Mid Cycle

Things are going really well for us here, mid cycle. Hans is actually usually doing fine when he is actually taking his med, it's the week that follows (Days 8 - 15) where he can have a hard time. I'm thrilled with how he is doing and my fingers are crossed that we'll sail through next week. Scans happen just after Valentines Day back in Philly.

These two pics from Saturday morning - grooming Ginger before Hans and I got to do a trail ride. It was awesome - the only thing that I was nervous about was that I was the one holding the lead. Hans took the reins, but moms or dads hold the lead! Yikes - but it went well. We are at the Conroe YMCA Equestrian Program...it's great! He seems to have had more energy lately. We spent all afternoon doing yard work and then went out to our friend Dana's 40th b'day celebration, and he was up and 'partying' until 11 ;) Pretty good!!!

Aunt Susy asked about Elle - let's see - the big news is she won her student council bid last week! She's also on one of two teams of kids that reads the announcements on the Wilkerson News Network, she just had her last volleyball game of the season thru the YMCA, and soccer is gearing back up. They played their first 11 v 11 scrimmage yesterday...the kids play 8 a side til the age of 13, then they go to a bigger field, more players, etc. We are all excited about that change next year. AND... we had parent info nite for the incoming 7th grade class at her Junoir High. I understand our choices a lot better. We figured out how many Pre AP courses she'll take (3 out of 4- we decided not to do Pre AP Texas State History) and she has decided to go out for Cross Country since there is no "real' soccer at the Jr. High level. She just joined Running Club at her school she's loving it. She is also selling girl scout cookies, well, sort of! We're kind of slacking at that this year.

Kevin and I keep trying to squeeze rides in, but the hardest part is keeping huge chunks of our schedule open for the long rides!!!

Round 19

Hi,
Sorry it's been a little while! When things are going well, I tend to turn into a bit of a blogger slacker.

Hans is doing great. He handily 'made counts' yesterday with HGB of 10.3, plts 214, ANC a whooping 8,000. We talked to the CHOP team and the TCH team, the both said the high ANC is 'safe', but we may lower his dose of Neulasta just a little bit. We just got the thumbs up from CHOP to start Round 19 of MLN 8237 (Millennium). Round 18 was just so much better in every way than Rounds 16 and 17 - I started to wonder if he was REALLY swallowing his meds (he was).
Anyway, this round alone, he has been able to enjoy more playdates, outings and get-togethers than usual, and he started up his new activity/horseback riding. Our lesson was cancelled this week for rain, but if the weather is good, we should be going on a trail ride this weekend. I'll get pics.

Hans' teacher gives him lots of opportunities for homework. Hans usually gets dramatic about doing homework for me! It's a struggle.... He is still working well with his teachers, but doesn't relish doing 'homework' after they leave. We went through a process but eventually got his big "Timeline" project finished this weekend. Here he is below, looking upset about it all! UGH. At least he gets to 'chill' with our cat, Orange. He is Hans' guard cat. He spends as much time as he possibly can with Hans. Apparently Orange doesn't mind the homework piling up on him.

Thru the Roof

Wow - we went into clinic this morning and Hans' ANC was through the roof, so much so that I'm not even sure it's a good thing. I'm waiting on that. HGB 9.4, Plts 132, and ANC 16,000! Yes, an order of magnitude different from it was a week ago. I'm not sure - the Neulasta is obviously causing that, but is it too much of a good thing? We're asking our team if perhaps they can give him half a dose of Neulasta next time. no fever, our Pediatrician's eyeballs bulged out when she saw that ANC, as it is a red flag for an infection. But I think with Hans it's a Neulasta thing...

We are enjoying the good times while we can - hoping they never end!!! Hans started a Horseback Riding class last night. I didn't have a flash camera with me, so I've got no pics, but I'll get some next time. We learned, together, how to catch a horse, lead her, groom her, clean her hooves... Horses were never my thing - in fact I was pretty fearful of them when I was a kid. Those fears seem to be gone. I guess I've got bigger things to be afraid of these days! Riding will follow in a week or two, this session of "Lead Line Club" lasts about 8 weeks. Hans is certainly an animal guy. He is fully calm, focused and captivated by a horse, or really any animal.

That's the scoop! Looking forward to what we hope will be a greatly 'normal' week, and hoping we'll make counts no problem to start Round 19 next week.

Lara

A few girls were over last night and they joined Hans for a few games of Wii's Just Dance 2.

I managed to get a few seconds of video. I know I've been a slacker with pictures and video, so

here's about 30 seconds of fun...

Lara

Beautiful Counts

I'm having a little trouble with getting a post up tonight for some reason??

I just wanted to let you know that Hans' counts were beautiful today!

HGB 10.7, Plts 362 and ANC 2000!

Hans got his Neulasta today, after getting his labwork done.

We don't really know what to attribute these counts to...it doesn't seem like the Neulasta should be responsible for it,
but we'll certainly take it!

Reprieve

This is bizarre! I better knock on wood or something. Here we are at Day 7, Round 18, and not a single side effect has popped up. We went in for labs and got a great report...ANC 1100, HGB 11.1, Plts 364. Whoa! I suppose the Neulasta could actually be responsible for fending off some of the side effects, but I'm surprised, I was expecting a more short-term effect. We'll see how the next week goes, but so far so good. Hans has been cheerful and wonderful! It's too cold here to get out much, but of course, we're enjoying the good times.

We go back in on Thursday for the Neulasta, an Endo appt, and more labs. I'll keep you posted.

Lara

back in the swing

We made it home with no hassles and a safe landing. Hans was a little reluctant to start back up with his teachers after a loooong winter break, but he came around. He is learning about the water cycle with his science teacher. He's going to have a teacher change up at semester - we will welcome Ms. Kathy back after recovering from her surgery, and Mrs. Yoakum will move along to the next child. Hans has overall done well with his homebound instructors and we've been very pleased!

We are back into the swing of things. This is one of the busiest times of the year, when v'ball and soccer overlap on top of cookie sales. Glad to have good news under our belts to forge ahead. And, Kevin and I are still getting ready for the BP MS 150! We try to get one long ride in a week - so far 41 miles has been our longest ride. Kevin is faster and stronger than I am, but he is teaching me the ropes. It's nice for us to have a fitness goal and have something big to do together!

It's already Day 4 of Round 18. We go in for labs locally here Monday, and then again on Thursday down at TCH where Hans also has an Endocrine appt and he'll get his quick shot of Nuelasta.

That's all for now - Lara

Yay for good news!

Quickie update from Starbucks before we head out.

More good news. Scan is still positive, only very FAINT. Can you dig it?

We can!

We saw Dr. Mosse today, whom I honestly (crazily?) think of a Doctor/Goddess,
and she listened very closely to our concerns of Hans' past rough 2 rounds. The plan is
to start Hans on Round 18 at a the same 60 mg dose of MLN8237, to watch him very carefully, and to have a low threshold for doing a dose reduction at the next Round. Hans is right on the cusp of two doses, so if he has another
rough round with mouth sores and transfusions, we'll go ahead and drop him down a bit.

Dr. Mosse also said she wished she had time to look at Hans' scan from 13 months ago, that first lit up positive in this spot, and compare it to this scan. She didn't have a chance to do it today (old scans get archived and aren't instantly accessible, I guess), but she is sure this scan is much fainter/smaller than a year ago...

Counts were surprisingly good. HGB 11.1, Plts 130 and ANC 4300! Go Neulasta... Whoa. Even our NP didn't think we'd be making counts this week.

So we're outta here. We'd like to thank the dear Tenneson family for rolling out the red carpet for us yesterday.

Thanks for checking up on us and for your thoughts and prayers for our little boy!

Lara

meat only please

Bacon, sausage and ham steak, please! He did top off breakfast with a short stack.
Hans remains well-fed in Philly.

We just go in for MIBG injection in a little while, where Hans gets his port accessed, we draw labs , and then get a dose
of the nuclear med which will illuminate tomorrow's scans.

Kids are back in the room, cozy, coloring, and working ahead on valentines to deliver to their class next month:)

Lara

we've arrived

Hello! We are here at the Philadelphia Ronald McDonald House. We actually haven't stayed here since last March - it's been a while! We are thrilled to have Elle along with us. She dropped off a big book project at school on her way to the airport. Who knows how much work she'll have to make up, but it's worth it to have her with us! She actually is our good luck charm for travel...we rented a car this time and our guy spontaneously said "I'm gonna put you in a better car." He passed up the Aveo we had reserved and put us in a small SUV. Hey - with all our crazy bags, we'll take it, thanks!

The snow is somehow all cleared up here. It's pretty cold. We are planning an evening of watching movies, coloring and going to Hans' favorite 'chips n salsa' restaurant, Mad Mex. We are also looking forward to hanging out with the Tenneson family while we're here.

Nervous about scans , as always, but praying for great news. Thanks for checking up on us, and thanks for your notes, texts, calls and emails of support as we find ourselves in scan week once again.

Lara

Happy New Year!

Happy New Year!

We are happy to count yet another Holiday spent at home rather than at the Hospital!
Well, in the driveway, that is. We pooled our fireworks resources with the neighbors in an impromptu
celebration. A count down of 'classic rock party songs' played out of Kevin's white truck in the driveway,
and best of all, every one was safe and had a good time - no injuries, no fires:)

Here's to a happy, healthy 2011!

Peace, Love and Cure,
Lara