Sleeping after the MRI.
Jess from Child Life upgraded Sally’s sleeping sign.
Hi all – We’ve had a busy two days of tests for Sally trying to get to the bottom of what’s going on. Apparently our “Anger” blog post from Sunday night caused a stir among the staff at MSK. Visitors to Sally’s room referenced it and we had a lot of doctors in to see Sally, as well as the hospital’s patient advocate. We’ve seen posts on our Facebook page & blog and received messages from other MSK families that have had similar weekend challenges. We hope that the “stir” will bring some light to an issue that needs to be addressed, the hospital can’t just slow down for kids battling cancer on the weekends. We plan to see this through to ensure real changes happen.
Yesterday Sally finally had the cat scan that we’ve been waiting on for three days. Surgery was on call, thankfully we didn’t need them as the scan came up negative. Sally had inflammation, but not enough to be causing the pain she is in. Last night, Sally was visited by a neurologist, who had to explore if Sally’s pain was seizure related. Today, she was put under again for an MRI to evaluate her brain. Preliminary results came back negative. You have to wonder if these had been done on Friday or Saturday as planned we would have learned more.
Sally had one pain fit this morning, but overall has been improved today. This could be chalked up to the new drugs she’s receiving masking the pain, or perhaps she’s getting better. It’s a wait and see approach. With all the delays in getting these tests done, we’ve accepted that we may never know what caused Sally’s pain. Hopefully she IS getting better and we can put this behind us. However, that still leaves us questioning why Sally was in so much pain. Doctors are also baffled as to what happened on Friday to have caused Sally in a span of 30 minutes to go from normal to pale white with blue lips. If you’ve followed us from the beginning, you remember how Sally didn’t present Leukemia in a normal fashion, it took weeks of observation and her going through a roller coaster of health to get us to our diagnosis. We know our Sally likes to keep doctors guessing, and Mommy and Daddy stressed. 🙂
Sally will remain admitted for at least another day or two to monitor her pain and continue tests. The hospital is making us an appointment with NYPH’s GI Department to get Sally’s digestive issues evaluated, which needs to happen after she is discharged.
Today was my birthday, which I usually try to fly under the radar with. Truth365 surprised us by posting it on their page, with me in my tutu from the triathlon I participated in during Sally’s induction phase. I’ve received tons of well wishes, and wanted to thank everybody for your words of support. I realized on the way home that this was the first birthday in nine years of marriage that Nicole and I haven’t spent together, or as a family. I walked in and found the boys healthy and wound up, spending the day with Aunt Sabina. I got two brownies and a candle so they could sing happy birthday, and assumed they’d enjoy it based on their energy. When we sat down, they both had sad faces, and when I asked them why, they both said they missed Mommy.
Hopefully Sally continues to improve and we can get her home soon and be together as a family again. Please keep her in your thoughts and prayers.
Matt
So happy that Sally’s pain seems to be less and hopefully you can find out what happened to her. Happy Birthday Matt and I pray that your birthday wish comes true very fast. I also pray that you both get a good nights rest tonight and that Sally is discharged in the next few days. Continuing to pray for Sally and all of you.
Glad Sally seems a bit better. Sorry you are apart for your Bday. Hoping the worst is behind you and wishing you many happy moments with your loving family. Happy Birthday!
Happy Birthday Matt. I don’t know what breaks my heart more, your birthday missing your wife and family, Sally being so sick or the boys faces. I wish you much happier Birthdays to come. God Bless you all! Xoxo
Happy Birthday Matt…so glad to hear things seem to be improving for Sally. Always praying…love you guys, cj
Happy birthday, Matt! I will always think fondly of LSD margaritas on your bday. Sounds like you could use three or four…
Still praying for your little girl . Praying that she will continue to improve tom and be back to her beautiful little self without this terrible pain that she has been enduring over these last few days , your family is in prayers .
Thinking of you guys and happy birthday 🙂
try and speak to an Osteopath. they are wonderful at relieving pain, particularly when non traditional methods dont work. there are a few in NYC, most are board certified physicians. They really can do wonders!! good luck
Prayers to your sweet Sally that she wakes up feeling better tomorrow and that she continues to feel better! Praying that God heals her little body!
Also, wanted to wish you a Happy Birthday and glad you got to spend it with the boys. God Bless you all!
Wishing you a happy birthday Matt you are an excellent father & inspiring human being. Prayers for Sally & you all to get through this time swiftly & completely so you can enjoy your beautiful time together.
Praying for Sally everyday and hoping she/mommy will be home with their family soon!!! Hopefully you had a good birthday Matt, but would have been better spending it will your family, under one roof…..Miss you guys so much and hope to see you very soon!! I love you and if you need anything, please let me know.
What a society we have become, when your social media gets more attention than your actual presence!
Glad that Sally is feeling a little better. Here’s to next year’s birthday, when all of you can celebrate it together.
Prayers for all of you.