Noah has had infusions 3-8 and only 4 left. So far he has been tolerating them all well with no side effects noted. He has been a trooper, we have seen a huge improvement in him. Noah has been more alert, eating a lot more and gaining weight. Labs are drawn every two weeks and the direct bilirubin has been about the same, his liver enzymes fluctuate, however, his biomarker has been trending down, liver and spleen have not increased in size, which is great! If his biomarker continues to go down, he will be eligible for phase 2! The doctors are optimistic and have definitely seen an improvement and want to continue helping Noah in anyway possible. In two weeks we find out if he is eligible for Phase 2. We are praying that his bilirubin decreases and his biomarker continues to decrease so we can continue with this trial.
On Monday we got to meet the other baby that is in the clinical trial, this disease is extremely rare so the research team has been really surprised that they have two babies at the same time, it took a few years to even get one patient, now they have two! The other baby has had a great outcome with the drug, he continues to shine and is doing extremely well. I am so happy to see him doing so well, him and his family have given us a lot of hope. We pray that Noah will have the same impact and hopefully help get the drug approve by the FDA.
St. Louis has been great so far, it’s a beautiful city. My mom, Justin and I have been doing a lot of exploring. The zoo is huge with so many amazing animals, the museums are great and the botanical garden is so beautiful. Forest Park is impressive, a natural oasis in an urban environment. We love going on walks and admiring the beauty of nature. We have about 3 weeks left and it’s going by really fast. We are enjoying our time here and are extremely thankful for all the support we have received. Thank you to everyone that has kept us in your prayers, we know God is with us.
