Waiting for that phone call and your name to be called in the waiting room=torture. I sat there praying/hoping that everything is going ok with my little one. When I finally heard my name, I raced back to recovery. She was groggy, but was still whining for mommy (which I haven't heard a lot of lately). I hate seeing her like that...ESPECIALLY after being intubated. She has a barky cough and scratchy throat. We stayed in the PACU until her numbers looked ok and then headed to recovery. She had a fever at that point and I was terrified. I prayed that it was just a reaction to anesthesia and that it would go down. I was told we had to wait until her vitals looked ok, she drank 2ml's and was "awake". I let her sleep and she was probably exhausted. I ended up liking the position of the port. It was lower than I thought and looks like it will be right where her bra strap is. We were pressed for time, she drank and her numbers were ok so the nurse said we could "wake" her up to head upstairs to clinic.
Going to clinic was stressful... maybe because I knew we had to take the PICC out up there and I didn't know what to expect. She didn't want to be there...and neither did I. We did vitals, spoke with the PA, had the nurse come in and do a blood draw (needed numbers to be ok before the we pulled the PICC). Apparently it wasn't STAT because we waited for 1 hour for the blood results...only to find out her blood had clotted. At this point, we were needing to be gone to make it home for the benefit concert. They ran it STAT this time and we decided she was probably fine and to go ahead and pull it. It wasn't as bad as I thought. She screamed but she did great. Dr. Barnett informed me that if her numbers looked good (which we find out on Thur/Fri) then she would be "Standard Risk". Just for background.. when she was diagnosed her peripheral blood was 60% leukemia cells and her bone marrow was 90% leukemia cells. On day 8, there was no sign of leukemia in the blood and bone marrow aspiration showed her cells to be at 0.01%. So PRAYING that her numbers only got better to show NO sign of leukemia (be in "remission"). That way we continue as normal with treatment as standard risk. I am not sure what I will do if it doesn't come back that way...oh the anxiety. He seemed pleased with her progress so that's a plus! They said they would call me with her labs. We headed on our way.
She seemed excited to go home. She asked lots of questions as she always does.
Too bad those dang steroids haven't seemed to wear off. He said to give it at least 5 days... oh man. Still having meltdowns. Not eating as much. Still having random cravings, but I can sometimes distract away from certain things when there was no way before.
She slept a good portion of the way home. Yay. That always makes the ride home a little better. We were pressed for time and hoping we would make it in time for the concert.
The concert...it was so amazing. Everyone did a great job performing. Tavia did a great job putting it together. Everyone that helped was awesome. I can't even tell you the feeling I got when I drove up to the high school and saw all of the cars (yes we were 5 min late). I had an instant feeling of love and gratitude. I couldn't believe it. When I walked in, I can honestly say that I was overwhelmed in so many ways. A good overhwelmed...anxious...loved...nervous... humbled. This community has done for us than I would have ever thought. Not that I didn't think there were "good people", but the compassion and generosity that has been shown is above and beyond what is needed. The donations are unbelievable...not that I am most concerned about medical bills..because Taleah is so much more important. However, in the back of my mind I am constantly thinking about the cost of every little thing. Again, I will never know all of the people that donated time, work or even showed up to show their support. I wish there was a way to thank every single person. It was kind of a blur after the concert. I was running on little sleep...emotionally and physically exhausted. Slade was crying because he was tired. Taleah was whining/crying to leave. I wanted to talk to every person, but there was no way. I feel like there is so much more to say about the concert, but thank you is what I want to say the most. THANK YOU!
Taleah is asking SO many questions. It is getting tricky to answer them "correctly".
- Where is the "kemia". (I told her in her body)
- How did the "kemia" get in my body? (didn't have a great answer cause I don't know)
- Why did my port get sick? (I told her they took it out to fix it like they fix her)
-Why doesn't Chloe have "kemia"? (I told her she was special like Chase and Mathew)
-Why is there blood by my new port? (I told her from surgery but it's dry now)...she then told me that it was cool and blood is red and she likes red
There are so many more and I can tell her little wheels are turning. She is trying to figure this out. Still not what a 2 year old should be asking questions about, but it's her new life so some extra knowledge can't hurt.
Her counts came back pretty good. Going off memory...
32 lbs(up 3 pounds from diagnosis)
(I am going to put what they mean and ranges on my next post)
Dr. Barnett instructed us to let her be normal this week. Her counts are good. She should start feeling better and enjoy the next few days before we start the next phase (hopefully next Monday if her ANC is above 750 and platelets above 65,000). I am going to let her do all of her favorite things. I can't wait.
I just have to say that I can't help but to be SO nervous about the results. I just read that a little girl that was considered "low risk" just had her post induction consult and found out that she is actually now "high risk" and that will change a lot of things. Reading that made my heart sink for her...and then thought about our situation. I am hoping for good news so much... and so were they..and they kind of expected it... like us... but they didn't get it. I feel like it is taking over my thoughts. I have got to figure out a way to not live in constant anxiety. I can't help but think (sometimes) that a good day...or good moment is preparing me for something bad. I know it's terrible to say/write. Just really how I feel. I better just think positive and enjoy every second. It's all out of my hands. I have so much to enjoy and be thankful for.