Long 5 Days

Check out this thought provoking lil speech by an NB survivor, I just did and I think I needed to hear this tonight! Thanks, Tash!

We are having a calm and pleasant time at home since discharge, but a few of Hans' mystery symptoms are making these five days excruciating.

Right now, we are just hoping that they are able to book him for an MRI early this week. We need to get that done to inform Wednesday's meeting. You never know how a new hospital operates, but I had heard that one of three MRI machines is down and that appointments are scarce and hard to come by.

I wanted to put up a quick post to let you know that we are still at home and "okay", however loosely we are defining that these days. In truth we are pretty worried about our little guy and are anxious to have a plan to take care of him.

Thanks for checking up on us, Lara

Change of Plans...

Hans is starting to perk up! Getting a few dark eyebrows too:)

So, yesterday was a rough day. We kept looking at Hans and having huge anxiety about his capability to enroll on a trial all the way across the country, that would require him to travel not once, but five times in the next four weeks, either that or stay for a month in Philly. Our doctors helped guide us and advise us that it's not in Hans' best interest to go that route at this time. Maybe the universe or the hand of God is leading Hans away from this option for a good reason. It's important for me to restate that it's not Hans disease burden that seems to be getting him down right now. It's some virus or infection that we've been unable to label. I keep repeating to myself Dr. Marachelian's proclamation after reviewing his scans..."He has a TINY amount of disease!"

For now, we are gonna stay put and get treated in our new home state. That'll be a change up. Hans is looking forward to it! We hope to get discharged from CHLA today. Hans has continued to have his headaches, but his Sodium came up, and he actually needed a bag of blood yesterday. The fluids has has received all week have likely diluted his red blood count...

We are going to go home and enjoy our weekend of just being at home! And, then, on Wednesday we'll come back to LA and finally knock out a treatment plan with Dr. Marachelian. I have also heard they might do an MRI of Hans' head, which I'm sure will make me quite nervous ! We have three top options already lined out, and we'll discuss those and more next week.

The upside of this inpatient stint was finding a gem of an Endocrinologist to follow Hans here. I couldn't be more thankful. She is adjusting Hans' two steroids and she believes it is possible to help Hans avoid getting sick this often by proper steroid replacement. Without any adrenal glands, he just gets beaten into the ground when he is sick. Our new Endocrinologist is already trying to think preventative dosing... it's a very good find for us here!!!

Thanks for your thoughts and prayers for Hans. He really looks okay this morning. He is up and eating a little, watching his shows, talking about what he hopes to have for lunch on his way home---chicken! I guess now we just pray that the best possible treatment plan will fall into place for our boy!

More... Fever! Headaches! Inpatient! Again!

OH boy.... what a mystery this kid is this summer. We had a great day on Sunday AND THEN... Sunday night Hans started to have some pain in his HEAD. YIKES! There were bumps on the top of his head, causing him pain enough to take Tylenol w/ Codeine. Kevin and I were up for hours worrying about what that might mean. Monday Hans slept all day on and off while Keiran chilled and I made an attempt at picking up our place, doing laundry, etc etc. I was waiting all day long for the thumbs up from CHOP. AND THEN... at about 4:30 he told me to take his temperature... 102.6! OMG - did I fall apart. Here we had poor Keiran, we're waiting to hop on a plane to start a trial and now this.

So, off to CHLA. I left Keiran with Kevin in Bakersfield and hit the highway to LA. We spent all night in the ER, and then were discharged and released to Aimee's. Come morning he started brewing another 102.0 temp. At the same time I found out they were ready for us at CHOP. Kev had sent Keiran off on an early flight! Poor kiddo - he was sure a good sport about his shortened vacay.

Anyway, we reported to urgent care in the clinic where he continued to have fever and we were admitted. Mysteriously and wonderfully, those bumps on his HEAD went away and stopped hurting. Can you believe that???

Now the 'plan' is: Get Hans cleared for air travel, get to Philly on Sunday, RE SCAN (just found this out: need to re-test marrows and MIBG) and start the trial Tuesday.

Some of our sweet friends have asked us what to pray for. Oh, that is a good question! At some points during this month I've only been able to utter the little prayer "God help us." But I think that Hans is actually just fighting some virus or infection. He actually has a very light disease burden!!!! He just needs to get better and get on a treatment plan.
If you are moved to say a little prayer for Hans, please ask that he gets well enough to get home for a couple of days, stays healthy for a safe flight to Philly on Sunday, that his MIBG scan shows no progression from the 7/14 scan, and that if there really is NB in the marrow that they catch a sample of it so that we can test it for the ALK mutation, and ultimately, that he can start the ALK trial and that it starts working a little miracle soon.

Now, is that too much to ask for??? I absoluetly think not!

Hollywood and Highland

Kevin had a good fast trip to Seattle for some important family time at his grandma's service. I was soooo glad that he and Elle were able to attend. He needed a lift home from the airport today, so after another trip to LAX, we squeezed in a fun stop at Hollywood and Highland, the Walk of Fame, and a nice lunch.

Hans is feeling pretty okay I think. I forgot to mention that we have our pal Keiran with us this week! This plan had long been in the works, to bring Keir back with us from this past Philly trip to keep Hans occupied while Elle was off at camp, we just bumped his trip back along with ours.

We are having fun. I just need to pace our day so that we don't try to do too much. A lot of downtime and relaxing time is pretty much always key for a happy healthy Hans. (Thanks, Aimee for the guided tour).

Going Back to Cali

We learned yesterday that the new arm of this trial will not start today as hoped. There is basically a paperwork gridlock/logjam. Every i needs to be dotted and t needs to be crossed before all numbers are crunched and the new phase is approved. I guess some of the data still needs to be submitted before the data can be analyzed. That's what I get out of it, anyway.

We have been advised to catch a flight and have a nice long weekend at home. We hope to get a call Monday, telling us to come back out to start Wednesday. For the time being...I'm okay with it. As long as Hans starts a trial by Wednesday of next week, he won't need to be rescanned. If we go beyond that point we are looking at Plan B, C or D...

Hans is really going with the flow here. He is looking forward to getting back into town to see his dog, swim in his pool and hit our two favorite chicken restaurants...Popeye's and El Pollo Loco. We won't have Kevin til Sunday. He is flying out to Seattle today to attend his Grandma Lorraine's memorial. Elle gets out of camp today. My mom will pick her and Greta up from their special week at Camp Robbinswold on the Hood Canal. I went there as a girl too. It's gorgeous and beautiful! I can't wait to talk to her on the phone! I'm also ready to skip out on this East Coast heat wave. I'm sure it's gonna be hot in Bakersfield, though.

Thanks for checking up on us.

Love, Lara

Hans and the "ALK" Trial

More news and a recap. I may have misled most of you with last night's post, although Hans' CT scan was clear, it doesn't negate or override the progression noted on the MIBG scan. Hans is still considered to have progressed on Millennium, so now is the time to Change Up. We got more wonderful news today that Hans' bone marrow sample was negative for NB. Whoa, we didn't see that coming, bone marrow biopsies can be hit or miss. We'll probably never know if we just missed sampling some tumor in there. We have consented to sign onto the ALK trial at CHOP.

Here's the scoop. There has been a lot of buzz and excitement about a trial widely known as the "ALK Trial" which takes advantage of a certain genetic mutation present in some Neuroblastomas. If the mutation is there, the drug tends to work well, if the genetic expression is not there, the drug has still been shown to work in a smaller percentage of patients. The drug can"block or inhibit two proteins called c-met and Alk. These proteins may be important in the growth of certain types of cancer cells. " (taken from the patient consent form)

To this point we haven't been able to determine if Hans has this genetic experssion. Why? First off, because when Hans was first diagnosed back in 2006, researchers weren't even yet aware of this genetic link. Our team stored samples of the tumor from the inital biopsy. However, those samples were routinely stored in paraffin wax at that time, rather than frozen. By Hans' 2009 relapse, Dr. Mosse here at CHOP had discovered this genetic link! At that time we had a tissue sample of Hans' initial biopsy sent to CHOP for testing. They were unable to use the sample to run the test due to the way it had been stored. Dr. Maris assured us not to get upset by this, he said that Neurobalstoma can actually change its genetic make up from inital diagnosis to relapse anyway. We wanted Hans' tumor tested at that second relapse, but Hans presented with only a bony lesion (the skull) and no marrow disease. It was impossible for us to get a biospy of his disease because it wouldn't have been safe for Hans.

Since we have a new positive spot on the MIBG scan, we made an effort to do a biopsy of that area (the right hip) for that testing. We found out just this afternoon that the bone marrow biopsy is negative. So, there is nothing to test.

Regardless, we are hopping on the trial in the hopes that he does have the expression, or that it will work for him even if he doesn't.

A new phase of this trial is just about to open. It was so successful and showed so few side effects that the investigators are opening up a new higher dosing level as we speak. Hans will be among the first kiddos to enroll at this new highest dose level. No side effects are really anticipated. Since it is so targeted, there should be no need for blood transfusion, no hair loss! Yay. I can't wait for those hairs to pop back up.

BUT the biggest problem is that they need us back at clinic in CHOP on each of the next four Wednesdays!!! I can't quite figure out how to wrap my mind around that one. With such a long cross country commute, we're considering staying out here and maybe only making a couple of trips back home, poor Kev:(

Anyone got a beach house in Jersey they can give up for a couple weeks;)

Unofficial Good News

I have to update to share some unofficial good news! Both Dr. Maris and the attending here have eyeballed Hans' CT scan to say it looks good (aka clean, clear and free of NB or any other tumor or cancer!). Preliminary results of the bone marrow aspirate look good as well. The actual bone marrow biopsy will take a couple of days. Dr. Maris and I both suspect it will be positive on at least the right side. However, the onc who did the biopsy didn't see any "large clumps of tumor" when he spread it on the slide...

All good. All I can say is Hallelujah! Thanks for checking up on this little dude. Thanks for your calls texts emails and notes. I haven't been too chatty so sorry if I haven't shot a note back. I'm just using every drop of my energy and emotional reserves to do what we've gotta do here. This just sucks out of you about everything you've got. I was shaking like a leaf througout the CT scan was as nervous as I've ever been about anything. We meet with our team formally tomorrow. Still inpatient tonight as we continue to deal with low sodium,low potassium and headaches. Dr. Maris attributes Hans' current condition to a bug that has zapped him, and this is how Hans looks getting through it sans adrenal glands. I'll take that explanation to the bank.

CT Complete

Hans and I had a long and arduous day today. The poor kid had to drink 720 ml (24.5 or so ounces) of Blue Kool Aid with IV contrast. This is bad enough when you're at your best. It is usually a pain that Hans gets through. But Hans is still fighting nausea, vomiting and headaches. He has needeed the IV morphine for the headaches three times since 4 am. He's been on an IV drip so he's had no thirst. Sooo... it took us SEVEN HOURS...from 6:30 am until 1:30 pm to get all of the drink in him. He did vomit once, but only lost about 30 mls. I was surprised they allowed him to take so long, and I was alost surprised they 'made' him drink all of it. I thought they'd give up on him in the normal 3 -4 hours and let him get by on 50% - 75% of the drink. Once you get through the contrast, the CT is very quick and Hans does it without sedation. Today he got a head, chest and abdominal CT.

We are waiting. We'll get all these results by tomorrow. I am very very nervous right now.

Thanks for your thoughts and prayers. I know everyone is worried about Hans right now.

Bone Marrows Complete

Dawn took this picture Sunday Evening while she was hanging with Hans as I made a much needed and appreciated run for supplies at the Ronald.

Oh my Goodness what a day. I can tell by the site stats that everyone is worried about Hansie this week! Thanks for the love.

Today was one of those awful days you hope you'll block out eventually. Hans woke up and from the get go was just getting worse if not better. He had a debilitating headache (an underlying scary mystery of this hospital stay), and then he vomited his pain meds. We made it up to the Alex Scott (Alex's Lemonade Stand) Day Hospital for our procedure only to get turned away. Since Hans had vomited earlier, the Anesthesiologist suggested a new plan. He sent us back to our room. We were to have the bone marrows done in the Operating Room while intubated. I didn't handle that change up so gracefully. The last time Hans was intubated was for a pretty awful dental procedure. What was it...7 caps? The poor guy came out of there hurting and wincing and crying about his throat hurting for days.

Sooo....we sat in the room and waited. Hans could barely hold on through the time it took to get orders written for IV Morphine for the headache he eventually rated an 8 on the pain scale. Then he slept all day. We got called up to the OR at about 4pm. To my delight, the team decided they could try the procedure without the breathing tube, since so much time had passed since any vomiting, and since they'd have the support of the whole team and the whole floor if anything was to happen. Well, it worked. They went in from the front to get the bone marrows. They are actually hoping to go right through or into (I'm not really sure which) the new spot that is alighting on the MIBG scan. The good news here: they hope to test it for the ALK mutation. We've never been able to test Hans' tumor for it before.

Hans came out of everything okay. With the location of the spot on the MIBG scan, Kevin and I are bracing our selves for news that there is some marrow involvement on that right side.

Now the CT is tomorrow. Let's hope Hans'll drink the contrast even in this state he is in. Sweet boy!

Actually, seeing the improvement I saw this evening, I wouldn't be surprised if we get discharged tomorrow. We haven't had a true fever since Saturday.

Dawn was here to sit with me through the waiting and after. Hans was up and alert for three hours after the procedure. He was even eating and drinking and playing a little! No headaches! No vomiting! Is he about to turn a corner?

Thanks for checking up on us.

Update

Hans had a superb birthday in New Jersey. Thank God for Dawn and her family. They picked us up from the Ronald McDonald house and delivered us to a perfect 8th Birthday Party at Chuck E Cheese. Goodie bags, check, gifts, check, guests, check gorgeous homebaked cake, check. I hadn't planned a thing. Hans went hard and had a perfect day. Thank you 8 times over to our angels of friends the Tennesons.

AND THEN... (why is there always an 'AND THEN''???) Hans spiked a fever of 101.7 just after midnight. Poor babe made it just through his birthday. Elle and Kev escorted us to the ER. We got admitted for fever plus vomiting plus headache plus low Sodium.... Bah. Kevin and Elle were back to the RMH to catch 3 hrs of sleep before jumping on their flights. Elle had a delightful layover in Phoenix where she was able to hook up with 2 aunts and a cousin and solve one of her wardrobe problems. Thanks Debi, Holly and KK for spoiling her! They have safely arrived by now. Hans and I are hunkering down on 3 South at CHOP. Hans has been very sleepy, he has eaten nothing by one Froot Loop and I believe he's been asleep for all but about 4 or 5 hours since Midnight Friday. I guess he needs his rest. I'm posting now because I want everyone out there to think nice positive good thoughts about him getting well enough to go ahead with the bone marrow aspiration and biopsy tomorrow. This is a sedation procedure, so they might have to cancel him if he doesn't turn a corner. Thanks. I just want him to be able to get in there and get those done. We hope to be on a new trial and a plane by the end of the week. THANKS.

Love, Lara

"Changing Things Up"

Well, shoot. We did not get the news here in Philly we've come to expect so consistently. The unfortunate news is that Hans has a new spot of NB. There is a new small bright spot on the MIBG on Hans' right hip. The spot on the skull is stable, but the new spot puts us into the category "Progressing". What does this mean? Progression means that the Millennium has stopped to control Hans' NB. I guess you could say Hans' tumor has built a resistance to the Millennium, so it's time to move on. It is never fun to jump ship and hop on a new trial before you have to, but honestly, we would have had to change up his therapy in December anyway (there is a 2 yr limit on this trial). This just forces our hand to make the change about 5 months earlier...

So here we are. Hans and I will be detained in Philly all next week.

Kev and Elle will stay long enough to celebrate Hans' birthday tomorrow and they will catch separate flights on Saturday. Elle has a Sea Kayaking Girl Scout Camp to get to in Washington State with her first ever BFF, Greta! Kev has to go back to the grind of the flooring installation in our new house and his job...

Hans will turn 8 in his adopted 'hood of Philadelphia. I can't help but relfect on my little All American Boy! He has visited many different parts of the country. He thoroughly enjoyed our trip to Hawaii and frequently talks about how he wants to go back. He has the frequent flyer miles of many business travelers. He has received treatment in 5 states, and been consulted on by docs in several other states. He has swam in two oceans, visited one rain forest, admired both vlocanoes and the Great Lakes, and road tripped up and down the entire West Coast. He knows his country pretty well! We are all so proud of how he finds joys in the everyday pleasures of childhood and is never down about his challenges. He is developing his little sense of humor and cracks us up all the time.

We are staying next week to do a full workup of scans (BoneMarrows, CT). We will meet with the docs on Wednesday and hopefully enroll on a new trial by Thursday. We've still got our eye on the ALK Inhibitor trial. This is the trial we were considering back in 12/09 when we got on the Millennium trial. There are a couple other options, so I'll keep you posted. Our goal remains the same: to rid his body of his disease burden and maintain his quality of life while at the same time minimizing toxicities to protect organ and other important functions.

In the meantime, it's amazing that we have the friends we've got to scoop us up when we need them. Before we had even confirmed the new spot. I had a text from our friend Dawn assuring me that she's got Hans' b'day covered tomorrow.
Thanks for any thoughts, prayers, or good vibes you can offer us at this time of transition. We are still only hoping for the best of outcomes for our boy.

Where in the world is Hans Weberling?

Elle and Hans in their matching Sponge Bob PJs tonight.

We were home for one full day, and then hopped a red-eye to Philly. We are trying to catch up on sleep at the Sheraton. All four of us came out for this trip! Hans got the injection, labs and even the office visit done today. Tomorrow is going to be the MIBG scan and results. Then we'll fly back to CA.

We are a little exhausted, but hopefully we'll be in good shape to celebrate Hans' birthday on Friday!

two pics

Summer, 2010.

Here are just two pics I found of my kids with their Great Grandpa, Hugh Dean Daniels.

Need to find some to post of Grandma Lorraine now!

Shucks - tried to upload a pic from my new phone, but it doesn't wanna work...

Sorry for the lack in updates. The good news: Hans has been great. He had two nights of mystery stomach and arm pain, and we almost went to the ER, but it resolved before we got checked in. We drove to Seattle in two days time. I was thrilled to be able to drive as an alternative to be always flying. It is two eight hour days with an over night in Yreka, CA. We managed to get Medco to approve home based Neulasta, and get it rerouted to my mom's address! We had labs in Seattle on Wednesday and they looked great. HGB a robust 14 from that last transfusion, ANC 18K from Neulasta, and plts okay at 119.

My grandpa was a really great guy. You could really learn all the lessons you ever needed to about life from him. By example, he taught three generations to: Work hard, put away for a rainy day, take care of your family...in sickness and in health, feed them well, go to church, support worthy causes, grow a garden, keep it simple, recycle, and sit back and enjoy the ball game! I am touched that my family has selected the CNCF for memorial contributions in his name. Both of my kids had a special relationship with him and we are all so blessed to have had him in our lives as long as we have. The truth is, everyone who knew him had a special relationship with him.

It was an emotional week in Seattle, but we had some nice times too. Hans bonded with everyone by "training" them all on how to play Angry Birds. I think he provided the 'free training session' to at least a dozen family members on this visit! We celebrated Hans' birthday, along with our little cousin Erin's bday (they are a week apart). We saw fireworks in Edmonds. We passed some time playing croquet in the yard, having picnics, going to dinner, and taking some nice walks at Green Lake and down at Edmonds beach... not bad! We were able to get together with Grandpa Oscar, Grandma Kathy and Grandpa Dale, uncle Quinn. I also squeezed in one night of a girls night out. Thanks for hooking up with me...Jana and Sunny!

We are waking up here in Yreka, CA... about to hit the road to reunite with Kev who has really had his hands full holding down the fort back at the house... all our animals, the DIY projects and unpacking are surely more than enough to deal with!

Lara