Well, maybe we are pulling out of our "stupid week" Hans JUST NOW announced that his back is all better and he's ready to play Just Dance with Elle and Madi. Thank goodness. I managed to set up an appointment with CHLA Dermatology for Weds May 9th. In the meantime, we will treat that thing at home and Hans is doing home- surgery, picking at it with tweezers. Ewww. Anyway, I just thought I had better let you know that it's turning around. I just didn't have it in me to put a good spin on all that. Better now. Thanks for all your hot tips - I have been fielding some fun suggestions for wart removal! And thanks, Shelley, (I suspect), for Lego Ninjago Lloyd. Miraculously, Hans' pain disappeared just after he snapped Lloyd together.

Stupid Week!

This has truly been a stupid week. Hans' back pain did not get better. We took a fruitless trip to the CHLA ER over Monday night. No known cause of pain! We tried to go to the Dermatologist here in town on Tuesday, but they would not treat Hans' wart. They were fearful that his next round of therapy may affect an open wound. It was a stupid run around. Hans missed two days of school Monday and Tuesday, and yesterday and today he only had a short session with Mrs. James. The sucky part of it was I had a feeling, a terrible feeling, that I wouldn't get any answers from the ER, nor any help from the Dermatologist, but I felt like I had to try. Kevin was away at a work conference so things were tricky. What the heck, this is supposed to be our reprieve between MIBG and Antibodies! Bummer. Poor Hans - who knows, we still think he's walking really wrong because of that wart and we are convinced it is contributing to his back pain. We are now trying home treatments (which we were doing before, but now we're onto the next one), and we are hoping that his Onc team will have some ideas. We are pursuing referrals for the Pain Team and other Dermatology options. Mess/UGH! Hans mysteriously perked up yesterday evening and was even up for some swimming:) He and Elle gave us the green light to go out for an anniversary dinner. It's such a change to have big kids so that we can step out every once in a while!

Hans is having some strange symptoms this week. Back pain and a cheek rash. The back pain is pretty rough.  I actually cancelled homeschool today and tomorrow. Hans already has a dermatology appointment tomorrow. He has a pretty bad planter's wart on the bottom of his foot. Tomorrow he'll get that removed and we'll have them check out his rash??? What the heck, I guess it's two steps forward one step back, seems like that's about how things usually seem to go around here:(    We are hoping that the back pain could be from the way he has been walking around this wart on his foot trying to overcompensate... He sure doesn't have a fever...

So, I was going to talk about Antibodies some more. Here is a neat, readable, brief article on the findings from back in 2009. The antibody, CH14.18 is actually "monoclonal" aka made from mice! "Ch14.18 binds to a glycolipid molecule called GD2 on the surface of neuroblastoma cells, which provokes an immune attack." I think of it like this: You introduce this substance (CH14.18) into Hans. CH14.18 finds NB. The immune system is known to attack this forgein substance. The next step is that the immune system somehow gets trained to recognize and attack the NB even without the presence of the antibody... Wow, huh? The therapy will consist of 5 rounds over the course of about 5 months and is planned to entail about 7 week-long inpatient stays. There are other agents involved, and some risks/side effects are possible. I guess I'll save that for next time - I need to hang with Hans today!

Thanks for checking up on us.

Antibody Therapy

Elle took this pic yesterday. It is gettin' hot in Bakersfield so the kids are starting to use the pool:)

I am starting to field quite a few questions from friends/family about antibody therapy. So, for the next few posts I'll go into it a little bit.

Antibody Therapy (as defined by the National Cancer Institute) Treatment with an antibody, a substance that can directly kill specific tumor cells or stimulate the immune system to kill tumor cells.

Has Hans ever had antibody therapy? Nope.

Antibody therapy has been used to treat Neuroblastoma for probably 20 years plus. But only fairly recently has antibody been windely available for all. Previously, you used to have to travel to a special center, like MSKCC in NYC, or fall into a particiular open clinical trial if the timing was just right at your hospital.

 We have considered traveling to MSKCC in NYC to do antibody therapy at a couple of junctures. We considered it when Hans was first in remission in 2007. But the timing wasn't quite right. We became aware of the therapy there just a little bit too late to make it happen. We considered it once again when Hans relapsed in 2008, but at that time, we went with MIBG therapy, and Hans went into his second remission.

In 2009 or so, researchers made the only significant change to Neuroblastoma front line therapy in a decade. Newly diagnosed kids now recieve antibody therapy as part of the standard treatment protocol. Hans missed that window, as he was diagnosed back in 2006. Stage IV, High Risk Kids now go through: 5 rounds chemo, stem cell harvest, surgery, radiation, stem cell transplant, and antibody therapy. Dr. Russell always said that NB therapy is the MOST BRUTAL cancer regimine for any cancer - pediatric or adult. And that was pre-2009. And that is not taking into consideration kids who relapse and what they undergo.

The idea is that antibody therapy works best once the cancer has been treated by other methods, and is all gone, or almost all gone. These antibodies became available to kids reaching or nearing a second or higher remission in just 2011 through a clinical trial. Unfortunately, Hans would be excluded from this trial due to his need for stress doses of steroids when facing illness or injury. Our doc has petitioned the FDA for Hans to be provided a special excpetion from this exclusion. For that special effort, we are forever grateful and indebted to her.

I will share more in the next couple of posts of what antibody will entail for Hans and what it means for him to do it with his Adrenal Insufficency, and also WHY in the world we'd want to do this to him. Yes, I'm getting that question. Do you really have to do this?

"Near Complete Response"

Hans had a "Near Complete Response"! aka 2 MIBG therapies in San Francisco got rid of all but just a teensy spot of the cancer left in that stubborn spot on his skull. No more cancer in his hip. No more cancer in the vertebrae. Thanks for your thoughts, prayers, and good vibes, people! Next stop... Antibodies in Los Angeles, we hope. We found out today that Hans approved for the anitbodies by the National Cancer Institute (NCI), but now he also has to go through the hoops to be approved by the FDA and CHLA's Interal Review Board (IRB)... The time line is to have Hans on the therapy, off label, by mid May. Hans would be excluded from the formal trial due to his Adrenal Insufficency/steroid usage in stressful situations. We shall see.

In the mean time, we are dropping down to counts once per week. He is making a slow recovery from his stem cell infusion on 3/6/12. Platelets were 44 this week, HGB in the 10's and ANC was about 4000! The docs are pleased and will hold off on a second stem cell transfusion until levels flatline or decline.

That's about the most coherent statement I can come up with tonight. Not to whine, but rather to document this event for the future, Hans got very sick today at clinic. As soon as he started to sip on the oral contrast, Hans started to get queasy. He proceeded to get pretty sick and vomit several times today. We had to forgo the oral contrast for the first time:( He was so sick/out of it that we had to bump the CT scan until late in the day. Oh well, we got all the scans done. We got the results. I don't know if it is random, or if he's going to have some kind of sensitivity to oral contrast from now on. We are wrapping our minds around Antibodies now that it finally appears to be a reality to us. More on all that later...

Scans this week

I haven't been posting as much because Hans has been doing better!
I never got Thursday's lab results and today's labs are on hold today because we have to be in LA tomorrow and Wednesday for scans. We appreciate your thoughts, prayers and good vibes for these scans. Th

Hans has one complaint, he says there is a little spot bothering him above his right temple, so that is frightening. But, I can't really feel anything, so I'm just crossing my fingers and praying like mad. Not only will we get scan results, but we will also find out if the FDA has approved to enroll Hans on a certain special therapy... I'll keep you posted. Tuesday we have the CT and the MIBG injection, Wednesday we have the MIBG scan and then meet with Dr. Araz Marachelian for the new plan. It has been such a nice long break, but I feel like I'm ready to see her, get these scans and make some treatment plans.

Thank You Letter to the NCCS

Cousin KK somehow tricked Hans into smiling for this one:)

I was recently asked to share our experience with the National Children's Cancer Society. I am reposting here in the spirit of awareness and appreciation! It's so wonderful that organization like this exists out there for families. If you are a family interested thier support: Click Here

I am so thankful to the NCCS! People have no idea the cost of the impact of a Pediatric cancer on a regular little family. When Hans was first diagnosed, five and a half years ago, we had no idea we'd be fighting this hard for this long.
Emotionally, the impact is enormous. Hans has had two remissions that have lasted about a year in his fight against Stage IV multi-relapsed Neuroblastoma. In all of that other time, we have been actively, aggressively treating his diesease. In fact, even when he has been in remission, he has been in treatment.

What is the financial impact? I truly do not keep exact records. I haven't figured out how to go back to work since Hans was diagnosed, but I had always figured I'd work at least part time once my kids were school aged. I estimate the financial impact averages $20,000 per year. Hans has recieved treatment in 4 hospitals across the country: Texas Children's, Children's Hospital of Philadelphia, Children's Hospital of Los Angeles and University of California at San Francisco. Since 2009 or so, the NCCS has been helping us with airfare and travel expenses! What a blessing. Can you imagine what a relief it is to be able to book travel to save your boy and not have to worry about breaking the bank?? Even for a family that is relatively financially fortunate, there is just no way to prepare for this set of circumstances.

Neuroblastoma is a difficult cancer to treat. Sometimes a child's best treatment option may be located across the country. I cannot imagine having to cross those treatments off the list for financial purposes. I don't believe we would. We'd sooner go bankrupt.

When Hans was diagnosed in 2006, the community came out and threw a Run for Hans raising $20,000 for his medical care in 2006. The local high school later adopted him through the Sparrow Clubs program and raised another $20,000 for medical care in 2008/2009. Our friends ran an airline Miles Drive, and almost one million miles were donated for our family's medical travel! Currently, The NCCS provides help for us to travel to care. It truly takes a village and the support that we've recieved has been one of our (many) miracles. We try to give back! We've been involved in research fundraisers and are part of a group of families that have raised $100,000 for the Children's Neuroblastoma Cancer Foundation. It's a beautiful thing, how we've been sustained and supported and have been able to pay it forward all at the same time.

The way I see it, Hans and his cohorts are on the front lines of figuring this cancer out. They are enrolling on multiple clinical trials for researchers to "crack the code". Their medical care is not only trying to save these kids, it is an investment in making treatments safer and more effective for future waves of the diagnosed.

Thanks (NCCS) to your volunteers and supporters. You truly are helping to make life livable and possible in some of the most extreme circumstances a family can face. Below is a summary of Hans' treatments (thus far). Today Hans is actually doing quite well! We anticipate good news or very good news from his next set of scans. Hans is schooled through a homebound program but he goes onto campus for computer class.

From: www.hansjourney.blogspot.com
Treatment History Diagnosed Stage IV High Risk NB MycN Amp 10/25/06 at (TCH) 5 rounds of chemo therapy, Stem Cell Harvest 11/06, resection surgeries in 1/07 and 2/07 Stem Cell Transplant, Radiation Spring ’07 NED July 07 Accutane through Fall 07 and Winter 08 Relapsed 5/08 bony lesion in rt. Arm 2 rounds of Topotecan/Cytoxan with Zometa, Radation to site Lesion resolved Treated with 3 more rounds Topotecan/Cytoxan/Zometa two spots appeared, one on the dome of the liver and one on the left arm 3 Rounds Irinotecan/Temodor Clinical trial MIBG therapy w/ Vincristine and Irinotecan at (CHOP) 11/09 NED Jan 09! 13 rounds of ABT751 at CHOP 12/10 relapse - sm bony lesion on skull Clinical Trial MLN8237 (Millennium) at CHOP for 25 rounds. 7/11 family moved to California, progression of disease in the skull, and bony lesion on the hip and possibly one vertebrae 8/11 radiation to skull (2 soft tissue and bony lesions) and 3 rounds of Irinotecan/Temodor/Zometa soft tissue lesions responded, bony lesions persisted treated at(CHLA) 10/11 Progression of disease to two Lymph Nodes in neck ICE Ifosfomide, Carboplatin, Etoposide for one full dose, subsequent 66% dosing for two rounds. Possible progression in the chest (later not supported) moved us to two additional rounds of radiotherapy MIBG with the Iodine 131 radioactive isotope in January and February of 2012 at UCSF University of California at San Francisco. Scans in April '12 will determine the next course of therapy.

Road Trip

The four of us in Scottsdale, here with Kevin's Grandma Jean

Kevin and Elle yesterday at the Grand Canyon

Since Hans was doing well, and the colds Elle and I had weren't too bad, we were able to pull off our tentative plans to come out to Arizona to visit much of Kevin's side of the family. It's about an 8 hour drive from Bakersfield, but oh it's so nice to me not to have to fly. I think I OD'd on flying with all of our trips to Philly and I am happy to drive - I know most people think I'm nuts!
We got labs at PCH Thursday and Hans was still doing about the same... Plts 30, HGB 10, and ANC 2688.
We were able to do a little hiking, shopping, swimming, and just generally lounging around and eating and visiting. We got to see Kev's grandma Jean, as well as Aunts/Uncles Holly, Debbie, Michael and Mark, and cousin Kalene. Hans loves the family time, as well as getting in a few good licks from the two boxers... Gabi and Harley. Thanks to everyone out there for spoiling us. (Especially Elle with all the shopping!!!)
Everything was going so well we decided to go check out the Grand Canyon on our drive home!! We were all happily peering over the edge of the GC yesterday. We were also happy to see all the enormous ELK just hanging around the park!

Thanks to Ezster and her sweet family for taking care of our pets for us while we are away! xoxo

Labs, okay I guess???

So Hans' HGB is hanging out at about 10. The platelets are about 26:( But the ANC is a good 3000!

I guess we'll take it. I'm starting to wonder if we'll need more stem cells... We got "1" and they were on the fence if we'd need to give "1" more.

Hans seems to be doing really pretty relatively well these days! We are all glad to be on spring break. Got some plans - so next post I'll let you know if it pans out (you never know around here...)

Thanks for checking up on us!