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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.

Noah completed his second infusion on Monday. So far he has been tolerating the medication without any side effects. We have seen an improvement in just one week, his appetite has increased, he’s gaining weight and he’s more alert. The doctors are very optimistic this drug will work for him and hope the FDA will soon approve it, for now people are able to access this drug through compassionate drug use and clinical trials. 

Today the genetecist said that Noah will be the HERO and will help many kids around the world who are battling this terrible disease. That gives us a lot of hope and reaffirms that we made the right decision doing this clinical trial.

Noah was also discharged from the NICU today. We are so thankful for the amazing nurses, doctors and multidisciplinary team that have been helping Noah, he is so lucky to have a great team cheering him on. Now we continue with outpatient infusion twice a week for the next 6 weeks. 

We are extremely thankful for our WONDERFUL community and everyone that has donated, prayed and reached out to us. Noah is so fortunate to have this incredible community that has come together to help him in his journey. Mrs. Trish Biondeletti and her Chi Sigma Sorority have been more than amazing with their generous donation, we are incredibly thankful for each and everyone of you. Thank you for your PRAYERS and support. 

For now, we appreciate every second we get to spend with Noah. Watching him grow is an honor and we will continue to fight and do everything we can to help him. Our faith is stronger than ever, we don’t know why things happen but we know God has a reason for all things that happen, we may never understand His wisdom but we have to trust His will.

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen.”

‭‭Jeremiah‬ ‭29:11-12‬ 

A week ago, we had our first conversation with with coordinator for this program. It’s hard to believe, that today we have been in the program at the hospital for four days. It is unimaginable, that this could happen so fast. I’ve never gotten stuff done so fast. Amazing the mountains you can move, when something is so important to you.

Noah is doing great. His appetite has doubled, he’s gaining weight quickly, and seems to be more alert. Could this really be working? We are so hopeful.

Today we hijacked Noah out of his crib, and moved his IV tree over to the couch so that he could spend some time with us. We watched a show that documented this disease in a couple of other children in the US. It’s called “Something’s Killing Me” season 2 episode 5. A good watch, you can find it on demand. It’s also floating around youtube. Here’s the link: https://youtu.be/PK61NQySjDM

Tomorrow morning, I will be up against one of my biggest tests, I have to leave these two beautiful babies of mine to go to work for a little bit. It is hard, but it is our reality, and I know I am leaving them in the best hands possible. The doctors and nurses here have been amazing.

In to take my place comes Laura (Larissa’s mother), she has been a saint. I don’t even have words to tell you just how good she has been to Noah. That lady is quite literally an Angel. So good with him, and so good to us. Just like Larissa, she dropped everything she had going on to join Noah on this Journey… When we booked her ticket, I asked how long she wanted to come for. I didn’t receive an answer, just a blank stare, with a puzzled look. It became clear. I was only getting her a one way ticket, because she was in this for the long haul.

Speaking of Angels, Larissa’s best friend Georgina, who I like to think of as an additional sister, created a gofundme page. This too was a hard one for me. I have never taken “hand outs”, and have always been too proud to accept help. I explained to Georgina, that it’s the reason I am traveling back and forth, is to support our family in this journey. I also added that “how can we ask other people for money, when we both have brand new cars, a boat, and a beautiful house in the keys?” She replied, with some numbers on just how much this life is going to cost us, and explained that the money is for the baby and his care, and that the boats and cars, are just things, and I will never be able to fully enjoy without a healthy baby. How can I argue with that? I can’t.

https://www.gofundme.com/noahs-hope?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_shareflow_m

Day one was long. Starting at 4:30 AM, we left our home in the keys. We were worried about traffic, so even Justin wanted to leave early (He usually likes to get to the plane right when the gate is about to close). We arrived at the airport with plenty of time to spare. Our plane ride was uneventful, Noah did absolutely amazing. He slept the entire ride and didn’t make a peep.

We were greeted at the airport, by Laura, the angel that coordinates all of this. I quickly learned that we have something in common, Laura is a nurse too! On the car ride, we learned that we weren’t going to the hotel, instead straight to the Hospital. They didn’t want to waste time, not one second.

We went straight to the NICU. This NICU is like none I have seen, there are 120 beds and 60 nurses on the floor at any given time. Wow! A team of doctors awaited us, and greeted us with smiles.

After introductions, they immediately started drawing labs, and getting his baseline measurements. We were soon seen by the PICC team, to insert a PICC line. A PICC line is like an IV except the tube goes all the way to tip of the heart. This allows doctors to not only administer the drugs through the line for seven weeks, but also draw blood. A little invasive, but this means Noah only had to be poked once. No more needles for a little while. Thank God.

Labs came back, and they decided it was time for the first infusion. They came in with a syringe of the drug that will give us hope. VTS-270, also known as cyclodextrin. They hooked it up, and infused over 2 hours, He was in my arms the entire time. Was it scary? Of course.

My baby is so brave. So Strong. So Innocent. I wish that Justin or I could just take it all away from him and absorb it into our bodies. I know that either of us would without question. Unfortunately it is not an option.

One thing is for certain. Our baby is cute. Adorable actually. Of course we have always thought this, but the entire staff seems to reinforce that. They all stop by and talk about how cute and handsome he is. One going as far as to say he is way too beautiful to be a boy, that he must be a girl. It felt good to laugh, when she said that. There has been so much crying lately, that I forgot how good it felt to laugh.

Everyone has been so nice. So supportive. We took a little while to read all of the amazing comments on our social outlets. What a blessing to be loved by so many people. If there was any question that God would get the message about our little boy needing help, there is not anymore. Literally thousands of prayers are being said every day. Thank you all so much.

We will keep fighting. Thank you all for the support. The Army that Noah has behind him is huge, and getting bigger everyday. This boy is going to change the world with the help of all of you.

This woman right here.

I don’t even know where to begin. I am so proud of her. Her courage. Her bravery. Her strength. She will do anything for this baby. 

Does she have her moments where she breaks down and loses it? Sure. Does she shake it off and go back out and fight? Absolutely.

She is on the front line, she is in the trenches. She is the one fighting the battle. She will be the one living out of a suitcase for the next seven weeks.

Uprooting her entire life, and going where she needs to go for Noah. It doesn’t end. After this it’s likely Chicago every two weeks, for an undetermined amount of time. Was there ever a question? Not a chance, she didn’t even blink an eye. 

Noah is so lucky to have her. She is his strongest advocate, his biggest fan, and his ultimate protector. She will change the world for him, and she will fight this disease to the very end. She won’t give up. 

Today was a big day. Noah received all three sacraments of the Catholic Church. Baptism, first communion, and confirmation. He did great! Tomorrow we get on a plane and head to St. Louis.

Tomorrow Noah starts his clinical trial on a drug called VTS-270. This drug is crucial to Noah’s livelihood. If it can hold off the damage until a cure or better therapy is available, then we have a chance.

I don’t know if we are ready, but we are packed. We have everything we need and two plane tickets in hand.