infections or low blood counts, etc." There's a first time for everything, I suppose, so why not Dante, right? So far, Dante has only had one brief fever and he is exactly on schedule. Today, when Dr. Grana came by she seemed very positive and said that she couldn't feel any tumors in his pelvis anymore. She was very pleased and a little surprised to hear he is right on schedule.

The realistic part of this, however, is that Dante started with a lot of disease and a very aggressive growth rate. This causes us to believe he will need at least another round, but we won't know for sure until the week of Thanksgiving (auspicious, no?) However, we're still visualizing fields of gooey, melted, Chunky Monkey and a mushroom cloud just north of Waterbury, Vermont. Feel free to join us in our exercise in the power of positive thinking - we'll take all the help we can get.

The hospital unit was so busy Wednesday, that Dante and Chris sat at the office on pre-hydrating fluids for most of the day waiting for a room to be ready. Dante was in a surprisingly good mood when I got to the hospital after work. After all that waiting for a room, they ended up moving us into a different room across the hall a couple of hours later. We are now sharing a room with an adorable little girl that is the same age as Carina. It just breaks my heart to see an infant that tiny in here.

In all of these visits, we keep him busy sometimes with games online and today, he started proficiently using the mouse and playing a concentration game, matching animals to their homes! I couldn't believe it! I suppose that's one good thing that has come out of this experience - we've been able to feed his inner geekness.

The biggest problem lately is trying to get him to stop wanting to play these learning games! :) No, seriously, it is a tough transition once we get home, because in here, we have to keep him occupied with activities that you can do while attached to an IV pole; puzzles, coloring, reading, baby einstein, and computer games are about the extent of it. Once we get home, he seems to want to stay in that mode for a while instead of playing other games or outdoor activities. And frankly, after playing letter factory or going to starfall.com for a week, I need a break! Not to mention looking at computers all day now that I am back at work, it's the last thing I want to do when I get home.

Well, that's all for now. Please take a moment out of each day, if you can, and think of our shining star and visualize bowls and bowls of melted, gooey, ice cream. So far, the cancer has been responding well to all forms of treatment, and is melting away, so hang in a bit longer as we try to make it through the home stretch.

Peace,
Chris & Jen