When Tillery was first diagnosed with a brain tumor, the hospital "accidentally" discharged us to go home and by them doing that, it gave us the opportunity to seek a better hospital to care for our child. We have often looked back at that "accident" and have seen it as God's hand guiding us from the very beginning. If you will sit tight with me for a bit, I'd love to share how God has been with us since the beginning of this new growth time.
On July 27th, an MRI, which was to be Tillery's last biannual scan, showed new tumor growth and Tillery's team recommended sending a sample of her tumor for Foundation One genome testing, which we did. It took 3 weeks to get back and they emailed us the report on a Friday with plans to discuss and call us on Monday with recommendations. Over that weekend, I poured over the report, researching big medical terms and trying to make sense of it on my own. One finding that stood out was a gene mutation called an ALK fusion. In my research, I learned that it's typically seen in lung cancer tumors and most research is with adults. I also discovered one researcher out there that is researching how ALK impacts kids with brain tumors and that researcher is Dr. Giles Robinson at St. Jude. His name was everywhere concerning research and data regarding this mutation in kids and a treatment called an ALK inhibitor, which focused on the mutation.
That Monday, August 17, when our team from Cincinnati Children's called to talk about a few treatment options, I asked if the ALK inhibitor trial at St. Jude was still open. They had not thought of trying that, although they knew the drug was on trial, so they reached out to St. Jude to see if Tillery qualified.
The next morning, I read a devotion about praying specific prayers and sent a text to a group of my closest prayer warrior friends that read: "I'm asking you to join me in this prayer that I am convicted of...Pray that Tillery will be accepted into the trial at St. Jude and be cared for by Dr. Giles Robinson."
A few hours later, I got a call to let us know that the trial at St. Jude was closed.
We continued down the path of discussing TPCV, a four drug cocktail that was up next for treating Tillery's tumor, but it just didn't feel right. Joe and I decided to reach out to Dana Farber (DF), the top pediatric cancer hospital for low grade glimoa brain tumors in the nation, located in Boston. Our thinking was that it would not hurt to go to the best in the nation for a second opinion. We told Cincinnati we were reaching out to Dana Farber and they recommended also sending Tillery's full case file to St. Jude as well, in case they had a different trial for her. The caveat was that her pathology could only be sent to one place at a time for review. The recommendation was to send to St. Jude since they had just recently seen Tillery's case.
Dana Farber, with limited information, came back after a week with a recommendation that an ALK inhibitor would be the best option but that they had no option like that for us. They also said that since growth was so slow, we could afford to wait awhile, to see if something else was out there or if the tumor might just not grow anymore. If we decided to start treatment, they agreed with the TPCV option, since there isn't an available targeted therapy.
After hearing from DF, all eyes were on St. Jude to see if they may have something for us. After waiting some more time, we learned some frustrating news...a mistake had happened and the pathology had never been sent from Cincinnati to St. Jude! We were waiting for an answer and they did not even have the material they needed to review Tillery's case. We were disappointed and angry and scared, not knowing what this lost time might mean for our child. There were many calls and emails that week and finally everything was straightened out and the pathology slides were received in Memphis. Through this, Cincinnati told St. Jude they could communicate directly with us, instead of having Cincinnati as a middle man to communicate the findings. Again, I started to pray that it would be Dr. Robinson who would see Tillery's case.
Last Wednesday, October 14, the brain tumor board at St. Jude reviewed Tillery's case and afterward, we got an email that they had something to discuss with us and they would call on Thursday. Thursday morning, Joe and I were in separate places when I got the call from Dr. Larkin, an associate who works with Dr. Robinson. As she explained the treatment option, a few things stood out that didn't sound good. She talked about timing being uncertain and there was a possibility of being on the treatment forever. She also said we would need to relocate to Memphis. Paired with the idea of unknown long term side effects, those things didn't sit well with us. We quickly emailed back to St. Jude Thursday afternoon and said we would not be going there for a consultation. We informed them we would instead opt to begin TPCV. We emailed our teams in Cincinnati and here in Knoxville with our decision, and the Knoxville team sprang into action. They quickly scheduled us appointments for the morning of Tuesday, Oct 20, and ordered the oral chemo to be sent to our house for arrival Wednesday.
We decided to make peace with TPCV.
Last night, October 19, Dr. Larkin from St. Jude called to follow up. I told her we didn't think it sounded like their option was the right one for our family at this time and that we would proceed with TPCV. Maybe if TPCV didn't work, we could reach back out to them. But for now...thanks, but no thanks. Dr. Larkin asked if Joe and I were available to talk with Dr. Robinson for a few minutes because he really wanted to talk with us about his research. We decided to give him a minute and put the phone on speaker between us.
There was the familiar, and then, there was the unimaginable.
Dr. Robinson said a few of the scary things we have heard often...Tillery's pathology looks like no other tumor they have ever seen and it's also rather large. He said by looking at her pathology he would think it would be much more aggressive and faster growing so it was interesting that it had actually stopped growing for such a long time and that the current rate of growth is so slow. He explained that her tumor has a mutation that is 2 genes fused together and one (the ALK) is what activates the tumor growth. On a pathology slide, Tillery's tumor is filled with ALK mutations. Dr. Robinson told us about his research with an ALK inhibitor with high grade gliomas. He said he sees them drastically shrink the tumors, sometimes even to the point that they can be surgically removed. He said he's never tried this treatment in a kid with a low grade glioma because of unknown factors, but he said with Tillery's extremely rare pathology, he thinks she would be a good case to study. He would like us to come to Memphis for the first month so that he can closely monitor her. To see how she responds and how her tumor reacts. He than said that what he learns could then be applied to other low grade glioma kids! This treatment is an oral pill that she would take daily, so no yucky taste and no pokes or port. The only side effect he has seen with kids with brain tumors is some weight gain, which they would monitor. We would do scans every 2 months to see if it's working. If there's no change in 4-6 months, we would come off of it. If there is change, he thinks it could be significant, though he couldn't tell us exactly how long she would need to take it...6 months to possibly up to 2 years. His goal is that this could shrink her tumor to a small enough size that we could talk with her surgeon about removing the mass. Dr. Robinson is the first person to ever say to us that there is a possibility that our daughter might not always be a cancer patient!
I started praying over Dr. Robinson's research on September 2nd and on October 19th, he called and asked us to let him try a treatment on Tillery that could potentially not only save her, but could also save so many kids after her! It felt like an eternity to get here and there were many bumps along the way. And finally, last night, we saw God open a door for us and we have decided to walk through it.
This upcoming Monday, Oct 26, Tillery and I will move into housing on the St. Jude campus where we will stay for a month. Next week will be filled with meetings and appointments and will probably feel pretty overwhelming but on Thursday, we will meet Dr. Robinson and begin a journey with him that we are anxious, excited, and hopeful for.
Thank you for your continued prayers. Keep them coming. Big things are happening over here!
