June 22, 2022

 We are a couple days away from the one-year anniversary of Aurelia’s diagnosis. Today is the last day of school and the kids begrudgingly stood still for three seconds so I could take a photo:

In my parent support group there is a lot of talk about the maintenance phase of treatment. It seems that medical teams all over the world make this phase of treatment out to be a breeze, but the parents recognize this is because they want to get through frontline treatment in a successful and positive way. We are pretty lucky in that Aurelia has been in school and doing fairly well, but I think the realities of cancer hit like a bag of bricks in this phase.

We honestly didn’t have much time to sit and ponder things in frontline. It’s constant hospital stays, chemo, tests, etc. We can’t even remember half of it, nor do we want to. Now things have slowed and the questions of the future loom larger. Chemotherapy has side effects. A lot of them. While many made their appearance during frontline, we now realize the full magnitude of these effects and nobody is ever sure what will remain and what will disappear after treatment.

The brain fog seems to be subsiding, which is great news. I was super worried about this, but neurological and cognitive testing isn’t carried out until after treatment, so there wasn’t much we could do but wait. There are some slight discrepancies with some of her reading skills, but I’m confident we can overcome that with some specific practice.

Her body-ligaments, joints, muscles- have taken a huge hit from all the chemo. Aurelia loved being a strong athlete and we just don’t know what her body will be capable of in the coming years. As an active family, this is hard, but we just change our expectations and accept what we can do. Aurelia is struggling to accept these changes. She is reluctant to resume any of her sport clubs and told me she does not wish to participate if she cannot be one of the best and win races. As a parent and an athlete, this breaks my heart. Cancer has taken so much from her and it’s now taken her love of outdoors and sport. She still joins me for short hikes and bike rides, but I can sense her frustration because her body can’t do what it once did.

The many chemo drugs and other medications can alter personalities in ways that are unexpected and without sport as an outlet, Aurelia has a lot of frustrations. She has always had a strong personality, but we are seeing some strong aggressive behavior daily now and it’s a struggle. I know this is common for younger kids fighting cancer and she has had various mentors and therapies, but we are searching for something that resonates a bit better for her. I’ve been reading lots of books about helping family members with cancer and then Aurelia reads the book and declares it incorrect and a waste of our time (and most of the time she isn’t wrong 😂).

Last week we woke up and Aurelia was in the kitchen on my computer looking at the required admissions for Harvard Medical School. She became extremely angry when she realized admission is very competitive and she informed me she was going to cure cancer and she didn’t need Harvard to do it but she would write them a letter telling them they should just admit her so she could get on with finding a cure because she doesn’t have time for all of these admission tests. Yes, this is a funny and cute story. But this is but one example of the situations in which she becomes extremely agitated (this time with Harvard admissions) and we struggle to calm her down. She has a few different books and fidget toys in a basket and sometimes she uses them and it calms her, but on this occasion I heard about the atrocities of medical school entrance exams all morning. So yes, the journey continues.

When we first met with Aurelia’s medical team nearly a year ago to map out her treatment the maintenance phase seemed like a far off dream. We are incredibly grateful to be at this point, but there are still a lot of limitations. Summer is here and we are fortunate to be in a position to travel, but we must be within an hour of a hospital that can access Aurelia’s port in event she was to become ill or struggle with treatment. Her counts can go down at any time, so plans are never solid and need to be flexible. We’ve had to change a couple of trips due to her treatment schedule and while we are hoping to take a road trip to watch the Tour de France Femmes, it might not happen if her counts are low.

Despite the challenges and realities of the situation, we are putting our best foot forward with each day. We are grateful for each day because we simply don’t know what the future may bring. Our summer days will be spent enjoying the wonderful place we call home and we look forward to fun days at the beach and in the mountains. Our warrior may be driving us a little crazy, but it is her fierceness that allows her to fight this disease with such strength. ❤️







Comments

Post a Comment

Popular posts from this blog

July 13, 2021

Image
I arrived at the hospital a few hours ago (aurelia is having her snack and watching master chef) and we have great news from the oncology team. When Aurelia was first diagnosed her sample cells were 92% cancer and now that number is 1%. There is a long road of treatment ahead (approximately two years), but these numbers give everyone a huge boost and so much hope. Aurelia is not the least bit surprised as “she knew she was killing the cancer.” So there you have it. Aurelia is working really hard with the physio to start walking again. She does several sessions a day and we are trying to get her inflamed nerves back to where they need to be so she can start walking. Now that her blood is healing itself, we hope her bones and nerves will follow. A few people have asked me about sending cards or postcards. Aurelia loves getting postcards! The best place to send them is to Federal, our restaurant in Girona.  Aurelia Sutherland Federal Café Girona C/Forca, 9 Girona 17004 Spain 
Read more

November 4, 2022

Image
 Aurelia continues to fight and win! This long phase is called maintenance and her medical team tries to keep her counts within a certain range and the chemotherapy is adjusted according to her blood counts. Too low is too much chemotherapy and too high is not enough, so they look for a certain range in every visit. The last month Aurelia’s bloods have been incredibly good…but this also means they give her more chemotherapy to bring the counts back into the range. I know it sounds odd, but this is the protocol that has proved successful for decades so we continue our fight. I know it’s hard for Aurelia to hear that we have to increase chemotherapy because her counts are so good, but I present it in a way so she knows she is stronger than the disease and a step ahead of it. Sometimes it works and other times she rolls her eyes at me. 😊 We continue to notice gains with her stability and strength. She gets frustrated, but she keeps going with her physiotherapy and running and riding....
Read more

August 19, 2022

Image
 Today is a big day: Aurelia’s final lumbar puncture! For the past year Aurelia has had monthly intrathecal chemotherapy. This is when she is out under general anesthesia and chemotherapy is injected into the fluid around her spinal column. As you can imagine, it’s not her favorite treatment, so she is thrilled that today is the last spinal! We were able to go on our road trip to France, which was amazing since we haven’t traveled much between COVID and cancer. It was a lot of energy, but Aurelia did her best. We ended our trip a day early as she wasn’t feeling that well and we didn’t want to push things too much. It was easier to leave the race and just drive home so she could rest, so that’s what we did. Aurelia was thrilled to wear all of the special jerseys given to her the past year. She had a different jersey for each day we were there. ❤️ We have been trying to have as normal of a summer as possible between hospital appointments and chemotherapy. Beach days, bike rides, shor...
Read more