God Has Opened a Door

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!

Back in Cincinnati - MRI time again

It's been awhile since a trip to Cincinnati felt so heavy. 

Last week, we posted our crazy previous 2 weeks and our plan moving forward. Then, over this past week, we continued to search for peace in that decision. Ultimately, we decided we needed to have more review of Tillery's chart. We are having her records sent for review by St. Jude and Dana Farber. Today's MRI will tell us if there has been growth over the past 7 weeks and how much growth. This will let us know if we can wait for those reviews before we start treatment or if we need to start chemo this week. We should receive the radiology report tomorrow. 

Last night, Tillery and I laid down in bed and she said "Mom, sometimes I say a prayer by myself in my bed." She wanted to say a prayer for us and asked "Do you have any prayer requests, Mom?"

Mom: Let's pray for your MRI tomorrow. 

Tillery: Yeah, but why do I have to have an MRI?

Mom: Remember how we saw that your brain tumor has grown a little bit? We are having a new MRI to measure again so we can pick the best medicine for you. 

Tillery: Will it be yucky medicine?

Mom: I don't really know. It might be a pill that you swallow or medicine that you drink. Or it might be a medicine we have to go to the hospital to take. 

Tillery: I hope it's not yucky. I love you, Mom. 

Mom (through tears): Mommy and Daddy love you so much Tillery and we will do all that we can to always do the very best for you. 

Tillery: I know but why do you say it sad. 

Mom: I'm sad that you have to take any medicine at all. I just want you to always be good. 

Tillery: It's okay, Mom. If you feel sad or scared you can always come to me and I will give you a hug. 

Mom: And if you feel sad or scared you can come to me and I'll give you a hug. 

Tillery: Deal!

This kid is amazing!

 

Treatment Options, Plans, and Prayer Request

It's been a few years since we've needed to write anything on Tillery's blog about her own medical care. Not gonna lie...I'd be okay to never have to do it again. But here we are...

Here's a timeline of the past 6 weeks: 

(This is gonna be long so if you'd like, skip to the end for the plan.)

Monday, July 27 - Tillery had an MRI at Cincinnati Children's that showed new growth. For Tillery growth happened in 2 ways. She has actual growth of the tumor size around the perimeter but also, in 2017 her tumor was hollowed out in the OR and that space has also filled in. This means that Tillery no longer has safe space for growth and additional growth would put pressure on areas in her brain that would cause damage that could potentially be irreversible. 

Wednesday, July 29 - The brain tumor board at Cincinnati Children's Hospital met and Tillery's case was presented. Her neurosurgeon and neuro-oncologist, along with their peers, determined the best next step would be to send a sample of Tillery's tumor that was removed in 2017 to have Foundation One genome testing to determine if there are any mutations that could be specifically targeted with treatment. 

Friday, August 21 - The Foundation One testing came back with results. The team was specifically interested to see if there was a BRAF mutation, which would open Tillery up to a new, targeted chemo option that is well tolerated and has good success rates. Tillery did not have that mutation. Instead, Tillery's tumor has a less common mutation called an ALK fusion. We have since learned that they cannot determine at this time how rare this is because they have not included it as a part of the testing for long enough to have a large sample. 

Over that weekend, I reached out in some brain tumor parent groups to learn more about the mutation. I was able to connect with 2 other moms and we messaged throughout the weekend sharing research on the mutation and common chemo options. Both of their children are on treatment for the first time and are on standard protocol treatment like Tillery did the first time. They knew of one other child with the mutation who has passed away and shared her page so I could read through posts about her treatment journey. The cancer parent community is the greatest resource to give real faces and stories to the hypotheticals we hear from the medical team. 

Monday, August 24 - We had a call with Dr. Pillay-Smiley, our new oncologist at Cincinnati Children's. She had shared the report with Dr. Fouladi, our original oncologist who is now at Nationwide Children's and also Dr. Spiller here at East Tennessee Children's. The 3 of them were discussing options and she could not yet give a recommendation but talked through a variety of things they were discussing that included the same treatment we have done in the past, other standard of care drugs, inhibitors for the mutation, and trial medications. We took notes, asked questions, and ended the call with a plan for the oncology team to continue revisiting Tillery's medical history and all options and to come back with a recommendation soon. 

Here I must say is when things became real and really hard for me. We still had no news to share with people: no direction, no plan, no answers. But what we had was a whole lot of possibilities and the fact that we were at a place of such confusion that there wasn't a direct treatment plan was unsettling. Sadly, this is often the reality for kids with cancer. There isn't enough strong research to point down a definite path so it becomes a bit of a guessing game. How often do you go to a doctor when you don't feel well and they say "well there are a lot of medications we can try and none of them is especially great and we don't have enough information to even make a good recommendation, give us some time to read all the research and your detailed symptoms and see if there is something that might be a fit"? It's uncomfortable to have no clear plan. 

We waited an entire week and the following Monday, left messages and emails and still never heard anything. 

Tuesday, September 1 - How appropriate that on the first day of Childhood Cancer Awareness Month, we spent the afternoon on the phone discussing treatment plans? Elizabeth, our nurse practitioner who is the only member of our original oncology team that remains in Cincinnati, called to discuss the options. At this point, they had been narrowed to 2. One drug is newer and targets the ALK fusion, the other is older with harder side effects but known results. After a long discussion and Q&A, we decided that next steps were to try for the targeted inhibitor and see if Tillery could be accepted into a drug trial at St. Jude. 

I should also mention here that while we ended the call with a plan, the plan was shaky at best and relied on a lot of things to fall into place. We spent the evening discussing backup plans based on our call with Elizabeth and this included the possibility of moving our care to Nationwide Children's to follow Dr. Fouladi and searching for other hospitals that might be trying this same inhibitor drug. See, the problem with the targeted therapy is that it's been used in adults and is just now being tried in kids which means they don't know the dosage so it's a guess. You could under medicate and end up not seeing results or over medicate and cause more harm than good. None of the medical team members have ever used this drug and none is overly comfortable. 

Wednesday, September 2 - Elizabeth called that afternoon to let us know that Tillery had not been accepted into the trial at St. Jude. Trials look for specific types of patients and Tillery's case does not qualify her. The team was now recommending the other drug that isn't targeted to her mutation but instead has a long track record in the low grade glioma world. We discussed specifics of that medication, which included that Tillery would need to be more isolated from germs as her ability to fight sickness will be affected. We ended that call with a plan for Cincinnati to reach out to our hospital in Knoxville to see if they are comfortable to manage the treatment so that we can stay close to home. 

This evening was especially hard. The conversations we had about side effects were hard to process. This chemo includes a 5% chance of causing leukemia, which is a low percentage until it's your child who already has cancer and you are thinking of another cancer being added into the mix. We were also processing what it would look like to have lowered immunity in the days of COVID19. Even with a vaccine to help others gain herd immunity, it's doubtful that Tillery will be able to receive the vaccine while on chemotherapy. Our light at the end of the quarantine tunnel was going dim.  We were also thinking about the physical impact on Tillery to have to deal with vomiting, fatigue, lowered immunity, and blood transfusions. We were thinking about the mental impact on Tillery to again have to be held down for port access. How will our joy-filled Tillery handle feeling crummy for the next year? Please don't let it steal her joy!

Thursday, September 3 - We took a day off of medical decisions and discussions with the team. They worked behind the scenes and we worked on processing and finding peace. 

Friday, September 4 - We spoke with Dr. Spiller, our local oncologist. We decided to throw some loaded questions at her since quite frankly, she's not calling the shots so we felt she would shoot us straight without an agenda. She said she hasn't had a ton of kids on this treatment but the ones she has had have tolerated it well. She's not had as much experience with them being hospitalized or isolated as what Cincinnati described to us. She is completely comfortable with this for Tillery's next step. We ended that call by deciding to stay the course. The treatment plan has been sent to insurance for approval and we have scheduled for Tillery to have a baseline MRI on 9/14 in Cincinnati. Once both of those are done, Tillery can begin treatment. 

THE PLAN

This is a 4 drug chemo plan. 3 are oral medications that in most cases can be given at home. The 4th is an IV chemo that she has actually received before. The plan is 8 cycles and each cycle is 42 days. The first 4 days are specifically timed oral chemo doses and then on days 14 and 28 she will go to clinic for her IV chemo. We will have her port place on the first cycle's day 14 and then receive chemo that day. 

If you've made it this far, pat yourself on the back. It's been a long and emotional 6 weeks, specifically the past 2 weeks. 

Our current prayer requests are: 

• That we will be at peace as we begin this round of chemotherapy. 
• That God will give us the words to speak when we tell the children the next steps. We have waited until we have a plan so now we will be working on how and what to say to them.
• That God will put a hedge of protection around our girl. We pray that she would have minimal side effects from this treatment now and in the future and that she will not be exposed to anything else that would make this a harder road that it already will be. 
• That God uses this new phase of our journey to continue to minister to others. We already have ideas of ways that He can use this and we cannot wait to see what He has planned!!