Thrown For a Loop

We received distressing news at the doctor's visit yesterday; we were told that Dante's alpha feto-protein(AFP) count has increased to 18.8. It had previously dropped to 6.9 (normal is 7.9 or below). We are scheduled to have a CT scan next Friday and they will be reading the scan immediately to help us determine the next course of action. Unfortunately, it will almost certainly involve more chemo and/or exploratory surgery. They took another AFP in the interim, but we won't get that back until next week. We can't even begin to speculate what is happening and why the AFP has jumped so high. There are a couple of possible scenarios, but at this point only ones that involve the words "fluke", "anomaly", and "someone else's by mistake" are one's we want to entertain.

We knew that with this type of cancer, if it were to recur, it would most likely do so within the first 6-9 months. We didn't expect it to recur in 6-9 days. It's too early to say what's going on, but one wonders if this is more of the same, the same thing coming back, or something else entirely. It's that last one that scares us the most.

As you might imagine, this has put a damper on our holiday celebration. At the very least it's put the cautious back in optimism.

Please keep Dante in your thoughts.

A holiday of over-stimulation

Today was a really nice day. Before today, Chris and I were barely keeping ourselves sane with balancing family, preparations, child care, and shopping. We are exhausted from all of that and looking forward to relaxing these next 2 weeks and enjoying our family. Back to today; I had nothing planned and just sat around and played with Dante and Carina all day. We didn't even change out of our PJs! It's rare that we ever have days with no doctor's appointments, or errands to run, or work to go to. I think I need to do that more often.

Dante had a wonderful Christmas -as much as you can when you're totally over-stimulated. He got a lot of fun gifts and just what I requested - no electronics - just good old-fashioned fun like legos, toy cars and planes and a cool bug game. He did get an Elmo TMX from Kim, but it made him cry, so that promptly went back in the box for a later date! Carina had fun just trying to reach the paper to chew on. Oh, and she started lunging this weekend - not quite a crawl yet, but with the butt in the air and plenty of movement. We are definitely going to have our hands full with her! We took our time and opened presents and played and then went over to Nonni's house for a delicious dinner. Being as over-stimulated from presents and all the people, neither Dante or Carina have had much sleep - which in turn means we have had even less. We're both reaching that sleep-deprived state where you are functioning but can't remember what you are in the middle of doing half the time!

Dante seems to be feeling a little better today. His color is good, so I don't think he will need more blood this week. He is still bruising bad, so he might need more platelets tomorrow. He doesn't have much of an appetite and has been losing weight. I think he might have some mouth sores, a common side effect, which is making eating no fun! If he sticks to the same recovery schedule as he has after previous rounds, he should be back to "normal" by the weekend. We will be having our follow-up CT scan next week sometime to make sure that things are clear. They did another AFP test and we should be getting the results back this week.

I put normal in quotes, as I don't think we will be back to normal for quite some time. Life is way stressful around here and Dante's behavioral changes are difficult to determine if they are related to having a new sibling or they are from him feeling like crap. I am hoping for the latter because that should be going away soon.

Early gifts

We spent the last 2 days at the doctor's office getting platelet and blood transfusions before the holiday. Dante's platelet count was at 7...I think he was bruising if you looked at him funny. Hopefully, now that he got the blood, he will have more energy and be on the upswing for the holidays. His ANC is 1300 today. Still low, but not as "boy in the bubble" time as he was. The doctors wanted us to get his follow-up CT scan next week, but we said we wanted to wait another week so we could enjoy our holidays a little more!

Uncle Tommy, Keiko and Gomma arrived in town this week and we are looking forward to relaxing and enjoying family over the break.

I went to work a couple of weeks ago and as soon as I sat down the phone rang and said it was Q105, will you hold? Oh no....I'm about to be on the radio...So, I hear Mason Dixon read a letter from my friend Nora, at work. It told him about what we have been going through the past months and I was already speechless. Mason then proceeded to tell us that his charity, The Christmas Wish Fund, was going to try and make our holidays less stressful by sending us a check for $1000! I was speechless and in tears. What a nice early gift and he was right! It has already helped to lessen the holiday money stress! We have truly been blessed with wonderful friends. But, more on that later...

I'm off to try and get a couple of last minute things. I still haven't finished my homemade gifts of the year or baking. I think we will enjoy New Year's cookies instead!

Where to Begin?....

This is what happens when you don't stay on top of things, I suppose....brace yourself, it's a long one, but with lots of pictures too....

So let's pick up after the good news from last post:
Dante is finished with the "prophylactic round" and is going through the post chemo bubble boy syndrome; his ANC was 200 today, down from 7300 on Thursday. And get this, when I called the Aetna Pharmacy to confirm the refill of his GCSF (the drug that boosts white blood cell production) they first said we were out of refills, then they saw that there were two left but it couldn't be filled until the 27th. Then they saw another mistake and said they could move up the refill to the 22nd....."well, that'll come in handy while he's in the hospital with a fever because his ANC was so low, because his prescription couldn't be filled."
"Well it's the insurance, not us. I can only fill what it says on the computer."
- Apparently the irony was lost on the pharmacist. On a number of levels.

A call to our guardian angel/HMO beat down technician, Jennifer, at Dr. Barbosa's office, was met with a "don't worry. I'll take care of it. I'll call you by the end of the day." 20 minutes later the Aetna pharmacy called back to confirm delivery tomorrow of 2 weeks worth of GCSF......

In related news, Dante is generally in good spirits, due in no small part to his new playset (read more below). He is, however, definitely more compromised after this last round, than from previous rounds. His bloodwork was all borderline today. I thought for sure that he would be getting at least a platelet transfusion today, but he was just above the cutoff so we're going to wait and see if he trends up until thursday.

It's tough because we know that everything is looking good overall, but day to day, he's so worn out. It's hard to be excited this way. Hopefully we'll be able to get another AFP soon and start the celebration for real!



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Earlier last week Dante's playset was installed. He has been climbing all over it since. This was a gift from the Children's Dream Fund and we want to express our sincerest gratitude to Kristen and everyone over there for making this a reality. He hasn't been this happy since he got out of the hospital after the first round!

On saturday we had a little party for him and few of his friends (who were healthy enough to come over - we'll have another party when his system is a little stronger). There was cake, and balloons, and laughter, and lots of smiles all around. Dante's been talking about nonstop since. I asked him if he knew what we were going to do today (Dr.'s office) and he said "Playset Party!"







The Boys, ride again.






























Caleb scales the rock wall.













Tyler gets in the holiday spirit, with balloons!


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On Sunday, we got to see Santa at the ACS Holiday party at the Vinoy. That was a fun time as well. This being the first year wher the Santa concept is starting to click, he was pretty excited about the whole thing. Especially when this fat guy in the red suit somehow knew that he wanted the Diego Rescue Jeep and delivered. Thank you Santa, for leverage. At least for the next 2 weeks or so.








Dante meets Santa














"Holy Cow!, How'd he know I wanted this one?!"















Dante and Mommy gettin' their Hokey Pokey on.
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On Wednesday, my Grandmother and my brother will be joining us for the holidays. I'm looking forward to that, though it will be bittersweet without my Mom here. She had planned on a big reunion of sorts, this holiday. Back in July she started planning. Buying the tickets and making all the reservations by early August. This has been a really tough season for us, so we're looking forward to being together and being healthy.

We wish the same for all of you.

Happy Holidays!

Spirit Guides

Throughout Dante's journey, he has been watched over by 3 spirit guides; He has a hippo, which reminds him to be strong. He has a rhino, which reminds him to be tough. And he has a tiger, to remind him to be fierce. You might have seen them appear in some of the photos we have included. Throughout our journey Dante has been unbelievably strong, tough and fierce in fighting this cancer. He has also had a lot of positive energy and prayers sent his way ,and a whole lot of ice cream melted on his behalf....That being said...

...Chris and I met with Dr. Grana on Monday. She was smiling throughout the conversation as we discussed that she is 99% sure that Dante is cancer-free. That one spot that showed up on the PET scan accounts for the 1% of doubt, but really, everyone thinks that it's scar tissue. His AFP is within normal the range. Just to make sure that he is clear, we're at the hospital for one more round of chemo (minus one of the drugs).

Once Dante "recovers" from this round (about 3 weeks), we will do another scan and AFP to check. Then he will be scanned every 3 months for a year, then every 6 months and then once a year for 5 years. We will probably get to go down to only one doctor visit per month after his levels come back up. His immune system will not fully recover for 4-6 months, so he cannot return to pre-school until May at the earliest. The type of cancer that he has has a very low chance of recurrence after the first 6 months, so we will still be keeping a close eye on things for a bit longer.

Dr. Grana was very pleased, and amazed, that he went through the protocol so quickly and without many troubles. I told her that it was probably because we had hardly left the house in 4 months!

As for the side effects of his chemotherapy, his kidney function test (GFR) came back normal. That's a relief. So we know that there has been no damage to his kidneys. We will do another test after this round just to be sure. His lungs can't be checked until he's mature enough to perform the breathing test (around 5-6 years old). His audiogram shows that he does have mild to moderate hearing loss in both ears. We knew this to be a common side effect of one of the drugs, Cisplatin. They are recommending hearing aides, but we'll be having him tested for speech and language development first. We probably won't move ahead on those until after his recovery from this round as well, so we can test his hearing again.

Dante is doing okay with this hospital stay. He is definitely feeling better, as is shown in his feisty spirit throughout the day. Sleeping has been a little off due to the plethora of "stimuli", but tonight we had no roommate and a quiet room and he went right to sleep. He is already starting to lose his appetite, but I wonder if it's not just the environment.

We have so much to celebrate and so many people to thank this holiday season. We are looking forward to enjoying time with friends and family and keeping Dante healthy until his levels return to normal.

Our thoughts go out to another family whose daughter, Ashiah, lost her battle with leukemia this morning. She was 2 also. We saw her often and even played together in music class and followed nurse Nancy around. She had a lot of spunk and even said to Chris once about Carina - let me hold that baby!

We cannot say it enough - Thank you. For everything.