One Year Off Treatment: FAQs

Here we are--officially one year off treatment! In some ways, that feels hard to believe--time has flown! In other ways, it seems like it's taken awhile to get here. Either way, I thought now would be a good time to update this blog. It will give me a chance to reflect and think back on all we've walked through as a family and where we are currently. My goal is to write as honestly and openly as I can. I'm going to do this in a FAQ style again (similar to the blog post on January 31, 2021). I will start with some of the most common questions people ask. 

How is Joy doing? 

The short answer is she is doing really well! She finished treatment on February 4, 2023 and then rang the bell a few days later on February 7th. It was an emotional moment. I will share a quick video in case you'd like to see that celebratory day. I can't really put into words what it was like. We had been waiting for that moment for so long and to be surrounded by our family and closest friends, doctors, nurses--it was just incredibly special.

We are so grateful Joy is better! For years, I've watched her body struggle to make enough platelets or white blood cells. But her bone marrow is recovering nicely off chemo, and her labs have been looking great. We did have a scare in January 2024 when she developed a large, swollen lymph node on the right side of her neck. Doctors think it was a result of a viral illness, but that definitely was frightening to see. It's actually still there a month later but looks smaller. We go back to clinic in a week so she'll get eyes on it again.

She does have some post-treatment struggles that I don't talk about too often. She had a little neuropathy in her legs in the months following the end of chemo. In November of 2023, she was officially diagnosed with generalized anxiety disorder and a slower than normal processing speed. I really believe she developed this because of the trauma of cancer treatment, but there is no going back and undoing what was done to her. Instead, we move forward. She will have a 504 plan in place at school to give her supports where she needs them. She still meets monthly with a therapist. 

Joy is loving kindergarten and even learned how to ride a bike in gym class! It makes my heart so happy to see her excited to go to school and thrive in such a wonderful, supportive learning environment. 

How are the boys doing? 

The boys are growing up so much! They have always been such troopers throughout Joy's hardships, and that is still the case. They love her and support her and yet still get annoyed by her like any sibling relationship. :)

Cam will be 17 in May and is driving all over. That has come in handy when I need him to pick up something or take himself to a band practice. Ian is in 7th grade and is working really hard to earn straight A's and become the best trumpet/French horn player he can be. 

Both boys serve at church by helping greet guests, praying for people, playing in the worship band, or working in kids' ministry. 

How are you doing? How's Jordan?

This is complicated for me so I'll come back to this one.

As for Jordan, he keeps himself busy with work and church responsibilities. He also takes on most of the cooking and laundry in our house. I sure do love this man and thank God every day for giving me such an amazing best friend.

Are you still going to the hospital for Joy? 

That's the thing about after the bell ringing--many people assume life can just resume and go 'back to normal.' But there is no returning to normal. Life is forever altered when there's a cancer diagnosis. 

So after Joy rang the bell in February of 2023, we were right back at the hospital in March (port removal surgery), and in April (for labs/exam), and in May (for labs/exam), and in June (for labs/exam), etc. We went every month for one year. Visits now will be every other month. Eventually they will get more spread out. At each visit, Joy gets a full exam, her growth is measured, and because she had blood cancer--she receives a blood draw. So each visit, we hold our breath until labs come in and it is confirmed she is still in remission.

What has life been like with no more chemo?

Life off chemo has been great. Joy has more energy. She sleeps better and eats (a little) better. Jordan and I are not worried about crushing pills or stressing about whether we skipped a dose. The day Joy's port came out in March was a glorious day. No more fever protocols. Now when she gets a fever, we treat with Tylenol. We don't have to drop everything and head to the ER. 

Joy was on chemo for more than 800 days. That is mind-blowing when I really think about it! The funny thing about chemo is that it killed her cancer and was almost a safety net throughout those years keeping the cancer away. One day we just stopped giving it to her and had to trust that it did its job. That is a little nerve-wracking and honestly maybe I'm still processing that---believing that God in His power healed her and used science/medicine/doctors to do the job. She doesn't need chemotherapy anymore and that is simply wonderful to say.

Ok, so how are you really doing?

The day after Joy rang the bell, I went to work. Most of you readers know I am a school librarian. We had a half day with students and then an in-service in the afternoon. I remember feeling so incredibly fatigued by around 11 a.m. that I asked my principal if I could leave when the students left. 

It was like the weight of the past 2.5 years came crashing down all of a sudden. I went home and slept all afternoon and evening. Literally 16 hours straight.

When you're in survival mode for so long, it does something to you. PTSD is real. My blood pressure is on the higher side. I've had aches and pains, graying hair, and I've noticed when I get sick, it tends to just stick around longer. I'm pretty sure I aged 5 years. It's also hard for me to focus. 

Another cancer mom shared that since her child's diagnosis, treatment, and post-treatment period, she has become an almost-there type of person. Like her house is almost-clean, the do-list is almost done, everything is almost good....

I really connected with that almost feeling--like a piece of me that was once there is gone or altered/changed, and I am trying to relearn how to do life with this new version of Nikki. Maybe that's what growth is all about? Learning how to move forward. Not forgetting where we came from. Helping others along the way.

While I'm saying that the past few years have affected me physically and mentally, some people say they think I look 'lighter' and more refreshed than I have in awhile. Maybe that's a little true. I mean, I am only having to manage the one appointment a month now and not the daily medication. I'm sleeping more through the night. I'm seeing my little girl thrive in ways that make my heart smile. 

Whatever the case, I know each morning I am thankful for another day with my family and putting my hope in God who knows all things and who loves Joy (and all of us) more than we can ever imagine.

What now? 

That is the million dollar question. I recently listened to a podcast called Joy in the Journey led by our friend, Jamie Freedlund, and was challenged to ask instead of why me or why us...what now? What do I do with this? How do I move forward? 

We will never understand why Joy got cancer...why some children survive and others lose their lives. So instead of focusing on the why, I am trying to shift my mindset to what now? 

Maybe it's to help continue the mission of the wonderful organizations that are out there for pediatric cancer patients, maybe it's to continue to write, maybe it's to help parents who are going through it. 

All I can do is keep looking forward, taking the lessons I've learned into the next chapter of my life.

I will close this post with some pictures from 2023--the year of celebrating and healing. We made so many memories that I will cherish forever. 

What.a.journey!