Upcoming Benefits for Dante

We wanted to let everyone know about a couple of upcoming benefits organized to raise funds for Dante's medical and living expenses.

First up, on November 11th, a group of moms from my Sweet PEAS group are hosting a spaghetti dinner at Dante's preschool. They have rounded up some great raffle prizes, including gift certificates from local restaurants, Publix gift cards, a Tickle Me Elmo doll, personal training sessions, and more! There will also be entertainment and children's activities provided by Movement Gallery. Tickets are $10. This event will be held at NorthEast Park Baptist Church Fellowship Hall on 1st St N and 38th Ave N at 5:30pm on 11/11/06. For more information, please call or email Stacy at: slrettig71@yahoo.com or 727.521.0555. Chris and I are going to try and make it out and see everyone. I am excited to see all the raffle prizes!

Next up, on Friday and Saturday, November 17-18th, there is a Fancy Pants consignment sale. The sale is at St. James United Methodist Church - 845 87th Ave North in St Pete. (Just off MLK Blvd near Gandy.) This is a group of moms that sell consigned baby/children's items about 4 times a year. They are accepting donations to sell things that directly benefit Dante. Again, the Sweet PEAS group are organizing this and gathering up items to tag. FYI - this is a big event and many people consign items, but there will be items specifically tagged with a little heart and Dante's name for those items whose sale will benefit him. So please come on out for some great deals and if you happen to have some good quality children's items you want to add please contact Cynthia at 727-667-6895.

We also wanted to take this opportunity to thank everyone involved with the previous benefits held for Dante.
Over at My Little PlayTown we wanted to extend our gratitude to Caroline and Jennifer for putting together a wonderful, fun-filled event that featured all sorts of great auction items, and really cool entertainment.

We would like to thank Ms. Brenda Bonnell and everyone at Northeast Park Preschool for extending such gracious consideration on Dante's behalf, and for making us a part of their community. The people that make up this community - The teachers, the staff and of course all the families, have been such an inspiration. Indeed, they have proven to be, as Dante's pediatrician said, the best kept secret in St. Petersburg. We are so grateful to have been welcomed into their hearts.

We would also like to thank our neighbors, friends, coworkers, and of course, our family, for finding unique, thoughtful, and ever practical ways to make our days easier and our journey smoother. Sometimes it's homecooked meals, sometimes it's Publix gift card. A well thought of activity to pass the long days in the hospital, or maybe even a day off for us to run errands. Please know that we are overwhelmed by your efforts and are eternally grateful for your support.

Thank you.

With love,
Chris & Jen

Catching some fresh air

Dante and Chris went to the doctor today and Dante's ANC is 7100! Whew....now we can get out of the house and breathe a little. I imagine that most of us have ANCs about at that level, so that lets us at least be around some people.

We went on the preview for our neighborhood's annual Haunted Hike event tonight. It is a family friendly way to get out of the house during the halloween season and enjoy some spooky stories. We decided to skip Halloween for Dante this year. He doesn't really get it yet anyway, and that way we can avoid spreading extra germs his way. But we did get him to wear his "I love my mummy" shirt tonight!

We don't have to go back to the doctor until our next hospital admit on Wed, November 1st. So, if you don't hear from us, we are probably trying to relax and enjoy a break again!

Loooooooooonnnnnng Day

Chris and Dante went to the doctor's appointment at 9am yesterday. His ANC is 400 - very low. Everything else had dropped even lower than Monday, so it was transfusion time. He needed red blood cells and platelets. He has lots of little bruises all over from the low platelets and every little scratch or bug bite just never seems to heal completely. Apparently, the room was full of other people getting transfusions in the morning and it is not much bigger than a standard office exam room.

Dante did very well, but I left work a little early just in case. You never know with a toddler with no nap in a small room tethered to a short IV...We didn't get out of there until 4:15!!! Chris was just beat after entertaining Dante all day, and Dante had a lot more energy since he had new blood.

I decided to stay home today, much earlier day off than planned, but I just don't want to risk him catching an infection from me bringing something home from school. Aunt Laurie will be playing with Carina today, so we will get some good mom and D time in today!

Here are some of the photos I couldn't post previously from the hospital:




Nonni and D in "cars and people"














Dante's trifecta of nurses - Jessie, Nancy and Adissa
















passing the time...

Hitting the Lows

I started back to work today and Chris also worked some long hours today, so we will give a better update soon. But, I wanted to fill those of you in who have been wondering...

When we went to the doctor on Thursday, his ANC was 12,800! That was the GCSF talking. However, his hemoglobin level was low and close to needing a transfusion. Over the weekend, I knew something was just not right. He was nauseous most mornings, he didn't eat hardly at all and he would cry at the drop of a hat. All of that in addition to looking really pale and puffy. I called and spoke to Dr. Ayala who said he should be OK until his Monday appointment. But to call if he got really lethargic.

Since I had to work, I couldn't take him to an appointment until this afternoon. His ANC is now 700, his white blood cells are low, his red blood cells are low, his hemoglobin is low, his hemocrit is low, his platelets are low...so, they typed his blood and told us to come back on Wednesday morning and if his counts are still low, he will get a transfusion. I would have come back on Tuesday, but Chris and I both have to work. Dr. Grana was there and she said it shouldn't be a problem, as long as he doesn't get lethargic or get a fever before then.

Dante did really well at this appointment considering all that had to be done: normal vital signs, finger prick for CBC, removal of insuflon, access his port and take blood, deaccess his port, insert new insuflon, and give him his GCSF injection! Whew! He was not happy, but he got over it pretty quickly when I told him we could go see Dr. Grana. :)

He ate a bunch of food today and while he was pale, he seemed to have plenty of energy. Now, we just have to be super diligent about germs! All this serves to remind us that even though he is making progress, the cancer and the chemo are taking a real toll on his body, and setbacks are ever possible. These last few weeks we suspect, will be difficult, as each time Dante goes in for treatment his body has had less and less time to recover.

We continue to think positively and look forward to a Thanksgiving with something to celebrate.

Beans and Rice

We got home from the hospital Monday afternoon. Dante's sodium levels were low, so they kept us a little longer that day to give him a saline IV. His ANC is 1100, but I'm sure after the GCSF injections it will rise or at least stay steady. Chris and I have noticed that his low is usually the weekend after we get out of the hospital. We have our doctor's appointment on Thursday, so we'll see if our theory holds. I am hoping for another 2 weeks of smooth sailing before round 4!

While we were at the hospital, Sara came in to read a story about germs to Dante. There are these stick puppet germs that Dante is supposed to find and wave around when the book talks about it. He knew exactly which one was going to be next each time and really got into saying "EEWWWWWWW" each time. When she finished, there was one she didn't use and he sat there and waved it and looked at her, like "Hey, you forgot one!" It was so cute. He definitely has an analytical mind and was figuring out the sequence the whole time. Since we have been home, if I bring up germs or if something drops on the floor, he has either thrown it away or said "EEWWWWWWW!" Of course, these haven't been things he really wanted...

Dante didn't eat anything in the hospital for 4 days. Everything I offered him, he about turned green when he looked at it. We came home and I took him out to get some black beans and rice and he ate almost half the bowl! And some chips! Today, he ate well again, so that is a relief. I swear, this kid is something else. Every side effect they have told us would start right away has yet to truly hit him. I am not fooling myself and expect them at every turn, but it sure is nice to not be bombarded by them from the beginning.

We are missing Daddy this week, but have been able to video chat a couple of times. I am exhausted from managing both kids during a hospital stay and now coming home to the realities of life. Luckily, my mom and brother came over as reinforcements today to give me a much needed break. I have also had lots of offers for help with meals and grocery shopping and yard work, that I gladly took people up on. Thanks everyone for everything! Stay tuned for pics when I can find the cable for the camera!

Missing our grandma...

Chris's mom, Winifred, passed away on Friday morning, October 13th. She had a stroke and went into cardiac arrest at the hospital during testing. Chris was able to fly up late Thursday night and Tom arrived in from Japan on Friday afternoon. This was sudden and completely unexpected, as she had been here to help us with Dante just last month. There is a funeral scheduled for Tuesday in CT and a burial in the family plot in LaGrangeville, NY on Wednesday.

We love and miss you bunches Grandma!




Our favorite nursing staff is on today - Nancy, Adissa and Jessie - so we got a private room for our last day and night here! Yea! Dante is definitely more nauseous on this visit and is not eating anything, like they told us he would do. He tries one bite of everything and then says "no." But, other than that, he is in good spirits and luckily, this visit has been quite uneventful.

And still melting...

The nurse practioner, Cindy, came in today and told me that Dante's alpha feta-protein count was 600. I said, " they told us 1800 on Wed" Cindy: " Yes, but that was from last week's lab work, this one is from this weeks." Yea! Come on big 2-0!

I was about to write and tell you that Dante had been doing great this visit, but he just had "yuckies in his mouth" pretty bad. I knew it was going to happen because he asked for "bugs" (graham crackers shaped like bugs) and then his face went green when I opened them up. Of course, 2 minutes later he was asking to play a game on the computer, so at least he doesn't dwell on it! He seems to get sick right before one of his nausea meds is due, and sure enough - I just checked and he was late getting it today. I think I'll start writing down the times next time to avoid another yuckie. Other than that, he looks much better today, as he had been looking a little puffy from the anethesia on Tuesday.

Dante and I went to music class today. It was pretty funny. It was the music therapist, Julie, her intern, Catherine, and a volunteer named Rosalie, and me and Dante. So, he had 4 women singing songs for him and I could just see that he was thinking what great control he had over us to make us do silly movements and songs for him! I am glad they have activities like that to break up the visit.

Hopefully, we will head home on Monday again. Sleeping on the recliner and sharing a room with a family that doesn't speak English makes for a long weekend.

Jumble premonition?

If any of you out there are puzzle people, you might understand this. Yesterday, while waiting for Dante to have his scans, I picked up the paper to do the puzzles to pass the time. Now, the last time that I, a mother of a toddler and newborn, have had a chance to do that? Can't remember. When you get out of practice with the puzzles of a certain paper, it usually takes longer to solve the first ones - or at least it does for me. Well, yesterday,in a matter of minutes each, I had solved the crossword, the cryptoquote, the sudoko and solved the jumble with no help. I said to Chris - it must be a sign...

Great news! The alpha feta-protein? 75,000 when we came in August, should be 15-20 in a 2 year old. His is 1800! Huge drop! We still have a way to go, but that is significant.

The CT scan? quotes from the radiologist: "an enhancing pelvic floor mass seen on the previous study is significantly decreased in size and now only faintly visualized", "marked improvement" in the chest and lung nodules.

We are very pleased to hear such positive news. Of course, the reality comes in asking more specific questions of the doctor. It is possible for the tumors to stop responding or to plateau after a significant decrease. It is more than likely that we will need more than 4 rounds of chemo to get Dante into remission. There are of course a million scenarios, but we like the one we are having so far. It was interesting to find out that while they see a couple of germ cell tumors per year, they only see a stage 4 every few years. Many of the cases that Dr. Grana mentions seem to be teenage boys. She always sounds very positive about the possibility of Dante going into remission sooner rather than later. But she did add today as we pressed, that there are cases where it recurs within 2 years. Hopefully Breyer's doesn't mind us melting away all their ice cream for our cause.....maybe we should ask them for a sponsorship!.....

Thanks for all the melted ice cream, it is working wonders...

Mmmmm, Ketamine...

Dante woke up from his scans feeling just fine....... Never have I seen such a silly, drunken, heavy lidded, smarty-pants...... I think we're going to have to get a prescription for that stuff! He was a chatterbox too, but half the time you couldn't understand what he was saying because his speech was slurred, or he was dragging out the thought for so long. It was pretty funny. He said "Bugs!" just fine though. That boy was h-u-n-g-r-y after 20 hours with no food.

Today went well and according to plan. Mostly smiles and giggles. A few cranky demands for graham cracker bugs mid morning (you'd be cranky too if you couldn't eat for 18 hours), but otherwise, no trouble.

We will find out the results of all the scans late Wed. or Thurs.

Nurses, techs, and anesthesiologists were all very good today as well. Loving his crocs, and falling for the usual Dante charms. Letting Dante help out with the procedures has really helped him be more comfortable with everything. Of course, letting him help push the Propofol turned out to be a risk, as he was passing out before he finished the syringe. No kidding, less than 20 seconds after the injection started, Dante was layed flat and out like a light! Maybe that's the stuff we should get a hold of.... Word gets out about that, and every parent of a 2 year old will be knocking on their pharmacists door!

Tomorrow (wed.) we will go into the clinic for labs, and then on to the 2nd floor for round three. Keep your fingers crossed for lots of empty beds throughout the week!

Unfortunately, the battery died in the camera almost immediately, so not too many pics for tiday. But it's all charged up now....

Thanks to everyone who helped focus their energies toward Dante today. We appreciate all your efforts and are continually gratified by your support.

Focused Positive Energy Beam Therapy

Tuesday is a big day for us. Dante will be undergoing a mid-course CT Scan, Bone Scan, and an Alpha-Fetoprotein count.

We are very pleased to report that according to his protocol, we are at the halfway point in his chemotherapy treatment. He has been responding very well to the chemo, and the tumors have visibly shrunk, but as many of you know, Dante started with alot of disease in his body and the growth was aggressive. There is still much that could go awry. We are very encouraged by the outward signs of his treatment; shrunken masses, little ill-effects from chemo, no infections, not so bad of a haircut....

Tomorrow we will get a peek into the inward signs of his treatment. We will see where the tumors are, and how much is left. Additionally, with the Alpha-Fetoprotein count we will get some clue as to how "healthy" the tumor itself is. Theoretically, the tumors could be shrinking in size, but still producing plenty of AFP. This would not be a good result. We want to see big reductions in that AFP count, because that signals tumor death, and that would be a good result.

As many of you know, we have been using melting ice cream as a metaphor for his treatment. This is something that anyone can visualize and meditate on. Tomorrow, Tuesday the 10th, at 1pm, Dante will go in for his CT scan. We would like everyone, if they can manage a few minutes, to focus all their positive energies and thoughts on a big vat of melting ice cream evaporating away in the mid-day sun.



If you pray, feel free.
If you meditate, please do.
If you contemplate the mysteries of the universe inside the core of an apple, then take big bites and chew often.

Whatever method you prefer to use to tap into the Contiguous Energy of the Cosmos, please join us in focusing all that positive energy into the depths of our little boy, as we cross into 2nd half of our journey.

Thank you,
Chris & Jen

PS: By the way, Carina will be 3 months old tomorrow!

A true "week off"

As Chris said, we have been enjoying our family during our time off, but not necessarily the kind of enjoyment we want to continue, as we are all getting a bit of cabin fever. Everywhere I think of taking Dante to get out of the house, I also think of the number of germs at that place and then we end up staying home. For those of you that know Chris and I, you know that we like to be on the go and this is tough to just hang out so much. Dante has grown up going out all the time, even if it was just to the park or to run errands. I'm looking forward to the day when we can go a few more places and not be so worried about him getting sick.

Since we couldn't get out to too many places, we decided to have some visits instead. Early in the week Gina came by with some yummy spanish treats and shared dinner with us. Dante is still talking about "Gina's Yellow Rice! Mmm, Yummy!"

Speaking of yummy, Fran from Let's Eat stopped by with some meals from this month's menu. They look very tasty, and I think we'll be breaking into those soon.

Also stopping by this week was Aunt Laurie, who spent some quality time in the front room indulging Dante in his predilection for stuffing himself into toyboxes.






OK, Here's our update and new timeline: Doctor visit last Tuesday - all blood work looked good, ANC 2200, sodium level was increasing - (thank goodness, I was feeling guilty feeding the kid so many hot dogs!) no more GCSF injections, don't come back until the following Wed! That means an entire week off from the doctor!

Tuesday, October 10th - scheduled for follow-up bone scan and CT scan to check on his progress. Are you ready for this? You would think at a children's hospital they would devise a better system...We are to arrive at 8:45 for admit, port access and meet with anethesiologist, 10:00 injection of dye, 1:00 - scans begin. In the meantime, he is to have nothing to eat after midnight and we have to sit around for 3 hours with nothing to do, nothing to eat, in waiting rooms full of all kinds of germs!!! I called Sara, our child life therapist today, she said she would be more than happy to talk with Dante during that time and let us go to the playroom. I am not looking forward to those battles that morning. Plus, we have to make him drink about a gallon of dye for the CT scan.

Wednesday, October 11th - scheduled for hospital admit for round 3. I am hoping for another smooth round and a private room! One can dream...

Monday, October 23rd - I return to work. I truly miss all of my colleagues, but am definitely not looking forward to returning to work! I am pretend-working a few days before that to get Chris and Dante back into the swing of me not being around all day. All of those people who keep offering to watch Carina? We just might be calling when I go back to work! :)



Cabin Fever anyone?

Anyone Home?....

....As a matter of fact, no. We're too busy enjoying ourselves.

Okay, that's a bit disingenuous, after all, Dante is two, and while we are not currently dealing with any major issues regarding the 500 lb. gorilla, we are, in fact, dealing with him being two. And his little sister being 11weeks. So it's not all flowers and sunshine. But given the option, I think you can guess which "issues" we'd rather be dealing with...

How ridiculous is it that having a power struggle with a 2-year old over goldfish vs. pretzels while trying to one-arm a pacifier into the baby's mouth actually feels like a vacation?

Lots of news coming so stay tuned.