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Here in Philly

By Margot | August 21, 2009

It’s 6am Philly time.  I came in yesterday around 5pm and feel much better being here.  Thank you Lisa B. for waking up at 4 in the morning to take me to the airport.  I couldn’t stand the thought of me getting here and Sam already in isolation.  I was able to sleep next to him last night.  Sam is comfortable with morphine around the clock but his right arm is still very sensitive and he doesn’t want to move it much and we have to give him an added boost every now and then.  Yesterday he was up doing legos and playing video games.  He was in too much pain to go to the Phillys game on Wednesday night.  Kim Kow came through with tickets about two minutes after I posted on our web site.  Kim, I’m so sorry.  He’s still talking about wanting to go to a game so maybe when we are done with all of this.   We watched 17 Again last night until 1am (still on CA time) and he said it was great.  It is definitely too old for him but I think/hope some of the stuff went over his head. 

I am up because they were supposed to put the catheter in this morning around 5:30 or 6:00 but the nurse came in and said that they won’t take him until 10:00am.  Bummer because he’s not too excited about the idea as you can imagine and I was hoping he’d still be kind of sleepy and not too hungry being NPO.  Maybe since he’s still on CA time that will be the case.  We are in a lead lined room with plastic all over everything.   I feel like we are about to become Meryl Streep and Cher in Silkwood.  Sam woke up when they did his vitals and said, “Mom, am I radioactive yet?” 

Neil slept at the Ronald McDonald House last night and I stayed here.   He’s been doing a fantastic job keeping Sam’s spirits up. I don’t know how he’s still going – must be complete adrenaline.  He said Dr. Mosse told him how fantastic Sam looks and that she looked at last week’s scan yesterday and couldn’t believe it was the same kid.  I don’t know if that scares the sh$###t out of me or makes me happy that he looks so well – a little of both I guess. Both she and Dr. Maris seem pretty upbeat that Sam will respond to this. 

Uncle Matt is here and has been great.  He brought Rosco and Sam got unhooked yesterday for a quick Rosco visit.  He’s going today to get some puzzles and games and movies.  Everything we use will have to be thrown away.  I brought a bunch of books to read.  Sam wants to start with the Island of the Blue Dolphins since I told him how much I liked it growing up.  I figured it was appropriate given we’ll be on our own little radioactive Ilsand for the next few days.

Andy and Charlie are doing all right.  My mom and Elizabeth stayed with them yesterday and last night.  Colleen took Andy to tennis camp and  his first soccer practice and he went swimming at Monica’s in the afternoon so I think he was pretty beat.    She said he told Jake on the way to soccer that he’s the best guy on the team and then on the way home he conceded that Dusty was pretty good too.   He doesn’t have much of a confidence problem :-)   Charlie is getting ready to go to school and says he’ll be potty trained “as soon as he goes to school.”   I hope he’s doing ok at home.   Grandma Joan and Uncle Tommy and Cousin Abby are coming in today to stay with he and Andy and Neil will be home tomorrow.

That’s it for now.  They hang the MIBG around noon today and then I’ll be laptopless so I’ll have Neil or Colleen update if they can.

Thanks everyone for the kind comments and prayers and good thoughts.  Please keep them coming.  Sam is a fighter.   He still amazes me every day.

Margot

Topics: Progress Reports | 23 Comments »

23 Responses to “Here in Philly”

  1. suzy htuchison Says:
    August 21st, 2009 at 11:02 am

    my heart and prayers are with you all.

  2. JT Says:
    August 21st, 2009 at 12:54 pm

    Glad to hear that you are in Philly and got there in time to sleep next to Sam. I’m sure that was very comforting for him and you. He is a stronger guy and will beat this %$#*( disease.

  3. Sandi Queen Says:
    August 21st, 2009 at 1:28 pm

    Margot,
    Just wanted to let you know I am praying for Sam. It’s good to hear your spirits are up a bit, though as a cancer mom myself, I know the “ups” and “downs” that come with different treatment options. For us, CHOP was the place that got my son’s cancer under control. I am praying the same result for Sam – under control, and eventually, GONE!!!

    In Christ,

    Sandi Queen (Jeremiah’s Mommy)
    http://www.caringbridge.org/pa/jeremiah

  4. Colleen Kuhn Says:
    August 21st, 2009 at 2:39 pm

    So happy you made it in early and could snuggle with Sam! Nothing like a hug from Mom and a hug from your son !
    Good medicine for both !
    Prayers to all of you, keep the faith, and please pass on to Neil that Joey and Elizabeth will be lighting candles at the grotto starting this weekend.
    We love you, send you strength and smiles, and here’s hoping this treatment works !
    GO SAM GO !
    Love to all,
    the Kuhn’s

  5. Deborah Roseman Says:
    August 21st, 2009 at 2:54 pm

    Hey former neighbors! Just a note to say I’m cheering for you all from DC. Lots of love and strength to Sam and to you all. You continue to amaze me!

  6. Kim Kow Says:
    August 21st, 2009 at 3:12 pm

    Don’t worry at all about the tickets.I’m glad you got a little snuggle time with Sam. Sam will fly over this hurdle and be laughing at the next game in no time.

  7. Caryn franca Says:
    August 21st, 2009 at 4:30 pm

    Margo,
    I had my laptop in the room the whole time. I would also sit outside the room where that window is at the end of the hall and be on it as well when Nick was sleeping. The awesome parents lounge at the way end of the hall has great morning coffee. Just have to change your booties when you leave the room! I am so glad you are in the process of getting him feeling better!!!

    Caryn, Jim and Nick Franca

  8. Jan Says:
    August 21st, 2009 at 5:41 pm

    Go, Sam, go. Cheering for this to knock down the NB and give you all a break. Have your whole family in my heart and thoughts. Jan

  9. Vicki Adams Says:
    August 21st, 2009 at 6:22 pm

    Hey Margot,
    So glad you got there in time for some Mom/Sam cuddling! Here’s to the MIBG knocking the sh*# out of that nasty NB. We are with you in spirit and prayer. Just saw your mom off…Mimi and I were out front with Elizabeth and Charlie. Everyone hauled a bag out and Elizabeth ran around to make sure she hadn’t forgotten anything. As she sat on the bumper of my car, putting on her makeup, she looked around and said “It takes a village to get Grandma on the plane!” She is a crack up and was a delight to have around. Mimi sends Sam big hugs, us too.
    XO
    Vicki, Bill and Amelia (Mimi)

  10. Lexie Says:
    August 21st, 2009 at 6:53 pm

    Just want you to know we are praying for Sam and your family. May God bless this treatment plan and give you peace.

    Hugs,

    Lexie
    http://www.caringbridge.org/visit/cadenledbetter

  11. Sarah Bartosz Says:
    August 21st, 2009 at 7:53 pm

    By now the MIBG is going and Sam is on his way back to being free of pain and free of disease. Good thoughts, heartfelt prayers, and faithful hope coming your way!!

    Though it is a rival team slogan, it is still a good one (sorry, Neil) — FIGHT ON!

    John, Sarah, Annie and Jack

  12. Lara Weberling Says:
    August 21st, 2009 at 9:47 pm

    Hi all you guys,
    I just want to say I’m thinking about you so much these days! The next couple of days will hopefully fly by faster than you ever imagined and you’ll be out of there before you even know it.
    Praying that the MIBG beats back that NB in a big way. I plan on being there at Sam’s first Brazil game!

    Lara

  13. Lauresa Hollenbeck Says:
    August 21st, 2009 at 11:13 pm

    Praying Hard, In Dallas, tonight, and every day!! Sam, you can do this, little buddy; I just know it. May you feel Jesus’ peace surrounding your hospital room, tonight!!

    Your friend,
    Reese

  14. Silvia Vanni Says:
    August 21st, 2009 at 11:43 pm

    My thoughts & prayers are with you guys. Margot you can have your laptop with you if you keep it away from the middle of the room. I had mine with me the whole time and we were able to see the kids & Steven thru video chat.
    Love & blessing to you all, I know this will work for Sam.
    Silvia Vanni

  15. Angela Rowe Says:
    August 22nd, 2009 at 12:36 am

    Hi guys, so sorry to hear about this all but you will come through it. This too shall pass… Lots of love and prayers- Angela (Madison’s Mom)

  16. Abra McKean Says:
    August 22nd, 2009 at 1:16 am

    Hey guys,

    Praying very hard here in Wa. Island of the Blue Dolphins was one of my favorites too. Margot call me if there is anything you need a special book, a chat, anything anytime…

    With Hope
    Abra

    P.S. 360-649-8685

  17. mooki Says:
    August 22nd, 2009 at 2:28 am

    very happy that you are together and moving forward. sending tons of positive thoughts to sam and all of you.
    love,
    mooki
    toby’s mom

  18. Julie MacDonald Says:
    August 22nd, 2009 at 3:07 am

    Just a quick note to let you know we are thinking of you all and sending our best wishes Sam’s way. You are such an amazing family…..
    lots of love,
    the MacDonalds

  19. Bev Browning Says:
    August 22nd, 2009 at 2:34 pm

    prayers and smiles from across the miles. Love, too!

  20. Uncle Bob Says:
    August 22nd, 2009 at 6:39 pm

    My prayers are always with you guys.

    On the brighter side, now is an excellent time to introduce Sam to some of Philadelphia’s finer dining, can you say Geno’s or Pats for a cheese steak! He will love it, and regardless of what everyone says, no, you can’t get one in San Diego at Applebees!

    Remember, when you order is it “wit” or “wit out”

    Oh yea, Genos won’t cook ya one unless you order in English! LOL

  21. Vickie Buenger Says:
    August 22nd, 2009 at 10:04 pm

    Waiting and envisioning big smiles on Sam’s face as we turn this beast around. Treat yourselves gently and try to be patient. You will be hitting the ground running soon.

    VB

  22. Carrie Palmer Says:
    August 22nd, 2009 at 10:49 pm

    Glad you are together now and I hope things are running smoothly. Im sure the MIBG is already at work kicking the crap out of the disease. Just wanted to let you know we were thinking of you. If you have a date in mind for philly’s game, let me know and I can work on it for you.
    Hang in there- Sam is tougher than everyone else combined.
    Carrie

  23. Dorean S Says:
    August 23rd, 2009 at 1:29 am

    Keeping all of you in my prayers. Such an amazing family, Sam will come through this with flying colors. He is such a fighter and has an incredible support system from family, friends and strangers like me. All of you are in our thoughts and always in our prayers.