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.

August 2, 2015

Good evening,

I hope you are all enjoying the summer as much as we are.  After the rain in Pittsburgh finally stopped, we have enjoyed our time playing in the yard, riding bikes, and playing at the park. We have tried to make the most of every day that Nathan has been chemo free.  We waited almost three years to get a break, so we did not take it for granted.

Last week Nathan received the first MRI since he stopped chemotherapy on April 27th.  After each scan, we travel to Boston to meet with his team of doctors. There is a period of time that we spend gathering information and opinions from numerous physicians at Children’s Hospital of Pittsburgh and Dana Farber Cancer Institute in Boston. It is a complicated coordination of care with many different ideas on approaches to treatment.  Although it is confusing at times, we feel that Nathan has some of the greatest minds in the field working on his case.  We are confident that we are gathering as much information as possible before making a decision on how to best treat his tumor and symptoms.  Unfortunately, his case is not straight forward, predictable, or easy.  He is young and his response rate to standard chemotherapy has not been positive thus far. 

On April 27th Nathan finished his one year cycle of Avastin chemotherapy.  Making it to the one year mark is always a huge accomplishment.  Nathan’s neuro oncologist in Boston reminded us in April that we will hope for stability and even if it lasts a few months that is ok.  The overall MRI scan appears to be mostly stable at this point.  There are areas around the visible tumor that appear to be enhancing slightly from the last scan.  Based off of the scan alone, things look quite good.  Although, when treating Nathan’s type of tumor, his current symptoms out weigh any MRI images.  If he is symptomatic it is most likely because the nerves are being compressed in the brain stem and the symptoms are preceding the scan.  

Due to the placement of his tumor, many areas of his body can and are effected.  There are certain symptoms that we can wait and watch and there are others such as swallowing and breathing where there is no room for growth.  Unfortunately, those critical areas have declined since his last MRI.  We believe he is aspirating his own saliva which causes him to regularly cough, choke, and could possibly be the cause of his most recent symptom of breath holding. In addition, he is starting to have weakness on the left side of his face which causes other challenges such as drool, weakened ability to chew efficiently, and inability to swallow liquids safely.  I keep a detailed daily summary of each of Nathan’s symptoms and the frequency in which they occur.  This becomes the basis for many of the decisions on treatment. 

The doctors are not sure at this point if the symptoms are coming from inflammation that can happen after coming off of Avastin too quickly or there is true tumor growth.  Unfortunately, the only way to tell and protect any new growth at the same time is to start back on chemotherapy every other week.  Nathan will receive his first treatment tomorrow morning. 

This has been a long road for all of us and I would be lying if I didn’t say we are all tired.  It is hard to accept that we have hit yet another detour.  It is extremely difficult to watch certain symptoms decline and just sit back and watch.  As much as we want to pretend everything is ok, we know it is not and we know this is the path we have to take right now. One of the biggest challenges of managing pediatric brain tumors is making sure any one nerve is not compressed to the point where the damage can not be repaired.  We have to do everything we can to help Nathan’s swallow continue to strengthen.  

Our every hope and prayer at this point in time is that Nathan will receive two or three rounds of chemo and his symptoms will return to his baseline.  At that point, we can spread apart the frequency of the treatments and slowly ween off again.  We will trust Nathan’s doctors to use their many years of experience to manage any new tumor growth and control his symptoms. 

I have not told Nathan that he is going back on chemotherapy.  He has been so proud to tell people that he is chemo free.  After a long week of travel, tomorrow will be another one of those challenging days as a parent. I have to look at my little three year old and tell him we will be going to the hospital for his medicine and he has to start getting IV’s again.  I am sure he will have a thousand questions and will make the most of the situation like he always does.  I hate that I count on him to give me the strength to get through these difficult times. He really is my rock. His smile, his energy, and of course his laugh will make all of this manageable.  

I know you all pray for Nathan regularly.  I am confident God is hearing our prayers.  I ask him every night to help Nathan heal from the inside out and to help his body to fight this awful disease.  He is certainly not giving us the most direct route to a cure, but I know if we are patient and strong Nathan will get there.  We will all make sure he gets there because there is no other option.  

Thank you for all of your love and strength.  We have the most incredible support system in the world!

Much love,

Mike, Beth, Nathan, and Samuel

He just loves these Minions.  This is what happens when dad takes him to Target.

July 23, 2015

First follow up MRI after stopping chemo on April 27th.

4th of July with his best buddy!

April 30, 2015

Good evening!

Winter is finally over and spring has arrived!!  This is one of my favorite times of the year.  There is nothing better than seeing the grass turn green and the flowers start to bloom. It is a sign of new beginnings.  Nathan was hit with quite a few viruses and two rounds of pneumonia over the winter.  It is so nice to see him playing outside and running around with his trucks. I could watch him run around the back yard chasing a ball and pushing his trucks all day. He absolutely loves being outside. 

This has been an exhausting week in the Leckey house, but by far the greatest week we have had since Nathan was diagnosed three years ago.  He had an MRI on Monday and the tumor has remained stable since his last MRI in February!  He finished his one year cycle of Avastin and received his last dose of chemotherapy on Monday.  It has taken me four days to actually believe what I am saying…Nathan finally gets a break from chemotherapy.  In my update several months ago I wrote in capital letters what I had in my head for so long…THE TUMOR IS SHRINKING.  This update was another one that I have written in my head over and over and have never been able to write.  Now that it is true,  I think I will say it just one more time…NATHAN IS CHEMO FREE!  He was walking around all day today saying thumbs up to being chemo free mom!  Needless to say, I cried every time. 

He has received 66 rounds of chemotherapy and been under general anesthesia 23 times since he was diagnosed on June 2, 2012.  When I woke up this morning I had to say it out loud to actually believe myself.  Our little fighter has been going nonstop, never complaining, and now he finally gets what he deserves….a break!  Just like all of the beautiful flowers that are about to bloom, Nathan can finally grow and develop without battling the toxic chemotherapies his little body has had to endure for three years. We took lots of pictures of his last treatment and he must have gone through them ten times today.  He kept showing me the picture of the MRI I had on my phone and said, “Hey mom, that’s the inside of my brain. Did you know it is all better now?” Kids pick up on everything!

We traveled to Boston on Tuesday and met with his team of doctors yesterday. They gave us great reports and think Nathan is doing very well.  They believe his symptoms are stable and feel confident stoping therapy is the right decision.  He will receive his next MRI in three months.  Avastin is a complicated drug because it can change the image of the MRI.  It is often not clear exactly what the tumor is doing until you stop therapy and let the brain go back to its baseline.  His oncologist believes it will take about six months for the scan to give us true information.  It is critical that we monitor Nathan’s symptoms very closely as that will be a better sign of what the tumor is doing.  Once again, we were reminded that we have some of the greatest minds in the world working on Nathan’s case.  His oncologist in Boston is on the cutting edge of every medical development pertaining to pediatric brain tumors.  His lab has over 60 scientists working just on low grade glioma tumors which is Nathan’s tumor.  We fully trust them to manage this delicate time in Nathan’s care. During these three months off therapy Nathan will continue to receive weekly physical therapy, occupational therapy, and speech therapy.  Now is the time to push him because his body will be strong and accept the treatments.  He works hard for the therapists.  His work ethic is incredible for little guy…then the therapists leave and he gives mommy and daddy a run for our money just like a three year old should.

The past few days have been filled with smiles and hugs.  When I opened my eyes this morning I just looked up and said, “Thank you!” God is hearing each and every one of us and is answering our prayers.  You have helped our family through the darkest moments in our lives.  I remember in one of my first emails I used the phrase, it takes a village to raise a child.  You have been Nathan’s village who have faithfully stood by our side in prayer every step of the way.  God is hearing you all. We know he will protect our Nathan and give his body the strength it needs to continue fighting.  He knows Nathan’s body is tired and needs a break. He knows mom and dad need a break as well.  We do what we have to do and often times ignore the reality because it is just too hard to accept.  Today is not dark, it is not heavy, is it not hard. Today is a perfect day.  it is the first time in three years we feel peace.

Over the next three months Nathan will have a chance to enjoy the sun and play outside with the other children.  He will get to run in the ocean and play with his trucks.  Unfortunately, so many of the children we see every other week at the oncology clinic will not have that same opportunity.  Some of them may not make it through the summer.  That is the true reality of what we are surrounded by on a regular basis.  During this time off treatment, we will direct our prayers to those children who desperately need Nathan’s powerful village of prayers.  They need us.  

We know we still have a very long road ahead of us and Nathan’s journey to a cure is far from over, but today we celebrate this break.  We thank God for giving us the opportunity to feel this genuine peace and joy.

May God bless all of you.  Thank you for loving our Nathan and taking care of our family.  We will be forever grateful for all you have done for us.  Enjoy a relaxing summer!  If you have some time, come join us as we party in the sun chemo free!!!

Love,

Mike, Beth, Nathan, and Samuel

Nathan and Samuel waiting for his MRI

Thumbs up to being chemo free!

Happy Winter!!

Wow…will it ever come to an end?  Although it is beautiful to look at through the window, we are certainly ready to be running and playing outside.  It has been a long winter in the Leckey house.  Like everyone else, we were unable to escape the variety of illnesses that passed form one of us to the other. We are ready for spring! 

We are very excited because we are preparing for our first trip to meet Mickey in just 8 days!!  Nathan is beyond excited. We can not wait to see the look on his face when he meets Mickey for the first time.  He has loved Mickey since he was little, so this will be an amazing experience for all of us.  After we leave Disney we are all headed to Boca Raton to celebrate the wedding of Mike’s bother, Bill, and his lovely wife to be, Meredith. I would say March is going to be one memorable month!

Nathan’s last MRI was on February 9^th.  I did not have a chance to write an update directly following the MRI, but I know so many of you loyally pray for him and want to know how he is doing.  We are so thankful to have received the news that the latest scan showed stability of the tumor again.  This is now the third scan where the tumor has remained stable.  The best news of all is that if his next scan on April 27^th remains stable, Nathan will come off all chemotherapy for the first time since September 10, 2012.  Putting this into words is the first time I have let myself really believe that Nathan may finally get a break from these heavy medications.  We have accepted this is the only way, but there is nothing easy about watching these toxic drugs go into your little boy every two weeks.  We have had to face so many negative realities that it is often difficult to let our guards down in fear of being disappointed.  We are counting the days until they say we all get a break from chemo! It is right around the corner.

Unfortunately, children who have received Avastin for one year often have a higher regression rate than other standard chemotherapies.  It is similar to a blood pressure medication.  As long as you take your medication regularly everything is fine.  The moment you stop, everything can go right back to where it was.   It is our ever hope that Nathan falls into the minority and is able to achieve stability and stay off all medications for a period of time.

Although the tumor appears to be smaller than when we started this treatment last May, many of his symptoms do not follow the same pattern.  The last few months have been spent in countless hours of therapy and seeing new specialist to help manage symptoms from the tumor.  In December, we learned that Nathan’s left vocal cord has stopped working.  This not only impacts his vocal quality, but it is the last protection the body has from food and liquid entering the lungs.  Managing a safe swallow has been a challenge for Nathan since birth, but now we know the cord has completely stopped working.  He will have to continue to work hard with a variety speech and occupational therapist to retrain the functioning muscles to do the job of the ones that are not working.  He continues to show left sided weakness in his leg, hand, and neck.  Winter has been difficult because of the constant illnesses. The common cold makes Nathan’s symptoms extremely difficult to manage because the increase in secretions make it harder for him to swallow, control his drool, and breath easily.  He certainly has his good days and bad days.  Today he felt strong and active.  We cherish these days and do not take them for granted.  The constant chemotherapy is starting to take a toll on Nathan.  We hope and pray that when he comes off therapy in a few months he will gain back some of his lost strength.

We continue to travel to Boston every two to three months to see a team of world-class physicians. They are true experts in their field.  We always leave the appointments feeling like our Nathan his in the hands of the best.  There is nothing easy about managing his care in two different places.  His care is now coordinated between ten physicians and five therapist.  We often become overwhelmed by the amount of time we have to invest in making sure we have taken care of everything and notified everyone involved.  Although the amount of communication, travel, and paper work involved is like having a full time job, we would not do it any other way.  We know that we are fortunate to have found so many great doctors and we will continue to do everything necessary to make sure Nathan gets what he needs to be one step closer to a cure. 

We are so grateful for the continued stable scans.  Although Nathan never complains, he needs a break from all the medications, physically and emotionally. He is now able to express his fears and wants to know why.  He is learning to not trust unfamiliar faces at the hospital.  He just looks at me and says, “What are they going to do to me mom?” He has had more IV placements that I count.  He knows the routines, he knows what he has to do, and he knows that although it is painful he has to keep being brave.  He looks to us for comfort and we know that is the only thing we can give him.  We give Nathan every ounce of patience and love we have. It is not easy at times, but we pray that God continues to give us strength to support our little fighter. 

You are all there to love and support us every step of the way.  We could never get through this path that has been chosen for us without you.  As you all continue to pray for Nathan and our family, we continue to pray for you.  Nathan’s next scan on April 27^th is a big one.  We hope Nathan gets his much deserved break.

Love to all of you!

Mike, Beth, Nathan, and Samuel