October 19, 2018

Happy Fall!!

I hope this email finds you all doing well on this beautiful fall day. It is hard to believe the kids are already in the thick of things with school.  Nathan is in first grade and loves every second of school.  It was a long hard summer for our family and we were not sure how Nathan would do in school all day, but he has shown us that learning is his passion and he is highly motivated to do whatever it takes to get to school every single day that he can. We are truly blessed for the amazing teachers and staff who have made each day perfect for Nathan.

We spent the week in Boston going through Nathan’s three month series of exams that are required for this clinical trial.  This was one of the most intense weeks Nathan has had in a long time.  I don’t think Mike and I fully realized what was going to be asked of Nathan when we decided to enter the trial.  We knew it was intense, but we did not anticipate how hard this was going to be on him.  Although watching your little guy go through test after test and one appointment after the next is not easy, this is what needs to happen to make sure Nathan is safe on this therapy.  There are too many unknowns, so watching every little thing closely is just the way it has to be right now. 

We were so grateful to receive some promising news that the treatment seems to be working.  The MRI showed the tumor to be stable and even a little smaller in some places.  For Nathan’s tumor type, they consider anything that is smaller or stable to be positive.  There are a great deal of unknowns with a pediatric trial, so we are extremely encouraged by anything that stops Nathan’s tumor from growing.  After 6 different types of therapies and hundreds of treatments, we believe we have found a chemotherapy that seems to be a little smarter than Nathan’s tumor!  

The difficult part of this drug is that it has been extremely difficult on Nathan.  The side effects are severe and at this point the doctors believe it is too much for Nathan to continue on this dose that we believe is effective.  The goal of this phase of the clinical trial is to fine tune maximum effective dose.  They don’t really know how much drug to give the kids in order to maximize the effects on the tumor.  We have to reduce the dosage at this point and pray that it will continue to be effective and give Nathan’s body a much needed break.  Unfortunately, we don’t know how much we will have to reduce the drug to help Nathan and once you lower the dose, you can not go back up.  The doctors strongly believe this is a risk we have to take at this point, so we will trust their judgement and pray we get the results we need both for Nathan and the reducing the tumor. 

After we go through these longs days we are truly on information overload and it takes time to process everything that is happening.  After Nathan had his IV placed for the MRI he was sitting in the bed and said to me, I feel like I am in a dream and I don’t know what is going to happen next.  It took all of my strength as a mother to hold back my tears and comfort him.  That is the fear and worry Mike and I live when we wake up every single day.  We just don’t know what is going to happen next, but we have learned to live in the moment.  If we let our fears overcome our hopes, this road would be impossible.  We are asking a lot of Nathan right now.  Many days too much, but he always finds a way to get up and keep going.  When we were deciding what to do about the medication I decided to ask Nathan what he wants to do.  I said, “Nathan is this too much for you?  Do you need a break?  Are you ok with it being harder to run and play?” He quickly responded, “I am ok mom.  It is ok.”   He is wise beyond his years and knows exactly what is going on.  We have never told Nathan his exact diagnosis, but he understands this is complicated and serious.  He understands that he has to do what is asked of him and he never gives up.  Day after day, he fights!   Shortly after Nathan was diagnosed, we all started to wear bracelets that said, “Never Give Up.” I don’t think we understood exactly what that meant and what we were going to have to do.  I still don’t think we fully get it.  As hard as our days can be at times, it is nothing compared to many of the families we see every month.  Dana Farber Cancer Institute is one of the best cancer hospitals in the world. People travel from all over the world in hopes of finding a cure for themselves or their child.  This is now a place we spend a lot of our time and we are walking side by side with incredibly strong families and children who do not take life for granted.  God gave us this gift and we are thankful for the opportunity to have these talented physicians and support staff taking care of one of our most precious gifts, our son. So as much as it is hard to go back and forth every month, there is nothing we would rather do and every sacrifice is for him.  Samuel and Sean are amazing brothers who support Nathan is ways they don't even know.  Everyone in the family has a job and we work together to make the most of each day. 

Our family and friends are the rocks who make this journey possible.   We will continue to be the best advocates for Nathan that we can because we know we are not alone.  We know that we have a team of people who walk beside us every single day to make sure we feel supported and loved.  We know that this time in our lives is dedicated to bringing Nathan to health.  Thank you for being there for us and for all you do!

Love!

Mike, Beth, Nathan, Samuel, and Sean 

              

                   

           

                          A trip to the pumpkin patch!                             We make a chart every month!              

July 27, 8018 

Good morning!

I hope you are all enjoying your summer!!  It is hard to believe August is right around the corner and school will be here soon.  Time is going way too fast!  Nathan will be in first grade and I am not even close to ready to send him to all day school!!  We know Nathan has been in your thoughts and prayers and I wanted to give you an update on what has been happening the past three months since he started the clinical trial.

We got home yesterday from another long week in Boston.  Nathan had to go through the same series of exams that he did before we started the trial.  It was three days of seeing countless doctors, nurses, procedures, pokes, and exams.  This was probably the hardest time on him so far because his body is weak and everything is a challenge right now.  When you are tired, the last thing you want is people poking at your body all day long.  He always rallies and does what he needs to do, but this was a really hard week.  Mike and I did our best to stay positive and keep him happy and busy, but our hearts were heavy as we watched our son endure so much. 

On Wednesday, he had his first three month MRI to show the progress of the tumor since the trial started on May 3rd.  We were please to see the tumor is slightly smaller since beginning therapy!!  This is extremely encouraging news because Nathan has had a great deal of side effects and it was impossible to tell if it was being caused by the drug or the tumor.  We will not know for another three to six months if the therapy is truly effective because it takes time to build up in the system.  This is a drug that does not seem to show false results or rapid changes. If it outsmarts the tumor and we see smaller measurements on the scans then it is most likely killing the tumor cells little by little.  Nathan’s tumor is in such a small critical space of the brain stem, so any small change is a win!   

In June, six weeks after Nathan started the therapy he was hospitalized for drug toxicity.  We were not sure at the time what was causing the issues, but we now know the drug is extremely hard on Nathan’s little system.  He lost his ability to hold up his body, has had significant GI issues, bad skin toxicity that has caused rashes and nail infections, extreme fatigue, and mood and personality changes.  He had to come off the therapy for 10 days.  At that time, we saw everything improve.  After restarting the drug, everything came back.  Until this week, we did not know if the drug was working so we needed to keep him at the highest dose because that is the only dose that has proven results.  He is unable to continue on the highest dose, so we reduced it and hope that it will continue to attack the tumor and make things easier on Nathan’s body.  He will not be able to remain on the drug if some of these symptoms do not resolve.  Over the next three months we will work to find the optimal dose. 

Nathan is fighting really hard to continue with his day and do the things he loves to do.  We have learned how to make things easier on him and still enjoy the day.  He is frustrated and knows exactly what is going on now.  He is older and wiser which is good and bad.  We are so incredibly grateful to have Sean and Samuel who keep Nathan active and happy.  They all love each other so much and are happy to be together.  

Although the past three months have been some of the hardest times in our lives, we know we have an army of people helping us through it.  We have the greatest family and friends in the world that make sure Samuel and Sean are being taken care of while we have had to do so much with Nathan.  Samuel is incredible with Nathan.  He instinctively knows Nathan is not his best right now and helps him do the things that are hard on him. Although, he does set his boundaries.  When Nathan asks too much Samuel has now started to reply with, “I am not your assistant.  I am Samuel, AKA Boss Baby.”  Nathan then snickers and says, “He figured me out again mom.” As I am writing this, they are at the table hugging and telling jokes.  Thank God for brothers!

Thank you for your emails, cards, phone calls, and texts of love and support.  We will continue to take things one day at a time and be grateful for each healthy day and each win.  This week was hard, but it was definitely a WIN!

Sending love and hugs to all of you!!

Mike, Beth, Nathan, Samuel, and Sean

               

Ready for the flight to Boston with Icy and Pierre!             These two just keep going and going!

Not so happy waiting at the ophthalmologist instead of playing with the cousins!

May 17, 2018

Nathan completed his second cycle today.  He was a total champ.  He was patient with the nurses during the pokes and helped them with all the blood draws.  We have met the sweetest nurses here.  They are great with Nathan and walk him through everything step by step.  They answer his ten thousand questions and teach him the process so he is not scared.  So far, everything is going pretty smoothly.  Nathan and I enjoyed time together playing, reading, writing comics, and building legos.  It's amazing how much you can get done when you have the day to just play.

Thank you for your continued thoughts and prayers.  We are doing our best to just take things day by day and not get overwhelmed by the big picture.  Some days are definitely easier than others, but Nathan pushes himself every day to just keep on going, so we will do the same.

We will come home tomorrow for a week and then come back again at the end of the month.  So far....so good!!

                   We found our spot and built T-Rex       Nathan knows the airport routine better than I do.

                             Boston, here we come!                             Second long day complete!!
                                                                                                    Everything went well.

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.