Friday, July 14, 2017

Appointments Recap

This week, we returned to Cincinnati for our new normal of quarterly scans and appointments. Tillery had her tumor debulking surgery March 10th so this was our first imaging since the day after surgery. It's the first time to look at imaging when we were done with treatment and had no future plans for treatment.

The big news: The Tumor is Stable!

We had 4 appointments Thursday and while the biggie was the MRI, we had other questions and items on our agenda.

First up was a neurology appointment. Tillery has been on an anti-seizure med since she was 15 months old, when she was diagnosed with a tumor. At the time, it was given as a preventative medication since they did back-to-back brain surgeries and weren't sure how she would respond. She doesn't have a confirmed seizure history but there is a possibility that she had a seizure in-route to the hospital after her fall in November 2014. Since she's had no other seizure activity, we wanted to talk about weaning off of this medication. The neurologist is ordering an EEG of her brain when we come up for our next MRI to see if there is any activity that makes her feel that Tillery needs to stay on the medication. If not, we will begin weaning following our next appointments.

Next, we had her MRI. Tillery's port was accessed before we went to radiology and they decided to have me carry her into the MRI room and they would put her to sleep using her port. They cleaned her line that they had pulled behind her back and then said, "Mom, hold her tight." I gave her a big hug and said, "I love you, Til." She squeezed me back and said, "I love you, too, Mom!" and then went completely limp. It was a sweet moment until she started to thrash around and make a moaning sound and I remembered why I hate holding her while she is put under anesthesia. Then she finally stopped moving and the nurses helped me to gently lay her on the table.

I went to the cafeteria and had lunch with some friends while Tillery was in the MRI machine. About an hour later, the radiology nurse called to tell me she was starting to wake up. I went down the hallway to the recovery room and before I got to the door to knock, I could hear the screaming and I knew Til was awake. Tillery is either sluggish to wake up and we end up hanging out in recovery for an hour waiting for her to wake and nibble a cracker OR she wakes up like a firecracker and is mad and ready to go. Well, this time, she woke up mad as a hornet! When I got around to her bed, she was trying to sit up and was yelling about wanting to leave. But don't imagine a typical mad 4 year old, this was like a drunk 4 year old. She was slurring her speech, couldn't keep her eyes opened for long, and couldn't hold her weight up so she kept falling back on the bed. I got her in my lap in a rocking chair and tried to calm her but she just kept fighting me, too. She wanted a drink and when they brought her a sippy cup she yelled, "Not in a baby bottle!" then she squirted a juice box all over herself. They wanted to see her eat something but they want you to start with a saltine. Tillery didn't want a saltine, she called them "boring crackers". After I got her to eat one, still fussing, I asked the nurse if I could give her something else. When he agreed, I handed her a bag of Cheeto's and she cheered. She started stuffing them in her mouth as fast as she could! The nurse asked if I could have her slow down and I said, "No, I really can't." She perked right up and was ready to head off to the next appointment!

Next up was oncology, where Tillery's oncologist had already viewed initial imaging. The tumor was stable!! This meant that we could discuss our topic of the day for oncology - removing the port! Our Cincinnati oncology team will reach out to our East Tennessee Children's team to have them schedule a local outpatient procedure to remove her port. The port that delivered weekly poison into her bloodstream will be taken out and Tillery will have one less foreign object in her little body. It's one step closer to normalcy. Tillery can get a 100.5 temperature and we won't have to rush to the ER and she can finally go to the dentist for a teeth cleaning, without worry of germs. Once the port is removed, we won't have a need to go back to the hospital except for the quarterly follow ups. No more monthly pokes!

The final appointment of the day was neurosurgery. We already heard the tumor was stable but we had one other reason to meet with neurosurgery - an uneven bone flap! The bone flap on Tillery's left side hasn't fused perfectly since her March surgery. When the tumor was removed, the negative pressure caused her bone flap to sink in when it was replaced. Luckily, Tillery's surgeon feels like the bone is fused strong enough to not cause a safety concern. At this time, it's just a cosmetic issue. Because it's possible that Tillery will need future surgeries, we would look to correct the issue at that time. So for now, we are cleared from neurosurgery for 6 months.

It was a long day of appointments but overall was a day of good news. We will schedule a port removal soon and won't go back to Cincinnati until October. We are excited to continue life on this side. We might not be "normal" but we are pretty darn close!

We love how well Tillery is doing but we will never shake the images of all we have seen. Our daughter has been really sick and we've seen many other really sick children. We've lost friends to childhood cancer and we will never forget. September is Childhood Cancer Awareness Month and we already have our fundraising link live. To join us in finding a cure, click the link here or email us at