Happy Pre-4th!
By Margot | July 3, 2008
The boys are doing fine. They’ve gotten over their coughs are back to regularly scheduled summer.  Sam and Andy have been taking some desperately needed swimming lessons this week. They are both strong swimmers but have no form or function whatsoever. I was chastising myself after watching their first lesson - thinking to myself “How have I let the boys get this old without knowing how to side-breathe?” Really can I be more ridiculous? Sam has been tearing it up in baskbetball. If I can ever figure the whole video thing, I’d love to post his face after he makes a basket.  It really is awesome.  Our summer league team is stacked with talent. Mike and I like to say it’s all coaching but… Â
Sam’s been moody the last few days, weepy, mad, goofy, you name it. I don’t know if it’s the end of the chemo cycle that’s doing it or something else. He’s much better today though, he slept in until ten this morning so he may just be worn out. By choice, he’s keeping up with all his friends and brothers in summer activities and I marvel at how it does it sometimes.  He threw up a couple of times yesterday -cumulitive effect from the chemo but was good about it as always and didn’t make a big deal.   We are on our off day from chemo. I was wrong in my last post. We didn’t start until last Saturday. I’m all screwed up with the schedule.  His numbers have been good. HVA/VMA this week are 10 and 12 (still above normal but getting where we like them to be. His VegF numbers this moring from Dr. Belanger was great according to Neil and Dr. Belanger.  VegF is an inflammatory number that can be a cancer marker (as long as your ankles aren’t broken). Sam’s ankles are still holding strong.
We are getting ready for Sam’s laser tag party next weekend. He’ll be eight. Holy Cow! I’ll stop and ruminate on that and all that it means to us in some future post. Amazingly Andy will turn seven on the day of Sam’s birthday party. He gets to skip one and a half years so that he can participate in laser tag 
. Charlie boy is cute and funny. He is a ham if I ever saw one and now can do all sorts of different voices when he wants to be scary or mad. The friend birthday parties are coming fast and furious and Charlie’s got the routine down now and as soon as we get somewhere and he sees presents he starts asking for pizza and cake. It cracks me up.
I expect Sam’s red blood count may drop next week in the middle of the one chemo only week. We have a blood check on Monday and I’ll post again then. Please keep Sam and Max and Will and Erin and every kid fighting this awful disease in your thoughts. Also, our hearts go out to the Daily family who lost Joe on Sunday. He was an inspiration to the entire NB community and to many outside it : http://www.mlive.com/flintjournal/community/index.ssf/2008/06/a_teacher_and_inspiration_joe.html
Margot
Topics: Progress Reports | 2 Comments »
Trip/Home/Summer/cough
By Margot | June 25, 2008
Me and the Three Wild Indians at Bandelier
Sam and Charlie on Grandpa’s tractor
Sam guiding on the river. I dropped the throw-away camera in the water -thus the spots. Good thing I didn’t bring our good camera on the river.
Andy guiding on the river
Andy jumping at Bandalier
Sam climbing up to the caves
Grandpa reading to the boys
Boys turning Grandpa and Charlie upside down on the hammock
New Mexico Sky
We had a wonderful trip to New Mexico. I had a guy friend in college who used to call me the New Mexico Chamber of Commerce. The boys were busy. They all rode horses - even Charlie who kept saying “Mom, I’m on beeg hoas!” He didn’t want to get off. I got Sam and Andy to trot a little and they loved it. I definitely got my exercise. Sam’s favorite part of the trip was river rafting. It was a fantastic day and we had a guide who was great with kids. He let both Sam and Andy be the guide for a while and they loved barking out “Backwards paddle! Forwards Paddle.” It was fun. Andy’s favorite part was climbing in the Indian Caves. Both Sam and Andy made it all the way up to the big ceremonial cave with Grandpa. I stayed below with Charlie and I heard a huge yell from Andy when he got up there, “Dude, this is awesome!” Everyone who came down from the cave while the boys were up there said, “Your boys are funny.” The hike was two miles round trip and Sammy got a little tired. Andy ran ahead with Grandpa and Charlie and Sam and I took our time. Charlie fell asleep in my arms on the way back on the hike and Sam and I read all the signs posted about the wildlife and watched the squirrels.  Hard to explain but it was very special to be walking through the woods by ourselves with Charlie sleeping in my arms, talking with Sam about things and hearing Andy’s exclamations way ahead with Grandpa. My mom and my cousin Darby (who is 23) came up on Friday. The boys loved Darby and played with her all day for two days. She was so great with them.  I inluded the picture of Grandpa upside down on the hammock because I think it’s pretty representative of how he and Stevie must have felt when the Three Wild Indians came to town. The damage report from Hurricane Hutchison was considerable. We had a trip to the hospital but it did not involve Sam. Andy climbed up very high in the juniper tree and Stephanie went out to help him down. She had him in her arms when the branch she was standing on broke and she fell back with Andy in her arms onto a rock and broke three ribs. Not really how she was expecting to spend her summer (recuperating). We hope she’s feeling a little better now, it’s almost impossible for her not to try to take care of everyone, I hope she’s taking care of herself. Charlie colored on the couch, Andy broke my Dad’s computer desk door, we lost the sprayer for the garden. Anyone want some house guests this summer?  My dad got me a back massage for my birthday and the very nice woman, Melissa, who works with my dad came to his house. After I got my massage Andy walked up to her and said, “Don’t I get a massage?” So she said she had some time and she gave both Sam and Andy back massages on her massage table.   Grandpa walked into the room when Andy was getting his back rubbed and Andy said, “Could I have a little privacy please?” My dad thought that was so funny since Melissa is a very pretty lady. The last day before we got on the plane we had breakfast with Erin and Stein Johnson and their beautiful family. Their daughter Maddie is an NB survivor. She is Andy’s age.  Erin has been a huge help to us when we are in New Mexico and when I told her Sam might need blood she called St. Vincents and arranged everything for us and told us to call her any time day or night and she would come down to the hosptial and do the tranfusion. She is a flight nurse. It was odd because we discovered at breakfast that we went to high school together and graduated in the same class (a little creepy if you think about it in NB terms). Erin told me there is another girl we graduated with who’s daughter had rabdo and then a brain tumor. To say that hasn’t had some affect on my psyche over the past few days is a lie.
Neil had a relaxing time after he got back from Vermont and said he had a very good meeting with a lot of good ideas in the works. I called him on Friday night and he said, “I’m relaxing. I’m at the Catamaran with a glass of wine, some short ribs ordered and three cancer books and a ton of cancer papers to read.” I thought that was kind of funny. He did watch Will Ferrel’s Semi-Pro, which he said was the best Will Ferrel movie so far (for all you Will Ferrel fans out there). That’s a good one to watch without me
Sam felt pretty good though I think he was slightly anemic on Thursday. We took him in for counts on Monday morning after we got back and he was at 9.5 so just coming up. His VMA/HVA from last week was VMA 9 (down .5) and HVA 14.5 (down .5). He starts chemo again tomorrow. We went in to the orthopedist on Monday afternoon and got more x-rays. His growth plates are still wide from TM and Dr. Chambers chastised me for letting him play basketball. Neil and I decided that we will take him off of TM permanently (we had lowered the dose and only given on certain days)  so that we don’t keep closing and widening his growth plates (Dr. Chambers said they’ll eventually stop growing). If we knew that TM was the magic bullet, we would keep him on it but we’re not willing to take away sports, one of the things that gives him the most joy for something that isn’t a sure bet.
Sam is still coughing but his lungs sound clear to everyone who has listened to him. Charlie came down with croup again last night and he and I were up walking outside in the middle of the night to give him some cold air to breathe. I think it’s just gone around in a circle. Charlie had it, gave it Andy who gave it Sam, and now Charlie has it again. Sam and Andy just got it in the form of a cough. Everyone seems to feel fine and they’re all running around as usual. Sam is just coughing every once in a while and we’ll have to see what happens with Charlie in the next few days. Â
The boys have been in the pool quite a bit since we’ve been back and yesterday we went to the beach with the Storch’s.  Natalie and Sam get along really well (you’d think they were a couple if they weren’t in second/third grade). Neil and I took the boys down to the pier last night and it was beautiful. They love running down the pier and watching the surfers. Â
Our schedule is filling up so I hope to have everyone back in good non-coughing health soon.Â
Eeks. Sorry for the long post.  I think you are up to date now. Â
Please check in on Max Mikulak and Mashed Potatoes for Breakfast and leave some birthday messages for Max. He is turning seven this weekend.  http://www.mikulak.blogspot.com
Margot
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Topics: Progress Reports | 2 Comments »
Numbers Update
By Margot | June 17, 2008
Wohoo! VMA 9.5 (down from 12) and HVA 15 (down from 46) Isn’t perspective funny? Six months ago I would have had a heart attack at 15 HMA and now I’m happy as a clam. Celebrating actually. Red blood is down to 8.3 and with one more day of irrino we may slip below 7.5 on our vacation. Dr. Willert thought we’d be fine and on our way back up so we did not do a Spencer Dolling recreational transfusion. I hope we don’t regret that. Beth (our friend the nurse) gave me a 3/4 inch needle should I decide Sam needs a transfusion in New Mexico. The good news is that we happen to know a nurse, Erin Johnson, in Santa Fe whose daughter Maddie is an NB survivor so I can call in the troops if I need.  White Blood is 3.5 ANC 1900, Platelets 197. All down considerably but everything holding it’s own except for red blood. Will update with vacation stories soon.
MargotÂ
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Topics: Progress Reports | 4 Comments »
We’re Off
By Margot | June 16, 2008
After a big Father’s Day Breakfast, homemade cards from Sam and Andy and an hour of basketball at the park, Neil hopped on a plane to Vermont yesterday for meetings today and tomorrow with Drs. Sholler, Durden, Brown, and Meryl Whitmer, Paul Brunskow and Pat Lacey. No need to comment on the different facets of fatherhood that Neil juggles, I’ll let his Father’s Day speak for itself. The boys and I miss him already. Hope all Dad’s had a happy day.
In Vermont they will be discussing lab results, treatment options and next steps and possible new drugs.  Neil will come back on Wednesay. Today is Sam’s last day of school.  I woke him up for his chemo early and then let him sleep a few hours.  I have funny thoughts when we do moring chemo I tell myself sarcastically, “Just giving my son his chemo and sending him off to school” inserting chemo where most mother’s might insert “healthy breakfast.” I do do healthy breakfast too (though not today because the boys ate a once in a lifetime, not at the hospital, bowl of Lucky Charms they talked me into buying - Andy said “This is a dream come true.” as he was eating them).Â
We leave for New Mexico tomorrow barring any nasty surprises at today’s after school blood check. Sam got to bring a board game to school and Colleen and Jennifer Sowers (the room moms) made t-shirts that say “Mrs. Gage’s 2nd Grade Class - We Rock!” and the kids get to decorate them today.  Andy is having a playdate with Beau at the moment -another dream come true for him and Charlie has been out to see the trash trucks all morning - it being Monday and all.  I’ve set up river rafting for my Dad, Sam, Andy and me for Wednesday of our trip. We’re going to shoot the Taos Box. Just kidding, that’s like class seven rapids for those of you who don’t know. We’re going to do a kid-friendly, maybe a rapid here and there, trip down the Rio Grande/Rio Chama. My Dad and Stevie have set up a bunch of great things for the kids to do - a wildlife refuge visit for the boys where they’ll get to hold some baby coyotes and racoons, horseback riding, an air show and a day at Bandalier where they can climb around all the Indian caves.  I hope Sam is up for all of it. If not, we’ll adjust. He finishes the irrino tomorrow morning. So far this week, he’s been great energy wise -a little cranky here and there but nothing to write home about. He’s been watching the basketball finals with great interest and is rooting for the Celtics - he was bummed they lost last night. In the scrimmage last Friday he made three baskets and Andy made one. They were both so excited. I get last week’s cats back this afternoon at the blood check and to say I’m apprehensive is a very big understatement. I’m crowding out all the aprehension with a crazy to do list before we leave.  I’ll try to update when I get the numbers so as not to leave you hanging before we go on vacation. I’m taking my laptop for work purposes, so maybe I’ll update mid-week.
Happy Birthday to Miss Erin Buenger this week! Hurray for us Geminis.
MargotÂ
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Topics: Progress Reports | 1 Comment »
The Tale of Two Cities
By Margot | June 11, 2008
In Normal City we are rushing around doing all of the end of the year stuff for Sam. He a puppet show in class yesterday, he was the narrator and the snake in “The Tortise and the Hare. “ He did a great job and we all went to see it. Today is the summer birthday celebration so we brought in cupcakes for his and Joe’s birthday celebrations. I burned the whole first 24 cupcakes (slightly distracted yesterday) and Neil had to go out and get more stuff. I was quite the cupcake factory yesterday afternoon but the second batches were fine and the boys helped me frost and sprinkle them.  Sam also had his Around the World Tour Today where the kids go to different classrooms that represent different countries and learn about their culture. Sam’s class is doing Puerto Rico and he is reading about the food they eat in Puerto Rico. I booked a trip to New Mexico for the boys and I next week. We’ll leave on Tuesday after school gets out and come back on Sunday the 22nd. Basketball starts today and I’m trying to think up some good first practice drills so I at least seem organized.  Charlie is better and now is asking me, “Mom, wats tis?” for the name of things all the time. I love this age.  Andy is out of school and keeping busy. He skinned his knee yesterday and cried for at least 45 minutes straight, I finally put him on the couch with a blanket and he fell asleep at 6pm and slept all night.
Meanwhile in Cancer City: There is a petri dish in Vermont in Dr. Sholler’s lab that is growing the cancer cells from Sam’s bone marrow biopsy. The cells that are growing are the nasty, bullying, stem cell type that insist upon replicating. I called in to Jayne yesterday to schedule the blood draw that we need to do today to follow up on the Nestle trial. It was quite a feat to get it so that Sam wouldn’t miss pizza day, his birthday celebration at school and The World Tour he wanted to do and still be able to get the blood in to Fed-Ex. Jayne and I settled on 7:30 this morning so we could do the draw and get to school by 8:30. Jayne said if we were drawing blood by 8, I’d be in good shape but the nurses are just getting in around 7:30 so it might be a little early. (Christina was there and zoomed us in and out.  Sam and I made it just a few minutes late for the World Tour but he’ll get to do it.)  I also scheduled a CBC and hem panel for next Monday before we leave for New Mexico. Since it’s Sam’s last day of school, we had to dance around his schedule there again. As I was getting off the phone with Jayne, I said, “Oh by the way, do you have last week’s VMA/HVA numbers?” “Yes, she said, they are back. Dr. Willert is going to call you with them.” So that just hung there in the air there for a minute while my heart started hammering. “Dr. Wilert is going to call us with them?” “Yes.” “Today?” “Yes.” So I hung up and stared at the phone and I started to tap on my desk and stare at the phone. After much pacing and tapping and phone calls to Neil.  Neil called me with: The VMA is down to 12.  Sigh of relief. HVA is up to 46.5. S%*it. What is going on in Sam’s little body? He doesn’t have any bone pain, which he’s had in the past with high Cats.  Since the numbers are so split, I don’t know what to think. We just did a CT to rule out soft tissue disease. We did another urnine test today.   The good news is that we should have Sam’s morpho report from Dr. Brown in Texas early next week. That will give us some clues as to what might and might not work. If we have to switch quickly based on today’s urine numbers, we may have to postpone our trip but we’ll cross that bridge when we come to it. Sam’s hair is starting to fall out. Not in big clumps like it did with IV Topo/Cyclo but in little hairs on his shirt here and there. Neil mentioned to me this morning that it looked like it was thinning and then on the way home from the blood draw this morning, Sam said, “Mom, there is hair all over my shirt.”   I guess we can be thankful that the school year is over. Aside from the hair, he is still feeling fine and doing all his normal stuff, excited to start basketball tonight. He weighed in at 23. 8 kilos with no shoes and no sweatshirt so weight-wise he’s great. We ran in to Melissa and Max in the clinic this morning getting a CBC in case Max needs platelets this afternoon. They were on their way to Max’s MIBG scan. Max looked good and seemed in very good spirits. We talked about getting some flame stickers for his wheelchair.  Please think good thoughts for his MIBG today.
Margot
Topics: Progress Reports | 2 Comments »
Guess Who Won at Bowling?
By Margot | June 7, 2008
 Just a quick update, just wanted to post these pictures, they made me laugh because someone has his hands up in practically every picture Alex’s mom showed me from bowling.
We started chemo again this morning. Basketball “draft” was last night. Sam and Andy both did really well and Charlie threw a football into the middle of the gym to gum up the process throughout. Our first game is next Friday -will keep you posted. Andy “graduated” from preschool on Thursday and the room mom’s put together a CD of pictures from the past two years of all kids with songs that had all the mom’s in tears.  Andy is very proud to be going to kindergarten.  One more week for Sam and then summer here we come…
MargotÂ
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Topics: Progress Reports | 3 Comments »
Quote of the Week
By Margot | June 4, 2008
Last week after the CT scan Sam and I went out to lunch together at Konos. Konos is a little surf shack right on the boardwalk with one of the best breakfasts (and lunch) in town for not much money and basically smack dab on the edge of the Pacific Ocean.  You wait in line to make your order and then go sit on the deck and look at the ocean and people watch on the boardwalk until your food comes along. Sometimes if you are lucky, the naked rollerskater guy will rollerskate by in some crazy get up (always with only a thong on the bottom) and give you a good conversation topic. Fortunately for the people who own Konos and unfortunately for those of us waiting in line, Konos has been discovered by tourists and (especially in the summer) the line can wrap around the block. I figured 11:30 on a Wednesday couldn’t be too bad but there was still a hefty line when we got there. While you are waiting in line at Konos you can always read the stupid quote of the week. Some of them are very funny, like “What is in your coffee?” or last week’s was, “Can I have my eggs sunny side down?” Anyway, as I was standing there I was inspired to post some quotes from the past week and get a quote of the week going of my own.Â
Sam’s quotes of the week: “What, you mean you and Dad don’t get the summer off? Why not? You have to work through the summer?” Five minutes later: “I think I know what I’m going to be when I grow up…….President of the United States so I can make a law so people don’t have to work in the summer.”
Sam while watching hockey two nights ago: “Do they lose their teeth on the ice?” Me: “Yeah, I’m sure they do.” Sam: “Well how does the tooth fairy get them, do they even get money for those teeth?”Â
When I just went to give him some medicine at school: “Mom! Guess What? My sweatshirt? It’s MADE IN CHINA! CHINA! Look at the tag, do you want to look at the tag? See? It says CHINA!”  It just killed me, he’s so cute.
He had another good one about who he’s going to marry but I may get in trouble if I post it.
Andy’s quotes of the week:
“Uhhh….. Don’t come down here yet!” This as I’m walking down the stairs. He’d taken a bag of chocolate chips from the kitchen, opened them in an exploding fashion and there were chocolate chips covering every single section of the carpet. Â
After being asked if he wants to do theatre camp this year: Theatre Camp? No. Not unless they have fighting camp and I can be in a Star Wars or Ben Ten Movie.” Me: “Well you could practice for being in those kinds of movies in Storybook camp.” Andy