Four months ago Max started talking about wanting a pet. A furry pet. He would talk with me after school as we walked to the car and throw around different scenarios for having a pet. Sometimes it might be a dog. But my kids are not dog lovers. He would talk about hamsters, rats, guinea pigs, even a bird now and again. But every conversation ended with a cat. "I think a cat would be good, mom."

So after two months of listening to him Andy and I finally committed to getting a cat. Max went to Ceramic Cafe and painted a water and food dish for the pending puss, and we would discuss the different things that cats do and need from a family. It was so very calm and unrushed. There was never any begging. (Maybe because my kids had absolutely no idea where one gets a pet..?)

Finally one day came the last week of school where I had no kids with me and I made a trip to the Rancho Coastal Humane Society. There in the Cattery I met Naboo, a two year old silver tabby. The name alone caught my eye (Naboo is a planet from Star Wars - the movies Max and Hannah love so much). He was a real winner. Andy & I took the kids down two days later to meet him and they all fell in love with him. He played, purred, rubbed on them, let them pet him and follow him around.

We had found a furry pet with a name much to Max's liking. Naboo is a nice distraction to have around the house. Thanks, Max.



We had an amazing weekend and I just wanted to give a quick update on events.

Saturday, we started off with a visit to NAS North Island to see a buddy of mine off who had flown in for a night. Anyone who can guess the airplane Max is standing in front of wearing *his* flight helmet gets a certified pat on the back from me.

Afterwards, I picked up Hannah from sibling cancer camp. She was gone all week, I forgot to mention in previous posts. Hannah had a fantastic time on her first week-long sleepover camp experience and I know we'll be doing this again next year.

Today, Max had his 7th birthday party. He had a blast. Thank you to all the kids that showed up... we had over 20!



Pleasure is the beginning and the end of living happily.
— Epicurus, (c. 341-c. 270 BC), Athenian philosopher, taught about atoms, serenity, freedom from pain.

Melissa and I are so disappointed. Max's catecholamine's continue to climb. Monday's numbers were VMA 146, HVA 99. The really adventurous can click on this link: Latest lab results.

We're trying to focus on the positive but realize that we're losing the battle against his neuroblastoma and need to take a chance and try something totally different (read: untested) in hopes it works.

Max's birthday party is this weekend. Melissa has pulled out all the stops and has organized an Indiana Jones adventure for the kids. It starts with getting a scrap of a special map and leads the kids through six challenges, culminating in finding the treasure (a pinata shaped like a treasure chest). A couple of Boy Scouts have volunteered to be the guides for the kids on their adventure through our backyard, so that we can take pictures and record video. Unfortunately, Deb can't make it on Sunday, but we'll do our best to capture the action ourselves. Honestly, we're spoiled now having the benefit of good photography versus our photography. It also isn't lost on us the significance of what this birthday represents and how for all practical purposes it will be Max's last. While hope remains, reality also has a place at our table, and I find myself increasingly looking at the calendar and our scheduled vacation in early August and wondering if I should move it up.

This week, we scrambled to set-up some amazing experiences for Max. On July 12, we will be holding a Jedi Training Academy event in our backyard with the San Diego Star Wars Society. Basically, our goal is to invite Max's Cub Scout den over for a summer den meeting. While den leader Steve teaches them about knots, a knock on the door will be heard, and (one/two) Jedi Knights will come in and announce that Lord Vader has been seen in the neighborhood, and the Jedi need Den 6's help to fight the dark lord and his gang of stormtroopers. After some rudimentary training, Darth and his friends (maybe Boba Fett too) will find the Jedi and their padawan, and a fight will ensue. This is similar to the production that takes place at Disneyland several times per day, and it is sure to be one of the most amazing experiences for Max and his buddy. Shhhhhhh.... Max and the other kids don't know, so don't spoil the secret.

Later in July, I've lined up for Max to visit with Stephen Silver at Comic Con which is held every year in San Diego. Stephen designed the characters for Disney Channel's Kim Possible, Danny Phantom, and other shows, and is an amazing artist and good guy all-around. Hopefully I can convince Stephen to draw Max a King Komodo which is a komodo dragon character from one of Stephen's concepts and Max's fav.


A Picture Worth a 1000 Words

This is pretty cool: since Mashed Potatoes was introduced one month ago - May 22 - it has received 2300 unique visitors. Yesterday it was viewed 300 times.

Thank you for taking the time to see what life is like for a child with recurred neuroblastoma. These pictures may be of Max, but they are reflections of a thousand other kids fighting the same battle.


6/10 MIBG/CT Official Report

Neuroblastoma sucks.

6/10 MIBG

Findings: Multiple enlarging, and new foci of radiopharmaceutical uptake are present. Within the calvarium at the junction of the frontal and parietal bone, anterior mediastinum just right of the midline, there are enlarging foci. Within the bilateral iliac bones, and diffusely throughout the spine, there are multiple new foci of radiotracer uptake. Uptake within the sacrum and bilateral femur are unchanged. All of these foci demonstrate anatomic correlation. There is physiologic radiotracer uptake within the salivary glands, liver, spleen and kidneys.

Impression: Since the prior I-123 MIBF scan on April 30, 2008, there has been interval worsening of tumor burden characterized by multiple new and enlarging foci of radiopharmaceutical uptake.

6/10 CT

Findings: During the study interval, there has been decrease in size of low-density mass in the right hilar region now measuring approximately 1.6mm in the craniocaudad dimension though extensions of the soft tissue are seen extending slightly cephalad to this within the hilar structures. This mass measures approximately 1.6cm in transverse dimension and 1.5 cm in AP dimension. Low-density mass at the level of the left anterior hemidiaphragm is again identified but has not significantly changed in size or appearance from comparison study. Nodular densities throughout the lungs, predominantly in the right upper lobe, are somewhat atypical for metastatic disease and may relate to atypical infectious process. Mild dependent atelectasis is noted and there is no evidence of pleural effusion. Remaining cardiomediastinum is unremarkable.

Soft tissues are remarkable for stable left chest wall Port-A-Catheter. The bones are stable in appearance with note again of increased sclerosis about T11 as well as mild height loss and sclerosis of T6 vertebral body. The remaining exam is unchanged.

Impression: Decreasing size of low-density mass in the right hilum without significant change in size of the left anterior hemidiaphram mass.

Nodular densities throughout the lungs and predominantly in the right upper lobe may represent infectious process though metastatic disease is not entirely excluded.

Stable sclerotic vertebral body lesions.


Local Kids Host Tennis Tourney - Raise $1,380

Luke Williams, Max Mikulak, Jake Williams & Andy Volkert

Fairbanks Ranch Country Club - Local Tennis Stars, Jake & Luke William, hosted a kids-only tennis tournament this Sunday to raise money for the Magic Water Project.

Luke and his big brother Jake came up with the idea as a way to help their friend Max with his battle against neuroblastoma. "They are such nice boys and just wanted to do something extra special to help Max," said an inside source.
As both boys are tennis buffs the obvious choice was to host a tournament. They spoke with their tennis pro at the Fairbanks Ranch Country Club, Andy Volkert, and were given the wave of approval to host the event at the club! Mr. Volkert played a huge part in helping the two boys set up the event. Plans were soon underway and a tournament was organized in less than three weeks. The boys took full responsibility for planning and recruiting, and enlisted their parents as well as tennis pro, Jeff Williams, as specialty consultants on some minor details.

The 1st Annual Fairbanks Ranch Country Club-Magic Water Project Tennis Tourney boasted 24 participants in three different levels of skill. Each participant played their best and took home a load of goodies and our winners took home beautiful trophies as well.

Jake and Luke raised over $1,380 on behalf of Max and the Magic Water Project.

Thank you Jake and Luke. Thank you to all the great participants. Thank you Fairbanks Ranch Country Club & Andy Volkert. Thank you parents for making a donation to a wonderful and worthy cause. Thank you Williams Family for going so far above and beyond in your support and wish to help our little boy.



The scan results from Max's CTscan and MIBG are as follows (there may be modifications of this when the formal reports are dictated):
  • The skull lesion is larger by MIBG and by CT scan, primarily pushing down on the brain rather than up out of the skull. (Apparently, the radiation Max received didn't do much but make a bald spot.)
  • There is diffuse increased uptake by MIBG scan in the entire spine, in the upper arms and shoulders, in the sacrum and pelvis, and in the lower bones of the legs (tibia & fibula). The femurs (thigh bones) appear the same as they did on the prior exam.
  • The hilar mass (this was the soft tumor in Max's chest) appears smaller by about half. This appears to be the only disease that decreased.

Obviously, the two cycles of velcade and gemzar did not produce the results we had hoped for. Max has a lot of new disease.

Drs. Roberts & Sholler took this afternoon to redirect our course of action, which will start tomorrow, Thursday. Max will start taking Etoposide, Rapamycin and Vinblastine.

His platelets continue to be low. He received yet another transfusion today. I expect he'll need a red blood transfusion Friday based on the direction those counts are taking.

We are saddened, angry, worried, pissed, perplexed... there's something out there. We need to find it.



To the right, you'll see some new links. I'm now using Google Docs to manage the spreadsheet that holds all Max's lab results. Any time I update the spreadsheet it will update via that link if I'm connected to the I'net. Cool. So all you data freaks have 24/7 access to the latest numbers I have.

Max scans starting tomorrow. His VMA/HVA did a weird flip. VMA shot through the roof to 77! HVA dropped to 39? We are doing another tomorrow to see if this is an anomoly or something terrible is happening.

These are the considerations for what Max will start next week. Based on Max's morphoproteomics report (see link in right column), its likely gemcitibine was doing nothing for him. We won't go back on velcade until his pain from the previous doses diminish or go away. The combo of etoposide/SAHA might work nicely, alternating with vinblastine/rapamycin.

See? Fun!

Cycle 1 – anti-tumor

Journal of Pharmacology And Experimental Therapeutics Fast Forward First published on September 13, 2006; DOI: 10.1124/jpet.106.109397
Proteasome Inhibitors Potentiate Etoposide-Induced Cell Death in Human Astrocytoma Cells Bearing a Mutated p53 Isoform
Stefania Ceruti, Alessia Mazzola, and Maria P. Abbracchio
Laboratory of Molecular and Cellular Pharmacology of Purinergic Transmission, Department of Pharmacological Sciences, School of Pharmacy, University of Milan, Milan, Italy
Resistance to anticancer agents is often due to defects of intracellular pathways of cell death. Thus, the identification of the apoptotic pathways that can still be recruited by chemotherapeutic agents in cancerous cells can disclose new opportunities to treat malignancies. Here we show that human astrocytoma ADF cells (which are resistant to "mitochondriotropic" agents as well as to the antineoplastic drug etoposide and to proteasome inhibitors when used alone) undergo dramatic apoptotic death when exposed to a combination protocol based on the use of etoposide in the presence of proteasome inhibitors. Sensitization to cell death involved an autoamplifying loop of caspase activation, where the "executioner" phase of apoptosis was sustained by cooperation of caspase-2, -9, -8, and -3. We also show that sensitization of cells to the combination protocol involved the nuclear relocalization of p53, despite the presence of a polymorphism in its DNA-binding domain, suggesting the likely induction of p53-dependent proapoptotic genes. Conversely, p53 phosphorylation on Ser-15 did not play any role in apoptosis. In conclusion, use of etoposide in combination with proteasome inhibitors may represent an effective strategy to restore sensitivity to apoptosis in human astrocytoma cells bearing multiple defects of intracellular apoptotic pathways.

Blood, 15 November 2003, Vol. 102, No. 10, pp. 3765-3774.Prepublished online as a Blood First Edition Paper on August 7, 2003; DOI 10.1182/blood-2003-03-0737.
The proteasome inhibitor bortezomib interacts synergistically with histone deacetylase inhibitors to induce apoptosis in Bcr/Abl+ cells sensitive and resistant to STI571
Chunrong Yu, Mohamed Rahmani, Daniel Conrad, Mark Subler, Paul Dent, and Steven Grant
From the Departments of Medicine, Radiation Oncology, Biochemistry, Microbiology, Human Genetics, and Pharmacology, Virginia Commonwealth University, Medical College of Virginia, Richmond, VA.

Interactions between the proteasome inhibitor bortezomib and histone deacetylase inhibitors (HDIs) have been examined in Bcr/Abl+ human leukemia cells (K562 and LAMA 84). Coexposure of cells (24-48 hours) to minimally toxic concentrations of bortezomib + either suberoylanilide hydroxamic acid (SAHA) or sodium butyrate (SB) resulted in a striking increase in mitochondrial injury, caspase activation, and apoptosis, reflected by caspases-3 and -8 cleavage and poly(adenosine diphosphate-ribose) polymerase (PARP) degradation. These events were accompanied by down-regulation of the Raf-1/mitogen-induced extracellular kinase (MEK)/extracellular signal-related kinase (ERK) pathway as well as diminished expression of Bcr/Abl and cyclin D1, cleavage of p21CIP1 and phosphorylation of the retinoblastoma protein (pRb), and induction of the stress-related kinases Jun kinase (JNK) and p38 mitogen-activated protein kinase (MAPK). Transient transfection of cells with a constitutively active MEK construct significantly protected them from bortezomib/SAHA-mediated lethality. Coadministration of bortezomib and SAHA resulted in increased reactive oxygen species (ROS) generation and diminished nuclear factor B (NF- B) activation; moreover, the free radical scavenger L-N-acetylcyteine (LNAC) blocked bortezomib/SAHA-related ROS generation, induction of JNK and p21CIP1, and apoptosis. Lastly, this regimen potently induced apoptosis in STI571 (imatinib mesylate)-resistant K562 cells and CD34+ mononuclear cells obtained from a patient with STI571-resistant disease, as well as in Bcr/Abl- leukemia cells (eg, HL-60, U937, Jurkat). Together, these findings raise the possibility that combined proteasome/histone deacetylase inhibition may represent a novel strategy in leukemia, including apoptosis-resistant Bcr/Abl+ hematologic malignancies. (Blood. 2003;102:3765-3774)

Cycle 2 – anti-stem-cell/anti-angiogenic

Combined Therapeutic Effects of Vinblastine and Rapamycin on Human Neuroblastoma Growth, Apoptosis, and Angiogenesis
Danilo Marimpietri1, Chiara Brignole1, Beatrice Nico4, Fabio Pastorino1, Annalisa Pezzolo1, Federica Piccardi3, Michele Cilli3, Daniela Di Paolo1, Gabriella Pagnan1, Luca Longo2, Patrizia Perri2, Domenico Ribatti4 and Mirco Ponzoni
Purpose: Vinblastine and rapamycin displayed synergistic inhibition of human neuroblastoma-related angiogenesis. Here, we studied the antitumor activity of vinblastine and rapamycin against human neuroblastoma.
Experimental Design: Cell proliferation, cell cycle progression, and apoptosis were evaluated by measuring 3H-thymidine incorporation, bromodeoxyuridine uptake, and phosphatidylserine exposure, respectively. The in vivo sensitivity of neuroblastoma cells to vinblastine and rapamycin was determined in orthotopic neuroblastoma-engrafted mice. Angiogenesis was assessed by the chick embryo chorioallantoic membrane assay.
Results: Each compound alone was able to induce a dose-dependent significant inhibition of cell proliferation, with a dramatically enhanced antiproliferative effect for the drugs used in combination. A marked G2-M cell cycle arrest with a nearly complete depletion of S phase was associated. The combined treatment triggered an increased apoptosis compared with either drug tested alone. A significant inhibition of tumor growth and microvessel area was obtained in neuroblastoma-bearing mice when treated with vinblastine or rapamycin alone, and a more dramatic effect with the combined treatment, compared with control mice. The therapeutic effectiveness, expressed as increased life span, was statistically improved by the combined therapy, compared with mice treated with either drug tested separately. Histologic evaluation of primary tumors showed that the combined treatment inhibited proliferation and angiogenesis and induced apoptosis. Combined treatment of neuroblastoma cells and neuroblastoma-bearing mice with vinblastine and rapamycin induced the down-modulation of both vascular endothelial growth factor production and vascular endothelial growth factor receptor 2 expression. In the chorioallantoic membrane assay, angiogenesis induced by human neuroblastoma biopsy specimens was significantly inhibited by vinblastine and rapamycin.
Conclusions: These results may be relevant to design new therapeutic strategies against neuroblastoma.


Weekly Update

How could another week have possibly gone by already? There is so much going on with Max right now I think we're going to make a concerted effort to post a weekly update. We'll see how that goes...

Max was able to go school Wednesday and Thursday last week with a little wheelchair assistance. His legs are still hurting now and then from Velcade and it's nice for him to know that he has it there in case he needs it. Friday we spent the whole damn day in clinic just trying to get a 90 minute chemo infusion. Everything was going wrong there (not for us), but the wrongs affected our wait beyond belief. I'm over it now, but it was not a good day for Max and I at clinic. Grrr.

Max had a great weekend! Spent Saturday afternoon at the cousins house in Alpine with a 24' tall inflatable waterslide, giant African tortoise, playing video games in the garage on the 40" plasma screen w/ surround sound while sitting on a sup'd up golf cart... need I say more? The kids just hate having to go there.

Sunday we went down to the park by the beach, had bagels and cocoa, played with a lot of friends who showed up and waited patiently for a steam engine to come roaring past 10:30ish. It was late... 11:30? no... 12:30... no. The patience factor expired here and we left. Five minutes later the steamer blew by. Oh well. The kids had more than enough fun with Ryan & Kasey, and Noah & Zoe. We took the afternoon off and relaxed at home!

Monday morning found Max heading off to his last radiation appointment for his skull and lower spine. I secretly call him Patch now because the radiation to his skull has left a big, shiny bald patch. Then he was off to clinic for his last Velcade this cycle and a bunch of specialty blood draws. He was able to head to school for about two hours before I had to pick him up and return to clinic for a double transfusion: blood 6.0 and platelets 9. Shortly before finishing the red blood at 6:30pm he started getting a fever. (Bad: fever=inpatient.) The nurses had to keep him longer to watch for any other possible transfusion reactions. His fever kept going up, but his ANC was good, so they gave him an antibiotic and tylenol and sent us home at 8:00pm with a 103.4 fever. (Yay for going home! even though I was sure we were going to have to pack a bag and return for an overnighter.) We didn't. Instead the Velcade side effects kicked in full force giving Max unbearable leg-pain-spasms that started around 10pm for 5-10 minutes each, every 1.5 hours. All we could do is comfort him while waiting for each spasm to pass. It was a long night.

Tuesday, Max missed school due to the leg pain. He couldn't even walk to the bathroom. It was just as bad as the previous night. Andy spoke with Dr. Sholler in the morning and she had us give him a one time dose of a certain steroid that seems to help with the pain. We also switched him from one nerve med to another. By the late afternoon he was much more comfortable and actually walking around by himself. What a nice surprise for Daddy to come home to after all the text messages I sent him throughout the day. (Dr. Sholler is helping us a lot with this particular chemo cycle because she's running a study on it in Vermont.)

Wednesday and Thursday Max was back at school in his wheelchair. The PE teacher had some great games set-up on the playground that Max could play while in the chair. He had a great time out there - thank you, Coach Davis! He was also very happy to be with all his friends! Thursday afternoon he was back at clinic getting a routine CBC. His platelets were only up to 30. Hmmm...

Friday Max was back in school in his chair. There was an all school assembly. Max was chosen from his class to receive an award for Citizenship. He's such a good kid! Friday was also Field Day at school! Woo-hoo! It's kind of like the Olympics for the whole school. There are about 20 different games on the field and the classes rotate through each one. Max actually got out of his wheelchair and participated in half of the games before he pooped out. He ran, jumped, hopped, balanced and more! It was a great day (I hope we don't have to pay to dearly tonight for all the movement he put himself through!). I took Max to clinic after school just to check on his CBC's and sure enough his platelets had dipped to 16 already. He stayed at clinic for a nap and big ol' bag of platelets.

He is still experiencing a lot of pain in his legs presumably from the Velcade. Another child in Dr. Sholler's care is experiencing the same spasms after the fourth dose (same as Max). Next cycle if we're still using velcade/gemzar we'll probably skip the fourth dose.

Week of June 9 will find Max getting a CT scan, EKG, MIBG injection and scan, MRI and a bone marrow aspiration. We will post results as soon as we have them. We're really hoping for some good results this time.

Max finishes 1st grade officially on Friday with his class!


Magic Water Billboard in Boston

Isn't this awesome!?!?!

Three billboards in the greater Boston area were donated by Clear Channel to MagicWater. Someone even stepped up and paid for the art to be produced in billboard size. More info on this is at Will Lacey's site. That's Little Will Lacey there on the board.