CCC Act Passed!

Hans helping me paint the kitchen 'tempered sage '
The most exciting thing happening is that George Bush signed the Carolyn Pryce Walker Conquer Childhood Cancer Act yesterday! It is little-known that George Bush lost a sister, Robin, to a Pediatric Cancer in 1953. This 'landmark' legislation had unanimous votes in both the House and the Senate. The Act was renamed for the daughter of one of the original sponsors, Rep Deborah Pryce (R - Upper Arlington), who died of Neuroblastoma in 1999 at the age of 9. The main things it will do is earmark 30 million dollars a year for 5 years for Pediatric Cancer Research and Awareness (how many of us had ever heard of Neuroblastoma before our beloved little friends were diagnosed? - not me!) It will also create a population-based pediatric cancer registry (we don't have one of those yet?!?) This will be great - they'll be able to identify trends and possibly causal factors. We're kind of clueless as to where these cancers come from. You do sort of feel patriotic on a day like this - to see Republicans and Democrats coming together to do the right thing in the interest of the littlest Americans in the gravest danger. Thanks to each of you who sent letters and got your friends and family to do the same. We did it! Pats on the back all around!

As for our little family - we are taking it sort of easy. We're having basically a home-based recovery from Round 4. Hans is still doing great - I'm just paranoid, Hans' counts were all GREAT on Monday - his ANC was still 3K, but since we have to get him on a plane on Friday I want him to be as healthy as possible. We're finding things to do around here. I finally picked a paint color for the kitchen, and Hans was happy to help me get the job done yesterday! He volunteered for the tight space behind the fridge for me. His interest in reading, writing and letters has picked up, so we are all getting encouraged about his prospects for Pre K at Glen Loch with Elle. He picked out some MORE fuzzy poster boards yesterday. He is going to deliver one of these pictures for his very special friends, the ladies at our local Exxon On The Run store - Zena, Brenda and Julia who love him and treat him like a rock star every time he sets foot in the store.

Elle has been having fun in Seattle. She and my mom hopped on a ferry and went to Victoria BC for a day of fun and tea at the Empress Hotel yesterday. She was soooo ready to get out of the country! She's told us several times, "I can't believe I've never been out of the country!" I try to remind her that she hasn't hit 10 yet. I guess she can't complain about that one anymore. Elle has left the country. Hans is counting down the days that we'll get on the plane and he'll see his sissy again!

That's all for now - Lara

PS - Thanks to our friend shirley for yummy chicken fajitas last week while we were in chemo. They were awesome! And - good news, we heard that our cute little friend John T. got good news/clear scans! Yay! Pray for Patrick, he was called back in for a questionable spot on his Bone Scan and is doing an MIBG test this week...

Curement, bald heads and such...

So - for an update...Hans is doing quite well so far. I reassured Kevin tonight, that they really did give him chemo last week. The nurse was very thorough and she showed me the label each time she hooked Hans up...

Hans took to calling all of these procedures his 'curement' (not treatment) the other day. He has only used the term once or twice, but I like the positive attitude it conveys. He has the confidence that his doctors are curing him of Neuroblastoma, even if they aren't quite sure about that themselves.

A funny little thing we've noticed lately... lots of people are asking us if we've shaved Hans' head. So far the sushi guys and pizza delivery guys have each asked us if we did that to him! I just say something like, "oh, it's his medicine."
There are a couple of other ways to broach the subject. One tactful neighbor saw Hans without hair the other day and she steadily asked if Hans was back in treatment. Another mom we met at a restaurant approached us to ask if our son was in treatment. I think this question is a good way to open the subject with a stranger. Our answer can be as detailed as we feel up to. That particular mom then shared with me that her son was also in treatment at TCH. Most people say nothing or ask nothing about Hans whatsoever. Some kids at the pool sort of seem to think Hans is a very large baby. It's kind of a trip. Most strangers are patient and kind with our baldie, and just give a wide smile.

Okay - just my two cents for tonight. Elle has had a fabulous time with Kev's mom and Kev's dad in Central Washington. She golfed nine holes yesterday! She worked at the public market this morning with Grandma Kathy and Aunt Holly, and she has now transitioned to my mom's in Edmonds, WA - near Seattle.

We'll post more later. Thanks for checking up on us.

Lara

Day 4, Round 4

Hi there,
We're cruising through this week. So far, Hans hasn't shown any real ill-effects of the chemo. Tomorrow will be the last of round 4 and he'll also get the Zometa, which is used originally for Osteoporosis, and will help heal his bone. The week has been long and days have been long. We've been able to carpool with Kev - so at least we're getting one car off the road, and Hans gets pretty excited to get out of the clinic to pick Kevin up. Hans has learned to read the pump to see how many ml's are left to transfuse, to get an idea of how much longer he'll be hooked up to a pole. We each kind of had one bad day this week - but I do hope those are behind us. My challenge is getting 30 oz. of fluids in him each and every night! This is like drinking 120 - 180 ounces of fluids for most of us - no fun! But, we are trying to come up with lots of ways to get him to drink. It's like a frat house over here - drink, drink, drink!
I guess our next challenge will probably be to figure out just how much to shelter him over the next week to keep him in optimal health for our trip next Friday!
Okay - better go get the boy to take another sip.
From what I understand Elle is having a great time with Grandpa Dean/Grandma Diana, Auntie Anna and little Emma. She is enjoying golf camp and I guess she has been getting the ball off of the ground.

Lara

Here We Go with Round Four of the Topless Cylcone...

Hi -
It's been a few days since I've posted but I just have random updates. We have had a medically uneventful week and weekend and will go into clinic 5 straight days tomorrow for Topo/Cytox and an infusion of Zometa.
-His isolation status has been lifted, so he has gone swimming/jumping off diving boards/Chuck E Cheesin' it, and all the last several days. We're happy he won't be sequestered to a small room all week for chemo.
-Honey now outweighs Hans at 36 lbs, though Hans is right behind her at almost 33lbs. Hans and I took her in for a shot on Friday and Hans was beside himself that it wasn't his appt. He loves it when anybody else in the family has to get a shot. I guess it's his cheap thrills. He also was an excellent helper giving Honey her heart worm and flea meds. He helped me track down all three cats today to apply their advantage. He's a little vet tech!
-The Great News I've heard recently is that The Carolyn Price Walker Conquer Childhood Cancer Act passed unanimously in the Senate. There was a lot of talk and concern that a secret hold had been placed on it and that it would die before getting to a vote, but thankfully, no, now we just need W to sign off, (I think)!
-We got the news that our dear friends Megan and Phil delivered baby Desmond into the world on Weds. He just missed sharing Hans' bday by less than three hours.
-Elle got bumped to first class on her red eye flight to Seattle - she loved that! She has been having fun with Grandma Kathy and Grandpa Dale.
-Hans and Kev and I booked tickets for a quick crazy trip to Seattle between rounds 4 and 5!
-Also, I've been wanting to share some good news about some of the TCH kiddos - Will and Roman from The Woodlands as well, are doing great and have remained NED, Patrick just got great news on scans this week. There is a little girl, Layla, just starting out on Accutane who is NED but is having an arm pain scare. Let's pray it's nothing. John T has scans this week - hoping for prefectly, clear NED!!!
-Finally, I got surprise photos from a friend of a friend, that Aunica was inspired by Elle to donate her hair to locks of love! Way to go, you sweetheart. I just love these stories. Thanks for sharing your pretty hair, and your pics with me. - darn, I tried to post, but i couldn't make it work...
Okay - that's all for tonight. I'll post later in the week with a CHEMO update!
Love, Lara

Hans is 5!

Jack, Morgan, Adrian, Michael, Zoe, Elle, Hans, Zach and Ryan getting ready to make a wish...

Yipee! Hooray! Hans turned 5 years old yesterday!
Kevin, Elle and I were so happy and proud of our little guy as he celebrated his big day yesterday. Hans is very proud to be 5! He's actually been rounding up for months - so now he can just stop lying to everyone about his age.

Hans' counts checked out okay on Monday - no transfusions needed - and a whopping ANC of 11K! We were just happy to be able to celebrate from home, not at the hospital or clinic. The docs started to freak me out a little on Thursday - bracing us for a possible inpatient Bday - but, that didn't happen. With Hans' RSV status we had to have just a small celebration outdoors at a park, but that was okay - both Hans and Elle thought it was a perfect (if hot) day. We grilled turkey dogs, played with super squirters, did a Power Rangers Version of Pin the Tail on the Donkey, and the kids did the Limbo to the tunes of The Beach Boys. We also had a Pinata - I think/hope each kid got two turns to take a swing at it before Elle (the oldest of the group) busted it open American Gladiator style. It was pretty fun. We had a handful of friends to share the day with - so we were all happy - Kevin took a vacation day to hang with (and grill for) the birthday boy.

Thanks to all of our parents, siblings, grandparents, aunts/uncles, cousins and friends who have been sending Hans cards and packages. Thanks also to Breanna for finding a special something for Hans up at clinic, and to Nurse Natalie, who met up with us to give Hans two way cool transformers on Monday after clinic! Super cool! He has been having such fun receiving all of the gifts!

We go in for another check up on Thursday to check counts, chemistries and just to be sure we're on board for getting more chemo on MONDAY...

Lara

Home again

Sorry - for a bit of a delayed post, but we actually got sprung free on Friday Night. We were very pleasantly surprised on Friday when Hans came back with an ANC of 380 (up from 60) and they said he could go! All we had to do was get platelets and red blood cells (5 hours of transfusions) thank you to the donors out there who make these life-saving transfusions possible! So, our week in the hospital, dubbed "art camp" by Dr. Russell, finally ended! The kids were doing as many at projects as we provided them. Hans was actually doing pretty well but just had that cough and had to be on isolation for the RSV. Kevin was again able to stay at the hospital every other night and go into work from there. That just meant that Elle and I would have to be back down at the hospital by about 7 - to give him time to get to his meetings, we felt like the nurses - leaving at 7, back by 7, we really appreciated just how rough that shift is - esp. if you have a commute!

Hans has been doing great since he has been home. He has been a hungry little lion cub. We are once again going to great lengths to keep him satisfied. Yesterday he had it in mind that he was going to have a steak. He started bugging Kevin to take him to HEB and get him a steak by 6:45 am- they actually went up and Kevin had one on the grill by 9 am!?! After that he was pretty much a carnivore, with a kids meal/chicken nuggets from both Jack in the Box and 'Hot Donalds' and then for dinner a full grilled chicken breast. I tried to add in some carbs, and fruits, but I think he was more or less on the Atkins diet yesterday.

It was sweet to me that Elle stuck with us through our week inpatient. Since she didn't have school or camp to get to, she could just stay with me. It was nice - I taught her to play Speed and Solitaire between art projects. She's going to be going on a big adventure - she's heading up to Washington State to get out of Chemo duty for rounds 4 and 5. She'll be gone a full month, staying with Grandma Kathy/Grandpa Dale first, then taking a a golf camp with Grandpa Dean/Grandma Diana, then she's heading over to Seattle b/w the 27th- thru Aug 15th! We're gonna miss her, but typically, Elle and Hans and I would travel back home for a few weeks in late July/early August. We were going to try to actually join her up there for about a week b/w rounds 4 and 5, but now - after this surprise week inpatient - we're not sure if we should get the tickets or not!!! we'll keep you posted.

Yesterday Elle and I attended Ryan Williams service. It was both painful and beautiful. After the service, his casket was loaded onto a Dayton Fire Truck and then taken to the gravesite.

I'll update more in a couple of days - thanks, again, for checking up on us. We go into the clinic on Monday for counts.
Lara
PS - thanks to the girls for helping out with Honey and to Therese and Ginger for tasty meals that we were able to bring back up to the 9th floor.

Ryan Williams, aka Batman, 9.30.02-7.09.08

Ryan and his mom, Theresa, last week on our clinic "party day", but Ryan had just had a reaction to platelets and was being rocked by mama...

Last night the Williams Family lost their precocious, funny, litle Ryan. Ryan was quite a character, and his personality was about two times as big as he was. He was quite a little ladies man. Last week when he was spending a lot of time with Elle at the clinic, he coaxed her into letting him kiss her on the cheek. He then pronounced that she was his number two girl friend. He reserved the no. 1 spot for thier family friend, Montoria, a teenager.

The halls and family room have been filled up here with their friends and family. Several staff and TCH families were able to come and see him yesterday as well. Ryan was a very loved and cherised little boy. Ryan was diagnosed at the same age as Hans, yet one year before Hans. We have always looked up him as a little hero. Of course, our hearts are broken for his family, but I pray that somehow they will be able to find the grace to go on as a new little family, but one that is just as special and loving as when Ryan was with them.

www.caringbridge.org/visit/ryanwilliams

With love, Lara, Kevin, Elle and Hans

ps.. Hans is doing "well/okay" now, but his ANC continues to drop...down to 60 today. So, we aren't going anywhere until it climbs back up for a day or two!

RSV

Our boy, yesterday

The goofballs in the family

Elle, Hans and me - snapped by our nurse, Dameka, yesterday

Hi again,
I have been waiting to re-post until they came up with a plan. It took a couple of days, but we found out that Hans was positive for RSV - a respiratory virus common in the winter time among infants and small children. They were a little puzzled as to why it would turn up in Hans at almost age 5 in July in Houston! The last positive test they've had in all of the TCH system was May - but oh well. The infectious disease team has been working with Hemonc to decide whether to treat him -and for several reasons, they have decided not to. I guess mostly 'cause the treatment is unpleasant (a big tent in his room with meds that are hard to metabolize), when he'd just probably get over it on his own in about the same number of days. But I think they are going to keep us here for a bit until his white counts come up - who knows, maybe even today or tomorrow! I'll keep you posted.

In the mean time, Hans is doing pretty well. He has a rough cough that only seems to bother him occasionally in those rough bouts. Elle and I have been trading off with Kevin, so he's got all of his family around him in shifts. They kids seem to do pretty well down here provided I keep them in arts and crafts (fuzzy poster boards, puzzles, etc.) Since Elle has the same cough, they all have to keep out of the family room. Anyway, his fever is down now for almost 48 hours!!!

On a heartbreaking note - our little buddy Ryan AKA Batman was admitted last night. He is experiencing some serious pain related to his relapsed NB and he and his family could use an extra prayer now. Another little TCH guy, Blaine, has also had some problems with his treatment for the relapsed NB and could use an extra prayer...

Thanks, Lara

Not-So-Fake Fever

Hi -
So, our luck sorta ran out - We took Hans in to the ER this morning for a fever of 102.1. He was trying to get a real fever all night but it never cleared 101 'til about 6AM. We went down to the ER, where he got his port accessed - (it was actually a rather bad scene they used the wrong needle and I think we sort of excused two nurses from our room). Then, the charge nurse from the 9th floor floated down to the ER and accessed his port very smoothly. He has a bit of an ear infection, a bit of a viral infection in his chest (not pneumonia), and he is being tested for Whooping Cough/Pertusis, as well as having blood cultures grown. Yikes! Hans wasn't able to get his 4 year old boosters of immunizations due to the transplant, and right when he was cleared to get them, his NB recurred, so they say he is at risk for getting Whooping Cough which the ER nurse says is actually going around.

He was moved to the 9th floor and tonight he and daddy are having guy time up in room 904, if you want to send him a little note for tomorrow, that'd be sweet!

I think he is doing much better, and I'm just praying that he'll be treated quickly and be "outta there", as he likes to say. Also - I'm very much praying that nothing will grow in those blood cultures, but it seems like they've found enough likely causes of fever!

Thanks again for checking up on us and for your prayers and positive thoughts for our sweet little boy!

Lara

Fireworks and parade...

Hans burned through the sparklers, whereas Michael saved up his two for last.


I think Smoke Bombs were the biggest hit.

Much more fun things to report than Chemo!
Hans wrapped up his compressed Chemo schedule (he got five days worth of chemo over 4days b/c of the Holiday). Like the Williams' pointed out - he took it so well, why can't we just do 4 days every time? Ha! We left the clinic at about 4 pm on Thursday and Hans' Hemoglobin was a bit low at 8.1. It's pretty borderline for a transfusion, so we're just crossing our fingers and hoping to make it to Monday. Hans also is now a bit low on Calcium, so we are supplementing that. I never should go and count things up - but I realized that between his two daily steroids one - once and one thrice daily, the Bactrim he now has to take 2 times per day Fri, Sat, Sun, the Calcium twice daily and Morphine for pain in his arm as needed - we are dosing Hans with meds a minimum of 9 times a day this weekend! He makes us work it too - he likes 5 minute warnings before each medication, and we have to count backwards 4 minutes, 3 minutes, 2 minutes, 1 minute, 30 seconds, and finally 10 seconds! It's a wonder we don't miss more doses! He was actually an incredible sport all week. I'm sure he complained a lot less than I did. I try to be a good sport. I remind myself that we have it relatively easy with our one-hour each way trip to the clinic. Some fellow patients come in from 2.5 hours out...8 hours out - or more!
Hans has been doing pretty well and he has been relatively adventurous. I have been very hesitant to make "plans" - I guess it sort of stinks to have to keep breaking plans, so I figure if we keep everything pretty tenuous it won't be such a let down to have them not happen if Hans just isn't feeling well or if we wind up on another wild goose chase to the ER.
So - we did manage to make it to the little Woodlands 4th of July Parade, we did some smoke bombs, sparklers, "hen laying egg", snappers and ground flowers on the driveway. Hans and Elle were totally into it - they sent me back to the fireworks stand for more supplies! We also went to the big Woodlands show with our friends the Smiley's. This was incredible b/c up to this point, Hans was afraid of fireworks. So - it was kind of a big step and it was nice to surprise our friends with an appearance. Elle also had a sleepover with Kae's family and was able to attend the Houston Symphony Star Spangled Salute with cannons and everything!
Okay - I'll update more during the week - we go back for counts and possible transfusion on Monday. We have tickets to the Free Kick soccer event tonight - so I'm hoping we'll all four make it - but if not - it'll be a neat daddy/daughter date for Elle and Kev.
Catch ya later - hope your holiday weekend has been at least partially spectacular. It's great when the fourth falls on a Friday, huh?
Lara
PS thanks this week to nieghbors Scott and Lisa and Tiffany and Bryon (our old neighbors) for meals - we are appreciative and are still polishing off leftovers!

Topless Cyclone, Round 3

Hans, riding a very cool rocking horse in clinic yesterday

Elle and Hayley, doing art in clinic yesterday
Hello again,
I have been hesitant to post, just because I liked the rainbow picture. But, Ah, well, I feel I should clue you in.
Hans managed to keep the fever away and make it through the whole weekend at home okay! He has had a cough that he'll only get in rough bouts. He was able to sit through Elle's GS skit presentation (cute), and even watch his first/her last volleyball game. It was sweet. Elle commented that for her first v-ball game, Hans and I were off at the TCH ER getting the fateful Xray. He either has been inpatient, or hasn't been up for a game yet. But it was sweet to see him cheering his sissy on.
We tried to make it to our friend Kelly's special baptism/confirmation party Saturday night. The cough appeared just in time for the party - so we just made a very brief appearance. But it was special since the Father performed a special blessing for Hans. All the people in the room stood up. Many of the women there have been praying for Hans, and reading this blog - so it was neat to meet some of them, if very quickly. I am sure Kelly received a similar blessing, but we weren't able to stay for it...
So - we are on day three of Topo/Cytox. I think it's going okay. This morning Hans was teasing us with a lowgrade fever of 99.7. So, my hope remains that Hans will just be able to pull through this round on an outpatient basis. It's a little exhausting coming back and forth daily, but it is doable. Hans got his port accessed on Monday - so he has only had to have one "poke" all week. He will have it de-accessed on Thursday. He's counting down the days. He comes in, gets prehydration for one hour, the two chemos also run over one hour, and then the post hydration runs over 2 hours. We are then supposed to take him home and get him to drink 30 oz of fluids to flush out the chemo! Wish us luck! We did better with that Monday than Tuesday. But, we've been making the most out of the week. We kind of had a bash up here yesterday - Ryan's dad, CD, arranged a "party" with us and Chloe P.'s family - we all feasted on Pappasitos! Elle had fun doing art projects with Chloe and Hayley, Ryan's sis, and today we had a visit from Snickers the Pony. Hans loved the fact that he was in a diaper!
Thanks - for meals from Denise C., Laura W. Yum! It really has been incredible - It's pretty exhausting to come down here so frequently. It keeps us from relying too much on take out! And - thanks to Carmen and Kae's family for keeping Elle from making the trip every time we do - and thanks, also, to Alana and Carmen and Michelle for helping look out for Honey while we're down here long days...
Okay I think that's it for now. Just hoping to keep up the plan as expected. No Zometa this time, we'll wait for Round 4 to do another Zometa infusion...

Lara