Thursday, June 14, 2012

4:30pm on a Tuesday

A few weeks ago, Sam started to have what we thought were "growing pains." He had pain in his arms first, and then later his legs. It was a lot of pain. He was up all night, and he cried a lot.

We took Sam to see Dr. T, and she was all over it. She sent us for an x-ray and told us that if he spiked a fever, he should have some lab work.

Guess what? He spiked a very low fever the next day but it was enough for his very tired parents to take him into the lab. The results were relatively inconclusive.

Sam started to feel better, so we were happy.

Then, after a nice quiet week of sleeping through the night and no pain, he started hurting again. This time, it was the other leg. Oy vey! We went back to our doctor's office and saw Dr. P, our regular doctor. He wanted another lab but not more x-rays. He thought it was probably a rheumatology problem and the labs, in some way, confirmed this. He wrote us a prescription for prednisone and referred us to a rheumatologist at Children's Memorial Hospital in Chicago.

We made the appointment with the rheumatologist, and had all our paperwork sent over there. This was on Friday, June 8th. The rheumatologist then called our family practitioner, Dr. P, and had him relay the following: "Stop the prednisone, and if the pain gets worse, bring him into the ER at Children's and we will see him." Sam had been doing quite well on Friday all day.

Friday night, Sam "got worse" and in the morning we decided that a trip to the ER was our next step. Fortunately for us, Children's Memorial Hospital was at that very moment beginning their move over to the new Lurie Children's Hospital building. That was not the place for us, so we went to our local ER, and they gave us a choice for referral. With no hesitation, we chose Children's Hospital of Wisconsin. They made the transfer papers and we drove Sam up to Milwaukee.

When we arrived, they were fabulous at getting us settled and arranging an MRI right away, even though it was Saturday. Poor Sam was in a lot of pain, but he was great for the whole MRI, which actually ended up being 2 - one for his knees and another for his femurs when they spotted something unusual in the bone just above his knee.

After the MRI, they sent us home. His bloodwork and x-rays were relatively clear, it was only his MRI that was worrisome. The ER staff had talked to the oncologist on call, and he wanted to see us on Monday for a bone marrow biopsy.

The word: oncologist. It made my heart fall through my knees.
Bone Marrow Biopsy - even worse.

Sunday was a "normal" day for us but Sam was still in a lot of pain. Luckily, the ER had given us some much stronger painkillers.

Monday morning we called and Dr. J wanted to see us as soon as we could get up there. We landed at CHW at 11am, and they told us that we couldn't do the bone biopsy on Monday, but that they wanted to admit us for observation.

We got a room in the "HOT" unit - Hematology-Oncology-Transplant. They gave me a lovely tour. I pretty much ignored them. "We won't be here long," I said.

But I didn't really believe that.

Sam's bone marrow biopsy was on Tuesday. It was quick. It went "well."

A few hours went by.

The team came back at about 4:30pm.

Leukemia.

My whole universe collapsed in on me at 4:30pm on a Tuesday.
My sweet little Sammy.

We asked questions. They made plans. A port to be inserted. A spinal tap to be taken. Chemotherapy to be arranged. We sent texts. We made calls. We wrote emails.

And we cried.

Sam was in a lot of pain. He complained. He begged to go home.

Now it is almost Thursday.
Less than 48 hours later, chemo has begun.
Less than 48 hours later, everything has changed.
Less than 48 hours later, "we won't be here long" has become "a month."

Sam has cancer.
Acute myeloid leukemia.
And our lives will never be the same.

65 comments:

  1. I want to send all my love and support to little Sammy. I have known him since he was so small and seeing him over pesach has shown how much he has grown. Please let me know if there is absolutely anything I can do to help Sam, you, and your family. Also, what are Sam's and your full Hebrew names?

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  2. Thank you for being brave enough to share your story because you have a large community out there in cyberspace thinking about your family and praying for you. If Sam is up to it at times maybe he can write some of the posts-- dictate to you, and you type--- that might be fun for him. Here's hoping that they can control the pain, he can be a trooper through treatment and God gives you and your family the strength you need.

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  3. I have been thinking about you guys since I heard yesterday afternoon. It's amazing how fast things change. Everyone here at camp is praying for Sam and we know he will get through this!

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  4. Lindsay and I are sending lots of healing, positive blessings to you all - we love you so much and will be with you all along the journey. Please know that we are here for you!

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  5. People are thinking about you and your family and sending healing thoughts your way from every corner of the world.

    We'll be the ones taking care of the far northwest corner.

    Love you all.

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    Replies
    1. And we'll take the deep south. Of the U.S. anyway.

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    2. We will help with the northwest. Phyllis so sorry to hear about this. You are in good hands and luckily close to family for help and support. Sending hugs and positive healing thoughts for your whole mischpacha.
      Xoxo

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    3. I've got the NY region covered!

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    4. And we've got the cornfields of PA, SoCal, and the LoneStar State covered.

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    5. Healing thoughts coming your way from Florida! I will be thinking often of your family!

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    6. Mid-atlantic. And the complete territory of my heart for you Phyllis and family. Cheering you on. Go Sam Go! Hugs, my friend. Many many hugs.

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  6. My God. Phyllis. I'm so sorry. I just saw Rebecca's post and then saw this. You're all in my prayers. Sam could not have a better pair of parents to see him through this. And I can only imagine what a cheering squad his siblings are. Go, Sammy!

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  7. Our love and prayers are with you, and may God bless all of you as you take this journey.

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  8. Our heart goes out to all of you!
    We hope that this song will be your song!
    http://www.youtube.com/watch?v=ihGCj5mfCk8

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  9. We are so sorry you are going through this. Sending our love and healing prayers your way. We hope that Sam has a smooth and rapid road to recovery. Love, The Shonfelds

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  10. Tell Sam that there are people all over the country and all over the world pulling for him and holding him close.

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  11. I'm so sorry to hear the truth; I didn't wanna believe it, but.... I never met Sammy, I met the other kids, but it doesn't meter, I know he is wonderful kid like his parents.
    Dear Rabbi Phillis Sommer, dear Mr. Sommer, dear Sam, all of you, you should know everybody from the community and from the other communities will try to help, everybody from the community will stand next to you,will pray and will expect Sammy to get better!

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  12. Damn. Yuck. Sad. Hopeful. Love. Healing. Strength. Courage. Patience. Fortitude. Lots of prayers and lots of love.

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  13. Sam -

    People like you are my hero! I am a cancer warrior who spends a lot of his free time raising money for families like yours by walking and riding my bike. I do it all so when I hear about stories like this, I know that I can help you!! I have known your Mommy a very long time, and NOW you are my hero! You truly are SUPER Sam! I want you to know that you are not alone!! I have met hundreds of kids just like you! Afraid at first, not knowing what is going to happen...icky treatments that make you feel bad...but I also have seen those children eventually go home and return to their "normal" lives. AML stinks...cancer stinks...but I believe in the resiliency of children and in your wonderful family. You have to promise to keep fighting and I will promise to keep trying to find better treatments and cures for kids like you. I have an all night walk tonight at Stevenson High School where we will be celebrating those fighting cancer and their caregivers, remembering those that cancer has affected, and fighting back by pledging to do more this year! I will be speaking to everyone at the Relay about how they can "fight back." I might just have to talk about you to give them strength...Your Super Sam strength!!

    Don't give up...Don't ever give up! Your parents are saying, "Already Healed!" I am thinking and praying it with them.

    You'll be on my mind...all the time.

    Bradley Egel
    Stay at home dad of 3, cancer warrior, teacher, musician and optimist! (And I have a son named Sam who is almost 6!)

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  14. Sam -

    People like you are my hero! I am a cancer warrior who spends a lot of his free time raising money for families like yours by walking and riding my bike. I do it all so when I hear about stories like this, I know that I can help you!! I have known your Mommy a very long time, and NOW you are my hero! You truly are SUPER Sam! I want you to know that you are not alone!! I have met hundreds of kids just like you! Afraid at first, not knowing what is going to happen...icky treatments that make you feel bad...but I also have seen those children eventually go home and return to their "normal" lives. AML stinks...cancer stinks...but I believe in the resiliency of children and in your wonderful family. You have to promise to keep fighting and I will promise to keep trying to find better treatments and cures for kids like you. I have an all night walk tonight at Stevenson High School where we will be celebrating those fighting cancer and their caregivers, remembering those that cancer has affected, and fighting back by pledging to do more this year! I will be speaking to everyone at the Relay about how they can "fight back." I might just have to talk about you to give them strength...Your Super Sam strength!!

    Don't give up...Don't ever give up! Your parents are saying, "Already Healed!" I am thinking and praying it with them.

    You'll be on my mind...all the time.

    Bradley Egel
    Stay at home dad of 3, cancer warrior, teacher, musician and optimist! (And I have a son named Sam who is almost 6!)

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  15. Covering Sammy, you, Michael and all of your family with giant semi-trailer size loads of good thoughts and prayers.

    Already healed will be our mantra too.

    Much, much love coming to you from Yehud.

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  16. Keeping all of you in my thoughts and sending prayers of hope, healing, strength, courage and comfort. Bust through this like only Superman can, Sam!

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  17. Stay strong. Be brave. Fight. I am thinking of you all.
    Lisa Spewak

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  18. Thinking of you, your family, Sam. I watched two families go through this recently - I can't even begin to imagine the fear and the pain. Those children are now doing well. Refuah shlayma to Sam.

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  19. Praying and sending much love. Refuah Shleimah Sam.

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  20. I have a friend who is married to a man who had a form of brain cancer when he was a child. They have three children. He didn't have a great prognosis and was supposed to be sterile. All that to say, be encouraged! Stay strong. God is the supreme Healer. Phyllis, you always say "May it all be for a blessing" and I pray that this very hard time will also be a blessing of sorts to you and your family. Fight on, Sam!
    -Sara K (it's going to make me publish under my sister's ID)

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  21. Oh Phyllis, my heart is with all of you.

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  22. I don't know you at all, and I certainly don't know Sammy. I found your other blog because I'm launching a mystery series called THE RABBI'S MOTHER, which now seems utterly irrelevant. I am so sorry for Sammy, and I hope that you'll tell him that a stranger in Maryland sends him love, blessings, and healing from Hashem.

    For you, the parents, I send strength. My eyes are closed and I'm praying for you.

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  23. Phyllis,
    The entire world has changed forever. Be strong for Sammy, but allow yourself to accept help, love and prayers. Let those who know you and love you give you support. Cry. Pray. Rail at how wrong this is. And know you are treasured, loved and wonderful.

    Betsy

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  24. Phyllis, Michael, Sam --

    We are sending all our love and strenth to you. Alex and Sammie are up at OSRUI today helping with a bone marrow/stem cell drive for Gift of Life. We are going to find a way to beat this darn thing!!!!


    The entire community is supporting you in every way we can. We love you. Phyllis and Micheal - if you guys need help in ANY way, dinner, laundry, grocery shopping, helping ferry your other kids around - please tell us. We are about 5 minutes from you house and would love to feel like we could do something to make this whole thing easier on you.

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  25. Dear Sommer Family,
    Wishing you all strength, comfort, and support to get through this difficult time. Sam, you have so many people (most of whom you probably don't even know!) thinking about you and praying for your safe healing. May you have a full and speedy recovery... and may all of this be behind you soon.
    Sending love,
    Sari (Pelc) Edber

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  26. Hi,

    I heard about you through another member of the community and they wanted me to read your story. Our lives are very similar although we have never met. The difference is while your journey is beginning ours has finally come to a close. My baby was 7 months old when he was diagnosed with T-Cell ALL. We went in because of chronic ear infections to put in tubes and came out with much more...CANCER! The words hit me like a bus. I felt as if my world had crumbled into pieces that could never be glued back together. The good news is, although I will never be the same because of the this experience...my pieces are back together they just fit in a different way. Today, my baby is 3 years old. They told me he may not survive the night and now as of May 4th this year, he is CURED! We went through chemo, radiation, and a stem cell transplant. We had many moments where we were told we might lose him, and now you could never tell he was ever sick. I am not going to sugar coat it, times will get rough. You will cry, you will laugh, you will want to blame everything and anything...but you will get through this. You will learn how strong you can really be and you will be better because of this. Please know, I am in the area if you ever wanted to talk. Below is the link to my sons caring bridge. Feel free to read it, and I understand if you don't want to read or hear about anyone elses story as well. We all deal in our own ways. But know there are people everywhere praying for your family.


    http://www.caringbridge.org/visit/mightymaxwilliams/journal

    on the right side of the page you will see email author. You can always email me if you ever had any questions or just needed to vent.

    Sincerely,

    A parent of a survivor *Mighty Max*

    Marci Williams

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  27. Dear Sameleh,
    What a brave little guy you are! There is so much love being sent to you! Let all these good thoughts and wishes and prayers be like a snuggly blanket, keeping you warm and safe. You can do it, Superman Sam! :)

    Kim

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  28. Michael, Phyllis, Sam and family-
    My prayers are with you during this difficult journey. I pray for a speedy recovery and send you love, comfort and support.
    Shabbat Shalom,
    Leemor Dotan

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  29. Asher is devastated that his good friend Sammy is sick. "I wish we two were playing right now and watching Kung Fu Panda 2 and eating popcorn. Sammy please get better quickly so I can see you very soon and play again..remember Sammy, we have a name in common..Asher..so we'll always be connected!"

    Our love, thoughts, and prayers are with you daily...we are here for anything you need. Kristin, Alex, Ethan and Asher

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  30. Sam,

    I'm a rabbi who is friends with your mommy and daddy. I live down in Texas. I have two daughters, one who is six and one who is four. Their names are Leah and Michal. They think that you're going to get better!

    Leah had a few ideas about what to do when you get scared or are in pain. She said it helps her when she does push ups or wraps herself all up in her sheets and blankets. I think that she suggested push ups because if you are doing push ups you don't have time to think about being scared.

    When Leah gets scared, sometimes we'll say the words, "Adonai li v'lo ira." We had to say them several times before Leah could say them by herself, but often times we'll say them together. The words mean, "God is with me, I will not fear." Saying that over and over again usually makes us feel at least a little better. I think it's ok to be scared some of the time, but if you get tired of being scared, that might be something to try.

    We are hoping and praying and thinking that you will feel better soon.

    Love, Charlie, Adena, Leah, and Michal Cytron-Walker

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  31. I have tears in my eyes for your sweet family as I read this. When I saw the Facebook post, I wasn't sure how to respond. As I sit here at Froedtert with my mom as she awaits one of her last chemo treatments in her third long round of the last five years, I think of little Sammy just a few steps away. I'm sending you so, so, so much love and hope. I know you have a zillion family and friends in MKE here to help you out, but please know that you have two more in The Hazz and me. We love you!!!!

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  32. From new York - all of our love to all of you - and, let us know if you want anything special from here - we are coming that way twice this summer and are more than happy to bring bagels - or egg creams. And, will definitely bring love.

    Leora, Galit, Doug

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  33. Dear Superman Sam,
    I'm holding you close in my heart and sending you and your family lots of xoxo from New York City.
    ~ Jane.

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  34. Dear Sam,
    I have known your mom a long time. Even though I have not seen her in years you are so lucky to have such a great mom. My the strength of your family and friends keep your spirits up. If you ever need a fun laugh with a very goofy adult please have your mom contact me and I will be there!

    Love,
    Mommies friend Maryn ( from camp)

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  35. Dear Superman Sam,
    You are my new hero.
    Sending you lots of love from the cornfields of PA,
    Rebecca

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  36. Sammy, Phyl and Mike,
    You all are very strong and I love you all soooooo much. You are always in my thoughts, and I know that this won't stop Super Sam. Already healed.
    All my love (and Scarlett and unborn too)
    Becky :)

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  37. Phyllis, Michael, and Sam (and the rest of your family),
    Keep strong, keep praying, keep loving each other. You are in the prayers of so many.
    -Sharon

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  38. Dear Superman Sam,

    I have a friend who also had AML 18 months ago, and she is friends with your parents. So even though we've never met, I feel kind of like I'm on this ride with you. Cancer SUCKS and you can legitimately say that this isn't fair - not that this happened to you instead of to someone else, but that it happens to people at all. The good news is that doctors and nurses have a lot of tricks up their sleeves to kill the unhealthy cells and help grow good ones, and other drugs to help with the side effects of the first ones. Speak up, loud. Tell people how you feel. And do your best to keep your body strong by getting as much sleep and exercise and healthy food as you can tolerate.

    Ask someone to get you the Magic School Bus: Inside the Human Body. It's a great book (and movie) for explaining what all the blood cells are supposed to do when they work properly.

    Stay Super!
    Stephanie Fink

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  39. Dear Superman Sam, you are amazing. You are stronger than you know. You have brought so many caring and loving people together. Your pain and struggle has become everyone's pain and struggle. You are NOT alone. When life seems like it is falling apart, it is falling into place. We do not know why things happen like this, we can only have faith in God that God is there for us and loves us. What looks like a curse can be a blessing when we realize that we learn more about ourselves when bad things happen to us. We know that we are strong, we become stronger in our faith, we know that life is difficult but we can overcome whatever it is and be thankful. So now and in the future Sam, you will fight for your health and for your place in this world. You are like Superman, fighting for "right". Sam, keep praying to God for help and God will answer your prayers. Stay strong and know you are loved by so many!!! xoxo Cantor Lynda, Elliott, Jody, Cheryl, Toni and the animals.

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  40. dear sam,

    I sing mi sheberach at least twice a week and always think of the people in my life I know who are sick and my congregants (and their friends and family) who are sick. i know we don't know each other (i only know of your mom and dad because we're all rabbis) but now I'll be thinking of YOU. I hear that you are a superhero and rockstar and sweetheart-- all qualities that will help you move through this not-so-fun time to come.

    sending you love from new jersey,

    karen (perolman, short hills, nj)

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  41. Sommer Family,
    I love your kids, so let me know if I can do something fun with them. Of course, please give all my amor to Sam and read this to him.
    Con mucho carino,
    Ann (Ellingson) Lay

    Hola mi amor! It's Ms. Ellingson! How are the tortugas and ranas? Bien? I hope you're drawing lots of tortugas and ranas to decorate your rooom.

    You know, Macey, our class pet, told me the other day that she missed you. She said she might want to stay with you for a bit. If you would like that, let an adult know and we'll make it happen.

    I hope you're teaching the people at the hospital all the espanol that you know. You know mucho!!!! Plus, you have to be ready for 1st grade. You can always count to 100, or do sumas or restas. You can also write silabas and palabras. Even oraciones! Pupu, perhaps? You can always do a Diario, too. If you would like more homework, you know who to tell.

    I would love to come see you and find out personally how the ranas and tortugas are doing. Again, if that's something you would like, you tell an adulto.

    Bueno, te quiero un monton y que sigas portando bien como siempre.
    Te mando millones de abrazos y cosquillas,
    Ms. Ellingson

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  42. We add our prayers and support to this outpouring of love. And we will be the first to provide a live frog and turtle when Sam and you are on the other side of this ordeal!
    El Nah Refah na lo!
    Judy Chessin and Michael Cook

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  44. Sammy is one of the most amazingly wonderful, stubborn, beautiful children I have ever had the priviledge of knowing. He is a fighter. Combined with all the love this world has to offer, I have faith that he will be running circles around phyl and michael in no time! I love you all more than words can express. I wish I could protect you from this evil or take away the pain. I will continue to send my prayers and positive energy up into the universe. My heart is with you, even if I can't be....
    ~Jess Schrinsky

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  45. Oh...words are hard to come by, as I read this. Hugs would be better, but it will have to be virtual. So many healing thoughts and prayers coming to you and Sammy, and all of you...Superman Sam indeed, and Super-sibs and parents...Trust, courage, faith, and hope. And lots and lots of love and prayer.

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  46. As Shabbat descends, I just wanted to wish you all as much gentleness as possible in the days ahead. May you continue to feel the love and support flowing in towards you. And please know that Cherry Hill, NJ is also sharing in the prayers for healing and shleimut as speedily as possible.

    Jen Frenkel

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  47. I'm so sorry your Sammy has to deal with this. It is terrible and sad and scary I am sure, please remember to be gentle with yourself during this time. If it's ok with you can I blog about your Sammy over at YLMB, extra prayers are always good right?

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  48. Phyllis. As I head to temple this morning, I will say a prayer for your Sam. It is my son's bar mitzvah next week. And we will serve as ushers today and as we sit through the service, I know I will be actively praying for your guy. Please know my thoughts and prayers are with your family on this day.

    As you begin this terrible journey.

    Hold each other close.

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  49. Dear Sommers family,

    I am the (part-time) cantor where Jonathan Siger is the rabbi. Praying for Sammy's complete healing speedily in our day. I just walked a half marathon (my second) with The Leukemia & Lymphoma Society's Team in Training (TnT) program. We raise funds for the society through getting sponsors for our training. TnT has raised over 1 billion (with a "b") for LLS. Even though I don't know you, I now have a new reason to participate in TnT again.

    May your sweet Sammy soon regard this challenge as a distant memory.

    Renee Waghalter

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  50. i just read the past blogging on this whole couple of weeks. and I cry with you- and I look at the pictures of Sammy's strength, and I smile for the good moments. And I promise to say a prayer every single night for him and for all of you - and I love that you are blogging so that all of us who love you can feel like we are with you in a way-- and I want to know WHERE DO I GET MY TEE SHIRT. I WANT ONE AND BETSY'S FAMILY WANTS ONE, AND I LOVE YOU- ALL OF YOU !
    SHARON MORTON

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  51. I just found this new blog via FB but have already been keeping Sammy and all of you in my misheberach. We've never met in person, Phyllis, but I feel like you are a friend. Sending love and prayers. -jean

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  52. Hi Superman Sam!
    Your daddy and my husband are friends. And guess what- I am friends with Kristin Pressman and your kindergarten teacher! I feel like I know you already. I am busy hunting for my Superman t-shirt (my closet sometimes eats things and I have to wait for it to spit them back out) but while I am hunting, I am thinking of you and sending super strength and love!

    Laurie Weil

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  53. Oh, oh, oh, Phyllis. Holding you and Sam and your family with every fiber of my being.

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  54. Thinking about you and your family all the time and praying. Starting these posts from the beginning and will read them all.

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  55. So...we have children who just finished 4th grade in Mrs. Castro's class together, but, we don't know each other well (for this I am sorry). I didn't even know your family existed when your older son and our older daughter were in Kindergarten (they had different teachers), but, I was blown away when someone e-mailed me a copy of a letter Phyllis had written supporting a peanut-restriction for children with severe food allergies (like our older daughter). It was beautifully written -- embracing an environment that allowed all children to be safe and talked about the importance of teaching compassion through actions. The letter moved me to tears -- AND SHE DIDN'T EVEN KNOW US! While we haven't had the fortune of getting to know your family, I feel like Phyllis is a friend.

    We are sorry Sam is sick and that your family has to face this challenge. We are holding your family in our thoughts and wishing you all superhuman strength and courage. As we have a 7-year old son, we have NO SHORTAGE of superhero wear, which we'll wear in Sam's honor!

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