Hi all – as I closed with last night, Nicole and I got a brief break this weekend, but now it was time to get back to reality. I’ve got a lot of photos today so am going to include as I write, so bear with me here. Speaking of the weekend, check out the photo of Nicole, AnnMarie and Sam (Producer of Katie Couric show who was awesome) posing with Amar’e Stoudemire of the NY Knicks:
We were all up early today as Sally had an 8:30 appointment at MSK and the boys had their first day of school. Nicole and I have been stressed about this all summer, we decided to hold Thomas back in first grade to allow him to mature and develop his core skills a bit more. With Sally’s diagnosis, we knew we made the right choice as we won’t be able to focus on his homework as much as we had last year, which was a struggle early on. William is at a new school receiving various therapies. Both kids need a lot of attention, and was stressful for Nicole and I before Sally got sick. Now we have three kids who need special attention, and will be an ongoing struggle for us over this school year making sure all of their needs are met.
For some reason, Thomas thinks buttoning his top button makes him classier, and I can’t convince him otherwise:
Sally was unable to start her treatment on time as they needed a urine sample first, which she didn’t give up until the afternoon. She hung out in the crib and ate a little bit of a donut
and enjoyed some music therapy.
She also got to spend some time with Scarlett, who painted her this for her birthday. Happy Birthday Sally with a gold ribbon for Pediatric Cancer Awareness Month. As Nicole remarked, “look how nice it is, girls are so much more advanced than boys”
Sally then received the extremely strong and intense dose of chemo over the next several hours. Nicole also got briefed on her upcoming surgery this Wednesday. The team has decided to admit Sally for this surgery, she will arrive at 6am on Wednesday and spend at least the night. Sadly, this means that Sally will spend her entire first birthday in the hospital and away from her family. Yet another milestone Leukemia has stolen from us.
Nicole and Sally didn’t get home until almost 9pm. I had gotten home and spoke to the boys about their day. Thomas had a great day, there’s a girl in his class who is pretty, but not has pretty as his friend Carissa. William said he loves his class and his new teacher, although doesn’t want to go back which is status quo for him. Looks like he’s having fun here:
With this round of chemo, we need to check the pH level in Sally’s urine for the next two weeks, so have to collect it via a combine in her diaper. We also have to wear gloves while doing everything as the chemo leaves her body:
So its back to MSK tomorrow for Sally and Nicole to begin the process of flushing the chemo out of her body. It was an exhausting day for all of us. I had a terrible day at work, combined with hearing about Sally’s Birthday now being spent fully at MSK and also seeing a video on childhood cancer that brought on tears at my desk. This is such an overwhelming experience, some days are easier than others. And on those other days like today it feels like nothing can go right, and its a suffocating feeling, on top of being mentally exhausted.
Although getting to hold and dance with Sally did allow me a bit of an escape this evening. Please keep our little girl in your thoughts and prayers.
Matt
Sending you a virtual hug…I cannot begins o imagine what you and Nicole are going through… You guys are the bravest, kindest and strongest I’ve ever met
Matt, you give so much of yourself in these posts that you, almost daily, bring me to tears. Some happy, some sad, some frustrating, some helpless. My mind keeps taking me back to the evening we ran into you at Casa Calamari…about a month shy of Sally’s birth. Your family IS what you write. LOVE. I’m going to keep remembering that day…when Sally was safe and well. I pray for her daily, as well as the rest of you. The celebrations wait for you, not the calendar. xoxox God Bless.
Tomorrow is another day, and things will be better! I really hate to hear that y’all had such a stinky day. Get some rest. You can throw her one hell of a birthday bash when she comes home. I know it’s not the same though, and the significance of you having her well and at home ON her first bithday is so important. It’s funny how you can leave a store with a new appliance or tv and come home with a manual the size of an encyclopedia on how to care for and operate it, but when you leave the hospital with your newborn they give you one sheet of paper and send you out into the world with them. Nobody ever prepares you for all the hard stuff you might encounter with your child/children, and that just sucks! Hang in there buddy! Y’all are doing a great job! Continuing prayers and sending huge Happy 1ST Birthday wishes to Sally!
You made ME cry….wish I could help! We are all on this journey with you, but although we can empathize, we can’t REALLY feel your feelings. You and Nicole are doing such an amazing job!!! I’m sure the cancer video was a rough…you guys are brave! Sally’s birthday party will now be able to invite her extended MSK family and when she’s home again, there’s cause for another celebration. I’m waiting to see the next party….for when Sally kicks cancer’s as*!!!!!!!!!! OOps, I should have said HINEY???? BUTT?whatever…..what a party THAT will be!
Matt,
I am a fellow Kearney alum and teacher. If there’s anything I can do to help alleviate the homework troubles, don’t hesitate to contact me.
Matt and Nicole,
You have both been so amazing through all this and Sally knows she has the most amazing, wonderful and loving parents any child could have! She has 2 brothers that love and adore her and would do annoying to help you with Sally. Stay strong and remember that card Sarah sent you when all this was beginning. Strength is most important and you both have that. I enjoy EVERY minute I get to spend with you all and although Sally will be ” one ” tomorrow, although you all may not be able to be with her, she knows you will be in spirit….MSK will do their best to make her FIRST BIRTHDAY very special….I love you all very much and am looking forward to an amazing Fundraiser this weekend….ALL for Sweet Sally Sunshine!! I love you so much Sally Bally….
Just wanted you to know we are thinking of you in Buffalo. Loved the pictures from McFadden’s. I remember meeting you guys there for Bill’s game so many years ago.
Always praying for you all.
God Bless the Kabel family.
Matt you and Nicole are doing an amazing job and even spreading the word about the need for research while you go through this journey that has it’s many downs and hopefully ups too. Every day is precious and is a gift and you can celebrate all week long with Sally if she’s able. Yes, 9/11 is special for many reasons but celebrate when you are able to be together and when Sally feels well enough to do so <3 sending special hugs for Sally Happy 1st B-day sweet Sally Sunshine