July 20, 2022

 Yes, it’s the monthly Aurelia update. 

Aurelia has an implanted access port (easier to receive all chemo and other meds) and this limits a few summer activities. She is allowed to swim in the ocean (yay!!) and clean private pools are okay as well (thank goodness, as we have a pool). Public pools, lakes, streams, creeks, etc are off limits due to the higher probability of bacteria leading to an infection. 

Aurelia had her first swim in the Mediterranean in a year and she was pretty thrilled to swim and snorkel:

Annie and Sloane came to visit from Boulder! We are so thrilled they were able to visit and Aurelia really loved having them around. 

It feels like our life was on hiatus for a year, so it’s so nice to see our friends on a regular basis again.

We still have to stick fairly close to home due to Aurelia’s treatment schedule in Barcelona, but we are able to spend time at our place in the mountains as well. The challenging terrain was always something Aurelia loved, but it can make her frustrated now so we have sought ought easier routes when hiking.

Aurelia decided she wanted to have a pajama party with her friends to honor the one-year anniversary of her diagnosis. I know everyone in the cancer community thinks about this day in many different ways, but Aurelia was insistent on a celebration and we completely agreed. Of course, when all the girls were awake until 3am I felt differently, but they had a great time. The lack of rest really took a toll on Aurelia the following days, but she said it was worth it.

Aurelia and I love riding our vintage town bikes around our neighborhood. We found her bike at a nearby flea market and had a local mechanic fix it all up for her. 

Aurelia went to a day camp last week. Most kids attend a “casal” (day camp) in July as parents are still working (most people take the month of August off). Aurelia attended a music camp at her school (her choice) but in the end it wasn’t her favorite thing as there were a lot of new kids who were unfamiliar with the situation and she tired of explaining everything. She missed a couple of days because she was in Barcelona having chemo and another day because she was tired, so I’m not sure it was the best idea, but we tried. She did enjoy learning new songs on the piano.

We have planned a road trip to France next week to watch the women’s Tour de France, but first Aurelia will have treatment and a blood analysis this Friday. If her levels are good, we will continue with the trip and if they are not we will stay home and let her rest. It makes for somewhat complicated planning, but hopefully she is okay and we can go. I’ve mapped out all hospitals on our route in event of emergency and we will take it one day at a time. 

The side effects of chemotherapy vary from person to person depending on which stage they are in of treatment. Aurelia often has some nausea, but she is really good about taking her anti-nausea pills as soon as she wakes up and this seems to keep the nausea at bay for her. Fatigue is another thing. There are days when she feels very tired. Fortunately, Aurelia has always been an amazing sleeper and when she was a toddler she would just go out herself in bed when tired at night. She does the same thing now as she realizes how important sleep is for her recovery.

There are quite a few medications, but we have a good daily schedule for them. She takes her anti-nausea meds as soon as she wakes up. Each afternoon she takes a chemotherapy drug called Mercaptopurine. This drug has to be taken two hours after she eats/drinks and then she cannot eat/drink for another hour after having it. We set a timer after her afternoon meal and then she can have the meds and after an hour she has a little snack. Once a week she takes an additional chemotherapy drug in pill form. Three times a week she takes an antibiotic to prevent bacterial infections and each day she takes calcium and vitamin D. We have other meds for other side effects, but she hasn’t needed them much recently. It can feel overwhelming, but we keep a list on the fridge and we have a couple baskets in the kitchen for all of her medicines and syringes, etc. Each week we do an inventory to see what we need and our local pharmacy is amazing with ordering us multiples of things so we don’t run out. We have a great public health system here, so all of her medicine is either free or extremely inexpensive (one medicine was 27 cents). 

We are in month 5 of maintenance and in another month (give or take) her monthly chemo treatments will change slightly. She currently takes chemo at home once a week and at the hospital twice a month. If all goes well she will continue with the weekly chemo at home and cut back to once a month at the hospital. These changes are all dependent on how her levels are and we’ve learned that the time line can easily change based on how her body is handling everything. Thankfully she has been pretty strong for the most part and we hope it can continue.