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January 14, 2007 Just had to do a quick Monday morning sports update. Hospital visit is on Wednesday so I'll bring you back to the regularly scheduled program then. How about those Chargers?!! Wohoo! We watched the game at the Savocas and it was mayhem with everyone screaming at the top of their lungs for most of the second half. All three Hutchison boys were wearing their LT jerseys and were very excited about the game. Oh, All right so Charlie didn't exactly know what he was excited about in the first half and slept through the second half, but he looked the part. One of the Hutchison boys (see if you can guess who) was slightly fair-weather in that when the Colts scored the first touchdown he said, "That's it! I'm rooting for the Colts." He was firmly back in Charger camp by the end of the game though. All the experts had counted us out. Look out Patriots! Now for the second important team update. The American Lightning Bolts (our PeeWee basketball team) had their first game Friday night. There is no score kept in the PeeWee league and both teams always "win." However, if there were a score kept, it might be said that we were crushed something like twelve to one. It was at least partially coaching error because I need to mix up our subs differently. No matter though, fun was had by all and the both Sam and Andy did very well. Sammy was amazing even on bad ankles. He and Joe really moved the ball well and threw up the most shots. Once they got in the game, things were evened out quite a bit (again need to rethink my subbing). The big news though was that Andrew made our only basket. It was towards the end of the game and I was willing something to go in. Joe passed the ball to Andrew, he threw it up there and it went in. The best part was his celebration. He turned to crowd and put on quite a show, so much so that he had everyone in stiches, he was jumping around doing 360's and though I didn't see his face, Colleen said it was priceless. I wish I had it on film. Andrew will do a reinactment of the shot for you if you ask him about it. Sam was bummed he didn't score but I know he will in the next few games. He came really close. I know that I am "one of those" sports mothers. Neil actually gave me a copy of the San Diego Reader last week with the cover story "Soccer Moms Are the Worst" and said "Here, I saved this for you." I tried not to take it personally. I'll post again on Friday with some numbers and more news. Doug Sahlin, my wonderful and talented author is helping me switch the site to a blog with a white background. So those of you who have been getting eye strain by loyally reading our site should get some relief on Friday. A million thanks to Doug for the help. Margot January 10, 2008 VMA: 4.4 HVA 10.5 The VMA is down from 4.6 - I was wrong last week when I said it was 6 point something -that's what I get for doing an update without the numbers handy. The HVA up from 9.5. We are more concerned with the VMA as the HVA can be due to different things in the diet. So, would I like to see numbers like we had in the summer in the twos and fours? Yes, yes, yes but as Sam is feeling good and in good spirits, I'll take these numbers as a monitor closely sign. We don't have scans again until February. We also measured C-reactive protein which was less than .3 (good), Vitamin D=3.1, Interluken 6=3.1, IGFBP=3.7, Tumor necrosis factor= 2.6 (normal), Vitamin B25 Hydrox less than 4, D3 is 44, Total D= 44, Fibrinogen 221, D Dimer= 582 For a thorough explanation of what all of those numbers may or may not mean, please see Neil. I do know that most of them are good. Sam is in school today and I'm about to drop Andy off. Charlie is downstairs playing with Elizabeth and the vrmm, vrmms. He says "fell" when he falls down now - usually because he is running so fast he can't keep up with himself and he loves to yell out, "I'm done!" when he's done and "Mom" at the top of his lungs we he wants to show me something or wants something. We went out to our family restaurant, Soup Plantation, for dinner last night. It was packed and a woman came up to me and told me how well behaved my children are (don't laugh Colleen) and she said it was obviously because I stayed right on top of their behavior (again stop laughing) as she saw me jump up when one of them wasn't doing what I asked him. It happened to be Charlie who was standing up in his chair and I was afraid he was going to fall and bonk his head but I was right on top of it. I told Neil when he got back from the frozen yogurt and we laughed and thought we'd better mark the date on our calendars and interrupt our cancer update to report it on the website. I think it helped that we were two tables away from a bunch of screaming, banging, running around kids, but no matter, our kids were angels. Mark the date. We have basketball practice today. When I told Andy at 6:03 this morning he said, "We have practice today? What are we doing sleeping?" Neil and I are still laughing about Sam in the first scrimmage. He dribbled the ball down the court, chucked it up there from pretty far out and it went in. He had the most surprised look on his face which he covered up with a "I knew that would happen" look and put his hands up in a victory sign and turned around slowly in a 360. You might have had to have been there but it was funny. I don't want to say he's a ball hog but in our two on two drill, Sam's partner didn't actually touch the ball. He looks good on the court though. His ankles seem to do fine during practice but he walks gingerly afterwards. When I ask if he'd like to take a break, he says no. We should have the custom braces some time next week. Andy is a great dribbler but gets very frustrated because though they lowered the basket some, they didn't lower it all that much and it's a job for the littler guys to even get it up there. Our first game is tomorrow. We are counting the days until Andy's birthday. It's on January 29th. He's been telling everyone that he is now four and 11/12 . It's very funny. I was on the ball enough to get the invitations out three weeks ahead of time but apparently I sent out several blank invitations. So if any of you San Diegans with five year-olds are wondering who the Pump it Up Party invitation you got in the mail is for, it's Andy. Yesterday as I was playing charades with Sam and Andy (Deb gave us a board game version for Christmas) and Charlie was jumping on the board and trying to steal the cards, the boys and I were laughing so hard we were practically crying. I was hopping on one leg to act out "hopping on one leg" and Andy yelled out "Pig!" because he had cheated but he happened to look at the wrong card. Sam and I laughed so hard we cried. In the middle of our game the phone rang. I was waiting for the numbers from Jayne at the hospital. As soon as I saw the caller ID my heart began to pound and my throat got dry. I said "time out" to the boys and picked up the phone. Jayne is pretty good, she doesn't muck around with too much small talk for me and goes straight to the numbers. I wrote them all down, took a deep breath, relieved they hadn't really gone up and went back to charades and laughter. Such is the life of cancer parents and right now we are the very lucky cancer parents. Please think good thoughts for Austin Melgar. He is a little boy who loves soccer just like Sam and is turning seven this year. He's having major leg and eye pain and his blood and urine markers are not looking good: http://www.caringbridge.org/visit/austinmelgar His scans are in a couple of weeks. As much as I try to compartmentalize things and move forward in a fun and positive manner for the kids, it just floors me every time I read a website or hear about a child not doing well. It's very odd to feel like I know these kids from reading their websites and yet have never actually met them. I push it all to the back of my brain when I'm with my kids and it all resurfaces in the middle of the night and I am devastated by the weight of Neuroblastoma. Sorry not to end on a more positive note, just what's on my mind today. More soon. Margot January 2, 2008 Happy New Year! We are back from New Mexico and I'm back from my progress report vacation. The boys had a wonderful time in New Mexico. It was parka and snow boots kind of cold and there was snow on the ground much to the boys' delight. We went sledding up at the ski hill which was a big hit but we had to go into the lodge for a big hot chocolate break because of the cold. We decided that it might be better for them to try skiing when it's not so cold and Sam's ankles are in better shape (Spring skiing maybe) so we don't rent all the gear, get all heavy clothing on and buy the lift tickets only for the boys to take one run and head for the lodge. Wimpy wimpy California family, I know. Sam and Grandpa fed the horses together every morning while we were there and walked down the lane to get the paper and Sam, Andy and Charlie had a great time feeding apples carrots and sugar cubes to the little colt out in the field, Hale Bop. Charlie woke up every morning saying "Dog" and went to look for Coco, the old lab. He laid on her and followed her everywhere. He laughed and laughed at Molly, the puppy who is full grown and full of steam, playing with the colt. Neil took Sam and Andy bowling (yes, there is a bowling alley in Pojoaque, who would have thought) at the casino and swimming at the big municipal pool complete with water slides and whirlpools in Santa Fe. Grandpa took us all to the firehouse (he was the Pojoaque volunteer fireman of the year last year) and the boys ran from truck to truck pretending to drive and climbing all over everything. Charlie kept saying "vrmm vrmm, jump!" when he wanted to get up into the trucks. Grandpa showed the boys the "jaws of life," his breathing mask when he goes into house fires, and the air truck that carries the air for the air tanks. After a thorough tour we were talking with the paramedics on duty when a call came in, "We have 420 (or whatever the number was), blah blah blah." "A 420, that's a stabbing." Eeks. Neil and I were hoping the boys didn't catch that. No such luck. From Andrew, "A stabbing!" "Who got stabbed?" "What were they stabbed with?" From Sam "Is there going to be a lot blood? Is grandpa going to see blood?" So I danced around the whole stabbing issue and tried to explain as vaguely as possible as the guys got into the truck and the ambulence and drove away. When my Dad came back from the call he said, "I don't know why they called that a stabbing. Someone snagged their finger with a fish hook while moving some stuff." Great. My Dad and Stephanie and my mom pitched in for me to have an awesome day at the 10,000 Waves Spa. I got a facial and a massage. For those of you who don't know, 10,000 Waves is very "Santa Fe". There are a lot of slow walking, self aware, low talking people there. I got a great facial and then had some time before the massage so I went into the sauna. As Neil said after I told him about it, I was like something out of Seinfeld in the sauna. Not a lot of chit chat at 10,000 Waves. Everyone is meditating. So I'm thinking to myself. Ok. This is my relaxation time, I am a cancer mother, I have a lot of stress, I tend to be queen of denial, clear my mind.. Wow! That lady is really into it, I wonder what she is thinking about? Maybe it will help if I face my palms up towards the ceiling like she's doing. Okay... Whew it's hot in here maybe I should go out and get myself a glass of water." Needless to say, not much mind clearing was done. My massage guy was aggressive to put it nicely. As he had his elbow in my back, he asked if I would like more or less pressure. I croaked out "Less please" and he said, "Really? Because I've never seen anyone with more knots in their back and neck than you have. Let me just see if I can work some of this out. Do you get massage regularly?" I guess all that denial has got to go somewhere. It was a very relaxing day though. I think my face is still glowing from the facial. I grew up in rural New Mexico so I'm used to the generally slower pace and people tying dead chickens around dog's necks so they don't eat any more chickens. And though he relaxed some too and had a great time with the boys, Neil is very happy to be back in the land of high speed Internet connections, ESPN and seventy degree weather. We had a pretty quiet New Year's Eve since we had just gotten back. I made Hoppin John for good luck yesterday and we had the Monacos over. Okay, now that I've thoroughly frustrated all the cancer families reading this who are looking for medical information and have written this off as a worthless site, Sam went in for a blood check today and a Zometa infusion. However, we wanted to add some labs that weren't on the list so we didn't actually get the blood check or the zometa and are scheduled again for tomorrow. Sam's last LDH was 648 (normal). His HVA and VMA have been ticking up a bit -went from 4. something to 6. something - still normal but not what we like to see - keep in mind that we freak out over every small change, so stay tuned for tomorrow's results. We'd made a few pill changes and are going back to what we were on before things started ticking up. We're thinking that artemisinan may be the key as we'd taken a break from it. Sam's ankles are still completely screwed and I am going to get the prescription braces recommended by the ortho at Children's if only to give something else a try. He is stoic as usual, I'll see him limping after he's been running and I say, "How are your ankles?" "Good." is what I get back but I can see that he's hurting. We have basketball practice on Thursday and Friday this week and I don't see how he's going to run up and down the court. I'm hoping the new braces will help. - Our first practice was sort of funny. We are a very beginning team. It's going to be a challenging season and I think I'm going to have to assert more control over the whole gang as the listening skill is going to be as tough to teach as the concept of the pivot foot. My brother instructed me make sure to practice and practice the lay up as it's the most basic shot in basketball. Problem is, our gang is not ready for the lay up yet. - So, on the medical front, we are working on Sam's ankles and going to be anxiously awaiting tomorrow's VMA/HVA results. More Soon. Happy 2008. Margot December 20, 2007 Only five more days until Christmas as Sammy so joyfully told me last night. The boys are doing well we are running around in a pre-Christmas rush. Sam had his Christmas music program this morning and was so cute dancing to all the songs. He had labs yesterday, I know it's been a while since I've posted numbers. I don't even have them back yet if you can believe it but I'll post as soon as I get them. They've been pretty steady, the last few times. We brought chocolates in to all of the nurses and Sam wanted to hand them out but then he got a little shy. Since we gave them to all of the nurses, Sam was really concerned that the nurses who help him out all the time get their fair share and that we were giving a big enough box to Dr. Willert. The boys are all signed up for basketball and I'm the coach. Tomorrow night is our first meeting and Sam and Andy are on the same team with Joe, Jake and Luke Brunette. Sam and Andy are so excited they can't stand it, they keep asking me when the first practice is. Practices are going to be interesting with Charlie but he's a ball lover, so hopefully they'll go well. I'll have to call up my brother for some pointers. Andy's preschool party is today as well. It's his first day back to school after a couple of days out - he had a 24 hour throwing up bug a couple of days ago. It was lovely. We've gotten a very nice response to the article in the Wall Street Journal with many emails from people who want to help out. We are so very grateful to Geeta Anand, the reporter for bringing some visibility to the cause. She was wonderful to get to know and has been really nice to work with. She is a gifted writer and we are very lucky she wanted to feature us. To be honest, I wasn't thrilled with the title of the article - I'm not sure any mother would be - but that aside, we've been overwhelmed by the kind and positive responses. We've been contacted by other media outlets and I'll keep you posted on that front. If we do anything, we would like to make a bigger story to inlcude all of the parents who are fighting this fight because we are not in this alone. There are so many parents doing amazing, heroic things- the Londons (who we owe everything to), the Mikulaks, the Laceys, the Whitmers, Pat Tallungan, the Scotts, the Thomases, The Beungers.... I'm sorry I couln't get the link to the article to work, I think the article isn't up anymore but Geeta got us permission to put the whole thing up on the website so I'll get that done shortly. In the meantime, I hope everyone is having a wonderful holiday. We are off to New Mexico on Monday. It is a chilly 14 degrees there and I'm packing all of our snow gear. It would great if we can get the boys up on skis this time around. I know Taos is open, not sure about Los Alamos or Santa Fe ski hills, there might not be enough snow yet. In any case, they can sled at least. We'll do a pre-Christmas Christmas here this weekend with Cathy's kids, Maureen and Joe, Jakey and Arielle. Happy Holidays and More soon. Margot
December 15, 2007 Our 15 minutes of fame. Sam and Neil are featured in the Wall Street Journal today: I'll update more soon. The boys and I are off to the park. Margot December 7, 2007
Our Christmas Pics. These were taken by the amazing Deb and she so kindly said I can put them up on the website. I have not been practising what I preach much lately. I have been complainy and skreetchy mother. I have been focusing on all of the wrong things so far this holiday season. I usually love Christmas but somehow I started off this season on the wrong foot. It took reading Patrick Lacey's blog from December 3: http://www.willlacey.com/2007/12/vmahva-lowest-ever.html and then to the the Mikulak's site which pointed me to Lucas Tran's website and Lucas's mother's post of Tuesday, December 4th. 2007: http://www.caringbridge.org/view/Journal.do?method=executeInit for me to snap out of my ridiculousness and stop focussing on all the wrong things - A side note about Lucas- I did not know him or his family personally, but I came to love them from reading their Journal and it broke my heart when Lucas died this fall. His story is one that everyone should know. His family is extraordinary. Sammy is doing fine on chemo this week. He's had no nausea and has been in a great mood so my complainy song last week was totally unwarranted. He's been eating very well too. He made my day yesterday when I went in to volunteer in his classroom and he almost tackled me out of my volunteer chair giving me a hug. We picked Andrew up early from school yesterday and went to buy our Christmas tree. I think it's the prettiest one we've ever had. We decorated it last night, put on our Santa hats and the Christmas music and had a wonderful family night. The boys had such fun picking out all of their favorite ornaments and remembering when we got them. We had to put all the breakables up top due to the Charlie factor. He had fun too though climbing into all the boxes as we took the decorations out. So, I'm vowing to slow down a bit this Christmas season, remember what's important, and give the gift of my time as much as possible. My personal step by step guide to stop the slide back into skreetchy complaining person and to cherish my family is below: 1. Ponder pictures above 2. Slap self upside the head 3. Repeat process Hope everyone is enjoying the season. More soon. Margot December 4, 2007 To Be Sung to the Tune of Jingle Bells: I hate chemo, I hate chemo, I hate chemo all the way, It's no fun to give the pill, that causes nausea every day! I hate chemo, I hate chemo, I hate chemo all the way, Sam's tired and cranky, he feels like crap, and his appetite's gone away! Dashing through the day, in a silver mini-van, it's no fun to ride around, when your stomach hurts, man oh man! Repeat refrain Sorry about that. It's the best I could do at 2:01 am. We are back on chemo this week and right after I read the boys to sleep, Sam said "Mom," and put his hand over his mouth like he was going to throw up. I didn't get what he was doing and asked if he wanted some water. He laughed and said "No" and did it again and then I said, "Are you going to throw up?" "Nah," he says smiling, "but my stomach hurts." This wasn't long after he had taken his chemo pill. The dose that Sam is on is a low dose and a lot of kids can take it every day without much side effect. It screws with Sam's stomach something awful. With as many pills as we give him, none of the others have any side effects to speak of but I hate giving him that chemo pill. We give him a week off after two weeks to give his stomach a rest. Anyway, I can't sleep because I started worrying about whether or not he would eat breakfast tomorrow. Mostly small in the world of cancer worries but big enough to keep me awake. We had a nice rainy weekend. It was the first weekend we didn't have soccer so it was very relaxing. So much so, that today, Monday, I was dreaming that it was still Sunday and I was going to get up and read the paper and make coffee. I woke up at 7:40. School starts at 7:45. Oops. I had a work meeting up in Temecula so Andrew went to school with Matthew Dykstra and Colleen picked Sam up from school. Tonight was parents night at Andrew's school so Neil and I had a date with Andrew and Maureen came to stay with Sam and Charlie and watch the Patriots almost lose -they are weakening, Brunettes and Laceys ;-) - and make cookies. Parents night was fun. We got to make a clay crab with Andrew and build blocks and play with the toy animals. He did a self portrait of himself and below it had all of his favorite things. His friends he likes to play with: Beau, Grant, Matthew and Max,his favorite food: noodles, his favorite games, Ben 10 and Power Rangers and what he wants to be when he grows up: a basketball player. He loves his school and was very excited to take us tonight. Sam had a good day at school and was very excited to have Maureen over tonight as was Charlie.The boys love to get Charlie to say their names. He says "Shome and Arrow." Sometimes they'll ask him to say it and he shakes his little head no. That just cracks Sam up. He loves it when Charlie shake his head at people. He hasn't learned no yet but he sure uses the head shake a lot. I've signed the boys up for basketball in January. They both said they wanted to play in the Pee Wee league and "the draft" is this Friday. The games are on Friday nights. I'm hoping we can get Sam's ankles in shape before then. Neil has been doing exercises with him every day and he goes back to Dr. Egoscue tomorrow. He still seems to be limping after he runs a lot but it might be getting incrementally better. I'd actually like to give him a season off but they both really want to play. We'll see how it goes. We're off to New Mexico for Christmas. We're leaving on Christmas Eve morning and should be in Pojoaque by noon if all goes well with the flights, etc. The boys are very excited about going and Christmas in general. They do their advent calendar every day. I haven't gotten out the Christmas decorations yet but it's on my "to do" list along with all else Christmas. I'm trying not to weild "the Santa threat" too often. They take it very seriously and then I feel kind of guilty. I think it's only popped out once this season. Nothing to make two boys stop dead in their tracks while fighting over who gets the biggest piece of raisin toast as saying, "Santa is watching you." Andrew actually looks around for Santa. Hope everyone is having a Merry Holiday Season. Margot November 28, 2007 Ack! I'm a whole holiday behind. How did that happen? We had a wonderful Thanksgiving. Grandma Joan and Uncle Tommy and Cousin Abby and Uncle Matt were out and the boys got to go to SeaWorld, the Zoo and Legoland all in one week. We did the same kickball game on Thanksgiving morning with the Bonebrakes and the Garveys and all the other families that came last year. It really brought home to me how lucky we are. The difference in watching Sam play this year versus last year was enormous. Last year he was so thin, bald and tired looking - he bounced back into the hospital Thanksgiving night and that morning he looked lackluster. He played, because that's what he does but we could all tell he was struggling. This year, in contrast, he had it going on. He played kickball two hours running the bases and kicking the ball. Then he came home and all of the kids played with the Monaco boys and cousin Abby nonstop all day. It's a good thing we don't have a girl in this family because the boys loved to torment cousin Abby. She's Andrew's age and she and Andrew had some differences of opinion. A good example would be Andrew's opinion of the late birthday present we got her, Island Princess Barbie, "Gross! That is a girl toy and I am not touching it." Charlie is so adorable these days. He turning into quite a ham and loves to make people laugh. He walks around with a blanket over his head until someone says "Where's Charlie?" and then he whips it off and laughs. He continually runs around with some bruise or another on his forehead. I was such the hover mother with Sam, and poor third child Charlie ends up doing things well beyond his years. Andrew pushed him in his little red car this morning around the block and ran at top speed -Charlie held on with both hands with a huge grin on his face. He gets so excited when he sees a garbage truck or construction truck when we are driving in the car. He gets all his limbs going to point at it and makes a loud Vrmm vrmm noise. We had Andrew's parent teacher conference last night and his teacher said he's doing very well. They are working on volume control in the classroom - a side effect of having a brother who is hard of hearing and trying to talk over a family of five- and his propensity to be the class clown. We have had two weeks off from the hospital but have a blood check today. Sam has been feeling fine. His ankles are still bothering him but much less so than before. We got a great doctor's check from Meredith's dad who gave us some exercises to do and Neil took Sam in to see Pete Egoscue, a physical therapist guy who has written a couple of books. It all seems to be helping -unlike the ortho visit we had at Children's hospital. We waited for three hours to see the guy who barely looked at Sam's feet and gave me a perscription for ankle braces that were $1800 and helped prevent ankle turns. Sam's pain is in the front and back of his ankles and has nothing to do with ankle turns. Needless to say, we did not order the braces. Thank goodness for Mr. Pace who actually addressed the actual problem. It's Sam's week off of oral chemo and I can see the difference in his demeanor. He's been very silly and funny lately and laughs all time at his little brothers. The other day in the kitchen all three boys and I were laughing so hard we couldn't stop, even Charlie was laughing. It's moments like those when I just want to freeze time. There are other moments when I want to fast forward to five years from now so that I know Sam is well and is five years out from relapse. Really though, I don't know if we'll ever stop worrying so I take back the fast forward part. I really wouldn't want to miss a minute of these boys growing up (all right all right, maybe the minutes when they are beating on each other and I am screaming like a lunatic). Sam is doing a timeline in school for homework and he has to put down a major even for every year of his life born, walked, brother was born etc. I struggled with helping with 2005 because it was the year he was diagnosed that is what dominates my thinking of that year. I didn't want Sam to know that though. I didn't want him to have to put something like "six hour surgery to remove tumor' as his major event. We ended up putting that he started kindergarten - though he didn't actually start until 2006, he doesn't know which year he started. His major event for last year was Charlie and his major event for 2007 was catching his first fish with Grandpa. More soon. I'll put the Christmas card pics up soon too. Though I might actually get some out this year, I figure if I put the pics up early, I can trump our highly organized friends who get cards out the week after Thanksgiving and never have to send Christmas cards that end up being Valentine's Day cards ;-) Margot
November 3, 2007 We are back in The Show! Apparently, we were never actually out, just mistakenly hopped on the wrong bus. We met with the head of San Diego radiology yesterday, Dr. Harvey, very nice smart guy. He went over the MIBG and MRI scans with Neil (I was on my way - had to pick up Sam from school so missed the analysis), the scans from April, August and October. He said Sam's October scan is clean and that the MRI and MIBG don't have anything that look like disease. Thank goodness. We are so happy, we're back up to cloud six. Now, if we can get Sam's ankles taken care of -Ortho appointment Monday morning, we'll be in good shape. I was talking to people about he MIBG results and several people said, "You sound so calm about it." I think because we saw the scan from so many different views and the static scan looked so perfectly clean to me, I wasn't sure I actually believed the "increased uptake" in the report. According to Dr. Harvey, there are legal reasons why the radiologists have to err on the side of caution. Good thing we didn't totally freak out and start Sam back on IV chemo. I'm very thankful that Dr. Willert got us in to see Dr. Harvey to go over the scans with us. Anyway, we are lucky and have even more to be thankful for this Thanksgiving. Neil in his unstoppable fashion said to me this morning, "Honey, we've been given a gift and this means I'm going to rededicate myself (not that he's ever undedicated himself) to stopping this disease and I'm not going to rest." He doesn't rest much anyway. Please visit Give Thanks for A Cure this holiday season. I'm trying to get a link on our home page but it seems to be beyond my limited technical abilities to add a link to the banner. That should happen soon though. Margot November 1, 2007 What are you thankful for this year?
Before I had kids, a friend and I volunteered in Father Joe’s Village in San Diego to feed the homeless on Thanksgiving Day. As we chopped the rather dicey looking vegetables that had been donated and I served dinner to poor (mostly men) with long dirty fingernails and no family to eat Thanksgiving dinner with, I was thankful I was not them. I was thankful that I was going to go back to have dinner with family and friends who I loved and who loved me. I was thankful that I didn’t have to worry about where my next meal was coming from. Two years ago as I was driving Sam back from The City of Hope Hospital to San Diego I was listening to the radio as he watched a movie. The host of the radio show was telling her co-hosts about the previous day and how everything had gone wrong with the house that they were trying to buy (or something like that) and her kids were driving her crazy and she said she called up her best girlfriend to lament and her girlfriend said what they always said to each other to help gain perspective, “Laura, our kids don’t have cancer.” There it was, two people who were thankful on regular basis that they weren’t me and that their kids didn’t have to go through what Sam has gone through. They were thankful that their kid’s bad days would be healthy kid bad days and not the exponentially worse, cancer kid’s bad days; and that they could be relatively sure that their kids would be with them for many Thanksgivings to come.
At that time, Sam had just finished his stem cell transplant which was brutal to him from our perspective but the doctors said he had breezed through it compared to what other kids had endured from it (death being the worst side effect they'd seen). It left him with great hearing loss and most likely sterile. The stem cell transplant is the last part of the COG 3973 protocol. The 97 in that number is because the protocol was developed in 1997 (almost ten years before Sam was diagnosed). Neuroblastoma is a very nasty disease and up to this point, there haven’t been any options for doctors aside from the very toxic treatments aimed at killing the disease. The pace for change in pediatric cancer treatment is excruciatingly slow, too slow, unfortunately, for many many kids.
Magic Water is a group of parents who have decided that kids deserve better than ten year-old, ultra toxic therapies. We are partnering with doctors to fund research for cutting-edge, low toxicity drugs that can give all neuroblastoma kids a chance without punishing their bodies sometimes to the point of no return. We are launching Give Thanks for a Cure this month to help fund the Phase II Nifurtimox trial in Vermont. The Phase I trial for this drug has had very promising results. The three children featured on the Magic Water web page, Max, Sam and Will, will not benefit from the Phase II trial as Max and Sam are already on Nifurtimox and Will is not a candidate for it, but it has the potential to help countless other kids with Neuroblastoma with minimal side effects. Please help spread the word about Give Thanks for A Cure and stop by the website and let us know what you are thankful for this year, and, if you find you just have too much money (ha ha) as the year is nearing its end, please consider donating to this worthy cause.
This year I am even more thankful for my wonderful friends and family than I was that day ten years ago. I am thankful for my three amazing children who are the lights of my life. I am thankful that Sam will not be spending the night in the hospital this year for Thanksgiving and that he is here to grace our table with his smile and his laugh. I’m thankful for my husband who never quits and I am thankful that I am me (Sam, Andy and Charlie’s mom).
Margot http://www.givethanksforacure.org October 31, 2007 HAPPY HALLOWEEN! And a Happy one it will be in the Hutchison household. We got a great MRI report! The spots that were there in April are still there but they are ALL significantly smaller! Yahoo! Healing bone! Nothing is progressing and since almost nothing is lighting up on MIBG the MRI spots are probably still from radiation and when we progressed last year but they are getting much better. Thank God! Neil called me in between a conference call and my driving to Sam's Halloween Carnival dressed as female Dracula so I didn't get many details but I'll post more tomorrow. I was so excited that I slammed my cape in the car door and almost choked myself walking away. Just call me grace. I have to go help The Increddible Hulk, whose hair is black and face is green get some food into him before Trick or Treating. Andy's parade yesterday was great. He makes a very funny dracula but you can't tell him that because he is scary. I can't wait to post the pictuers of him and Sam - they both look fantastic! Sam has fake blood running down his cheeck that looks very real. We haven't dressed up Charlie yet as he stayed with Elizabeth during Sam's carnival so I could work the tatoo booth but we'll post pics of him soon. Yahoo! Thank you for all your support and prayers. Margot October 30, 2007 Alert: long post today Yesterday was the MRI and it was the day from hell. Poor Sam. We got up early and he had to be NPO because he was being put to sleep for the scan. The first thing he said was "I'm hungry." Usually, music to my ears but of course not yesterday. He didn't want any jello, which he could have had until 7:30 am. Then just as we were about to leave at 8:30am, he wanted the jello which of course he couldn't have (or so I thought) by then. Ugh. We got to the hospital at 9 for a special TGF beta blood draw that we drew from Sam and Max Mikulak and fed-exed both samples to Dr. Belanger's lab. Then we went to check in for the scan. It took a long time for them to call us (we got through almost five chapters of the new Magic Treehouse book) and I was wondering why they were so lax about the timing w(hen the scan was at 11:00. They checked us in at about 10:45, weighed Sam, did blood pressure and I filled out all the paperwork and then the nurse said, Ok. Come back in about an hour and 15 minutes. What!? "Oh yes, says the nurse, the scan is at 12:30, check in time was at 11:00. I still don't how who screwed that one up -me or the nurse that called me about it but I could swear we had the scan down for 11. Ugh another hour of no eating. So Sam and I decided we'd better make a plan of exactly what he was going to have when he woke up and he said he wanted to go with me to Soup Plantation. It was a date. In the meantime, we zipped over to Toys R Us to kill some time and picked up a few new small transformers for the boys. They were all out of the medium sized Bumblebee (Sam's favorite guy) but we found a little guy. Tangent - A quick Sam story about the Transformer movie: Neil rented it for the boys who absolutely loved it - Funny that a literary agent who is currently trying to sell a book called The Sex Violence and Junk Food Diet: What the Media is Feeding Your Kids and What you Can Do About It is actually feeding the diet to her own children. Anyway, age appropirateness aside, I put Charlie to bed before the movie was over and then when Sam came upstairs I asked him what happened in the end to Sam, the main guy in the movie. Sam said, "Uh, (sigh) he kissed." as if that ruined the whole movie. It cracked me up. Sam and Joe were watching the movie together a week later (Colleen's feeding her kids the same diet ;-)) and they said "I like this movie but not the end." "Yeah, the end is the scary part." "Yeah, the scary part is the kissing." and then they cracked up. Ok. Back to our day from hell story. So, we got back to the hospital in good timing, the guy came to pick us up for the scan about one chapter after we got there. The MRI spot is all the way across the hospital from the waiting room. We then sat down to wait in the MRI waiting room. Two more chapters -we are close to finishing the book at this point and Sam says, "Boy we've sure been waiting a lot today in a lot of different places." Yes, yes we have, buddy. They finally called Sam for the scan and I held his hand as they put the propofol (sp?) in his line. Just as Sam was closing his eyes the MRI tech said, "Is there any particular spot we are looking at in the leg Mrs. Hutchison?" "The left distal femur." I answered, "And his ankles." Then I gave sleeping Sam a kiss and went back out to the waiting room. I picked up the coffee pot in the waiting room and drained the last of the coffee that had probably been sitting there for many many hours into a cup and then into my body. When Sam is NPO Neil and I are NPO and a certain one year old had woken me up at 12am, 2am, 3am, watched two Baby Einstiens at 3am and then walked outside to try and get back to sleep until 5am. I tried to read some proposals I had brought and ditched those because I couldn't concentrate. I tried to read some of the Oprah Magazine that I had thinking there would be some uplifting stories in there and then gave up and sat and obsessed about why I told the guy to look at the left distal femur. "Now, would they look particularly closely at that spot and write up some tiny teeny thing that they would have casually glanced at and thought fine had I not alerted them?" Were we going to be given heart failure because they were paying particularly close attention to that spot? Had I jinxed it by saying we had something to look at there?" Of course these are all totally irrational thoughts. You don't need to tell me that. A woman came out after about 15 minutes and asked how much Sam weighed. "About 47 to 48 lbs" I answered. "Huh," she said, "We were right." Then she walked back into the scan room. So then I sat and obsessed about what was going on back there. When Sam came out after about an hour and twenty minutes he was still sleeping and Dr. Flynn, the awesome anesthesiologist, told me that they had to put in a lot of propofol (sp?) in him. So much so that Dr. Flynn thought his port wasn't working. He explained to me that when kids have had a lot of chemo, they tend to metabolize the meds much faster and it takes a lot more to put and/or keep them asleep. So then we went back to the recovery waiting room where I sat outside and Sam was inside and they said they'd call me when he woke up. So, I sat and obsessed until they called me in. Sam was very very woozy but, as he usually does, he kept trying to get up. And, he kept saying that his eye hurt. They'd taped his eyes closed for the scan. So the nurse and I put some saline in his eye and kept trying to get him to lay back down. "I'm hungry" he kept saying "Let's go to Soup Plantation." After he'd had some gatorade and had lay there for about twenty minutes trying to get up, the nurse said we could go. I put our books and papers in a "belongings bag," picked woozy Sam up and started the long trek accross the hospital back to our car. I finally got to our car, put the books in, settled Sam in, who was still saying that his eye was really hurting, and put some more drops in his eye. As I was about to start the car my cell phone rang. It was the nurse, who was very upset and said that there was a miscommunication between her and Dr. Flynn and that no one had put heparin in Sam's line. He was de-accessed by now and the nurse said I was going to have to bring him back, put another needle in and put some heparin in his line. "He doesn't even have any cream on," I said. "I can get some cream for him, she said." "I have LMX in my glove compartment and Press and Seal on my front seat." I said. I looked at Sam still trying to shake himself awake after having been given enough propofol to put a horse to sleep and he was crankily saying, "Why did you put me to sleep and why does my eye hurt so much?" I wasn't sure how to break it to him that we had to go back and get another pokey. He was so done. I got out the LMX and opened the back door and Sam looked at it and said, "What?" What are you doing?" "Well, buddy, we have to go back in because the nurse forgot to put heparin in your line." Sam said no way. He wasn't going to do it. He wasn't going back in. He was not going to get another pokey. He was starving and he wanted to go the The Soup Plantation. He started to cry, took the LMX out of my hand and threw it in my face. Frankly, I'd have thrown it in my face too. So, while it's perfectly acceptable for a seven-year old whose eye hurts a lot, feels like he's spinning and is facing a second needle in his port to hysterically cry, it's not really acceptable for his 37 year-old mother to do the same. I was so frustrated. I tearily took some deep breaths told myself to pull it together and find a solution. I called Neil, who didn't really have a solution and then I called the Hem-onc. clinic which I was actually much closer to than the recovery room and asked if I could take Sam to The Soup Plantation and then come back and have someone at the clinic put heparin in his line. They said as long as we weren't gone for too long it should be fine. I called back the nurse in the recovery room who was in tears herself by this time, jumped in the car, zoomed down the 163 Freeway, got on the 8 Freeway and got to the restaurant in record time. Sam said he was ok with the solution but his eye was still killing him. I carried Sam to a booth and went through the line to get all the things he liked. Half way down the line I turn to see Sam with one eye closed weaving through the restaurant. I drop the salad tongs and race over to him. "Buddy, what are you doing?" "You're still woozy." "I have to go to the bathroom," he said. We made it through what was breakfast and lunch at 4pm -Sam ate a ton which was great. I don't know what the people in Soup Plantation thought of us. We got back to the clinic at about 5pm and our nurses who we love took care of us. Sam had put the LMX on in the car and we had the freezy spray ready. Cat was waiting for us with all the stuff and I breathed a sigh of relief. Chris took one look at his eye and turned off the lights and said he has a cornial abrasion which she gets all the time and that they are extrememly painful. She called the doctor on call who said she couldn't call anything in without looking at him but that we should go to the emergency room. I thought I might have a heart attack. Chris said that I could get some over-the-counter oinment for it and that the cells in the eye regenerate very quickly and that he sould be better in a couple of hours if he could keep his eye closed. Have I said enough how much I love our nurses? I think hem/onc. nurses are about the best there are. We went home and saw Charlie and Andy. I ran and got the ointment, Sam had eye pain for about three hours and then it was much better. This morning was the first day back to school for San Diego. I was a bit worried but Sam popped right up. He asked me if tomorrow is Halloween. When I said yes, he pumped is fist and said, "Oh Yeah!" He is at school today. His ankles are much worse and I can see that it hurts to walk. They were getting better and then he went ice-skating and they back-slid. I think from all my google searches and Sam's description of where the pain is, and when it happens that he has achilles tendonitis. It says on the Internet that it causes extreme pain when walking is brought about from activity and gets worse after activity -exactly what Sam says. I've gone an bought more in-soles this morning and Kelly, our resident physcial therapist, is going to take a look at him this afternoon. Ortho appt. is next week. Andy has his Halloween parade today. We just painted his nails black and I'm about to go downstairs and get him ready. He's so excited. I'll be sure to put some pics up of all the kids. Sam's carnival is tomorrow. We carved our pumpkins and Charlie likes to pull the tops off. Sorry for the long post. I'll try to edit later. I had to get all this off my chest. Sammy is amazing. I'm not ever going to put him to sleep for another scan again. In tyring to save him some discomfort, I caused much much more. Argh. The nurse called this morning to apologize again. She felt really awful about it and had left a teddy-bear for Sam at the clinic last night. She said she couldn't believe I have LMX in my glove-compartment. Of course we do. One more Sam story. We were watching a football movie three weeks ago and they guy in the movie had practially broken his shoulder and wanted to keep playing. The coach made him sit out and said he'd done enough for his team. Sam was outraged. He said. "Why doesn't the coach let him play? If your body hurts, but you can still play, you play." I can't stop thinking about that. Cancer sucks. I'll post the MRI report as soon as we get it. Margot October 25, 2007 The boys are home all week from school because of the fires. We are fine, far enough out of the range of the fire that we didn't have to evacuate. Neil's office is right in Rancho Bernardo, the spot most affected by the fires and today is the first day he's been back to work. He said the air quality is very bad and he's only going to work until noon. Several of the people he works with have lost their houses and Sam's elementary principal lost her house as well. Our thoughts are with them. The air around our house has been smokey and the kids have been inside all week. Good Times.Today and yesterday with the winds blowing in from the ocean, the air has cleared quite a bit. We went to MyGym on Tuesday afternoon as it was open and free and the boys got to run around. Yesterday Andy had a play date with Luke and I took Sam and Charlie to the hospital. It was actually great because it's totally sealed and Charlie was able to run/trot up and down the halls and get some energy out. We did several blood tests. They took about 50mls of blood (a lot) from Sam for tests for Dr. Belanger in addition to his normal CBC and chemistry. His LDH is down about 100 points from the last measure -618 which is great news. We haven't received the VMA/HVA yet but are optimistic. He's feeling fine, a little tired at night from the cytoxan (and running around all day) but otherwise in good spirits and by all outward appearances, good physical shape. The Prevacid has really been helping with his eating and he was 48lbs yesterday. Wohoo! We have an MRI scheduled for this coming Monday. Ick. We are still working on an appointment with the radioligist who read the MIBG scan and Dr. Willert. I'll refrain from further comment on that topic. Andy is at playdate with Beau today and Sam is currently playing his latest video game obsession -All Madden Football- though I have to put a curb on that and practice spelling later. He plays as the Chargers and usually against the Patriots (sorry Laceys). Unlike in real-life Sam's Chargers crush the Patriots. He's off to go ice-skating with Mimi at the mall in a few minutes. We'll have dinner with the Monacos tonight and last night went to the school fundraiser at Rubios so Sam's getting in his friend time too. Distraction distraction. As long as we can keep busy I can "la la la everything is fine" through the days. Middle of the night is different but I'm getting in lots of reading. We are of course very excited for Halloween around here and have decorated the house. Sam is going to be the Incredible Hulk, Andy will be Dracula (you have to ask him to say "Guuud Eveening. I vant to bite your neck." It's a crack up. Charlie is either going to be a little devil or Frankenstein. The Frankenstein costume is a little tight in the shoulders for our little linebacker but so cute. That's all for now from Smokey San Diego. Margot Ocotber 18, 2007 We met with Dr. Roberts this morning and we are going to do an MRI so that we can compare it to April's MRI and see where we are. We are back on oral Cytoxan, we are going to add Celebrex and then add oral Etoposide and see how he tolerates the combination. Dr. Roberts thinks it's "worrisome" that there is increased uptake. We didn't acutally get to see the scans but we asked to talk to the radioligist about them and Dr. Roberts said he would set that up. He thinks we had it "beaten into submission" enough that it didn't show in August and now I guess it's not being so submissive. We'll see what the MRI shows. Argh. Of course we are now kicking ourselves for fixing what wasn't broke and doing the Texas trial but there is no rewind so on we go. Dr. Roberts thinks it's a good plan to give some sort of low dose anti-cancer drug every day in lieu of the hitting it hard and then having a break for four weeks. I'm game for that plan because it gives Sam a much better quality of life. We are still looking at one small spot, the same small spot we've been looking at since relapse so things could be worse. We've scheduled another MIBG for one month from now so that we can keep on top it. And of course we'll check blood counts frequently. Thanks everyone for thoughts and prayers. The boys are their rambunctious selves today. Sam has soccer practice tonight. Margot October 17, 2007 "Yeah, I was in the show. I was in the show for 21 days once - the 21 greatest days of my life. You know, you never handle your luggage in the show, somebody else carries your bags. It was great. You hit white balls for batting practice, the ballparks are like cathedrals, the hotels all have room service, and the women all have long legs and brains." -Crash Davis in Bull Durham We were NED for exactly one month and nine days. I drove to the hospital to physically pick up the scan this morning as neither Neil nor I had received a phone call. Neil drove to the hospital to meet me when I read him the results "Increased uptake in the left distal femur." Neil has the actual report now but it says that the spot looks the exact same as it did in the April scan (it was vague then). So, it was there, then gone and now it's there again. The radioligist recommends that we do an MRI. Neil and I have an appointment with Dr. Roberts to tomorrow morning to talk about a plan. We'd like to review the scans, compare, April/August/ September scans and ask about the fact that the static scan looked clean to us which seems counter-intuitive. We are trying not panic but of course we are panicking some. We've been off chemo for the Texas trial so we'll add that back in -whether it's IV or oral we'll decide with Dr. Roberts. Dr. Willert is at COG -part of the delay in getting our results. Our HVA was 7.5 (down) and VMA was 3.2 up by .4 (not much). I should have more information tomorrow after we meet with Dr. Roberts. Quick Update on the kids: Sam had a great day at school. When we got in the car after I picked him up the Smash Mouth song "All Star" from Shrek was playing on the radio. It's Sam's favorite song and I always think of it as his song. We danced all the way home to it. Sam is football obsessed these days and brings a football when we go places. Sometimes I'll be standing in the kitchen or upstairs and Sam will say, "Hey Mom!" and then a football will come whizzing at me which I have to either catch if I'm fast enough or duck or bat away. He scored a goal in soccer last Saturday and though I was watching Andy's game which was at the same time, everyone said it was an awesome goal. They lost 3-2 but they did manage to win their first game the Saturday before. Andy and Charlie are doing fine. Charlie says "Uh Oh" all the time now and is working on his animal sounds. He is in to trucks, balls, trains, and motorcycles - he's quite the renaissance man. Andy is very popular with the preschool crowd. He's having lots of play dates and my friend Kelly called him the mayor of the rec center. He scored a goal on Saturday too and had an awesome dribbling move that left the other team in the dust. We are back to carrying our own bags. I'll let you know what that entails tomorrow. Margot
October 16, 2007 Oh that I were a hacker. I would hack into the Children's San Diego computer and find our own scan and VMA/HVA results. Still no phone call. As of yesterday when Neil called, they were still pending. I called and left another message this morning. Argh. Picture Day It is picture day at school today. Mrs Gage moved Sam's class picture to 11:10 so he could come back from the scan in time to take it. Thanks Mrs. Gage. Should be much easier than the picture he just took. We're not sure of MIBG results and are going to have to wait for the read on Monday. Makes for a long weekend. Neil and I saw the same spot on his left femur in the full body scan but when we looked at the static scan (which has better resolution and is what the radioligists put more importance on) it looked clear. Loreen, our wonderful tech said she coudln't see anything which will provide some comfort over the weekend. His ankles were definitely clear so the ankle pain, as we thought, is due to activity. I spoke with the doctor yesterday about it and if it's not better in a couple of weeks, she's going to refer us to an ortho. Sam said it's getting better though. After trying several different kinds of shoes I put him in some that are a size too big and that seems to be helping. It may be less pressure on the achilles tendon.
His LDH yesterday was 714 so it's been bouncing around quite a bit. We would have liked to see it lower before the scan - that way we could have told ourselves how great the LDH looked over the weekend. It's still normal but lower would be better. We won't get yesterday's VMA/HVA until Monday so that's no help either. Yesterday a very nice black cat not only crossed my path but entwined itself through my legs as I put Charlie and Andrew into the car after dropping off Sam at school. I bent down and let Charlie pet it but my instinct was to kick it as far away from me as possible and scream "Get Away From Me It's Scan Week!" Ha Ha, Can you imagine the gossip at pick up time? I could have been the talk of the town. I'm a woman on the edge, I tell you. Scan week is not good for mental stability.
Sam was a champ as ususal. He watched Surf's Up during the scan and didn't move a muscle. He hasn't wanted much breakfast lately so we tried switching the Nifurtimox to the morning since night is when the stomach repairs itself, we had to pull over three times on the way from the hosptial because he thought he was going to throw up. We've got a prescription for Prevacid now so hopefully that will help. We've got a busy weekend so will hopefully be distracted. My wonderful awesome author, Doug Sahlin, is going to help with the website this weekend so by Monday the font will
In any case, if the spot is there, which it may not be, it is the same spot and we may be able to dissapear it again with two day IV topo. I'll post more on Monday. If you own a black cat, sorry about my mean thoughts. Margot October 1, 2007
Tony dropping Sam down the ramp so he could slide down
As you can see from the photos, Sam had a pretty awesome Friday. The Mikulaks invited us to a skate demo and lunch with Tony Hawk, Shawn White, Bucky Lasek, Jean Postec and a few up and coming young skaters whose names I didn't get down. The day was auctioned off for The Tony Hawk Foundation which helps to build skate parks around the country. One of the teachers at Max Mikulak's is married to Sean Mortimer, editor of Skateboarder Magazine and who made possible the invitation for Sam and Max to attend with the family who won the auction. As Melissa Mikulak put it, the boys crashed the party. Thank you Mikulaks and thank you Mr. Mortimer - you sure made two little boys days.
Everyone from the foundation, Tony Hawk, Shaun White and all of the skateboarders couldn't have been more gracious and kind to the kids. We got to see an hour skate demo on this enormous ramp in Tony Hawk's warehouse. As you can see from the picture of Sam dropping in,it's completely vertical at the top. The tricks these guys pull off on it are mind-blowing. Then we had lunch with everyone afterwards and the kids got to skate around on the bottom of the ramp and a few of them slid down it on their behinds as Sammy is doing. Then we got everyone to sign skateboards and took pictures. Sam was in heaven. I don't think he got the smile off his face from the moment I told him where we were going when I picked him up early from school. He usually has to go to the hospital when I pick him up early so it took a few "We really don't have to go to the hospitals?" for him to get it. When he was four and a half and our awesome wish granters from Make-a-Wish came to find out his wish. They played a little board game with him during the course of which he had to answer where he would like to go, who he would like to meet and what he would like to be. He picked Australia to see his cousins, Tony Hawk and race car driver. He ultimately picked Australia for his Make-a-Wish but it's so cool that he got to meet Tony Hawk last week. What a nice guy Tony is. Shaun White is very nice too. Because we were crashing the party I could not bring Andrew. It was one adult and Sam. Since Neil was working I went. I have to say that I didn't sleep much Tuesday and Wednesday night knowing that Andrew, who wore his Tony Hawk shirt every day this summer would not be able to come. I was very afraid it would break his little heart - part of the reason we left it as a surprise to Sam so there wasn't too much build up. I called Melissa and she nicely called back and said she had an extra Tony Hawk skateboard that we could get signed and bring back for Andy. Sam was such a sweetheart, he was so earnest about getting Andy's board signed and trying to soften the blow for Andy - he's getting so grown up. Andy was very very happy with the skateboard and the boys were out all Saturday afternoon "dropping in" (are you impressed with my skateboard lingo?) to our driveway simultaneously. We owe the Mikulaks big time. It was fun hanging out with Melissa too. We get to compare throw up stories, riduculous hospital waits, pill taking, etc.
Neil is currently in Vermont with a group of parents and doctors meeting to try and make our wish come true. I just talked to him and he said the meetings are going very well. He left Saturday night and comes back on Tuesday.
Saturday soccer update. We got crushed again on Sam and Dad's team. The other team looked like monsters compared to our guys. Sam played goalie for a while and it was the first time I was nervous on account of his port. The other team had some serious power and I was envisioning a port explosion but thank goodness all was fine. The past three games and practices we've had the help of Lori Emerson coaching. She is just awesome and so good with the kids. She is a very calming factor in contrast to a lovable but excitable coach (whose name shall go unmentioned). We are getting much better though and I know we'll win a game soon (as soon as we play a team more our size). Andrew is on fire on the soccer field . Last week he scored four goals and this past week he scored two. All he had to do was score one goal andhe completely came alive on the field. He dribbles the ball all the way into the goal - no long range shots for him. It's so funny because he's gone from dejectedly telling people that he never scores any goals to now telling everyone that he's the best guy on the team. Charlie runs around the field trying to get back to the swing set. If I bring him over to the sidelines and put him down thinking he 's far enough away from the swings he turns right around and trots as fast as his little legs will carry him back to swings. He's shakes his head at you every time you try to take him out of the swings. He also loves to run around kicking the ball. The only thing that will stop him in pursuit of the swing is if he spies a ball in his path. He does his best to keep up with his brothers and is still biting them when they take anything away from him.
Two funny quotes from Andy: As I was chasing Charlie back to the swing Lori Emerson kept an eye on Andy for me. He walked up to her and she said, "Your mom will be right back she's just chasing Charlie." Andy said, "Yeah he is one tricky baby and he's hard to handle." Then as I'm driving him to school today a guy made a sharp turn in front of me and I had to hit the brakes. Before I could say anything Andy comes out with, "Hey ya moron, learn how to drive." He got that from an excitable driver in our family whose name shall go unmentioned. I said Andy, you can't say that. That's not a nice thing to say at all- even if you hear it from Mommy and Daddy- we need to stop saying it." He says, "Yep, that's where I heard it- just doin' my job."
Sam is a rock star a school this week because he got to meet Tony Hawk. His ankles have been hurting him after running and soccer which of course terrifies us but it's on the top of the ankle and the achilles heel area so it might be a cleat issue. His numbers still look good. MIBG scan is on October 11 per the Texas protocol. We'll of course keep you updated. (Sorry for typos/spelling -Macromedia doesn't have a spell check that I can figure out and I never have time to edit properly and cut and paste into Word). I usually wake up at three in the morning wondering if I've spelled "acutely" or some other such word correctly. Margot September 17, 2007 Are you aware that September is national Pediatric Cancer Awareness month? Before Sam was diagnosed I was vaguely aware of pediatric cancer in the sense that I gave money when I saw telethons and dropped off a toy at preschool at Christmas for Children's Hospital. fter our pediatrician said the ten words that turned our world upside down, "Sam has a tumor and it's spread to his bones, " of course I became acutely aware of pediatric cancer. As someone who works in publishing, I'm often looking for a hook that's going to make an editor want to buy a book, a title that going to make people grab the book off the shelves. The "For Dummies" title (and great writing) put the first computer book on The New York Times bestseller list. I was pondering while running this morning what the hook would be that gets pediatric cancer, and neuroblastoma in particular, some attention. What is going to make the founders of Google say, "Wow, Bill Gates and Warren Buffet have education and African diseases covered on the philanthropy front, and look, these kids with Neuroblastoma are given the same chemo they were giving them fifteen years ago. That's criminal. We could give them a much better quality of life and save thousands of lives if we give $100 million to pedatric cancer research." What is going to make Paris Hilton say, "Gee, jail has made me a better person. Instead of buying ten $5,000 hand bags this year, I'm going to give $50,000 to pediatric cancer. " What will make ordinary people write /call/email their congressman and tell them to pass the damn Conquer Childhood Cancer Act ? Will it be ugly statistics like those below?
SOME FACTS ABOUT PEDIATRIC CANCER:
Will it be a link to Christi Thomas's website http://www.christithomas.blogspot.com so that people can read how impossible it is for this wonderful family to cope after the loss of precious Christi? Will it be the happy image from this past weekend of 47lb Sam taking the ball down the field with the other team chasing him, scoring the only goal for his team and throwing his hands up in victory and running back down the field with the hugest grin on his face? (Brandy Chastain, except for the ripping off of your shirt, you got nothing on Sam!) Don't ask the score please. You tell me. If you call your congressman, tell 'em Sam Hutchison sent you. More soon. Margot
September 10, 2007 School Days Sam had a great first week in school. He has Mrs. Gage again (hurray) because she moved to 2nd grade. He loves his new classmates. He took a picture that Tony Hawk signed for him in for sharing today. He was very excited to show it to everyone (thanks again Mikulaks for making that happen- still need to get the thank-you note off to Tony for all of stuff he sent). We are officially back in the routine of things. Sam's stomach is much better, his bloodwork and urine looked good last week. His hearing aids have been giving some feedbackand I thought it was just becasue the molds are getting too small again but I noticed today that the tubing on one side is brokern and barely hanging on. I did a very high tech fix this morning with scotch tape. Luckily we see our audiologist on Thursday. Since we only have the hospital one day after school, we've been walking home every day which Sam loves to do. For the Texas trial we have another blood draw on Wednesday and then another in two weeks. Dr. Myers said that ten days after the infusion is when the cells have been most active/effective.
Andy doesn't start school until next Monday. Neil and I have been joking that his preschool is like sending him off to college. There is a lot of paperwork to fill out, a back to school picnic, a back to school parents night,and a parent/kid open house. Andy is very excited to go next week and had a good time at the picnic on Friday. He has the same awesome teachers as last year too- Miss Gini and Miss Jen. He has been having a rough time in the afternoons because he's getting up so early to drop off Sam. There has been a lot of crying and"It's not fair!" coming from him lately but he manages to bounce back once he gets some sleep. He's off swimming with Grant at the Catamaran today and was very excited to go. They'll meet Beau there so the three muskateers will be together again.
Charlie is spitting out a lot more words lately. He's learned how to wave "Bye Bye" but it's a funny sort of wave. He doesn't spend a lot of time on it. He just flaps his arm up and down very quickly and then moves on to other things.
First soccer games were this weekend. The Aliens (Sam and Dad's team) had a rough time of it 0-4. Pretty Ugly. The Ermersons are going to help us coach this week so hopefully we will have a more successful second game. Sammy played goally in the second half. He
Things in general are good. Magic Water is gaining some momentum and we are planning some fundraisers. Patrick and Dina Lacey (dad and mom of the amazing and adorable Will http://www.willlacey.com and funny and insightful NB bloggers) have been a huge help. We are so glad they are part of the team. I'll update more soon. Margot August 31, 2007 Here are some pictures from our busy July and August at last. Still battling major tummy problems this morning. Sam was pointing to higher in his chest this morning so I just ran and bought and industrial sized carton of Tums. Hoping that will do the trick. We find out who Sam's teacher is today. Hope you enjoy the pics. Charlie working to get in as much of his birthday cake as possible
The boys with all of the Kuhn kids up at the park
The boys playing chicken with Claire Marie and Andrew Kuhn Thursday, August 30th, 2007 We are home from Texas - got in about midnight last night. Everything went very smoothly. Sam was a champ in the hospital and the Texas Childrens staff was great. Sam's tummy hurt after he ate for the four days in-patient and he threw up some on the night of the off day but otherwise was in good spirits the whole time. Andy and Charlie came and played with im every day and went back and forth to the Hannons (who were only five minutes away) with either Neil or I for hospital breaks. We hung out at Herman park some, the boys ran through the little water spray park they have there the first night and Andy and Charlie went back and did it again with the Hannons and I later in the week. Andy and I rode the train around the park with Charlie one afternoon and got rained on. It rained quite a bit while we were there and the boys loved watching the lightning. It's a good thing California is dry because Andy stepped in every single puddle there was. Ann nicely washed and dried his red Converse at least three times while we were there. On our off day from the hospital we met the Buengers http://www.erinbuenger.blogspot.com, our now no longer virtual NB friends, and my dear and most longtime friend Nicole and her son Wyatt for lunch. Erin Buenger is about the cutest little red-headed girl I've ever seen. She just sparkles and you can tell she's smart as a whip. It was great to meet them in person. It's a small world. Their son Davis goes to Rice and has Jim Hannon as his physics professor this symester. Neil told him not to worry, we'd make sure he gets an "A" :-). After lunch Neil got some work done and Nicole and I took the kids to Houston Children's Museum. I'm becoming quite the connoisseur of Children's Museums having taken the kids to at least six different ones now. This one was great. We closed the place down and the kids could have stayed hours longer. Wyatt is about six months older than Charlie (though they are roughly the same size) and he's so cute (they'll be buddies when they get older). We had dinner with Nicole and Wyatt and it was great to get to spend the day with Nicole. I almost forgive her for looking so young and well put together. That night as we were all going to bed at the Hannons Sam said. "I like this bed much more than a hospital bed." As we were going home on the plane he said, "I can't wait to sleep in my own bed." Something I might say. He and I watched Indiana Jones and the Raiders of the Lost Ark one night in the hospital and are now cracking each other up quoting the line from Indy, "Snakes, why did it have to be snakes?" and then his friend says in his Indian accent, "Asps -vedy dangerous, you go first."
The boys watched the lightning storm from the plane window leaving Houston last night and they were so cute (they each had a window seat - Andy in front Sam in back and they were yelling to each other "Sam, I saw it did you see it?" "Yeah, that was a big one!" I'm not sure how cute the other passengers thought it was but I don't care. Dear Charlie slept the entire two- and -a-half hour flight to Pheonix, woke up and ran around the Phoenix terminal for an hour and a half chasing his brothers, looking at airplanes, dancing with whichever brother was putting on a show for the other looking through the binoculars meant to look at the airplanes but turned inwards at the terminal on the dancing brother. Andrew's great line looking through the binoculars at dancing Sam, "Oh I see a dancing dufus." It wasn't all roses of course -they fought like bearcats at times and Charlie has discovered that biting people is an effective way to counter his frustration if they are not doing exactly as he'd like them to when he is tired and cranky. Sam had a spectacular throw up in the middle of the terminal right before our San Diego flight took off. He and I were trying to make it to the bathroom but didn't quite get there. If we could have been any more in the middle of things I don't know how. It's funny how that doesn't phase me at all. Sam wasn't phased either and said, "Sorry I think it was the chicken taco." All three boys slept the entire short flight from Phoenix.
Neil and I really debated on whether or not to do this vaccine because we had to stop even oral chemo for six weeks and since we got such great scans we weren't sure we should tinker with what is working. We were able to stay on Nifurtimox though whichis a big comfort and Dr. Meyers was awesome answering all of our questions and concerns. We are very glad we did the trial and if there was a good time for us to take the risk, this was it, having just gotten clean scans. Also, for NB parents who might be considering it, the nausea doesn't seem to be a common side effect. Sam's poor stomach is so shot. I think of his tummy enzymes like the rabbits in Watership Down (I'm reading it to the boys at bedtime -not sure how much they are catching but it sure is effective at getting them to sleep ;-) Little Fiver enzyme (who always senses danger) says to his brother Hazel enzyme, "I don't feel good about this. They are putting something into the blood." Hazel says, "Fiver don't worry, it's not chemo - that should be great news right." Fiver answers, "No. no. We must warn the lining of stomach -it's not in good shape as it is and something doesn't feel right about this"....
We cannot thank the Hannons enough. The week could have and would have been so much harder without them and their awesome support. To have such a comforting place to land was just fantasitc. Next up Labor Day Weekend and Sam's first day of school the following Tuesday. I'll stop promising pictures since I never seem to get them up when I say I will and I'll just surprise you.
Margot Later on August 24th, 2007 Oops. Except for the throwing up and nausea side effect. Yuck . Poor Sam. Neil and I just did the trade off after I spent the afternoon at the Hannons with Charlie and Andy. It's about 9pm and Sam is sleeping. August 24, 2007 We are in Houston at Texas Children's Hospital. Sam is about to be infused with his CD45 anitbody. It's a seven to eighthour infusion for four days. He's been triple medicated (tylenol, benadryll, and steroids)to protect against an allergic-type reaction and he'll get benadryll every four hours druing the infusions. They expect him to spike fevers during the CD45 infusions but aside from that, they are not expecting any side effects. I'm writing this update from in Sam's hospital room. Free WiFi in every room, man will we be spoiled when we go home. Sam and Andy are playing on the Playstation and dad and Charlie are out getting some games and books for us.
So far everything is going very smoothly. The kids were great on the flight out here. We are staying with the Hannons who are fantastichosts and very good sports to let Hurricane Hutchison land at their home. They took us to a beautiful park last night where the boys ran around and got out all the pent up energy from sitting on the plane all day. Andy is riding in the wheelchair every time we go for an X-ray or test making people very confused as to who the patient is. The novelty on the wheelchair has long since worn off for Sam but Andy likes it.
Houston is hot and sticky. Neil is an anomaly of a human being in that he loves the heat and humidity. Everyone here looks at him like he's crazy when he enthusiastically tells them how much he loves the weather here.I'm going to unplug the kids now and make some foam animals we brought to pass the time. Sam is not so keen on staying overnight. I think the worst side effect will be boredom but with all the benadryll, he'll be sleeping quite a bit. It sucks to be in-patient. There is an added fun factor now that Charlie is such a busy guy. He is going with the flow as usual but makes it very clear when there is something he feels he needs to do. He's talking up a storm but only he knows what he is saying most of the time.
More soon. Margot August 14, 2007 Sam's bone marrow is clear. We are officially NED (No Evidence of Disease). We were on cloud nine for a few days. We've since come down to cloud six because we know the realities of this disease -but I must say that the view from cloud six is very nice. Neil and I keep elbowing each other saying things like"Doesn't he look great?" "Look at him run!" Before the scans we were saying things like "Does he look pale to you?" "Is he limping?" Does it look like he's favoring that leg a little?" Psychology is a funny thing.
We are leaving in one week from today for Houston for the vaccine trial. Sam will be in-patient for four days then we will have a play day in Houston and on day six they will infuse the vaccine and then we will come home in time for Labor Day weekend and Sam's first day of school the following week. My friend Nicole, who lives in Houston told me yesterday it was 102 degrees with a heat index of 112. Fun fun. >The kids have been in heaven the past couple of weeks. The Kuhns were in town for a week and we did the beach, soccer in the park, dinner out, and they took Sam and Andy on their own to SeaWorld. The boys had four older, cool, doting kids play with them for almost a whole week. Elizabeth, Joey, Andrew and Claire Marie are wonderful kids- a product of great parenting. Thank you Kuhn family! Speaking of great parenting, we were at The Wild Animal Park with our cousins Maddie and Emily and Grandma Joan and Andrew was affectionately calling Maddie a butthead at the top of his lungs, as he did to both Emily and Maddie the enitre time they were here, and Grandma Joan walked by an older gentleman who was saying to his family, "Horrible. Horrible. What kind of parents let their children speak like that?" Needless to say, I'll be glad when the "butthead" phase is over. It sure has lasted a long time. Maddie and Emmy and Grandma Joan arrived the day the Kuhn's left and the boys had Maddie and Emmy and Grandma to dote on them for a week. The girls were wonderful, such great big cousins. We just loved having them and Grandma here. We miss them already, though I'm sure the boys thoroughly wore them out.
Charlie Boy turned one on the 11th. The year sure went fast. I can't imagine our family without him. He's brought us all so much joy. He's into cars and trucks and makes little vroom noises. He loves his books and all things ball. He's starting to assert his will now and let's you know what he wants in no uncertain terms. We were all swimming yesterday and I was going under water popping up and saying boo to make him laugh and after I stopped he started grabbing me by the hair and trying to shove my head under water so I'd do it again. It was funny. He's a very physical guy -affectionate-wise and pushing-people-off the-chair-he-wants-to-be-on-wise.
I had a funny conversation with the insurance company today but it was not not funny as in Ha Ha. Neil asked me to call and make sure we are covered for the vaccine trial. All costs for this particular trial are covered by Texas Childrens but we wanted to make sure we have back up if needed - say Sam falls and breaks his arm while we're there. We are covered for that by the way, but in the course of the phone call, I was asking how we go about getting clinical trials approved. We switched to a PPO in January so we'd have more flexibilty for clinical trials. So the agent said, "Let me check under "clinical trials" and see what it says. There's a header here in your plan. Oh. It says clinical trials are not covered under this plan." "What?" I say, "That can't be. We've been on clinical trials since we were diagnosed." "No, your old HMO plan covered clinical trials but the PPO does not," she calmly tells me. "But we're paying more on the PPO so we can have access to more clinical trials," I stammer. "Well, some PPOs cover clinical trials but this particular one does not." Ohhh Kaay. As Neil said, let's just stop all treatment so we can get our PHD's in insurance. Good we found this out now I guess. We are working on changing the plan obviously.
I know I promised pictures, I'll try to get them up tomorrow. I really need to streamline my picture process as it involves emailing them from one computer to the other but for now I'm off to PeeWee sports and Andrew's soccer practice. This is probably full of typos. I'll edit tomorrow when I post pics.
Margot
August 10, 2007 The following is directly from the official MIBG report we received today: FINDINGS: There is physiologic distribution of radionuclide throughout the body. No evidence of metastatic lesions. The previously seen small foci of increased radiotracer in the left distal femur are not well seen on the current study. **************** Did you catch the "No evidence of metastic lesions" part? Hurray. Hurray. To say that we are thrilled is an understatement. I think I showed the report to every nurse in the clinic with tears in my eyes. I'm running out the door as usual but had to get this up. Sam and I just got back from the bone marrow aspiration and all went fine. We should have results by tomorrow but we're hoping (an educated hope now) that we'll be clear.
As of yesterday our vaccine is ready at Texas Childrens and we're set to go there two weeks from today for the vaccine trial.
Pics and details of our awesome week with the Kuhn (or "Cocoon" as Sam calls them) family and Grandma Joan and our Michigan cousins soon.
Margot August 1, 2007 Just a quick update to say that Sam's numbers yesterday were beautiful. VMA 2.(something) -sorry don't have exact numbers handy- HVA: 7.(something) LDH 647. Since we haven't heard from Texas Childrens, we've gone ahead and scheduled scans for next week. MIBG is next Wednesday and bone marrow biopsy (yuck) is on Thursday. Sam is doing great though chemo really knocked his stomach last week and he's still not eating as much as I'd like (better this week than last). We've been doing lots of fun summer stuff (Water park, Legoland, going to feed the ducks and the fish at Paradise Point, Concerts at the Park,and then last night dinner at the Catamaran with the Bonebrakes. Yesterday Sam went to school with Andrew had so much fun he asked me if he could go to school everyday with Andrew. We've packed so much in that as I'm putting Sammy to bed at night he says to me, "Now what fun thing did we do today again?" Needless to say, he's not eager to go back to school. We are lucky. So lucky. Last year at this time, Neil was in New York meeting with doctors trying to figure out a plan for relapse and Sammy and I were meeting with doctors here trying to figure out whether we should do a biopsy on his leg -and I was hoping Charlie would stay in my belly long enough to get all of our necessary hospital visits in. Two years ago we were in the middle of Sam's stem cell transplant and he was very sick. He received his stem cells on August 4th. In comparison, it is wonderful to be able to write about nausea today and to be going into scans with good numbers.
Happy Anniversary today and Happy Birthday tomorrow to Neil -our family hero who shoulders so much for all of us. We love you!
Please keep in your thoughts and paryers the families who haven't been so lucky in the past months: The Gentry family who lost the amazing Nathan last Sunday. He will be forever seven years old: http://www.caringbridge.org/co/nathanmichael, The Saxon family who lost beautiful smiling Paul on July 14th: http://www.paulsaxon.com and the Mckeans who lost wonderful, redheaded Nate forty days ago, Carter Finger's family has just made the difficult decision to stop transfusing him http://www.caringbridge.org/pa/carterfinger. It does not do these children and courageous families justice to mention them in a paragraph, they are all unique beautiful kids so please take the time to visit their sites and read their stories and realize what gifts neurobalstoma is robbing from this world. Nate McKean's site is no longer up, it is too painful for his parents but please do keep them in your thoughts. Margot
July 24th, 2007
We finished day two of chemo today. Sam's LDH yesterday was 614 - still going down. Hurray. Perhaps we shouldn't freak out so much over each change, but then that is our nature - we are freaker outers. I guess you'll just have to keep that in mind as you read updates of me freaking out. They pulled a sneaky trick on me and narrowed the normal range as soon as Sam turned 7. It is now from 420 to 750 instead of from 400 to 900 -giving me much more opportunity to freak out.
Sam did well and I finally wised up today, it being Tuesday, that since we are only doing two days of IV chemo now, there is no reason for me to schedule the first day on a Monday. The reason being that it's only a half hour infusion but we spend most of the day in the hospital on Monday because the clinic is a freak'n zoo and we have to wait for a bed, an IV pump, etc. Whereas today, we just breezed in and out relatively quickly and got to chat up all our favorite nurses. I was so used to scheduling the first day on Monday because we always had five days of chemo to get in that I just kept doing it. As Andrew is now very fond of saying, "Duh!" (what is he, 15?). Sam is doing well though he threw up on the way to the hospital this morning and then cheerfully said, "At least I didn't get any on my shirt." In fact, he's such a pro that he didn't get any anywhere but right in the bag I panickedly threw him. As I held the bag aloft with one hand I pulled into, you guessed it, the very same 7/11 whose bushes we've avialed ourselves of for bodily fluids many times -I got to use the trash can today. Sam laughed as I was driving one-handedley and said, "What if there was a hole in that bag?" "We'd be screwed," I answered. Not sure if that would make a good large Hefty Ziploc commercial or not. As I watched the chemo drip into Sam and cursed and appreciated it all at the same time, I fantasized my own little version of 1984 but it was: 2015 (The Medical Version: Big Bother of Cancer):
Sam walks in to the hospital with Mom. There is no waiting as there are very few kids and kind nurse says, "Right this way Sam, we are just going to take your picture quickly." Click! A picture of the inside of Sam's whole body lights up on a big 3D screen. "Uh oh!" says kind nurse. Sam's got some cancer cells in there, see them? They light up as green with our special non-invasive, non-toxic, vitamin giving camera. Let me just shoot these anti-oxidant lasers right at those little buggers and they'll be zapped forever. This lovely camera doesn't harm a single healthy cell." "But," says Sam's mom, "What about the rebel cells hanging out smoking behind the gym just waiting to come out and wreak havoc on the honor student cells?" "Oh says the nurse, this camera lights up every single cell so there are no rebel stem cells that will ever come back." "So that's it?" says Sam's mom "that's the whole treatment?' "Yep, he's cured forever. Can you believe they used to give kids chemo? How barbaric."
Then I take the fantasy further: Mom walks in with all three children and Dad. Kind Nurse says, "We are just going to take a family photo here." Click. "Hmm. See these little purple cells? They have the potential to go berserk and multiply -what we used to call cancer before we cured it, we'll just zap them so they don't cause any damage by dividing. Oh and Sam, you had cancer before we created this easy one step cure? You had chemo and your hearing is damaged? Just take this little pill and all the cochlear hairs will grow back and your hearing will be good as new. And if you take this little pill, it will ensure that you are not sterile and can produce healthy sperm. It tastes just like bubble gum." ********************************************************* I can dream right? We had a fun weekend, went sailing and to the circus with the Mikulaks. Thanks to the Millers for inviting us on their beautiful boat. The boys had a wonderful time, both got the steer the boat and be captain for a while and they had a great time with Hannah and Max. We left Charlie as he's a busy almost one year-old and I was afraid he would either topple overboard or squirm and scream in my arms wanting to get down and topple overboard enough to make it very unenjoyable for me. He hung out at the Monacos. Thanks Colleen. The Cirq-de-Symphony was great. It was part of the Summer Pops put on by the San Diego Symphony and it was a great way to get the boys to listen to classical music. They had all of the amazing acrobats performing in front of them giving them something to look at while they soaked up all that culture. Thanks to Megan, a mom from Hannah and Max's school, we were hooked up with parking passes, awesome seats, and the kids got the meet the performers and tour back stage. Thanks, Melissa for thinking of us. I was telling one of the nurses about it and she laughed and said, "Yeah, wow, if you had two cancer kids together you could've probably had anything you wanted." It made me laugh.
Will post this week's VMA/HVA levels as soon as we get them. They were taken today. I'll try to post some pics of the kids on the boat as soon as I can.
Margot
Margot July 13, 2007
Happy 7th Birthday to Sam, our amazing little (getting big) boy! Sammy, you are our inspiration. You have a wicked sense of humor and a quick smile that goes straight to the heart. I love to watch you laugh (a couple of nights ago you were laughing so hard at Charlie Brown that you couldn't breathe very well). You are shy with people who don't know you but anyone who takes the time to get to know you is always a fan for life. You are so mechanically smart that you can fix things and figure out puzzles and mazes way beyond your years. You have always been freakishly coordinated (rode the neighbor's razor scooter at age 2, rode a bike without training wheels on your 4th birthday and can hit a ball pitched anywhere near your strike zone). You are becoming quite the skateboarder these days. You are my fashion consultant and always help me pick out what to wear if I'm going somewhere. You always want to wear the latest and coolest stuff and are an Imelda Marcos of shoes (you are currently out with your father and Andrew trying to talk Dad into buying you new colored Converse for your birthday). You remember things about people and what they like and what they wear, details that we are amazed you catch and you are very kind. You are a great big brother. You love torment both your little brothers (and me) but you produce acts of kindness towards all of us that take my breath away. You are very persistent and will try anything (including different types of food). You have taken what would bring most adults to their knees in stride, mostly with a smile and just get on with it. You take 40 pills a day without complaint and are proud to show people that you can now take 4 at a time. I've seen you throw up and then run out to play with your brother and your friends as if nothing is wrong. Your father and I sometimes want to shout from the rooftops about how wonderful you are and what an amazing spirit you have even after all you've gone through and are going through. We want the world to know that you are our hero and our friend. You have skipped soccer camp for the last two days and I couldn't get out of you why you didn't want to go but I think it has something to do with your birthday wish that you wrote last night with your tutor: "My birthday wish is to run faster." I would give anything to be able to give you your wish.Your daddy is working so hard to find medicines that will give you your speed back. You didn't dwell at all though. As soon as your tutor left you said to Andrew and I, "Come on, let's go outside and play basketball" and we did.
Sammy, we love you and we are so proud of you. You teach us how to live every day.
Love,
Mom and Dad Happy Birthday too to Hannah Mikulak who turns eight today! We can't wait to go to the circus with you!
July 11, 2007 Sam's LDH is steadily on the rise. It jumped to 704 last week and was measured at 743 yesterday. Though we are still within normal range, the trend is not good. We did a VMA/HVA yesterday and should get results back tomorrow or Friday. A couple of people have asked me lately if LDH is a cholesterol level so I thought I'd better explain what it is and why in correlation with several other things, it can be used as a cancer marker. LDH is Lactic Dehydrogenase and is part of a blood chemistry test. It is a measure of tissue breakdown. All cancer cells produce LDH as part of a high turnover rate with destroyed cells. It can also be a measure of cardio problems and other things but for our purposes, in conjunction with other blood and urnine tests, it can be a good NB marker. There are some experts that don't pay it any mind but most parents and doctors keep an eye on it. I'm trying not to panic. Sam is feeling great, he's actually at soccer camp all week and loving it. He asked me today in the car if when he finishes chemo, he'll get his speed back. It broke my heart. I told him again about Lance Armstrong, I didn't tell him that he's had about a bajillion times more chemo than Lance and I didn't tell him that I don't know when we'll be finished with chemo. Texas Children's is still growing our vaccine. Sam's cells are slow going due to all the chemo he's had. They think his vaccine will be finished in a couple of weeks and then they'll do a couple of weeks of safety testing. So, we may be in Houston in August. I hear that's the best time of year to be there (ha ha). If the VMA/HVA comes back high we may schedule a scan before Houston so we know what's going on. I read today that strenuous exercise can casue an elevated LDH and he got his blood taken right after soccer camp yesterday so I was trying to talk myself into the fact that he's done some strenuous exercise before blood tests for the last three weeks. See what a good rationalizer I am? LDH can also be elevated when a lot of cancer cells die, i.e., treatment is working. I'm trying to talk myself into that one too, though it's usually at the beginning of a treatment. However, worrying must take a backseat. Friday is Sam's birthday and we have a lot to celebrate. He wants to go to SeaWorld at night on his actual birthday, Saturday is his party and Sunday is the Wild Animal Park. It will be quite the weekend. Sam's very excited. I'll post more on that Friday and Saturday. Andy is doing fine. His new word, thanks to his new obsession with BenTen, is "dweeb" and he keeps calling everyone a dweeb. He and Sammy are trying a tutoring program together and they like it. It's an hour two to three days a week. Thanks Meryl, for the recommendation.Andy has also his little summer school/camp Tues/Weds/Thurs afternoons so we've been running from here to there with all the kids a lot. Little Charlie has been fevery and miserable the past couple of days. It's not an ear infection as I thought, it's some kind of virus that's going around that he caught, according the pedatrician. Poor little guys just wants to lay around and be held by someone. I'll post VMA/HVA as soon as I get them back.
Margot July 3, 2007 Ahhh.....
As I 'm sure you've surmised by now, our life in California moves at about 100 miles per hour. While the boys stayed at that speed in New Mexico, I slowed down to about 5 miles per hour and took a breath for a week with no crazy agenda. After having a sweaty, cursing fight with the car seat in Albuquerque at the Budget parking lot during which Sam and Andy were helpfully advising from Grandma Sara's air-conditioned car, "Count to ten, Mom!" "Maybe you should go to your calming down place!" and "Isn't that a bad word?" I ended up switching to a roomier van, clicked in the car seat and drove the kids up north to Pojoaque. As soon as I came over the hill and saw the red barrancas set against the deep blue sky, I let out a sigh of relief. I drove the car up the dirt road to our house, hugged my dad and Stephanie and then Stephanie led me to the hammock in the back yard under the cottonwoods and brought me a margarita. The boys had space. They played with the dogs, chased the chickens, found fresh eggs, played croquet, baseball and badmitten in the back yard and generally were outside all week with no video games in sight. Sam played chess with Grandpa, Andrew chased away imaginary coyotes and Charlie became involved in everything he could find. He reminded me of the guy in Sixteen Candles who's parent's tried to drop him off at the dance and he bangs on the doors yelling, "but I want to be with you guys." Charlie does not really buy in to the concept that he's only ten months old. He said his first official word on our trip, "dog." We went horseback riding on Monday and the kids loved it. Sam rode Hershey and Andy rode Reggie. After the boys rode, I went out on the barrancas with Stephanie's friend Talisa for a quick ride. It was so pretty and relaxing.
Maureen came in on Tuesday and we all went out for some great New Mexican food at Rancho de Chimayo that night, an old family favorite. To Maureen's dismay, we took her on a camping trip with us on Wednesday up to Conjilon Lakes. She was a great sport though and we were all very happy to have her along. We stopped at Echo Canyon on the way where the boys yelled "You are a butthead!" against the giant curved rock wall and heard it echo back at them numerous times. I yelled all three of the boys names at the top of lungs with the irrational thought that it would ensure them some permanence on this earth. The boys got to sleep their first night in a tent, Granpa took them fishing and they got to roast marshmellows.Charlie walked around the campsite getting dirt from head to toe and banging on things. Sam caught three fish (two of the biggest). Though he started out strong, Andrew was in a tired funk by the time we started catching fish and didn't catch any. Charlie played with Maureen by the car most of the fishing time or rode in the backpack on my back.
Andy,Charlie, Grandpa and Maureen around the campfire
We came back from camping and Maureen and I had a day in Santa Fe with Charlie, then we drove up to my mom's in Albuquerque and she had a little party for us Friday night. I got to see my old friend and croquet partner, Lonnie Sisson. He's a fantasitc guy, not to mention a brilliant artist and it was great to see him and Judy. My mom invited three boys from down the street the same age as our boys and they had a great time together. Meanwhile back on planet cancer, Neil was at the FDA meeting in Washington serving as the parent liason for two days of last week. He said he was very glad he went. He also got a little time to himself. We were all very happy to see him and Charlie has been clingling to him for dear life since we've returned. I'm trying to think up event/promotional ideas for Magic Water. I keep thinking I should do something dramatic like stand outside of the Whitehouse with a sign so the press will be all over it and call me the crazy cancer mother and I'll start a pediatric cancer revolution, but realistically, work and our three young children stand in the way of that plan. I'm open to other ideas though.
Sunday was Joe's birthday and the boys were happy to be back for the party complete with jumpy and cake. Yesterday Sam and I were at the hospital from 8:45am to 7pm. It was the long first day of chemo made longer by the fact that it's 4th of July week. Also when we go the counts back, we found out Sam needed blood (three hour infusion). Sam's LDH was 643 (uncomfortably high for Neil and I but HVA and VMA were good last week so we'll wait until the next blood draw before we panic). Max was in the clinic too getting blood and the boys watched a movie and played some games together while Meilissa (Max's mom) and I talked about shoes - just kidding we talked about cancer therapies of course.
Tomorrow is the 4th of July. . Next up- Sam's birthday. Lot's of excitement and a big surprise for Sam on the Sunday following thanks to the Wild Animal Park . The boys are very excited that Grandma Joan is coming with our soccer star cousins Emily and Maddie Hutchison in August. Shaping up to be a good summer.
Margot July 21, 2007
June 21, 2007 Happy Official first day of summer! The boys are jumping in with both feet. They just got back from Anthony's birthday party complete with jumpy and water balloons. They have Luke's sports party tomorrow and then on Saturday we leave for New Mexico. Sam's last day of school was on Tuesday and they had a big picnic in the park. Sam played soccer almost the whole time. He was very happy to sleep in these last couple of days. Both boys are very excited about their vacation and going camping and fishing with Grandpa. Yesterday we had a blood draw and the numbers are all good. LDH is 579, down from 589 the previous week. C-reactive protein is the lowest it's been since we started measuring it (see a previous psot for an explanation on that). We'll get the IL6 and IL10 and VMA/HVA in a few days. Sam also had the audioligist yesterday to make sure his hearing hasn't deteriorated. It hasn't. It was stable and even a bit better. It breaks my heart a little to go to these tests with him and listen to the beeps that he just doesn't hear. Even with his hearing aids, I can tell in the high frequencies he's tyring to decide if he hears something or not. With his hearing aids, he can repeat back 65% of words at a normal conversation level. She says things like "cupcake" and "popcorn" and he has to repeat them back to her. He tries so darn hard. Even the words he can't get, he tries so hard to figure out what they might be. I realize he figures out a lot from context and he really needs his FM system in school. He's a smart cookie though and not a quitter.
Andrew is doing theatre camp and really liking it, though he got to skip it today to got to the birthday party. Tomorrow they do a performance for the parents. Can't wait. Andy said they only have ballerina dress up stuff and since the other boy in the class dressed up, he did it too. He said they twirled around and bonked into each other. Typical. Now don't use this as backmail when Andy is older. I took the boys and Samantha to go see Fantastic Four last night while Neil entertained Charlie. If it wins any "best screeenplay" or "best actor" awards at the Oscars, I'll eat my hat, but the kids loved it. Sam and Samantha are so cute. They shared a box of junior mints together and I could almost fast forward to Sam's first date. Sam said,"Samantha, do you like junior mints?" "Yes? Would you like to share a box with me?" "OK. Mom, we'd like a box of junior mints." It killed me. Andy will be happy to tell you all about the Silver Surfer.
I have been frazzled lately running from one thing to the next -trying to make the doctor's appointments, camp, stay on top of work, etc. I had a banner day on my birthday. I locked Charlie in the car and the Fire Department came and got him out for me. It was a hot day and I didn't think I should wait for AAA so for the second time in the space of a month, the Hutchison family tested the response time of 911. They came in about 3 minutes and were very very nice. Charlie was completely unfazed, he played peekaboo with me, laughing until the firemen got there and just smiled at them all as they got the door open. He was only slightly sweaty when I lifted him out of his car seat. Nice going, I know. My mom called me today to remind me not to back over any of my children in the driveway. Thanks Mom. Charlie is such a joyful guy. The pic above really captures him. He's very earnest too, he's started this half scream-half grunt when he's pulling on something he wants and can't quite lodge it free. We're off to New Mexico on Saturday for a week so check back next week and I'll have vacation stories and pics. I know I promised I'd post last Friday and didn't quite get to it. Oops. Happy summer everyone. Margot
June 8, 2007 Wow, a lot to update, June has been quite a whirlwind so far. Monday morning we wrapped up the Coins for a Cure fundraiser at Sam's school. TeamSam rode in with their new TeamSam jerseys on and thanked all of the kids for all of the money raised and gave Sam his own TeamSam jersey. It is very cool. The total came to, drumroll please.......over $4,000!!! There is no way to sufficiently thank Lori and Gary Emerson, Sue Divicariss, the Swami's and all of the kids and families who donated. We were overwhelmed by everyone's generosity. The money will go to The Penelope and Sam Fund and is being used to help start a Nifurtimox trial here at Children's San Diego. The bike race is on Sunday and for all of our lofty aspirations of going all the way to Flagstaff in an RV, we will end up going to Oceanside in our minivan to see the team off (which Sam is very excited about and plans to wear his jersey to) and then we will follow them on the RAAM web site: http://www.raceacrossamerica.org/. They invited us up a couple of weeks ago to watch them train at night. They were riding up Torrey Pines Hill (which is a killer, I used to run it when I was in better shape). Andy and Charlie were asleep in the car but they told Sam and Neil and I, they'd be up to the top in eight minutes and down in two, then they zoomed off and shot up the hill and were back before we knew it. When we told them how amazing they are, they casually said, "Oh, we're not even the hill climbers on the team, those guys can really move." GO TEAM SAM!! Monday night my Aunt Carla and Uncle Andy came in to town and played with the boys a bit and took Neil and I out to dinner at Georges. It was really nice to get and spend some time with with them and it was the kind of dinner with with wine and coffee and everything- no kids menu-it was a amazing. Great to see you Andy and Carla.
Tuesday was Sammy's field trip to Legoland. I was a driver and I brought Andy. I was regretting the wine part of the previous night's dinner after about the fifth rollercoaster. I had Joe, Sam, Andy and Wyatt and they were taskmasters in terms of the rollercoasters. Sammy's energy was fantastic. I think it was his best field trip yet. They all got to drive the Lego cars. You have to be six to drive the big ones but I didn't want Andy to have to wait in line for the little kid cars so I told him, "Andy, when the lady asks you how old you are, you say six, OK? You have to be six to drive these cars, and we're going to pretend you are six." This caused Andy some confusion and brought on all sorts of consternation from Joe and Wyatt. "What, Andy isn't six! Why are we going to say he's six?" Sammy just gave me his little smile and nod and eyebrow raise and started practicing with Andy asking him how old he was.The kid is a master of deception. It was a tense moment when she actually asked him. I wasn't sure how he would perform and if he did, would she believe him or look at me and say, "This kid isn't six!" I was thinking, "Will they kick me out of Legoland? What will I tell the other parents and teachers?, I was trying to get Andy and the other kids to lie about his age so he could drive the cars?" What he said when she asked him was, "Uhhhhhhhhhhhhhhhhhhhhh, I'm six." then he turned to me and said, "I'm six right Mom?" "Yup," I said. This will all probably come back to bite me later in life but since I'm all about living for the moment these days, I won't worry about it. Andy did fine driving aside from having to be moved from the wrong side of the road a couple of times. Wednesday Andy got to visit Sam's classroom and he loved it and Sam was so excited to have him there. Andy was a little nervous in the morning but Sam so wanted him to come that he said, "Ok I'll go." It was the high of both of their days at dinner time. I must pause here for a second and say a few words about Mrs. Gage. She is just awesome. Aside from being a damn good teacher, which she is, she is just about the gamest first grade teacher there is. The kids bring her alligator lizards from their backyard and she puts them in a terrarium so they can feed them. She catches when they get loose even though she is not a lizard fan. Sam's class got to hatch chicks this year, make mummy masks, and do all sorts of fun inventive stuff.
After school Sam had a blood check and Andy had his end of the year party for preschool at the beach - The Beach and Tennis club no less. Neil took Sam to the blood check (more on the results below) and they met Andy and Charlie and I at the party afterwards. It was lots of fun for Andy. He and Beau and Grant ran in and out of waves and made sand castles and basically swam until their lips were blue. Charlie, (Ah, you were wondering when I was going to get to Charlie) got completely covered in sand and had a great time doing his little Yoda walk all over the beach. He is a busy happy guy. He is a big laugher these days and so so sweet. He is absolutely a third child in that he gets dragged to all of his brother's events and he's already had cake and ice cream at birthday parties -no first year applesauce carrot cake for him. Chocolate cake will be old hat by the time his first birthday rolls around.
Sam's numbers: ANC 1500 Red Blood: 8.5 Platelets: 76 (not sure why so low) LDH 550 (good) We are also measuring his copper, cirruloplasm, IL6, IL10, and C reactive protien these days. Copper and cirruloplasm are both well in the normal range since we've been taking tetrathiomolybdate. It was high so it's good that it's down because (sorry about this, I'll get Neil to fill in) somehow cancer uses copper in the blood to grow itself more blood supply and (I think) it signals the blood to make more copper. By lowering the copper levels, you are cutting off blood supply (anti-angiogenisis). The C reactive protein was down as well which is good because it should mean that the IL6 is down. IL6 goes into the liver and produces c reactive protein. IL6 is used by cancer to divide and mulitply and the cancer cells and IL6 create what is called a paracrine cycle. Cancer signaling the body to create more IL6 which it uses to create more cancer which signals for more IL6. This is my very muddy understanding of the new things we are measuring in Sam's blood. Anyone who needs more clarification, please email Neil. He explains it about a1,000 times more clearly.
Yesterday was Andy's last day of school. He has a week off and then starts theatre camp and then the last week in June, Sam, Andy and Charlie and I will take a trip to New Mexico (wohoo!) while Neil is at the FDA meeting in Washington DC. Sam starts chemo next week again. He's out of school on the 19th and then we will get ready for his 7th birthday party in July.
Off to fetch Sam from school. I promised I'd bring his bike today so he can ride it home. Sorry for typos.
Margot May 19, 2007 My dear friend John London and his wife Catherine lost their daughter today. Penelope was diagnosed with neuroblastoma in October, 2003 and pioneered many treatments. Her parents funded the University of Vermont nifurtimox trial which will prove to have the best response rate for relapsed neuroblastoma kids when all is said-and-done. John did more to help other kids than any other parent and worked tirelessly to get more therapies into the clinic. His hero, though was his daughter. She loved watching the Food channel on cable, adored her little brother Oliver and her older sister Isabelle, and would play endlessly with her mom & dad. I had the good fortune to meet Penelope twice. The first time, at CHOP, I scared her because I talk loud and move fast and so when I would call and talk to John, he would often turn to Penelope and say he's talking to his friend Neil - "you remember him Penelope, the loud guy!" We played Play-doh together and dressed some dolls and hung out for a bit. Her dad and I wore baseball caps with a big P on them - he had shaved his head and it scared her so we bought some hats from the U of Pennslyvania bookstore and called them our Penelope hats. I have my Penelope hat on today - I wear it alot. Two weeks ago, we lost Bryan Tressler. I was friends with his father also. He has handled his son's death with a grace that I think we all wish we had. Two very, very loving families have huge holes in their hearts. Death from neuroblastoma is horrifically painful. I mention this because we have to find a cure and if there is a more noble cause than saving kids from this horror, someone better show it to me quick. If you want to help, please visit the link below http://vermontcancer.org/index.php?page=penelope-and-sam I can guarantee that it will spawn more innovative treatments than any other program in the United States. You can read about Bryan at www.caringbridge.org/ny/bryan. You can read about Penelope at www.caringbridge.org/ny/penelope
Neil
May 15, 2007 Sammy has been feeling great and this past week and a half off chemo, he has been running around doing normal kid stuff. I can't remember when I've seen him with this much energy. This past weekend we decided to get out of Dodge and we pricelined a hotel in Palm Springs and got one with a 40 foot water slide. We took off early Friday. The kids had a blast and went down at least a thousand times. Even Charlie went down a couple of times with Andrew and I while Neil was packing up our room in the morning. Sammy was tall enough to go on his own but Andrew wasn't, so Andrew, Charlie and I shot down together a few times. Much to my surprise, Charlie loved it. I think I've written here before that he is a thrill seeker. We spent the hottest part of the day on Saturday in the awesome Palm Springs Children's Museum and then went back for more swimming late in the afternoon. It was a much needed break for all of us and Sam's sweet little, "Can we do this again some time?" from the back seat on the way home made us realize we should be doing much more of it. The kids did great on way out there and we played a lot of "I'm Thinking of an Animal Vegetable or Mineral."
We got back in time for the Courageous Kid's Mother's Day at SeaWorld hosted by the American Cancer Society. The boys went straight for the rollercoaster as Andy is finally tall enough to ride it. Don't know if you can see the terror in his face in the picture below, but it was a little much for him- though both boys did it twice, once with me and once with Neil. Sam brought this picture to sharing yesterday at school. He loved it and wants to go back every day. As you can see from the picture, he never looks on the way down. Sunday night we were going to go out to dinner but when we got to the restaurant we realized both Andy and Charlie were asleep. Neil said he'd stay in the car with them while Sammy and I went in and had a Mother's Day date together. It was the best Fish and Chips and Cheese Pizza ever as Sam sat on my lap and we ordered the gooiest dessert on the menu. Happy Belated Mother's Day to my mom, Joan and Stephanie. Owie, we missed you on this Mother's Day.
Two funny quotes from Andy this weekend: As he served me my pizza that he made in the children's museum he said, "Here you go mom, now use your best table manners." Then when I folded up his map at SeaWorld and then gave it back to him when he asked for it he said, "Mom, you've simply ruined my map!"
Neil and Andy Mikulak are making great strides with The Magic Water Project. Children's Hospital, San Diego has agreed to open a Nifurtimox trial here in San Diego and wheels are turning for other groundbreaking projects. Thanks Andy, for all your hard work with Neil. The Coins for the Cure drive is going very well at Sam's school. As I wrote to Sam's principal yesterday, I'm just floored by the generosity of the kids and their families. Every day at drop off time, it seems one of the kids in his class in bringing in coins from their aunt or their grandma. Sam takes it very seriously and is collecting all of our change. Maureen came over for dinner a few days ago and he was scrounging coins from her. It was funny. Hope all the mothers out there had a Happy's Mother's Day. I sure did.
Margot
The kickoff for Coins for a Cure went really well on Tuesday. The whole Swami's team rode their bikes to the school and the kids thought it was so cool. Gary Emerson, Mrs Emerson's husband (he's to my left in the picture)told the kids that they are renaming their team TEAMSAM for the Race Across America and that Sam is going to be their team captain and if he says to go slow they'll go slow, if he says to go fast, they'll go fast. He was really awesome. Sam was talking about it all day. We were in the hospital yesterday for chemo and we flipped by a channel on TV with a bike race on, he made me go back and we watched bike racing all afternoon. The race on TV was in France and Sam said, "Is our team, you know, TEAMSAM, are they going to have to go to another world for the race?" So I told him that our guys are going from San Diego to Flagstaff through mountains and a desert.
They said last year the night temp in the mountains got down to about 30 degrees and the desert was about 115 degrees. These guys are crazy. An added benefit of doing the Coins for the Cure kick-off is that Sam really wants to go to school this week. Thank you Kate Sessions and Swami's. You made Sam very happy and the money being raised is desperately needed and we are so grateful. A few of the girls and I are considering following the team with kids in an RV (Darcy's idea). Though I'd stay off the road between here and Flagstaff if I were you, if we are actually driving an RV. It should make for some good web posts so stay tuned. The actual race is on June 10th and 11th.
Sam is feeling pretty good this week. He threw up breakfast yesterday but seemed to feel fine afterwards. He fell asleep towards the end of chemo yesterday and stayed asleep for a couple of hours only to wake up in time for soccer. He had plenty of energy for practice and had a huge smile on his face the whole time. Andy and Charlie are doing well. Andy had a Cinco de Mayo party at school today but fell asleep before we could go. He's going to be bummed when he wakes up because he really wanted to wear a sombrero. Charlie is standing up on his own for longer and longer and Elizabeth taught him how to do a high five yesterday.
Margot May 1, 2007 This article about the Londons and their fight to save Penelope is on the front page of today's Wall Street Journal: Saying No to Penelope - WSJ article about neuroblastoma PAGE ONE Father Seeks Experimental Cancer Drug,But a Biotech Firm Says Risk Is Too High By GEETA ANAND NEW YORK -- John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at NewYork University Medical Center here, sucking her thumb and clutching her favorite teddy bear..
For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn't blocking the way.
Neotropix Inc. of Malvern, Pa., says it would like to help, but the drug may not be safe for a child and dispensing it would be bad business. "For us to provide the drug to this child would be to put at significant risk a small company with limited financial resources," says P. Sherrill Neff, managing partner of Quaker BioVentures, a major investor in the firm, which is trying to tie up a vital round of financing of about $20 million. "You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient," he says.
The deadlock reflects an increasing tension between individual patients and companies using the revolution in understanding biology to develop new medicines. Ideas for treating deadly diseases are proliferating, and the Internet carries hints of promising results into the homes of dying patients. They are pushing for the chance to bypass the laborious approval process and receive quick access to experimental drugs when all else has failed.
In the U.S. Court of Appeals in Washington last month, a lawyer for a patient-advocacy group argued that patients' constitutional rights are violated when they are deprived of medicines in testing that could save their lives. The Abigail Alliance for Better Access to Developmental Drugs wants the FDA to allow patients to buy drugs in testing directly from companies and to allow the companies to profit from the sale. A three-judge appellate panel last year ruled in favor of the alliance. The FDA appealed the case to the full appellate court, which is scheduled to rule later this year.
Lawyers for the FDA argued that broad access to experimental drugs could harm patients and undermine the incentive for them to participate in clinical trials, the studies companies are required to perform in humans to prove safety and efficacy.
"This is a huge dilemma we face as a society -- it's moral and it's ethical," says Patty Delaney, director of the FDA's cancer liaison program. "We have the incredible pain of an individual -- sometimes it's a 4-year-old child, which pulls at everyone's morality -- versus the societal issue of what happens if a small biotech company diverts its resources to a child or ill mother?"
Mr. London, 40 years old, was raised in Manhattan and spent seven years at Highbridge Capital Management, one of the largest hedge funds in the world. He co-founded SuttonBrook Capital in 2002 with $30 million in capital and built it into a $2 billion hedge fund. On a blind date in 2001, he met his wife, Catherine, a free-lance writer and editor. They married the next year, and she gave birth to Penelope, their first child, on July 6, 2002.
Growth in the Ribs
Doctors told the Londons that Penelope had a particularly aggressive form of neuroblastoma and stood just a 25% chance of being cured. Over the next year, she underwent high-dose chemotherapy, radiation, a bone-marrow transplant and surgery.
A few weeks after the treatment ended, the family went on vacation to the Atlantis Paradise Resort, a hotel with a marine park in the Bahamas. They had just gotten off the plane when they noticed a lump on Penelope's neck. They tried to ignore it and enjoy the vacation, taking turns holding her in the underwater tanks for hours to indulge her fascination with the giant stingrays.
Soon after they returned to Manhattan, they discovered the cancer was back. Radiation shrank the tumors in Penelope's neck and skull, but the cancer broke through again after several months, in what would become a pattern. Each time Penelope's cancer progressed, the Londons tried a new treatment -- moving toward therapies earlier and earlier in human testing. Some treatments put her cancer into remission, others kept it in check for weeks, and some didn't work at all.
Mr. London combed the Internet and connected via Web sites with parents of other children with neuroblastoma. When he heard of promising research, he phoned the physicians or scientists involved, pressing them about whether their work could benefit Penelope.
Several times, the Londons say, their doctors told them they were out of options and advised them to take Penelope home to enjoy the time they had left. "More than John, I was willing not to try anything else because I just wanted Penelope to be comfortable," says Mrs. London. "But John just couldn't do that. And many times, he was right. Penelope would not be alive today if it weren't for him."
"Penelope was still laughing those deep belly laughs of hers, still running around and looking healthy," says Mr. London. "I just couldn't give up on her."
Not wanting to miss time with his daughter, Mr. London stopped going regularly to work at the Manhattan office of SuttonBrook. Running his hedge fund from Penelope's bedside at home, he often stayed up all night devouring medical research papers. One day, sifting through 600 papers that were presented at a conference, he read about an antibiotic used overseas that appeared to help a child with neuroblastoma. Pediatric-cancer specialist Giselle Sholler wrote that the child's cancer went into remission after being treated with the antibiotic plus chemotherapy. Dr. Sholler agreed to treat Penelope.
The combination therapy seemed to work, says Dr. Sholler, an assistant professor at the University of Vermont who had been studying the potential treatment in mice. The walnut-size lump over Penelope's collarbone shrank to less than the size of a pea, Dr. Sholler says. For three months, as Penelope's curly brown hair began to grow back, she played like any other child, dressing her dolls, making vanilla pudding with her older half-sister, Isabelle, and teasing the family cat, Charlotte.
"She had an incredible ability to bounce back," says Elizabeth Raetz, a pediatric oncologist at NYU Medical Center who has been treating Penelope and advising the family since she was diagnosed.
Through the struggle, Mr. London grew close to the parents of other children with neuroblastoma. "I felt so alone in going beyond what the medical establishment wanted me to do, that the parents of other sick kids were the only ones I could truly relate to," he says. He invested $100,000 in a fund that is paying for Dr. Sholler to test the antibiotic in combination with chemotherapy in a clinical trial. Dr. Sholler has enrolled eight patients in her trial and most have had their tumors shrink without many side effects, she says, although she cautions that the tests are still at a very early stage.
"John's passion for finding a cure for this disease and his daughter made this trial happen," she says. "And all of these children are seeing a better quality of life."
Cancer Breaks Through
The experimental medicine is a virus that strikes pigs and appears, in early test-tube and mouse experiments, to attack certain cancer cells in humans. The approach is new and risky, Neotropix Chief Executive Peter Lanciano notes, because it involves injecting a virus into humans that they presumably haven't been exposed to before. The drug is still in its earliest phase of trials for safety. It was tested in just six human beings over the past year. The company hopes to finish the first stage of testing over the next 18 months, giving the virus to another 49 patients, most with small-cell lung cancer.
Mr. Lanciano says that the week he took over as CEO nine months ago, the FDA put Neotropix's trial on hold because the first patient died. Only after four months of testing and analysis was Neotropix able to resume its trial, having demonstrated that the patient died from cancer and not the therapy.
That delay was on Mr. Lanciano's mind when Mr. London and his supporters began calling. The CEO says he wanted to help, but he thinks the drug is too early in testing to be used safely by a child. To give Penelope the dose that was effective in mice, he says he would have to multiply the top dose used in humans so far by 100,000 times. Normally drug companies are careful to raise the experimental dosage in small increments to detect side effects before they become lethal.
"The question is: Can we really help or would we do more harm?" asks Mr. Lanciano.
Mr. London argues this is a risk worth taking. "We're not talking of testing an unproven drug in a child who is perfectly healthy and running around," he says. "My daughter is already in so much pain and is so sick she can't get out of bed. If anything has a prayer of saving her, how can you argue it's not the right thing to do?"
Investors have put about $14 million into Neotropix, which was founded in 2003 by a former Novartis AG scientist. Last year, Mr. Lanciano, a former executive at several biotech companies, took the helm. Mr. Lanciano and Neotropix board members have expressed concern that the FDA will force Neotropix to put its trial on hold again if Penelope dies. FDA officials called Neotropix and reassured the company that this isn't the case, Mr. Lanciano says. A colleague of Mr. London who is an internist had approached the FDA and asked it to deliver that message.
Despite the verbal assurances, the CEO says he is still worried. "You never have the ability to wash your hands of any adverse events the patient has," says Mr. Lanciano.
FDA officials, agreeing only to speak generally about the issue, said the agency would not hold a company accountable for the death of a very sick patient receiving therapy as a desperate effort. "The FDA has good appreciation for the fact that we're dealing with people mortally ill and this is a last-ditch effort," says Richard Klein, director of the agency's HIV program. The notion that the FDA would halt trials over a death in such circumstances is "more of a myth, or urban legend," he says. Nonetheless, "there aren't any absolutes," says Ms. Delaney, the FDA's cancer liaison. "We can never say: 'We won't pay any attention to safety' " when a patient gets a drug.
The Neotropix board held several meetings on the question of giving the drug to Penelope, Mr. Lanciano says. At one point, the board called an ethicist for an opinion. Urged on by the London family, patient groups and politicians, including the staff of House Speaker Pelosi and Pennsylvania Gov. Edward Rendell, lobbied on behalf of giving the drug to the child.
On April 18, the Neotropix board decided not to provide the drug. Yet calls from politicians and Mr. London's supporters continued, Mr. Lanciano says. Finally, four days later, a Sunday, Mr. Lanciano sent out an email, copying them all.
"Tremendous pressure has been brought to bear on all levels of the company" to try to get it to change its position, he said in the email. "We will not do so."
Mr. Lanciano, 50, says he sympathized, having lost his wife several weeks earlier to cancer at age 51. He tried to get her in clinical trials for pancreatic-cancer treatments, but she didn't qualify, he says. "If I were that father and mother with a dying 4-year-old, I'd be doing exactly the same thing," says Mr. Neff, the partner at the venture-capital firm that has invested in Neotropix. "There is no right answer," he says. "But in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development."
Mr. London is now trying a new avenue. A day after Neotropix turned down Penelope, a friend Mr. London met on a parents' Web site told him about another company, Jennerex Biotherapeutics, also with a virus in the earliest phase of human testing for cancer. Mr. London reached the company's chief executive, David Kirn, on his cellphone and the two spoke for an hour. Dr. Kirn, a cancer specialist, agreed to provide his experimental drug to Penelope if a hospital would agree to administer it.
"If you are in the position where a loved one is dying of a disease, it is impossible to understand how any company can withhold something potentially beneficial," says Dr. Kirn. He says his company has raised $10 million so far, mainly from individual investors who leave medical decisions entirely up to him.
William Carroll, director of pediatric oncology at NYU Medical Center, said Saturday he's trying to get permission to treat Penelope with Jennerex's experimental virus at his hospital. He needs approval from several hospital committees that monitor clinical trials and biosafety because the treatment is a live virus. That process would normally take months.
Dr. Kirn is pitching in to make the case. "We're asking hospitals to compress a six-month procedure into a week and that's very difficult," Dr. Kirn says. "You're asking them to bless a plan with less than the full data that is normally available. But you're asking them to do it for a heroic cause -- to try to save a child."
Running Out of Time
Wearing pink pajamas in a ninth-floor room at NYU Medical Center last week, Penelope, frail and partly bald, tucked her favorite stuffed bear under her arm as she watched an Animal Planet television show about a sick walrus that was saved. She cried now and again, sending her parents rushing over. A bowl of half-eaten oatmeal sat on the table; Mrs. London asked a friend to make it with extra butter to try to fatten up her daughter. Mr. London's computer was open to the Web site he uses to keep family and supporters updated about Penelope.
The Londons brought Penelope to the medical center Wednesday because her pain medicine wasn't working. They thought she needed stronger drugs to stay comfortable. The plan was to switch her to methadone, a powerful narcotic, and take her home.
On Friday night, after Penelope had struggled for two days with the pain, her eyes lit up when her big sister, Isabelle, appeared in the doorway. The little girl, who hadn't gotten out of bed in days, pulled herself up -- batting away the outstretched arms of her parents -- and wobbled over to sit on the cot beside her sister. Later, when Dr. Raetz, the oncologist, stopped by, she found Penelope, her arm shaking a little, putting the numbers of a block puzzle into the right spaces, not randomly but meticulously, in ascending order. "She's a very determined little girl," Dr. Raetz said.
"We go into this with our eyes open," Mr. London said, talking in another room out of Penelope's earshot. "The chance of anything bringing her back from the abyss now is very low. But the only thing I know for sure is if we don't treat her, she will die."
Mr. London and his wife say they are searching Penelope's big brown eyes for clues as to how long she wants to continue to battle for life.
For now, says Mr. London: "We see she still wants to fight." Write to Geeta Anand at geeta.anand@wsj.com
Here's the link to the article which includes some great photos of Penelope: http://online.wsj.com/article/SB117798196751887629.html ***********************
April 30, 2007 The official word from Children's San Diego on the MIBG is that Sam's disease is stable - though the doctors say that the uptake is not visible on the computer screen at all.
Sam is at school today. He missed three days last week but was cheerful this morning on his way. He was a little tired on Saturday but rallied yesterday for going tide-pooling in the morning and soccer in the afternoon (don't ask what the score was- it was ugly). Last night I was reading the boys a book - Scooby Doo and the Marsh Montser- and there was a Mr. Samuels in it. Sam said, "Hey Mom, Samuels! Get it? From now on when you read his name can you say Mr. Sam?" It was funny. I read the rest of the book reading "Mr. Sam" and Sam was satisfied. People who don't know him at the hospital address him as "Samuel" and he hates it so he must have assumed Mr. Samuels would have hated it too. He's been making Charlie laugh a lot these days. He can really get him going and he loves it. I'm sorry to say that he and Andy can also get Charlie crying too, they treat him like their favorite toy which is mostly good but sometimes requires intervention. I have to run out of the kitchen when I hear, "Hey Andrew, watch this." and then I hear Charlie cry. They aren't really hurting him, just pestering him. He is a cutie. So sweet. He's cruising around the furniture these days and lets go every once in a while and balances for a few seconds before falling on his behind. He's a lighting fast crawler and though we've put a gate at the top of the stairs, we've yet to get one for the bottom of the stairs. He can get to the top in record time and it's his favorite game to see how many stairs he can climb before someone comes and collects him. Andy is doing well, we're starting to work with him on writing his letters and numbers. I bought a couple of preschool workbooks and it's been great for Sam. When Sam does his homework Andrew does his worksheets. Sam is much more chipper about doing his homework now that someone else is suffering with him. I watched Andrew from afar after soccer yesterday. He was shaking the other team's hands telling them "good game" as we've taught him to do and whenever anyone shook his hand he shook his whole arm and head making them laugh. After a couple of handshakes the whole other team was lining up to shake hands with Andrew. It was a quintissential Andrew moment.
Tomorrow is the kickoff at Sam's school for Coins for a Cure and the Swami's bike team is coming to school on their bikes and will introduce Sam as their honorary team captain. Have I mentioned that we love these guys? They are just awesome. I talked to Sam about whether or not he wanted to go up and stand with the bike team. He wasn't sure. First he said yes. Then he asked if anyone else was going to go up and stand with the team. When I told him no, it would be him because he gets to be the honorary team captian, then he said "no," thought about it awhile and said "maybe" so we left it as a game time decision. I'll post tomorrow after the assembly and let you know how it goes. He's really excited they are calling it TeamSam and is starting to understand a little bit about what it's all about. I know that sounds funny since he is the cancer patient but we've always tried to keep the gravity of the situation as our burden to bear and not his. He's so funny. The other day I made him his favorite peanut butter and chocolate milkshake and he gave some to Charlie before I could stop him and I said, "Charlie's not supposed to have peanut butter until he's one in case he's allergic but I guess he's not allergic." Sam said very happily, "Hey, none of us are allergic to peanut butter. Isn't that great, Mom?" It made me laugh. I was thinking, yeah forget about the fact the you have cancer and rejoice in the fact that you and your brothers are not allergic to peanuts. There's a lesson in there for me and I'd best take it before I become some bitter woman who sucks the life out of everyone she meets.
We start chemo again today after school and will probably do three days of IV topo and two weeks of oral cytox. It's kind of funny to write chemo in nicknames, it's like I'm talking about old friends. I have a love/hate relationship with these friends. They are keeping my son alive but I would like to hang out with a better, less toxic crowd. We are not going to do a bone marrow biopsy here because when we go to Houston for the vaccine trial, we will need to do one there along with a CT another MRI, MIBG and probably a bone scan so no need to put Sam through it twice. In San Diego the parents stay outside of the procedure room during the bone marrow biopsy but at The City of Hope, Dr. Bolotin would do it while I was in the room. In all of Sam's treatment and all of the things I've seen him go through, watching the bone marrow biopsy was the only thing that flat out made me faint. Sam is put sleep, turned on his stomach and the doctor forces this gigantic needle into his hip bones in order to get a sample of the marrow. It's really not a fun thing to watch- can't imgaine it's much fun to undergo even if you are asleep. Now that I've perked up your day with that lovely visual, I'm going to perk it up even more by posting a link to this year's Pulitzer Prize winning photos. They are of a young boy in Sacramento during his battle with Neuroblastoma and they say a thousand words on how horrible this disease really is and why every parent has such a sense of urgency even when things are going well. I must warn you that these are tough to look at and I completely understand if you don't want to do it to yourself. They rendered me utterly useless the day that I looked at them and I can't bring myself to go back and look at them even when posting the link: http://www.pulitzer.org/year/2007/feature-photography/works/index.html
Margot April 26, 2007 The roller coaster of scan week has not dissapointed. Since I know everyone is waiting for this part, I'll start with the fact that the MIBG looked good to us this morning. We think we are either stable or better either of which we'll take. The official report is not back yet though so we may be totally wrong. Earlier this week the MRI showed that in comparison to the last MRI we had way back in August, the two lesions had grown and there were several new spots. This threw Neil and I into a panic until we talked Dr. Sholler and she told us that you can have abnormal MRIs for up to two years after there is bone damage. So we did the last MRI before we went on Fenretinide and the lesions showing up now could be from when we progressed back then. A clear or almost clear MIBG is a good sign. On the other hand the MRI is also a leading indicator. We saw our first relapse spot on the MRI months before it showed up on the MIBG. So, where does that leave us? Well we're probably going to do a bone marrow biopsy to see where we are with that. If we do that it will allow to send cells to a couple of different labs. We are cautiously happy since blood work is normal. I'll write a more in-depth report after we get the official MIBG report.
Margot April 16, 2007
My grandmother played the lottery every week. "Margy," she'd say, "I have all the money I'm going to win parceled out to every family member, I have all the trips I'm going to take planned out and I'm ready to go shopping if my numbers come up." I continue the tradition and have actually had the thought that maybe since Grandma played her whole life and only won eleven dollars, the laws of the universe will work in my favor and the luck that would have eventually come her way might come mine. Muddled logic I know. My Dad, who is a math genius, used to tell me that the lottery was a tax on the stupid. "Do you know what the actual odds are of winning the lottery, Margot? He used to ask me. "Well Dad," I'd say defiantly, "somebody wins." I go into the same 7/11 after dropping Andy off from preschool and the same guy sells me my ticket. I go in and ask with my deadpan gangster face as if I'm passing information on bank heist and ask, "Anybody hit on Wednesday?" We say "hit" in 7/11 not "win." He always knows. "Guy up in Rancho Bernardo hit. Only five numbers though - didn't have the mega. $250,000." I nod once and say "Two quick picks." He somberly hands me my ticket and wishes me luck. Sometimes if it's a big jackpot I'll buy three quick picks then he raises his eyebrows and says, "Feeling lucky this week, huh?" Oh, I would go shopping if I won. I would shop for The Seneca Valley Virus Trial and The Bromopyruvate Trial and The Dichloracetate Trial and any other trial that might save Sam and Penelope and Max and Emily and all the kids fighting neuroblastoma . Cost of each trial: $1 million to $1.5 million. Being able to see Sam graduate from high school? Priceless. Ah, there's the lottery I really want to win.
So, let's talk about the odds. What are the odds of my son getting a rare cancer? Hmm. Pretty high. What are the odds of one the drugs currently in development being a cure? Actually there are several drugs/treatments that are looking very promising. Do the odds go up if we are depending on me wining the lottery to fund the clinical trials necessary to get these drugs into kids? Yes, they do. Money Money Money, it's a rich cancer's game. Survival rates for Leukemia and Breast Cancer and Prostate cancer have gone up dramatically since money for research has poured in. Unfortunately, Neuroblastoma is a very poor cancer. We are going to change that.
Neil is working on budgets for clinical trials today so it got me thinking about money. Sam is in school today and doing fine. His leg hurt yesterday during soccer but his numbers are very pretty. LDH Friday was 579 and HVA and VMA were 8.3 and 3.6 respectively -both normal. MRI is Friday. MIBG is next Thursday.
Margot April 12, 2007 No messy powders or terrible tasting pills! No exercise required! No difficult menu planning! It's THE SCAN WEEK DIET.
You don't need any expensive exercise machines or books for this diet. All that is required is that you have a child with cancer who needs to be scanned every three months or so. Your appetite will vanish! Your heart rate will stay elevated above 140 for at least the two hours during the scan and probably hours before and after - without doing any exercise. Sometimes you are so preoccupied that you forget to eat. If you see something new light up on the screen, you might even throw up. Forget the South Beach and Atkins diet. Throw out that You On a Diet book. There is no diet available today as effective as: THE SCAN WEEK DIET Side effects may include: You forget to feed your children You tend to run red lights (not recommended that you drive or operate heavy machinery on this diet) This diet brought to you by Neuroblastoma ******************************************************
April 11, 2007 Quick update to yesterday's post. Numbers were all pretty good: ANC 1300 Red Blood: 10 Platelets 96 They didn't do a chem panel so I don't have an LDH. We did do an HVA/VMA and we should have that back within a few days. During Sam's doctor check for the MRI he told the nurse practitioner the reason his knee is hurting is that he remembers being run over by a "big guy" when playing the blue team in soccer several weeks ago but that it's getting bettter. This is the first Neil or I had heard that explanation. I tried not to jump for joy right there in the exam room. We're hoping that's all it is but are still nervous. The reason Sam had to have a doctor's check is that we've decided to put him to sleep for this MRI. It's the first time he's been sedated for an exam in two years, he's such a trooper but this is a two hour MRI and the last one we did was tough on him. The tech ladies put these really heavy things over his legs and after about an hour and a half he started to move around because his heels hurt and they got fairly nasty about it. You can imagine our reaction to that. Anyway, he'll be asleep this time so it won't be so rough on him. April 10, 2007 The boys had a wonderful Easter. The Easter Bunny left them an egg treasure hunt to their baskets. Sam loves the treasure hunt every Easter and as he was going to bed the night before, he was trying to guess where the Easter bunny might leave each map and where he would ultimately find his basket. Both boys were very excited when they found the first egg with the map in it. We went to the Mikulaks for brunch afterwards and it was very nice. The kids were thrilled that some of the eggs at that Easter egg hunt had dollars in them. Andy was walking around saying "I'm rich. I'm rich." Grandma Sara has been in town for the last four days or so and has come with us to all of the various spring break activities. We met the Harringtons at Legoland on Friday after chemo and the kids had a great time with Grayson and Miranda. Sam and Grayson rode all of the roller coasters together. They are now tall enough to ride in their own car. They both had the hugest grins on their faces. Andy rode his first scary roller coaster with me. He had a big grin on his face until we hit the first big scary hill and then his expression changed to sheer terror and I spent the rest of the ride reassuring him that the scariest part was over. He wanted to "do it again" when we finished. Grandma Sara sat with Charlie while we went on the rides.
We managed even with chemo last week to get to the Wild Animal Park and watch the cheetahs get fed, go minature golfing, to Legoland, up to Cathy's for an early Easter egg hunt and to Johnny's birthday party so all in all I think Sam and Andy had a good Spring break. We are going in for a blood check today and will do a history and physical for Sam's MRI scheduled for the 20th. He will have an MIBG on the 26th. He's been complaining of knee pain in his left knee pretty consistently lately and we are very nervous about the scans. The new "easy" chemo may be too good to be true. I so hope not. The good news out of Texas Childrens is that his vaccine is growing. It'll take another three weeks or so for the second part to grow but things are looking good so far. Sam is back in school this week though I'm picking him up at 11:30 today for the blood check. He got some great spring school pics I'll post this week.
Margot April 3, 2007 Number update: Yesterday's LDH: 567 (better) Last Week's VMA 8.1 (very normal) HVA 10.6 (just above normal but we'll take it) Weight 20.8 kilos (woohoo! That's almost 46 pounds -more than Sam has ever weighed in his life) We are on day two of chemo and since it's Spring break for Sam and Andy we're going in early in the morning to do the infusion so we can do fun things in the afternoon. It's only a half hour infusion but with yesterday's blood check, doctor check and general waiting around we didn't finish until 1pm. I thought today would be in and out since we were already accessed but there weren't any beds when we got there and then they couldn't find a syringe pump and so it was three hours. Jess promised tomorrow would go faster. All that grumbling aside, Sam is feeling good and is very chipper.We all went on a bike ride last night with Sam Andy and Dad on bikes and me on roller blades pushing Charlie in the jogging stroller. The boys had a ball and now that it's lighter later hopefully we can do more of that when Neil gets home from work. He took Sam and Andy to Meet the Robinsons last night with Mimi so the boys had a full day. It almost made me think this week we are living the rosy picture Time Magazine painted in this week's edition about living with cancer. They failed to mention of course any of the tougher pediatric cancers.
The boys are downstairs now with Samantha and Taylor and Deb called and wants to meet us at the Wild Animal park this afternoon. Sam wants to see the new cheetah exhibit. They have a special safari thing there where you can watch the cheetahs run I was thinking of surprising him with it for his birthday this year. He worships cheetahs because they are the fastest animial on earth. Soccer update: SAM SCORED A GOAL THIS WEEKEND!! Neil ran out on the field after he scored and gave him a huge hug. I missed it because Andy's game was at the same time this week and I was accross the field. I was bummed but Neil took him out of the game so he could come over and tell me about it. What a smile! I got very teary.
Charlie is climbing up the stairs these days and crawls right for the toilet paper so he can unroll it if anyone opens the bathroom door. Aren't we a little early on that, Charlie? Andy's doing fine. He's been doing "work" on my fax machine lately. He picks up the handset and says, "Hello? Oh Hi Colleen. Mmmm Hmmm. Mmmm Hmmm. Oh we'd love to. That would be wonderful. Ok Friday. Mnnn Hmmm. Ok. Goodbye Colleen." It's a spot on imitation of me on the phone. It's very funny.
In the background to all of this Penolpe is dying and breaking our hearts. It is hard to reconcile in my mind and heart Sam doing so well and enjoying that fact when several other children and their parents are living through horror. I can only say that we are thinking of them constantly and feeling generally helpless. I am in awe of beautiful selfless Penelope.
We'll do scans this month and hopefully hear from Texas Children's on whether or not Sam's vaccine has grown.
Margot March 27, 2007 Sorry for the lack of update. Sam is doing well. He got a blood transfusion yesterday after coming home early from school yesterday. Thank you blood donors! He perked up quite a bit after the transfusion and is in school today. He has a school play tonight and we are all going to see him. Grandpa and Stephanie are in town so they will come too. I can't wait. I think Sam's part of the chorus. His platelets were 54 yesterday so we'll do another blood check on Thursday to see if he'll need platelets. They may not be recovered enough to start chemo again next week. It's his spring break so I know that will suit him just fine. His buddies are going places and he said he wants to go to Disneyland so we'll see. His LDH ticked up a bit yesterday to 604. It's still well within the normal range but Neil and I like to see it in the 500s as when we relapsed it was in the high 600s and low 700s. I know parents who've had kids with six or seven times the normal range are probably laughing at us but all the same, I'm waiting for Amy at the hospital to call me with last week's VMA/HVA numbers. As of yesterday they were still pending.
The kids are having a good time with Grandpa and Stephanie. They are house sitting for Carol and Doug who live just a couple of minutes away and have two little dogs. Sam and Andy have been having a great time taking them for walks and to the dog park. Sam and Andy got new bunkbeds on Friday and are so excited to show everyone who comes over. We bowling with the Monaco boys and Mac and Grant on Saturday. The kids all had a ball. Big news in soccer this weekend, after getting shut out in their first two games The Green Hornets (Sam and Neil's) team scored two goals and tied the game. Oh the joy in Mudville!. All the parents kept saying "Thank goodness!" Sammy did well and seems to be getting some strength back. He jumped up and down when they scored the goals he was so happy. Little Joe was a star goalie. Andy's team did well too though Andy really wasn't cognizant of that fact. He pretty much just ran up and down the field with a smile on his face taking cheeto breaks every now and then and sometimes tripping over the ball if it so happened to be under his feet. The coach told me it's really a wonderful thing to watch when "the penny drops" and the kids catch on. He says it will drop soon for Andrew. We're waiting. Charlie is pulling himself up and wants to stand all the time. He's going to be walking within a month - completely foiling my plan of him not walking until he's at least two.
We are gearing up fundraising and marketing ideas for The 24 Hour Corporate Challenge. The TeamSam jerseys are finished and Eric says they look awesome. The Emerson's have been amazing in organizing things. Lori is working on a Coins for a Cure drive at Sam's school that will be tied in with the bike race and the Mikulaks have the beginnings of a fantastic website for the race. I've been somewhat out of the loop on things and need to get my tail in gear. I was hoping maybe I can get a local business to match what the school raises.
On a very sad note and one that is never off of our minds, Penelope London and her family need prayers and good thoughts. There are not enough words to describe how hard this brave, beautiful little girl and her parents have fought this damn disease. They have opened the door to new treatments for all NB kids. Penelope's courage, spirit and sense of fun is the stuff of legends. Her parents are an inspiration and John is a very dear friend to Neil. Please say some prayers for her today and go hug your kids. http://www3.caringbridge.org/ny/penelope
Margot March 15, 2007 We are on day three of chemo today. We didn't start until Tuesday so that we could do two big blood draws on Monday and Tuesday for the naturopath so he can measure all kinds of things in Sam's blood. The blood draws were very very involved and the nurses at Children's San Diego were awesome. They worked their tails off on Monday helping Neil get everything in order and looking up what needed to be drawn, etc. We can't thank them enough. Neva especially, you are a star!
Sammy is still feeling pretty good. We are doing 30 minute Topo infusions and a Cytoxan pill at night. We cut the pill in half this round because his platelets, stomach and body in general got so beat up the last round. I don't know if it's the megase, the artemisinan, the lower does chemo, or the combination of everything he's taking but he looks and feels great. He's feeling so good this round that he went to soccer practice yesterday after chemo. Lance Armstrong, eat your heart out! I told him he didn't have to go and that if he did decide to go, he could just watch on the sidelines whenever he needed to. He ran around with the other kids the whole time. He never ceases to amaze me. People may think we're crazy to let him go to soccer practice right after chemo. He was even accessed. But the joy on his face on the soccer field is a thing to behold, even though he's not the fastest or the strongest. I remember when we were first starting chemo and I was reading other kids web sites and I'd read things like they sent their son or daughter to school with a low white count and I thought, "Wow, these people are crazy!" Now, thinking back to that, I only wish I'd done more of that. The funny thing was that Sammy bounced back into the hospital whether he was out and about or home sitting on the couch reading books and playing video games and seeing no one. It's just what his little body did. So, at this point, I'm going to let him do whatever he's up for. Neil is a great soccer coach. The kids just love him. He's got so much energy and he tackles coaching with the same intensity he tackles everything. I have to remind him sometimes that the kids need a water break every now and then. Their team got crushed in the first game of the season on Sunday. It was really ugly - something like 13 to zero. We knew we were in trouble the minute we walked on the field because these were big kids who looked like they'd been playing together for years. The kids had fun anyway though.
Andy's team won I think but they don't keep score. Andy has a great time running around on the field with a big smile on his face but during every practice and game the coach is always yelling, "Andrew! Where's the ball?" He could really care less where the ball is. He is a good little dribbler though and even got a score yesterday at practice. Their practices are very funny. Bella, one of the girls on the team comes to practice in a tutu and soccer cleats (I'm serious) and she practices ballet the whole time. The coach is a very patient man. Andy is really loving school these days and wants to go - which is great. I signed him up for the five week summer school at his preschool and think I might try a little beginning theatre class for him this summer.
Sam got an award yesterday at school and Neil and I went to the awards ceremony. He received a personal achievement award for great progress in reading and math. He was so proud and so cute on the stage with his award. He's been recommended for summer school this year to help him catch up. I'm debating whether to do that or try a tutor. Summer school is free so we may give it a shot and see how it goes.
Charlie is crawling and pulling himself up to a standing position now. He's still all smiles and loves to blab and blab and blab and blab. I was thinking last night as I was trying to put him to sleep that he's so excited about all the new things he can do, he doesn't want to go to sleep at night. He just keeps trying to stand up and blab to me. Ma ma ma, oouuww, mmmmm, etc. etc.
Neil is in Vermont today for the conference there. The conference is tomorrow and Neil is speaking. He'll talk about the parent team they've put together, how they came together, what their plans and goals are, and how to get there. The Mikulaks are there as is Meryl Whitmer, maybe John London and many many other parents and doctors. Dr. Sholler has got some phenomenal research going on and we are very excited. I really think this conference and the parents' and Dr. Sholler's work in general is going to make a huge impact on Neuroblastoma treatment. I'm biased of course. ;-). More pics soon.
Margot March 9, 2007 Wohoo! HVA: 8.9 VMA 5.1 LDH 550 Pop open the champagne and have a good weekend. We sure will. Those are all NORMAL numbers. I'm running around today but will do an indepth report soon. First soccer games are on Sunday
Margot March 6, 2007 We were due to start chemo again yesterday but Sam's platelets are only at 44 so we can't start until next week. This is a good thing in that it gives him another week of feeling good, eating, and going to school. It's a little nerve-wracking though because he's been complaining of leg pain lately. We can't tell if it's from running around so much, falling out of a tree (yes he fell out of a tree), or if it's cancer. We sort of have to assume it's cancer but it's hard to tell. Sometimes he says it's both legs in the same spot, which would not be cancer and sometimes he says it's his right leg -also odd because he relapsed in his left leg. Also, he is otherwise feeling and looking so good and, it's very intermittent. Anyway, that's our worry for the week. Neil and I had a phone consult with another nutritionist yesterday. This guys focuses on cancer and was very impressive. Neil found him of course. Sometimes we consult with nutritionists and the like and they say things like, "Now what kind of cancer is neuroblastoma? Brain Cancer?" The doctor yesterday knew his stuff -knew the mechanisms of neuroblastoma and how it works. He wants to test Sam's blood to see if we can't find some things to complement the treatments we're doing and make sure the supplements we're giving him now are helping. I was impressed with him. We'll see what he comes up with.
Charlie has decided he does not want to be put down so when you go to sit him down on the floor he straightens out his little body so that's it's impossible to sit him on the floor. It's really funny. He keeps wanting to eat what Sam and Andy are eating and not his baby food. I can tell he's going to have a mind of his own like his brothers. Andy had pajama day at preschool yesterday and came home talking all about the obstacle course he ran through. Neil went to a dinner last night to talk with Eric about fundraising for The 24 hour Corporate Challenge Race. I took the kids on a flashlight walk by the bay. We got out there and Sam said, "Wow, what a beautiful night." It's such a nice thing to hear from your six year old. Sam's been noticing the sunsets and the moon rising a lot lately -it reminds me to stop and take the time to notice and enjoy it. He and Andy looked for clues along the way. Andy loves to play Scooby and, "Ok gang, it's time to split up and look for clues." Andy was wearing his new Home Depot hat with the light on the top and was getting a lot of comments from people walking by. It was a beautiful night and Charlie happily took it all in in the Baby bjorn. He's almost getting too heavy for it. By the end of the walk, Sam wanted me to carry him so I had him on my shoulders and Charlie in front and Andy leading the way with his headlight. It was quite a sight.
We do another blood check on Thursday. They don't expect Sam's platelets to be up enough for chemo by then but we can gauge where we are. It's working out for the vaccine trial because we were able to do the blood draw for that yesterday and we're supposed to wait another seven days and then do another one. Since we couldn't have been on chemo for that, we would have had to wait 21 days for the second blood draw and I don't think that would have worked. So, please think good thoughts for Sam's blood growing a vaccine at Texas Children's.
Margot
February 26, 2007 Three little words that put a spring into our step and a smile on our face: SAM IS EATING!! We started Megace on Saturday morning. After we'd gotten the boys new soccer cleats and been up to the park to practice soccer moves, I brought Sam and Andrew with me to the grocery store. All of a sudden, Sam said, "Mom, can I open these bagels now?" Of course, I tore the bag open immediately and handed him a cinnamon and raisin bagel. Then he said, "Can we get a sample of cheese at the deli and a cookie at the bakery? He pretty much has not stopped eating since. He woke up this morning and asked for a grilled cheese and tomato soup for breakfast. He is at school today which is big. He really didn't want to go much at all last week. I took him on his field trip and he just sat on my lap most of the time and didn't interact with the other kids a whole lot. It broke my heart a little but I think he was just feeling crappy and he wasn't eating anything at all. I could see that he just didn't have much in the tank when he went to play in the park. He came back after a mintue and sat with me. He wanted me to stay with him at school so I volunteered in his class in the mornings on Thursday and Friday (again I do not know how Mrs. Gage keeps a straight face- I really had to stop myself from laughing out loud several times) but Friday when I left he came with me. He just didn't want to stay. Today he seemed happy to go and he has so much more energy. Also, I'm not sure if it's because he has more energy or feels better or it's a side effect from the Megace but he's been a in a really happy mood.
We stopped the oral chemo at night which also probably contributes to the better mood and higher energy level. We are going to do a blood draw for a vaccine trial at Texas Children's so they can grow a vaccine for Sam. He needs not to have his T-Cells depleted for the blood draw (I think that's right) and therefore needs a little break from chemo. We'll start the oral Cytox again when we are due for the IV Topetecan (next week). Yuck. I can imagine how Sam feels when he finally feels good. He's been feeling crappy and his stomach's been hurting every time he eats for so long that it must be like winning the lottery to feel good. I know that Neil and I have been so sick with worry over his not eating and low energy that when we saw him running around the soccer field this weekend with a smile on his face and filled request after request for more food, we couldn't stop smiling ourselves. Dr. Willert had said she only wanted to give Megace a week to work because Sam is so thin. She said that if Megace didn't work, we would try marinol (a version of TCH). I had the fleeting thought that maybe I would give some to Neil too ;-) I'm kidding. I'm kidding. That's just a little joke.
The boys are very excited about soccer. Neil is coaching Sam's team and Sam can't stop talking about it. When is the first practice? When is the first game? What will our team name be? Neil got the team uniforms and Sammy wore his jersey all weekend. It doesn't even have his name on it. Andy is starting soccer this spring too. His team is called The Black Vampires. I don't they could have picked a better name. Andrew loves to creep himself out by talking about vampires and blood. Andrew had a play date on Friday with his buddy Beau and he had a blast. I came to pick him up and he was dressed in Beau's Batman costume complete with muscles and was flying down the zip line they have in the backyard. Andrew paradise. Beua has an older sister and she had some friends over as well. Pam (Beau's mom) told me that the girls were all sitting at the table and Beau came over and said, "Andrew says he does not like girls. They are just too pretty." I was trying to watch a little bit of the academy awards last night (near to impossible with three children in the room). Andrew saw the women in dresses and he said, "Is that you when you got married, Mom?" He equates fancy dresses with getting married. Then he went and knocked on Mimi's door for the tenth time time (the poor Adams) to see if she wanted to come over. She said not tonight, she was watching the Oscars and he said, "Oh, well my mom's watching a show called, Um......Married!" He had his four year check up last weed and is very healthy. I used to take that for granted but not any more. Andy got three shots and the tetantus shot made his arm from his shoulder to his elbow swell up and turn all purpley red. He and Sam had a great conversation about pokeys and how bad they are.
Charlie - again I'll have to start our next update with Charlie so he is not always at the bottom. He is so cute and happy and smiley. He is crawling with his arms only (doing the Army crawl). I got all of the 12-18 month baby clothes out of the garage this weekend. He 's only six months and he fit's into them. At his six month appointment Dr. James said he's not even on the height chart. He's grabbing at everything and becoming a very good hair puller. I took him to the hospital with Sam and I on Friday while Andrew was at his play date. Sammy got platelets and was asleep most of the time from the Benadryll pre-med. Charlie charmed all of the nurses. He's such a people person. They took turns walking him around when they weren't too busy. Sheila was our nurse and Sammy loves her. Lauren came over and pretended to fight for him and Sam got the biggest smile on his face. They always joke with him that they fight over who gets to be his nurse. Whenever he see Sheila he says, "Where's Lauren?" and when he sees Lauren he says, "Where's Sheila?" He likes to see them fight for him. It's funny. A couple of weeks ago we had a nurse we didn't know so well and Lauren was doing procedures in the procedure room. Sam said, "Mom, why did Lauren lose the sword fight today?"
Neil is off to Vermont for a one day conference in March. He's very excited about the agenda. He continues to work non-stop on getting new things into the lab.
I promise to update more frequently this month. Thanks to Megace and a happier Sam, I'm coming out of my February funk.
Margot February 16, 2007 Everyone is feeling better this week. Sam was well enought to start chemo on Monday. I forgot we had the day off from school so we went in early, got the doctor check and got started with IV Topetecan early that day. It's nice because it's only a hour to an hour and a half after school vs. a long eight hour day. Sammy takes a 50 mg Cytoxen pill every night and we will continue that for 21 days but today is the last day of IV Topetecan. This combo is supposed to be less toxic but it's still taking a toll on Sam. His stomach is upset we are struggling to get him to eat. He 's home from school today as he was pretty wiped out but made it to most of this week. It was tough on him because Little Joe was on vacation and he missed him. Also, I don't think he was feeling that great. We're going in this afternoon to get pamidronate (sp)?(a biophosphinate similar to zometa) that will theorectically stregnthen Sam's bones so that no new tumors will grow. We'll also get our last IV Topetecan. So it'll be all afternoon.
Sam has a field trip on Tuesday to go to the science museuem and see the grossology exibit. He's excited about that. We're thinking of taking the kids to Palm Springs this weekend for a change of scenery and some warm weather and swimming but spur of the moment may not work for Presiden't Day weekend - everything may be booked. Dr. Roberts gave me a prescription for another anti-nausea med that will make Sam sleepy so we figure we can knock him out for the car ride so he doesn't get car sick. I have some pictures to upload from Andrew's birthday party and some of Sam and Andrew at the beach that Neil took when I was in Austin. Sam is so painfully thin in the beach pictures that it hurts me to look at them. We are discussing Megase (which is an appetite stimulant (hormone) with the doctors. They've thrown up the option of the NG tube in his nose which we will not do to him. I am desperately trying to get him to eat. If you see him, offer him food.
Andrew is at a playdate today with Matthew Dykstra and I'm going to pick him up at tumbling class. He went to the tide pools with his preschool class yesterday and has been talking a lot about the mama crab with her babies. I'm so thankful for Andrew's preschool. He just loves Miss Gini and Miss Jen.
Charlie is so cute. He's sitting up now and just about to crawl. I just went to look at some baby pictures we had done of him so we could order some. I know I'm biased but they are so darn cute. I had a hard time deciding. The photographer when he took them said he's never had a baby shoot go more smoothly or gotten more good shots of a baby in such a short time. As I told my cousin Taylor in New Orleans, I keep bragging about what a good baby he is and it's probably going to come back and haunt me when he's 16. Taylor said something really comforting like, "There's pretty much no help for any of us when we're sixteen." Sammy's been great in the hospital. I had all three boys there on Valentine's Day afternoon after we did a treasure hunt and craft at the park that Sandra and Monica organized. Anyway, it was a bit of zoo in the hospital but our nurses helped us out as usual and Loren even took all three boys for a walk at one point. Sam was quite the cassanova and gave all the nurses a valentine. It was really cute. He and I have been doing a lot of goofing around in hospital this week.
Pictures soon. Please think heavy thoughts for Sam.
Margot February 9, 2007 All three kids are sick and coughing up a storm. Dr. James thinks Charlie has RSV which is going around. He was wheezing a bit and coughing, though the past couple of days he seems to be getting better. He's still in a great mood and since he's healthy otherwise and big for his age, Dr. James thinks we can just let it run its course without steroids or any other treatment. I think he's on the back side of it now anyway and has been sleeping much better. Sam had a low grade fever on Wednesday night and fell asleep at 6:30pm and slept all night. I'm not a fan of low grade fevers and a lot of sleeping because it reminds me of right before Sammy was diagnosed and I panic. So, you can imagine my relief (ha ha) when he spiked up to 103 yesterday morning. I took him in to the hospital. We were due to start chemo today but will not since Sam is sick. Since we had such strong anti-biotics last week for pneumonia Sam is pretty well covered for anything bacterial. His white counts are at 16,000 (enormously high) and showing that he's fighting it off. His chest sounds junky but it is all throughout his lungs and not in one particular spot (which would indicate he might still have some pneumonia). Dr. Roberts is pretty sure what he has is viral (seeing as Charlie has RSV a reasonable assumption) and he said we could go home and didn't have to be admitted. Hurray! Andrew woke up yesterday with a fever and feeling miserable. He and Sammy mostly just laid around yesterday. They are all three still coughing but I knew we were going to be in better shape this morning when Andrew woke me up at ten to six by poking me in the face saying "I'm hungry, will you make me some apples and peanut butter?" and Sammy woke up and wanted to put on his Ninja turtle outfit. Sam is missing his field trip today to a dance studio. I was supposed to drive for it. It would have been so cute but he's happy to be downstairs playing with Andrew and had a great week at school before he got sick. The plan for chemo to take an intermediate path before switching totally to oral chemo. We will keep the IV Topetecan which is only an hour infusion and take the Cytox orally. He can do the infusion every day after school and the plan is to start on Monday with that for five days and see how he tolerates it. I'll pick him up early Monday from school so we can do a doctor's check before starting and Dr. Roberts can give us the ok.
I got back Monday from Austin and a very emotional long weekend. My grandmother Owie's funeral was last Friday and Aunt Molly's was on Sunday. They were both wonderful tributes to two amazing women who shaped me in so many ways and I am missing them. I was lucky to have them. It was good to see both sides of my family and I marveled on the way home at how much I love them all. Neil and Sam and Andy did well together here and Neil got Sam to school on time on Monday. I was so impressed! Mrs. Gage made me laugh when she told me Neil was slightly frazzled at drop off and she asked him, "Does he have socks and underwear on?"
More on Monday when I can tell you all how Sam is tolerating his new "easy" chemo.
Margot February 1, 2007 Sammy is home. We got home yesterday morning. He did have pneumonia in the right lung but tested negative for all the really nasty types of pneumonia and is responding to the antibiotics well. He's downstairs playing with Andrew right now. We're keeping him home from school for the week and then he should be back in action next week. My aunt and grandmother both died yesterday and there is a big hole in Neil's and my heart today. I'm scrambling to get ready to go to New Orleans and Austin. Neil will stay with Sam and Andy and I'll take Charlie. Thanks to everyone for all the kind emails and phone calls and for all the help this week. The plan is start Sammy on oral chemo next week.
Margot January 29, 2007
Sam was admitted to the hospital this morning with a fever of 103 and feeling generally miserable. We did a chest x-ray to rule out pneumonia - haven't gotten it back yet. He needed blood and platelets today and his ANC is 230 -we're hoping on the way up, not down. Argh. I wish he weren't feeeling so miserable. I feel so bad that he's in there. He immediately wanted to know how many nights he'd have to stay in. We'll have an ice-cream cake for Andy in the hospital tonight. I know the nurses will help us sing Happy Birthday to him and Maureen is going to come up. His birthday party on Saturday was a roaring success and he's at preschool today with some dinaosaur masks to give to his friends.
When it rains it pours. I am having an I hate cancer day today and a tough week in general (aside from Andy's birthday). I just hate having Sam so beat up by chemo. I was scheduled to fly to Austin tomorrow to say goodbye to my Aunt who we are losing to inflammatory breast cancer. I have cancelled my flight but am so very sad about my Aunt Molly.My grandmother Owie is also in the hospital in very serious condition and I'm thinking of her contstantly as well. She and my family in New Orleans are having a tough time of it. But, at 103, she is still telling people to get her coat and her shoes so she can go home from the hospital.
More soon as I get more news on Sammy.
Margot January 29, 2007 You are four years old today. We love you and we are so proud of you! I can't believe that you are four and then again, I can believe it, because sometimes you act like you are twenty. I'm know I'm not supposed to label, but you are FUNNY. So many times in the past two years when I have desperately needed a laugh or a smile it is you who provided it. Your sense of fun and adventure and DRAMA keeps us all laughing and on our toes. You have a vivid imagination and you love to dream. A lot of times when I'm driving you somewhere and you are quiet in the back seat and I say, "How are you doing back there Andy Boo?" Your answer is, "Stop talking to me, Mom, I'm dreaming." You have a definite ear for language and can already imitate people and accents spot on. Your Spanish accent is flawless at age four and your vocabulary is amazing - though your favorite word right now is butthead (thanks Dad). You are a monkey in the trees and love to climb to dizzying heights that make Dad and I very nervous. You love to play chase (or actually be chased is a better way to describe it). You love to scare yourself and when we are in Blockbuster you always pick out the titles with blood and gore on the cover and say in a very scary low voice with a dire expression on your face, "Look, Mom, Dad, a grrrooosss moooviie! That's too scary for me." You come up with funny questions like, "Mom, does Yoda speak Spanish?" You are very perceptive. When Grandpa was out and you and Sam were fighting over something and you were especially hard on Charlie and Grandpa said, "Andrew, stop that!" You looked right at him and said, "Grandpa, you are not enjoying us." It cracked us all up. You have an amazing way of disarming angry adults into laughter. You are a wonderful little brother and you adore your big brother Sam (when you are not fighting like dogs with each other). You always want to come when we go to the hospital and if you are there when Sam is getting a pokey you make funny faces for him. You stick up for him always and if someone is getting mad at him you say, "Don't yell at my brother!" You are very generous with everyone and will almost always share what you have. Sometimes even when you shouldn't - when Sammy tries to take your turn at something and we tell him no, you say, "It's ok, he can do it." Sammy loves you very much too and is a great big brother to you. He always wants to bring you back something from the hospital and when people offer him stickers or toys, he wants to get one for you too. You and he play together all the time and you love to hide from us together. You are beginning to be a great big brother too. Lately, I've been reading you more books about being a big brother and you've started being much nicer to Charlie. The other day you told me, "Sometimes, I like Charlie and sometimes I don't like Charlie." This is progress. You've been singing Charlie little songs you make up that are so sweet. You've started calling him Charlie choo choo. After you finish singing you'll say to me. "Mom, I just did something really nice to Charlie, I sang him a song." Or you'll say to Charlie, "Charlie, you're so cute" and then you say, "Mom, I just said something really nice to Charlie, I told him he was cute." It makes me laugh.
You are a lefty and very proud of that fact. You have a great natural golf swing. You love art and painting and coloring and superheroes. Dressing up and chasing bad guys is one of your favorite pastimes. And swordfighting has got to be your top. If I see you accepting an award on the academy awards one day, I won't be surprised. Your dad and I joke sometimes about your being discovered, "Who is that red headed kid? He can cry on command and for so long!"
We ordered Chinese food the other night and you wanted a fortune cookie. I told you I'd read your fortune and you said, "Don't read me my fortune, Mom, just give me the cookie." I did but I read your fortune and it said, "You stand in your own light. Let it shine." And you do let it shine Andy Boo, you let it shine for all around you. Happy Birthday! Love, Mom and Dad January 26, 2007
We had some good news today. We sent the scans out and the head of radioligy at another institution (don't want to start any radioligy wars here) would have called our scan clear or at least significantly improved. Hallelujah! We are so happy. This doesn't change much in terms of treatment but it sure as heck helps Neil and I out mentally. We had already talked about a plan going forward that would include oral chemo and some pills that are showing a lot of promise. This will give Sammy a break and a better quality of life - a lot less hospitalization. It's a reasonable thing to do at this point since there is minimal disease. We'll just stay on top of the blood work and VMA/HVA so that nothing gets out of control. Sammy is at school today and almost made it all week. He stayed home Tuesday with some bad stomach problems from the Cytox. He got hit pretty hard the last round of chemo even though we only did three days. He was very nauseous and I'm sure he lost the hard earned half kilo we'd gained the week and a half earlier. Oral chemo should be a bit easier for him to take. He's loving school and has been wearing his new sweatshirts that Grandma Joan brought him. I heard him yesterday as I dropped him off say to Joe, "Hey Joe, is that a new sweatshirt?" Joe said, "No, it's my old one." Then Sam said with a big smile, "Oh, because this is new." It was funny.
Tomorrow is Andy's birthday party and we are very excited. I will write more later. I have to pickup Sam from school. January 19, 2007 (4pm)
Well, though it sure looked good to us, the official report says it is stable disease in the left femur. There is still uptake. Dr. Willert says it's impossible to gauge whether or not the lesion is smaller with an MIBG scan. Either there is uptake or there is not. We'll have to do an MRI (which Sammy hates) and a bone marrow biopsy when his counts recover to see exactly how much disease is left. Then we can decide what to do from here. He's responding to this treatment- but how many rounds of chemo do we give him? Dr. Willert likes the double MIBG trial which isn't open at the moment. She's seen some good results with it but I don't think anyone thinks it's "durable." We are not so sure about it since it also blows through their platelets pretty thoroughly. She did say that we might want to think about three days of chemo from here on out to minimize toxcicity since Sammy bounces back in every time and seemed to do very well on the last round. Neil has some ideas on what we do from here. We'll of course post after the we get more results in a couple of weeks and I'll post next week on how Sam's responding.
We finally got the January 2nd VMA/HVA report on Monday of this week. We were thrilled that the numbers were the first normal VMA/HVA we've had in months: 3.5 and 4.3 We did another test on Wednesday and already got he results back on that one VMA 6.5 which is good, HVA 10.5 (back up above normal). Dr. Willert said it's really not that sensitive and that much difference doesn't reallly matter but normal vs. elevated does bum us out. Ugh. Though it's not a bad report, it sure took the wind out of my sails.
Margot January 19, 2007 (two year anniversary of Sam's diagnosis)
We had a 7:30am MIBG scan this morning and we left at 7:20. I was panicked because I know how Loreen (our favorite tech) has to stay on schedule and I asked her to schedule us first thing. I put a sleeping Sam wrapped in a blanket in the car with his warmed up clothes from the dryer wrapped in a blanket to stay warm, shoes, hearing aids, movies for the scans and all of his stuff to do all day. He got sick on the way to the hospital (car ride). When we got there I hurriedly popped him in his warmed up clothes, grabbed the movies, and him and ran through the halls to get to the scan. Loreen was calling me on my cell phone while we were getting there. We walked in at 7:45. I sat next to Sam at the start of the scan as I always do and looked at the screen from across the room. The scan starts from the head down and it was looking good from where I was sitting by the time it got to Sammy's shoulders. Neil had stayed behind to wait for Elizabeth and then followed us to the hospital. He walked in about when we were at the chest. He walked immediately over the screen and said to me in a low voice, "What is that?" Sure enough on Sam's left collar bone there was uptake. My stomach dropped. As the scan got lower everything was looking clean in the abdomen and pelvis. Right about that point Sam got sick again and we had to stop the scan. Loreen changed all the bedding and made me take off Sam's sweatshirt because if he had gotten any vomit (sorry about the visual) on it, it would show up on the screen. I said I needed to go to the clinic and ask Lauren for some IV zofran for Sammy. Neil said he'd go. While he was gone I was thinking, Sam got sick in the car, maybe it's on his shirt on the collar bone - hoping - not remembering that he wasn't dressed yet when he got sick in the car. After she does the entire body scan, Loreen goes back and does each section of the body by itself and there is a much better picture. I told her when we went back to the shoulders I wanted to take off Sam's shirt. I had my irrational urge to scrub at the screen and at Sam's collar bone and then to scrub at Sam's skin to make that spot disappear. We restarted the scan. Neil came back with the Zofran and we injected it into his port. His legs looked clean! There might have been one little pixel where the spot used to be but it didn't looked like it showed up on higher resolution screen. Neil left to go to work after we saw the legs. When we went back to do the spot scans, I took off Sammy's shirt. As soon as I did, I noticed that the dressing for his port was coming off some and was way over his collar bone. "Could it be his dressing?" Both Laureen and the nice tech guy who was helping her looked at it and said at the same time. "It could definitely be his dressing." Since that's where the injection went yesterday, some of the radioactive stuff could have definitely gotten on his dressing. Loreen got me some new tagaderm and I took off his dressing trying to be as sterile as possible. The spot scan of his collar bone was clear! I called Neil as soon as I saw it because I knew he was freaked out and I just about did a dance right there in the scan room. We don't have the official report back yet but it looked very good to us. I'll post the report as soon as we get it.
Sammy and I have had very long days in the hospital this week. We've left each night around six. We didn't start chemo this week until Wednesday because we didn't have orders on Tuesday and the clinic was packed. By the time we had our doctor's check it was 11:00 am and we probably wouldn't have actually gotten the chemo until the afternoon which would have had us home around eleven pm or so. I tried to get Sam to go to a half day of school on Tuesday but he wouldn't stay in his classroom. He really can't take walking in in the middle of everything. We got in there and he panicked and we had to leave. I should have known better because he was pretty reticent at my suggesting he go. Sorry Mrs. Gage. I feel like I'm always interrupting your class and causing a big scene.
Sam has been a champ all week and we've been having a lot of fun at the hospital together. Aside from getting sick this morning, he's felt well and, if I do say so myself, he looks like a million dollars. We've got a good routine down now. We go in, get hooked up, go down to the cafeteria for breakfast, go to the school room for a couple of hours (sometimes an hour), then go back and play video games, do lunch at the cafeteria after chemo and then in the afternoon we usually play board games and then towards the evening he watches a show (or today he watched a movie). Yesterday we got a little football out of the prize box and threw the football back and forth in the halls all afternoon. We had a few close calls with passing nurses. Sam is very in to football now since all of the Charger mania and Joe comes over and wants to play football. Miranda and her Dad came by today and it was great to see them. Sam loves having visitors. I have to say today that after my second nine hour day in the hospital I was feeling a little institutionalized - like Red in Shawshank Redemption when he tells Andy he doesn't know if he can make it on the outside. I was imagining myself telling Andy Dufrain, "Really I'm going back to two other children and a career? I'll have three children all together? But the nice nurses bring us things and when we are hungry we just go down to the cafeteria and get something to eat and it's so peaceful here playing chess with my funny happy six-year old." Also, Children's Hospital San Diego is doing an integrative medicine program for patients and their parents. They had a pilates class today and people coming around to give massages. Sam came with me to watch me do pilates at noon and I got a massage while he was playing video games. I almost felt like I was at the spa (ha ha). Of course I was so happy to see Andy and Charlie when we came home. As soon as I saw their little faces I was happy. They were both very very excited to see us and I missed them and missed knowing what was going on in their day.
Another part of the institutionalization feeling is that if we have clean scans now, we have to figure out what to do next. There are many options and I keep hearing Dr. Villablanca in my head saying, "nothing is durable" so I think "why don't we do something that is new and promising instead of something that is known not to be "durable." Anyway, there are some new vaccines we'd like to get in line for and we will be talking about options with Dr. Sholler and Dr. Willert in the next few days and we'll post when we come up with a plan. Neil has every option mapped out with data, he's talked to parents who've tried different things and every doctor about every option. I feel as if the wolves who have been howling at the door have left to roam around the forest and we need to decide if we risk sending Sam out to play or if we double barricade the door. We are under no illusions that the wolves will not be back and we need to take measures to keep them at bay.
Sam was going to be star of the week this week at school but since we aren't there it will have to be another week. We worked on his poster today in the schoolroom and I thought I'd share what he wrote here. I'm sorry I can't redo the pictures he drew as well: I am 4ft.tall. I weigh 40lbs. My hair is red. My name is Sam. My favorite things: soccer & video games I do not like: bees, pokeys, cheetos I wish: I could go back to Australia I wish: I could go to my Grandpa's house and play in the snow I wish: I could see my cousins again I guess we'd better start making some travel plans. ;-)
Andrew's birthday is next week. We are having a pirate party at the aquarium and he is getting excited about it. His favorite thing to do these days is to color. He'll sit and color for an hour. He's very meticulous about getting in the lines and is holding his crayons correctly and everything. He topped off my day today by eating all of his green beans at dinner. Normally, he won't touch a green bean with a ten foot pole but tonight we made the very important discovery that he actually likes green beans as long as they are dipped in ketchup.
Charlie is rolling around a bit more now and I can tell he's working on figuring out how to move from one place to another. I can see it when he's on his tummy looking at toy, he's figuring out how he can get to it. He continues to be happy and laughs at his brothers all the time. Just the sight of them makes him happy.
Thank you so much Amy and Colleen and Darcy for dinners this week. You have no idea how much they helped.
Margot
January 11, 2007
Our scans are scheduled for next week. They'll be on Wednesday and Thursday and we'll be in doing chemo anyway so the timing actually works out. Dr. Sholler wants us to do at least a couple more rounds of chemo regardless of what the scans tell us. I was really hoping Sam would get a break but maybe in February. He's at school today and has almost made it to two full weeks of school now and he's loving it. He missed Tuesday this week because his feet were sore from wearing his heelies at the Wild Animal Park on Sunday. I think he actually bruised the bottoms of his feet because he practically couldn't walk by the time school let out on Monday. They are getting better though. He also has had and awful rash on his body for the past four days and we spent most of yesterday at the dermatoligist trying to figure out what it is. They think it's a reaction to some of the supplements we've been giving him so we've stopped. Poor guy. Just what he needs-for us to be giving him troubles. He's very excited that we get to walk home from school today and Little Joe is coming over. I'm just about to drop off Andy at preschool so this will be a short update. Stephanie is here and to say she's been a help is a huge understatement. Neil keeps teasing me about my "team" of helpers but it sure is great to have them. Happy Five Month birthday Charlie! More soon. Sorry this is so quick.
Margot
January 4, 2007
Happy New Year! We had a fun New Year's Eve at Darcy and Mike's house. There were plenty of kids and they all had a ball. Darcy and Mike's house is kid's paradise. The best part of my night was right before we all watched the ball drop in New York (9pm our time)- the kids were dancing. Sammy was out there doing his cool-guy moves right with the rhythm of the music and Andy was flailing around wildly and jumping up and down. New Year's Day I pretended we were Italian and made lentils and sausages for good luck (it's a lot easier than the Hoppin John that my dad makes on New Years's day- not quite as good though). I figured we could use some luck.
Sammy has been to three days of school this week. Wohoo! He is so cute. He was doing his math homework last night and I was trying to explain greater than and lesser than and he took the pencil from me and drew teeth on the symbol and said, "Here Mom, this is how you remember it, the crocodile wants to eat six fish, not three fish." Obviously Mrs. Gage has a much better handle on teaching six year-olds than I do. We did ascorbic acid on Tuesday after school, yesterday we had off from the hospital, and today we go in for a blood check and tomorrow is another ascorbic acid infusion. We are up to 25 grams now.
I went to school during recess today to bring a library book that we'd lost so Sammy could check out another one today. I had to buy a new one at Barnes and Noble. As my Dad used to say, I'd lose my head if it weren't screwed on. I was trying to use the key finder Colleen and Deb gave me for Christmas this morning to find my keys and nothing was beeping in the house. It turns out they were in the door to the car. Luckily, the car was still there (it's a good thing Neil is usually too busy to read this). Anyway, I've rambled off topic. At school, I watched Sammy from afar playing at recess and got such a lump in my throat. He's such a great kid and we ask so much of him. He took ten pills this morning before school. Ten. And that's only part of what he'll take today. Neil took the pills with him but I couldn't believe Sam swallowed them all down. I had to give him a shot in his leg last night which he just hates and he has to go to the hospital again today after school and tomorrow. Yet there he was running around with the other kids and doing his darndest to keep up. He ran up to me with a big smile on his face.
My amazingly energetic husband has been working nonstop reasearching, talking to doctors, trying to find therapies that have worked in other cancers that might work in neuroblastoma. He and John London have been tireless in their efforts. I breezily report here how much Neil is doing on this front but I don't think I really convey how much of an impact he is having and how much progress parents are making in terms of driving therapies.
I've been catching up on work this week, trying to get back into the routine of school and hospital and work and parks and bracing for scans next week.
Charlie is doing great. He likes to hang out and hold onto his feet and he's a very enthusiastic eater. I just dropped Andy off at preschool and he was excited to go today. We're gearing up for his birthday party at the end of this month. Lately he's been asking everyone when they were a baby.
Stephanie is coming today for a week. We are very excited to see her and to have an extra set of hands and maybe be able to give poor overworked Elizabeth some much needed time off. I should get the scan schedule today at the hospital. Will post dates and times.
Margot
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Very unhappy Charlie -only lasted five minutes in any costume ended up going as himself 
Hulk and Drac getting ready to Trick or Treat 
