Max passed away at 8:45pm Sunday, August 31, 2008

This will be an evolving post:

Update - 9/1 6:55pm
For anyone wanting to contact us for any reason, Melissa's sister, Randee, is going to serve as our go-between. Her contact info is:

We would like to make a request at this time that instead of flowers or gifts in memory of Max, please make a donation to the MagicWater Project. More than ever this is where our our efforts will be... to help prevent other families from having to suffer the loss of a beloved child like our Max. Thank you.

Update - 9/1 2:00pm
Andy & I are planning Max's Celebration service. Tentatively, we are shooting for Saturday late morning, September 6, 2008 in Del Mar at Sea Grove Park.

Update - 9/1 5:55am.
Missing Max terribly already. Two moments of magic Sunday morning captured on video. This was the real Max.


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:
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


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.