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Back in the Saddle (Or on the Field for us Hutchisons)

By Margot | March 23, 2009

Boys are in school today. No medical dramas except for Charlie, who acidentally got kicked in the tooth wrestling with Andy and needs to get his tooth x-rayed this afternoon.  We had a nice spring weekend, went to the zoo on Saturday for Charlie.  Everytime we play with cars or action figures downstairs Charlie has his guy ask the other guys “What do you want to do today guys?”  and then he answers “How about we go to the zoo?”  Hint: Mom take this child to the zoo.  He loved it.  There was a band there and he danced to the band-  he’s got some great moves- and he was fascinated by all of the animals.  Sam and Andy on the way to the zoo acted like they were too cool for the zoo (Really at six and eight?)  Andy’s quote, “Why do we have to go to the stupid zoo?”    They ended up having a great time. It was “Bear days” and they had snow for the polar bears and the grizzly cubs were chasing each other around, we rode the skyfari and Charlie got to see the elephants.

We played Pictionary on Saturday night, Sam and Andy against Neil and me, and Charlie helping both teams out.  The boys were a very funny team.  Sam drawing the Eiffel Tower for Andrew:  Andrew says “Tower!” Sam: “Yes, Yes,  but it’s in another country”  Andy: ” Oh, I know it, I know it, Um, Um,” (slaps forehead several times)  Sam:  “Are you thinking of the Eiffel Tower?”  Andrew: “Yes, yes,  Eiffel Tower!  Wohoo we got it.”  They won of course.  They both know the Eiffel Tower well because we read “The Sweetest Fig” a lot at bedtime -  Great book if anyone needs a new one.

Sunday was soccer day.  It started out raining but the sun came out for the games.  Andy’s team lost but he played very well.  It’s a bit tough on him because now that he’s moved up to the under eights this season he’s no longer scoring at will.  He is though, for one of the youngest kids on his team still an offensive powerhouse and moves the ball right down the field.  Sam’s game was exciting. They lost but had the ball down at the other end of the field enough to keep the parents yelling.  They played a really tough team and pretty much played out of their minds.   They had one goal and the kid who scored it was, drum roll please…… SAM HUTCHISON!  He dribbled it down all by himself from midfield and made a perfect shot in the air, in the corner of the goal.   He was so happy.  He’s still talking about it this morning, I think he’ll be able to ride the happy goal wave for the next three weeks.   I know, really I should get a life since I’ll be riding it too, but hey, after our last three weeks, I’m going to milk the vicarious sports adrenaline for all it’s worth. Both Neil and I about lost our minds and ran out on the field to hug him.

After the games we met Meredith, Luke, Ashlyn and Katherine at the park.  There happened to be a bunch of dads with their boys there playing baseball, parents against kids. One of the Dad’s, Dean, also coaches PeeWee basketball and knows us well from there.  He invited Sam Andy and Luke to play and the boys played baseball all evening. 

So, if you haven’t guessed from my rehashing of sports marathon yesterday, Sam is feeling great.  Tomorrow is Andy’s field trip to Legoland.  It cracks me up that the field trips are to Legoland.  Supposedly there is an educational aspect to it at the beginning of the day.  Neil and I are thinking it’s a racket on the part of Legoland because every kid is going to come home and bug their parents to take them to Legoland.  Wednesday is the jogathon at school.  This is the first year Sam will be able to participate and he’s looking forward to it.  We have a few more events lined up for the rest of the week.

No, no we are not ignoring the results of last week’s scan. We are trying to figure out the next step.  It will likely be 3F8’s which, with the upfront high dose chemo, will cause us to hit the pause button on all of this blissful normalcy. We are weighing options but that is what we are leaning towards.

Please stop by the amazing and inspiring Erin Buenger’s site today and offer some words of encouragement :  http://www.erinbuenger.blogspot.com/

Margot

Topics: Progress Reports | 11 Comments »

Results

By Margot | March 20, 2009

To start with, the CT was totally clear.  Wohoo! No soft tissue disease.  The MIBG summary read as follows:

IMPRESSION: Mulitple areas of skeletal metastases.  Findings are likely unchanged compared with the prior study given the differences in technique (not sure what differences they are referring to here).  The only appreciable difference is the previously seen left proximal humerus lesion is no longer visualized.

So that seems really good but when you go back up to the findings section where there is a more detailed report it confirms all of the spots that were there before and then has a sentence saying:  There are also questionable areas of increased uptake within the spine and possibly sternum.  There is also a questionable area of increased uptake within the left calvarium (that’s the top of the skull).

Of the three bone marrow samples, the San Diego lab reported that two were clear and one had 33% disease.  So one out of two isn’t bad but 33% is a lot.  Dr. Sholler said that her sample is growing stem cells. Not good from a disease standpoint at all but good from a testing standpoint.  Sam’s cells have been very stubborn about growing at all so now there is something to test.  Kind of bittersweet.

 Our VMA/HVA is up: VMA 31.8  HVA 32.6  after our week off chemo.  We’ll have to wait and see if that is a trend – it was trending down.

Mixed news I guess. Nothing devastating and some good news in there but very strong signs that we can’t turn our back on Sam’s disease, not that we ever have.

Sam is in school today.  I have his parent-teacher confernce at noon with Mrs. Abbuhl.  Somehow these conferences keep falling on scan week. Certainly puts things in perspective.  The boys have a half-day for the conferences so I’m done talking with Mrs. Abbuhl we’ll go do something fun on this first day of Spring.   I keep promising Charlie we’ll go to the zoo so maybe that’s what we’ll do today.  I’m going to try and get some pictures of soccer this weekend and will post some early next week.   Doug is going to update the banner on our website since Charlie is a little baby in the family pic., I thought I’d put some of the latest pictures from Deb up there.

Margot

Topics: Progress Reports | 5 Comments »

Scans

By Margot | March 19, 2009

We have been so caught up in the revolving stomach flu, pink- eye, fevers, etc.   that scans this week snuck up on me.  Sam was in the hospital on Monday and Tuesday nights due to a fever.  He had good counts but they wanted to wait until his blood cultured since it was a 1am admit and he was still fevery on Tuesday.   He had a bone marrow biopsy on Tuesday while he was in-patient. It went as well as bone marrow biopsies go. He’s still a little sore. He was so good through everything and just asked for me to have a bakugan when he woke up.  The in-patient nurses marveled at how well he took all his medicines, got accessed etc. Yesterday we had the CT and MIBG scan. On the MIBG, there were some suspicious spots on the spine and they asked us to come back this morning for a 48 hour view.  Neil and I couldn’t see anything there today but we’ll see what the read is because we saw it yesterday too.  There is also what looks to be a new spot, or maybe the same spot brighter, near the bladder area. Hard to tell if it’s bone or not.  The arm and head looked clear and the legs looked somewhat improved.  So, really not sure what to make of any of it, we’ll have to wait and see how they read it.    Meanwhile Sam was back in school today (after the follow up scan) and his normal goofy self.  As much as it sucked being in the hospital, we had a lot of fun together and a lot of laughs believe it or not.   He has been in such a funny, goofy mood lately and it was nice to read next to him in the bed and make him laugh over his homework. We laugh a lot at Charlie.  Sam almost cried laughing when we took Charlie down to eat at the hospital cafeteria and to my dismay and Sam’s amusement, he started spitting out his food all over the table saying it was yucky.  He was probably right, the cafeteria food is sort of gross but his expression of disgust sure made Sam laugh. After they let us out yesterday and we got home and got settled, Dr. Kim called and asked us to come back to the hospital for another blood culture because some skin bacteria was growing in Tuesday’s night’s culture and she wasn’t sure if it was actually in his line or just a contaminent.  So, we hauled everyone back to the hospital and got another blood draw and got home at 8pm very tired. Needless to say, I’ll be happy for Sam and the whole family to have a few days off from the hospital.  We’ve seen way too much of that place lately. 

My pink-eye from hell has finally resolved itself.  The opthomoligist put me on a steriod cream which made my heart race and gave me crazy dreams.  I couldn’t figure out what was wrong until I remembered him telling me to be careful becuase it was a very strong medicine.  I was laughing at myself because I went to Andy’s awards ceremony (he got an award for being an inquiring mind) before going to the hospital yesterday morning with one bulging eye and my glasses on and one lens popped out of the glasses and I was jittery from the steroids and I think people were a little afraid.  I’m just waiting for the telltale steroid taking dent in the forehead (we always could tell in college which iron pumping guys were on steroids by the dent in their forehead) to show up and the picture will be complete.  I digress - trying to keep my mind off of the scans.  The good thing about the scans is we will have a complete picture with a CT, bone marrow and MIBG so that’s a good thing I think.

 Andy is back to his old self and Charlie is good. Charlie has become a little demanding lately, i.e., ordering people around without the word please, As in “get me chocolate milk you dufus.”   Though it is funny, trying to nip it in the bud. 

 Please pray, wish on dandelions, stars, and pennies and think positive thoughts that there are no new spinal spots.  VMA/HVA is not back yet from this week.  Last week was VMA 28 (stable) HVA 22 down.  So, sort of a good sign.

Margot

 

  

Topics: Progress Reports | 5 Comments »

The Luck O’ The Irish

By Margot | March 11, 2009

Andrew is home now and is showing slight improvement.  Much slower than we’d hoped.  It’s taking a while.  This morning he’s sitting up and playing some video games with his brothers.  The amount of television all three have watched in the last week is embarrassing.  I got so desperate last night that I made them play charades with me while they were lying on the couch guessing what I was doing.   Charlie really got into it and decided we should guess what he was doing when he put his hands on top of his head and spun around.  Turns out he was a spinning carrot.

Sam still has a bad stomach and I can hear all the same gurgling sounds I heard in Andrew’s stomach.  You know it’s not good if you can hear it from accross the room. He is eating a little, though his stomach hurts right afterwards.  The sucky thing is this is supposed to be the week he eats like a horse because he is off chemo and puts a little weight back on.  That’s not happening however.  His counts from his blood check were pretty good, everything normal to above normal so this chemo is not hitting him too hard blood/platelet/ANC-wise.  So if we can keep the VMA/HVA dropping we’ll be in good shape.  Just a small “if” there.  And of course we need to get him over this new bug and back on his feet.

I was going to write that we need a little of the Luck O’ the Irish for St. Pat’s next week (maybe that and some green beer will help) and then I started thinking that the Irish really had crap luck with the potato famine and all, so I looked on Wikipedia to find out how the term originated and here is the answer: “The saying refers to the fact that the Irish people have come through such overwhelming adversity and have come out on top and kicking! It must be luck… or true perseverance.”  So, actually it pertains very well.

So, from a family with lots of Irish blood running through our veins, here’s to all NB kids and families having the The Luck O’ The Irish- and anyone else who needs it.

Margot

Topics: Progress Reports | 9 Comments »

Andrew is in the Hospital

By Margot | March 10, 2009

Andrew was admitted to Children’s yesterday.  I brought him in to the ER at 4am on Saturday with pretty severe abdominal pain.  Neil and I were worried it might be appendicitis as Dr. James had told me to watch out for it. The X-Ray showed a belly full of air, his stomach and colon are totally distended and his diarrhea never stopped. They gave him fluids for dehydration.  The ER doc was on fence on whether to admit him but went ahead and sent us home Sunday afternoon.  Andy never got better though, still had a fever, stomach pain and constant diarrhea.  I took him back to Dr. James yesterday and she sent us back to the hospital for admission.  He is on IV fluids and nothing by mouth.  They think his stomach needs to rest as it isn’t absorbing anything now anyway and shoots everything right through.  Poor little guy.  He was very brave all day and so sweet with all of the nurses.  He did really well when they put the IV in.  Neil spent the night with him last night and called early to say that he’s feeling a little better today.  He still had a fever yesterday and his left eye is still red and swollen, though we are putting eye drops in them.   I’m hoping with the stomach rest he’ll start to turn around. I don’t like that he’s still having fevers.  I go back and forth from thinking he’ll be just fine to being sick with fear that something serious is wrong.  The doctors aren’t too panicked so I’m hoping that’s a good sign.  Colleen said she’d tell Mrs. Sussman and maybe have his class write him some get well cards.

Sam stayed home from school yesterday with a sore tummy and started having diarrhea. Neil brought him to his blood check while I was admitting Andrew and he threw up all over the car.  He’s pretty chipper and energetic though but just says his tummy hurts. I’m keeping him home again today.  His LDH was in the 600s (good) yesterday and he played in his soccer game on Sunday.  He made a couple of saves as goalie and they won 3-0.  He and Neil came over to the emergency room after the blood check to wait with us while Andrew was being admitted. Neil said while we were waiting to get into Andrew’s room, there was a woman waiting in the little area they’d put us while they were cleaning Andrew’s room and she was looking at Sam’s bald head and asked him, “Are you sick?”  He answered, “Well I have a little diarrhea but other than that, I’m fine.”  Hee hee. He actually got a visitors sticker at the hospital, it was quite a novelty since he’s always the guy with the wrist band.  He was really nice to Andrew and has been trying to help him get his tylenol down.

Charlie was throwing up yesterday morning but seemed to be fine all last night so I think his was short lived (hoping so anyway).  He was a bundle of energy last night before bed jumping from dresser to bed, saluting and saying “Aye aye captain Mom,” when I said we needed to put on pajamas.

So, as Neil said,  here’s hoping our week of throwing up and diarrhea is going to come to an end soon.   I think if I ever need a second job, I might make a good janitor.  I’m totally numb to cleaning up bodily fluids at this point.  Here’s to Andy and Sam feeling better.

Margot

 

Topics: Progress Reports | 9 Comments »

All Three Asleep at 2:30pm

By Margot | March 7, 2009

It’s 2:30 on a Saturday afternoon and all three boys are asleep downstairs.  Sam finished his last day of irrino today and now he gets a little chemo rest before the next round. Our food honeymoon is over. He’s really not had much appetite this week and threw up twice today.  Other than that though he’s been to school every day and tolerated the oral chemo pretty well (easy for me to say). He got an A+ on his Gandhi report.  He was so cute and I was so proud of him.  He presented the whole thing so smoothly. His last sentence was,”I chose Gandhi because he was a risk-taker and he changed the world.”  I don’t have pictures but we did get some video – on my list of things to do is learn video and the website as soon as I have a few more hours. He had a sheet around him and some round glasses but at the last minute decided he didn’t want to wear the mustache we bought him.    The kids asked questions at the end and someone asked Sam who shot Gandhi and he said, “Uh, a Hindu from Britain.”  It was funny, slightly confused there. It was good for the kids to learn about Gandhi,  he taught a lot of great life lessons.  I was glad to learn more about him too.   I used the movie throughout all of high school every time my dad would start to lament when I was going to a movie with my friends about what trashy movies we saw,  I would bring up the fact that I saw Gandhi. I think in college,my dad finally started to ask, “How long are you going to use Gandhi?”  I didn’t remember much of it and it is an awesome movie if you ever need a rental -not necessarily young kid oriented some parts need to be skipped.

Sam had his first soccer practice this week and both boys went to both practices so they had two hours of soccer practice this week.  Tomorrow are the first games for both boys though Andy won’t be playing in his.

 Andy is knocked out from the stomach flu and a sinus infection.  Frankly, he’s been as sick as I’ve ever seen him.  He hasn’t  left the couch for the last three days, he’s had nonstop fever, vomiting, diarrhea, headache, etc.   We’ve been back to the pediatrician twice now and she has called twice today to see how he’s doing. We have to watch for dehydration because the poor guy can’t have many fluids left in his little body.   He’s not big on taking any medicines at all -not even buggle gum flavored tylenol or the melt away stuff, he doesn’t like gingerale, gatorade, bananas, or most things that are soft on the tummy.  We’re pretty much limited to popsicles.  I keep thinking he’ll turn the corner but so far he’s been consistently miserable for three straight days.  Hoping tomorrow is the day and hoping that Sam built up an immunity to whatever it  is with his bout with it a couple of weeks ago.

Charlie is asleep because it’s his nap time.  He’s doing well – calling people “dufus”, and “nutjob” a lot.  “Dufus” comes from Andy and “nutjob” is pretty much said affectionately by the whole family – though it’s funny coming from our two year old.  He loves his little gym class and does all the songs and exercises.  He and Jett have become fast friends. He’s coming along in swimming – getting a new teacher on Monday to see if he’ll come along any faster. He is a very funny guy.

Sam’s numbers for last week were: VMA: 29 HVA 28  Lowest combined total in quite a while so good we think.   I would rather not have him asleep downstairs in the middle of the day but I push a lot and he’s just finished four days of chemo so he’s having a nap and no need for me to freak out about it.  See how calm I am;-)?  Really though, he looks good.  We have to keep weight on him now.

More later this week.  I’ll try not to go so long between updates.

Margot

 

Topics: Progress Reports | 1 Comment »

Dinosaurs and Gandhi

By Margot | February 26, 2009

bearskin.jpg

Sam and Andy in front of a bearskin

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Boys listening to the paleontologist discuss unearthing a mammoth (mammoth tooth in front of Sam)

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The two goofballs in the pictures are ours

We are having a relatively calm and normal week.  Sam finished his tenth day of radiation yesterday morning.  He’s gone in every morning at 6am for the past ten days.  He stays asleep for the car ride and on the table and then is finished, dressed and ready for school.   We hit four spots, two on his leg, one on his upper arm and one on the sternum.  He is taking oral irrino/temodar this week with cloroquine.  He is feeling fine and in a great mood, happy and funny and full  of energy.  Cross our fingers, knock on wood.   I don’t have numbers back yet from Monday but will post as soon as I do.  His urine seems to be clearing.  His last urinalysis was clear but he still has some visible blood now and then. 

He played his last basketball game on Saturday.  It was a playoff game and they lost by three.  It was a one point game at one point and we thought we might pull it off.  We will have a banquet, Andy’s last game tomorrow night, his banquet and then we move on to soccer.  Neil has signed up to coach both boys teams, slighty crazy idea but he figures since he’ll be at both games anyway,  it’ll just be one extra practice a week.  Yesterday, thanks to Susie Meyers, we got the most awesome behind the scenes tour of The Natural History Museum.  She invited Sam and a friend or two (Joe and Tanner) and his brothers to come to the museum and meet some of the scientists and see all the back offices and specimens.  The scientists were wonderful and the kids got to see and hold a mammoth tooth fossil, see how the birds are stuffed, studied and stored, all the cool bugs in the entomology department, complete with glow in the dark scorpions and enormous beeetles, and all of the stored snakes and lizards - they all touched the king cobra and the rattlesnakes floating in some kind of preservatory liquid.  Susie, thank you so much.  I know five boys was a lot to show up with.  They all loved it, though Charlie was more interested in the moving cabinets than what was being said.  They got to take home 3 million year-old sand dollar fossils.  Trying to get them all to stay quiet through the offices and hallways where people were working was a bit of a challenge but they did well.

Sam’s class has to do an oral presentation of a famous person who changed the world somehow. They have to dress up as the person and speak in first person and do the whole biography.  Sam/Mom ;-) is working on Gandhi.  We’ve been watching the movie in parts to get a sense of context and it’s been funny the past few days because when the boys are fighting I say something  like,  “Try to be like Gandhi and be peaceful.”  It works for a while and then I hear, “Sam is not Gandhi, he just hit me.”  I’ll take some pictures when “Gandhi”  gives his presentation.

Holding steady for now.

Margot

 

Topics: Progress Reports | 10 Comments »

Numbers Down

By Margot | February 20, 2009

 Quick numbers update: 

Neil just called me from the hosptial and our VMA/HVA numbers are down.  We took them twice this last week.   On Monday afternoon and first thing Tuesday morning.  The Monday afternoon numbers were: VMA 30 and HVA 19 and the Tuesday morning numbers were VMA 35 and HVA 27.   Quite a big difference for one day -might have been the time of day.  Still if you take the average, we are moving in the right direction. 

 Margot

Topics: Progress Reports | 9 Comments »

Out in the Sunshine

By Margot | February 19, 2009

We are having a lovely 72 degree day here in San Diego.  It has rained for the past two days. As if our life were a movie, the weather has turned beautiful on our first day out of the hospital.  The day we went in it was pouring rain.  I think my lowest moments have been in a dim hospital room sitting next to a sleeping Sam -and in Monday’s case watching the rain pour down- wondering how our little boy can take all of this. Yesterday I had a break down in the hospital and Joanne, the parent liason talked me off the ledge.  Thank you Joanne, you are wonderful.  Everyone was very ginger with me after that and the social services lady even stopped by.  I was imaging everyone around the front desk, “Alert, we have a crier in room 117.”  Anyway, just coming home was good and seeing Sam feeling good today was good.

As a side note, I was thinking that our tour of hospitals is becoming quite a list (San Diego, MDAnderson, Children’s LA, City of Hope, Maui Memorial, and all of those that Neil has visted without Sam would probably triple that list -quite the tour.  Maybe we’ll be like one of those families that travel around trying to visit every baseball stadium in the country but  instead of stadiums it will be Children’s Hospitals.

Anyway, we are out. It’s a beautiful day and Sam is back in school. I just went to check on him and Andy at lunch and he’s playing four square with a big smile on his face. Just what I like to see.  I was worried about how he would do because last night he was helping me with dinner and he said I’m feeling kind of woozy, I’m going to lay down and then slept through the night. But he woke up well this morning aside from the sniffles and said he’s having a good day. It was “Dress like a Famous Person Day” at school and I totally forgot about it.  It was funny because Sam told his class he was David Beckham. When he first lost his hair I got him a bunch of bald sports star posters and David Beckham was one of them.  He said, “You know, I figured since I have no hair, I could be Beckham.”  It was funny.

Neil and I had a good meeting with Dr. Willert this morning and we have a plan in place for next week that will go a little easier on Sam in terms of chemo but will still beat back disease.  It may change but it’s nice to have a plan.  We’re still waiting for Monday’s VMA/HVA numbers to come back.

 Margot 

Topics: Progress Reports | 3 Comments »

In-Patient

By Margot | February 17, 2009

Dr. Kadota gave us a direct admit this morning by phone.  Sam woke up feeling cruddy and with diarrhea and still fevery.  When we got to the hospital his fever had officially spiked 101.5.  It was 99 last we checked this afternoon.  He’s perked up some. We had a movie marathon of Karate Kid (really I had a poster of Ralph Machio on my wall in Jr. High? yikes), played some checkers and now Sam is taking a nap.  His ANC is a whopping 50.  Platelets are 15 and HGB is 7.8.  Ugly numbers.  I’m thinking we’re going back up since we are a little higher than we were on Thursday and there are 60 monos. but we’ll see what tomorrow brings.  For tonight we have a stay in the lovely Hotel Rady.  We actually haven’t stayed overnight here since 2007 (that’s what the resident told me anyway).   It’s funny to sit here looking out the window at the garden and think of how many times I played hide and seek and hotwheels and “hot and cold” in that garden with Sam and Andy.  I know every good hiding place there is out there. We have nurse Jen who was here when we were here before and is great and we get to see Sheila walking around. It’s amazing how familiar the whole routine is. One thing that’s changed since we were in-patient before is that they have a wireless network.  Woo Hoo!  I’m actually glad Sam is getting hydration and they are doing a urine and blood culture. I just had a sense of relief once we got her after wondering for two days, “Is he going to spike? Is he getting dehydrated?” Urine looked sort of clear this afternoon and was clear again last night.  We have early radiation tomorrow morning (6am) so they’ve arranged for transport. Sam will probably be too sleepy to appreciate the whole ambulance ride on the way there but maybe on the way back it’ll register.

Charlie and Andy are at the Monacos for the day.  Charlie feels right at home there. He walked right in and was happy as a clam when I dropped him off this morning.  We are starting to potty train him – not much progress so far as you can imagine but he picked out his Thomas and Cars underwear. I’ll go pick the two boys up when Neil gets here and we can bring dinner back for Sam and Dad. 

That’s about all for the update.  I think Sam is on the mend.  I’ll post some more tomorrow.

Margot

Topics: Progress Reports | 8 Comments »

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