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.