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.

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.