October 20, 2021

 

We are back at the hospital for in-patient (2 of 4) of this current phase. Aurelia and I left Girona yesterday at 6am and had a pretty calm day yesterday. Blood work, doctor visit, chemo, school work, Zumba videos for exercise, and some Netflix before bed. We are even in a room that has two actual beds!! Most of the rooms have a bed for her and a chair/couch thing that parents sleep on, so sleeping on a true bed last night felt luxurious. 

During these four hospital days Aurelia receives a high dose of methotrexate and this chemo is pretty intense, so she has to stay in the hospital for four days to make sure her body is excreting everything. Aurelia thinks it is hilarious that her urine is fluorescent yellow. 🤦🏻‍♀️ We have to make sure she uses the bathroom every couple of hours and they take samples to make sure it’s leaving her body. I guess the side effects can be pretty ínstense, but Aurelia didn’t have any issues last time so I hope she is okay this time. 

I have done a lot of reading about her various drugs and we try to give her foods and liquids that may help combat side effects. In our parent support group a lot of kids experienced toxic reactions to this drug, so I make sure she is very well hydrated and does some light exercise in the hospital to keep her systems moving. So far, so good. 

Right now Aurelia is working on her sea turtle report for school and we are waiting for them to take us for her lumbar puncture. This is when they inject the chemo in her spine to kill any cells that might be hiding and multiplying. I can’t imagine it’s very comfortable, but she handles it really well. 

At home in Girona we are trying to keep life as normal as possible. During the day she does schoolwork with me or on video with her teacher. She is able to ride her bike after school and can take the dog for short walks (1-3km is her comfort zone).

Last week we were given permission from the medical team to do an overnight at our flat up in the Pyrenees. It was just 24 hours, but it felt amazing to be out as a family. We did a short hike and Aurelia was thrilled to be away from home or the hospital for a night.

We have two more in-patient stays in November and then we begin the next phase in December. That phase will require Aurelia to be living closer to the hospital (with traffic it takes us 1.5-2 hrs from Girona). We have rented a great apartment right on the beach for December and January. Our plan is to split up during the week- one parent with Eston in Girona so he can be at school and one parent with Aurelia in Barcelona. Weekends will be spent together as a family in Barcelona and once school is out for winter break we will spend the holidays in Barcelona. The beach neighborhood where we rented is completely deserted in the winter, so Aurelia will be able to walk on the beach and ride her bike on the bike path quite freely and she is excited about living on the beach.

That’s about it. We thank everyone for the continued support and positive thoughts. Our girl is so strong and amazing!