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.
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.
a. Still using low dose 20 grays for radiation on entire spine.
a. Results from 12/21 bone scan show no difference from previous.
a. MIBG scan scheduled for 12/28/06
a. Length: trial will last through three chemotherapies. After which Max is eligible to receive the drug for as long as necessary.
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.
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.
More posts soon as Max went in for his first set of scans (CT, bone, MRI) this week.
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!).
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!
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.
- 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.
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."
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.
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...
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.
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.
Max was fitted with hearing aides just before Christmas. His hearing was affected by the last chemo drug he received prior to his stemcell rescue. The hearing loss was expected; it was just unknown how bad it would be. It ended up being quite significant. He spoke very loud all the time and was unable to hear us most of the time. "What did you say, Daddy?" He confused a lot of the letters in the alphabet like P, D T, C, etc. The hearing aides are great and only amplify the tones that he cannot hear. Digital technology! He adjusted to them in one day and noticed the difference right away. He said, "I can hear myself talking now." He's now able to learn the sounds of the letters and his speech (which wasn't bad even before) is improving markedly. His hearing loss is not temporary and he will wear the aides forever.
Max just finished his last round of the retinoic acid! Hooray. We hated that stuff. Poor boy would have chapped lips from his chin all the way to his nose; most of the time cracked and bleeding, too. It caused him to be very moody and emotional, as well as several other side effects.
Max is scheduled for his third round of follow-up scans this month. He just had the bonescan this week and has his MRI and bone marrow aspiration next week. We'll post the results when we have them.
A few monthes ago Andy noted on the kids growth chart (our bathroom door jam) that Max grew about 4.5 inches from 12/2004 - 12/2005. Good thing he didn't lose any weight while he was in the hospital!