5/6/18

On Friday, Nathan completed his last round of blood work and received his medication.  Everything went as planned throughout the week and we are all set.  We flew home yesterday and are now getting settled in.  Nathan has been incredible with taking his medication when asked and following all the steps just like the doctor instructed.  We were very nervous about how Nathan would handle so many new faces and places this week, but he got through it.  Friday was another challenge, but little by little he is getting used to everything.

He will continue to receive his treatments twice a day at home and we will return to Boston in two weeks to have an all day blood monitoring and administration of the medication. There is a team of about 8 doctors and nurses looking over everything going on, so we know Nathan is in good hands.

We can not thank you enough for all of the emails, text messages, phone calls, cards, and prayers that have been shared with us this week.  We were truly overwhelmed with the amount of love and support that was given to us throughout the week.  Although I may not have a chance to respond right away, Mike and I read every email and text and it helps us to get through the long days. THANK YOU!  We are truly blessed with incredible friends and family who always take the time to let us know they care.  Our Boston family made every second we were not at the hospital fun for the boys.  It was great to be surrounded by family while we were going through all of this. We know that we have friends and family who are walking each step of the way with us and caring for us so we can do our best to make sure Nathan is healthy.  We are blessed!

We will do everything in our power to make sure Nathan is happy through this whole process.  He is doing his job perfectly so far and I know you will all walk beside us as he once again steps up and fights with everything he has to beat this.  God is listening and hearing our prayers.

Love,
Mike, Beth, Nathan, Samuel, and Sean

P.S. I think Dottie is ready for a nap!!  She was very busy all week.

We need to bring more Pittsburgh gear next trip!

Samuel was amazing all week holding Nathan's hand. He supported him every step of the way. 

Nathan was so happy to have Dottie, his class friend, for the week.  She had to go everywhere with us!

May 3,

Everything has gone as planned and Nathan was able to receive his first dose of medication.  Due to this being a clinical trial, everything is very controlled and there is a great deal of information.  We have talked to Nathan about what was going to happen today so he was ready to go.  He was so brave with all the pokes, blood draws, and taking the new medication.  We spent all day at Dana Farber, but Nathan was happy as can be.  He turned the corner today and realized this is just part of his job now.  We spent time building legos and having fun between blood draws  The people at Dana Farber were absolutely incredible with all of us.  We are grateful to have this amazing hospital.

Our spot for the day.

Trying to take a little rest with Dottie. He said she was really tired. 

Nothing better than building legos with no distractions! It was the perfect activity for these long days. 

Checklist complete!  Nathan was so excited to put his stars on the chart and keep track of the day. 

May 2

We are 1/2 way done with the first week.  We were able to spent some free time this morning at the Children's museum before we had to head in to the appointments.  Nathan is taking things one step at a time and learning what his new routine is going to be.   We were even able to catch his cousin's baseball game tonight!  We made our Pittsburgh pride known in this Red Sox town!

Absolutely gorgeous day in Boston

Sam has been a total trooper

Fun times at the Children's Museum 

A cookie bouquet from his Pittsburgh friends!  

May 1

Nathan did a great job today.  It was a hard day getting used to a new setting for the MRI, but he came through very well.  The staff at Boston Children's was amazing!  Samuel and Nathan were happy to be together.  Nathan was brave and checked off the 6 of 8 appointments for the week.  Dottie is very busy every day!

I can do this mom

Keeping busy with dad while we wait

Mr. smile maker made the day better

Dotty was waiting in recovery.  All done and ready to go home. 

Samuel wanted to help Nay Nay

April 30

Today was a busy day of appointments, but everything went well.  Nathan is learning the how to navigate his way through Boston Children's Hospital.  We met his new neuro oncologist, Dr. Chi.  He also met his ophthalmologist and had an EKG.  He though it was kind of fun to have all those wires on him.  He is so used to everything in Pittsburgh, so this has been a big transition for him.  Dottie came along to all the appointments which made the day fun.

Day 1 of getting ready to start the trial

Dottie at the Jimmy Fund Clinic

Dottie has his first eye appointment

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. 

September 8, 2017

Happy Fall!!

Another school year has started, all the summer fun has winded down, and we are ready to start a period of new beginnings.  I hope this update finds all of you doing well and enjoying this exciting time of the year.  

The last update I sent was on February 18th.  At that time, Nathan had a scan where the tumor was appearing to be metabolically active and we were not sure what the next six months would bring. We chose to hold off on treating the tumor and let Nathan’s body naturally do the work.  Nathan had another scan on April 28th and we were pleasantly surprised to see that the tumor had remained stable!  It was such a blessing because on May 16th we welcomed Sean Cooper to our family.  We have all been able to enjoy a healthy summer with our new baby boy!  Nathan and Samuel absolutely adore him and want to be with him every second.  I am one lucky mom!

On June  2, 2012 Nathan had his first MRI and our lives were forever changed. Since then, he has gone under general anesthesia anywhere from every 6 weeks to every 3 months for MRI’s to monitor his tumor. There has not been one time when we don’t wake up on those days with worry and fear for how the results of the day will change our lives again. You have all walked his journey with us through these updates and your responses of love and support. His large team of doctors, therapists, and ourselves have monitored Nathan with great vigilance for almost 6 years.  I have monitored Nathan’s symptoms to watch for small changes, we have gone to therapy 2-4 times a week, and we have pushed hard to help give Nathan every tool necessary to make it through his day with success.  When the neurologist walked in to examine Nathan on Wednesday she asked how he was doing.  I summed it up by saying, “I left my computer in the car and have not charted Nathan’s symptoms in 4 months.” She looked up, smiled, and said, “Well that is amazing!” When his oncologist walked in and got the report from her she said, “Beth did not bring her computer and has not charted Nathan’s symptoms since we saw him last. That is all you need to know!”

Well…I think I can finally say it out loud.  It is time for a few deep breaths, tears of joy, and feelings of peace for the space we have been granted.  Nathan’s scan last week was again stable and all of his doctors are pleased with is progress.  We came home from Boston last night with all good news!  We will for the first time hold off on any tests for 6 months.  In addition, he has learned to coordinate his swallow well enough to take everything by mouth.  At the end of the month, he will have his g-tube removed from his belly.  This is a milestone that we never thought would be possible with the location of his tumor.   Although he has been doing well, there is always a fear that the tumor would effect his swallow first or his oral aversions would limit his ability to have it removed.  Every time we see Nathan’s tubie it is a reminder of what is going on in his brain.  As a parent, you never get used to seeing a tube in your son’s belly. Years of therapy and diligent work at home have brought us to a safe place.  When we left to go to his MRI last week it was the first time he said, “Why do I have to do this? Why do the other kids get to go to school and I have to go to the hospital?” We are so grateful the days of having to answer that question are becoming less and less. 

The time has come to truly trust Nathan and take a significant risk.  As I write this tears are rolling down my face because he has come to a place we have dreamed of and was never a guarantee.  Nathan walked into his first day of Kindergarten this year happy, healthy, and medication free.  My dear friend Lissa asked me how I felt about Nathan going to Kindergarten a few weeks ago. My response was that this is what every family we have met from the hospital wants for their child.  It is not a sad time or a time to worry, it is a celebration of life.  It is a celebration that he is alive and healthy enough to go to Kindergarten.  When he walked into Wexford Elementary school with a smile from ear to ear and a bounce in his step, I knew it was time for tubie to come out, get another stable scan, and realize how far we have come. When you ask him why he likes school his immediate response is, “I love to learn mom.” Nathan has learned more about hospitals and procedures than any mom wants for her child, but it has made him who he is and I would never change a thing.  The doctors appointments and therapies will not change because Nathan has to always do a little extra to keep up with the demands of his day, but we will do it with confidence that it’s working. When I saw him with his Boston cousins at the pool on labor day, I knew it was working.  He kept right up with the kids and laughed his way through the day right with them. It was awesome!

Today we wake up after another exhausting two weeks of appointments and travel, but our hearts are dancing and our minds are not cluttered.  We are just thankful!  It’s time to get ready to go to Kindergarten…because he can!

Thank you for walking with us every step of the way!

Love,

Mike, Beth, Nathan, Samuel, and Sean!

P.S.  He just said to me as I finish typing this, “Mom, I think it is time I start using an adult plate.” I guess he heard my thoughts that it is time to move forward!

First Day of Kindergarten at Wexford Elementary School

First Day of Riding the Bus! 

MRI day with baby Sean

Brother love in Boston

Flying home to Pittsburgh with all good reports