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


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.

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.



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.