December 22, 2021

 

From the beginning of this journey we were told various things about each phase from our medical team, the many books we have read, the support groups, etc. We were told how tough induction was, how the HDMTX would be awful and all sorts of other things. Quite frankly, Aurelia never had much a struggle with any of it, so we just continued on our way feeling grateful things were uneventful. We were warned that this current Delayed Intensification phase was rough and this warning holds true. Incredibly true. A little over a week ago Aurelia started to feel quite crummy. She now has very little energy and is irritable. It became a struggle for her to do schoolwork, ride her bike, hike...all of the things we have been able to do without much effort. I suppose this day was eventually going to arrive, so I am grateful it has taken months.

Our original plan was for Rory and I to take turns being here in Barcelona with Aurelia and Eston in Girona, but last week he called me and asked me to come to Barcelona to help with her care. I am incredibly grateful to all of our friends who offered to help with Eston and he is happily staying in Girona until tomorrow.

Aurelia has her next round of chemo on Friday, which is Christmas Eve. Kind of a bummer to have treatment then, but cancer does not care about holidays. The doxorubicin (often called "The Red Devil") has caused most of her hair to fall out again, so we are back to wearing head scarves and hats. A few months ago Aurelia and I bought some beautiful vintage silk scarves on eBay so at least the scarves are fun to wear.

Her appetite has not changed and she is still tearing through cookbooks for new recipes and is constantly making shopping lists for me. This child has always adored food and she continues to eat well. She has not had a problem with vomiting or nausea, just fatigue and headaches. Reading gives her a headache after 30 minutes or so, but we are listening to tons of audiobooks. She has been listening to a lot of books set in the USA and has come up with some odd things for me to cook---like fried chicken. It was mentioned in a book and she assumed this was a common thing eaten by all people in the USA. I explained to her that it was only common in certain regions of the country and tried to make her a healthy version of fried chicken. 

I am trying to keep her busy with sewing projects and arts and crafts since she cannot ride or walk as much as normal. We spend hours doing laundry and cleaning things daily as we do not want her to get ill and end up in the hospital. That is my daily goal---stay out of the hospital. Keep eating healthy, keep moving, keep cleaning and keep her out of the hospital. On sunny days we walk a bit the beach and play with Laia, our dog, and find seashells. 

With zero complications this phase will end on January 11, but by now we know that never happens, so we have rented the beach apartment until the end of January and hope to be home by then. 

Thank you to all of our friends and family who have been so incredibly supportive. We feel surrounded with love and your messages of support mean so much to all of us.