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One Week to Scans in Philly

By Margot | November 8, 2009

Sam stayed home from school for the most of last week.  He was feeling fine but there were nine kids out in his class with some version of the flu and a couple of confirmed cases of swine flu.  Also, we figured it might be good for him to take it easy for a few days anyway given the bladder issues.  His bladder started to get worse around Wednesday and we went back into the clinic for some hydration and tried to talk to the urologist but since Dr. DeCambrie was out for the week, we had an uphill battle to get anyone to talk with us.  Dr. Willert sent us home on home hydration but it seemed to be getting better before we even started the hydration and has been relatively clear for the past three days.  It’s really odd because there doesn’t seem to be any rhyme or reason to what sets it off or what makes it better. Thursday we went to the consult at UCSD for the hyperbaric oxygen treatment.    Sam would have to do it every day after school for twenty days and be in this submarine like thing with what looks like a space helmet (but very light) on his head.    It does seem they’ve had very good results.  We couldn’t get started on that until November 30th though and it has to be consecutive so it might mean little to no Christmas traveling.   We’ll cross that bridge when we come to it thought.  It still needs insurance approval.  Sam is not looking forward to it.

Sam did go back to school on Friday as his classroom seemed to less infected and the sub had cleaned it from top to bottom.  He was very happy to be there and he went to Blake’s birthday party of Friday afternoon and had a great time.  We unhooked him from hydrations so he could do school and the party without the backpack and he brought a big water bottle.  It seems to work out well.    Thanks Edmunds family for all your help with logistics.    Yesterday we went to the Picasso/Miro exhibit at the art museum and the boys really enjoyed it.  They loved the little room in the museum where they could make their own art and hang it up.  I’d tried to prep them on who Picasso was before we went and when Andy saw the paintings he said, “But Mom, how can this guy be so famous, it’s kid art?”  We’re trying to figure out some good non-sports activities for a while, though I have to say that keeping Sam from running around while he’s feeling so well is next to impossible.  He’s been in a great mood lately and aside from the bladder drama, it’s been great to have him off chemo for this long of a time.  He just shines. We’ve been doing some board game nights and he is still a very funny Sorry player.  He’ll yell out, “It’s my turn, it’s my turn” -  it’s always hard to tell who’s turn it is because someone always seems to be moving their guy in our games -  Then Sam slying sneaks a look at the top card and if he doesn’t like what it sees, he says, “Oh actually Andy, it’s your turn.”  Nice brotherly love.  Sam’s doing well in school for all he’s missed.

Andy is doing well too.  I kept him home on Tuesday when I thought maybe the whole school was going to come down with the flu but he went back on Wednesday and finished off the week.  He did really well in his soccer game yesterday, scored two goals and did a little of what used to be his trademark dance when he was a little guy after the first one and is glad his team in winning mode after losing their first game last week.  Yay Jake, he scored a goal yesterday!  Hope he and Andy are tag team partners for years to come.

Charlie stayed home from school on Tuesday too only because both his brothers were home.  He looked at me like I was crazy and said, “I’m not going.”  He is so darn cute.  He plays soccer the whole time Andy has a game or practice.  Yesterday he recruited Joe and Jake’s grandpa to play with him.  He kept calling him “Big Guy.”    He’s discoverd the teenage mutant ninja turtles now and we are reliving for the third time everything Ninja turtle.  Neil says he tells him about them as if he’s just discovered the dead sea scrolls.    He even uses the acronym TMT which cracks me up.  I realized after reading over my last post that it sounded horribly mean.  I didn’t actually let Charlie believe he was going to Legoland and then took him to get a shot.  I corrected Andy right away and told Charlie we had to get some medicine but for some reason I think he still wanted to believe he was going to Legoland instead.   He asked me yesterday, “Mom, why is everything in our mind?  You know when we lose stuff?  Where is my mind?”  This because his mother is constantly saying, “Where is that?  I’m losing my mind!”

The boys have been playing a lot of Mario Winter Olympics on the Wii and are now excited for the Winter Olympics to start.  Neil got it when Sam was in the hospital last.  He keeps trying his best to beat the boys at all the games and they smoke him.

Sam and Neil will be in Philly one week from today for scans.  Neil is going to take him this round and then I will take him back if we need to go again for whatever is next.  Aside from having said his head hurts twice in the space of five days and giving us a heart attack, he seems to be feeling really well.  Tomorrow he has a blood check early and I should have some numbers for you.

Margot

Topics: Progress Reports | 5 Comments »

5 Responses to “One Week to Scans in Philly”

  1. tommy hutch Says:
    November 8th, 2009 at 9:54 pm

    Thinking good thoughts for Sam and his crew.

  2. Colleen Kuhn Says:
    November 9th, 2009 at 4:09 pm

    I am sure that was a good decision to keep him home last week.
    Good R & R for his battered body.
    Lots of smiles and love to all of you,
    Colleen

  3. Abra McKean Says:
    November 9th, 2009 at 4:35 pm

    Praying here as always…..Charlie cracks me up what a funny little man you have. Praying hard for great scans next week.

    Love
    Abra

  4. Lara Weberling Says:
    November 10th, 2009 at 2:05 am

    Looking forward to getting some good news next week!

    Lara/Kevin/Elle/Hans

  5. Carrie Palmer Says:
    November 11th, 2009 at 1:34 am

    Enjoy this week of chemo -free. It sounds like Sam is really doing great. I know his scans will be improved- hang in there!