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

New Bike

I figure it's about time I posted a pic or some fun news, so here ya go.

Santa brought Hans this cool bike - Transformers Motif and all.

Our weather was perfect on Monday and Hans had perked up some, so we went on a ride, quite a bit further than we'd usually take him on his old, much smaller bike!

New bike = new freedoms!

I took the girls (Elle and her friend Kelly) to our local winter skating rink last night and Hans and Kevin went out and invested Hans' Christmas money in a new Nintendo DSI (hand held video game), his systems see a lot of wear and tear with all our travel. It's good to have one working well with our next trip coming up next week:)

I would like to extend a thank you to the National Childrens Cancer Society! We just learned that they will help underwrite many of our travel expenses for our trips back to CHOP. This is certainly a blessing, so I wanted to share the resource with any other families who might find themselves in a similar situation. It is wonderful that there are such resources available.

On the not-so-fun side, Hans was up in the middle of the night complaining of back pain!!!??? He shed a few tears, needed a pain med and a hot bath at 1 am. So - I don't know what is happening here, but these mystery pains do often pop up in the days before scans.

Lara

Blood/Night at TCH

Yesterday we went in for labs up here locally. Info was exchanged rather slowly...we wound up getting word at about 3pm that Hans was to come in for blood! We actually wound up getting admitted to the 9th floor, starting blood at 10pm, finishing up at 2am and staying the night rather than drive home on little sleep. Crazy! I guess I did jinx myself in my last post.

The good news: Hans didn't have a reaction to the blood this time, and his ANC is through the roof at 2800! ! Bad news Platelets were low at 37, so it's back down to TCH tomorrow for more labs and possibly platelets! Gosh. I was a bit bummed to see these numbers. I had hoped to make some fun, regular Christmas break plans, like taking the kids to Pump it Up, Jumpin Jaks... but with these counts, maybe Chuck E Cheese is more in order??? Who knows!

I forgot to mention that my mom left the day after Christmas. She had to get up to Seattle to help with Papa, and to be there for my Aunt Pati as she underwent a delicate eye surgery!!!

Kevin's back at work this week. That's the scoop for now.
Thanks for checking up on us here on Day 15 of Round 17....

Lara