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!!