Hi all – Sally is scheduled to undergo a 2 hour surgery tomorrow morning at 7:30am to insert a permanent feeding tube into her stomach. Since tomorrow is also her birthday, and she’ll likely spend the day recovering, the folks at MSK celebrated it with her today.
Scarlett and her mom Shannon surprised Sally with tons of stuff including hats and games. Scarlett even wore a special dress just for Sally, refusing to wear a sweater or a blanket (ignoring the cold inside) so Sally could clearly see it all day. Shannon sent me the photo above, will try and post more tomorrow if I can. You can also see a birthday picture Cami painted for her in the background. MSK’s Child Life had a celebration for Sally in the afternoon with a birthday cake. Unfortunately Sally was very tired and pale, and after Nicole asked for a blood test and found her blood counts were low she had to receive a red blood transfusion. This happened late so they didn’t get home til 9pm this evening.
I rode along in the car with Sally and Nicole this morning to the hospital because they missed me. Actually, so they could use the express lane into the city, but I like the first reason better. We still hit a lot of traffic but it was good because it gave Nicole and I quiet time to talk for awhile. We’re both very nervous about tomorrow and had a period of second guessing whether this procedure was worth the risk. We both decided it is, as this is a two year journey and we need to know we can give Sally food and medicine, especially the oral chemo she’ll eventually have to take. We’re also still confused about why they didn’t tell us about this two week stretch of intense chemo earlier. Finally, we’re worried about Sally’s bone marrow results that we should get this week. They’re expected to be good, but also know they could turn bad at any point so want that assurance fulfilled for this cycle.
We’re also both feeling fried and tired, emotionally and physically. Nicole has been at the hospital all week living this non-stop, her only mental breaks there are with Shannon and Scarlett. Work has been busy and stressful for me, I’m still answering emails now and have an important meeting while Sally will be in surgery tomorrow. I just want to shut off my email and phone and focus on her and I can’t, and it frustrates me. I’ve had people reaching out all day about offering help with fundraisers and other support and I can’t get back to them and feel guilty about it.
Tonight I had to talk to Thomas about cancer as he said he wished he could have it instead of Sally so he could deal with the pain so she wouldn’t have to suffer, and also so that he could get more attention like she gets. That is such a double sided sword to deal with, trying to make him understand how bad cancer is, and that he’s going to have to accept that Sally is going to need more attention and that we’re doing our best with him and William. This week has been particularly frustrating as Sally was supposed to be 9-5pm every day, but has turned into 9-8pm and an overnight stay (at minimum) tomorrow night. We were all supposed to celebrate her birthday tonight as a family, and couldn’t.
Have you ever been at the beach on a day with big waves, and you swim out and get hit by one that takes your breath away and while trying to recover you keep getting hit by wave after wave? That’s how I feel right now. Nicole and I both realized that we each have trouble typing on our phones since this started, and that we keep dropping things. Probably a combination of exhaustion and our hands shaking from nerves. We both actually got a laugh out of it, more like a “that’s happening to you too?!”
So tomorrow will hopefully be a happy day celebrating our little girl’s birthday and praying her surgery goes well. Its late and want to get to bed so haven’t even re-read this to check for grammar so sorry if there’s typos. We obviously have a lot to deal with tomorrow, so we ask that you withhold sending texts and emails wishing Sally a happy birthday. I will try to post a photo on Facebook (facebook.com/sweetsallysunshine) that people can post birthday wishes to instead.
Tomorrow is a big day, please keep our almost one year old in your thoughts and prayers.
Matt
Just wanted to pop in and read up on how my beautiful little nugget is doing! I wanted to wish Sally a HAPPY HAPPY BIRTHDAY and the very best of luck with the g-tube placement tomorrow! Know she has so many people in her corner and that only the most positive thoughts are being sent her way. :). I am not working tomorrow night but Kate is so she’ll be in great hands. I can’t even imagine the stress you and Nicole are swimming in but know that you both are AMAZING! Keeping your family in my thoughts and prayers today and hoping NOT to see you on this side soon. –Hannah
HAPPY BIRTHDAY Sweet Sally, love, hugs, kiss, & prayers to you!!!
Googg luckk today with you surgery, and Matt & Nicole stay strong, love and prayers to you all.
I’m praying right now it’s almost 7:30 and I know this poor sweet little sweet heart won’t get the big first birthday she deserves. But remember this is to ensure she has many more to come. So we pray and pray and pray. I pray for all of you
I keep thinking as I read Matt’s excellent posts how many stories you will have to tell Sally and William and Thomas when they get older. And today’s is about Sally’s first birthday. I keep thinking how special Sally will feel, to have gone through so much and be so cared for. You have 3 great kids, Matt and Nicole. And you are truly awesome parents.
Happy 1st Birthday Sally……I love you!!!
We do not know each other but I have been following your posts for some time. I am so touched by you and your wife and your lovely family. I include your family in my prayers every night. I cannot imagine what you all are going through and admire you honesty and strength. God Bless!
Happy Birthday baby girl!!! Many thoughts and prayers coming your way today.
Happy birthday sweet Sally sunshine! Stay strong beautiful girl – my family is thinking about you everyday!
Matt, do not worry about getting back to all of us – we understand. Just concentrate on Sally and your family. Know that we are always supporting you in prayer
Sending lots of prayers to Sally and all of you this morning…I can’t imagine how excruciating this is for everyone. Stay strong, she’s going to get well and celebrate her birthday with the family soon!
Happy, happy birthday, Sweet Sally Sunshine! You are all in our thoughts and prayers each and every day!
Love to you all!
Jeanine
HAPPY BIRTHDAY SWEET BABY SALLY WISHING YOU MANY HAPPY AND HEALTHY YEARS TO COME XOXOXOXOXO
Sweet Sally Sunshine I have been praying for you all day. You are so lucky to have such wonderful and caring parents! Matt & Nicole I have also been saying lots of prayers for you too! I know that Sally will be home with you and the boys soon and you are going to have one big happy birthday party!
Happy 1st birthday sweet Sally!
Thinking of all of you and praying for a speedy recovery!
Thanks or all your time that you spend posting her progress for everyone.
Praying for strength for the whole Kabel Family!
happy birthday to my little niece and to my kid’s beautiful cousin.
In our prayers and think about you everyday.
We love you,
Kabels