Seizures

Hi all – we planned on writing a followup post this week after Sally was released from the hospital last week with an E-coli infection in her central line. We’ve been going back and forth with the team all week about next steps. However, last night we had to rush Sally into the hospital as she was experiencing seizures.

I was attending a fundraiser at the NY Stock Exchange for our friends over at Arms Wide Open Childhood Cancer Foundation, when I felt my phone vibrate as I was meeting some other cancer families. I checked my phone and saw a missed call and a 911 text from Nicole. I called her back and she said she was confident that Sally had just experienced a seizure, where her eyes and head rolled over to her left side and became unresponsive for 15 minutes. She eventually snapped out of it and vomited, but Nicole managed to video some of it so we could show doctors. We agreed that we needed to bring her in and that I needed to rush home.

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Nicole’s text.

We’re getting hit by a Nor’easter here in NYC this week, so with torrential rain comes traffic which made rushing home in a cab a challenge. As I was close to arriving, she called to say that she was experiencing another seizure and we needed to hurry. I got home and we rushed into the city, knowing that calling 911 and an ambulance would land us at a local hospital where we weren’t confident Sally would get the care she needed, and wouldn’t know her past medical history. We called MSK on the way to let the team know to be ready for us, at this point Sally was laying there totally unresponsive and her eyes unfocused and slightly crossed. Nicole and I feared that she may have been experiencing a stroke as it went on for a long period.

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She was frozen in this position, unfocused with her eyes to the left and slightly crossed, completely unresponsive.

We arrived and literally ran through the hospital and up to the 9th floor, who were expecting us and helped get us back to the Urgent Care area. A quiet space with 2 staff was quickly flooded with 10-15 medical professionals working urgently on Sally. She was unstable, her oxygen levels were at 75 (normal is 95+), she was unresponsive and her heart was racing. At this point she was undergoing a seizure that had lasted for 45 minutes. They gave her anti-seizure meds, and then gave her a high dose of Ativan, the anti-anxiety drug that we sometimes use to treat Sally’s nausea which after a few minutes snapped her out of the seizure. Dr. Kobos told me that this confirmed that she was indeed battling a seizure. Cultures were taken, drugs were given and an oxygen mask was used, after working on her for 30 minutes they got her stable. The medical team did an incredible job and had urgency from the beginning. We were told after that they could sense the urgency in Nicole’s voice on the phone, and know she doesn’t typically have that unless its very serious, so put everybody on alert.

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The room was filled with medical staff, representatives from different departments like Neurology, Pharmacy, Intensive Care. This was taken after she was stable and were preparing to take her down for the scan.

We took her down to have a CAT Scan (which looked OK as of this morning) and then were admitted into the PICU (Pediatric Intensive Care Unit). This is where our journey began back in June 0f 2013, we had hoped to never return to this area of the hospital. However we also know we are under incredible care there. Last night Sally was to be woken up every hour to ensure she was not experiencing seizures or any other effects, however she was awake from 12-5am and appeared OK. She is NPO until some tests are done today, so is mostly hungry and grumpy.

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Did not think we’d end up back here.

 

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Sally was stable last night when I left to go home so I could be with the boys in the morning.

Today she will undergo three tests:

1) An EEG, originally it was going to last for 24 hours, but they’re confident it was a seizure so will do for a shorter period to ensure they are using the right dose of anti-seizure meds.

2) An MRI – As we’ve explained in the past, Sally is having issues with her left leg/foot, we think from the chemo. Being that her head/eyes went to the left during the seizure, the Neurologist wants to see if there is anything going on in the right side of her brain

3) Spinal Tap – They will draw a sample of spinal fluid to rule out infection or relapse in her spinal cord that could be causing the seizures.

Initial thinking is the the seizures were caused by the chemo she is receiving, yet another side effect of the out-of-date treatment kids receive. However, the other possibilities of infection, relapse and brain issues need to be ruled out to confirm that.

For now, Sally is being closely observed as she undergoes all of these tests. Last night was incredibly scary for Nicole and I, and sadly Thomas and William had to see it too. Thomas asked about it this morning, which I explained that she had a boo-boo in her brain but we think was fixed by doctors and she was sleeping quietly when I left. Hopefully we get some answers soon so we can address it and continue on with the fight.

Please keep Sally in your thoughts and prayers.

Matt

26 Responses

  1. Colleen
    Colleen October 23, 2014 at 10:20 am | | Reply

    Sending lots of love and healing prayers to Sally and the whole Kabel family. God bless your little fighter.

  2. Aunt Cindy
    Aunt Cindy October 23, 2014 at 10:22 am | | Reply

    I’m so sorry you all had to go through this Matthew. I have been praying for Sally since you sent the text out last night and will continue. If you need ANYTHING, please ask…I can be in the car and in Brooklyn within an hour…I love you guys so much!!!

  3. Susan Petri
    Susan Petri October 23, 2014 at 10:40 am | | Reply

    Im so sorry Sally is now plagued by seizures and equally sorry that the boys witnessed their baby sister in such distress. Im sure it was so scary. Sally is on n our prayer chain. I am going to go to the Shrine of St. Carherine Drexel to say a prayer for Sally. She has been known to produce miracles!!! Hang in there mom dad and Sweet Sweet Sallly!!

  4. Janice Savage
    Janice Savage October 23, 2014 at 10:46 am | | Reply

    Sweet Sally is always in our thoughts and prayers! I truly hope that she is ok, and I hope that you guys are hanging in there too!!!

  5. Barbara Zobian
    Barbara Zobian October 23, 2014 at 10:48 am | | Reply

    I would like to drop off a soft blanket and pillow of you Nicole…would that be ok…

    1. nicole kabel
      nicole kabel October 23, 2014 at 12:19 pm | | Reply

      A blanket would be great. I like snuggly:-) thank you.

  6. Katrina
    Katrina October 23, 2014 at 11:22 am | | Reply

    Thinking of Sally and you all!

  7. Sharon R. Kabel
    Sharon R. Kabel October 23, 2014 at 12:19 pm | | Reply

    You four are unfortunately learning a great deal about emergency medical care and I pray that you can also gain as much inner peace to sustain you as these traumas continue! You are amazing parents and an amazing family. Special prayers for Thomas and William. I love you all and care about all who care for Sally – family, friends and staff! Mom

  8. Shannon aronson
    Shannon aronson October 23, 2014 at 12:36 pm | | Reply

    I broke down on the street when I read this. I can only imagine how scared sh*tless you guys must have been during this. How absolutely helpless to watch your baby like this. Of William and Thomas having to witness this – how scared they must be. I hate cancer. I hate the treatments. I hate the price all of you have to pay and what cancer has taken from your life. You and Nicole are the most amazing parents and my thoughts and prayers are with you always. You have had more thrown at you than most have in a lifetime. My heart is with Sally, you guys, the boys and everyone in your support system. Sending love, prayers, positive vibes and thoughts your way. Xoxoxo Shannon

  9. Joanna Soban
    Joanna Soban October 23, 2014 at 12:48 pm | | Reply

    My Thoughts and prayers are with Sally and your entire family. Incredibly strong, she’s a little fighter. We love Sally and pray for her her healing.

  10. Tessa Martin
    Tessa Martin October 23, 2014 at 1:55 pm | | Reply

    Sending love & prayers from the UK.

  11. Tony Stoddard
    Tony Stoddard October 23, 2014 at 2:08 pm | | Reply

    Always praying for your precious Sally and your family my friend. Tony

  12. iLIANA
    iLIANA October 23, 2014 at 3:04 pm | | Reply

    I am sending hugs and prayers all the way from CT….

  13. Sandra
    Sandra October 23, 2014 at 5:32 pm | | Reply

    Prayers and positive thoughts for Sally and all of you. May God guide the hands of the staff of MSK.

  14. Tobiesharris Harris
    Tobiesharris Harris October 23, 2014 at 5:45 pm | | Reply

    May your warrior baby girl prevail against that awful leukemia. She is quite the little fighter, as are all of you who love her. Prayers to all of you.

  15. Jeanine
    Jeanine October 23, 2014 at 6:00 pm | | Reply

    You are always in my thoughts and prayers. I know how scary seizures can be. I feel for you!
    Love to all.

  16. Denise Nofi
    Denise Nofi October 23, 2014 at 6:20 pm | | Reply

    I am very happy to hear that they have Sally stabilized and she got some rest. I continue to pray for her and all of you as you endure such dreadful times. I can’t imagine your feelings throughout this. God Bless you all. <3

  17. Andrea
    Andrea October 23, 2014 at 7:33 pm | | Reply

    Praying for sweet Sally and all of you.

  18. Giusy Bono Peluso
    Giusy Bono Peluso October 23, 2014 at 8:52 pm | | Reply

    Sending lots of love and healing prayers to Sally and the whole Kabel family.
    God Bless your little fighter. Xoxoxoxo to Sally

  19. Donna Mixon
    Donna Mixon October 23, 2014 at 10:03 pm | | Reply

    I have been following Sally for a few months now. She is so precious. I’m so sorry to hear of this new issue. I am praying for all of you.

  20. Daisy
    Daisy October 23, 2014 at 10:15 pm | | Reply

    Reading this post brought back some memories of when my son had a 45 minute long febrile seizure. It was the most heart wrenching thing I’ve ever had to experience and the longest 45 minutes. I can only imagine what Nicole must have been going through as she was the one to witness the seizure first hand. May God continue to give you strength and patience and may your love for each other continue to sustain you as you face more tests, and another waiting period to figure out the cause of the seizures. My St. Jude Novena is being prayed for a few people including Sally. Sending positive thoughts, many prayers and much love your way.

  21. Ellen Moliskey
    Ellen Moliskey October 23, 2014 at 11:36 pm | | Reply

    Hugs and prayers from Upper Michigan. May the Lord hold fast to Sally and to you too.
    My mother is a cancer survivor and my brother in law was just diagnosed with it.
    Cancer is such an ugly monster. It is of the devil, but allowing God to work in our lives to bring us hope through suffering, shows strength through faith. Trust Him to be a refuge for times of trouble.

    Trust God, my friend(s),
    and always tell him
    each one of your concerns.
    God is our place of safety. Psalm 62:8

    My body and mind may fail,
    but God is my strength
    and my choice forever. Psalm 73:26

    In the day that I called You, You answered me, and You have increased the strength of my soul. Psalm 138:3

    Be strong, all who wait with hope for the LORD, and let your heart be courageous.
    Psalm 31:24

  22. Michele
    Michele October 24, 2014 at 9:11 am | | Reply

    Thinking of you all and sending you lots of love. Sally is so strong, as you and Nicole are. xoxoxo

  23. Sister Virginia
    Sister Virginia October 24, 2014 at 9:12 am | | Reply

    Have everyone praying for all of you. Hang in there!!!

  24. Maria Carioscia
    Maria Carioscia October 24, 2014 at 4:43 pm | | Reply

    Ww are praying for her, she is in our heart ❤️. She is s strong fighter and this is no challenge for her .. She will get through it
    L❤️ve you presiouse Girl
    Feel better

  25. Lisa
    Lisa October 25, 2014 at 8:47 am | | Reply

    Prayers being offered for your family in Kansas City!!

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