Elle's having fun in the sun

Elle is having a much deserved kid's break! Everyone has been having fun showing her a good time, shopping and swimming in the pool. She was a surprise for her cousin Jessa's graduation - and she was surprised when she showed up at the airport to pickup up the Aunts' and saw Elle!

Jessa's graduation was very nice. We're all very proud of her. Now she is off to become a Texas girl at Baylor.

We're off to Prescott tomorrow for a day of fun, sun and shopping!

Room Number for Hans

Lara forgot to mention that they are in room #914 if you want to go to www.texaschildrens.org (go to send patient a greeting icon on the right)to have a card delivered by a nice volunteer up to Hans.
Thanks,
Carmen

Surprise ER run!

Wow - it has only been about 24 hrs since my last post, but - geez - we took a turn! Hans woke up with fever at about 3:30 am and we were on our way to TCH by 4 am. We got here and Hans' fever just hovered around 103 for about 14 hours. It seems to have finally broke. The poor little guy was just wiped out - he slept and burnt up all day long. But, now he's looking better.
We did get some other concerning news, though. They wanted to do a chest x-ray to look for pneumonia. That was clear, but a bit of his right arm/shoulder showed up on the slide. The Radiologist detected a likely fracture in the area where tumor is involved. That's about all we know now. Hans will do more xrays tomorrow and will meet with ortho surgery to be fitted in a sling. We knew his arm was hurting - but I guess this tells us a lot more... I think we're all ready for a bit of good news.
The plan is to stay put up here for at least 72 hours.
Fortunately, Elle is safely away from it all on a long weekend with Kevin's mom's side of the family in Scottsdale for Kev's cousin Jessa's HS Graduation. Congrats, Jessa! Thanks to Grandma Kathy, Aunt Holly, Uncle Michael, Aunt Susy, Aunt Debi, Uncle Mark and KK for taking great care of her. Say hi to Great Grandma and Great Grandpa for us.
Lara - Kevin - and Hans
ps - must thanks the Nolens and Sweebes for helping out with Honey and Carm for thinking of our kitties who I actually forgot!

Operation XRT

Pictures: Hans, about to go into radiation. Hans fishing at the lake near our house, Hans with nurse friends, Mercy and Randa, and then Natalie, Hans sealing his eyes and mouth shut with stickers, and Elle and Honey at our Mother's Day lunch out at the bagel shop.
Hey guys -
So, sorry I haven't posted and have left ya hangin' - but we've been out of the hosp. since about 7:30 pm on Tuesday nite. Things went about pretty uneventfully for a hospital stay. Hans started Radiation Therapy (they call it XRT) on Monday.
I have to say that Hans is very proud of himself, and he should be. He is doing the XRT wide awake and last time he had to be sedated. He knows it is going to make him better and he will do whatever it takes. He has THE BEST attitude about this! He actually says that his arm feels better already. Kevin and I notice that he still isn't moving it much at the shoulder, but he does move it at the elbow and wrist. He is really into the Power Rangers right now and he thinks their "Operation Overdrive" is pretty cool - I think he's quite the little Power Ranger Powering thru Operation XRT. Our neighbors Jack and Josh thought Hans needed a prize for doing so great with radiation and they dropped off a care package that included the green and black rangers on motorcycles. (Thanks, guys!) They got to stay with him in the radiation room while I had to step out! That was pretty cool:)
So - for now - Hans is going in daily for radiation - he also has counts, dental and endocrine appointments. He may need transfusions - we'll see, he gets counts tomorrow.
But, just so you know - he's feeling pretty good. We actually hit two fishing holes tonight! We didn't catch anything, but did see a black snake with red stripes in one pond. Hans keeps saying "I'm so happy to be home." And, he loves the puppy, Honey, who is doing well with our family and she's coming along with the housetraining!!! Hans also keeps saying "We don't have to give this doggie back!"
Thanks to the Sweebe family for a really delicious and nutritious salmon dinner tonight. Elle is heading into a pretty busy weekend - but I don't have time to go into it right now. I just hope she'll post some pictures of her adventures!
We got some happy news today - Elle's school, Glen Loch Elementary says that they will have a spot for Hans at school - no matter what we choose - Pre K, even K, or a home-based K program. I feel great relief that it is there, even if we choose not to use it. At least Hans will have the option to go to school in the Fall! I really wanted him to be at the same school as his sissy - and Kevin and I and Dr. Russell realized he needed to be in a public school with a full time RN.
Oh - one more thing. Hans finally grew! He sprouted up 2 cm since his April 10th visit. This was pretty incredible to me after he pretty much flatlined on growth for 18 consecutive months...
Finally, on a really heart-breaking note, our dear sweet little friend Chloe C. was admitted to the 9th floor on Tuesday. This is a wonderful, loving family that could use your prayers.
Thank you.
Lara

Day 4 of "Topless Cyclone"

I saw on another NB girl's blog that they referred to the Topotecan/Cytoxan as the "topless cyclone". So - I guess we'll see what that's all about. So far he was getting fevers (better now) and the nurses were chasing his electrolytes - he was wasting potassium, but now I think that he's eating a little better, he's doing better. Since he was getting fevers for a couple of days - they have been running blood cultures. They're all coming back negative. Unfortunately, the bone marrow did not come back negative - there were tumor cells on the right hip sample (same side as the arm with pain). As Dr. Russell said, this doesn't change the treatment plan, but to me it makes it seem all the more serious.
Hans will start Radiation Treatment tomorrow, which should reduce his arm pain. He will go for 7 days of treatment and is such a big boy now that he'll be able to do it without sedation. It was hard for me to take Hans back to Radiation - we were never supposed to go back there!
This whole week I think the reality of this relapse is just sinking in deeper and deeper.
I do have people to thank! Michelle and Carmen are putting together a meals list for us for Tuesdays and Thursdays. Those are the main clinic days and we'll appreciate that very much! Anne, Eric and Kira did a great job of taking care of Elle this week - thanks. And Shirley kindly included Elle in Daniel's b-day plans Friday afternoon when other plans we had weren't working out. Thanks to Grandma Stephanie and Roxie for sending balloons, candy and toys to brighten room 916 - and we have been receiving many TCH postcards - so thanks for those too. Kerry - we loved the special delivery for Hans and his puppy! He can't wait to get back to Honey!
We're just sort of counting down until we can break out of here. Chemo has been getting started very late - so we might start tonight at 8, tomorrow at 6, and then we should be able to get the nulasta shot and be out the door by 4 or 5 on Tuesday???Lara
for a little bit of fun, we found this website - http://www.scholastic.com/captainunderpants/namechanger.htm
I guess you can call us Booger, Flunky, Crusty and Cheesball Chucklepants - check out the site and you can sign in the comments with your official captain underpants convereted silly name!

Hans got his port

Hi -
Yesterday Hans finally got his port - it was officially yesterday, but just barely. He didn't get called down to the OR til 9:30 pm for his 4pm time slot. They took him back at 10:30, and called us to get him at midnight. We finally made it back to the room after 1 am! The little guy was such a trooper. They were giving him IV fluids with glucose and potassium, so I really think that took the edge off of his hunger. He was a great sport! He didn't get to eat or drink at all yesterday:( But, the other good news was that Kevin wrapped up in Oklahoma and made it back here to escort Hans to the OR! At the end of the day - I think we all just felt fortunate that they were able to actually get it done and that Hans handled the day so well. We felt honored by Dr. Nuchtern's commitment to Hans - he wouldn't let anyone else touch him. Dr. Nuchtern was flying out of town this morning at 5:30 am and we know he rode home from the hospital on his bicycle after midnight last night. I got the sense that things did not go smoothly with the case before Hans... But, I hope the little child is recovering well today.
So - with the very late start with the port we didn't start Chemo last night. Kevin and I realized that maybe it was just for the best. Hans is expected to be a little sore after surgery. They went ahead and did a bone marrow aspiration as well - so he is sore in both his hips and his chest. They should start Chemo this morning. As for Radiation - I still haven't heard from Methodist Hospital, where they do the radiation, so I'm predicting that'll be starting on Monday...
We shouldn't hear the bone marrow biopsy results til Monday or Tuesday, so we'll be praying for Negative. Dr. Russell said it doesn't matter for treatment, but it'd be nice to hear.
Elle is being well taken care of by my friend Anne, and having lots of fun with her friend Kira... Kevin is glad to be home. Hans is glad to have the IV out. I'm not sure if he understands that we'll be here 5 or 6 more days, but we're trying to explain to him that he needs to be here to get the "magic water" (chemo), so that it can eat up the boo boo in his arm. I borrowed that term from an incredibly proactive group of parents that has created a foundation for fast-tracking innovative NB research. Check it out at www.magicwater.org
By the way... We did hear last night that both Erin and Chloe aslo got the scary news of tumor progression and relapse. So many kiddos to pray for! Colby's scans are coming up next -so they better be good. you can check out his site, and order one of his mom/Tracy's cool shirts - just $10 - www.caringbridge.org/visit/colbyash

We're Inpatient Again

Hey All -
So, we're really back in it! Sitting up here on the 9th floor. To be honest - it was surprisingly difficult to step off the elevator and onto the 9th floor for an admission. Thankfully, some of our favorite nurses, Randa and Natalie were right there to scoop us up. I've known it was coming, but the emotions were pretty strong. Hans had counts done today and an IV placed. His counts look great! This will help with the chemo he's about to get! He really does not like the IV and wants to have nothing to do with it. But, with the new treatment plan we've finally decided upon, he won't have to deal with it much longer.
Tomorrow Hans will have a port placed in his chest, which will allow easy IV access, but it is under the skin and won't need regular cleaning and dressing changes, and Hans will be able to bathe and swim with no problems. I found out that Dr. Nuchtern was doing the surgery - and 'lo, the waterworks began again. We love that man! I cannot envision Hans in better hands tomorrow.
Then, Hans will begin two cycles of Topotecan/Cytoxan Chemotherapy (the 'best known' treatment for relapsed Neuroblastoma).
He will also start concurrent Radiation Therapy shortly, his Radiation Oncologist just has to review his scans, set a plan for his treatment and get him on the schedule. I have a feeling they will get him in Wednesday.
Kevin has to be away at work in Oklahoma and I KNOW it's killing him not being here for Hans. All I can say is that Dr. Russell bent over backwards to ensure that both of us were in on the final treatment decision (we didn't know for sure what treatment approach we'd use until about 1:45 today). We had time to reach out to other parents and a handful of other Leading NB docs were extremely responsive to our emails. We feel we have made a fully informed decision!
We should be inpatient another 5 days of chemo - and then home, to finish up radiation on an outpatient basis.
The good news - the report only showed that one area on the arm!
We are already in the hospital ready to fight this stuff off!
Hans wants to get his boo boo out of there. He was actually ready to come to the hospital last night. He knows specifically that his bone is hurting so he knows that this is where he needs to be.
The second cycle begins 21 days from now. We'll rescan in 6 - 8 weeks.
Please pray for this approach to heal Hans completely of his cancer.
Pray for Kevin to wrap up quickly in Oklahoma so that he can be where his heart wants him to be, here with his boy.
Thanks To: Anne/Eric/Kira for hosting Elle this week and shuffling her around, thanks to our neighbors for the meals, and thanks to everyone for your prayers. Honey is lounging this week at Man's Best Friend and I'm sure they're treating her well and that her kennel experience will be conducive to good potty training!
Shelley C. - It's pretty cool to see the FLEET of bikes up here on 9 in Haleigh's honor. How sweet! I Haven't heard yet but I'm hoping erin and chloe have received good news on their scans.
Lara
PS - we're in room 916!
www.texaschildrens.org

MIBG lit up

So - we heard from Dr. Russell that the MIBG lit up in the arm, maybe one funny spot on the leg in the bone scan?? So - the relapse is official. We're painfully switching gears. We may start to treat this as early as Tuesday. I'm just so pleased that we got into that MIBG this week. It would have stunk to wait a whole week!
At first count, we hit $2,500 in bake sale sales! That doesn't even include our debit/credit card sales, or perhaps a few more pre order cakes. And my friend Tracy sold hundreds of her "Beat the hell outta cancer!!!" t-shirts. I think she has more - email me at kevinandlara@hotmail.com if you want to order one. I'll get you her email address. She's only selling them for $10 (probably plus $2 to pop it in the mail.)
I have an idea that I'd like to encourage Lunch for Life bake sales at multiple sites around next valentines day. I think it'd be cool to have them all over! If we can make 2500 at one, how much could we make with more sites? Just stay tuned. I wanted to plant a seed about the possibility for next Valentines day!
I think I'm going to go off line on email and the internet for a few days. I have a puppy to train - and the email seems to suck a lot of my spare moments... The potty training takes a lot of focus! Gosh - hope I've got it in me!

Okay - thanks for your prayers, posts, calls, emails and support this past week. It helps us all feel supported!
Love, Lara

Still waiting

Hey -
The good news at this point is that we got into a cancelled MIBG appointment yesterday and today - we were able to push it up from what would have been a one week wait! I was really happy about that. Less waiting.
So - right now we're waiting until that gets read tomorrow. The MIBG would confirm or rule out ? the NB. What a wait! We had a pretty special morning. My friend and neighbor, Michelle, organized for Deacon Sid Sandiford to come over and say some special prayers for Hans. Carmen was able to join us for that. Deacon Sid baptized Hans in 2003, so it really meant a lot to me. He also blessed the Rosary bracelet that I finally made myself and have been "burnin' up" as Claire says. Michelle also brought us dinner on Tuesday and Carol, another neighbor brought us dinner tonight. The meals are so helpful and appreciated!

In the mean time, The Bake Sale must go on! It's such a nice feeling to have my friends and neighbors, and their neighbors and friends bake for this thing. I was a little off today - I thought I'd be at home all day. So, all I did was 2 batches of rice krispie treats! Ah well - some of you did A LOT!!! Thanks to Anne and Amy - who were baking fiends with lots of loaves, Ginger, Vickie, and Debbie dropped by tonight! I know that Michelle, Carmen, Shirley, Donna and Dana are dropping by in the morning. They've all been baking their buns off. So, too, has the Midnight Baker, a nurse up at the Cancer Center has made a special offer to take preorders for tomorrow, and she's donating 100% of the proceeds to Lunch for Life! How cool is that??? It's going to be really nice - a lot of the TCH moms are joining us up there. Charon has been collecting lots of baked goods, and Shannon, Athena, Tracy and Sarah will be down there. Erin B. is sending down brownies from college station. It's pretty cool - we'll see how we do.

A few other NB kiddos had big days today - Ryan aka batman, and little Chloe P. both had MIBG's today - along with Hans. Chloe P. is going through the exact same relapse scare as Hans is right now. UGH! Dr. Russell is a busy lady. She has really been there for us this week. It was pretty rough on Tuesday. She came and found me in the CT waiting area just to calm me down I think! She also had that impromptu meeting after the bone scan. She was really ultimately available to us when we needed her worst, and she has already sent us her top ten list to look over. Sweet, sweet little Chloe C. has been in pretty serious pain. Her mom is doing an amazing job taking care of her at home. Erin B. also has some symptoms - we're totally hoping for a virus! Also, it should have been Carlie's 7th birthday today.

So - that's a little peak into our TCH world tonight. A lot of action. Too much action in fact. The good news is that Conquer Childhood Cancer Act has finally enough votes to get off the floor! And - it seems that a doc in Philly identified a chromosal link to NB. One step closer to figuring out how to get rid of it. For everyday that these kiddos survive their NB, we are just that much closer to finding the cure. Thank you for your kind support during this difficult time for us.

Love, Lara and gang

Scary News Confirmed - But Still Hope

Hi all-
Well...Tuesday Hans had his CT Scan and Bone Scan and they essentially confirmed what the X-Ray had hinted at over the weekend. There is most likely a lesion (neuroblastoma) on his upper right arm just below the shoulder. This was revealed on the Bone Scan. His CT Scan was great and there were no tumors present in the abdomen or chest where the original tumor was located. We kind of knew what the outcome would be because as of late last week he has been unable to use his right arm. Everything below the elbow works fine, but he holds his shoulder/upper arm close to his body like it's in a sling. He's very carefull not to push off of it and won't hold anything heavy with his right hand. That said, if you saw him, you would think he looks great! He feels good, his appetite is good, and he generally feels like doing everything normally. He tells us that he has a 'boo-boo' in his arm and needs to go to the 'clinic' so the doctors can 'get it out of there'. Don't worry...Hans is Hans and his spirits are good! He is one of the most bad-ass little kids you will ever meet. All of these little kids are.

As for Lara, Ellie, and I...kinda rough? When someone is first diagnosed with neuroblastoma there is a standard protocal for treatment (Chemo, surgery, radiation, bone-marrow transplant, etc.). This has all been proven through various clinical trials to be the best shot at beating neuroblastoma and achieving cure status. It's one of the roughest cancer treatments out there, but it works just enough (~40 percent) that it's worth it. That's what's so frustrating, though....Hans is on the other side of the odds now. Basically Dr. Russell told us that now we are in a whole different arena. There really is no "cure" per se. Now it's more like managing a chronic illness. You hope to stablize the progess of the disease or get it back into remission. We know many people in this situation. Some go from relapsing to clean scans to relapse, etc. Others go from relapse to stable and no further growth. There are currently over 90 clinical trials for neuroblastoma patients. Many of these trials Hans will not qualify for because of his adrenal glands being removed, others because of the condition of his disease, etc. Many he will qualify for, though and Dr. Russell is going to make a sort of "top-ten list" of suitable trials/treatment options for Hans over the next 2 days. Then we will be able to look at the "menu" and see which one we want to do. The hope is that we keep making it long enough that one of these trials becomes another smoking-gun, standard treatment towards a cure.

Just know that our goals are:
1) We want Hans to be as happy and positive as ever
2) We want Hans to be our/your son, brother, granchild, friend for a long time to come

Love
Kevin, Lara, Ellie and Hans

Some Potentially Scary News Over the Weekend

Hi Everyone,
I have put off posting this - but I figure you all probably need the information parcelled out just like we do. Sometime last week Hans started to complain about his right arm hurting. I think he could sense that I was very scared about it, so he stopped complaining. Anyway, I finally shared my concerns with Kev on Saturday and we wound up calling the on call docs. Dr. Craddick thought we should bring him into the ER at TCH to make sure there wasn't a fracture. Hans and I spent about 5 hours down there, doing a small series of xrays. The results were inconclusive, but there was something suspicious/"unhealthy" looking about the bone in the upper rt. arm. One possible explanation is relapsed NB. Of course we're praying that this is not the case. But - I wanted you all to know this is what we might be up against once again. We have scans tomorrow and I am sure Dr. Russell will get in touch with us quickly. I think the benefit to having a little warning is that I've been able to do a bit of research on the many many clinical trails out there for relapsed NB. It's very overwhelming, but at least we've had a couple of days to help formulate semi-intelligent questions for a possible big meeting with Dr. Russell.

We have always been pretty open with our kids. As Hans and I were waiting for our car outside of the ER, I told him that the Dr. thinks maybe his "boo boo" is trying to come back in his arm. Hans just took a big breath and said, "Well, my doctors are gonna have to get it outta there." So - that's the attitude we all must adopt. We've got to get it outta there. I am trying to cultivate a focused calm, but as you can imagine - that's difficult. Thank you for your prayers and support.

As I was waiting for the oncall service to return our call, I told Kevin that we were going to get Hans a dog. It may be completely insane, but I was very clear that this little guy needed a dog as a source of unconditional love and joy! I think it'll also do Elle a lot of good through another potentially scary time in her life. And like I said in my last post, Hans showed such faith and belief that he would get a dog, who was I to stand in the way? He shows the same faith that the doctors will get this boo boo out of there too, if that's what it even is...

I'll post more when we know more.

Love, Lara

Drop of Carmel Honey

Okay -so - big news around here.
I caved! We've been dreaming about a dog for some time. It seemed that a Female Golden Retriever puppy was the best match for us. Hans had such faith that "God was building us a new doggy", I finally thought - who am I to get in the way of that?
I guess, too, it just the best medicine for our boy. Elle doesn't mind one bit! We were supposed to pick out a unique name for the AKC papers - I was thinking of "honey" before we picked her out, as soon as I met this one I started thinking of names like Carmelita and Carmel. We'll call her Honey, or maybe Carmel, but Hans says Honey a lot better.
Just wanted to share that news.

Please, please keep the prayers coming for lovely scans on Tuesday. It's always extremely nerve-wracking to go thru this scan process.

Thank you!

Love, Lara