My current view as we wait for his carboplatin to be made. It usually takes an hour, and it is in EXTREMELY short supply so they have to be sure it will get used. And yes, I worry about the backorder also.
Current View
Browsing Category Cancer Update
5am alarm and back to the grind.
I love him more than words can describe!!! Lots more to come when I have some time to share so many things. But for now. I bring you the winner of the stick horse at our first polo match. I truly didn’t know what to do! Do I run after him? Do I tell stop? Do I run the race for him after? Nope. I…
Shots, ANC counts, and spine tan
He had some pretty rough moments after anesthesia, but we made it! Quite a day. But most are right now. Then, we learned that I would have to administer a shot today through Sunday if we were to still go to Nashville. Or I could take him to clinic each day of the weekend. His ANC counts are low yet again. 😞 His bone marrow…
Been a minute :) – Anesthesia, everything is hard, work, new platform, and ready for the weekend!
We had a breakthrough with anesthesia today. It has been so difficult to feel his rage as he wakes up. The screaming, hitting, choking. All the things that are not even remotely our little guy. Dr. McDivitt is an angel. She saw him choking me two days ago and thought about it all night. She woke up thinking about it. Same here. She said she…
Anesthesia Rage, Filgrastim, and Charlotte
Just a short update. We settled into a rhythm of sorts this week, though the days have been pretty full. We continue to struggle with Alexander’s anesthesia rage, but we may be zeroing in on a better strategy. We gave him midazolam, then Precedex, then propofol the two days before today and got good results getting him to go to sleep peacefully, but he has…
Post-Anesthesia Anger and the 8-Bit Antidote
We are settling in to the routine rhythm of treatment. One of the constants so far has been Alexander’s anxiety at getting the anesthesia before his radiation and his anger upon waking up from it. We have tried a couple of different combinations of drugs to help him wake up less angry, but we have had no success so far. He rages every time he…
Port Placement and Anesthesia Issues
Today started off with some unnecessary stress: I called for a shuttle from RMH to St. Jude in what I thought was plenty of time, but after waiting a while, I decided we would just drive the car and valet it. What I had forgotten was that the car was in disarray: stuff needed to be taken out and the car seat installed. By…
Start of Treatment and Another Gut Punch
This morning started eeeaaaarrrrrllllyyyyy. We got to the hospital at 6:00 for an MRI to take another look at a little spot the docs were unsure of, but we weren’t worried. After all the necessary prep, Alexander went under and went back for the MRI. During that time, we learned that we needed to got to radiation to give consent. We didn’t realize how time-sensitive…
Tumor Board
I just wanted to expand on Christy’s expression of anger yesterday. I feel it too, in waves. We are not angry at people; we are angry at the obscene injustice of this situation. Hours after making the heartwrenching decision to stay at St. Jude and accept their treatment recommendation, we received the final pathology report from CHOA. It incorporated the test results from UPMC, a…
Home
We are going home! I needed to go home and said so. I have not been home in a month after starting “vacation.” We were delayed for our flight. Then, Alexander delayed the entire plane again because he was so upset. 🙁 Our incredible attendants calmed him down. But! We are about to take off. Daddy will pick us up from the airport, and we…