01/12/2025
Today, please join us in continuing to pray for Tillery is Loved. A sweet child we met years ago on a Disney trip. We will pray for the best decisions! 😍
Our biggest fear is losing our child. A close second is having our child forever changed because of treatment. This is what weighs heavy on brain tumor families as treatment options have extremely high risks of forever changing your child.
Tillery had appointments at St Jude this week and we knew that her neuro oncologist wanted to take a chemo break again. The last time we took a chemo break, the tumor had rapid growth and we went from calling it a low grade tumor to saying it’s now looking high grade. We wanted to discuss tapering the dosage or taking a very short break so that we didn’t give the tumor as much chance for growth. Ultimately, her doctor said no to both of those with good medical reasons. Dropping to a lower dose could allow the tumor to become resistant to the drug quicker. Coming for a scan sooner than 2 months, may not be enough time to really measure rate of growth. So then we discussed what happens after the 2 month break. Last time, the growth was so fast that we had to go right back on treatment to start shrinking the tumor again. This time, Dr. Robinson had another idea. He wants to consult a neuro surgeon about removing the spots of new growth to see if they could take out the active tumor. He again confirmed, a surgeon will not be able to remove all of her tumor, now or ever. He has “a hunch” that removing the areas of new growth could stop the tumor growth. But is an oncologist’s hunch enough for us to make the decision to risk brain surgery for our child? The areas of growth are in areas that could forever change Tillery with just a slight surgical error. It’s a big risk for something that has no research to back it up. But the alternative of going back on her current treatment? Well, there is a chance that over time Tillery’s tumor will become resistant to it and at that time, we are in a place with very limited options. If we lose this drug, there is the traditional chemo option that we did not want to take 4 years ago. The concern is that with her having taken her current treatment for so long, the traditional chemo option may not work for her. That leaves the only other option: full brain radiation. She is not a candidate for targeted radiation because of how large her mass is. So her only radiation option is full brain radiation that would kill both tumor cells and healthy cells. That would definitely change Tillery forever.
So here is where we landed…we bought time! We asked for time to come together as a family and discuss the options and timing. We know that if we are open to surgery, it would happen 2 months after her stopping treatment and we weren’t comfortable at this time talking about brain surgery in March. They have tentatively scheduled us to come back 4/30 for appointments but we will discuss and get back to them if we need to shift timing. There is obviously a lot to consider and we need to be able to prepare ourselves for what is to come.
It’s easy for those on the outside to have looked at Tillery over the past 10 years and marvel at how amazing she’s doing. It’s easy to forget that she still has a large mass and limited treatment options. Honestly, there are no safe treatment options as we had conversations about the irreversible damage to her heart that is being done by her current medication. While you have looked on and seen a child thriving, we have been having these scary conversations behind the scenes for years. We know that forever with our child is not promised, especially forever with her in her current mental and physical state.
For now, we ask for prayers for Joe and I as we make decisions that are based on “hunches” and not medical research. Whatever we decide to do next will have impacts on Tillery for the rest of her life. Pray over the right decision and the right timing. And pray that when we do take this 2 month break, God works a miracle no one saw coming and that Tillery’s tumor would remain stable so that we don’t have to make any of the next decisions. God has always been faithful and we know He always will be. We put our trust in Him as we take the next steps.
