My camera and computer are cooperating again

the night we went to Kemah, there was a thunderstorm, followed by an incredible full rainbow...

The Catch!

Kevin and Hans on Rides!

Butterfly lands on Elle

Hans working on his "Making a Mark" Entry

Off to the pool!

Grandma Stehpanie's Last day - gosh, I am behind on posting pics...

Hans and Jack (our neighbor) at the "fishing party"

Fake Fever???

Hi -
So - first, I'll update on yesterday - we were in and out of there with a quick office visit, I got all my questions answered by Dr. R. I have a rough timeline of the next three rounds of chemo. We will start Monday. His counts are all looking good! He was in great shape.
And then...
Today he woke up normally. He wanted his regular breakfast. But, he didn't eat any of it. All he wanted to do was rock with mommy and then lounge around on the couch. We quickly got meds in him and I took his temp. It hit the exact witching mark of 101.0. So - cancel the swimming plans, call the docs, reserve a room in triage -- relatively good news - avoid the ER. And then, once in clinic, the fever never came back. I am telling myself that the best kind of fever to have is a fake fever. He was given an IV antibotic (he is becoming better and better at having his port accessed and de-accessed). Then, surprisingly, we were able to come home. Hans' ANC (a white count component) was high enough for him to be sent home! We will probably treat him pretty gingerly this weekend -so I guess it's good that we went out and had all of the fun last weekend.
Let's hope for no more fever, and that nothing grows in his cultures!
I did get a chance to see our cute little friend Erin B. yesterday - she got good news of significant shrinkage!!!
Off to Elle's Girl Scout Twilight Camp week-end presentation. I am happy that we are able to make it.

Lara

Tuesday's Counts

Hi Again,
We went down to clinic today for counts. Hans' HGB is a bit low at 8.9, but not enough to transfuse. His Platelets, Calcium and Chemistries were all okay in normal range. The plan now is to go back in for counts and an office visit on Thursday, and then we'll most likely get all set up to start the third round of Topo/Cytox/Zometa on an outpatient basis from the Clinic Monday thru Thursday next week. We got to see our little buddy Ryan today. He looks pretty good - but a little worn out with a cold. We're keeping the little dude in our prayers. Hopefully Elle will be able to visit with Ryan's big sister Hayley at the clinic one day next week!

Today I was trying to ask Dr. Russell about a thousand questions in the hallway. She reminded me that we don't know the status of his bone marrow at this point. I guess I'll try not to get too far ahead of myself.

Hans is doing very well! We spent a lot of this weekend celebrating and doing things that we can do and that Hans was up for! We had a swimming playdate, we went to the Kemah Boardwalk for dinner and rides, and we had a very sweet little fishing party with our neighbors. The kids all caught fish! Elle has been busy so far. Last week I needed playdates for her while we were doing scans, and our friend Laurie suggested that she join Genna for the 'Vacation Bible School' she was taking. That worked out and Laurie and Michelle helped with her in the afternoons and Michelle and Carmen helped with Honey. This week Elle is doing a Girl Scout 'Twilight Camp' every evening, and today she had a day-long playdate with her friend Kae, in the event that we needed blood or platelets and wouldn't make it back in time for camp.
Thanks to everyone for the help! Honey is doing pretty well. She has joined me on a couple 3 mile walks now.

All we can say is thanks for the well wishes and prayers. We're still on cloud nine with the news we've received. Right now we're praying that this treatment will continue to keep the NB at bay, and that our other dear friends Ryan, Erin, Colby, and so many others battling relapsed NB, will get news they are hoping and praying for.

I do have pictures to post, but I'm having technical difficulties - so I'll give an IOU on the photos...

Thanks for checking up on us. We're doing great right now!
Love, Lara

Things are looking up!

Hi all-

Hans had his x-ray of his right arm on Wednesday and his MIBG (full-body scan) yesterday. So far..so good!! Dr. Russell said she couldn't see anything on the MIBG! That means that compared to a month ago (when Hans's arm 'lit-up' with tumor on the scan), the treatment he's been getting seems to be doing the trick. The x-ray still shows that the arm is still fractured, but it seems to be healing. We knew the arm was getting better because he has started using it again. Six weeks ago he would not move his shoulder 1 inch away from his body. Getting him dressed was very difficult because of the pain. He would pull his right hand with his left hand to get the arm through the sleeve. Now he can raise his arm above his head and basically put his arm through the sleeve like normal. There is still a little range-of-motion issue, but it's much better.

Hans seems to be feeling great! The first couple of days after he finishes his chemo he gets a little run down, but he rolls with the punches pretty well. I wish all of you could just spend a couple of days alone with him as he does his treatments. He's so cool and says the most optimistic things. Yesterday when we told him that his arm was getting better from the magic water (chemo) and pictures (radiation), he said "Yep..the doctors got the boo-boo out of my arm and I pooped it out!!". Fine, you're right... the magic water worked and you pooped the boo-boo out of your arm. Whatever works for him, works for us.

We are just super relieved that the treatment we and Dr. Russell have chosen for Hans seems to be working. When he first relapsed, there were dozens of options to choose from and we had to weigh how aggressive we wanted to be while weighing the potential side-effects and survival outcomes. It was the most stressful time we have experienced during his disease because with regard to relapse the 'right answer' isn't well known. Now we know that we can continue this treatment protocal for 3 more rounds and go from there. We don't have to think about other options, at different hospitals, around the country.

All is good for now. Keep the prayers, crossed-fingers, rain dances, etc. coming our way.

Love Kevin, Lara, Ellie, Hans

Hans Holding on Counts

Hi, Okay a quick-ish post/update:
Hans was much the same on Sun and Mon as Sat. Slow in AM and then perked up. We thought for sure he'd need red blood cells, but no...he was like 11.something. He is very borderline on "Plate Loops", so we will recheck on Thursday.
Hans was feeling well enough to SWIM yesterday!!! Kev and I felt confident enough to allow him - so we had a pretty joyous afternoon at the pool yesterday.
Also - we had an interesting appointment for a photoshoot this evening. We had to stick around the Med Center til 6:20 pm. Hans and Elle and I spent a superfun day at the Houston Museum of Natural Science (I read this is the 4th most-visited museum in the US - can you imagine?) admiring butterflies, watching Dinosaurs in 3D IMAX and checking out Geopalloza. Hans is some how hard-wired to 'rock out' when we walked into the exhibit of very cool geodes, they were blasting Led Zeppelin and the boy knew he had to drop everything and DANCE in the Disco Ball. It was sooo very sweet, I'd have taken a video, but it was very dark.
Then - the amazing news - Hans actually fully participated in a family photo shoot, and so did Kevin, Elle and I!!! This is the first professional photo shoot of all four of us that we've gotten through. I swear I've made appointments - but someone was sick or moody and it never happened. The extra-cool thing is that it was a promotional photo shoot for Gulf Coast Regional Blood Center's Commit for Life 2009 Campaign (we may or may not be featured). A couple of months ago I recieved a generic "share your story" email from Gulf Coast where they wanted to know why I donated. It was easy to adapt the story I had prepared for Lunch for Life. And, those of you who know me, know that I take many available opportunities to fill out comment cards or share my opinion! It's pretty special that they asked us to partake. There was a professional photographer and a stylist there! So we ALL got touched up. I should be getting a copy of the pictures on disk within a month and I'll post. It was pretty neat - they also had some nice food/snacks and a thank you gift of a pretty candle. I'm just thrilled that it worked out. Hans amazed the photographer and stylist and really hammed it up.
The kids also did art today at the clinic, and Hans entered his watercolor of Honey, Black, Orange and Cotton into the Making A Mark 2008 Art Exhibit. Very sweet! One of the art volunteers there was very impressed with Hans' representationalism for his age. The photographer and the stylist were impressed with him too, and they both told us how smart and funny he is. So- all in all a pretty proud day for us!
Thanks to Donna Arnett for a knock out meal from bucca di beppo, and to carmen and ginger for their in-home puppy catering services:)

Lara

Father's Day Post

Hi again,
For another update - Hans is doing okay. It's a little freaky he's starting to slow down and look a little worn out. His counts came out great on Thursday, but by Saturday morning he wasn't quite the same. I guess this could be electrolytes, calcium dips?(Due to the Zometa dose), or probably just the to-be-expected drop in counts after the chemo. We don't have another visit til Tuesday, but we might call and try to get him in to check counts on Monday????
My mom left last night to go back to school and finish out her year. It was nice to have her! We sure get homesick for all our family with all these medical events.
The other day, Kevin and I were talking and he said that he thought we'd been in the hospital half of the last month. I pulled out my date book, and we'd actually been inpatient 20 of the past thirty days. What a whirlwind. We're still sort of reeling from being just about to begin a semi-normal life off treatment, just 1 week to go on Accutane/Cancer treatment, and then being whirled back into it all. All I can say is UGH.
The good news, though, I think, hope and pray, is that Hans is doing a lot better with his arm. He is moving it more, it is looking more normal and he is complaining of less (some) pain. We found out we have scans next week - an xray Wednesday and an MIBG on Thursday. I was happy to get the exact dates that we wanted! Less waiting! Kevin and I both somehow have a good feeling about these scans.
On a fun note - Hans got his first early birthday present - thanks to Grandma Kathy, Grandpa Dale, Aunt Holly, Uncle Michael, Aunt Debi and Uncle Mark went in on a Nintendo Wii! What fun!!! Thanks guys!!! I think Elle is the one to beat. She has beaten us all at golf and she knocked me out in boxing last night. I told her I was going to start calling her Sporty Spice.
One more thank you- to our friends Carmen and Jim - carm's been coming over here to take care of our dog and she brought us an incredible meal. The meals are such a nice treat! Alana, Charon, Beth and Mathilda have all brought us meals in the past couple weeks - Michelle's also been a great help with our Honey dog too!
I attended Chloe's services on Thursday night. I was amazed that Anthony, Chloe's daddy, did such a beautiful job of speaking throughout the event. Tracy (Colby's mom) joined me and there were other TCH staff and families. I can't get that little girl's sweet smile off my mind this week. All I can say is that she was really sweet, really special and very loved.
Happy Father's Day to our Dads, Grandpas, and all the daddies out there... I can plainly see every day that throughout all of his treatments, Hans knows that he is fiercely loved by his daddy!

Love, Lara

Chloe Belle la mas Bella

.
Hi all-

Our beautiful friend Chloe Belle Castillo passed away yesterday morning, two days before her 9th birthday. Chloe was diagnosed with Ewing's Sarcoma on her 7th birthday two years ago.

Our thoughts and prayers go out to her parents Joyce and Anthony, her sister Chelsea and brother Cory. The Castillo family is the best of the best, and we love them dearly.

Chloe was diagnosed about 4 months ahead of Hans and we met her family on the 9th Floor at Texas Children's almost immediately after he was diagnosed. All of the patients rooms are situated on the outside/window-side of the building. Everyone's rooms open to a hallway that runs in a circle around the floor. Since everyone is hooked-up to fluids and chemo, and we can't always leave the floor, this is kind of our social roller-rink. This is where we met Chloe. Hans is often sassy when people walk by our room and want to visit. When Chloe used to walk by Hans's room she would say to her parents, "Don't stop...He's going to kick us out!" I love Chloe for that observation....I think all the cancer kids can read each other's minds.

All of us families lean on each for support. Sometimes its physically and emotionally at the hospital, other times its passively through phone calls, blogs and emails. We are super grateful to have become friends with the Castillo's and especially little Chloe. We will miss her so much.

P.S.
(This is a photo of Chloe Castillo with her great friend/future Hall of Famer Craig Biggio. Craig still lives in Houston and is the national spokesperson for the 'Sunshine Kids' charity/foundation benefitting children with cancer and has made it his life's work outside of baseball. We all love Biggio!)

Kevin, Lara, Ellie, Hans

Home Tuesday

Just a super quick post to say that we are HOME. Hans is happy to be home and we are about to walk our cute dog - or go throw her in the pond. We're back into the clinic on Thursday for counts. So far they haven't dropped low enough for transfusions...
Lara

some pics

Hans as the red ranger! Thanks to my friend Delayna (HS Bud) - that was a really fun gift for you to send! It perked Hans up!


Daddy gives Hansie his haircut

Hans Gives Elle a smooch

Elle and Kae at their Rice University Soccer Camp today! (Hot camp - all day 9 am - 3:30 pm, good thing they're tough!)

Round 2 of Topo/Cytox so far...

Hi Everyone,
Just wanted to let you know that things are going okay inpatient this go-round.
Hans isn't having fever or any ill-effects from the chemo he has been getting. He got his Zometa transfusion to help rebuild his bone where the tumor had eaten away, and to help heal the fracture, and, I think, for pain. That was interesting because the whole time he was getting that transfusion late on Thursday night he was just pouring sweat like a fountain, but has complained of no pain.
Dr. Russell stopped by to check on us on yesterday and said that if we continue to have such a "boring" hospital stay that, should we do a Round 3 of this chemo, we could do it on an outpatient basis.
The plan is to get through this chemo and do a CT and an MIBG scan to see what is happening with the tumor before we decide how to proceed...
My mom is here and is helping me with a little list of special projects I have put together. I hope I'm not bossing her around too much but I love getting these things done. She's great! Elle and Hans are happy to have their Grandma Stephanie here. Yesterday she was able to fill Hans' very special request of Conversation Hearts and another Tom and Jerry movie. Hans' taste buds are changing again, he's living off of Cup O Noodles, conversation hearts, french fries and lemonade. He seems pretty content to play video games, watch Tom and Jerry Cartoons and hang out with us. He is also playing with his new favorite toys - power rangers - thanks to Grandma Kathy and Uncle Tommy for sending us some new ones! He's pretty lovey-dovey with us and tells us all the time how much he loves us. He is now almost completely bald. Yesterday he was hand-picking off remaining hairs so that they wouldn't fall off on his clothes and be itchy and scratchy... Kevin has been able to stay here with us some nights, and, in effect, shorten his drive into work. Somehow it's not the same, I'm sure, staying at the hospital and then going into work...He was up all Thursday night taking well calls, but now that this one is sorted out I don't think he has another one coming in for a while.
On Wednesday afternoon, Hans and his buds were able to meet up at the park for a quick, hot playdate. That was nice, it has been a while! Hans is making new friends with a pretty little red haired girl, Kira. It was so cute, when she showed up at the park with her mom, Vicki, Hans really perked up and said, "Mom, look who's here!"
Last night my mom and Elle and I went to a special event called Dream Night at the zoo, we got invited through TCH. It was pretty neat with free carousel rides, photos, airbrush tattoos and more! Elle got TWO tat's of a soccer ball with flames, she's getting amped up for camp! We saw another NB kid, John and his sweet family there.
We're happy to be up on the 9th floor to be near and available to Chloe, Joyce and family as they go through this most difficult time. We're also keeping little Ryan aka Batman in our prayers as he learns of ongoing progression of this awful disease. Colby got stable scans, and we're hoping Erin's new Treatment is doing the trick to keep progression at bay. My friend Kelly just shared the amazing news with me that her relapsed breast cancer is "almost all gone!" Wonderful...
I'll let you know when we make it home, either Monday or Tuesday.
Lots of Love,
Lara

Go ahead given for next round of chemo/Admitted onto 9th floor

Hi everyone,

I just got off the phone with Lara and they've been admitted and were being taken up to their home-away-from-home for the next 5 days, Room #912. If you'd like to communicate to Hans and his family during this stay, it's easy as 1, 2, 3. Go to the following link and send a message which will be hand-delivered to Hans.

http://www.texaschildrens.org/parents/patientgreeting/default.aspx

Good luck to you sweet, brave big boy Hans!

Carmen

Bald spot...

Hi there, so once again it's been almost a week since we posted. I guess in this case no news is essentially good news. Hans is feeling pretty good. That's how it goes, these kids get to feeling really well and then it's time to hit them with more chemo. We had an office visit this morning and met with Dr. Russell:
-His Hemoglobin is up to 13.9, his platelets are at 81, and with an ANC of over 1000 he can safely be out in public again. His counts have recovered so that he won't need anymore transfusions.
-Dr. Russell said his platelets just need to be at 100 for him to get chemo. He has another visit on Thursday and he is expected to be admitted for his next round of chemo (Topotecan/Cytoxan), and he'll also get Zometa during this hospital stay - via IV infusion.
-We are all finished with Radiation! It's nice not to have to be down there daily. We actually finished up with that on Thursday last week.
-Hans' hair is really falling out now. He's got a shiny bald spot on the back of his head, but his hair up top is still pretty full. I was trying to get him a photo shoot scheduled for yesterday - but the girl couldn't do it until possibly tomorrow morning, but I'm afraid by then it'll be pretty clumpy... I think we might just wait until he has that smooth cue ball look again for portraits... It was pretty cute this morning, he was getting out of the car, and he had shed a good deal in the car seat, and he picked up about a handful of it and patted it back onto the top of his head. I think he's ready for his daddy to give him a haircut tonight.
-My mom comes in tomorrow for 10 days to get us all through this next round of topo/cytox. We're all looking forward to that!
-Honey is doing great as our dog. She's adorable and pretty amenable to training. I can't believe it! We have a track record of finding wild dogs that are resistant to training - I actually thought it was me. So, I'm very pleased with how things are going.
-Elle has only three more days as a 3rd grader! She's been having fun with Volley ball and will start off the summer with a soccer camp thru the Rice University Women's Team! I'm excited for this experience... She'll be right across the street from us too, as we'll be inpatient a couple of days of her camp.
Guess that's all for now.
Lara