Psalm 34

reminder - new location

2006-11-10T06:18:00.000-08:00

Sam Carrasco's blog is now here: Sam Carrasco's Psalm 34 blog

Sam's new blog location

2006-08-02T02:32:00.000-07:00

AUGUST 2, 2006: Sam's blog has moved again. It's now here:

samueljob.wordpress.com

NEW BLOG - THIS BLOG HAS MOVED - NEW BLOG IS SOMEWHERE ELSE... SEE BELOW

2005-03-13T20:25:00.000-08:00

Friends, Blogger is just too slow and clunky, and I went ahead and moved Sam Carrasco's Psalm 34 blog to a new location. Here it is, below:

http://www.urbanonramps.com/psalm34/

please bookmark it.

For you RSS fans out there, here's the new RSS url for Sam's new blog:

http://www.urbanonramps.com/psalm34/index.php?&feed=feed

mellow week

2005-03-12T08:01:00.000-08:00

The doc did not have Sam on any chemo this past week. He went in from blood test at the clinic yesterday and got an ANC reading of 0.4, still very low. They did not check him then. He goes back this Wednesday for a full checkup. Our hope is that his blood counts have recovered enough to begin the next round of inter-maintenance which is "mellower" than last time. He gets doc visits every ten days. But we'll see. We are trying to plan a Spring visit to the family back in Brooklyn, and we've got to wait a bit before going for plane tickets.

Grandma Muslimah went home yesterday. She was here for two weeks, and it was an incredibly wonderful time for our family. She's a blessing.

Kafi was Sick Sick Sick yesterday. She went to the doc who said she has a sinus infection. She laid in bed all day. Sam went to Aunt Shirley's, and our friend Ilene took Micah for the night. I went with Flo and took the Harambee Children's Choir to sing at the Child Evangelism Fellowship banquet. When I got home at 8am Kafi was asleep, dark stupor passed out asleep. She slept all night, but when I woke this morning she was out of the bed, cleaning! She came through sniffling and hacking and I asked how she was and she said, "I feel good." Mothers.

Tonight is a neighbor girl's quinceaneara, a Mexican sweet 15 party. Somehow I ended up on the list for providing and/or filming the video. I don't know how I get signed up for these things. But I was out of town for three days this week, the folks couldn't reach me, and now they have someone else.

This week, in San Antonio, I met a person from Michigan who says she reads Sam's blog regularly and prays for him (and us). That really touched my heart. There are days when it feels like it's just us here, battling the disease and battling "the cure." I was surprised by how much my spirit was lifted. Thx.

Sam's back home

2005-03-06T14:37:00.000-08:00

They released him early this morning. They had kept him for observation. Duly observed, they didn't see anything, and now we are all here. Thank you for your prayers and support. Grandma Muslimah spent the night with him at the hospital, as Kafi and I were at the Harambee Annual Dinner, which went very well. Now it's just a slow, tired Sunday afternoon. Auntie Zola just came, which is great for the kids and a great help to us.

morning update

2005-03-05T07:25:00.000-08:00

Sam is doing just fine. I'm hopeful that they'll release him this afternoon. It's observation that he's under, and they've observed a kid who wanted a corn dog for dinner, watched the animated Sinbad movie (which Dad thinks was Great), and didn't want to go to sleep. The best thing for them is to hold him for blood culture results, which begin creeping in at 48 hours. But there's a chance he'll go home with a strong antiobiotic today.

It's been an ok week. Since Wednesday he actually has not eaten much. On Wednesday he literally ate almost nothing. After the clinic visit yesterday, where we asked lots of questions, we figured out that it might been the strong antiobiotics from last week's hospital stay that may be suppressed his appetite. Thursday he ate a little more. So he's just been weak, the ANC is low, he has this cough that's not helping - then he shivers in clinic. So we are just sitting here now, waiting for breakfast. He wants to go out of the room, maybe to the family room. We'll see. Thanks for your prayers and support.

Life Happens

2005-03-04T14:23:00.000-08:00

Sam is checking back into the hospital for at least tonight. He got a shiver today while he was in clinic. They don't know what that was (often it's a sign of a fever coming and/or an infection) so to monitor him they are checking him in. This is unexpected. We've been at the clinic since 9, we being Muslimah, Sam and Micah. I expect that this is rather routine, that his body is pretty weak (still) because of the chemo - his blood tests showed an ANC of 0.2, still pretty low. The combination of his cold and the heavy chemo have kept his counts low. We are one day away from our annual dinner. I'm glad Grandma is here. Sam is not going to be too happy to be back in the hospital. Unless he's looking forward to Power Rangers, in which case I guess he will be. I'll check back soon.

emergency room visit for someone else

2005-02-28T13:36:00.000-08:00

Ilene, the admin assistant at Harambee, took her five year old daughter to the emergency room this morning. Somer put a little plastic bead into her ear. Ilene was concerned, it took the docs a bit, I went down there to provide support, and about an hour ago an ENT specialist came by and yanked it out. Going to Somer's bedside, I passed the little room where Sam lay when we first heard that he might have leukemia, back on July 12, 2004. It was a moment with some mixed emotions for me. I'm glad life keeps going. Sam is doing well. When I saw him last he was jumping up and down on my bed, saying, "Dad, watch this!"

"the worst days are great when you have your children and a supportive spouse with you"

2005-02-28T01:04:00.000-08:00

Got this email from a new friend:

Hi. I am [J.R.]. I live in Alabama, and I just visited your web site. I want you to know that your son will be in my prayers. My daughter was diagnosed with Hodgkins disease 4 years ago at age 19 and has undergone two bone marrow transplants and chemo and/or radiation treatments almost continuously during the four years. She is very debilitated at this time, but still I am very grateful for the blessings God has provided to my life through her during all this.

We have been looking forward for the past few months to her getting stronger, so we can travel to Pennsylvania for a clinical trial, but we are excited now that the cancer seems to have stabilized while she is recovering.

I know your experience with such a young child must be very difficult, but fortunately we live at at a time when through God's blessing of medical science much can be done. I can tell from your web site that you lean on your faith and of course that is all we ever really have. Hang in there and know that the worst days are great when you have your children and a supportive spouse with you.

Thanks, JR, for writing with this encouragement. I said a prayer for you right now. I pray your daughter's strength of spirit during a very challenging time, and for a blessing on your marriage.

sam is home

2005-02-26T08:36:00.000-08:00

And he's thoroughly happy, glad, satisfied, energized, etc.-ed to be here. He slept good and very hard last night. Kafi and I slept in our bed. Grandma kept Sam in her bed and also on eye on baby. Today it's peaceful, save for Ninja Turtle Rocket launches and baby crying for food. That's very welcome.

coming home today

2005-02-25T12:03:00.000-08:00

Kafi just called (I'm at Starbucks, caught up on a little work, and now about to go pick up Grandma Mu). They'll let Sam come home today. He will have to take a powerful antibiotic for a few days, plus he needs his vincristine and Peg (the double shot in the thighs). But this is great news.

past midnight

2005-02-25T02:51:00.000-08:00

As I write, Grandma Muslimah should be sitting in her seat on the American Airlines flight out of JFK to LAX, 6am EST departure. I'll go to pick her up at noon. Sam is feeling much better. His temperature has been down for 24 hours. Last check was below 98.6. He is energetic (well, not now, he's sleeping, you get my point). He attended a magic show in the playroom with other pediatric cancer patients, and had a great time. Kafi and Micah came for a few hours. Kafi's amazing, making 10-15 phone calls related to our Harambee annual dinner (btw, you are invited) while sitting on the bed with Sam and keeping an eye on Micah. I thought I was a multi-tasker, but I think I'm just plain old A.D.D. I should be sleeping but I'm up. I slept for three hours from 830pm to 1130pm, when I woke up because a certain someone had a little bed accident. It got on my shirt. I have no other clothes, because when we were in the hospital last I brought a bunch of clothes and barely used them, so this time I packed bare basics, but somehow forgot another shirt. I'm sitting here wearing a hospital gown and jeans; call me a trend-setter. It's all good. It's certainly much better than the boy we are sharing the room with, Daniel. He is six years old. He looks like he has cancer: very pale, white skin; bald head; droopy demeanor; not too much laughter. He was diagnosed with leukemia a week before Sam did. He's been here since Monday with a fever and a persistent, heavy cough. In his sleep he whimpers, then gets up to cough. They keep bringing in cough treatments, respirators, and albuterol treatments for him. His father is right by his side. I was getting very concerned listening to him, but his doctor just came in and told the father that his counts and body temperature are improving, so that makes me feel better. I try to pray for others here in the hospital, and I also pray for you who are helping provide spiritual support for my entire family. With all my nervous energy I've done things like this - it's the new design for the Harambee web site, it's not yet public/live, but should be very soon. You ever seen a nonprofit organization that had a blog on its home page? I haven't either. It's a bit of an experiment. I hope it works.

The other day Kafi and I figured out that the doctors caught Sam's leukemia within seven days of onset, which is extremely early detection, which bodes very well. Let's see if I remember how we discovered it. Kafi found it. She read some papers that the in-home nurse brought (the one who administers Ara-C at home). The papers describe Sam's entire diagnosis and prognosis. Aw, heck, I don't exactly remember. But (not that I let something like ignorance stop me) I think it was that the white counts were at a certain number that was not the highest. Or maybe that the doctors at Huntington Hospital at midnight on July 12th could not exactly tell if it was leukemia, and they referred us to a cancer hospital for testing confirmation. It's something like that. It was so early in the game that they couldn't just identify it right away as leukemia, so had to send him to experts.

tying up a plastic fork with a wet noodle

2005-02-24T10:39:00.000-08:00

Sam is feeling better this morning. His fever broke last night, after some sweat and tylenol. He ate a little bit, hasn't eaten much for a few days, and his potassium is low, so they will drip potassium into his line over a three hour period. His spirit is up. Kafi had a tough night with the baby, she was up half the night, didn't say why exactly, and she's tired. We're all tired, but we appreciate your support and prayers and emails.

Sam has been using wet noodles to tie things this morning. He ordered spaghetti noodles with no sauce for breakfast. Yuck. An orange, too, and he ate a few slices of that. Hasn't touched his strawberry breakfast shake, which is fine with dad, the human garbage disposal. I... must... take... a... shower...

some links

2005-02-24T02:23:00.000-08:00

The Cheerful Oncologist is a blood doctor who does lots of work with cancer patients, and he's got a blog. It's interesting to get in the head of a cancer doc.

Here's a fahrenheit to celsius converter web site that I always google up when trying to figure out Sam's temperature (whether we are at City of Hope or not).

Sam's fever has come down. It was 37.2 (or 98.9) last they checked. His blood pressure is fine, too, after having a really high blood pressure reading earlier - but we figured out he had just had the blood transfusion, hence there was a lot more blood in his body than usual. He also received platelets yesterday/today. He's sleeping relatively well right now, stirring to cough every hour or so, but falling back to sleep.

almost bedtime

2005-02-23T19:12:00.000-08:00

... here at the hospital. Sam continued to have a fever today. They sent him down for another chest x-ray, and they started a blood culture to see if there is any infection anywhere. We are here through Friday at least. He's fever, at the moment is almost gone. I ordered him dinner, but he hasn't touched any of it. He was cold, but then I put some more blankets on his feet and he feels better. He enjoys the playroom, and we went back this afternoon for a little bit. Old Mac laptop: if anyone has an old mac laptop that runs OS 9 or higher, and you'd be willing to part with it, that would be a help. We were trying to use this windows laptop but it keeps freezing and crashing, and we can't run any computer cd games. He uses my laptop at times, but I'm also trying to do a lot of work though we are squirreled away here on the third floor. Thanks.

docs just came by

2005-02-23T11:45:00.000-08:00

It looks like they are going to keep Sam a few more days, I'm guessing at least two. Dr. Pawlowska and nurse Debby and another doctor, Ewing, came over and asked about him. Because Sam has kept coughing, they've called for another chest X-Ray to see if there is anything else. They are withholding his chemotherapy because of the fever. As I talked with the doctors I thought of The Cheerful Oncologist, a blogger who is an oncologist (blood doctor) elsewhere in America. This blogger talks about how doctors are constantly thinking through new developments, changes, and how to apply establish protocols to health situations as they emerge. That's what I saw in the faces of the doctors, them thinking through the data. Please pray for them, too.

Just peeked on Sam again. Somehow he moved off of drawing to a Rescue Heroes board game, and he got Daniel, the other boy, to play with him.

he just went into art therapy class

2005-02-23T11:20:00.000-08:00

Sam and I were in the playroom, going through games, and had settled on Chinese Checkers. It's not that we play the game, but the game items are marbles and a board with holes on it. We commenced to play barrio style marbles. Then a woman came in and invited Sam to art therapy class, where they draw lots of pictures. Sam wanted to participate. He signaled ever so gently, but when asked he nodded yes. Then another boy came in, who is about five years old and has a completely bald head. I recognized the semi-vacant look in his eyes as one that Sam often has. It all teared me up. But two things quickly stood out. Sam was very interested in the class, eager to paint. And the teacher/therapist is very good. She was gentle, tender, and that's what these little boys need in this setting. I left, with Sam fine with me going back to the room, then walked back a few minutes ago. Sam was involved like he is at Harambee Prep, comfortable, and I'm glad. It's not fun being in an institutional setting, but he's hanging in. Thanks for praying.

wednesday

2005-02-23T08:33:00.000-08:00

Sam gets a blood transfusion sometime this morning. His hemoglobin count is low (7.6). He woke up coughing up a lot of mucus. I got concerned, but then talked with Kafi on the phone and she said, "Oh, that's good, it will get it all out. Yesterday he was complaining that he couldn't get it out." Slept with him in the bed last night. There is a nice comfy chair that folds out to a sleeper, here in the room, but you cannot sit up in it, because the back support gives way and reclines. Somehow I'm sitting here now, typing this, in same chair. Sam is watching a very average disney movie called The Pebble and the Penguin. If you've never heard of it, there's a reason: it's unremarkable, to be charitable. I keep offering Sam food, drink, but he doesn't want any of it, just sitting there holding his cup in case he needs to spit into it. He woke up saying, "I had a good sleep," so that's good. He wants to walk around the hospital, but until his transfusion I don't think they'll let him off the third floor.

I had a good couple of hours yesterday afternoon. Dropped off the newsletter at the print, so that's in motion. Got back and Aunt Shirley and Kafi and Sam and Micah were having a good time. They brought snacks and movies and lots of educational-type materials. Sam is still coughing a lot, more than I've seen in months. I'm guessing it's just a cough. Evidently the beds on this floor are full of patients who came in just like Sam, with a seasonal cough and/or chemo-induced fever; lots of coughing can be heard, including the young man who is sharing our room. I'm wearing a mask, we've all got to wear masks. It's starting to chafe my ear a bit.

Let's see. Here's a list of things I left at the house: John Grisham's new book, The Broker (I'm halfway through, Kafi's already read it); Napolean Dynamite (left it in the bedroom; for me, not Sam); an actual raincoat, I just walked out of the house with my denim shirt (which, in most dramatic situations, will suffice, but it's wet out there).

Sam is playing with the in-room phone and asking when his blood will arrive. I think he feels better.

we're back in the hospital

2005-02-22T16:16:00.000-08:00

Well - Sam got a fever again this morning. He didn't feel that great, so I took his temperature. First time, 101. Second time, 102.1. So I called and they said bring him in. Took him in to clinic. Put us immediately into a side room. Put his port back in - he didn't like that at all. He's in his spiderman full body pajama, and he let us only lower the zipper to hook him up. They tested, said he's "neutropinic" - meaning his "neutrophils" - the things in the blood that fight germs - are gone. He's on ARA-C, which knocks him out anyway. That combined with the fever made it an easy call: admit him. Initial estimate is 2-4 days, UNTIL HIS COUNTS RECOVER... yikes... when he's got no fever it takes a while for his counts to recover. I'm emotionally preparing myself to be here til Friday.

To top it off, Kafi has a sore throat. She went to the doc, doc said it's probably a virus, so she's got to watch out and take care.

Sam is pretty ok. At fear of projecting too much on to him, I think he really doesn't like being here again, he's got his deeper emotions and fears, he misses Mommy, he keeps asking about Grandma, he cried out loud at the X-Ray, didn't want to take it, made me have to hold his arms while I pressed him against the X-Ray; then it was back to thumb in mouth. He hasn't been eating much. Kafi came with Micah and Aunt Shirley, brought food and games and party(!), which is great. I popped out to finish the Harambee newsletter and get it printed at Econoprint in Pasadena. I'll be back by 6pm, I'll spend the night, Kafi needs to be at home resting as much as possible.

THANK YOU for your ongoing prayers. I feel like Kafi and I need them as much as Sam, which is a d*** selfish thing to write, but hear what I'm saying, we just need the prayer, too. And I've come to understand how important spiritual strength is, and mental strength. Sometimes I think we need materials things, but then I realize we don't need things, but we need intangibles to just hang on, do the right thing, to be able to look back and know that we did the right thing, the best, we tried, and when we didn't measure up it was ok, because we loved. Or something like that. I'm reaching for it, but feel me.

Will keep you posted. Thanks, Dave, for bringing by the cooler with drinks; thanks, Debra, for driving out here on business. Thanks, harambee staff, for doing your thing to the Lord first and as part of our team.

Waiting for Lulu

2005-02-21T09:59:00.000-08:00

Sam gets his last Ara-C push in a few hours. Nurse Lulu will pay a home visit to administer the stuff. Sam hasn't thrown up for a while. He's taking his Zofran faithfully, and waking up at night to take his 6TG.

Kafi and Sam watched a Moses movie on TBN last night. Kafi went to change the channel and watch something else. But Sam insisted on watching the movie. He asked lots of questions. When the movie was over he told Kafi that he wanted to know God more. Kafi came and got me and we prayed with Sam about this.

It's been raining so very hard; biblical proportions. Inside the house we don't notice anything. I'm so grateful that we live in a decent house with no leaky roofs.

Micah is teething! And won't sleep very long during the day. Man. Life.

Kafi made waffles this morning on the waffle maker. Mmm. Now Sam is playing a Clifford cd game on Kafi's computer. I'm folding clothes. We had a leak at the top of our water heater, and the leak went into both the laundry room and our bathroom (uh, did I just say above that we don't have leaks? I meant from the roof). Big Ronnie came over and fixed it, and today he'll return to assess linoleum damage and let us know how much life remains in the water heater (there is a bunch of corrosion at the top).

Grandma Muslimah comes on Friday! Can't wait. Sam said last night, when I held his 6TG up to his lips at 11pm, "I miss grandma."

waking up Sam to take his chemo

2005-02-18T07:02:00.000-08:00

Here's our latest routine: Sam's current nightly medicine is called 6TG. He must take this at night on an empty stomach. So - we let him fall asleep (last night before 7pm, but often between 8pm and 9pm, he just doesn't want to go to sleep) and then after 2+ hours I wake him up. I pick him out of bed as if he's a 2 month old, carry him to the bathroom, let him go, and then - still 3/4 asleep - I tell him that he has medicine to take. He whimpers, then comes close, and I hold him very close, two hands, two arms, caressing his almost hairless head. After a minute he tilts back and let's me give him his medicine (it's cherry flavor, dad says) and he takes it compliantly. Then I tell him go back to bed and he crawls back into the center of my bed. Thank you for your prayers, he takes his medicine much better these days, not the war that it used to be.

a portion of the profits...

2005-02-16T23:48:00.000-08:00

...from the two web sites below will go toward assisting Sam in his recovery. Thanks, Anita, for making this happen.

29elevenart.com -- Christian art and gifts for a new generation

bellezzadivita -- Art to Have, Art to Give, Art to Love

Hoarding Zofran

2005-02-16T08:56:00.000-08:00

During this phase of chemo Sam needs a powerful anti-nausea drug called Zofran. It works wonders to cut down the incidence of throwing up. There's a problem in getting Zofran. Insurance only allows us to purchase 9 tablets at a time. It's so expensive that one way insurance companies limit the cost is by limiting the amount a person can take. We pay $25 for nine tablets even though we have good insurance. The real cost is near $180, or $20 per very small, very light, wafer-thin Zofran pill. The first time around using Zofran we ran out very quickly. The prescription says to use it every 8 hours, but it was suggested that we use it every four hours, which we did. Sam was helped immensely, but we ran out. What Kafi and I do now is hoard the Zofran. In December, for example, when he didn't need it, we still went and bought some, and slowly stockpiled. Right now we are ordering more tablets every three days, making sure there's enough for when he really needs it. For those of you who have helped us out, I'm not only grateful. When we go to buy medicine I usually use a debit card that is attached to the online account that you have contributed to. When I hand the card to the pharmacy attendant, I am reminded to pray for the people who are praying for Sam. Thanks.

sort of uneventful

2005-02-15T22:31:00.000-08:00

My day was a blur. Let me first say that Kafi's days must be twice as intense as mine, which is why I gotta up my game in the house (for example, I put away more clothes yesterday than usual). I took Micah to the doctor to get her vaccinations. Not Fun. At all. By any stretch. Brought her home around noon, went to sleep with Sam (naptime), got up around 330pm, Kafi went to Harambee so that at least one of us could get some things done, I had a crying Micah and a pretty patient Sam. How do mothers do it? Kafi came back and things settled down a bit, it's great to have two sets of hands. Kafi cooked, I cleaned up some more, we prepared to host our church's small group (we are doing the 40 Days of Community over at PCOG). We had a really nice time together, and we prayed for each other. Afterward Sam was energetic. He watched American Idol with us and even played like he was singing a tune. Silly. It was tough to get him into the bed, but we did. In about a half hour I'll wake him up and give him his 6TG. That's his nightly medicine that he must take on an empty stomach. Since he usually says he's hungry right at bedtime (even after a full meal) Kafi and I have decided to let him fall asleep, then wake him each night to give him the medicines. It's pretty easy to wake up after a few hours sleep since Micah wakes up constantly all night, every few hours.

photos online here

2005-02-14T08:22:00.000-08:00

right herrr. Sam at City of Hope. Micah visits.

UPDATE 105PM PST: We have been cleared to go home. Doc still isn't sure what happened, but Sam has responded very well. He's energetic (though he and Micah and mom are napping right now) and his temperature is normal. Yesterday they ordered Ara-C at 10am and it got to the room by 4pm, so I hope we don't have a replay of that. The Ara-C was requested at 11am and it's already 1pm, so we'll see. He'll get Ara-C tomorrow at home, via home nurse visit.

doing much better

2005-02-13T22:38:00.000-08:00

Sam is asleep. He's had a good day. Zola spent the night with him last night, allowing me to go home and be with Kafi and Micah. Thank you, Zola. Sam actually was the one to ask if Zola could spend the night with him, not me. Sam's fever is gone, his body temp is normal. They doc decided to begin his chemo - last night they did not give him his regular stuff, for observation purposes. But he's taking his chemo now, since things look so good. Tomorrow morning Dr. Pawlowska is the on-duty doctor, so we'll see her in the room.

I'm guessing that it was the Ara-C that caused the fever, as that is one of the possible side effects. If so, they can either keep him in the hospital for the duration of his Ara-C treatment (four days total) or they can send him home, allowing him to get his Ara-C via a home nurse visit, and Kafi and I keep a very close watch on him, bringing him back immediately if his fever spikes again. I suspect that the doc will allow us to leave the hospital tomorrow, as it's only the first time that he's responded this way to the Ara-C, and perhaps it won't happen again. That's what we are praying for.

A few of the nurses on rotation I recognize from our last stay on this floor, in late August. Two of them said that it's been a long while since they've seen Sam. I said, "Thank God." It's not common that a patient like Sam goes so long without having to stay in the hospital. I hope it bodes well for the future.

I don't know if I mentioned it below, but one doc said that, over time, Sam's body is generally being weakened by the chemo, and as the months pass he may be more susceptible to chemo side effects. I don't know; he looks strong to me; but we will monitor this very closely.

It's very hard to ask for things, still. And it's a bit fuzzy, but if you would like to make a contribution to help us care for Sam, now wouldn't be a bad time. You may hit the PayPal button at right if you choose. Kafi and I found ourselves a bit concerned about general finances recently. Please don't feel obligated or forced, no hard feelings if you don't. Just trying to follow the advice of a friend who reminded me that people cannot read minds, and that I should be direct if we have needs. Thanks.

The stories: A friend whose daughter is fighting leukemia told me, back in the summer, that one of the things you don't get used to is meeting other children and families up on the third floor, pediatric cancer wing. Until very recently, I hadn't talked much with anyone. But of late I've heard a few stories, and this visit talked to two other mothers. When we came yesterday I first entered a room that was very still, very dark, and very quiet, with one older-looking patient who was kind of bundled up. His mother had this hushed spirit about her. Later she told me that her son has ewing's sarcoma and is in the 10th round of 14. His cancer is in the bones that make up the hips/butt area (pelvis?) and I thought she said the doctors had removed those bones; that's what she said, but it's hard to believe, I mean, how does he live after this? She told me her husband fought off testicular cancer 17 years ago. Then I spoke to the mother whose child was in the second room we were given (somehow we did not end up in the first room). This mother said her little boy is four and has straight ALL leukemia, was diagnosed in August, and he's almost done with his chemo - which made me think that if Sam did not have this funny ALL with one "m" marker, that he might be done with chemo soon, too. Oh well. The other crazy story is that, a couple of week ago in clinic, this mother casually said to me, "Lot of kids been passing lately, huh?" just like you might say, "How about that Super Bowl? What's up with Philly's clock management?" Then she said that her son had some form of cancer that would require his leg to be amputated. Her boy is 8.

Sam will get his 6TG in a few minutes. I'll wake him up to give him that. I lowered the room temperature to 70, but now he's coughing, so I'll raise it. We went and toured the new City of Hope building. It's much nicer than this one. The new rooms are, well, they're great, but how do you say that about a cancer hospital? They are designed to have only one patient per room, they are spacious, they each have a private bathroom, each has one of those cushy chairs that extends to a bed. Odd, I found myself saying, "Cool," even though it's best for Sam if he never has to stay there.

Thank you for your friendship, prayers, support, and comments.

back in the hospital

2005-02-12T16:28:00.000-08:00

Well, for the first time since August we are back in the hospital.

Yesterday (Friday) was a scheduled full day at the clinic for some heavy chemo. We went in at 745am and didn't leave until 630pm. We left baby Micah with Aunt Shirley first thing, then came to the clinic. They drew Sam's blood and made an evaluation as to whether he was strong enough to proceed. His ANC was 0.9. Now, if he was under the regulation ALL protocal, they would have said no, because they want at least 1.0. But he's under the augmented protocol, which has a threshold of 0.75, so under those terms he was good to go.

He then had another spinal tap (LP - lumbar puncture) procedure where they gave him methotrexate. He slept for an hour after the procedure, that's how tired he was. Then they gave him some cytoxicin, which is so powerful that they give it to you, then they give you liquids for many hours after that, in order to make sure that the medicine does not remain in your kidneys, where it can cause serious damage. So we sat there, and waited, Sam watching some videos and dvds. Kafi went home in the afternoon, picked up Micah, and then took Micah to see our family doctor, as Micah had a rash. I took a couple of hours at midday to do some work, so Kafi and I traded off, and Sam and I stayed through the end. On the way home he fell asleep.

At home we got him into bed, but after midnight he threw up twice. He also, around 4am, began to feel hot. At 6am Kafi took his temperature and got a very high reading, so took it again and got 103. We called the hospital and they said bring him in to get checked out. So we got Micah to Aunt Shirley again, then came to urgent care, where they drew blood and we sat some more. Sam looked really out of it, hot and sweaty, and tired. They took his temp at the hospital and got 101.8.

Now, all along they've told us about fever, about keeping everything germ free, because we do not want a fever to complicate the chemo regimen. The urgent care doc said that it is either an infection or it might be a side effect of the Ara-C chemo Sam is taking (I forgot to mention that above - yesterday he got three medicines: methotrexate, cytoxin, Ara-C, plus we gave him his nightly 6TG - man, that's four medicines).

I think Sam's fever is a likely side effect of Ara-C, because it's been going down a little bit all day. They are not giving him chemo today, neither Ara-C nor 6TG, so they can check out the fever. They took a blood culture, the official way to check for infection, but those results are not available for 48 hours. We are praying it's not an infection.

We are here at least til Monday, and quite possibly for 4-5 days. So we're back. Sam did not want to come to the hospital, but he hasn't cried or complained too much. He sure doesn't want to be here, but he's ok right now. Kafi is going home tonight to be with Micah, and I'll be here with Sam. We are in a not-big room with another patient, so it's a cramped space, and only one parent can stay. City of Hope has just built a new hospital to replace this one, and the grand opening is any day now, but patients are not there yet. Were it open, we would be in a room of our own, bigger than this, with a private bathroom. As it is, it's cramped, but I'm also glad my son is getting the care that he needs.

Please pray for strength of heart and mind for Sam. It's a drag to have to keep taking medicines, and to get woken up almost every two hours for some medicine or procedure or go to the bathroom (as has happened the past few days). Please pray also for mom and dad, we are weary, I'll just put it like that. Much thanks to Aunt Shirley for stepping in with baby Micah.

he thought this up all by himself

2005-02-08T14:43:00.000-08:00

Look at closely at the photo and you will see that the trains are connected - magnetically - by paper clips. I have no idea how Sam figured that out. I certainly did not show him. But he called my name, I looked up, and there they were. If you click the photo, a much larger (wallpaper size!) image of this photo will appear.

That's my boy.

Saturday Night Live

2005-02-05T23:59:00.000-08:00

Just wanted to say that - Kafi and I are watching Saturday Night Live as we give this update. Sam is doing fine. He just finished his decadron. He's been eating like a grown man, about once an hour. He starts the second half of this round next week if his counts are up. It's been a challenge with this medicine, as it makes him irritable, demanding, and with heightened emotional attachment. As always, he is a funny boy, and now even funnier. Kafi really enjoys being able to spend a lot of time with him. She passes the days watching Disney together with him, playing, watching The Price Is Right, and listening to his jokes. His muscles are very weak, so he likes to cuddle and get leg and foot massages. He is already planning his next birthday and likes to list off who he is inviting and who he is not inviting (us, when he is upset; we get disinvited once every few days, usually after disciplining him). He is also looking forward to going to New York to see his family. His Auntie Asha is supposed to pick him up from the airport, he likes to remind us. We are going to try putting him back at Harambee School next week. Kafi will be careful not to overdo it. He visited Grandma Chavez last week, then had to rest for two days afterward because he played so much. Grandma Chavez said he ran and ran after Roque and Isaac and Nena, then would stop and sit and pant, then get up and run some more. He ran up and hugged Grandpa Chavez and said, "I miss you." Grandpa Chavez was very touched; he had to wipe a tear from his eye. Right now Sam is asleep in our bed with his Auntie Zola, who just returned from the Sundance Film Festival. We are here in the den with Micah, who just fell asleep in Kafi's arms. Micah has these funny red spots on her face, and we are wondering if they are an allergic reaction of some sort. Parenting - concern after concern arises; it doesn't seem to ever stop. We are grateful, though, for the family life that we have. Kafi has been reading her daily devotional, the latest reading being about work - doing what we do as if we are doing it for The Lord - and I started reading the book of Romans in The Message, where I was struck by how Paul greets the believers in Rome as "those who are loved by God." Our devotional times help us stay steady in the midst of some very busy and challenging days.

low energy

2005-01-30T20:49:00.000-08:00

All weekend Sam has been low energy. He's also clingy. Guess it's the decadron. He's all right, just needs to rest a lot. The medicine has not caused any major side effects, saved for the tiredness (no sores, nothing like that). He has spent a lot of time with Aunt Shirley in the past few days - that's helpful for us. He did want to come home early today, and he and I just laid in bed together while Kafi took Micah and went to the annual meeting at PCOG. The results from Friday's labs look fine. His ANC is 1.5, and they are just continuing with chemo. This heavy round should end in early March, then there will be two months of lighter chemo. We talked with pastor at church about dedicating baby Micah, and we've decided to wait until April so that Sam is well enough to attend the service (and be around a bunch of people) where we stand up front and dedicate Micah to The Lord.

this made me cry

2005-01-26T10:58:00.001-08:00

A friend emailed me this:

I had a dream last night! I dreamt of you, Kafi and the kids -- you all, us and someone else were heading off to an event where you were being recognized (you actually had a tie on). BUT I decided to stay behind at
your place because there were a couple of bad leaks from the rains -- I don't think I was actually going to fix the leaks as I was going to placed buckets to catch and empty the water until you all got back. Reading your email reminded me of this strange dream.

I had just sent something out about leaky roofs at Harambee. This just touched me in a deep way. I'm not sure what it means, but I think it means something.

UPDATE: Aaron also had a dream.

jake, 21, was just diagnosed with AML leukemia

2005-01-25T17:40:00.000-08:00

My friend Adam asks that we join Jake's sister in praying for him.

still runnin

2005-01-23T22:31:00.000-08:00

Though Sam is now a week into this new round of chemo, you might never know. The boy is running around. Laughing. Eating like hungry junior highers at Hometown Buffet. He's not as weak and woozy as we expected. At Friday's clinic visit his counts were still up there. He took his medicine like a champ. And he's not as irritable as the last time he was on decadron. I thank God.

Got an email tonight from a friend in San Diego. One of her best friends just got the news that her three-year-old daughter has leukemia. Tomorrow this woman and her husband find out what type. The couple speaks only Spanish, so my friend emailed me for advice. I wrote a lengthy reply, but basically our experience was that Children's Hospital people are on top of things, including with Spanish-language resource people and resources, so the parents just need to get into high-bandwidth education mode. Somewhere in my early blog entries on this site I wrote something like, "Imagine working on a Ph.D. in Nuclear Science, only you never passed junior high science class." The learning curve is very steep, completely necessary, and faster than humanly possible. I will pray tonight for this couple.

Carrasco Family, Jan. 2005

2005-01-22T13:12:00.000-08:00

Click on the photo to see a much larger version of this same photo.

back to clinic tomorrow

2005-01-20T21:48:00.000-08:00

This has been a hard round so far. It started last Friday. Sam basically had two months off (with light medicine). That round followed three months of intense chemo. So he had a little break, but not enough to totally recover. And here we go again. While he is not vomiting or anything like that, he is weak and easily tired, and very irritable. He started out slowly this week, but picked up some energy as the week progressed. But we go back tomorrow for more of the same. He'll get some drip chemo (vincristine and dauxorubicin and possibly methotrexate). We go in at 8am or so. Other than that he's doing great. He loves to play. He found some shows he enjoys - Rugrats, Jimmy Neutron, Connie the Cow (you get the picture). He has this Teenage Ninja Turtles book that he really likes. He's played with a few friends, including Joanna from up the street. He's having a movie night tomorrow night with his best friend, Shelby. He LOVES his baby sister, and likes to watch her, help with the bath, and give her big wet kisses.

How is Kafi doing? She's ok. This week we sent Micah to Grandma Chavez for three days, and that was helpful because Kafi was free to get a lot done and focus on Sam. The baby is refusing to take the bottle when she's with Grandma Chavez. She took an hour to drink one ounce of milk from the bottle. She basically waits until Kafi shows up at 4pm to eat. We've been practicing with the bottle - we've been trying since five weeks - but Micah has not improved on her skills, so we have a few tricks we are going to try (if you have experience dealing with this, please email Kafi with your tips).

Last time at clinic, on Monday, we had an odd interaction with a woman whose son is being treated. She was sitting next to me and just started talking. She said, "Lot of kids have been passing lately, huh?" She said it like she was saying, "Lot of rain lately." I just looked at her and said, "Who?" She named some kids, and pointed out one teen in a photo at the nurses station, saying that he passed right after Christmas day. She asked how Sam was, and I said he was doing well. I asked what he son had and she said Ewing's Sarcoma. I asked her to explain it, and she said it's a cancer that gets deep into the bone. The docs are going to amputate the boy's leg. He looks like he's about six years old.

Well, what do you say to all that? I've been back in touch with feelings of mortality, and recognizing that each moment is precious, and remembering that nothing is guaranteed. I get a bit emotional about it all, and now that Sam is especially emotional because of the decadron (he tells me he loves me and he misses me all day long), well, it's been that kind of week.

off & running

2005-01-15T11:54:00.000-08:00

Ok, then, wow, it's been a week. I was traveling from Thursday night through Tuesday night, while Sam was just chillin with no medicine save for the thrice-daily Nystatin. I heard that he had a wonderful time with Grandma Muslimah. I also heard that Muslimah held Baby Micah the whole time (I have my sources). Praise God that my children can spend this time with their grandmother. While I was gone it rained (pick one) cats and dogs, hubcaps and tire irons, and at biblical levels. Life-long SoCal residents said they had never seen anything like it. Well, it snowed in St. Louis when I was there, but that is not unusual, and it snowed my first night in Seattle, which is unusual but it melted by noon. We have leaks at Harambee in four of the nine houses; hmmpfh. Sam reported none of this to me. He just happily ties up toy figurines with string. He's scared of the dark, sometimes. And he is cheerful about his medicinal regimen - I know many are praying that Sam takes his medicine well, and it appears he is.

Well, on Wednesay grandma flew back to New York. Thursday we took Sam to get blood tested, and his ANC shot up to 3.9 - needless to say, he was ready for chemo. So evening came, then morning, the 186th day since Sam was diagnosed with leukemia. He didn't eat all morning, but was not bothered one whit. He went in for a spinal tap plus drip chemo. On the way there Kafi and I had a spirited discussion, Micah cried, and Sam told us we were too loud. So yesterday Sam started round three of chemotherapy, what the spinal tap lady said was the most intense round, by receiving four different medicines - FOUR! He got metho-something, duanorub-something, vincristine, and is taking 6m-something (the paper is at home, I'm here blogging at Starbucks while I wait for the Harambee truck to get an oil change). He got a bunch of Zofran, creams, Pepcid for side effects - man, this reminds me of a Saturday Night Live skit, a recent one, with Cheri Oteri, where she plays an older lady who is addicated to prescription medicines, she comes on the show holding 15 or 20 bottles of medicines. Sam has meds and meds and more meds.

Oddly, for me, doc said that his counts won't drop again for another six days, even though he's on heavy med now - i guess it takes a little while for the meds to kick in. So last night Sam spent the night at Aunt Shirley's house. Good times. He didn't chuck, and he's fairly rested. We'll go get him in a little bit, make sure he takes a nap.

Thank you for your prayers. Please keep praying. I never cease to be amazed at how well Sam is doing in chemo. Another blessing: I started my first term as a board member of World Vision, and that's why I was in Seattle, and the other board member starting his first term turns out - as it happens - to be a pediatric oncologist at Children's Hospital in Chicago. He's a childhood cancer doctor, one of 15 in his group, and his group treats ALL leukemia patients. Very very small world.

Dr. Smith's bio says he works mostly on sickle cell but also cancer. It's a blessing to have such a close connection to a doctor like him, in addition to our great doctor and nurses at City of Hope.

On the teacups at Disneyland

2005-01-09T10:41:00.000-08:00

Got more photos from Disneyland and hanging around a few houses here. Our friend Gabriel used his disneyland employee status to comp us four tickets. We had a wonderful day. Thanks, G.

counts not high enough to start chemo

2005-01-06T22:44:00.000-08:00

Sam went in today, got the port hooked up (i.e. needle in the chest), they tested his blood - and his counts are not high enough to start a new round of chemo. He's down at 0.5, and they want it higher. So they did not start medicine today. They are going to give him another week and then test him and see if his blood counts are high enough. So Sam gets another week of running around, plus his grandmother is in town, so I think they are going to have a very fun time. I pray they do, at least. I've got some Disneyland photos to post, and I'll get around to posting them soon. I'm blogging this from the American Airlines terminal at LAX, where I'm waiting for an overnight flight to Chicago then on to St. Louis, where I speak twice tomorrow afternoon. Tonight at the INCM conference, where I spoke briefly during the plenary, I ran into a few folks who know Sam's situation and follow his blog, and they said they are praying for him and my family. Thank you, that was cool to hear from you.

make lemonade

2005-01-04T14:11:00.000-08:00

Life gives you lemons, make lemonade. First off, Kafi says my tone in the post below was a bit on the downside, and that she actually feels much better than I do. Plus I also feel much better than I did when I wrote that. Sam starts up big medicine on Thursday, so we are cramming in some fun activities between now and then, as I also mentioned below. We just returned from shooting family photos; not bad. We did not send out a Christmas card to friends, so we are going to send out a Valentine's card with a new photo instead. We have confirmed tomorroww for Disneyland; now if only the weather will cooperate. In other news, this week I'm blogging about the tsunami over at the Christianity Today web site. Check it out. Thank you for your ongoing prayers. Sam is actually getting stronger. Today, when we went to get the photos at the Glendale Galleria, I parked on the wrong side of the mall and we had to walk from one end to the other. Only Sam ran from one end to the other, and he's gotten faster, too. It blessed me to watch him run.

Speaking of running, Aaron and Andrea Ogle run the Phoenix Marathon this Sunday, in Sam's name. This is awesome. They have been training ever since Sam got sick. I pray they make it and experience great joy throughout. They're going to blog about it here.

just before the descent

2005-01-03T05:53:00.000-08:00

I feel like we are about to descend into something. On Thursday Sam starts his third round of chemotherapy. This will be an intense round, akin to what he got in September and October. I'm not looking forward to it. Sam, as usual, is resilient; I believe it's because of the prayers of our friends. I hate the way his body is weakened by the medicines. I don't like him being lethargic. I cringe at the aches and vomiting and redness around his eyes and gauntness of his features and paleness of his skin. His hair is falling out. He had such a good two months here, during the Christmas season. We knew this time was coming, and now it's here.

Ma Muslimah flies in from New York on Thursday. She'll be here for a week, God willing. She's actually been a bit sick, with a heavy cold the other day, and yesterday she felt a bit better. Please pray for thorough healing of her illness so that she can make it. If she's not feeling better, it's best that she stay in NYC and recover. She's coming because I'm scheduled for an out of town trip. I'll be gone for six days. We planned this all in advance. On Thursday night I speak here in town, in Anaheim, at a national children's pastors conference, and go immediately after my speech to the airport. I'll fly overnight to St. Louis, where I will speak on Friday at the Intervarsity Christian Fellowship national staff conference. The following day, Saturday, I fly to Seattle. I'm on the board of directors of World Vision, and we have a meeting on Monday and Tuesday. I return home Tuesday evening, and Muslimah returns to New York the following day.

We are praying that we can go to Disneyland on Wednesday, weather permitting. We were hoping to go a few days ago, but this weather storm cycle is unpredictable (it's weather; what did we expect?) There's a chance that Wednesday should be clear, and we are hoping to go to Disneyland from mid-day to early evening, then drive straight to Long Beach Airport to pick up Muslimah, who is scheduled to arrive around 8pm.

I just cleaned up the room that is my office. Yeah! I found so many papers, stuff that had piled up from the summer, when all this started. There were cards and letters from dear friends, some old and some new, expressing heartache and prayers for Samuel. Kafi and I are grateful for every person who contacted us.

Micah is micah, beautiful and alert. She's my papoose. Sam was looking at her last night at dinner, talking to her, and tickling her chin. She looked straight back at him, like there was no one else in the world, and laughed and smiled.

We will take a family picture on Tuesday. It will replace this one.

Bittersweet - we are doing the photo and Disneyland attempt because Sam will go down for the count starting on Thursday. Please pray for strength for his body and spirit, and for his parents to endure faithfully.

new photos & update on what's next for Sam

2004-12-25T21:59:00.000-08:00

Got some new pics of Sam and Micah here, including some Christmas Day shots.

I find I'm pretty tired at the end of every day, mostly due to the new baby's schedule. Kafi is bearing the brunt of every three hour feedings. But I help as much as I can, including a somewhat regular 4am-put-the-baby-back-to-sleep stint. I've kept up with most of my work duties, the house is much cleaner, we got through some busy holiday events intact, Sam is being cared for and wrestled into bed each night - but my blogging has slowed down, which is ok in the long run, but hey I love to blog, too.

Sam - last I mentioned we got that test done, the one that St. Jude's in Memphis recommended. The results looked very good, and we were and continue to be ecstatic. We try so hard to live life normally, upbeat, trusting God. There are days when it just doesn't seem like Sam has cancer, especially in the past few weeks. I'll just be grateful for these experiences.

Sobering thought 1: I'm switching life insurance policies, and part of the new sign up process is getting blood drawn. The nurse came to my house, was a total pro, really good in fact, and when it came time to draw blood I almost felt nothing. But I was very anxious about the blood draw, even though I think of myself as strong. It gave me a glimpse into Sam's world, because his entire treatment life involves a needle being put into his chest port. Every. Time. We. Go. He does pretty well, just hollering and screaming a little bit each time, but it happens every time. This last time he did it I was reminded all over again of how tough it's been.

Sobering thought 2: The doc said something that made both me and Kafi perk up, but it wasn't very positive. Kafi mentioned that Sam's muscle tone has weakened, and she asked about when his muscle strength would come back. Would it re-strengthen during lower intensity chemo? Or would we have to wait until all the chemo is done? The doc said that it would remain weak throughout treatment, and that his physical strength will never be at the level it once was (not doc's exact words, but close). It stunned me and Kafi to thing that Sam's body would be forever altered. But then we had an internal debate. I mean, look at Lance Armstrong; the guy set an amazing world record after cancer. Friends have mentioned the same thing. So I feel a bit more hopeful than we did when we first heard it. I purchased Armstrong's book a few months back but only read parts of it. I'm going to go back and read the whole thing.

What's Next: Starting on January 6, Sam goes back into intense chemo, just like he had in September. For the past two months he's been on a low intensity thing; now it's back up, full blow out force. Sigh. The doc said he gets decadron again! Oh, no, the Massive Munchies! But he only gets it for a week, so it won't be as intense. This is going to be some episode, since we already have a baby whose entire life revolves around sleeping and getting that next meal. Now it will be two always hungry tykes, but again, just for a short while. The cancer drug names have blurred, and I forgot to write down the exact drugs he'll be on. But you can rest assured that it will be something akin to Drano, Liquid Plumber, Windex and Clorox. That's my dumb joke that I tell to whoever will listen: they're giving him chemicals, after all, in just high enough doses to get the bad stuff but not bad enough to kill him.

Sam will be on this stuff for a strong two months, and I expect that his hair will completely fall out this time around. I'm debating whether to shave my head. I think I will not, and only if I detect that he has some feelings around not having any hair. I'll play it by ear. Please keep us in your prayers as we go through this new round of chemo.

Depending on how Sam responds, he could be done with his chemo treatments in late April, or he might have to take a more full set of rounds and go through late June. It all depends on how he responds. And so far, again, he's responded very very well, praise God.

Speaking of praising God: you may recall that I've had my share of theological, uh, wonderings about what the heck God intends with all this. The latest is that I've got a new perspective. I was looking back on 2004, wondering why a good God would allow my son to get cancer, and not feeling very thrilled about any of the reasons. In this instance, he definitely allowed something bad to happen, if not actually gave it to him (don't get me started, the Old Testament is very clear that the Lord brings calamities on people whenever he gets ready). So I was sitting there thinking that the one I'm supposed to trust was also my adversary this year.

But then I thought about many, many events where I've had no problem reporting, "praise God, thank God, God intervened, God provided, God met the need, God Jesus God God and some more Jesus." There was a bunch of crazy stuff that happened this year, - C R A Z E E S C H T U F F - and God indeed took care of my little family, the ones who are dearest. Each member of my family, save for me, was seriously in harm's way in 2004, but was delivered.

Sam got cancer, but he's in remission, he's getting great treatment, the docs say he looks great, we have health insurance, we have tremendous family support, we've got great friends, we've got blog friends who love us for unfathomable reasons, and things look good so far. We are not out of the woods, but it has gone as well as I could hope.

Kafi was in two major car accidents and is doing just fine right now, you would never know.

My baby girl was in the same two accidents in the womb, and she's is just fine and perky and alert and a bit nosy, all up in our business.

Harambee had a good year, even though the two principal leaders were taking body blows (so to speak) for at least half a year.

There's more blessing to the year, but I'll leave it at that. I'm grateful, yes, for the things that God has done for us, the good things, the blessings, the tender touch. And what do I say about this horrible cancer? I'm still fumbling for words, but I believe God has a plan and it's unfolding according to his will, especially as Kafi and I have committed our lives to his son Jesus and want, ask, desire, plead that God's will be done in our lives. All my life I've said I will follow you, jesus, no matter where you take me. I'm fully aware that 11 of Christ's 12 main followers died gruesome deaths of execution, and that today many Christians around the world are persecuted and killed for their faith. And I look up in 2004 and jesus took us to the edge of the abyss, to the valley of the shadow of death. what I know now is that it is not guaranteed that no harm will befall us; but what is guaranteed is the presence of God himself.

"Yea, though I walk through the valley of the shadow of death, i will fear no evil, for you are with me; your rod and your staff, they comfort me." Psalm 23:4

new photos

2004-12-16T06:28:00.000-08:00

Making a gingerbread house at Harambee Prep School, Sam in his uniform, Sam on the corner, and more - new photos, click here.

even better than the real thing

2004-12-14T10:51:00.000-08:00

We got the results from Sam's special bone marrow test. Things look really good. The standard tests for leukemia operate on a whole numbers scale of 1-100. Sam was down at 2%, which is basically nothing, when we last checked in late August. The docs at St. Jude's in Memphis recommended another test that can get down to tenths of a whole number, so down to 0.1. Well, Sam's results say that he's even below 0.1, meaning there is no trace of leukemia according to our most sophisticated scientific instruments.

Pictures forthcoming. Harambee Pre-School has yet to open, so Sam is attending the K-2 class, led by the very able Ms. Hamlin, for a few days. He's got a Harambee Prep uniform and everything.

I'm really glad for Sam. Thank you, everyone, for your attention and prayers and love and support.

this is really great news

2004-12-07T16:35:00.000-08:00

Leukemia pill has 86 percent remission rate

Sam had his biopsy today and he's just fine. He's here harassing me while I type, and watching World Race on DVD.

bone marrow biopsy tomorrow

2004-12-06T21:43:00.000-08:00

Tomorrow morning Sam has a special bone marrow procedure. Well, the procedure is normal - they will take out bone marrow. It's the test that is unique. There is a new test that analysis more precisely, more microscopicly, than anything else out there. It looks for any residue of white cell blasts that other tests can't see. It was suggested by our contact at St. Jude's in Memphis. I'm really glad Sam will receive this test.

He's awake now. It's 945pm. I had him ready for bed about 730pm; I don't know where the time went. Baby girl was crying and crying. And crying. I kept her while Kafi and Muslimah went to Target. She just fell asleep before they came back. Sam didn't. But he's all right. His hair is actually growing back a little on top. But Doc said that it will fall out all over again in January. Today we went to clinic for blood tests, and tomorrow - besides the bone marrow biopsy - he gets chemo, vincristine and methatrexate.

I lost track a bit with the fact that Sam is still going through chemo. I mean, it's not 6MP every night, and constant chucking. It's every ten days, and he's in good shape, no laying on the couch and looking weak and not wanting to move. But it's still chemo.

I was wrong below -- Kafi said Sam has been asking about his illness. He asked how long he has to keep taking medicine. Kafi said, "For a while." Then he asked about how he got "the germs," since he's well aware that we are trying to keep him away from germs. Kafi tried to give him some explanation.

This past weekend I was in San Antonio, speaking at the Baptist University of the Americas. I shared about Sam's fight with cancer. Afterward a number of people came up to me and shared about their own experiences with family members and cancer. Truly, this thing hits almost everybody.

well

2004-11-30T22:45:00.000-08:00

If you've followed this blog, you will have noticed that posting has been very light for the past few weeks. That isn't by design. What's been happening is that, with the new baby, relatively light chemo for Sam, and our continuing life responsibilities, we have not had the laser focus on Sam as we did before. It's a new family life that we have now. Also, it's just a matter of keeping up with the medicine now. He's technically healed, that's what remission means, but he must take all the chemo because research has shown relapses to occur at various stages during the four year protocol. So in a sense, no news is very very good news. We are trying to have a regular family routine. Plus it's just tough when you have a newborn. The longest Kafi has slept is five or six hours at one stretch, I think. So we are just moving along, trying to be as normal as possible, trying to get a routine going. In the past few weeks we have both worked hard at Harambee, just because we have responsibilities there. Again, because Sam's chemo is not so intense, he can move around a bit more, visit people, do overnighters. Aside from throwing up here and there, there is really nothing much to report. He hasn't asked dramatic questions about his illness or the medicine, and I'm grateful for that, too. So that's what's been going on. Life is still challenging in many ways, and we covet your continued prayers as we try to figure out this new family and chemo thing.

finally

2004-11-30T22:41:00.000-08:00

Thanksgiving photos

photos forthcoming

2004-11-23T18:52:00.000-08:00

really

one day til MaMu comes

2004-11-17T06:45:00.000-08:00

Grandma Muslimah comes tomorrow from New York. She'll be here for three weeks. Sam had chemo yesterday, vincristine and methatrexate, preceded by Zofran. He looked fine last night as we dropped him off at Aunt Shirley's to spend the night. It's going to be three weeks of party when Muslimah shows. Like it isn't already whenever he goes to Aunt Shirley's House of Treats. I'm grateful for my son's loving extended family.

Sam has a bit of a vocabulary. It's early in the morning as I write this, and I don't recall some of his new words. I think one of them was "encouraging." I try not to act surprised when he pops a new big word.

9PM UPDATE: Sam threw up at Grandma Chavez's house, at about 4pm, and then he threw up in the bathtub. In neither case did he have any Zofran in him - note to self, pump this kid with Zofran. We gave him some at 6pm, and now he's asleep. I hope he doesn't chuck in his sleep; he did that the other night. He pulled a sad face this evening and said he wanted his Grandma Mu to sleep with him. I said, "Tomorrow night."

Today Micah looks like me. She's got these big eyes.

back on Zofran

2004-11-14T23:04:00.000-08:00

Sam threw up in church. That was eventful. He's been throwing up for the past few days. Barfed in the bed last night. Otherwise he feels ok. It's either the vincristine or methatrexate that's making him chuck. He's also got a lot of mucus, as he's still fighting off the cold that he has.

new pix: halloween plus

2004-11-10T19:33:00.000-08:00

got a bunch of pics of Sam and Micah here

Sam at Grandma Chavez's house

2004-11-08T11:53:00.000-08:00

So Sam's counts are up, he went and saw The Incredibles on the weekend with Ilene and Somer, and now he's at Grandma Chavez's house, all day. It feels good for all involved - Sam, Kafi, Me, Micah if she could speak. Sam threw up twice yesterday. I guess it's the vincristine and methatrexate they gave him the other day. His appetite is strong.

By the way, Sam has no opinion on the election.

We bought a car on Saturday from CarMax. It's a 2003 Dodge Durango. It seats seven. We looked at a bunch of minivans, but Kafi felt like something different, as did I. It's a cheaper car note than we had before, which was almost our major criteria. I go to pick it up today. Sam wonders about the rental cars and other cars we go in and out of. I'm looking forward to telling him that we have a car of our own again.

some good news

2004-11-04T16:25:00.000-08:00

I'm afraid of sharing positive news, afraid of jinxing a no-hitter... that sort of thing... But here goes:

Kafi and Sam and baby Micah just returned from the clinic. Sam's ANC is very good. It's up to 2.8. That signals the official end of the second round of chemotherapy and heralds the start of round 3, which is called inter-maintenance.

He'll be on inter-maintenance for the next eight weeks. He will take Vincristine and Methatrexate every ten days. We visit the clinic just every ten days, not every week. With each session they will slowly up the dose of each medicine. If for some reason his counts begin to drop, they will relax the medicine. This is supposed to be a time for his body to heal, not to get suppressed immunity again.

If this stage goes well, he'll start round four, some intense chemo, on or about january 10.

The nurse and doc kept saying that Sam looked great. His appetite is picking up again, and he even wants to eat the good stuff like carrots, etc.

Tomorrow Sam has a spinal tap. Then we go back on Saturday for (drat) a PEG shot.

After Saturday the next time we go in is November 16. After that, it's the day after Thanksgiving.

ALSO - at this time the doctor is NOT planning to give Sam radiation. That would be awesome if it pans out. Doc will keep an eye on him through this next phase.

Do will also do a special procedure where they look even more closely at how many blast cells are in the blood, it's called residual something something (forgot the name). The procedure will likely occur before December.

It's all looking very good. Kafi and I feel relieved.

We are also going for flu shots right now. Our doc got us jumped to the front of the line, because of Sam's condition.

Also, pray for us, we are going to get a car this weekend, I feel anxious, but we need to close the deal and get something.

sick

2004-11-01T13:59:00.000-08:00

Not Sam - me. But I hate it. I don't want Sam to get sick. I've got some mild cold/flu thing (don't know which). I've been wearing a mask, washing my hands three times an hour, and being extremely cautious around Sam. He's ok. Visiting Grandma Chavez this morning (I'm about to pick him up). He loved being at Aunt Shirley's on Saturday (spent the night). It's great to see him happy. We battle every time he has to take Nystatin (three times a day). He thinks it will make him throw up. That's one of the hardest things, getting him to take it. He loves being a big brother, and is very tender with his sister.

where does it go?

2004-10-29T15:06:00.000-07:00

Time, that is. Can't believe it was Tuesday when I last updated. Sam and Kafi and Micah went with the Harambee Prep School kids to visit a pumpkin patch. A good time was had by all. Yesterday we went to clinic. Sam's ANC rose to 0.4, and we are waiting for it to rise to 0.7 to begin the next (admittedly milder) round of chemo. Nurse Debbie said we should come next Thursday for labs and then the following day we'll kick start round three. Until then, Sam is loose in the community.

Yesterday was also the halloween party at City of Hope. The kids - patients all - formed a line at the front entrance and then paraded to every floor and every office in the complex, where employees stood with baskets of candy. Sam had a cowboy outfit. Dressed, he and I went down to join the line. But when we go to the line, Sam stood back and didn't want to participate. He said he didn't want anyone to see him. Then he started stripping off his cowboy outfit. He took off the hat. Then the bandana. Then the vest. Then the chaps.

I was stunned. Maybe I was projecting. But it hurt me. I started to cry. I don't know why he did that. My guess is that it's just hard for him not to have control, and somehow that event reminded him of this odd odd predicament he's in. When Kafi came down with Micah (she had been feeding baby) Sam mellowed a bit. He walked with Mommy on the parade. They collected candy. His spirits rose by the end of the parade.

I do have some cowboy pictures, shot at home when we were trying on his outfit. I'll post those soon. He looks good. Maybe, once they figure out that satellite high speed wireless things, he'll be one of those Marlboro-men looking cowboys (when he's older), only one who's carrying a wrist-watch-computer that keeps track of his dad's weblog and his own personal market investments.

It's halloween; we all get to dream of being something different.

loose

2004-10-26T08:40:00.000-07:00

Sam's counts went up - from nothing to 0.2. That's not much. But we'll take it. He still looks pale, and tired, but his spirit is still there (aunt shirley says he's a lot like her brother, Sam's grandpa Job). Tonight he'll spend the night with Aunt Shirley. We went to the clinic yesterday and got blood drawn, and a port stick, but it was a good time. Kafi and baby were with, too. The nurse made a nice comment: She had a bit of a furrowed brow, showing concern for the low counts, then said, "He's had very smooth sailing up until now." We have - most kids experience all sorts of side effects. I thank God for his lessened pain

And last night Dad and boy boy ate a pomegranate (sp?). That was nice. We didn't stain anything, either.

City of Hope has a halloween parade/party on Thursday. We are planning to attend, going for a morning blood test and then hanging around until the noon gathering. Sam is looking forward to it. For halloween he's going to be a... cowboy. Whether this portends anything about next Tuesday's election remains to be seen.

It's 845am, and all (save for dad) are still asleep. Sam, mom and baby Micah are all asleep. With the late sunrise plus some overcast clouds, it's actually kind of dark out. I've been up since... 745am.

For those of you in the greater DC area who read this blog, know that Brian McLaren will be out tomorrow at Harambee, and we're expecting Trevor in his wake. It should be a good time.

comparison photos

2004-10-24T01:47:00.000-07:00

The first comparison photos are of Samuel on the left and Micah on the right:

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Next up: Kafi's mom, Muslimah, on the left and my mother, Felisa, on the right:

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Discuss amongst yourselves. No big whoop.

slowsaturday.com

2004-10-23T16:54:00.000-07:00

It's ok to say it: I have an enormous head. Micah's, on the other hand, is just perfect. Sam is with Auntie Zola and Nana and KJ, having a night out in West LA. Kafi is resting. I'm, uh, resting and blogging and catching up on email and holding Micah while she sleeps on my chest.

sermon with mention of Sam

2004-10-22T19:37:00.000-07:00

In Brian McLaren's sermon last week he mentioned a blog entry by his son, Trevor, made after Trevor visited Sam in the hospital in July. The section about the blog entry starts at the 28th minute. It's an mp3, about 6 megs in size. It was moving to hear Trevor's account of that visit. You may download it here.

It's likely that Trevor will come to Harambee this Wednesday, as his dad is speaking at our Harambee luncheon (note: if you are reading this, you are invited to attend). If he makes it, I look forward to him greeting Sam in our home.

cooped up

2004-10-21T08:48:00.000-07:00

Yesterday we were in the house ALL DAY. Couldn't really go anywhere or do anything. It was raining. Sick kid. Newborn. In the moments when I felt like I had work that wasn't getting done, it was hard. In the moments when I let go and just accepted the situation, it felt nice... nice to be a little family home together. In the afternoon Kafi busted out for a few hours and went to Harambee, and probably did ten hours of stuff in one hour. At dinner time I got loose and went to meet a book editor at an Olive Garden in Brea. They have a great new steak gorgonzola dish. I brought Kafi home the chicken marsala plate.

Sam won't eat much, still a bit afraid of throwing up. He's afraid of shadows, too, which I guess is about right for a four-year-old. He's been sleeping with us the past few nights. Kafi is asleep right now. It's hard being a mother! Old Teresa Kerry stepped in it yesterday when she implied that being a mother is not a real job. To her credit she fixed it quickly. Because it's tough, I see how hard it is on Kafi. Nevertheless, we are grateful for a wonderful son and a beautiful baby girl.

Today we are going to make a plan to get out of the house. We might go car shopping, as it's about time to go get another car. It's still an inconvenient time, but we gotta do it sometime. I wouldn't mind just driving, out to Malibu, up in the hills above Hollywood. But we'll see. I'm not the one who has to breast-feed on demand. Fortunately, the rain has stopped, it's clear out, and bright sunny.

Here's the November Harambee newsletter (PDF file; 150k download; open with Adobe Acrobat Reader). I wrote a bit about the wounds of Jesus, referencing Sam's ordeal.

Bono at St. Jude's in Memphis

2004-10-19T21:52:00.000-07:00

(I pulled this photo and caption from a news site)

ASSOCIATED PRESS: Bono, frontman for U2, greets Luseane Pese, a 10 year-old leukemia patient from Hawaii, at St. Jude Children's Research Hospital Tuesday, Oct. 19, 2004, in Memphis Tenn. Bono was in Tennessee to receive the National Civil Rights Museum's International Freedom Award. The singer/activist, known for his support to increase awareness of the AIDS crisis facing Africa, met with St. Jude researchers who are at work to develop an HIV vaccine. (AP Photo/St. Jude Children's Research Hospital, HO)

Very cool. St. Jude is considered by many to be the top childhood leukemia hospital in America.

a whole bunch of "the latest"

2004-10-19T18:16:00.001-07:00

Here's baby Micah with auntie Yoli, my sister. Yoli brought dinner over. Thank you to Yoli and our local friends who have graciously provided evening meals for us in the wake of Micah's birth. (And Sam and Jeanette, that was some good chicken.)

We went to the clinic today. Sam's counts (his ANC) are the lowest ever, basically nothing, zero. On the paper it says "0.1" but the nurse said that there are no counts. So he has no way to fight off any infection he might get; hello, hospital, if Sam gets sick.

So this is chemo. They were going to start Sam on a new round of chemo, inter-maintenance, but now they will hold off, because of the low counts. They're planning to start in two weeks. Next week we come in just to check him and make sure he doesn't need a blood transfusion.

They said Kafi and I should get flu shots, because of the high risk to Sam if either of us catches sick. So in this time of flu shot rationing, we've evidently got a jump to the front of the line card.

Aunt Shirley is sick, and we are unsure of Kalonji's runny nose is allergies or something else, so today has been somewhat of an isolated day.

The baby is just fine. J u s t f i n e. Relatively quiet, curious about the world around her (not the trinket toys).

In other news, in a short 48 hours we raised over $1,200 to send a boy from the Harambee community off to a private Christian school in Washington state. I'm grateful to everyone who helped out.

Our neighborhood has quieted down, especially compared to how wild and dangerous it was when Kafi and I first got married. But I just found out that last Tuesday a man was robbed at the corner store (next door to our house) for $400 in the middle of the day, in broad daylight. From time to time the peace is broken with speeding cars, the occasional gunshots, and police car chases that inevitably end up on Navarro Avenue. Talk about getting to know your neighbors. I'm most concerned about the crazy driving that happens around here, because there are a lot of kids who walk these streets, ride their bikes, etc. The reckless drivers, stop sign runners, street swervers are the ones that make me most angry.

Finally, here's the shot of son and dad's haircuts:

pre-Sam, mom and dad

2004-10-18T10:03:00.000-07:00

Sam saw me scanning this photo and asked to see it. He wondered what Kafi and I were doing. I said, "Posing for this picture." I was scanning it because one of Harambee's church missions partners requested a photo of the two of us for their Missions booklet.

This photo appeared alongside an article titled "The Color of Love" that appeared in Marriage Partnership magazine sometime in the 90s.

other people's stories

2004-10-18T06:10:00.000-07:00

Ed Salas, the pastor of Tapestry Church in Orange County, has a pre-teen son who is in treatment for brain cancer. Ed has a web site for Tim. I read through it, and was encouraged, amazed, saddened - every journey is different. People wonder how we are dealing with Sam's situation. I wonder how Ed and his wife deal with theirs. Tim has been cancer free for a little while, but still going through the treatment process. Prayers for Tim and the entire Salas family.

get this party started

2004-10-17T13:18:00.000-07:00

Mama Akilah and auntie Kaia just arrived. Auntie Zola and cousin Kalonji are en route. I'm heading off to the store to get some batteries for the digital camera. Photo shoot will commence shortly.

UPDATE: Photos are up here. Check out this shot. Sam and KJ were enthusiastic about blowing out someone's else's birthday cake candles.

"daddy's friends"

2004-10-16T07:11:00.000-07:00

Sam has become accustomed to cards and such coming in the mail, directed to him, from "daddy's friends." He asks who they're from and that all I say, "daddy's friend so-and-so, yeah, daddy's friend." If I actually explained who people are, he wouldn't get it. I tried it before, he just zones out. I walked in the house the other day and there was a box from Buy.com but it didn't have a name on it. We searched and searched, then went to Buy.com and UPS web site but couldn't figure out where it came from. So we put it aside for a little while until we find out where it's from. Let us know if it was you! We are grateful. Sam gets excited when the mail comes - he checks it now. He likes stickers, too, hint.

We are just cooped up right now. Kafi is very tired, happy but tired, cuz having a little six-day old baby is a "sleep two hours at a time" situation. The little baby is so cute. Sam loves his baby sister. Kalonji comes from Florida this weekend, and Sam can't wait to visit with his cousin. Pictures of Sam and KJ together are here.

The haircut went well. Sam doesn't like going to the barber because they use clippers and he doesn't like those. He says they hurt him when he gets a haircut. He started crying near the end, but he's fine. He's hair is completely lowered, but at least you can't tell where it's falling out. Daddy got a really short haircut, too, and NO ONE commented on it, so I think no one likes it. It's all good - I can take it - and I did it for my son anyway. My problem is that I actually really really really like my haircut. I plan to take a photo of me and Sam with our short haircuts sometime today, when I get more batteries for the camera.

Thanks to all who gave recently - you know who you are - because I'm turning in the rental that our insurance pays for and picking up another rental that we will pay for ourselves. Believe me, we are going to send the other guy's insurance (the guy at fault for the accident) the bill, but we are going to have to front it for now. We just haven't had a chance to look around for another vehicle, what with all that's happening. I got anxious when I thought about the cost, but then remembered that folks have graciously shared their resources with us, and I'm definitely dipping into those gifts for the rental. Thanks again.

We are really excited about the next couple of months, because the plan is that Sam will be off heavy chemo until late December, so that his counts can recover, and his body recover in general, and therefore he should be relatively free to move around the community. We will be active and out and about during the holidays, before going back into a two month chemo round starting late December.

Did I say that Sam asked if we could get a Nintendo at home? He almost loves going to the clinic now because he gets to play Nintendo. I said, "No, we will not have one at home." He didn't fuss. I really don't want that stuff at home, and don't plan on it. Maybe we can use it as a carrot for whenever he has to go in? That's what I'm hoping.

sam's hair is falling out

2004-10-14T11:24:00.000-07:00

=(

I'm taking him to the barber in a few minutes to cut the rest off.

overnight

2004-10-13T13:35:00.000-07:00

Baby was up a lot, Kafi slept two hours, then Sam threw up from his chemo, got into the bed, we had an accident, cleaned that up, Kafi stayed awake, she did a lot of stuff on email. Now Sam and I are at the table, him playing Reader Rabbit, me catching up on email, and Kafi and Akilah with baby at the doctor (just checking up on the baby). I don't know how house-wives do it.

UPDATE: Here's a photo of Sam when he was five months old:

I found this photo when I was going through some of Sam's online photos. This photo is taken from this photo set.

how it all went down

2004-10-12T19:19:00.000-07:00

On Saturday night Kafi felt the contractions were strong enough to go into the hospital. She called the on-call doc, they said come on in. We got there around 8 or 9pm. 24 hours later baby was born. Kafi was in contractions the whole time, they were strong, but not too crazy until mid-afternoon. At midday the action started. Kafi started to feel like she wanted an epidural, it took them about an hour plus to get it together, meanwhile she continued to dilate. When they finally gave her the epidural she was at 7cm. She felt better right away. Within two hours the baby came. Karyn had the cord blood kit and worked with the doctor to square everything away. If you don't know, the blood from Micah's umbilical cord may be helpful if Sam needs a serious procedure down the line, hence the importance of collecting it, then sending it north to the Oakland Children's Hospital. I was surprised at how quickly Micah came out after her head for showed (crowned?). It was less than five minutes, maybe three.

Sam was at Aunt Shirley's the entire time. He was very excited when we called with the news.

Today Kafi and Micah left the hospital at about 10:30am. Akilah and I brought Sam with us, so the five of us packed up the (rental) minivan and then took the slow road home, past Descanso Gardens, on the roads through La Canada that lead to the Rose Bowl. We got to the front door and held a photo shoot, then brought baby in. Within a half an hour Sam and I were in the car again, on our way to Sam's clinic appointment at City of Hope. He had blood drawn, and he did not need a transfusion. Sam got Vincristine today, and I think that's it for chemo for a few months (at least, them giving him chemo).

Oh, I stayed up all night finishing a grant proposal. I got two hours of sleep. I drove in to downtown LA and dropped it off at 8:10am. So I'm really tired, Kafi's really tired, Sam looks tired, Akilah is tired plus her back hurts, and baby Micah looks tired, too. But are we all happy? You bet.

click the photo

2004-10-11T10:43:00.000-07:00

UPDATE: More pics here

MORE UPDATE: Here's a picture from Sam's birth, May 25, 2000:

induced

2004-10-10T09:57:00.000-07:00

Kafi is in labor at the hospital. Early this morning they gave her Pitocin. We think baby girl comes today. Sam is at Aunt Shirley's. Kafi feels fine.

230PM UPDATE: This girl is taking a long time. Kafi is having more regular contractions, but everything is still below the 4 cm-level. We have been waiting a long time for Micah, and it looks like we are going to keep waiting into the night. But it is slowly getting more intense. I predict before midnight. But we'll see. The photo below is for Sam's benefit. It's of Kafi's hand - they gave her a "poke" and are administering medicine via IV. See, Sam - it's not just you, but Mommy, too. When Daddy gets a poke, I'll let you see that, too. I might even cry like baby: "Waaa! Waaa!"

not much to report

2004-10-09T06:44:00.000-07:00

The phrase "watching paint dry" does not describe our past few days, as it connotes a little too much excitement. Sam has been a little less energetic, no throwing up. When I take hold of him he usually says, "Ow, that hurts." Somehow his skin and muscles are more sensitive right now. Low platelets? He's starting to ask when he no longer has to go to clinic, when he can stop taking medicine. He's getting more conscious of lots of things in general. That comment about "saving for college" is indicative of something. I suspect he's going to start asking the harder questions very soon. Kafi is still just waiting. I asked her last night if she's been having contractions all day. She said yes. Basically, ever since the accident she's been having contractions. We went to the supermarket yesterday, got some food, that felt good, because supplies had gotten low. But we forgot the tortillas! What gives? We'll go back later this morning. Sam went to Aunt Shirley's yesterday. He immediately lit up when he found out he could spend the night. His ANC is really low, at 0.5, so I was unsure about sending him anywhere. But Aunt Shirley does a great job at cleanliness and protection. And Sam is tired of being at home with just us. So it's great for everyone involved that he can visit over there. He was hollering and cheering when he got to Aunt Shirley's, then he came and gave me and Kafi kisses and said, "Ok, bye bye." Move along, mom and dad. It's wonderful to see his spirits up like that. It's not that he's depressed around the house. But he wants to be with a group, running and playing and laughing. Thank you, Aunt Shirley, for providing that space.

i was rendered mute

2004-10-06T15:15:00.000-07:00

Last night, as we left the clinic, I stopped at the ATM to get some cash. I got $60, three twenties. Sam was standing at the ATM with me. When the money came out, he grabbed it. I told him to give it to me. He wanted to hold the money, so I let him hold one twenty and I took the other two. He put twenty into his pocket. We got into the car and drove from the hospital. We decided to get some burgers on the way, so I told Sam to give me the twenty. He said, "No! It's my money." I said, "I'm going to be the food with the money." He said, "It's my money for college." Akilah and I just looked at each other. I told him that if he gave me his one bill I would give him two (meaning, two one dollar bills). But he insisted it was his money for college. So I let him hold it. I'm glad the boy has been listening. I've talked to him about college, saying, "When you are in college..." But I don't think I ever mentioned needing money to pay for college.

Still no baby. Thank you to everyone who prays for us. I'm still mystified that you love us as you do, as I've never seen many of you in person.

long afternoon in clinic

2004-10-05T19:08:00.000-07:00

...and it's still not over. I'm blogging this from a computer here on the third floor at City of Hope. We got here at 230pm, we being me Sam and Nana Akilah. It's now just after 7pm. We are watching the VP debate and waiting for... well, let's see. He got a blood draw at 3pm. Met with doctor at 330pm. Came back and waited for platelets to come. Platelets came, those were given via drip. Then it was time for Peg, the two shots, one in each thigh - fun! Not! And now we are waiting one hour after Peg was administered to make sure there was no reaction. Oh, yeah, Sam got Vincristine via drip right after seeing doc.

Sam is playing Super Mario on Nintendo. It's the first time he's ever played it. We've managed to keep that stuff away from him all this time. But there's a problem: he's good at it. It must be in the water in America, where all kids are good at Nintendo. He just grabbed the controls, banged around, then started getting places. He's hooked.

Yesterday I was in clinic from 9am to 3pm. Today it's looking like 230pm to 730pm. 11 hours in this physical building, then transpo time to and fro. Meanwhile, I have responsibilities. I feel a little stress. Yet I know my first responsibilities, my family members. They bring a smile to my face. Thank you, Lord, for a Proverbs 31 woman and a special son, and for preserving this little girl through nine months of strangeness. May she bless you, Lord, all the days of her life.

you're not gonna believe this...

2004-10-04T15:33:00.002-07:00

First off, this is no big deal. It's just that Sam and I left the clinic this morning, after completing his blood transfusion (takes about three hours for a transfusion to happen), and he feel asleep. He's been sleeping less lately, tired, but just won't lay down. So the fact that he feel asleep is a big deal. Well, daddy knows that when we get home he'll wake up. I wanted him to sleep more, so what did I do?

I drove from Duarte to the Starbucks in Pasadena on Fair Oaks and Orange Grove, and parked. The windows are down, we are in the shade, and I have a Starbucks internet account. So I'm sitting here in the driver's seat, doing email and writing this update. I'll go home in a few minutes, and wake Sam up. We don't need him to sleep too much right now, since we want him falling asleep at a decent hour tonight.

Sam's hair is starting to get thinner. He's still got it, but I've noticed it slowly coming out (we don't see anything on the pillow in the morning, nothing like that). So we still might have a boy with a shiner at some point.

Bad daddy - we just sat in the clinic from 9am to 3pm, him watching TV, me reading and catching up on stuff. He ate like a bird, Ma Mu - which is to say, he's back to regular eating habits.

The baby - the baby is so ready to come. Kafi went to the doctor for a regular appointment this morning, and this was the report:

dilation is at 2 cm
effacement at 70 percent
baby's head is down, and face down, perfect position

doc says this baby is so ready to come out, inducement will likely involve just the breaking of water, and not even pitocin

Mom and Dad are so ready for "sissy," as Sam calls her, to come.

Ok, there is sweat coming down the side of Sam's head. Even being in the shade with a gentle breeze, that's not keeping him cool enough. I'm going to fire up the car and get us home.

in the house

2004-10-02T13:25:00.000-07:00

With Sam's low counts, we've just confined ourselves to the house. Yesterday's blood test showed that Sam's ANC is 0.3, even lower than last time, but because his hemoglobin was above 8.0 (at 8.6) the nurse said we could wait til Monday for the blood transfusion. This afternoon Kafi, Sam and I are going to go out and get Kafi some walking time, as we've heard from a few friends that lots of walking will help bring Micah along. We received a few cash gifts this week, and as I bought Sam's medicine, household items, and food I thought of the givers. Fondly. I thought of each of you fondly. Thank you.

nesting

2004-09-30T07:41:00.000-07:00

Kafi said she woke up in the middle of the night because of contractions. She immediatley thought of how junky the house was. She got up, went around the house, and dealt with the junkiness. "Nesting," she said. "I think it's about time." But the contractions did not get stronger. So we are here, waiting. And waiting. Sam went to bed late. I laid down with him at 8pm. At 9 he was still there, quietly next to me. I think I had dozed off. Then he was hungry. I stalled that, because I had yet to give him his nightly 6MP, which requires his stomach to be empty. I went and fed him, he got in the bed, went to sleep, and I went back to the bedroom and set an alarm clock for midnight. Kafi was awake. We watched the Saturday Night Live countdown of the 100 most memorable SNL moments (we are SNL junkies). Now we're awake, start of the new day. I'm actually trying to cram a bunch of little work into this space before Sam wakes up.

Kelly Schwartz came by, whose daughter Alanna fought off cancer (see link in post below). I had a great time talking with him. You go deep very quickly with folks in the same predicament. Turns out Kelly is also a researcher in urban youth ministry, and it appears to me that we were going to run into each other anyway, even without children with cancer. He had dinner with us. Kelly and I popped out on errands as soon as he arrived. We went to Savon for to pick up prescriptions, the Apple Store to get Reader Rabbit, and to Green Street Restaurant for a Dianne Salad (dig it). Thanks for coming by, Kelly.

Meanwhile, I'm still on an up from Tuesday night's game. For a great point of view, click on the photo below.

[ Thanks, Lone, for the picture ]

afternoon

2004-09-29T15:33:00.000-07:00

Day one of low blood counts. I was with him, then I took Ma Akilah back to West L.A. so she could help Zola move. Came back, Kafi and Sam were napping. Sam woke up and had aches on his knee and foot. Gave him some tylenol. He's tired. I'm gonna try and trick him back to sleep. A new friend named Kelly will visit within the hour. His daughter, Alanna, got cancer a year or two ago, and he's got some great writings up at her web site. I've been reading them, and they're encouraging because I can really relate to what they've gone through. For all who've made a gift to help us in this time, thank you. They know us well at the local pharmacy, and some of those medicines are expensive, even with health coverage. I'm also going to get Sam a Reader Rabbit computer game, as his old one is lost. I'm drawing for these items from our Sam fund. Thank you very much to all who have pitched in. Kafi and I appreciate it.

lowest counts yet

2004-09-28T16:34:00.000-07:00

We are here at City of Hope, and Sam's blood test shows that he has an ANC of 0.4, his lowest blood count yet. So he's now in risky territory, with his immune system at its lowest, and we have to be extra cautious. So it starts. He looks fine, happy, strong. But this is when kids are most likely to catch something. Instead of coming back in seven days, we have an appointment for this Friday so they can check his blood, to see if he needs a transfusion.

Kafi has had an ok day, not much by way of contractions, but we are still in "any time now" mode. I made a tough but very good choice and cancelled a speaking engagement I have back east for Thursday and Friday. Meanwhile, we are going to dash home from the hospital, they've got my clothes waiting for me, I'll change, then me and my brother are off to Dodger Stadium. Someone tape it, please.

UPDATE: Photos from Dodger Stadium are here.

Monday

2004-09-27T16:50:00.000-07:00

...and all is relatively calm. Sam was with Grandma Chavez this morning at Aunt Shirley's this afternoon. Akilah comes tonight, and tomorrow she and Kafi will take Sam to his scheduled afternoon clinic appointment. Kafi and I went to see her OB today. The indicators say that if Kafi goes into labor now, all will be ok. She's continuing with very mild contractions. She rested for a good chunk of today, and right now is wrapping up a few things at HPS. If no baby comes by October 6 we will have the doc induce labor. Sam has started eating more food, and it's been a few days now since he's thrown up.

This morning I read these verses from Psalm 22 (version: The Message):

Our children and their children
will get in on this
As the word is passed along
from parent to child.
Babies not yet conceived
will hear the good news --
that God does what he says.

Amen.

sooner than we think?

2004-09-26T16:08:00.000-07:00

Last night Kafi and I went to Verdugo Hills Hospital. Kafi had contractions and wanted to get them checked out. They sent us home, but said, "Sure, any time now." Any time could be today or three weeks from now. Kafi seems to think it could be in the next 48 hours. So we are getting ourselves ready, just in case. Not much by way of contractions today, but when you are on high alert, you are on high alert.

Meanwhile, I'm scheduled to throw out the ceremonial first pitch at this Tuesday night's Dodgers / Rockies game at Dodgers Stadium. That is, of course, if baby Micah is not bustin a move out of the womb.

Sam is at Aunt Shirley's right now. Kafi and I are just here at home. We went to church this morning, at Pasadena Church of God, and as usual Sam tried to cover his ears during the loud worship music time (he'll get used to it). We came back and Kafi slept and Sam and I laid on the ground in the den. I slept, he watched Bob the Builder.

We've got a rental minivan right now. Sam remembered the last rental minivan, a grey one, when our van was being repaired after another accident. The kid's got a memory.

still ok

2004-09-25T15:38:00.000-07:00

It's been two days since the last post. We are ok. Still. Kafi woke up on Friday morning feeling sore and achy, and still feels that. But she is moving around, doing things as before. The baby will likely be here within two weeks. She took it very easy yesterday, resting as much as possible. Akilah's presence yesterday was wonderful. Zola came by later in the evening. This morning we all went to Lowe's in Burbank and then over to IKEA, got some In 'N Out on the way home, and took a nap. Sam is still sleeping. I woke first, now Kafi is up.

Sam has throw up very little yesterday and today. In fact, in the past 24 hours he's thrown up just once - when I picked up yesterday afternoon, glad to see him after doing work outside of the house, and I rough-housed him a little too much. Out it all came. He's back to his skinny self, only with less muscle. He went from 54 pounds down to about 45-46 in a short span of time. His chemo last week was his Tuesday cocktail followed by three days in a row of ARA-C (a push, from a home nurse). Friday was his last push, so they took out his port and now it's just him. Today he gets Bactrim, the nasty liquid pneumonia-preventative he must take every weekend for four years. He must be getting used to it, like humans get used to dark beer, because he rarely fusses after he's swallowed it. He's tired, tired. I hope he sleeps a long time. He laid around most of yesterday, sideways, feet in the air, head hanging off the bed.

I'm still trying to adjust to what the heck is going on. My spirit is attentive to thing that need to happen: taking care of wife, taking care of Sam, try to be dutiful about tasks around the house, keep up with things at Harambee. I don't have any answers for why this is all happening, but I can't shake the fact that Kafi has now been in two major car accidents since the spring. The first accident wasn't quite an accident, because the van was not hit. But spinning three times on the 405 freeway while going 70 mphs, and crossing from the fast lane to the exit lane - that's an accident no matter how you look at it. Then Thursday's accident could have been much worse. Now that van is gone, gone. We've got a rental minivan that is covered by our insurance for a few weeks. Really, we don't have much time to be spooked, cuz we've got a baby-about-to-be-born and a boy-fighting-cancer to tend to. But it's all there, in my heart, and I'm asking God what he's doing. A few people said that we must be doing something right if the devil is attacking us this way. Perhaps. I was wondering what I'm doing wrong in my life to be going through all this. In the end, though, I just put my head down and put one foot ahead of the other, and try to do everything I know to be right and good at every chance I get.

But we're ok. Folks have asked. Thanks for asking. Keep praying for us, especially as it's hard to know how to pray or what to ask for - I actually feel like I'm waiting for the next crazy thing to happen, and trying to have my spirit up to deal with that.

we're ok

2004-09-23T16:19:00.000-07:00

Kafi was in a car accident at midday. Some guy ran a red light and hit her. She was alone, driving in our van. The van is totaled. The front end is smashed in. She called me and I came down (the accident happened at the intersection of Union and Raymond in Old Town Pasadena). We collected our stuff out of the van, then went to Huntington Hospital. We were there from noon until 4pm. They checked on the baby, and the baby looks fine. Kafi is in her 36th week, so any time is the time. They checked Kafi. She's got scrapes and bruises and will likely be very sore tomorrow, but otherwise is fine.

Since Kafi became pregnant with baby Micah, Kafi has been in one near-car accident, Sam got leukemia, and now this. We are a bit shaken, but ok, just glad to be home and resting. Sam is with Aunt Shirley, who came down and grabbed him after I dashed off to get Kafi (Tipton watched Sam when I dashed). Akilah and Zola showed up at the hospital, as did Yolanda and Andrew. Now Akilah and I are off to take Sam his medicines at Aunt Shirley's, as well as take photos of the wrecked van.

855PM UPDATE: We're just lying here, watching Survivor with Akilah. Here's a photo of the van (took it a few hours ago at the body shop):

out in the dry, hot sun

2004-09-22T15:30:00.000-07:00

We're going to Mike Mike's flag football game over at Pasadena Christian School. Sam's thrown up a few times in the past 24 hours, and we are having to give him lots of benadryl and zofran. It seems to be holding, for now. He slept well this afternoon. The home nurse, Lulu, came by today and gave him his ARA-C push. He cooperated. We saw Prince of Egypt on DVD. Dry Bones Dance sent it to Sam. He watched it twice. Christy, you are a hero.

Mama Akilah flew in yesterday and will come by tonight or tomorrow. It will be great to see her.

round two, phase two

2004-09-21T15:10:00.000-07:00

We are in the middle of the day at the clinic. I've peeled out to this Starbucks to get a little work done. We should leave the clinic by 6pm. Chemo is going well. We went in at 830 for initial labs (drawing blood, getting the port connected), met Dr. Pawlowska at 10, and started hydration and then chemo. He just got the cytotoxin and ARA-C at about 130pm, and it's another four hours of hydration (keeping the fluids flowing through his body that will take excess medicine away, protecting the kidneys and other organs).

Aunt Shirley is with me and Sam today. Kafi is doing some work, and she called to say she is tired. We are entering the home stretch, friends. I love my wife, and I ask you to pray for her now. I can't imagine what it is like to be Kafi right now: your first child has leukemia, you are about to give birth to your second child, and you are the principal of a small private school in the hood. She is brave, and courageous, and has a tender heart, and hopes and fears, and faith. Aren't most pregnant women, at this point in the pregnancy, sitting around, barely moving? Kafi is far from it, but it wouldn't hurt for her to get her rest. She's the type who doesn't like to sit around, ever. As you pray for her, pray also for the prep school, and our family, as well as for Sam. Pray for me, too, cuz sometimes I get my bad attitude and she's the one who has to deal with me. I see her, even with the pressures on me, choosing to be patient with moi. And I very much appreciate it.

tomorrow, restart

2004-09-20T06:48:00.000-07:00

Tomorrow Sam spends all day at the clinic. He will be starting the second phase of this consolidation round of chemo, and it requires that he be properly hydrated and some other stuff (I forgot). Last time he was in clinic for 12 hours. It shouldn't have taken that long, but we had to wait for him to use the restroom so we could check vitals, and it took him a while. I'm praying we are out of there by 4pm. Kafi will stay home with Sam today, Wednesday, and Friday. I'll have him Tuesday and Thursday. We are trying to create a new schedule for our lives, and maintain our responsibilities. I think we can do it, but it just involves a lot of change. Mama Akilah comes into town tomorrow, and that will be great. Grandma Mu comes back on Oct. 2. This weekend Sam didn't eat much, but he looks good. On Saturday we went to a birthday party for Grandma Chavez's grandkids, then to Yoli's house for bbq with the Carrasco side of the family. Yesterday I was gone from 7am to 330pm at a church for their Missions Sunday, and I... don't... know... what... kafi and sam... did. But it was good to just sit at home with Sam. He wanted to watch the movie "Spirit" on my computer, so I let him. Then he changed the language of the movie to Spanish, and he watched it in Spanish with English subtitles. All by himself. Four years old. I must say I felt pride. He didn't understand much, so I had to keep answering the question, "What are they saying?" But he picked up one word: "Cuidado." All on his own.

A friend sent me an article that is very good, but very sobering: "Cure is a Four-Letter Word." Read it if you choose. It really communicates what Kafi and Sam and I are facing. The gist is that there is still a ton that doctors do not know about cancer, so any conclusions must carry an asterisk. There are some doctors that are even hesitant to ever declare anyone "cured," but rather use the term "survivor" or long-term survivor. I'm glad I've got the article, though it threw me. It re-oriented me back to what we are facing. Because there are days when everything seems just fine. Just fine. Moving forward. And when we relate to Sam, we are raising him as if he's going to live to 80 and will be called by God to fill important things, and therefore we have to raise him well. He can't just get away with stuff like we let him during the first few months. But there are times when I feel ambivalent about the amount of attention our little family receives, especially when he looks good and roams the community. It's also hard for me to explain, sometimes, what it's like to have Sam in this situation, and the article really explains a lot (just imagine if you are reading that article and YOUR child has cancer). Please continue to pray for us.

day 69

2004-09-18T05:44:00.000-07:00

This is the 69th day since Sam was diagnosed with leukemia. Shelby is spending the night (spent the night; whatever; it's 545am). We got a bunk bed in the springtime in anticipation of the fact that Sam is old enough now to have his friends sleep over. Sure enough, Shelby is asleep in the top bunk. Yesterday Sam and Kafi went to Target, then Sam went to Aunt Shirley's for a little, then we picked up Shelby. This morning Kafi and Sam go to a class at Verdugo Hills Hospital on preparing your child for a new sibling. Challenge is, Kafi has a board meeting at the exact same time. No matter. A good leader can be in two places at once (that's a joke). I also have a board meeting. This afternoon is a party for Grandma Chavez's grandkids, the twins, at the park. We'll go there.

Kafi and I have almost completed a devotional book written by a woman while she had cancer herself. My friend Fritz in Richmond, Virginia sent it. It's been a good way for us to reflect. Yesterday a very well-meaning woman drove down my street, saw me, pulled over, and insisted on telling me that God was going to heal Sam. I said, "Well, God doesn't heal everyone. It's his choice." But she came back and looked me straight in th eye, saying, "God is going to heal him. Go look at all the verses about healing in the Bible. Read every one." I didn't want to get into it with her, so I listened politely. She is good people, and her heart is in the right place. So I let it pass. I expect Sam to be completely healed, but I also walk in 200% of reality, and that reality is that nothing is guaranteed.

Speaking of Sam's future, I got this nice email from Sandy Close of Pacific News Service. I've written for PNS in the past. A couple of years ago Sandy won a Macarthur Foundation Genius grant; not bad. After hearing that Sam had gone into remission, she wrote, "Maybe when he's ready to explore journalism he could join us here." Nice. I wrote my first newspaper headline when I was in eighth grade, and by tenth grade I was the news editor of my high school paper. Sam might have it in him. But I guess he should first learn to read.

I sent out an email to the Harambee list the other day, asking people to share how they pray for Sam. This morning I received this:

We started praying for you all since the day we found out about Sam. The kids at our center are very passionate and faithful about praying for Sam. There are many days i forget because i am so engrossed in praying for their lives, that are full of drama and trauma that i forget about the outside world. But not our kids, they keep keepin on, prayin for Sam. They mostly pray that Sam's shots won't hurt, that God would heal his body and that he wouldn't feel sick. They pray for baby sissy that she will be born healthy and ready to start her new life.

The woman who wrote this runs an inner city ministry in Lincoln, Nebraska.

Running with Sam

2004-09-17T15:40:00.000-07:00

Aaron and Andrea Ogle are up to seven miles a day in their training, toward the goal of running a marathan, in honor of Sam, to raise money for the Leukemia and Lymphoma Society. If you would like to be one of their financial sponsors (Kafi and I are helping sponsor), click on the button to go to a web page that explains it all.

not even knowing what we need

2004-09-17T09:07:00.000-07:00

I'm grateful to every person who asks if they can help us in any way. Often I'm stumped. The things we want most are somewhat intangible or very long term. Sam healed. The assorted conflicts in our lives resolved. Security. Patience. Endurance. A right spirit in all things. There's nothing like being pressured, feeling down, and then snapping at your spouse. I was snippy with Kafi yesterday; it was uncalled for; I apologized later. I love her very much, and I wanted to show her that I did. I didn't say anything, but I offered her a foot rub, and worked hard to pay attention (usually I drift off in mid-footrub). Kafi is a special person.

And Sam - well, he's been throwing up a little more. Twice yesterday. He barely ate anything, and didn't drink too much, but he seems ok, even buoyant. He played lots of Rescue Heroes yesterday, a computer CD. It's a little advanced for him, which meant that I had to pay a lot of attention. Hence the source of my frustration, because I was trying to multi-task. But I got re-oriented from the urgent to the important when I dropped off food for the Brown family. Father Eric Brown passed away a month ago, and his wife and kids are trying to make a life after losing the man who loved them all so very much.

I pray that today Kafi and Sam and I do things the right way. No matter what comes, good or bad, there is a good way to handle things, that when we look back we'll be glad we responded the way we did. Handling things well is hard. I'm not saying we have to force a brave face all the time; certainly we pull away, cry, hurt, be angry. But I don't want to lash out at friends and loved ones who are just that, friends and loved ones. So I pray for the strength to do what is loving and right, no matter the circumstance.

It's been really wonderful to just be a little family, too. I'm enjoying domestic routines. For nine of our ten years of marriage Kafi and I have lived in community with at least one other family, and for a number of years with two other families. Now it's just us, as it was during the first year of marriage. And it's all right.

I spend lots of time each day trying to figure out how everyone's prayers are being answered. Because I just have this sense that many are praying for Sam. I mean, I know from this blog and emails that many are praying for him. But what I'm saying is I can feel it in my spirit when I watch Sam, that something else is going on besides what I can see, and I am very grateful, and I want to know how and why. He's responded very well up until now, meaning few side effects, healthy spirit, and great test results. We expected a much more difficult time. How much of that is people's prayers for comfort and healing and mitigated side effects? Or is it just Sam, his own unique situation? And why does God do one and not the other? I like it when people write and share details of how they've been praying. That's encouraging. Meanwhile, we are just looking to God, again, and trying to learn his ways, his thoughts, and how he sees this particular situation. When I do that, things seem to go more peacefully, and in proper order.

side effects

2004-09-16T06:25:00.000-07:00

Sam experienced a few side effects yesterday. He threw up a few times, didn't eat much, and was fussy about odd things (odd to me - he just didn't want to take his dissolving medicine anymore; we had a hard time with it). He also stuck himself with a pen. Daddy was opening a box, and Sam helped me, using a pen to tear the tape, as he's seen me do on a number of occasions (often I just grab what's near, if it will do the trick). He did a few with the proportionate amount of strength. But then, as I watched, he pulled too hard, and up came the pen and stuck him below his eye. He's ok. There is a very slight gash. We called the on-call doc, they said Hydrogen Peroxide and Neosporin. He fussed when we added that, too. I gotta do a better job of teaching him about opening things, tools, etc. I'm home with him today. After spending Tuesday night with Aunt Shirley, Sam joined Mommy and Aunt Shirley for a pre-natal visit, then Kafi and Sam stayed home all day. So Kafi will go into the office and I'll be around with him. He can still move around the community, but we are keeping a close eye on his nausea and water intake, hence the expectation to be home today.

At dinner last night I read a section from the book of First Kings in the bible, 1 Kings 18:16-40. We had the intern house residents plus Florence at dinner with us, eight in all. The story was for the benefit of the adult interns. It tells how Elijah, the one prophet of the Lord remaining in Israel at a particular point in time, challenged 850 prophets of other gods to an unusual duel. During the story Elijah taunts his opponents, saying, "Cry out louder, maybe your god is on the toilet." We, the adults, laughed about that. I continued reading, to the conclusion, when Elijah wins and then slaughters his opponents. So I finish the story, we adults start talking about this amazing story, and then Sam says:

"Daddy, read it again."

I looked at him. He had listened closely. I didn't expect that. With his eyes he implored me. A second time he said, "Read it again." Hmm. That's one of those V-Chip bible stories; as my friend Derek likes to say, if we applied the V-Chip standard to the bible, there's a whole lot of stuff we would have to cut out (Tamar and Judah, anyone?) I told Sam we'd read it again another time.

These days, I'm not sure the motive, Sam insists on getting four or five books read to him before bedtime. I think this started with Grandma. Now Mom has picked it up. Call me Bad Daddy, but I'm not thinking about doing that. Maybe I'll read him The Manhattan Project or Soul of a New Machine or Fortune at the Bottom of the Pyramid; those, for Sam, would truly be bedtime stories; he'd fall asleep quickly.

But that might not work either. Kafi and I were once babysitting Brandon (who is now 12; he was 3 at the time) and I read him a section from Being Digital, hoping it would completely bore him and he'd fall asleep. No luck. The kid was wide awake, eyes wide open, when I finished a chapter. But he was quiet.

another good week ahead

2004-09-14T15:04:00.000-07:00

Just got back from City of Hope. Sam had another spinal tap, plus some vincristine. He's doing fine. The blood test for today says his ANC is 2.0, and the doctor said he's fine to move around as he has for the past few weeks. That's great news for all involved. I'm just amazed at how well he's doing. I don't want to spoil the no-hitter, so to speak, so it was hard for me to write that. But I'm just gonna say it - this whole experience has gone much better than we expected. We are grateful for God's tender mercies, and for the prayers and support of our family, friends, and you our blog-compassionates (you read this blog and suffer with us). Sam is at Aunt Shirley's house. She made him this big phat chocolate cake. He's in heaven, Kafi is taking an afternoon nap, and I'm... I'm...

I'm preparing for a committee meeting.

Such is life. I'm grateful for it.

last day out

2004-09-13T08:18:00.000-07:00

It feels like Last Day Out of Jail for me. I'm projecting onto Sam, because he doesn't even know he has a doctor's appointment tomorrow. We are both blissfully unaware; ignorance is bliss, they say. I'm catching up on email, and he is watching Dora The Explorer. We are sitting on the couch. In a few minutes I'll get up and get cracking on his routine (clean him up, wash him up, dress him, medicines both oral and topical, and, uh... feed him - but he's back to eating like a bird, so we'll see if he eats anything). He will visit Grandma Chavez this morning for a few hours. She's got some good grub; safe to say Sam will get his grub on this morning. Thank you to all who pray for peace for our family. Last night felt very peaceful.

Sunday in September

2004-09-12T17:16:00.000-07:00

Above is a picture Sam took at the airport when we dropped off Grandma. More photos, with some commentary, here.

I just returned from visiting a church called The Junction that meets on Sunday afternoons at Harambee. They prayed for Sam and our whole family, then presented us with some very gracious gifts. Thanks, Terry and Malcolm and all. Now Kafi is cooking dinner and we'll sit down to eat, just the three of us. Sam wants me to read the book Glasses of D.W. to him, so I'm going to jump off this update to do that.

545PM UPDATE: We read the book, and now we are watching Little Bill before dinner. Our next scheduled doctor's visit is Tuesday. Sam gets another spinal tap with chemo. The doc will check his blood count, and we'll see if he can keep moving around the community or if he needs to go into seclusion. This week his procedure is later than ever, at almost noon, because another kid is having radiation therapy, and they give a two hour window for radiation.

cheesecake factory

2004-09-10T17:21:00.000-07:00

I'm at the Apple Store in Pasadena. We are going to dinner tonight because it's Grandma's last night (for this trip). It's me, Kafi, Sam, Grandma, and Aunt Shirley will join us shortly. We are going to the Cheesecake Factory. We told Sam that Grandma was leaving very early in the morning (she's on an 8am flight out of Long Beach to New York) and Sam asked if he could come with daddy to drop off Grandma. We told him he would have to get up early and he said ok. He's been just fine, drinking enough, resting a bit (when he's not throwing a tantrum because he has to take a nap). We are grateful for this rather restful time. We will miss Grandma, but she will be back soon, in time for baby Sissy's birth.

815PM UPDATE: Sam made us listen to this song twice in the car. He said I shouldn't sing along because I'm not a good singer. "A mole, digging in a hole..."

checking on Kafi

2004-09-09T15:49:00.000-07:00

Kafi and I are going to the hospital right now. The obgyn wants to hook Kafi up to a monitor. She's been having light contractions for a number of hours. 801PM UPDATE: This baby ain't coming any time soon, according to The Doc. They didn't even register any contractions on their little printout machine at the doc's office. They just said Kafi needs to rest more.

close to baby #2

2004-09-09T06:28:00.000-07:00

Sam loves baby Sissy, as he calls her. He can't wait to meet her. Neither can we. Kafi had some mild contractions last night, so we may be sooner than we think. My prayer request: I don't know how to phrase it. We are doing our best to take care of family first, and rest, and yet we run the Harambee Ministries together. Yesterday was the first day of the school year and it was hectic. Plus Grandma returns to New York for a few weeks before coming back for the birth of baby. We are in for another challenging period as a family, with Sam's care, late pregnancy, new baby, and the daily pressures of keeping two organizations running. It's a lot. We have some very specific needs (I'm not going to mention them here, email me if you would like to know) that I believe will require some very specific responses. I don't want to limit God, but until I get a thunderbolt from the sky, I know what I think should happen. We just need God to provide.

A thought: What I've been thinking lately is that all that is guaranteed to me is Jesus himself. Nothing else is guaranteed. This season with Sam woke me up to that fact, because it is not guaranteed that my relationship with my son will be as I hoped. But neither is anything else. It's all up for grabs, no matter how much I plan or struggle or fight. But Jesus promised to be with me in all things, and that when I get on the other side he'll be standing right there (and I hope he's holding a mesquite chicken sandwich from Quiznos, jalapeno chips, and a lemonade). I like that scene from the movie Gladiator, at the end, where Maximus passes through, and he meets up with his wife and son. The music is beautiful (that's a CD I'm gonna get). I'm not giving a premonition of anything, just describing the images that comfort my soul at this point in my life. I watched The Passion the other night (thanks Aunt Shirley for letting me borrow the DVD) and I love the scenes, nearer the end, where they juxtapose images of the crucifixion with scenes from other parts of Jesus' life. Beautiful. And I think of what Jesus told his disciples about their ultimate destination: I go away to prepare a place for you, and if I go I will return, to take you back with me, so that where I am you will be with me, also. That's powerful. He says it at at least one other point in the gospels, I think when he is praying in John chapter 17: "That they may be where I am." I follow Jesus, and what he said, as an ultimate destination, was that he was working so that those who love him will be with him wherever he is. That's heavy. It's encouraging. And it helps me to refocus on what is important. Yesterday it was easy for me to get caught up in the minutaie of my job. But I came home to visit Sam, and he was sleeping in the bed, and I just watched him. I watched his back rise and fall with each breath. I listened: silence. He was so vulnerable, yet protected, at rest, and at peace. Sleeping. Being restored. That's what I want, for my son, and my wife, and yes myself, to be well. I praise God for the ways he provides these things.

Sam is still free to move around, and go places, and I don't know what he's got planned with Grandma. I hope they have a great day. One of the silver linings of this entire experience is that Sam gets to spend a lot of time with Grandma.

what the doc said

2004-09-08T19:49:00.000-07:00

I didn't report on the doctor visit yesterday. Dr. Pawlowska said Sam looks really good. He's getting stronger, appears healthy, and his blood counts were up. His ANC is 2.3, so she said he could have another week "about town." When it came time for his spinal tap he really really really did not want to go to sleep. Even after they gave him The Good Stuff he kept himself propped up and refused to lie down. Only after Dr. A gave him a second dose of Good Stuff did Sam lay back.

He's been with Grandma heavily for the past few days. Kafi and I have worked a lot. It was the first day of school today at Harambee Prep, where Kafi is the principal. I'm raising the money for the Harambee Ministries, so I gotta keep things in gear. We can't wait for baby girl to make her entrance, for many reasons. Sam has thrown major tantrums the past two days at naptime. Yesterday he screamed and hollered for two hours - yes, you read that right. Today he did the same, but not as long.

morning at clinic

2004-09-07T07:19:00.000-07:00

This morning Ma Mu and I take Sam to clinic for his weekly (under this round) spinal tap chemo. I pray all goes well and we are in and out quickly (which I think means 12:30, 1pm at the latest). The procedure is at 11. Not to alarm anyone, but I have a new understanding of how serious a spinal tap is. We have a friend named Coach Bumblebee who coaches boxers up at the Union Gospel Mission in Seattle. We saw Coach this weekend. He told us that ten years ago he was having a spinal procedure that went awry and left him paralyzed. Today he walks, because he worked very long and hard to recover his walking ability. I gasped when I heard his story. But then he said, "No, no, my spine was already curved in that space, and then the needle went in that spot. Sam's fine, his spine is straight." The point: The nurse professionals make it all look so easy, especially in the children's ward, so that kids are not alarmed. But the fact is that this stuff is very, very serious. And Sam has had four or five spinal taps so far, plus a few bone marrow biopsys. Plus going under anesthesia is never a joke.

With each visit to the clinic Sam is less fearful, but he's still fearful. We pray that he will not be fearful, and that he will cooperate with the nurses. We are thankful that the vomiting lasted just two days. His hair is actually growing. Hmm. His appetite has stabilized (Grandma says he's back to eating like a bird). Last night he slept in his own bed for the second night in row (he hadn't slept there since this whole thing started). Grandma slept with him, so he's still not all the way back into usual patterns, but getting there.

finished the medicine last night

2004-09-06T13:28:00.000-07:00

Sam is starting the third week of an 8 week chemo round. But he has no medicine to take for the next two weeks. It's odd. I take that back; we go in for a procedure tomorrow, I guess a spinal tap, and they give him meds during that. But when we get home, there is no more nightly chemo. Just the Nystatin swab and then Bactrim on the weekends. Nothing else. So I'm trying to figure this all out, because the doctor also said that by week three and forward he would start being a recluse again, with pretty low counts, but I don't see how that will happen since he won't be pumped up with a bunch of meds. So we'll know more tomorrow.

By the way, something dawned on me the other day. Sam has to take Nystatin three times a day. It protects his gastro-intestinal tract, from rooter to the tooter (so to speak). It turns out we will likely have to give to him for the entire duration of the protocal. Four years. Three times a day. No matter what. When I realized that, it threw me. Who takes medicine three times a day for four years? I don't know what to think of that. I had already gotten used to the fact that he has to take Bactrim on the weekends for the next four years, cuz that's just Saturday and Sunday.

Today Kafi and Ma Mu took Sam and Shelby to see an IMAX movie down near USC. In the afternoon we will go to Auntie Yoli's house for a labor day BBQ.

i don't know what to say

2004-09-04T21:10:00.000-07:00

Aaron and Andrea Ogle have decided to run a marathon together to raise money for a cancer charity, and they are running in honor of Samuel Job Mashariki Carrasco. I've never met them personally. They wrote about this on their blog. Click here to read why they are doing this. Funds raised will go toward the Leukemia and Lymphoma Society. This is beautiful. I'm going to contribute. If you choose, I encourage you to do likewise.