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...