March 17, 2020

Hello from the Leckey House!

Wow, all of our lives have been drastically changed in the past 7 days!  I started to write an update last Thursday when we returned from Boston, but then we went into task mode of adjusting to the new lifestyle that each of us is trying to understand.  We now hear the words “new normal” every time we turn on the tv.  I have used this term many times in our updates as we have had to adjust to new medical plans for Nathan over the past eight years.  Unfortunately, we have sat through countless appointments were doctors give us news we don’t want to hear and we have to learn all new drugs, administrations, appointment schedules, side effects, etc…Well, this time we get to adjust to a positive “new normal” for Nathan for the next few months.  Although our country is going through a time that I can not even begin to put into words, we are trying to find joy in our days and appreciate the gift of positive news and medical freedom for Nathan.

I have been writing these updates on Nathan since he was 6 months old.  Over the past several months I was hesitant to continue writing about Nathan because he is old enough to understand what is going on and I want to respect his privacy.  He has his own deep fears, realizations, and questions about his diagnosis.  He understands his diagnosis is serious and will always require medical care. Before bed last week he said to Mike and I, “It is my life mission to get rid of this brain tumor.” We just held him tight and promised him our life commitment is to always find him the best doctors there are to take care of him and we all share that same mission. 

A few weeks ago he decided to google his name and his blog came up.  He started reading it and said, “Mom, did you know I have my very own webpage. This is pretty cool.”  He then started asking a million questions about how he can add to the blog and he started taking over editing pictures and entries. I told him there are many people who follow his story and are constantly praying for him and they want to make sure he is ok.  Mike and I decided yesterday that if Nathan wants to continue to share his story then he is old enough to tell it in his own words.  

Today, Nathan wrote his first update:

Two years ago I started on a clinical trial called MEK 162 in Boston.  I have traveled there almost every month since May 2018. When I go to Boston I see my doctors, go to a lot of appointments, and best of all see my cousins. I like when my brother Samuel comes along. I have taken my chemo twice a day for two years and last week I was able to take my last dose of medicine because the trial has ended.  I had an MRI on March 11th and it said I had a good scan.  When the doctors told me I felt really happy.  I am excited to be running and doing everything I was able to do before I started my medicine just like my two supportive brothers, Samuel and Sean.  It looks like I will have a lot of time to do what I want because I don’t have to go to school for awhile.  I have had fun being able to take walks for the first time in a long time, play outside, build legos, and play with my brothers. Thank you for taking your time to care about me.  I feel amazing!

Now, I have to get back to eating my favorite snack, cheetos, and reading Harry Potter! 

Love, 

Nathan

As we all continue to adjust to the “new normal” of our country and manage our fears, worries, and emotions please remember that you are not alone.  Our family has gone through many ups and downs over the years and we always get through it because we feel loved and supported by all of you.  We have said it many times, it takes a village to raise a child.  You are Nathan’s village and we are so grateful he knows your love.  

We will continue to pray for all of you!

Love,

Mike, Beth, Nathan, Samuel, and Sean

www.nathanleckey.blogspot.com

In the healing garden at Dana Farber Cancer Institute

Final picture after he was done with his tests. 

On our first walk in the neighborhood after stopping treatments. 

April 18, 2019

Hello to our dear family and friends!  

We wanted to give you an update on how things are going with Nathan.  I thought holy week and the beginning of spring was the perfect time to give you an update and thank you for your support.  May 3rd is the one year mark of starting the MEK inhibitor clinical trial.  The last update I gave you was in October when we first learned that Nathan may be having a positive response to the treatment.  Since then, there have been quite a few challenging months and scans that were not as promising as we thought they would be.  Through long conversations and evaluating all the options on the table, we decided to continue on the trial.  Two weeks ago, Nathan had his one year scan and the results were very promising.  The tumor is measuring stable, but the overall appearance and size seems to be smaller since starting the trial one year ago. 

As we have learned in the past, it is very difficult to give a conclusive and consistent assessment of Nathan’s tumor response to any given chemotherapy.  The imaging is not always consistent and clear enough in his location so many of the reports are left up to interpretation of the radiologist and other physicians on his team.   We have many eyes on Nathan’s case and we always feel that we have enough information to make the best decision possible at the time.  His oncologist put it best, “This drug is not a home run for Nathan, but it is very positive news that gives us more time to reevaluate in three months.”   We are extremely grateful for any baby steps in a positive direction.  Nathan has exhausted a lot of therapies for a little guy, so it is important for him to be able to remain on the same drug for a longer period of time.  His tumor is stubborn and in a high risk location which makes getting an effective nonsurgical treatment challenging. 

Due to the promising scan this month, he is eligible to continue on the chemo for the second phase of the trial.  If the tumor continues to stabilize, we will consider coming off therapy at some point to see what it does. Nathan will then be classified as a patient who had a positive response to MEK inhibitors.  This opens doors for him to be entered in other trials, stop and start commercially available options of MEK inhibitors, and continue to explore other rapidly developing drug options that attack this pathway. Our every prayer over the next three months is that the tumor continues to remain stable so none of these doors close for Nathan.  

Unfortunately, this chemotherapy has come with significant side effects and challenges for Nathan.  The way he navigates his days has had to change considerably, but as always he finds a way to push through and do his best no matter what. He has done a remarkable job of adjusting the way he moves, plays, fights through extreme fatigue, and deals with the physical and emotional challenges of this therapy.  In addition to all of this he has traveled to Boston 14 times in the past year and has had three hospital admissions in just the past three months.  His happy place is at Wexford Elementary school. He is so motivated to fight through the side effects and get himself to school every possible day he can. During his last admission he just kept telling anyone that walked in the room that he needs to get out before his school play on Thursday.  I hope this never changes!!

In December, our family decided to make a significant change in our lives to help Nathan and the rest of the family.  We were not looking, but we found a new construction ranch home that was still in Pine Richland and Wexford Elementary borders.  We moved quickly on this and put the house for sale.  We moved into our new home on March 21st and it has been amazing for all of us.  It is one floor so we can all be together as a family and not have to worry about all the challenging obstacles in Nathan’s way.  Adding a move to this busy year was certainly not what we intended to tackle, but we are all so happy here. We truly believe God put us right where we are supposed to be at this time in our lives.  Our family and friends have been amazing to help us quickly pack boxes, get the house ready to sell, watch the kids, and do all the little jobs that come with getting us from point A to point B.  We were definitely not ready to move, but we are slowly getting settled and enjoying this fresh start. 

As we approached Nathan’s last scan I just kept asking God to give us a chance to fight this tumor.  It doesn’t have to be the easy road, just let us keep going.  He answered our prayers and now we will do everything necessary to help Nathan continue to be successful while taking this chemotherapy for hopefully another year.   We know he is always in your thoughts and prayers.  We know that if there is anything we need you will be there for us.  Thank you for continuing to walk by our side as we move forward. 

We wish you all a very blessed Easter and Happy Spring!!!  

Love,

Mike, Beth, Nathan, Samuel, and Sean

Our New Address:

310 Macintosh Drive

Mars, PA 16046

The day we closed on our new home!

First bus ride!

Saying goodbye to Lloydmont

Our final walk through in our old home

Nathan as Farmer Jones in the 1st grade play

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.