New Pics from Deb/Boys
By Margot | May 27, 2008
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We took pics at Balboa Park Sunday with Deb. She was great as usual. Charlie was determined not to smile much for some reason but she caught him in a couple of pics.Â
We had a nice long weekend. We went to SeaWorld with the O’Kanes on Saturday, and the boys had a great time. Sam’s tummy was hurting toward the end of the day but they got to see some shows (Pets Rule is their favorite, it plays the song “Who Let the Dogs Out” and it’s really funny to watch all three boys sing and dance to it) and go on the helicopter “ride.” We went for a bike ride yesterday around the bay. Sam’s legs got tired soon after we started and I was worried. Neil had dropped us off with all of the bikes (I won’t go into the logistics of getting all the bikes and all three kids down to the bay but it’s involved) and then he got lunch and met us at Fanuel park with the car. Well, we had to stop and rest several times because Sam was getting tired. I was worried we wouldn’t make it to the park but he made it. The boys played chase at the park after the picnic and Sam ran around just fine. As Neil was putting his bike in the car, he said, “Sam has a totally flat tire.” We’d filled up all of the tires before we left but Sam’s bike must have had a fast leak.  Nice observant mother. My son on chemo rode around the bay with a totally flat tire.  Nice. The boys saw the new Narnia movie with Mimi and her dad on Sunday afternoon and they thought it was a great movie and yesterday afternoon I took them to Speed Racer. Fine fine film making. Sam laughed at all of the jokes where the little brother hides out in Speed Racer’s car and Andy took it very seriously and yelled “Go Speed Racer Go. ” several times during the movie.  They both can’t wait for the next Speed Racer movie to come out. I suppose if I had girls I would be watching Hannah Montana movies. I probably wouldn’t be able to chase the trash truck all the way down the alley as Andy and Charlie and I did this morning though.  We do it every trash day and the guy waves at us.
Sam is hit and miss with eating. When his stomach isn’t hurting, he’s eating well.  Zofran helps and we are talking with Jayne at the hospital about a couple of other meds to help out with nausea. We have a CT scan and blood check tomorrow. Hoping for no nasty surprises with the CT scan. Just because we don’t have enough doctors appointments and we needed something else to fill up our time, we’ve started the process of signing Sam up for vision therapy. Our friend Johnny was over for a playdate a few weeks ago and Nancy was telling me about Johnny’s vision therapy.  She started explaining why they started it, he was reading “saw” for “was” and vice-versa, his eyes were getting tired after a couple of pages, he was losing his place a lot, etc. etc.  As she was talking, it dawned on me that Sam did all of the same things when he reads. He’s doing fine in school and this year he has caught up almost totally with the kids in his class but his reading is slow and still not quite up to par. I thought it was just a matter of time since he missed so much school.  It turns out that instead of just time, he needs vision therapy. We went to a free screening at the place that Johnny goes for therapy and Sam scored “at risk” in eye teaming, eye movements, visual form reproduction and right/left and number reversal. As they were giving us the results of both boys tests (Andrew’s was perfect) and she said Sam is “at risk” I thought it was a funny choice of words and felt like saying, “Lady you have no idea.” So, something to do for the summer, we’re trying to get it set up quickly. The good news is that she said once kids start vision therapy, their reading and schoolwork in general sky rockets (don’t know if I can use sky rockets as a verb). Mostly I just don’t want Sam to struggle, he has enough to struggle with (a mother who let’s him ride a bike with a flat tire, for instance) and reading need not be part of it.  Also, with hearing loss, reading is obviously essential.
That’s all for today’s update. Thanks a million to Deb who spent her Sunday morning with us. Will post after the CT scan.
MargotÂ
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Topics: Progress Reports | 6 Comments »
Dr. Sholler/Sam/Max/Deb
By Margot | May 23, 2008
Thought you all might like to see this news report on Dr. Sholler and some of the kids she’s treating….
http://www.wcax.com/Global/category.asp?C=18830
We are on our second day off from chemo and Sam was feeling good this morning. He threw up on Wednesday night and his protective little brother looked at me accusatorily and said, “those new pills you are giving Sam are making him throw up, Mom, so you need to stop giving him those, Ok?”  We were in the car on the way to basketball last week with Joe and Jake and Sam was telling me not to hit the red lights because he needed to get out of the car quickly so he didn’t get sick and Andy said proudly to Joe and Jake, “Mine brother’s thown up like a million times. “ That’s Andy’s normal. Sam hardly talks about it and just wanted to get to basketball.  Pat Lacey’s blog yesterday “Grooming a Pill Popper” talking about the Cancer Kid Olympics made me think of that moment last week:  http://www.willlacey.com  Yesterday, Sam’s stomach felt rotten (heard this from Mrs. Gage, not Sam)  but he rallied in the afternoon and seemed to feel much better when I picked him up from school.  We start again tomorrow morning for five days and then have a week off. The boys have basketball tonight and Sam’s friend Nicholas is coming over for a play date. Andy has Matthew’s birthday party this afternoon which he’s been looking forward to for weeks. Charlie is going to come to everything because he is not to be left out. As soon as anyone opens the door (even if it’s just to take out the trash) he shouts “I coming!”
Our friend Deb Schwedhelm is photographing Max’s journey as he fights NB. She and the Mikulaks have put up a new site with a blog and Deb’s amazing photographs. Before I give you the link, I must say a few words about Deb. She is the most kind generous person you will ever meet. Her beautiful daughter Kiele has a cochlear implant and I met her through our hearing specialist at school. She’s also good friends with Mrs. Gage. Our hearing specialist first told me about her this way, “if you want to know how to be an advocate for Sam in the hearing department, you need to talk to Deb Schwedhelm. She is amazing and has done so much for her daughter.” Deb paved the way for Sam to have an FM system, an aide in class, and all sorts of support. Her pictures speak for themselves but she is just magic with the kids. We’ve been to two sessions with her where the whole family was cranky and Sam was frankly a mess - crying, uncooperative and determined not to have pictures taken of him. Deb somehow managed to not only get him to smile, but to capture some of our favorite pictures of him ever taken. Max, well I don’t have to say much about Max to most of you who follow our site. He is a great, kind, happy kid whose enthusiasm is contagious.  You should really check out the new site: http://mashedpotatoesforbreakfast.blogspot.com/
There. Have I given you enough homework for one day?
Margot
Topics: Progress Reports | 2 Comments »
Spencer Dolling
By Margot | May 22, 2008
Spencer Dolling died in the early morning yesterday. He was an amazing boy from an amazing family. His father’s posts inspired many families, made us laugh, and reminded me many times when I need a reminder that we can add fun and laughter while we live through this. I’ve never met Spencer but I felt like I knew him through his website and he will be missed by many. http://www.caringbridge.org/canada/spencer/
Margot
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So Far Very Good
By Margot | May 20, 2008
Sam is at school today and went to school all day yesterday. He’s tolerating the new chemo without a problem. Aside from some nausea which seems to be controlled by zofran, he’s acting just as well as he did before last week. It’s almost as if last week was an awful dream (I wish). The best news of all is that his arm pain is gone. He hasn’t asked for a pain pill for two days and says his arm doesn’t hurt anymore. I can’t believe it would work that fast but dear Donna Ludwinski let me know that it worked that fast for Eric as well. Now if we can keep his counts up, we’ll be in good shape. We’ll keep checking VMA/HVA weekly. I love chemo! Ha Ha. I love it today anyway. Neil and I laughed (sarcastically) that the pharmacy included gloves with the irino. Here are some gloves so that you don’t touch any of the stuff that you are pumping into your son every day. I’ll never forget the first time Sam got chemo right after he was diagnosed. It was very heavy duty stuff and the nurse came in with a gown, gloves a mask and handled it as if it were a grenade. It was very comforting knowing it was about to be pumped into my four year-old. We are scheduling a head and abdominal CT for next Wednesday, there were some suspicious areas on the skull and abdomen and we want to know what we are dealing wtih in terms of disease.
For now though, Sam is doing very well. Instead of counting my chickens before they hatched last week, I was counting on disasters before they occured and imaging all the worst going forward. For all my big talk about living in the moment, I was doing exactly the opposite. I think it was the fact that Sam was in pain and I couldn’t do much about it. This disease makes it hard to be optimistic but I have learned my lesson and have hereby denounced pessimism. Feel free to help me with this plan.Â
Speaking of chickens, we brought home Fluffles and Peep last night, the baby chicks that hatched in Mrs. Gage’s class. The boys were so excited, we let them walk around on the back patio and Sam and Andy held them while Charlie pet them gently. There was an unfortunate chick crushing occurance in last year’s class by a baby brother of one of the kids so needless to say, I was a bit nervous.  The boys were very gentle though and so happy to have them. Sammy said this morning, “Thanks for letting me take the chicks home last night, Mom.” I was almost inspired to go out and buy some chicks so we can become the crazy chicken family- not sure it would go over with the neighbors though.Â
HVA:Â from last week (before new chemo) 26 down from the previous week’s 27
VMA: 13. 1 down from 14. 6
Thank you to all of you for the kind comments, emails, prayers and good thoughts. They have been working.
Margot
Topics: Progress Reports | 9 Comments »
Drugged Up and Back in the Game
By Margot | May 17, 2008
Sam started new chemo this morning. Thanks to Neil’s major efforts yesterday and Jayne and Dr. Willert’s prompt responses we were able to get a prescription filled yesterday afternoon. One day is pretty amazing response time for something like this. We will be fighting with the insurance company but wanted to get started right away. Sam is swallowing down $200 each pill.  We chose irino/temodar. He can take it orally and many kids have had a good response to it. He swallowed down all of the pills this morining without a problem. Thanks to Aimee Jackson who let me know that we can put irino in capsule so that it goes more easily and thanks to John London for having the bright idea in the first place. We will be watching his urine numbers like hawks and be ready to change course quickly if things aren’t going in the right direction. We have learned that the VMA/HVA are Sam’s markers. LDH has stayed relatively normal so, not such a good marker. It’s a relief to have a plan in place and already have started treatment. Radiation should happen some time next week.
I explained to Sam that the cancer cells have come back and that is what is making his arm hurt. He said, “The cancer’s not all gone yet?” I told him we have to do some new medicine and that we might have to be in the hospital during the day to get it (before we’d decided on what we were doing). He said, “I’m ok with that, but I don’t want to stay over night.”
 Between zofran for his nausea and Vicodin for his arm pain we seem to have things under control pain-wise and Sam has been feeling fine. He takes from two to three Vicodin a day. He didn’t wake up asking for a pain pill this morning but then Andrew, while doing a headstand on the couch accidentally fell over and kicked Sam in the arm and poor Sam cried like he’d been hit with a sledge hammer.  He missed school all week but after feeling rotten yesterday morning, he was back to his old self yesterday afternoon. The Monaco boys came over and went swimming with us and then Sam took a Vicodin and said he wanted to go to basketball. He made it through the whole hour with a smile on his face and then played tag at the park outside the rec. afterwards. No one would have had any idea.  I laughed that he wasn’t up for school but of course was up for basketball.  The main side effect of irrino/temo is diarrhea and some nausea. Hopefully if we can keep that under control, he can go to school and do all of his regular stuff.  I’m knocking every piece of wood for that, oh and that it actually works would be nice too. Please say some prayers and thinks good thoughts for our little boy.  He’s a fighter. He seems to be feeling good today (three hours after chemo pills).Â
Thanks to evereyone for all of the kind emails and comments. I’m sorry I haven’t had a chance to answer them all but they mean the world to us. Â
MargotÂ
Topics: Progress Reports | 21 Comments »
Bad News
By Margot | May 15, 2008
I am muddled so this may not make much sense. Sam woke up Monday night with arm pain in his upper left arm. One dose of Tylenol didn’t do the trick and he only went back to sleep after a second dose and a lot of holding his arm in pain. I knew it was disease, there was just no rationalizing anything else. Tuesday he was ok all day but again at night needed two doses of Tylenol before bed. Wednesday he woke up asking for Tylenol and has been asking for it frequently ever since.  This morning’s double dose before the scan did nothing to help the pain so on my way to the scan I stopped Dr. Kim in the hall and told her that I thought we would need something stronger to get him through the scan, she doubled back with us to the clinic and Jess went to work on getting us some Vicodin. Neil met us right about the time I completely fell apart and ran out sobbing into the hall.  I just knew the scan was going to be bad. Neil carried Sammy to the scan while I pulled myself together and I met them in Nuc. Med.  There is a spot on his arm – no surprise, two spots on his right leg and a spot on his left leg (or vice versa). We thought we might have seen uptake in the skull but the wet read from Dr. Harvey was that the skull was clear. He thought that the spots were the same very vague possible spots that were on the last scan but that the last scan was tough to read because the machine broke half way through and the 48 hour read differed from the 24 hour read - but in looking back to the October scan there is no doubt that we have progressed from there – perhaps not much since the last scan -but then we thought there wasn’t any progression in the last scan. Are you confused? Me too. We should have a final read tomorrow.  We are starting radiation next week and need to come up with a plan. The low dose of Vicodin that we got at the hospital didn’t help much for Sam’s arm pain so Dr. Willert upped the dose and he is feeling better now. He threw up this morning and on the way home from the hospital.  Ugh.
I’ll post when we have a plan.  Our friend Erin Buenger progressed this week also – this damn damn disease. (Erin’s mother actually coined the term “scanxiety” -well warranted this week).  So much for my caveat.
 Will post as I have more details.
 MargotÂ
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Topics: Progress Reports | 14 Comments »
Happy Day After Mother’s Day/Scanxiety
By Margot | May 12, 2008
Pics: Charlie driving his girl (Ava) nice chocolate face – who is his mother?
Sammy holding Charlie on, and Andrew and Andrew driving the crew = troubleÂ
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We had a wonderful Mother’s Day weekend. We went up to Irvine for Andrew Castillo’s birthday party. They had a reptile/bug birthday guy come and the boys got to touch and hold huge lizards, a tarantula, a scorpion, snakes -including an enormous python that all the kids had to hold together because he was so huge. Sam held all of them, Andy touched them all but didn’t want to hold them and Charlie “pet them” while I held them. Dad was conveniently filming it all. I hate to say Neil is more squeamish than I am about all that stuff but, Neil is more squemish than I am. After the party we all went swimming and then played at Cathy’s house. She has a great neighborhood for the kids to go outside and run around. Pics are from them driving Andrew C’s tractor.
Yesterday was wonderful, the boys each made me a card that almost had me in tears, they were so sweet and Neil got me roses. We took the boys to the new Children’s Museum that opened downtown and they had a ball. At one point I was out on the deck blowing bubbles with Charlie and making him laugh and I looked back inside where Sam and Andy were racing wooden cars they had made down the track. I saw their two little red heads pop up smiling at the same time where they stepped up to let their cars go down and I watched them enthusiastically race them down and run to get them with Dad who was waiting at the end of the track and I felt so lucky. Â
Wednesday is the injection for the scan and Thursday is the MIBG scan. I would be very confident (oh really who am I kidding - we always freak out) because Sam has been feeling so great and in good spirits but since his numbers have been going berserk, it’s not so good.  There always seems to be a caveat with the numbers and this one’s actually pretty convincing: Sam has been taking curcumin because there has been some wonderful research by a doctor at MD Anderson showing that curcumin (which has no toxicity) has a very strong anti-tumor effect. There has been good research in NB cells as well.  Curcumin also effects dopamine and seratonin and has been used in some studies as an anti-depressant. When we get back the VMA/HVA is says (and I’m paraphrasing here) that barring a dopamine injection the high numbers could be caused by NB tumors.  Now, does curcumin create the same effects as a dopamine injection – I don’t know. But the numbers do correlate to when he started taking it. So, there is my ray of hope for the week.  If I didn’t have that ray, I think I would be out of my mind because I really can’t remember when Sam’s HVA has been this high (diagnosis probably). So, there you have it. Scan is Thursday at 2:30pm.
Happy Belated Mother’s Day to mom’s everywhere, and our hearts go out to those of you who undoubtedly had a tough one.
MargotÂ
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Topics: Progress Reports | 4 Comments »
Running Again
By Margot | May 7, 2008
Sam is fully running again and if you know seven year old boys, you know that it makes Sam very happy.   I pick him up from school each day and he has a huge grin on his face. Yesterday he said he had a great day. He got a 90% on his math test and Natalie couldn’t catch him at recess. We have the week off from the hospital so we are scheduling some play dates for after school. Today he will have Nate over and tomorrow Joe is coming over. Monday he’s going bike riding with Johnny. Yesterday Kate Sessions kicked off Coins for a Cure. The student council did a little skit at the morning assembly. The Monacos and I had rewritten it some so as not to scare the kids but in the end it went off without a hitch.  Sam brought in Neil’s big canister of coins today and was very happy to be contributing. Mrs. Gage is hatching chicks again in the incubator this year and the kids are so excited that one of the eggs is about to hatch. Last year the boys named the boy chick “Darth Chickey, ” I’ll let you know what this year’s chick names are when they hatch.
Andy is doing well. His art show was great. He’s really a good little artist and his teachers have worked with the kids on some amazing projects. Andy flew through his kindergarten assesment last week and can’t wait to get started, though I know he’ll miss seeing his preschool buddies every day.  He’s been having playdates galore as usual and he and Sammy have been playing a lot together. This past weekend, aside from Brendon’s birthday party at Pump it Up, we just had a low key weekend which was a nice breather for Neil and I.  The boys and I played some tennis and basketball and we all painted on the easel Grandma Joan gave us on the back patio. If you can imagine all three boys and Mimi in the midst of several different colors of paint on the back patio, you can imagine that it was a messy endeavor. Charlie mostly just liked sticking his hands in the paint water and splashing it everywhere.
Charlie is still very cute and funny and holds major conversations now adays. He can sing all of Twinkle Twinkle Little Star, though it’s not all intelligible.Â
Basketball season starts in early June again and the boys are taking a skills class every Friday night. They love it, though Sam is itching to start soccer.  He played last night with Neil and he’s getting some moves back.
I am working on my zen mastery ;-) and living in the moment. Neil is working on many different things at once as usual and has some great things happening on the lab front. Hopeful things.
I’m going to end today with numbers. I picked them up from the hospital this morning when I dropped off the urine sample.  This is really against my zen/ABC principles but I know there are those of you (Meryl ;-)) who are sticklers:
last week’s LDH: 621 (think I posted that last week)
D-Dimer: 509
Vitamin D 59
VMA: 14.3Â HVA 22.2Â (ugly)
Fibrinogen: 245
Thrombin Antithrombin: 40.1
We’ll get the VMA/HVA numbers back from the sample I dropped off this morning before the scan next week. Hopefully they’ll have dropped from this week.  Going into a scan with our current VMA/HVA is sort of like going into the championship game with your money players hurt.
This weekend is Andrew Castillo’s birthday party up in Irvine (boys can’t wait to see the Castillo kids)Â and from there on out, May is packed.
Margot
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Topics: Progress Reports | 2 Comments »
Kiss Your Kids Today
By Margot | May 1, 2008
Max and his parents could use some support and kind words today. Please stop by their website: http://www.mikulak.blogspot.com and offer some support if you haven’t already.
This is why we need to keep raising money. MagicWater has no agenda but to save our kids and get money into the hands of people who we think have the best therapies available.
Sam’s LDH yesterday was 621 (down and normal) VMA 12 (down a bit) HVA 19 (up a bit). I’m am working very hard on focusing on today and not driving myself crazy over numbers. The LDH is great the HVA is too high. We have a scan in two weeks and Sam is feeling very well today.
We went to the beach last weekend and the zoo.  Poor Charlie hasn’t seen as much of the zoo as the other boys had. He loved it. The monkeys were his favorite of course and he loved as Neil said “The Native American Diesel Tour Bus.” I thought of you, Colleen Kuhn, every time he said, “Ooooh Buuus!” We have been getting outside as much as possible now that it’s staying lighter later. The boys and I have been making up new basketball games after they get bored of Horse and Around the World. Last night Andy made up a game called “hoop” where you chase the person with the ball to tag him, then you have to count to five and if he says hoop before you get to five he can make a basket and win. If you follow the rules carefully it’s pretty easy to win because you just keep saying “hoop” all the time. As I put Sam and Andy to bed last night I kept hearing them giggling in their room after the lights were out — it’s a sound I could listen to forever.
Austin Melgar died on April 25th. He is remembered here:http://www.lifestorynet.com/memories/35620/ Please say some prayers and think good thoughts for his family during this difficult time. He was an amazing little boy.
Margot
Topics: Progress Reports | 2 Comments »
ABC
By Margot | April 23, 2008
Last Friday after the MagicWater meeting Melissa Mikulak set up a surfing lesson for herself, me, Dr. Sholler and Melissa Kipp, our awesome volunteer project manager from Boston. Not only did we have a perfectly beautiful Southern California day with dolphins swimming and jumping right off the shore, but we also had Michael Willis, one of the famous Willis brothers http://www.wbsurfing.com/ as our instructor. It was like get a surfing lesson from (as the Mikulaks said) Spicolli or, if you need a more recent movie reference, he reminded me of Chicken Joe from Surf’s Up. He was a fantastic instructor and if there is a more authentic California Surfer Dude, I don’t who it would be.  He gave us all safety tips before we started. Here is what I learned (aside from the fact that I “have Willis Brother hair”):  Do the stingray shuffle in the sand- meaning shuffle your feet so you don’t step on a stingray. If you get caught in a rip current, you don’t swim sideways like the “dummyguards” teach you, you swim to the nearest wave and let it take you in. If you swim sideways, you may either have to swim a very long way or just end up getting cycled back into the rip current.  Never put anything between you and the wave – meaning your surfboard (or anything else) will clobber you if a wave comes along and smashes it into you, so don’t put it in front of you. If you fall off, fall back, not forward. If you do fall off, don’t panic and don’t pop up right away, just cover your head (so you don’t get clobbered by your surfboard, wait a bit for the next wave to pass by and “you’ll come up, you will.” That led us to the last and most important safety tip ABC: Always be cool, calm and collected. His example for this one was “If your house is on fire, what do you do? You don’t panic. You, (he take a big breath and shakes his hands out) take a breath and then, (pointing a finger) OK priorities.” I’m not describing it very well, you really had to be there. Â
Extrapolating the ABC line of thinking to cancer, I did not post last week’s numbers so as not to scare the *(**&! out of people. And, they were back down this week. See how I’m not giving you specific numbers? I’m forcing you to ABC this week too. Sam is doing well, feeling fine, having fun at school, and shooting a lot of hoops lately with Andy. His school had a jogathon this morning and I went to make sure he was holding up ok.  He really wanted to run but he got to tally everyone’s laps and spray them in the face with a water sprayer as they ran by and he was happy with that. He made me a card in his reading class today – made my day. It said “A Card for Someone Special” and he wrote “Mom,” and he drew a picture of us together and then his sentence about why I am special was “You halp me all the time.”   Andy is doing fine, his preschool is having an art show in a couple of weeks and his teachers say that he has done some amazing art so we’re looking forward to seeing it.  He can’t wait for kindergarten and Sam is very excited to have him in the same school. He was telling me at the jogathon today that next year he and Andy can run together.  Charlie can say “elephant”, “bird” and basically will repeat anything you ask him to repeat now. He loves to read CURIOUS GEORGE RIDES A BIKE. That’s the only book he’ll read lately. In fact, if you offer him another he’ll bat it away and say “ooh ooh aahh ahh” – his word for monkey. His affection does not extend to any of the other Curious George books though – only the one about the bike. He can say both Sim and Annee pretty well for the boys names and he has a great sense of humor.
We did meet with Dr. Willert last week and the official read from Dr. Harvey on the March MIBG scan was that it looked the same as the previous one to him and that the first guy “overcalled” it.  Huh. So, good news for us. We’ll do another scan on May 15th to keep an eye on things. The MagicWater meeting went well – there is a lot research underway and soon to be underway. It was great for me to finally get to meet Dr. Sholler and Pat Lacey.Â
Thanks to everyone for the comments and emails. I’ll promise to post more specifics next week. Â
“Live every day like it’s the last day of summer.” That’s a surfer line for any of you who were wondering.
MargotÂ
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Topics: Progress Reports | 3 Comments »