Hi all – I was about to hit send on an update while my office computer was being worked on, but just received a call from Nicole saying that Sally is being admitted.
We brought Sally in yesterday for her scheduled chemo, which was delayed from Monday due to her unexpected low counts and vomiting. Sally has continued to vomit, although a bit less than earlier in the week. Nicole also wondered if her platelets were low as Sally had a bloody nose and gums. Sure enough, yesterday’s cbc revealed that they were bottomed out so needed a platelet transfusion.
Between her low counts and continued vomiting, the team decided to skip the week’s chemo and move right to the next week’s planned treatment. By hitting her with the scheduled chemo, it would have deteriorated her further and landed her in the hospital. This would have likely delayed treatment, which they felt was more risky than skipping a week. So like that, she got Vincristine and started a week of steroids, aka Hell Week 1 of the cycle.
In addition to all of this, Sally has overall been having digestive issues. When throwing up, more is coming up than had recently gone in, which makes us wonder if her body is not digesting it. Earlier in the week, pieces of bacon came up, however she had not had bacon since the day before. Coupled with that, Sally has been pooping a ton despite the little nutrition she’s getting. Finally, she’s been getting fits of pain where she arches her back and screams for several minutes. Totally out of the blue where she’s smiling before and after.
We’ve seen this at home for some time, but Sally has been her sunny self at the hospital so our team never saw it. Yesterday the team saw firsthand the large amount of fluid she vomited vs what she had been fed all day. They also saw her have a pain fit.
We brought her in today to drop off a stool sample so they could test it. While there, she had another fit in front of our usual NP, Lauren. They decided to give her IV fluids since she hadn’t peed since the night before and antacid through the IV to make sure her body digests it. She WAS going to be sent home hooked up to an IV backpack while they waited for the stool test results to come back.
That was until Nicole just called me. Apparently Sally’s coloring went from yellow to white, and her lips a blueish color in just a matter of hours since this morning. They ran a cbc and her counts have dropped since yesterday’s test, and her platelets are still bottomed out. Overall, her counts look unusual. The hospital has decided to admit Sally so they can monitor her closely with so many unknowns.
Nicole and I are always nervous, on a scale of 1-10 we’re always at around a 7 probably. Right now it’s more like an 8.5, although doing our best to stay calm, which Lauren kept saying “you both are being so calm.” We’re trying…really hard…but really want to find out what’s going on with our little girl.
We’ll update you when we know more, please keep Sally in your thoughts and prayers.
Matt
Hoping and praying they figure this out ASAP. Poor girl. Poor mama and daddy. This sucks. I hate cancer.
We’re always thinking of Sally and your family. Continuing the positive vibes toward MSK today. We hope there are fewer unknowns soon for you.
Thank you for the update. Praying with a good understanding of that anxiety scale.
Sally is in my thoughts and prayers every day but I am praying extra hard for her today. Thinking of your family.
Prayers coming to you guys from Waynesboro, PA. Stay strong & keep the faith!
So many heartfelt prayers are being sent your way!
Prayers and love coming from Scotland sweet Sally xxxxxxx
Poor baby. Hopefully your team gets to the bottom of everything and Sally is feeling better. Please stay strong. Thousands of people are praying for Sally and all of you.
Freaking damned leukemia…Sally we’re all praying for you sweetheart!!!
Prayers continue from St. Louis.
Stay strong….we are praying for all of you!
Xo
Prayers from Virginia!
I am so sorry to hear about all of this. I really hope that Sally isn’t in too much pain, and I hope that you guys are ok. We are sending prayers your way.
Pretty impressive that you guys are individually and together a 20+on the 1-10 scale. Fingers crossed and lots of good vibes that answers come quickly and are fixed even quicker.
Sucks that while the “routine” is bad enough – curve balls keep being thrown at your little sweetie.
Cyber Hugs of Support for all of you..
Continued prayers…God be with all of you.
Prayers for your entire family!
Love to Sally. Saying prayers for her and both Nicole and you. Stay strong Sally! xoxox
Although you are all in my daily thoughts and prayers, today special prayers for Sally and for her team of Medical professionals that they find out what is wrong and help Sally find comfort on the road to recovery.
Thoughts and prayers are with all of you! Hope you get answers soon and Sally feels better.
Prayers…always prayers….please, God, let them be answered! <3
Your sweet daughter and your whole family are in my thoughts and prayers.
We are always thinking of your family and sending love and good wishes your way. Sally and your boys are lucky to have you as parents. (My husband Gene Song worked with Matt)
I know each of would trade places with Sally in a moment. This must be so difficult for you. She’s is a beautiful child & her sweetness shines thru. Prayers are continuing
Sweet Sally, you keep fighting the good fight and kick cancer’s butt! Many many prayers to you all! Hugs!