Tuesday, Knoxville schools were closed for weather and everywhere between here and Cincinnati looked snowy. The trip took longer than usual and was more intense than normal because of weather but we arrived safely Tuesday afternoon to our "home away from home".
Wednesday morning, we headed to the hospital for imaging. In addition to the normal brain MRI to measure and evaluate the tumor, she also had a 3D head CT to get a good look at the bone flap on the left side. Tillery has had many CT scans taken over the past 3 years and never needed to be under anesthesia. This time, however, when we tried to lay her on the table she had a total meltdown. The longer we are away from the hospital setting, the more things affect her and it makes me wonder what flashbacks she might be experiencing and what fears she has in her little mind. Add CT tables to the list of things that now give Tillery anxiety.
The team quickly decided that we had time and an anesthesia team already on hand so we took a breather and came back to the room and with me sitting on the table with her and a friendly Child Life Specialist holding an iPad for distraction, the anesthesiologist covered her mouth and nose with a mask and she calmly drifted to sleep. She's been put under anesthesia so many times and while it's still hard to leave her like that for a surgery, I'm pretty comfortable with the routine in radiology. I kiss her head, have nurses help me slide off the table and ease her down, and I head of to the cafeteria and gift shop for an hour while she's having her pictures taken.
After imaging, Tillery either takes her time waking up and drifts in and out for a bit while I sit in a rocking chair beside her waiting for her to finally be ready to wake. OR, she wakes up abruptly and fighting mad! This time, it was the latter and when I walked into the room, she was sitting up with the aide of 2 nurses and she was shouting sounds that didn't make any sense. They were removing the IV and she seemed to want to get out of the bed. Once they were done, I picked up my floppy ragdoll 4 year old and sat with her in my lap trying to calm her while she moaned. They never let us leave until they see her take a sip of juice and a bite of cracker but Tillery and I have a different tradition. I buy a bag of Cheetos in the cafeteria and smuggle them in to her for when she wakes up. She finally stopped making sounds when she saw the Cheetos and she ate a little snack while they ordered someone from transport to bring a wheelchair for us. We were wheeled up to the 8th floor to the neurosurgery department to have her shunt checked (magnets can alter the settings of a shunt and an MRI is like a giant magnet bed).
One of our regular nurse practitioners brought us back to check shunt settings and while we were in there she said, "Well, the tumor looks good." (This is always a statement that needs a little clarification.) Good like stable? YES! While I was thrilled to hear this, I decided to not fully believe it until I had the radiology report in my hands, which would happen the next morning.
Michelle also pulled up the 3d head CT. Now, we have seen Tillery's skull and brain from every possible angle. We have seen side by side images of pre and post surgery and compared past imaging to current imaging. We have seen CTs, MRIs, and x-rays, but we have never seen a 3D image. This scan blew my mind! We can look from any angle at exactly what her skull looks like. (I'm sharing imaging at the bottom of this post so if you aren't into looking a medical imaging, you can ignore but it really is cool to see what medical advancements have given us and how this image is helping us to make an educated decision about Tillery's care.)
Thursday was our long day of appointments with the full team. In addition to talking tumor and bone flap, we had a lot of other things to talk about. Being a cancer survivor comes with a long list of concerns, questions, and odd happenings. So here's a list of the things discussed and where we stand on things:
- The Tumor is Stable! While shrinking or gone seem like better options, in the cancer world, stable is still reason to celebrate.
- Tillery's g-tube site is doing something weird. Her tube was removed 1.5 years ago and last week, it started shooting out a clear liquid. After discussions and consulting with other departments, we are having a follow up appointment scheduled with general surgery to determine if there is any further action (like stitches, etc) that needs to happen.
- Tillery has a neuro-psychological evaluation scheduled in 2 weeks. This is standard for kids with brain tumors and timing is good as we talk about school options for next year. This testing will give us insight into learning delays/struggles and any other cognitive/developmental issues that we might run into in the future.
- In addition to the neuro-psych testing, we discussed Tillery's emotions. We are fully aware that 4 year old little girls are known for being overly dramatic but when your child also has a brain tumor in the cortex of the brain that controls emotion and has experienced trauma to the brain, everyone is a little more cautious about calling emotional outbursts "normal". It's difficult for Joe and I to parent because we don't know what Tillery is able to control vs. what is out of her control. Sometimes it seems like she can't "pull herself together" and we aren't sure if she is fully able to. So, when we are back in town in 2 weeks, we will also see a child psychologist to discuss what's going on and get a game plan to help her with coping and us with parenting/disciplining.
- Tillery loves school and is in a great program but we don't feel like she's where she needs to be with her learning. We don't know if the reason she doesn't write letters, name shapes, or count to 10 is simply because she chooses not to or because she doesn't understand. The above testing and evaluations will help with that but we are also going to talk with the school liaison from the oncology department and have her help advise us on possibly looking into special services for Tillery in school. She will also be able to communicate directly with the school to help coordinate any testing or services that might be needed.
The last appointment of the day was with neurosurgery. After looking at the CT from the day before, I felt sure Dr. V was going to tell us surgery was necessary. Instead, he came to us with 2 options: Do a surgery or Don't do a surgery. (Love when options are made to sound so easy.)
Tillery's left bone flap is basically an island. The bone is not connected anywhere to the rest of the skull. If it were touching bone to bone, it could fuse and the bone piece could continue to grow with the rest of the skull. As it stands now, the rest of her skull will continue to grow and that piece will stay the same size. It could also become softer over time. That piece is much more likely to fracture or even shatter if she experienced a head trauma (think falling down stairs, playground fall, car wreck). Without the surgery, she could be completely fine and she may never experience trauma and may never have problems. BUT, over time, that piece could chip or fracture and it could become necessary for surgery. If it's revised now, the bone can be moved forward to allow for it to fuse and grow and keep her own bone but if we wait, her bone may be too small or too soft and it may be necessary to use a synthetic piece instead. If we don't do the surgery and she experienced head trauma, her chances of serious consequences are increased. BUT, if we do the surgery now, she could later experience tumor growth that would then give us a reason to go back in on that side. Future surgery could cause this same problem or could give us an excuse to fix this without an additional surgery. In the end, there is no right or wrong but we are leaning toward going ahead and fixing it.
Having a medically fragile child is hard. Tillery appears so healthy and seeing her with peers, you may not know her history. But knowing her history makes it hard to see her with peers. We know that if she falls on the playground, what could mean a broken bone for another kid could be fatal for ours. If she takes a tumble down stairs, we hold our breath and hope she hits on her face because that's the safest place on her head to hit. If other kids are running and jumping, we get nervous about her keeping her balance amid it. I don't know that our fears will ever fully leave us but every little thing we can do to lessen them, we try to do.
Overall, this was a good quarterly appointment. We will be back in 2 weeks for some other follow ups and for the neuro-psych appointments. Then we will return in 3 months to do all these appointments again. At our next quarterly appointment, if the tumor is stable, we can then space appointments out to every 4 months.
Below are a few pics from our trip and the promised CT images.
We are also gearing up for the 2nd annual Tillery's Hustle for Hope 5k in May and getting churches signed up for Go Gray Sunday. Links for both are below as well.
Thanks for your prayers and support!
Tillery's Hustle for Hope 5k Registration: https://runsignup.com/Race/TN/Knoxville/TillerysHustleforHope5k?remMeAttempt=
Go Gray Sunday: https://www.alexslemonade.org/mypage/1403307
Settling in for a long day of appointments: Snack, remote, camera, thermometer
Checking to make sure the map is correct.
The left side of this image (right side of her skull) is the synthetic bone flap that was placed about a year and a half ago. The right side of this image (left side of her skull) is the sunken bone flap we are currently concerned with.
This is the left side bone flap. You can see that the bone seems to be "floating" not connected to skull bone.