So yesterday was supposed to be day 1 of Round 3 of Shyanne’s treatment for AML. We had been home for around three weeks this time due to her numbers not recovering quickly. When we got to clinic her numbers were AMAZING as her ANC was 3000! It had more than tripled since last week.
As you can see from the Instagram screenshot she had not been feeling well. It had started on Sunday and we weren’t exactly sure what was going on because she would be kind of puny first thing in the morning but after throwing up she’s feel better and be her normal little self… at least until Monday.
It took her a bit longer to get back to sorts but she did feel better later in the afternoon… after I had called the pediatrician and the clinic. We were prepared to go to the ER, if anything changed for the worse or if any new symptoms arose.
She has been chewing on everything and drooling a lot so we weren’t sure if it was teething related or not and then the fact that she would start playing and being her happy little self made everyone think it was anything for major concern.
Then Monday night she had a rough time but eventually settled down and slept a bit but she was just really fussy yesterday and very sleepy like… definitely not our happy girl. When we came to clinic I had it in my head to ask for an MRI (our last one had been scheduled for May but with the AML diagnosis the doctor had canceled it) just to rule out a possible shunt issue. The doctor brought it up before I had to ask so I quickly agreed.
She was admitted to her ‘princess suite’ … which is a bit bigger room than our last couple. Sissy brought some things up and then I went for the rest. We did all the fun paperwork, Covid swabs, and tried to get settled in.
They came in the room to do some X-rays of her shunt and she did really well. Later they came and got us for an MRI… again she did really well. I was a bit surprised when they came back for a CT scan.
Our transporter tried to keep us entertained with some jokes:
What does James Bond do before bed?
– He goes undercover!
What do you call a pampered cow?
– Spoiled milk
What is a cows favorite past time?
– going to the mooo-vies
It was a bit of a distraction and I think he had a couple more but I honestly don’t remember them. I was more worried about keeping her covered with a blanket as the hospital has had a big surge in COVID patients and we had to get in the elevators after a couple. They do a good wipe down in between and everyone is wearing their gear but it’s still scary to think about.
When they doctors came in later with a procedure kit I knew something was up. They needed to check the fluid flow from her shunt. This involved sticking a butterfly needle through her scalp into her shunt to try to draw some fluid out.
If the fluid didn’t come out, there was a problem. If the fluid came out to forcefully, there was a problem. After two tries there was no fluid coming out so we knew there was an issue.
The tip of her shunt was barely sitting in the ventricle and the doctor said it was just barely trickling which might be ok for someone else but not for little miss.
It was a CRAZY day to say the least. Once they did the last procedure they left to discuss it with the neurosurgeon and then came back to let me know that she would need surgery ASAP … that was around 6:00 pm.
I cried… couldn’t help it. It was/is a lot and it just overwhelmed me in the moment. I know that everything happens for a reason like us getting delayed for chemo this time which allowed her counts to recover so amazingly which in turn put her in a good position for this emergency surgery… but knowing all of that just didn’t help my heart at that moment. I cried my tears and then got busy.
I started getting things gathered together as our room was still a bit disorganized. The nurse came in with the wipes and a gown so I could get her bathed and changed. I also planned on changing the sheets as they had gotten some blood on them from her procedure but we didn’t have time.
The doctor came up to get her and told me I could carry her down as they were ready. He talked to me on the way down to the OR but I don’t remember a lot of the conversation as I was just in a zone.
By 7:00 she had been handed over to an OR nurse and was being prepped for surgery… I sat in the waiting room and texted our family to let everyone know what was going on. The doctors and nurses called me during the surgery to let me know how things were progressing. She was the only one in the OR so I could easily follow her progress on the screen as well.
When I was in the waiting room I realized I had forgotten my wallet and my mask!!!
I used my shirt to cover my face until a doctor popped out to talk to me and I asked him if he could get me a mask. He did and I was very grateful! I was very upset with myself but things happen and sometimes you just have to give yourself GRACE. Thankfully we had not been near anyone else on the way to the OR.
Around 8:20 she was finishing up and headed to recovery. I could hear her crying when they called me.
After getting some milk and keeping it down we got to go back to our room. She was her happy little self again! It’s amazing to see how quickly she recovers from such traumatizing events!
She got her dressing change when we got back to the room and I changed her outfit as well. Then we settled down and tried to eat some dinner (it was cold by then) and some snacks… she loves her white cheddar Cheetos!!!
The doctors came to check on her and they monitored her through the night and she did AMAZING just as she always does… she is such a little warrior!
We’re not sure what today will hold but we are thankful for another day and we are so BLESSED to have so many people who love us and pray for us!
Thank you all so much!!