Pics only - week of 8/24

Just some pics from this week to show a little more of Max's day-to-day experience fighting neuroblastoma.


Max playing one of his two favorite games, despite having a Wii and PS2: Snowy Bear.


Getting set-up CT scans on Tuesday at UCSD/Moores Cancer Center in preparation to start palliative radiation to Max's liver the following day. Max really loves the staff there and it shows that they return the sentiment. He is so comfortable and the experience very soothing and mellow (and usually quite quick!).


After CT scan, ice cream at Cold Stone! Max's favorite these days is chocolate with gummy bears mixed in. Unfortunately, today at this location they were out of gummy bears. Max didn't finish his ice cream, unsurprisingly...

Max sleeping at clinic on Friday while receiving red blood. Afterwards, he has a radiation appointment.

Friday's radiation appointment. Knowing how our middle-aged bellies become surprisingly flat when lying on our backs, you can see how distended Max's abdomen has become from the liver growth caused by cancer. As of Friday, Max has had 3 days of radiation and we hope that by Sunday he will start to get some relief and the liver will respond to the radiation and shrink as quickly as it grew.


Another shot of Max getting set up for radiation on Friday. This shot better illustrates Max's belly distension.


Waiting outside in the control room area while the radiation is administered.

Pancakes for Dinner - pics from Monday

Andy: Max came home from clinic on Monday mad for pancakes (and happy about it!). Melis and he proceeded to make a batch. As you can see from these pictures, especially the last one, Max is a very, very sick child.

Actually, he is, that's not sarcasm though these pics belie the truth. We just got the latest VMA results in:

VMA

8/21: 841
8/25: 1379

Normal range at our hospital is around 9-10. So Max's is over a 100 times higher. Most of this is probably due to the metastasis in his liver but there's really no avoiding that the cancer is spreading like wildfire and we have no real options left. Max's ANC is dropping so we can't really do even light chemo if we wanted and I have a feeling the neuroblastoma is eating the chemo we're giving him for appetizers. Radiation may help and Max had his 2nd dose today. He'll continue through next week (taking Sat/Sun/Mon off as cancer takes weekends and holidays off, in case you didn't know that...) but hopefully the three doses before the weekend have a positive effect, shrink his liver back to a manageable size, and give us a little more time.

Melis: I'm reading a book off and on and found a quote today that struck me: Time is all you have. And you may find one day that you have less than you think. I think that we've done a pretty good job of living life to the Max. But just as the hourglass seems to run faster when the sand gets low, I feel like the time we have left is suddenly slipping away.

We had the talk with Hannah & Max on Tuesday. It was short. I wasn't sure by their reaction - or lack thereof - if we had said the right things. I'm still not sure Max was totally tuned in. All the medications he's on... there's no telling. I'm sure he was listening, but I'm not sure he fully understood. Or maybe he just didn't want to understand. Either way, we at least made it over the first hurdle and opened the door to a ever constant discussion. Hannah and I had another heart to heart Wednesday night. We discussed the difference between being apart and being absent. Max will never be absent from our lives. Hannah is such a girl and so emotional - and yet so aware of her own needs. When we finished talking I made sure she was okay for the night and told her we can talk about this any 'ol time, she said Okay; just as long as it ends with something different. So we ended by talking about a magic drinking fountain.

Inflection point

I was trying to be creative in titling and writing this post like so many other parents have been when it has been time to convey the information that I will in this post, but creativity escapes me now.

Max is dying. He has been dying for some time, of course. Since 2004, he has been battling a cancer that had a terrible cure rate to start with, then he relapsed in 2006, then progressed this summer. Now, the neuroblastoma seems to be spreading rapidly to soft-tissue areas of his abdomen (liver, kidneys), despite continual treatment.

So, we are making plans for when Max leaves us and becomes pain free forever. Melissa and I knew that this time might come, but harbored hope that it never would, that we would be "the lucky ones." We still have a smidgen of hope, perhaps that's our downfall and will cause us much pain in the near future as we find it hard to let go of him, but without hope, what is there?

Let me give a quick update and then that will be it for this post.

- Pain: Max is on a morphine PCA pump. Last Thursday we had a horrific night - Max in so much abdominal pain that he was going practically crazy. Due to some transition issues with our hospice provider, we were caught off-guard and Max had to spend several hours writhing and screaming in pain, without anything we could do but try to comfort him with words (note: it doesn't work - try it - cut off your finger and see if kind words help soothe the pain). I fear we've done more damage to Max's psyche with that episode than shows. Remembering this night makes me so mad... sad...

- CT: we are having a CT done today to determine the spread of Max's disease. Last Thursday we had an emergency CT to determine what was causing Max's adbominal pain. It was there that we saw the disease in his liver and kidneys. Curiously, the pathology report from Max's brochoscopy procedure two weeks ago showed no disease..

- Radiation: we are starting palliative radiation to Max's liver today. We hope this relieves some of the pressure on his abdominal area so that he is more comfortable. Right now, he only wants to wear pajama pants.

I want to close with a picture of Max. So many pictures have been posted lately showing unhappy Max. There are moments of lucidity and happiness on his face, though they are fleeting. Those moments are treasures and Melissa and I are doing our best to make sure that as we capture them for the future, we also enjoy them in realtime.

Sunday afternoon, Max woke up from a late-morning nap. He wanted a popsicle and so went outside for some Naboo/popsicle time. It was only five minutes but it was magical.


Max's face is fairly puffy from the dexamethasone and morphine, and is truly the sweetest boy ever.

If I Had a Wish...

Quote of the week by Big Sis Hannah

If I had a wish, I would wish that Max's cancer would go away and stay away
forever.

Magic Water Fundraisers

In addition to the MagicWater 5 Mile Walk on Sunday, Septmber 7, 2008 here in San Diego, there will be a fundraising event Wednesday, September 24, 2008 at the Casa Blanca Salon & Spa in Fairbanks Ranch from 3:00-6:30pm.

Back to the grind

Quick update on various things tonight...

Tomorrow I go back to work. It has been a peculiar two weeks - mostly because of the Max factor. We started chemo last week, as Melissa last posted. We are set to start week 2 of cycle 1 (3 week cycle). I've posted Max's new treatment roadmap under the 'Treatment Details' section header on the right rail of the blog. We are holding on the rapamycin noted on the roadmap as it turns out Max has pneumonia (we just started antibiotics tonight). Normally, this would be a huge scare for us but we are honestly quite numb about things right now. We know that this current drug combo is likely our last shot at stopping Max's neuroblastoma.

Max's catecholamines continue to trend in the wrong direction. Check out 'Latest Lab Results' for specifics. Just this last week we were dealing with (a) chemo, (b) nausea, (c) suspected lung infection that turned out to be pneumonia, (d) constipation with the threatand of irinotecan-induced diarrhea looming, (e) leg, neck and head pain.

Two of my employees at RealAge (thanks Ron and Steph!) have put together a fundraising walk for MagicWater to take place September 7. Please check it out if you have a chance, and if you are in the San Diego area and would like to participate, please email Steph Sybert for more information.

The walk is taking place in September b/c September is Childhood Cancer Month (not to be confused with a month to celebrate childhood cancer). There will be lots of fundraisers happening during this month. Many of these fundraisers do great things for kids with cancer (like the MagicWater one). Some less-so. Pat Lacey has an excellent, emotional post on this subject.

Finally, some pics from two weeks ago when Max 'n' me visitied the USS Midway for the umpteenth time (not a terrible way to spend the day, let me be clear). As anyone who has been around Max lately knows, military aircraft and warships are his latest passion. I am trying to make some special things happen for Max at the upcoming Miramar air show Oct. 3, 4, 5. Here is Max in front of some of his fav planes on the Midway.


F8 Crusader with 'Shark Mouth' paint job



Avenger torpedo bomber - this thing is huge!



Another huge plane - F14 Tomcat ("damnit Maverick!")

Back from the Magic Kingdom

Our trip to Disneyland was okay. Max was so tired all the time and a bit sour thanks to the decadron (steriod) that we decided to take him off it slowly while we were there. This only made his pain increase which was worse for his mood. He spent all of his time outside the room in a jogging stroller because his legs hurt so much - and he was tired.

He did have some wonderful moments during his brief times in the park. His favorite rides are Star Tours and Soaring Over California, which we frequented and used the "Max Pass" - a pass similar to a fast-pass but you can use it on any ride at anytime. He also enjoyed a few rides early one morning in Fantasyland and of course the Autopia.


Max mostly wanted to sleep.

He was happy to be home Friday afternoon and couldn't wait to see Naboo, whom he thought must have missed us terribly. The cat was indeed very happy to see the kids.

Saturday morning he had an apopintment to go the oncology ward for platelets: he was critically low: 4 -- ouch. Monday found him in clinic to start a new chemo cycle. The same that Andy mentioned in the last post: temador and irinotecan. He also needed another platelet transfusion as he was at 3! (Just two days after getting platelets. sigh...) So Monday started a new treatment cycle that will find Max in the clinic every weekday for two weeks getting IV chemo in addition to the platelets and red blood he's going to need even more now that we've had to start him on some kind of toxic treatment.

We also took an xray of his lungs and left knee. He's been coughing and complaining constantly about the knee. The xray results had him in for an immediate CTscan: His lungs appeared to have extensive disease throughout. However, they couldn't rule out an infection, pneumonia, or bleeding and so a bronchoscopy was scheduled for Wednesday morning. A bronchoscopy is a simple outpatient procedure where the doc runs a camera down Max's windpipe to the lungs, looks around, squirts a little saline in there and sucks it back out to grow cultures. Because Max's platelets are questionable he had to spend the night Tuesday to get a fresh load of platelets prior to the morning procedure - just in case.

Andy brought Hannah & Nicky down in the morning before Max went in for the bronchoscopy. He was so happy to see them, he smiled and chatted. It was a nice scene. The bronchoscopy took all of 10 mintues and the doc reported back that she saw no evidence of disease inside. His upper right lung appeared to be squished by something on the outside - probably the nodules that have grown - and she said this could cause him to cough because he'd be unable to clear that part of his lung of gunk when he needed to. It looked irritated and bled a little when she flushed it. (We'll have an official report soon and will post any other findings as they become available.)

So not as scary as we had originally thought; but obviously far from being out of the woods.

Off to Disneyland!

We haven't talked about it much here, but we're leaving this morning on the first leg of our family vacation (the second leg is chemo next week - fun!). Again this year, we're treating the kids to a loooooooong stay at Disneyland - 5 days. They are all so excited, especially Hannah who is our rollercoaster kid. Max is excited about Star Tours and the pool at the Grand Californian, which is where we are staying.

We have prepared our schedule in anticipation of the lower energy levels and mobility that Max has, and have brought along a jogging stroller for him (instead of a wheelchair which kills the back of those pushing it).

Next week, the 11th, we will start on a new chemo regimen. As already noted in Melissa's last post, things are not going well with his neuroblastoma. Frankly, we know we have limited options and time to turn this thing around and move it in a positive direction. Right now, Max is taking oral temozolomide and is tolerating it well at a reduced dose of 60mg/day. He will take this through Wednesday and then we will start the new chemo next week. We're debating adding Irinotecan to the Temozolomide as he had upon initial progression (which upon retrospect and if you look at the data a certain way, appeared to be working), or trying a "frontline" drug combo like carboplatin and etoposide. The carboplatin will hit Max's marrow hard and so its a difficult choice we have to make.

So while traipsing the merry landscape of Disneyland and California Adventure today, at some point Melissa or I will be emailing our docs to communicate the decision on which chemo regimen we want to start next week.

Thanks for all your kind comments and emails. We're logging off for a week or so to have fun with Max!

Platelets and more platelets

Thursday's home blood draw was delivered to clinic the same day and they called me later to let me know that Max's platelets had already dropped to 24. He just had reds and platelets transfused Monday so I was a little surprised. He's been going seven days between platelet transfusions for a few weeks now and I had planned on bringing him in on Sunday for his weekly refill.

Well... Max had to go to clinic Friday for the refill. I wasn't sure what to do in preparation for our DLand trip, but the nurse (Beth, who is always very helpful) told me to plan on bringing him back Sunday anyway for a top-off on those platelets. As she put it, giving him more platelets on Sunday may actually put his count above 100. How bad would that be?

Obviously, Max has a platelet producing problem that is not getting any better since we stopped giving him toxic (chemo) treatments. We had hoped that by stopping toxic treatments for a while his marrow would start producing, but we are not seeing the hoped for effects of that.

Instead we are seeing rising VMA/HVA. If you haven't looked at the chart Andy has linked up, Max's 7/28 VMA=425 and the HVA=105.8. This was the second one in a row to go up up up and in all likelihood this means disease progression. Insert expletive of your choice here: ______!

We had a conference call with Docs Roberts and Sholler Friday and tossed around a few ideas with them. Funny thing is we, Andy & I, need to make the decision on what to do, what to give. I feel like we're holding the double edged sword. Max's marrow is weak. It's not producing platelets and even his red production is questionable. So while we wait to see if he can recover the damn cancer is having a field day in there. Then when we decide we have to introduce some toxic treatments in order to fend off the cancer, we're knocking his bone marrow for a loop, too.

During the conference call I asked the docs exactly what it means to be platelet dependent (this question has been on my mind for a while now). Max is pretty much there already. Platelet dependent (in my words) is when your marrow can no longer produce its own platelets. Transfusions are needed every 3-4 days to help ensure uncontrollable bleeding doesn't occur. There are instances when the body can finally make a comeback from this on its own. Many times a stem cell or bone marrow transplant is necessary.

Maybe this sword has more than two edges... Whatever the case, we are not ready to throw in the towel.

Home Visit was Great!

What a panic: I had to rush the kids home from camp Thursday to get Max's blood draw. Ha ha. The hospice nurse visit was very nice.

Deb was here to take pics (photos). Max was a little nervous about being poked at home and cried during his whole blood draw. The most he does at clinic is have a short ouchie-moment when he's being poked. Could be that I don't have a TV hooked up in his bedroom to distract him. Nonetheless, Max did great and he and I talked about having the nurse come back every week to do the same thing. He told me he preferred to get poked at clinic. Then we talked about how much time that takes compared to a home visit and he changed his mind. Yay!

One cool moment was the mic-key button change. In the past he has panic attacks during the button change. I'm not sure if he thinks his insides are going to come out when his button is removed or what. But the nurse we had at home did the switch so quick he didn't even have time to react (Deb took a great photo of this). And the nurse let him hold the old one (it wasn't too gross) and inflate the balloon. He was very happy about this. So was I.

The nurse we had this week, Heather, is not gong to be Max's regular nurse (although she's welcome back anytime - she was so good with Max). Liz was unable to make the first home visit due to some special training, but we are looking forward to having her on board. Liz was actually one of Max's (many) nurses during front line treatment when he stayed inpatient every month for his chemo.

I'm hoping Thursday was a good indication of how much more quality time we'll have as a family.

Hospice - Don't Panic

I'm sure those of you who frequent Mashed Potatoes are wondering what the story is with hospice visiting Max. Well don't panic. The staff at the oncolgy clinic thought Max benefit emotionally from a break to all his trips to clinic. Currently he's going to clinic twice per week for blood labs, transfusions, doctor checks. His counts are always questionable so he also needs to wait around to see if a transfusion is neccessary. This alone can equate to 3-4 hours. Add to that a transfusion and he's there all day.

It's been 3-1/2+ years that Max has been going there and he's simply sick of it. We used to play games, read books, draw, watch movies, go to the school room or playroom. No more. He just sits on the bed and watches super mindless TV.

The goal is for the hospice nurse to draw Max's labs here at home and delivery them to clinic. If Max needs anything, clinic will call me and let me know when to bring him down. Could it really be that simple? I hope so! I think we're all looking forward to more time at home.

Food is not a Surprise

Sunday night we had "Happy Sunday to Us!" party. (Do you really need an excuse to have a party?) Andy had been to the market, picked up crab for Max, shrimp for Hannah, and big chunk of 4-layer chocolate cake to share. When dinner was over we broke out the cake and told the kids, "We have a surprise for you! Come to the kitchen!" The three kids closed their eyes... the suspense was killing them! We lit a candle on top... "okay, open your eyes!"

"Yay! Cake!" yell Hannah & Nicky.

Max looked at us like we were dumb as rocks. "Food is not a surprise for me."

Andy & I exchange looks that say, "We are dumb as rocks." Then we open the emergency new toy cupboard and produce a new surprise. We were rewarded with a smile. Whew!

Your Comments

I can't tell you how much it means to me to get an email alert that we've received another comment on the blog. Just so you know we do in fact read everyone - because we receive them in our email as they're posted. Even the littlest "Hi" gives me a feeling that you're all out there, keeping up with Max, and that there is love and caring all over the place for our boy, even when we don't talk to ya'all all the time. Really, it's wonderful, heart-warming, and somehow strengthening.

Thank you.

Now if I could just find a few minutes to write a good post!

Official Scan Reads: MIBG - CT - MRI (updated)

These are the official reads of Max's CT, MIBG & MRI scans last week.

CT HEAD w/ CONTRAST: volume scanning was performed through the entire brain after intravenous contrast adminsitration. Image data were displayed in the axial, sagittal and coronal planes. Comparison is made with examination of 06/10/08. Comparison is also made with non-contrast head CT of 7/14/08. Ventricles remain normal in size. The calcified midline frontal epidural mass consistent with metastic disease to the skull has decreased in size since the examination of 06/10/08 and does not appear to be significantly changed since the more-recent exam. The mass now measures approx 2.6cm in maximum dimension. Appearance of the brain is unchanged. No new intra-axial or extra-axial masses or areas of abnormal contrast enhancement are identified. No abnormality of the brainstem or cerebellum is noted. IMPRESSION: decreased size of frontal epidural mass consistent with metastic disease to the skull. Findings are otherwise unchanged since the previous exam.

CT CHEST w/ CONTRAST: Volume scanning was performed through the entire thorax after intravenous contrast administration. Image data were displayed in the axial, agaittal and coronal planes. Comparision made with exam of 06/10/08. A port-a-cath remains in place with the tip in the right atrium. Previously identified right hilar mass which demonstrates relatively low density has decreased in size. The mass mow measures slightly greater than 1cm in maximum dimension. Calcifications may be present in the right hilar region. No new mediastinal masses are idenitified. Previously identified low-density mass adjacent to the left hemidiaphragm appears to be slightly smaller. However, its location makes direct comparison with the previous exam difficult. An area of increasing atelectasis or air space consolidation is present posteriorly within the right upper lobe. Muliple nodular densities are again noted throughout both lungs which are increased in size since the previous exam and are consistent with metastic lesions. These lesions appear to be slightly increased in size and number since the previous exam. The largest lesion now measure greater than 5mm in diameter. Mulitple sclerotic vertebral lesions are again identified which are consistent with metastic disease and do not appear to be significantly changed. Decreased stature of a mid thoracic vertebral body is again noted. IMPRESSION: increased size and number of pulmonary nodules consistent with increas in metastic disease. Right hilar and left diaphragmatic masses appear to be slightly decreased in size. Multiple thoracic metastases are not obviously changed.

MIBG - A total of 3.1 mCi of iodine 123 MIBG was injected intravenously without complications. This exam is compared to the MIBG exam from 6/11/08. Once again, muliple areas of abnormal uptake are seen indicating metastases. In the skull, the lesion seen in the midline anteriorly has decreased significantly since the previous study. Foci of uptade in the left humerous are somewhat less apparent, however, the focus of abnormal uptake in the right humerous is probably unchanged. Further areas of abnormal uptake are seen in the upper chest, probably in posterior ribs. These are unchanged. In the pelvis continued abnormal uptake is seen in muliple locations in the pelvis fairly diffusely. I do not see any significant changes compared to the previous study. The left proximal tibia is once again hot although it does seem to be somewhat less extensive than previously. There is, however, somewhat more prominent uptake in the right proximal tibia and the proximal right tibial shaft. In the distal femurs bilaterally, there is also somewhat increased uptake compared with the previous study as well. Some abnormal vertebral body uptake is also present. This is essentially unchanged since the previous study. It is somewhat spotty and includes areas of abnormality probably at the level of T11 or T12 and probably in the lower lumbar spine. The whole body images also suggest areas of uptake posteriorly in the skull which are unchanged although, again, the area anteriorly is diminished. Some areas of abnormal uptake have decreased, expecially in the anterior skull. There are, however, increasing areas of uptake particularly around the knees. This probably indicates further metastic disease. Once again noted are abnormal areas of uptake in the left proximal tibia. Additional areas of abnormal uptake are seen in both proximal femurs.

MRI Entire Spine w/and w/o contrast. Comparison to 06/16/08 scan. Technique: Sagittal and axial T1-weighted images, sagittal and axial T2 fat saturated images, and sagittal and axial postcontrast T1-weighted images were obtained. FINDINGS: The bone marrow signal is diffusely abnormal. All levels of the vertebral column appear involved with the exception of the sacrum which may be spared vs. partially involved. Of note, there is no intraspinal abnormality. The spinal cord signal is intact. There are no enhancing masses within the canal. There are no paraspinal soft tissue masses. Of note, many of the vertebral bodies are slightly bowed compared to the prior study which represents multiple vertebral body mild compression not unexpected given the diffuse infiltrative involement of the bone marrow. IMPRESSION: Compared to the prior study, there has been interval onset of multiple vertebral body endplate bowing consistent with mild compression fractures, not unexpected given the diffuse bone marrow infiltration of the vertebral column related to the bone marrow infiltration. There is no obvious interval change in the degree of infiltration compared to the prior study.

Dustin Cobb an Angel

We received a note from Dr. Sholler this morning that Dustin Cobb passed away peacefully this morning in his mothers arms... special prayers for them today.

This Week in Review (and it’s only half over)

Let’s start post-Star Wars. Sunday night max woke up 11:00pm screaming and clutching his head/forehead/eyes in pain. This went on for 20-30 minutes with a minute or two of “calm” here and there. It was horrendous. The pain was so bad he eventually threw-up several times. Andy & I didn’t know what to do except give him lortab and wait. We phoned the doc on-call, got his opinion, and drove Max to the ER at midnight for a three hour tour. By the time we were half way there his headache had subsided and he was just sleepy. The next three hours were pretty much a waste of time. Andy and I got a great three hours of sleep that night. Ah… refreshing!

Monday found Max & me at clinic to talk to one of the oncology docs about the previous nights’ ER visit. Decided to get a quick CTscan of Max’s noggin to see what may have sparked the headache. He continued to have two more headaches during the day – not as bad though. He also needed his weekly platelet transfusion which took all day… Beth! Just kidding – I was too tired to be upset. (The joke here is that one of Max’s nurses misplaced his platelet order and we discovered the error…oh, about four hours later. You can see I was really on the ball, too, letting so many hours pass without noticing.) I think Max was comfy hanging in a bed all day after his ER visit. **Max’s CT showed that the skull mass has decreased. Good news. Headache may have been caused by one of his meds.

Tuesday Max went for a physical therapy appointment in the morning, cancer camp from 11:00-3:00, and an MIBG injection at 3:30.

Wednesday was huge scan day: MIBG, CTscan of the head and chest w/ and w/o contrast, and an MRI of his entire spine. Andy & I get to watch the MIBG as it appears on the computer screens and get instant feedback. Max’s skull definitely had less uptake in the area that was radiated. His thighs looked a little less bright as did the iliac crests. Other areas looked the same as the previous scan, with a little more enhancement in his tibia (shins). So from the parent-reading-the-scan-perspective, some things looked better and others looked a little worse. From my perspective, I was somewhat surprised that the whole scan wasn’t riddled with neuroblastoma and that there were spots that had improvement. We’ll have an official reading hopefully Thursday where all the scans are looked at together and compared to old scans.

Thursday will find Max at cancer camp from 9:00-2:00 (hopefully) and back to clinic in the afternoon for vinblastine.

Friday may be the only day Max gets to spend the whole day at camp 9:00-3:00.

So how’s Max feeling? He is constantly nauseated. He carries his barf-bin around like a security blanket and appreciates quiet. His nausea and diarrhea have been going on for weeks. Leg pain persists. Walking is difficult and painful. Decadron, one of the meds Max takes for pain is a steroid and makes being around him like walking on pins and needles… his mood can change from great to crying or angry in a heartbeat. He notices his own uncontrollable moodiness, too, and it makes him sad.

Star Wars: The Max Wars - Coming to a Theater Near You!

The day started out fairly normal. We hosted a cub scout meeting at our house for Max's Wolf Den. The goal was to decifer codes and the boys earned some badges along the way. The meeting quickly deteriorated and the boys were off playing shoot 'em up. I found a box of robes and light sabers along side the house and thinking one of the other parents had brought them, I handed them out.

Shortly thereafter, a stranger appeared in the yard. He said he was a Jedi Knight, Obi-Wan Kenobi, and that Dark Forces were at work in our 'hood. He needed brave and steadfast help. "Would you children be my Padawans?" he asked. Of course! And so a mini Jedi Training course ensued. The kids learned how to move their sabers correctly and how to do Jedi mind tricks! Fabulous and just in time, too! A Stormtrooper came trouncing into the yard. Yikes. He was clearly outnumbered and on a scouting mission for the dark master himself, Darth Vader. Jedi Kenobi showed the padawans how useful the mindtricks are against Stormtroopers. (They loved this!)

"Stormtrooper, dance like a chicken," he said as he waved his hand. And guess what? Chicken dance! They tried a few others like act like a monkey, walk like an old lady, be a bear. Then he snapped out of it and fled. HA-HA!! Unfortunately for the Padawans, the Stormtrooper returned with DARTH VADER.

The Dark Ruler of the Empire agreed to take a few pictures.

But as you can clearly see he was not pleased with this. He even put up with some psuedo-sabering against the young padawans.

This is what happened next... (lucky for us it was all caught on tape)...

Produced, directed, edited, voice-overs, yadda yadda yadda courtesy Daniel Sturt, Max's teachers' husband.

Well, thank goodness DV packed up the Death Star and left, (we found his keys for him), because CHEWBACCA showed up and he was in a great mood. You do not want to be around a moody Wookie - they tend to pull arms off people. Instead, he simply picked all the small children up and talked to them.

No one claimed to have any idea what he was saying, but I think all the men and boys understood perfectly well.

Max loved this. I mean, how can you go wrong with a great big furry Wookie?

For even more photos & videos of all the kids with our guests please click here. These were taken by one of the SDSWS members. Lots of great video clips for the kids messing with the stormtrooper, battling Vader and more!

San Diego Star Wars Society

We need to send a HUGE thank you to the folks from the San Diego Star Wars Society for making a special trip to our home yesterday as a surprise treat for Max and his Cub Scout buddies.

We had a Storm Trooper (Linda), Obi-Wan Kenobi (Jedi Dan, says his license plate), Darth Vader (Felix), and Chewbacca (Grant). **Chewbacca had to take over 45 minutes to get his "face on" for the kids. He was Chewbacca. His jaw moved, he was 7' 3" tall and he could make the Chewy sound!

Andy & I have been in contact with SDSWS since last year and were finally able to set something up. They read Max's blog and wanted to do something special for him... they hit their mark and well exceeded it. As you'll see in the next post down the kids had a hoot. (So did the parents.) Be sure to check back for more and more photos - we had seven parent photographers here!

Thank you to our Star Wars guests who were able to come to our home. You are really nice people and we are happy to have met you. Thank you, thank you, and thank you again. You made a little boy very happy yesterday.

PS to Felix: we hope you think the video is an entertaining as we do. Andy & I had tears coming down our cheeks from laughing. We hope you do, too.

What is Heaven?

During Max’s second full day in-patient for “the fever” we finished book 1 and started book 2 of the Little House on the Prairie series. He really likes this stuff. There are lots of wild animals and hunting stories, bee hives, bears and panthers, creeks to ford and possible Indian sightings. In the last chapter we read this afternoon the family was trying to cross a swollen creek. When they finally reached the other side Laura realized that Jack, the family bulldog, was nowhere in sight and probably drowned trying to follow their wagon across. She was very upset and wanted reassurance that such a good dog had a place in heaven.

Max rolled over slightly to face me from his hospital bed and said, “Mommy, what’s Heaven?”

I was slightly stunned perhaps because of the setting, perhaps because of the timing, perhaps because I want to know exactly what Heaven is sometimes, too, knowing that my son may be there alone, without us someday.

I answered, “Heaven is where people go when they die. Gramma Chris is there.” He nodded – he knew that from before. I had to stop reading then. Emotions overtook me and it was all I could do not to cry. My eyes brimmed with tears.

Max rolled back over and fell asleep.

Neutropenic Fever

Yay - every cancer parents' favorite occurrence. Neutropenic fever is when your kid has an ANC<500.>101 = overnighter in hospital for at least two days, up to ten days. woo-hoo, no exclamation point.

Yesterday afternoon Max put himself down for a nap on the couch. When he woke up I thought he felt a little warm. By the time I got back with the thermometer he felt really warm. His temp was 101.5 yuck. So we made the appropriate phone calls, packed an overnight bag and movies and Max & I headed out the door with Nicky screaming in Andy's arms that he wanted to come with. (Hannah was at a friends house having a great time.)

By the time we got half way to the hospital I could tell Max was feeling alright because he was chatting like a parrot in the back seat. Hmph. He had no temp when we arrived, but this is a scary occurrence and kids can get really sick at times like these so we aren't going to take any chances and blow it off.

Got Max all checked in, drew a blood culture and labs and settled in for a good nights rest. ha ha.

Andy & I spoke with the doctor on the floor this morning, Dr. Ahn, and the hypothesis is this regarding Max's abdominal pain:

Rapamyacin (which we already believe is causing his diarrhea and tummy pain) causes inflammation and deterioration of the intestinal lining and severe tummy cramps and pain in general. In order to correct this problem we need to introduce really slow formula/pedialite feeds continually throughout the day. We'll also add glutamine back to his diet (Max was on glutamine while on rapa prior to this and we wonder if that's why he didn't have such a reaction the first time around).

We'll have to wait to see what the outcome is, but it certainly makes sense. Regarding his low ANC the doctor has also ordered IV gcsf to bring up his white blood cell count. Max is feeling fine for the most part. Certainly not feverish and yucky feeling, so we hope that with the gcsf his counts do come up and then he can most likely come home tomorrow.

Weekly (ha ha) Update

Thursday, July 3rd: Where are we… let’s see. It’s been a tough two weeks (emotionally) and I expect that to continue. But let’s start with today: even though Max and I are spending the day in clinic his attitude and mood are great.

Max, Nicky and I dropped Hannah off at Surf Camp 8:30am and headed up to Starbucks for hot cocoa and bagels.


Hannah's surf camp team photo (she's kneeling on the right of the instructor/red hat) - she did great and definitely got the 'stoke' by standing up her first day and continuing to improve throughout the week.

We picked up an extra dozen for his buddies at Radiation which was the next stop… a follow-up visit with Dr. Murphy, Max’s radiation-oncologist. Max loves his radiation techs and wanted to give them a present so we settled on bagels. They were very thankful! Nothing new at radiation – just a follow-up meeting with the doc.

Next stop was clinic. Max was due for Vinblastine, cbc’s and pee-in-a-cup. Platelets were low so we’re hanging out for a transfusion, too. We arrived at 10:30, Nana picked up Nicky for the day, and we’re still here at 3:30 and the platelets haven’t arrived yet. Yes. It can really be a long day. At this rate Max won’t be done here until after 5:00.

Max has been battling diarrhea the past two weeks, possibly from rapamyacin. We dropped it a few days ago and waiting patiently to see if it was the cause. He was having severe abdominal pain with it – not fun to witness when you can’t do anything to help. Yesterday that let up, but the diarrhea continues. He hasn’t had any ‘nutrition’ in several days and is living off of pedialite.

His body aches and pains seem to be more under control currently thanks to methadone and lortab with an occasional dose of decadron. His walking is labored – but he is walking. We haven’t used the wheelchair since the last week of school.

As for treatment, Andy usually does the write-up on that, but I’ll give it a shot. We’re giving Max a one week break from toxic treatments. Hopefully his marrow will start producing again. It’s scary to know that your child is dependent on blood products. A place Andy & I never wanted to be. Next Thursday we may try a new combo or cocktail as we like to call it: Cyclophosphamide & Etoposide, w/ a twist of Vinblastine. We’ll be replacing rapamyacin with cyclophosphmide possibly. We’re still trying to determine if the rapa is the cause of Max’s diarrhea.

Friday, July 04, 2008: we just returned home from a great BBQ at our neighbors home who also have a great view of the fireworks at the fairgrounds from their backyard. The Thurstons help us all the time with Hannah when Max needs to make hospital appts. They are wonderful neighbors and friends. We’re lucky to have them!


Hannah at the Thurston's pool, overlooking the Del Mar racetrack/fairgrounds where the fireworks show happens.


Nicky enjoying the party and what appears to be a scotch and soda... remember, he's a third child and the brother of a cancer fighter... as such, he's generally left to himself and has advanced accordingly during all the unsupervised time he has.

The kids also participated in the Del Mar Powerhouse Park 4th o’ July decorated bike parade this morning and we spent a few hours at the beach. All in all, a wonderful summer day!

Naboo

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.

Memories

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!

Epicurus

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.

Disappointment

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.

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.

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