Top Ten Signs You’ve Been Fighting Neuroblastoma Too Long

Shout out to Margo for coming up with true comedy (that which is funny and makes a point that otherwise would be difficult to make without humor).

10. Every time your child gets a fever you hope it spikes to 101 or higher.

9. You’ve ceased to register the shocked faces at preschool when you off-handedly say, "Oh we can’t make it, we have chemo that day."

8. You’ve started inviting the nurses over to dinner

7. When you are at the ENT with your other child talking about removing his tonsils and the doctors says, "It’s surgery you know, it requires general anesthesia," you involuntarily go "Pfff."

6.When your child is diagnosed with pneumonia, you hope it’s the viral kind on the off chance pneumonia is an oncolytic virus that kills neuroblastoma cells

5. You can spell "pneumonia" and "oncolytic virus"

4. You don’t even flinch at throw up at a birthday party and help clean it up even when it’s somebody else’s child.

3. You can sleep through a stem cell transplant (stole that from the Londons)

2. When your child says something hurts you hope he or she has broken a limb somehow.

1. You have a hard time drumming up sympathy for Elizabeth Edwards and get ticked at all the cheery articles on how great it is to live with cancer these days.

General Grevious Gets Gushed

Tuesday Morning
7:00am - Max is a trooper. He's still not eating much but we'll pick up a prescription for a new appetite enhancer this afternoon at clinic. Breakfast was a flop, however, he powered down almost all of his pills (keep this in mind).

9:00am - Nic has an appointment with the peditrician. While I'm checking in I get a phone call from Hannah & Max's school. Its the school nurse: "Hi, Mrs. Mikulak. Max just threw up in class. He's here with me in the nurses office." Ok, um... I can be there in about 30 minutes. Is he feeling okay now? "Yes, he seems to be in good spirits." Ok, I'll be there as soon as I can.

So I get through Nic's appointment: he's a little anemic which could be caused by a virus or ??? And it appears he has a hernia in his diaper area if you know what I mean... So I just need to schedule an appointment with the surgeon, Dr. Hilfiker, who happens to be Max's surgeon, too. (I do not have time for two sick kids. What are these children thinking?)

Back to Max: we get to school and Max is reading happily along with the nurse through a big book of birds. He's happy as a clam and ready to go back to class. I excuse myself and trot down the hall to speak with his teacher, Ms. Weitz, to find out what happened: Today was Max's turn for the Secret Sack (show and tell). He brought his brand new Star Wars Lego General Grevious figure with four light sabers and the empty box showing the cool Lego ship that he has at home. Apparently he got a little excited about showing his new toy and nervious about talking in front of the class and promptly threw up IN the lego box. Ms. Weitz found herself impressed with his throw-up know-how. Mommy quickly remembers that he ate nothing this morning except a handful of pills. Hmm...

The good news is that he went back to class and felt fine the rest of the day.

Chemo VI

Max just completed his sixth round of cyclo/topo chemo. At this point the mix is working and we will stay this course until Max is again in remission or the NB cells become resistant to the current treatment. At which point a change would need to be made... however, Max is not at this point and is responding nicely.

Now that he is off-study for the nifurtimox (still taking these) we have added vitamin C and zometa (a bisphosphonate bone strengthener) to his cocktail. His first infusion will be Tuesday. The preliminary studies from Dr. Sholler's lab show that nb cells responded even better to the nifurtimox + vit C. The bone strengthener just seems like an obvious choice due to the fact that the cancer is attacking his bones. There is a study on this somewhere.

Back to Max: He was very tired this week and actually took a nap today in clinic during his post chemo hydration. His appetite was really low. Today he barely ate at all. He has been getting his overnight nutrition, but it's vital that he keeps eating by mouth, too. I'm trying to figure out what the cause is: he is post surgery on his g-tube, it's chemo week, we're feeding him over night. I dunno. I've decided not to call his overnight feedings "feedings" anymore. I don't want him to think that's his new way of eating. We'll figure it out.

Signing out for tonight with a big yawn. Melis

Butterflies

Syd lost his son James to neuroblastoma, and below offers words of hope for the parents who's kids have probably reached the end of their fight with this evil disease. His message below is to another NB parent who wrote today to Penelope's parents, expressing his grief at Penelope's state.

Henry,
Five years after losing my son to this monster disease I find that dealing with the trauma of watching his suffering is as hard or harder than the loss itself. It is because I do not want other parents to travel this road that I pour heart and soul into the James Fund. But I can say from my experiencethat neuroblastoma cannot defeat the spirit of our children, and it cannot match the strength of the love that surrounds the NB children. I would add that contrary to my thoughts at the time, it is possible to find life after NB, and it is possible to be happy, fulfilled, and to enjoy and cherish my surviving children.

I would go further, and say that although I instinctively label myself a failure for not saving my son, I perhaps have been able to contribute something to making this world a better place, if even only half the nice things people say to me are to be believed Now while I was in the place that John and Aimee and others find themselves today, and in the tremendously difficult time that followed, it bothered me ferociously that I did not love my other children as much as I loved James, and that my relationship with them was of a much milder quality. Well wake up Syd, what do you expect if you spend months and years of 24/7attention on a child, dodging the bullets in the trenches, living life's worst fear, and then try to create that same relationship with the "normal" siblings. One of the gifts of childhood cancer is that you get to know a child intimately, it is a relationship that normal parents can never experience. The loss is the greater, but the legacy can help you change this troubled world.

So I am writing all these words as I wait for the next performane of my 14 year old daughter Rebecca at a dance competition Rebecca was pretty cut up as a nine year old, grieving for her eight year old brother. Now she is a confident, cheerful, loving and accomplished young lady. And as I watched her dance, of course I cried quietly in the darkened auditorium, as dads do, but not just for the reasons normal dads do. I cried because she has managed to build a beautiful life despite years of being a second class sibling, despite the lack of stable parenting, despite the enshrining of her brother throught the James Fund and my book, despite the ongoing media fuss about her brother. I cried most of all because I thought of Penelope London, whom I saw smiling and laughing and dancing just three weeks ago, and who loves to run and leap and catch butterflies. What can be done with all our tears as we witness the horror of neuroblastoma? I am just a dad, I have no professional qualifications to comment on such hard things, but it seems to me to boil down the choices. Am I going to let tragedy destroy my family? Am I going to let neuroblatoma fill my life with its fear and horror? It was my son who said "Ya can't let cancer ruin your day" and so we put those words on his tombstone. And every day when as usual I don't feel like getting out of bed, because, remember, I'm a failure, then I remind myself that ya can't let cancer ruin your day, let alone your life, and that it is time to choose to get out of bed, and nurture my daughter, so she can dance, and my son, so that he can run, and my wife, so that she can sing.

My best wishes to you Henry, as you slay your dragon.
Syd. Wife of Pam, father of
Rebecca, James and Ben.
www.jamesfund.com

Penelope

Darling Penelope London (http://www.caringbridge.org/ny/penelope/index.htm) has gone into hospice at home. Please read her father's post below from last night, go hug your kids if you have them, and then perhaps decide to do something to help in the fight against this absolutely evil disease that strikes those who are least able to defend themselves against it. Penelope can't appear on TV with her husband and presidential candidate to talk about her disease. She can't stand at the podium in the press room of the White House and share her story. Her battle is invisible to most of us, but it is the most courageous battle of all, and it deserves better. There is not one drug that has been specifically developed for pediatric cancer. All drugs used to treat neuroblastoma are used "off-label", unlike higher-profile cancers like breast, lung and prostate which attract the research community's and pharmaceutical company's attention, focus and effort.

Thursday, March 29, 2007 7:07 PM CDT

I am writing this entry so that I remember it in the future. I am hoping it will help Catherine and me and our family one day....

Penelope is doing very, very poorly. Tumors are protruding from her skull, eye socket, spine, abdomen and are in every bone of her body. We know her time with us is so very short. She is in extreme pain, her vision is impaired and we have her on pain medication around the clock.

I was just lying in bed with her, holding her in my arms and I told her "I know you feel very yucky right now. Daddy wishes he could feel yucky instead of you". Penelope shook her head and said to me "I want nobody to feel yucky". Her eyes were closed and she went back to sleep. I squeezed her a little tighter and with tears coming down my face I said "thank you so much for saying that Penelope". She wants us to be happy. She doesnt want us to suffer. She is an angel as she seeks to keep her family from pain. We are so amazingly blessed to know her, to have her as a member of our family. We just want her to be as comfortable as possible in the period to come. I pray she is spared more suffering. Catherine and I tell her soon she will have no more pain and she will be chasing butterflies and laughing and singing. We love you so much Penelope.

Please keep her in your prayers.

Catherine and John

Surgery photos

Mr Skinny arms doing homework.


Port... Max's second "plug" on his body.




Cute photo of Nic just had to include... tonight, blowing bubbles as the fog rolls in and the temp drops.

G-Tube Surgery Complete

Thursday Day 0 Post-op: G-tube surgery went well. However…

• Max woke up ready for a popcycle in post-op, as is his routine, just to discover that he would be unable to eat anything for 24 hours post surgery (add to that: he hadn’t eaten for 18 hours already)! Mommy learned this info at the same time and was immediately horrified at the prospect of being in a room with Max over the next 24 hours. It turned out to be just as exciting as I ever could’ve imagined. Not only was he hungry but very sore from surgery.
• For some unknown reason the anesthesiologist decided to give Max an arm IV instead of utilizing his port-a-cathe while he was under, which meant we had to access his port when he was awake, hungry, tired, and sore later that evening. It was a joy, I tell you. Mommy had to hold his arms down so the nurse could pull the tape off his chest. While we did this he screamed and screamed and cried at us, “I CAN DO IT! I CAN DO IT!” which then changed over to “BAD MOMMY! BAD MOMMY!” looking me straight in the eye while I tried my damnedest not to cry. It was over in a minute that seemed like forever. It sucked.

Friday Day 1 Post-op: This morning he woke bright and early already asking for food.

• His orders to ahead with g-tube nutrition starting with pedialite were in by 8:00am but, of course, it took until 11:30 to make that happen. What a pain in the ass. My friggin’ kid is starving and in pain… hello?
• Meanwhile back at the ranch… I find out that we will not go home today because they have to make sure his stomach is going to tolerate food okay following the surgery on his stomach (makes sense, but no one ever mentioned that to me. I think I heard “one night stay”.) In fact, we’re probably going to be here until Sunday, because we also have to learn how to use the g-tube properly and care for it and the surgical site.
• At 1:00pm Dr. Roberts came in and told Max he could start eating food by mouth. My sister, Randee, was here with Max and got to be the food-hero. He ate several bites of: Pirates Bootie, cheerio’s, bagel, sourdough bread, blueberry muffin, pretzels, choc-chip cookie and ½ a banana. Then he ate some chicken noodle soup and half a cup o’ mashed potatoes for dinner.
• Can we talk about a food-induced attitude adjustment? Even better than his pain-meds and morphine. He was smiling and humming all afternoon!
• Tonight they started running the kids’ formula at a low rate through his g-tube. We’ll increase the rate at 6 hour intervals to make sure he’s digesting it okay. I learned how to set the pump up this evening for the all-night feeding. At midnight I learned how to check his stomach for ‘residual’ before pumping more nutrients in using a giant syringe, although I'm not sure when I would actually utilize this knowledge. It’s a little gross but I imagine I’ll be over it midweek. The prospect of Max putting on some pounds outweighs any and all ickiness.

Saturday Day 2 Post-op: Ahhh, finally some good news.

• We had a great, on-the-ball nurse today, Sarah, who answered many a’ question and helped Max get all his ducks lined up for check out today! Yes, as of 2:30pm he was home eating kraft mac & cheese while building his new lego ambulance that Hannah & Daddy picked out for him.
• HomeCare came by this evening and helped us set up an IV pole in Max's room and went over with me again how to set the pump for nighttime feedings. Wow, we have durable medical equipment in our home...!
• He's going to get about 300ml of a kid protein drink while he sleeps tonight. We'll boost the dose as he adjusts up to 750ml per night probably by the end of next week.

Sunday will be a day off for our whole family. What a relief. Monday finds us back on schedule with Max's next round of chemo (this would be a good week to leave some soup at our front door!). The action never stops here at the Mikulak household. Sheesh.

In a nutshell: the g-tube surgery and recovery was far more laborious than we had expected. Now that I see the thing on/in Max (photos posted soon for your viewing pleasure) I see why and I am disappointed that we weren't given better info to then prepare Max for what lay ahead.

Max update

Visited Max tonight after work. Hannah was with my dad and Nic was with Melis' parents for the night. So here's the scoop. His 'mickey' is right above his belly button. Its about the size of a bottle cap and plastic. There's a removable lid which just hangs - sorta like a gas cap - when removed. You can then attach different types of tubes, some for getting fluid via a pump overnight, some for a quick 'bolus' of liquid. We can even give him any meds that he won't take orally (though that's not really a problem). Post-surgery, he still can't eat until tomorrow and so he's very sad and cranky, as we all would be! Talking with Melis tonight a little bit ago, he's in some pain from the procedure and the nurses are a bit slow tonight in getting his IV removed and his port accessed so that he can get some additional pain meds and zonk out for the night. I'm sure tomorrow will be a better day for him.

Driving from work over to the hospital, another NB dad called me and asked about Max. I told him what I knew and he commented on how this is so unique to cancer parents. Something like this would probably be a HUGE ordeal in other households but its all part of the game - cost vs. benefit - of treating cancer. We know our kids are stronger and better for having this experience, tough as it is to imagine wishing this on anyone (which I don't).


Here's Max sleeping peacefully while I sit with him and Melis grabs some lovely CHSD food.

Out of surgery

He's awake. But not allowed to eat today. Not good.

He woke up to a new Lego set that he's been craving. Very good.

Now let's hope we can start putting some muscle back on the boy. Hopefully will have some pics to post later... I'm curious myself what the g-tube actually looks like.

Max goes into surgery today for g-tube

Max will be going in around 11:30am this morning to have his g-tube insertion procedure. Shouldn't be a long one which is good. We held back from telling him until last night and he was actually happy about it, as we had been hinting (as part of our failed attempt to get him to eat more) that he might have to have a tube put up his nose. Hopefully this does the trick. His appetite has improved somewhat but we're committed to doing this anyway until we can see some appreciable weight gain in him. Still on track to start chemo+zometa+nifurtimox+ascorbate on Monday.

No Chemo Today + Getting a G-Tube

Max was scheduled to start up chemo today, but his ANC (infection fighting part of his blood) is too low. So we have to wait and try again next week.

I just hate when this happens. It used to bug me because I had the whole week figured out with Hannah & Nic and had to redo it for the following week. Now I'm just pissed and worried because it means those damn NB cells have more opportunity to grow and invade. (OK, got that off my chest.)

So what's a G-Tube, right? It's a feeding tube that we're going to have surgically implanted in Max's tummy to feed him while he sleeps at night. His eating habits are so poor. He actually lost a pound last week. He is so painfully skinny - almost 6 yrs old and under 36lbs. He has no energy and he just wants to rest all the time. We'll be able to pump lots of calories into him every night, plug the hole, and send him off to school. I'm sure it's more complicated than that but the other parents say it's the way to go. So, sign us up.

We're looking at a possible surgery for the g-tube on Thursday but may have to wait until April 1 for several scheduling reasons.

Max - eating issues

Tomorrow we're consulting with our onc about getting some artificial help for Max's nutritional issues. The darn kid just isn't eating. Last week was tough. He had the flu but by the time we were home from Vermont he was feeling better. And we hoped that with the flu gone and being off the Nifurtimox for the better part of the week, that his appetite would come back. This morning (Sunday) he woke up and asked for french toast. Hurrary! The appetite is back. Max ate a whole piece of french toast (yes, sounds not so huge but considering what he hasn't had to eat in the past week, it was a monster-size meal for us/him). Too bad though, that was the last thing he would eat all day.

At dinner, Melissa and I leaned on him to eat two chicken nuggets and we were rewarded for our tenacity with an-almost-Linda-Blair-like puke all over himself and the kitchen table. We're 99% positive it's all mental at this point, as there is likely no stomach/GI issues that would make him lose it like that. So, while I feel horrible for having pushed Max to eat this evening, only to make him throw up (and he was bawling the whole time so clearly upset), for me at least it sealed the need to get some nutrition and calories into him on a regular basis via artificial means. I've read some good things other NB parents have said about the g-tube, or gastrointestinal tube, that allows them to add 1,000 or more calories to their kids while sleeping or inactive. That would be huge if we could do that. On Thursday Max weighed in at 15.8 kg.... just about 30 lbs. Not good.

Last Trip to Vermont

We're back in Vermont for the end of Max's Nifurtimox trial. We left on Wednesday (3/14) and are coming home today, 3/17. "We" being Melissa, me, Hannah and Max. We left Nic at home with Melis' parents - word was that he was spotted walking around their house clutching a photo of our family kissing it. :(

Last night and right now, it's snowing in Burlington - a Nor'easter. Our flight at 8am today was cancelled by noon yesterday, but we're re-booked on a 2pm flight today through Dulles (no directs to SD obviously) that we hope gets us home around 830/9pm SD time. Before we leave today I'll take Max out in the parking lot and bust through some drifts (we rented an Xterra as Max likes "Jeeps" and similar).

Yesterday, we attended a conference - Developments in Neuroblastoma - while the kids were babysat at RMH Burlington. It was a fabulous conference organized and hosted by the wonderful Dr. Giselle Sholler who cares so much about our NB kids. Besides some of the big names in NB research, Drs. Maris, Matthay and Modak, there were other UVM researchers presenting some fascinating work in the areas of cancer stem-cells, genetic origins of NB and more. While much of the presentations were so science-heavy Melis and myself couldn't grasp the meaning of what was being presented, we still felt good being there, along with some of the other parents who attended, in order to represent our kids and the ultimate reason everyone was there - to find a cure for this damned disease.

The trip out here was pretty hectic, to say the least. First, we had a 6:20am departure from SAN on Wednesday. So it was a 4am start for us that day. Of course, that Monday Max caught the flu bug that Nic was just getting over (as we dropped him off at Nana & Tata's house that night for 4 nights). So the next day while traveling, Max was wiped out completely. Sleeping most of the time on the flight from SAN to ORD, he threw-up as we were running to catch our connecting flight to BVT. Oh, he also has bone pain, in addition to just being weak from not eating for days and the flu, and so I was carrying him as he started to puke. Luckily we were right next to a men's restroom and so we didn't make too much of a mess ;) Poor guy! I was ready to kill anyone who even said anything negative as I helped him finish his sickness and clean up. Finally, we got to our gate (as usual, United sends the WRONG gate number through their texting service to your mobile phone) in the other terminal just in time to get going.

One of the other great things about this trip was meeting Syd Birrell and family. Syd's son James passed away from Neuroblastoma in 2001. You can visit their website here: http://www.jamesfund.ca/. Syd wrote a book titled after one of James' quotes, "Ya Can't Let Cancer Ruin Your Day." During the course of James' treatment, Syd created the James Fund for Neuroblastoma research. He was able to enlist Tom Hanks to lend access and awareness to the James Fund cause and so far Syd has raised more than $2 million dollars for NB research in Canada at Sick Kids hospital in Toronto. Neil Hutchison, father of Sam and fellow San Diegan, and myself will be tapping Syd's brain for ideas to help do the same here in the US.

"Max eats two cheeseburgers at McDonalds"

Max's proud parents were seen with tears in their eyes and joyful thoughts of how this could be the turning point in finding something that the boy will eat. "We've been pushing Max to eat... eat anything. We'll drive you around the world in search of the perfect food." Today, they settle for Mickey-D's.

The Results Are In!

Max's MRI and MIBG (bone) scan went well this week. Dr. Roberts call with the results and this is what we know:

• MRI – shows decreased enhancement all along spine. It still shows signs of enhancement on two biggest points on spine (first two spots to show up originally) and some enhancement here and there.
• MIBG – only shows uptake on one spot along the spine that correlates with MRI reading.
• How do these two correlate? GCSF can cause the MRI to look like there is activity similar to what is being seen (activity here and there caused by the GCSF in the bone marrow creating white blood cell development). Also, the one spot on the MIBG could be the only “live” cancer cells with the MRI showing the live and dead tissue along with the GCSF reaction.
• The consensus is that the disease is going away at this point.
• Treatment should stay the way it is as it appears to be working. Continue on current chemo. Adding bisphosphonates, calcium, Vit D and possibly Vit C infusions. All to start 3/19.

This is pretty much what I was expecting and we hope that the current cocktail of drugs continues to work on these cancer cells. The fight is long from over.

Our newest issue is Max eating - or not eating I should say. Had a long discussion with his oncologist about this, too. Here's the scoop:

• Max is down to 16.3 kilos (35.86lbs) from 17.2 (37.84). If we can’t find a way to get Max to eat and he loses one more kilo Dr. Roberts suggests that we put him on IV nutrition for 2-3 weeks everyday. This will require daily clinic visits for up to 12 hours each day. This, however, is not a long term solution.
• We’re still working on the Megace: increased dosage from 4.5ml/day to 6.0ml/day with no results thus far.
• This week Max started antacids to counteract the possibility that the nifurtimox is contributing to his appetite problems. We pondered the possibility of taking Max off the nifurtimox for a week to see what would happen, however Dr. Roberts does not want us to do that, but wait to see if the antacid does work over the next 2 weeks.
• If results are still piss-poor we’ll move Max from Megace to a different appetite medicine to see if that works.
  

Upcoming events

Coming up:

• March 1 Thu - Clinic Appt (I'm not making any predictions about transfusions!)
• March 5 Mon - Clinic Appt
• March 7,8,9 Wed Thu Fri - MIBG injection, MRI & MIBG scans to see what's happening inside Max's body.
• Mar 12 Mon - Clinic Appt
• Mar 14-17 Wed-Sat - Trip to Burlington VT for end of Nifurtimox Study and NB Conference
• Mar 19 Mon - Chemo VI slated to start

You are incorrect, sir!

Okay, so I was way off in my transfusion prediction! Max didn't need anything today at clinic... his reds were good and his platelets were way up there. Last nights' shot didn't even leave a bruise. He was a little moody this morning. Nothing like yesterday. He was even back in school by 10am hanging with his entourage.

I guess everybody has a bad day. Yesterday was Max's. Today was definitely better. We'll take it!

Bummer Weekend for Max

We're 6 days post chemo and Max's blood counts have plummeted. His reds were only 8.5 on Thursday with every indication that they'd be dropping over the weekend. (For reference: transfusions take place for reds at 7.5-8.0) His platelets are also really low again with bruising on his legs where I have to give him his GCSF shots.

The poor boy was feeling low yesterday, Saturday, but today was just about the lowest I've seen him - everything made him cry and we were doing our darnedest to keep him happy. He spent the whole day at home, by choice, curled up on the couch in his jammies with his blanket. We watched some TV and read a book about pirates. He didn't even feel like playing his Star Wars video game! A little later in the afternoon he ventured out to the dining room to play with his legos for a while. He had a good breakfast and lunch but was so pooped by dinner that he just wanted to go to bed... 5:30pm.

I'm looking forward to getting him to clinic tomorrow and filling up his tank. I expect him to be a mess in the morning and a chatty-cathy on the way home.

Auch... it's been a tiring day.

Chemo V Started

Just a quick note while I'm home collecting stuff for an overnight stay at the hospital:

Max's counts were great today and he's starting his 5th round of chemo. Unfortunately (for us parents) Max has to be inpatient. Starting on a Thursday means he'll need to receive the chemo over the weekend and the outpatient clinic is not open on the weekend. In the past when this has happened we've been able to come to the inpatient ward daily, however, this time the ward is probably going to be full: no bed=no treatment. So to make sure Max can get his chemo everyday with no delay he has to stay for five days in the ward. I would like to point out that Max is very happy with this situation. Inpatient kids get playroom access!

We could have waited until next week to start chemo, but then we'd be dealing with the uncertainty that his blood counts might drop again... further delaying chemo.

No Chemo Today

UGH! I thought this would be the case today...

Max's blood counts didn't recover enough to start chemo today. His platelets are still low (even after the transfusion last week) and his ANC (combined blood count stuff) was low also. We're going to give him one GCSF shot tonight to boost his white cells and see if that doesn't lift the ANC. The platelets are on their way up so we'll just cross our fingers that they increase enough to get started on Thursday.


On the bright side, look at Max on Sunday night. Eating crab, smiling. So while the news is sometimes grim-sounding, the reality is that Max has an amazing spirit!

Week of Feb 5 and the Week Ahead...

This week Max visited the clinic on Tuesday for a much need platelet transfusion. When your platelets get low you bruise really easily. His every night shot in the leg which is as gentle as a shot can be and normally is invisible, looked like I had shot him in both thighs with an elephant tranquilizer.

He'll have his CBCs drawn Friday. I don't expect he needs anything, so we'll get him right back to school for the rest of the day. Of course I'm hoping his counts are really good and don't drop because...

Next week, Feb 12-16, Max starts his 5th round of chemo and we need his blood counts to be A-OK in order for that to happen. (Yeah, I feel like we were just there last week, too!)

Oh no! Is Max going to miss his school Valentine's Day party. No... I already spoke with his oncologist who is sensitive to the kids' needs. He said we could hydrate in clinic before the party then head back down for chemo after. It'll make it a late day at the clinic - but well worth it. And Max did such a nice job writing names on all his cards and making his groovy-animal print box that he would be heart-broken if he missed the fun. Look for pictures of the party on Max's site next week!

Nifurtimox Update

Max has been taking the nifurtimox now for about 8 weeks; started Dec 11, 2006. I think he was the second kid on trial. Dose level: ?. It's not a blind study, but the first phase includes increasing dosage every 3-5 patients or something. Max is on the lowest dose which I think is 120 (that's what the pill says on it). He's had two chemo rounds during that time (4 total since he recurred). We have not noticed any side effects from the nifurt and his weekly nuerological examines are fine. He has and mri, mibg and bone marrow aspiration before each chemo for study purposes. Max has also just finished 12 days of radiation.

So far, the scans haven't been able to tell us anything undeniably positive except that the cancer is not growing. They're being done so frequently and at times that are not normally associated with the standard protocol, that the doctors aren't sure how to interpret the data that they're getting (there's nothing to compare it to). The bone marrow stain has been negative the last two times which is great. The mibg doesn't show any change. The mri shows all kinds of activity up and down Max's spine, however, it could be showing cells exploding not cell growth.

Max can't be on any thing else while on the trial. As soon as the trial is over (March) were adding Vit C, Calcium + Vit D, possibly bisphosphonate, and we're looking into a couple other things that John London & Neil Hutcinson just mentioned on acor (artemisinin, calcium butyrate).

From what I understand, the nifurtimox trial runs with topotecan/cytoxin chemo drugs. That's the beauty of this trial - Dr. Sholler is trying to find new means of helping our kids without asking us to stop using methods already in effect that have been proven to do something (hence the topo/cytox + nifurtimox).

Dr. Sholler is really trying to help us help our kids. She's in the right mind set, looking at the here and now, knowing that this is a very aggressive and elusive cancer. She's knows we can't ignore the obvious treatments like chemo just to try a new drug for some study data that may be useful 20 years from now.

My husband and I will be at the NB conference in VT in March. We hope to meet a lot of other NB parents and specialists there as well as at the conference in Chicago this summer.

New Week, same stuff

He had a clinic appt Monday morning for CBCs. His red blood cells were low, so he stayed for refill (transfusion). We were prepared to stay and had lots to do including gluing a wooden tank together, playing battleship, and laying around watching TV. When Max's reds are low so is his energy level. We'll that all changed once the transfusion was complete. That kid came alive, I tell you. He did a "happy dance" and song about having his port de-accessed. He talked all the way home in the car and continued to talk (non-stop, I kid you not) until he went to bed that night... 5 hours. You couldn't shut him up. He even joked around about taking his medicine and getting his shot. (If you recall, Max has to receive 1 shot in the leg each night for 10 nights following chemo to boost his white cells.) The boy was on fire. What a hoot!

Tuesday morning he had his last radiation appointment! Hooray. Hopefully it did it's job.

He spent the rest of Tuesday at school and is there again today - for the whole day! He's so happy to be there.

Chemo Round IV

Max did get to start his 4th chemo treatment on Monday. His platelets more than recovered from the previous week and he was off to a great Monday start. Also received the results for his bone marrow biopsy from last week - no disease in the marrow. Love that news.

The days are definately long this week: stopping in La Jolla for radiation first, then heading down to Childrens for chemo. Somehow we've managed to get out of there before 5:00 each day. (Much thanks to all the nurses! Those gals rock.)

Max had two fun visitors this week: his very own kindergarten teacher, Ms. Weitz, has stopped by twice to tutor Max in some of the school work he has missed out on this week! The poster in the background was made by all his classmates.And, a hometown hero here in San Diego: Trevor Hoffman (famous closing pitcher for the San Diego Padres). Ol' Trev stopped by with a few friends to drop off autographed baseball caps to Max and his buddy, Sam. Ok... he stopped and talked to all the other kids, too!

Max is feeling good this week. He's a little tired. I'm sure that can be contributed to several things: lack of activity, radiation, chemotherapy, boredom. His attitude is great, however, and he's been a pleasure to hang out with everyday - as usual.

Chemo #4 comin' up...

Max is scheduled to start his fourth round of chemo tomorrow (Monday, January 22).

He'll start his day with an 8:15am radiation treatment at the UCSD Cancer Center, followed immediately with a CBC panel (blood counts) at Childrens. Provided his blood counts are a-okay (which is a big question this time), he'll get hooked up to the drugs and start his next five-day-whirl-wind-tour-of-chemo. His platelets were low this past week so we're crossing our fingers that they've recovered enough to start chemo tomorrow. If his counts are low we'll try again on Thursday.

New Scan Results & Radiation Report

Radiation
As per Wonderboy usual, Max is responding with no obvious side effects to this radiation treatments. He's halfway through the treatment with 6 appointments to go. When his tech's come out to get him, he marches right in by himself and is back out in less than ten minutes (which includes taking his shirts off, getting set-up on the table and then redressing when the radiation is finished). I did start giving him zophran (anti-nausea med) starting Thursday. His appetite seemed to be dipping a little following the radiation... and that's about the last thing he needs!

Megace
The Megace (appetite enhancer) seems to be working already. He's certainly not hungry all the time, however, he is saying, "When's dinner gonna be ready? I'm really hungry!" What music to our ears. Of course, then I have to make something he'll actually eat. Currently, boxed Mac & Cheese and Cup O' Noodles are tops on his list; bottom on my list for any nutritional value and protein content. I'll find something that makes us all happy eventually.

MRI & MIBG Scans
Max had an MRI and MIBG this week. His MIBG scan looks exactly the same as the previous - no increase in uptake but no decrease either. His MRI shows more enhancement than the last (which is not what we want to see), however, when comparing the two scans if there were more disease the MIBG would show more uptake. It's very complex and hard to explain, but we're having a leap of faith that what we're seeing on the MRI are cells being killed, not cells growing. (Scans are not typically taken at this point in the protocol, so the doctors are trying to interpret data that they don't usually look at. Max is having all these extra scans for the nifurtimox study.) At some point this conflict in scan results will need to be resolved: all scans need to show a decrease in disease.

VMA & HVA Levels
This is something we haven't mentioned before but plays an important role in tracking NB. These are catecholamines that are traced in the urine and elevate in children with NB. On his chart the levels started going up dramatically about the time he recurred and was diagnosed. These levels are steadily going down, which also supports the belief that his disease is decreasing.

OK, if you REALLY want to help...

Andy & I know you all love Max and want to do something for him, and because of that Max is receiving lots of great stuff from everyone - too much stuff. We're having some issues on the home front due to it. wink ;-)

We thank you for all your thoughtfulness and caring. We know you all want to help Max in some way, however, the gifts, the money to buy a book for himself, the new clothes... it's all a little overwhelming for a five year old boy! (Stop it, and I mean it.) (I'm not kidding.) (Stop looking at me that way!)

"Gee," you say, "I really want to do something for this great little kid. I really want to help!"

Well, we say you still can. You can do something that could stop neuroblastoma in it's tracks and help Max get through this battle and into adulthood. Please make a donation in honor of Max to the Penelope and Sam Fund. We have chosen to support this fund because the research and trials being done through it are multi-agent studies: they utilize drugs that have been shown to work against NB while adding new agents to the mix to hopefully get better results.

The Penelope and Sam Fund was set up by the parents of Penelope London and Sam Hutchison (Max's Nintendo buddy) to fund new treatments for relapsed neuroblastoma. The research is being headed up by the amazing Dr. Giselle Sholler at The University of Vermont. The fund has already made possible a new clinical trial for Nifurtimox (which Max is on right now). We are deeply grateful for any and all donations. Please know that no donation you can make is too little. 100% of your money will go to researching (not a salary) and beating this nasty disease. All donations are tax deductible. Thank you from Max and all kids fighting nb.

You may make your check payable to:
Penelope and Sam Fund
c/o Rick Blount, Assistant Dean for Development & Alumni Relations
The University of Vermont College of Medicine
E-100 Given Building, 89 Beaumont Ave.
Burlington, VT 05405
Voice: 802-656-4405/ Fax: 802-656-5788
Rick.Blount@uvm.edu

Lots Going On...

At Max's clinic appointment on Monday 1/8 we spoke with his oncologist about school and when we should keep him at home due to low blood counts (ANC). (If Max gets an infection that results in a fever he will end up in the hospital getting IV antibiotics for 10 days. When his ANC drops this is a distinct possibility.) The doctors' feeling was that even when Max's ANC is low it is much more likely that if he were to get an infection it would be caused by a virus already in his body and not by a runny-nosed friend at school. So this great news... Max can go to school much more often than we were expecting. This is such a great relief for us - and for Max even if he doesn't know it - that he will be able to keep up his social activities with his friends. Along with medical health, mental health is so important!

We started Max on an appetite enhancer, Megace. You'll see in the radiation photo below how thin the boy is! He weighs a whole 37lbs. It will take 2-4 weeks before we start to see a change in his appetite. We can't wait.

We're also looking at adding something called a bisphosphonate to his treatment cocktail. It's a bone strengthener used commonly in cancer treatments and osteoporosis. Since the cancer he has right now is in his bone (and he's receiving radiation to his bone) we thought this would be a good addition. Max may need to wait until the Nifurtimox trial is completed before adding this, because there is also a trial on this drug testing the theory that it may make bones stronger which then makes it more difficult for cancer cells to attack said bone (this is my layman's explanation - don't quote me!). Whether that's true or not we do not know, however, couldn't hurt, could it!

Here's yet another photo of Wonderboy (he's smiling in there!). Max just started radiation treatments at the Moores UCSD Cancer Center in La Jolla. He'll be receiving 12 treatments, 12 days in a row(excluding weekends!). The making of this mask was quite possibly one of the most amazing feats Max has pulled off. It starts off as a flat screen. The tech warmed it up in water then stretched it down over Max's face and head and held it there for 15-20 minutes while it cooled and hardened. Max just laid there and did it. No biggy. Of course, I just carried on like this was an everyday event (all the while I thought my eyes might pop out of my head wondering when he was going to reach the end of his rope). Now Max wears his mask everyday for his radiation treatment for about 5 minutes. He lays on the table, puts on the mask and the "guys" get the sharpie marks drawn on his body lined up with the lasers. Then everyone has to leave the room and Max receives the radiation in there all by himself. I even have to wait in the lobby! He comes out all dressed and smiling. Unbelieveable!

Next week he's scheduled for an MRI, bone marrow aspiration, and MIBG scan in addition to radiation. His next chemo is scheduled for 1/22 pending blood counts.

Clarification

Let me clarify my early morning post below. Actually, the scan results from Vermont were mixed. The MRI results showed lesions at C2, T1-5, T7, T11 and L1 vertebrae. This is - characterized by Max's SD onc - as stable. However, Max will be having his whole spine irradiated starting on this Thursday and will go every weekday for 12 days.

Some progress...

We're back from Vermont. We got back to San Diego on Sunday, around noon, after 6 days away from home. Max was very, very happy to be home, see Hannah and Nic (and Mommy too of course!)... and play his Star Wars video game, 'natch.

Tuesday (1/2), our first day at the hospital, you'll recall that Max had an MRI and bone-marrow aspiration/biopsy. Well we just heard from Dr. Sholler, Max's onc in Vermont and the results of the bone marrow were negative! So we're happy to have some early indication of progress after 3 courses of chemo. Don't know if the Nifurtimox is helping or not and quite honestly am not going to worry about it too much... just like to see progress.

Below, some additional pics from Vermont. It was quite warm during the rest of our stay but Max still had a good time, especially at the ECHO center a few blocks away from the RMH where we stayed.

Vermont - round 2

Arrived in beautiful, snow-covered Burlington Sunday night - New Year's Eve - after a long day in the air. United managed to lose our luggage, leaving it at Dulles where we had transferred from the relative comfort of a UA 757 in Econo Plus to a Embraer regional jet.


Aboard the Embraer United regional jet.

United must've decided the little jet was too heavy as it was obvious why our "big" suitcase was left behind while our smaller two made it through. Of course, the big suitcase held Max's and my clothes so we were without a change of clothes the first night.... and of course Max wet himself Sunday night and I hadn't prepared for that, so he spend Monday morning - New Year's Day - pantless in our room. I have a picture of him playing on my computer that I would love to post as only another parent would appreciate it, but alas I'd probably have the San Diego Police child p*rn team at my house waiting for my return.





















Max - in a "clean" photo of the situation I mentioned above.

We had Monday off but didn't do a whole lot... Max got a cool book on dragons at the downtown Burlington Barnes & Noble, one of the few stores open on New Year's. And so we spend most of the day fooling around the house, reading and generally doing “nothing”, which was nice, especially in preparation for today, Tuesday our first official day in clinic.


In front of RMH Burlington.

Today started off pretty good. Max was scheduled for an MRI and bone marrow aspiration, so he couldn’t eat or drink anything after 6am. We got the beautiful UVM medical center at around 7:30, early for our 8:00 start time but hopeful we could get going quickly. Didn't happen though we did start soon after 8am, only to find that our 9am MRI appt was bumped to 11am for some reason. So, Max played video games (they have a cool GameCube cart) and I tried to get organized and do some NB-parent work.


Hooked up for a neurological scan.

Max went in for his MRI around 11:15 and came out around 2:00 after full-body scan plus a bone-marrow aspiration + biopsy procedure on his pelvis. Nevertheless he recovered from the anethesia quite quickly and rose to eat his favorite post-op treat, popsicles. He was still so groggy while eating the popsicles he was having trouble getting them into his mouth, which was both quite funny and sad as the same time. NB parents reading this realize this funny/sad dichotomy happens quite often, and its part of the challenge to embrace both the good and the bad, sometimes at the same time, as it happens.





















Eating graham crackers and popsicles while recovering from anesthesia.

The rest of the day was pretty uneventful. The staff at Children's Specialty Center (the outpatient infustion clinic in other words) worked very hard and effectively to get Max out at the scheduled time of 4pm. Tonight, Max ate oranges for dinner. His first time eating an orange and he ate four of them tonight! Actually they're those clementine tangerines that are so yummy and easy to peel. Nevertheless, he's hooked which is great for us and for him!


Finally, after MRI and bone marrow aspiration, chemo and Super Mario Cart Racing on the GameCube.

Tomorrow will be an easier day. I'm going to make Max a giant batch of pancakes for breakfast, as some people here say Vermont has good syrup, whatever that means... I thought Aunt Jemima was from the South...

Gone to Vermont!

Max, Daddy & Papa John are on their way to Vermont for the second part of Max's nifurtimox trial. They'll have tomorrow (Jan 1) to play in the snow, and then it's off to the hospital for five days of chemo. Outpatient, of course. Max will also have an MRI and bone marrow aspiration for the study while there. They'll be staying at the Ronald McDonald House again which is so great for Max. Very homey.

Kid Friendly Site for Max's Friends

Hey - we've made a kid friendly site for all of Max's friends to see what Max is up to when he's not at school. It'll be lots of photos and a little narration. Enjoy!
http://maxmikulak.blogspot.com/

Some pics from Christmas

Saturday, December 23 at the park.



Christmas eve at the cousin's house in Alpine, 30 mi east of San Diego.



Max was feeling a little sick on Christmas morning and so hence the sheets over the couch... Max asked Santa for a Star Wars laser gun and the big red guy delivered.



Max at Powerhouse park/beach on Christmas Day after playing in the sand with sister Hannah - one of the best therapies in the world as far as we're concerned.

Update with last scans

A little different post here than normal, notes below from a call last week with Max's oncologist which should prove informative to some y'all. These notes are regarding current scans and treatment plans that max is currently on.

12/8/06 MRI
a. Spine appears to be lit from top to bottom in addition to the two original localized spots. (T11 and L2).
b. Second cycle of chemo may not have taken effect at time of this scan. Normally do not look this early in protocol at scans. Slight possibility that cells are “exploding” and then look enhanced.
c. With new MRI showing less diffused, have to interpret as positive for cancer.
d. Raises question “can there be more elsewhere?” MIBG scan ordered to see what shows up.

12/8/06 Bone Marrow Aspiration
a. Shows positive for cancer cells at about same measure as previous aspiration taken 10/20/06. Small focus of cells there each time.

Radiation
a. Still using low dose 20 grays for radiation on entire spine.

Bone scan
a. Results from 12/21 bone scan show no difference from previous.

MIBG Scan
a. MIBG scan scheduled for 12/28/06

Nifurtimox Trial
a. Length: trial will last through three chemotherapies. After which Max is eligible to receive the drug for as long as necessary.

MRI

Just a quick pic of Max getting his latest MRI.

Home from Vermont

Max, Nic, Aunt Randee and I arrived back in sunny(?) San Diego Saturday morning 12/16.

I didn’t mention before that my sister, Randee, joined us on the trip to babysit Nic while Max & I were at the hospital. They had a great time bonding and Nic is now completely spoiled from taking 2-3 stroller rides daily. The Ronald McDonald House was only one block from the town center and they explored it thoroughly. Max and I were able to join Nic and Randee Wednesday on their exploits. We took to the 45 degree, rainy streets and walked about one mile to Echo http://www.echovermont.org/ a science center and aquarium centered on Lake Champlain. The boys had a hoot looking at all the fish and turtles and playing with all the exhibits. We followed that up with a late lunch at Ben & Jerry’s (yes, they serve more than ice cream).

Thursday found Max back in the hospital for Day 2 of the trial. Same routine as Monday: take a pill, have your blood drawn all day between Nintendo games. Don’t get me wrong! We did do some school work, read a few books, saw Santa touch down outside in a helicopter, had a one-on-one meeting with the fat guy in the red suit, yadda, yadda, yadda. Typical hospital stuff.

Friday we took to the roads in hopes of locating snow. No luck. We did, however, locate the Ben & Jerry’s Factory! http://www.benjerry.com/ Huh? How ever did we find that? We took the tour, had a special sample they were making that day, bought some stocking stuffers… the usual.

And now we’re home. Thank goodness. It was a long way to go to get a bottle of pills and get blood work done. Nonetheless, we’re hoping for the best from the Nifurtimax. It’ll be more than worth the 16 hours of travel when it proves itself.

Greetings from the Northeast

I would say greetings from the great white north, however, there is no snow her in Vermont! We arrived late Sunday night to a 1-2 inches of snow blanketing the ground, but the weather was warm enough the next day that it all melted away.

Max spent the entire day, Monday, in the hospital for the start of the study for Nifurtimox. He took his first pill in the AM then had his blood drawn every hour to track the toxicity levels for the rest of day practically. Max is now taking the nifurtimox three times daily. He's a champ and swallows the pills with a little apple juice, then he gets a Hershey's Kiss. Day one involved lots of bribing with Hot Wheels and I began to think this was going to cost a fortune in diecast cars. However, Max pulled yet another rabbit out of a hat and showed endurance and ability beyond his years! Chocolate's better any day of the week anyway!

Tuesday we had a morning appt for Max to receive his first blood transfusion this go-around. His red blood cells had dropped from the last chemo and he was getting a little pale, tired and irritable. This afternoon he was nice and rosy-cheeked and in good spirits.

Tomorrow we have the day off. Max plans on doing a little shopping (for himself) and getting some vitamin sunshine. It was clear and beautiful today, so we're hoping for more of the same tomorrow. Thursday will find Max back in the hospital for the day for the study. It's not such a bad deal as Max has found the Nintendo and fallen in love with Super Mario Racing something or the other. It certainly makes the day go much faster for him. Friday we have the day off again -- guess we could've flown home a day earlier! Perhaps we'll rent a car and take to the mountains for a little sledding! We brought our snowsuits and boots and can't wait to try them out.

Oh! I don't want to forget to mention how awesome the Ronald McDonald House is here. http://www.rmh-vermont.org/ It is so wonderful. Each night someone from the community has brought dinner for the guests here, Last night we had pasta with meatballs and salad. Tonight a girl scout troop made beef stew, buns, and decorated Christmas cookies. There is a constant supply of baked goods and the refrigerator is always full of food. The volunteers are so friendly -- and so are the other families who are staying here. You just wouldn't believe it.

We'll post more later this week and photos when we get home.

Nifurtimax clinical trial

Max left today (Sunday 12/10) towards Burlington, Vermont for the start of a P1 clinical trial that offers the drug Nifurtimax, an antibody drug, that has shown promise in some VERY preliminary applications on children with recuurent neuroblasoma.

More posts soon as Max went in for his first set of scans (CT, bone, MRI) this week.

Hooliganism?

Just had to share this picture of Max (left) and his buddy Sam (also with neuroblastoma) in clinic yesterday. They look like some soccer (sorry, football) hooligans about to make some trouble after an Arsenal-Manchester game at Emirates stadium. Instead, they're just some nice boys playing Nintendo (phew!).

Hair loss

Thanksgiving day after first course of chemotherapy.

December 2 during second course of chemotherapy.
We had Max's hair cut after Thanksgiving and before going back to school to try to lessen the shock to his friends of the hair loss we knew was coming, and also so his the hair falling out was only 3 inches long instead of 10.

December 3 after realizing that hair was coming out all over.

Max was actually excited to get his hair cut off. He like it and thinks it feels like a porcupine or armadillo... smooth one way, rough the other!

Chemo #2 Started

Be flexible. That's what we learned last time Max was being treated for cancer. Friday morning 7:30am we were able to put our flexibility into high gear. Max's doctor wanted Max to start his chemo Friday in order to meet some guidelines for the Vermont Study (see nov 22 post).

Needlesstosay, it was a whirlwind of a morning! Hannah went to school with our neighbors, Papa John drove down to stay with Nic all day, and Max and I were at the clinic by 9:15 -- we even packed toys, games, snacks, and lunch! It ended up being a 10 hour day. Blood counts and doctor check have to be done before chemo can be started the first day. And the clinic treatment room was filled with kids getting chemo, blood, etc. I've never seen the nurses so busy.

Max and I were playing cards at one point during the day and he had me shuffle the cards so they blew air on his head. When I pulled the deck away I noticed a few strands of hair had come with. Looks like his hair loss has begun. He doesn't seem in the least worried about it. He's so amazing.

Andy & Max are at the hospital today. Max was hooked up for fluids at 10am, but the chemo wasn't ready to be hung until 12:45. They were able to leave at 4:45. "I'm outta here," said Max. And they were!

It's really cool to be able to come home each day after chemo, eat dinner together, and sleep in our own beds. Then start the new day together as a family, too.

Max's second round of chemo will end on Tuesday. Pending his blood counts he may be able to go to school...? We'll see. He's also scheduled for a CTscan, MRI and bonescan which will make that even harder to achieve.

Max's Schedule

Wow. We just took a look at the treatment schedule last night for Max and how it's going to affect his school time. Sheesh. Here's a preview:

• Week of Nov 27: hopefully only missing school Monday morning for clinic blood counts.
• Week of Dec 4-8: Missing school to have his 2nd round of chemo.
• Week of Dec 11-15: Missing school to participate in study in Vermont (see previous post).
• Week of Dec 18-21: If blood counts are good he'll be in school (we're crossing our fingers!).
• 12/22 - 12/31 is Christmas Holiday. Max will have a few clinic visits to check his blood counts.
• Jan 1-5: Missing school to participate in second part of study in Vermont and recieve his 3rd chemo.

Max's spirits are high and he had a great Thanksgiving playing with Hannah and his cousins Alaina and Patrick for 9 hours straight. He is having pain in his back and legs which is causing some crankiness. We phoned the doctor today for some codiene to help him cope.

It's really hard this time to see him in any pain as we understand much better what's happening to his little body. I almost can't wait for the next chemo round to start in hopes that it will start killing off the cancer cells faster and relieve some of his pain.

Thank you everyone for your outpouring of love and offers to help us in way possible. Right now everything is as under-control as it can be. (I'm still changing diapers; Max and Hannah still fight; Andy goes to work everyday; etc!) When Max goes in for his next chemo I may be calling you for afterschool playdates for Hannah. Outpatient chemo apparently takes 8-9 hours each day -- but at least we get to come home each night!

I'd also like everyone to know that we are not too busy to take phone calls, we can take your kids to school with us in the AM if you need a favor, and playdates are welcome as long as Max's blood counts are up. We need to keep our daily life as normal as possible for ourselves and especially for our kids. Yes, we are dealing with a crisis. But you can help us get through this by staying close. Isolation is the worst thing.



Cousins Alaina and Patrick flank Hannah and Max on Thanksgiving day at our house.



Max and Patrick in Del Mar waiting for trains to come by.



Cousin Alaina with Max and Hannah's favorite playtoy, little brother Nicolas.

Max going on clinical trial

Max is going on a phase 1 clinical trial (for an antibiotic called nifurtimox) as part of his therapy now that the neurblastoma has recurred. There isn't much web data on this trial - that I can find anyway - as its just started as of Nov. 20. Melissa spoke with the principal investigator on the trial this morning and we're scheduled to start Dec. 11. The trial takes place at University of Vermont and Max has to be there for 5 days starting the 11th and 5 more days around Jan 1. Below is a post to the NBLAST list from a fellow NB-parent Neil Hutchinson who also lives in San Diego and whose son Sam has had a rough time with his neuroblastoma. We'll post more as we know more. Obviously this will be tough as Melissa and Max will have to go to Vermont for 7 days (I hear they have pleasant winters just like San Diego) and I'll keep things going at home. Perhaps Nic will go with Melissa and Max too and I'll stay in SD with Hannah and keep her on-schedule and in school.

Neil Hutchinson wrote:
"I wanted to post an update on the soon-to-be-open
nifurtimox/topo/cytoxan trial. The goal is to have
it open 11/20 in Burlington , VT and soon thereafter
in St. Louis at St. Louis University Med Center
(don't quote me on the name though). I think this is
good news for the list since it means travel
distances would be shorter. The way the trial works
is that the first 3 weeks are nifurtimox only and
starting with week 4, they add the topo/cytoxan. So
you do need to be in St. Louis or Burlington for
weeks 1 and 4 so they can observe any toxicities and
do pharmacokinetics (they're trying to measure how
much nifurtimox gets into the blood serum). Once you
have met the week 1 and week 4 milestones, you can
continue treatment at your home hospital as long as
your local oncologist agrees to communicate with Dr.
Sholller, who as the Principal Investigator for the
trial, will need to be aware of counts, scans,
toxicities being seen etc."

Photos from first treatment

Max's new port. Better than the Hickman catheter (tubes) he had sticking out of his body last time.






mmmmmm.... french toast... more like churros though.






Day 1 of 4 1/2.






Artwork by Max & Co.

Max home from first treatment

Just a quick post to let everyone know that Max came home Sunday (19th) night from his first chemo treatment. He did exceptionally well, as per usual, and tolerated all the attention, pokes, prods, squeezes, etc. with no fear and a smile on his face. His favorite part is (surprise) the playroom. Some good pics will be posted in the next few days. Thanks to everyone for their thoughts, cards, etc. Hannah spoke in front of her 2nd grade class to explain to them what was happening to Max, and the whole class created what must be the world's biggest get-well card. Also, Max's Kindergarden class all produced their own get-well cards which of course lifted Max's spirits greatly.

Max headed to hospital to begin treatment

Since it's Fall, it must be time for bad news from the Mikulak household. 2 years and 17 days ago Max was admitted to Rady Children's Hospital here in San Diego to begin treatment for stage IV, high-risk neuroblastoma. As you all know, he responded to treatment very well, and finished his protocol in close to record time, with almost no short-term side effects and only one major long-term side-effect which was some moderate-to-severe hearing loss in both ears forcing him to wear hearing aids. In relative context, we got off easy, we thought. As it turns out, the chemo, autologous bone-marrow transplant (stem-cell rescue as its called now), radiation, and retinoic acid didn't quite finish the job. So, the same cancer has come back - albeit in lesser form - but still to the point where Max will be receiving fairly moderate chemotherapy.

A key difference between this time and last time, is that this time we're venturing into the unknown, relatively speaking. That is, with Max's prior treatment protocol, there was much known about how to treat a newly diagnosed instance of the disease. However, if and when the cancer recurs, less is know about which treatment protocol produces the best outcome. So, we're entering this treatment with more-or-less a hypothesize-administer-measure-adjust framework, where we have a lot of options to consider as we determine what's working and what isn't.

Max is checking in tomorrow at 1:30P at Children's, and in the afternoon will receive a bone-marrow aspiration (1/8" thick needle inserted into the pelvic bone to remove a core of bone marrow) and will receive his new "port", through which blood will be drawn and the chemo drugs administered. As some of you will recall, last time Max had what's called a Hickman catheter, which entered his body just below his collarbone and which left about 10" of plastic tubing protruding from him. This required much maintenance and caution, since if the entry point got wet, or if the tubes got pulled, that would have been no good. With the new port, everything is subcutaneous and Max will simply have to endure getting slightly stuck with a needle to access the port. We'll see how that goes, but to-date he's been a tough kid when it comes to pain and so we're hoping this works for him.

CT No Help

Well, the CTscan Max had of his ribs was of no assistance to his surgeon. Didn't show anything that would tell her exactly what she'd be looking for, so she will not do the biopsy.

Max's oncologist is still very wary about the back surgery biopsy, so he is suggesting that Max have another needle biopsy of two spots on his spine. This is a fairly simple procedure that leaves him in very little pain. Last time he didn't even need tylenol at home. He'll have this procedure this week.

We're crossing our fingers that one of these show something or give us some clue as to what's going on in Max's little body. Should nothing come of these, Andy & I will have a consult with the back surgeon to find out just what Max will have to go through should the back surgery be necessary. We'll let you know...

3-Month Check-up

Since this blog is a little bit of a diary for us to look back on, I wanted to expand on Andy's latest post and review what has happened since July 2006.

Max went in for his regular three month check-up the week of July 17 (MRI & bonescan). Both scans showed that a spot had appeared on his spine somewhere around T11 (if you know what that is). His oncologist ordered a biopsy on the site. Max underwent a CTscan guided needle biopsy of the site, however, pathology came back negative for cancer. In this case, negative means inconclusive, because if it's not cancer then what is it that's showing up on the scans?

The best course of action for now was to schedule Max for an MRI every month to watch the spot and see if it goes away (hooray), or grows (bad). Max had an MRI in August and September and the spot didn't grow, but it also didn't go away. His next 3-month check-up was October. At this point, the oncologist said that if the spot is still on his spine we will need to schedule an open biopsy of the site to get a better tissue sample. This was going to be very invasive, as the spot is between two vertebrae.

So, Max went in for his three month check up on October 20. The original spot was still on his spine, unchanged. And now we have a new spot on a rib. Great. We're now waiting for a CTscan to be taken for Max's surgeon to get a better look at the rib so she can do the biopsy. We should be going in for all of this Halloween week.

As you can imagine Andy & I are pretty stressed out, but doing our best to keep it normal around the house for the kids. Max is feeling well, going to school, and having fun in general. Next week Max's class is going on their very first school bus field trip to an animal center and he's going to be Superman for Halloween!

Thank you for your prayers and thoughts.

Two years on Thursday 10/26... and some bad news.

It was two years ago this Thursday, October 26 that Max was checked into Children's hospital and subsequently diagnosed with neuroblastoma. Unfortunately, today Max had a bone scan and we learned that he has a second "spot" on one of his ribs, which warrants a surgical biopsy be done immediately. He is likely to have the surgey early next week, Halloween day or the next most likely. We'll post an update as soon as we know something, good or bad. In the meantime, here's a picture of Max in kindergarden at "daddy day" earlier this month.