**update 3/30 8:21AM: looks like we can administer Gemzar and radiation at the same time, so that makes for a much clearer path forward**

At a little after 8pm tonight, Melissa brought Max down to Children's as the pain med (Lortab) wasn't doing the trick. I cannot tell you how frustrating it is to see your child cry in pain and know that you can't rub it away, that no amount of natural endorphins will take over and make the pain go away. He will receive morphine tonight while coming up with a pain management plan that works.

Max's catecholamines continue to climb. Not a good sign. Last Monday they were VMA 37 and HVA 42. His neuroblastoma is likely progressing. However, other markers which help to measure metastatis, are either normal or falling.

Clearly, the irinotecan/temodar combination isn't working. Not entirely surprising but deflating nonetheless. Plan B (maybe should have been Plan A all along) is to try Gemzar/Velcade. The trouble with this combo is that we can't give Max radiation (to his legs for example) while he's receiving Gemzar. So it's an 'OR' solution versus an 'AND' solution. I hate 'OR' solutions in cancer. Another possibility may be to go back to his old standby cytoxan for a week or two while we radiate his femurs to take care of the pain. The problem with cytoxan is that is what gave him the bloody pee not so long ago.

Max continues to take:

Gemcitabine (perhaps starting on Thursday)
Velcade (perhaps starting on Thursday)
Nifurtimox - oxidative stress
Zometa - increase bone density
Rapamycin - mTOR inhibitor
Tetrathiomolybdate - lowers IL-6
Genestein - AKT inhibitor
Celebrex - COX-2 inbitor
Glutamine - for Celebrex (gut protection)
Skullcap - lowers IL-8
ImmuniKinoko/AHCC - elevates NK funtion
Tauroxicum - lowers IL-6 and c-reactive protein
IP6/Inositol - lowers plasma VEGF
Super biocurcumin - lowers IL-6
Zinc citrate - lowers ceruloplasmin
Calcium - For Zometa
Vitamin D3 - For Calcium


Deb's Blog...

I stumbled upon Deb's blog (photographer). She has such wonderful things to say...

Making memories

We had a wonderful weekend away from neuroblastoma. I didn't turn on my computer once and didn't read a single email or look at a single website related to the disease. Every once in a while you have to turn off and focus on something entirely. In this case, it was Max, Nic and Hannah.

Max started off the weekend with a toy-shopping excursion Saturday morning where we purchased a model to build of an A10 Warthog. We then went to meet up with his Cub Scout Den 6 and walked to Fire Station 24 and met with the wonderful guys there. Afterwards, the Myers (den leader Steve) invited the kids to stay and play in the backyard. They all had a wonderful time and it was the best therapy Max could have had after 3 tough weeks at clinic/in-patient, with more to start on Monday as cycle 2 of his chemo begins again.

Sunday evening, we met with Deb Schwedhelm again to have pics taken of the kids. The results speak for themselves... wow ;) Thank you Deb, thank you, thank you, thank you...

Nicky, Max and Hannah

The face of neuroblastoma




Deb (by Max)


Springed Sprung

He's out. And on the way home. Time for a good weekend and some time with his buds. Tomorrow, a trip to the local fire house with Cub Scout Den 6. Who knows what else may happen? Probably not many chores will be taken care of this weekend. Time for fun. Thanks to all for your help this week, especially my dad (papa) and Melissa's parents (nana and tata) for watching the kids and stepping in to help. Thanks Leo for the McGills hat and DVDs, and the standing offer of a Pads game. Thanks Sue Stein for the white bean soup... mmmm... dinner tonight. Thank you Lisa Sturt and Max's class for all the awesome decorations, the cards and the jokes! Thank you to everyone I forgot to thank (and I know there are many)!

Logging off for 48 hours or so...

I don't know what my purpose in life is, but I'm sure it doesn't include eating broccoli

I had no idea what to title this post, but I found a newsletter from Nic's daycare teacher which had a cartoon that pretty much made sense to me this morning.

First, Max may be coming home today. I'm cautiously optimistic on this point and am not allowing myself to get too excited about the possibility. Nor am I telling Nic, who is suffering from some sort of fever too and is miserable without his mommy.

Second, Austin Melgar passed away last night. I won't attempt to eulogize him here, but for those of you who followed his story, his was a valiant and incredibly courageous fight against neuroblastoma. Ultimately, it appears Austin passed away with no measurable disease, when just a few months prior had the type of raging, out-of-control progression relapsed neuroblastoma parents dread as almost 100% inevitable.

We may never know what cured Austin, nor what put him into the coma that preceded his passing, and at least for now it doesn't matter to dwell on it. Please think nice thoughts, pray, or just be extra nice today to a stranger in honor of Austin's life, his fight against neuroblastoma, and his family.

If Max gets released today, he'll be able to join his cub scout den tomorrow for a fire station visit. Hannah is at girl scout encampment all weekend long and is terribly excited at the prospect of sleeping with her girlfriends for two nights straight.

More, later.


Keeping Max Busy at the 'spital

This has been a relatively easy inpatient visit for Max. Somehow, he's been blessed with several visitors each day all spaced out perfectly and this has broken up the incredibly long and boring days for him. In addition to his incredibly entertaining mom (me!) he's been visited by Aunt Randee, Nana, Alexi & Mrs. Court, a magician, Sam's little brothers (andy & charlie), Angela from ChildLife, Daddy (sleeping over with Max tonight) and Hannah & Nicky. Not to mention the constant drop-ins by his daily/nightly nurses giving him meds and making the beeping stop.

I have to say that his favorite visits have been by his teacher, Mrs. Sturt (sorry to hurt any feelings, but you'll read why). Mrs. Sturt (Lisa) brought cards from his classmates one day that said how much they missed him and had great pictures drawn on them. Today she brought an envelope full of painted fish from his friends in class, the PRINCIPAL!, and the ladies in the front office. We hung the cards on the wall and the fish from the ceiling. The room looks great!

Yesterday morning and several times today Max got a little melancholy looking and said how much he wished he were at school with all his friends. "I miss school, mom. I wish I could see my friends." It just makes my heart ache. I didn't even remind him that he had a Boy Scout Pack meeting tonight - the Pack is starting to paint their boats for the Raingutter Regatta. Max will get to paint his in his room at the hospital.

Max is feeling okay and most of the time his spirits are good. He's been nauseous, tired and certainly doesn't leave the bed, but he's not tired enough to nap much during the day so the stream of visitors has been wonderful.

When will Max be able to come home? I don't know. I can safely say that he'll be inpatient through Saturday. If his cbc's continue to be high and his fever stays low, he could be a candidate for home IV antibiotics. It would be great to be home for the weekend.
Max having a great time at school.


3 days

Just a quick update. Max's blood culture came back positive so he's on antibiotics, 3 days in-country minimum, measuring blood cultures every morning until negative.

Two weekends ago at Legoland.

No "Bye" week

Max went in to the hospital last night - he started running a fever in mid-afternoon and by 5pm was spiking 100, and throwing up = automatic check-in to hem/onc ward at RCHSD. Melissa said he was doing better last night, hadn't thrown up again after leaving the house, and was resting comfortably. As of 11 or so last night blood numbers looked good so he had not started antibiotics as why give him anything that's not needed. Depending upon this morning's blood labs, Max may be discharged or may stay another night.

While we were hoping for a bye week, away from clinic, off IV chemo, as normal as possible, it hasn't started out that way but hopefully it will end that way. Max also had a complete breakdown yesterday. His foot fell asleep in clinic at 11am, which apparently set him off and he cried off and on for an hour and a half until he fell asleep. Obviously victim of whatever made him spike the fever and throw-up but beyond that, he's had a rough two weeks and deserves a break. We're doing everything possible to make that happen.

I also owe an update on last week's MagicWater Project meeting but will defer until later.... duties call.


Week Two of Chemo

Max is holding up pretty well so far under his current treatment. He's half way through week two of the irinotecan chemo and his spirits and energy levels are great. (He did receive a red blood transfusion Monday to allow for good energy!) Only set back is the nausea. Yesterday he threw up as we arrived in clinic and again at lunch at school. He feels really yucky when he wakes up every morning, which is surprising to me as I'm up at 5:00am giving him his anti-nausea meds. By 7:00 when he wakes up they should be in full swing. Oops - one more set back is the chemo-induced-diarrhea. It's not out-of-control (hope to keep it that way) and we're giving Max atropine M-F in clinic, suprax 1x day at home, and 30ml Immodium daily (the maximum dose). Can you imagine how backed up you'd be?!)
What's left of his hair is still in. I don't know how long that will last. Two straight weeks of chemo plus he'll start 10 days of radiation beginning Monday, April 21. I think they're looking at treating his lower spine S2-S3 and his femurs (thigh bones).
Max has been experiencing a lot of pain in his legs over the past week. Causing limping and lot of "Ow, Ow, Ow!" with a furrowed brow. This would indicate a lot of pain as Max doesn't complain about pain to much. We were giving him Tylenol w/ codeine but it didn't help much. We've moved him up to decadron per Dr. Sholler. The pain could be caused by cancer aggravating the bone or by the chemo killing cancer cells. 180 degree difference and no way to tell either way.
Max is going to have to experience GCSF shots again to boost his white blood cell counts following the end of this chemo cycle. We'll start this weekend. Gee - I can't wait. Max was a total trooper last time we did these -- they are very painful shots, one every night in his thigh for about 5-7 days. The actual poke isn't felt thanks to numbing cream, but the medicine stings or burns as it's pushed in. Max and I do this alone - yes, I give the shots and Max sits still. His incentive is a prize. We used to give him a Hot Wheel after each shot but he's burned out on those. I've got to search for a new $1 prize and stock up. The GCSF shots aren't just tough on Max: His cries really upset Hannah and I'm sure Nicky's going to be affected by it.
Yeah - those other two kids live this cancer, too. They're both so helpful: Nicky likes to bring Max's IV pole when he sees me filling up Max's feedbag; Hannah helps crush pills and mix the meds along with being mini-mommy to Nicky when we need him distracted. There's so much time and attention focused on Max that I really sorry for them. I make a big deal out of small owies - lots of medical attention! And try to make time to dote on them, too. It's a sad but true fact: they're second class siblings.
In review of Max's treatment:
  • Last week and this: clinic for IV chemo, 2 blood transfusions.
  • Next week: radiation and UCSD Cancer Center, CBCs at clinic, transfusions if necessary.

Max is tired of being here at clinic and just wants to go to school with his friends.


Cause and effect

Last weekend (Kustom Kar show at Del Mar fairgrounds)

This weekend (Legoland)


Pre-Weekend Update

Since Max started his new chemotherapy protocol on Monday to try to stop the progression of his relapsed neuroblastoma, I thought the time was right for an update. If you need a refresher on what he's taking, read this post.

The most recent problem, blood in Max's urine, resolved itself on Tuesday morning. I got a phone call at work and it was Max, totally excited that he had clear, lightly yellow pee! So far we haven't seen drop of blood (and believe me, we're looking) so perhaps that fun is behind us.

Overall, Max is tolerating the irinotecan and temodar extremely well. Other than throwing up on Monday, he's had little or no nausea and we're able to continue with the Peptamen feedings throughout the day and overnight. He's getting IV hydration at night (his pole in his bedroom now has two pumps - one for the g-tube and the other for his port catheter access), so we're not giving him as much Peptamen at night. Consequently Max is not gaining back the weight he lost in February when he had the stomache virus. He was up to 21.9kg on 1/24, down to 19.7kg on 3/3, and now he's halfway back at 20.8kg today (remember, 1kg = 2.2lbs). Amazing - how easy it is to lose weight and how difficult to gain.

We met with his radiation oncologist Dr. Murphy on Tuesday. The plan is to try to radiate both his S2 & S3 vertabrae as well as the nodule in his lung (only about 1cm according to Murphy). Radiation should start next week though we're waiting on Max's primary oncologist, Roberts, to return from vacation so that he and Murphy can agree on this plan. Luckily for us, after extensive negotiations between myself and Max's cancer cells, they have agreed to stop growing during this time realizing that it would be unfair to keep doing so while Max's docs are on vacation. See, cancer can be nice and reasonable sometimes.

Max's blood and urine counts are stable and in some ways improved, which is good but also leaves us wondering if something is causing the positive impact or whether it is natural variability. For those of you who follow this stuff, here's some recent trends (sorry for lack of tables in blogger):

4/1 -LDH 1180
4/1 - VMA/HVA 24/23.8 (on 3/27 was 18.8/21.8, so not trending the way we want it)
4/4 - platelets and RBC transfusion 4/7 - LDH 804
4/7 - C-reactive protein 0.5 (was 0.8 on 3/13, looking for <0.3)
4/7 - 1 oz calf liver at night (for RBC growth stimulation)
4/9 - LDH 840
4/10 - LDH 927

The rest of the blood tests that we do in consultation with Dr. Belanger, our naturopath, should be coming in the next 4-5 days. I call these our 'leading economic indicators' and they provide further evidence as to what is happening with his cancer.

Max gets a break from chemo this weekend, then starts again on Monday for the 2nd and final week of this round. Then he has a week off, then two weeks on again. During the 'Off' weeks, he will be taking rapamycin. See the plan if you want further detail.

We will be surprising the kids with a Legoland trip tomorrow. Since it's right up the freeway, it's quite easy to do, and the park is relatively uncrowded compared to a Disneyland or equivalent.

Will's dad, Pat has managed to convince Clear Channel Outdoor to put up a billboard (and perhaps up to three) in the greater Boston area promoting MagicWater and driving them to the website where we hope we can convert their curiousity into generosity. You can see the concept for the billboard here, as Pat has made it the header on Will's blog.

On Thursday we will be holding the Spring MagicWater Project meeting here in San Diego. As much as these meetings provide a foundation for discussing and funding new research and effort to bring treatments that will save our kids to reality, they also function as a sort of support group. I'm looking forward to Thursday and being surrounded by a bunch of smart, committed, compassionate people who share a common vision of saving the lives of kids whose only fault is that they were unlucky enough to be struck with an orphan cancer like neuroblastoma that receives so little attention.

Thank you to everyone who has sent supportive and informative emails, phone calls and letters. We really do appreciate all the kind thoughts and suggestions. If we're delayed in responding, please "remember that life's a great balancing act and will you suceed? YES! you will indeed. (98 3/4 percent garanteed). Kid, you'll move mountains!"


MagicWater press release

MagicWater put out a press release today announcing the projects it had funded in the first quarter of 2008 that will help find new treatments - quickly - for kids facing relapsed and difficult-to-treat neuroblastoma and medulloblastoma. You can read it online here, or download a PDF of it here.

Max started his new treatment protocol today. He got sick on the way home, but that was it. Perhaps an aberration. That's cancer parent optimism in case you missed it.


Hospital visit, new plan, cherish them

Max is being released from the hospital this afternoon after a semi-emergency check-in last night due to the blood and clots in his urine.

Yesterday at school the clots escalated to unimaginable size - small earthworm size. Apparently he passed three of them at school throughout the day, which he told us about after passing one at home that Andy had to help him with. There were tears and cries. It was simply awful and I don't know how he got through it at school. Earlier in the day school had called me and his teacher emailed that he had a lot of blood in his urine, but they missed the clots and Max failed to mention them until bedtime. (BTW - his urine looks like a blood donation - there's no urine.)

At 7:30pm Max and I were packing for an overnighter. We checked in around 8:30 - one hour past his bedtime already (he had fallen asleep during the car ride to the hospital) and he somehow stayed awake until 10:45. During this time he had all his vitals checked, port accessed, gave a urine (blood) sample, etc. He finally gave in and fell asleep. 30 minutes later we had to wake him up to insert a urine catheter to help pass the clots through his urethra. Not a walk in the park for a little kid nor his mother who needed to hold his hands and block his view.

His CBCs were low on HGB (8.1) and PLT (35) and he received a transfusion for each overnight while he slept.

During the night we found that the stupid catheter was not doing its job AT ALL. The clots wouldn't go through it and instead passed alongside it causing way more pain than he had without it. I had them give Max morphine after he went through that a second time and it was good thing. While waiting for the nurses to get it through the doctor's head that I insisted they removed the damn thing he had a third clot push passed - the morphine barely helped. There was blood all over the bathroom, towels, blankets - I left it all there to get the point through a little faster. I told them that I would not go through that again if it were me and I am not letting anyone make my child go through it again either. And, no, you can't take this one out and replace it with a larger one. It was removed.

At 9:15am this morning Max went into the OR for a cytoscopy. The urologist told us that he saw no visible evidence of cancer lesions, however, the blood that was flushed out was sent to pathology along with some small tissue samples of the bladder wall. He said the bladder looked consistent with what he would see in someone who has damage caused by something like chemo (cyclophosphamide). There is no medicine to help Max heal from this - only time will do the job. We will continue to see blood is urine until such a day comes when he is healed.

In the meantime, we are seriously concerned about his blood counts dropping after being off the oral low-dose topo for nine days. It is possible that the topo is still having effects on his marrow.

On Monday Max will start the new chemo treatment plan and he will also be set-up to receive more radiation. We are very frightened that his counts will bottom out and treatment will have to stop. This is where I don't know what to write. The cancer is spread thin in various places throughout his body. We don't know how quickly it is growing. We don't know if this treatment plan is going to work. We don't know if Max's marrow can keep up with the toxicity.

I look off to the left of my computer (Andy's old one) and see the paper weight that Lisa Sturt gave to us for Christmas: never, never, never give up. I will not. I have hope. I have strength that sometimes fails me. And I'm scared. Tears have come often today. I've asked myself repeatedly, "is this the beginning of the end?" I suppose everyday is...

Cherish your children even more than you do already. They are a gift from God for you to love and care for. They are magical, imaginative and beautiful in everything they do. Close your eyes and see it in everything they do, good and bad.



Hi - yeah, because we don't have enough to deal with already...

I come home from the zoo this afternoon and discover that the kid I saw on a skateboard around the corner from my house, carrying a computer bag just like mine - was carrying MINE! On Hannah's skateboard... with two laptops, some jewelry, the kids' allowance money, digital camera, etc...

What the hell!?! Ugh.



Thank you Deb, for such incredible pictures.

Treatment plan

CAUTION - diatribe ahead. Proceed at your own risk!

First, read this: http://mct.aacrjournals.org/cgi/content/full/5/8/1905 (thank you, Vikki)

Then, read this: http://cancer.ucsd.edu/aboutus/News/stories/fatigue.asp

You should now understand the reason we started MagicWater.

Now, read this: Max's treatment plan (Microsoft Excel file), developed by Max's team: myself, Melissa, Drs. Roberts and Sholler, Neil, Pat and Meryl. (plan also pasted below)

Last night, I was building the plan out on my laptop on the kitchen table, after two and a half days of emails, phone calls, & conference calls.

After reading the first two links above, you'll see why Max has to enter uncharted waters yet again in hopes of finding a treatment that will control his cancer (control being all that we're hoping for now).

We have good hope for this treatment, but we know the odds are against us. Our goal is to give Max's body all the help it needs to stay healthy, but also be aggressive in beating back this latest progression. If we can get back to stable, we'll adjust the treatment accordingly, then work extra hard to help try to find a long-term treatment solution.

For now, it's "all-hands" as his new treatment requires daily chemo, precise timing of adminstration of supplements, and diligent monitoring of progress (or lack thereof) of the treatment via blood and urine samples, MIBG, CT and MRI scans.

Dr. Sholler is also growing Max's cells in her lab and will be able in 2-3 weeks to test different agents against his specific neuroblastoma cells. This is part of the personalized medicine project being funded by MagicWater. This could help save Max's life by determining what treatments have the best chance of working before trying them on Max, and is widely regarded as the future of cancer treatment.

Max's new treatment protocol for next 2 rounds (6 weeks)
1. Irinotecan (10mg/m2 5 days IV x 2 weeks) topoisomerase inhibitor (chemo)
2. Temodar (100mg/m2 PO 5 days) alkylating agent (chemo)
3. Nifurtimox (20mg/kg PO divided TID - 4 pills per day 1 AM, 1 noon, 2 PM) oxidative stress
4. Zometa (4.0 mg/m2 IV over 1 hour) increase bone density
5. Rapamycin (3mg/m2 PO on Day 1, then 1mg/m2 PO on Day 2-7, on week 3) mTOR inhibitor
6. Genestein (250mg AM/PM) AKT inhibitor
7. Celebrex (100mg AM/PM) COX-2 inbitor
8. Glutamine (2g in AM) for Celebrex
9. Skullcap (400mg AM/200mg PM) lowers IL-8
10.AHCC (1500mg AM/PM) elevates NK function
11. Tauroxicum (2 drams/AM) lowers IL-6 and c-reactive protein
12. IP6/Inositol (1530mg 3x/day) lowers plasma VEGF
13. Zinc citrate (30mg PM) lowers ceruloplasmin
14. Calcium (500mg AM/PM) For Zometa
15. Vitamin D3 (1200IU PM) For Calcium
16. Radiation (S2, S3 vertebral bodies)


Sucks less

Below, the report from Dr. Roberts on Max's CT and MRI that was performed today. All in all, not as bad as we were expecting, quite honestly. In other words, it sucks less than it could. New treatment plan will be posted tomorrow.

VMA 18.8 & HVA 21.8 on 3/27
LDH 1180 on 4/1 (highest since before stem cell rescue in Spring 2005).

"CT Chest: a small right pleural based mass in the lung, and a hilar mass (that is most likely the collection of lymph nodes that made the mediastinal area positive on the MIBG scan). They also described another lung lesion that was very small and they called it "questionable" as to whether or not it really is anything."

"CT Abdomen: normal"

"CT Pelvis: no soft tissue disease. The signal on the MIBG scan appears to be coming from the S2 & S3 vertebral bodies. The mass at S3 is larger than what is seen in S2. The prior thoracic spine lesion is essentially unchanged. There does not appear to be other bony disease in the pelvic bones."

"MRI Brain/Head: no brain lesions. There is a very small right frontal bone lesion in the skull. It was visible on the MRI scan, as the fat saturation was adequate to make the skull bones interpretable. The CT of the skull was not done."