My Son’s Lymphatic Malformation Journey

When my son Tripp was born, he had a swollen lip that we thought was just a temporary thing from delivery. The doctors didn’t really know what it was, but they weren’t really concerned, assuming it could have been from his positioning in utero or the way he was delivered. The speculations all matched up to me and as a mom to a daughter who was born with Cerebral Palsy, his swollen lip did not faze me in the least. So we cared for and brought Tripp home, thinking everything was fine.

But at his first pediatrician appointment, they took one look and referred us to Children’s Hospital for tests. 

Determining a diagnosis

At this point, I started to come undone.

I have two children who have been under anesthesia before they were six months of age. Haven’t I served my time? Haven’t my kids been through enough with Jaxlee’s CP? If you haven’t experienced a child with anesthesia, it’s not easy. I hate seeing them go under and the way they smell when they wake up. It just feels so counterintuitive to how you long to care for them as a baby.

But, we survived, and we got some answers. 

After an ultrasound and MRI, Tripp was diagnosed with a lymphatic malformation – essentially a grouping of fluid-filled cysts in his cheek and lip. Other than that, he is super healthy and thriving. 

So, we were faced with his treatment options: surgery, injections to the site, or an immunosuppressant drug called sirolimus. The doctors said that he wasn’t a candidate for the first two options, so the only available plan was to use a drug.

At first, I decided against the drug due to potential, and very severe side effects. As a mom who loves alternative medicine and holistic healthcare, pharmaceuticals are not usually the first thing we reach for to heal our health issues. 

But as time went on and Tripp’s face continued growing, hurtful comments started coming from others about his appearance. People would say things like, “Did he get hit in the face with a ball?” or “Dude’s got a big lip!” 

My heart broke for my sweet boy. I knew I had to find a solution for Tripp.

A solution for Tripp

Up until this time, I hadn’t shared publicly about Tripp’s diagnosis. Even some friends didn’t know. 

But I was at church one day, and a friend of mine came up to me and asked me about Tripp’s lip. I started sharing with her what it was, what the treatment options were, and how we were really not treating it because I didn’t feel that there was a right fit for him. 

This friend shared about her own daughter’s experience with a facial abnormality she had, and how a doctor at UCSF basically helped heal her. She recommended I go see him. I was ready for the next steps. I had been talking to doctors in Boston, LA, and Texas – but this was a direct connection and much closer than some of the other locations. 

The UCSF doctors also presented the same three options and really encouraged us to explore the sirolimus drug. We talked extensively through this and how closely he would be monitored for side effects. They gave us a 6-month trial timeline to be able to determine if the drug was working or not (there was no guarantee that the Sirolimus would help Tripp’s condition).

I agonized over the options, feeling the weight of the decision for my son. What if we got it wrong? What if it doesn’t work, or worse, what if it causes damage to his organs? In one particular hard moment, I had to get really honest and ask myself, do I trust the Lord with my child? Do I believe he loves Tripp more than I do? If the answer is yes, then I needed to trust him with starting the sirolimus. 

And so we did it. 

We began the medication at the end of July, and let me tell you, our prayers and deepest concerns have been answered.

Tripp’s transformational results

In just eight weeks, we’ve seen tremendous improvement in Tripp’s face – far faster than the six months we were told to expect changes. It’s amazing to see these results after praying for guidance and the right doctors. I’m so grateful we tried this drug and for God’s faithfulness through this journey.

There are still a lot of unknowns. I don’t know if Tripp will need to be on this medication long-term.

But for now, I’m thankful his blood levels have remained stable with no major side effects. I’m reveling in God’s faithfulness, and love the way Tripp’s appearance is taking shape.

This whole experience affirms how God has His hand on Tripp, protecting and healing him. I’m in awe of seeing the visible changes in my son’s face in real-time. 

While we don’t know exactly what’s next, I have hope and peace trusting God’s plan for Tripp. Tripp’s story reminds me that when we trust God, he not only provides healing but he provides peace. This is an outcome I didn’t think was possible, and now it’s our reality.

Grateful, grateful, grateful. 

xoxo,

Emily

P.S. I would love to invite you to join us in prayer over Tripp. Pray for his immune system as we go into the cold and flu season and continued prayers for all his levels to remain stable!