Happy Thanksgiving Weekend.
We sure realize how much we've got to be thankful for. Yesterday we enjoyed our least-medical thanksgiving of the past four. Our biggest thanks is that all four of us are here! It was a peaceful and relaxing day. We cooked and ate enough food to enjoy for a week. Kevin is getting good at cooking the "turkey dog", as Hans likes to call it.
My mom flies in today to help us out with Elle while we travel to Philly for scans.
We'll all get to spend a few days together on either end of her visit. She'll spend most of her time taxiing Elle to and from her various events, but they'll squeeze in some fun, too. I think we'll go to the tree farm tomorrow and if we are up for an adventure on Sunday, we'll hit the zoo. Hans would love to turn this place into a zoo... He's always telling us that we need to get a panda, plant some bamboo, and get a giraffe to keep the pine needles off the roof, and get a pool, to a put a dolphin in so that Hans can hang onto it and swim... oh, and an elephant to clean the hot tub with his trunk. I'm sure it wouldn't be legal, but pretty fun. But, I've got my hands full enough with two kids, three cats and a dog;)
Take it easy. Don't spend too much money out there! I know I'm getting into the holiday spending mood, for sure.
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.
Friday, November 27, 2009
Monday, November 23, 2009
For Fun
Here are a couple of pics for a joyously 'normal' weekend...I could get used to this! Hans complained VERY little about his arm and is doing pretty well...
Elle and Hans...ahhh how sweet! I've been try to catch a good pic for the Christmas Card - that's a great yearly challenge!
Here's Elle at New Moon Friday Night (We didn't go at Midnight on Thursday like a couple of crazy moms/girls we know!) It was better than the first movie, I thought.
I think we'll have to keep trying to get a good photo!
Congratulations to our friend Alex who hit his 5 year anniversary of Diagnosis:NB and is now celebrating Long Term Survivorship. Way to thrive, little bro! He had a blow out of a party with the best balloon animal guy I've ever seen, but, alas, I forgot my camera.
I enjoyed beading yesterday with a dozen or so ladies in Katy. Thanks to Katie, Carlie's Aunt for hosting a great workshop.
We were rained out for soccer this weekend, so I have no update to share there.
Hans has managed to chalk up a few more days "present" at school. Tomorrow we have a meeting to make arrangements for all of his "special needs" at school, i.e. Intermittent Homebound, etc. etc.
Lara
Elle and Hans...ahhh how sweet! I've been try to catch a good pic for the Christmas Card - that's a great yearly challenge! Here's Elle at New Moon Friday Night (We didn't go at Midnight on Thursday like a couple of crazy moms/girls we know!) It was better than the first movie, I thought. I think we'll have to keep trying to get a good photo!Congratulations to our friend Alex who hit his 5 year anniversary of Diagnosis:NB and is now celebrating Long Term Survivorship. Way to thrive, little bro! He had a blow out of a party with the best balloon animal guy I've ever seen, but, alas, I forgot my camera.
I enjoyed beading yesterday with a dozen or so ladies in Katy. Thanks to Katie, Carlie's Aunt for hosting a great workshop.
We were rained out for soccer this weekend, so I have no update to share there.
Hans has managed to chalk up a few more days "present" at school. Tomorrow we have a meeting to make arrangements for all of his "special needs" at school, i.e. Intermittent Homebound, etc. etc.
Lara
Friday, November 20, 2009
Hans' Arm - Recap
We've been throwing out so much information over the past 4 - 5 weeks, that I thought I'd do a little recap for you, for where we stand now.
A month ago Hans had such bad pain in his arm, the upper right humerus, and site of original relapse of 5/08, that we were admitted to the hospital for pain control for a week. Many tests were run. Some were negative for NB, some were suspicious but Inconclusive:
The Xray, the MRI and the Bone Scan each showed some abnormalities to the bone. The official MRI report did read "concerning for recurrence", However, the fact is that Hans sustained trauma to that arm at relapse. It was then radiated, and there are no post-treatment images of the area to compare against. We then got news from the CHOP team that the MRI looked like "treated tumor, not active tumor.
The MIBG, CT Scans, Needle Biopsy, and Urine Catecholamines were all negative for evidence of NB. Furthermore, clinically, Hans' arm pain improved.
We thought the option of an open bone biopsy was too risky for Hans, so for now we've held off on that diagnostic bit of evidence. Instead, we opted to do a wait-and-watch approach. We put Hans back on the ABT751, the oral chemo he has been on since February of 2009, after he once again became NED. The idea here is that a follow up MRI will be diagnostic for relapse. IF the MRI is unchanged or improved, we will assume this is not relapse. IF the MRI is worse or shows progressive concern, we will assume it is relapsed NB. The idea is that if Hans has relapsed on ABT 751 that he has become resistant to it, thus, being the aggressive and nasty cancer that it is, it would progress after another round of that same drug and six weeks time.
The thing is, if it is not NB, we are no closer to determining what it is or was! We may wish to reconsider the open biopsy at that point, or hear CHOP out for other options.
I hope this helps! It has been a roller coaster. Hans was going along fine and woke up screaming and crying in pain at midnight a month ago. Now appears to be fine. He dances around the house using crazy flailing windmill moves with both arms. We have never had to withstand such a long diagnostic process. I hardly know what to do with myself. I feel like I have ADD - I can't focus on anything. But, to tell you the truth, I have a good calm feeling about what the scans will reveal. My only concern is that they say they cannot compare the two scans because they are from two different machines/institutions. YET, each institution assures us it'll be just fine.
I'll keep you posted! We have plane tickets! This always feels like a major accomplishment - - I always feel such pressure in picking just the right flights and dates and times, trying to predict just the right amount of time to be on the ground in Philly. I don't know why it's intense for me, probably b/c it's costly and a big pain to try to change tickets after the fact...
Everyday is an Adventure, Everyday is a gift!
Lara
A month ago Hans had such bad pain in his arm, the upper right humerus, and site of original relapse of 5/08, that we were admitted to the hospital for pain control for a week. Many tests were run. Some were negative for NB, some were suspicious but Inconclusive:
The Xray, the MRI and the Bone Scan each showed some abnormalities to the bone. The official MRI report did read "concerning for recurrence", However, the fact is that Hans sustained trauma to that arm at relapse. It was then radiated, and there are no post-treatment images of the area to compare against. We then got news from the CHOP team that the MRI looked like "treated tumor, not active tumor.
The MIBG, CT Scans, Needle Biopsy, and Urine Catecholamines were all negative for evidence of NB. Furthermore, clinically, Hans' arm pain improved.
We thought the option of an open bone biopsy was too risky for Hans, so for now we've held off on that diagnostic bit of evidence. Instead, we opted to do a wait-and-watch approach. We put Hans back on the ABT751, the oral chemo he has been on since February of 2009, after he once again became NED. The idea here is that a follow up MRI will be diagnostic for relapse. IF the MRI is unchanged or improved, we will assume this is not relapse. IF the MRI is worse or shows progressive concern, we will assume it is relapsed NB. The idea is that if Hans has relapsed on ABT 751 that he has become resistant to it, thus, being the aggressive and nasty cancer that it is, it would progress after another round of that same drug and six weeks time.
The thing is, if it is not NB, we are no closer to determining what it is or was! We may wish to reconsider the open biopsy at that point, or hear CHOP out for other options.
I hope this helps! It has been a roller coaster. Hans was going along fine and woke up screaming and crying in pain at midnight a month ago. Now appears to be fine. He dances around the house using crazy flailing windmill moves with both arms. We have never had to withstand such a long diagnostic process. I hardly know what to do with myself. I feel like I have ADD - I can't focus on anything. But, to tell you the truth, I have a good calm feeling about what the scans will reveal. My only concern is that they say they cannot compare the two scans because they are from two different machines/institutions. YET, each institution assures us it'll be just fine.
I'll keep you posted! We have plane tickets! This always feels like a major accomplishment - - I always feel such pressure in picking just the right flights and dates and times, trying to predict just the right amount of time to be on the ground in Philly. I don't know why it's intense for me, probably b/c it's costly and a big pain to try to change tickets after the fact...
Everyday is an Adventure, Everyday is a gift!
Lara
Thursday, November 19, 2009
Falling into Place
So, things appear to be coming together a little bit.
Yesterday we got a few things squared away. We'll now be pushing our sans up two weeks. We'll be back in Philly for scans on Dec 1/Dec 2. They are going to add an MRI to the agenda. This will give us a perfect 6 week window from the first MRI so we can see if there are any changes. I'm a little worried that comparing scans from two different machines/institutions won't be 'Apples to Apples', but, I sure hope it'll be close enough! We are working out travel arrangements now. Kind of a headache. But, at least we have scan dates!
Oh, and we got an encouraging email from Dr. Maris a few days ago. He had reviewed the original MRI with the Radiologists at CHOP and they thought the findings were consistent with "treated tumor, not active tumor"! We're putting that in the Good News Column. We also got some other good news last week. Most Cancer Centers check and track the urine catecholamines HVA/VMA... They don't follow them at TCH, though, so Kevin and I don't really know how to interpret them for Hans. My understanding is that Dr. R. feels it's a flawed gauge of tumor activity - lots of things (like diet) can make the numbers go up, causing panic among parents. BUT, we did get ours done on order from CHOP his HVA is 8.3, normal is 2.1 to 23! his VMA is 3.3, the lowest it has ever been recorded. But, I guess, it was only 7.8 at diagnosis when he had the Nerf Football sized belly tumor! (normal range 1.7 to 6.5).
Hans started back at school today! I was pleasantly surprised that it wasn't a struggle. I think it helped get him in the spirit to go up to campus yesterday and meet with his new teacher, Ms. Latta. He's rolling with the punches better than I could have hoped. Ms. Latta seems like she'll be just wonderful. He seems ready to be reunited with his classmates.
Thanks to Morgan Klein's Girl Scout Troop for Beading for a Cause yesterday with the Lanyard Project! It's fun to see what the kids come up with. We are staying pretty busy around here. I'm going to another workshop at Carlie's Aunt's on Sunday. I still don't have many stocked up for the next bake sale. I can't hang on to them. We did one at Dana's last Friday - and everybody bought them for teacher gifts!
That's the latest - Today is a good day. Kevin is in Oklahoma for a meeting, but he was able to make it an up-and-back in just one day. That's the way Hans likes it. It's fun to hear him pronounce Oklahoma when he is protesting, "I don't like it when you hop on a plane and go to Oklahoma, just go to work in our town!" I think he's fine as long as he gets to fly home at night.
Yesterday we got a few things squared away. We'll now be pushing our sans up two weeks. We'll be back in Philly for scans on Dec 1/Dec 2. They are going to add an MRI to the agenda. This will give us a perfect 6 week window from the first MRI so we can see if there are any changes. I'm a little worried that comparing scans from two different machines/institutions won't be 'Apples to Apples', but, I sure hope it'll be close enough! We are working out travel arrangements now. Kind of a headache. But, at least we have scan dates!
Oh, and we got an encouraging email from Dr. Maris a few days ago. He had reviewed the original MRI with the Radiologists at CHOP and they thought the findings were consistent with "treated tumor, not active tumor"! We're putting that in the Good News Column. We also got some other good news last week. Most Cancer Centers check and track the urine catecholamines HVA/VMA... They don't follow them at TCH, though, so Kevin and I don't really know how to interpret them for Hans. My understanding is that Dr. R. feels it's a flawed gauge of tumor activity - lots of things (like diet) can make the numbers go up, causing panic among parents. BUT, we did get ours done on order from CHOP his HVA is 8.3, normal is 2.1 to 23! his VMA is 3.3, the lowest it has ever been recorded. But, I guess, it was only 7.8 at diagnosis when he had the Nerf Football sized belly tumor! (normal range 1.7 to 6.5).
Hans started back at school today! I was pleasantly surprised that it wasn't a struggle. I think it helped get him in the spirit to go up to campus yesterday and meet with his new teacher, Ms. Latta. He's rolling with the punches better than I could have hoped. Ms. Latta seems like she'll be just wonderful. He seems ready to be reunited with his classmates.
Thanks to Morgan Klein's Girl Scout Troop for Beading for a Cause yesterday with the Lanyard Project! It's fun to see what the kids come up with. We are staying pretty busy around here. I'm going to another workshop at Carlie's Aunt's on Sunday. I still don't have many stocked up for the next bake sale. I can't hang on to them. We did one at Dana's last Friday - and everybody bought them for teacher gifts!
That's the latest - Today is a good day. Kevin is in Oklahoma for a meeting, but he was able to make it an up-and-back in just one day. That's the way Hans likes it. It's fun to hear him pronounce Oklahoma when he is protesting, "I don't like it when you hop on a plane and go to Oklahoma, just go to work in our town!" I think he's fine as long as he gets to fly home at night.
Tuesday, November 17, 2009
Up in the air...
We had a pretty busy weekend. Elle had a sleepover Friday night and was just a bit groggy on Saturday morning game. Saturday night I helped my friend Vicki celebrated her b'day in style! We had toooo much fun! Thanks, Vicki! Then, Sunday, Elle had another game and Hans made it out to Main Event for Adrian's birthday. I'm glad we were able to squeeze it all in.
We had a wild time - but all in good fun...Brenda, Marlene, Jessica, Dana, Vicki, Me, Carmen, and Angela. Look out, Houston! Ha ha...
Hans is pretty mellow this week. Yesterday we went out to the park and fed some ducks. It was pretty exciting - they were chasing him.
He was having just a touch of arm pain once again over the weekend, so we're asking the docs what we should do now. Thankfully, he is using the arm like normal. He is actually moving and grooving! Kevin and I always feel great relief when we look over and see him using his arm doing his expressive dance moves. I'll have to sneak a video of him one of these days...
Hans and Optimus...
Also, Hans is getting a new teacher this week. Mrs. Nusbaum will be staying home with Mia (who is doing pretty well, I understand!!!) and a new permanent teacher was hired to replace her and started yesterday. I have a meeting with her tomorrow. So, with any luck we'll work on getting Hans back to school on Thursday. Just seems like everything is up in the air. It's sort of hard to operate with everything up in the air - but we're plugging along.
Thanks for checking up on us.
Lara
We had a wild time - but all in good fun...Brenda, Marlene, Jessica, Dana, Vicki, Me, Carmen, and Angela. Look out, Houston! Ha ha...
Hans is pretty mellow this week. Yesterday we went out to the park and fed some ducks. It was pretty exciting - they were chasing him.
He was having just a touch of arm pain once again over the weekend, so we're asking the docs what we should do now. Thankfully, he is using the arm like normal. He is actually moving and grooving! Kevin and I always feel great relief when we look over and see him using his arm doing his expressive dance moves. I'll have to sneak a video of him one of these days...
Hans and Optimus...Also, Hans is getting a new teacher this week. Mrs. Nusbaum will be staying home with Mia (who is doing pretty well, I understand!!!) and a new permanent teacher was hired to replace her and started yesterday. I have a meeting with her tomorrow. So, with any luck we'll work on getting Hans back to school on Thursday. Just seems like everything is up in the air. It's sort of hard to operate with everything up in the air - but we're plugging along.
Thanks for checking up on us.
Lara
Saturday, November 14, 2009
Retraction...
Sorry - As soon as I posted that, there was a rectraction within just two days!
I guess Noah got more cards than he could even handle. So, thanks for your thoughts and efforts!!!
Lara
I guess Noah got more cards than he could even handle. So, thanks for your thoughts and efforts!!!
Lara
Friday, November 13, 2009
Call for Bakers and Volunteers!
Hi -
You've heard me talk about our Texas-Sized bake sales...Well, I wanted to invite everyone out there who wants to get involved in helping raise some $$$ for a cure the old fashioned way - by baking! Love to bake, but don't want to have all those temptations in the house??? I've got the sale for you! Want to roll up your sleeves and come spend a day at Texas Children's Hospital selling for a cure? Let me know!
Friday, December 4th, 2009 Texas Children's Hospital 10 am - 3pm.
What if you're not in the Houston Area? How about just doing a micro-bake sale??? Whip something up and leave it out in the Staff Lounge or Breakroom with a little donation box. Send in the proceeds to:
Children's Neuroblastoma Cancer Foundation
39651 Treasury Center
Chicago, IL 60694-9600
All baked good donations are appreciated! Thank you. Shoot me an email at:
kevinandlara@hotmail.com.
Thanks, Lara
PS - in other news, Hans just finished Round 12 of his ABT751, thank goodness! We are always pleased to get past Day 7. He is doing pretty well. We have a crazy weekend of one lanyard workshop, two soccer games and 3 birthday parties to attend.
You've heard me talk about our Texas-Sized bake sales...Well, I wanted to invite everyone out there who wants to get involved in helping raise some $$$ for a cure the old fashioned way - by baking! Love to bake, but don't want to have all those temptations in the house??? I've got the sale for you! Want to roll up your sleeves and come spend a day at Texas Children's Hospital selling for a cure? Let me know!
Friday, December 4th, 2009 Texas Children's Hospital 10 am - 3pm.
What if you're not in the Houston Area? How about just doing a micro-bake sale??? Whip something up and leave it out in the Staff Lounge or Breakroom with a little donation box. Send in the proceeds to:
Children's Neuroblastoma Cancer Foundation
39651 Treasury Center
Chicago, IL 60694-9600
All baked good donations are appreciated! Thank you. Shoot me an email at:
kevinandlara@hotmail.com.
Thanks, Lara
PS - in other news, Hans just finished Round 12 of his ABT751, thank goodness! We are always pleased to get past Day 7. He is doing pretty well. We have a crazy weekend of one lanyard workshop, two soccer games and 3 birthday parties to attend.
Wednesday, November 11, 2009
Something Sweet We Can All Do...
I just became aware of a little boy named Noah who is likely losing his cancer fight in the near future. His request is to receive many many early Christmas Cards. It's such a sweet and simple request, I'm sure we can help to make that happen. If you wish, just drop a Christmas Card in the mail to:
Noah Biorkman
1141 Fountain View Circle
South Lyon, MI 48178
Here's a weblink to a site that tells a little more about the story.
Copy/paste, sorry:
http://www.mlive.com/news/detroit/index.ssf/2009/11/thousands_send_early_christmas.html
I'm sure putting this up on our blog will get a few more cards in the mail...Maybe even 20 or so from a third grade class in NM?
Hans is doing okay. Right now we are on alert - watching for clues that Hans is possibly suffering from what Elle had over the weekend...does it never end??? Ugh, So now we are keeping an even closer eye on him. Thanks to my brother, Tom, who got him an early Christmas gift of the newest Optimus Prime - he is busy today popping and slapping and transforming that guy into a semi. Fun, fun, fun! The gorgeous weather here has been getting Hans and I out and about to a new park each day - I can watch how he uses that arm. Looks good! He also is writing and coloring okay...
Lara
Noah Biorkman
1141 Fountain View Circle
South Lyon, MI 48178
Here's a weblink to a site that tells a little more about the story.
Copy/paste, sorry:
http://www.mlive.com/news/detroit/index.ssf/2009/11/thousands_send_early_christmas.html
I'm sure putting this up on our blog will get a few more cards in the mail...Maybe even 20 or so from a third grade class in NM?
Hans is doing okay. Right now we are on alert - watching for clues that Hans is possibly suffering from what Elle had over the weekend...does it never end??? Ugh, So now we are keeping an even closer eye on him. Thanks to my brother, Tom, who got him an early Christmas gift of the newest Optimus Prime - he is busy today popping and slapping and transforming that guy into a semi. Fun, fun, fun! The gorgeous weather here has been getting Hans and I out and about to a new park each day - I can watch how he uses that arm. Looks good! He also is writing and coloring okay...
Lara
Monday, November 09, 2009
Weekend Update
For the first time in a while I have the luxury of giving you more of a normal update than a medical update. We are now on Day 4 of our oral chemo, and it seems to be going along pretty well. So far Hans is just a little bit moodier than usual, but not really too bad.
I've got both kids home today! Elle had a big start to the weekend. We had a fun mommy/daughter shopping spree on Friday night to get a handful of random things we needed. Then, Saturday am she and I set off to Athena's for the CNCF garage sale. It was on a smaller scale this Fall - I didn't even notify too many of my pals that it was coming up. So, we did $500. Not a record, but not too shabby...it's all for the good cause of funding research on NB. Then, in the afternoon we had a nail-biter of a game. Elle played Goalie the whole first half. Our defenders had to work way too hard and she didn't let one goal in! I was amazed by her. For some reason I just can't get over her being such a strong goalie! We held off this strong team, but lost by one, by a very unfortunate, accidental, own-goal on a penalty kick:( Then, by the time we got home from the game Saturday - she was DONE! She has some cold or something. She didn't really move from the couch all day Sunday. I hope it's not a flu. She's starting to look better, but we figured we'd keep her home from school today, and home from soccer tomorrow and she might be back to normal???
Kevin and I were able to get a couple of little house/yard projects done, which always feels like such a luxury after operating on 'hospital mode' for a while. Since Hans' arm is doing better - we are starting to let him resume a few of his normal activities. We just feel we can't let him ride his bike. A fall could really break it. Dr. Russell has explained to us that if he fractures it in the condition it's in, it may never heal. I guess they can't pin it the way it is. That's why it was so scary to go ahead with the open biopsy... there was a significant risk of fracture. We thought - if we aren't supposed to let him break it, we shouldn't let the surgeon break it either...
We are going to wait and see about school next week. We want to observe his arm while he's finishing this round of chemo and debate the school issue next week. School is so fabulous for him, and he loves it once he is up there. But, ever since diagnosis, he is pretty content to hang out at home! I don't think he's too troubled by the missed days.
I've got both kids home today! Elle had a big start to the weekend. We had a fun mommy/daughter shopping spree on Friday night to get a handful of random things we needed. Then, Saturday am she and I set off to Athena's for the CNCF garage sale. It was on a smaller scale this Fall - I didn't even notify too many of my pals that it was coming up. So, we did $500. Not a record, but not too shabby...it's all for the good cause of funding research on NB. Then, in the afternoon we had a nail-biter of a game. Elle played Goalie the whole first half. Our defenders had to work way too hard and she didn't let one goal in! I was amazed by her. For some reason I just can't get over her being such a strong goalie! We held off this strong team, but lost by one, by a very unfortunate, accidental, own-goal on a penalty kick:( Then, by the time we got home from the game Saturday - she was DONE! She has some cold or something. She didn't really move from the couch all day Sunday. I hope it's not a flu. She's starting to look better, but we figured we'd keep her home from school today, and home from soccer tomorrow and she might be back to normal???
Kevin and I were able to get a couple of little house/yard projects done, which always feels like such a luxury after operating on 'hospital mode' for a while. Since Hans' arm is doing better - we are starting to let him resume a few of his normal activities. We just feel we can't let him ride his bike. A fall could really break it. Dr. Russell has explained to us that if he fractures it in the condition it's in, it may never heal. I guess they can't pin it the way it is. That's why it was so scary to go ahead with the open biopsy... there was a significant risk of fracture. We thought - if we aren't supposed to let him break it, we shouldn't let the surgeon break it either...
We are going to wait and see about school next week. We want to observe his arm while he's finishing this round of chemo and debate the school issue next week. School is so fabulous for him, and he loves it once he is up there. But, ever since diagnosis, he is pretty content to hang out at home! I don't think he's too troubled by the missed days.
Friday, November 06, 2009
Start Round 12
Today's counts looked "gorgeous". Hans just started Round 12 of ABT751.
Gotta run, but just wanted to let you know!
Gotta run, but just wanted to let you know!
Thursday, November 05, 2009
Tentative New Plan
Here are Hans' Picture Day Pics - Kindergarten Fall 2009, Age 6
His smile isn't super big - but I won't be takin' a gamble on retake day. I think they're great! If you click on the picture you can see it better and you can really see the pretty color of his eyes!
So - we have a rough new plan:
Recheck counts tomorrow (Hans' liver panel was a bit High last week, and it needs to be rechecked before he can do the next step. If that rings a bell, it was high back in February 2009 when Rotovirus really wiped him out!)
If he clears counts check, he'll go back on ABT 751 for a Round or Two, and then his next scans at CHOP will be pushed up just a little bit.
If his liver panel is still high, we don't have a plan! We'll be back to winging it.
While it is wonderful to have two competent Oncology Teams reviewing your child's case - I do think it introduces some Gridlock. It takes longer for info to be shared and to get answers. This has been about the longest diagnostic process we have been through - and we are just sort of moving on for the moment. Pretty scary big decisions that we are making. It's a little intense, so it's been hard for me to focus on anything else. The good news: Hans' arm is pretty great. We think it still bothers him a bit, but we think it's much better. We are now only giving him one pain pill at night.
We are enjoying some gorgeous weather here in TX. Nice break from heat, heat, heat!
Lara
Tuesday, November 03, 2009
Change of Plans
Well, we arrived at TCH with an apt for a biopsy and some lingering questions. The outcome was an impromptu team meeting and the current decision to postpone the Open Bone Biopsy. I know - that is a surprise! We had hoped to get some questions illuminated, and I guess our questions didn't necessarily "have" answers... We were also hoping for a greater confidence that the surgeon could go in and get what he needed while doing minimal damage. I guess we were under the impression that they only needed a very small sample, but the surgeon indicated needing a much larger (dime sized!) core sample...
Our next step is to see whether we are cleared to start back up with Round 12 of ABT 751 and go from there (like do a wait/watch with another round of MRI and Bone Scans in a little while...) Waiting for a response. In the mean time, Hans' arm has continued to show marked improvement. However, we have been instructed to keep Hans home from school, and to ensure that he does not injure it. That is, for the time being. We are trying to push through the process of getting Hans set up with Home bound instruction. But, everything is such a process... We are, I think, pretty bummed and confused. We feel no closer to the truth or an action plan to make Hans better. No closer to knowing if it is NB, some other thing, or what! We just in our hearts couldn't put him through a procedure that could hurt him. The docs left it up to us, so we made the best decision we could at the time.
Our next step is to see whether we are cleared to start back up with Round 12 of ABT 751 and go from there (like do a wait/watch with another round of MRI and Bone Scans in a little while...) Waiting for a response. In the mean time, Hans' arm has continued to show marked improvement. However, we have been instructed to keep Hans home from school, and to ensure that he does not injure it. That is, for the time being. We are trying to push through the process of getting Hans set up with Home bound instruction. But, everything is such a process... We are, I think, pretty bummed and confused. We feel no closer to the truth or an action plan to make Hans better. No closer to knowing if it is NB, some other thing, or what! We just in our hearts couldn't put him through a procedure that could hurt him. The docs left it up to us, so we made the best decision we could at the time.
Open Biopsy Today
Oh, gosh, I don't think I've even written to let you know the big open biopsy is today. I'm a little nervous about this one for some reason. I guess we have never had to have anything like this done. We are just trying to get through all of this one step at a time, but to be honest, it hasn't been very fun. Hope our little guy gets through it with minimal trauma, hope they find something ultimately treatable.
Thanks for any prayers, thoughts or good vibe you can send his way. His procedure is scheduled for noon Central Time.
Love, Lara
Thanks for any prayers, thoughts or good vibe you can send his way. His procedure is scheduled for noon Central Time.
Love, Lara
Sunday, November 01, 2009
More Pictures
This is Hans Friday Night as Bumblebee... He doesn't like his picture taken at all anymore - what a pain! he doth protest! He had fun Friday night, but that was all the fun he needed - he stayed in and let Elle and her buddy shane do all the trick or treatin' Saturday night!
Shane and Elle
Elle, Morgan and Adrian Hans' head in forefront...
Kira, Clay, Joey, Cole, Ryan, Hans, Michael, Elle
Subscribe to:
Posts (Atom)