Hi -
Just a quick post to let everyone know what we've decided to do - we have started another round of Irino/Temodor. We are still waiting for the docs to get on the same page regarding Hans' scans. I guess they must really be on the ambiguous side. Dr. Russell sent them out to Michigan for a (3rd?) opinion. They do the MIBG up there too. So - at least he should be well considered.
The chemo is going fine. It took us quite a while to get started yesterday, but the rest of the week should go fairly quickly. I missed Erin and Patrick up at clinic yesterday since we had to start so late, but I think they're both doing okay. (More prayers for shrinkage for both, on their new therapies!) I did get to see our new friend, baby Michael, and I hope the poor little dude finally got a room!
Got some fundraiser things cooking:
Garage Sale in Spring: 4726 Rivertree Lane - Sat Nov 1st... If you want to come shop, or have things for sale. Sorry not to give you much notice, but I've been meaning to post this for a while. You could drop your things off with me. We are also going to have a second sale in College Station on the 8th...
Also - The Memorial Bake Sale has been rescheduled for Dec. 5th.
We have even booked the bridge for the Valentines Day Bake Sale - Feb 13th, 2009! If you are considering having a Valentines Day Bake Sale in your neck of the woods, you may be able to go ahead and reserve the space now. I know at TCH they won't let you reserve the spot more than 4 months out... Hint hint - these go REALLY WELL at children's hospitals, probably any hospitals. I have a tip sheet on starting a bake sale, and one for giving your volunteer bakers - you can email me at kevinandlara@hotmail.com and I'll send them to you!
I'm also working on my annual little Lunch for Life appeal post/email, but Kevin has sent me back for some fact-checking! So - I'll have it up in a few days. You know that we sure do appreciate your support.
Lara
PS - We had our insurance adjuster out yesterday! He turned out to be quite a nice and reasonable guy. We're still waiting on his final quote - but I think I might be able to live with it.
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.
Wednesday, October 29, 2008
Friday, October 24, 2008
Still sort of playing the waiting game...
Genna, Sydney, and Elle modeling some of Elle's lanyards
Mrs. McGraw (Elle's music and choir teacher) and Mrs. Hertzenberg (Elle's principal)with Elle, sporting their new lanyards
Hans, finger painting at home this week. My sneaky trick to get him into the bath!
So, wow, I wouldn't have thought that a week later we'd still officially be playing the waiting game. But - such is life! TCH Fed Ex'd the scans to Dr. Maris at CHOP, but they didn't make it into his hands before he had to leave for COG (Children's Oncology Group meeting this week in Denver, where he'll meet up with Dr. Russell and all of the other NB docs). So we don't have his official recommendation re: the MIBG therapy. So, as it stands right now, we are most likely going to start up Hans on another round of Irinotecan/Temodor Monday - unless Dr. Maris contacts us sooner than Monday at 10:45 am.... ARGH! But, this extra week off (although terrifying) has been ultimately relaxing - allowing us a chance to catch up and take a breath. We usually won't allow Hans to sit around for extra days off treatment - but that, I guess, is the drawback of having multiple centers looking at your kid. The waiting time somehow increases exponentially as it is tricky for these docs to share information and put their heads together. However, since Hans' scans are somewhat ambiguous at this point, we are extremely pleased that there will be multiple sets of trained eyes on them. Hopefully the medical advice we get won't be so contrasting that we're making a stretch to come up with the 'best' decision...
If MIBG is not indicated at this time - we will try to arrange a consult with the folks up at Memorial Sloan Kettering (MSKCC) in NYC, and possibly another team in Vermont! I am having a very tough time fighting the urge to stay away from the shops to update my winter wardrobe. Luckily I found a 20% off Macy's coupon in the paper today;) And I found some cute fleece pants for Hans from Old Navy. He won't wear denim. I think it's because he was in such pain with his large belly tumor upon diagnosis, that he has a strong neg. association with snug-fitting clothes - hence, his preference for his jammies. I'm going to go back and stock up on these fleece pants in every color to be ready for whatever consult we need to go on...
We are floating along nicely this week - sort of in a bubble of protection from the good news on the scans. When you're relapsed NB, though, you're always wondering how temporary your foothold on safety might be. We're trying to find the most proactive next-move, but it's a tough call...
Thanks for checking up on us, and have a groovy weekend!
Lara
Mrs. McGraw (Elle's music and choir teacher) and Mrs. Hertzenberg (Elle's principal)with Elle, sporting their new lanyards
Hans, finger painting at home this week. My sneaky trick to get him into the bath!
So, wow, I wouldn't have thought that a week later we'd still officially be playing the waiting game. But - such is life! TCH Fed Ex'd the scans to Dr. Maris at CHOP, but they didn't make it into his hands before he had to leave for COG (Children's Oncology Group meeting this week in Denver, where he'll meet up with Dr. Russell and all of the other NB docs). So we don't have his official recommendation re: the MIBG therapy. So, as it stands right now, we are most likely going to start up Hans on another round of Irinotecan/Temodor Monday - unless Dr. Maris contacts us sooner than Monday at 10:45 am.... ARGH! But, this extra week off (although terrifying) has been ultimately relaxing - allowing us a chance to catch up and take a breath. We usually won't allow Hans to sit around for extra days off treatment - but that, I guess, is the drawback of having multiple centers looking at your kid. The waiting time somehow increases exponentially as it is tricky for these docs to share information and put their heads together. However, since Hans' scans are somewhat ambiguous at this point, we are extremely pleased that there will be multiple sets of trained eyes on them. Hopefully the medical advice we get won't be so contrasting that we're making a stretch to come up with the 'best' decision...
If MIBG is not indicated at this time - we will try to arrange a consult with the folks up at Memorial Sloan Kettering (MSKCC) in NYC, and possibly another team in Vermont! I am having a very tough time fighting the urge to stay away from the shops to update my winter wardrobe. Luckily I found a 20% off Macy's coupon in the paper today;) And I found some cute fleece pants for Hans from Old Navy. He won't wear denim. I think it's because he was in such pain with his large belly tumor upon diagnosis, that he has a strong neg. association with snug-fitting clothes - hence, his preference for his jammies. I'm going to go back and stock up on these fleece pants in every color to be ready for whatever consult we need to go on...
We are floating along nicely this week - sort of in a bubble of protection from the good news on the scans. When you're relapsed NB, though, you're always wondering how temporary your foothold on safety might be. We're trying to find the most proactive next-move, but it's a tough call...
Thanks for checking up on us, and have a groovy weekend!
Lara
Tuesday, October 21, 2008
Marrow Clean!
Hey - we got some super news last night that Hans' Bone Marrow is clean.
Halleluia! I'm so pleased. Dr. Shohet gave us the call last night and said,
"this is really good, I am really pleased with Hans right now."
So are we! I was happy to see that he was up for a little adventure by going to check out our dinosaur museum again yesterday. It's been a while since we made it up there.
Kevin is doing really pretty well. He went into work all last week, and I don't think the driving has been that bad on him.
We're just waiting for Dr. Maris to give his 2 cents and we'll see the next step...
Lara
Halleluia! I'm so pleased. Dr. Shohet gave us the call last night and said,
"this is really good, I am really pleased with Hans right now."
So are we! I was happy to see that he was up for a little adventure by going to check out our dinosaur museum again yesterday. It's been a while since we made it up there.
Kevin is doing really pretty well. He went into work all last week, and I don't think the driving has been that bad on him.
We're just waiting for Dr. Maris to give his 2 cents and we'll see the next step...
Lara
Monday, October 20, 2008
Slight Improvement
Hey - we got word yesterday that the MIBG scan showed slight improvement in the small spot on the liver, and that the left arm - humerus (we had previously thought it was leg, but it was arm) is unchanged!!! Let me just rejoice for a minute here!!! This is great since it is not spreading, not progression! JOY! Kevin and I were a little concerned when Hans said his back hurt a little bit last weekend. But I really didn't want to put my fears out there on the blog... Spine was clear!
This leaves us waiting on decisions before we get the next step. We need to get the scans to Dr. Maris at CHOP and he needs to evaluate them so he can decide if Hans is eligible for MIBG therapy. My logic speculates that if Maris sees improvement on scans he thought already looked good, that he wouldn't consider MIBG an option for Hans at this time. We can always keep up the Irino/Temodor for a while. The good thing about this therapy is that it is fairly do-able! We only have 5 short clinic days and then 2 full weeks off, Hans' counts don't drop too low, and the overall quality of life is pretty great. I do notice that he is losing a tiny bit of weight and his moodiness is a little bit more unpredictable. But, he doesn't have any physical complaints.
Kevin and I feel like we're in a pretty good place to take a breath and consider our options. Waiting for Maris, waiting for the Bone Marrow to come back (Weds, Thurs...?)
That's all we know right now. The pressure is sort of on though. If we are doing more Irino/Temodor, the schedule dictates we should start TODAY. That's not going to happen, since the scans can't get to Maris until tomorrow, and I have no idea when his schedule will allow him to review them and make a rcommendation. Kevin and I get extremely nervous when start dates get pushed back. I guess we look at it like - that's the only thing we have control of - keeping on track...
Thanks for checking up on us - I'm going to go play Wii with Hansie...
Lara
This leaves us waiting on decisions before we get the next step. We need to get the scans to Dr. Maris at CHOP and he needs to evaluate them so he can decide if Hans is eligible for MIBG therapy. My logic speculates that if Maris sees improvement on scans he thought already looked good, that he wouldn't consider MIBG an option for Hans at this time. We can always keep up the Irino/Temodor for a while. The good thing about this therapy is that it is fairly do-able! We only have 5 short clinic days and then 2 full weeks off, Hans' counts don't drop too low, and the overall quality of life is pretty great. I do notice that he is losing a tiny bit of weight and his moodiness is a little bit more unpredictable. But, he doesn't have any physical complaints.
Kevin and I feel like we're in a pretty good place to take a breath and consider our options. Waiting for Maris, waiting for the Bone Marrow to come back (Weds, Thurs...?)
That's all we know right now. The pressure is sort of on though. If we are doing more Irino/Temodor, the schedule dictates we should start TODAY. That's not going to happen, since the scans can't get to Maris until tomorrow, and I have no idea when his schedule will allow him to review them and make a rcommendation. Kevin and I get extremely nervous when start dates get pushed back. I guess we look at it like - that's the only thing we have control of - keeping on track...
Thanks for checking up on us - I'm going to go play Wii with Hansie...
Lara
Friday, October 17, 2008
waiting game
Hans and our neighbor Zach had a little photo session yesterday...
Hi - we'll post when we know but for right now we're just playing the waiting game.
We now have one more round of scans under our belt. We only did the Marrow and the MIBG. The docs didn't think we needed a Bone Scan or a CT.
So there's really no news. Elle has been working diligently on her orders from school and we've even come up with a Lanyard Project order form and a new email address for orders: lanyardproject@live.com. The project is going really well!
Elle has some other big news... She made the cut for her school's district wide fun-run. She just missed the cut last year and this was her major goal for the year. She's enjoying some of the priveledges of being a 4th grader, the seniors of her campus. She signed up for choir on Thursdays after school, and she is a 'gator gaurd' this week and next week. (The big kids that get to school early to open the doors for kids getting dropped off at school...) We've been a little slow with her Bluebonnet Reading this year, but we're working on it - you can see the Texas Bluebonnet award winning booklist here: http://www.txla.org/groups/tba/nominees.html
In other news, that's not nearly as exciting. We've kind of changed our plans for Hans' school year. It has been pretty tough for him, with all the ups and downs of treatment, and the hurricane, and, I think, mostly the inability to get into a routine... We've talked with the principal, our staff at TCH, the teacher, and we're sort of following Hans' lead and deciding to wait until next year to give Kinder a start. It may sound a little crazy - but it was just a major battle to drag him out of bed on the days he was suddenly, unexpectedly supposed to be going to school. He loved it once he got up there, and we couldn't have loved his teachers and the staff any better. But, essentially, it was a little much. So - we'll try again next year! Crossing our fingers and hoping for the best. The whole thing makes me feel a little flaky - but I think it all boils down to Hans being a little sensitive and fragile, and if we can conserve his energy and let him do what he wants this year, we'll start him up next year. I guess we all just do the best we can, huh?
Okay - I'll post again after we have scan results.
Lara
PS - Erin got stable results. We were hoping for shrinkage... but at least there was no more progression...
Hi - we'll post when we know but for right now we're just playing the waiting game.
We now have one more round of scans under our belt. We only did the Marrow and the MIBG. The docs didn't think we needed a Bone Scan or a CT.
So there's really no news. Elle has been working diligently on her orders from school and we've even come up with a Lanyard Project order form and a new email address for orders: lanyardproject@live.com. The project is going really well!
Elle has some other big news... She made the cut for her school's district wide fun-run. She just missed the cut last year and this was her major goal for the year. She's enjoying some of the priveledges of being a 4th grader, the seniors of her campus. She signed up for choir on Thursdays after school, and she is a 'gator gaurd' this week and next week. (The big kids that get to school early to open the doors for kids getting dropped off at school...) We've been a little slow with her Bluebonnet Reading this year, but we're working on it - you can see the Texas Bluebonnet award winning booklist here: http://www.txla.org/groups/tba/nominees.html
In other news, that's not nearly as exciting. We've kind of changed our plans for Hans' school year. It has been pretty tough for him, with all the ups and downs of treatment, and the hurricane, and, I think, mostly the inability to get into a routine... We've talked with the principal, our staff at TCH, the teacher, and we're sort of following Hans' lead and deciding to wait until next year to give Kinder a start. It may sound a little crazy - but it was just a major battle to drag him out of bed on the days he was suddenly, unexpectedly supposed to be going to school. He loved it once he got up there, and we couldn't have loved his teachers and the staff any better. But, essentially, it was a little much. So - we'll try again next year! Crossing our fingers and hoping for the best. The whole thing makes me feel a little flaky - but I think it all boils down to Hans being a little sensitive and fragile, and if we can conserve his energy and let him do what he wants this year, we'll start him up next year. I guess we all just do the best we can, huh?
Okay - I'll post again after we have scan results.
Lara
PS - Erin got stable results. We were hoping for shrinkage... but at least there was no more progression...
Tuesday, October 14, 2008
This Week...
Hi,
Sorry to those of you who have left messages on our machine - we just cleared the VM so now I'll try to stay on top of calls a little better. I've been sort of treading water. I finally got the 6th and final TRUCK LOAD of hurricane IKE debris cleared from the yard this weekend and the insurance adjuster is supposed to come by this morning. I hope that it goes well!!! For those of you in The Woodlands who didn't know - the Budde Road recycling center has an excellent free service - just bring any yard waste or other wreckage and they unload it for you for free! BTW Kevin has gotten to feel progressively better each day and is giving it a shot and going into work today. We've heard that driving after surgery can be the hardest part. Too bad he's got a tough commute and drives a stick...
We have one more day off before two days of scans and then results. Thanks for your prayers! Not just for Hans, but there are always others... it's been a while since I mentioned our little TCH friends, but our 6th grade friend Erin is doing all of her scans today. Patrick had some progression at last scans and is doing a change up in therapy. Colby is stable and will soon get his port removed! There are a couple of TCH kiddos that remain stable and in NED - Alex, Will, Roman, John T. and Layla to name a few...there are also a couple of new faces - little Michael, and I think a couple I haven't even met!
On another note - our lanyard project is going pretty well. Thanks to all the GLEN LOCH teachers and staff for their orders. We're coming along with them slowly but surely. We've come up with some pretty cute ways to do school colors. E's GS troop took some down time on their camping trip this weekend to do lanyards as a service project. They turned out cute. I set up Ms. Neimeyer's troop with some red and green school colors lanyards too - can't wait to see how they turn out! Let me know if you have an order - we can make it in the colors you want - school colors for teacher gifts, whatever... kevinandlara@hotmail.com... $15 ea.. Elle and I bought some leather and large (masculine-type)beads and we are trying to work up a 'dude lanyard' prototype...probably more for the 'free spirit' dudes out there needing to wear a work ID badge... Remember, proceeds go to NB research through the newly founded Houston chapter of the Children's Neuroblastoma Cancer Foundation.
Will update as we get through scans...
Lara
Sorry to those of you who have left messages on our machine - we just cleared the VM so now I'll try to stay on top of calls a little better. I've been sort of treading water. I finally got the 6th and final TRUCK LOAD of hurricane IKE debris cleared from the yard this weekend and the insurance adjuster is supposed to come by this morning. I hope that it goes well!!! For those of you in The Woodlands who didn't know - the Budde Road recycling center has an excellent free service - just bring any yard waste or other wreckage and they unload it for you for free! BTW Kevin has gotten to feel progressively better each day and is giving it a shot and going into work today. We've heard that driving after surgery can be the hardest part. Too bad he's got a tough commute and drives a stick...
We have one more day off before two days of scans and then results. Thanks for your prayers! Not just for Hans, but there are always others... it's been a while since I mentioned our little TCH friends, but our 6th grade friend Erin is doing all of her scans today. Patrick had some progression at last scans and is doing a change up in therapy. Colby is stable and will soon get his port removed! There are a couple of TCH kiddos that remain stable and in NED - Alex, Will, Roman, John T. and Layla to name a few...there are also a couple of new faces - little Michael, and I think a couple I haven't even met!
On another note - our lanyard project is going pretty well. Thanks to all the GLEN LOCH teachers and staff for their orders. We're coming along with them slowly but surely. We've come up with some pretty cute ways to do school colors. E's GS troop took some down time on their camping trip this weekend to do lanyards as a service project. They turned out cute. I set up Ms. Neimeyer's troop with some red and green school colors lanyards too - can't wait to see how they turn out! Let me know if you have an order - we can make it in the colors you want - school colors for teacher gifts, whatever... kevinandlara@hotmail.com... $15 ea.. Elle and I bought some leather and large (masculine-type)beads and we are trying to work up a 'dude lanyard' prototype...probably more for the 'free spirit' dudes out there needing to wear a work ID badge... Remember, proceeds go to NB research through the newly founded Houston chapter of the Children's Neuroblastoma Cancer Foundation.
Will update as we get through scans...
Lara
Saturday, October 11, 2008
I guess it's not all black and white...
There was another piece of the consult in Philapelphia that sort of threw me for a loop. It has taken me a couple of days to post about it - while I wrap my mind around it. At some point in the conversation, Dr. Maris said - 'I don't see anything on the last scans.' What? Okay. I said, 'you mean Neuroblastoma?' He confirmed. However, he did explain that when you are looking at a scan saved on a disc, you can't manipulate it - adjust the contrast - zoom in to questionable areas, etc. I remembered our last scan review appointment, and Dr. Russell said she wouldn't have seen it. But, the radiologists in our Nuc Med department found two areas, so - there definately could have been something there.
Then, for the rest of the consult - it seemed like Dr. Maris spent more time focusing on options we could look at if Hans is NED after scans next week, than he did discussing what to do if his MIBG lights up.
No one knows what the scans will look like until we go through them - but I thought I'd post about all this because now we all have one more reason to pray for those pretty, clean scans.
Life is a trip.
Lara
Then, for the rest of the consult - it seemed like Dr. Maris spent more time focusing on options we could look at if Hans is NED after scans next week, than he did discussing what to do if his MIBG lights up.
No one knows what the scans will look like until we go through them - but I thought I'd post about all this because now we all have one more reason to pray for those pretty, clean scans.
Life is a trip.
Lara
Thursday, October 09, 2008
Back from CHOP!
Hans, entertaining me with air guitar and lip synch at yesterday's lunch at Mad Mex
Hans, playing DS in the Suite - Sweet! Check out the new hair coming in on the irino/temodor;)
Hi guys -
Thanks for your emails, calls and thoughts and prayers. Kevin made it through his umbilical hernia surgery okay (ouch, just in some pain!), and Hans and I made it back from CHOP. I was so stressed about just making it all happen, I hadn't exactly expected to have such a pleasant experience. Hans and I enjoyed checking out a new city. I tried to frame the trip as "hopping on a plane to meet one of Dr. Russell's friends". He wasn't really on board until he got an idea - the morning before we left, he asked, "do they have pancakes up the hotel?" As soon as I replied Yes - he was sold. So - Hans ate his way through Philadelphia. We compliment each other well, since he is a little lion cub carnivore, and I'm more of a semi-vegitarian, or as my friend Josie used to call it a 'chickitarian' - he could order the NY strip steak, and I enjoyed the sides. He ate his first street Hot Dog, and a student in the U. Penn area pointed us in the right direction to chips and salsa when he needed them. The only time Hans had a problem was when we had to push away from the breakfast table (pancakes, ham steak, etc.) to make it to the appointment. He actually cried and screamed through the streets on our short walk to the hospital. Going into a new hospital is always a maze. We were somewhat bewildered trying to find the right elevator to get into the Wood Building when an angel of an employee championed the cause of pushing the stroller while I held a screaming/crying Hans, and she got us to the right spot. It actually has ceased to amaze me now that things happen like that. A stranger will just fall out of the sky and push the stroller for you when you really need it. Thanks to that lady - I told her she was an angel. I hope she didn't get in trouble for being late to work!
As soon as we got into the clinic, as I had hoped and figured, Hans calmed down and got into clinic waiting mode - just playing his DS and waiting it out. The consultation went great. The plan is just to get a look at Hans' scans next week, and get a second bone marrow aspiration done. If there is still activity on the MIBG scan, then we will likely do the MIBG treatment up at CHOP the end of this month. If not, then, that's great news and we have other options to look into...
We have a long list of thank you's to people who helped get us through these past two days - TWO of our neighbors who brought meals last night - Dan and Cindy, and Pam and Rick! Carmen who not only got Kevin to and from the procedure, but filled his prescriptions and picked Hans and I up from the airport, Anne who dropped us off. All those donors who gave us the miles for the flight, the Dillon family (friends of Michelle) who donated Sheraton hotel points. We stayed in a beautiful suite after we found out the Ronald McDonald House was full. And, thanks to our Sparrow Club friend Dodie - who pulled some strings and got us a special announcement on the Plane and a tour of the cockpit. Fun! And thanks to Pati and Tom and my mom's friend Christine who sent us special gifts that made this week a little easier!
Hans, playing DS in the Suite - Sweet! Check out the new hair coming in on the irino/temodor;)
Hi guys -
Thanks for your emails, calls and thoughts and prayers. Kevin made it through his umbilical hernia surgery okay (ouch, just in some pain!), and Hans and I made it back from CHOP. I was so stressed about just making it all happen, I hadn't exactly expected to have such a pleasant experience. Hans and I enjoyed checking out a new city. I tried to frame the trip as "hopping on a plane to meet one of Dr. Russell's friends". He wasn't really on board until he got an idea - the morning before we left, he asked, "do they have pancakes up the hotel?" As soon as I replied Yes - he was sold. So - Hans ate his way through Philadelphia. We compliment each other well, since he is a little lion cub carnivore, and I'm more of a semi-vegitarian, or as my friend Josie used to call it a 'chickitarian' - he could order the NY strip steak, and I enjoyed the sides. He ate his first street Hot Dog, and a student in the U. Penn area pointed us in the right direction to chips and salsa when he needed them. The only time Hans had a problem was when we had to push away from the breakfast table (pancakes, ham steak, etc.) to make it to the appointment. He actually cried and screamed through the streets on our short walk to the hospital. Going into a new hospital is always a maze. We were somewhat bewildered trying to find the right elevator to get into the Wood Building when an angel of an employee championed the cause of pushing the stroller while I held a screaming/crying Hans, and she got us to the right spot. It actually has ceased to amaze me now that things happen like that. A stranger will just fall out of the sky and push the stroller for you when you really need it. Thanks to that lady - I told her she was an angel. I hope she didn't get in trouble for being late to work!
As soon as we got into the clinic, as I had hoped and figured, Hans calmed down and got into clinic waiting mode - just playing his DS and waiting it out. The consultation went great. The plan is just to get a look at Hans' scans next week, and get a second bone marrow aspiration done. If there is still activity on the MIBG scan, then we will likely do the MIBG treatment up at CHOP the end of this month. If not, then, that's great news and we have other options to look into...
We have a long list of thank you's to people who helped get us through these past two days - TWO of our neighbors who brought meals last night - Dan and Cindy, and Pam and Rick! Carmen who not only got Kevin to and from the procedure, but filled his prescriptions and picked Hans and I up from the airport, Anne who dropped us off. All those donors who gave us the miles for the flight, the Dillon family (friends of Michelle) who donated Sheraton hotel points. We stayed in a beautiful suite after we found out the Ronald McDonald House was full. And, thanks to our Sparrow Club friend Dodie - who pulled some strings and got us a special announcement on the Plane and a tour of the cockpit. Fun! And thanks to Pati and Tom and my mom's friend Christine who sent us special gifts that made this week a little easier!
Monday, October 06, 2008
Photojournal link
I think this link is worth checking out (sorry - copy and paste, I guess): http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html
It's a photo journal of some of the brave children fighting the fight against pediatric cancer. I completely missed the opportunity to share with you that September is Pediatric Cancer Awareness month. September '08 was not the best month on the books for us - we're glad to flip the calendar and hope for better.
In a couple of weeks, we'll send around an email and post about this year's Lunch for Life campaign. This will give everyone an opportunity to chip in a little bit to support research efforts. Your support of this cause is very important to us.
For now - it's just business as usual - preparing for a big week with the CHOP consult, and Kevin's surgery. We are grateful to be in your thoughts and prayers.
It's a photo journal of some of the brave children fighting the fight against pediatric cancer. I completely missed the opportunity to share with you that September is Pediatric Cancer Awareness month. September '08 was not the best month on the books for us - we're glad to flip the calendar and hope for better.
In a couple of weeks, we'll send around an email and post about this year's Lunch for Life campaign. This will give everyone an opportunity to chip in a little bit to support research efforts. Your support of this cause is very important to us.
For now - it's just business as usual - preparing for a big week with the CHOP consult, and Kevin's surgery. We are grateful to be in your thoughts and prayers.
Friday, October 03, 2008
We Have Tickets!
Just wanted to post the latest - we have tickets to Philadelphia! Hans and I will fly in Tuesday and fly out Wednesday. It took 100,000 donated miles to fly on such short notice w/o a Saturday stay, but thank goodness we had them. I am looking forward to meeting with Dr. Maris.
Thank you to: The Lounsbury family, and the Malone's, for additional miles donations, as well as our friends The Arangos - they were the first to offer to donate miles!
Hans is on Day 5 of Irino/Temodor today. We'll be celebrating as we are outta there this afternoon! He is doing well - it has just been a little too much to try to do Kindergarten in the AM and then treatment all afternoon. We're looking forward to being back at Glen Loch on Monday before it's off to Philadelphia on Tuesday...
Lara
Thank you to: The Lounsbury family, and the Malone's, for additional miles donations, as well as our friends The Arangos - they were the first to offer to donate miles!
Hans is on Day 5 of Irino/Temodor today. We'll be celebrating as we are outta there this afternoon! He is doing well - it has just been a little too much to try to do Kindergarten in the AM and then treatment all afternoon. We're looking forward to being back at Glen Loch on Monday before it's off to Philadelphia on Tuesday...
Lara
Thursday, October 02, 2008
Thank You!
We got some news about our insurance and Cincinnati this week - we'd be out of network there and that could lead to some very LARGE medical bills. So, as of Tuesday morning it was back to the drawing board. Within 36 hours - we had a new plan - Hans will now be seen for an MIBG consultation in Philadelphia next week, and the rest of the plan will follow along pretty much the same as I had described before. Scans will be 10/14 and 10/15! CHOP (Children's Hospital of Philadelphia) is really top-notch - Dr. Maris, the Doc we'll be seeing up there is world class. He is the one who discovered the genetic component to NB a couple of months ago.
The only new exception is that Kev has to have surgery next week - so he'll likely stay here with Elle and Hans and I will make the trip to Philly. We think he pulled something while he was getting the tree off the roof! It's a hernia, and he's in quite a bit of pain - poor dude! I'm glad he went right in to get it checked out. His surgery is scheduled for Wednesday - same day as Hans' consultation.
I owe thank yous to:
Ellen Shohet at TCH who has worked really hard coordinating us with three hospitals and never complaining when I change my mind!
Michelle Nolen researched a special program called CAREFORCE through Continental that provides flight assistance to families traveling for medical purposes and she sent out an email to a few of our friends and contacts yesterday - and she was able to able to acquire enough donated miles in one day for Hans and one caregiver to make FOUR or FIVE trips for medical treatment or consultation. (The number of miles charged depends on how booked the flight is.) People donated 266,000 miles yesterday! Pretty amazing! If there are other families out there who could benefit from this program, please email me and I'll give you the contact info.
Thank you to: The Marek Family, The Arnett Family, The Garrett Family, The Watthuber Family, The Diket Family, and The Neveu's for their generous donations of miles. With those donations we will be able to travel to Philly for consultation, and treatment. I was beginning to panic about buying tickets on such short notice. The last time I looked, it was going to cost us $1198 per ticket to get to Cincinnati on a week's notice. What a really incredible donation that has helped us out tremendously. Careforce also has a program where they will simply buy you a ticket to travel for medical treatment every 12 months. They waived the transfer fee to donate these miles.
Darren, Alana, and Dave, thanks for helping Elle and I clean up the yard after the disaster crew came through and picked up the two large piles that once was our tree!
Kev wanted to be out there - but his darn hernia...
lara
The only new exception is that Kev has to have surgery next week - so he'll likely stay here with Elle and Hans and I will make the trip to Philly. We think he pulled something while he was getting the tree off the roof! It's a hernia, and he's in quite a bit of pain - poor dude! I'm glad he went right in to get it checked out. His surgery is scheduled for Wednesday - same day as Hans' consultation.
I owe thank yous to:
Ellen Shohet at TCH who has worked really hard coordinating us with three hospitals and never complaining when I change my mind!
Michelle Nolen researched a special program called CAREFORCE through Continental that provides flight assistance to families traveling for medical purposes and she sent out an email to a few of our friends and contacts yesterday - and she was able to able to acquire enough donated miles in one day for Hans and one caregiver to make FOUR or FIVE trips for medical treatment or consultation. (The number of miles charged depends on how booked the flight is.) People donated 266,000 miles yesterday! Pretty amazing! If there are other families out there who could benefit from this program, please email me and I'll give you the contact info.
Thank you to: The Marek Family, The Arnett Family, The Garrett Family, The Watthuber Family, The Diket Family, and The Neveu's for their generous donations of miles. With those donations we will be able to travel to Philly for consultation, and treatment. I was beginning to panic about buying tickets on such short notice. The last time I looked, it was going to cost us $1198 per ticket to get to Cincinnati on a week's notice. What a really incredible donation that has helped us out tremendously. Careforce also has a program where they will simply buy you a ticket to travel for medical treatment every 12 months. They waived the transfer fee to donate these miles.
Darren, Alana, and Dave, thanks for helping Elle and I clean up the yard after the disaster crew came through and picked up the two large piles that once was our tree!
Kev wanted to be out there - but his darn hernia...
lara
Subscribe to:
Posts (Atom)