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!!
