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!

May 12, 2014

Good Evening,

 

I hope this email finds you well.  It is wonderful to see the green grass and blooming trees of spring.  It has been so nice to see Nathan enjoying being outside and running around like a crazy little 2 year old boy.  Nathan and I even went to Boston to visit my brother and his family.  It was so nice to be in a wonderful city with his cousins and explore museums and parks like a normal healthy little boy should.

Today Nathan had another follow up MRI to monitor his progress on the vaccine trial.  His last scan on April 10th showed questionable enhancement in an area deep within the brainstem. It is a critical part of the brain that controls breathing and swallowing.  After a break from the vaccine combined with several weeks of steroids, the hope was that we would see a change on the scan that would give us an indication that the vaccine was having a positive effect on Nathan's tumor.

The scan today showed the tumor to be stable from 5 weeks ago.  In the past, we would be ok with stability, but unfortunately not with this scan and this point in the vaccine treatment.  There is not enough concrete information to let us proceed on the vaccine without taking a significant risk of doing damage that is nonreversible.  As the doctor said today, a little growth could mean surgery, a shunt, use of early radiation, increased difficulty swallowing and breathing, and increased left-sided weakness.  These are not risks that are safe to take.

Every ounce of us wanted this vaccine to work because it has such great promise.  So many of you have supported not only Nathan's participation in this trial, but every child who has been enrolled.  Your generous donations over the past two years helped Nathan's Fund that directly supports the vaccine trial reach over $54,000 this month.  The vaccine gave Nathan almost 8 months off chemotherapy. We are hopeful that the vaccine effect will have a positive impact on his next course of treatment as they have seen with other vaccine patients.  We are still unsure if the vaccine worked for Nathan.  Only time and continued research will tell. 

After 7 hours of waiting, getting an MRI, and recovering, we spent over an hour with three physicians and two nurses to come to an agreement on the next course of treatment for Nathan.  We will be starting a chemotherapy drug called Avastin.  Nathan's tumor is stubborn and we have yet to find a treatment to give him the stability he needs to grow older and avoid radiation at a young age or even at all.  This chemo comes with significant risks that we have not had to face in the past. Unfortunately, he is not able to have another mediport placed, so we will have to get IV's placed every two weeks which is not an easy task in a little one.  If that does not work, we will have to place a PICC line which is a more permanent IV, but he can not get it wet which means no swimming or beach for Nathan this summer.  Please pray that we can easily place the IV's so we can avoid having to use the PICC line and Nathan can enjoy the pool this summer with all the other kids. 

Today was extremely difficult because we are slowly exhausting options for Nathan and he is only becoming more aware.  We now hear him say, "I don't want to go to the hospital," or "please don't hurt me," when he goes into a room.  It is devastating to watch him fight so hard and remain a happy little boy, but to see the image of this large tumor in his tiny little brain.  We met some wonderful families today who have been through our journey and continue to walk this scary path with their children.  They reminded us that our kids need our patience and strength to feel safe and secure while they go through painful days of strangers poking and prodding them.  

Today the wind was taken from our sails yet again, but Nathan doesn't let up for even a minute.  He was running around the house like a crazy man tonight making us laugh with his funny one-liners - "Nathan is on the loose."  Tomorrow is a new day and we will wake up accepting what we all have to face next.  Although we don't have many options left, we do have options and Nathan is a fighter.  

 

As we prepare to bring our new little one into the world, days like today remind us to be thankful for the many blessings God has given us.  Through all of your love and strength you give us what we need to tackle this new challenge. We will sacrifice everything and always put him first to make sure Nathan feels secure and loved. That is all we can give him right now.  As much as we want to take time to regroup and recharge, Nathan never stops fighting, so we will be with him every step of the way.

 

Thank you for the faithful love, support, and friendship you give us every day.

Love,

Mike, Beth, Nathan, and Baby Leckey

April 21, 2014

Happy Easter!  We enjoyed a wonderful day yesterday with Nathan.  The weather was perfect, Nathan was feeling great, and we were able to enjoy this beautiful Holiday with our families.  It really was a perfect day!

We are at a critical point in Nathan's care and the possibility of him being removed from the vaccine study.  Over the past week, he has shown a great improvement and we are hopeful he will continue to progress in a positive direction during this period of time off the vaccine.  If he continues to improve over the next week, we will keep the scan on May 12th.  If we do not see an improvement, we will scan sooner to get a better assessment.  He is fighting hard and I know our prayers will be heard.  

Easter 2014

April 10, 2014

Good Evening,

Thank you for all of your thoughts and prayers over the past several weeks. Today was Nathan's 6 week follow up scan.  Nathan's symptoms have declined over the past 6 weeks which did not give us a great deal of hope that we would see positive results today.  He has had difficulty drinking, swallowing, managing excess saliva and congestion.  In addition, he has been functioning on an increased lack of sleep as he is regularly up 4-6 times a night with insomnia and an inability to stay asleep for long stretches.  Nathan has his good days and bad days, but works extremely hard to accomplish the tasks of the day that we so often take for granted like eating, drinking, and sleeping. 

Our oncologist always wants to hear what we have to say first before giving us the results of the scan because Nathan is so good about protecting himself when he knows something just isn't right.  We were thankful that our oncologist, although on medical leave, was involved in guiding his care today.  Please continue to keep Dr. Jakacki in your prayers - she has dedicated her life to treating her patients like a Mother cares for her child.

Today was no exception.  The results of the scan match what we are seeing clinically.  The overall tumor is basically the same as it was 6 weeks ago, but there is an area deep within the medulla where they see questionable activity.  The radiologist believes this activity is likely the vaccine working and treating the tumor. Unfortunately, there is no way to tell what is what based on the pictures taken today.  At this point, we will hold the treatment for another five weeks and give the brain time to rest and settle.  We will scan again in five weeks in hopes that his clinical symptoms improve and we can visually see shrinkage on the scan.  

As the doctor stated today, this is "uncharted territory" because there is not enough data to prove anything.  This vaccine study has enormous potential and we are very close to seeing positive effects, but it does not come without significant risk.  Unfortunately, the questionable activity they saw on the scan today is in a critical part of the brain.  It is deep within the medulla where breathing and swallowing are controlled.  There is no room for growth or error.  

So once again, we wait and pray that the next five weeks allow Nathan to recover from the treatments and we begin to see improvements in his symptoms.  He has been on the study for seven months and we have yet to hear "it's working." That is the hardest part as a parent.  Although we believe we are helping him, we don't know how far to push without damaging healthy tissue or letting him decline. We have no control, we have to trust the experts who are caring for him, and trust that God will help his body accept the treatment.  It has been a very difficult couple of weeks leading up to today's results, but we have great science in our back door that is giving us a reason to have hope.

Since our last update, so many of you have had great challenges of your own.  We have become a team over the past two yeas who looks out for each other and stands by one another in prayer.  There have been deaths of close family members, significant health issues, and yesterday the tragedy at Franklin Regional High School that personally effects so many of our dear teacher friends and superintendents who manage our wonderful schools.  When you are the parent of a sick child, you are reminded every day how quickly life can change and it is our privilege to enjoy each healthy day that God gives us.  We don't take anything for granted.  Our deepest thoughts and prayers are with all of you who have had to endure great challenges and pain.  We will continue to stand together and get through whatever life brings us.

You are our rocks who make each day a little easier.  Thank you!

Love,

Mike, Beth, and Nathan

Nathan is ready for the hospital with his special suitcase on wheels full of toys from his cousins and his new leapfrog game!!

Stay out of my way!   I have toys!

March 20, 2014

Good evening!

Happy first day of Spring!  Although the weather did not give us much hope that spring is really here, I know our warm sunny days are not far away.

Nathan received vaccine #7 today which means we are only 3 weeks away from hopefully a positive scan and Nathan going from every 3 weeks of injections to every 6 weeks.  Nathan has had a difficult couple of weeks with the vaccine then back to back viruses.  When Nathan gets any type of illness his neurological symptoms become very prominent which make things that are challenging for him much much harder.  He has been a trooper, but we hope that after he recovers from this vaccine he will get a little break from feeling sick.  

Last night we attended a healing mass at St. Bonaventure. It was a very powerful service.  After the mass, the priests prayed over each person who was seeking healing.  Two priest held Nathan and prayed over the three of us. We know God is with us every step of this journey and we will continue to trust the path that he has for Nathan.  It has not been an easy one and he continues to challenge us, but he also continues to give us the strength to handle each day. Nathan and I lit a candle and Nathan looked up and said, "Jesus, pray for Nathan." As a mother, that was one of those moments where reality hits you.  We try to forget, but this life we live is scary and real.    Nathan's next MRI is on April 10th.  We will live the next three weeks being hopeful and trusting that Nathan's body will accept the vaccine and heal him. 

You continue to amaze us with your constant love and support.  Nathan and I pray for all of you every night.  There is not a day that goes by that we do not receive a card in the mail, a package at the door, an email with words of strength and hope, or a phone call just to let us know you care.  I don't know why God put our family in this place, but I do know that he has given us an amazing gift to appreciate life and learn the true grace of good people.  Thank you! 

Love,

Mike, Beth, and Nathan   

All of a sudden getting his blood pressure taken multiple times throughout the day is the highlight of Nathan's day at the hospital.  As long as he gets to hit the green button, he is happy!

Getting vaccine #7

February 28, 2014

Good afternoon!

Five weeks ago, my husband emailed all of you to give you an update on Nathan and ask for your daily prayers during this critical time in Nathan's treatment.  After 5 vaccine injections, we learned the tumor had grown more than 25% since we started the vaccine clinical trial and Nathan was showing neurological decline.  Those two criteria required us to stop the vaccine study for five weeks to see if the tumor was swelling due to a reaction from the vaccine or if it was truly growing.  

Yesterday, Nathan had his follow up MRI and the results showed the tumor was the same as it was five weeks ago.  Although the tumor has not shrunk, his neurological symptoms have slightly improved which made our oncologists believe what she is seeing on the scan may still be tumor "swelling" and not true "growth." Five weeks may not be enough time to see the swelling go down without the aid of steroids, so we are going to continue on the vaccine clinical trial for two more injections and then scan again in 6 weeks.  At this point, our doctor is treating the child, not the image because images can be deceiving.  We are grateful for her experience and sensitivity to each child because there is no standard answer to a case like Nathan's.

One of the first things we were told when we entered Nathan in the study is they often see things get worse before they get better with this study.  They have seen results that have completely cured children's tumors, but few of those cases came without complications. Nathan received injection #6 yesterday.  The next two injections are at the most critical time in the study.  If a child makes it to injection #8, they go into what they call a "maintenance period."  At that point, the children are stable and the body is having a positive immune response.  

We are going on six months of Nathan being chemo free.  Our chemo nurse just said to me this morning, "Every hope and prayer of a parent who has a child with cancer is to cure their child without using chemo or radiation."  We were finally able to take a deep breath yesterday when our oncologist gave us the news.  We get to go another 6 weeks of being chemo free.  One of the main reasons we started the Nathan Leckey Fund, was to support this amazing immunotherapy right here in Pittsburgh.  The thoughts that it could work on Nathan never crossed our minds.  Yesterday was the first time we were able to see a glimmer of hope that this might be the answer for Nathan.  

Nathan's body has a lot of work to do over the next 6 weeks.  He is fighting through the vaccine today and his body is showing signs that it is reacting to the injections.  In Mike's last email he asked each and every one of you to take a few minutes out of every day to pray for our Nathan.  We are absolutely certain that God is hearing our prayers and answering each one of us or we would have been starting another treatment course yesterday.  Today, I ask that same request but I have learned from all of you to be very specific in my prayers to God. Every night when I put Nathan to bed, I hold the back of his head and ask God to let Nathan's body accept the vaccine and heal him from the inside out.  If all of ask for the same thing, God will hear us and answer our prayers in six weeks.

Over the past several weeks we have received a tremendous amount of inspirational support from you.  Your cards, emails, daily devotionals, mass enrollments, and phone calls have carried us through a challenging time.  The next six weeks will be difficult, but you have given us the strength to get through this.  

We love you all and are grateful to have you in our lives.

Love,

Mike, Beth, and Nathan 

Two happy boys after getting some hopeful news!

February 5, 2014

Today was another long day at the hospital for Nathan.  Nathan had a mediport placed in his right chest on December 10, 2012.  They placed it when he started weekly chemo treatments.  Although it was the last thing we wanted him to have at the time, it has been a true blessing.  We are able to numb the area and every time he needs blood drawn or a chemo administered, they can go through the port and Nathan does not have to get an IV.

The port is a direct line to the heart, so it does not come without significant risk.  We have been very lucky for over a year, but the past few months the port has looked very red and puffy with drainage, so they have not been able to use it.  After two ER visits in two weeks and countless consultations on what to do, Nathan ended up in Surgery yesterday to remove the port.  That was the right decision because it was badly infected.  The surgery lasted about 1 1/2 hours and then he was in recovery for another 3 hours.  Unfortunately, they were not able to place another port because the risk of infection is too high and the same thing could happen to the new port.  We will have to do a second surgery to place a new port.  The infection was so bad that they were not able to close the wound.  It is packed with gauze and a nurse will come for the next 6 days to take care of the wound to minimize infection.  Nathan has to have limited activity for 10-12 days while his body slowly heals.

We started at 8am in the clinic and got home around 5, but Nathan was a CHAMP!!!  He was pleasant and very patient all day.  They medications seemed to have effected him more than usual because the entire time we were in recovery he just wanted to lay in my arms and relax.  He reminded us several times that "rest is best" when you are sick...thank God for the lessons learned in Daniel Tiger's Neighborhood!  After we got some fluids in him and he started to become more alert, he looked up and said, "veggie puffs and dippy dip daddy Michael." It was like he was a mature adult laying in bed making his requests.  It was actually quite comical.  He is quickly learning the routine because his next request was M&M's.

Nathan was just under general anesthesia two weeks ago and will have to go under again in three weeks for his next MRI.  Three times in 5 weeks for a two year old just doesn't seem right, but he never complains or fusses.   It is not easy and we certainly see our share of tears, but Nathan has learned this is what he does...that is what breaks our hearts.   This is part of his life and he has accepted it much better than we have at times.  I would give anything to make these days go away and Nathan does EVERYTHING to make our family enjoy each day no matter where we are.  He never loses his spirit, his sense of humor, or his smile.  This little guy teaches more about life in one day than we could have ever imagined.

\

Waiting in the oncology clinic at 8:30am. 

Cruising the halls in their brand new truck before going into surgery. 

January 23, 2014

Nathan received his 2nd MRI after entering the Vaccine Study.  Here is the update from his daddy.

Greetings Family and Friends!

Happy New Year!  We hope you are all enjoying this cold weather and snow!  Before we know it, the spring will be here and everyone will be looking forward to summer fun.  I know you are all accustomed to receiving these updates from my wife, Beth.  However, this time I thought I would try my hand at providing you an update on our angel, Nathan.

The last time you received this update was in the fall when Nathan developed a resistance to the chemotherapy he had been receiving.  At that time, Beth and I chose to enroll him in a clinical vaccination trial being offered at Children's Hospital of Pittsburgh.  The trial utilizes two experimental drugs, which tries to mount a natural response from his immune system to fight his tumor.  The study requires that Nathan receive the vaccination every three weeks with MRIs every six weeks.  This would go on for six months.  Nathan is at the 18 week mark of his treatment cycle and we were told at his last appointment three weeks ago that the next MRI he would receive would give us enough evidence to be able to tell if the vaccination was working.  Today, Nathan had his MRI.  Needless to say, Mom and Dad were worried walking into the hospital not knowing what results were going to be communicated to us.  Nathan, as he always does, bravely sat in his stroller with Simba.  For a waking second, he seems to look at Beth and I and communicate to us that this is just another ordinary day at the hospital for him.

We met with our neuro oncologist after the MRI.  We explained to her that some of his neuro symptoms (hiccups, poor sleep, balance, left sided weakness, etc.) had been prevalent over the past few weeks.  Symptoms that we haven't seen for several months.  She proceeded to tell us that the scan was not good.  His tumor has grown significantly outside of the medulla.  In reality, the vaccination trial protocol requires patients to exit the study if he is symptomatic and if his tumor has grown by more than 25% since he entered the study.  Unfortunately, both of these requirements have been met with the most recent scan results.  However, this does not mean he is no longer able to receive the vaccinations.  He did not receive the vaccination today because our oncologist wants to wait a few weeks to determine if the growth is substantially new tumor growth or what they are calling pseudo tumor growth.  Confusing, we get it.  One of the experimental drugs they administer can produce pseudo tumor growth in patients.  This drug is an immune system booster which causes inflammation.  Sometimes, what looks like real tumor growth can be "pseudo" tumor growth and is not really tumor tissue, but inflammation in the tumor itself.  This happens about 25% of the time in patients that are dealing with the same issue Nathan is currently dealing with.  So, Nathan is not yet technically out of the study.

So, now what?  The next five weeks will be critical for Nathan as far as how his treatment plan progresses.  We will wait five weeks and scan him again at the end of February.  If the tumor remains the same size or larger, he most likely will be removed from the study.  Our prayer is that this is pseudo tumor growth as this will allow him to remain in the study.  If they remove him from the study because it is actual tumor growth, we were also told today that our neurosurgeon is seriously considering another brain surgery to remove a portion of the tumor that they can remove safely.  After surgery, he would be put on a new chemotherapy treatment plan to try to continue to attack this tumor.  Radiation is also being considered at some point along this continuum.  His MRI is scheduled tentatively for February 27th.  Needless to say, it was a hard day at the hospital.

As a Father, my job is to provide for and to protect my family.  My father, was an excellent example of someone who taught me that providing and protecting is an obligation and not a choice.  He dedicated his life to his three boys and my Mother.  I cannot tell you the mental stress this experience has had on me - someone who cares so deeply for my wife and my son.  I cannot protect Nathan the way that I want to in this circumstance.  The one lesson that nobody can teach you, is what to do when you don't have control over a situation such as this one.  So, as a father, I ask each and every one of you to continue to be mindful of your faith and commit one minute out of your day to pray for Nathan.  This is one thing I can try to help to control.  Beth and I will get through this - our foundation is a rock.  Nathan, however, needs some help and God willing, we can make it happen.  You all have been there for us over the past two years, please dig down deep and continue to help us on this marathon of a journey.  I can tell you that you are all in our thoughts and prayers and we truly love hearing from you.  The village of people you all represent collectively is one pure example of the grace of God and compassion that He imparts on each and every one of us as you all have helped us through these times.

We will continue to keep you updated on Nathan's progress as we have done for the past two years.  You are the support system that has held us together so that we can be strong parents for Nathan.  We started a blog a few months ago to help journal Nathan's story.  When he is old enough to understand, he can go to the blog and read about his fight and all of the amazing people who have been there to help him.  We try to update it every time Nathan has a treatment or a procedure.  If you would like to join the blog, the address is www.nathanleckey.blogspot.com.  If you join the blog you will automatically get the updates.     

We love you all,

Mike, Beth, and Nathan

January 2, 2014


Nathan received vaccine #5 today.  As usual, it was a long morning.  Nathan did extremely well getting his vitals, but his blood pressure and pulse were high.  They are usually high because he is screaming and crying so they chalk it up as him being upset.  Today he was a champ and did great getting his vitals, so we are not sure why they were elevated.  He told everyone about his doctors kit and walked them through how to do it...quite comical actually.   Dr. Jakacki was concerned that he was tacychardic today.  He was also very flush and had a rash all over his arms and back.  Probably just a heat rash or associated with the heart rate.  She was hesitant to give the vaccine today with his symptoms, but decided to do a normal cbc blood panel and blood cultures.  Blood counts were normal, so she gave the ok to get the vaccine.  We will wait to get the cultures back tomorrow to see if there may be a bacterial infection brewing.

We are in an extremely critical period right now.  The body is either accepting or rejecting the vaccine at this point.  Overall, Nathan is doing extremely well, but we have seen a slight decline in three of the main things we monitor hiccups, sleep, and coughing.  In the past, when Nathan has frequent hiccups it is because there is tumor growth and irritation to the medulla.  Unfortunately, Nathan has been getting them once or twice a day and had them  5x yesterday which is a lot for him.  His sleep has also seriously declined since he got the last vaccine three weeks ago.  He was sleeping through the night and naps and now we are back to being up a minimum of three times a night, some times as much as 5 or 6.  Unfortunately, we basically sleep train for 10 days, he gets better for 10 days, and then we start the whole process all over again because he gets so sick from the vaccine and can't be left to cry because of vomiting.  We are hoping that his sleep is not indicative of tumor growth as it has been in the past and things start to settle down soon.  We have also seen a slight decline in his ability to coordinate his swallow.  We will continue to thicken the liquids a little more to help him swallow safely and hopefully increase volume.  He is only taking in about 1 oz per day by mouth.   All of these things are concerning, but as Dr. Jakacki said this will be a yoyo and we just have to wait and watch.  It is so complicated to gauge because there could be pseudo growth due to the vaccine and the tumor is actually shrinking.   Only time will tell.  His next scan is on January 23rd which the nurse told me today is usually when they can tell which way this is going to go.

After this vaccine, he will receive 3 more as long as his body continues to accept it and not have adverse side effects.  Our goal is to get to vaccine #8 on March 6th.  If we get to that point, it is a very good sign that the vaccine is working and we will remain on course.  After the 8th vaccine, we will take 6 weeks off and then get the vaccines every 6 weeks for two years.  They just had their second patient complete the two year cycle.  He also has a low grade glioma.

Now we sit, wait, and pray.  Mike and I are definitely concerned at this point, but who knows what tomorrow will bring.   We have to remain hopeful that his body will continue to fight as it has in the past.  It has been 16 weeks since his last chemo treatment and he is doing GREAT!  That is extremely encouraging!

These days are long and hard and full of worry and fear.  We have to continue to trust great science and God who we know will always take care of Nathan.  Although we are tired and it is difficult to get up all night, it is in those quiet dark moments that we talk to God and we know he hears us.

Nathan loves playing with play doh and coloring.  It helped pass the long wait today.

After two years, Nathan finally steps on the scale without crying and screaming.  Pap has been training him while we wait after he gets the vaccine.  Your work is paying off Pap!!