mhochster

One year off treatment!

Sun, 15 Mar 2009 04:49:08 GMT

That's all.

Last day of bactrim

Mon, 15 Sep 2008 22:10:42 GMT

Yesterday was Gabriela's last dose of bactrim. No more leukemia-related medicine!

bye bye brovi

Mon, 24 Mar 2008 21:27:53 GMT

Gabriela's Broviac came out today (not the 28th, as I said in my previous post). Everything went very well, and she hardly seems to be in any discomfort at all. This is really starting to feel "done."

almost done

Mon, 17 Mar 2008 12:33:27 GMT

Ellie had her last chemo on Friday 3/14. Her last spinal (not for chemo, just to take measurements) is tomorrow (3/18), and the Broviac comes out on 3/28. Exciting!

ANC 1241

Tue, 30 Oct 2007 21:52:56 GMT

Gabriela had a clinic appointment today after being back on meds for a bit. Her ANC is still good.

ANC 800

Wed, 24 Oct 2007 13:43:42 GMT

Ellie is back in school and back on meds now.

counts up

Thu, 18 Oct 2007 17:21:45 GMT

Ellie's ANC is 420 according to today's labs, so still no school, but at least things are moving in the right direction.

still low

Thu, 11 Oct 2007 20:05:15 GMT

Gabriela has not bounced back yet. Her ANC was lower today: 220. Nothing to do about this except wait.

low counts

Tue, 09 Oct 2007 00:15:57 GMT

Ellie's blood was drawn today in preparation for going to the dentist today, and it turned out her counts are really low (300s). So we are stopping meds and waiting for them to bounce back.

headache's over

Mon, 09 Oct 2006 15:11:08 GMT

Gabriela's headache finally went away yesterday. She's feeling fine now.

Bad spinal

Fri, 06 Oct 2006 17:49:10 GMT

Ellie has been having headaches since her spinal on Tuesday. While this is a known side effect of spinal taps, it hasn't happened to Gabriela before. The spinal itself went less smoothly than usual; they had to poke her four times instead of the usual one. Probably that's why she's having the headaches. Caffeine is supposed to help, so we've been giving her Coke, which she likes. A lot. If the headaches don't get better there is some procedure they can do that supposedly will cure them, but this involves another spinal (and going under again) so we are going to try to avoid it.

Thu, 14 Sep 2006 16:23:03 GMT

A few things going on this week. Ben turned 6 and just started first grade! Gabriela has also gone back to school and is now attending Ben's old preschool, Benvenue. She was a little skeptical for the first couple of days. When Lani asked her how the first day went, she said "Good. I quit. I hate it." (This may have something to do with the fact that the first week of school coincided with her weekly pulse of Decadron). That soon changed to "I like the things at the school, I just don't like the school," which gave me hope. Now it's been a week and she is pretty well acclimated. She still misses her day care, but she seems happy with the new routine. Her health has been fine. Ellie usually has plenty of energy and rarely seems sick (except for one recent mysterious barfing incident, which must have been a mild flu). Her hair has definitely crossed over the line from bald to very very short. I don't think people notice it much. Occasionally an unobservant person will mistake her for a boy, in spite of the lip gloss, pink skirt and shoes and glitter on her scalp.

No news is good news

Tue, 15 Aug 2006 18:47:33 GMT

Gabriela has been tolerating her medicine really well, and life is going along normally. I probably won't post here much unless something is going on. So if you don't hear from me, be happy.

Big ANC

Tue, 25 Jul 2006 23:14:50 GMT

Gabriela's ANC is 2800, even on the full dose of 6MP and off decadron for a while. Woohoo!

maintenance started today

Tue, 11 Jul 2006 21:57:32 GMT

Break's over. Gabriela's ANC did come down quite a bit from the 2000+ I reported before, but it stayed high enough to move on to the maintenance phase. There are no surprises now: the chemo regimen is the same as it was in interim maintenance: 6MP daily, methotrexate weekly, 5-day pulse of decadron once a month, vincristine once a month, and spinal methotrexate once every three months. The first spinal was today, and it went fine.

Ellie's hair will grow back now, and she should not be neutropenic too often (though her counts will probably bounce around initially as the dose of 6mp is calibrated). She is on track to go to pre-school in September. Maintenance is the home stretch, but it's a long one. Our estimated date to complete treatment is March 14, 2008. Mark your calendars.

through the tunnel

Thu, 06 Jul 2006 04:15:40 GMT

DI is finished, and now we're on break from all chemo, waiting for Ellie to bounce back. For the most part, she has. Her ANC is way up there now, over 2000. She's still quite anemic, but you wouldn't know, except for the occasional complaint of being cold. And I'm not sure, but I think her hair is starting to grow back. The little band of fuzz in the front of her head is thickening. Maybe.

much better

Mon, 26 Jun 2006 20:08:24 GMT

The mouth sore situation has improved a lot. Gabriela doesn't complain about it at all except when she's eating or brushing teeth, and even then it seems tolerable. She needs to eat slowly and with small bites, but she is eating ok now.

Her counts are quite low (ANC around 300 at last check), which is too bad because Lani and I both have colds. Today is the last day of DI. Gabriela gets a long break from chemo starting tomorrow, but she is expected to be neutropenic for a few weeks. After she recovers, we start the next stage: Maintenance.

better

Fri, 23 Jun 2006 04:26:07 GMT

Ellie was better today, thanks to tylenol with codeine. The sores still hurt, but mainly while eating. She was peppy most of the day. No nap, and we went to see Over The Hedge.

miserable

Thu, 22 Jun 2006 18:20:14 GMT

Yesterday Gabriela was pretty miserable because of mouth sores. When we ran through the long lists of side effects of chemo, I never paid much attention to mouth sores, thinking they would be at worst a minor nuisance. Turns out they are awful: all over the inside of her mouth and very painful. She didn't eat much because of them. We have some medicine: "magic mouthwash" (mylanta + benadryl) which provides temporary relief, and Tylenol with codeine, which relieves the pain but is yet another syrupy concoction that makes Ellie gag. So this part is not fun.

so far so good

Mon, 19 Jun 2006 16:34:45 GMT

Gabriela's counts were surprisingly high at the last check (ANC about 1800). They may have been elevated because she was fighting a slight infection of the Broviac site, but in any case, she has not been neutropenic. Ellie was in a pretty good mood most of the weekend, and we were able to go out and enjoy ourselves. The cytoxan takes about a week to kick in so we may start seeing the effects in the next couple of days. The only real complaint has been a recurring sore in the back of her mouth which interferes with eating somewhat. Four more days of Ara-C and we will be done (at least with administering) the heavy stuff.

chemorama

Thu, 15 Jun 2006 16:30:02 GMT

Tuesday we started off part 2 of delayed intensification. Ellie started off with a spinal (methotrexate). Then, a long clinic visit. Gabriela got two new IV drugs: Ara C, which she will get daily for the next 10 days, and Cytoxan, which was a one-time thing. Cytoaxan can cause bladder damage as a side effect so you need to flush it out very thoroughly. Ellie had IV fluid for about 10 hours, plus lots of drinking. We went home with a portable IV in a backpack, and the backpack followed her around for the rest of the evening. It was without question a long and boring day, but Gabriela kept up her spirits: she worked on new string of courage beads, watched Pinocchio, and as far as I could see was less fidgety than I was.

Ellie has one more new drug, a daily pill called 6TG. On the yuckiness scale, it rates somewhere above 6MP (which apparently improves the taste of applesauce) and below decadron. Rounding out the top of the yuckiness scale is the anti-nausea drug Zofran, which we have been making her take because Ara C supposedly is very nauseating. Unfortunately, Zofran is about the most disgusting thing on planet Earth (to Gabriela) and she barfed it up impressively the first time she took it. I think we have figured out some improved methods of taking it (slow).

I don't see a big difference in Gabriela after all this. Lani says she is a little crabbier, but she still has lots of energy (she skipped her nap yesterday). We are expecting her counts to drop very low in the next couple of weeks, but for now she seems ok.

DI part II starts tomorrow

Mon, 12 Jun 2006 22:25:59 GMT

Gabriela's ANC is over 900 now, so we're on for tomorrow.

Not starting DI part 2 tomorrow

Mon, 05 Jun 2006 22:05:17 GMT

The plan was to start the next phase of DI tomorrow, but Gabriela's ANC is too low (<300), so we are going to have to postpone it.

Ellie on hair loss

Thu, 01 Jun 2006 17:09:25 GMT

Lani trimmed the remainder of Gabriela's hair, so now she is basically bald with just a little bit of feathery fuzz. It looks good, and she says "I love my new hairdo." At first I thought there might be a trace of overcompensation there, but I don't think so now.

The night before last, Ben was staring at the back of Gabriela's head, and said, "ummmm Ellie... you have a big bald spot on the back of your head." She gave him an exasperated you're-a-moron eye-roll and said "I know. That's because of my chemotherapy."
Yesterday, she wisecracked: "you can always find me, just follow the trail of hair."
She rolled an especially large tuft into a ball as a memento. She said her stuffed elephant (also named Ellie) thought it was a gumball.
Today she told Lani she wants to visit her old preschool to show all her friends her new hair.

I think we're all getting used to the new look pretty quickly.

hair

Tue, 30 May 2006 16:25:56 GMT

Most of Gabriela's hair is gone now.

The rational side of me says this is not a major event. We knew it was coming, it doesn't hurt, it's temporary, and Gabriela is not very upset about it. Compared to some of the other recent changes, like not being able to go to school, a daily diet of toxic chemicals mixed with applesauce, having a catheter surgically implanted in her chest, wild swings in body weight, and so on, hair loss is not such a big thing.

The truth is, though, without hair Ellie looks like a cancer patient, and that is hard to take. My line for a long time has been that "you wouldn't even know she's sick, she's just a little tired sometimes." Now there is no question that she is sick, and we can't forget that even for a few moments.

It all fell out pretty quickly over the weekend. We spent a lot of time lint-rollering her hair off of things, which is a little bit fun if you don't think about it too hard. The worst part was the beginning, when big tufts of hair kept coming out in surprising ways and leaving her sort of half-bald. Now it's more symmetrical and feathery. As Gabriela says herself, "my hair is falling out, but I'm still cute!" And it's true.