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!



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!



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,

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!


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.



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


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:


Scan/Pain update

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

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

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

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

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

After radiation and 3rd ambulance ride.

Max's 1st Ambulance Ride

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


Pain Relief

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

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

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

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

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

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

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

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