I realized this week we have not given you all any sort of update, sorry!! This is a case where no news, is great news!! 

We we have been home three weeks and have visited the doctors office(s) five times... 

First we had our routine pediatrician visit. Everything went well there and Henry’s blood work was all moving in the right direction. 

The following week, Henry had a very hoarse sounding cry, just wanted to be held and sounded congested so we called the nurse line at our pediatrician’s office and Children’s and they both said to bring him in to the ER. Ugh. We then spent several hours  in the ER where they ultimately decided to do a neck x-ray. The radiologist had left for the day and the radiologist from Saint Paul was unable to get our images transferred. After over an hour and a half of nobody coming into our room I push the nurse button and asked for a plan. The doctor came in shortly after and we were sent home with instructions to follow up with our oncologist and pediatrician the next morning. The doctors in the ER or worried that the LCH  may have been what was causing the issue, even though Alex and I knew that was not the case. The next morning, I called the oncologist and they said they thought it was likely a virus. We then went to the pediatrician and he also said it was probably a virus, but if it was not better by Wednesday to call him and he would set us up with an ENT. Henry finally got his voice back on Wednesday. 

 Last week, we had our first follow up with our Oncologist. They did a abdominal ultrasound of Henry’s liver and pancreas as well as a bunch of bloodwork. There are NO lesions on either Henry‘s pancreas or liver! All of them that were there have healed. Everything tested in the bloodwork is also moving in the correct direction. The medicine is working. 

We also got our test results from the fancy lab in Arizona and they found that Henry has a gene deletion causing the LCH. The deletion is in the MEK pathway which is what his medicine is created for.  This is super good news because now if we were to ever change health insurance we have proof of why Henry would need medication so they cannot ethically deny us. 

We will be following up with oncology every three months. They will do the abdominal ultrasound and blood work each time to make sure things are still looking good. They will also do routine echocardiograms to make sure things continue to grow correctly. The MEK pathway is also the growth pathway so they want to keep a close eye on Henry and make sure he continues to grow like he should and the medicine is not inhibiting anything. 

This week we went to the pulmonologist. She also likes everything she is seeing and hearing! Her goal is to keep Henry well and out of her office this winter. She sent us home with a nebulizer in case we need it and if Henry seems to be getting sick I’m supposed to call and talk to her before bringing him to germ filled doctors’ office. 

So everything is going great so far with Henry coming home. Now Alex and my goal is to keep him healthy all winter long! 🤞🏻