Moving On Up

Our little graduate (this was taken back when she had a bump on her head)

Hi all – Looking back at old posts we’ve always provided an update around this time of year as it coincides with the start of Sally’s cancer treatment and this journey we’re on, now FOUR YEARS in. We also realized it’s been almost five months since our last update, so am sure many are wondering how Sally is doing.

In short, we’ve had ups and downs and continue to take it one day at a time as Sally always needs to keep us guessing.

Today, Sally hit a big milestone as we celebrated her Moving Up ceremony finishing pre-school. She’s been taking dance class but we kept her out of the recent recital as we felt it’d be too much for her. Watching Thomas & William rehearse at their performances you could tell she wanted to be up on that stage, so today she finally got to go up there and shake her booty with her school friends. We weren’t sure how she’d handle it, but she went up there first and started waving to everybody and showed no signs of being nervous the entire time. In fact, she loved it. (As a side note, Daddy was too terrified to go up on stage for HIS pre-k ceremony 34 years ago)

Sadly it did come at a price. Once she got off stage she came over to us and we could tell she was off. She was clearly incoherent and could barely stand, and started having seizure activity. We whisked her off to her air-conditioned classroom to get her out of the overstimulating atmosphere.

Sally with her Para, who took amazing care of her this year and was able to track her seizure activity for us. This was after the ceremony and you can clearly see Sally is out of it.

With the school nurse who has been a lifesaver with Sally’s meds and caring for her.

Seeing her up on stage brought out a lot of emotions in us, knowing there were times we didn’t know if she’d get to experience this achievement. In our last update we mentioned that we’d identified a special school for Sally next year and were working on the application. Unfortunately, shortly after that update Sally was hospitalized for ten days with pneumonia, and she missed five weeks of school. This delayed an evaluation Sally required for the application (which we are just now finalizing) and we were put on a waiting list for our top school choice.

Over the last few weeks our school district admitted that they don’t have a school that can accommodate Sally’s special needs. In addition, her current school has been undergoing significant staff changes, so leaving her back may not be an option. As a result, we’re urgently searching for a viable school option that can meet Sally’s unique needs for September.

At the same time, Sally’s refractory epilepsy has kept us on our toes. First of all, we determined that Sally suffers from sleep apnea. Cuz…you know…she needs another ailment. After several weeks of urgent follow-ups we secured a CPAP machine that Sally now sleeps with at night. Secondly, we continued on with the ketogenic diet that we had started just before the last update. We believe it has improved her cognitive ability, however hasn’t had the hoped-for effect of stopping her seizures.

Sally sleeping with her CPAP.

After seeing Sally’s seizures drop from 50/day to very few daily, we saw them rise back up to concerning levels this spring despite the CPAP and diet. A recent blood test showed that her seizure med levels (Onfi/Depakote) were too low. The ketogenic diet has caused her to gain weight, so her epilepsy team decided to increase her levels over the last few weeks. We’ve seen some improvement, however over the last week Sally has been exhausted, not eating and incoherent/unstable at times. After speaking with the team yesterday, we decided that she may be over medicated and are lowering her doses to see if there is improvement, without increasing her seizures. It will take a few weeks to see where all of these changes net out.

Never a dull moment in the Kabel Homestead.

Just like with her cancer treatment, every time we get things stabilized Sally throws us another curve ball. This makes planning for Sally very challenging as she can fluctuate between good periods where she has few seizures and lots of energy, and then rough periods (like now) with increased activity and is not herself from the change in medications. Making sure Sally is in the right school and class next year is of utmost importance and…well…stressful and overwhelming as we need to keep her on an upward trajectory.

As we continue to work out school and her medications, we’re excited to have the cabana again this year. Sally has been begging us to go to the beach and pool all winter. Her first time in the pool she swam the entire length on her own (wearing a swimmie) as if she never left. Although it also exhausted her for two days.

She asked to wear goggles and loves them!

She settled right back into her routine of playing in the sand and at the water table. In some ways its comforting to see her back in her happy place of the last two summers, and how far she’s come since that first summer in 2015 when she was still getting chemo and unable to walk. In other ways it’s sad to see how the other kids her age (and even younger) have advanced so much more in that time than our little girl, and how she relates better to toddlers than a fellow 4-year-old. As we’ve said, we know where Sally’s LGS-like epilepsy can lead, which is why we’re determined to get her meds right, her seizures under control and our little girl in the right school for her needs.

This school year has been wonderful for her development. She’s had an opportunity to make friends and be in a typical setting for her age after being in isolation for most of her life. She’s still a bossy boiler, but is learning to ask questions and relate to others. The other day when she was leaving school early, all the boys came over and gave her hugs and told her good-bye and they’d miss her. (Always the boys, which gives Daddy heart-attacks  that Mommy takes joy in)

These are the milestones we focus on, they warm our hearts and what we aim to (and WILL) build on. 🙂

Please keep Sally in your thoughts and prayers.

Matt & Nicole

17 Responses

  1. Tina Bonitatis
    Tina Bonitatis June 22, 2017 at 7:29 pm | | Reply

    I was so glad to see the update on Sally. She looks amazing but I can’t imagine how you handle all that keeping her looking like that entails. You are truly an amazing family and I thank you for sharing Sweet Sally Sunshine with the rest of us, who don’t have an adorable little girl in our lives. I have three grandsons whom I love with all my heart but would love to have a little girl to love also, so I feel that is Sally. I pray every day for everyone affected by cancer especially the children so Sally is always in my prayers and will continue to be. Update again whenever you can. I will especially pray that you find the right school and the meds. get perfected. Fondly, Tina

  2. Dorothy A Hurt
    Dorothy A Hurt June 22, 2017 at 7:55 pm | | Reply

    Keep it up Sally. You are a fighter! You to Mom & Dad. Have some fun this summer.

    As always, prayers and hugs for you all!

    Dorothy Hurt

  3. Muffin
    Muffin June 22, 2017 at 8:09 pm | | Reply

    She’s so precious! She deserves all the right answers. So glad for her devoted family keeping her path as smooth as possible. Love to you all!

  4. Barbara
    Barbara June 22, 2017 at 8:26 pm | | Reply

    Keep it up Sally! I hope you have a wonderful summer!

    My thoughts & prayers are with you & your family. Hang in there, all of you.

    Love,
    Barbara

  5. Linda
    Linda June 22, 2017 at 8:35 pm | | Reply

    Sally sure looks like she is enjoying her time up on the stage. Your little sweetie is in my prayers.

  6. Linda Jennings
    Linda Jennings June 22, 2017 at 8:41 pm | | Reply

    Always praying for her and your whole family.

  7. Miriam
    Miriam June 22, 2017 at 9:09 pm | | Reply

    Thinking of you guys from Chicago now. Glad to see the update!

    Miriam, Joe and Liliana

  8. Joyce MenDell
    Joyce MenDell June 22, 2017 at 9:59 pm | | Reply

    Loved seeing her in her cap & gown !! 🎉👩🏼‍🎓Congratulaions on your moving up Sally !! I’ve Missed seeing all your pics and milestones but I know it’s been a busy year for you .. enjoy your summer at the beach with your family !! Looking forward to seeing more of your milestones ! ❤️ GOD bless you all ❤️🙏

  9. Ethnea Porter
    Ethnea Porter June 22, 2017 at 10:16 pm | | Reply

    I’m pretty sure we could dig up a picture of you from your pre-k graduation. In fact, I think I recall one of you standing right near Cathleen. (Hiding behind her maybe??) Have a great summer. As always, we will continue to keep Sally in our prayers.

  10. Lillian
    Lillian June 22, 2017 at 10:30 pm | | Reply

    RrMy prayers and thoughts are with you Sally and your wonderful parents You are so beautiful

  11. Jody
    Jody June 22, 2017 at 11:28 pm | | Reply

    I’m guessing that Sally has an IEP…was she in a public school? If so, they are obligated by law to provide her with a “free, appropriate public education,” and if they can’t, they should pay to send her where she can. Of course, the school they choose may not be the one you would want for Sally. I don’t mean to be a Nosy Nelly, but I’ve been a special education teacher in Minnesota for many years, and I’m wishing Sally and your family the best!

  12. Karen
    Karen June 22, 2017 at 11:47 pm | | Reply

    Thanks for your update..you’re ALWAYS in our thoughts and prayers…
    Love,
    Bob and Karen

  13. Dawn Macchia
    Dawn Macchia June 22, 2017 at 11:53 pm | | Reply

    Sally’s achievements and ability to make it through the hurdles are a testament to the incredible nurturing, positive environment that you and the boys provide for her. You are all Super Heroes! We have you all in our thoughts and hope to possibly see you over the summer. We love you guys!

  14. Sister Virginia
    Sister Virginia June 23, 2017 at 10:03 am | | Reply

    It’s always nice to hear from you and to know that Sally – and all of you – have had some wonderful experiences.

    Sorry to hear that there have been some bumps in the road. Sally’s yellow wrist band on my dresser reminds me to pray for all of you every night. I’ll add a prayer to St. Anthony (who always find things) to help you in a search for the right school for Sally.

    God bless.

  15. Geraldine T McGill
    Geraldine T McGill June 23, 2017 at 5:42 pm | | Reply

    Think of her often. Will continue praying for her & the family

  16. Ethnea Runfola
    Ethnea Runfola June 24, 2017 at 12:01 pm | | Reply

    She’s so cute with sunglasses. I pray you find a suitable school for her. Check NY State Education Law regarding special needs children. As I understand the law, what is provided for a special needs child in a public school in the district, must be provided in a school, of the parents choice, in the district. She should be eligible for an Aide.
    Matt, I think I have a picture of your Kindergarten Graduation. If I find it I’ll send it.
    God Bless all of you,
    Ethnea Runfola

  17. Colleen
    Colleen June 26, 2017 at 5:02 am | | Reply

    Sweet Sally Sunshine….you, Mom, Dad, Thomas, and William, too, are all amazing! Your pictures are totally adorable and please thank Daddy for his update. (I have a medically fragile grandchild who is also 4yr and understand completely all that Daddy wrote. Your journey is so similar to Blake’s.) You all have been, and will continue to be, in my prayers and thoughts. Hope is a virtue that will always remain in my heart especially for you and Blake, too. May God continue to bless you and your dear family with wisdom, understanding, patience, and perseverance. Love, Aunt Sarah’s friend, Colleen

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