Nathan Gentry

Nathan became an angel on Sunday. Rest in peace Nathan, and may the Gentry family find peace in spite of their horrible loss.


CT biopsy today

Max will be having a CT-guided needle biospy of his T11 vertebrae today. Hopefully, we'll get a good sample and can find out the state of maturity of those pesky cells that continue to light up on MIBG but which don't grow (or shrink) in size. Will update the blog later and let everyone know what happened.


Nathan Gentry

From Will Lacey's blog today...

The boy and family who have given me so much strength and inspiration to do a better job, to try harder, to dig deeper, and who helped to make me a better dad because of their heroic efforts are coming to the end of Nathan's battle.

Nathan became transfusion dependent because his marrow has stopped producing platelets. Since he is in so much pain they decided to stop giving platelets since extending his life with platelets would only lead to more intense pain and suffering. Since you need platelets to clot your blood this leaves open the very real possibility for a catastrophic bleed.

I ask that if you are someone who prays to please ask your God to spare Nathan and his family that horror, to spare him any more pain, and to give his family the strength and peace that they need right now.

This disease sucks.


A fine young man

Once again I get to be lazy and let better wordsmiths do my work for me. John Silva is an 11 year old whom I have never met and who has never met (to my knowledge) anyone with neuroblastoma. Nevertheless, John (did I say he just turned 11?), decided that instead of presents, he'd rather have his friends donate money to the MagicWater Project fund. Read about it here on Will Lacey's blog. Thank you John! Thank you John's friends and their parents!


Latest #'s

It's scan week(s) for Max. He had MIBG scan last Wed (Melis reports stable on T11 but we are still waiting for the official word), MRI today. We skipped BMA (bone marrow aspiration) as he just had one, they've been negative since January and the last time he had one in June we landed in the hospital with an infection. No thanks, we'll take a pass on that this month! His LDH #'s are down (good): 632 today versus 722 on 7/2 but yo-yo on him so much that I'm beginning to discount the 100pt swings as just inherent variability. Still, as an emotional human its good to see them down.

We're about 75% through collecting other blood markers for the naturopath we're using to help us more acutely monitor various factors that are related to NB tumor growth and metastasis. I won't go into detail here because the tests are incomplete at this point, but I will say that Max's results are in the high-normal range, even with all the stuff we've been giving him that should theoretically address these factors (angiogenesis, inflammation). Still, there are some promising tools (tetrathiomobylate) that we haven't used yet, waiting for these tests to be done so we can baseline then measure progress. His Vit D levels are about mid-range on the 25(OH)D test which measure vit D. We're going to give him 400-800 IU extra daily to boost that a bit from the mid-range of 43 to hopefully the upper range of 70-80.

Max's counts were good today. We hope that the combination of oral chemo + continued supplemenation (added bromelain which may help stimulate platelet formation) + our new vegetable cocktail (kale, beets, red cabbage and garlic) that Max gets ~500ml of daily is helping to boost his immune system, blood cell production and overall health and energy. We're slowly transitioning away from the Nestle Peptamen, replacing it with the vege combo and more "natural" forms of nutrition, ie from real food you can buy and liquify in the cuisinart in order to push through Max's gtube.


Cancer Camp!

Max and Hannah have spent this week at Camp Reach for the Sky, an annual event hosted by the Amer Cancer Society. This year the kids went to day camp together and have had a blast. As I wasn't there to take photos - there are none to post! Nonetheless, the kids loved it, swam everyday, did arts & craps (I mean crafts!), and just had a lot of fun.

I learned a lot about the camps myself:
  • the little kids day camp (that Hannah & Max were in this year) for 4-8 yr olds are manned by nurses and a doctor and the teenage-couselors are cancer survivors, warriors and siblings or cancer kids. They've all been to the camps and love what they do.
  • there is an 8-18 yr old over night camp for siblings (which Hannah will attend next year and until she's 18). The kids are grouped by age and get to know other cancer-siblings and find out that they are not alone in having the feelings they do about their parents or cancer brother, not getting attention at home, their school friends not understanding - all the teenagers said it has helped them so much and they look forward to it every year. These are the same kids who volunteer to help at the little kids camp.
  • and the 8-18 yr old resident overnight camp is for the cancer kids. A place they can go where all the kids understand all their ailments, physical abilities or lack thereof. A place where they can be comfortable trying new things without fear of failing and enjoy a huge boost of self-confidence with each new accomlishment.


Paul Saxon - Angel

Paul passed away last night at 3am Tx time. He was on the nifurtimox study at University of Vermont just as Max was. Please visit his site, read his story, and do what comes naturally.


La Mesa Fire Dept

More of an update here. Just wanted to profusely thank Justin and Captain Steve from La Mesa Fire Department station 12 for the awesome firehouse experience last Sunday. You can see pics on Max's "kid-friendly" blog. Guys, you made Max's (and Hannah's) day and I'm sure one day Max will really want to be a fireman instead of a trash truck driver!

And a huge thanks to Jon (who set up the visit for Max) and AJ (whom Jon knows and works for LMFD, but was called out of town to fight fires in Northern California).

Friday the 13th is a lucky day!

Why, because it's Hannah's (Max's awesome big sister who takes care of Max and keeps him safe at night) and Sam's birthday today. Two amazing kids, each in their own way affected by cancer, and who's parents are linked by a common goal: beating cancer for their kids and others.

Hannah turns 8 today.
Sam turns 7 today.

We wish the two of you all the happiness and love the world has to offer.

Cancer is fun!

Will update this more later but wanted to quickly share with you a pic from yesterday. Max got out of the hospital around 11am, whereupon mommy dropped Hannah and Nic off at Nana and Tata's house, and continued on to the amphibious base on Coronado (where the Navy Seals train) for a boat ride around San Diego bay in a Navy Seal attack boat. That's cousin Jake next to Max who just left the Navy having been a driver on one of these.


We're home!



Extreme NB

Life battling NB is frequently a life of extremes. Highs can be extremely high. Lows can be extremely low, obvious on that one. This week is shaping up to be one of those extreme weeks.

High - on Sunday, Max got the firehouse experience of his life. Full tour? 'course. Wear a fire coat and o2 tank? c'mon. Go for a ride in a brand new $750,000 fire engine? whoa.... DRIVE a brand new $750,000 fire engine. WOW! Pull through the garage, switch over to the pump, pull out a 2 1/4" hose and spray water through a real nozzle? NO WAY! See pics here: http://maxmikulak.blogspot.com/

Low - on Monday, check into hospital with fever.

(pending) High - Thursday, take a ride around San Diego bay with a Seal team and cousin Jake (who just got out of the Navy driving the Seal boats). Somehow, the gods have shined down on Melissa and she gets to go on this adventure since the 'boys' want to go out at noon on Thursday. I bet Melissa could auction a boat ride with a Seal team to one of the CV moms for thousands! ;)

Low - gotta figure out a new plan for Max. Obviously addition of VP16/Etoposide has played havoc with his bone marrow (two transfusions in two weeks).

I also just wanted to share some infectious pics of Max working on a new Lego project. And a couple from the Fourth, especially one of Hannah, who's been having a rough time with all the attention, gifts and prizes lavished on Max. I seriously think she would give her left foot to be in the hospital with mommy tonight...

Max with his Imperial transporter Lego set that he bought with the wad of $1's from papa. Look closely and you'll see Lego Luke Skywalker's head on the bikini-clad body of Lego Princess Leia...

Hannah being patriotic and symbolic at the annual kids parade in Del Mar on the morning of the Fourth.

Hannah (Max in background in top hat and red jacket... where's Nic? Oh sh*t!)

When I look at Max's smile I see such innocence.

Max:Fever = Check-in:Hospital

Just home for a second to pack up some overnight essentials. Max went into clinic this morning for his CBCs. Had a runny nose and slight sore throat. Well, with low white blood cell counts and low ANC it all adds up to a fever that slowly but surely escalated and hit 101.2 right before he was ready to go home. So he and I have a reservation at the Chateau du Rady for the next few nights (hopefully not too much longer than that!). Good to point out that sometimes you get to stay for 7-10 days due to fever and low counts. Woo-hoo!

Max is remarkable on the spring-back, so I hope for the best!


You Can Help Raise Awareness

Go to http://www.curesearch.org/support_curesearch/raise_awareness/ and click on the links to write a letter to your congressman regarding his/her support of the Conquer Childhood Cancer Act of 2007. Budget cuts are leaving researchers high and dry which in turn leaves our kids in a worse position.

Write a letter, send an email, make a phone call.


FU, NB 2

James Runde



Paul Saxon is having a hard time. He was on the Nifurtimox study.

Elesha Debenport became an angel June 22.

Please take a moment and visit their sites. Do what comes naturally next but please remember that there are kids that are not doing as well (wow, that's a relative statement) as Max.