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