Fun

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
Velcade/Etoposide/SAHA
http://jpet.aspetjournals.org/cgi/content/abstract/319/3/1424
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.

http://bloodjournal.hematologylibrary.org/cgi/content/full/102/10/3765
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
Vinblastine/Rapamycin
http://clincancerres.aacrjournals.org/cgi/content/abstract/13/13/3977
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.

Update

We haven't posted medical news since May 10th so I guess it's time to get ya'all up to date.

Max's MIBG scan from May 9 looked roughly the same as the previous scan. No obvious changes to anything. It is, of course, hard to detect what's what in a scan during active treatment that is hopefully killing cells because the dying cells will still light up in the scan. It did not appear that there was anything new.

Radiation on Max's femurs ended May 13. Team Max realized about halfway through the thigh radiation that the leg pain wasn't being addressed through that medium, but instead controlled by an anti-inflammatory steroid. The assumption then was that the cancer in his lower spine was causing inflammation and referring the pain down into his legs. So, on May 14 Max started radiation on his s1-s3 vertebrae and skull. (You could actually see the bump on his head where the bone was swollen due to the cancer, which means it was pushing inward as well.) His appointments are 7:00am weekdays x 13 days, he's sedated for each, and is home by 8:00am (provided he isn't expected at clinic) where he can take his morning meds and be off to school! This treatment is going well and will be completed Friday. BTW: the old pain in upper legs seems to be gone for the most part.

Max started his second cycle of velcade/gemzar Monday, May 19. Shortly thereafter he began having a lot of leg and arm pain. He even missed a day or two of school because of it. He took his second dose of Velcade that Thursday and the pain became almost unbearable. By the weekend he was taking a lot of pain meds. They mostly didn't work on the pain, instead they made Max sleepy to the point of going to bed at 5:00pm. Saturday morning, after sleeping 'til 9:00 which is unheard of in our house, Max woke up felling pretty good, smiling, ready to play a video game. A few moments later he was crying and screaming about pain in his arm. It took several minutes for the pain to diminish to a point where he could gain control of himself. The rest of the weekend was spent monitoring Max's pain.

As Andy wrote previously about speaking with Dr. Sholler (while she was in the hospital!) last week, we had to deal with a sudden increases in some blood and urine markers that basically read: "new cancer growth going on inside." She gave us some ideas of what could help and we went through the weekend with thoughts of cancer progression bouncing around inside our heads.

Monday morning, Memorial Day, I sent an email to the doctors about the situation, looking for a little feedback to get us through the upcoming week. Later in the day Dr. Sholler phoned us and Dr. Roberts and I exchanged more emails. Both of which helped get us through the rest of the day.

Max has required three platelet transfusions, one each week, and one red blood trans. I expect he'll get red blood later this week, too. This is definitely a record for Max. Low blood counts can be attributed to current chemo and radiation treatments, and weak marrow due to 19 months of continued treatment. The interesting thing here is that his white blood cell count and ANC have remained strong...

... up until Tuesday (yesterday) when he was to receive chemo again minus the velcade. Both whites and ANC had dropped and he needed a platelet transfusion. The doctor ordered IV GCSF to boost his whites in an effort to ensure he can receive chemo this Friday. Max & I spent the day at the clinic Tuesday getting platelets, gcsf, IV hydration, an xray of his left arm to rule out a fracture as cause of pain, and leaving several vials of blood and two cups of pee...

... We are still tracking his urine and blood markers to try to determine what's going on inside his little body. Are the bad guys getting their butts kicked? It's been a frustrating time trying to do this as the labs sometimes take 1-2 weeks to give results. It seems ridiculous and we're trying to figure out the system to make it work better for us. But jeez... what a pain in the ass.

Max is at school today. I just received this note from his teacher, Lisa:

I have my computer back for a minute while your son goes "poop." (notice he's your son when doing that!!!) :) Just wanted to let you know about today... he's used the wheelchair to go to art and back to our classroom and again up to Julie's for lunch. She delivered meds at recess to our room. He has opted out of recess for both morning & lunch and also opted out of music ("she makes us move a lot!") & science. However, he says he wants to finish the day out, so GO MAX!

Amazing

Will's dad wrote a very powerful and poignant blog entry about the video you can view here. Before you do that, let me just tell you a quick story about the doctor featured in it, Dr. Giselle Sholler.

This morning (Friday) I was honored to take Max to his 7am radiation appointment. Usually what I do is once Max is sedated, I run down to the cafe and grab a coffee and then return and wait for Max to be wheeled out of the radiation room. Today, I had another agenda and that was to call Dr Sholler as I had a question about this week's spike in Max's VMA (probably the marker to watch on neuroblastoma tumor activity). Max's VMA has gone up significantly again and I wanted to discuss with Dr Sholler what we might do to try to bring it down, even temporarily.

I call Dr Sholler's cell, and she picked up after about 7 rings. She sounded soft and a little bit groggy, but I figured I had just interupted her in some way. Come to find out she was in a hospital bed recovery from surgery. Rather than say, "I can't talk right now," she asked, "How's Max? How's he doing?" We had a brief conversation about what we were going to try over this weekend to bring Max's cancer, which seems to be on the prowl again, under some form of control. For those of you not familiar with the medical system today, the fact that I have the docs' cell phone, let alone that she picks it up and has a conversation with a parent whose child she actually isn't even officially treating, is just amazing. But then, we always knew she was amazing. Hopefully you see why she is now too.

Now Serving:

Mashed Potatoes for Breakfast

A photojournalistic look into the world of Max and his cancer served to you by Deb.

Spencer Dowling - 5/21/2008

**update 9:15pm by Melis** I read this last week and immediately asked Steve if I could post this on our blog. His response was this: "Hey. By all means, post it on your blog. Welcome to my train wreck! Mind the twisting wreckage, step right this way. I believe they are still serving dessert!"

Spencer passed away today. We didn't know them - personally - but I think we felt we knew him from his dad's wonderful blog posts. Please visit their site if you feel like getting a taste of what it means to really LIVE, even in the face of such overwhelming circumstances.

Spencer's dad recently posted on ACOR, the mailing list for us NB parents, his thoughts on where they were then in Spencer's fight against NB. It's a beautiful essay, and epitomizes the spirit that Spencer was blessed to be surrounded by. With apologies to the Dowlings, this has to be made public.

Date: Thu, 15 May 2008 18:03:27 -0700
From: Tracey & Steve Dolling
Subject: COPE: Forgive Me If I'm Not Miserable

I can't post everything on the website. Too many people read it. But people here understand.

Sheila and Suzanne got a bit of grief today. Sheila is Spencer's oncologist. Suzanne is his primary nurse. Together they know us a family at least as well as, well, our family. They are family. We make all our important decisions together.

Today, there was a meeting among the medical staff about Spencer. Some concern was expressed that perhaps unwarranted hope was being passed on to us by pressing ahead with chemo when there is really no reason to be hopeful. There was also some alarm that we seem to walk around the hallways smiling and generally cheerful. It was observed that I am quiet. I guess the overriding concern, whether stated or not, was whether or not Tracey and I are at all plugged into reality or if we wander about in a serious state of denial.

Forgive me if I'm not miserable.

Believe me, I am miserable. But I've had six years of training. I fake it well.

A long time ago, Spencer was statistically dead. That is to say, the likelihood of attending his wedding was infinitesimally small. The likelihood of him ever being a teenager was tiny. Problem was, we had this vibrant, very much alive, little boy to contend with. So we had choices tomake. We had to decide if every day Spencer was a little closer to death. Or if every day he was alive and we should damn well live the best we can. If it's not obvious which choice we made, then we have failed.

We might very well be on a train headed down the tracks with the bridge washed out. We do of course have the choice. Shall we run to the back ofthe train, hide underneath a seat, and moan and whimper? Or would it be better to get dressed for dinner, head to the dining car, and have a few cocktails while enjoying the scenery? If we could jump off the train, believe me we would. In the meantime, have you seen my jacket?

So if you see me hopeful about the chemo my son is getting, don't worry. I'm under no illusion that all of a sudden things will be better and remission is just around the corner. I don't believe that any more than any one else. Trust me, I do the mental processing 24 hours a day. Do I believe the chemo might relieve his pain and make him feel better, and maybe we can go home have some fun or get another pass and go go-karting or whatever? Absolutely. It is possible.
I also understand that we are not waiting for God's gentle hand to guide him to a better place. Neuroblastoma is an ugly beast that will rip apart his body with painful tumors. So let's look at the alternatives. Being treated to death is not the worst thing that can happen.

So no we haven't crushed Spencer's hopes and told him he is dying. Last time I checked he was alive. I think they call that living. Will we come to that point? Yes. Likely. We discuss it every day or so. Have we taken advantage of all of the wonderful palliative services that are available to us? No. Thanks. We're comfortable for now on 3B with the people Spencer knows giving him the care that he is familiar with. We don't need to get freaky and fill our house with hospital equipment or go and live at Canuck's place. Maybe later. Not now. And don't ask, we know it's there for us if we need it.

So suck it up. Get over it. The Dollings aren't crazy. Their heads are screwed on tighter than yours. We've got a job to do. Let's head for the dining car!

Steve

Capturing Max

I'm sure this photo is disturbing. Exactly why I posted it.

Last Saturday, Deb Schwedhelm started capturing Max's fight for his life through her wonderful photography. Her work will be showcased on a new website yet-to-be-announced. The purpose is to provide a narrative through pictures that captures the essense of what Max is experiencing.

Friday was Day 3 - where Deb joined me and Max at his 7am radiation appointment.

The new website showcasing Deb's work on Max will be live very soon.

Missed the Celebration

Unfortunately, Lisa & Daniel Sturt apparently didn't get my final email (everybody else did!)about Max running after 11:00am and showed up bright and early wondering where the heck we all were. Fortunately, Daniel ran into Ronald McDonald:

Weekend update

I thought a comprehensive "where do we stand?" update was in order. After Melissa woke up at 5am this morning (as she does every morning) to give Max the first of many rounds of things via his g-tube that help to (a) give him nutrients, (b) make his body stronger, (c) treat the symptoms of other medications he takes, and (d) keep the neuroblastoma from spreading further throughout his body, and hopefully kill off some of the tumor cells too, that I would get an early start to the day. Now that I'm on cup #2 of coffee (drank from my Tiki mug painted by Max at CeramiCafe), here's the deal: I'm going to write subjective statements and then provide the evidence, as I see it, to support my statements. Hopefully this all makes sense to the reader.

Max's cancer appears to be stable.
He had an MIBG scan yesterday. We won't have the official report for a couple of days, but Melissa's unofficial reading during the scan shows no new spots. She thinks the area in Max's femurs appeared brighter (more enhanced), which would indicate presence/activity of cancer cells, but Max has also received radiation over the past 8 days to those areas, and so the enhancement should be due to tumor kill, the cells dying, instead of growing. We'll see.

Max's biomarkers are mixed.
For those that follow this stuff, here are some of Max's latest biomarkers:

5/2 blood draw
good-Serum copper: .75 ug/mL (range .75-1.45) - was 1.27 on 4/7.
good-Ceruloplasmin: 13.8 mg/dL (range 24-42) - was 31.1 on 4/23
bad-Il6: 155 (range <3.7) - Massive elevation in IL6 likely due to radiation.
bad-LDH: 1271

5/4 urine
bad-HVA: 85.9 - climbing from 49.6 on 4/28 but also heavily influenced by dietary intake.
better-VMA: 13.9 - was 30.1 on 4/28, so while still high, moving in the right direction.

5/5 blood draw
C-reactive protein: 8.7 (range 0.0 - 0.99 mg/dL). Influenced by IL6 so no surprise that this is elevated too.
good-LDH: 697

5/6 urine
still bad-HVA: 80.9
still better-VMA: 15.6

5/7 blood draw
good-LDH: 644

Tuesday, Max has his last dose of palliative radiation to his femurs, and we begin therapeutic radiation treatment to his S,1,2,3 vertabrae and skull, where we see continued activity - the skull being the most disturbing as the metastes appears to be growing inward as well, and we're hoping to stop it before it pushes into Max's brain and causes all sorts of problems.

Today, Max receives his second dose this week of velcade. According to the protocol developed for Max, he'll take the next week "off" of chemo. It remains to be seen if we'll give him rapamycin during this off week, which really isn't an off week at all, just one where he's not getting the cytotoxic combination of gemcitibine and velcade.

We have a busy morning. There's a hike this morning with Max's cub scout pack 734. We're meeting at Torrey Pines State Beach and walking south to Flat Rock, as part of national day of hiking for scouts. Afterwards, we head down to the embarcadero area of downtown San Diego to participate in the Celebration of Champions put on by RCHSD. Max loves this event and he's happy to be so active and busy, and not in the hospital. Most of our family and Lisa Sturt will be there to cheer Max on. Hannah is taking a leave of us this morning, traveling up to La Canada/Flintridge area to visit with my dad her cousins, who leave soon for Nashville to start a new chapter in their lives there.

We remain cautiously optimistic that the current treatment is providing some positive effect. Time and dilligence in executing his treatment plan will tell. For now, we're hoping to have a fun, family-focused weekend.

We have some exciting news that we can't share yet, but it involves Deb and her photography. Here's one more from the recent shoot. Priceless...

Crazy schedule this week

Max has had such a busy schedule this week. Here's a look at what his calendar was/is like:

Monday - Inpatient
Tuesday - Check out of hospital 5:00pm, drive directly to UCSD Cancer Center for radiation.
Weds - Clinic 9:00am for chemo. Appt lasted 6 six hours. Drive home, grab a snack, pick up Hannah from school and head back to radiation.
Thurs - 7:45a radiation set-up scan, sedated. Stay for thigh radiation (so we don't have to come back at 4:00). Leave radiation for Children's Hosp for an MIBG injection at 11:15. Come home (except for having to pick-up Nicky & Hannah)!!
Friday - 9:00a - MIBG bone scan and 4:30 radiation appt.

He has had a lot of nausea from this chemo, and is having some dizziness caused possibly by several of his medications. He's also wearing a pull-up 24/7 by his own choice because of diahrrea. He hasn't wanted to even stop by school. Hopefully I can get him there for even a little bit this afternoon when we pick-up Hannah and maybe tomorrow for a short spell.

His spirits are much better today and yesterday. The radiation techs didn't know who I had with me the past two days - he was cheery and cute Max, not that other child possessed by decadron that I was carting around with me. It's so nice to have most of his back!

"...just like Max!"

Here's a little story just told to me by Andy's Dad, John, who lives very close and helps out a lot with Hannah & Nicky. Nicky is no longer a baby and has started asserting himself and his will on the rest of us. Hannah's sick of bowing down to him...

The kids are in John's car and Hannah's singing a song or something. Nicky starts telling her, "No. No singing Hiya! No, no, no!" Hannah finally get's sick of hearing about it and begins telling Nicky, in a not-so-friendly manner that he beginning to be just like Max. It's always No this and No that. No singing. I need quiet. "You are just like Max!" She adds in her sing-song voice, "Except you don't have cancer."

I guess that little fact of life is on all of our minds!

Max Awarded Children’s Challenge Award: Courage

Vic Kops Children’s Challenge Awards
Looking for Kids in League All Their Own

The Optimist Club of Del Mar-Solana Beach needs your help in finding six of this area’s most outstanding children. We’re looking for nominees between the 1st and 6th grades who have challenged themselves to achieve excellence in one of the following categories: Arts, Community Service, Humanities, Courage, Fellowship, Science.

Lisa (Mrs. Sturt) nominated Max. She prefaced this with a note to Andy & I:

April 24

Dear Andy & Melissa,

Yesterday I received an email [about the optimist awards]. Last night I began to draft a nomination for Max. I finished this morning and have enclosed it. I wish I had more time because I really feel I failed to express what I wanted. How can you capture Max with just words? I just couldn’t find the right words. The “about 500 word” limit didn’t help either. I am blessed to know you all. It’s strange that I can remember first hearing your name. Courtney (girlfriend of Melis) had a baby she was holding on the playground. I asked where she got “it.” ;-) “He’s the Mikulak’s… you don’t know the Mikulak’s?!!” Little did I know then how you would change my life years later!

Much love,
Lisa

We think she’s changed our lives, too. I think I’ve begun thinking of her as Max’s Guardian Angel. Here’s the nomination Lisa wrote. You decide if she didn’t find the right words…

Blue eyes that sparkle. A smile that warms your heart. A light. The best way to describe Max Mikulak is to say he is a light. He shines from the inside out, lighting up a room with his presence. All who meet him are immediately taken in. Love and compassion emanate from his heart.

A truly more positive child I’ve never met. Everything is always “Perfect!” There’s a purity and innocence about him. Perhaps what is most astonishing is not that a child like this exists but that a child can have these qualities while in the midst of a great battle. Max is in the battle of his life and the battle for his life. The foe Max has relentlessly and courageously fought for three and half years, and continues to fight, is Neuroblastoma. Neuroblastoma is a particularly virulent and aggressive pediatric cancer for which there is no known cure.

Max is currently six years old and in first grade. He was first diagnosed with Neuroblastoma at the age of three. After standard treatment of high dose chemotherapy treatments, radiation, and a stem cell transplant, Max showed no evidence of disease. Unfortunately, with Neuroblastoma, one is never in remission as the chance of it coming back is so great. And come back it did. Max relapsed soon after his fifth birthday. However, there is no standard protocol for relapsed Neuroblastoma. Statistically the outlook is grim, but you would never know that by looking at Max.

Max and his family have determined to LIVE LIFE TO THE MAX. Max approaches everything with enthusiasm and energy that you would not expect to find in a child stricken with cancer. When asked to do something, Max usually gives a salute with an ear-to-ear grin and happily replies, “Aye, aye, Captain!”

Max receives nutrition via a feeding tube, so every day he must go to the nurse’s office at school to get hooked up at the lunch time. While there, he often offers comfort to the other visitors. One example clearly illustrates Max’s heart. A girl had fallen and skinned her knees. She was quite shaken and crying. Max, with his ever-ready smile, went over to her and gave her a big hug. He then offered her some stickers to cheer her up. Of course the adults who witnessed this were brought to tears; to see a child so seriously ill shower compassion on someone else who just has a temporary “owie.” But that is Max, thinking of others and brightening their lives.

Last week after eight straight days of long chemotherapy infusions, Max was again in the nurse’s office getting hooked up with one of his best buddies by his side. Max became ill and vomited. After just a few tears, he wiped his eyes, grabbed the syringe with his anti-nausea medicine, administered it to himself, looked at his buddy and said, “Let’s go!” They were off to the playground to take in every moment. Such resiliency! It’s astounding and amazing. It makes you shake your head and realize any problems you think you have are really nothing. Here’s a kid who could wallow in his illness, but instead chooses to grab every chance in life to run, to play, to laugh, to be with friends.

Max is truly an extraordinary child. He has faced more challenges in his short six years that most of us will in a lifetime. Yet he never gives up, but faces each day with courage to LIVE LIFE TO THE MAX!

Out

Max is out of the hospital! Today! Our Max... out.... of the hospital.... he's home... in his bed.

His pain seems under control with the decadron. He's still Dr. Decadron and Mr. Max (ie, Dr. Jekyll and Mr. Hyde) while on it, but pain free and emotionally unstable is better than the alternative!

He had radiation at 5:30 at UCSD/Moores. While there, we discussed the radiation plan for the growing mass in his skull (scary) and his S1, 2, 3 vertabrae (not so scary but we think maybe the source of his leg pain versus the disease in his femurs). We set-up on Thursday for skull and vertebrae, begin radiation next Wednesday hopefully.

Max receiving his radiation to his femurs today. The actual time it takes to administer the radiation is about 15 seconds. The appointment takes about 10 minutes from start to finish.

Traction

Max's pain seems to be under control. He can walk(!), stand up to pee - was having to sit, muscles too tight from the pain :( Saturday afternoon was one of my worst experiences as a parent. Max was in pain, and totally emotionally melting down. Crying, weeping, angry. Trying to maintain some sense of control, his nurse and I had to do exactly as he said or he'd go even further into hysterical screaming attacks. Finally we increased his morphine once again while also giving him 4mg of decadron (he's had before and it works - though not without side effects of the emotional kind... he gets extremely volatile on decadron). By evening he was lucid and even chatty. Sunday at 4am he practically sprung out of bed to pee standing up which was fantastic!

Later on Sunday the decadron began to show its ugly side and he was a p*sser for the rest of the day.

Lots of Lego Star Wars on the PS2 the past 3 days.

Friday morning


Friday afternoon


Sunday


I wished I had filmed some of the moments of courage that Max displayed over the past few days. Some things that are easy, he quite honestly can be a baby about. Other times, he displays such courage and strength that I am awed and in awe of him. We will be doing a better job of chronicling his activities, for our sake in the future, and for those that are following him.

As it is, there are two things Melissa and I would like to share that hopefully allow you to get to know Max beyond the neuroblastoma stuff you read in this blog. The first is Max's progress report from the last trimester at school. The other we will share in a subsequent post.

Keep in mind that Max has missed either full or partial days a third of the time in this 2nd trimester of 72 days. I know parents like to brag about their kids' progress reports from school, but consider this not bragging but insight into how Max operates, and his strengths and weaknesses (with apologies to Lisa Sturt if I shouldn't be disclosing her student evaluations!).

Max continues to be Room 23's ray of sunshine; we all enjoy him so much! I am pleased with the progress Max has made. He has very strong comprehension skills and inferential skills for what he reads. He also remembers an amazing amount of information from the text! Writing is still not a preferred activity, but with encouragement he can write a solid paragraph with a topic sentence, detail sentences, and a concluding sentence. Of course, he continues to add his own flourishes like writing the word "big" in all capital letters to make sure the point gets across! He is always finding ways to express his creativity. When asked to self-edit, he does a good job finding his missing capitals and periods. The illustrations that accompany his writing all seem to have their own story (in Max's preferred modality--verbal!). It seems Max has an easier time writing if he can verbally express his ideas first and get approval and some cheerleading. Max's spelling continues to improve. He will use our sound letter cards to find a spelling strategy for a particular phonetic sound. Smart thinking! He also has good strategies for math. "If 10 - 2 = 8, then 11 - 2 = 9 because 11 is one more than 10." This demonstrates that he really understands numbers. However, he doesn't have his facts memorized and this slows him down. With what are often difficult concepts for a first grader, like money and time, Max mastered these easily. Recently, Max has been really striving to complete his work more quickly with successful results. He can easily become unfocused at the task at hand, but does not need much redirection to get back on track. It's difficult to know how much of his distractability is due to his medical challenges. Max is always eager and enthusiastic about learning. His positive and energetic attitude is contagious. He is a friend to everyone he meets and is so kind-hearted and thoughtful. I truly never have seen a more compassionate and sincere child than Max. He has stolen my heart!

Max a little better...

Andy's at the hospital with Max tonight while I have a break with the other two kids we have.

Max's leg pain has still not decreased. In fact, this morning I had his morphine drip increased for the the third time, and this afternoon he had such a bad episode with pain that Andy had his morphine drip doubled and had a super dose of decadron given.

A short while later, he walked back from the bathroom, played video games with Daddy, and was in a generally good mood.

Our concerns right now involve whether or not the pain Max is having in his legs is actually in his legs - or perhaps deferred pain from the cancer that is in his spine - which might then explain why there has not been any pain relief after three radiation treatments to his thighs. We decided to try to decadron on him again for a few days to see if it would allow for any pain relief (reduces inflammation and swelling that bone cancer can cause).

So, Max is obviously still in the hospital for a least a few more days.

I found this slide show of the work Dr. Sholler is doing in Vermont for neuroblastoma kids:
http://www.burlingtonfreepress.com/legacy/slideshows/040808neuroblastoma/index.html

Scan/Pain update

Scans - Max had a CT/MRI on Wednesday night. He also had a bone scan on Thursday morning. Results show that primary areas of new concern are his lungs and skull. The hilar mass has grown from 1.7 to 2.1cm. While not "huge", it becomes now a top candidate for radiation once we get Max's pain under control. The skull growth seems to be getting larger too. I swear I can see it now on his head. A slight, raised egg shape fairly symetrically aligned in the middle of his skull. It also appears to be growing inward as well as outward from his skull.

Max's pain is more under control due to better management of his morphine drip and PCA bolus. The real Max came out today, manifesting itself first this morning. This afternoon he played video games and hung out with Hannah and Nic for a bit. He still has to be "in control" during radiation, which means some screaming, lots of crying, and lots of direction to everyone, "turn off the music!" "stop talking!" and more. We let him get away with it as he deserves to be in control of something.

The next few days will determine when Max can come home. Criteria basically are ability to manage pain on home meds. I'll leave my more emotional thoughts for later. Let me just say that being with Max since yesterday afternoon has been both tremendously rewarding and extremely sad. I am so proud of him, his manner of acting and how he wants to be better. You should have seen him push himself to load his body onto the ambulance gurney. He gave perfect directions on where to place the equipment to ensure maximum possibility of success. And yet I have to carry him into the bathroom as he can't walk more than a step or two. He is truly amazing and I am honored and humbled to be his dad.

7AM this morning. the green button you see is his pain button which allows him to give himself a small boost of morphine every 10 minutes if needed.


Max and Hannah in the school room at the hospital today.


After radiation and 3rd ambulance ride.

Max's 1st Ambulance Ride

Unfortunately, Max wasn't able to show how excited he was about this event because his whole little body was hurting. He did chat with the nurses in the back most of the way there and back again. I could hear his squeeky little voice going a mile a minute back there.

Pain Relief

As you know, Max was admitted to the hospital Tuesday night for pain in his legs caused by cancer progression . The most recent treatment that he received 3 weeks ago (irino/temodar) apparently didn’t stop the neuroblastoma, so we are moving on to option 2: velcade/gemzar and adding radiation to his thighs to alleviate pain.

Wednesday afternoon Max was set-up for radiation and received his first of 10 ‘beams’ on his thighs. The fun part of this was Max got to ride in an ambulance for his first time ever from Children’s Hosp up to the UCSD Cancer Center for the radiation. Woo-hoo. He will make the same trip there again this afternoon and again on Friday – all in the ambulance.

When he returned from radiation he was whisked off for an MRI of his spine and a CTscan of his head, chest and pelvis. It’s obvious there is progression due to the pain in his legs; we just need to identify what has progressed since his last set of scans four weeks ago.

As I sat here in the hospital room with Max this morning (Thursday), watching him lie in his bed in pain, pushing the morphine button repeatedly and not feeling enough response, I was taken back to the first three days he was ever in the hospital in October 2004. He was just 3-1/2 years old and in such pain – even with the morphine – that he couldn’t move a muscle without whimpering. Crying hurt too much to do, so he would just whimper. He’s just about 7 years old now and seemingly back to square one. His pain tolerance is high. He doesn’t react to it until the pain is so great that he has to scream and cry. Late yesterday I finally got it through to him that it is not okay for him to have any pain and he should use the ‘button’ anytime he feels it coming on. Sometimes it’s still too late and he has to endure a great amount of pain while waiting 4 minutes for the morphine to kick-in, but he’s coming around to my way of thinking and has the button in his hand all the time.

Following this episode/flashback I asked for the continuous morphine drip and the bolus dose to be increased. Shortly thereafter we added adovan to the mix and saw some nice results. Max watched his favorite Aussie, zoologist Nigel Marvin, in Walk with Dinosaurs and gave an ongoing commentary during the action. He watched part of the show over in Nuc/Med during his bone scan and the rest here in his room. Daddy also came along for the scan which made Max very happy.

I’d like to explain the pain Max is living. Even on a constant drip of morphine Max can’t roll over in bed without waking up, needs the blankets lifted gently off, then slowly and painstakingly he lifts each of his legs a little, adjusts his butt, lifts legs, moves butt, tilts legs, etc… until he’s turned to face the other side of the bed. He moans and grimaces. No one can touch him to help. Having to go pee is excruciation. His pain is such that he can’t make himself go in the urine jug while laying down nor standing. He insists on making a trip to the bathroom which takes about 5 minutes to get from bedside to bathroom (10 ft?). Andy found that having Max stand on top of Andy’s feet to walk there worked well. Max can’t even begin to think about having someone carry him – owie.

He’s not complaining about being in the hospital this time. Mostly he’s slept. Friday I’m bringing Hannah & Nic down to visit him for a little while. He misses them fiercely and will be happy to see them. (Right now - with the pain - Max is not receptive to visitors.)

We’re hoping that the radiation to his thighs will start presenting its effects by tomorrow and we can start decreasing the morphine dose. Once his pain is under control at the hospital and the pain team can identify his needs they will be able to write a home-plan for pain that we can use to effectively control Max’s pain from the comfort of our home. Looking forward to that. We hope to have Max back home sometime this weekend.

Pain

**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

Nicky

Hannah

Studs

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.

Burglary

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.

Tongue

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."

Ring of Fire (the song)

Hannah has a love for lyrics and so what better storyteller than the man in black himself, Johnny Cash. At a very young age Hannah was introduced to Johnny Cash and now has a love/hate relationship with his songs (thinks they're sad/thinks they're good). A perennial favorite with her and Max is Ring of Fire. With Max's increased exposure to skate culture, I decided to try out Social Distortion's version of the song on Max, which he loves (and I love that he loves). Supposedly Nic was chiming in, "ring of fire!" with Max but that wasn't caught on the video.Below from Sunday's trip to the San Diego Aerospace museum. San Diego has a long and colorful history of aviation, but Max is most enamoured with the P-40 Tomahawk, which I completely understand and support. However, like his Pinewood Derby car, it's long on looks and somewhat short on performance. Nevermind, he likes what he likes for the right reasons.



Finally, since Nic... wait, he's mentioned so little that maybe I should explain. In case you were wondering, Nic is our third child. He not only suffers from 3CS (3rd Child Syndrome meaning he can make his own toast at 2 1/2, watches way too much TV and way too much TV that is too violent for his 2 1/2 years but then what are you to do if you have a 6 and 8 year old and they want to watch Kim Possible and Battle 360 all the time?) but he also suffers from SHC (Sibling Has Cancer meaning his needs are frequently and consciously neglected in support of the greater good cause of taking care of Max). Below is Nic being allowed to get way to close to the railroad tracks that run through Del Mar, while throwing rocks from the trackbed that are coming dangerously close to people walking down the path below. Stuff his older brother and sister never got to do, but since he suffers from 3CS and SHC, something that he gets to do.

Update

Just to keep you all in the loop, Tuesday Max is lined up for the following:

• CT Scan - to determine bony vs. soft tissue disease in comparison with the mibg scan
• Brain MRI - to see if the spot on his head is in the bone or tissue
• Urology appt - to check on the blood in his urine
• Clinic CBCs, urine, chemistry panel

Andy & I will also have a conference call with Drs. Roberts & Sholler to determine the best treatment strategy.

Thank you for all your kind words and thoughts. You're giving us strength.