- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.
Thursday, May 31, 2007
Other NB kiddo updates: Our friend Patrick gets to return home to Lake Charles, LA now, and just come back to Houston for weekly check ups! I am praying that they will still see improvement in his hearing. Carlie and Will continue to do well, and Roman is doing his Radiation Treatment. Another little girl, Chloe, was expected to undergo a 12-16 hour surgery several weeks ago, but it was complete in just three hours! If you're available - save the date of July 14th for a big fundraiser for her family. Their insurance will cover only 300K of the estimated 700K cost of transplant. It's in Webester, TX!
Wednesday, May 30, 2007
We got the nicest surprise in the world on Friday. We got a letter from Kevin's old buddy from growing up in Ellensburg, Scott McDermott. He and his wife Bethany and her study group at WWU had done a fundraiser for Hans! They sold concessions at a little league tournament in Lake Stevens, WA for him. I think Kevin scanned in the photos, maybe I can post them tonight. It was heartwarming and surprising! Thanks guys.
It's 85 and getting humid in Houston. This is the last day of school for Elle! And, yes, mom, she did pass second grade! Ha Ha.
Saturday, May 26, 2007
Hans' visit to the clinic yesterday went pretty well. His platelets are actually starting to come up and his Hemoglobin and white count/ANC are holding their own. This all means that his stem cells have "engrafted" - the ultimate goal of transplant. Awesome news! So now Hans will go back to the regular Cancer Center Clinic to his Oncologist for future visits. We've "graduated" from the Bone Marrow Transplant Unit. His electrolytes were sort of okay as well, his sodium was outside the normal range by only one point and his potassium was perfect. The only numbers that aren't totally cooperating are his liver panel, they're a bit high. I've been instructed not to worry about this. So I'm not! The high numbers might be reflecting all the meds and TPN Hans has been on. Now Hans is totally off TPN, and the Fentanyl patch will not be replaced. He is down to his maintenance dose of his steroids and is not on any additional medications! We have an office visit with Dr. Russell on Thursday (no clinic 'til Thursday), and hopefully the liver panel will look more normal. That's my current prayer. Thanks again to so many of you how have kept Hans in your thoughts and prayers. All I can say is, it's working!
Socially, Hans is making slow strides. I tried to take him to the lunch date on Thursday, but he wasn't up for it. He was, however, up for part of the outdoor birthday party. I know some of his old buds were happy to see him out and about again. He stayed at the party for over an hour, and then he was ready to return home. I was pleasantly surprised, I wasn't sure if he'd even get out of the car. We'll just try to give him lots of opportunities and be supportive of whatever he's comfortable trying to do. This is a major adjustment for him, and I'm not sure he knows what to do. He told me this morning that he wanted to go to the clinic.
Have a Happy Safe and Fun Memorial Day Weekend!
Wednesday, May 23, 2007
Hans went into the clinic again for counts. Everything was okay. His platelets aren't kicking in and really taking off yet, but I think that's pretty common, at least he hasn't needed any transfusions. His elctrolytes were actually normal for the first time in many many visits. That was awesome. He has another visit at the clinic on Friday; hopefully we'll be able to stop TPN completely and that may be the end of the Fentanyl patch as well.
His moods have been a little wild. He seems to need to throw temper tantrums that last 45 minutes. He only had two today so that's good. Any good advice out there on dealing with temper tantrums? I always look forward to age 4 as an easier age to work with. I'm hoping that plays out this summer. Hans' fourth birthday is on July 15th. His latest plan is to have his birthday party at daddy's work. It's original!
He got to hang out with Carmen at the swim practice. It was really sweet for me to see him warm up to her again. He kind of has a normal schedule this week. We're going to a restaurant with friends tomorrow for lunch, and then to a birthday party. I'm not sure how he'll do at that one, since it's a splash party and he can't swim or get wet yet, but I'm willing to give it a shot.
That's all for now! I'll try to post some pictures of my cute little baldy soon. He lost all that hair and he's as bald as a cue ball now!
Monday, May 21, 2007
He actually got out of the house this weekend a little bit. We went out for part of the Sharks Swim Meet. Hans got to see his buddies Ryan and Michael. He's just a little hesitant and seems to be more in the medical realm. He was asking if he could go hang out with his "real buddy" Dr. Rainusso... He seems to be drawing a line in the sand in his mind. His is looking for his life to return to "normal" after his tubes come out. That's when I guess he feels he'll be free and ready to play with his friends, go swimming, etc. etc. Dr. Russell says that should be the end of June. Just a month away! Sweet! We also went out and picked a few blackberries last night. Hans really loved it.
He'll go back into the clinic on Wednesday and Friday of this week. They are mostly just closely monitoring his electrolytes and hoping his platelets sort of hold their own like they have been.
Friday, May 18, 2007
That's about it for the update. Other than the exciting news that Elle did make it onto the Sharks swim team. (She was wait-listed for a while and she just got to start the team this week.) I got to go to her practice yesterday. It's pretty fun to see her out there working so hard! We ALL should be on a swim team - it's a pretty serious workout. I'm glad she made the team, because it has daily practices for the first part of the summer and gives her something of her own to go do. She is happy to join her friends Michael and Cassie on the Sharks!
Also - Happy Big 60th Birthday to Grandpa Oscar!
That's it for today - Lara
Thursday, May 17, 2007
Hans is just suddenly doing really really well! He is doing dishes right now (that's one of his favorite at-home pastimes). He has started to eat and has made requests for: chicken wings, "pineapple" cheese (that's what Hans calls Cheddar for some reason...), oatmeal, pancakes, along with lots of whole milk, water and orange juice. His taste buds are still getting readjusted from that last round of chemo and his body is still healing from mucositis, so his eyes are bigger than his stomach, but it's okay.
It was indeed a happy homecoming last night.
Wednesday, May 16, 2007
They kept us Monday night, and then, surprisingly, they kept us overnight Tuesday as well. They just wanted to montior his electrolytes and other blood counts closely when they could easily adjust what he needed in his fluids. He is doing a thousand times better. He is starting to have some lively phone calls and making interesting food requests. He is actually eating very little, but I seem to be running around quite a bit to fill his requests (chicken nuggets, pepperoni pizza, cheesy chips, fruit snacks, and popsicles). He has managed to eat a few potato chips today. He is drinking more and more milk and juices, so I take these as good signs.
Hans just recieved red blood cells and we are just waiting for his final lab results before we get our discharge papers. I never wanted to be coming back so soon, but I was happy to be here where they could give Hans the care he needed. At home, he should only have to take his steroids orally. I'm actually quite proud of how well he does with those. It's a blessing since he'll have no alternative but taking them for the rest of his life.
Hopefully I'll write the next post with good news from home!
Sunday, May 13, 2007
He's been very restful, just quiet and still, and taking little sips of liquid. They say it's probably mostly coming down off the Morphine that's making him sick now, so he should be over that within the next several days. We have another clinic appointment on Monday. The clinic visit on Friday went pretty well. His counts were good enough not to need blood or platelets. Dr. Carla actually told me we could "graduate" back to the regular Hem/Onc (Hematology /Oncology) Clinic, but I gave her a freaked out look and she said I could have one more visit on the Bone Marrow Transplant Clinic. I said, "Okay." They seem to be pretty good about knowing what to expect, so I need to be weaned off of them, I guess.
Happy mother's day to all the mamas out there. Especially our moms and grandmas - Grandma Stephanie, Grandma Kathy, Grandma Diana, and Great Grandma Jean, Great Grandma Lorraine, and Great Grandma Shirley. I'm also thinking of my Gram Gram and Grammy today, Patricia Daniels and Tynne Cady.
PS scroll down to see some more photos from the first communion.
Friday, May 11, 2007
We came home and then found Wendy from Little Saints putting up a great Welcome Home sign for Hans. Thanks, it's really neat, and sorry we beat you home:)
Hans is actually doing better at home already. He is up and moving around a bit more, and drinking more. He doesn't seem to have an appetite for foods yet, but the TPN covers his nutritional needs for now. He was happy to see his kitties, but most of all, Elle is happy to have her family back under one roof.
Believe it or not, it's already back to the CLINIC for us, right now, for counts, a check up and possibly Platelets! Alright!
Wednesday, May 09, 2007
Tuesday, May 08, 2007
Today his counts were still up. His ANC actually grew to 12,000, and his HGB and Platelets are still good. They took him off GCSF, and in order to get him closer toward going home:
- they reduced his morphine by half and removed the self control feature,
- they added oral methodone to help him wean off of the morphine,
- they are reducing his TPN from 24-hour to 18-hour,
- they are reducing his Lasix (to drain off excess fluids),
- and they are also going to think about thinning out his antibiotics,
- he is taking sips of drinks and asking for food, if not eating.
I feel pretty good about all this. I think some other little kiddo will be needing our room by Friday, and hopefully we can oblige!
My mom and Pati made it back to Seattle okay last night, and back to work today, poor girls!
Last night the floor had the sad event of losing little Marilyn, a 10-year-old BMT patient from Oklahoma. My heart breaks for her family. I didn't even get a chance to meet her, but I wish I had. My prayers are with them all tonight.
Monday, May 07, 2007
Elle and Michael and Taylor did great at first communion yesterday. Carmen's parents hosted us all for a party afterwards. It was a lot of fun, thanks Monte and Charlie! The kids were so proud of themselves and were just adorable. I'll post pictures one of these days... His Grace Foundation found us a nice volunteer to sit with Hans during the service, but Kevin stayed just long enough to see Elle receive her communion, and then he was out the door to get back to Hans. He didn't want him feeling neglected. It worked out well.
My mom and Pati are flying back to Seattle as I type this. I think I worked them pretty hard while they were here. Thanks for everything! We had a great time with your visit.
On a happy note, Patrick went home today! Yeah!
Saturday, May 05, 2007
Have a good weekend.
Friday, May 04, 2007
Hans is still doing okay, but they've warned us his recovery will be bumpy. He was put back on oxygen today and was taken downstairs for 2 chest x-rays. The results were 'no change'. This is good - it means they're not detecting pneumonia. He still hasn't had fever again today, but he does seem a bit uncomfortable. He is retaining fluids (he has gained about a pound in fluids, not good). So, they are giving him a diuretic to help drain it off. He is asking for specific food and drinks, like blue Kool Aid. He's not drinking or eating much, but at least he seems to have the right idea.
The girls are on their way back from San Antonio. They took a river tour, a carriage ride, and were sprayed with saltwater by Shamu!
Thanks again for all your words of encouragement and support.
PS Email before/after photos of you, your children or grandchildren if anyone else has done Locks of Love too, I'd love to post them!
Thursday, May 03, 2007
I am doing better, I was able to do some normal stuff like balance my checkbook and pay bills today. When Kevin comes back down I'm going to break out of here for a while and go on a walk and run a few errands. I'm looking forward to that. Kevin fell asleep by 7pm last night, he was so wiped out from the previous night.
Elle and Grandma Stephanie and Auntie Pati are having a good time in San Antonio. Elle said it got pretty wild last night after the Spurs won the game.
As we are experiencing our first bits of good news, our friends have just learned that they have a new challenge ahead of them. Kelly Virina, 32, my friend who helped set up this site, just learned that her cancer is 'acting up again'. She conquered breast cancer and has been done with treatment for several months. I'll be keeping her and her boys Taylor, 7, and Blaze, 4, and husband Kyle in my prayers. She'll start a new chemo regimen in the next week or two.
Wednesday, May 02, 2007
Kevin went home for the night. He had a pretty rough shift. Hans is sort of testy with me - so it's been all about daddy. Kevin only got an hour or so of sleep last night. Hope he gets some rest this evening.
Elle looks pretty beautiful with a nice bob! She did great yesterday at Brian of London. It's nice that they comp the Locks of Love cuts. She'll send her hair off with a note and picture. The girls are now on their way to an excellent adventure in San Antonio.
I've been passing time with the first season of LOST. It's amazing how many episodes you can watch in a quiet hospital room and a sleeping boy and no commercials. It's kind of fun to get wrapped up in a drama. I could never keep up with the series on TV - I'd miss episodes and I was always lost, ha ha...
Tuesday, May 01, 2007
I'm a little bit of a freak these days about germs. We've pretty much decided to close the room off to all other visitors. We're even sending my mom, Elle and Aunt Pati to San Antonio for three days. They'll have great fun, and Hans can just get through these days with only our germs to be exposed to! I've never washed my hands this much in my life.
I'm going back home today for Elle's hair appointment. She's donating 10" of her hair to Locks of Love today! I'll post a picture just as soon as I can. I'm pretty proud of her. This experience has been tough on her, but as her teacher, Mrs. Castro, says, "She handles her life beautifully." It's also been endearing how she has opened her heart to other patients and siblings, as well as nurses on the floor. All the time people ask, "Is Elle coming today?" Sorry - just had to take a boastful moment here to recognize Hans' 'big beautiful sissy.'