End of Year Updates and Beginning of Year Plans

557 days

That's how long it has been since the last time we saw tumor growth. On June 16, 2015, after 2 monthly doses of Carboplatin, the chemo we planned to use to stabilize Tillery's tumor, an MRI showed growth instead of stability. It hit us hard and unexpectedly. We had been going through 8 months of hiccups and hurdles and we were just exhausted. We wanted SOMETHING to go right and yet, there we were, another hiccup, another hurdle.

Since then, we found a new chemotherapy that did it's job. Tillery did 52 weekly doses of Vinblastine (with more hiccups and hurdles mixed in but at least the chemo was working). We ended chemo on December 5th, just a few weeks ago. It was an anticlimactic end to chemo, as we didn't realize it was the last dose of chemo until after the appointment so the day went by the same as any other chemo day.

I was a little bummed that we didn't do the end of chemo party. There wasn't a cake and there was no picture of Tillery holding a sign that said "Last Dose of Chemo". I wanted to have that celebration that so many of our other oncology friends have had. But really, when we thought about it, it wasn't our time for a party. We knew another surgery was looming. We knew that a mass still resided in her head. We knew that it was possible that we would need to resume chemo in the future. We weren't yet at a time for celebration.

So the plan was to travel to Cincinnati on January 26th for another MRI and to meet with neurosurgery to plan for and schedule surgery. If you've followed Tillery's story for long, you know, we NEVER follow the plan.

Friday, December 23, Tillery had a fall in our kitchen and hit her head. She couldn't calm down so we went to the ER to have her examined. The concern when she falls and hits her head is always her shunt, so that's what we were looking for on an x-ray. All looked good and we were sent home. We were told if she had any signs of shunt malfunction in the next few days to return for a CT scan.

Sunday, December 25, Christmas morning, Tillery woke up vomiting. She wasn't acting like she had a stomach bug. It was a strange, unexplained vomiting. It reminded us of the time she had shunt troubles so we decided to take her to the ER again for a CT scan. Again, they were focused on her shunt and it looked fine on the scan so we were sent home for presents, food, and family.

Monday, December 26, the follow up nurse from the ER called. She said that a full radiology report had been written about Tillery's CT scan and while the shunt and bone flap both looked fine, the scan showed slight tumor growth in the solid portion of her tumor. She started reading off measurements but I couldn't focus on her words anymore. My brain had moved on to next steps. We needed to get that scan to Tillery's neurosurgery team in Cincinnati. They needed to compare it to their latest scan and determine if there really is growth. I decided right then to assume that our local hospital must have something wrong and they just needed to step aside and send that scan on to the experts. We haven't had any bad experiences at East Tennessee Children's but in that moment, I needed this to be wrong!

A few issues:

• It was the day after Christmas, which was being taken as a holiday day at all of our clinic offices. Getting an on call team involved seemed unnecessary so we would have to wait until regular office hours.

• It was the week after Christmas, when many people were out of the office or taking it easy. It was going to be difficult to get communication flowing with missing team members and even harder to get a plan.

• HIPPA rules that are supposed to protect patients also make things harder. Getting a CT scan from one hospital to another is not as easy as today's technology would lead you to assume. It took 2 days to get the scans from one team to another.

So, it was Thursday before I received a phone call back from Cincinnati Children's neurosurgery. (I should note that I spoke with them multiple times each day in between but it was that long before we got a phone call with news.) Our surgeon received the CT from Tennessee and compared it to the scan from November. There was indeed growth.

Thursday night, we sent an email to our full team: CCHMC Neurosurgery,  CCHMC Oncology, and ETCH Oncology. The email detailed our concerns and our desire to move up the MRI date.

Yesterday, we got our plan for next week. We will travel to Cincinnati on Monday evening for an MRI on Tuesday. Wednesday, we will have a free day and try to do some fun, family things in Cincinnati, turning another Cincinnati trip into a "vacation". While we are off enjoying family time, our neuro and oncology teams will be meeting to discuss options for us. Thursday, we will meet with our teams to determine our plan of attack.

This is hard news but we've been here before. In fact, during the past 2+ years, we've spent more time revising plans that actually staying on plan. Our story is one of emergencies, unexpected outcomes, and road blocks. That said, each time, we've gotten through. During the time that we have dealt with so many hard times, we've also experienced some amazing things.

In the last year:

• Tillery learned to walk.
• Tillery started eating and drinking by mouth.
• Tillery started a school program that she loves.
• Tillery has only had one hospital stay and it was planned.
• Our family took our first family vacation that did not revolve around a hospital trip.
• We raised over $11,000 for pediatric brain tumor research and held 2 more blood drives.
• And, even if it's short lived, Tillery ended chemotherapy.

We look forward to seeing what 2017 brings. We focus on the hope we have for Tillery's future. We continue to feel God's presence and see Him working in our lives. We know that Tillery is a special child who is touching lives and we are blessed to be the family who gets to love her. Thank you for loving her with us.

Fruitcake Day

Hello, me again.

12 days ago, I wrote a post about how we were done with chemotherapy and we had no more appointments for 6 weeks. I knew when I wrote it, it was all a bunch of baloney! Tillery hasn't followed medical plans ever, so why start now?

So here we are, two days before Christmas, writing a post about an ambulance ride...

This morning was great. We slept later than normal (this is our first full day out of school for Christmas break) and eased our way into the day. Luke ran out to get the paper this morning and discovered that we had missed getting our mail yesterday and in it was a package from a friend. Inside was a small fruitcake with her recipe. We all sampled it and decided we should give fruitcake a chance and that was our goal for the day...tackle fruitcake baking!

A little before noon, I was heating frozen pizzas while making my grocery list, the kids were at the kitchen table playing with dominos, and Joe was in the shower. As I was taking a pizza out of the oven, I heard Tillery's head hit the linoleum floor behind me and immediately knew what happened. She had been sitting in a chair that isn't her normal chair with a booster in it. She was probably reaching across for something on the table and lost her balance and fell. As soon as I heard it, she started shrieking.

I took her into the living room and sat in the chair with her to start doing my own neuro checks I have become accustomed to doing: check all incision areas, feel around the shunt, feel around the bone flap, look at her pupils, look for redness or swelling anywhere, see if she can calm down. Joe heard the screaming and crying and came running out from the bathroom to check on things. I told him I thought we would be ok, we just needed to wait for her to calm down. He went back to the shower and I tried talking to her about other things, trying to make her laugh, trying to distract her. She kept crying. Her eyes were droopy and she kept trying to close them. I knew she hit hard and I didn't want her to fall asleep so I was trying to soothe her without letting her drift off. But she kept crying and closing her eyes. It was like her eyelids were too heavy for her.

I remembered it was during normal business hours so I called the oncology clinic to ask if I should bring her in to get looked at. The lady who answered the phone put me on hold to get a nurse for me. Then, Joe came out of the shower and saw that she was still just as upset as when he saw her a few minutes earlier. I told him I was on hold with the clinic and he said, "Hang up and just call 911.".

Remember, we've done this. She's had falls and we've been in the trauma bay about to lose her. She's gotten bleeds in her brain. She's had her shunt malfunction. She's ridden in ambulances and had to be airlifted. We don't take chances.

So I hung up and called 911. I told them that she had a fall and said, "She has a brain tumor, hydrocephalus, a VP shunt, and a recently placed synthetic bone flap." They said, "An ambulance is on its way to take you to Children's."

While I was on the phone with 911, Joe was trying to get Tillery to follow his finger with her eyes. She couldn't/wouldn't. She was saying the front of her head was hurting right between her eyes. With a shunt, you always fear the pressure that can build in their brain if it stops functioning.

I called a friend and tried to play it cool, "Hey, are you really busy or do you think maybe Luke could come by for a visit....An ambulance is coming for Tillery and we were wondering if Luke could hang with you." (Thank God for the Williamses and the Vaughns who have had to answer this call for us too many times!)

We went to East Tennessee Children's and things were pretty routine. Tillery had calmed a lot by the time we got in the ambulance and the ride distracted her from her head pain. She played her favorite car games (I spy something green...which is never anything green, and I see a flag!). In the ER, they did neurological checks on her and she checked out fine. We decided that rather than do a CT scan and expose her to more radiation, we would do a series of x-rays to look at her head and shunt and make sure there was nothing obviously wrong. The shunt series looked fine so we were released to come home. We will continue to watch her for signs of shunt troubles over the next few days but for now, she seems fine.

 

Tonight, we got back on track with our plans. Luke and Joe had a game night while Tillery and I got to work in the kitchen. We made the fruitcakes we planned to make earlier today. Some days don't go as planned and sometimes some really yucky stuff happens. If you don't let it knock you down, at the end of the day, you can still have your fruitcake.

Merry Christmas, everyone! Here's hoping for no more updates from us until the new year!

Tomorrow

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!