Hi all – after a busy day of tests for Nicole yesterday and a busy work day for me (which I was grateful for the distraction), we were able to connect last night. The latest:
– Sally was miserable early yesterday most likely due to not being able to take in fluids/breast milk prior to being put under for the spinal tap and exhaustion from the events/drugs the night prior. Her mood improved later on after being able to feed her.
– The EEG came up clear, which means the anti-seizure meds appear to be working. Sally will need to remain on these meds for the remaining year of treatment.
– The MRI also looked clear, they feel this likely means the seizures were not caused by the chemo, but also can’t rule it out hence the continued anti-seizure meds. They may also alter her treatment going forward.
– Initial tests on her spinal fluid look good, however definitive results will take some time, so are in a waiting game to ensure these were not caused by a relapse or infection in her spine.
Nicole and I are mentally prepared that we may not discover what caused the seizures. We’ve been through this before when last year Sally was admitted with agonizing pain but tests never revealed the cause. We’ll just have to chalk it up to…well…cancer and the existing treatment for kids sucks.
The entire medical team will regroup today and discuss next steps, which we hope will include a plan to get us home this weekend as she has been stable for 36 hours. Nobody likes seeing Sally in Intensive Care, especially the staff at Sloan Kettering. Yesterday Sally received numerous visitors from all over the hospital including nurses from both the clinic and in-patient sides, therapists and administrators who wanted to check up on their little girl. Other parents have dropped off treats and offered help despite their own challenges. Between that and all of the support from friends and family both on social media and through privates messages our hearts are warm with love.
This morning Sally woke up happy and playful, she asked for me so Nicole called at 6:30am. It was great to wake up and hear her sounding normal again. I relayed the news to Thomas first who exclaimed “Phew! I was really scared and worried about her, I was upset a lot yesterday in school.” Our friend AnnMarie was with the boys last night and she said Thomas was visibly upset about seeing Sally unresponsive, even acting out what happened on the floor where her first seizure took place to explain what happened. We hate that the boys had to see it happen. We hate that they have to see any of the things their beautiful baby sister has gone and will continue to go through. Our hope is it will build their character and make them better men when older.
So today is about next steps. Getting Sally out of Intensive Care and the hospital, how anti-seizure meds will be delivered at home, how treatment will be affected and waiting on more test results. We also need to know what to do in case a seizure happens again. This is another reason why Nicole and I rarely ever leave Sally’s side.
Thank you all for your support and love, it truly helps us get through these dark times.
Please keep Sally in your thoughts and prayers.
Our thoughts and prayers are with all of you today and always!
God’s Blessing and comfort today! We are praying like crazy for your Sally and encouraging others to do so as well.
Much Love from StL!
I continue to pray for sweet sally…..
So glad to hear she is in better spirits! We are praying for Sally!!! She is one tough cookie. Xoxo
I am so happy to see Sally playing with Dr. McSTuffins…seemed like the perfect toy for her right now…hoping you were able to get a more comfy night sleep.
love you, please let me know if there is something i can get for the boys…we are buying Halloween costumes for the whole family
In God we trust ~ Sally and your family in my prayers always….
The above pictures showing Sally smiling and playing, that’s the Sally we hope for everyday but unfortunately it doesn’t happen. God bless all of you!
Praying for your sweet Sally & the rest of your family. Much love sent from Wisconsin.
Sweet Sweet remains in our hearts thoughts and prayers!!! So happy to see her beautifful smile andvsee her playing. Hang in the Kabel family. Better days are coming!! With Sally on so many prayer chains things HAVE to improve!! I believe in the power if prayer!! Sweet Sally Sunshine – lets see that smile!!
Sending love and healing prayers to your Sweet Sally. Hoping today is a better day for you all. cj
Sweet Sally, Nicole, Matt, Thomas and William – you are all in my prayers. So glad to learn Sally is back on her feet (so to speak).
Continued prayers & lots of love going to Sally and all of you. Thomas & William are wonderful the way they are handling everything and they know they have great parents that they can discuss their feelings with both of you. Hopefully tomorrow is better.
Sally and all of you were on the minds and in the prayers of many at the Frankie’s Mission dinner last night at Gargiulo’s. I hope it helps to know that you are never alone in this battle. Just wish there was more I could do to help.
Hi uncle Matt
Sorry to what happened to sally
Tell everyone I said hi
Give Thomas and William the biggest kisses for me