Hello! Happy Halloween. As for us, we've had our share of scares this month! In fact, I think I'm a little overdosed on the whole Halloween gore decor. When we were first diagnosed in 2006, Hans hit TCH Oct 21st and was diagnosed the
25th with Stage IV High Risk NB. Halloween decor was everywhere throughout the backdrop of that experience. It was a little like the Twilight Zone to be back in it all over again - the same exact week, just three years later. When you are inpatient, you get wheeled everywhere for your scans by transport. We've had our fave transport guy "smooth ride" Sonny, hauling us through back alleys of the hospital, with the same spooky Halloween decor popping out at us in the hallways...'prepare for a scare', the signs say. No thanks, I'm preparing to be pleasantly surprised by our next findings! I'm ready for the skeletons to come down and the pilgrims and turkeys to go up.
Nonetheless, we are going trick or treating! Hans was rarin' to go to our local community shopping center last night, and he is going to hit the 'hood tonight. He is dressed up as Bumblebee (the transformer) and I was surprised that he was wearing his mask the whole time. He walked the whole night - which was more of a physical effort than he's been up for in a while, and he actually kept trying to hold his candy bag in his right hand. I had to keep correcting him. Elle, at 11, is totally into it. I'm pleasantly surprised by that. Both my kids are very discriminating candy eaters. I'll be able to pilfer quite a bit, and we can always bring the remainder to clinic.
Our friend Kelly lost her long hard battle with Breast Cancer this morning. I was able to visit with her and pray the rosary with her earlier in the week. I so admired her strength and determination. I have known her for at least four years, and she had been fighting her cancer longer than that. She didn't let treatment or diagnosis get in the way of her agenda. She has Homeschooled her boys Taylor, 10 and Blaze, 6 throughout her cancer experience. I'm praying for those boys right now as they transition into the next phase of their lives. Praying for Kelly, and her family, may she rest in peace.
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.
Saturday, October 31, 2009
Thursday, October 29, 2009
Inconclusive
Wow - this is an interesting turn on this roller coaster. We have been harboring some secret hopes of a differential diagnosis - something along the lines of a bone infection - stories of which a handful of NB families have shared with us. But, since I have been getting such DIRE information from clinic - I didn't even put those hopes out on this blog, but we've held them close and we've been watching Hans' slight IMPROVEMENT in the use of his arm and his DECREASE in his need for pain meds, and we've been scratching our heads that this doesn't exactly reek of Recurrent NB, Part 2.
Yet, up until today, we've been told all signs point to NB. We were told on Tuesday that the pathologist was 100% sure it was a cancer/90% sure it was Neuroblastoma.
Today - we sat through an office visit with an incomplete pathology report. We debated open clinical trials, excited at the news that the Aurora A Kinase Inhibitor Phase II trial opened TODAY. We also debated a couple of other trials, and the benefit of starting therapy with a known effective therapy - such as Irinotecan/Temodor. Kevin and I had been asking about this Bone Infection theory - but we kept getting "NO" as the response.
And then, on the way home, the phone rang. The Pathologist had given up looking for cancers! No stains matched. Not Neuroblastoma, not Osteosarcoma, not Lymphoma. The samples did not indicate leukemia. A second opinion was sought by a Children's Oncology Group Pathologist. This pathologist noted that the cells in the sample were not dividing nearly fast enough to be an aggressive cancer such as Neuroblastoma! So - they are retracting their statement that this is 100% a cancer. The plan is to do an open biopsy and go from there. One possibility is that they are NB cells, but that they somehow got damaged in the process of obtaining the biopsy??? Anything could happen with this biopsy from: diagnosis Neuroblastoma, to some rare bone infection to: no known cause???? Wild. But, we'll take it!
Today Hans had a CT Scan and a Bone Scan. The CT was NORMAL. The Bone Scan appeared normal to the docs but hadn't been signed off by Radiology. That is - normal with the exception of the large right arm bone that lights up indicating the trouble we knew about it.
Well...that's where we sit. Don't know when we'd get in to do an Open Biopsy...don't know if we'll get the green light on starting back up with the next Round of ABT751... don't know what we'll find in a biopsy... don't know and for the moment don't care to know. I'll take the uncertainty and the hope that goes along with it.
Thanks for the prayers, and the love, the emails, texts, calls and everything. Thanks for the NB families that shared their crazy bone anomaly stories that have given us this hope.
Every day is an Adventure. Every day is a gift.
Lara
Yet, up until today, we've been told all signs point to NB. We were told on Tuesday that the pathologist was 100% sure it was a cancer/90% sure it was Neuroblastoma.
Today - we sat through an office visit with an incomplete pathology report. We debated open clinical trials, excited at the news that the Aurora A Kinase Inhibitor Phase II trial opened TODAY. We also debated a couple of other trials, and the benefit of starting therapy with a known effective therapy - such as Irinotecan/Temodor. Kevin and I had been asking about this Bone Infection theory - but we kept getting "NO" as the response.
And then, on the way home, the phone rang. The Pathologist had given up looking for cancers! No stains matched. Not Neuroblastoma, not Osteosarcoma, not Lymphoma. The samples did not indicate leukemia. A second opinion was sought by a Children's Oncology Group Pathologist. This pathologist noted that the cells in the sample were not dividing nearly fast enough to be an aggressive cancer such as Neuroblastoma! So - they are retracting their statement that this is 100% a cancer. The plan is to do an open biopsy and go from there. One possibility is that they are NB cells, but that they somehow got damaged in the process of obtaining the biopsy??? Anything could happen with this biopsy from: diagnosis Neuroblastoma, to some rare bone infection to: no known cause???? Wild. But, we'll take it!
Today Hans had a CT Scan and a Bone Scan. The CT was NORMAL. The Bone Scan appeared normal to the docs but hadn't been signed off by Radiology. That is - normal with the exception of the large right arm bone that lights up indicating the trouble we knew about it.
Well...that's where we sit. Don't know when we'd get in to do an Open Biopsy...don't know if we'll get the green light on starting back up with the next Round of ABT751... don't know what we'll find in a biopsy... don't know and for the moment don't care to know. I'll take the uncertainty and the hope that goes along with it.
Thanks for the prayers, and the love, the emails, texts, calls and everything. Thanks for the NB families that shared their crazy bone anomaly stories that have given us this hope.
Every day is an Adventure. Every day is a gift.
Lara
Wednesday, October 28, 2009
Hanging...
Just got an email from Dr. Russell that the Pathologist won't finalize anything until tomorrow.
We did get a Bone Scan, and a CT scheduled for tomorrowas well as counts and an office visit. We think we're in line for an early Bone Marrow Biopsy on Monday.
I imagine I'll be able to post tomorrow evening with some news.
Lara
We did get a Bone Scan, and a CT scheduled for tomorrowas well as counts and an office visit. We think we're in line for an early Bone Marrow Biopsy on Monday.
I imagine I'll be able to post tomorrow evening with some news.
Lara
Tuesday, October 27, 2009
Unconfirmed
Hi,
So - we had a pretty rough appt with Dr. Russell today. At the time we saw her, she had contacted the Pathologist at the lab. At that point he had suspected NB at about a 90% confidence. He just hadn't confirmed it with a stain. We were to wait until 5pm for confirmation. I got off the phone with Dr. Russell a little while ago. She had received an email from the pathologist, saying that he was unable to confirm NB with a certain stain, but that he still suspected it, and would try again in the morning. The thing is - they are pretty sure that it is a cancer. The crazy thing it might be possible that Hans is suffering from something like Osteo Sarcoma or AML. If that is the case, Dr. Russell assured us we would treat with the intent to cure. Oh my goodness. What a rollercoaster. Don't even know what to pray for. That's it's all wrong - that somehow the "infiltrant" detected in Hans' Bone Marrow cannot, must not be a cancer.
Thank you for your thoughts and prayers now. We are waiting. I don't know if we will be informed of anything tomorrow. It's not usually much of a communication day in clinic. We are trying to get Hans scheduled for a CT and a bone scan and a Bone Marrow Biopsy. The thinking is, if this is indeed disease (which they think it is now), and it is no longer MIBG avid, we don't know how many areas are involved.
So - we had a pretty rough appt with Dr. Russell today. At the time we saw her, she had contacted the Pathologist at the lab. At that point he had suspected NB at about a 90% confidence. He just hadn't confirmed it with a stain. We were to wait until 5pm for confirmation. I got off the phone with Dr. Russell a little while ago. She had received an email from the pathologist, saying that he was unable to confirm NB with a certain stain, but that he still suspected it, and would try again in the morning. The thing is - they are pretty sure that it is a cancer. The crazy thing it might be possible that Hans is suffering from something like Osteo Sarcoma or AML. If that is the case, Dr. Russell assured us we would treat with the intent to cure. Oh my goodness. What a rollercoaster. Don't even know what to pray for. That's it's all wrong - that somehow the "infiltrant" detected in Hans' Bone Marrow cannot, must not be a cancer.
Thank you for your thoughts and prayers now. We are waiting. I don't know if we will be informed of anything tomorrow. It's not usually much of a communication day in clinic. We are trying to get Hans scheduled for a CT and a bone scan and a Bone Marrow Biopsy. The thinking is, if this is indeed disease (which they think it is now), and it is no longer MIBG avid, we don't know how many areas are involved.
Monday, October 26, 2009
Monday
We have been home all weekend.
Hans has been staying here, taking it easy at home, with Daddy.
Elle and I have made it out and about a bit more. She had a good game on Saturday. She had a quick turn in goalie with one beautiful belly dive save. They didn't quite win, just lost by one, but that's not what it's all about, right?
We also made it out to Octoberfest at SSJ yesterday. Elle won third place in the costume contest for her age group. It doesn't hurt her odds that the total number of entrants in the 11-14 y.o. age group drops off a bit from the younger age groups. Here she is as A 50's Sock Hop Girl.
We have an office visit with Dr. Russell tomorrow mid-morning. Hopefully we'll have some results. Praying that this thing is somehow treatable!
Lara
Friday, October 23, 2009
Bone Biopsy
Hans went in for the Bone Biopsy at about 10am and was done by 11am. He had two hours of recovery and he is now back up in his room eating and playing. We are going to go home, pretty soon I think! Results due on Tuesday. Now we wait!
More thanks... thanks to Matilda for offering mass by Father Vincent in Hans' honor.
Thanks to the Naughton's and the Ford's for squiring Elle to and from soccer. That girl hasn't had to miss a beat. I went home and was happy to hang with her last night! Two more: Thanks to Carmen for taking care of Elle today, and to Nurse Natalie who dropped of some cool Transformer Walkie Talkies!
Lara
More thanks... thanks to Matilda for offering mass by Father Vincent in Hans' honor.
Thanks to the Naughton's and the Ford's for squiring Elle to and from soccer. That girl hasn't had to miss a beat. I went home and was happy to hang with her last night! Two more: Thanks to Carmen for taking care of Elle today, and to Nurse Natalie who dropped of some cool Transformer Walkie Talkies!
Lara
Thursday, October 22, 2009
MIBG Negative
But, don't get too excited yet! We understand that about 20% of kids are not MIBG avid. Hans has always been MIBG avid, but it could just be that he is not MIBG avid all of a sudden??? So, the next step is a Bone Biopsy. We have never been through this and we don't know how hard it will be on Hans - they'll try to get him on the schedule for tomorrow.
We had great luck this morning with going for an early test. Not sure if I"m burning all our luck up yet - we'll see.
The Biopsy will take several days for a read - they have to decalcify the bone, and then get some cells on a slide. Possible outcomes include: Neuroblastoma, Infection, Secondary Malignancy, or...nothing (meaning they miss the problem in the biopsy). We were told it was rare, but if nothing comes back on the slide - they'd have to go in and do a more invasive surgical procedure. Wow-what a mess. So, here we sit... if we get in tomorrow, we wait til Monday or Tuesday for results. If we don't, we wait til Monday for the biopsy.
I believe we have a good shot of being sent home tomorrow, so long as Hans tolerates the procedure with no surprises (if we have it)! His arm has declined rapidly this week. He keeps it very stabilized (The MRI did detect a small fracture), and uses it very minimally. However, he has refused pain meds all day, and has only had two oral doses of the stuff since 9pm. Hans is a trip.
Thanks for the prayers. I know a lot of you are very concerned about Hans right now. I'm not sure if this falls into the category of good news, bad news, or odd news. He is being carefully considered. We are wrapping this boy up in all of our love.
Thanks to my girlfriends who sent Michelle down with a special care package today. It was sweet - Hans worked on the Lego Indiana Jones set all day! We have enough quarters for 40 nights in the hospital!!! My gosh, hope we are outta here tomorrow night anyway! Thanks to Mayada and Sarah for popping in on us and for a hug and flowers. It's so endearing to me - Hans has been around here a while now, (3 years to the day since he first hit the 9th floor!) and when the nurses and staff catch wind that he is on the floor, our old friends make their way around to say hi. Our nurse yesterday told me that a newer nurse said, "I'm just gonna have to come and meet this Hans everyone's talking about!"
Good night! Lara
We had great luck this morning with going for an early test. Not sure if I"m burning all our luck up yet - we'll see.
The Biopsy will take several days for a read - they have to decalcify the bone, and then get some cells on a slide. Possible outcomes include: Neuroblastoma, Infection, Secondary Malignancy, or...nothing (meaning they miss the problem in the biopsy). We were told it was rare, but if nothing comes back on the slide - they'd have to go in and do a more invasive surgical procedure. Wow-what a mess. So, here we sit... if we get in tomorrow, we wait til Monday or Tuesday for results. If we don't, we wait til Monday for the biopsy.
I believe we have a good shot of being sent home tomorrow, so long as Hans tolerates the procedure with no surprises (if we have it)! His arm has declined rapidly this week. He keeps it very stabilized (The MRI did detect a small fracture), and uses it very minimally. However, he has refused pain meds all day, and has only had two oral doses of the stuff since 9pm. Hans is a trip.
Thanks for the prayers. I know a lot of you are very concerned about Hans right now. I'm not sure if this falls into the category of good news, bad news, or odd news. He is being carefully considered. We are wrapping this boy up in all of our love.
Thanks to my girlfriends who sent Michelle down with a special care package today. It was sweet - Hans worked on the Lego Indiana Jones set all day! We have enough quarters for 40 nights in the hospital!!! My gosh, hope we are outta here tomorrow night anyway! Thanks to Mayada and Sarah for popping in on us and for a hug and flowers. It's so endearing to me - Hans has been around here a while now, (3 years to the day since he first hit the 9th floor!) and when the nurses and staff catch wind that he is on the floor, our old friends make their way around to say hi. Our nurse yesterday told me that a newer nurse said, "I'm just gonna have to come and meet this Hans everyone's talking about!"
Good night! Lara
Wednesday, October 21, 2009
MIBG this week
We got into the MIBG scan this week. Injection will be today and scan tomorrow. Some poor kid out there got his/her scanned bumped for us. I'm sorry for the drama that must have brought to their family; may that child enjoy beautiful clear scans next week!
The MIBG may confirm what we already suspect. Then we can have at it! We are keeping Dr. Maris' team at CHOP in the loop, so we want to make sure they are on board every step of the way.
Hans' pain is now pretty consistent. The docs are looking to find an effective oral pain med so that we can take care of him at home. It was useful to be here up until now, however, I believe it expedited us getting into the MRI and the MIBG in such a timely manner. I just don't like it when we use up all of our luck on Hospital Efficiency! I'd prefer we saved some luck for Good Results.
Hangin' in there...
Lara
The MIBG may confirm what we already suspect. Then we can have at it! We are keeping Dr. Maris' team at CHOP in the loop, so we want to make sure they are on board every step of the way.
Hans' pain is now pretty consistent. The docs are looking to find an effective oral pain med so that we can take care of him at home. It was useful to be here up until now, however, I believe it expedited us getting into the MRI and the MIBG in such a timely manner. I just don't like it when we use up all of our luck on Hospital Efficiency! I'd prefer we saved some luck for Good Results.
Hangin' in there...
Lara
Tuesday, October 20, 2009
MRI Read...
Hans and Kevin not posing for me tonight!
Hans tonight watching his movie...
Discoloration and swelling at the sight of pain in upper right arm. While there are still a couple of possibilities, one possibility is a second recurrence of NB. Next, we will do an MIBG scan. if we have any luck, they will squeeze us in tomorrow. If not, we will wait have to wait until next week. Staying put at the hospital for now to control pain. Hans' pain seems like it is beginning to limit his range of motion - he's eating and drinking primarily with his left hand now.
If MIBG is positive, it means NB is back and we will treat as quickly and intelligently as possible, in consultation with CHOP. If MIBG is negative, then we will do a biopsy of the bone and go from there.
That's the scoop. We are watching the new Transformers movie, conveniently, it came out today on DVD.
Lara
MRI Complete - Awaiting results
We had a scheduling miracle this morning. Hans was first slotted for a 4:30 pm MRI with the possibility of being bumped into an earlier time. He was told to go without food or drink (NPO) all day in the event that he got moved up. I requested an earlier time - I just hate him having to go all day with out food with his history of Hypoglycemic episodes...But everyone just looked at me like I was crazy. In my mind, he should have a Gold Card in his pocket that says, "I can't go NPO long," but I'm sure all mommies feel that way! But, then, we got the news at 6am that they were going to take him first case. Yeah! If only our results will be so amazingly good.
He is already back, and eating and relaxing in the room. He turns into a bit of a grouchy bear after anesthesia (he had to be sedated with Propofal for the MRI) so I am getting him what he needs and giving him some space! Now we wait. I have no idea when a radiologist will review the study and when our docs will inform us of results. I just hope whatever it is it's very treatable.
He was pretty funny last night. Elle had a well child visit yesterday. Hans talked to her and got all the gory detailed of the three shots she needed for immunizations. He wanted to know how bad it hurt and where she got each shot! At least he's not the only one in our family getting all poked up.
Lara
He is already back, and eating and relaxing in the room. He turns into a bit of a grouchy bear after anesthesia (he had to be sedated with Propofal for the MRI) so I am getting him what he needs and giving him some space! Now we wait. I have no idea when a radiologist will review the study and when our docs will inform us of results. I just hope whatever it is it's very treatable.
He was pretty funny last night. Elle had a well child visit yesterday. Hans talked to her and got all the gory detailed of the three shots she needed for immunizations. He wanted to know how bad it hurt and where she got each shot! At least he's not the only one in our family getting all poked up.
Lara
Monday, October 19, 2009
Oh, My Baby
We are not getting off this rollercoaster yet. As soon as I post of good news/no problems, then things take a turn. Sunday we had a great day. Hans was low energy, but he helped me around the house and yard and we did some shopping while Kevin and Elle were cheering in Orange! (GO Dynamo.) Then, he was good all night until about 9:30 pm when he started to complain about arm pain. He is usually so stoic/tough/not a complainer, that we clearly knew something was wrong for Hans to have pain that made him actually cry. And, he is the one who finally made the decision to go in to the hospital. This is pretty unusual for him.
We got Elle to Michelle, and then hit the ER at midnight. They accessed Hans, gave him IV morphine, and the second dose actually got the pain finally under control. We did a second xray which looked unchanged from Thursday xray. We are now waiting in a relatively cushy/comfy 9th floor room for an MRI. I don't know if it'll be today or tomorrow, we haven't even seen the docs round on us yet. But, Hans' pain is under control and he is sitting up playing video games with his daddy.
Dodie, our Sparrow Clubs Rep, asked me to spread some news to you... If you are local and want to do something to help, you can go out and support the Sparrow Clubs Dinner for Hans tomorrow night Oct 20th from 4-11pm at Chili's. Branch Crossing 9th Grade Campus has adopted Hans as their sparrow child. The funds help to pay for Hans' treatments and our quarterly travels to CHOP. They are a lifesaver. So, if you are hungry tomorrow, and need to eat - go to CHILI"S in Sterling Ridge (Woodlands Pkwy and Kuykendahl) 10% of your order (dine in or take out) goes to Sparrows for Hans. Just ask for a flyer at the front. I tried to attach here - but it didn't work.
Thank you! I'll Keep you posted on what's happening here. I think we are looking at a couple of possibilities here: Recurrence? Bone Infection? Neuropathy? Some thing else? It's hard not to cringe when we see him hold that arm in the exact spot he relapsed the first time around.
Thanks for the love. Thanks for the thoughts and prayers. Thanks to Michelle for being on Elle duty this week. Thanks to Alana for helping out with Honey. Don't know how much longer we'll be here, but hopefully not tooo much longer!
Lara
We got Elle to Michelle, and then hit the ER at midnight. They accessed Hans, gave him IV morphine, and the second dose actually got the pain finally under control. We did a second xray which looked unchanged from Thursday xray. We are now waiting in a relatively cushy/comfy 9th floor room for an MRI. I don't know if it'll be today or tomorrow, we haven't even seen the docs round on us yet. But, Hans' pain is under control and he is sitting up playing video games with his daddy.
Dodie, our Sparrow Clubs Rep, asked me to spread some news to you... If you are local and want to do something to help, you can go out and support the Sparrow Clubs Dinner for Hans tomorrow night Oct 20th from 4-11pm at Chili's. Branch Crossing 9th Grade Campus has adopted Hans as their sparrow child. The funds help to pay for Hans' treatments and our quarterly travels to CHOP. They are a lifesaver. So, if you are hungry tomorrow, and need to eat - go to CHILI"S in Sterling Ridge (Woodlands Pkwy and Kuykendahl) 10% of your order (dine in or take out) goes to Sparrows for Hans. Just ask for a flyer at the front. I tried to attach here - but it didn't work.
Thank you! I'll Keep you posted on what's happening here. I think we are looking at a couple of possibilities here: Recurrence? Bone Infection? Neuropathy? Some thing else? It's hard not to cringe when we see him hold that arm in the exact spot he relapsed the first time around.
Thanks for the love. Thanks for the thoughts and prayers. Thanks to Michelle for being on Elle duty this week. Thanks to Alana for helping out with Honey. Don't know how much longer we'll be here, but hopefully not tooo much longer!
Lara
Saturday, October 17, 2009
In Action
Hi Guys,
Just a quick post to say that Elle rocked the talent show. It was so fun. I had some butterflies, but I don't think she did. She was one of twenty of the 600 kids at Wilkerson who "found a nerve", as the teacher MC said. She was one of two kids to rap, one of two kids to go without musical accompaniment. She had some moves. She got rousing applause. We had fun! I was also proud of my troop too! Our girls (ten total at the school) were totally overrepresented in the talent show - with 4 entries. It was cool! So I'm a proud mom and a proud former troop leader.
I hear E did well in her game with a good turn in goal as well as in the field. I hear she let no balls by on her watch and did 4 blocks, one being truly impressive! Thanks to the team manager, Shawn, who forwarded me this photo. I've been having tech. difficulties with my camera lately and haven't had much to post. Gotta get on that. Sorry.
I had a good day at the conference. All these Docs were nice enough to spend their Saturday with the parents. Athena and all the volunteers did a fabulous job! Pat with the CNCF is the best. Vickie is taking the lanyard thing through the roof! Check out this link if you want to see the President of the United States of America, Barack Obama, talk about both my friend Erin B, and lanyards! Forward to min 26:30
http://c-span.com/Watch/Media/2009/10/16/HP/R/2436/Pres+Obama+Pres+George+HW+Bush+Honor+Volunteers.aspx
In Hans news... no new complaints of pain. He seems to be bearing weight on that arm and everything. This is good.
Lara
Friday, October 16, 2009
Pain
This is exactly the kind of post I hate to write; the kind of news that every NB family hates to face. But, UGH, here we are just three weeks out from scans and Hans is starting to have some arm pain (right upper arm=original site of relapse). We actually first heard him complain Wednesday night in his sleep. Then, we managed to get him in to see Dr. Russell yesterday. She did a quick xray and the radiology report was not exactly normal. It isn't necessarily awful news, just a question mark... That area suffered significant damage at initial relapse. It was actually so eaten through with tumor that it was broken off of the growth plate. Hans made a remarkable recovery and response to therapy. There are a number of possible explanations for a bone that doesn't look normal at this point in therapy:
-bone problems from radiation
-bone problems from initial tumor activity
-even bone density issues from stress dose steroids usage
-I'm sure she even listed a few more things that I am now forgetting!
-or, even, possibly new NB activity.
Dr. Russell didn't think it was that, really. So we are going to wait a few days, if he continues to have pain, we'll get him in for an MRI. We only have old xrays to compare this current xray against. So, it's not "apples to apples".
CHOP will also be notified. And, right now, I am reminding myself of something Dr. Mosse said to us. Back in June 2009 when we received news from her that his scans were once again clear, I thanked her through tears of sincere gratitude that automatically well up when I hear those merciful words. I so appreciated what she said to me next, "Even if they hadn't been clean, there are things we can do." I needed to hear that. There is always hope. Kevin and I live by the philosophy that everyday we keep Hans afloat, researchers are learning more and more about this ugly disease. Thank God, there is great hope in the future. I believe this; I must believe this.
Anyway - we've had one drama or another for the last month or so and are quite ready for a long stretch of normal days. We shall see about that.
In other news... looking forward to the weekend, tonight is the Talent Show! Go Elle! Saturday I'm going to be at the NB Regional Conference, while everyone else will have a day of soccer and b'day parties. Then, on Sunday, Kevin and Elle should join other members of the soccer team to see the Houston Dynamo vs. the LA Galaxy and yes, Beckham! I'm a little jealous;)
Lara
-bone problems from radiation
-bone problems from initial tumor activity
-even bone density issues from stress dose steroids usage
-I'm sure she even listed a few more things that I am now forgetting!
-or, even, possibly new NB activity.
Dr. Russell didn't think it was that, really. So we are going to wait a few days, if he continues to have pain, we'll get him in for an MRI. We only have old xrays to compare this current xray against. So, it's not "apples to apples".
CHOP will also be notified. And, right now, I am reminding myself of something Dr. Mosse said to us. Back in June 2009 when we received news from her that his scans were once again clear, I thanked her through tears of sincere gratitude that automatically well up when I hear those merciful words. I so appreciated what she said to me next, "Even if they hadn't been clean, there are things we can do." I needed to hear that. There is always hope. Kevin and I live by the philosophy that everyday we keep Hans afloat, researchers are learning more and more about this ugly disease. Thank God, there is great hope in the future. I believe this; I must believe this.
Anyway - we've had one drama or another for the last month or so and are quite ready for a long stretch of normal days. We shall see about that.
In other news... looking forward to the weekend, tonight is the Talent Show! Go Elle! Saturday I'm going to be at the NB Regional Conference, while everyone else will have a day of soccer and b'day parties. Then, on Sunday, Kevin and Elle should join other members of the soccer team to see the Houston Dynamo vs. the LA Galaxy and yes, Beckham! I'm a little jealous;)
Lara
Monday, October 12, 2009
Home Again
We made it home! Still no real clue as to what caused the initial fever, or the dip in Blood Pressure. We did find out once again that it wasn't A B flu, nor H1N1. But - I've already got Dr. Russell and the CHOP team "on it". Hans should be well-considered.
Hans and I hung out at the 'hossable' last night while Kev went home to be with Elle and get ready for work. Hans was funny when he found out yesterday that we had to stay another night. He said, "Those Doctors must really love me if they want me to keep staying here!" I think they do love him! They think he is the cutest little curly blonde mystery!
Elle spent the weekend with Michelle and Mark until Mark brought her down to Kevin this afternoon and they all picked us up for home.
Hans was also funny making plans over my cell with his dad while he was enroute, I kept hearing him tell Kevin, "Dude, you're breaking up!"
Thanks to Athena and fam for bringing us treats on 7!!!
Thanks to Michelle and fam for taking such great care of Elle this weekend. It is actually pretty hard for me to be without my girl when we have to be inpatient - but I know she was in good hands.
Thanks to everyone else for your texts, call and emails, offers of help and playdates.
We just hope we're out of the woods. Kevin is suggesting that we keep Hansie home from the school germs til he's back to 100%. I'll try to get some of Hans' classwork for the week. I don't know what it is like in other parts of the country this Fall, but here in Houston - it's a MAJOR flu epidemic. We've NEVER seen the hospital on such strict regulation. We feel they were conservative in making decisions for Hans based on the severity of things they have seen in the general population. So - be careful out there - wash your hands!
Lara
Hans and I hung out at the 'hossable' last night while Kev went home to be with Elle and get ready for work. Hans was funny when he found out yesterday that we had to stay another night. He said, "Those Doctors must really love me if they want me to keep staying here!" I think they do love him! They think he is the cutest little curly blonde mystery!
Elle spent the weekend with Michelle and Mark until Mark brought her down to Kevin this afternoon and they all picked us up for home.
Hans was also funny making plans over my cell with his dad while he was enroute, I kept hearing him tell Kevin, "Dude, you're breaking up!"
Thanks to Athena and fam for bringing us treats on 7!!!
Thanks to Michelle and fam for taking such great care of Elle this weekend. It is actually pretty hard for me to be without my girl when we have to be inpatient - but I know she was in good hands.
Thanks to everyone else for your texts, call and emails, offers of help and playdates.
We just hope we're out of the woods. Kevin is suggesting that we keep Hansie home from the school germs til he's back to 100%. I'll try to get some of Hans' classwork for the week. I don't know what it is like in other parts of the country this Fall, but here in Houston - it's a MAJOR flu epidemic. We've NEVER seen the hospital on such strict regulation. We feel they were conservative in making decisions for Hans based on the severity of things they have seen in the general population. So - be careful out there - wash your hands!
Lara
Sunday, October 11, 2009
From the 7th Floor!?!
Good morning,
I am posting today from the Seventh Floor. We don't know if there is something significant going on with Hans that we are not catching, or if he just has had a rough October, but we woke up yesterday and Hans felt warm. He was actually 101.9 - so a trip to the TCH ER ensued. For a moment there, after a chest xray, they thought Hans had a touch of pneumonia, but the radiologist disagreed. The big concerns yesterday were fever and a lower-than-normal BP. I actually wasn't too worried about Hans' BP - seems like normal for him is something like 85/50. It was lower yesterday and the ER docs wanted him on monitors. The stinky thing about that meant that when were admitted we couldn't be placed on our home-away-from-home 9th floor, and had to be placed on 7. 7 is the Progressive Care Unit, a step-down unit from the ICU. It didn't really make that much sense to us b/c Hans hasn't really seemed that sick... But, 24 hours later, Hans has had 6 doses IV antibiotics for a possible bacterial infection, started Tamiflu for a possible Flu (we are waiting on labs), he has had non-stop IV fluids running and he actually hasn't had fever since we got admitted.
I'm not sure how long we'll be here - we are just along for the ride. We sort of surrender to the fever and all of these happenings. Kevin and I are hanging out with Hans here, and our lovely friend and neighbor Michelle, graciously opened her doors to Elle at 6am yesterday so that she could be taken in for a normal weekend. It's hard in our situation to be so far away from our loving extended family, but it is nice to have friends that will open their doors to us in a moment's notice.
We'll keep you posted. I wouldn't be surprised if they discharged us today, but at the same time, I wouldn't be surprised if they kept us another night. Hans seems to doing fine though! No fever, he is sitting up in bed, playing, talking and eating. I have a theory that when he is sick and has fever, his Adrenal Insufficiency complicates things, he gets a little dehydrated and his chemistries get out of whack, and the best thing we can do for him is sit on him and give him fluids. I just hope that whenever we do go home he stays well! They haven't found an underlying cause, and they don't have any idea if yesterday's fever was linked to or separate from last Wednesday night's fever.
Thanks for checking up on us...Lara
I am posting today from the Seventh Floor. We don't know if there is something significant going on with Hans that we are not catching, or if he just has had a rough October, but we woke up yesterday and Hans felt warm. He was actually 101.9 - so a trip to the TCH ER ensued. For a moment there, after a chest xray, they thought Hans had a touch of pneumonia, but the radiologist disagreed. The big concerns yesterday were fever and a lower-than-normal BP. I actually wasn't too worried about Hans' BP - seems like normal for him is something like 85/50. It was lower yesterday and the ER docs wanted him on monitors. The stinky thing about that meant that when were admitted we couldn't be placed on our home-away-from-home 9th floor, and had to be placed on 7. 7 is the Progressive Care Unit, a step-down unit from the ICU. It didn't really make that much sense to us b/c Hans hasn't really seemed that sick... But, 24 hours later, Hans has had 6 doses IV antibiotics for a possible bacterial infection, started Tamiflu for a possible Flu (we are waiting on labs), he has had non-stop IV fluids running and he actually hasn't had fever since we got admitted.
I'm not sure how long we'll be here - we are just along for the ride. We sort of surrender to the fever and all of these happenings. Kevin and I are hanging out with Hans here, and our lovely friend and neighbor Michelle, graciously opened her doors to Elle at 6am yesterday so that she could be taken in for a normal weekend. It's hard in our situation to be so far away from our loving extended family, but it is nice to have friends that will open their doors to us in a moment's notice.
We'll keep you posted. I wouldn't be surprised if they discharged us today, but at the same time, I wouldn't be surprised if they kept us another night. Hans seems to doing fine though! No fever, he is sitting up in bed, playing, talking and eating. I have a theory that when he is sick and has fever, his Adrenal Insufficiency complicates things, he gets a little dehydrated and his chemistries get out of whack, and the best thing we can do for him is sit on him and give him fluids. I just hope that whenever we do go home he stays well! They haven't found an underlying cause, and they don't have any idea if yesterday's fever was linked to or separate from last Wednesday night's fever.
Thanks for checking up on us...Lara
Thursday, October 08, 2009
K lookin' good!
I'm just going to hit the high points of the past few days here:
Hans is lookin' good. He has gone back to school Weds and Thursday this week (making for a grand total of 7 out of the last possible 19 days of school - with our trip, his bout of separation anxiety, and then this recent fever!) We found out that Hans came back negative for H1N1, and everything else - we don't even know what got him, but he is looking good now! Hans had a great Potassium of 3.8 today. We'll go get him checked back out next week. He is on Day 6 of this (11th) round of ABT-751. I think it's going pretty well. It seems like the drug is shortening his fuse a little bit. He kind of shouts out at me a little when I'm prodding to get him to do something. But, it doesn't seem to be a terrible Round. I was thrilled that Hans was 'present' for picture day yesterday - can't wait to see and share those pictures. I bought the USB device package so I'll be able to share with you right away!
Elle is busy as a bee. Yesterday she got to go to the Houston Zoo on a school field trip. As I update today she is staying after school to participate in Part One of the school talent show. She is singing/rapping the theme song to The Fresh Prince of Bel Aire. It should be fun!
For those of you who have had a chance to meet my friend Kelly, please keep her and her boys in your thoughts and prayers over the next weeks. She is grappling with some difficult decisions regarding her ongoing breast cancer treatment.
Thanks for checking in on us.
Lara
Hans is lookin' good. He has gone back to school Weds and Thursday this week (making for a grand total of 7 out of the last possible 19 days of school - with our trip, his bout of separation anxiety, and then this recent fever!) We found out that Hans came back negative for H1N1, and everything else - we don't even know what got him, but he is looking good now! Hans had a great Potassium of 3.8 today. We'll go get him checked back out next week. He is on Day 6 of this (11th) round of ABT-751. I think it's going pretty well. It seems like the drug is shortening his fuse a little bit. He kind of shouts out at me a little when I'm prodding to get him to do something. But, it doesn't seem to be a terrible Round. I was thrilled that Hans was 'present' for picture day yesterday - can't wait to see and share those pictures. I bought the USB device package so I'll be able to share with you right away!
Elle is busy as a bee. Yesterday she got to go to the Houston Zoo on a school field trip. As I update today she is staying after school to participate in Part One of the school talent show. She is singing/rapping the theme song to The Fresh Prince of Bel Aire. It should be fun!
For those of you who have had a chance to meet my friend Kelly, please keep her and her boys in your thoughts and prayers over the next weeks. She is grappling with some difficult decisions regarding her ongoing breast cancer treatment.
Thanks for checking in on us.
Lara
Monday, October 05, 2009
More Excitement
But... not so much... Hans was looking great, and then a little puny at times over the weekend. I swear, as Pedi-cancer parents, all we have to work with are our instincts. As Kevin and I were hanging out with Hans over the weekend, he just seemed a little off... but not necessarily off enough to initiate a call to the Hemonc on call and thus a trip to the ER. So, we decided we'd hold him out of school, and call clinic at 8am to request a counts recheck - we did, and the result wasn't sooo hot. Hans' Potassium came back low again today at 2.8. Yikes! Poor little dude. So, we gave him an immediate supplement, and we have a plan: Keep him stress dosed on steroids for now for whatever it is he is fighting off, and dose him with Potassium supplements two times a day, keep him out from school again
tomorrow:( and recheck his Potassium again on Thursday. I think we can handle that. The theory is that in a few days, we'll be able to cut back on the steroids and the Potassium will level off (there is an interrelationship there). So we'll see how that goes. Meanwhile, I take it as a very good sign that Hans is asking about his pals Owen and Federico at Kindergarten. We hope Hans gets to check in with them on Wednesday. I hate that he has had to miss so much!
In other news, we had an okay soccer game. Would you believe Elle is now the tallest girl on her team? I can't believe that - I'm the 5'2" lady that always held the class sign on picture day. So, I think it's her height (about 5'0") and her courage that land her in goal. She played goalie for the first half of the game. I was beaming with Mama Pride as she deflected at least 20 shots and only let 2 through. We lost 3-0.
And then, I had a wonderful night on Saturday... Charon (Carlie's Mom) and her friend Lisa hosted a beautiful Lanyard Workshop. Vickie B. (Erin's Mom) joined us from Bryan and we provided enough beads and starts for 45 plus ladies to come and bead for a cause. It was awesome. Charon and Lisa put up a to-die-for spread, and the ladies beaded some beautiful stuff. Thanks to my pals Dana and Vickie and Laurie who were able to come out. The funny thing was that I left with not a single lanyard. Everyone bought them up for themselves, a friend or a teacher gift. I have to get busy now and stock back up. Thanks too to Debbie and KK and Paige - all of your lanyards are GONE. KK - your fun/funky fish lanyard brought quite a pretty penny in CNCF donations. Thanks everyone.
Everday is an Adventure. Everyday is a Gift!
Lara
tomorrow:( and recheck his Potassium again on Thursday. I think we can handle that. The theory is that in a few days, we'll be able to cut back on the steroids and the Potassium will level off (there is an interrelationship there). So we'll see how that goes. Meanwhile, I take it as a very good sign that Hans is asking about his pals Owen and Federico at Kindergarten. We hope Hans gets to check in with them on Wednesday. I hate that he has had to miss so much!
In other news, we had an okay soccer game. Would you believe Elle is now the tallest girl on her team? I can't believe that - I'm the 5'2" lady that always held the class sign on picture day. So, I think it's her height (about 5'0") and her courage that land her in goal. She played goalie for the first half of the game. I was beaming with Mama Pride as she deflected at least 20 shots and only let 2 through. We lost 3-0.
And then, I had a wonderful night on Saturday... Charon (Carlie's Mom) and her friend Lisa hosted a beautiful Lanyard Workshop. Vickie B. (Erin's Mom) joined us from Bryan and we provided enough beads and starts for 45 plus ladies to come and bead for a cause. It was awesome. Charon and Lisa put up a to-die-for spread, and the ladies beaded some beautiful stuff. Thanks to my pals Dana and Vickie and Laurie who were able to come out. The funny thing was that I left with not a single lanyard. Everyone bought them up for themselves, a friend or a teacher gift. I have to get busy now and stock back up. Thanks too to Debbie and KK and Paige - all of your lanyards are GONE. KK - your fun/funky fish lanyard brought quite a pretty penny in CNCF donations. Thanks everyone.
Everday is an Adventure. Everyday is a Gift!
Lara
Friday, October 02, 2009
2nd post today
Hans spent the day in triage again today. He received a second bag of IV antibiotics. This was mostly preventative, as he has been gratefully fever-free since yesterday afternoon. His Potassium came back into normal range at 3.9! He received fluids today as well, which always help him out when he's a little out of whack. And, we are still waiting for our H1N1 results and we will also push back the start date of this next round (Round 11 of a possible 52) one day until tomorrow.
Yesterday when they did his weigh in Hans was bigger than ever at 103 cm tall and 15.4 kilos! Go Hans, way to grow! He's still very little for his age. But he has at least one little buddy at school who is just his size. We love you Federico! He is looking fairly normal now and playing Wii with his daddy. We will just let him chill out and recover this weekend - no soccer cheering for Hans.
Wanted to let you know. Thanks for all your get well vibes.
Lara
Yesterday when they did his weigh in Hans was bigger than ever at 103 cm tall and 15.4 kilos! Go Hans, way to grow! He's still very little for his age. But he has at least one little buddy at school who is just his size. We love you Federico! He is looking fairly normal now and playing Wii with his daddy. We will just let him chill out and recover this weekend - no soccer cheering for Hans.
Wanted to let you know. Thanks for all your get well vibes.
Lara
Fever and Loss
You never know what you're going to get when you come and visit Hans' page. I never know what to expect, I just try to keep up! Hans had a very successful three big days of school and he seemed pretty wiped out in the afternoons. I just thought -"We'll aren't I smart to put him in school just a half day, it wears him out and it's just right for him." Well, Wednesday night my alarm went off when he said he was chilly, wrapped up in a blankie and fell promptly to sleep at 8:20. I thought - here we go... By 10:00 he was spiking a fever and we had the Hemonc on call telling us to visit our local ER. (Hans still has his Port, and his risk of a line infection is what brings us instantly to the ER after a fever exceeds 101.0.) It was an all-nighter at the ER... we got some fluids, some IV antibiotics, we learned his ears and throat looked good, but his Potassium came back pretty low (at 2.6). Yikes! We were discharged at 7:00am and sent home.
I called our clinic at 8:20 am. By 8:30 they had called me back saying they needed to see Hans. So we packed him up and headed in to clinic. Kevin was able to take the day off to join us, so it was really easy duty for me! The clinic has a triage system that is truly exceptional. If you have to get a fever, it's ideal to get it between 8 and 10 am so that your chance of getting one of the few rooms is best. You get a comfy private room, right on the 14th floor, a dedicated nurse and an actual Hemonc doc. After yesterday I realize it is just health care at its best for Hans. They ran another Potassium and it already came back up to 3.3 (low, but closer to normal) after a supplement and a steroids adjustment. We continued to get negative A/B flu results, but we are still waiting for swine and blood cultures.
We'll go back in today for another dose of IV antibiotics and more labs. Hoping to see that Potassium level off! And, hoping for an ER-free weekend. We'll just have to see how that plays out.
As I arrived at the ER on Wednesday night, I found out from Kevin that his remaining Grandpa, "gramps", Leonard Weberling, had just lost his long standing battle with Prostate Cancer. Gramps was just about the coolest sweetest oldster you could meet. He was the town barber in Snohomish Washington all his life, and then started a small barber shop in his retirement in Desert Aire, WA and worked late into this summer. We are so happy that 3 of us got to see him once again this summer. Gramps gave Hans his first ever haircut back in 2006. He was proud to get to do that special job of taming the unmanageable blond curls of his great grandson! I'm just kind of a hippie about hair and I hated to cut his golden curls. My laptop is down right now, or I'd post some pictures of our fun adventure.
I called our clinic at 8:20 am. By 8:30 they had called me back saying they needed to see Hans. So we packed him up and headed in to clinic. Kevin was able to take the day off to join us, so it was really easy duty for me! The clinic has a triage system that is truly exceptional. If you have to get a fever, it's ideal to get it between 8 and 10 am so that your chance of getting one of the few rooms is best. You get a comfy private room, right on the 14th floor, a dedicated nurse and an actual Hemonc doc. After yesterday I realize it is just health care at its best for Hans. They ran another Potassium and it already came back up to 3.3 (low, but closer to normal) after a supplement and a steroids adjustment. We continued to get negative A/B flu results, but we are still waiting for swine and blood cultures.
We'll go back in today for another dose of IV antibiotics and more labs. Hoping to see that Potassium level off! And, hoping for an ER-free weekend. We'll just have to see how that plays out.
As I arrived at the ER on Wednesday night, I found out from Kevin that his remaining Grandpa, "gramps", Leonard Weberling, had just lost his long standing battle with Prostate Cancer. Gramps was just about the coolest sweetest oldster you could meet. He was the town barber in Snohomish Washington all his life, and then started a small barber shop in his retirement in Desert Aire, WA and worked late into this summer. We are so happy that 3 of us got to see him once again this summer. Gramps gave Hans his first ever haircut back in 2006. He was proud to get to do that special job of taming the unmanageable blond curls of his great grandson! I'm just kind of a hippie about hair and I hated to cut his golden curls. My laptop is down right now, or I'd post some pictures of our fun adventure.
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