A Few Pics
By Margot | April 15, 2008
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Here are some pics from our trip. Will do a full update soon. The Magic Water meeting is on Thursday. We meet with Dr. Willert on Wednesday to discuss a plan, rising numbers and the final read from Dr. Harvey on the March MIBG.
Yesterday was the Legoland field trip and the boys had a great time.  Palm Springs was a lot of fun. We squeezed in swimmiing, golfing, bowling, movie, tram, and Soak City.  Details in the next post. Today was crazy hair day at school for Sam. I’ll be sure to get a pic.  We sprayed Sam’s hair red, green and blue – his three favorite colors.Â
MargotÂ
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Off for Some Fun in the Sun/Numbers
By Margot | April 10, 2008
Sam is looking and seems to be feeling as well as he has in a long time. His ankles are getting much better, he has no pain at all and people keep telling us how great he looks. The nurses when we walked in for the blood check yesterday said he looked fantastic. He’s got a little bit of a head cold that is going around and we are all starting to come down with it. He had a low grade fever for a few days that panicked us until I found out that Jake had one and Andrew had one and it seems to go with the head cold.  His ANC/Platelets/Red Blood Cells are that of a normal kids. The VMA/HVA are trending higher. Yesterday we got the results from last week. VMA 10 HVA 15. These are both high and worrisome. LDH was 769 also high. That could be due to the head cold, or not. So what do we do with this information aside from wake up in the middle of the night with a sick feeling and walk around feeling like the king size mattress that Pat talks about has just been rained on?  We are working on a plan. We’d like to get yesterday’s VMA/HVA back (probably next week some time) just to be sure that things won’t bounce around. The only way they’ve been bouncing lately is up. We are setting up another scan for mid-May – 14th and 15th.
In the meantime, we are going to Palm Springs for a long weekend. Thanks to Cathy and Nancy for hooking us up. The kids are very excited and it should be good swimming weather. Monday is Sam’s Legoland fieldtrip and he’s been talking about it for weeks now. I’m driving and Andy is coming along.Â
Kate Sessions Elementary is going to do “Coins for a Cure” again this May and the money will go to MagicWater for research. Mrs. Divicaris is awesome. She’s going to make it very general so Sam doesn’t feel so spotlighted. If you don’t know, Sam is not a spotlight kind of guy and doesn’t like a lot of attention aimed in his direction. He enthusiastically brought in all his coins last year though and I know he’ll love to be a part of things – just not the main part of things. He’s loving school. I picked him up early today for our vacation and I had to finish a bit of packing and he said, “Why didn’t you just leave me at school?”
More soon.
Margot
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MagicWater
By Margot | April 8, 2008
Thought you all might like to see the press release on what MagicWater has funded so far this year: http://www.prweb.com/releases/2008/04/prweb829254.htm Â
Pretty amazing. Neil, Andy, Pat, Meryl and Dr. Sholler have moved mountains in a short period of time.  Thanks to all who have helped and are helping make it happen. We have many miles to go….
MargotÂ
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Unslumping
By Margot | April 2, 2008
I have been in a Slump -the particular kind that Dr. Seuss refers to in his book OH THE PLACES YOU WILL GO: “And when your in a Slump you’re not in for much fun, Un-slumping yourself is not easily done”… “You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed I fear, toward a most useless place. The Waiting Place…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting.”
I feel like I’ve been waiting for the past two weeks but I’m not exactly sure what I’m waiting for. I was waiting for the radioligy report and then when we got it, I was waiting to hear from Dr. Harvey, the head of radioligy for his read on the radioligy report (don’t have that yet), then was waiting for the VMA/HVA numbers from last week: VMA 9.2 HVA 13.6 (more on that later). I was waiting for the LDH 706 and now I’m waiting for tomorrow’s blood numbers. I’ve been compulsively checking the Mikulak’s site and several of the other kiddos site’s waiting for their news and hanging on their every post. It has worn me out. I guess I’m really just waiting for someone to call or email or give me some numbers that essentially say “Sam is fine, don’t worry. Max is going to be fine and Austin is going to wake up and be fine and someone has found a cure that doesn’t have any side effects and all of the kids with cancer will be fine.”  How long must I wait for that?  Dr. Suess says, “No that’s not for you! Somehow you’ll escape all that waiting and staying. You’ll find the bright places where Boom Bands are playing.”  The one place where the Boom Bands are playing is with the boys. They are a Boom Band in themselves and keep me going.  Sometimes the band is out of tune and I’m the cranky director yelling yelling yelling but even then it’s never dull.
Sam is with Andy at school today. He had a half day and both boys have been plotting for him to go to school with Andy since Andy got to stay at school with Sam a month or so ago. I made Sam’s blood check for tomorrow instead of today so he could go with Andy. Andy’s teachers are very cool. I’m looking forward to getting the report on how it went.    Sam’s been feeling good and been very active. We went on a bike ride to the beach this past weekend and he spent all day at the park on Saturday. He’s still limping some, we’re going to Palm Springs for some swimming in a couple of weeks so I’m hoping that may be good physical therapy for him (at least it’ll be good mental therapy for all of us).  He asked me last week if I told Mrs. Emerson he’s not supposed to run for a while and I said yes and he said, “Oh, I think she forgot today in PE because I forgot (yeah right) during PE and I ran and she didn’t say anything.”  The higher numbers are worrisome of course and Neil and I are talking about a plan. We are looking to add some things to his regimen. I’ll keep you posted on that front we haven’t come to any major conclusions but are changing some things on the pill front.
Andy is doing fine. we’ve been playing Star Wars a lot (he watched the movies on the way to Arizona). It goes something like this. Andy wielding his light saber: “I loved you Annikin.” Me: “I loved you too Princess Amadala.” Andy: “Mom! I’M NOT PRINCESS AMADALA! Hello? I have a light saber here. I’m a boy! I’m Obi Won (sp). Me: “Oh oops. Sorry about that.” Andy: Ok, let’s try it again. I say “I loved you Annikin” and you say, “This is the end of you my master and then we fight and then you fall into the hot lava.”  I’m filling out the paperwork for his kindergarten registration for next year. I can’t believe it. It’s funny to fill out the paperwork now because when it asks me about “Your Child’s Strengths” I go on an on. Never ask a cancer mother about any of her children’s stregnths. I can just see the teachers rolling their eyes, “Ok who wants to deal with this one?”
Charlie boy is sweet and funny. He’s talking whole sentences now and loves to say “Mom Wa (watch)” and then he jumps off something or throws something or scribbles all over something. He’s very big into drawing but only wants to use blue for some reason. Joe and Jake were over on Monday afternoon and Charlie ran around after the boys in absolute heaven. He feels that he is totally in the mix even though he has no idea what’s actually going on. No one’s let him in the fact that he’s not actually five or seven years old yet.
I’m working on un-slumping. Even amidst all of this heartache as Dr. Seuss says, “There is fun to done.”
Margot
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So…
By Margot | March 28, 2008
I’m very sorry to have left everyone hanging. I was waiting to hear something official from the head of radioligy. Dr. Willert had said she’d call him. She’s out of town this week so we may not hear his read until next week. Dr. Sholler read the scans and said she only saw the spot above the port and that it’s probably line related but we should go with San Diego’s read on it as they might have a clearer picture. The San Diego read didn’t even mention that spot at all so I’m guessing the guy who read the scan thought it was line related. In the SD report he mentioned uptake in both distal femurs at the same spot. This could very well be growth plates because though it’s not out of the question that it would be in both legs at the same spot, it’s a little odd. He also mentioned a spot on the arm that was only visible on the 48 hour scan and not the 24 hour scan – we didn’t see it and I’m not sure why it would show the second day and not the first. However, that did not stop me from wondering about it in the wee small hours of the morning.  Under reference scan it said “none” meaning he didn’t reference our previous MIBG scan (usually helpful) or the MRI we took of the growth plates last week. Anyway, Dr. Willert said the person who read the scan is not really a nuc. med guy (that’s a pretty good idea I think – to have someone who is not really a nuc med guy read our nuc. med scan)  and that she’ll call Dr. Harvey for clarification. So, there we are. We think we are in good shape but would like to hear that from Dr. Harvey himself. We’ve started Sam on Vitamin CK3 this week. Sorry for the sarcasm. I promised myself I wouldn’t vent.
Sam and Andy and Charlie are all doing well. Sammy is at school and Andy is on a play date. Neil is in Atlanta today meeting with Dr. Durden and Dr. Sholler to talk about research. I’ll do a more thorough update soon. Please think good thoughts for our friends the Mikulaks today http://www.mikulak.blogspot.com
MargotÂ
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Cast Free!
By Margot | March 25, 2008
Sammy got his casts off yesterday and he was the happiest boy alive. All day he was waiting for his 3pm appointment and had told his teacher and his whole class that he might get his casts off. I was so hoping he would because I knew he would be crushed if they had to stay on. I was trying to prepare him for bad news just in case but Dr. Chambers showed us the x-rays and they were beautiful. I hadn’t realized how bad the previous x-rays were with all of the bones just sort of floating around in there until I looked at the contrast between the January x-rays and yesterday’s nicely fused bones and almost normal growth plates. Sam is in “air casts” and needs to not run for a while but he can swim. On the way home in the car he said, “Mom, do you know why we are hitting all green lights? Because I got my casts off today and it’s a lucky day.”  He called Joe on my cell phone to tell him. 2nd graders on the phone together are very funny. Joe wanted to know exactly what he can and can’t do now and he explained it all to Sam’s class as I dropped him off this morning. The whole class was so happy for Sam. Mrs. Gage said it must have been all the good thoughts they were sending his way yesterday. Sam wanted to call her right after he called Joe.Â
I was going to pick up the VMA/HVA numbers from last week while we were at the hospital but we were all so happy, Neil I just figured we’d leave it alone until Wednesday.  The full body scan on Saturday was much more comforting, we had a vistiing tech that works for the Navy who comes in on Saturdays. She pulled up the static scans from Friday and gave us every different view and contrast on both the full body and the static. His legs looks beautiful in the starker contrasts and we think, we hope, we saw a little bit of a connection between the port spot and the spot on his upper chest which might mean it’s his line. This is a big guess here and we could be totally wrong and get the report saying it’s disease. She did a lateral static scan for us and it is right under the skin, could be bone, could be line. It’s not visible from the rear so it’s most-likely not the spine. So, we took that news and had a hopeful and happy Easter.
Grandpa helped the Easter bunny put together the annual treasure hunt for the Easter baskets. The boys woke up very early and found the first egg with a map by their bedside. They were so excited they came right into our room with big grins on their faces and said to me, “You need to get up right now.” “We found the first egg.” They raced from egg to egg after reading the maps and clues. I marvel every year at the fact that they never even question the Easter Bunny’s artisitic ability ;-). They were overjoyed when they got to their Easter baskets and dove into the chocolate and toys. Andy was munching away on his chocolate bunny when he said to me, “The Easter Bunny is really nice to people.” Charlie could have slept in a little more and was pretty much dazed through the whole hunt but was happy to see the mini-football in his basket and got a big smile and said “fooball.” He’s talking up a storm now and is quite a parrot. The funniest is when (thanks to Sam and Andy) he calls people “Dude.” Someone will walk out the door and he’ll say, “Bye Dude.” We all went over to Colleen’s for an awesome Easter brunch and the boys and Arielle played all day and had another easter egg hunt there.
We had the whole crew in for the scan on Saturday. Grandpa came along to help with the little guys. Neil and I were a bit nervous to have anyone else in the room as it’s always just been the two of us but Sam wanted Andrew to watch the movie with him and I came in an out with Charlie and it worked out fine. Actually it was sort of a happy atmosphere vs. the usual dread filled room. Andrew was so sweet to his brother. He asked him, “Are you scared, Sam?” as he was being lifted up in the air by the table and Sam said, “Nah.” When they were watching the movie he kept making sure Sammy could see and was careful to not to touch anything. His best quote was, “Dad why are we taking a picture of his chest? His ankles are broken.” His kindnes really hit home to me because when we walked into the hallway where we always wait for our MIBG scan (we never wait in the germy germy waiting room) armed with the hotwheels cars we always race along the long smooth benches that run along the wall and the boys were laughing and yelling and wrestling over cars, we saw a woman with a little girl sitting on the bench. She looked very sad and scared and was holding a Hello Kitty bag between her legs and swinging them methodically back and forth. I thought she was waiting to be scanned and was going to introduce her to the boys and let her know that Sam was an old pro and that there was nothing to be scared of. She didn’t reply when I told her the boys names and when I asked the woman if she was waiting to be scanned. Tears ran down the woman’s cheeks and she said “No, her sister, my neice, is being scanned now and they are probably going to declare her brain dead today. Leukemia has spread to her brain. We have been here for two months and they told us she might not make it through this scan. My heart just broke for them. I gave her a big hug asked if I could do anything for them at the moment and scooted the boys out to the garden to play hide and seek and left Neil and Grandpa there to call me when the tech was ready for us so they could have some privacy. I can’t get the poor little girl out of my mind waiting for news of her sister. I don’t even know their names but please think good thoughts for them as I know their family had a tough Easter and has a tough road ahead of them. We just have to stop cancer.
We should some news today or tomorrow with an official scan reading from either Dr. Sholler or Dr. Willert. As it is, our little boy is riding high with no casts today and very happy. He can’t wait to go swimming. Grandpa leaves tomorrow and they will miss him. They’ve been having lots of pillow fights with him and Andy wore him out at the park a few times playing football. I think he’s going to take a long rest when he gets back to New Mexico.
 Margot
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Scan
By Margot | March 21, 2008
So we’re not really sure how the scan looked. The left leg, where we’ve had uptake in the past, was perfectly clear. The right leg looked like there was some uptake around the knee but it was faint and we’re not sure how much of it to attribute to growth plate issues at this point. Growth plates light up and Sam’s growth plates are now supposedly bigger. There was a disctinct small spot just up and to the left of Sam’s port. The port lit up brightly which is of course common because that is the injection site. The tech said the other spot looked like a line or a spill of some sort and not necessarily disease. The last time something like that happened, Sam had a dressing on and as soon I redid his dressing the spot went away. He wasn’t accessed today so I don’t know. If it is disease, it will be on the sternum or the collar bone but looks right in the middle of his body to us. The MIBG camera was being kookly today so we couldn’t do the full body scan, all we could do were the static scans, which are supposed to be better anyway, but they asked if we could come back tomorrow for the full body scan. We rented a movie last night and the kids didn’t get a bath so you can bet that I’ll be scrubbing the area of the collar bone spot with a Lady MacBeth-like vigorousness if they can fix the machine for a scan tomorrow. I’m sorry that I can’t post that we are all clear but we’ll wait and see what the report has to say and what the collarbone spot looks like tomorrow. Yesterday’s LDH was 674 so better.
Stay tuned.
Margot
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Arizona, St. Pat’s, Scan Friday
By Margot | March 19, 2008
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The boys have had a good spring break so far. We had a great time in Arizona. The boys had a ball at the game and even more fun at the hotel. The hotel could have been in the middle of nowhere and they would have loved it. They got up and made their own waffles at the breakfast bars, ran up and down the halls, and rode on the luggage thingys. As it happens, the hotel was in the middle of nowhere. We stayed in Yuma a couple of nights to break up the drive since it was such a quick trip. Neil and I stayed there about twelve years ago on our only other spring training trip and we still joke about the guy at the hotel we stayed in. We asked him if there was a good local restaurant he could recommend and he said, “Do you like seafood?” and we said, “Yes,” and he said, “Well there’s this place down the street that is my favorite place to eat and it’s called “The Red Lobster”. It was very funny. Anyway, it very good to get away into the warmth and sunshine of Phoenix, I wish we could have kept driving and not have had to come back and face the music.  We all played catch on the grass outside the park and Charlie threw the ball back and forth with Dad. He watched the pitchers in the bull pen for a while and now he lifts his leg when he throws. It’s a crack up. We only got one signature from a player and he was an Oakland A (Jed Morris). We googled him afterwards and it turned out he’s fighting lukemia. What are the odds? We told Sam he was fighting cancer too and Sam thought that was pretty cool. He wants to play baseball now. Sorry about the pics. I keep resizing them and they still turn out like postage stamps. I was under the impression with the Tony Hawk pics that if you clicked on them, they’d get bigger. Obviously, not the case. Doug promised he walk me through getting the right size.
We had corned beef and cabbage with Pistachio cake for dessert at Colleen’s house for St. Patrick’s day. The boys were very upset that Mommy forgot to set the leprechaun trap the night before but we theorized that the leprechauns would be out and about until midnight of that night. So after Colleen’s house we came home and the whole family chewed a piece of gum and we stuck it on a plate poured molasses and maple syrup around it, stuck a gold coin in it and covered the whole thing with whipped cream so the leprechauns wouldn’t suspect anything. Sure enough, in the morning the whole house by torn apart by those tricky leprechauns, they tipped over the chairs, took the gold coin and left some chocolate ones and poured the maple syrup and molasses all over the table. The boys will tell you all about how we almost caught him.
Yesterday Maureen came and took Sam and Andy to minature golf and video games at Boomers and then took them to Toys R Us to buy a toy. I think it was their dream date. Andy coming home said, “That was the best day ever!” Grandpa flew in today and we’re going to have lots of fun with him in the coming week.
Tomorrow is the injection for the scan and Friday is the scan. Please think good thoughts for Sam. A lot will depend on what shows up on that screen. The bone marrow is less than one percent positive. We are exploring several options but won’t make any big decisions until after Friday and labs tomorrow.
Margot  Â
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Results so far
By Margot | March 14, 2008
Dr. Willert called this morning and gave us results so far: Sam’s bone marrow is positive. Barely positive, but barely positive with neuroblastoma is like being barely pregnant. His HVA is 11.6 (down) and VMA is 6.3 (up). The MRI showed no abnormalities – a good thing but she doesn’t know how far it went up the femur. The MIBG is next Friday and we’ll learn a lot more then. Neil expected that it might be positive because as he says “with relapsed kids you always have to assume there is some sort of disease there.” I want to be the ostrich with her head in the sand and assume there is no disease there. But now there is no need for assumptions because we have concrete results. I guess if I stretch my ability to be Pollyana to it’s limits, I can say that at least Dr. Sholler will be able to grow Sam’s cells and we can get characteristics from Dr. Brown at MD Andersen. As much as it will be useful, I so didn’t want success on this one.
Sam’s copper levels are back up – a good thing for his bones.
We are leaving for Arizona in a few hours to go see spring training and I have to get to packing and then meet Sam and his class up at the park for an Easter egg hunt. Â I’ll post more next week when we get back.
 Margot
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LDH 799
By Margot | March 12, 2008
Well today’s LDH is 799. I don’t like going into an MIBG week with 19 HVA and 799 LDH.  For Sam’s age group the high end of normal LDH is 750. However, I think the last time we had an MIBG, I scared everyone to death with high blood numbers beforehand and it was fine and the numbers went back down in the weeks following the scans. We’ll probably get today’s VMA/HVA next Monday. I am thankful that we have an MIBG next week because then we won’t have the endless speculation of “Could it be this?” “Could it be that?” We had an MRI yesterday and a bone marrow biopsy today. Both went smoothly except that the MRI of the whole leg wasn’t ordered, just the ankles and the knees which does not help us much with the neuroblastoma knowledge but will tell us more detail about his growth plates.  Sam is a little sore from the bone marrow biopsy and very cranky and weepy (a side effect of propofol- it usually happens to Sam if he wakes up too early on it). The bone marrow is being flown the Dr. Sholler in Vermont so she can grow Sam’s cells and then send them to Dr. Brown at MD Andersen if there is anything to grow. We meet with Dr. Chambers on the 17th to discuss the MRI and then the MIBG injection is on Thursday and scan is on Friday. I’ll post news as I have it.
 Margot
Topics: Progress Reports | 2 Comments »