Molly Margaret's Miracle

Hey friends, thanks for all of your prayers last week. It was a very intense week and we’re so thankful for you holding us up. 💛

Molly Margaret’s scans came back and the tumor remains. It really hasn’t changed since our scans in December. Obviously not the news we wanted. What a freaking bummer. Our doctors are not discouraged, thankfully, but obviously the big question is what’s next? The doctors believe that what is remaining is probably mature cells that are not concerning. They feel that the shrinkage we saw after two rounds of chemo was the immature cells, which are the issue causing cells because they replicate so quickly. However we cannot know for sure that this is true short of seeing the cells under a microscope. They’re proposing another surgery – go in, remove as much as possible (without compromising her kidney), send that off to pathology and see what we’re dealing with. If we’re dealing with what the doctors think we are then we will be able to leave what remains and monitor closely. We have met with our surgeon who performed the first surgery to discuss his thoughts and plan. We are also in the process of getting a few other opinions and should hear back on those early next week so that we can make a decision on how exactly we will proceed. There are lots of details being discussed so please pray over these conversations, the information we’re absorbing and the doctors who are formulating a plan. We will update when we know what the next steps look like.

Last week we also had an OMS treatment – IVIG and steroids. It went as well as it could – steroids are always extremely challenging. It’s hard to watch a medicine you know is helping to heal your child alter how they feel and very visibly make them uncomfortable and upset. We seem to be getting to the other side of those effects, thankfully. We were monitoring MM’s counts all week – her platelets recovered nicely on their own, praise the Lord, but we ended up needing a red blood cell transfusion on Friday to help her hemoglobin count. It made for a very long day but Molly Margaret definitely seemed to feel better after getting it so we are thankful for that. It’s always hard to gauge how she’s feeling since she isn’t able to communicate it to us but we definitely saw her get some energy from the transfusion!

What a week. We’re wrestling with the news not being what we wanted. Feeling like the goal posts are always moving. We don’t want to watch Molly Margaret endure another major surgery. We don’t want to wait for more pathology. It’s not what we prayed for and it’s not what we wanted the answer to be. But, we’re picking ourselves back up and preparing to keep fighting. We’re so thankful for our team  at Duke and the way they care for us. We’re tired, we’re weary, but we’re still standing.

People often ask what we need and most of the time we don’t even know, to be honest. But right now we do know. We need people to say “This sucks. This isn’t what we wanted and it’s really hard. But we’re going to stay in the fight with you. We will keep praying and crying out to God on your behalf.” We don’t need silver linings or a pep rally. We don’t need the positives pointed out. Trust us, we see them. We’re calling out every good thing and thanking God for them. The fact that this could be much worse is always at the forefront of our minds. But this is hard. Being in the trenches is exhausting and painful. We need you to hold us up. We know that you don’t have to follow our journey but that you’re choosing to and we will never get over what a gift that is. Thank you. For walking with us in the trenches. For standing in the gap for us. We know we have an army fighting with us and we will never take it for granted. 🤍

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” 2 Corinthians 4:8-9

• Neal, Mackenzie & Molly Margaret 💫