Clapping during music therapy.
Chowing down on sweet potato fries.
Hi all – We got word this evening that Sally is once again neutropenic. As a refresher, this means that the virus fighting portion of her White Blood Cells (WBCs) are just about bottomed out, so she is at high risk for infection. As a result, she will need to remain in the hospital until her numbers rebound which could be another week at least. This was somewhat expected, although the doctors did give us the option of bringing her home tomorrow afternoon after her last round of chemo this week. We talked it over and decided it wasn’t worth the risk, if Sally was to fever like she did on Monday night (which there is a good chance of) we’d have to bring her right back in and stay for good. The doctors only made this suggestion as they care about family dynamics and know Sally being in the hospital is hard on all of us Kabels.
In the end though, we need to do what is best for Sally, and that is keeping her in the hospital under the watchful eye of the medical staff as this week of intense chemo takes its effect. We are also going to be giving her double the amount of steroids so don’t know how this will affect her. Staying at MSK is hard on us, but safer for her, and being an infant she can’t tell us if she’s in pain or uncomfortable. Plus unlike older kids, she actually loves the hospital. She gets a ton of attention, music time, play time and always has mommy or daddy to herself.
So Nicole and I need to plan out next week. William finished his summer school program last week, Thomas finishes his summer camp on Friday, so starting next week both boys are home all day. This is most rough on them as they don’t see much of us, just an hour at night and an hour in the morning. Thomas has a camp music recital tomorrow, Nicole will be at MSK and I’ll be at work, but luckily friends will be attending in our place. Last time he had a recital, I was supposed to be there, but we had to take rush Sally into MSK. It devastated him and he let us know it, talk about feeling like worst father of the year, I may never live it down.
So the new normal continues on for us, looks like it’ll be awhile til the Kabel Clan is all under one roof. As long as Sally gets better, the long term will have to take priority over the short term for now. Please keep Sally in your thoughts and prayers.
Matt
So happy to see her eating!! Yay!
xoxoxo God Bless!
praying for everyone hoping this week passes quickly and you can get her back home soon! hugs to all
Poor baby. Wanted to know if she needs platelets again? I can donate again next week…
She is in my prayers daily, God bless her
We love you guys. She is one tough little baby ball of sunshine.
You are the best father there is. The boys will always know in their hearts and will grow into men like their dad that does whatever it takes for his family.
Please keep running! Take care of yourself.
xoxoxoxoxooxx lynda and rudy
Typo, 3x the amount of previous steroid. So I expect a lot of biting!
Nicole
Darling pictures of Sally <3 WBC's get back up where you need to be. Praying for Sally. Offering up mass for her tomorrow Feast of the Assumption of Mary. Prayers for continued strength, patience and understanding for the rest of the Kabel klan
Thanks Matt for all your good, thoughtful communication about Sally. I am following your ordeal and praying for sunshine every day.
I just love reading your blog and seeing the sweet pictures of Sweet Sally Sunshine.. My thoughts and prayers will be with you as you struggle to have somewhat of a normal to your life… prayers also that Sally feels better and better everyday!
Nicole & Matt you’re doing a great job of caring for Sally ,Thomas and William. Don’t worry about your boys , they’ll forgive and forget , they know you love them. You have your priorities in order. God Bless all . Grandma Sally is watching over you.
Let me know if you need help with the boys. Madison has another week of camp but I am home all day with my boys.
She’s soooo adorable! Look at that smile! Praying for her everyday! XOXO
Trust me, Matt. You are not even in the running (pardon the pun) for worst father. I’m sure you will get a video of the event and can watch it with your son, during Sally’s ‘good’ week.
I’m sure your relatives and friends are spoiling the boys – that should help – and school will start soon.
Love and prayers –