FIGHT THE GOOD FIGHT

The last time I wrote for the “Fight the Good Fight” blog was right before my daughter Sofia was born in July of 2022. It seems only fitting that I should return to write again at the likely end of Sofia’s life. For those of you who do not know, our youngest daughter Sofia has been diagnosed with a Diffused Intrinsic Pontine Glioma (DIPG). The tumor is not operable as it is diffused, or “mixed in,” with the essential part of her brain called the Pons, right along her brainstem. There are virtually no long term survivors of those diagnosed with DIPG. There are no known chemotherapy treatments that are effective in totally killing this tumor, it always seems to grow back. Therefore, our only option right now is radiation, which we hope will shrink the size of the tumor and buy us about 6-12 months. As you can imagine, this news is devastating to us. However, God’s grace has been sustaining us every step of the way. My hope is that this series of blogs would show everyone how faithful God is in the midst of a trial, that God is always good, He always does what is right, and always receives the glory He is due. 

However, God’s grace has been sustaining us every step of the way. My hope is that this series of blogs would show everyone how faithful God is in the midst of a trial, that God is always good, He always does what is right, and always receives the glory He is due. 

On Wednesday January 8^th 2025 I took Sofia to get a MRI of her brain at York Hospital (PA) because she had an unsteady gait and stopped walking. It was just shortly after we arrived home from the MRI appointment that we got the call from the Neurologist informing us Sofia had a pontine glioma and she needed to be admitted to the hospital immediately. My heart sank to the pit of my stomach. Justin and I began to cry, and because I could hardly catch my breath, I asked him to pray. As he prayed over us it was a quick reminder to us that God was our refuge and He still is with us. The Lord is not surprised at all by this and we can trust Him. Once I gathered myself I packed up my things and I took Sofia to the hospital. There will be more to come on all the providential things God did during this time, but for now, I want to focus on God the author of life. 

Sofia was admitted to the hospital later that day. However, it was not until Thursday January 9^th around noon time that we were told that her prognosis was virtually zero. Prior to this, we knew it was bad but we were hopeful it wasn’t that bad. The Neuro-Oncologist began explaining to us the rarity of DIPG. There are only 150-300 cases a year in America. The United States has a population of about 330 million people, putting the chances of getting diagnosed with this type of tumor is conservatively about 0.00009%. There are more doctors researching DIPG than there are patients who have it. That is partly why there are so few options. After receiving the initial information from her doctor, I proceeded to ask how something like this happens. Of course we know the theological answer is sin. I wanted to know if there was some sort of explanation as to how this happens mechanistically in the body. The doctor proceeded to explain that when she was conceived in my womb and her cells began dividing there was one single genetic typo in a DNA strand. When this happens it causes those cells to remain immature cells (they are supposed to mature and be sent out to fulfill their function). These immature cells congregated in her brain and at a certain point began growing uncontrollably within her pons until she manifested the physical symptoms from the pressure of the tumor. Now I’m sure I did not explain that totally correct, but that is the gist of it. When the Lord was forming Sofia, knitting intricately weaving her together in my womb; He ordained this typo in her DNA. A God ordained typo. Now please don’t miss this friends. God is knitting together every sweet child in every mother’s womb every single day and keeping everything running and forming as it ought. How gracious is our God to do this for us?! 

When the Lord was forming Sofia, knitting intricately weaving her together in my womb; He ordained this typo in her DNA. A God ordained typo.

As I continued to meditate on Psalm 139 I was so comforted by the fact that God in no way was surprised by this, in fact, He ordained it. As shocked as we were, He was not shocked. Before there was ever a single day of Sofia’s’ life he already had every one of her days numbered. As one of our elders reminded us, “before she was ever a Feltkamp, she was God’s.” My husband kept repeating, “Rach, she was never really ours.” God was reminding us through His word and others that as much as we love Sofia, He loves her more. Now someone will hear this and say, “But Rachel how could He love her if He is potentially allowing her to die?” To which I would respond, it is far better to be away from the body and present with the Lord. God knows what is best for Sofia, not us, and we trust Him. 

It is far better to be away from the body and present with the Lord. God knows what is best for Sofia, not us, and we trust Him. 

The Lord has graciously given us 2.5 years with Sofia and we hope through radiation treatments and a potential clinical trial he might give us a short while longer, but ultimately she is the Lord’s and He can take her whenever He chooses. We know that God can do a miracle. It would be no problem for Him. It would not be hard for Him at all to heal her, whether that is through supernatural means or medical intervention. He can do it. However, we also understand the likelihood of death with DIPG. These facts do not mean that we don’t trust God to heal, but it does mean that we want God’s will to be done first and foremost. We are pleading with the Lord to supernaturally heal our daughter, but at the same time our hands are open to what God wants to do. We know that the Lord works all things together for His glory and our good. Romans 8:29 tells us what that good is, “to be conformed to the image of His Son.” The Lord is going to do what brings Him the most glory and sanctifies us the most. My husband and I desire those two things above all else. We have already seen Him providentially providing and caring for us in tangible ways every single day. I have much more to say on this. For now, brothers and sisters, let’s rest in this truth: God ordained this, and we can trust that He will do what maximizes His glory and our good.