More Photos

Here are some more photos. The top one is the new one I just sent in to use for Hans' Lunch for Life Lunch Sacks. Elle holding up her bday gift - an elizabeth swan halloween costume - sorry I didn't rotate it first, it's kind of hard to go back now...Hans up on the counter, and Hans and Grandma holding up the cookies they made to take to sissy's school on her b'day.

This weekend we're going to Elle's soccer game and we hope to hit the pools again on their last weekend, Elle also has to take a Girl Scouts swim test tomorrow... Hans seems to be doing really well. He must have worked the excess steroids out of his system. He starts his second round of Accutane on Monday!

Lara

A year ago today...the 28th

So...Again, I can't stop thinking about it!
One year ago today, I really didn't know what to do. Our doctor was supposed to call us back and tell us what to do next. I thought Hans would be put on antibiotics and have to stay home from school. We didn't hear back, and then it was time to go into Little Saints where I worked and Hans was in a Pre-K 3 class two days a week. We went and I was frantically leaving messages for the doctor. They did an opening prayer at school that day and I passed on as much information as I had to the teaching team - "don't let Hans use straddle toys!" Then, I waited as the doctor's office returned my calls. It was a medical assistant getting back to me. Each time she would give me one piece of information, I'd have another question. Then, I'd have to wait for her to find the doctor and call me back. By the end of the day I think I must have had 6 calls back from them and all I knew was that I was being referred out to a Pediatric Urologist at Texas Children's. They first tried to give me an appointment three weeks out. I told them that was unacceptable. I had absolutely no direction as to how to take care of has with his "possible infection or injury", I knew there was no way I could wait three weeks! My coworker was getting worked up about what was going on too. She phoned her father-in-law, a doctor. He suggested I take Hans right down to the Texas Children's Hospital ER. But, for some reason, I thought I'd just wait and follow the advice of our doctor. We would wait for the appointment with the Pediatric Urologist... Meanwhile, Hans was sidelined from his first ever soccer team. However, Kevin was still coaching his team. We were just keeping him off straddle toys and waiting...

Lara

Office Check up

Hey Everyone,
We had our office visit today. We also made an appearance at the Parent Meeting. It was nice to see the familiar faces. Hans did just fine and he got his next prescription for Accutane. He'll start back up on Oct. 1st. I'd say it has been nice to be off Accutane - but we did run into some problems needing to triple his steroids first for a fever and then for a "little" fall at the park, so I don't know... it's been kinda crazy. We did get approval for the Make A Wish Trip from our doctor. At least they can get the ball rolling now and maybe we'll get to go during the dry season... The cool thing is that Hans' special buddy, Dr. Rainusso, will prepare a letter in Spanish for any doctor Hans might need to see in Costa Rica. Kevin is fluent in Spanish, so even if we did have a need for a physician at least we could communicate with them! We'll keep you posted.

Everyone is starting to get excited for this ranch trip. A few of the staff members from TCH are going. We leave on Friday next week and get back Sunday. It should be lots of fun! It's so generous of the owners of the ranch to donate this trip.

Hans has scans starting next week, then he gets a week off, and goes back the following week for an MRI. His audiogram follows on November 2nd. Thanks for praying along with us for clean scans for Hans, Patrick too. He's been doing well in Kindergarten! It sounds like Accutane is not "fun", but he's doing okay on it - and almost halfway done now! It must be time for Colby and Carlie to repeat scans, too. We were all doing it together at the same time this summer...

I can't stop thinking about it. One year ago today Hans had his first office visit related to his Neuroblastoma symptoms. We had noticed that his left testicle was a little swollen and discolored (brown or blue, like a bruise) in one little spot. I had noticed it for four days, but it would look smaller in the AM, so I would think it just went away, and then by the PM it came back. When we went into the office visit, the doctor had actually a bit of a look of shock. But, he didn't say the "C" word, or even indicate a concern. We were referred for a STAT testicular ultrasound. I had just enough time to pick up Elle off the bus and get over to the hospital. I cancelled the Girl Scout camping training I was scheduled to go to that night. We went to the ultrasound at a complex near the hospital here. Hans did great, but we really learned very little. We left the place thinking it was possibly an infection or an injury. Everyone kept asking us if Hans had hurt himself, but we couldn't remember any specific incident. I had asked if sterility was a possibility. I was reassured that no, probably not. Hans and Elle talked a little about that on the way back home. Hans told me that he wanted to have three babies!


Lara

Weekend Photos

We've been busy having fun and celebrating Elle's 9th Birthday while Grandma Kathy is here. Hans has been having some of his wild mood swings, though. We don't know if that's because he was tripled up on steroids most of last week... or What? But, he did have fun getting a swim in. It's too bad Woodlands Pools close for the season next weekend.

Hans has his next office visit on Thursday - I'll update you after that.

Prayers go out to the family of Haleigh Cassada, she lost her battle with Neuroblastoma on Friday night. She was a beautiful little girl, who was so clearly loved by many many people.

Our dear little friend Chloe needs your prayers again. After being released from the hospital with a clean biopsy, she was starting to get migraines. After a week of the headaches they found some tumor in her cranium. What a roller coaster for her family. They are very optimistic and Chloe is now receiving radiation. She will fight and we will be there for her 100% in prayer.

Lara

Hans takes a leap!

Here's Hans jumping to me at Ryan's Grandma's house last week. I thought he was feeling punky on his Accutane but he sure wasn't. He really rose to the occasion - his first time swimming in couple of weeks. He has been "off" Accutane since Monday. It's nice - but with the fever he had, we've had to triple him up on his steroids, and now we're weaning him off, hoping to get him back to Normal... thankfully, he hasn't had more fever.

We're having fun with Grandma Kathy! Hans worked a trip to Johnny Rocket's out of her for lunch today:)

Lara

Thursday...

Hi Everyone,
Well, since our last post we have had ANOTHER little adventure to TCH. Can you believe it? We are starting to! Hans just had a bit of a fever on Sunday night, so at 11:30 pm I called the on-call docs. Guess what they said, "Come on down!" So - Hans and I arrived at a very very busy ER at 1:10 am. His fever seemed to disappear. So, we just spent the night and got two shots of broad spectrum antibiotics and were on our way home by 8:30 am. He had a bit more fever later on Monday, but then that was taken care of by a little Tylenol. He got a full work up at the ER (sans CT Scan this time, thankfully). We guess it must be a virus, but we're learning how to take care of Hans without his Adrenals in all situations. So, hopefully it's just a learning curve and we won't be making such frequent trips to the ER always...
Please keep little Haleigh Cassada in your prayers this week. She is up at TCH still in the fight of her life. I'm praying for a miracle for her.
I want to share a big thank you to Jim and Carmen Smiley and his work, Merit Parking - they just donated $500 in Hans' honor to the Children's Neuroblastoma Cancer Foundation for Neuroblastoma Research. Thanks so much! If you're in Houston, looking for a place to park, choose Merit Parking! :)
Grandma Kathy Flies in today for the weekend. Fun, Fun, Fun! We got the news that our next scans are kind of sort of spread out across October. We go in on the third and fourth, then the 18th and 19th. Then, his Audiogram is on November 2nd. So, we hope more good news will slowly trickle in across the next month.
Lara

Making a Mark Art Show

Here are some pictures from today's Making A Mark Art Show at TCH. Elle's "The Right White Rose" painting was one of many beautiful pieces of artwork on display. After the show we went downtown to eat at the original Mama Ninfa's restuarant. It claims to be the home of the original fajita in 1959!

On a more serious note: A fellow patient at TCH, Haleigh, needs your prayers this week. This little girl is fighting relapsed Neuroblastoma. She just got back from her Make A Wish trip to be admitted to TCH. Her tumors are spreading, her organs are starting to shut down and she has now been taken off chemo. Thanks for praying with us.

Love, Lara

Lance's Renewing War on Cancer Petition

I came across this link. It's easy to sign, and it seems like Lance is right - Cancer needs to be on the presidential candidate's agenda.



Check it out: http://www.livestrong.org/site/c.khLXK1PxHmF/b.3367689/k.685B/Presidential_Cancer_Forum__Thank_You/apps/ka/ct/contactus.asp?c=khLXK1PxHmF&b=3367689&en=5nKIKNOmH9KyEHNkG5IyFIMrGfIFLTNrFcIGJQNALrG

Thursday

So - the storm totally missed us. Poor Beaumont. I guess it got hit again.

Oh, yeah, and the other exciting news is that Grandma Kathy is flying in to be here for Elle's 9th birthday next week. Pretty cool:) Kathy - Don't forget to bring a swimsuit!

Lara

Hans is Holding His Own...

Hi Everyone -

I know I haven't posted in a while... Hans seems to be holding his own on the half dose of Accutane. I'm trying to find out if we can stop him tomorrow or not. That would be Day 14, but I'm not sure if our 4 days off count? With Tropical Storm Humberto coming in, I'm not sure if we'll hear back from the clinic tomorrow? We'll probably be just fine up here in The Woodlands, but the local news is saying 10 - 15 inches of rain and possible flooding is expected. Kevin's work let everyone go home at about 3pm today - to prepare their houses for the storm.

Elle had her first soccer game on Saturday. It was so hot that Hans only lasted about 10 minutes on the sidelines. The parents were estimating that it was about 110 degrees out there. But the good news was that Coach Brad and the other parents were really good at taking care of the girls and making them drink, and providing shade with an umbrella! It was rough. Quite different than my experience playing soccer in September as a kid in Seattle!

Elle also started Girl Scouts back up. I was the troop leader up until diagnosis last year. I truly appreciate the way Debbie Conlon and Laurie Miller have taken the whole thing over. There are twelve girls in the troop. Last night I was struck by the fact that six of them are going on their fourth year with this troop! I think it's great. The girls will take their first camping trip this October!

Elle is a participant in the upcoming 'Making a Mark' Art Show at Texas Children's. She did a painting called The Right White Rose. It's pretty! We're all planning on going down for the opening this Sunday. All participants are children whose lives have been affected by Pediatric Cancer. For some reason we didn't think to submit one of Hans' paintings. I think at the time that they were promoting the event, Hans must have been just post transplant, and not too interested.

Those are the highlights this week - we were able to spend some time with Leigh Ann, Serenity's "adoptive" mom, over the weekend. She is doing great! She really hits it off with Elle, and she finally got Hans to come around.

Hans has rediscovered all of his old toys. He pulls out as many as he can everyday. I think he plays with almost all of them. He colors and draws (and yes, watches his shows too). It seems like he's just thrilled to be able to stay put. I tried to enroll him in a Kindermusik class because I thought that a mommy and me music or art class would be restorative for him. He wouldn't even step through the door of the trial class. I think he's telling me what he needs for the next few months. He is happy to explore right here at home with lots of frequent bike rides, trips to the park, play dates, and for some reason his most favorite thing to do is to go to H.E.B. (a Texas Grocery Store). All the workers love him up there, and at our little Exxon convenience store, too. The sweet ladies up there never let him pay for his Icee. In return he gives each one of them a hug with his special pat.

I thought I should post an update now. With a big storm coming there's always a risk that we lose power or internet for a bit. But, I truly hope the saying's right, lightning doesn't strike twice!

Lara

Two Steps Forward, One Step Back

So, things aren't going quite as well on Accutane as we had hoped. On Monday, Hans complained of headaches. We realized that he had had some on Sunday, too. We called the on-call oncologists and they said to bring him right down to the TCH ER. We were surprised, but of course we did as we were told. There, they did a CT scan on Hans' head. Thank God, it was normal. The fear was a tumor, but I guess other problems are possible with Accutane like brain swelling or a Pseudo Tumor! His vision and neurological tests were fine. And, we were actually in and out of there pretty quickly. It just sort of wiped us all out. Luckily, Elle had been on a sleepover and our friend Wendy just kept her all day so that she didn't have to go through the whole ER ordeal along with us. That was nice.
So, for now the plan is to wait until tomorrow to make sure that the headaches are gone, and then try Accutane again on half of the dose he was getting. I hope this will work. We shall see... He actually didn't have headaches yesterday:)
I just learned that another little girl, Haleigh, that we know through TCH is having some painful symptoms related to her relapsed Neuroblastoma. Please consider including her in your prayers this week, along with some of the other kiddos fighting relapsed NB like Carlie, Colby, Ryan (a.k.a. Batman) and Erin...
Thanks, Love, Lara

Whose fish is this?

This is my new fish Wriggley! I worked really hard all August to earn this guy.
Love, Elle

Quick Good News Report!

Hi,
I just wanted to share some happy news: Our little friend Chloe's biopsy came back clear! It was just some scar tissue and other non-tumor matter that they saw in the scan! Wonderful! Little Chloe went to third grade for two days, then checked into TCH for the biopsy procedure on Wednesday. What a joy that she can just check right out and go back to school. I know the surgery was rough on her! I am just so happy to share this news:)

On another happy note - Hans is taking his Accutane quite well! I am actually beside myself. Yesterday was Day One on Accutane. The morning dose was pretty rough, but he was totally compliant for the evening dose. I bought a can of Reddi Whip and I put just about a teaspoon of it on a spoon, and put the bright yellow jelly bean-sized yellow pill right on top. I never thought it would really work. But, he just swallowed it right down and washed it down with juice. This morning he woke up and said, "Oh, did you want me to take my big yellow med?" And I said "yes," and he did it just like that!

We aren't doing much this weekend - maybe we'll work on the yard and hang around. Elle had her first practice last night. The coach seems really nice! Lightning and thunder hit about 5 minutes into practice. The girls were so disappointed that the coach moved them into a covered pavilion to practice juggling and throw-ins.

Lara