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

February 18, 2017

Hello family and friends!

We truly hope this email finds you all doing well.  In Pittsburgh, it was 60 degrees today with a bright sunny sky.  It was a perfect way to end a long two weeks of several doctors appointments and long days of travel.  Although we are tired, our hearts are full of sunshine and hope because of the wonderful news we have received. 

The last update I sent was on August 31st.  At that time we had just received news that Nathan’s MRI was stable.  It was 5 months since his last chemo treatment.  On February 8th, we went into Nathan’s MRI with great apprehension and concern based on the December scan and several other signs that were concerning.  When we received the initial results in Pittsburgh, they told us the three spots we have been monitoring have grown.  Our appointments with Nathan’s doctors in Boston were not until the 15th.  The week between the MRI and the appointment seemed like an eternity, but we remained hopeful Dr. Kieran would have a positive response to the scan. 

When we got to Nathan’s appointments at Dana Farber, Nathan’s neurologist immediately said, “The scan’s look good.  We have no concerns.” In that moment we were quickly reminded that every ounce of time, energy, and money that goes into traveling to Boston every 2-3 months is worth it.  It was by far the best decision we have ever made for Nathan’s care over the past 5 1/2 years.  Nathan’s oncologist and neurologist proceeded to thoroughly examine Nathan and watch his every move.  When they took him in the hallway to watch him run, he said, “Look what I can do.  I learned how to skip.”  He skipped up and down the hallway with such pride.  His neurologist looked at the oncologist and said, “That is all I need to see.  That is how we know we do not need to treat Nathan’s tumor.” It may seem like a very natural task for a 5 year old to skip, but for Nathan we know how many things have to be working well for him to coordinate this type of gross motor movement.  His doctors then discussed with us that although we are seeing waxing and waning inside the tumor, we will continue to wait and watch until we see his symptoms regress or the actual size of the tumor starts to grow. We are walking a very fine line because we know the tumor is metabolically active.  It is not as stable as we, his parents, want to see, but this is where being under the care of one of the best pediatric neuro oncologists in the country allows us to sleep peacefully. There is no greater feeling than having such amazing minds committed to Nathan’s case.  It is not grey to them.  They have seen it all and know when it is time to push and pull. 

Following the MRI on February 8th, Nathan was taken into the operating room and several diagnostic tests were performed by his ENT doctor who manages his breathing and swallowing.  Nathan was diagnosed with a left vocal cord paralysis as a result of the tumor location.  Over the past 2 years, we have aggressively worked with therapist and physicians to rehabilitate this area of his voice box.  There is no proven data on best practices for this kind of diagnosis, so we have had to trust ourselves and his great therapists that we were doing what was best for Nathan.  He has been a trooper to go through 2 days a week of intense vocal therapy and facial stimulation that is not an easy thing for a child to tolerate. He also has to deal with a mommy who is a voice teacher and thinks that pitch glides and breathing exercises are fun to do several times a day.  We received amazing news on the 8th, that Nathan is now receiving complete closure of the right and left vocal cords.  His brain has figured out how to retrain the surrounding muscles to do the heavy lifting for an area that has such great weaknesses.  His ENT doctor, who is one of the brightest minds we have met, said that he knows what this is, has studied it throughout his career, but has rarely seen it happen.  He said, “Nathan Leckey is one of the reasons why he loves medicine and makes him go back to work every day.  He has done something no one would ever imagine based on the picture of the scope and MRI.  Based on the picture, he should not be able to swallow, drink, sing, or breath the way he does.  He is one amazing little boy and I love working with him. We just never know what Nathan is going to do next.”  

On December 17th, we saw that he was doing well and decided to stop using his feeding tube.  Nathan typically only drank 1-2oz of water per day on his own and the rest was given through his feeding tube.  Once again, our little guy met and exceeded our expectations and did what we did not think was possible with his deficiencies.  He has successfully gone from 1-2oz a day to 20oz a day in two months and stopped using his feeding tube for the first time since June 15, 2012.  This is one of the greatest milestones in Nathan’s life.  The location of Nathan’s tumor controls all of his vital functions and somehow he is figuring out how to overcome the impact on the nerves and function just like every other 5 year old. 

Little by little, Nathan’s body is starting to recover from 4 straight years of toxic chemotherapies.  Although we are seeing miraculous recovery, there are still many things that Nathan has to work through to make up for what his body has gone through.  His level of fatigue and sensitivity to day to day tasks makes for challenging days, but we will continue to trust that his body will not stop fighting and recover with each passing day.

Mike and I have been given a challenge  to make sure Nathan has the best chance for not only a cure, but the ability to live life just like every other child.  We make difficult decisions every day on how hard is too hard to push him.  Believe me, it is so hard to not hand him life in the easiest way possible.  During these amazing 9 months of being off treatment we have made the decision as parents to help Nathan fight harder than ever because this is when recovery is possible.  We saw the clear road and went for it.  Nathan never resists when he has to work hard for his health.  He tells the anesthesiologist what color needle to use, how to place the IV, tells his mommy to stop talking so he can breath through it, tells me he doesn’t need his tubie any more he can do it himself, and makes us watch his new tricks of skipping and jumping.  I know the “boo boo” inside Nathan’s brain is still there and active, but we all refuse to let it stand in the way of allowing Nathan to be a strong little boy who can accomplish whatever he wants.   Nathan and Mike were practicing t-ball on the driveway today.  At one point, I heard Mike scream with such pride, “You did it Nathan…you did it all by yourself.”  He really is figuring out this life that seemed so questionable 5 years ago all by himself. 

In my last update, I talked about the necessity as parents to believe that Nathan’s journey means something.  I do believe his story is a perfect manual for life.  Whether it is a medical, personal, professional, or spiritual challenge, Nathan has taught us never to settle.  Always be the person you are proud of and NEVER give up on something you think is possible.  Trust me, no one knows better than Mike and I that life is not always equal or fair.  We have been blindsided with countless horrible reports and set backs.  We always choose to move forward with a positive attitude and figure out how to gain the necessary knowledge to make tomorrow better.  All of your love and our strong faith in God is the reason.  Thank you for riding the waves with us.  We don’t know when the next major challenge will come, but we know you will be there with us every step of the way.  The night of Nathan’s MRI he asked me in such an innocent voice, “Mommy, when is my boo boo going away?” The tears rolled down my face, but I told him the truth.  It may never go away, but it will never stand in YOUR way either Nathan.  I have to believe that is true. 

Thank you for celebrating these moments of sunshine and hope with us.  We could not be more grateful for each day God gives us with Nathan, Samuel, and our baby boy on the way.  Things may get a little crazy in the Leckey house with three little boys running around, but we can not wait to share our laughter and love with another little brother. 

Love to all of you!

Beth, Mike, Nathan, Samuel, and baby

Nathan and Samuel sitting in the Ambulance wagons that were made by his friend Tony the Paramedic!

Nathan at Dana Farber Cancer Institute after getting a great report from his doctors!

Nathan and Samuel enjoying time with their cousins at Learning Express in Lexington, MA.

Nathan LOVING the 18 inches of snow that were waiting for us in Boston. 

Good evening!

Happy first day of school to all of the amazing children and teachers in our lives who will start their first day of school this month.  As a teacher, I know the excitement of having the kids walk in the room for the first time is one of the greatest moments of the year.  It is a time of new beginnings, excitement for the year ahead, and an opportunity to reach goals you didn’t know were possible.  

We have spent the last three weeks gathering information, completing several diagnostic tests, and meeting Nathan’s extensive team of doctors, both here and in Boston, to make sure we have all of the necessary information to best treat Nathan.  We have received overwhelming reports from everyone that they believe Nathan is doing extremely well.  

His last chemotherapy treatment was on April 11th.  I could not be more excited to say that next week Nathan will be chemo free for 5 months!!  His MRI last week showed that the tumor has continued to remain stable which is a critical piece to treating low grade gliomas.  The doctors feel that if we would have seen a rebound from the Avastin therapy it would have most likely happened during the first three months off treatment.  Although this was not the treatment plan that was outlined for Nathan in April, we trusted ourselves and Nathan’s medical team to feel comfortable enough to just wait and watch for a few weeks.  A few weeks has now turned into a few month.  We can only hope that a few months will turn into a few years of no treatment.  We know the key to treating Nathan’s tumor is to find that stable period for several years where no treatment is needed so we do not exhaust a decreasing list of possible chemotherapy options.  We will continue to wait and watch his neurological symptoms in hopes that they do not progress and through specialized therapies he learns to overcome the deficits. 

Since Nathan has been on therapy since he was 10 months old, we only know a Nathan who battles the effects of chemotherapy and never complains.  We never realized just how much it was effecting him.  We had no idea what Nathan’s body was capable of physically until we watched the recovery process happen this summer.  It has been the greatest summer we have had in five years.  Nathan is strong, he is full of energy, he is challenging himself, he is keeping up with the other kids, and most of all he feels confident to take risks and push himself.  A few weeks ago he tested for his first Tae Kwon Do belt.  We all sat there while he did everything the Master asked of him without rest and without modifications.  If you told me 6 months ago what he had to do, I would have said there will need to be exceptions because Nathan can not physically do those tasks.  Well, I was certainly proven wrong and I couldn’t be happier.  My family and I all sat there and supported Nathan as he proved to us once again, I am not giving up. It was one of those special moments of firsts that we will never forget. 

As you know, Nathan’s oncology care brings us to Dana Farber Cancer Institute in Boston.  We usually go every 10-12 weeks following Nathan’s MRI.  Over the past three months we have had to go every month due to the leave of his oncologist in Pittsburgh.  We are always so grateful to Mike and Jaime for opening their home to us.  We could not do this without them. They turn our “business trips” into days full of laughter and fun.  During our last night there, we had the opportunity to spend the evening with two of their best friends, Lori and Kenny.  They are an amazing couple of deep faith and commitment to their Mormon church.  We had never met Kenny and he didn’t know very much about Nathan.  The first thing he asked us was, “What is the most important thing you have learned from your experiences.”  I must say, that took me a little off guard since we have never met.  What a great question to ask.  I have not been able to get that question out of my mind since he said it.  That question is hard because it really is what defines our family.  I would love to say we are the same old happy go lucky family that we were five years ago.  I would love to say that we lead a normal life.  I would love to say that we try not to let it effect us, but none of that is true.  This experience is now what dictates how we spend our days, our relationships with family and friends, how we look at our future, and most importantly our faith in God.  That simple question is one we should all ask ourselves.  If we don’t stop to reflect on how the “good and the bad” have changed us then the experience is useless.  Nathan’s fight to a cure can not be useless. To find purpose in this challenge we have been faced with, Mike and I have tried to use what we have learned to educate other families, support the causes we believe in most, and show God that we will always live in a way that He chooses for us.  We were not given a choice when we received Nathan’s diagnosis on June 2nd of 2012, but we are given a choice of how we use these experiences to shape not only our lives, but the lives of everyone we meet along the way.  Nathan and all of his little friends who fight for their lives every day give us the guidebook to life.  If we are willing to just take a moment to stop and watch, these children teach us everything.  They teach us to be genuine in our relationships, honest with ourselves, ask for help when we need it, cry when we are scared, and believe that anything is possible if you love deep enough.  Nathan absolutely knows that he is loved by so many people and they are counting on him to be the best he can be. 

On October 1st, Nathan will celebrate his 5th birthday.  This will be his first birthday where he will be chemo free!  Now that is something to celebrate!  He and Samuel have chosen a superhero theme which seems to be a perfect fit for this year. Just like the first day of school, we are certainly living a time of new beginnings with no chemo, excitement for living the next three months without frequent doctors appointment and heavy medications, and watching Nathan achieve goals we never thought were possible.  The diagnosis never goes away, so it is hard to celebrate where we are.  Although, you better believe we take these times to breath deeply, recover from what we have had to do, and thank God for each healthy day. 

May God continue to guide you as you battle your own challenges in life.  So many of our close family and friends have significant health issues of their own, yet never forget us.  My final prayer ever night is, “Thank you God for all of the prayers you receive for Nathan every day.  I know you are listening.  Please pray for those who remember us every day. “

Thank you all!

Love,

Mike, Beth, Nathan, and Samuel

www.nathanleckey.blogspot.com

Thank you for all of your support with the Make-A-Wish fundraiser in July.  We hit the $10,000 mark and will be able to fully grant between two and three wishes.  Since we are fully funding a wish, we will be considered wish makers and be able to follow the wish we are funding.  I will keep you informed of what the children choose and send pictures.  You can also follow their progress on Nathan’s blog.  Thank you to Bob and Debbie Busteed for an amazing day for the kids!

June 2, 2016

Summer is here!

I know so many of you are celebrating these last days of school and the beginning of fun summer activities.  There is no greater feeling for a child than the last day of school!  Enjoy every second with your friends and family and safe travels during all of your summer vacations. 

Today we are full of many different emotions and feelings.  Four years ago today, Nathan was diagnosed with his brain tumor.  He was admitted to the hospital at 7 months of age and we had no idea what was about to hit us. We spent the next 32 days at Children’s trying to help our baby recover from brain surgery.  This is what people mean when they say, “You can’t prepare for tomorrow, so make sure you enjoy today.” From two weeks of age we knew something was not right with Nathan, but we never imagined we would receive the devastation that the diagnosis of a pediatric brain tumor brings. 

On June 2nd, 2012, our lives were forever changed when Nathan came out of his first MRI.  Little did we know there would be 24 more to follow and over 80 chemotherapy treatments before his 5th birthday.  The memories of June 2nd are ones I try not to visit very often, but they are memories that humble us and make us who we are today.  They give us the ability to fight for Nathan’s health with everything we have.  They are the memories that will forever change the way we look at each day and the relationships we have.  I don’t forget those memories, I try to use them to make a positive impact on our lives moving forward. 

I can remember the conversation like it was yesterday that we had with the oncologist for the first time.  Our bodies were tired, our minds were numb, but we knew we had to focus to give Nathan the best possible outcome.  She outlined what the coming days would look like and the typical plan for a child like Nathan.  As tears came down my face, I can remember asking her, “Will Nathan make it to his first birthday?” She quickly replied, “Yes, and we will make sure he has many many more.”  She was right. 

Today, we don’t forget those difficult weeks in 2012, but we do take time to celebrate what we have been given four years later.  On March 7th, Nathan had his last MRI.  At that time we were in an extremely difficult place.  The scans were not giving us the information we needed, but Nathan’s body was telling us it was time to switch chemotherapies. Due to side effects, he could no longer stay on Avastin and we had to choose yet another treatment plan for Nathan. We spend several weeks making sure we did everything we needed to in order to choose the right path for Nathan.  His next course of treatment was initially denied by insurance.  We spent three weeks working with the insurance company to get the necessary approval.  At that time, we were beside ourselves because we knew we needed to get started on something quickly.  Nathan’s kidney functions were also elevated, so even if we were able to start therapy, we had to wait for his kidneys to recover.  There were quite a few things that were not moving as quickly as we needed, but we are grateful for the unexpected administrative and medical hang ups because they completely changed the course of Nathan’s treatment plan.  As a result, we are in a much better place. 

Over the past few months, Nathan’s symptoms have gone from periods of extreme concern from everyone involved in his care team to looks of total confusion.  His symptoms are all over the place and are not giving us enough indication that we actually need to start the next treatment.  He had an MRI last week and the scan was completely stable.  Although this is what we pray for, we were not certain that is what we would see.  If there were not a series of complications that occurred over the past two months, we would have started on his next chemotherapy they he truly may not need right now.  We will meet with his doctors in Boston at the end of June to reassess the plan, but as of now, Nathan has been chemo free for 8 weeks and it is our every hope that he will remain that way for awhile.  We don’t know if we will have to start therapy in a week or a year, but we are certainly trying to make the most of every day he gets without the heavy medications in his system.  He started chemotherapy when he was 10 months old and besides a three month break last year he has been going nonstop.  His body is very tired and is ready for a much needed break.

We are certainly not following a clear path, but we are trusting ourselves to be patient enough to wait and watch.  There are so many balls in the air with Nathan’s case and we hope we are doing everything right to give him the best chance for a healthier life.  In addition, we also found out that the only neuro oncologist in Pittsburgh has resigned and we will be transitioning to a new team of physicians in several months. The most important thing the children in the neuro oncology clinic need is consistency.  Our prayer is that the right minds come into our children’s lives to help guide the collaboration that is necessary for a case like Nathan’s. 

One of the highlights of this past year has been Nathan’s Make-A-Wish.  Two years ago, many of you joined us at Bob and Debbie Busteed’s home for a spectacular night of fundraising for Nathan’s fund.  We raised close to $25,000 in one evening for pediatric brain tumor research.  Bob and Debbie have dedicated themselves to helping others in need.  They are an inspiration to me in so many ways.  They have once again decided to do a fundraiser for a cause they believe in.  Debbie called me a few weeks ago and asked me if I would choose where we would like the money to go.  Make-A-Wish has not only touched our lives, but it has made a positive impact on so many of our friends from the hospital.  It gives families of children with life threatening illnesses a moment of hope and joy.  It brings smiles to the faces of so many kids who show their strength and bravery day after day.  Without a doubt, we would like to give back to Make-A-Wish this year by participating in this amazing day of fun.  Please open the attached invitation for details of this magical day on July 9th.  Debbie, Keely, and myself would love for you to join us in supporting this great cause.  I would like to give a huge thank you to Debbie and Keely for everything they are doing to make this day perfect!

As always, you are all in our hearts and prayers.  So many of you have made Nathan your devotion and daily prayer.  There is not a doubt in my mind that God is listening and hearing us ask for help and guidance.  He is giving us the peace of mind we need during periods when it would be easy to overreact or lose trust.  Thank you for walking this path with our family.  We need you and we appreciate you all.

Happy Summer!!

Mike, Beth, Nathan, and Samuel

Nathan in Hilton Head, SC April 2016

Our favorite spot in the hospital, the 6th floor patio overlooking the city

Nathan's 1st T-Ball Game

His favorite superhero shirt and mask he made to help him get through the day

Happy Spring Everyone! 

As I am writing this update, the back door is open and I hear the chimes and wind blowing.  It feels like spring and a time of new beginnings.  For Nathan, the past three months have given him many opportunities for new beginnings.  He has truly grown into a little person with independent thoughts, a wonderful imagination, and is full of love and compassion.  He is a people person like his parents and Samuel is following in his footsteps.  

Nathan’s last MRI was on March 7th, almost a month ago.  I usually write these updates shortly after the MRI, but this email is late given the variety of decisions we have been faced with over the past few weeks.  We were very pleased to hear that Nathan’s MRI looked stable from his scan in December.  Unfortunately, Nathan is telling us that something is going on that we are not able to see on the scan.  Due to the tumor being deep within the brain stem and the effect of his current chemotherapy on imaging, we are unable to trust the scan to give us an accurate picture.  This is extremely frustrating.  We want to have concrete information to guide our decisions, but our current circumstance does not give us that opportunity.  We have to trust our instincts as parents to know Nathan so well that we can pick up any subtle changes we see.  Every day I have to chart 14 different categories from sleep and voice quality to the number of hiccups and times he coughs while drinking in order to try to identify trends that would give us information of progression or decline.  That is the only thing the doctors have to make some very serious decisions about how to treat him.  The hardest part is that Nathan is a child who has good days and bad days just like every other four year old.  We are grateful to the wonderful therapists and teachers that work with him to help us sort through a very intricate process.  Nathan has also developed some complications with his kidney’s due to the toxicity of Avastin.  Even if Nathan’s symptoms were stable and Avastin was working, we would still have to stop due to his kidney levels.  This was the first time we had to consider long term effects on his body when choosing to stay on a treatment.  We are starting to learn that after the body has been given so many heavy doses of medication, there is a true art to finding the right balance of push and pull.  We are confident that our oncologist is a master of that art. 

After Nathan’s MRI, we went to Boston to see his neuro oncology team.  We were hopeful all of his doctors would let Nathan stay on Avastin for a few more treatments to see how his symptoms would develop over the next few months.  They have a very aggressive approach to treating tumors like Nathan’s because they know it does not take much for long term function to be lost.  They always follow the philosophy that the goal is for Nathan to be symptom free.  Any time he has symptoms, his body is giving them the information they need to treat the tumor.  In that appointment, we were reminded how serious the placement of Nathan’s tumor is.  I found myself looking at the doctor, but unable to hear what he was saying at times because I didn’t want to believe it.   I have been blessed to know many great teachers and he is by far one of the greatest educators I have ever known.  I know the tone that good teachers use when they want you to understand what has to happen to be successful.  Dr. Kieran had that tone when he for the first time said, “We cannot afford to wait and watch.  The functions that Nathan’s tumor effects cannot afford to be compromised.”  My eyes filled with tears and my heart dropped,  but I heard his words and trusted him.  Those words have stuck with me and helped me to accept that it is time we have to change to yet another therapy.

The tendencies of a majority of low grade gliomas tumors like Nathan’s are to go through different waves of treatment and stable periods until they eventually stabilize on their own anywhere from age 11-22.  What makes Nathan’s case so risky is that he was diagnosed at 8 months of age and his current tumor is inoperable.  We have a lot of time to buy and there is nothing that can be done to remove what is remaining.  A majority of children find a time of stability off therapy with their first or second treatment.  Nathan is four and will now be on his sixth treatment.  We are now moving into drugs that are not standard treatments for low grade glioma tumors.  We have had to consider very young clinical trials where toxicity profiles are unknown and traveling for treatments would be necessary, off label uses of FDA approved drugs, and chemotherapies that have long term risks that we would not like to take.  

We have had to learn a significant amount about genetics and how it effects the treatment of Nathan’s tumor.  We have now entered the world of targeted genetic therapies.  The fact that my brother is a leader in the field of genetics and runs a lab for Human Genetics Research in Boston is absolutely amazing.  He has been able to educate us on complicated science that the average music teacher and CPA parent do not understand. After a great deal of research and many conversations with his doctors, we have decided to go with a drug called Everolimus.  It is one of the first drugs approved for children that is targeting a specific genetic mutation.  It was developed as an anti rejection medication and for children with tuberous sclerosis complex.  We have had Nathan’s tumor genetically mapped and know that he has the exact mutation the drug is targeting.  The BRAF pathway has been a focus of cancer treatment for many years.  The mutation associated with melanoma is the same mutation found in many low grade glioma tumors.  Therefore, the drugs designed to inhibit this mutation in melanoma may be active against Nathan’s tumor.  Unlike other younger targeted therapies that are available right now, we know this drug has over 20 years of toxicity results and data in children.  In patients with Nathan’s mutation, it has a high success rate for either shrinkage or stability.  We believe in the science of these therapies and know they have potential to make significant changes in a tumor like Nathan’s.  Like any therapy, it does not come without risk and side effects, but it is the safest option we have. We feel very confident that this is the path for Nathan right now.  The decision did not come without many sleepless nights and deep prayer.  My brother said to me a few weeks ago, “You have already made the decision, now you just have to understand why you made it.”  He was right. 

The last thing a parent wants to hear is that a treatment for your child is no longer working and you have to explore other options.  Although we wish we could stay on course, we feel truly blessed that Avastin worked so well for Nathan for almost two years.  That is a significant amount of time on one drug. He has had time to learn how to drink regular liquids for the first time in his life, he has learned how to ride a bike, he has learned how to read and write, he has learned how to jump, climb, and swing.  Nathan is able to play soccer with his peers, keep up with all the other kids in Tae Kwon Do, and will start T-Ball this week. These are all things that a parent who receives the diagnosis of a brain tumor in their 8 month old baby do not take for granted.  These are things Nathan has worked hard to learn and he fights hard every day to be just like everyone else.  We will not stop helping Nathan until we feel he has every tool he needs to be as strong as his body allows him to be. 

Nathan continues to go to therapy three times a week to gain strength and endurance for his weaknesses.  He is extremely aware of what goes on around him and I know he senses something is different right now.  I know that all of the anxiety, worries, and fears have to go into a little box that we cannot open because it is our job to make Nathan feel safe.  He wants to watch everything that goes on from placing the IV’s to having his feeding tube changed last week.  He does not take his eyes off of the people working with him.  He has learned to breathe through difficult situations and be brave through procedure after procedure.  He is asking more and more questions that I often don’t know how to answer.  I have met some amazing parents who are going through similar situations.  They have helped me to find the right words at the right time so Nathan understands his situation without being fearful of what goes on.  Nathan and Samuel are best buddies.  They find great comfort in each other.  God knew what he was doing when he gave us these two little angels.  They just play and hug all day long. They make this path one that I would never trade because it makes us who we are.  The four of us depend on each other for comfort and strength.  We are all in our happy place when we are together.  We know that life is precious and time as a family will always be a priority and something we cherish most in our lives.

The past month has probably been one of the hardest months for us since Nathan was diagnosed.  There were many realities of his prognosis and long term treatment path that we have had to face all over again.  There have been memories and realities I wish I didn't have to revisit.  After I spoke to the doctor tonight, I felt great peace that we are on the right path.  Spring is a perfect time to accept this new beginning and give every ounce of energy we have to making it as positive as we can.  It is a chance to start the healing process again.  It is a chance for Nathan to be one step closer to stability and a cure.  It is a chance for us to enjoy our precious Nathan during every beautiful day that God gives us.  

Thank you all for being part of our lives.  Your encouraging words are what make the hard days easier and the good days worth celebrating.  We love you and thank you for the commitment you have made to helping our family through this challenging path. God knows we cannot do it alone, so he has given us all of you. 

Much love,

Mike, Beth, Nathan, and Samuel 

Samuel and Nathan in their matching shirts. They will help each other to be strong and keep fighting!

One happy Easter boy!

Another great trip to Boston. He loves his new Boston snoopy hat.

Just get a few last minute hugs before school

Happy as can be in his new swing set

Riding his first big boy bike for the first time

Good evening!

Winter is here and the Holidays have arrived. Every morning Nathan runs downstairs to see where his elf, Sydney Crosby, has landed.  He then loves to FaceTime his family to see where their elves have landed.  It is the highlight of his day.  This year has been especially exciting because our newest family member, Meredith, has been sharing her Hanukkah traditions with us every day.  It has been such a wonderful addition to this already magical time of year.

The last update I sent was in August.  At that time, Nathan’s neurological symptoms were regressing and he had to start back on an every two week chemotherapy regimen.  Since then, Nathan has received 9 rounds of chemo and he has again stabilized.  Neurologically, he is doing very well and the MRI last week showed exactly what we are seeing.  The tumor is the same size as it was at the end of September.  There actually has not been any major changes in tumor size since the fall of last year, but Nathan’s symptoms often change before we will see anything on a scan which guides the need for treatment.  

One of the biggest accomplishments over the past few weeks has been that Nathan is starting to trial small amounts of regular water.  Due to his compromised swallow and paralyzed left vocal cord, all of Nathan’s liquids are thickened and we use his feeding tube for 90% of his hydration.  This is the first time Nathan has ever been able to drink thin liquids without immediate signs of aspiration.  He has also made great strides with his physical and occupational therapies. He is starting to do things independently and is using the left side of his body at a more age appropriate level.  His voice has also gotten significantly stronger.  He is able to find high and low sounds for the first time and keep up with all of my crazy songs that I sing all day long.  He is in a good place right now and we could not be happier.  The biggest challenge is finding a way to keep him in this positive place with the least amount of toxicity.   

At this point, we will start to space his chemotherapy treatments to once a month and hope that his symptoms remain stable.  After we stopped this chemotherapy in April, he started to regress within 6 weeks. Unfortunately, we are starting to see some side effects from the chemo that we hope do not effect his ability to remain on this treatment. He has developed neuropathy/joint stiffness in his ankles and feet, a limp, and high blood pressure.  It breaks our hearts to see our little four year old get out of bed every morning and struggle to walk for the first hour of the day. Although these complications add to the complexity of his care, we do appreciate the bigger picture of stable scans and overall neurological health. We 100% believe that Nathan’s neuro oncologist in Boston puts the preservation of Nathan’s body and development before any other decision.  He looks at the comprehensive picture and does not ignore even the smallest of details. 

One of the biggest challenges of managing a child with a brain tumor is that it truly effects Nathan’s entire body.  During our several appointments in Boston yesterday we addressed concerns over facial nerve stimulation, vocal cord function, swallow function, inter cranial pressure, pathway inhibitors and their effects on genetic mutations for Nathan’s tumor type, neuropathy, blood pressure, the list goes on and on.  We often leave appoints extremely overwhelmed because so much of the terminology is new to us.  We are an accountant and a musician and now we are expected to make life changing decisions on very complicated medical issues.  We have to accept that so much of this is out of our control.  There are not always answers to important questions.  We have to be patient, not panic, and always educate ourselves to the best of our ability to make sure Nathan is safe during these fluctuating times. Our own insecurities and worries must always take a back seat so we can see through a focused lens and help Nathan.  My final prayer every night is asking God to help Mike and I make the right decisions for his medical care because it the biggest responsibility we will ever have. Recently I have had more moments of wishing our days of hospitals, therapies, and medical management were less.  I only let my mind go there for a minute and quickly realize that God trusted us to do this job and we will do whatever it takes to make sure Nathan gets what he needs. 

Last year, Nathan was nominated to be a Make-A-Wish child.  We have been working with this wonderful organization throughout the past year to help Nathan fulfill his wish.  We all know the name Make-A-Wish, but through this process we have learned what this absolutely incredible group of people do for kids like Nathan and we could not be more impressed. On November 27th, he received his wish to have a truck play set.  He still loves his trucks more than anything in the world and wanted a truck stop where he could serve them food and the truckers could get out and play.  Well, they fulfilled his wish far beyond our wildest dreams.  I think one of the best parts for Nathan was watching the set be built in the yard.  He did not leave their side as they bolted on each piece. This amazing weather has allowed Nathan and Samuel to enjoy the play set every day.  It brings us such joy to see him being a kid, climbing, jumping, and swinging just like he should be.  We are so appreciative to Make-A-Wish and the smiles they bring to kids like Nathan.

Every time I look out our window and see the play set it reminds me what is achievable when you fully commit to a goal.  Nathan spends 3-4 days a week in therapies to make his body as strong as it can possibly be.  Last week he received his 75th round of chemotherapy and more IV’s than I want to remember. He never once complains or questions what is asked of him.  He does every single thing the doctors tell him to do and therapists ask him to practice. When the countdown happened and the kids all went on the play set when it was finished I did not feel bad that Nathan was a Make-A-Wish child, I felt peace that he was healthy enough to enjoy this incredible gift. 

The Holidays are here and we all have so much to be grateful for this year.  It is always humbling to spend time at Children’s Hospital, or as Nathan calls it, “my hospital.”  There are so many sick children that will spend their Christmas in a hospital bed instead of in their homes.  We are grateful for the perspective we have been given and pray that we never take even one day for granted. 

You have all followed this journey and supported us every step of the way.  Each month brings a new challenge, but your constant encouraging words give us the strength and faith to do our jobs as Nathan’s parents to the best of our ability.

We wish each of you a very blessed Christmas, a happy Hanukkah, and a new year filled with health and love. 

Love,

Mike, Beth, Nathan, and Samuel

Nathan and Samuel on his Wish Day. Samuel is Nathan's best friend and number 1 supporter!

Getting ready for his MRI on December 2nd

Enjoying his favorite s'mores donut from Peace, Love, and Little Donuts while watching his swing set go up. 

August 3, 2015

Nathan received his first Avastin treatment of the second round.  We thought he may have trouble getting back into the routine because he has been off for over three months, but he handled things way better than mom.  They were able to place the IV quickly and everything with the infusion went as smooth as possible.  He will receive treatments every two weeks until his symptoms stabilize.  We will then begin to space them to every 3, 4, 5, and 6 weeks as long as his symptoms are manageable.

Avastin Infusion

Lego crafts on the 6th floor!

Nathan was so excited to be able to spend the day with Pap...even if it was at the hospital.