First of all, happy Mother’s Day to all of you mothers out there! I know that Tom and I are so grateful for our mothers, both of whom have shown us how to love unconditionally. We would not be the people that we are now without them. For myself, I hope to be at least half as a good of a mother to my kids as my mom was (and is) to me.
We are continuing our break from her entire protocol (Ommaya taps, oral chemo, and all other treatment drugs). We saw ophthalmology recently, and their conclusion was that there was not any inflammation of the optic nerve or any indication of hydrocephalus that could be causing her nystagmus (eyes bouncing side to side). She has excellent vision when she is able to “correct” her gaze at her null point (the point at which the eyes are steady and not bouncing). The thought from the ophthalmologist was that the eyes issue was exacerbated by any stress (like having a needle put into your head and having chemo injected directly in the CSF, and also her recent rhino virus) and that it was something that was not concerning from the point of ophthalmology and we can correct the eye issue when we have dealt appropriately with the cancer. The really encouraging thing is that over the past week, her eyes have returned almost to normal! She isn’t “side-eyeing” as much and she is able to read a book to us without looking out of the corners of her eyes! In fact, just about every aspect of herself (except for her appetite) is returning to her normal Charlotte self and it is so reassuring to see her be so herself.
Other really positive news is that her counts are really improving! Today was her third dose of the weekly platelet stimulating medication (NPLATE), and her platelets were 67! This is still pretty low compared to what you and I are walking around with (the low end of normal is 150), but it’s a vast improvement from numbers in the teens that she had been living with just a few weeks ago. Her white counts are going up along side her platelets, and that’s not because of any medication, it’s just her bone marrow (finally) kicking in. Hopefully this break from chemo and getting over the rhinovirus is what her body needed, and now we can look forward to continuing to make sure this cancer is fully beat down.
Speaking of next steps for treatment…. While we have been on this break, the doctors sent out a genetic test to see how her body processes different medications. If her body is really efficient at breaking down the medication, then she would need more. Subsequently, if it was really inefficient at breaking down the medication, then the medicine would stay in her blood circulation for longer and give more side effects (like lower blood counts). Her results came back with some indications that she may be slightly-moderately inefficient at processing one of her chemos. The pharmacists are still looking at these results and the team is discussing where to go from here. The way these chemos are processed involves quite a lot of metabolic pathways and she was only moderately inefficient in one of them, so it’s not entirely clear what that means for her overall processing. Unfortunately, the research for pediatrics is much less solid than the adult world, so there is not as clear of guidelines. We will pray for discernment.
The really big prayer request we have right now is for the upcoming MRI on May 28. This MRI (3 months post radiation) should be one of the most significant ones in regards to the total effect of radiation. There could be up to 3 more months possible effect after this point, but this next MRI (the one in 2 weeks) should give us the best indication of the total effect from radiation. Additionally, we have given her more chemo as we were really trying to “kick it while it’s down”. Ideally we will see that there is no cancer at all, and no radiation necrosis (which would be toxicity from the radiation). It is known that her subtype of medulloblatoma (SHH - sonic hedgehog) is prone to scaring especially along the spine. So I’m bracing myself for that possibility. This means that she could have spots of scar tissue where cancer used to be along her spine that just stay there for years without growing or shrinking. I’m praying we just gave a clear scan.
As if this MRI wasn’t high enough stakes, it was the 3 months post treatment MRI (September 2023) that we first noticed changes that turned out to be relapse. So there is another emotional layer for Tom and I as we prepare for this next MRI. We know that this cancer is extremely aggressive and we feel that it can’t be underestimated. With her bone marrow being this vulnerable, a break was necessary, but it is still stressful to think that we have been laying off the gas pedal so to speak and possibly giving this cancer time to rally.
With how well she is doing, there is so much happiness and comparative normalcy in our lives I wish I could only feel joy and peace. Unfortunately, I thought we were “in the clear” back in September and October because she was doing so well. Now (especially as we take a break from chemo and inch closer and closer to the next scan), moments of complete anxiety bubble out and it feels like there will be no end to the second guessing and uncertainty and fear. One recent moment I had was during a storm we had here in the Carolinas last week. I sat at the kitchen table with Tom and just cried and cried. The moment he started comforting me and speaking a message of hope and faith and trust in God and His Plan, the storm that had been raging all day slowed to a barely-there drizzle and the sun shone for the first time that day. Knowing that this was God tapping me on the shoulder, I went out to look at our front door and saw a full double rainbow. Y’all. In the natural world, I don’t think there is a more glorious and perfect reminder of hope and God’s mercy than a rainbow. Well there’s not- God himself designed to it be thus. That we would remember His covenant with us whenever it was put in the sky. God is so good y’all. For giving Tom and I these two beautiful kids, for giving me such a loving, faith-filled husband, for all of the love we get to share.
In the next few weeks we will again have decisions to make. My prayer is that the Lord will guide each of those decisions made by us and our care team. That He will put the right people that we need to talk to in our path to guide us, and that we have the faith to trust in His plan and know that whatever it is, it is Perfect.
Prayer Requests:
- In thanksgiving for Gods mercy, compassion, and faithfulness.
- In thanksgiving for my husband, who is the rock of our family, and the one who will not ever allow me to fall to despair.
- For the MRI on May 28. That it shows the cancer is gone and that her brain is healthy.
- For guidance on the treatment plan after the MRI. That we choose the right path and that God places the right people in our path at the right time.
- That her counts continue to improve and are not excessively affected by continued treatment.
- For an improvement in her appetite and desire to eat.
- For Charlotte to be completely cancer free, and live to Glorify the Lord the rest of her life.
Thank you for all of your prayers!
Jesus, I trust in You!
