Hi all – Got that photo mid-laugh when I arrived home, Nicole just remarked how she looks like a chipmunk with those massive cheeks. Sally had her big day of tests as well as another round of treatment today at Memorial Sloan-Kettering. She did very well, even sleeping through a plasma transfusion per Nicole. We do note that she grows very quiet and serious when we get to the hospital, her smart little mind knows when she’s there. Her spinal tap and bone marrow biopsy were quick, however they had to wait awhile for the last dose of chemo so spent most of the day in the clinic. We won’t have any test results until next week, we just have to keep a close eye on Sally for now to make sure she doesn’t fever, which she did once before with this type of drug.
Next week is another intense week of chemo. Doctors told Nicole about some other side effects we could encounter, which make us a bit nervous. They offered to admit her on Monday for the week of treatment, especially considering that they expect her body to react a lot faster than the last time. After discussing it, Nicole and I decided that this would be best. Infants with ALL can have their condition turn on a dime, much faster than older kids. With the rarity of cases like her, there is no “typical” for how she’ll react. Doctors seemed happy with our decision, it makes everybody relax a bit. Sally is also very happy in the hospital. Of course she is, the little celebrity gets SOOOO much attention usually being the only infant on the floor.
So on Monday Sally will start her treatment in the clinic, but get checked in that afternoon/night for the remainder of the week. Like before, her blood counts will all bottom out and she will not be able to leave until her WBCs return and her neutrophil hits .5. This means we could be in there for an additional week or so on top of that. It also means Nicole and I hi-fiving each taking turns home and at the hospital, friends and family watching the boys, and just trying to get through each day. It’s draining, but also comforting that Sally is being closely looked after which trumps everything.
So on Sunday (after I make a fool of myself in a yellow tutu) we’ll get to spend some time together as a family for the last time for several days, if not weeks. I know I’m looking forward to it.
Please keep Sally in your thoughts and prayers.
Matt
https://www.facebook.com/SweetSallySunshine
Hang in there Matt, Nicole & Sally! So very many prayers being sent your way! SO wish I was going to see the tutu in person…can’t wait for the photos!!
xx
Lots of love to you and your family….and you better post pics of you in that tutu!! 🙂 Matt, I know we only met a few times at McFadden’s/Calico Jacks so you probably don’t even remember me but, if there’s anything I can do, please just ask. I can’t imagine what you guys are going through right now, but there will always be plenty of helping hands to jump in whenever/wherever you need it. Hugs, cj
God bless Sally and her amazing parents, and of course big brothers. I so look forward to your daily updates and are amazed at how you are always able to get me to laugh and cry! Praying for you all, for strength, healing, continued grace to get through each day, for some good sleep throughout the long weeks ahead, for the doctors and nursers managing Sally’s care…. Sally is in our hearts, thoughts and prayers!! xoxo
Prayers everyday from St Louis for your “Sweet Sally” & your entire family.
Matt please contnue these updates I really look forward to them.
God bless your family. He will not forget you, He holds you all in the palm of his hand
Hang in there Matt and NIcole. Carly and I think of you everyday and Sally. All so much, so fast and her so little love
Thanks Matthew….she looks so HAPPY!!! I love you all….
Aunt Cindy
Hi, Matt & Nicole. Just wanted to let you know you have two more Upstate supporters (Aaron’s mom & dad). We’ve been reading your posts faithfully since Laura & Aaron gave us the news and asked for our prayers. Please know that we think of your family daily and carry the image of beautiful Sally in our hearts. Your fighting spirit is amazing–and inspirational to the rest of us. Good luck with this next round–sounds like Sally is one tough little gal!
Go, yellow tutu!!
You guys are the epitome of strength, with a touch of humor! I can’t wait to see that yellow tutu! Wear it well, Matt!
Lots of prayers coming your way through next week’s ordeal!
Love to all!
Jeanine
Please know that my thoughts and prayers are with your family. I started reading your blog when Lauren Murphy’s sister asked that we pray for sweet Sally. Hang in there, god is great and will pull you through all these tough times…
Enjoy these days, family. And Matt, please be careful on Sunday. Perhaps you should also wear a big picture or sign about Sally, so noone thinks you are auditioning for Swan Lake.