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

December 1, 2014

Happy Holiday Season!

It has been a busy couple of months here at the Leckey house. It is so hard to believe we are in the season of winter Holidays already.  We are slowly coming out of the “new baby fog” and entering the reality that we are a busy family of four.  Samuel is a very sweet and calm little boy.  He has completely changed Nathan’s world.  Nathan adores his every move and doesn’t want to go anywhere without him.  It warms our hearts to hear him talk to Samuel in a soft gentle voice and give him kisses on his head. We love seeing them together and can’t wait to watch them become buddies. 

Nathan had his 17^th MRI yesterday.  The scan showed the tumor to be stable from his last scan two months ago.  He has been receiving a chemotherapy drug called Avastin every two weeks for the past 7 months.  This is the longest period of time Nathan has remained on one therapy since he was diagnosed.  In the pediatric chemotherapy world, a drug is named successful when a child stays on the same drug for usually a year and then is able to come off the drug and the tumor remains stable off therapy. 

We have learned the key to treating a low-grade glioma without radiation is to find the magic drug that will stabilize the tumor.  Over 50% of tumors like Nathan’s stabilize on the first therapy used.  He is now on the fifth therapy in 2 ½ years.  Nathan’s tumor is rare and has been challenging to treat.  Although we would give anything to see the wwhite mass on the MRI image just disappear, we have accepted that is not a reality at this point.  We have most likely seen the maximum effects of his current chemotherapy and now we wait and pray it continues to stabilize on and off therapy. Unfortunately, some of Nathan’s symptoms have regressed and the doctor believes this may be Nathan’s new baseline.  He has significant drool, chronic hiccups, weakness in his neck which causes a tilt, left sided fine motor weakness, compromised swallow, and weakened vocal cords.  He is currently receiving four therapies a week to address these weaknesses and try to overcome the damage to the nerves.  Nathan will continue to receive Avastin infusions at the hospital every two weeks for as long as his body tolerates the drug. The goal is to make it to one year.  

After a long day of testing, Nathan received his 55^th round of chemotherapy yesterday.  It has been a long road for our little boy with many days spent at the hospital and too many pokes to count.  The scary part is that in Nathan’s world this is what he knows to be normal. Nathan has always been very observant and aware of every move someone makes at the hospital. He knows what and who he can trust and does unbelievably in that safe environment.  Yesterday was the exception. The moment the elevator opened and he realized he wasn’t doing his normal 9^th floor routine, a fear set in that broke our hearts.  He said, “I don’t want to go here today mommy.  I want to go see my nurse Ms. Patty and get an IV.  I don’t want to lay down and put something on my face.”  His normal innocent play at the kitchen while he waits was now spent talking through how he is going to sleep with the special mask. At the end of our conversation he hugged me and said, “I will be brave mommy.”  I couldn’t help but cry and do everything I could to take his fears away.  Although I said to him it would go super fast, I know he will have to go through this over and over again.  He was so scared and I had to just watch it happen.

Nathan knew from the moment he woke up yesterday that something was different.  He said, “Are we going to the hospital today mommy?  Am I going to get a shot?” The hardest part of this whole situation is trying to feel normal in the middle of a storm that has changed who we are and how we think.  Mike and I took the boys to Phipps on Sunday evening to enjoy the holiday flowers and light show.  For a few hours, we were able to forget what we had to do the next day and could feel a sense of joy that is often difficult to find.  Although there is not a day that goes by that we don’t want to ask, “why us” we stop ourselves because we will never know why.  We will never understand why there are families this Christmas who will lose their children to this horrible disease.  Our very dear friend, Debbie, wrote us a poem about a year ago that reminded us that God chose us for this path and we have to be the parents he wants us to be.  We have to teach Nathan to be strong and brave through our example.  We have been given the gift of a child who knows strength beyond our comprehension and it is our job to guide him. Little does Nathan know he teaches us first and then we model after him to give him everything he needs to fight and be brave.  

We have gotten to know so many special children at the hospital.  This Thanksgiving and Holiday is different for us.  Our normal life involves many many hours at a pediatric cancer clinic, which makes all the stresses people feel over decorating and shopping very trivial.  This Christmas is a time to reflect on the blessings we are given and watching the magic of Christmas through a child’s eyes. This holiday season we are beyond grateful for all of you and the strength you give us every day.  We are in the midst of this journey and only God knows how it will end.  We have to trust him. Your words of encouragement and constant prayers are what keep us going.  I have said it before and I will say it again, you are our village that helps us raise Nathan and get him through this.  From the bottom of our hearts, thank you!

We wish you all a very Merry Christmas and healthy new year!  Every night we pray for all of you and the gift you are to our family.

Love,

Mike, Beth, Nathan, and Samuel

MRI #17

General Anesthesia #21

We have come a long way!

Merry Christmas 2014

August 4, 2014

Good Evening!

I hope you are all enjoying a wonderful summer of relaxation, vacations, and beautiful weather.  We have taken full advantage of each day this summer.  We have tried to do something fun in Pittsburgh every week.  Nathan now thinks every day should be action packed.  The first words out of Nathan’s mouth in the morning are now, “Where are we going today mom?”  I know life is going to come to a pause in the beginning of October when we welcome Nathan’s baby brother to the world, so we are enjoying being out and about while we can.

The last update I wrote was after Nathan’s MRI on May 12^th, three months ago.  This was the first time in a year that we went more than 6 weeks without Nathan going under general anesthesia for an MRI. I have written this particular update in my head many many times, but I was never able to actually write the words. Nathan has been on chemotherapy for two years.  Today was the first time the doctors looked into our eyes, smiled, and said, “The scan looks significantly better than three months ago. There is a dramatic positive response to the treatment.”  So now I can write what Mike and I have dreamed of since Nathan was diagnosed…THE TUMOR IS SHRINKING!!  Why not write it just one more time…THE TUMOR IS SHRINKING!  When they usually show us the scan it is like seeing a horror movie over and over.  To see a large tumor in your baby’s brain is an image I would not wish on anyone.  Today, I actually asked to take a picture of it on my phone because it was the most exciting picture I have seen in two years.

Nathan stopped the vaccine trial study in May and we started a chemotherapy called Avastin.  We know this is a drug that kids can not stay on for long periods of time, but it has great potential in some cases. Nathan seems to be having the best possible response for this chemo. For the past three months Nathan has had to have IV’s placed every two weeks to receive his chemo treatments.  The doctors thought this would be too hard on Nathan to get IV’s every other week, but he has truly stepped up to the challenge.  He and Ms. Michelle, his IV nurse, have their little routine and he walks her through the process step by step.  He is far braver than I am and says to me, “I don’t need to look away.” After she places the IV, he looks at her and calmly says, “Thank you Ms. Michelle for giving me an IV today.” I don’t know where he finds his courage and strength to deal with all of this, but he does it so well and never complains.  He now knows that when we make the turn by Console Energy Center that we are going to the hospital.  He gets it…he gets it all and never complains. 

Although Nathan is doing extremely well, the past several months have been some of the most challenging months of our lives.  Nathan’s neuro oncologist resigned shortly after Nathan’s last MRI.  Unfortunately, she was the only neuro oncologist in western Pennsylvania.  At a very critical point in Nathan’s care, we were left without a specialist. We have had to make some very difficult decisions on how best to care for Nathan.  After many months of research and traveling, we have decided to move Nathan’s primary care to Dana Farber Cancer Institute in Boston.  This decision did not come lightly, but after meeting the doctors there we knew what we had to do.  The chief of neuro oncology at Dana Farber will now guide Nathan’s care with a level of experience and expertise that we believe is the best possible care we can get for Nathan.  His case is complex and needs a team of experienced physicians who are able to guide his care with the most current research and years of successful treatment of Glioma tumors.  We have a team of doctors in Pittsburgh who will collaborate with the team in Boston to help manage Nathan’s case here and administer all of his treatments.  We will travel to Boston tomorrow to have his team there review the MRI and guide his care.  We are not sure how often we will have to travel back and forth, hopefully only every 2 to 3 months.   When we made the decision on who the best doctor was to lead Nathan’s case, we also made the decision to do whatever it takes to get the best care possible for him.  If a permanent move is necessary, then that is what we will do to make sure we give Nathan every chance we can for a cure.  For now, we are grateful for each day we can stay in Pittsburgh.

As we prepare for the arrival of our new baby boy, we are reminded where our journey began with Nathan.  No one can prepare you for what we have had to face over the past three years.  Unfortunately, there is nothing normal about your two year old knowing the words “tourniquet” or “IV”. He now gets so excited that we have to take his blood pressure every day.  He has had to grow up way too fast, but at the same time he has made us stop and enjoy the simple moments of life.  We have been given a gift to see life a little differently.  It is days like today where God gives our son a gift that each and every one of us has prayed for and imagined, but never been able to experience, that make the other days a little easier.  

We know every day and every scan will not be like today, but thank you God for letting us know what this feels like.  Nathan is our most precious gift and today you gave us hope and peace. Nathan’s newest phrase is, “What the heck is going on here?”  Although very funny, I often find myself looking up and saying, “What the heck IS going on here?” Today, I don’t ask why or how…I just say Thank You! 

We know Nathan’s prayer chain is strong and you never forget our family in your daily thoughts.  You never give up and you keep us strong.  We love you all and thank you from the bottom of our hearts.

Love,

Mike, Beth, and Nathan

Summer fun at Phipps!

May 19, 2014

Nathan received his first round of Avastin today.  He was a total champ if I must say.  One of the biggest obstacles was that he had get an IV to get the chemo.  We practiced with his doctors kit all weekend so he knew what to expect.  He likes to look for veins on mom and dad and use his special light.  We always have to get a mickey band aid at the end. He was anxious with everything new that was happening and kept saying, "Not for me," but he did really well.  They were able to place the IV fairly quickly which helped.  He also wore his IV sock so he didn't have to look at it.  Nathan just knows when he has to be patient and adjust.  The infusion took about 2 1/2 hours and Nathan was a total angel.  He sat and ate his lunch, played his puzzles with pap, colored, and watched his iPad.  He watches every little move the nurses make, but takes it all in and once he knows he safe he says, "thank you" to the nurses.  I was really proud of my little man today.  He was much stronger than his mommy!  We hope and pray we are able to continue getting veins easily and we can avoid the PICC line which would be very limiting for Nathan.

Nathan is weak right now and his symptoms are worse than we have seen in a very long time.  Nathan needs help and needs to get better.  We are hopeful that this chemo will help Nathan and do so quickly.  He is fighting through the side effects and working hard to be a happy little boy!

Thank you for your constant thoughts and prayers.  As always, you helped us get through a difficult week.

Nathan's special Steeler's sock to cover his IV

First infusion of Avastin.  Nathan did great!