A month ago today we celebrated Joanna’s NED status with her bell ringing at the Jimmy Everest Center for Cancer and Blood Diseases in Children. Yay for celebrations! So, I thought I’d take a moment to give a bit of an update about how things are going.
This means we’re one month closer to that first set of 3 month scans and labs. “Scans” is one of those words that has a ton of meaning going on behind the 5 letters. Some of that stuff includes the memory of our last time getting an IV, which was not smooth. Also, the knowledge/fear that these scans are to see if the cancer is still gone. They wouldn’t be doing this checking if so many that have gone before us haven’t been through the horror of recurrence. While we’re not expecting that and we’re hopeful and confident in the treatment she endured ‘s effectiveness, we also didn’t expect our 9 year old to have cancer, so the anxiety is very real.
There are 3 scans that we’re expecting in February – the MRI with contrast of her head -this is that one that requires an IV. There’s an extra layer of complication/frustration for this one. Even though her treatment is at the Children’s Hospital, she has been unable to have any of her MRIs there. They’ve said that they reserve those MRI machines for the kids that have to be sedated, so she’s had to go other facilities. So, that means she has extra travel and stress, and misses out on some of the work that happens at Children’s to make scans better for kiddos.
The second is a chest X-ray -she had one of those last month and it went super smooth. It was quick, and the staff at Children’s handled her questions and made her comfortable.
The 3rd is an ultrasound -a new one for her. So, though there isn’t an IV involved, it’s something new in a hospital, so that can be tough.
And, then the labs. Though the pokes aren’t fun, our girl loves that lab staff. They’ve done an excellent job of giving her the ability to choose as much as possible about what happens to her body. She even has a favorite phlebotomist who does the blood draw for her. We’re looking forward to these results helping us know how her body is recovering from the chemo, how close her immune system is back to normal.
It’s been great to have a month without hospital visits! Instead of weekly (and daily for the month of radiation) trips downtown to the hospital, we’ve been able to get some flexibility back in our schedule. We’ve enjoyed getting back to more school, visiting the zoo, raking leaves, and some holiday traditions.
Yet, it’s been tough. It’s easy to think “treatment is done, she’s fine now, right?” You can see her hair coming back in – yay for it being the same color as before. She sure wishes it would come in faster. Yet, she’s not quite back to normal yet. Her immune system isn’t what it was before -so in this cold/flu season within a pandemic, that means we’re doing what we can to continue to keep her healthy. She can’t yet fight off germs like the rest of us can. So, no crowds indoors for us. Masks wherever we go. She’s also still regaining endurance -while she can run and play and rake, she gets out of breath quicker than before. On a positive note, more and more things are tasting good again!
And, honestly, it’s pretty lonely. As much as it wasn’t fun going to the hospital, each week we saw our friends in the lab, we saw the child life staff who knew us and loved on our girl, and we had great nurses that cared for us. Now we can go weeks without having those type of in-person interactions or conversations with others. Though it seems everyone around us has resumed their pre-covid schedules, there are still a lot of things that we used to do that just aren’t back on our calendar yet, and that’s feeling tough.
We are so, so thankful for this first month of “no more chemo” as Joanna would say!