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.

So, more of the same - Hans is still struggling with dental pain, but we have somehow been able to manage the pain at home. I am thankful for his pain team! We have kept him home:) I HOPE they can get him in this week and fix him up. We have scans tomorrow and Wednesday. Elle's camp is done. She had a great time, and she is spending the day with Grandma Kathy today. She and my mom will make their way back to Bakersfield via road trip either Tuesday or Wednesday. I'll update you more after scans.

home

Hans was discharged today. His vitals settled right down. It seems that a big dose of Hydrocortisone did the trick. We struck out with the dental OR slot for tomorrow. BUT, it may just work out for Hans. We are using an antibacterial mouthwash, and we'll give his jaw/neck and mouth a break after he completes this round of xrt tomorrow. We are now hoping they will get him into the Dental OR next Weds. He has dental pain flares off and on, but we are trying to stay on top of the pain (meds, warm baths, topical ointments, mouth wash, tooth brushing and rinsing!) That's the scoop for now!

Toothaches, fever and admit

So we've really been barely hanging in there. I was waiting to post until we saw the doc today. Poor Hans has had a toothache! Of course it started almost as soon as we got home Friday night. Of course it pretty much dominated Hans' weekend and ruined his appetite. He hung in there though. It wasn't until today that he had a bit of fever and some other symptoms related to pain and being stressed (high heart rate, low sodium) Etc etc... So here we are. We are hoping to get in for a Dental OR slot on Friday. Please cross your finger for us, that would be great. I am framing it that I'd rather be getting admitted on a Wednesday when we )need to be here on Thursday and Friday than to have to turn around and come back in on Friday night when we are not due to be back til Tuesday. My other big concern is that with daily sedation and now tooth pain Hans isn't eating well at all and is now at a new all time low weight. He has got two more days of radiation and then scans next week. We'll start our new trial as soon as we can. X no of days will have to pass since last radiation. X may vary by trial. Please pray that he winds up on the best treatment for him!

TGIF

Thank goodness this week is almost over. It is sure taking a lot out of me for some reason. Hans and I have been commuting for radiation with sedation each day this week. We are thankful that they jumped right on treating it but I guess the whole gig is wearing us out now! Hans has to fast all morning, he goes in for the procedure about 11 or 12 and then he can eat when he wakes up an hour or so later. We are not sure why but Hans just isn't eating as well. Poor sweetie! No more fevers! No more ER runs. His neck is still enlarged, but I think it is better than it was last Friday (that was the worst day). I don't know what my problem is but my neck is hurting too! It is probably just the power of suggestion of looking at this thing:(. Kev said his hurt too last week. Who knows?? It's just making this week all that much less fun... Sigh. We are looking forward to the weekend for sure. Elle went up to WA this week, a few days ahead of her camp. She was actually a little reluctant to get on the plane and leave Hans. We just told her that we'd get her right back here if we needed her. Hope she is having fun. She is gonna go see a movie with Grandpa Oscar today, thanks btw! Your b'day gift arrived Monday. We saw Dr. Araz on Wedsnesday. She looked at Hans' neck and said that we'll see but we may want to continue with the XRT thru next week... We shall see huh?

We made it! Hans got another dose of IV antibiotics and a stat blood chemistry and we were sent on our way to celebrate Hans' big day! We ran off the floor! Hans led. We arrived at the Chuck E. Cheese parking lot at 1:30 pm on the dot and the party started at just 1:30! Hans' what 89th miracle as my dad said. It seems this boy has been offered miracles in proportion to his numerous challenges. The miracles didn't stop there! Even though we didn't have a class list to invite Hans' pals from Ronald Reagan Elementary, we had a table full of neighbors, our Cazares NB family friends, and some of Elle and Hans' sweet friends from Earl Warren Jr High and Stefano and Heidi! Happy Birthday Hans! Our discharge sure saved the day. In other good news... Hans' neck seems to be responding to the IV antibiotics. No more fever:) Neck appears smaller to me! Thankfully, magically, Gramma Kathy and aunt Holly and Elle had shopped for party decor and party favors, and Elle had baked a perfect number of cupcakes. I had sort of reserved Saturday afternoon for all of that but it didn't exactly work out like I had planned. Thankfully it was all taken care of. A little too reminiscent of last year - but the opposite. We were stuck in Philly with Bad News on Hans' birthday - waiting to get on a trial. Our dear friend Dawn threw us a surprise Chuck E B'day in New Jersey and Hans later wound up heading to the ER at midnight. Waking up or going to bed in the hospital is not the best B'day tradition... Thanks, too, to my kids who somehow spoiled me last week with a pretty Pandora Bracelet. It's gorgeous - lucky mama! Thanks, Ashton for the glassybaby gift! Gorgeous. Thanks for all the cards and packages that have come in from the Tierney's, Kleins, Pati and Tom, Susan, Grandma Stephanie, Tommy, Holly and Michael, Mark and Debi,Grandma Jean, Gramma Kathy/Dale Uncle Quinn, , "Auntie" Kerry, Godmamma Roxie, the Smileys, And the gifts from all the party goers! And, oh my goodness, thanks Belen. She somehow got the Chuck E Cheese manager's ear for 5-10 minutes and Hans' party was comped! Have you ever heard of such a day? xoxo

Er

We had to take Hans into the ER yesterday for fever:( He had a really high HR and a really high white blood count. It could be that the lymph nodes are getting infected. He seems to be responding incredibly well to IV Antibiotics and blood and platelet infusions. His heart dropped from the 150's to the 90's. I am pleading our case for a birthday furlough if it is at all safe to do so! We hope that we will soon be on the road home to have as happy a birthday as possible!

More XRT! :(

Oh boy, so here we are back in it already! Hans was having neck pain and swelling, and long story short, he is being fitted in for emergent radiation to his neck. The lymph nodes at his right neck have swollen disturbingly and significantly. I am going to be brief here because I’m standing at a gurney waiting for Hans’ XRT simulation and CT.

We are on it! The team is on it. We are relieved that they are taking excellent care of our special boy. Every boy is special, but this one is our special boy. There is nothing like the love that comes out of that little body and heart of his. There is nothing like watching your little son with his peaceful determination to go about the business of fighting his tumor. The good news is that the NECK is the only area of growth. Elsewhere the CT scan showed “Near Complete Response”! This boy is quite a special little puzzle. His tumor is such a zombie!

 The likely plan: Platelets today, simulation and CT today – With Sedation – the position he has to hold is just to difficult to do awake, even for Hans!
 -8 days of XRT with sedation to the right neck at a rather high dose.
 -Next weeks' scans are pushed back to allow for this therapy.

These are the current prayers of my heart: Hans will find the next perfect therapy for him in just a matter of weeks that will provide us with smooth sailing and quality of life. Counts will come up, and the tumor will leave us alone!

Getting Tanked Up in Bakersfield

So - sorry, I haven't posted much. We've mostly had a mellow week! My mom went back to SEA, Elle is off camping at Morrow Bay with our neighbors. (Thanks, Mars!) Holly and Kathy are on their way to come see us:) Kevin is busy working away. Hans is getting blood right here in Bakersfield. It's nice to be able to take a 15 min drive for a change.

 Hans has been a little mellow low energy. He has had no counts. Last week he was: Plts 33 (after transfusion), ANC 0.00 and HGB 8.5. On Monday we had good and bad news. The ANC made an appearance of 500 (thank you stem cells!), but the platelets dropped back down to 3, and the HGB is down to 8.1 The platelets and red blood cells take longer to engraft than the white blood cells. Our concern right now is the lymph node in the neck:( They didn't radiate that spot and it seems to be growing a little bit and bothering Hans some all of a sudden:( We have to wait til platelets come up before he is eligible for more treatment. That's what the stem cells were for last week. This is a slightly scary situation. We must wait for counts to come up, while at the same time, hope the NB behaves itself. My prayer is that the good blood cells will flourish, the bad NB cells will halt, and that the very best treatment for Hans will reveal itself. We are looking at a couple lower dose from-home options such as Fenretinide, Vorinostat, or DFMO. Scans are scheduled for next week, but they may actually get pushed back if counts dont' come up some. Since you can't treat until you have some counts, you don't want to do scans too early... It's tricky.

In the meantime, Hans is ready to celebrate his birthday on Sunday! He'll be nine. He has some funny little rules for us once he turns nine. No more calling him "sweetheart" and "Baby Bear"! We'll try;)...

Here's Hans' salute to the USA with a California Candle. He had a pretty great day yesterday. He grilled for our little house party of us, my mom and our neighbors, but opted out of swimming to conserve his energy for the night. He was up for a little Just Dance, a bike ride and then a good solid hour and a half of setting off fireworks! The Fourth is right up there with Christmas, his birthday and Halloween night. Good times! He's doing pretty well. Looks a little better since the stem cells. But he is having an occasional ache and pain. We'll start going in for counts twice weekly, and I'll probably go back to posting on the days we get results.

Special Delivery

We are sitting here waiting for Hans' stem cell infusion. Thank goodness, because Hans sure needs them. His counts have dropped down to nothing after a month of chemo and radiation. He's at 10.0 with HGB, so that's not bad, but his ANC is 0.00 and his platelets are less than five. His weight is coming up some, but it's still low at 15.5kg:( He's been on an appetite stimulant for ten days, too:( But - in the Good News column: He is still at zero pain! We're on track to be off of our pain meds within a week. We have been pretty worn out after our month of June. We logged 3,000 miles going back and for for radiation. Now we get two weeks before scans to kick back, enjoy summer, and watch Hans come back to life! He has really just needed time to mellow out and recover this weekend. Friday night we got a special delivery from Michelle in TX. She shipped Hans' all-time-favorite pizza fixings courtesy of Kendall at Pizza Tonight in The Woodlands. Kevin and Hans had a blast making the pie on Friday night and it tasted almost as good as delivery from Pizza Tonight! What a sweet and special effort to put some meat on this boy's bones. We're trying!!! Thanks, too, to Claire and Fam for the Star Wars 4-in-one transformer! We didn't even know they existed. We are enjoying my mom's visit and look forward to a safe/sane 4th.