We went to the clinic and Hans' HGB is coming down a bit - something like 15.3, down from his slightly scary 16.3 last week. They were able to rule out a kidney problem by the Epogen test, which is very good. Still, they can't quite figure out our Hans. So, we might tweak his Hydrocortisone just a bit and see what happens. We'll wait until we talk to Endocrine. For now, Dr. Russell seems to be Happy that Hans looks great, even though he's still pretty congested. He has had lots of energy and has really been doing pretty darn welll! The clinic was quiet today and we were in and out of there quickly - and for a little christmas present, the parking machine was broken - Free parking!
Christmas was pretty fun around here. We are starting to come out from under all the packaging! Thanks everyone for the gifts for the kids. Wow - it was a pretty techno Christmas. I'm really glad I got Kevin a battery charger. It's pretty cool - it charges all sizes. Now we can keep tekno dog, wowwee roboreptile, two helicopters and two crazy RC cars all revved up. I wonder if I'll ever figure out where to put all this stuff! It's pretty fun though, and really cool. We decorated gingerbread houses last night and tonight we had some really tasty turkey tetrazinni made by my mom and Elle while we were down at TCH! Yum! I'll post more pictures next week.
We will just do counts locally next Thursday and have another office visit in two weeks. They're wanting to keep fairly close tabs on Hans with the Hemoglobin condition.
Okay - bye for now!
Lara
About Me
- 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, December 27, 2007
Monday, December 24, 2007
Merry Christmas!
Hi all,
I hope all of your Christmas eves are just as bustling and as exciting as ours! The kids are SO excited that Santa is coming tomorrow. Thanks to our families who have spoiled us with packages. Our tree is busting out with gifts.
We just got back from a quick fun trip to Dallas. We went up to the American Girl store and Elle got an outfit for her doll, Marisol, and some underthings too! We also saw the grassy knoll and the window of the 6th floor book depository. It was sooo cold up there that we didn't take the tour of Southfork Ranch as planned. We'll save that for a warmer visit.
I asked my mom to snap this photo of Papa, my grandpa. He has been busy baking and baking cookies for everyone. It's just one of the many many things we are still homesick about at this time of year. Merry Christmas to all! We miss our family and friends up in WA more than ever this time of year!!!
I went a little photo crazy - see below...
Love, Lara and all...
PS the ornaments just keep popping up. I looked again this morning and we're up to 2394 this monring! Wow - check it out at http://www.lunchforlife.org/
My mom and Hans at the Grassy Knoll.
I hope all of your Christmas eves are just as bustling and as exciting as ours! The kids are SO excited that Santa is coming tomorrow. Thanks to our families who have spoiled us with packages. Our tree is busting out with gifts.
We just got back from a quick fun trip to Dallas. We went up to the American Girl store and Elle got an outfit for her doll, Marisol, and some underthings too! We also saw the grassy knoll and the window of the 6th floor book depository. It was sooo cold up there that we didn't take the tour of Southfork Ranch as planned. We'll save that for a warmer visit.
I asked my mom to snap this photo of Papa, my grandpa. He has been busy baking and baking cookies for everyone. It's just one of the many many things we are still homesick about at this time of year. Merry Christmas to all! We miss our family and friends up in WA more than ever this time of year!!!
I went a little photo crazy - see below...
Love, Lara and all...
PS the ornaments just keep popping up. I looked again this morning and we're up to 2394 this monring! Wow - check it out at http://www.lunchforlife.org/
My mom and Hans at the Grassy Knoll.
Hans and I under the window - second from top on the right.
Elle and Hans watching some teens play hockey - check out the curls~!
Okay - Vickie - here is what the wreath cookies are "supposed" to look like. It's a very loose art form!
Wednesday, December 19, 2007
Wow - you guys are AWESOME!!!
Okay - take a look at Hans' Giving Tree now - 2234 Ornaments! We're blown away and humbled. My mom says she knows we're going to make a big difference! This year, Hans and Carlie's campaigns will be combined to fund an important research project right at TCH with Dr. Russell. We're so proud of everyone's generous giving. It's amazing.
On another note - Hans remains the cutest little puzzle ever. Yesterday I thought we'd just breeze through a quick "pointment" but everyone was thrown off when Hans' Hemoglobin came back through the roof at 16.3! We actually spent the whole afternoon ruling out a heart condition. Fortunately, I somehow maintain my innocent optimism or naivete - I "knew" all day long that his heart was fine. So, thankfully the chest x-ray, oxygen saturation and EKG they ordered yesterday backed me up. Now - they're thinking his kidneys are wiggin' out a little, either that or that the steroids dose needs to be tweaked. They're running one blood test that will help determine which is the case. We'll get that back in a couple days. Hans was such a good sport throughout our day long surprise adventure yesterday. It didn't hurt that there were all kinds of people up there handing out gifts. Our little sweet friend Chloe had her whole brownie troop up there handing out 7 carloads of Christmas gifts for the patients. So, Hans scored some cool gifts to keep him occupied. We even got a gift card out to Pappasito's that the troop had donated. It was extremely generous and wonderful! Apparently, I passed right by Craig Biggio yesterday! Whoops - Chloe had this Baseball hero there to help her hand out all those gifts. I know it was a great day for her whole family:) Kevin was horrified that I was oblivious to "Big" - whoops - and I even have a Biggio T-shirt!
Kev was happy to find out that he has several vacation days remaining at work that he didn't even really know about. He'll get to spend some relaxing days off with Hans! And - yes, Kathy - Hans is starting to sport some gorgeous curls once again. He has lot of curls in the back. It's so soft and fine that I tell everyone to feel it! Before, his wild curls were actually pretty course. I wonder if it'll change as it grows - probably!
Okay - we'll keep you posted. Elle's last day of school is today and I think everyone is ready for the break...
Lara
PS - we got some good news. Orange the cat had xrays today and he checked out okay. It's amazing that he's actually healing up! Now the challenge will be trying to keep him inside for a couple of weeks.
On another note - Hans remains the cutest little puzzle ever. Yesterday I thought we'd just breeze through a quick "pointment" but everyone was thrown off when Hans' Hemoglobin came back through the roof at 16.3! We actually spent the whole afternoon ruling out a heart condition. Fortunately, I somehow maintain my innocent optimism or naivete - I "knew" all day long that his heart was fine. So, thankfully the chest x-ray, oxygen saturation and EKG they ordered yesterday backed me up. Now - they're thinking his kidneys are wiggin' out a little, either that or that the steroids dose needs to be tweaked. They're running one blood test that will help determine which is the case. We'll get that back in a couple days. Hans was such a good sport throughout our day long surprise adventure yesterday. It didn't hurt that there were all kinds of people up there handing out gifts. Our little sweet friend Chloe had her whole brownie troop up there handing out 7 carloads of Christmas gifts for the patients. So, Hans scored some cool gifts to keep him occupied. We even got a gift card out to Pappasito's that the troop had donated. It was extremely generous and wonderful! Apparently, I passed right by Craig Biggio yesterday! Whoops - Chloe had this Baseball hero there to help her hand out all those gifts. I know it was a great day for her whole family:) Kevin was horrified that I was oblivious to "Big" - whoops - and I even have a Biggio T-shirt!
Kev was happy to find out that he has several vacation days remaining at work that he didn't even really know about. He'll get to spend some relaxing days off with Hans! And - yes, Kathy - Hans is starting to sport some gorgeous curls once again. He has lot of curls in the back. It's so soft and fine that I tell everyone to feel it! Before, his wild curls were actually pretty course. I wonder if it'll change as it grows - probably!
Okay - we'll keep you posted. Elle's last day of school is today and I think everyone is ready for the break...
Lara
PS - we got some good news. Orange the cat had xrays today and he checked out okay. It's amazing that he's actually healing up! Now the challenge will be trying to keep him inside for a couple of weeks.
Sunday, December 16, 2007
We just made total elves of ourselves...
Oh cool, Carmen just sent us this photo from her new camera - thanks Carm! Here's me and Kev at Saturday night's party. You notice Kev's hair. He has actually decided to grow it out for Locks of Love. Some kid is going to get a pretty cool wig one day!
This is fun - I've gotten a couple emails now of Office Max's Elf Yourself - thanks, Sonya, and Sasha! We uploaded our pictures this morning - check it out, and then follow the links to make one of yourself. It's pretty fun!!! The kids were both squealing as we watched it!
http://www.elfyourself.com/?id=1452630039
We're just fine here. We had a fun and successful night out last night. The party was festive and the kids had fun with Courtney! Hans still has a runny nose - but he seems to be doing okay!
Orange has only three more days of isolation. I take him back in for an x-ray on Wednesday. Hans has his appointment on Tuesday. Then my mom gets in Friday.
Elle and her friend Shane - they've been buds since kindergarten!
http://www.elfyourself.com/?id=1452630039
We're just fine here. We had a fun and successful night out last night. The party was festive and the kids had fun with Courtney! Hans still has a runny nose - but he seems to be doing okay!
Orange has only three more days of isolation. I take him back in for an x-ray on Wednesday. Hans has his appointment on Tuesday. Then my mom gets in Friday.
Elle and her friend Shane - they've been buds since kindergarten!
Lara, Carmen, Angela, Molly, Dana and Vickie at last night's Holiday Party for our Playgroup.
Hans taking care of his kitty, Orange. Orange has now lived in this crate in the dining room for 5 1/2 weeks.
I failed to get a pic of me and Kev last night - but I think Carmen may have gotten one!
Elle got to go out skating again yesterday - our friends Anne and Eric and Kira came and picked her up and then they went back to Kira's to make styrofoam snowmen with accessories. She had a great time.
I'll take a picture of the green wreath cookies when we make the next batch!
I'll take a picture of the green wreath cookies when we make the next batch!
Lara
Thursday, December 13, 2007
Thursday
Hi there -
Well, we finally have some seasonal weather here! Yay! It's chilly in Texas - much better than record breaking heat of the past week. "Quick" post:
-Hans' counts are all in the normal range. His Potassium and Sodium are both on the low end of normal. (I'm a little puzzled by why that would be since he is still taking his Potassium tablet once a day and his potassium has been fine for months and months, but???)
- Hans still has some congestion and now we're bumping him back down to daily dose of steroids. We'll see how that goes and hope his nose clears up some how. He has really had no other symptoms...
- The parent meeting was kind of informative on insurance issues. I am still having recurring problems processing 8 - 10 of our claims from United Health Care. If I could tell you how many hours I spend on the phone. For some reason I don't handle this well and I get very upset. I think it's because I have so little control over the situation. I can't process the claims, I can't see the person face-to-face. But, "hopefully" my last two hour session on the phone last week did the trick and everything is being taken care of - that's all I want for Christmas!
- My mom is flying back down for Christmas and we have plans to do a little sightseeing trip to Dallas. We'll see how Hans is doing before we decide if we're going to go through with it or not!
We also have a wonderful babysitter (future oncologist Courtney Sweebe) lined up for Saturday night for a Holiday Party. This will be our first adventure together out with a sitter!
-Kevin's well has finally calmed down, thank Goodness!
That's all that's going on here. Oh, other than the fact that Hans picked out a "real" outfit today! No Jammies! He wore Jean shorts, no socks, a long-sleeved orange T shirt under a bright blue and yellow Floral shirt. I should have gotten a picture! It was quite a sight. Elle is bringing Green Wreath Cookies to class tomorrow, sharing one of her family traditions. I better go make them, YUM!
Lara
Well, we finally have some seasonal weather here! Yay! It's chilly in Texas - much better than record breaking heat of the past week. "Quick" post:
-Hans' counts are all in the normal range. His Potassium and Sodium are both on the low end of normal. (I'm a little puzzled by why that would be since he is still taking his Potassium tablet once a day and his potassium has been fine for months and months, but???)
- Hans still has some congestion and now we're bumping him back down to daily dose of steroids. We'll see how that goes and hope his nose clears up some how. He has really had no other symptoms...
- The parent meeting was kind of informative on insurance issues. I am still having recurring problems processing 8 - 10 of our claims from United Health Care. If I could tell you how many hours I spend on the phone. For some reason I don't handle this well and I get very upset. I think it's because I have so little control over the situation. I can't process the claims, I can't see the person face-to-face. But, "hopefully" my last two hour session on the phone last week did the trick and everything is being taken care of - that's all I want for Christmas!
- My mom is flying back down for Christmas and we have plans to do a little sightseeing trip to Dallas. We'll see how Hans is doing before we decide if we're going to go through with it or not!
We also have a wonderful babysitter (future oncologist Courtney Sweebe) lined up for Saturday night for a Holiday Party. This will be our first adventure together out with a sitter!
-Kevin's well has finally calmed down, thank Goodness!
That's all that's going on here. Oh, other than the fact that Hans picked out a "real" outfit today! No Jammies! He wore Jean shorts, no socks, a long-sleeved orange T shirt under a bright blue and yellow Floral shirt. I should have gotten a picture! It was quite a sight. Elle is bringing Green Wreath Cookies to class tomorrow, sharing one of her family traditions. I better go make them, YUM!
Lara
Friday, December 07, 2007
Seeing Santa
So - last night we took the kids to see Santa! I think this is kind of cheating for me to post this, I just ordered photo Christmas cards with this picture, so now everyone can see it a week or so early. The cool thing was that Hans was totally into it. He was the nicest Santa! We didn't get to go do the Santa thing last year - so it was extra special this year. Hans told Santa he wanted a Hot Wheels Track and Elle said she wanted a new fashion design game for her Nintendo DS and a bathrobe. I think he can handle that! We also had a festive night going out for a bite to eat on Market Street. Poor Kev has still been working so hard he wasn't there to join us. But, I think he's finally got his wells figured out so he shouldn't have to work too hard this weekend!
Hans has still had a cold all week - which concerns us - because he has been on stress dose steroids all week, and every single time he's had a Hypoglycemic incident he has had a clear runny nose. But, hopefully it'll just clear up and move on. Hans' counts this week came back okay, but a little funny - Potassium lower than it has been even though he has been taking a Potassium Supplement??? So, they're going to have him come back for more counts next Thursday. Then, our next Office Visit is the following Tuesday. I'll keep you posted.
Please keep Carlie in your prayers this week. Her family has found out this week that her tumor has spread to her hips and possibly ribs and neck. Dr. Russell is helping her family to tweek her treatment plan to get the tumors under control. They could use your prayers now. Little Ryan a.k.a Batman is also getting scan results back this week, and Chloe Castillo has started a new treatment regimen. Thanks for keeping them all in your prayers, along with the other children...
Lara
Hans has still had a cold all week - which concerns us - because he has been on stress dose steroids all week, and every single time he's had a Hypoglycemic incident he has had a clear runny nose. But, hopefully it'll just clear up and move on. Hans' counts this week came back okay, but a little funny - Potassium lower than it has been even though he has been taking a Potassium Supplement??? So, they're going to have him come back for more counts next Thursday. Then, our next Office Visit is the following Tuesday. I'll keep you posted.
Please keep Carlie in your prayers this week. Her family has found out this week that her tumor has spread to her hips and possibly ribs and neck. Dr. Russell is helping her family to tweek her treatment plan to get the tumors under control. They could use your prayers now. Little Ryan a.k.a Batman is also getting scan results back this week, and Chloe Castillo has started a new treatment regimen. Thanks for keeping them all in your prayers, along with the other children...
Lara
Tuesday, December 04, 2007
Sunday, December 02, 2007
Busy Weekend
Hi,
Well, things are going well so far. I am really hesitant to post something like that, because it seems like every time I do, my next post is from TCH - but - so far so good. Hans does have a little cold/runny nose, so we are stress dosing him, but other than that, he's good. Here are some pictures - play date with Ryan and Adrian on Friday, getting our Christmas Tree, showing off new Cars Shoes while sporting Dino-Camo PJs, and then soccer with Hans and Courtney, and Elle and Isa on the field.
We were out at the are U9 Soccer tournament ALL DAY yesterday - with a break to go find a tree. So, that worked out! Elle's team didn't win yesterday but they played really hard and Elle played REALLY REALLY hard. That's what meant the most to me. She was in it to win it! It's just cool that she's on a team with another great group of girls, who'll stick together in the Spring. We've got her signed up for Basketball again, so we'll have winter action! Hans did his best job out of this whole season cheering his sister and her team on. He hung in there for half of the games and was saying things like "Go Ellie! Get the ball!"
I was so pleased to learn yesterday that our family friend Courtney Sweebe (who has known Hans since about age 6 months) has decided that she's going to work toward becoming a Pediatric Oncologist. Courtney is in tenth grade at College Park High school and she is a dedicated student and athlete and a wonderful kid! I am deeply touched by her choice and I am confident that she can achieve this colossal goal! Go Courtney! I'm so proud of you, we need smart people like you dedicated to figuring out how to wipe Pediatric Cancers off the face of the planet!
Kevin has been working around the clock as TWO of his wells have reached "total depth" this weekend. So he's been on the phone and at the computer since the wee hours...
We just go in for counts at a lab here in The Woodlands on Monday - we'll take a look at Hans' Sodium and Potassium levels and go from there!
On another note: Ryan and Carlie will be receiving scan results this week. Please keep these two beautiful little troopers in your prayers. Good news: Colby's scans last week showed SHRINKAGE!
Lara
Wednesday, November 28, 2007
Just a quick post. First photo - our Brownie Troop last night at Build A Bear. The girls used their cookie money to build bears in teams that will be donated to needy children this Christmas. I'm very impressed with the generousity of our girls. After this past year, I am clearer than ever on the collective importance of charitable efforts. If we can all give just a little, consistently, it will make the world a better place for us all. Thanks again to all of you have given generously to Hans' Lunch for Life campaign. Hans' tree has filled out quite nicely - with 1,881 ornaments as of this evening! You can always check it out at www.lunchforlife.org.
Every time I take a photo of Hans with this new camera - he snaps one of me with his new "camera" just a toy from Jack in the Box. And Elle took the third picture of herself and I love it! Kevin and Hans were cute this weekend. Kevin got a new video game for his "hospital" portable play station. Every time Hans saw his dad playing the game he'd say, "Oh, we're playing Leapster (that's Hans' portable video game system), and he run and get it and sprawl out next to daddy to play.
Hans update: His Potassium was up to 4.4 (normal) as of Monday. But, after that, we're feeling just a little lost in the shuffle b/w the Cancer Center and Endocrinology. We've bumped his second steroid back up to full strength, and cut his Potassium in half. We have yet to hear when we go back in to re-check counts. Maybe tomorrow??? I'll keep you posted.
My big news is that I had the opportunity, or better yet, the necessity to buy Hans new shoes today! He had finally grown out of his battered Cars shoes and the only way to part with them was to find a new pair. I'll try to get a picture to post here soon. I'm just excited to see some measurable growth in the little dude! Way to Grow, bud!
Lara
Friday, November 23, 2007
Hans is Coins4kids.org featured kid for November! (aka Mr. November)
2nd post:
We did hear from the on-call doc that Hans' Potassium had risen .8 since Wednesday, that's great and just .6 to go til "normal" range. I guess they'll want to see us Monday or Tuesday to re-check. I'm hoping it's Tuesday. They're having a Christmas party up there and Hans may just as well have a little fun...
Elle got to go skating today with her friend Caley! Thanks for taking her, Sheri, it was good to see you guys!
Hi Guys,
I just realized that they picked Hans as the featured kid for the November Coins4Kids page. It's pretty cute! Check it out, and order your piggy bank, too. All proceeds you save up and cash in go right to the Children's Neuroblastoma Cancer Foundation, just like Lunch for Life: http://www.coins4kids.org/novemberfeaturedkids.htm
I thought I should post again, just because I was kind of bummin' out after all that Hospital action on Wednesday. Yesterday we actually had a nice and relaxing and quiet day. We rented a couple of movies and hung out and played games and did a lot of Hans' very favorite activity of late - snuggled! He has got to be about the snuggliest little 4-year-old boy out there! The meal from HEB was pretty darn good. We just spruced it up with Kevin's sweet potatoes and Elle and Hans and I made an apple pie. It all turned out very nice and we are still full! We know how much we have to be thankful for! Thanks to all of you, for all of your prayers and support this past year. We hope you all are having a lovely holiday!
Today - Kevin and Hans are going to do a guy run down to the clinic for counts. I hope all goes well, our regular floor is closed today, so they'll be going to another part of the hospital. They just want to see the Potassium numbers creeping back up. Hans has been a total CHAMP swallowing the huge Potassium pill. He takes it like he did the Accutane, in a teaspoon of Reddi Whip. I'm very proud to see him swallow such a huge pill!
Elle and I are snaking out of hospital duty to do a little shopping. I need to replace both my cell phone and our digital camera! Thanks to Kathy, Debi, Holly and Susan for getting us the perfect early Christmas gift of a new camera. I figure there'll be a good deal today. Elle and I are brave enough to go out there with the masses! Tomorrow Elle and I are going to the Nutcracker with Ginger, Morgan and Adrian. And, Marlene asked me to stop by the Woodlands Fit Run in the morning to possibly hand out LFL bags! I'll try to post again soon with the good news that the potassium is perking up!
Lara
We did hear from the on-call doc that Hans' Potassium had risen .8 since Wednesday, that's great and just .6 to go til "normal" range. I guess they'll want to see us Monday or Tuesday to re-check. I'm hoping it's Tuesday. They're having a Christmas party up there and Hans may just as well have a little fun...
Elle got to go skating today with her friend Caley! Thanks for taking her, Sheri, it was good to see you guys!
Hi Guys,
I just realized that they picked Hans as the featured kid for the November Coins4Kids page. It's pretty cute! Check it out, and order your piggy bank, too. All proceeds you save up and cash in go right to the Children's Neuroblastoma Cancer Foundation, just like Lunch for Life: http://www.coins4kids.org/novemberfeaturedkids.htm
I thought I should post again, just because I was kind of bummin' out after all that Hospital action on Wednesday. Yesterday we actually had a nice and relaxing and quiet day. We rented a couple of movies and hung out and played games and did a lot of Hans' very favorite activity of late - snuggled! He has got to be about the snuggliest little 4-year-old boy out there! The meal from HEB was pretty darn good. We just spruced it up with Kevin's sweet potatoes and Elle and Hans and I made an apple pie. It all turned out very nice and we are still full! We know how much we have to be thankful for! Thanks to all of you, for all of your prayers and support this past year. We hope you all are having a lovely holiday!
Today - Kevin and Hans are going to do a guy run down to the clinic for counts. I hope all goes well, our regular floor is closed today, so they'll be going to another part of the hospital. They just want to see the Potassium numbers creeping back up. Hans has been a total CHAMP swallowing the huge Potassium pill. He takes it like he did the Accutane, in a teaspoon of Reddi Whip. I'm very proud to see him swallow such a huge pill!
Elle and I are snaking out of hospital duty to do a little shopping. I need to replace both my cell phone and our digital camera! Thanks to Kathy, Debi, Holly and Susan for getting us the perfect early Christmas gift of a new camera. I figure there'll be a good deal today. Elle and I are brave enough to go out there with the masses! Tomorrow Elle and I are going to the Nutcracker with Ginger, Morgan and Adrian. And, Marlene asked me to stop by the Woodlands Fit Run in the morning to possibly hand out LFL bags! I'll try to post again soon with the good news that the potassium is perking up!
Lara
Wednesday, November 21, 2007
Wednesday
Okay - so it's been a while since I posted. Holly - have fun in Hawaii! PL - have a great turkey day at home. Wish we could just show up with out the flight and all that jazz... Thanks Sheila, for your offer of sending a copy out. I hope people take you up on that. I got three copies of the paper, Kevin took one to work and I haven't done anything with the others.
I feel a little pitiful tonight. We had a great appointment on Monday and actually found an Endocrinologist we really connected with! This was very exciting! Until we met Dr. Jeha we hadn't really gotten a good explanation for Hans' Hypoglycemic incidents. After meeting with him it seems to make a bit more sense. We also had a good appt. Tuesday with Dr. Russell. She actually seemed to have lightened up her attitude. She said we'll just take the Accutane on a monthly basis. This month we'll be off. So, maybe we can enjoy the month. I thought - okay -- no planned visits for four weeks. Will we make it ? Then, my cell phone rang. It was the clinic - Hans' Potassium was low in his labs, have him come back tomorrow to retest. So, we went back in today. We had them redrawn and I was sure they'd be fine - just a bad test - he's acting great. But no, they actually dropped .1! Ugh - so the docs and Shari did some thinking and consulting with Endocrine and they figured that Hans has been having too much Florinef, one of his daily steroids, while he has been on his stress dose of Hydrocortisone. So, we're going to try to give him some oral Potassium and then cut his Florinef in half and go back on Friday! UGH! I just counted it all up and we've had 8 medical rendez-vous in the past 11 days, by Friday it'll be 9 in 2 weeks. Before he had his incident last Sunday only two of these visits were on the books. It's pretty exhausting! I just can't believe Kevin is making it in to work! He has become quite the papa bear looking out for Hans, and his instincts were right on the money about the Potassium. Poor Elle was sick on Monday, and off today, so she accompanied me to two of these visits. But, she's a pretty good sport. They both are really.
For Thanksgiving, Kevin and I hadn't planned much. Planning seems to be such a joke lately, that we actually waited until today to order a pre-prepared Thanskgiving dinner from the grocery store. Turkey always sounds good though!
Thanks for your prayers. Please try to say a special prayer for our dear sweet little friend Chloe today. She has relapsed Ewing's Sarcoma and the docs have just told her family that her current treatment plan isn't quite doing the trick. She's seeking the advice of a new team of doctors and looking into some experimental treatments. She is one of the sweetest little girls I have ever met. Also, we can always think of our TCH friends with relapsed NB: Carlie, Ryan, Colby and Erin, as we also pray that Patrick, Hans, Roman, Will and Chloe will remain "NED". Thanks!
Lara
I feel a little pitiful tonight. We had a great appointment on Monday and actually found an Endocrinologist we really connected with! This was very exciting! Until we met Dr. Jeha we hadn't really gotten a good explanation for Hans' Hypoglycemic incidents. After meeting with him it seems to make a bit more sense. We also had a good appt. Tuesday with Dr. Russell. She actually seemed to have lightened up her attitude. She said we'll just take the Accutane on a monthly basis. This month we'll be off. So, maybe we can enjoy the month. I thought - okay -- no planned visits for four weeks. Will we make it ? Then, my cell phone rang. It was the clinic - Hans' Potassium was low in his labs, have him come back tomorrow to retest. So, we went back in today. We had them redrawn and I was sure they'd be fine - just a bad test - he's acting great. But no, they actually dropped .1! Ugh - so the docs and Shari did some thinking and consulting with Endocrine and they figured that Hans has been having too much Florinef, one of his daily steroids, while he has been on his stress dose of Hydrocortisone. So, we're going to try to give him some oral Potassium and then cut his Florinef in half and go back on Friday! UGH! I just counted it all up and we've had 8 medical rendez-vous in the past 11 days, by Friday it'll be 9 in 2 weeks. Before he had his incident last Sunday only two of these visits were on the books. It's pretty exhausting! I just can't believe Kevin is making it in to work! He has become quite the papa bear looking out for Hans, and his instincts were right on the money about the Potassium. Poor Elle was sick on Monday, and off today, so she accompanied me to two of these visits. But, she's a pretty good sport. They both are really.
For Thanksgiving, Kevin and I hadn't planned much. Planning seems to be such a joke lately, that we actually waited until today to order a pre-prepared Thanskgiving dinner from the grocery store. Turkey always sounds good though!
Thanks for your prayers. Please try to say a special prayer for our dear sweet little friend Chloe today. She has relapsed Ewing's Sarcoma and the docs have just told her family that her current treatment plan isn't quite doing the trick. She's seeking the advice of a new team of doctors and looking into some experimental treatments. She is one of the sweetest little girls I have ever met. Also, we can always think of our TCH friends with relapsed NB: Carlie, Ryan, Colby and Erin, as we also pray that Patrick, Hans, Roman, Will and Chloe will remain "NED". Thanks!
Lara
Sunday, November 18, 2007
Hello...
Okay - things are starting to settle down a bit. Hans is perking up. But, yesterday he had to miss his buddy's bday party. Shhh... we didn't remind him. Elle went, but now she's out with a stomach bug! Poor thing.
I have just a couple of quick announcements or things I want to tell ya:
Check out this article: http://www.thecourier-online.com/site/news.cfm?newsid=19035267&BRD=1574&PAG=461&dept_id=532215&rfi=6 It's a story on Hans, Carlie, Will and Roman. The four kids fighting NB right here in the woodlands. The photo doesn't show up online, but I ran up to Randall's (grocery store-like Safeway to those on West Coast) and got the last copy. It is on the front page of the Sunday paper with a huge color photo of the four kids. We all got together on Thursday and I just ran Hans over to Charon's for the picture. I didn't want him spreading a possible virus to the other kiddos - it worked out okay. Thanks to Charon for doing a great job of making that article happen!
Also, we are Aunt and Uncle and First Cousins for the first time ever! Kev's sister Anna, gave birth to baby Emma Harvey this week! I'm so excited and I know Matt and Anna are proud new parents and Grandpa Dean and Grandma Diana are proud grandparents once more, just as Great Grandma and Grandpa Web are proud great grandparents once again! It's fun to have such a joyous event in the family to celebrate!! Welcome Baby Emma! I want to post your picture soon!!!
Finally, I want to post this picture of my Uncle Dean! I'm so proud of him for collecting pop tabs for the Ronald McDonald house. He only gets one soda a day, so he has been hard on the look out for all these others. Uncle Dean is Hans' godfather. I think it's cool that he has been collecting tabs for the RM House for years! He sent his most recent batch to Michael Smiley to support his cub scout troop's efforts to save up tabs for the RM house.
That's all for now! Thanks for all your posts, emails and calls after our rough week.
Lara
Friday, November 16, 2007
What a week!
So, our rough luck continued beyond Sunday. I am just now getting to post. We went back into the ER early Tuesday morning. Hans had some serious diarrhea at about 2:30 am, then we noticed a fever, first of 102.2 and then it rose to 103. something, then he had more diarrhea, we called the oncall doc and headed down to the ER. The poor baby was vomiting on the way down. We got there at about 6am. They just gave Hans fluids, and, figuring it was likely viral, didn't dose him with Antibiotics. He only vomited once more at the ER. We were sent home by 3pm. My mom was supposed to fly out on Tuesday, but pushed her flight back to Wednesday. Then, early Wednesday morning, Hans had another fever, we gave him Tylenol and then watched it continue to rise. At 1:30 am it hit 103.9 so we called the oncall docs once again, and we were headed down to the TCH ER for the second consecutive late night/early morning run. He was again given fluids and stress doses of Hydrocortisone via IV, and this time a broad spectrum antibiotic. Just in case. They are still thinking it was viral. We were sent home just after 7, and somehow Kevin went into work after those two rough nights. Hans has remained borderline stable. He is not totally wanting to drink, so we are forcing it on him. His diarrhea hasn't completely subsided and he just acts like his tummy doesn't feel right. He isn't eating much.
Then, on Thursday, I decided to keep his TCH Dental appointment. I was pleased that they only found one small cavity which they said I could sit on and come back in 6 months! Thank God! With all the sugars we have had to push on him to keep him stable, I thought it might be much, much worse. In fact I totally lost it in the dental room and the tech just gave me a big hug and said, "You've gotta keep his sugars up, mama!" She made me feel better and deserves a gold star!
We also met with Dr. Russell for a conference after all this yucky stuff has been going on. She told us she wants to keep Hans off Accutane for December and January. She suspects that the Accutane is somehow acting to weaken Hans' already compromised immune system. I took this news pretty hard, as Accutane is the best known defense against the significant risk of relapse. We just need your prayers now, for Hans' increased health and stability; for Hans to get well enough to continue his course of Accutane. Hans is a complicated case and he is sort of charting the course for how to recover from the Neuroblastoma treatment protcol without the benefit of adrenal function. Thank you for including him in your prayers. Thank you for going online to http://www.lunchforlife.org/ and giving a little to help fund research to make these treatments better.
The up side was that my mom was here for all three trips to the ER. Can you imagine what a blessing that was? Elle was taken care of, she got to school, managed to keep up with all her homework and reading and extra projects this week. She's quite the young lady!
I'll keep you posted. We meet with TCH Endocrine on Monday, and Hans has his monthly office visit on Tuesday. I'm once again logging many hours in the car to and from the hospital. But - I've been checking out books on tape from the library. It helps and Hans doesn't mind at all!
Thanks again for your prayers. And, thanks to Laurie Miller for taking care of Elle and getting her to the Pump it Up party on Tuesday while we hung out with my mom and stayed home with Hans. Sorry to Alana, for having to cancel taking care of Zach while you wre at your pre-op appointment. I'm glad to hear the op went well! Sorry to Glen Loch for backing out as a chaperone for Tuesday night's party! Guess I should try not to commit to too much these days!
Lara
Then, on Thursday, I decided to keep his TCH Dental appointment. I was pleased that they only found one small cavity which they said I could sit on and come back in 6 months! Thank God! With all the sugars we have had to push on him to keep him stable, I thought it might be much, much worse. In fact I totally lost it in the dental room and the tech just gave me a big hug and said, "You've gotta keep his sugars up, mama!" She made me feel better and deserves a gold star!
We also met with Dr. Russell for a conference after all this yucky stuff has been going on. She told us she wants to keep Hans off Accutane for December and January. She suspects that the Accutane is somehow acting to weaken Hans' already compromised immune system. I took this news pretty hard, as Accutane is the best known defense against the significant risk of relapse. We just need your prayers now, for Hans' increased health and stability; for Hans to get well enough to continue his course of Accutane. Hans is a complicated case and he is sort of charting the course for how to recover from the Neuroblastoma treatment protcol without the benefit of adrenal function. Thank you for including him in your prayers. Thank you for going online to http://www.lunchforlife.org/ and giving a little to help fund research to make these treatments better.
The up side was that my mom was here for all three trips to the ER. Can you imagine what a blessing that was? Elle was taken care of, she got to school, managed to keep up with all her homework and reading and extra projects this week. She's quite the young lady!
I'll keep you posted. We meet with TCH Endocrine on Monday, and Hans has his monthly office visit on Tuesday. I'm once again logging many hours in the car to and from the hospital. But - I've been checking out books on tape from the library. It helps and Hans doesn't mind at all!
Thanks again for your prayers. And, thanks to Laurie Miller for taking care of Elle and getting her to the Pump it Up party on Tuesday while we hung out with my mom and stayed home with Hans. Sorry to Alana, for having to cancel taking care of Zach while you wre at your pre-op appointment. I'm glad to hear the op went well! Sorry to Glen Loch for backing out as a chaperone for Tuesday night's party! Guess I should try not to commit to too much these days!
Lara
Monday, November 12, 2007
Wow! What a Weekend!
Okay - this time I mean that in both a good and a not-so-good way.
I'll do the not-so-good first: Hans woke up groggy and out of it on Sunday and we checked his
blood glucose and it was at 31! Dang - had to call 911 and rush off to the ER. He remained awake and stable and mostly with it- just a six hour tour of the St. Luke's at the Woodlands ER. It was our first time receiving treatment outside of TCH and that part actually went okay. We're working on getting him seen this morning and getting more clues on how to prevent these episodes... He had a slight cold, but had just checked out at the pediatrician on Friday with no ear infection and no fever...
Unfortunately, Hans had to miss his big Lunch for Life Block Party:( But, we all had fun! And our amazing neighbors raised $500 for Neuroblastoma Research and we had an awesome time. The big organizers of the bock party, Mark and Michelle Nolen (in kahootz with Kevin and Elle) gave me the surprise of a lifetime. They arranged to have my mom fly out for the party on a buddy pass! (Mark is a pilot for Continental.) Was I surprised! And, it worked out perfectly that my mom was here to take care of Elle while we took Hans up to the ER. He was discharged by 2:30pm and we were all able to do a shift at the party! Hans was fine at home, he was stable by the afternoon. Right now he is playing in his new sandbox. It was supposed to be a big surprise for the block party. Michelle's parents, Mathilda and Lonnie Minz got it for him since he had so much fun with Jack's over at their house. (Two weeks ago at baby Josh's christening party, Hans played in their sandbox for seriously 3 1/2 hours straight. That's when Mathilda decided she was getting Hans one of his own!) Pretty incredible family. We are fortunate to be blessed with many sweet neighbors. Everyone pitched in for food. Becky did a beautiful Lemonade stand, and Michaella and Tyson provided a bouncy house! So cool...Above!
Lara
Saturday, November 10, 2007
Thursday, November 08, 2007
Crazy Week!
Wow - we had a little excitement around here this week. Thankfully, it had nothing to do with Hans. One of our cats, Orange (Hans' favorite), must have gotten hit by a car on Tuesday morning. He was acting strange and not walking right. But, he managed to crawl up under the deck. Kev had to pry up a deck board to get him out so we could get him to the vet. Xrays revealed a fractured pelvis. They kept him in "intensive care" overnight to see if he was going to make it. Fortunately, he pulled through. Now we have him crated and he has to live in there for 6 weeks to allow his pelvis to heal. Poor kitty. He's on a Fentanyl patch and we'll have to give him oral narcotics for a while. Geez! Thanks, Ginger, for loaning us a crate and an extra kitty box and saving me a trip to the store!
Other than that, Hans is still holding his own with 3.5 days to go on Accutane for this round.
It's nice to have such great help with Hans' LFL campaign. Thanks to everyone helping us pass out bags all over the place:
The Woodlands, TX, Raton, NM, Chicago, IL, Scottsdale, AZ, Santa Cruz, CA, Portland, OR, Seattle, WA, Edmonds, WA, Bellingham, WA, Ellensburg, WA and Mattawa, WA. It's pretty cool to see Hans' tree grow. I'm going to order more bags next week, so please let me know if you want more.
Our wonderful neighbors are throwing a Lunch for Life Block Party/Potluck for Hans on Sunday. We're all really looking forward to it and I hope to have pictures to post for you soon.
Elle is doing great and we're enjoying a week of light homework after progress reports came out last week. She's doing well and has worked hard in 3rd grade. She's learned all the lowercase cursive letters and they're about to begin both uppercase letters and multiplication! She's getting so grown up!
Lara
Other than that, Hans is still holding his own with 3.5 days to go on Accutane for this round.
It's nice to have such great help with Hans' LFL campaign. Thanks to everyone helping us pass out bags all over the place:
The Woodlands, TX, Raton, NM, Chicago, IL, Scottsdale, AZ, Santa Cruz, CA, Portland, OR, Seattle, WA, Edmonds, WA, Bellingham, WA, Ellensburg, WA and Mattawa, WA. It's pretty cool to see Hans' tree grow. I'm going to order more bags next week, so please let me know if you want more.
Our wonderful neighbors are throwing a Lunch for Life Block Party/Potluck for Hans on Sunday. We're all really looking forward to it and I hope to have pictures to post for you soon.
Elle is doing great and we're enjoying a week of light homework after progress reports came out last week. She's doing well and has worked hard in 3rd grade. She's learned all the lowercase cursive letters and they're about to begin both uppercase letters and multiplication! She's getting so grown up!
Lara
Monday, November 05, 2007
Poem by Elle
Here's a poem that Elle came up with last week:
My name is Elle,
I am a bell,
I may have fell,,
Oh well!
Elle
My name is Elle,
I am a bell,
I may have fell,,
Oh well!
Elle
Bone Marrow Clean!
Hi there,
Just wanted to share the good news we found out today that Hans' Bone Marrow Biopsy was clear! Thanks for everyone's prayers.
We did have a mellow weekend and enjoyed just getting a chance to do random things around the house - spot clean the carpet, clean the kitchen window, etc. etc. Kevin trimmed up the yard and Hans had fun spraying all of us with the hose.
Elle's soccer team, The Dragons, chalked up their first tie of the season. We found out that they will make it to the City Playoffs! It's pretty exciting. We always played at the Y up until now, and they didn't even keep score. It's fun to see the girls playing out there.
That's it for now!
Lara
Just wanted to share the good news we found out today that Hans' Bone Marrow Biopsy was clear! Thanks for everyone's prayers.
We did have a mellow weekend and enjoyed just getting a chance to do random things around the house - spot clean the carpet, clean the kitchen window, etc. etc. Kevin trimmed up the yard and Hans had fun spraying all of us with the hose.
Elle's soccer team, The Dragons, chalked up their first tie of the season. We found out that they will make it to the City Playoffs! It's pretty exciting. We always played at the Y up until now, and they didn't even keep score. It's fun to see the girls playing out there.
That's it for now!
Lara
Saturday, November 03, 2007
More Halloween Pictures!
Our Neighbor, Alana, just sent us these pictures. Hans and Elle, Hans and Elle with neighbors Jack and Zach, and then one of our newest little neighbor, baby Zoe, just over 1 month old.
We got through Hans' two appointments this week! Yesterday, we finished with the Audiogram and had enough time to go to the zoo. We saw the aquarium and then went right to the food court where Hans ordered both a kids chicken nugget meal and a slice of pepperoni pizza. This round of Accutane has been okay so far, he seems to be tolerating the increased dose now for the first 5 days.
Still no official word on the Bone Marrow...I called and left a message, but I haven't heard back. I assume that if they did find something in there they'd be treating it by now, but still it'd be nice to know. We are happy to have a sort of quiet weekend with not a lot going on other than soccer and CCE this morning.
Thanks for all your LFL contributions. Hans' tree looks great. He likes to look at it, when I'm on the computer he'll come up to me and say, "let's check out my tree!"
Thanks for all your LFL contributions. Hans' tree looks great. He likes to look at it, when I'm on the computer he'll come up to me and say, "let's check out my tree!"
Wednesday, October 31, 2007
Happy Haunting!
Here we have Hans as Buzz Lightyear, Elle as Elizabeth Swan of Pirates of the Carribean, Michael as SuperMario, Morgan as witch, Adrian as PowerRanger, and Ryan as The Boss. Hans actually had a remarkable amount of energy. We did a Halloween Party at our old Playgroup, we trick or treated at Panther Creek, our neighborhood shopping center with friends, and trick or treated the neighborhood with our neighbor Jack and his dad Mark. We have TOO MUCH candy. Please tell Elle and Hans your request. Dr. Russell has already put dibs on the Snickers, and Dr. Rainusso the Nestle Crunch. I'll have to break it to him that it looks like no one was passing those out though:) Thanks, Ginger, for taking this picture and getting it to me ASAP!
Tuesday, October 30, 2007
A few pictures
A few pictures, from Oktoberfest at church saturday with Carmen, Jim, Ryan, Michael, Ginger, Adrian and Morgan, Elle and me. Elle and Ryan participated in the banana split eating contest and Michael won the costume contest! (Kevin and Hans stayed home.) And then a couple at the park and then Carlie's Fundraiser at Dosey Doe's Restaurant with Carmen's mom, Monte, too. Kev was there - we just didn't catch him on film!
No news on the bone marrow yet - hopefully it'll be good news when we get it. Hans just started round three of Accutane yesterday at an increased dose of 50% more. Hopefully that'll be okay for him. Accutane is pretty rough on him, and it's hard for us to see him on it! Thankfully, after this round we're halfway through it!
For Halloween, Hans is going to be Buzz Lightyear and Elle will be Elizabeth Swan (from Pirates of the Carribean).
Our camera pooped out on us, so we're begging and borrowing photos from friends for now! Thanks Carmen for these, and I think Michelle will send some along from Saturday, too!
Lara
Subscribe to:
Posts (Atom)