End of Cycle 7

Hi all – It’s been awhile since we last posted a blog update, there’s a lot to cover so we’re going to let some pictures below tell the story of what we’ve been up to. Overall, Sally did well with cycle seven, finishing up with three days of treatment this past week. This is our recovery week before starting cycle eight next week. I don’t think we ever mentioned it as we learned it while she was in the hospital for the low potassium, but Sally’s marrow was still in remission when they last checked it! If you remember, we were nervous due to all the issues we encountered in cycle six.

The big news with Sally’s treatment is that our Leukemia Team has decided to skip the four days of oral chemo that we typically give her at home to start the cycle. This chemo has been dropping her counts aggressively, so doctors want to give Sally’s marrow and body a break. This is met with mixed emotions by us, any change in her treatment plan makes us nervous. However doctors really want Sally to go a cycle without a blood transfusion, let her have a stretch of feeling good and let her counts fully recover.

We plan to use the next few weeks to put some fat on Sally (Mommy is using avocados, yogurt and bananas through Sally’s feeding tube) and have some fun. The warm weather has really allowed us to come out of “hiding” as we were secluded most of the winter. We’re in search of a beach house that we can hopefully use for a couple days, however has to be within an hour of MSK (not further than Long Beach) as Sally still has treatment. If you have any leads or a house you’re not using for a couple days, please let us know!

So, here’s some photos from the last few weeks…

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Here is Sally trying to pull up to standing, she’s getting really close. She is REALLY on the move, she can get from room to room skooching along on her butt and cruising from object to object on her feet. We really need to keep an eye on Trouble, especially when she’s hooked up to an IV or feeding bag. She’s also trying to declare some independence, Sometimes getting angry at us when we do things for her. We are obviously thrilled with these developments.

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Thomas helping Sally walk with her cart, he asked if he could hold her feeding bag, which he’d never done before.

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Then William asked for a turn…

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As Sally gets older and is moving around more, the three of them are starting to spend more time together.

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Our friends asked us to come out for a bbq and a swim in their pool over in NJ. We hadn’t gone on a family outing like this in months, so was a big adventure for the family. As you can see, Sally was excited.

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This is the first time Sally ever sat in grass if you can believe it. The Brooklyn girl was a bit skeptical about it 🙂

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Here’s Daddy taking her for a walk along the pool.

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Sally loved walking by the creek with Mommy.

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For Mommy’s birthday we went out to dinner and were able to get a secluded seat outside at a nearby restaurant

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Sally Sunshine enjoying eating off of Mommy’s plate.

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Happy birthday Mommy!

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Sally “eating” some birthday cake, or more accurately wearing it. Sally has been making progress eating with her mouth, including pretzels and yogurt. The other day she managed to open up for a spoonful from Mommy!

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This week Memorial Sloan Kettering held their annual prom. They close down the cafeteria, bring in a DJ and throw a dance. In the week leading up to it they have “Promingdales” set up in the clinic where kids can come and pick out tuxedos, dresses, suits and other prom gear which has all been donated.

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Thomas asked for a Sweet Sally Sunshine tattoo.

 

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Dr. Steinherz, the legendary head of Leukemia at MSK and head of Sally’s team posing for a shot with me and Sally wearing a queen hat. She somehow managed to sleep through some of it. It was a really fun event, I grew emotional when we first arrived seeing all these kids having a good time knowing they’d have to go back upstairs to the real world after and thinking about how badly we want to get Sally through this so she can go to her real prom one day.

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Sally with a flower necklace for hair 🙂

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Sweet Sally finishing up Cycle 7

Overall, we are just enjoying being out and about and enjoying life a bit more now that the warmth allows us to be outside around people with Sally. Today we visited a camp out on Long Island specifically for kids with cancer and their siblings. At first we planned to have the boys go once a week, but after seeing all the amazing outdoor stuff they offer that can’t be found in Brooklyn and seeing the incredible staff and systems they have in place we’re seeing if we can figure out a way to get them there more often using the bus service they provide. We also went to an impromptu bbq at some friends out there, another benefit of the warm weather, which we plan to enjoy to its fullest.

Please keep Sally in your thoughts and prayers.

Matt

12 Responses

  1. Miriam
    Miriam June 1, 2014 at 9:53 pm | | Reply

    Glad to see you guys are able to get out and about with the whole family 🙂

  2. Susan Petri
    Susan Petri June 1, 2014 at 10:13 pm | | Reply

    So happy to see Sweet Sally Sunshine doing so well and so many photos with her smiling!! We have a beach property but it’s down on the New Jersey shore close to Atlantic City. Perhaps later in the summer when you can be further from MSK we can offer you some times at the Jersey shore!! You are in our thoughts and prayers hang in lhere !!!

  3. Sandra
    Sandra June 1, 2014 at 10:14 pm | | Reply

    So very happy that you are enjoying some “normal” in your life. Wish I had a summer house for you. Pictures are great, William & Thomas really adore Sally. You are a wonderful family and my prayers and good thoughts will continue for you. Thanks for posting and giving us updates.

  4. Kristi
    Kristi June 1, 2014 at 11:15 pm | | Reply

    Wow sally is growing long legs. I like the yellow! Happy birthday Nicole, mine was May 7th. I am glad to see you had some time to celebrate. Was that a birthday cake or pie? Thanks for the update. All my love to you and the entire family. Go Sally!

  5. Shannon aronson
    Shannon aronson June 1, 2014 at 11:35 pm | | Reply

    Love the pictures! Amazing how even good news brings anxiety but hopefully you can use the quasi-mini break to enjoy more family time. Love you. Wish I had a beach house for you…

  6. Kristen Halt Wells
    Kristen Halt Wells June 2, 2014 at 12:19 am | | Reply

    I just LOVE this posts! A picture says a thousand words, and they absolutely do! Everybody looks so happy and there is just a sense of peace about them…. I am so glad that you are all getting some much needed time out! The warm weather, fresh air, and SUNSHINE is just what yall needed!

  7. Bob and Karen Hoppe
    Bob and Karen Hoppe June 2, 2014 at 7:57 am | | Reply

    So happy to see you can take advantage of a few “normal family moments”…HOORAY!!!!! Keeping you in our thoughts and prayers always….

  8. Geri mcgill
    Geri mcgill June 2, 2014 at 3:17 pm | | Reply

    I find your postings informative, touching & ohh so emotional. She has a prominent place on my prayer list

  9. Sharon R. Kabel
    Sharon R. Kabel June 2, 2014 at 4:31 pm | | Reply

    It was great to have a chat on Nicole’s birthday and now I can ponder the photos you have just sent! You are always in my thoughts and prayers. It was great to see the smiles and watch the kids interact since this continues to be a moment to moment challenge for each of you. Love to all, Mom/Gram K

  10. Sister Virginia
    Sister Virginia June 2, 2014 at 6:47 pm | | Reply

    So glad that all of you are enjoying some happy family time with Sally. Here’s praying for many more days like that!

  11. Chrissie Vieira
    Chrissie Vieira June 2, 2014 at 9:29 pm | | Reply

    This post brings tears of happiness to my eyes! So happy to see you all enjoying life a bit. And most of all so happy to hear that Sally is in remission. We pray daily for the Kabel family, and especially your sweet Sally. Love to all.

  12. Colleen
    Colleen June 3, 2014 at 11:02 am | | Reply

    So glad to hear all the good news! Love all the smiling happy family photos. 🙂 You guys are always in my prayers. Hugs to you all… cj

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