Round 7

We have been down to TCH two days in a row now (ugh), but only because it was impossible to get an endocrine appointment on the same date as our clinic appointment. On Tuesday we went in for our counts check and office visit. Hans' counts are looking great. I'm very pleased that they are recovering so quickly. Hans' ANC was up over 2000, HGB 11.6 and Plt 254. Chemistries are remaining stable with his thrice daily Potassium Supplement. (These are big honkin' pills!)

We also went in to see Endocrinology - which Hans has to do a couple times a year. We've recently tweaked Hans' Hydrocortisone dosage. Hans needs to take this med for life as a treatment for his Adrenal Insufficiency. We have been giving him a stress dose of this med for about 10 days while the chemo is peaking in his system. Hans looks pretty healthy so we are happy. They are running some labs next week to make sure the steroid levels are okay.

One issue we are faced with is a lack of growth:( I think that's all part of Hans being on therapy for so much of his life. He has grown over the course of treatment, but he doesn't appear to be growing while on MLN8237. The treatment for stalled growth is growth hormone, and you certainly don't have to have a medical degree to imagine what growth hormone would do to the NB. Hans is filling out though, and I always remember what Dr. Russell said to me once early on in treatment, 'you've gotta grow out to grow up.' Just as long as that tumor's not growing!!!

In other news - we're just doing the usual. I've had training in the evenings so Kev's being Mr. Mom around here:) He has been going in early/getting home early to let me head out. And, Shawn and Ellen have been helping Elle with rides to and from soccer and it makes things soooo much easier! Thank you!

Elle's fifth grade year is coming to an end and she has a flurry of projects. She has been diligent with getting all her assignments done in a progressive manner. I think she has 4 or 5 major projects due across a two week period. It's pretty cute to see her being so conscientious about her work. She's a good student and I have been so thankful that she hasn't needed much in the way of help or direction at home because there have been sooo many times when I wouldn't have been able to do that for her.

As soon as I got good at taking and posting pics, I went to charge the battery, but left it on the counter, turned around and it was gone. Did Honey eat it? Scary! A new one is in the mail via Amazon.com. I'll keep on taking more pics, but my honeymoon of Hans posing for me may be over - he's holding out his hand again...

Lara

Whew.

Wow - we've really had a whirlwind week. Kevin and I had fun watching the Astros beat the Pirates on Friday night and we ate great chicken and mole at Irma's. Saturday my mom left, and Elle was busy with a soccer game and then I shuttled her halfway down to our friend's (Caley and fam) beach house for a bday party and some knee boarding. Thanks Sheri, for meeting us and Julia, another sportyspice who couldn't miss her saturday soccer game, at the halfway point halfway into the weekend!

Hans and Kev have been having a fun/relaxing weekend.

And, I've been doing something a little different. I started training yesterday for a position with the census. The temporary/part time nature of the job appealed to me. We'll see how it works for me! I get to choose my own hours, so we'll see. It's different - that's for sure.

I haven't taken a pic since Thursday, so, sorry nothing new to post.

Mom- thanks for coming down! Always fun.

Lara

Beach

We had a great day at the beach yesterday...all of us! We found out Hans is an excellent boogie boarder. We couldn't believe how far he could ride a wave! I think it must be because he has a light body weight, but the hand-eye coordination of a much bigger boy. He was a real pro. And, he didn't complain once about being pummeled by waves and salt water. What a way to spend Earth Day:) We have avoided 'natural bodies of water' for Hans for almost two years now because he had his port in. Then, we've gathered information that he should really be okay. So, we took the risk and took the plunge and had a blast. It's nice to live a little. Hans has always been a water dog, so I am very thankful and grateful to be able to throw him into the Bay! We only live about 80 miles from Galveston Island, may as well be taking advantage of it.

We got off the hook again for counts today because Tuesday's looked so great. Sweet!
We'll bring him in for an Office Visit next Tuesday and get all checked out to start Round 7 of the Millennium.

I forgot to mention that my mom and I held a lanyard workshop in Houston on Tuesday night. Thank you Jessica, for setting up this neat event. It was my first Spanish-speaking workshop. I was glad to have a translator!

I'll post more later - but I wanted to get up a few pics.

Counts back up

Hans and Grandma Stephanie on the Ferris Wheel

Kelly and Elle at solo and Ensemble

Shane and Elle at Solo and Ensemble
Hi,
Hans' ANC was up to 1300 yesterday - good, b/c none of us really wanted to deal with it being low much longer!

My mom got in and we've been doing a lot of stuff since then. We made a quick stop on the way home from the airport to the Houston Aquarium for a Ferris wheel ride. We've done every thing from attend a baptism ceremony - sweet baby Jace!- to get the brakes done on my Honda. I've got a haircut, and I am pretty sure we've accomplished a few more things. Hans has been doing well with his teacher, and Breanna is working with clay with him out on our front porch now.

I think we are going to have some fun tomorrow - we're going to play hookie and go to Galveston! Friday night Kevin and I are going to have a "date night" for our anniversary of dinner and the ballgame. Then, the week will be over before you know it.

Elle and her friends did great at their solo and ensemble event on Saturday. I've never been a band mom before, so I'm learning the ropes.

So, it's mostly good news from here. Hans has had some random additional arm and back pains. But.... we're keeping the docs informed and keeping our fingers crossed. I feel thankful and grateful that round 6 went off without a hitch, and that counts look to be up to start Round 7 Thursday next week.

Thanks for your thoughts and prayers that Millennium is going to get rid of a bit more of this disease!

Lara

Low ANC

I'm trying to be better about posting and taking pictures, but Hans is making it easier on me because he is posing a little bit. For sooo long all I'd get would be the back of his hand!

The good news is that Hans' HGB is 9.8 and Platelets are about 235 here on Day 9 of Millennium. Yay. We've got that round behind us - I was pleasantly surprised that this even round, round 6, didn't really cause us any bad side effects like rounds 2 and 4 did. BUT, his ANC is pretty darn low at 345 today. We got labs drawn at our pediatrician's office again here in The Woodlands and it was FAST! Wow - we save about 4 hours, and a lot of expense in gas and parking - so I'm a happy mama.

So, we are laying low. Hans is good at entertaining himself. This week water balloons and some of those punching balloons are doing the trick. Fun fun fun...

I'm trying to work on making some travel plans... which is CRAZY when I can't really predict when we'll have to be in Philly. But - we are going to be going to San Antonio for Memorial Day weekend with Elle's soccer team, and I just registered us all for the CNCF conference in Chicago in July! I'm excited. We went once back in 2007 and haven't been back since. There is much valuable info at this amazing conference. www.nbhope.org I'm hoping we can make our annual trip to Seattle this summer, and we are starting to daydream about taking Hans to the Nick Hotel in Orlando sometime around Thanksgiving... Wow - that's a lot of planning in a world where you can't really plan. How are you supposed to do that????

For now, I am just try to follow Hans around with Hand Sanitizer and limit germ exposure to reduce our risk of spending the weekend in the hospital with fever. I get two word text messages from Kevin that say "hand sanitizer".

Thanks for checking up on us.

Lara

Cookies Delivered/Counts Checked

I took Hans down to TCH for a counts-check today. Everything (including Potassium, HGB, and Platelets) was great - except for the ole ANC... It was only 500... and on Day 6! Yuck! That means we are likely to bottom out much lower on about Saturday or so. The day my mom gets here for her spring break. The plan is to check counts locally on Friday and hope to do fine until next Tuesday when we go back for more counts. Avoid crowds and germs... we know the drill. But, thankfully, our weather couldn't be more gorgeous and we can't spend enough time outside. It's gonna get hot soon.

Hans is in good spirits, so then, are the rest of us!

Elle got an invitation to participate in select or competitive band with her clarinet. She's got a pretty good competitive streak so that should be a good fit for her. Last I heard she was tied for first chair at her school/in her grade level. She has a band concert/solo performance this Saturday. I'm just happy that it lands perfectly between either soccer game, but, unfortunately, well before my mom's flight gets in.

Here are a couple more pics... Yesterday our girl scout troop (plus Hans) delivered over 6 cases of cookies to the Interfaith Food Pantry - Thank you friends/family/neighbors/donors. The girls got a nice tour of the food pantry and I am hoping they will commit to being good contributors for years to come.

Lara

PS - I think our troop still has about 35 boxes of cookies to unload. Let me know if you "need" a box. All out of thin mints.

Reception

Elle and I were able to attend a DAR (Daughters of the American Revolution) reception yesterday in Conroe. Elle's teacher had given her students an assignment that then became an entry in a local competition. Elle's poem took first place in the Chapter (and won $10:) and went on to State Competition. It was neat to see the folks all dressed up in revolutionary war garb!
She allowed me to copy here. The theme of the contest was - American, Land of the Free, Home of the Brave. She wrote her entry about FDNY/9-11. (I couldn't capture the whole thing, but she did add they as the second word in the last line, and she decorated the page as one of the towers.

Hans has started drinking more water. This is good.

We ran around like crazy yesterday, and now are looking forward to a day of relaxing, running errands and eating well! We had to replace our grill, so Kevin picked one out, put it together and has been cooking anything anyone asks. It even has one of those side burners so he can cook 'smelly' things like bacon on it. That's what we're up to. Day 4 of Millennium is going well. I was thrilled to take Friday off clinic since our NP said a CBC wouldn't be necessary with such gorgeous counts on Tuesday.

Lara

Earth Day Festival Today

Hi -
Just a last minute announcement for those of you in The Woodlands.
We'll be at The Woodlands Earth Day Festival today from 10 - 3 with a lanyard booth for the CNCF.
If you're at the festival, look for me, Charon, Carmen and Ginger in the green flag area.

Hans and I had a nice time last night - we made a trip up to see Vickie (and Walter and Willie) and many of Erin's friends for a workshop yesterday. Meanwhile, Elle had a sleepover with her soccer pal Toni and Kev had a guy's night out at the Astros with some of his work buddies. Phillies beat the Astros 8-0. Nice to have the option of rooting for Phillies since this is not going to be a great year for the Astros.

Thanks to Toni's family to getting Elle to her game in Katy today. We hate to miss out.

Hans is doing great on Day 3 of Millennium Round 6.

Lara

Another Easter Pic

How fun! Shannon sent this pic of Elle and Seany boy at the park on Easter Sunday. Supercute! Had to share it!

We got thumbs up, meds in the mail, and started Round 6 of Millennium today. We also tried to go see How to Train Your Dragon, but Hans opted for some park time instead. I am getting pretty good at flying our kite. It was the best $2 I've spent all year. Hans was flying it at one point today, and it got caught up in some branches really out of my reach. Just exactly at that moment a really tall gentleman walked by and reached up to easily release the kite. Sure is nice when life works out that way.

Lara

Made Counts!

Our sweet neighbors Dan and Cindy gave the kids these confetti easter eggs...Zach and Hans busting cascarones on each other's heads in our driveway. My friends Marlene and Veronica clued us into this fun Easter Egg tradition from the hispanic culture. Elle said it is WAY better than plastic eggs with candy. You cut the tip off the egg, drain, rinse, dye, fill with confetti, cover with a little tab of tissue paper, a lot of work for a lot of fun!! (Or, you can just buy them at HEB for 1.99 a dozen. I think that's what I'll be doing next year)

Zach and Elle and cascarones. Thanks to Alana and Darren for sending these pics. I'm Ms. Chaos over here and could not locate my camera until about 10pm Easter night!

We went to the clinic yesterday. We were pleasantly surprised that Hans' ANC was WAY UP at 2780. Hans HGB was okay at 9.9 and Platelets looked fab at 188. So, yay, it looks like the lows on that last round were from the little virus he was fighting off. We'll see how this round goes. We have to get official thumbs up from CHOP, get the meds via Fed Ex, and then start off on Thursday hopefully with Round 6 of Millennium.

Everything is okay. Here we are having great, beautiful days, staying on top of everything, getting things done, taking care of business, and then all of a sudden, I'm giving Hans an airplane ride in the living room and he says - ow, my shoulder hurts!!! Argh! That same right side. You'd think with scans clear in that area just SEVEN days ago we're okay on NB there. You'd think! You'd think it's maybe sore from all the swinging, throwing the ball to Honey, cracking cascarones over everyone's heads, and general fun he's been having! I guess we'll put that on a watch and let the docs know we're watching it. Fun, fun fun!

Thanks for checking up on us!

Lara

Got $1.99?

Hi,
You have to check out this awesome little video clip about a girl named Abby Miller singin' for a cure! http://www.youtube.com/watch?v=PwoZaNC0kuA Then go to artzuno.com to download the song for $1.99 - all proceeds go to Band of Parents in NYC fighting for a cure. This link has been popping up on other NB kiddos I follow, especially those that know this little girl Taylor Love, that Abby is singing for. It's so sweet. Check it out.

Other than that, we are great. We had a pretty awesome Easter Weekend! The bunny was good to the kids - I am embarrassed to even tell you how good.

We had a nice three day holiday with playdates, and a GS field trip to a ceramics studio, and an Easter picnic in the park with some friends. It was nice.

Elle got a new set of clubs so she and her dad went out for some golfing. We are starting to get geared up for the Amazing Grace Golf Tourney this June. Please email me at kevinandlara@hotmail.com if you'd like me to send you the flyer/registration form/or sponsorship info. It's such a beautiful day!

We actually got to go and get a CBC here in The Woodlands. This was a first - the whole thing took about 7 minutes and it saved us about 5 hours of our lives. We are hoping to be able to this at least weekly, needing to go down to clinic at least once per week for the blood chemistries and/or office visit. We'll go down tomorrow to see if we possibly make counts for a start of Round 6 on Thursday! Fingers crossed. Prayers welcome.

Thanks, guys!

Lara

PS - thanks mom and PL - sure, you can always send me a donation. I'll turn it in. But, I do think there is a donation button on that active.com website as well!

Save the Date!

Save the Date for the NB HOPE 5K Fun Run/Walk!

This may not be the final approved draft of the flyer, but put it on your calendar. My friend Tamiko has been working very hard to make this happen. Can't wait. It's my birthday so come on out and walk or run with us!!!!

***** This is a fundraiser entirely for research and parent education for the CNCF