Football and Rock Stars
By Margot | January 4, 2009
At the Wild Animal Park- Charlie is sleeping nearby in the stroller- Andy just missed putting bunny ears on me by seconds, can you tell by his hands?
Charlie the Rockstar
Well, I don’t know that we’ll be signing any record contracts or going on tour any time soon but we sure are having fun with Rock Band. Sam switches off as the singer or guitarist, it’s either Dad or Andy on drums, I sing or do the guitar and Charlie plays the guitar (when it’s not actually on) and him banging his head and dancing to the music is awesome. As the mother who is always nagging the kids to get off the video games, and limiting their time, I’m a Rock Band convert. Neil is a really good drummer, he can do the expert level -he played drums for years and it’s funny to see how the drums are really played by someone who has rhythm vs. me whose arms are flailing all around every which way. Our friend Meredith says it’s ok, because every family needs someone who looks like Animal from the muppets – that would be me;-). Andy is a getting pretty good at the drums and Sam is great on the guitar and vocals. His adorable eight-year old friend Natalie was over a few days ago and was the singer belting out “Roxanne, you don’t have to put on the red dress tonight. You don’t have to walk the streets for money.” Probably not the best influence. I was joking with Neil that we could be the next Partidge/Osmond/Jackson family – Ha ha. Maybe in bizarro world.Â
Sam has popped back to his normal self in the last week and hasn’t complained of any pain so it must have been still due to the Velcade. I hope so anyway. We did something we don’t normally do and didn’t even call on Friday for his urine numbers and therefore have been blissfully ignorant of them this weekend and I can tell myself they went down whether they did or not. Neil is still reading every paper that he can and trying to track down more options for us.
Our househould went nuts last night during the Charger game. We had the Monaco family over to watch the game and the boys hugged and tackeled each other when the game went into overtime and then went completely crazy when we won the toss and Sproles ran in the touchdown. What an exciting game! Sam is so happy today and was getting really worried in the last few minutes of the game. The Chargers gave him a late Christmas present. He’s on day five of radiation. We took a three day break for New Years which is good we think because it gives the stem cells time to come out of hiding (that’s a theory anyway). Sam is taking some supplements that are helpful to radiation so hopefully we are knocking that leg lesion.
We’ve been pretty relaxed this last week of the holiday. We did get out to the Wild Animal Park last week and it was a beautiful day. We had a lot of fun and a nice long walk until it got pretty packed. The boys got to hang out with the Bonebrake boys yesterday and had a Backugan brawl.  We’re off to the park today and then tomorrow is back to school and schedule crazy.  Sam’s radiation appointmets have been at 7am which he is not all that happy about on his vacation but is perfect because we are in and out of there in a matter of minutes. Neil and I have been taking turns taking him in and it was nice this morning to walk out of the hosptial holding Sam’s hand and see a beautiful sky and be ready for the day. Sam and I tell each other we are up with the worms and the birds ;-). I thought to myself as we walked towards the car, “Please let us do right by our amazing little boy.”
Anyway, wanted to get this post in before it was tainted by possibly worrisome numbers and/or scans all coming this week. Hopefully it will be all good news. Happy New Year to All!Â
Margot
Topics: Progress Reports | 4 Comments »
Christmas and Post Christmas
By Margot | December 30, 2008
If we can ever get Andy to do a straight photo, it will be amazing. We took this in front of the tree on Sunday night. The boys were practicing taking pictures and wanted to try one with the timer. We had a very good Christmas. The boys were so excited that Santa came. They all got a lot of loot. Santa brought them RockBand which they play with all seriousness, though Charlie rockin’ with the guitar singing “I Love Rockin’ Roll” is very funny. Grandma Joan found Backugans which Sam and Andy are obsessed with and are all sold out in California and they got outfitted in all their favorite surfer/skater dude gear by all the grandparents.  Charlie got a trash truck from Maureen on Christmas Eve and he was pretty much done. That’s all he wanted to play with.  I gave the boys Pictionary and we’ve been playing that quite a bit and laughing a lot. Â
 Sam walked into radiation today and one of the young techs said, “I love the way he dresses, he’s so cool.” It cracked me up. I told her he is our style man. He’s been going to basketball, playing with his friends and going to holiday get togethers with energy and cheer. Underneath it all though, cancer is brewing. His VMA/HVA we got back the day after Christmas was 26 and 28. The stress and terror that those two numbers bring to Neil and I is not really explainable but it is an undercurrent in all that we do.  We’re are now forced to think ahead while trying to take one day at a time and see if the radiation and velcade do their thing.  Sam’s also in the last few days decided he has no interest in food at all. For the past couple of weeks he hasn’t been eating as much but lately it’s been a struggle to get him to eat during the day though he’s been good for some late night sandwiches and milkshakes before bed.  I’ve upped the zofran and started back on Megace. He went to basketball practice last night and ran around but this morning both of his legs hurt in the hip area and he’s not up for much today.  Not really what we want to hear with high numbers. One good thing is that his blood numbers are great. ANC was 6.1, LDH was in the 720’s, Red Blood was 10 point something and platelets were 221 (this is all from memory but they were all good).
I’ll update with more news when we get it. Don’t know when we’ll get back Monday’s VMA/HVA due to the holiday. We have scans on January 8th and 9th and have planned a family trip to Hawaii on January 19th.  Please think good thoughts for Sam.
Also, please think good thoughts for Eden Adams family. The beautiful Princess Eden passed away yesterday afternoon.
Margot
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Topics: Progress Reports | 9 Comments »
Velcade, Radiation and a Partridge in a Pear Tree
By Margot | December 24, 2008
Sam got his first injection of Velcade on Friday of last week and his second yesterday. It goes on day one and day four. We got into the hospital at 7:30am Friday so I could try to get him to meet his class on his field trip for a Wizard of Oz play. Velcade is a simple injection into Sam’s port that takes all of 10 seconds but it’s kind of like dog years in hospital time -or would that be people years for dogs? Once you get the blood check, doctors check, velcade ordered from the pharmacy and add to that that it’s a Friday and it’s a zoo, it takes close to four hours for a ten second velcade push. The nurses were great though as usual. We got to the middle school production of The Wizard of Oz right about when Dorothy met the scarecrow. I have to say that it was kind of a painful production so it wasn’t too bad that we were late. It did bring back memories of me being in our sixth grade production of Wizard of Oz. I was the scarecrow and sang “If I only had a Brain,” I still know all the words. I was hoping that I was much better than the scarecrow we saw on Friday but it’s not likely. Sam felt pretty crappy through the whole play. His stomach hurt and he didn’t want to go back to school, he fell asleep in the car on the way home and then slept most of the afternoon. When he woke up he was fine and perky all night.  Saturday he started to have pain in his lower back and tailbone. Dr. Sholler said it’s probably neuropathy from the Velcade and Rhonda Dudley said Sydney had lower back pain after Velcade -thank you Rhonda, if you are reading this, for calling us back it helped make us worry less that it was disease. Uncle Dave was in town for the weekend and the boys had a great time with him. It was really great to have him here. Thanks for coming Uncle Dave. We went to SeaWorld on Sunday for a few hours and Sam sat in the stroller most of the time because his tailbone hurt. Charlie didn’t mind though, he’d rather run than ride anyway. We had to pull him (Charlie) away from the Clydesdales, he’s really horse crazy. Monday we went back in to do the day four Velcade push. It was a bit quicker but not by much. We had a dentist appointment while waiting for the Velcade and Sam has cavities in between his teeth. Arhgh. So we have to go back and get those taken care of in a couple of weeks. Poor guy. Today we went in to have his legs mapped out for radiation.  He did great as usual and Dr. Mundt was asking where his heelies were and remembering that he never needed to be sedated even when he was really little. Sam talked football with the techs, he and I have been reading the sports page in the waiting rooms and we’ve read every Charger article there is. I now know more about Charger Football and personnel than I ever thought I would.  Dr. Mundt said that he will be able to avoid the growth plate for radiation Sam will do ten days. We start Sunday at three, then Monday and Tuesday of next week.  We’ll take a break for three days, hopefully giving the stem cells time to come out of hiding so we can hit them again (there was a study done with Medulloblastoma and radiation which showed that the really tough yucky cells go into hiding and it’s good to give the radiaiton a break for a few days and then hit them again). Then we’ll do Saturday, Sunday, etc. of the following week. Sam’s VMA/HVA was 16 and 18 this week. Staying in the high range. Hopefully, the velcade radiation combo will remedy that. We have scans again in mid-January so we’ll know pretty quickly if things are working.
Sam was feeling good enough to practice basketball with Andy’s team last night and made a few from downtown. He has practice with his and Neil’s team tonight at 5:15. I told him he didn’t have to practice if his tailbone hurt. As usual he said, “Nah, I’ll practice. Can i get some Tylenol before practice?  This past Sunday morning at our house was lots of yelling and screaming as the Chargers beat the Bucs to keep their playoff hopes alive, then when Sam and Andy found out that Denver lost, they were thrilled, it was like an early Christmas present.  They sent off a letter to Santa, with a stamp and address and the whole bit. They asked for Rock Band for the Wii. Andy keeps adding things mentally that he thinks of and asked me the other day if Santa knows what you are thinking of wanting even if you didn’t put it in your letter.   We are about to bake cookies for Santa and the boys are counting down the days and hours. Sam said he’s going to try and stay awake and see Santa. I told him Santa only comes if everyone is asleep, he said he is going to keep one eye a little open so he can see Santa but Santa will think he is sleeping. I told him I didn’t think Santa would fall for it.   Neil and I just finished our last minute Christmas shopping. Grandma is coming at 6:30 tonight and we are all excited to see her.  Her Christmas letter by the way, was five pages. Not sure much editing went on there. Ha. ha. We love you, Mom.
 Margot
Topics: Progress Reports | 5 Comments »
Home Sick
By Margot | December 17, 2008
 Watching the Christmas Parade
In the Wagon being pulled to the parade.
Sammy has been home sick all this week with a bad sore throat and feeling cruddy in general. His eyes are all red underneath and he’s lost his voice. Andy was home most of last week with high fevers and headaches that finally turned into a cold.  We took Sam in to get a strep test on Monday. I tired to take him to the minute clinic at CVS around the corner (silly me) because our pediatrician is an all day deal with the wait unless you get there the very first thing in the morning. It was pouring rain and cold and I didn’t want to make Sam hang out all day in the doctor’s office. Colleen got little Joe tested at the minute clinic and was telling me how easy and fast it was. I figured just for a strep test, they couldn’t screw it up too much. Sure enough there was a guy there just waiting for a patient to show up. He seemed excited to have us and got the strep swab out and all ready to go and Sam sat on my lap feeling yucky while we gave him our name, address, insurance, primary care doctor. Lastly, he asked me if Sam was on any medications. I looked right by my elbow and there was the strep test, just waiting to be used.  I pondered, should I just say no medications? Of course I didn’t and as soon as I started rattling off what Sam was on, all bets were off and he had to get all kinds of authorization to give Sam a strep test. I assured him that Sam was in no way immune suppressed and called Jayne, our case manager at Children’s, who gave him authorization immeidately but he still had to talk to some high up mucky muck at CVS who wasn’t answering his phone so Sam and I left with no strep test.  It was frustrating to say the least. But it turned out we had to be in the hospital anyway that afternoon. All three boys had a dentist appointment (our dentist is at Children’s) so I told Jayne I’d stop by the clinic to get the strep test before taking everyone to the dentist.  As soon as I got the clinic they said no dentist today for Sam, should have figured that one out on my own I guess since his throat hurt so badly he didn’t even want to brush his teeth before leaving but I’d postponed the dentist about 17 times now and was afraid for his teeth. Anwyay, he had a fever which bought us a bed and a blood culture and all day stay in the clinic for a doctor’s check, a strep test (negative by the way) and IV antibiotics to cover any possible line infection. Neil came from work and spelled me in the clinic so I could take Charlie and Andy to the dentist (Charlie got his first teeth cleaning and did great by the way).
We bundled the boys up in the wagon on Sunday (right before Sam started feeling really awful) and took them to the Christmas parade where Andy ran out and got all of the candy, toys, and whatever other goodies that were being given out and then distributed them to all waiting on the sidelines. He even got a Hooters card for free wings with a candy cane on it. Had he been a little older he might have appreciated the giver more than the candy cane.  Charlie was more excited about the Fire Truck that Santa rode on than Santa himself. Sam and Dad went home early because Sam’s throat was really starting to bother him. His eyes even look a little red in these pictures. He was doing better last night and running around with his brothers so I thought he was on the mend but he still feels cruddy this morning.
We got the tree and the lights up and decorated. Little by little, I’m making some progress on Christmas.  The boys are very excited. Andy sang in the Christmas program last night. He did great, he danced and belted out all of his songs perfectly. He had a little reindeer hat that was so cute. We all went to see him. Sam was supposed to sing too but still has no voice to speak of. He was a little sad but he perked up a bit when I told him that there is still the end of the year program. He asked me, “Will you come and see me in that one, Mom?” As if I would ever have something better to do.
We have scheduled radiation with a Velcade push (Velcade is chemo and a radiosensitizer) Velcade 15 minute infusion is on Friday, follow up Monday and radiation through the Christmas holidays (What are you getting for Christmas?) and into the new year.  We are hoping that will beat back the one big spot on Sam’s leg. His urine numbers from last week were pretty much unchanged 21 and 13. His LDH dropped from 890 to  690 which is good but was back up this week probably due the crud he is currently fighting.
Both Neil and I are coaching basketball. Neil is coaching Sam’s team and I’m coaching Andy’s team so it’s a little crazy around here.  Coaching the little guys is fun but I was marveling at the attention span difference between Neil’s team 8-10 and my team 5-7. Wow. Games start in January so I’ll keep you posted.
Here is the quote of the week from my mom (she’s not even here yet), “Margot, I’m writing my Christmas letter and I’m going to have to edit out about half of it. It just goes on and on and on and………”
MargotÂ
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Topics: Progress Reports | 4 Comments »
New Month, New Sport, New Holiday
By Margot | December 8, 2008
Wouldn’t it be nice if I could add to that title “New Disease”? Something relatively benign for an eight year old…”Hey we’re all finished with neuroblastoma but unfortunately Sam has developed a gambling addiction and he’s betting for extra cookies at lunch.”  Christmas is the time for wishful thinking.Â
Sorry I’ve been so slack in updating. Sam has been feeling great. He’s had a ton of energy and been in a good mood all week.  We’ve barely caught our breath from soccer season and the basketball draft was this past weekend. The boys are in different leagues now since Sam has moved up to the 8-10 league. Andy’s draft was on Friday night and he did very well – made one of his shots and was a fast racer, he raced an older girl and took the turn wide but caught up and won.  Sam’s draft was on Saturday morning and he did well too. His ball handling skills are awesome. He’s shooting on the twelve foot basket now, he can make lay up shots pretty well. Charlie came along and rooted for both. He wants to be doing whatever the boys are doing at all times. Andy is home today with a fever, though he seems to be feeling fine, his fever just spiked again, hoping it won’t last too long and that Sam and Charlie won’t catch it.  Don’t know how though. Charlie is Andy’s shadow anywhere he goes in the house. It’s very funny.  Maybe it’s because Charlie is old enough now to insert himself into all the action but both boys have become very protective of him and are really helpful with him, getting him into his pajamas, putting his shoes on and bringing them with him. I noticed it last week when we went to Legoland with Cathy and her kids. They were all on this huge wooden Legoland playground that you climb up and down go over bridges, go down slides, climb through tunnels -it’s the kind of thing that makes a mother crazy when it’s packed because you can never find your children. However, last Sunday Legoland was virtually empty and both boys helped Charlie climb up everything, waited for him on the slides and made sure that he was following them throught the tunnels. He was in heaven. I heard his little gleeful, “Come on guys” as he was running towards the slides. You would have never guessed with his height and the huge slides he was following his brother’s down that he was only two. It brought to mind our pediatrician’s warning that we are careful to treat him like a two-year old since he’s so big.  His favorite game these days is for us to find him. He hides in the same place every time and doesn’t actually come out of his hiding place after we find him, he justs sends us off to go count again and stays where he is. It’s funny. Andy, is very sweet with him and when he takes time to explain things to him. Sam comes up behind him and puts his arms around him and says “Hey Bay!” he alternates between making him laugh and laughing at him. Don’t get me wrong they both still torment him but it seems not as much so lately.
Charlie and Andy and I dropped off Sam’s urine sample at the hospital this morning for VMA/HVA this morning. Last week’s numbers were
HVA: 19.8 VMA 13.2 down from 21.5 and 18.  Better but still, ick.  I know that NB is the great masquerader, so please don’t take this as naive but Sam has wonderful energy and a great attitude and I’m tired of living from number to number so, I’m trying not to. So, if this week’s numbers are up, it will be bad news but I’m expecting them to be down just because he looks great and he’s quick with a laugh.   My Christmas present to myself is to stop freaking out over each weekly number -unless of course they jump way up and then I’m aloud to freak out.
 Christmas is zooming up fast and we still haven’t decorated or gotten our tree but that will happen this weekend. We have a radiation consult coming up, dentists, holiday show, art show, basketball practices, regular blood checks, etc. etc.  I was talking with my friend Rebecca the other day and we were talking about a slower pace of life – she used to live in Ohio- and I said, “Well isn’t it fast paced everywhere these days?”    Her reply was “Oh Honey.” Which I took to mean we live in the fast lane. Good thing our boys like fast. My mom is coming into town for Christmas so get ready for some stories.
Margot
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Topics: Progress Reports | 2 Comments »
I Am Thankful
By Margot | November 27, 2008
Pics from Palm Springs
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The boys were watching Alice in Wonderland this evening over at the Adams’s house. I didn’t have much planned for dinner and I figured that since it’s the night before Thanksgiving, I could have a pass and offer scrambled eggs, grilled cheese and soup, or something equally easy ( though tecnically I’m only bringing an appetizer to the Simpsons, I’m taking the pass anyway). I went over to the Adams to ask the boys what they would like and all three of them were so cute lined up on the couch I wanted to take a picture but was sure by the time I got back with the camera the perfect picture would gone. Anyway, I asked them what they wanted Andy and Charlie picked scrambled eggs and Sam said, “Uh, a sandwich.” Perfect I thought, then he continued, “One of those chicken, avocado and tomoto sandwiches please.” Groan. That would entail me going to Vons on the night before Thanksgiving. It will be a mob scene. I explained this to Sam and was met with a blank stare as if why would I not got to Vons to get him his chicken, avocado and tomato sandwich complete with cibiatta bread that he tried once at a fancy Italian restaurant and continually asks me to make him.   Sam is our gourmet. I could chalk it up to all those hours watching the food channel in the hospital but really he has been that way since he was born.  Grumbling to myself about catering too much to my children (Neil teases me and says “order up” when I make them all different things for a meal – I know a “no no” in every parenting book known to man), I reasoned that I should get some wine to bring to dinner tomorrow night anyway.  As I was walking in to Vons I was trying to remember the name of the type of wine that you are supposed to have at Thanksgiving. I was thinking as I walked towards the avocados that the only fact, aside from the fact that Stag’s Leap is very nice and expensive wine, that I remember from six week wine tasting class I took a long time ago with my friends Kelly and Tracy was that there is a certain type of wine that you should drink on Thanksgiving (we took the class right around Thanksgiving). I hadn’t thought about the wine tasting class in a long time and I was remembering why I didn’t remember much about the class – because after about three “tastings” Kelly and Tracy and I were pleasantly floating through the rest of the class not really noticing the subtlety of each wine as it was paired with certain cheeses and I was smiling to myself at how much fun we had taking it, how I should call Kelly because she would know about the wine, and that it seemed like so long ago that we took the class.  Then, as I reached the avocados in Vons, a thought hit me that nearly took the breath out of me. It was during that wine tasting class that I found out that I was pregnant with Sam. I remember clearly calling the teacher of the course telling her I couldn’t continue it because I was pregnant and how happy I was. She told me I could still take the course and just swish the wine in my mouth and spit it out – that’s really what you are supposed to do anyway in a wine tasting class. I remember laughing and saying I couldn’t see the point of that. It was nine years ago at around this time. It was a lifetime ago and I don’t know why that thought so nearly floored me but I almost cried in the avocados as I thought of the ride we have been on since that time. I came home from the grocery store and made his sandwich just as he liked it and the scrambled eggs for Andy and Charlie and there he came through the door, my little boy, all of eight years old followed by his two brothers all three telling me they were hungry and I was thankful. So thankful.
A week ago I had put Sam and Andy to bed and was going downstairs to get a book for Charlie. I had left the door open a bit the way they like it and I heard from the dark room Andy’s little voice, “Sam, Thanksgiving is coming up and I just want to tell you I appreciate you because you stick up for me. I appreciate my whole family, Mom and Dad and Charlie and you. That’s all we can go to bed now.”  Sam said he appreciated Andy too. It filled me upwith so much love for our little family.  Sam wrote a letter to Neil and I for Back to School night several weeks ago. I thought it would be appropriate to post it for Thanksgiving. The last line is what I cling to and think of when things get hard and I get scared.
“Dear Mom and Dad,
Thank you for taking me to all of my soccer games. Mom, thank you for letting me play all of the sports. Thank you for making me stay out of the hospital. Thank you for playing sports with me. Thank you for my Wii and Gamecube. Thank you for making us happy.”
I hope everyone has a wonderful Thanksgiving.Â
Margot
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P.S. The type of wine is Beaujolais in case you didn’t know
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Topics: Progress Reports | 4 Comments »
Good news
By Margot | November 25, 2008
Clean bone marrows and no new lesions on the MIBG. We get the final read but we think that 2 old lesions are smaller and 1 old lesion is bigger. We know for sure that Sam’s catecholamines track his disease and this reinforces that.  We also sent samples of his bone marrows to UMichigan and UVermont for the Personalized Medicine program (flow cytometry, mRNA analysis, gene expression and soon, chemosensitivity-testing) — we think the best program in NB and funded by www.magicwater.org
We’re in Palm Springs for a few nights and return tomorrow (hanging with the Brunette’s). We will meet with Sam’s oncologist then and are looking to add somatostatin (a natural hormone) and maybe change the chemo based on some clinical results seen by Dr. Sholler.
All-in-all, we’re very pleased. We would surely like a clean scan but we have experimented with a ton of things the last 9 months and have learned alot which will help as we go forward.
Please keep Sam & every other NB child in your prayers. Â
Neil.Â
Topics: Progress Reports | 6 Comments »
Untrained Eye Impression of the Scan
By Margot | November 21, 2008
Sammy was a champ today. He had his scan at 7:15 this morning because Laureen, the wonderful tech rescheduled the afternoon scan and came in early for us so Sam wouldn’t have to do a scan after a bone marrow biopsy – which turned out to be a good thing. It was hard to tell on the scan but the leg lesion definitely looked bigger. The head was clear, the left arm was clear. There might or might not be a tiny new spot on the right arm. There might or might not be something tiny on the left collarbone and there is still the spot on the sternum which has been there on previous scans and has been written off as port related, not mentioned or mentioned as possible disease. So, while the scan is not a disaster – anything really new is barely discernible, we are pretty sure we need to move on to a different therapy. We are hoping to stay relatively low toxic and we’ve got some ideas. We will have the bone marrow results tomorrow and will meet with Dr. Willert on Tuesday to put a plan in place.  Sam was great to hang out with today. We read GO LONG by Ronde and TiKi Barber, practiced his times tables, did a little science for his big test tomorrow and played Sorry. Even when he woke up in quite a bit of pain after the bone marrow aspriation he was so sweet and not very complainy about it. Kate, who did the aspiration said, when he wincingly said his pain was a “7”, “He’s not a complainer. Let’s get him some morphine.” He did get morphine and tylenol before leaving because he was really hurting.  Kate said that the left side was “very challenging and he might be sore on that side” – “challenging” is not really a word you want to hear relating to a bone marrow biopsy. Sam wanted to go out to lunch afterwards since he’d been NPO all day. He and I went to the Cheesecake Factory together and our eyes were much bigger than our stomachs but we have a lot of leftovers.
Sam’s parent teacher conference was yesterday and he’s doing pretty well. We really have to get his math scores up but we are working on that and he’s been doing much better.  Two things struck me about the meeting: First was how many people love and care about Sam at our little school -all of his aides, his hearing itenerant teacher, Diane, who was with me at the conference, and Mrs. Abbuhl his teacher add to those people who had nothing to do with the conference, Mrs. Gage from last year, Mrs. Emerson, Miss Heather, Miss Dee, and Mrs. Divacaris. Mostly, the conference was about how else they can help him out which was wonderful. We are so lucky to have such great support at school. The other thing that struck me was something on his report card that I want to frame. Not a grade but a number. The number of days Sam has missed so far this year and the number of times he has been tardy. Zero. The number is zero. If you have any idea how much school Sam has missed in the past, you will know that this is amazing. ZERO. There I said it again. I had to get it down here because it may change with a new therapy, especially if there is an IV push involved. He is home now and his back is feeling much better. He’s playing his video game (I promised) and we are going to watch Joe do a football scrimmage because we have to forego soccer practice today – though as soon as I told Sam that he said, Oh my back doesn’t hurt anymore, “Can I do soccer?” Then when I said, “no you just got morphine” he thought about it for a minute and said, “How about if I’m feeling better during Joe’s scrimmage, can I play a little football?” You know football is so much better than soccer in terms of contact sports after a bone marrow biopsy.
Andy had his parent teacher conference this week too. He’s doing really well and his teacher loves him. He’s going to start getting some harder math so he doesn’t get bored. Ironic huh? He’s been combing his hair in the mirror lately and asking if he looks handsome. It cracks me up. Yesterday he showed me how he does it. He puts water on the brush, combs it all down, and then combs it to the side all the while narrating how to do it. Then he says to me, “Mom, I’m going to open a store called the clean hairdo store. You come in with messy ugly hair and I’ll make you look handsome. Can kids open a store like that?” I told Neil that and he said, “Great, he wants to be a hairdresser.”
Charlie is making some strides in swimming. He’s talking like you wouldn’t believe. Always wants to play with “his boys.” He still talks to Elmo every time he picks up a phone and he’s dog and cat crazy. Gotta run now but will put in a Charlie quote soon.
 I’ll put official results up as soon as I get them. We are not too freaked out for some reason though, do have to change the game plan, make some halftime adjustments - whatever other sports analogy you care to throw in there to signify a new plan.Â
 Margot
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Beautiful Weekend
By Margot | November 17, 2008
.jpg.jpg "Andy school portrait (2008).jpg.jpg")
Thought you’d like to see the boys school pictures. We got them back on Friday. I thought they were pretty cute though Andy’s smile is a little forced.  We had a wonderful weekend. Friday night we took the boys down to Belmont park and Neil and Sam rode the rollercoaster (Andy is not quite tall enough so he rode a ride that shoots you up and drops you down.  All three boys rode the carousel and Charlie cried to get off saying it went to fast. They all threw baseballs to get a prize and all three boys (even Charlie) knocked the thingy down so they all picked swords. After that we went to see a USD soccer game which was fun for the boys. It’s such a nice stadium and we were able to get right up near the field. Saturday afternoon after soccer we went to the beach. The Santa Ana weather was just beautiful. The water was cold, but that didn’t stop the boys from boogie boarding. I couldn’t help but marvel at the weight Sam has gained. It used to be that he would get cold immediately upon entering any water (even if it was relatively warm). Now he has enough meat on his bones that he goes boogie boarding in November.  We dug a big hole for Charlie to play in and made a river going into it. It was low tide and we had lots of space to play, we stayed until sunset and tried to impress upon Sam and Andy how beautiful it all was. We grabbed some pizza and showers and then went back to USD this time for the football game. The boys loved it. Sam was really into every play and snuggled on my lap or Neil’s lap and put our arms around him while Charlie jumped up and down the bleachers and Andy sat on the other lap and yelled “Watch the rug!” when we were on defense -until we explained to him that people were yelling “Watch the run!”  USD is a nice small university and it’s almost like going to a high school game – it’s really family friendly.  They even had a jumpy for Charlie during halftime. Yesterday we hung out and read and played basketball outside and then went back to the beach last night to play soccer on the hard sand at low tide.  It was so pretty.  The boys both did well at soccer on Saturday.  Sammy actually scored a goal but the refs called offsides right as he shot and the goal didn’t count. It was a bummer since it was the only offsides call they made the entire game and there were plenty of other cases where it could have been called. I had to temper myself not to be crazy mother and get thrown out of the game. Sam had such a big smile on his face when he scored. Everyone high fived him.Â
He’s been in a great mood and has had so much energy lately that it’s been great to see. So much harder then to get the news late Friday afternoon that his VMA and HVA have shot up to 16.9 and 17.3. Not what we want going into scans and dangerously close to the levels where he has had bone pain. Saturday after soccer, before we went to the beach, he took a two hour nap. While he went to bed late the night before and most parents wouldn’t panic about a nap in the middle of the day, a cancer parent never likes to see their child sleep during the day. That said Sam stayed up the latest Saturday night – didn’t seem a bit tired long after we were home from the game and his brothers were sound asleep so maybe it was just catch up sleep. We talked to Dr. Sholler on Friday night and have changed some of pills he’s taking.  We will of course know more on Thursday but we are terrified and determined at the same time.  Neil and I are trying not to give in to the terror and go out and live life with our little boys. Neil got us up and out for the fun activities of this weekend and I’m so glad he did. I tried to just watch and enjoy Sam (and all three boys) - as he threw his head back and laughed at his brothers at the beach, as he told us about what happens to stars “when they are finished” and how he wanted to stay to the very end of both games (football and soccer) though it was obvious in both cases what the outcome would be. Â
Please think good thoughts for Sam and say some prayers for him on Thursday.  He will be at the hospital all day for a bone marrow biopsy in the morning and his scan in the afternoon.
MargotÂ
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Thank You Bev!
By Margot | November 13, 2008
Bev Browning, the author of GrantWriting for Dummies and a family friend was in town last week to give a Grantwriting Bootcamp at The San Diego Foundation. Bev, it was wonderful to finally meet you after all these years of working with you. I was only able to stay for part of the bootcamp but next time will arrange to stay for the whole two days. Bev is fantastic.  She generously donated a portion of her proceeds from the bootcamp to MagicWater and had me give a little talk about who we are and what we do to her bootcamp students. Here is a link to her website with a picture of she and I after she handed me a check for $1297:   www.grantwritingbootcamp.usÂ
THANK YOU, BEV!  You are a wonderful support.
MargotÂ
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