The End of Infant Leukemia Treatment

Sally with Dr. Kobos just after we thanked her for saving our little girl's life.

Sally with Dr. Kobos just after we thanked her for saving our little girl’s life.

Hi all – Over two years ago, and several times in between, we didn’t know if we’d ever get to write this blog post. Sally had just been diagnosed with a rare form of Infant Leukemia that had a dismal survival rate. Today, here we are, Sally just received her last scheduled dose of chemo, and is officially considered post-treatment. Today brings a plethora of emotions – excitement, happiness, nervousness, fear, guilt.

Until this morning, we had thought that Sally had already had her last dose of chemo. It has taken over three weeks and three antibiotics to get Sally’s pneumonia under control, the team decided to cancel the final two days of chemo she was scheduled for since her immune system was already taxed. This brought mixed feelings, happy we could skip the chemo but in a strange way sad that we wouldn’t have the closure that comes with passing a finish line.  We all came in today as a family for Sally to get her bone marrow aspirate, the official end of treatment, to get some sense of closure. However we were surprised to find out that she would get one final dose of chemo in her spine. As Nicole said, it was meant to work out this way. When meeting with Dr. Kobos we had some questions about post-treatment care, and I found myself crying, the building emotions of the last few weeks finally coming out. I looked at her through tears and just said “thank you” for saving Sally’s life, stopping her in mid-sentence as she was answering a question for Nicole. We all got up and shared a hug, getting that final closure we needed.

So what happens now? A lot of Sally’s restrictions have been loosened, we can start slowly transitioning back to “normal”. Because she still has the port in her chest, we still have to be somewhat cautious and bring her in with any fevers for the next few months. She’ll return to MSK monthly for blood checks, and will get a bone marrow aspirate every three months.

Other than that, the main focus of treatment now switches from killing cancer to healing her body from two years of intense chemo. Sally is finally walking, a major milestone in this healing process. Another major challenge will be getting Sally to eat by mouth instead of her feeding tube. Because she never really ate before she was diagnosed, and has barely eaten in the two years since, she doesn’t possess the oral muscle strength for eating. She also doesn’t have much of a desire for it. Transitioning away from the feeding tube will take some time, we are slowly phasing out her anti-nausea meds, and hope her tastes and appetite will improve.

We’re in the middle of testing to determine what caused Sally’s aspiration pneumonia. The last test was inconclusive, we couldn’t get her to eat or drink as she was terrified of being in the exam room. A few weeks ago she was terrified to be in the dentist office while the rest of us were getting our teeth cleaned, our little girl simply is scared of any hint of a medical atmosphere after everything she’s endured. We can’t blame her.

We’re still awaiting results from her bone density test last month to determine if she will require further treatment for bone weakening from the steroids.

As you can see, Sally’s story isn’t over, we’re just starting a new chapter. Not just Sally, but all of us. This week we booked two trips to Buffalo and Florida for this fall after doctors cleared us for travel. These are our first family trips in over two years, off to see friends and family of which many haven’t seen Sally since she was an infant. We’re also looking forward to some much needed down time as a family, and will be ending the trips with a visit to Disney World.

As we were leaving MSK today, we saw Dr. Steinherz. I went up, shook his hand and thanked him, not sure what else to say to someone who saved my little girl’s life. Nicole yelled “We love you” over my shoulder. He walked away and we noticed an upset woman following him, she had the look we know all too well of someone who received devastating news. A few minutes later she came up to us and revealed that her son had just been diagnosed with Leukemia and was unsure of where to have him treated. She heard what we said to Dr. Steinherz and wanted to ask us about it. We told her of our experience at MSK and that we too had to make the same decision two years ago. We gave her our contact info and as she walked away, I hugged her and told her whatever decision she makes is the right one, and to never second guess any decision she will make in this battle.

We saw lots of friends in this visit, all excited for Sally, but that encounter with the mom has stuck with me all day. It brought to life those early days, and made me revisit what we’ve been through. In the end, I’ve decided that it was a sign. Maybe it was a sign for the mom that MSK was the right place for her, we agreed that it might be. But I think it was a sign confirming that Nicole and I are meant to support future families battling childhood cancer, and continue battling to secure better treatments for these kids. I’ll continue to run the Childhood Cancer Dads Support group online, and we’ll both help the foundations we’ve grown to see as our extended family in any way we can.

We encourage all of you to Go Gold for kids like Sally this September and help us raise awareness for childhood cancer research. Kids shouldn’t have to endure what Sally did and will continue to deal with the rest of her life.

So this is it. We’ve crossed the finish line in the marathon we’ve been running for two years. We are so thankful for the continued support – our doctors, our nurses, all the staff at MSK, our therapists, fellow cancer families, the organizations that supported us, our employers, coworkers, our neighborhood of Bay Ridge, family, friends, those who sent meals and donations and all of you reading this. We could not have done this without you. I’m crying writing these final lines, overcome with the love you have all shown Sally these two years. You will always be family to us, never hesitate to say hi or introduce yourself, we want to put faces to the support we’ve had and thank you personally.

And to all the families we’ve fought alongside, we are proud to count ourselves among you. You have shown us the extremes of love, support and determination. Each of you will continue to live in our hears for the rest of our lives, the memories of those we’ve lost at the forefront of our minds forever.

We will still continue to share updates on Sally from time to time, in the meantime we’re going to begin the transistion to the next phase of our life. Please wish us luck.

And please keep Sally amd all the childhood cancer families in your thoughts and prayers. Thank you all, we love you.




37 Responses

  1. Barbara Solomon
    Barbara Solomon August 14, 2015 at 7:31 pm | | Reply

    I’ll continue to mention Sally ‘ s name at services each week, praying for a “refuah sh’lemah”, a complete and total healing of her body and her spirit.

    You are the awesome-est parents!

    Love you, Barbara

  2. Daisy
    Daisy August 14, 2015 at 8:12 pm | | Reply

    <3 <3 <3 <3 sending love to each of the Kabels most especially Sally sunshine. Sally and family you will continue to be in my prayers. Enjoy your trips and as you transition into the next phase on your journey know that you are still being lifted up to make it through this next phase. I know we all will have a special place in our hearts for Sally and look forward to news and strides when you can share.

  3. Eileen
    Eileen August 14, 2015 at 8:16 pm | | Reply

    God bless your beautiful family!

  4. Robin Russotto
    Robin Russotto August 14, 2015 at 8:19 pm | | Reply

    God bless Sally. I will keep Baby Sally n your whole family in my Reiki prays as I now do sessions with the masters. I have been keeping up with Matt blog n my friend has help me print pictures from the computer so we could keep them in our circle when we do healings. Mis u Nicole n I hope to meet your family when we get to come to N.Y. Take care hope u hear nothing but good new from now on & also have a great summer with your family. Namaste

    Love Aunt Robin

  5. Randy
    Randy August 14, 2015 at 8:21 pm | | Reply


    Thank you for sharing Sally and your family in such a heartfelt, eloquent way with visuals….you are truly a beautful and awesome family-:)!!

    Randy and family

  6. Karen Hoppe
    Karen Hoppe August 14, 2015 at 8:25 pm | | Reply

    Thanks for your wonderful writing and updates…our prayers will always continue for you and your family…we love you all….

  7. Laura McKenna
    Laura McKenna August 14, 2015 at 8:26 pm | | Reply

    What a wonderful and terrifying feeling you and your family must be experiencing, I can’t even imagine. I have been following Sally and am so happy to hear this news. You and your family will continue to be in my prayers. Best of luck.

  8. Pam Brake
    Pam Brake August 14, 2015 at 8:26 pm | | Reply

    I am one of many who fell in love with your precious Sally, and gained much respect and admiration for your entire family. I wish you luck, of course, and a future filled with all that childhood to adulthood is supposed to hold! Blessings to you and your family on the next phase of your lives. I will always look very forward to seeing Sally’s growth, and just her adorable self! Hugs all around!

  9. Lisa DiFiore-Ridolph
    Lisa DiFiore-Ridolph August 14, 2015 at 8:43 pm | | Reply

    Sweet Sally Sunshine is our baby too. Our bond as cancer parents is so strong and never ending. This wonderful milestone is a precious one and as always, I am sharing this joy as I’ve shared all the pain. Relating to it every step of the way. God bless your whole family and I am excited to know that you will be entering into a more “normal” phase of lie. A life so well deserved. Love to you all from all of my heart always. ⭕️❌⭕️❌⭕️❌❤️❤️

  10. Marissa Lesslroth
    Marissa Lesslroth August 14, 2015 at 8:43 pm | | Reply

    Reading this crying. I’m so happy for Sally and your entire family. You did it Sally, way to go!!!

    Wishing you all the best
    Marissa (Gia’s mommy)

  11. Tim B.
    Tim B. August 14, 2015 at 8:44 pm | | Reply

    Can Sally make a brief guest appearance at the Jets game? 🙂

  12. Kay Akana
    Kay Akana August 14, 2015 at 8:56 pm | | Reply

    Your writing is eloquent and heartfelt. Thank you for you for sharing the story of your beautiful girl.
    Blessings to your family, enjoy your much deserved vacations!
    Continued prayers xo

  13. Zedra
    Zedra August 14, 2015 at 9:18 pm | | Reply

    Continued prayers for Sally and all the family on your new journeybless. God bless

  14. Scott
    Scott August 14, 2015 at 9:25 pm | | Reply

    I don’t have enough words to describe how impressed I have been by your entire family throughout all of this. Even on the periphery it has been truly amazing to watch how you all battled in the face of incredible adversity. So happy to be reading this post and wishing all of you good news and health.


  15. Lindsay Britt Bell
    Lindsay Britt Bell August 14, 2015 at 9:30 pm | | Reply

    Congrats guys. I can’t imagine what you must be feeling. But following you on this journey for two years I know I am feeling relieved and hopeful. I have a beautiful 2.5 yr old girl and everyday I look at her and think of Sally. Of course I will continue to keep all of you in my thoughts and prayers. Here’s to a beautiful future!

  16. Ashley
    Ashley August 14, 2015 at 10:11 pm | | Reply

    I’m not sure how I came across Sally’s story, but it was a long time ago and I’ve been following ever since, never scrolling past an update. I’ve never met you, and I probably never will, but I feel such pride and excitement for you as if you were my own family. Reading through everything you’ve written and endured, watching Sally walk, and seeing other little girls wearing her nail polish has touched me personally.
    There is no doubt for anyone who has followed that Sally was born into one of the most supporting, selfless and strong families I have ever seen. Battles are never easy, but the feelings that triumph brings outweighs the pain in the end.

    Your family has touched my heart from many states away. I had tears in my eyes reading this tonight. Your fight to not only save your daughters life, but to stay strong in a marriage and as parents to two gorgeous children, is an inspiration that I hope has an impact on anyone struggling with even the smallest of challenges.

    You are a blessed family, and you have blessed all of us who have had the privelage of getting to know you during this journey. Thank you for sharing, even during the most trying times.

    1. Ashley
      Ashley August 14, 2015 at 10:17 pm | | Reply

      I wish I could edit this, I meant to say two other gorgeous children (as well as the beautiful Sally)!

  17. Jane Connor
    Jane Connor August 14, 2015 at 10:15 pm | | Reply

    It’s so beautiful and inspiring to see your dedication and concern for others. We’ve all been blessed to be beside you, to see your amazing Sally, your boys, your love for one another. There’s so much I wish I could convey here but I will say that we will all be going gold, continuing to support anyway we can. Much love to each of you, happiness and health!

  18. Patti Kiley
    Patti Kiley August 14, 2015 at 10:28 pm | | Reply

    God bless you all as you all go forward together into the new chapter.
    Hugs all around.
    Patti Kiley

  19. Lauren Briggs
    Lauren Briggs August 14, 2015 at 10:35 pm | | Reply

    This is great news! Congratulations! We have been praying for Sally and your family since your first blog. We met you briefly at a blood donor celebration where you spoke. My daughter who was 15 at the time spoke right after you. She received a bone marrow transplant 2 1/2 years ago with her brother being her donor and Thank God is doing great! She had a very rare blood disease Aplastic Anemia. Something you said that night has stuck with me. Emily was literally being kept alive by transfusions. I know this sounds so ignorant but I never really thought about where they came from, we had a private blood drive for our daughter but I never thought there could be shortage. After your speech, our whole family donates as much as possible. Our said she was a happy to be a kid speaking after you because your speech was so great! She said you were a very hard act to follow! You may not realize how much you did for that woman you met today. We were first diagnosed at a hospital on Long Island, I didn’t know what to do or where to turn. Lucky for us one of our friends is one the three guys that founded St. Baldericks. With his help and the help of a doctor a CHOP we found Dr. Boulad, our hero! I remember that first day at MSK wondering if this is where we should be, a mom,her name is Jill, came over to me and said “nobody expects you to be anywhere else” she said she and her husband were physicians and this is where they picked to have their son treated. She said “you’re in the right place”. I hadn’t realized I was so easy to read just sitting there but I guess we all are. We all have FEAR written all over us. Nobody can prepare you for the terrifying journey but having people who understand is such a gift. We just love Sally! We knew she had this! Your boys are so sweet and love the pictures of the boys loving up Sally. You and Nicole have a beautiful family! We are so happy for Sweet Sally Sunshine and your whole family. God Bless You!! We are always sending Sally and your family prayers and everything positive!!

  20. Sandra
    Sandra August 14, 2015 at 10:48 pm | | Reply

    God Bless Sally and all of you. I will continue to pray for Sally, William, Thomas and both of you. Enjoy your transition. Enjoy life and thank you for sharing your story.

  21. Tessa Martin
    Tessa Martin August 14, 2015 at 11:17 pm | | Reply

    WTG Sally!! You little rockstar you xox The fight is over for Sally (Please God) but the battle for childhood Cancer still continues. Here in the UK, Gold for September is Spreading like wildfire, thanks to parents like you, who share their child’s journey, warts and all. So people, like me (Please God), who have never had any personal experience of Childhood Cancer, learn the truth about what kids have to go through. We then spread the message of the realities of Childhood Cancer raising awareness and donations to fight for our next generation. So thank you for sharing Sally’s fight xox

  22. Dorothy A Hurt
    Dorothy A Hurt August 14, 2015 at 11:31 pm | | Reply

    Sweet Sally Sunshine is a trooper! What an amazing and terrifying journey you all have been through. You all deserve those much needed vacations that you will be taking. Matt and Nicole, I have loved reading everything about your family and the ups and downs that you have experienced. Sally is a special little girl and will continue to follow your story as you navigate through life. Much love to your whole family!

  23. Pam
    Pam August 15, 2015 at 12:45 am | | Reply

    I wish you well as You all continue your journey. Please remember that GOD takes us all the way through. GOD is holding Sally’s hand. Prayers continue.
    Pam (Sharon’s friend).

  24. Marie
    Marie August 15, 2015 at 8:45 am | | Reply

    So beautifully expressed.
    So happy for Sally , you, Nicle and your family. May this new chapter be filled with good health and an abundance of happiness.

  25. Paul
    Paul August 15, 2015 at 12:11 pm | | Reply

    WOW!! God bless–you guys are the greatest-I’ve been following all you’ve been through so far –and believe me you have helped me to keep things in perspective in life–will continue to keep you in my prayers–Thanks and God bless your family–Paul

  26. Sister Virginia Lake
    Sister Virginia Lake August 15, 2015 at 2:08 pm | | Reply

    Matt and Nicole, you have been such an inspiration to so many people as you and your family have walked this difficult road with Sally. As you start another chapter, be assured that all you have met these past two years will go forward with you, rejoicing in Sally’s progress and keeping you in their prayers. The entire Kearney community has been blessed by being a part of your journey and are grateful that you included us. God bless

  27. Sharon R Kabel
    Sharon R Kabel August 15, 2015 at 2:56 pm | | Reply

    Beautifully written , Matt! It reminds me of the little towhead who used to pass out misselets to seniors at weekday Masses! As excited as I am about seeing all of you stepping over this threshold, I join you with with thankfullness and some sense of anxiety. Look forward to seeing you! Love, Mom

  28. Ethnea Runfola
    Ethnea Runfola August 16, 2015 at 12:23 pm | | Reply

    God be with you as you all travel the road ahead.
    Hope to see you in OP in the Fall.
    Love & prayers

  29. Tom and Lindy Redmond d
    Tom and Lindy Redmond d August 16, 2015 at 5:36 pm | | Reply

    Oh just reading this letter Matt brought tears of gladness to our eyes. What a journey. First we thank God for bringing Sally Sunshine through this two year ordeal. We now thank you and Nicole for writing such heart felt letters to all of us many of whom you do not even know. Sally has become one of our family members. We have prayed daily for her and your entire family since those first bleak days. She is one lucky girl to have such loving, devoted parents.
    Our prayers shall continue.
    God bless you all
    Tom and Lindy Redmond

  30. Colleen
    Colleen August 17, 2015 at 9:49 am | | Reply

    So glad to hear you have all finally crossed the finish line. I will continue to keep Sally and the rest of the Kabel clan in my prayers, but for now, enjoy this moment, you all deserve it!

  31. donna
    donna August 19, 2015 at 3:57 pm | | Reply

    Awesome news!!
    I will continue to keep Sally and your sweet family in my prayers.

    God bless you all, always!!

  32. Howard & Mary Jo
    Howard & Mary Jo August 19, 2015 at 8:58 pm | | Reply

    As part of Sally’s Upstate New York fan club, we’ve read every post these past two years. We’ve cried, worried, and celebrated along with you. As a matter of fact, the recent video of Sally walking was the most beautiful thing we’ve ever seen and heard! Please know that as you enter this next chapter of your lives, we’ll continue to hold your family in our hearts. If you have any suggestions for how we can help spread the word about the inadequacy of research & funding, we’d be glad to join the cause. Best of luck to a very courageous, generous family! And: You go, Sally!

  33. Liz
    Liz August 20, 2015 at 9:03 am | | Reply

    I hope you don’t mind that I felt compelled to share this post….since meeting you last year in Staten Island at the Flat as a Pancake Matt you and your whole family have been in my thoughts and prayers. I cheer at every victorious milepost you guys have passed and I have cried at each setback. My hope for you all now is healing of body and spirit and many many posts of joyous occasions for you all. I look forward to watching Sally grow….from her fierce determination I just know she will grow to be a most special person who will change all of our worlds for the better. Bless you all

  34. theresa butler galimi
    theresa butler galimi August 21, 2015 at 8:19 pm | | Reply

    Please know you are in my Prayers and thoughts daily. May God Bless all you you, always

  35. Carol
    Carol September 2, 2015 at 4:44 pm | | Reply

    Congratulations Sally! Good luck to you and your family. Enjoy your next chapter in life and please keep us posted on Sally.

  36. Jim
    Jim September 9, 2015 at 5:03 pm | | Reply

    That is wonderful. Congratulations, Sally!

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