Christmas Chemo

Yesterday, Charlotte and I had a 8am appointment at Primary’s for her monthly chemo visit.  We scheduled it early, because she was also getting a LP (lumbar puncture/spinal tap).  Since they would be sedating her, Charly’s not allowed to eat from midnight the night before or drink from 3 hours before her appointment.  We find the earlier, the better on these appointments.

Of course, Salt Lake City experienced freezing rain and snow that started the night before.  The drive up was okay for the first half, but by the time we hit the half-way mark, the snow increased and everyone was thankfully going slow.  I planned extra time into my commute, but we were still 15 minutes late.  Since a lot of the clinic staff were also delayed, it wasn’t a problem.

Charlotte’s hemoglobin was high last time.  Dr. Maese explained that it can go up to 20x the normal level before they get concerned, and Charly’s was 10x the normal level.  It’s due to the chemo, the liver will go back to normal when we discontinue the chemo, but in the meantime, they keep an eye on it.  He didn’t report any concerns with her hemoglobin levels after reviewing the blood results, but her ANC level was 1900.  ANC (Absolute Neutrophil Count) is how they measure her immune system, a normal system is between 3,000-5,000 (I had to Google, because I couldn’t remember).  During maintenance, they want Charly’s ANC to be lower than normal, but higher than what she would have been during the hard chemo – around 1000 (according to my notes from the start of maintenance, but I’m going to ask next month to be sure what the goal is.  She’s rarely been that low).

Because it worries Sean, which starts me getting worried, I did ask if these consistent higher ANC levels were anything to be concerned about, and if they were associated with a higher risk of relapse.  Dr. Maese assured me that was not the case, and that some patients just need to keep increasing the medication to achieve the levels they are looking for.  Last month, they increased Methotrexate to 10 pills every Thursday night.  This month, they increased her 6MP (Mercaptopurine) to 2 pills every Monday – Friday and 1.5 pills on Saturday and Sunday.  Charlotte hasn’t been showing adverse reactions thus far to the increased meds, so I’m hoping she won’t feel any affects from this increase.  Charly is back on steroids for the next week.  I have noticed that by the end of the 5 days of steriods, she is exhausted.  Last month, she passed out on the couch at 6pm, and I woke her just to give her chemo and put her pjs on.  She went right back to sleep for the rest of the night.  I don’t remember seeing her fade so quickly during the summer, so I assume that school is what makes her so tired.  

We crossed the hall for her LP, and while she was being sedated, I asked the nurse how many of the patients used the clinic for conscious sedation versus those who chose general anesthesia in the RTU on the first floor (rapid treatment unit).  I asked because given the amount of LPs that a cancer kid has to go through, I would expect to see more traffic in the sedation area.   Also, when speaking with a mother of a lymphoma patient, she shared how her son received too much anesthesia in the RTU and his heart stopped.  The staff had to start CPR on her son. Thankfully, her son is fine.  I asked if she ever used the clinic for his LPs, and she said no, they always used the RTU.

Charlotte's nurse admitted that a lot of families prefer the RTU downstairs.  She shared that some families were hesitant to do the conscious sedation in the clinic, preferring to use the RTU and general anesthesia instead.  Those families who do try the clinic usually end up using it from that point on.  A few families decide to return to the RTU, not liking the conscious sedation.  The nurse told me of one mother who did not like being in the room with her child while the spinal tap was being accomplished.  In the past, Sean has shared with me he does not like watching them accomplish the procedure.  He didn't understand how I wasn't bothered by it.  Honestly, if I let it, I'd probably be bothered by EVERYTHING.

In the RTU, the patient is allowed to go into the treatment room with one parent.  The parent stays just long enough for the anesthesiologist to knock the child out, then the parent is escorted out of the room.  When conscious sedation is done in the clinic, Charlotte is treated by a nurse practitioner who gives Ketamine and Versed through her IV.  She is lying on the table and her eyes dilate and shiver.  She then is curled into a ball and the oncologist or the nurse practitioner accomplishes the LP.  One nurse monitors the heart rate and breathing, and another nurse holds Charlotte in the correct position while the nurse practitioner takes the spinal fluid.  Charly will sometimes nod or blink when the nurses ask a question.  I'm only 4 feet away, directly in Charlotte's line of sight if the nurse isn't standing between us.  I don’t mind being nearby, watching and listening to what they are saying about Charlotte’s treatment.  I listen and can tell her nurses that she can take a relatively light dose when they ask how she reacts to the medication.  Charly usually comes out quickly.  Yesterday, when the nurse looked at the records and asked why Charlotte received a higher dosage than usual last time, I could remember that her spinal fluid was slow to come out, and Charlotte started waking up a little while they were collecting their fluid sample.  

The clinic gives less medication and is just as effective.  She’s not under as long, and recovers more rapidly.  It’s also nice financially.  There isn’t a separate charge for an anesthesiologist not to mention the other bills from the RTU.

After our clinic visit, we get into our car, which has accumulated 3 inches of snow during our appointment.  The drive was slippery and slushy, so Charlotte and I decided to stop and get brunch at Village Inn.  Charlotte had a fried egg, sausages, and fruit, and I had an awesome Belgium waffle and bacon…except Charly swiped my bacon.  It was nice to watch the snow fall outside the restaurant and snuggle on the corner bench seat with Charlotte. We chatted about school and dance class, about games on the iPad, and we talked about what she wants from Santa (she says she doesn’t have one thing she REALLY wants, and would be happy with a surprise).  We finished our brunch, and started the drive home.  We had to make a stop so I could pick up a booth backdrop I purchased for work, and we made it home by 1pm.