Hans Good to Go on Accutane

Hi there,

Hans had another clinic visit today. His counts seem to be recovering somewhat. His sodium was still a tad low - he needs more fries! His liver enzymes were just a bit elevated. But, nonetheless, he got the thumbs up to start Accutane. Wish us luck! I just hope we can get him to take it. He hasn't taken anything in pill form yet.

Hans was pretty pleased with a special appearance by his buddy, Dr. Rainusso, to his clinic visit. He weighed in at 11.9 kilos, and his height was 93.6 cms. So, he's just sort of holding his own for now...

The great news is that we're not due back at the clinic until SEPTEMBER 27th! I'll just have to keep you posted on other things, I guess:) Look for information about Lunch For Life to come soon!

Love, Lara

First Day of Third Grade!

Elle was off to the First Day of Third Grade Today! I think it's going to be a great year for her. All I've heard are glowing remarks about her teacher, Mrs. Foster. She'll have a switch teacher too, she'll go across the hall for Language Arts. So big! We hope to ride bikes with her to school on MWF and she'll be a bus rider on T/Th. (This will give Hans and I a little more time to get home from the clinic, if we have an appointment on one of those days.) She's ready and she's happy to have some familiar faces in her class this year. Soccer for her starts on Friday. I think we're all excited. I'm such a soccer mom...

Hans is doing well here. He seems to be regaining a bit of energy and appetite and he is sleeping better, thankfully! He used his "low sodium" to convince us, and a handful of friends, to take him to Johnny Rockets on Saturday, he needed fries! That was fun. We'll see how his counts are on Thursday. Kevin and I decided to keep him at home this Fall, rather than send him off to Pre K. It was tough to come to that decision for me, especially with how much we adored Little Saints, but now I'm 100% cool with it. It's going to be kind of fun - just me and Hans. I asked Katie and Denise at Little Saints to let us know if there's a spot in Pre K in January, but I'm not sure I'll even be ready then to send him off to school. We just want to feel totally comfortable with reading his Hypoglycemia before we really let him out of our sight.

Thanks for all your prayers and support this past year. What a year!

Lara

Thursday's Clinic Visit Update

Hi there -

We had a pretty great clinic visit yesterday. Here are the highlights:

-Hans is done with his 21-day round of oral Etoposide Chemotherapy as of today!

-Hans's labwork is back and his kidney function appears to be normal. It is presumed, based on the other results we now have on hand, that the Kidney Function Test we did back in July was just a bad test/false positive in a way.

-Hans had labwork done yesterday - his hemoglobin, platelets and white count are all great! We weren't sure what the oral chemo was doing to him - so that was a relief.

-Some of his electrolytes and his liver panel were a little off yesterday. Dr. Russell said this can be explained by the chemo. To me it explains why he has been a little more lethargic lately and not quite the old spunky Hans.

-Now that we think Hans' Kidneys are functioning normally, we can go back to Plan A for maintenance/relapse prevention which is Accutane. We'll just first go back into the clinic next Thursday to make sure his electrolytes and liver enzymes have stabilized. If so, we'll start Accutane next week.

-Accutane is a 14-day on/14-day off, twice daily medication. From what I understand it can be something of a pain to administer. We'll be giving Hans a capsule twice a day, wish us luck! The possible side effects include irritability, skin peeling and sensitivity to the sun. Hans will be on Accutane for six months, so I'm really hoping life on Accutane won't be that rough!

-The Make A Wish trip to Costa Rica was temporarily put on hold when Hans' Hypoglycemia presented itself. Now, Dr. Russell just wants to see how Hans fares on Accutane for one month, if all goes well, she'll give Costa Rica her thumbs up! We're getting the kids' passports today:)

Prayers for dear sweet little Chloe. Yesterday they saw a spot on one of her scans. We met this family on Halloween, 10 day into Hans' cancer experience. Chole was cancer free in May. I'm praying for the best results on next week's Biopsy.

I'll post more "life" stuff later...Elle goes back to school on Monday and starts soccer next week!


Lara

Hans Pics

I tried once again today to get a picture of Hans' hair. He just found this clown nose and loves it! His hair is fine and soft and rather hard to photograph! But it looks good and I love it. We have a clinic visit tomorrow and we should find out Hans' counts and the labwork from the Kidney Test. Hopefully we'll come home tomorrow knowing the new plan. Praying for the best! Hans is on day 19 of 21 days of chemo. I'm very curious to see what his counts look like, especially after missing his appointment last week.

Poor Elle tried to go have a little fun with her friend Erin at the Water Slides in Galveston, but she got sick with something (who knows, maybe slight dehydration or heat stroke???) and was brought home early! It was nice of Marianne to get her all the way to Houston where Kevin could pick her up and bring her home. Thanks!

We Did It! Registering with National Marrow Donor Program Was Easy!

After going through the Bone Marrow Transplant with Hans and seeing everything we saw, Kevin and I have been wanting to get on the donor registry. Some kids (like Serenity) go forward with a less than perfect match in a desperate hope for a cure. We couldn't believe how easy it was to get on the registry. We just walked into the Gulf Coast Blood Center (right here in The Woodlands at the College Park Shopping Center). It took less that 20 minutes in and out the door. All we did was fill out a 3-page form with contact info and a brief health history. We took four cotton swabs to the insides of our cheeks, and that was it no pokes, no blood draws! We were 'outta there', as Hans says. And it was FREE. If you go through the registry on line, it costs about $60 per person to order the kit.

If we match, I guess what happens next (about 1 out of 200 on the registry will eventually match some one), is that we'll go through further screening and then we'll see if we can help. Then, either marrow would be drawn through a bone marrow aspiration from the front or the back of the hips, or a peripheral stem cell collection with pheresis. It said it's a total of about 30-40 hour commitment for the donor and all costs are covered by the recipient's insurance.

I found it interesting that it was a lot less restrictive than giving blood. Here's some brief details, you can donate if you are:

• between the ages of 18 and 60
• relatively healthy
• not at risk for HIV or Hepatitis
• there are no minimum weight requirements, nor the same travel restrictions as with giving blood
• there is a specific need for ethnically diverse donors

You can look at http://www.giveblood.org/ for more info. My friend Sunny said that there is a similar program for Marrow Donors in Seattle, as I'm sure there is in California and other parts of the country.

I just feel that this is the least we can do in Honor and Memory of Sweet Serenity and Nathan.

Love, Lara

Do it! It's so easy! After watching people not have a match and not make it....It's simple. Put a Q-tip in your mouth and you're done. Maybe it makes a difference!?

Thanks
Love Kev.

Erin Keeps Us Away from TCH Today

Hi!
I was hoping to post with news about Hans' counts, but we won't be getting them today. We set out for the clinic today and it was pretty clear. But by the time we got to downtown (about 10:30) huge black clouds had formed. There wasn't any wind, just lots and lots of rain and lightning/thunder. We turned off the freeway to approach the med center and Holcombe had high water - it was hitting the body of some of the sedans I saw in the intersection. I made a U-turn and tried to backtrack and come in up MacGregor. Same thing. So, we just called it a day and headed home. I didn't want to try to make it through the water and then find we couldn't get out later. Houston streets have a real danger of flash floods and people drown all the time trying to clear water they think is lower than it is.
Hans seems to be doing just as well as he was last week. So - I hope his counts are still good. I left messages for everyone to see if they thought I should come in early or wait until next week. It feels really funny - we've never missed one of Hans' appointments yet!
Houston commuters (including Kevin) are going to have a tough trip home tonight. I hope everyone makes it home okay... I hope this hurricane season will be genlter than everyone anticipates for EVERYONE!
Lara

Cassie Sweebe Donates to Locks of Love

This is our little friend Cassie Sweebe. She is Elle's soccer buddy for four years running. Now they have actually swam and played basketball, and chopped off their hair together too. She looks sooooo cute! Thanks, Cassie. Thanks to the Sweebe family for all your support this year.

Lara

Best to Use Old Email Address

Hey Everyone -
Since Time Warner just merged with Comcast Communications we lost our houston.rr.com email account. Please email us at
kevinandlara@hotmail.com Sorry for the multiple changes!
Thanks for all your comments and support. It's fun to read them all...
Lara

Recent Pictures

Elle, just home from the Kiwanis/YMCA kids Triathlon. Hans and Grandma decorating cupcakes for Day +100, Hans feeding the piggy bank for the Coins 4 Kids program. Hans and Grandma Stephanie doing the puzzle book Kerry sent him for his bday (Kerry - he loves it and does at least some of the puzzles everyday).

Way to Go Elle, and Taylor too!

Hey - just a quick post. Elle completed her first Triathlon today at the YMCA. Way to go! It was a short course set up for 7 - 12 year olds - a 50 yard swim (in the Y pool), a 1 mile bike ride, and a quarter mile run. Doesn't sound bad, but then you have to add the heat! She did great! Whoo hoo!
Our friend, Taylor, was out there too.He did really well! His mama, Kelly is holding up well with her Treatment at MD Anderson Cancer Center. She got chemo yesterday, but it didn't stop her from showing up to the YMCA at 6:30 am for the Tri.
Hans did well and got to see a couple of old buds at the Y - like Thomas from Little Saints. That was our big activity for the weekend. We're all just holed up in the AC keeping cool. It's hot and humid here and the "feels like" factor was 111 degrees today!
Love, Lara

Counts Still Look Good!

We went into the clinic for a quick counts check today.
Hans did great! They've had great volunteers at the clinic with fun art projects all summer, so Elle really doesn't mind going. Hans has finally started to participate in some of the activities. They just did a finger stick for a complete blood count and Hans' counts were fabulous - his Hemoglobin was through the roof at 13.6. His ANC (part of his white count that we always pay attention to) was 3 thousand, and platelets were great at 245. Kevin and I were getting nervous. Hans has been on Etoposide for a week now. It's a little freaky to be directly responsible for giving him oral chemo. He's supposed to get it on an empty stomach, so we've been waking him up at 6 am and sort of ambushing him. At least we get it over with quickly that way. It does seem to be affecting his appetite some - he's not quite the little lumberjack he had been.
He had an episode on Tuesday where he wasn't energetic and was much fussier than usual. I tested his glucose and it was great. Maybe he just didn't want Gramma to leave. We took her to the airport on Tuesday. It was a fun visit. She helped me with a few little things around the house, we took the kids swimming a couple times, and we 'did lunch' a bunch!
We'll keep you posted on things around here. Hans is going in for counts weekly now, and his next office visit is in two weeks. Elle starts school on the 27th! We just signed her up for Fall Soccer and she's contemplating doing a kids Triathlon this Saturday. We'll let you know how that goes!
Lara

Check it out

Check out this site: http://www.coins4kids.org/featuredkidsforaugust.htm
Hans is featured in August's Coins for Kids Website. You can also check out the site and maybe consider ordering a piggy bank. We have one, we got it in Chicago. It's a fun way to save some change and do a little to help the Neuroblastoma research effort. Phil took this picture of Hans on our way to TCH right before his first surgery back in January...

Surprising News! Maybe Kidney Function is Okay afterall...

We met with Dr. Goldstein, the Kidney Doctor this week, and he seemed to think that Hans' kidneys are actually fine, that it was just a bad GFR (Kidney Function) test. He said that a lot of other numbers looked good that shouldn't be looking good with poor kidney function. It was a very pleasant surprise to hear that. It'll take a couple of weeks to know for sure. The doctor ordered one lab that takes a couple of weeks to come back. Basically if that one's good, we'll redo the GFR test. If we have good results this time around we'll assume everything's okay.
But, for now, they have Hans starting oral Etoposide. The course is 21 days on/ 7 days off. He took his first dose this morning and he didn't like it at all. So, hopefully by round two we'll have some answers about the kidney function. If it's okay - they'll switch him back over to Accutane for 6 months of maintenance.
We got Elle back and it sure is loud around here again. We have all been having fun with my mom! Hans hit the milestone yesterday of Day + 100 since he got his stem cells. This is the magic day where kids are pretty much all healed up and back to a more normal life after the harrowing stem cell transplant. It's funny - I wasn't really paying attention to that, but Kevin and I noticed about last Friday that Hans was suddenly doing really really well! We celebrated yesterday by making cupcakes and taking another trip to Chuck E. Cheese.

Lara