Whether we like it or not, We are where we need to be today. Hans has had quite a couple of days. That ICE really caught up with him. Hans has been admitted and he not only received platelets and blood (thanks again, donors!) he had a Nasty reaction to the platelets. He broke out in hives all over. It was a mess. He had been bleeding out the nose all day from low platelets, then the hives, then a number of bruises all over his little body with such low platelets. He has big bruises just from where he scratched his hives. A couple of days where we really feel like we are back in the trenches. Gosh. Just stinks when we've been literally counting down the days to Halloween since at least August. We had ordered Kevin a costume to match Hans unknown phantom, we'd picked Honey up a bat man costume, and Elle was all set as a flapper. Oh well. We are where we need to be, like it or not. Hans has continued to have fevers as high as 103.3 just now.. There is good news, there is a silver lining. The lymph nodes feel noticeably, significant smaller on both sides. It is incredible. How strange it is to have this visible, palpable disease. We could watch it grow before our eyes from the size of a lentil to the size of a golfball. Now we are watching it melt away. It's more like a gum ball now. Wonderful! With any luck and hope we won't have to do many more rounds of this ICE and we'll have him back on a much more reasonable, manageable, less harsh therapy!
Tonight we are ignoring Halloween...and cozying in for a night of burgers and fries with Aimee and kev and Elle. Sooo sweet that they are all here to pretend it isnt Halloween along with me and Hans. There is plenty of candy though, of course.
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.
Monday, October 31, 2011
Sunday, October 30, 2011
Back in'jail'
We were probably counting our blessings to be home for seven nights. But a lowgrade fever and a bloody nose bought us a night at chla. We r in the ER now. Platelets are 5. ANC is 180:( I hope to do some fast talking and break us outta here tomorrow for some trick or treatin! We shall see. Hans is getting anti bs now and is about to get platelets. He needs them, that's for sure! Thank you to those who donate blood and platelets. That's a special lifesaving gift. Thank you. You can imagine how we feel to be here, the night before Halloween. Hans calls it jail or prison. I just hope that the chemo is doing the same number on the tumor that it's doing to the counts. Until Nov 10th I'm pasting this message up, again and again. Other NB kiddos can open their own parks up as well. It's a new program...just now up and running:).
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of it!
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of it!
Friday, October 28, 2011
Stem Cell Harvest Breakdown
Hans is still at home, hanging in there. Yay! His HGB was 12.8, ANC 640 and plts 35 when we were at clinic Wednesday. He is getting "hot hands" which is sometimes I think the first sign of a fever, but sometimes not! We are crossing our fingers and hoping and praying we get away with a full Halloween Weekend at home! He is trying to eat, eat, eat and pack on some of the five plus pounds he lost during his last inpatient stint. It's a little tricky with one big mouth sore from the chemo:(
So the onc went over the next two weeks with me. We are going to "try" to collect stem cells next week. This is a big deal. We harvested stem cells back in November of 2006, but haven't attempted them since. (Stem cell harvest works best after some pretty hard chemotherapy agents.) We have one small bag of stem cells left, but it's not really enough for a full rescue. When kids get a hard core therapy such as MIBG or really high dose chemo, they sometimes need their own cells back as a rescue. If kids don't have stem cells in the bank they aren't eligible for certain treatments. Stem cells are liquid gold. They give these kids options. So, we want to collect the cells for possible future use! We are going to start injections of Neupogen shots all weekend and then we'll start going to CHLA on Tuesday. This is how it works. You go in EARLY each morning, like 6 or 7am, under the presumption that you could be going into surgery each day. The first thing they do is check his labs. He has to have an indicator that his stem cells are mobilizing - the CD34 number we are looking for is at least 7 to 10. Our Doc isn't at all certain Hans' cells are going to get there - due to the total amount of treatment he has seen over the past 5 years. If the number is too low on Tuesday, we'll go up to clinic and get a special injection of a medication called Mozobil. I think this is a new cell growth stimulant. We keep coming back each day until we hit the magic number of 7 to 10.
If/when we hit it, we go into surgery and have a pherisis placed in his groin/thigh. This is a special (big) line for the stem cell harvest. Then - it's up to the day hospital where his blood is filtered through a special machine and stem cells are magically filtered out, and the rest of his blood goes back to him. Kids also usually get a blood transfusion, they get Calcium and are at risk for Potassium dips. If we get enough cells on day one, we are done and the line comes out, if not, we are back the next day for more, and maybe the day after that... This is a rough, rough process. I talked to a mom back in Texas who had the opportunity to donate stem cells to her daughter (a different diagnosis) and she described it from her perspective. She said, it's awful. You just cry. You don't know why you are crying but you just cry. It is just that draining and exhausting.
That's what we're hoping for, it can go wrong at every step of the way... even if we go in and try to collect, we may not get enough cells for even one rescue. BUT, our wonderful doc says she has a good feeling about it. We will try. And I love her even more for trying! She did say that if it doesn't work this time, there won't really be a reason to try it again later.
Then, the following Wednesday we'll get a quick CT of the neck and have a meeting after. If the lymph nodes are stable or smaller (and if Hans makes counts), we'll do another round of ICE, if not, it's back to the drawing board. That's as far as we've got mapped out.
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of that growing number!!!
So the onc went over the next two weeks with me. We are going to "try" to collect stem cells next week. This is a big deal. We harvested stem cells back in November of 2006, but haven't attempted them since. (Stem cell harvest works best after some pretty hard chemotherapy agents.) We have one small bag of stem cells left, but it's not really enough for a full rescue. When kids get a hard core therapy such as MIBG or really high dose chemo, they sometimes need their own cells back as a rescue. If kids don't have stem cells in the bank they aren't eligible for certain treatments. Stem cells are liquid gold. They give these kids options. So, we want to collect the cells for possible future use! We are going to start injections of Neupogen shots all weekend and then we'll start going to CHLA on Tuesday. This is how it works. You go in EARLY each morning, like 6 or 7am, under the presumption that you could be going into surgery each day. The first thing they do is check his labs. He has to have an indicator that his stem cells are mobilizing - the CD34 number we are looking for is at least 7 to 10. Our Doc isn't at all certain Hans' cells are going to get there - due to the total amount of treatment he has seen over the past 5 years. If the number is too low on Tuesday, we'll go up to clinic and get a special injection of a medication called Mozobil. I think this is a new cell growth stimulant. We keep coming back each day until we hit the magic number of 7 to 10.
If/when we hit it, we go into surgery and have a pherisis placed in his groin/thigh. This is a special (big) line for the stem cell harvest. Then - it's up to the day hospital where his blood is filtered through a special machine and stem cells are magically filtered out, and the rest of his blood goes back to him. Kids also usually get a blood transfusion, they get Calcium and are at risk for Potassium dips. If we get enough cells on day one, we are done and the line comes out, if not, we are back the next day for more, and maybe the day after that... This is a rough, rough process. I talked to a mom back in Texas who had the opportunity to donate stem cells to her daughter (a different diagnosis) and she described it from her perspective. She said, it's awful. You just cry. You don't know why you are crying but you just cry. It is just that draining and exhausting.
That's what we're hoping for, it can go wrong at every step of the way... even if we go in and try to collect, we may not get enough cells for even one rescue. BUT, our wonderful doc says she has a good feeling about it. We will try. And I love her even more for trying! She did say that if it doesn't work this time, there won't really be a reason to try it again later.
Then, the following Wednesday we'll get a quick CT of the neck and have a meeting after. If the lymph nodes are stable or smaller (and if Hans makes counts), we'll do another round of ICE, if not, it's back to the drawing board. That's as far as we've got mapped out.
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of that growing number!!!
Wednesday, October 26, 2011
Hi,
Wow - I have to say we're touched by Hans' Five Year Campaign Kick Off. I love it! Each little tribute makes me tear up a little bit! THANK YOU, if you haven't visited his site yet, please check it out here: http://www.cncfparks.org/help-a-child/park/21/ It's amazing to me. I have a 'secret' goal, and it looks like we'll get there!
For the next two weeks there's another way to donate to the CNCF in Hans' honor - by checking off a few items on your Christmas list! Hans' Godmama Roxie operates 'Scarf it up Santa Cruz' and she's decided to donate 15% of her jewelry and necklace scarf sales to the CNCF in Hans' honor from this weekend's crafts fair, and from her Internet sales for the next two weeks. www.scarfitupsantacruz.com
You can find her craft fair this weekend at:
From Pumpkins to Presents Gift Fair Saturday, October 29, 10am-3pm Cypress Community Church: 681 Monterey-Salinas Hwy., Salinas CA
Hans had an Office Visit today and didn't need blood! There's more to report from the OV, but I'll save it - I've gone on and on.
Thanks for checking up on us and thanks for contributing to Hans' 'Five Year Campaign!'
I also must thank aunt Susy for her Halloween artsy care package that kept us busy in the hosp, and Tracy for her special HEB care package. Leave it to Hans to miss the HEB (Texas grocery store) line of chicken noodle soups and kids shampoo and body wash, and leave it to Tracy to fill his order!
Wow - I have to say we're touched by Hans' Five Year Campaign Kick Off. I love it! Each little tribute makes me tear up a little bit! THANK YOU, if you haven't visited his site yet, please check it out here: http://www.cncfparks.org/help-a-child/park/21/ It's amazing to me. I have a 'secret' goal, and it looks like we'll get there!
For the next two weeks there's another way to donate to the CNCF in Hans' honor - by checking off a few items on your Christmas list! Hans' Godmama Roxie operates 'Scarf it up Santa Cruz' and she's decided to donate 15% of her jewelry and necklace scarf sales to the CNCF in Hans' honor from this weekend's crafts fair, and from her Internet sales for the next two weeks. www.scarfitupsantacruz.com
You can find her craft fair this weekend at:
From Pumpkins to Presents Gift Fair Saturday, October 29, 10am-3pm Cypress Community Church: 681 Monterey-Salinas Hwy., Salinas CA
Hans had an Office Visit today and didn't need blood! There's more to report from the OV, but I'll save it - I've gone on and on.
Thanks for checking up on us and thanks for contributing to Hans' 'Five Year Campaign!'
I also must thank aunt Susy for her Halloween artsy care package that kept us busy in the hosp, and Tracy for her special HEB care package. Leave it to Hans to miss the HEB (Texas grocery store) line of chicken noodle soups and kids shampoo and body wash, and leave it to Tracy to fill his order!
Tuesday, October 25, 2011
Five Year Campaign
Dear Friends and Family,
I am writing this note to mark Hans’ 5 year anniversary of his diagnosis: Stage IV High-Risk Neuroblastoma, 10/25/2011. In these 1,825 days Hans has had HUGE obstacles to surmount. Hans has not had one single day “off treatment”. It is quite remarkable that he has survived his disease and his treatments to this point. When Hans first relapsed in May of 2008, we were loosely told to expect about 8 more months with our boy. “Take a lot of pictures and go to Disneyworld.”
Hans didn’t give up and neither will we. We have kept him afloat by seeking out innovative doctors and novel therapies. Hans has endured 58 rounds of chemotherapy, 2 major resection surgeries, a stem cell transplant, three separate courses of directed radiation, experimental radiation therapy, he has participated in two clinical trials, and hopes to be eligible for another soon. Hans has suffered debilitating side effects including the loss of both adrenal glands and delayed bone growth. He has not been able to play on a soccer team or spend a solid month in a classroom since his diagnosis. As I type this, he has been in the midst of a rough progression of disease since summer. It is now moving through his lymph nodes and we are throwing big guns chemo at it in hopes of beating it down once again.
And yet, these past five years have brought love and joy into our hearts many times over. I’m sure we’ve been showered with 10,000 hugs and kisses from our boy in these years. We’ve found joy in loving each other, our family, friends and our pets in the best way we can, every day. We live in the hope that Hans will get to see the day he can be cured from his NB. As you know, that cure is yet to be discovered, research alone will unlock that mystery.
Since our son’s fateful diagnosis we’ve seen our friends, family and community come together with two incredible tasks. As a family, we were supported by the Run for Hans, Sparrows for Hans, and a near 1 million-mile airline miles drive. We’ve always paid it forward and have tried to outmatch the support we have received in contributions for research and education. While in Houston, we worked hard with a group of NB parents and our good friends to establish bake sales, lanyard sales and yard sales which have brought in more than $100,000 for the Children’s Neuroblastoma Cancer Foundation to date. In this economy research funding is dwindling from the federal government and corporate donors. Increasingly, it is parent-led efforts that fund life-saving research. We are tasked with asking you and motivating you to donate.
I feel we are on the cusp of great change in the treatment of NB. I believe an exciting zeitgeist is building as researchers around the country and the world attack the problem of this devastating disease from every conceivable angle. Doctors in New York are developing nanotechnology to target NB therapies, doctors in Michigan are making personalized medicine headlines by targeting therapies specific to the genetic makeup of each child’s NB tumor. A child with NB was the first human child to receive an Oncolytic virus in hopes of obliterating this disease. Doctors in Boston are rolling out a legitimate attempt at a vaccine to prevent Neuroblastoma relapse. We are making new ground as immunotherapy has become the standard of care not only in frontline therapy, but a brand new trial is opening in Philly this month for children navigating the landscape of relapse as well. Our oncologist in LA is working on opening more immunotherapy trials for relapsed kiddos soon. With all these improvements coming from different sources, I can feel that a cure could be at our fingertips.
Please honor Hans and his valiant fight against Neuroblastoma by making a donation to the CNCF today, copy/paste this link to Hans' CNCF Gifts of Hope Fundraising Site. http://www.cncfparks.org/help-a-child/park/21/ Any contribution is wonderful, even $5. It just feels good to see the names of his supporters go up on his site. It’s evidence that his story has moved you and that so many people still care. Thank you for making our dream (having a boy that simply gets to grow up) a reality. Your donation is tax deductible. Feel free to share this letter with others who have been moved by Hans’ journey.
With great Love and Hope,
Lara, Kevin, Elle and Hans Weberling
Monday, October 24, 2011
Hello From Home
Hi -
Just a quick note to say that we are home! We are feeding and feeding Hans and making him drink and drink and drink -hoping to protect his bladder - flooding him with iced water, Cranberry Raspberry juice and even Mt. Dew! Hans is a little fragile looking. He hasn't been weighed lately, but he looks to be down about 5 lbs from that last round. Kevin is working on getting the floors done in his favorite hang out room - that's something to look forward to. Hans got to take Honey on a quick bike ride/walk last night. So great! He actually even had a quick school lesson today from his new teacher, Mrs. James. This has actually been his third session in as many weeks, I've just failed to mention that he got started with all the other excitement.
Grandma Stephanie and Uncle Dean hit the road to LAX to get back up to Seattle today.
Hans goes back in for labs and an Office Visit Wednesday. He is also slotted for a possible blood transfusion. We shall see. I'm excited and even a little freaked out to say that he is slotted for a stem cell harvest on 11/01 and 11/02! Wow. Anyone who has been through it knows what a trying experience it is. It just WIPES YOU OUT, but at the end of two days, you could have these little bags of gold that could rescue you from the most risky treatments!
Tomorrow will mark Hans' 5 year anniversary of this awful diagnosis. So, tomorrow, I'm going to give you an opportunity to make a donation to the CNCF in Hans' honor. I'll share a letter with you tomorrow, and a link to Hans' new CNCF Parks fundraising page. I'm excited about just a little bit of good being generated from our rough situation.
Our dear friend Roxie is going to do a neat fundraiser as well. She's going to contribute a special percentage of sales from her "Scarf it up Santa Cruz" Sales to mark Hans' anniversary. More on that in a couple of days. You could get a jump start on your Christmas list and help fund a cure.
I'd like to say thanks to our special Lego Fairy from the north! Megan, Republic Frigate is amazing!!!! xoxox
Just a quick note to say that we are home! We are feeding and feeding Hans and making him drink and drink and drink -hoping to protect his bladder - flooding him with iced water, Cranberry Raspberry juice and even Mt. Dew! Hans is a little fragile looking. He hasn't been weighed lately, but he looks to be down about 5 lbs from that last round. Kevin is working on getting the floors done in his favorite hang out room - that's something to look forward to. Hans got to take Honey on a quick bike ride/walk last night. So great! He actually even had a quick school lesson today from his new teacher, Mrs. James. This has actually been his third session in as many weeks, I've just failed to mention that he got started with all the other excitement.
Grandma Stephanie and Uncle Dean hit the road to LAX to get back up to Seattle today.
Hans goes back in for labs and an Office Visit Wednesday. He is also slotted for a possible blood transfusion. We shall see. I'm excited and even a little freaked out to say that he is slotted for a stem cell harvest on 11/01 and 11/02! Wow. Anyone who has been through it knows what a trying experience it is. It just WIPES YOU OUT, but at the end of two days, you could have these little bags of gold that could rescue you from the most risky treatments!
Tomorrow will mark Hans' 5 year anniversary of this awful diagnosis. So, tomorrow, I'm going to give you an opportunity to make a donation to the CNCF in Hans' honor. I'll share a letter with you tomorrow, and a link to Hans' new CNCF Parks fundraising page. I'm excited about just a little bit of good being generated from our rough situation.
Our dear friend Roxie is going to do a neat fundraiser as well. She's going to contribute a special percentage of sales from her "Scarf it up Santa Cruz" Sales to mark Hans' anniversary. More on that in a couple of days. You could get a jump start on your Christmas list and help fund a cure.
I'd like to say thanks to our special Lego Fairy from the north! Megan, Republic Frigate is amazing!!!! xoxox
Sunday, October 23, 2011
One more Disneyland Pic
Hi,
I had to post this pic of my uncle dean and I on that same roller coaster. Fun!
We are about to get discharged. Now the goal will be to stay home as much as possible. We'll see how that goes. ICE has a way of knocking kids counts down and making way for fever, rehospitalization, transfusions. UGH. We'll see what happens. Hans is soooo ready to go home and to eat his home food (spaghetti tacos ala iCarly, Costco rotisserie chicken, cheese dip, etc)! I think I got it mixed up the other day, the right side that they biopsied is much improved, and the left side doesn't seem to be much smaller. The chemo can keep working after it infuses though, so here's hoping and praying.
Thanks for checking up on us.
Saturday, October 22, 2011
Day 5
We had a big fun day at Disneyland. Hans was doing well and hanging out with his daddy...with special drop ins from Roxie and Aimee, so I felt okay about heading out to Disneyland for the day. It was so fun to see Elle and Claire and Dean enjoying the park! Elle has just started riding the big rides, but as you can tell from her classic pic, above, that she finds them terrifying!
Hans did great yesterday and last night but this morning he has had a headache:( There are 600 reasons for headache, so I am not freaking out about it at this point. He did have to take a little dose of IV Morphine when the Oxy wasn't cutting it! I'm hoping that this just goes and doesn't come back. Last night of the ICE chemo tonight. We honestly don't know how many rounds we are doing of this chemo. We will see how he does and we will see if we can collect some stems cells. Our wonderful doc is setting us up with some home health to come for labs! When Hans heard that he started laughing out loud! Like he was getting away with something! I think he also actually shed a tiny tear. This is a kid that has spent too many days in the hosptial... by my count he's spent at least 45 out of the last 90 days inpatient:( He has had a bit of a rough time with that. He has been saying "I'm just tired of being here. I miss taking Honey on a walk."
We hope to get discharged tomorrow. BUT, we're well aware that pain, fever or some other negative effects could detain him. We are hoping that is NOT the case.
Thursday, October 20, 2011
Day 3
"Listen to the Mustn'ts,child,
Listen to the Don'ts
Listen to the Shouldn'ts
The Impossibles, the Won'ts
Listen to the Never Haves,
Then listen close to me --
Anything can happen, child,
Anything can be.."
- Shel Silverstein
I'm thankful to my parents not only for teaching me how to love unconditionally, but for keeping me in Shel Silverstein poems throughout my childhood. I'm sure these poems are partially responsible for parts of my personality and my outlook on life. This is a poem I am thinking of often and fondly as I try not to gaze too frequently at Hans' bulging lymph nodes. It appears the left side is improving, the right side, not so much. We will give it time.
Happy to say that last night Hans did even better than the night before. We were prepared for the number of potty wake-ups, and that was the big deal. Dr. Marachelian is giving Hans a whopping dose of decadron that not only covers his adrenal insufficiency but protects him against nausea. Hans says that it's smart to run it over night so he doesn't get sick during the day.
Our cup runneth over with visitors and love. Grandma Kathy flew home this week - thanks for coming! And Roxie has been here. I'm going to have to get her a cute driving cap and gloves for all her chauffeuring. She has been taking on the Popeye's and Taco Bell runs that are usually Aimee's domain, and she's fetching the grandmas to and from the airports of LA. Tonight we'll have my mom and Uncle Dean join us, and Kevin, Elle and Claire will come down from Bakersfield. It's hopping. We're planning for a field trip to Disneyland tomorrow, just not sure how many are going. Hans is okay with missing out on the outing. He's holding out for the Nick Hotel in Orlando. Do I have the only kid who could pass on Disney??
Listen to the Don'ts
Listen to the Shouldn'ts
The Impossibles, the Won'ts
Listen to the Never Haves,
Then listen close to me --
Anything can happen, child,
Anything can be.."
- Shel Silverstein
I'm thankful to my parents not only for teaching me how to love unconditionally, but for keeping me in Shel Silverstein poems throughout my childhood. I'm sure these poems are partially responsible for parts of my personality and my outlook on life. This is a poem I am thinking of often and fondly as I try not to gaze too frequently at Hans' bulging lymph nodes. It appears the left side is improving, the right side, not so much. We will give it time.
Happy to say that last night Hans did even better than the night before. We were prepared for the number of potty wake-ups, and that was the big deal. Dr. Marachelian is giving Hans a whopping dose of decadron that not only covers his adrenal insufficiency but protects him against nausea. Hans says that it's smart to run it over night so he doesn't get sick during the day.
Our cup runneth over with visitors and love. Grandma Kathy flew home this week - thanks for coming! And Roxie has been here. I'm going to have to get her a cute driving cap and gloves for all her chauffeuring. She has been taking on the Popeye's and Taco Bell runs that are usually Aimee's domain, and she's fetching the grandmas to and from the airports of LA. Tonight we'll have my mom and Uncle Dean join us, and Kevin, Elle and Claire will come down from Bakersfield. It's hopping. We're planning for a field trip to Disneyland tomorrow, just not sure how many are going. Hans is okay with missing out on the outing. He's holding out for the Nick Hotel in Orlando. Do I have the only kid who could pass on Disney??
Wednesday, October 19, 2011
Day 2
Hans did fine through the first night of his chemo. The ICE combo includes: Ifosfomide, Carboplatin, and Etoposide. One of these chemos can be harmful to the bladder, so we are making sure that Hans gets lots of fluids and that his urine isn't very concentrated. He is also getting a drug called Mesna around the clock to protect his bladder. There is a lot of action and excitement in here, the chemos each run one hour, they are followed by a flush and they have to check his vitals frequently, like five times in an hour during the Etoposide, all over the middle of the night. That kind of excitement. He didn't get sick, he actually said, "This magic water isn't so bad!" We'll take it one day at a time and be thankful that today is a good day. He had one problem - - wasting glucose in the urine, which bought him finger sticks all day long. The worst of it was all the interruptions and having to pee all the time throughout the night. His glucose has been fine ever since. He is also at risk for a little more hearing loss:( In optimistic news, our onc has suggested we try a second stem cell harvest after this round.
As for me, I am keenly aware that I have a glorious job in loving this boy. Ever since Hans was a new born baby, each time I hold him, I think 'this is what my arms are for.' I am glad I have these two arms. I am glad I have this boy to love. Kevin has the job of providing for him and spoiling him rotten which he does expertly. Elle has the job of treating like a completely normal brother... a sibling mix of teases, competition, play and love. We've got it pretty good.
As for me, I am keenly aware that I have a glorious job in loving this boy. Ever since Hans was a new born baby, each time I hold him, I think 'this is what my arms are for.' I am glad I have these two arms. I am glad I have this boy to love. Kevin has the job of providing for him and spoiling him rotten which he does expertly. Elle has the job of treating like a completely normal brother... a sibling mix of teases, competition, play and love. We've got it pretty good.
Tuesday, October 18, 2011
ICE
The news is not what we had hoped for. It seems Hans' little lymph nodes are just filled with Neuroblastoma. The right side seems to have stopped growing but the left side is getting bigger with disease.
Our oncologist got the official pathology today and worked up our options for us.
We have opted for a big guns chemo combo called ICE. ICE is a combo of three chemos that should hit Hans' system pretty hard and we hope the NB as well. He will start this chemo tonight.
It is a pretty somber night for me as I lay to rest my hopes of some treatable infection. We will switch gears and try to get a handle on this runaway train.
Oh, my baby. Please lift this little boy up in your prayers and lavish him with loving thoughts of successfully beating back the beast within him once again.
Our oncologist got the official pathology today and worked up our options for us.
We have opted for a big guns chemo combo called ICE. ICE is a combo of three chemos that should hit Hans' system pretty hard and we hope the NB as well. He will start this chemo tonight.
It is a pretty somber night for me as I lay to rest my hopes of some treatable infection. We will switch gears and try to get a handle on this runaway train.
Oh, my baby. Please lift this little boy up in your prayers and lavish him with loving thoughts of successfully beating back the beast within him once again.
Sunday, October 16, 2011
1254 pieces of fun
We are whiling away the hours with a 1254 piece Millennium Falcon lego set. UNfortunately it only helped him while away 24 hrs - he's too fast! We all say he needs a sponsor to support his Lego habit. You can see a little bit of his nice soft hair here, and the rim of the bald spot left from his summer radiaition treatment. They said it should grow back in but that it will take months:(
Hans seems to have recovered from the biopsy just fine. He is NOT complaining of pain anywhere, anymore. (I had wondered if the procedure itself would relieve pressure.) We are stepping down the Oxycodone hoping to wean. We have to wait until Monday for biopsy results.
Hans is just now starting to get an appetite. He hasn't really eaten much since Wednesday night. Five of us (Me, Kev, Elle, G'ma Kathy and Aimee) have been here this weekend keeping him company. Grandma dec'd out his room for Halloween. Us girls stayed at the Ronald last night:)
Thanks for checking up on Hans. I will post tomorrow night or Tuesday morning. We hope to have both biopsy results and a treatment plan!
Lara
Friday, October 14, 2011
biopsy today
I'm sorry to have kept you waiting...I just know how everyone worries
about these kids between posts. I know because I worry about all the
other kids between posts at these scary junctures! Hans has been on
iv antibiotics now almost 72 hours. He does seem to be getting a little
Better! He can move his head better and he is using the pain meds
and hot pad less frequently. Two of five viral tests have come back
negative. We are waiting on the rest. Hans will go into biopsy today.
The surgeon feels better about going in now that he has been on anti-
biotics for a few days. We hope to be able to identify whether it is
infection, nb or something else?? If it is nb we will have a sample
shipped to CHOP for Alk testing. The only new bad news is that Hans
did have one of his awful headaches this morning.,Gosh...poor kid:(
He also has to go NPO all day, as he is just an add on with no official
OR time slot of his own. I know there are 600 reasons for headaches so
I am doing my best to keep my fears at bay and remain my optimistic
Pollyana self about all this. Still hoping for the most treatable/resolvable
option to show up on that slide. All treatment decisions are pending
the biopsy findings and actually the treatments of those findings.
There is a big flow chart. Believe me. This kid will get some treatment
for the NB. And all sites are set for Monday. I'll post prior to Monday
if we get any conclusive results.
Meanwhile our little CA support system has sprung back into action.
Aimee is on food delivery and visiting, Claire and fam next door take in
Elle, and now G'ma Kathy has arrived for Elle duty. Kev and Elle and G'ma will
Join us here at CHLA soon, unless we can convince our team to try a weekend
discharge!. Roxie and my Mom and Uncle Dean come down next week... :)
about these kids between posts. I know because I worry about all the
other kids between posts at these scary junctures! Hans has been on
iv antibiotics now almost 72 hours. He does seem to be getting a little
Better! He can move his head better and he is using the pain meds
and hot pad less frequently. Two of five viral tests have come back
negative. We are waiting on the rest. Hans will go into biopsy today.
The surgeon feels better about going in now that he has been on anti-
biotics for a few days. We hope to be able to identify whether it is
infection, nb or something else?? If it is nb we will have a sample
shipped to CHOP for Alk testing. The only new bad news is that Hans
did have one of his awful headaches this morning.,Gosh...poor kid:(
He also has to go NPO all day, as he is just an add on with no official
OR time slot of his own. I know there are 600 reasons for headaches so
I am doing my best to keep my fears at bay and remain my optimistic
Pollyana self about all this. Still hoping for the most treatable/resolvable
option to show up on that slide. All treatment decisions are pending
the biopsy findings and actually the treatments of those findings.
There is a big flow chart. Believe me. This kid will get some treatment
for the NB. And all sites are set for Monday. I'll post prior to Monday
if we get any conclusive results.
Meanwhile our little CA support system has sprung back into action.
Aimee is on food delivery and visiting, Claire and fam next door take in
Elle, and now G'ma Kathy has arrived for Elle duty. Kev and Elle and G'ma will
Join us here at CHLA soon, unless we can convince our team to try a weekend
discharge!. Roxie and my Mom and Uncle Dean come down next week... :)
Tuesday, October 11, 2011
Admitted once again
The surgeon surprised us. We thought we'd be hearing yes/no to a possible biopsy and perhaps yes/no to a possible additional removal of affected lymph. BUT no, when Dr. Stein examined Hans he thought it was more suspicious for an infectious process than a tumor! I guess he thought it has just changed too quickly and is too painful and sensitive to be tumor. He mentioned a few tests he'd request. He and Dr. Marachelian consulted and he recommended we get admitted right away for IV antibiotics. Hans has rec'd the first dose of his thrice daily antibiotics. Infectious disease team has been summoned, but we've not seen them yet. How could this happen? Well, the PET and the CT showed something...the MIBG did not. Perhaps the something was an infection misinterpreted as tumor? Or, perhaps there is some necrotic tumor that has become infected???
I guess the plan is to see what happens with a day or two of antibiotics on board. He's not had fever and has had normal blood counts (still waiting on todays labs)... Dr. Marachelian said "I'm not ruling anything out!"
We shall see. I'm hoping it's the most treatable of the options. Elle freaks me out watching Myserty Diagnosis and I know there are some infections you wouldn't be wishing for.
Meanwhile, I'm glad I packed for days for a surgery consult!
Thanks for checking up on us. I'm hoping to be putting another entry into Hans' miracle chart.
I guess the plan is to see what happens with a day or two of antibiotics on board. He's not had fever and has had normal blood counts (still waiting on todays labs)... Dr. Marachelian said "I'm not ruling anything out!"
We shall see. I'm hoping it's the most treatable of the options. Elle freaks me out watching Myserty Diagnosis and I know there are some infections you wouldn't be wishing for.
Meanwhile, I'm glad I packed for days for a surgery consult!
Thanks for checking up on us. I'm hoping to be putting another entry into Hans' miracle chart.
Monday, October 10, 2011
Made it through the weekend at home
Hans' neck has sure been bothering him. The lymph nodes are enlarged, and they do light up with NB on the PET and I think the CT. It is scary how things have changed just since Wednesday. He is now in pain, using a hot pack or ice pack and Oxycodone around the clock. He has somewhat limited mobility. He can hardly turn his head or lift his arm on the right side. By Friday night we were thinking we wouldn't last the weekend at home, but we did. We have a surgery consult tomorrow first thing in the morning. We are simply anxious that he get on the new plan, and we're hoping that we and the docs are led to the next perfect move for him. Our options remain - - nothing has been finalized.
If ever there was a time for prayer of the next perfect plan for him, this is it. To me, it seems like it's crucial to get this next choice right. Hans has always bounced back and responded before, but I find my self asking "How many miracles are we afforded?" Roxie says, "You can't count them, miracles are limitless!"
The rest of us are hanging in there. Elle is enjoying her soccer team, she's playing "recreational" this season so we actually get a bit of a break from the schedule, travel and the pressure of competitive soccer - it's more all about fun and exercise - which is good. She even got a hat trick (+1) last weekend - scoring FOUR goals! It was exciting:) She's getting adjusted to life at the new school just fine.
Kevin LOVES his job and his worklife here - it is truly living the good life to be a California Geologist! I wake up each day and I figure my first job is to do whatever it takes that day to beat the NB. The rest of life has to come second right now. The weather here is gorgeous so we've been enjoying our walks, bike rides and park time! I was obsessed this weekend with a few things, getting b'day cards, presents ordered and in the mail, getting Elle a winter coat, getting her Halloween costume ordered. I feel like, I'm home now. I can do this now... let's get it done. Even going into something like a surgery consult in the morning, you just don't know what will come up and whether you'll get "detained" and when you'll make it home. I could be home tomorrow night, or 17 nights for all I know! I'm packing for a few days;) We are so lucky to have the neighbors on constant call for our girl!
Thanks for checking up on us and thanks for your thoughts and prayers for our gorgeous boy. I'll keep you posted once we nail down a plan.
Lara
PS - Hans' 5 year anniversary of diagnosis is coming up. I plan to do a CNCF fundraising email/blogger/facebook campaign. I could use a boost, and seeing all the names that are rallied around Hans, while bringing in crucial research and education dollars, will surely help!
If ever there was a time for prayer of the next perfect plan for him, this is it. To me, it seems like it's crucial to get this next choice right. Hans has always bounced back and responded before, but I find my self asking "How many miracles are we afforded?" Roxie says, "You can't count them, miracles are limitless!"
The rest of us are hanging in there. Elle is enjoying her soccer team, she's playing "recreational" this season so we actually get a bit of a break from the schedule, travel and the pressure of competitive soccer - it's more all about fun and exercise - which is good. She even got a hat trick (+1) last weekend - scoring FOUR goals! It was exciting:) She's getting adjusted to life at the new school just fine.
Kevin LOVES his job and his worklife here - it is truly living the good life to be a California Geologist! I wake up each day and I figure my first job is to do whatever it takes that day to beat the NB. The rest of life has to come second right now. The weather here is gorgeous so we've been enjoying our walks, bike rides and park time! I was obsessed this weekend with a few things, getting b'day cards, presents ordered and in the mail, getting Elle a winter coat, getting her Halloween costume ordered. I feel like, I'm home now. I can do this now... let's get it done. Even going into something like a surgery consult in the morning, you just don't know what will come up and whether you'll get "detained" and when you'll make it home. I could be home tomorrow night, or 17 nights for all I know! I'm packing for a few days;) We are so lucky to have the neighbors on constant call for our girl!
Thanks for checking up on us and thanks for your thoughts and prayers for our gorgeous boy. I'll keep you posted once we nail down a plan.
Lara
PS - Hans' 5 year anniversary of diagnosis is coming up. I plan to do a CNCF fundraising email/blogger/facebook campaign. I could use a boost, and seeing all the names that are rallied around Hans, while bringing in crucial research and education dollars, will surely help!
Wednesday, October 05, 2011
MIBG, MRI done, CT tomorrow
We've been down in LA for two days. (Thanks for the hospitality Aimee!)
Hans has had an MRI, labs and an MIBG scan. We'll go back tomorrow for a CT scan too.
We've got some pretty good news. Stable bony disease in about three spots, spine, pelvis and head with great improvement to the head from the midsummer scans. We are concerned about some very bulgy lymph nodes at the neck that are suspicious for disease.
We'll be moving off Irinotecan/Temodor, not because Hans progressed on it, but because it wasn't doing enough.
We are debating our options. We are looking at some of the NANT trials and are strongly considering an antibody/immunotherapy.
We have about a week and a half to make our decision. Hans will possibly have a BIOPSY of the lymph nodes on Monday. We are considering some other options like radiating the spine. Unfortunately, you can't often use radiation while on a trial.
We're working on all of that.
Ultimately we are thankful that we didn't get bad news today. We are thankful that Hans still has "a lot" of options.
Hans is looking forward to some good family time. Grandma Kathy is coming down next week:)
Hans has had an MRI, labs and an MIBG scan. We'll go back tomorrow for a CT scan too.
We've got some pretty good news. Stable bony disease in about three spots, spine, pelvis and head with great improvement to the head from the midsummer scans. We are concerned about some very bulgy lymph nodes at the neck that are suspicious for disease.
We'll be moving off Irinotecan/Temodor, not because Hans progressed on it, but because it wasn't doing enough.
We are debating our options. We are looking at some of the NANT trials and are strongly considering an antibody/immunotherapy.
We have about a week and a half to make our decision. Hans will possibly have a BIOPSY of the lymph nodes on Monday. We are considering some other options like radiating the spine. Unfortunately, you can't often use radiation while on a trial.
We're working on all of that.
Ultimately we are thankful that we didn't get bad news today. We are thankful that Hans still has "a lot" of options.
Hans is looking forward to some good family time. Grandma Kathy is coming down next week:)
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