Sunday, December 11, 2016


Tomorrow, I will pick Tillery up from school and bring her home.

I will not put numbing cream on her chest under a layer of Glad Press 'n Seal.

I will not have a conversation with the parking attendant at the hospital who is always a smiling face, even on hard days.

Tillery will not ask the lady at registration for a princess sticker for her hospital wristband.

She will not have her vitals taken and I will not review her medications list with the nurse to confirm date and time of last given doses.

Tillery won't pace around the nurses station looking for the "iPad lady" to invite her to come to our room.

We won't see any nurses, doctors, social workers, or chaplains.

Tomorrow, Tillery will not be given chemotherapy.

Next week is Tillery's first appointment free week since diagnosis day, September 30, 2014. Tillery doesn't have another scheduled appointment for 6 weeks. This is the beginning of a new phase for us. While it sounds nice and almost like normal, here is a glimpse of our future...

We are anticipating another major brain surgery in early 2017. This surgery will be lengthy and will involve a long list of risks and possible side effects. We cannot predict what recovery from that surgery will look like or how long our stay in Cincinnati might be following it. We know that Tillery's tumor cannot fully be removed but debulking as much as possible is very important, especially if later growth occurs.

After surgery (probably in February), we will return to Cincinnati quarterly for MRI scans of her brain. With each scan, we will hold our breath and pray for stability. As we see stable scans, we will thank God and then begin holding our breath as we wait for the next quarterly scan. If growth is found, we regroup with the team to discuss options. The chemotherapy drug she has been on since last July is our first course of action, but we know that it does not shrink or kill tumor cells. Other chemotherapy options exist but have scarier long term side effects or unknown side effects. Radiation has been discussed for much later in her future.

For awhile, Tillery will still have a port in her chest. Because a port must be surgically removed and replaced, we won't remove it until we are much farther out from treatment. As long as Tillery has the port, she's at a higher risk for a bloodstream infection. This means that anytime she has a low grade fever (anything above 100.5), we must go to the hospital and have blood taken and tested. As long as she has the port, minor illnesses will be treated as major.

Because Tillery has a shunt, which she requires to drain excess fluid off of her brain, anytime she has a hard hit to the head or has vomiting, we must take her in to the hospital for a CT scan. Shunt malfunction and infections are common and require almost immediate surgery and sometimes lengthy hospital stays.

Most people end chemotherapy and celebrate with a party. For most, ending treatment means "remission", "healing", or "survivorship". For Tillery, ending chemotherapy means a break from the hospital. It means no more weekly pokes. It means transitioning out of this first phase of being "in treatment" and moves her into "living with cancer".  "Remission" is not a possibility with our current medical options. We hope to change that with medical research and advancements.

So we aren't out of the woods yet. Tillery's story will be ongoing. But for now, for tomorrow, we are on a break from chemo and we are thankful.

Help us celebrate Tillery's first free Monday afternoon by making a donation to pediatric brain tumor research. Your donation can help us find a cure. Together, we can change the outcome. Donate here to the TIL Fund.

Donate $64 for the 64 doses of chemotherapy she has had.
Donate $26 for the 26 months she has been a cancer patient.
Donate $9 for the 9 kids who will be diagnosed with a brain tumor tomorrow.
All donations are appreciated and helpful. Together, we can make a difference!

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