Another Day...

This is super-cool Serenity Colon and her adoptive mom, Leigh Ann.



Serenity passed away this evening in the pediatric ICU at Texas Children's Hospital.



We lived two doors down from Reni-Roo for a month during Hans' bone-marrow transplant. This one is hitting our little Ellie pretty hard. Ellie really took to Serenity. Everyone took to Serenity. Serenity had leukemia and received a bone-marrow transplant from her natural mother (not Leigh Ann) last year. Unfortunately it didn't work. For one reason or another Serenity was left to her own devices. Leigh Ann took over as primary care-giver out of the absolute greatness of her heart and with disregard to her personal life and career. Leigh Ann is our super-hero. We have met too many kids that are left alone to deal with cancer for one reason or another. Leigh Ann took the reigns and showed Serenity love beyond all love.



Again...this is two little souls in one week



Give a shout out and a prayer to Leigh Ann and strive to be like her. We'll all be better for it.



Kevin, Lara, Ellie, and Hans

Saturday

Hi - just a note to yesterday's post. Our outgoing email doesn't actually work. I can get emails, but can't reply until the cable co. comes out. So sorry - I am usually pretty on top of getting back to people.

We just figured out that the lightning hit a tree in the neighbor's yard - just a few feet from where Hans and I were sleeping at the time! It fried the nearby breaker box that goes to our hot tub. If you know our history with that hot tub - you can imagine our mental state about this. But, at least we're all healthy!

Elle did pretty well at her meet today - her starts are improving and she shaved 2 seconds off her backstroke! She did get DQ'd on the breast stroke, but it's a tricky stroke, and she can't really look to us for tips. She has had fun with Michael and Cassie and Kaitlyn this season. Her season is now officially over. We can sleep in on Saturday mornings!

I don't have any new news on Serenity or Jaki (sp??). I hope their situations are beginning to look up and they can get out of the ICU soon!

Lara

Superquick Post We're Home

Okay - we are home. I'm exhausted and have to be at a swim meet at 6:30 am, or I'd fill you in more. Hans woke up at 630am on Weds, but didn't wake up. Elle saved him by pointing out to us that "Hans is sleeping with his eyes open." Called 911, gave emergency injection of SoluCortef (50mg of hydrocortizone) since he doesn't make it on his own now w/o adrenal glands. Did not respond. Remained unresponsive for the entire ambulance ride to TCH in rush hour AM traffic. Around 830 am they rechecked blood sugar in TCH ER. He was at 15. Normal range is 80-120. They injected sugars, a nurse asked how he was and he responded "I OKAY". He had been in a hypoglycemic coma for 2 hours. Unclear why - some kids with Neuroblastoma have issues. New plan is monitor Blood Sugar levels from home 2x/day, and up the dose of each steroid he's receiving. Hans is now the same as he was Tuesday (fine). We go back in on Tuesday, and then again the next week.

Thank you's: Ginger Klein and family for taking Elle all day Thursday and Thursday night. Dana and family, Carmen and family, for helping Ginger entertain her Thursday.
Sweebe Family for taking care of her today - getting her to swim practice, getting her enrolled in museum day camp and taking her swimming! Thanks to everyone else for your thoughts, prayers, calls and concern.

We do not have access to our telephone due to the lightning. So - got to call us on cell phones or use snail mail for now. Well, I think email does work - with pirated wireless. Sorry, neighbors!

Malachi and his family were really neat, upbeat people. Their absence from the 9th floor is haunting. His web page is: http://www.carepages.com/ care page name: buddhabelly You just have to register with an email address, login name and password.

Now we still have two kids fighting for their lives in the ICU. Serenity Colon continues her fight. They are doing a lot for her. www.caringbridge.com/visit/reniroo

We ran into yet another Neuroblastoma mom outside the lobby of the ICU. Jaki is having complications after his 20 hour resection surgery! Our post-surgery experience traumatized us! But Hansie got through it and we made it home. Prayers, thoughts, good vibes, anything you can spare would be great. It's days like these I feel we are really in the trenches, in a tour of duty.

Lara

Last 2 Days Should Be Erased From Record

Hey all- This is a photo of super-cool Malachi Schaefer

Usually Lara writes all the updates for the blog but she is in the hospital with Hans ...so you get Kevin today. OK 1..2..3.

1) Our house got hit by lightning on Tuesday night and fried most everything but our laptops. I'm stealing our neighbors wireless to update the blog.

2) Hans had a severe episode of hyglycemia late tuesday/early wednesday and ended up going for and ambulance ride with Lara to Texas Childrens Hospital. He is fine now and should be home tomorrow (friday) afternoon.

3) Our beautiful little friend Malachi Schaefer passed away from a central-line infection late tuesday/early wednesday at Texas Childrens Hospital in the Pediatric ICU. Hans has been in the ICU for three of these similar infections. Malachi was a very beautiful little boy who was always running the halls of the 9th floor (Cancer Floor) at TCH. Everyone loves him and his family very much. His parents are examples of what we all should strive to be as human beings. Both Kerri and Ben were always there through all treatments and were as supportive to other families (like us) as they were to their own son. Lara and I are hurting so bad for Malachi's family. We have been in this stupid situation for 8 months now with Hans and now we are starting to lose little friends. It hurts and it is not OK for little kids and their families to do this. It's like being in a high school where half your class dies for stupid reasons. Say a prayer or send good vibes to all of the 9th floor cancer center nurses, too. Those young women and men take care of our kids for months/years at a time and not all outcomes are good. They are humans too and they are devastated by things like this. We love them so much.

Hans is well. We'll post more on him tomorrow when he is home.

Love

Kevin, Lara, Ellie, and especially Hans

Tuesday's Office Visit

Hi,
Hans had an Office Visit today. After two weeks, he was pretty apprehensive, as soon as we turned onto Fannin, he got upset saying, "I don't want a pointment, I wanna go home!" But, he calmed down as soon as we checked in and took a seat and were able to snuggle in a big comfy chair. His labs were drawn by venipuncture, since he is now without tubes. It went reasonably well, and he stopped crying as soon as it was over. They got us promptly into a room and we saw Dr. Russell. The non-news is that Hans didn't gain (or lose) an ounce. He is still exactly 10.8 kilos (23.76 pounds), not exactly the ideal weight for an almost four-year-old boy! At least he didn't lose. Hans has been experiencing diarrhea since his second surgery. Dr. Russell is concerned that his diarrhea may be getting in the way of his nutrition. We're going to give it two more weeks, and then she'll decide if he should start on a shot which will help him control the diarrhea. I can assure you that the boy has been eating like a mini-lumberjack (eggs, smoothies, spaghetti, PB&J's, cereal, chicken and more)! Actually, other than that, his counts were all fabulous: ANC 6,000; Hemoglobin 10.9; Platelets 228; and White Count 8.83.

Hans got his scan schedule for July - he'll have a Bone Scan 7/16, a CT Scan on 7/18, and an MIBG on 7/19. This is all actually a little earlier than I had expected (about a week). And it's less the Echocardiogram, GFR and Audiogram that he went through the last time he did his Scan-o-Rama. Maybe they'll add those in later? I didn't think to ask... I pray that all these scans will have "normal" results. If that is the case they will say Hans has No Evidence of Disease (NED), he'll be in remission! If that's the case - Hans will be on a couple of oral meds for several months. He'll take Bactrim for about 5 more months, an antibiotic, to prevent against a specific type of pneumonia for which he is at high-risk. He'll also take Accutane for 6 months (the acne med) - the idea is that this drug will inhibit tumor cell growth. He also goes back in for scans every three months (Oct 2007, January 2008, etc). And we pray that he remains NED.

• There are a couple of other kiddos that could use our prayers tonight. Serenity is battling BK disease and is currently in the ICU. I was able to pay her a brief visit today while my two kids waited patiently in the lobby (no kids allowed in the ICU). She touched my heart when she held her little arms out to me and said "Hold me" when I walked in. The poor little girl is in a lot of pain. But, she was slated for a surgery today to drain her clots and insert a catheter to her bladder directly through her stomach. She is now at day +17 from her third Bone Marrow Transplant and isn't showing signs of blood counts yet.


• Nathan just had a biopsy that came up showing additional malignant cells in his bones. They are still hoping to break out of the BMT unit by Friday. That'd be awesome.


• We ran into Carlie today at the Clinic -she looked adorable in a bright pink smocked dress, and her mom, Charon, is hopeful that the new meds she is on will help her.


• I read Patrick's update that his Central Line has been removed! They are celebrating in Lake Charles and don't have to come back to Houston for 2 weeks!


• We saw Chole today and she looks fabulous and was climbing the walls!
• I believe Roman started Bone Marrow Transplant on Friday last week.
  

Now that Hans is needing less and less medical intervention, I will try to post at least twice weekly with pictures and updates of his improving health and spirits, as well as our normal families activities...

Lara

Hans and Elle, on their way into the pool

Ryan and Hans, Passing Time at Swim Practice

Hans the Fish!

Me and Hans at Alden Bridge Pool yesterday. He lasted about an hour in the pool. I think it's a great way for him to build up strength. And, he looks completely happy floating on the noodle...
(Thanks to Carmen for taking the shot and sending it to me. Thanks, too, for watching Elle when Hans and I had to bail.)

Hans has just continued to do a little bit better everyday. He did really well at the swim meet yesterday. These things last hours and you just set up a little area to hang out in any shade you can find. Thanks, Dana, for letting us all borrow your cool shade tent at the meet on Saturday. Hans hung in there through the whole thing. I was even off doing my volunteer job of writing down times for 2 hours and he was fine hanging out.

Last Thursday was the Neuroblastoma Meeting at TCH. I decided to conserve our energy and stay home. However, Kevin went, since it's not too far from work. He said the meeting was awesome. He got our Doctor's permission to go the National Neuroblastoma Conference in Chicago next weekend. We scrambled to make the arrangements and it's all set. We're looking forward to going to a new city. And, to finding out all we can that may be able to help us make the best decisions for Hans now. We'll also get to see a bit of the city and meet up with Kevin's cousin Erin, who lives there.

We tried out an Astro's game on Friday night! Every time we would pass Minute Maid Park on the way down to TCH Hans would get all excited and talk about getting to eat chips and watch the game, and see fireworks. So, we took him. I think he was pretty tired after not napping all day. But, with lots of concessions, we managed to see most of the first half of the game. It was a good experience. I just think he'd stay a little longer next time.

I'll post more on Tuesday, after his office visit. I'm hoping he'll have gained a bit of weight. We think he's filling out a little bit!

Happy Father's Day to all the dads out there - Especially Kevin, Grandpa Oscar, Grandpa Dean, Grandpa Dale, Papa, Great Grandpa Bud, and "Gramps"(Great Grandpa Web).
Lara

Hans Took the Plunge!

Today we met some friends at the pool and Hans was ready! He suited up and got in! He had so much fun. I forgot my camera, but it was very cute! He had a huge smile and said cute things to me like, "I'm a good swimmer!" He swam with a noodle and was really pretty brave.
I'm very relieved because it's a lot easier to pass the summer in Texas in the pool than in a lawn chair. Hans even had a successful babysitting experience with Carmen yesterday while I got my teeth cleaned!

We don't have a clinic visit until next Tuesday, but I think we'll go into TCH on Thursday for a parent meeting on the topic of raising money for Neuroblastoma research.

There is a Run/Walk for a 4 year old little boy, Carson, who has an aggressive form of Lymphoma, on Saturday the 16th at Barbara Bush Elementary at 7:30 am. I can't make it now, due to Elle's swim meet, but I wish I could be there. I just found out that Carson's mom's first Run ever was the Run for Hans back in November.

Lara

Elle, Kevin and Hans last night at home

Hans, opting to snack, rather than swim, at the pool on Thursday

Elle, Ryan, and Michael at last week's meet (Monte in background)

Elle about to hop on the starting block at her first meet!

Hans with Daddy at Last Week's Swim Meet

Hans Made A Wish!

Hans has been sans tubes for four days now. He seems to be enjoying himself. He still continues to make small improvements in his energy level and his activity level each day. But, some things are still coming more slowly. He is apprehensive about getting into the pool or our hot tub. He is also having very brief playdates - but at least he's showing up. His appetite is pretty good. He is downing yogurt smoothies and he ate some chicken yesterday and today. I think I'm realizing, too, that he needs to take it pretty slowly. It's not like Elle and I to really take it too easy, we're used to being very go, go, go.

The big news here is that we had a visit from Make A Wish last night. With much prodding and catering to, Hans finally shared his wish to go see the Rain Forest and the Volcano with our two volunteers. We suggested Costa Rica and it'll be arranged for November or December of this year. It'll be the trip of a lifetime. If you've been to Costa Rica please share your suggestions for where to go! It's pretty amazing that we'll be able to have such an excellent adventure all together after going through all of this!

That's all for now - Lara

Great News!

Hi,

We had a clinic visit today. First off, Hans did great and was very calm and cool and collected. He was even upbeat about seeing both his surgeon for a follow-up and his regular oncologist. The magic nurse Erica managed to draw enough blood out of his tubes for a sample! Everything was great! His complete blood counts were still great and they don't anticipate having to give him transfusions. His electrolytes were all in the normal range! I am very excited about this given that he has just been eating on his own and hasn't had them checked in over a week! Also, his liver panel looked like it was trending back down toward normal! This all impressed Dr. Russell so much that she decided to pull the line out right there on the spot. Hans got through it and now he's free! This means that he is free to swim in the pools and he won't have to get the dressing changed on a weekly basis, and we don't have to do the daily flushes, and he doesn't have that major risk for infection. It's cool! His reaction was, "maybe we should wait a week." But, I think he'll warm up to the idea soon.

He is holding his own weight at a mere 10.8 kilos, so if you see him, offer him a doughnut or a cheese stick! :)

We'll see some of you at the pool this summer! Whoo hoo!

Lara

PS We had to change our home email address. Please use: kweberling@houston.rr.com instead of the sbcglobal account. Thanks!

Another One! Thanks Madisyn Miller for Donating your pretty hair to Locks of Love

This is Madisyn Miller, grandaughter of Cindy Dyk, (Hans' grandma Kathy's BFF). Thanks for sharing, Madisyn.

I think it's neat that this generation of kids really cares!

Ginger Before Locks of Love

This is our friend Ginger, before Locks of Love. I know this is at least the second time she has grown out her pretty hair to donate. Ginger was a big help in the Run for Hans. She has been managing the account for us, too! Thanks, Ginger!

Ginger After Locks of Love!

Thursday's Check Up

Hi!

We had a late afternoon check up yesterday back at the regular Cancer Center, with Hans' Oncologist, Dr. Heidi Russell. It was very chaotic at first. When we pulled into the parking garage, after having 5 days completely off of TCH, Hans screamed "No, mommy, no, I don't want to wake up here!" Poor baby. Elle and I explained to him that it was just a clinic visit, and after about 45 minutes to an hour he calmed down. About then, it was time for the nurse to draw labs out of his PICC line. After three nurses tried for 40 minutes, they ended up having to get blood through a venipuncture. Both Hans and I were in tears at this point. The poor little guy was being such a good sport, and then had to go through that.

It was nice to see all the nurses and support staff,as well as our familiar friend Dr. Russell! It had been almost 2 months since we were turned over to BMT. Hans was happy to even get a surprise pop-in visit by Dr. Rainusso, a Pediatric Oncology Fellow who Hans refers to as "my real buddy." Dr. Russell proclaims that, "Hans is doing spectacularly!" Her only real concern at this point is his weight. Our objective has to be to fatten him up. He is down to 10.8 Kilos. I try my best to offer him food around the clock and meet as many of his food and drink requests as reasonable, or maybe more than what's reasonable. He just doesn't seem to eat a large volume of food right now.

Since we were so late in the day, and had had problems drawing labs, all of his counts weren't back yet by the time we me with her. But, his Complete Blood Count was back. Everything looked great! His Hemoglobin and White Counts are holding their own, and the Platelets are continuing to climb. This essentially means that the stem cells have engrafted - found the bone marrow and set up shop to make these three types of cells on their own. The Liver Panel and the Electrolytes didn't come back, but we got a call today informing us that there was a clot in the sample so no results could be determined. The good news is that Hans looks so good that Dr. Russell didn't even care! She said we were okay to come back on Tuesday. After that, we may not have to come back for two weeks. She also explained that the tubes can come out as soon as we're sure Hans can eat enough to gain a little weight and won't have to go back on TPN. So it was all-in-all a great visit. It was nice for me to have Elle out of school and with me. She is a great little helper and I didn't have to worry about getting back to her! I feel that Hans is having a little more energy and doing a little more physically and socially each day. I'm sorry if he's been mean to you, yelled at you, or told you to get out. This is a huge adjustment for him and I do think he's doing his best!

Lara