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.

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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!!  

December 13, 2013

Nathan received his 4th vaccination yesterday.  It was a long day because the clinic was running about 2 hours behind, but Nathan was a trooper as always.  The injections are very painful, but after they are over he runs up and down the hallways like nothing every happened.  He has learned how to say all the nurses and doctors names, so everyone got a kick out of hearing him say their names and Merry Christmas.  Although these days are never easy, the clinic is a very comfortable place for kids.  They make it as easy as possible for Nathan and that is all the matters.  He loves playing with the kitchen and all the new toys!

It has been 11 weeks since he started the vaccine and stopped chemotherapy.  He is doing extremely well.  Nathan is eating well, started drinking more by mouth, is getting stronger every day, and talks non stop.  All signs are pointing in the right direction at this point, but the next 6 weeks are the most critical.  The doctor told us that now is when we will start to see the immune system build up and things will go one way or the other.  Now is the time they start to see brain swelling from the vaccine and it is very difficult to know what is real tumor growth and what is a reaction.  We will monitor him closely over the next several weeks leading up to vaccine #5 and the scan on January 23rd.  

Unfortunately, Nathan doesn't feel great today.  He gets a fever and has some nausea following the vaccine.  We hope it only last a few days and he will be back to his crazy self soon!

We are so grateful to be enjoying this holiday season with Nathan.  He loves Santa and all the wonderful things that come with Christmas.  We take each day as it comes and are grateful for the healthy days.  Nathan continues to remind us how important each day is and to never take life for granted.

November 20, 2013

Nathan received vaccine #3 today.  Since he was not able to receive the vaccine following the MRI, we went back today and everything went very smoothly.  Although the shots are still very painful, Nathan has learned how to use the blood pressure machine and thinks it is great he gets to push the green button.  After 2 1/2 years of screaming when he gets his blood pressure taken, all of a sudden pushing the green button makes everything better.

Pap was with us and helped to keep things fun for Nathan.  The two of them run up and down the halls after the vaccine is injected to help get things moving through his legs.  Nathan was fighting a cold before the vaccine so hopefully this will not effect him even more.  He usually has trouble sleeping for about a week after the vaccine.  We hope each time gets a little easier.