Força Aurelia

Yesterday Aurelia went in for her bone marrow sample. They put her under general anesthesia and take a sample in her back or hip area. Aurelia is not a huge fan of general anesthesia and told me the doctors should just use a numbing cream and then “she could take the pain.” I told her she was welcome to chat with her doctors, but in the end she agreed that being asleep might be for the best. The whole process only takes 20-30 minutes so she was done quickly and in recovery. One parent is allowed in the room with her until she falls asleep and then we have to wait in recovery for her. Here she is coming out of the OR and into recovery: She felt absolutely fine, so we were allowed to leave after an hour or so. Aurelia was thrilled to go to Federal and sit in the private area and have some lunch: She felt well enough to do a bit of schoolwork (she even had a video lesson with her class at the hospital) and rested at home for the afternoon. The results of the bone marrow have come back and...

 Aurelia and I went down to Barcelona yesterday for a chemo treatment. This particular treatment requires an overnight stay and Rory is away for two weeks, so I spent Thursday organizing all logistics for Eston and Laia (our dog). Thank you to all the friends who have been helping me, especially when Rory is gone! Aurelia and I left Girona at 6am on Friday hoping that her numbers would be high enough for treatment. Her bloods were done by 8am and by 11:30 they told us she was high enough to have treatment and spend the night. Aurelia was really relieved as she has been on a chemo hold for nearly two weeks and she was over it. They began her chemo treatment once we were upstairs in our room for the night. Aurelia was bored so she walked laps around the room with the medicine pole thing. After treatment her favorite physio came in and they did a solid physio session. Aurelia was a bit tired after that so we watched a movie and just relaxed. Sleeping in the hospital is never super res...

 We returned to our home in Girona almost two weeks ago. Eston and I went a day early and spent the day washing every couch cushion, pillow, blanket, surface, wall, etc. We set up the air purifiers and went to the market for fresh food and restocked the house and had everything ready for her return. It was emotional when Aurelia came home as she left on June 23 for a pediatrician appointment and didn’t return. She was thrilled to be in her room with her books and art supplies, sleep in her own bed…and just be. It’s been a busy two weeks. Aurelia still has appointments in Barcelona 2-3x a week right now, so we have had early mornings (it’s about 1 hour and 20 mins to the hospital in Barcelona). We are on a chemo hold right now, so we come down to the hospital every few days for her blood analysis and hope her numbers are high enough to continue chemotherapy. For the past week she has not been high enough, so we have to wait. I am at the hospital with her now and she just had her blo...

 We are about to start the last chemo block of August and we can hopefully take Aurelia back to Girona on Saturday. She will have two weeks “off” (with a few dr appts) and then begin the next phase.  Our next phase will be 11 days at home in Girona and then 4 days as an inpatient at the hospital in Barcelona. This phase will continue until mid-November (11 days off/4 on) and our plan is to take turns with the hospital stays. One of us will go spend the days/nights in the hospital with Aurelia and the other will stay home in Girona with Eston.  The phase that begins in mid-November will require Aurelia to be in Barcelona, so we are figuring that out with Eston and school and such. We want his life to remain as normal as possible in Girona as we navigate through this process. Aurelia is doing well. She still has yet to experience most side effects, though her hair is now nearly gone. I bought her a few head scarves and hats and wigs to figure out what she prefers. She still...

Aurelia continues to handle the chemotherapy and other treatments to the best of her ability. Four days a week we are at the hospital and her treatment takes about an hour or so. We spend another 1.5 hours with the physio and also have visits with the oncologist. All of her numbers continue to improve and we feel incredibly grateful. Her hair has been intact thus far but we have noticed a change in the last day. She is definitely starting to lose her hair now and we’ve had a long chat with her about it. The hospital psychiatrist suggests not making any huge changes until she is ready so we will just put her hair in a ponytail and hope for the best. 🙂 Aurelia has not felt many side effects other than a little nausea here and there. Of course, with Covid we can’t take her out and about due to the high risk of infection. We have not seen anyone or done anything but Eston starts school next month so hopefully her immune system can handle it. We have focused on nutrition a great deal to ke...

 Not much to report, which I suppose is a good thing. Aurelia is at the rental house in Barcelona with us and she goes to the hospital daily for her chemotherapy and physio therapy. The new chemotherapy has given her a few stomachaches, but that’s about it. She feels good and has a lot of energy until dinner time. After dinner she is ready to sleep! If things keep going well we will be allowed to return to Girona for September and October. During this block Aurelia will have 11 days at home in Girona and then 4 days of inpatient chemotherapy at the hospital in Barcelona. In November we will have to return to live in Barcelona and we hope to come back to the house we are currently renting as it is 5 minutes from the hospital. One of us will drive Eston to school in Girona. It’s not ideal, but it’s only for a few weeks and we decided as a family to stay together. When Aurelia is home she does all of her normal activities- ping pong with Eston, arts and crafts, cooking and baking with...

 It’s been a busy week! On Monday afternoon we left the hospital after 34 days of being inpatient! Yay! We also moved from a city apartment to a house closer to hospital so everyone is enjoying having some space and not being right in the city, which is clogged with tourists in August as all of Europe takes a holiday. Aurelia had her bone marrow sample yesterday and we are thrilled that there was no evidence of disease. This result was expected based on her blood work, but it’s great to have the confirmation.  This great news does not change the course of treatment. Most kids with ALL are cancer free after 30 days and the next 1.5 years will be spent keeping the cancer from returning. Today we are back at the hospital to begin the next round of treatment, but we are outpatient now so we don’t have to spend the night.  Eston and Aurelia were finally reunited on Monday. Due to covid and oncology restrictions she could not have visitors at the hospital, so it was super emoti...