Thank you.
Thank you for your selfless act of hope and belief and future.
Thank you for giving us 77 wonderful days of hope and blessing.
It's not your fault that it didn't work.
It's really not. I can't imagine how it must feel to know that you made this selfless donation...and it didn't work. So I want you to know that it's not your fault. Once the marrow left you....it just wasn't up to you any more. You did your part…you joined the registry and you answered the call. We are so very grateful.
Your supermarrow was just no match for Sam's ninja leukemia, which has mutated and changed to defeat even your miraculous gift.
We can't control life and death.
Even the doctors know that. They tell me that.
But we can, as a wise person told me, control the journey.
We have made the decision to give Sam a journey that is filled with love and light.
The fact that he hates the hospital with a fiery passion is reason enough to keep him in our home as long as possible, and to not take on options that require hospitalization. The fact that our doctors have turned over every stone means that we are not taking on any of the obscure, difficult, painful, and unlikely-to-do-much treatment ideas that have been so kindly and lovingly suggested to us. The fact that we are out of options is a fact that we live with each day. And sadly, our medical team feels much the same way. They hate this just as much as we do. We now use words like palliative care and hospice. There is such pain in these decisions that we know are, ultimately, the most loving and caring we can make. We know our time is growing short...
And so, our dear friend SuperMensch, we thank you for these minutes and hours that we continue to cherish.
We send you blessings and love and strength.
We send you blessings and love and strength.
With love,
Sammy's family
Here are a few scenes from the last two days…noticing that Sam has not really left the couch, except for a slightly traumatic trip to the hospital for a new PICC line...
Here are a few scenes from the last two days…noticing that Sam has not really left the couch, except for a slightly traumatic trip to the hospital for a new PICC line...
Discussing what kind of spaghetti he wants Bubbie to make:
A sweet bright spot in a very sleepy day - Sammy watching a private magic show. Thank you to the anonymous person who set it up and to Randy Bernstein for the lovely moments. He slept almost all the rest of the day...
Daddy is helping Sam to choose a birthday present for Solly. Sam had a plan in mind, and he fully expected to go to Target to acquire the gift. Instead, he chose it online. I am completely blown away by his brief moments of clarity and generosity, thinking of the future for his siblings.
oh my
ReplyDeletesending love and care
I have never met your family but I find myself thinking of you often. I was introduced to this blog by chance and each time I read your words, I am inspired by your strength and love. I would be lying if I didn't say that I log in hoping for a miracle. I pray for Sam's comfort and for peace for your family in this extremely difficult time.
ReplyDeleteSending all of our love!
ReplyDeleteI too have and eight year old named Sam. I gave him an extra hug and a kiss tonight and said a prayer that your Sam could find some happiness and peace. You are all truly amazing!
ReplyDeletePhyllis, Michael,
ReplyDeleteI think of you every single day. I do not know how to express my deep sadness for you all. I remember how carefree and silly we all were in Jerusalem so many lifetimes ago and know, deep in my heart, that you will always find the love, laughter, and light in your lives. Even though one light is being extinguished way too prematurely, this will be the brightest of them all.
I send you my love, my prayers and my support.
B'ahava,
Shoshi
Many years ago,when I first moved to Israel,i was found to match someone and donated bone marrow. Weeks later the woman from the hospital called and told me that at first it was working but then it stopped and the recipient passed away. For all these years I have wondered if the family blamed me or wished they hadn't done the operation. Thank you for this post from the other side. I have always carried with me the thought that he might have lived longer without it. I am praying for Superman Sam and all if you.I am so amazed at how special you are making these days.
ReplyDeleteThank you for sharing, Phyllis. We pray for Sam & for your whole family every day.
ReplyDeletePhyllis, Sam and his siblings are very lucky to have been born to such a wonderful family.
ReplyDeleteThinking of you this morning and every day as you take these steps on this difficult journey. May it continue to be filled with love and light as you need it, and determination and strength as you need that too.
ReplyDeleteThere are just no words. But there is love. So much love for you and your entire family. xoxox
ReplyDeleteSending love and strength and comfort and moments of joy. Max handelman
ReplyDeletesending warmth and hugs to your lovely family. thank you for sharing.
ReplyDeleteI don't know your family personally but have been following your blogs so feel as if I do. Each and every time I read your posts, I find I learn a little more about what it means to be a truly good person and an exceptional parent. My heart goes out to you. Wishing you a miracle but at the very least, joy in every possible moment.
ReplyDeleteYou don't know me, but we share many friends. There is not a day that goes by that I don't think of your family many, many times. I, too, log on hoping for an outcome that will not be. May it give you some amount of comfort that Sam's journey, which you have so poignantly shared, has changed the world. Your story will continue to impact us; we will all fight a little harder to rid the world of this horrible disease, we will all love a bit more, and so much more. Continuing to send you prayers during this most difficult time, more difficult than I can even fathom. Leslie Kastner
ReplyDeleteYour family is in my thoughts. I was at Beth Emet last Friday night and Sam's name was mentioned refuah shlema. We are all praying for you.
ReplyDeleteI've just come across your blog and already feel as if I know and understand you. I lost my mother last week to a terminal form of cancer, and although nothing can compare to loss of a young child with his entire life ahead of him, the loss of a loved one yields the same emotions, grief and pain. I applaud your decisions in Sam's battle- we had many of the same. We had options presented by the doctors, but asked ourselves "what for?" will what she can gain from these procedures greatly increase her quality of life or will she be put through another stay in the hospital and take away from some beautiful days that we can enjoy together. In the end we chose the quality of her days over the quantity of them. We wanted to avoid hospitalization as well, and kept her at home as much as we could. It was scary at first to use the word hospice- but we soon learned that it doesn't mean its the end, it simply means we're planning to make her as comfortable and content as we can, at home, surrounded by the ones she loves. Stay strong for your little boy, he's so strong, and be comforted in knowing that although cut too short, you are providing him with the best life possible, filled with lots of love and memories.
ReplyDeleteI can't begin to fathom your pain. I hug my 3 boys every day and say a prayer with each hug for your pain, Sammy's fears, and your future. I've never met you or your family (we have a friend on common) but I send you all my love and hope it comforts you for a brief second.
ReplyDeleteDearest Phyllis, Michael, Marilyn & Josh, The first thing I think about every morning is the pain and bravery you experience every day. I hope my love and prayers for all of you help in some small way.
ReplyDeleteHi Sam:
ReplyDeleteWhat did you pick out for Solly's birthday? I bet you really did a fine job picking a gift, considering you are a boy - sometimes, older brothers know how to pick a toy out better than parents. Was the magic show good? Did the magician pull things out of other things and did he tell you how it did it? My step brother was a dentist who did magic on the side - can you imagine going for a checkup and having your dentist pull something like a dollar bill from your mouth? I hope something makes you smile SOON after your mom reads this to you. - your crazy mystery pals in Ohio, the Lipkin family.
Not our fault, but still our responsibility, caring for each other. So wonderful that you let us into the intimacy of your family as you find your way through the dark, and the light. That such a fragile child can shoulder our hopes and faith!
ReplyDeleteI am not surprised that he has moments of generosity and showing love for his siblings - the essence (the chein) of who he is has not changed. He is being raised by loving and giving parents who have taught him about giving. This is who he is and he will continue to give to you and everyone else for the rest of his life; as will his siblings as well.
ReplyDeletePhyllis and Michael, you have raised a giving and loving child in Sam. I think of him as I go about my day and hold him close to my heart. Much love to you and the children and to the marvelous Sam.
ReplyDeleteYou are a remarkable family, and more so due to the struggles you are going through, yet your concern for the donor and others shines through.
ReplyDeleteI wish you tender moments with Sammy, and hope the memories will forever be etched in your hearts.
You are all so inspiring, and Sammy is such a brave young man, such a selfless young man, as are the two of you, his parents.
I will daven for you all, each day. Thank you for sharing.
You are a loving family: loving parents who have created loving children. I think of you often. Thank you for putting love out into the world--may the world always be there to turn around and love you back.
ReplyDeletehow blessed Sam is to be wrapped in such kindness and love… how blessed you are to be recipients of his light. I'm so sorry the transplant did not work as you had hoped… Thank God for goodness in the world, for every mensch who dares to be generous, to hope, to offer… no matter what.
ReplyDeleteWishing you fortitude and peace. Sending love from our household to yours. The Millers
ReplyDeleteI have never met your family but have been thinking of your son. I came across your page as I was searching for picc line care (I have one). The story of your son is heart wrenching. What a brave family you have. I pray Hashem keeps your son comfortable and gives your family strength.
ReplyDeleteI'm sending my condolences to the Sommer family...I love you all and praying that God heal your hearts...I'm so sorry for your loss...
ReplyDelete