Home, the Boys


Happy to be outside.

Hi all – just wanted to drop a quick note that Sally was released on Saturday night after tests we were waiting on came back negative. Before leaving, Nurse Tracy gave us a lesson on how to give Sally a dose of emergency anti-seizure meds should she suffer a seizure of longer than 5 minutes, the med should snap her out of it. She is on constant anti-seizure meds so we don’t anticipate any further episodes, however we have been told to keep the emergency one on us at all time. We also discussed what to do if a seizure occurs, most notably turning Sally onto her side. Luckily, Nicole recognized the seizure when it happened and took all the appropriate steps. We are also waiting on clarification as to the cause of them.


Nurse Tracy teaching us to give an emergency anti-seizure med that should snap her out of one if it last for longer than 5 minutes.


It was such a relief to have Sally home watching me make breakfast yesterday morning.

Before the seizures, we were going back and forth with the Leukemia Team on Sally’s central line, and the recent infections she’s battled. Those unsettled discussions leave a lot up in the air for how our week looks with treatment. Sally is scheduled to receive two doses of Cytarabine, a chemo she has only received one dose of in the past and is known to cause high fevers and severe nausea when doubled or tripled. However, the Team may want to change out Sally’s line which would require out-patient surgery, so don’t know if she’s still getting the chemo this week or not, or even if she’s having surgery done. Hopefully we will get some answers today.

In the meantime, we enjoyed a family day together yesterday as we headed out to Long Island to a fall festival at the camp the boys went to this past summer. The camp, Camp Sunrise, is for kids battling cancer and their siblings. It was nice to be outside together, especially for the boys who hadn’t seen Nicole or Sally since the seizures Wednesday night. Yesterday William was playing with a doll and said that the baby had brain boo-boos and was going to die. Brain boo-boos is how I explained the seizure to them the next day. While in the car on the way to the camp, William grew visibly scared when Sally fell asleep, we had to reassure him that she was just napping. Nicole also saw a journal entry by Thomas where he wrote about the night of the seizures, with clear nervousness. We’re trying to talk to the boys about it so they can express their feelings.


Family Day.

We are looking forward to Halloween for Thomas and William. Last year, although we had fun dressing up at the hospital, we were stuck there longer than expected and when we finally got home Nicole tried to take the boys trick-or-treating but the houses were out of candy. It was a total dud, and our job is to create great experiences for them due to the other sacrifices they make. We hope to make Halloween up to them this year and will likely avoid the hospital if possible to make sure the boys have a great experience by going out earlier.

Thanks to you all for your love and support. Please keep Sally in your thoughts and prayers.




8 Responses

  1. Aunt Cindy
    Aunt Cindy October 27, 2014 at 10:12 am | | Reply

    Good News to leave the hospital with and hopefully she will be seizure free!!! Glad you guys had a great day yesterday at the camp and got to get out…If you need anything, please let me know. Hope to see you this Saturday but it’s up to you guys? Love you all and so HAPPY THAT SALLY IS BACK HOME!!! :o)

  2. Tessa Martin
    Tessa Martin October 27, 2014 at 10:21 am | | Reply

    Great news that your all home together, as always sending love & prayers

  3. Sister Virginia
    Sister Virginia October 27, 2014 at 10:29 am | | Reply

    Great news! Hope the boys have a boo-tiful time on Halloween.

  4. Candi
    Candi October 27, 2014 at 11:33 am | | Reply

    My heart aches for you. Seizures are such a traumatic thing to witness. My adult daughter has them and it’s awful. I feel so bad for your sons because I know what it did to my other daughter and she was 20. I will continue to pray for sweet Sally and your family. Thank You for sharing your precious daughters story.
    God Bless

  5. Gisele
    Gisele October 27, 2014 at 12:14 pm | | Reply

    If you guys need/want trick-or-treat buddies (hangers on), I’d love to join you, with or without my family!!

  6. Sandra
    Sandra October 27, 2014 at 4:51 pm | | Reply

    So happy that you all got to spend a beautiful day outside this week-end, beautiful day for a beautiful family. Hopefully trick or treating will go well for the boys and that Sally remains seizure free. Prayers and good thoughts continue for all of you.

  7. Geri McGill
    Geri McGill October 27, 2014 at 5:09 pm | | Reply

    Hope the boys have a great Halloween. Praying as always

  8. Colleen Price
    Colleen Price October 29, 2014 at 5:14 pm | | Reply

    Sweet Sally Sunshine. ..you are so loved and you have the BEST family ever! So much love, and so many prayers, and so many tender thoughts are with you each and every day. God bless and protect you all! With love, Aunt Sarah’s friend, Mrs Price ♡

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