On Wednesday, we had a long day. We left at 9-ish for Children’s Hospital and got home at 6-ish. Jude had an MRI, spinal tap and suture removal scheduled in St. Paul and an appointment with the oncologist in Minneapolis. At arrived in St. Paul at the time they told us to arrive, but I think they told us a fake early time (perhaps as much as 45 minutes early), which bugs me. It’s like they are saying they don’t trust us to arrive at the right time and their time is more valuable than my time. Well, Jude had a great time playing in the waiting room and I had fun watching him work some balls through a huge maze. They had a movie for him to watch while he got all prepped for the MRI and spinal. They had to take his blood pressure, check his temperature, etc. He didn’t like any of that very much since it probably reminded him of the frequent checks during his hospital stay. The worst part came when it was time for them to put in the IV. They wrapped Jude up like a burrito in a warm blanket and I snuggled by his head while he screamed bloody murder in my ear. It’s just awful to see my little guy in pain. Shortly after, they administered anesthesia through the IV while I was holding Jude in my arms. In just a matters of seconds the medicine transformed a screaming, hysterical boy into a totally knocked out boy. Then they took him away. While he was sleeping, they did the MRI of the brain, the spinal tap and removed the sutures. I was so proud of myself for convincing them to take the sutures out while he was sleeping instead of later in the day while he wasn’t sleeping in Minneapolis. They told me they don’t know how they would have done it while he was awake. It will probably serve well to be such a fighter since he’ll have to ensure a lot in the coming years. The MRI, spinal and suture removal went well. We waited for awhile for his anesthesia to wear off and for him to regain energy after the blood draw for a cancer study that he is participating in. The appointment with the oncologist was running really late, but Jude just loved the playland there. During that appointment, the results of the MRI and spinal came in. The MRI revealed that the surgeon had indeed removed the entire tumor (as expected). The spinal tap confirmed that the cancer had not spread to the spine (as expected). They are letting some other providers review the results too, but we are not expecting any changes.
Jude ended up having a really bad reaction to the spinal tap. He’s had a really bad backache and headache since Wednesday. The headache is so bad that throws up almost everything he eats and drinks. This is not good since he needs to take medicine 2 times a day to prevent another seizure. Â
Yesterday Jude had an EKG. Preliminary results were normal, as expected. Jude also met with the oncologist, who recommended rest and caffeinated pop to help with the headache, which should stop the vomiting. It hasn’t worked.
This morning, I asked Jude what he wanted for breakfast and the poor darling said, “I know. I think I’m not going to eat this day because I don’t want to throw up.” Well, we’ve been up for less than an hour and he’s already thrown up fluids twice. I feel so bad for him and feel like he’s endured too much already.
I realized on the day of the MRI, spinal tap and suture removal that Jude was more traumatized by this whole thing than I thought. I thought it was just a few bad days for him and that he didn’t really think much of it. I was wrong. We brought him to get his hair cut and he screamed so loud that we had to stop the cut after she had hacked up his bangs. He apparently thought she was going to cut his head open with a scissors. He displayed the same new fear of scissors when I went to cut his hospital arm band off his wrist. Poor little guy!