The M&M Story

This is a copy of a letter that I hope gets circulated to the masses. Thank you.... January 1, 2006 Dear Family and Friends, Happy New Year. A whole year of “new.” New friends, new experiences, new opportunities, new pains, new joys, and new moments to see God intimately a part of our lives. May I first begin by thanking you for the last nine months of support, love, care, encouragement, prayer, gifts (in all shapes and forms), and the walk alongside our family in the darkest valley we have faced thus far. It isn’t easy to watch a person you love suffer. But I can boldly say that in my limited, temporal mind, I think I get it now. Sort of. Suffering for the Kingdom is a blessed, beautiful, and humbling experience. And trusting, hoping, and believing in things unseen is the greatest investment ever made. As I approach this new era in my life, I’m overwhelmed by God’s love, grace, and provision for my family. As God unfolds His plan, though sometimes painful, I see His goodness, absolute...

Sunday morning. Brunch, communion, the buzz of children. I don't remember details; maybe someday I will, but I know it was a beautiful day. I remember frittata, cheese grits, music, coffee, kids outside, a smoky kitchen (bacon frying), a quiet Brian, and an angry self. Max had spent the night at my mother's house, his Nana, so he didn't spend this morning with his father. But how blessed we were to have the Parkers, the Belzes, and Lillian and Grayson all milling around my house. I remember feeling a bit anxious. Or maybe, more appropriately, alone. I was surrounded by friends and family, loving and serving in a terrifying time, but still, I felt incredibly alone. I'm sure Brian, in his quietness, would say the same thing, even more so. How I wish I could go back and slow down and just sit by his side and soak up his presence. Instead, I found myself making sure everyone had coffee and food and comfort. Not that I could fulfill all their wishes, but somehow that was saf...

I've thought many times over the last weeks about the privilege of saying good-bye to the man I love. Or more importantly, the opportunity to say, "Go Home. I'll see you soon." The last weekend of Brian's life compares to none. It was one of glorious beauty and precious grace. Our friends, Ben and Kim, were visiting from New York, and our house permeated of fabulous aromas (Ben is quite the cook) and buzzed of great insight and wisdom (Kim is, well, amazing). On Friday, the nurse came and was a bit alarmed that Brian had lost some weight, even though his TPN (IV nutrition) was pumping many calories into his system. After calls to doctors, she asked if we wanted Brian to go to the hospital. Argh! Hospitals. I looked at him, and I knew what the answer was. We both answered no, as weekends in hospitals are residents and often inept technicians (only from experience). Our thought was Monday. Ben had cooked all day, and a crowd of friends and family appeared by six tha...

I don't have it yet, but Brian's memorial service was taped and, I hope, will be edited at some point soon. If you would like a copy, please let me know. I should be able to make copies for family and friends. I also have a copy of his testimony last spring and prayer walk pictures. Please respond to this blog entry if you are interested. Include your address...even though I may have it. I can't promise when it will come, but I hope before Max graduates from high school.

B has begun to reveal his true talent. Today, he and I battled over where to put his smoothie. He wanted it on the couch. I wanted it on the table, away from the furniture. After several exchanges, I finally got him to put it on the table, and then he proceeded to dramatically throw himself on the floor and sob. I picked him up to console him and explain once more why the smoothie needed to stay on the table. He threw his head back in emotional sobs, laying his arms and legs all over me as I sat back down on the couch. But as we sat down, Piggy fell to the floor. B immediately stopped his crying monologue and looked on the floor and said, "thhhh??" (which is Piggy in B language). He slid off my lap, picked up Piggy, and went to play with his new megablocks. He's already working on that gold statue.

Last evening, M asked me to draw a picture of Tiger on his Etch-a-Sketch. Brian was the artist in the family and knew how to make most things actually look authentic. I, on the other hand, am all about interpretation. I took a deep breath and began to create something that looked more like an ink blot than Tiger. M: "That doesn't look like Tiger." S: "I know, buddy. I'm sorry. Daddy always does it better." M: "Maybe when we go to heaven, we could take this with us and have Daddy draw Tiger."

Since Brian's homecoming, M comes into my room early in the morning and tells me, "It's time for me to come in bed with you, Mommy." So he goes to get his pink pillow and Tiger and crawls up next to me. Some mornings he tells me he is sad and wants me to hold him. Other mornings he wants me to get up and play. This morning he said, "Mommy, I'm hungry. How about cereal?" A typical request for breakfast, with which I responded, "Sure, and how about a smoothie, too?" M happily agreed and then asked, "After that, can we have dessert?"

Today on the way home from Thanksgiving dinner, M composed a song that went something like this... Jesus, my daddy is in heaven with you. I'm going to heaven, but not yet. Jesus, me, me, me, me, me, Jesususususus. Later that evening, I broke out into song and B looked at me and said, "No." I then chose a different song, and he responded with another, "No." I asked, "you don't want momma to sing?" B emphatically answered "No." I guess he prefers his brother's singing.

Now that a couple of weeks separate my glimpse of heaven, the Maynor blog needs some attention. I'm a bit overwhelmed by this endeavor, as I do not have the gift of pen that my husband had. But there continue to be stories that need to be told, and I'm sure Brian would be very proud of me. (Though he may comment on my use of very, as it is a very bad word.) Brian's entrance into heaven was by far the most glorious, most amazing, most humbling experience I've ever had. Over the last months, the thought of facing death terrified me, and Brian, too. But, in that moment, it felt as though I was standing on this side of heaven, in my earthly, sinful form, saying "Good-bye. Go Home. I'll see you soon," watching the gates of heaven swing open and my Brian, my sweet, brilliant, gentle Brian, fall into the arms of Jesus. I'm sure he was singing hymns with us as he passed from this life to the next. And I bet the first thing he did was dance and run, two things ...

Jones bees and Princess Originally uploaded by Maynor . Great minds.... Bekah submits this picture of the JOnes crew. Lots of bees out this year!

Maynor Cousins Originally uploaded by Melanie Maynor . The two bees are mine. The not two bees are beautiful cousins. M chose to be a bee and wanted his brother to be one, too--probably because the costume looked so inviting in the closet. M was a bee a couple years ago, too. Who knows what intrigue bees hold for the boy? Perhaps we've watched too much Winnie-the-Pooh--he's always masquerading as a bee. In real life, he's a little frightened of bees. Perhaps the costume helps him confront his fears. In any case, A good looking lot.

The prayer walk on Saturday was slightly chilly, but a beautiful morning overall. Brother Andy pushed me in the wheelchair, and people prayed and talked and sang. I would guess there were about 100 or so people there. Thanks to all those who showed up, and who prayed in their own homes. It's always good to see God's people come together in prayer, and such a visible picture on Saturday was inspiring.

This week represents cycle #2 of chemo. SO far, so good. Yesterday I was infused with adriamycin over 24 hours, and tomorrow is taxol. Steroids and super nausea drugs help out this week, and we've also got new strategies for the next few weeks. Last cycle I crashed pretty hard for the twwo weeks following treatment, partly due to dehydration and lack of nutrition. This time, we're starting with TPN tomorrow, which is intravenous nutrition and fluids. It's about a 10-12 hour infusion, I think, that I'll do overnight. That will take some of the pressure off eating, and will help me stop losing weight. I'll also get steroids twice a week on the off weeks. It's not good to take them constantly, but this regimen should help out with energy and appettite without doing harm. These are both things that we prayed about and were ready to argue for, and the doctor brought them up himself. He was very open to our concerns on Monday. So we're optimistic about my response...

Here's information on the Prayer Walk this Saturday, put together for us by our friends. Come on out! If you can't come out, please pray with us at the same time: This Saturday, October 22 at 8:15 a.m. at Kircher Park, CTA Cares (an organization devoted to assisting with medical costs for those in medical crisis) will be sponsoring a walk to benefit the medical needs of Brian Maynor and family. For more information about how you can be involved, please contact Amy Darr at 314.578.2280. DIRECTIONS TO KIRCHER PARK: From Big Bend, take I-44W (go 13.9 mi)…Take exit 264 & turn left on MO-109…Take I-44E (go .7 mi)…Take exit 265 to Williams Rd…Kircher Park is at I-44 and Williams Rd.

Here I am up coughing once again into the night. Please pray that these coughing fits go away....argh!

I had a hard day yesterday throwing up, mostly in the night, and Peter had to take me into the hospital today to be rehydrated. I am home now, and feeling a little better--Im not nauseated, and I'm drinking fine--I'll see about eating in a little bit--I have had some snacks today. I've got to really be on guard for dehydration as we go forward--I think mild dehydration has been part of my fatigue, et al. So please pray against that, and pray that we have some wisdom in knowing how to combat it. All my blood levels are good, so that's a good sign for overall health. But that means we can't blame all the fatigue on chemo--that it must be some dehydration and other things like the shortness of breath. The shortnesss of breath is another question--some of it can be blamed on the lung damage, some on dehydration, some on the disease. Not much of it can be blamed on the chemo right now, according to the nurse who did the bloodwork today. But chemo can affect breathing, so...

bald andy Originally uploaded by Maynor .

Last night Becca and her kids were over, and Millie is three, the same age as M. Millie was seated, eating her gingerbread, supposedly minding her own business. M was trying to get Susan's attention, but Susan was ignoring him because she was in the middle of a conversation. M was persistent, but unsuccessful: M: Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. Mom. From across the room, Millie had some golden three-year-old advice. Millie: YOU NEED TO PULL HER SHIRT.

I've been hit pretty hard with fatigue and shortness of breath this week, but it seems to be getting better. It was expected. We also got oxygen delivered a couple days ago, and that has helped me catch my breath more easily. Chemo damages red blood cells, which carry oxygen, so that combined with my already damaged lungs has not made it easy. But perhaps today we're on an upswing. From Isaiah 43: Do not fear, for I have redeemed you; I have called you by name, you are mine. 2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. 3 For I am the LORD your God, the Holy One of Israel, your Savior.

IM000319 Originally uploaded by shmeliot . And the New Yorkers have joined in. I love you guys.

maynor boys Originally uploaded by kwparker . There's a whole hilarious set of shaving photos by Kelly on Flickr. Just click this picture and you'll go to her set.

Head Shaving 010 Originally uploaded by Maynor . My hair's going to fall out this week, so we decided on a pre-emptive strike. We had dinner at the Parkers' on Friday night, and I planned to have Todd shave my head while we were there. The other guys then decided to join in for support. You'll never find a more dedicated group of buddies. (picture by Melanie)

Post-shave Originally uploaded by Maynor . That's Andy, Todd, Peter, me, and Aaron. And yes, they all have jobs.

Infusion #1 is complete (the Adriamycin), and I'm headed into the hospital in a couple of hours for infusion #2 (Taxol). It's going to be a good day--my buddy Mike Smith is taking me to the hospital and hanging out for a while, and then my brother Peter is coming to watch the beginning of the Cardinals playoff game (it's a four hour infusion). Between visits, I'll listen to my new iPOD as I reread The Chronicles of Narnia to get ready for the big movie this Christmas-- The Lion, The Witch and The Wardrobe looks like it's going to be a good one. So far, I'm feeling pretty good--better than I have in weeks--but I am pretty hopped up on drugs, so that helps. The drugs are just for this week of infusions, so the nurse says I sould enjoy this while I can--next week will be worse. But it's all part of the process, and I'm learning (slowly) to embrace the process, all its ups and downs. For now, I'm adding songs to my iPOD, so I've gotta go. Thank you ...

So the IV nurse showed up about 7:00 pm, so I've been on chemo for about an hour and a half. My hair hasn't started falling out yet. It's still luxurious. Male pattern baldness doesn't run in my family--luxurious hair does. So I'll be the second bald guy in our family--my brother Allen shaved his head once in college. He looked pretty good, but at the time he weighed about 60 pounds more than I do now. I remember when I had long hair in college and cut it before graduation. I got a little weepy. Back then I NEVER cried, so it was a big deal. But for the last ten years or so, I've been a little more in touch with my emotional, sensitive side, and I tear up in church, or at a good story, or when my 3-year-old goes poop on the potty. I haven't cried at a Hallmark commercial yet, or at least I'm not going to admit it. Some of those Volkswagen commercials, though--you've gotta admit they're poignant. All the Men's Men writers I've read, though...

Well, it's almost 5:00, and my "hour-long" appointment was set up for 8:15 this morning. I'm at home, but I still haven't received the actual chemo drug. The Home Infusion nurse should be sometime soon to hook me up. This morning I did get lots of pre-drugs (for nausea and red blood count) along with antibiotics. They just weren't ready with the chemo for some reason. God provided the best nurse possible this morning--Renee. We were there for about three hours and she spent quite a bit of time encouraging us and explaining the process in depth. She explained why I would feel fatigued, for example, and gave us more details on what to expect over the next two weeks. Overall, she was bright and knowledgable and a good teacher--just what we needed today to feel confident. So we still wait for the big drug thiss evening--I'll be hooked up to a fanny pack for the next 24 hours, then on Thursday I go back in for a four hour infusion of the second drug. I've ...

Please pray for us as we start this new type of chemo tomorrow morning. I'm still pretty fatigued from the pneumonia, so this may just add to it. Pray that side effects are mild and that we stay hopeful. Pray that we feel God's hand in our treatments. He promises that if we pray for it, he gives us wisdom and he lights our path. We feel like this is the right thing to do, but it's still a little scary. Finally, keep praying for complete healing, and that God be glorified through the process. Love to you all....

Let's see....I'm still recovering from the lung damage caused by pneumonia. I'm finished with the antibiotics (thank goodness--I was tired of hooking up an IV five times a day!), but I'm still dealing with some coughing and shortness of breath, combined with weakness and fatigue. But I'm moving around a little more each day. I start a new chemo regimen on Tuesday. We visited the doctor this week, and he thought we should avoid the original drug. There were some liver issues, along with the fact that the cancer has progressed a bit. So the new regimen includes the drugs Adriamycin and Taxol, and should be a little more toxic than the original drug, but I've got heavy duty nausea drugs ($100 per pill!! paid for by insurance) and should deal mainly with fatigue. I'm tired of fatigue. I'll also lose my hair in a couple weeks, which should be an odd experience. SEND HATS. I could use this time to purchase some wigs and try out different hairstyles. See if I w...

Recently, when a country or folk song comes on the stereo, M says, "That's a farmer singing that song."

Today, on the front page of the metro section, there's an account of his scooter adventures. At 70 miles to the gallon, it's a good thing he got it back! Click here for the story.

september'05 086 Originally uploaded by Melanie Maynor . Three-year-old cousins at the balloon races last week. This photo and the butterfly cake courtesy of Aunt Mimi's flickr photostream....

Lillian's 3rd birthday cake. Originally uploaded by Melanie Maynor . We're heading over to a Bugstravaganza after naptime. It's a bug party. What else could you want at three?

M: Mommy, have you ever had chocolate in cranberry juice? Mommy: No, I haven't. M: I have. It's yummy, yummy. Mommy: Really? Where did you have it? M: In a restaurant.

M: "Dear Jesus, thank you for my chocolate milk. It's really yummy."

This morning M looked at me and said, "You need a hair trim," and then went back to eating his cereal.

Sorry about the lapse in blogation. After another week in the hospital, I've been back home a week, but haven't been up to much. I'm self-administering IV antibiotics, and seem to be gettting a little better everyday. Keep praying for recovery from this pneumonia/lung damage. Kiddos are doing well. M has almost figured out the whole potty thing. Number 2 is about 90% there. So I guess that makes it about Number 1.8. Meanwhile, we reaced a particular goal (six successful poopers) and celebrated with a Potty Party. Cousin L came over and we had popcorn and pizza and watched a movie. We had rented A Bug's Life , which turned aout to be a mite scary for L and B. We turned it off and watched Peter Rabbit. M, however, watched the rest of A Bug's Life the next day and LOVED the scary parts. He keeps telling us his "favowite parts are the scary parts with the gwasshoppers!!" Still, we'll try to keep such fare to a minimum. I've been reading John Eldredge...

Brian was hospitalized on Tuesday for dehydration, following five days of fever related to pneumonia. I'll let him write his story when he returns home, but he did make a big production in the waiting room and passed out, causing the bigwig doctor to come running to revive him. So they put him back in the hospital. The doctors have spent the last couple of days figuring out why Brian's recovery has been so slow going. They found an abscess (not absolutely confirmed yet, but most probable - apparently it takes hours, sometimes days to get CT reports) in the right lung near the pneumonia. An abscess is a pocket of fluid caused by infection. The pulmonary specialist explained his theory on the slow recovery. He suspects that tumor is blocking a normal blood flow, which limits the amount of antibiotic that reaches the infection. Their first strategy is to up the anitbiotic to a high dose, hoping that enough will get to the infection and clear it up. They will watch it until...

I was trimming my eyebrows this morning when M walked in to tell me breakfast was ready. He turned around and yelled to Susan: "Daddy can't eat breakfast! He's cutting off his eyebrows!!"

I've still been weak and coughing from the pnuemonia, although its been getting better everyday. Today I went in for a blood check, an appointment with the medical oncologist, and possible treatment. My liver levels are getting better, and should be within range next week to take treatment. They think it might be a dosing issue, so they'll just reduce the chemo dose next week and watch levels. My oxygen levels are good, and my immune system's at a pretty good place. In the meantime, it turns out I'm anemic, and was about 2-3 pints down. So that's a huge reason for my fatigue. They gave me a transfusion of 2 units of red-blood-cell-rich blood, and I feel a whole lot better. I'm at least 60% of my old self! They've also started me on a drug called Procrit, which is an anti-anemia drug. So I was at the hospital for most of the day, but I feel much better, and we'll see how it goes. We're just praising God that this fatigue was something that could...

It's good to be home. I'm not up to doing any jigs yet, but the pneumonia's under control and I haven't had fever for a couple of days, so they let me out. My liver function levels were up for some reason during most of my weeklong stay, but they are declining now (which is good), and they think it's medication related. It does not seem to be cancer related. Thank you for all your prayers for our family--we know God listens to his children, and he acts. More later....

This is Susan updating Brian's blog. Brian was admitted to the hospital Saturday because of severe dehydration and pneumonia (that darn right lung). He is somewhat better but will remain in the hospital until at least tomorrow afternoon. Please pray for healing.

M: "You used to be a little boy, and you grew up to be my daddy."

"'Member when there was no wectricity in the wights and we fwashed the wight on the Wion book so we could wead it? That was funny." Translation: "Remember last night during the blackout, when we used the flashlight to read The Lion, The Witch and the Wardrobe ? That was funny." The electricity was out for about twenty hours, and when we got home from church, M was very excited to find out that his lights, CD player, fan, and white noise machine all worked again.

Well, it's been over 48 hours since the first infusion, and I feel just fine. Next week I'm bringing handpuppets, though. There are five chemo rooms, and they each have six recliners or beds lined up on the walls, three per side. It's a setup just like in Curious George Goes to the Hospital , when he swallows the puzzle piece, but of course he's in the children's ward. There was even a grumpy patient who got testy with the nurse when the nurse opened her package of crackers for her. "Don't open it," she said condescendingly, as if opening the crackers was soooo inconsiderate. And after the nurse left, she kept complaining under her breath. George's friend Betsy is grumpy in the hospital, too, and only cracks a smile when he performs a puppet show using both hands and feet. And then Betsy finally laughs when George races down the ramp in Billy's wheelchair, and crashes into the Mayor. I didn't have any puppets with me, and I couldn't c...

B is getting serious about his personal rights, and he's a little jealous that M gets to rotate between underwear and pullups. Tonight B INSISTED* on wearing the following, listed here from the inside out: 1. Diaper 2. Underwear 3. Pullup 4. Pajama pants. He definitely had some junk in the trunk. *And yes, a one-year-old with limited vocabulary can insist very effectively, using adamant hand motions, growls, grunts, and yanks.

#1 (after peeing in the little potty) M: Can I name it, daddy? D: Your pee? M: Yes. D: Whatever, dude. M: It's name is Goopy! Can I pour Goopy in the big toilet? D: Absolutely. M: Can I flush Goopy now? D: Knock yourself out. M: Bye, bye, Goopy! Byyyyyye! #2 M: Daddy, do you ever poop on the wall? D: Um, no. M: Are you sure? D: Pretty sure, yes. M: You've NEVER pooped on the wall??? (shakes his head as if he can't believe it) Never EVER???

Okay, so I start the next phase of treatment on Tuesday. This week I've gone through screening, which basically means having my blood taken a few times and being quizzed on my aches, pains, and number of visits to the potty I make per day. Tuesday I'll go in at noonish and have my blood taken again, then get a shot of Benadryl, then half an hour later, start an infusion of Rapamycin (Rapamycin has been manufactured in several forms--this particular form is known as CCI-779). It's an mTOR inhibitor. mTOR stands for "mammalian target of Rapamycin," which seems redundant, but what the hey. It has something to do with cell growth and reproduction, and some kinases and proteins and whatnot. It confuses me, and I'm a medical editor. Anyway, the infusion of CCI-779 takes about an hour, and then I'm done for the week (except for a quick blood draw on Wednesday). CCI-779 is a clinical trial drug, so we're not sure just what it will do, but if we don't have ...

Two things to consider: 1. In Story , Robert McKee's screenwriting philosophy book, he says the hero of the story must be kept from his goal at all costs until the end of the movie. Just as he thinks he's within reach, it must be yanked away again. Otherwise, it's a boring, boring story. 2. Frequently, the three-year-old that goes to sleep for a nap is not the same three-year-old that wakes up two hours later. The toddler of 7:00 am to 1:00 pm is a cooperative, motivated, happy child. The toddler of 3:00 pm to 7:00 pm is a crazy, crazy person. All that to say, potty training did not go as well this afternoon as it went this morning. He woke up with dry underwear and received hugs, kisses, and a chocolate chip. But we went outside to play and soiled a couple pair of underwear within 15 minutes. Now, there is a difference between one's outside potty habits and one's inside potty habits, so we take heart that there has not been an INSIDE accident all day. But still, it...

Naptime Originally uploaded by Maynor . You probably have not have had time yet to read the entry below, but I just checked on him, and this is what I found. He didn't get very far nto his stack of books. Of course, 1001 is a lot of Things to Spot Long Ago. I can see how one might fall asleep in the middle of that book, especially after a long morning of potty breaks. No word yet on dry vs. wet soccer equipment undies.

Several more visits to the loo today. I actually got teary-eyed during one of his colon moments*, and not just from the smell. The little dude's growing up. He did have one accident this morning, but it was his first time out of the house today, and it was drizzling rain at the zoo. And really, who among us hasn't been tempted during a drizzle in August? It's wet, it's warm.... It's rest time now, so he's reading books in bed, in UNDERWEAR. Little briefs with soccer balls and cleats all over them. So this is a big test. But he did #3 (1 + 2) before his rest, so we're crossing our fingers.... *my (hilarious) wife's favorite euphemism. It's even more icky than the real word, don't you think?

After months of stops and starts, today might be the day. We've been to the potty five times in a row, including both pee and poop. Two poops in fact. We've never pooped on the potty before now. This is big, folks. Real big.

"I love to work, work, work. That's my favorite stuff to do."

Originally uploaded by Maynor .

Originally uploaded by Maynor .

Having cancer these days carries with it the hope of a cure in the next few years. Cancer research really is moving faster than it ever has, and the National Cancer Institute, funded by our government, has a goal of ending all suffering and death from cancer by 2015. It's cool things like this that might make that happen: "A nanocell that can burrow into a tumour, cut off its blood supply and detonate a lethal dose of anti-cancer toxins has been developed" http://news.bbc.co.uk/1/hi/health/4715739.stm

Niece Lily turns 3 in September. Her prayer last night: Dear Jesus, Heal Uncle Brian! Amen. Amen to that, my sweet niece, amen to that.

Good news from New York: Dr. Bob Maki, the sarcoma doc here, thinks we're on the right track with treatment. He's encouraged by the good results Dr. Adkins (St Louis) has had with the adriamycin/taxol (chemo) combination in the past, and so he would recommend following that track. But first, he thought it might be a good idea to enter the Rapamycin clinical trial and see if it works. Rapamycin is another form of chemotherapy, and it has had some interesting effects on sarcoma (like bone tumors) that have not responded to traditional means. It would have the same side effects as the other chemo (nausea, hair loss) but they may be milder. If I am to enter the trial, I have to try it before any other chemo, so we'll try it for eight weeks and see what happens. If it works, then great! we'll stay on it. If not, we can switch at any time. My St Louis doc suggested this trial, too, so he can administer it there. The fact that the tumor shrank so much during radiation has give...

fun with tupperware Originally uploaded by Maynor . M is a performer, but B is the comedian.

Lil' Cousin Lil Originally uploaded by Maynor . Brother Pete's gonna have a field day with high school boys in a few years.

Apologies to those who have received this update in another form, and were looking for something newer and wittier here... This morning we heard from Dr. Bradley, my radiation oncologist, who met with three surgeons, three medical oncologists, and a radiologist last night. In a nutshell, my surgeon (Dr. Patterson) is strongly opposed to surgery. He feels like the spot on the left lung (the "good" lung) is tumor, and so to do a proper surgery, he'd have to take out the right lung AND dig around quite a bit on the left. You just can't do surgery on both lungs at once and expect the patient to survive, he said. The radiologist did say that the multiple "nodules" are so tiny that we shouldn't be concerned--that they could be almost anything right now. So that seems like a solidly closed door at this point. We've been praying for God to direct our paths, and that's about as clear a direction as we can get. All involved in the meeting were strongly in ...

Okay, so some good news and some so-so news. The big tumor on the right side has shrunk by half so far, and may shrink more as radiation effects continue over time. There's a big grey area on the CT scan that is a lot smaller now than it was two months ago. Hallelujah! The little grey spot on the left has shrunk some, but it's still there. We were hoping it would be gone so that the surgery might be a stronger option. And there are a few small spots that could be nothing, could be something. So all in all, we don't know much more than we did this morning as far as treatment options. The surgeon and the radiation oncologist were to talk tonight and I'll hear tomorrow whether they recommend surgery (right lung removal) or not. We also heard today a couple of options for chemo--one of which is an experimental drug (an mtor inhibitor). The other option would be a combination of adriamycin and taxol. Apparently my oncologist has had a lot of success with sarcoma and that com...

Pre-haircut comb-over Originally uploaded by Maynor . The B-man lost his comb-over a couple days ago. He also lost his mullet. Here's hoping he'll have neither one for the rest of his time here on earth.

Potty update: Last week M sat on the potty almost nonstop for two days, and peed once. Well, once on the potty. Anytime he got up and put on one of his 12 new pair of underwear, he'd pee. After two days of this, we went back to the drawing board. Our friend Marjorie suggested letting him run nekkid outside and "water the grass"--which worked for her son--but it's 95 degrees and VERY humid, and it wasn't very pleasant--even when nekkid. The pediatrician suggested the following technique: "Hey, kiddo, when you pee three times we'll go up to the QT and you can pick out whatever you want!" The QT?? QT is a gas station. Besides that, knowing M right now, I wouldn't trust his choices anywhere. So if you have any good suggestions, and they don't involve walking up to the nearest gas station and picking out some beef jerky or cigarettes, hit that "comments" button at the bottom of this entry and let's hear it.

Today we've been waiting on results from the post-radiation CT scan, and we've also been praying for my cousin Wendy, who had surgery today to remove a brain tumor. Our prayer today has been from Philippians 4-- Rejoice in the Lord always, and again I will say it--Rejoice. Let your gentleness be known to everyone. The Lord is at hand. Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus. I love "the Lord is at hand." One of the things that makes God's peace so incomprehensible is that it blossoms into an even more amazing joy. And to have a heart filled with joy and guarded with peace--how incredible is that?? A week or so ago, we visited Grace and Peace, Peter and Melanie's church, and we sang "We come, O Christ to You"(okay, G&P uses "Thee," but I'l...

Daddy: Hey, M, what are you doing in there? M (from other room): Please don't ask what am I doing in here.

Lest you think, dear reader, that M&B are perfect little angels, I'll clear that up for you right now. M has been pushing every button he can, stretching every rule, and sometimes openly defying mommy and daddy. We've had a rough week. Yesterday, for example, our friend Amy was taking care of the kiddos while I was in the back room. M threw a fit when she told him he couldn't throw the pillows off the couch (a rule with which he is already familiar). I took over for a couple minutes as the heavy, but as soon as we went back to the living room, he walked straight over and pulled off the pillows again. He and I went back to his room for a few minutes and he seemed okay, but when we walked back to the front room, he blocked the door so I couldn't enter: M: Daddy, please leave the living room. D: Do you want me to leave so that you can disobey Amy? M: Um, Yes. Later, during his "nap," he took a poster out of its frame (a big, very old, very cool Los Angeles po...

Nothing much to report today except for the fact that my sister-in-law cooks a mean crawfish pie. Tonight's Louisiana cooking made gaining that 30 pounds back look easy, y'all.

"Once upon a time there was a shoe. And he wanted to live in a sock! So he asked the sock if he could live there, and the sock said 'yes.' So the shoe lived there and they went on 'ventures. The End."

Daddy: Want to go to Kinko's with me? M: Where did you say we are going? D: Kinko's. M: Did you just make that word up?

This morning was my 32nd and last radiation treatment. Hallelujah! I go back in a couple weeks for a CT scan to see just how effective the treatment was, and then to make decisions about the next step in treatment--surgery, chemo, or some other undetermined option. We'll probably also head up to NYC to Sloan-Kettering for a second opinion. But for a couple weeks, no doctors, no daily visits to the hospital. I would have made a comment about the unique smell of the radiation lab--kind of a shower-fresh, medicine-y smell--but I recently realized that that particular smell I associated with the radiation lab was that of my deoderant. See, I lay on the machine on my back with my arms above my head, and voila--deoderant smell. I know, it's not something you want to be reading about this afternoon, but it's true. I'm going to purchase some different deoderant now so that I don't go around on hot days being reminded of radiation. Anyway, now we're off for the weekend w...

Today at lunch M came in to the kitchen in a terrible mood. Susan had fixed him a turkey cheese sandwich and cherry tomatoes and he turned up his nose. "I want Peanut butter and Jelly sandwich," he whined, and then hung his head in a dramatic pose. He crawled up in his chair, but kept complaining and being as grumpy as he possibly could. Susan asked him to pray, and he refused, but pointed to Uncle Stephen. So Uncle Stephen prayed for the food and the day and a few other things. After Stephen said "Amen," and before we had a chance to raise our heads, M piped in: "Dear Jesus, Tanks you that I'm not going to be sad anymore. Aaaaamen." Then he smiled and took a big bite of his turkey sandwich.

Jake (28) and M (3) are playing in the living room. M is on the sofa looking out the window. M: Somebody's walking down the street! J: Where are they going? M: It's just one person. J: I know--where are they going? M: It's just one person! J: WHERE ARE THEY GOING? M: IT'S JUST ONE PERSON! [pause] J: Is it a boy or a girl? M: A boy. J: Where is HE going? M: To his house.

When I was in the hospital, M told our friend Jake that "Daddy's the man to ask for stories." And he does ask, sometimes several times a day. Usually it goes like this: M: Daddy, tell me a story? Daddy: About what? M: 'bout me and Tiger and Cousin L [or another group of people or objects] goin' on an 'venture. Today before his nap, I told such a story, this one involving M, Cousin L, and Best Friend C. As usual, they packed their backpacks full of all kind of stuff that you need for an 'venture, including sleeping bags, swords, sticks, flashlights, and food. After some run-ins with big trucks in the woods (a late addition to the story by M), our heroes stood at the foot of a great mountain. Daddy: So M, L, and C stopped and had a picnic at the foot of the mountain before they made the ascent. M: And the Journeys. D: Who? M: The Journeys. They were at the picnic, too. D: Who are the Journeys? M: Our friends. You said. D: I did? M: Yes, you said we each bro...

Every morning my radiation technicians, clad in long white coats and medical gear, set me up on the machine and mutter numbers and instructions to each other over my naked chest: "Gimme a line." "4.6 minus where we started..." "Twist him just a bit." "About half a line." "4.2?" "Yeah, 4.2." "Alright, let's go." They're very serious, but also quite nice. Anyway, Susan and B and I were in Target last week and ran into Radiation Technician E. Not only was E not wearing her lab coat, but she was purchasing a bikini. I now know what my students felt like when they would run into me at the mall. Although to be fair, I've hardly ever been seen buying a bikini.

Lost Shoe Originally uploaded by Maynor . We were in Tampa a few weeks ago for my brother's wedding, and when we got to the mall to pick up the tuxes with Pete, Mel, and all the kids, we could only find one of Susan's shoes, which she had kicked off in the van earlier. We retraced our morning steps over all of South Tampa, and finally discovered the lost sheep at the filling station. Do you see it?

I'm going to try to start blogging again. I think part of me was waiting until I could go back and journal about everything that's happened since March 11, but that's just impossible at this point. So we'll assume that you are generally caught up. If not, feel free to e-mail me at the address at the top of the page and I can give you a quick rundown. In a nutshell, here's where we are at this point in terms of treatment: I entered the hospital on March 14, 2005, and a CT Scan showed a large mass in my pulmonary artery. The VQ scan showed no perfusion in my right lung and about 20% perfusion in my left (perfusion is the gas exchange--get rid of carbon dioxide, add oxygen to blood). I was on blood thinners for two weeks because the doctors thought it was probably an embolus, but surgery on March 27 proved it to be a sarcoma (a rare soft-tissue tumor). Drs. Marc Moon and Alec Patterson cleared the entire left artery (it was not connected on that side and "flopped ...

Boys at water park Originally uploaded by Maynor . During Uncle Andy's wedding weekend, we spent some time at the Tampa Aquarium/Water Park. B LOVES water, and M is okay with it once he gets used to it. M had a great time shooting the water cannons on this boat--you could shoot them at other kids, and M did not like being hit at all at first. Soon, though, he bowed his head into the spray and held down the trigger, shouting "I'M THE CAPTAIN OF THE SHIP!!"

Ringer Originally uploaded by Maynor . Here's the ringbearer from Uncle Andy's wedding a few weeks ago. Lots more wedding pics over at Flickr. Check 'em out!

DSC00009 Originally uploaded by Maynor . Hey, what is that? See closeup below.

Handy Bark Shelf Originally uploaded by Maynor . That's a golfball and yesterday's chewable vitamin.

Hey, wait.... Originally uploaded by Maynor . If it was good yesterday, it must be good today.

Hi folks! New posts coming soon ... really! Updates on kids, as well as the other developments in our lives. For the time being, check out Flickr.com for recent pics (click pics to the right). -B

DSC00021 Originally uploaded by Maynor . And uncle stephen and g-daddy and hunna and gran-nan and aunt linny.

DSC00014 Originally uploaded by Maynor . M (not pictured) is waiting to field this hit.

DSC00017 Originally uploaded by Maynor . No need for 'roids when you've got this kind of heart.

DSC00017 Originally uploaded by Maynor . No need for 'roids when you've got this kind of heart.

DSC00022 Originally uploaded by Maynor . Music, literature, art supplies, Tiger.

DSC00004 Originally uploaded by Maynor .

So it's March, which means it's gray and chilly in St Louis, and has been for four months. And M is still hacking like a 75-year-old smoker. So we've been inside a lot. And there's still three months left of school, and thirty years left of work. So if we're a little grumpy with you, we apologize, and please be patient and also pray for some sun. The early bulbs are starting to peek through--please hurry, bulbs, hurry!

M has been sick since Sunday, and has to stay home from school today. Still, he insisted, "My not sick anymore, mommy!" The fever and the constant hacking belied that optimism, though. He wasn't allowed to kiss B this morning because of the fever and the constant hacking, and the kissing restriction made him sad. So for the next hour, he repeatedly reminded Susan, "Mommy, you made me sad." First we had some gentle talks about how nice it was to be able to express our feelings, then we had some gentle talks about the how mommy makes us happy a lot too, and then we had some gentle talks about how he's making his own choice to be sad, and then we had some not so gentle talks about how he needed to move on already.

DSC00020 Originally uploaded by Maynor . He's just turned it on. That's why he's so happy. Big brother's still a little nervious around vacs, but not B.

DSC00011 Originally uploaded by Maynor .

DSC00007 Originally uploaded by Maynor . Lots of smoke, no fire. We've since given up for now, and will wait for renewed interest.

100_0145 Originally uploaded by Blogmedic . Here's another plug for Andy G's pictures on flickr.com. He puts them up about once a week or so. Click on the pic above, and sign into flickr.com if necessary. Andy also keeps a blog at www.blogmedic.com.

Last Thursday, B suddenly started saying Da-da. Since Thursday, he's started waving (and sometimes saying) bye-bye, and saying Maaaa (for his big brother), and uh-oh. All in three days! B had gotten a little low on the weight chart (he was sick, and then started crawling) so we’ve been feeding him calories galore for the past week—-maybe chubbiness is the key to verbal brilliance!! At this point (10-11 months) M was about to say his first words (yellow, banana, mama) and then forget them and all other words for another six months. Like his verbal groundhog had seen his shadow and disappeared. Come to think of it, M was the King of Chub, so that’s a dubious connection. Maybe the key to verbal brilliance is front teeth. B sure has those.

(crossing his arms, pooching out his lip) My mad to you, daddy.

1. Amen, Aaaymen, AAAymen, ABCDE, ABCDA--men, Aaamen, ABCDE, ABCDAaaa--men 2. (upon bringing me a laundry basket like the one that he was wearing) Our have two baskets on our heads Our have two baskets on our heads Our have two baskets on our heads (repeat while marching around the house)

Another hour on the potty last night, and nothing but toots. Then it was bedtime, and sometime during the night the dam burst. Thankfully, Tiger was there to help clean up the mess. "Greater love hath no tiger than this, that he lay down his fur for his friends." Tiger, a very good friend, is in the wash today. And I'm considering a slightly different strategy of potty training.

It's been a while, but I'm newly determined. There's lots to report, and here's a quick rundown. I'll go into more depth over the next few days. 1. B is crawling everywhere, and pulling himself up--mostly on the Fisher Price garage. Apparently he's been dying to play with the matchbox cars for months, and now that he can control his location, he goes straight to the cars and garage everytime. 2. B also had Fifth Disease a couple weeks ago--it's like a rash and a cold. I'ts one of those childhood viruses like the Chicken Pox. It's real name is ERYTHEMA INFECTIOSUM, but that's too hard to say. It's the fifth disease on the official list of six childhood viruses--thus the name. [UPDATE: The Doc now says she thinks it was a different, sort of similar, virus.] 3. M has decided he's ready for potty training--was it a week? two weeks ago? Anyway, it means sitting on the potty for long periods of time waiting for something to happen. So far, we...

The B-man is crawling everywhere! I'd explain more, but we're too busy baby-proofing the house! No time to type!

andy Originally uploaded by emmegab . Via Jenny: Anyway, just a quick prayer request from [Andy]. With the elections on Sunday, there has been a regimental order for a post-wide prayer service at 8 p.m. Saturday night. If you think about it, won't you please take a few minutes on Saturday (noon, EST) and join with them? I am confident that God can do miraculous things on Sunday, and will be praying to that end.

1. M: Stummy --where food goes when you eat it (stomach + tummy, apparently) 2. Last week Cuz L looked at the sprinkling of freckles across her Aunt Susan's nose and said: " Polkadots!"

We've been encouraging potty training, so we've been fairly open with our own, umm, potty habits. This morning I was enjoying some solitude of my own in the bathroom, and M walked in. "Oh, hi. You read one of my books, daddy?" Before I could say "no, thanks," he walked out. 15 seconds later he was back with a thick book of nursery rhymes. "Here you go, daddy," he said as he plopped it on my lap and left, closing the door. So next time you visit our house, you may want to make sure and lock the door unless you think you might need reading material delivered.

M, in reference to his favorite book of the week, Where the Wild Things Are: "I'm scared about it." Five minutes later, he was reciting it while we looked at the pictures, and he was cracking up.

Yogurt, Yogurt, Yogurt, Yogurt, Yogurt, Yogurt, Yogurt, Yogurt, Yogurt, Everywhere, God made some yogurt. Pasta, Pasta, Pasta, Pasta, Pasta, Pasta, Pasta, Pasta, Pasta, Everywhere, God made some pastaaaahhhhhhhh (breath) aaahhhhhhhhhh.

Snow, Snow, Snow, Snow, Snow, Snow, Snow, Snow, Snow, Snow, Snow, Snow, Everywhere, God ... made .. the ... snow. by M. (Hey, if Elton John can replace Marilyn with Diana as The Candle in the Wind and everybody pretends it's a new song, then M can certainly replace Soy with Snow. And to be clear, Soy was in 4/4 time; Snow is in 3/4. Also, it's in a different key.)

Petting the snow puppy Originally uploaded by Maynor . There was not enough snow for a man this weekend. (although stay tuned, because there is enough tonight)

M'Cathewine, Bigs, and Ooolie Originally uploaded by Maynor . That pretty much captures their personalities.

Snow angels Originally uploaded by Maynor . M & Cuz L.

Susan teaches in the afternoon,and so the boys go to Nana's or to their friends C&K's house. Tuesday is C&K day. This morning, before going over to C&K's, Susan and the boys are heading out for some errands--to the Library for books, to Sam's for bulk items, to the Bank for some jack. We talked through all of those errands with M and he couldn't wait. Later, during breakfast, I said.... Daddy: Hey, today is Tuesday! Whose house are you going to visit? M: Ummmm ... (he thought hard) ... Sam's!