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.
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.
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.
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.
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.
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.
We are here! Hans is doing okay here about 1/2 way through this cycle, but he is definitely having some mouthsores.
Our house is a bit of a wreck, carpets ripped out - painters painting. I've been cleaning, Kevin has been ripping out carpets, ordering stuff, etc. It's a big adventure/project for sure. The place is still pretty much uninhabitable right now. The kids are helping out and taking swim breaks in our cool pool. Blake arrived with our pets late Thursday night and is already off. Our movers won't be here for another week or so with all of our stuff.
In the meantime, our friends Stefano and Heidi are putting us up! Thanks guys! We've know these guys since Kev and Stefano were in grad school together in Santa Cruz. Stefano and Kev both started working at Exxon in Houston. Stefano has been out here with Heidi for a few years. They are only a mile or so away, and ultimately hospitable, so it works out great!
It's Day 7 and Hans has done okay with Round 24. He has complained a little bit of eye pain/headache but no mouth sores. The "white meds" make him loopy. The other night we were playing Wii and he was really laughing and cracking us all up. Kev asked him how the white meds make him feel, he said, "I feel like paper." We try to give them in the evening so that all he really has to do is hang out while he's on them.
We have about 7 guys in our house packing us up today. Pack today, load tomorrow, fly out Wednesday. It is such a luxury to have the movers! Wow, that's one of the greatest things about getting relocated for a job! Kevin forwarded us our plane tickets this week. 3 one-way tickets to California!
We hired Blake, a 20-something neighbor/friend to drive out our dog, two cats and some houseplants in the CR-V. I didn't think the kids and I would enjoy that trip too much! Kevin brought one cat on the plane yesterday. He was not too thrilled with that. The worst part was getting the cat out of the crate to get through security. Even though Black had 2 sedatives, Kevin still got scratched up. Oy!
That's the update. They load up our beds tomorrow, so we'll be crashing at our friends Carmen and Jim's. We go in for our last clinic visit/Neulasta injection on Wednesday and fly out Wednesday night. Since our car leaves Tuesday, our friend/neighbor Alana will be chauffeuring us on Weds! We certainly appreciate every one's kindness and generosity.
Here's Hans' jump off the roof at the Pier at our friend Dave and Sheri's Bay House. (Thanks for the super weekend, guys!)
Whew - we've had a lot of fun since my last post! I was incredibly, pleasantly surprised by how well Hans did over the weekend. For so long now since treatment began, he has kind of stayed safely in a little bubble of comfort. BUT, lately, we are noticing he's willing to try new things and get out there a little more - which is much more fun. Hans jumped off the roof on the pier here within about 5 minutes of our arrival! He's saving the higher roof for our next visit. Hans also enjoyed the speed boat - inner tubing, and even gave knee boarding one shot. Elle and Caley are too cute together - they've been buds since YMCA preK soccer. Hans made friends with the two other boys staying there - Michael had no problem jumping off the high roof! FUN.
Hans also made it through a long, fun dinner at Benihanas with the Girl Scouts - he was the only little dude there with a lot of big girls. With Kevin out of town, he's been dragged around to more of these kinds of events than he would usually have to! But, maybe it's all helping make him just a little more flexible.
Our theme has been "let the good times roll" as we continue to have swim dates sleepovers and get togethers...trying to have that one last visit with each of our great friends!
Our last day of school is tomorrow and we have 7 more nights in TX. Movers come Sunday. Kevin is a busy guy. Our new place needed paint, appliances and flooring - so he is getting all of that going.
Hans' meds arrived yesterday and we just got back from labs at Dr. Irani's office today. He'll go in for Neulasta with at TCH Tuesday. That's the scoop...