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

Home and off again...

Here we are - we got home late Tuesday night. Hans is okay but we are keeping a close eye on him.

However, I came home to some pretty sad news... My grandpa passed away Tuesday night.

I'm going to try to make my way up to Seattle with the kids to get to his memorial and for a quick family visit. Kevin has gotta stay here and work.

Lara

Need Blood

We are doing better now. Hans has been inpatient on the 5th floor here two nights. We are all but discharged, Hans just happens to need a bag of blood before we hit the door. I believe it is all of Hans' blood draws and fluids that have drained and diluted his Hemoglobin to the point of needing a transfusion right now. He is in the process of getting a type and cross and then he'll get going on his premeds... Benadryl, Hydrocortisone and Tylenol, and we'll cross our fingers that he doesn't have a reaction this time.

I'm the sort of person that never likes to say "I'm bored" but I find myself wanting to say that a few times a day while inpatient. Luckily there is a big grocery store two buildings away from this hospital. That is practically a miracle. Not all hospitals are that way! The kids are entertaining themselves reading magazines, coloring, playing board games and taking cute pics on Kevin's photobooth application of his Mac. Poor Kev had to go work and left us his laptop and his car. We are fortunate to have Aimee and Stefano and Heidi checking up on us and there to help out in both towns.

I am sitting here thinking I need to scale back my move-in goals. Maybe five boxes a day would be more reasonable. I need to repeat my mantra "Hans, you are my first priority". That's what I had to keep reminding myself in the chaos of getting our old house ready to sell.

We had planned to really work around the house this weekend and get some stuff done. I had signed Hans up for "stroke development" swim lessons that were to start yesterday. Ah well. Not to be. We are merely grateful that we are not inpatient for more serious reasons.

oh what a night

Oh Boy,

Here I update from the ER of CHLA. Not where ya wanna be, but what are ya gonna do? The good news is: Hans seems to be fine. He surprised us all with a little bout of chills and fever about 24 hours ago. Since then we've been on a tour d'ER's of California. We started out local with a visit to Bakersfield Memorial last night. We did the usual and went home for a 3 hour nap to be woken up by a little peek a boo fever of 103.4. We didn't want to play around, so drove straight in to LA. This can be as fast as an hour and a half in no traffic. We've spent the entire day here and have just been informed that we have a room on the fourth floor with our name on it. Fever has never been an issue again, but fatigue and then a low blood sugar and a low BP have been. Yikes. We are being held for now as the new Endocrine and Hem-Onc teams get to know our boy. They are watching his BP, sugars and the fever.

We are looking forward to getting a room with a view that's a little more cushy. The ER is not really built for an all day stay. But, we're just glad that fever didn't go out of control.

Must say thanks to Aimee who has come to hang with us, and even shuttle Kevin back home and bring me back the car since we only drove one down this morning. Sheesh, what a pal.

Thanks for checking up on us. Hopefully he'll be all patched up soon. They have decided to hold the MLN for tonight as Hans gains some strength.

Starting Round 25

Hans likes to try to jump right on the huge beach ball.

We got the all clear to start Round 25 of MLN 8237 tonight. We met our new home team and I think it is going to go really well. Dr. Marachelian is actually the head of the New Advances in Neuroblastoma Therapies (NANT - a primary NB Consortium) so Hans is extremely fortunate to have such brainpower on his side on both coasts. We liked the team and got some referrals to figure out our local care. It's kind of exciting to explore a new city. I haven't spent much time in LA at all and the hospital is right on Sunset Boulevard, so there is a lot to check out. We tried one place, El Chavo, for chips n salsa, but according to Hans we'll have to keep looking. Not a bad job - finding the perfect Mexican joint in LA.

I'm such a counter. 102 boxes to go. My goal is to do 10 boxes a day for the next 10 days... We shall see...

In sad news, Kevin's grandma Lorraine Weberling passed away early this week. She was a sweet, sweet lady. She'd just about kiss your face off when she saw you. I keep remembering that Kevin stayed with his grandparents while working in the cherry orchards in high school and college in Mattawa, WA. He'd have to be up and in the orchard by 5am. His grandma would wake up every morning to fix him a workman's breakfast of sausage, eggs, potatoes and toast at 4:30 am! She was that kind of lady. We hope that Kevin will be able to join his dad's side of the family for a small memorial next week. That's one of the blessings of being on this Coast; to be able to get back home when needed.

Off to Meet the New Doctor

Hans and Honey taking a dip last night. (Honey will get in if we encourage her, but she prefers to sunbathe.)

We've been in CA now two weeks and our house still looks like a bomb went off! Got our stuff Saturday, and did pretty good about getting things put away for the first couple of days. Now it seems like what's left is mostly weird stuff that we probably should give away anyway... I still have a slightly compulsive side, so I did count the boxes we have left to sort through...110! UGH. After finding places to recycle packing paper, making several runs and finding a Goodwill and doing a couple of other errands yesterday... I only got to 5 boxes. It's a mess, but some day it'll come together. Through Craigslist I have a couple ladies who come and pick up my boxes as I empty them.

I think all the chaos caused Hans' labs to take a little hit. It wasn't until Monday that I got lab results from Thursday's lab draw. He'd had a HGB of 8.2 and had been having some headaches over the weekend (one sign of a low Hemoglobin). I went ahead and brought him in again Monday to make sure he was okay. They all bounced back nicely to the point that he should make counts in LA today...

We are still staying in the organized comfort of heidi and Stefano's for just another night or two (trying to ease the transition for Hans). We got Hans all signed up for swim lessons to start next week and last night we were happy to meet a few of the kids on our block - the same age as our kids!

We're off on a new adventure to find our new hospital and meet the new Doctor. We'll have some fun too, hooking up with our friend Aimee for some dinner and fun after.

plts and labs

So, we've had a slightly more "medical" intro to Bakersfield than we would have liked. I won the "First Trip to the ER" award for a mysterious insect bite that became infected and is starting to disappear with an antibiotic cocktail. I'm okay now, it was just a little sketchy and itchy for a while there. Hans got introduced to a new lab here. He was on a platelet watch with Platelets of 22 on Tuesday, but they bounced back up to 40 by Thursday. We go into LA on Wednesday to meet our new 'local' Pediatric Oncologist, Dr. Marachelian, at CHLA to see if we get checked out for Round 25 of MLN8237...

The house project is coming along, most of our appliances are now in and running, most of the inside is cleaned up, and the carpet is ALMOST all ripped up. We'll be trying to beat the clock now - - we just found out the truck gets here with all of our stuff at 8 am.

I hope to post a pic or two tomorrow or Sunday.