Home

Hey we made it home.  Hans and I got back last night to a sparkling clean house (thanks PL!!!) and a home cooked meal, thanks Kev and Elle!  I have pretty much given up on cooking and cleaning!

They did a bone scan.  We saw one area on the leg we could radiate.  Hans went in Friday for a really high one-time  dose!  We are going to play it by ear.  Our Xrt doc said that once leg pain is relieved, Hans may be able to feel pain in other areas and we can go back to the bone scan and go from there.
The bone scan wasn't pretty, but I'm unclear if there has been further progression from the Aug 1st MIBG as the two are hard to compare... We will follow up with the team next week to discuss all our treatment options.  Hans did much much better last night but this morning his hip is bothering him:(

Inpatient

We came into clinic for a checkup and wound up in-house tonight.  Hans needed blood and platelets (thank you donors!!) and we are continuing to tweak his meds for leg pain, so we are having a pow wow with our pain team while we are here.   Platelets were too low to start the second round of Vorinostat today:(

The kids started school this week.  Elle is in the eighth and Hans is now in third.  Mrs. James is coming by our place everyday for Hans' homebound and it is a lovely benefit!  Elle is a peer tutor for Mrs. Hodges this year so they continue to bond.  It's pretty cute:).    Elle joined a new competitive soccer team, so now that we have a soccer team and schedule, it feels like we are ready for a new year to begin.  Go Legacy!

Oh, thanks to everyone who was able to donate to Hans' little National Children's  Cancer Society campaign!  It is doing great.  We feel the love and we thank you.

Yesterday we went in to see Dr. Marachelian. Hans has been having some trouble urinating. It is just hard for him and it isn't coming easily. It could be a couple different things. One thing we were obviously worried about was NB. Luckily, a CT yesterday revealed that it's not NB. I guess in a small number of kids urinary retention comes along with persistent use of certain pain meds. We tweaked his meds regimen a little bit, but it looks like this is just a new problem we may have to deal with for the foreseeable future. We are supposed to keep track of his ins and outs and watch for fever, which could be a sign of a bladder infection.

 Hans' legs were feeling better, but now they are back to feeling worse. This is a scary time for us. A lot of you are asking what we need. We honestly don't know what we need right now! Right now we are just regrouping as a little family of four and trying to get a handle on an ever-changing situation. I feel like I'm balancing on a slippery log.

Kev was able to take all last week off. He was able to bring Hans in to radiation twice and get started on his next home project - baseboards! This week he is back at work. But, we are fortunate that he literally works one stop light from home. He stops by for lunch and bonus breaks to check on Hans. Our house is in the middle of two of the company's office buildimgs, so sometimes he pops in between meetings. It is a pleasant change from his 42 mile commute in Houston. We wouldn't see Kev until 7:30 at night some days... Just thought I'd throw in a little good news. I'm not sure if I've ever mentioned that it's nice to have daddy around sooo much here in Bakersfield!

PAC2 Needs Our Help

This time it's not a donation, but a quiz. Please click here and take this 10-question survey... It's for everybody! Organizers are basically trying to see what needs to be done in terms of Childhood Cancer Awareness. Thanks!

Comings and Goings

E

 Elle and Kelly this weekend!

Hans and his new friends, Jennifer and Brianna from Ono Hawaiian BBQ.  These sweeties insisted on picking up the tab for Hans' weekend chicken order.  Jennifer came in on her day off to treat Hans to his chicken.  How sweet is that?

I just wanted to post another quickie update.  Elle has had her friend Kelly here from TX for a nice, long weekend.  My mom's bff Pat flew down to drive back up home with her.  Us girls drove out to the beach in Ventura on Sunday.  The water was cool, but it was pretty dang great to spend a day in the waves!   My mom n Pat are somewhere in Santa Rosa this morning.  Kelly flew out of Bakersfield today.  It has been great having a house full this summer!   We have a week until school starts and are looking forward to getting back into somewhat of a normal routine.

Hans actually got graduated out of radiation early.  We went yesterday and Dr. Wong said that since the pain in all three sites is completely gone, and the bump on the head is now flat, we can go ahead and stop this round of radiation.  Dr. Wong said he has had a really good dose. Hans has been having some leg pain, but we have been tweaking all the many pain meds, we will keep tweaking and see if we can get down to the bottom of it all.  He is also having a couple of new issues, but we are trying to figure them out before I share too much more about them.  We could possibly know more by tomorrow at our office visit with Dr. Marachelian.  Things are changing so fast. Good, bad and otherwise.  This weekend Hans' leg pain was so bad that he wasn't walking around the house much.  We tweaked the meds and he is getting around!   I'll post more later in the week when I know more. Hans is now finished with the first round of oral Vorinostat.  Dr. Marachelian was checking the research to see how quickly she could possibly get away with starting his second round.  Right now Hans' platelets are still low -  we had a transfusion yesterday. .. 

Thanks for checking up on us.  And, thanks to those of you who donated to Hans' NCCS fundrasing page:)

National Children's Cancer Society Needs our Help

Hi Again, I decided to do something I don't usually do! I have mentioned before that we have benefited from a special organization called the National Children's Cancer Society.  They sent us to Philly many times.  They'd pick up our airfare when we didn't have our airline miles.  This was an amazing, liberating gift!  We were able to give our boy the best of care, without having to break the bank, or without having to look into his big, sea green eyes and say, "We can't get you there."  How do you thank someone for that gift?  I don't think you can.  But, what you can do is step up to the plate when they need you!

  I guess there has been a drop in funding and the NCCS needs donations in order to keep doing what they do best - getting kids to clinics and hospitals and taking care of families going through treatment.  This is right up there with the gift of life, in my eyes. Because, if the kid can't get to the hospital, they aren't getting treated.

I wanted to share this link with you. Hans' NCCS fundraising page If you are so inclined, please consider making a donation. If you are not so inclined, that's okay too. I'm a big believer that we should do what we are moved to do. But, on the flip side of that, I believe that when we are moved to do something, we should actually do it! Even if it's a tiny thing. I came across this Edward Abby quote in a forward of the book I'm reading, "Sentiment without action is the ruin of the soul." That's pretty heavy! But, I think it's neat that action can have a small price tag - $5, even.

I will warn you that another fundraising drive is in the works for the Fall. As I always do, I plan to help drum up research funds for the CNCF at Hans' 6th anniversary of diagnosis, this coming October. Thanks! Let me know if you have any questions.

Hanging in there

So - we are one week into our latest therapy.  Hans has begun the Vorinostat.  He started last Wednesday night. So far, the only side effects are positive.  Labs looked okay today!  We are happy.
Hans' pain has truly subsided somewhat!  He has now completed day 4 of 11 days of radiation to the skull, cheek and spine/chest! 

My mom is in town this week.  Elle is home!!!!  I am just trying to do as much as I can/that has been neglected/while I can with back up here.  Mundane routine things, vet visits, ortho/dental apts for us, the last vehicle registered in CA finally, etc etc.  Hans is being a good sport about all of his treatment, of course!  As always!  He has a new favorite spot to eat in LA...Ono Hawaiian BBQ.  He gets vats of the BBQ chicken to take home.  He has actually put 4 pounds back on!  We are tweaking his oral pain meds and steroids; trying to find the perfect balance is hitting a moving target, for sure.

Thanks for all the love support, texts, emails, FB msgs, calls cards, rides for Elle to Ortho (Larisa), chicken noodle soup and Pizza Tonight from TEXAS via airmail!  AGAIN!  Thanks to Michelle, Matilda, and Kendall for making that happen, again!  Thanks to Carmen and the soup drive girls for the chicken noodle soup for the soul from TX.  Thanks to Hans' teacher Jackie who stopped by with a special ceramics project for Hans and to have her two kids meet him.  Super sweet!  Thanks, everyone.  I am waay behind in getting back to emails and voicemails and texts - but I've certainly read and listened to them all, thank you, dears.

We met with Dr. Araz today - she seemed happy with Hans' response to Vorinostat so far.  Hans' liver panel was great so the drug isn't irritating him.  Like I always say, I'll take all the good news I can get.

Thanks for checking up on us.

Rough News

Hans in clinic today with fellow NB dude Tyler. Thanks to Tyler, Conner and Karen for the mega haul of toys for Hans at clinic today. What on earth are the chances you'd pick out two Bionicles and two Lego sets we don't have???   Thanks!

Today we got some pretty bad news. The scans were difficult to even comprehend. We learned that Hans' dental pain is due to a lesion in the cheek bone area. I had just spotted a bump on the top of his head and we learned that was a new lesion as well. There is a paraspinal tumor, one near the heart, and app ten nodules in the lungs. There are multiple bony mets.

We are absorbing this difficult information. We are also battling the most concerning immediately. Hans is going into yet another round of Emergent Radiation starting Friday. He is also beginning a new therapy tonight. We are starting him up on the oral chemo/biological agent Vorinostat. This is one of the clinical trials we had hoped to hop on but we are going in through the back door. We are doing the Vorinostat on an off-label/compassionate use basis. It seems like it will be pretty simple. We will be giving him just two pills a day four days on/four days off/four days on and the cycle repeats every 28 days. It is also a radio-sensitizer so the effect of the two therapies will amplify each other. The plus- side of using a clinical trial drug off-label is that we don't have to follow all the rules. We can custom fit the drug to Hans' needs and to his urgent timeline. The only down side is that its effects on Hans won't go down officially in the research to help other kids. Please pray with us that this new promising drug, Vorinostat, is just what Hans needs.  Thank you.