Overall, A Good Day


Sally in her new FDNY shirt, who made a generous contribution to her.


Toasty little girl.


Being Silly with William.


Playing with Thomas’ robot by the tree.

Hi all – we had a good day today, much needed after a string of weeks with challenges. First off, Thomas is back to his old self after having the flu. As last week progressed, he improved each day and finally returned to school on Friday. We had a scare last night when William woke up with a fever. We prepared for the worst but was back to normal this morning, a bullet dodged.

Sally is also doing great today, all she had was PT and a check of her counts at MSK. She does have an ear infection developing and some nausea from the Tamiflu, but is in VERY high spirits. Seriously, she’s been the Energizer Bunny being very playful and scooting on her butt all over the floor.This after last week when her counts dropped and needed an unplanned midweek blood transfusion. Even now she’s on the floor next to me smiling and playing, although she’s forgotten her bed time as of late.

Here’s video of her in ballerina mode last week: Click Here

Last week one of our Leukemia doctors, Dr. Kobos, asked Nicole, “So what is this I hear about you guys coming in on Christmas?” We often forget that many at MSK follow this blog, so word must have reached the team about our disappointment on having to spend Christmas Day at the hospital. They are working to potentially have us bring Sally in on Sunday so she can get her first day of chemo then, which would have her there Monday and Tuesday, Christmas Eve, instead. This would mean we wouldn’t have to come in Christmas Day. Obviously as we’ve learned with Infant Leukemia things can change. If it works out, great, if not we’ve already accepted that we’ll be there on Christmas and have already decided to make the best of it. While at the hospital one of us will take the boys to see some of the sights in the city, like the Rockefeller Tree, the train exhibit at Grand Central, and Nicole wants to finally show William the dinosaurs at the American History Museum. Again, make the best of it.


Christmas Tree on the Pediatric Floor that we’ll be spending plenty of time gathered round next week.

The other piece of good (great, amazing) news is Cami, after going through a marrow transplant, was cleared today to resume her normal life. She has lived in isolation since Sally was diagnosed which has been difficult on her and her family. The King family can get back to “normal”, and restart their life journey. Her mom wrote about it today, which brought joyful tears to Nicole and I. We couldn’t be happier for them to get back to worrying about the small things.

We also know that Sally still has a long and grueling fight ahead of her. Today we read a study recently released that says treatment for Infant Leukemia is starting to improve and better days lie ahead. However, the study starts out with the current stats of high relapse and failure rates for Sally’s ALL with MLL diagnosis, of which there are only 90 cases a year diagnosed in the United States. Children diagnosed after the age of one year have a 85% 4-year event free survival rate. Those diagnosed under a year like Sally was – 47%. Less than half. A sobering reminder that there are no guarantees in what we’re facing with her, even if we get her through the two plus years of chemo.

Again, its usually in the good (and brief) periods of treatment that the scary stuff creeps into our minds. We can’t ignore it, but can’t dwell on it either, it’s a healthy way to let go of some of the pressure that builds up in us as we go through this. Nicole and I both had a day thinking about it, now we shrug it off and continue the fight as always and look forward to Christmas. We’re really looking forward to next week and spending it together as a family, whether it happens to be home or at the hospital. Honestly, nothing matters as long as we’re together. We need to make these times together count, its more important than ever. Please keep Sally in your thoughts and prayers, as well as her buddy GiGi who is having a rough time with fevers at MSK.


8 Responses

  1. Colleen Jasinski
    Colleen Jasinski December 16, 2013 at 10:42 pm | | Reply

    LOVED the video of Sally! Such a beautiful, sweet, cutie-pie! She made me smile. Lots of love and happy thoughts to you all this Christmas season. Thinking of Sally always and keeping you all in my prayers. Merry Merry Christmas and may 2014 be full of love and light…and more good days than bad.

    Hugs, cj

  2. Missy Quigg
    Missy Quigg December 16, 2013 at 11:13 pm | | Reply

    Praying for both Sally and Gigi! God’s Blessings as you prepared for Christmas

  3. Tammie
    Tammie December 17, 2013 at 7:40 am | | Reply

    Your blogs are so inspiring Matt with your positive outlook. Thinking of SSS and your family during this Christmas Holiday, my heart goes out to all of you…as always keeping Sally in our thoughts and prayers, hoping the beautiful ballerina can be home on Christmas!

  4. Sandra
    Sandra December 17, 2013 at 7:47 am | | Reply

    Thinking of Sally and all of you. Beautiful pictures of Sally and her brothers. Thank you for sharing. Will be praying for Sally, Gigi and all the children going through this horrible illness. Keep positive thoughts and BELIEVE.

  5. Bob and Karen Hoppe
    Bob and Karen Hoppe December 17, 2013 at 8:11 am | | Reply

    Loved the video…Bob will be so proud of Sally and her trumpet!!! Will keep everyone in our prayers…Love to you and your beautiful family…Merry Christmas…

  6. Ashley Hoppe
    Ashley Hoppe December 17, 2013 at 12:27 pm | | Reply

    The video was a great way to start my day, her videos always make me smile 🙂

  7. Sister Virginia Lake
    Sister Virginia Lake December 18, 2013 at 8:56 am | | Reply

    The video was great, Matt. What a great Christmas present for all of your fans. Sally definitely has a mind of her own, Nicole. she will say ‘mama’ and ‘dada’ when she is ready and probably when you don’t have the camera near. Prayers for all of you as you face the good days and bad days together.

  8. Ty Miller
    Ty Miller December 21, 2013 at 9:05 am | | Reply

    Wow, what a cutie! Glad that she is feeling better. She is so sweet, sending happy thoughts and prayers your way!

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