April 29, 2018
Good evening!
Spring has finally arrived!! It has been a long winter in Pittsburgh. We are all ready to be outside in the fresh air. The last update I wrote was in September. Nathan was just starting Kindergarten and we had received great news that Nathan was stable and we were going to stretch his MRI schedule to 6 months for the first time. We enjoyed every single second of those 6 months. It felt spacious and calm. It was a feeling we were not used to, but we quickly settled in and loved it! Our Sean grew into a little man and will be turning 1 next month. Nathan said this week, “God knew what he was doing when he gave us baby Sean. He is just so cute mom!”
On January 29th, Nathan had his last MRI. We were so hopeful that Nathan would continue to enjoy having the opportunity to enjoy being a kid who didn’t have to worry about regular appointments and hospital visits. Unfortunately, the scan showed subtle growth from the previous scan and noticeable growth from 2 years ago. Everyone on his team believed it was time that treatment was again necessary. We were given several options and decided the best choice for Nathan was a clinical trial for children with tumors like Nathan’s. We accepted the situation and were ready to start therapy at the beginning of February. Shortly after we made the decision to start the trial, it closed for regulatory issues as the trial moved from Phase 1 to Phase 2. Every week we believed it would open and then something else would come up. We finally received word last Wednesday that the trial has finally opened. We will start tomorrow.
The trial is currently only offered in Boston at Dana Farber Cancer Institute where we go for his regular oncology care. We will be here for one week to go through a comprehensive medical screening that involves ophthalmology exams, cardiac testing, an MRI, neurological exam, and blood work over two days. If he passes all the screenings, he will receive his first dose of medication on Thursday. He will then take a liquid form of the medication at home twice a day. We will have to come back to Boston again in two weeks and then it will be monthly for the next 1-2 years. When you enter a clinical trial all testing and monitoring has to be done through the institution offering the trial. We are hopeful that Nathan will tolerate the drug well and we will not have to travel more than what is outlined in the protocol.
The last time Nathan was on chemotherapy he was 4 1/2 years old. He is two years older and is able to figure out what is going on and what is going to be expected of him. During his last MRI, he was very scared and knew that the medication they were giving him to fall asleep was going to make him feel tired. He did not want any parts of it. As parents, we tried to approach it from a couple of different angles, but we were not making any progress. He looked at us and screamed, “I don’t trust you. You are lying to me.” In that moment, I held back my tears and realized he deserves to always know the truth. We have to be honest with him so he will trust us and be brave to do his job.
As parents, we have the ability to put things in perspective. We have lived with watching Nathan battle his brain tumor for 6 1/2 years. At first the devastation hit, but Mike and I had to pick ourselves up and just hope and pray there was a good solution to treat the problem. We thought giving our 10 month old chemotherapy was difficult, but this is significantly harder to accept. We are at a point where we have exhausted the first line defense chemotherapies. As Mike and I have read over the 27 page consent over the past few days we are apprehensive to take this risk for Nathan. There are just so many unknowns with side effects and complications. We also recognize, however, this drug is a promising breakthrough for pediatric brain tumor patients. This drug will target the exact pathway that stimulates Nathan’s tumor. It is a pathway that is at the top of cancer research right now because it is the same pathway associated with melanoma. It has a great deal of hope and promise, so we will take many deep breaths over the next several days and trust this is the right choice.
In addition to making this significant change in Nathan’s treatment plan, we were also told that Nathan’s neuro oncologist in Boston is leaving Dana Farber at the end of the month. Almost 4 years ago we searched the country for a doctor who was not scared of Nathan’s case and who believed he could cure Nathan. Every doctor we met from the time Nathan was diagnosed wanted to use an aggressive approach that would leave Nathan with long term side effects and significant other complications. Dr. Kieran was the first person to look us in the eyes and give us hope that he could help our little boy. Losing him as the leader of Nathan’s medical team is an enormous loss for us. He is at the forefront of all research for Nathan’s tumor type. He is not only good for Nathan, he is who every child with this diagnosis deserves to have behind the scenes fighting for a cure. We will now put our energy into finding another doctor to take over Nathan’s case. The right person will come into our lives and help guide the team with confidence the same way Dr. Kieran has done.
We have a long week ahead of us. Nathan has his hospital demands vs Boston cousin time down to a science. There is nothing more important this week than making sure Nathan feels secure, loved, and safe. If we can accomplish this he will be brave and allow the doctors to do their work. We will put our own fears and worries in a box as we navigate this new treatment plan. We are so blessed to have amazing family in Boston who welcomed us with open arms. Nathan and Samuel are just excited to be together and here with their cousins. Like Nathan said today, “We had to bring Samuel along because he is the entertainment committee.” Samuel has started coming to most of Nathan's appointments and they look after each other. It is a very special bond.
We know you have all prayed for Nathan throughout the years and today I ask for your continued prayers. Please continue to pray that we ask the right questions to find the greatest minds to help us cure Nathan. Please pray that he passes all the screenings and is eligible for the trial. Please pray that his body tolerates the medication and it is an effective therapy for his tumor. Please pray for our strength so we can give everything we have to Nathan. This is not going to be easy, but we will get through this because of all of you! Like I have said in the past, we know how to do this but we just wish we didn’t have to.
I will send another brief update at the end of the week to let you know how everything went. Nathan and I will also update the blog throughout the week because his amazing teacher gave him the class furry friend to bring along. Nathan insists on journaling everywhere Dottie goes.
Thank you for your love, support, and prayers!
Beth, Mike, Nathan, Samuel, and Sean
Nathan and Samuel on the walkway to Dana Farber
Saying goodbye to Sean when we left for Boston. We were so sad to leave our little man for the first time.
Nathan welcoming in Spring!
Nathan showing Samuel the ropes at Children's
Samuel does not leave Nathan's side when we are at the doctors
We are so fortunate to have Uncle Mike and his family in Boston. Nathan is super lucky to have his uncle at his appointments.
