Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Two days after getting his bone marrow biopsy, George was back at UPenn for a lumbar puncture. The traffic was hell going into the University City area, but I’m starting to think that is just the norm. There is SO much there – The University of Pennsylvania, the hospitals, the research centers, CHOP (Children’s Hospital of Philadelphia). It’s just a perpetual cluster-f*ck. And so, we were stressed that we were going to be late the whole drive there! Add to that the time it takes to drive around the cavernous parking garage and find a parking place. Well, we actually made it kind of on time and got checked in. They took us back to the pre-op room where we met Dr. Wang who explained the process and answered any questions we had.

George was very nervous because, unlike the bone marrow biopsy, the lumbar puncture would be done without sedation. He would only receive an injection to numb the area where they would insert the needle to collect four vials of CSF (cerebrospinal fluid). Dr. Wang said it would take about 30 minutes. I told George to remember what Dr. Wagner at Jefferson Hospital had said..that it was kind of like getting an epidural where they numb you first and then you don’t feel the actual big needle, not that he’s ever had an epidural. But I have! And I told him the numbing injection is what hurts, but that he can handle it! He seemed a bit more comfortable with the idea after talking to us both. After signing one more consent form, George was wheeled off to the procedure room and I returned to the waiting room.

While I was in the waiting room, I received tex message updates about George’s status which I thought was pretty cool! So, I read my book and waited for updates.

Once George was settled in the recovery room, I was called back to sit with him. He had to remain lying flat for an hour. He told me that it hurt a bit, and I said “Well, you survived it! Yay!” Dr. Wang had told him that about 10% of people may develop headaches a day or so after the procedure and they could last up to a week. Like a migraine-grade headache. We are hoping George is in the 90% group! We were told to be on the look out for signs of infection in the injection area, leaking or bleeding. So far, so good! No headaches or anything else! He just has a small Band-Aid over the injection site. When the lab analyzes his CSF, we are hoping he is in that 90% group too – the group that does NOT have leukemia cells in the spinal fluid! Dr. Loren told him she thought we would already know if he did. I looked it up and the symptoms of CSF in the spinal fluid include headaches, seizures and vomiting, none of which George has displayed.

While George was having his procedure done, his phone rang and I answered it. It was MD Anderson/Cooper in Camden wanting to move up the start of his next round of chemo from next Monday to tomorrow, Thursday. I said that would be fine and was actually a little relieved. It is so important to keep George in remission until his bone marrow transplant and when Dr. Ghimire said he wanted to start chemo on Monday, we told him George had a bone marrow biopsy that day and the lumbar puncture on Wednesday, so he decided George would start the following Monday. After discussing it with Dr. Loren, they agreed that George should start ASAP. So…tomorrow he starts consolidation chemo round #2.