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Nathan's Rainbow Connection Letter

To our loving friends and family:

In 1979, the classic children’s film, “The Muppet Movie” was born. The film features the famous Muppet Kermit the Frog

who is traveling to Hollywood to find stardom with the intent of making people happy. The movie begins and ends with a

performance of one of the most recognized tunes performed by Jim Henson, “The Rainbow Connection.”

The song on the surface is about an individual who is trying to find one’s dreams and make them a reality. Interpreting the

lyrics of the song, however, we could contend that the song is a metaphor about life and has a much deeper meaning. The

first two lyrics convey a question to the listener about why “things” happen in life, the purpose that we serve, and simply

about the unknown source of our life’s experiences:

Why are there so many songs about rainbows?

And what’s on the other side?

As most of you are aware, ever since our son Nathan was born, he has struggled with every facet of infant life: eating,

sleeping, playing, and just being happy, as an infant normally should be. After many months of appointments with doctors

and other medical professionals, Nathan was diagnosed at eight months of age with a large brain tumor on Saturday, June 2,

2012. Nathan’s tumor was emanating from his medulla, which controls vital functions of the body such as eating and

breathing. As you can imagine, our emotions ranged from extreme fear about what the future held for “our little guy” to

frustration and even anger about “why us?” No parent ever imagines that their son or daughter would ever face the

magnitude of this type of issue in life.

After several meetings with a world renown pediatric neurosurgeon, Dr. Ian Pollack, and Dr. Regina Jakacki, a leading

pediatric neuro-oncologist, it was determined that the best course of action for Nathan was to surgically remove as much of

the tumor as possible. Our doctors were estimating that if they could remove 50 percent of the tumor we could consider this a

success. Further, nobody could tell us with certainty prior to the surgery whether the tumor was benign or malignant.

On June 5, 2012, Nathan underwent an 8-hour surgery to resect as much of the tumor as possible under the precise hands of

Dr. Pollack. At 4:00 p.m., Dr. Pollack emerged from the operating room with news we will never forget. The tumor, based on

preliminary (and later confirmed by the final) pathology results, was benign. The surgeon was able to remove in excess of 75

percent of the tumor. The tumor that remains in Nathan’s brain is within the medulla itself. Nathan will continue to be

monitored every three months with an MRI under the care of Dr. Jakacki until he is old enough to radiate the tumor to

eradicate it. It is no doubt that with the negative diagnosis we received we were given the best possible prognosis that we

could have ever imagined.

Throughout this ordeal, you, our friends and family, have asked on countless occasions what you can do for us. Our answer

has and always will be first and foremost – prayers. It sounds cliché, but Beth and I believe after many late night and early

morning conversations that this happened for a reason. We also believe that the power of prayer is what carried our family

through this and resulted in the positive prognosis we were given. We could not have done this without you and we will be

forever grateful.

Pondering this question a little further, however, Beth and I believe we need to pay it forward. We want to help future

families who may have a child suffering from a brain tumor to be given the same chance or better chance than Nathan has

been given. We want these families to avoid having to go through what we are experiencing. With that in mind, we are

asking each of you to consider making a donation in honor of Nathan Leckey to Children’s Hospital of Pittsburgh of UPMC.

Nathan’s fight is not over, and we believe this to be a great cause. All proceeds of your donation will be used to support the

research efforts of Dr. Ian Pollack and Dr. Regina Jakacki to discover new methods to diagnose and treat children with

pediatric brain tumors. We have heard from our family members how much each of you want to do for us, and this is truly

what Beth and I would like to have done. We strongly believe that God equipped these two doctors and all the other medical

professionals involved in his treatment with great talent and skills. This gave him a chance to be what a child his age should

be – happy and full of life. Please give that same chance to another child. Attached is a form for donations to this great

cause. Every contribution, large or small, makes a difference. Our fight to help this cause will not end with this letter. We

will continue to support the research behind pediatric brain tumors through other fundraising efforts in the future.

Reflecting back on the “Rainbow Connection,” later in the song, Jim Henson writes the following two lyrics:

Who said that every wish would be heard and answered?

When wished on the morning star

Beth and I believe our wish, or prayer, was heard and answered by the Lord. Nathan is a miracle. It’s not unintentional in the

song that Henson uses the term morningstar, which is also used in the Bible to refer to the Lord (Revelation 22:16).

Throughout this experience we have found a deeper faith in God and the true power of prayer. Without your prayers and

concern, I am not sure Nathan would be where he is today. We love him immensely and counted on you throughout these

trying times. We thank you for all you have done up to this point. We are so overwhelmed by the goodness that each and

every one of you has shown to us. We will pray for you in return for good health, peace, and prosperity. More importantly,

we will pray that you will get to know the Lord better like we did over the past month.

Love and prayers always,

Mike, Beth, and Nathan

P.S. Feel free to forward this letter on to as many people who know about Nathan or have been praying for Nathan.

We would like to make this initiative as productive as possible. Thank you once again!

YES, I WANT TO SUPPORT PEDIATRIC NEUROSURGERY IN HONOR OF NATHAN LECKEY.

DONOR INFORMATION _____________________________________________ _ _

Mr. Ms. Mrs. Mr. and Mrs. Dr. Other ________________________________________

First Name(s) _________________________________________ MI _____ Last Name _____________________________________

Home Address__________________________________________________________________________ Apt. # ________________

City_____________________________________________________________ State________ ZIP Code______________________

Email_________________________________ Home Phone______________________ Business Phone________________________

GIFT AND METHOD OF PAYMENT _

Please accept my gift in the amount of:

$1,000 $500 $100 Other $_______________

I prefer to make a pledge, payable over up to 5 years.

Amount $ ______________ Length_________________years

Please send annual reminders in this month____________________

Signature_______________________________________________

Check made payable to Children’s Hospital of Pittsburgh Foundation.

Credit Card - please charge my/our donation of $___________to my:  AmericanExpress Visa  MasterCard  Discover

Name on Card: ____________________________ Card #: _______________________________________________

Exp. Date: __________________________ Signature: _________________________________________________

My employer will match this gift; my form is enclosed.

Signature: ______________________________________________________________ Date: __________________

_ _ _ _ _

Please send me information about planned giving options.

This gift is in honor of Nathan Leckey (Please notify Mr. and Mrs. Michael Leckey)

For more information on ways to support the Children’s Hospital of Pittsburgh Foundation, please contact Bree Mueller at 412-692-3926 or

breanne.mueller@chp.edu.

Please sign and mail your pledge form and payment to:

Children’s Hospital of Pittsburgh Foundation

Attn: Bree Mueller

One Children’s Hospital Drive

Central Plant, Floor 3

4401 Penn Ave

Pittsburgh, PA 15224

Thank you for supporting Children’s Hospital of Pittsburgh Foundation. Children’s Hospital of Pittsburgh Foundation is the sole fund-raising arm of Children’s Hospital of Pittsburgh of UPMC.

The Foundation exists to provide financial support for the hospital’s mission to improve the health and well-being of all children through patient care, teaching and research. The Foundation is a

public charity under 501(c)(3) and 170(b)(1)(A) of the Internal Revenue Service Code. Contributions are tax deductible to the extent permitted by law.

June 30, 2012

Dr. Pollack and Dr. Jakacki,

I hope this email finds you both well.  Mike, Nathan, and I are all
home and settling in to our normal life.  We had his first physical
therapy session today and we were all amazed by how much progress he
has made in a very little amount of time.  He is starting to sit up
again by himself, was bearing weight on his legs, turning his head in
both directions, and even had a little tummy time today. He still
doesn't like to sleep very long at night, but I think that is because
he is looking for mom and dad and making sure no one with a white coat
comes anywhere near his crib.

While we were in the hospital we mentioned to both of you that Mike
and I would like give back to both of you in some way.  There is no
way we can possibly say thank you for giving our son a chance to live.
 Within a few days of receiving the worst possible news a parent could
imagine, the two of you gave us hope that our little guy was going to
make it and be ok.  The only thing we can do to say thank you is to
give back in some way.  We know the two of you are leaders in your
field.  If anyone is going to help Nathan on his road to recovery it
is the two of you.  We believe in research, and we believe in your
abilities to make great strides in the area of pediatric brain tumors
if given the resources.

During our time in the hospital, I sent out updates to our friends and
family on Nathan's progress.  There were approximately 80 people on my
email list, but yet there were thousands who received the updates and
were praying for Nathan.  We believe there is power in numbers and we
want to use that strength to help you and your research.  I have
attached a PDF file of the letter Mike wrote and we have sent to our
family and friends.  We thought you may want to know the background
behind our thoughts.  When you have some time (which we know you are
ALWAYS working) please take a moment to read the letter.  We are
grateful that Nathan's care is in your hands.

Thank you again!

Beth, Mike, and Nathan

June 24, 2012

Good Evening!

I hope you all enjoyed a wonderful weekend.  The weather was amazing and the best part was that we were able to enjoy it because we were discharged on Friday evening.  We were at children's for 24 days and I realized I forgot it was summer because we were inside so much.  It was nice to see the sun and feel the heat as we walked the neighborhood today. We thought we were in heaven just being outside for 30 minutes as a family. 

Hopefully we will be home for good now. We spent last week trying to control the infection and work out his feedings.  We were moved to the oncology floor at children's where we received top notch care.  His oncologist, Dr. Jakacki, treats each child with passion and sensitivity.  She leaves no stone unturned and makes sure her patients recieve the best care available.  We are so blessed to have her managing Nathan's health.   We still do not know the source of the infection, but the antibiotics are working and he is more like himself every day.  The feeding are still a challenge. He seems to be in less pain as time passes and more comfortable with his new way of eating.  Unfortunately, he is still not sleeping well due to the acid reflux, feedings, and just being a normal 8 month old who wakes up and wants mommy and daddy.  Mike and I just hope to sleep more hours than we are awake at night....maybe tonight is the night.  As we went to bed last night I asked God for a selfish request, please let Nathan sleep well so mom and dad can get a few hours in a row. Mike said we are probably tapped on small requests...he has been pretty good to us so far. 

When we came home, we were showered with beautiful cards that were waiting for us in the mail. We love reading them throughout the day. Nathan could not stop smiling and laughing when we got home on Friday.  He was so happy to see his toys and books.  He sat in his high chair and threw things off the side for well over an hour...we knew he was feeling better!  I used to say we were creating a bad habit.  Now I just keep picking them up and giving him more toys to throw off the side.  Oh how my perspective has changed.

This past week was extremely humbling for Mike and I.  When you spend 5 days on a floor where your child with a brain tumor is one of the healthiest kids there, you can not help to stop and be thankful for what we have been given.  Nathan has been given a chance and many of those kids will never be given a chance.  It reminded me that Nathan will have to fight to be healthy every day, but his fight could have been  a heck of a lot harder. I met so many amazing parents over the past week.  Whether their child had leukemia, was going through chemo, or waiting for a transplant, every one of them was positive and friendly.  They are all living a nightmare, but yet they found time to offer me words of encouragement and support.  One of our dear friends, Bridget, is a nurse on the floor.  We have always said to her that we hope to never have to be on her floor.  Little did I know that spending those 5 days on her floor was actually a gift.   It reminded us that life is precious  and you can not waist a single minute.  I hope we do not have to go back there any time soon, but I will always have a special place in my heart for those families.

Nathan and I would take a walk in the mornings when he was feeling well enough to go in the stroller. On Friday before we left, we spent our morning time at the chapel.  It is a beautiful space that allowed me to sit and simply say, thank you.  I will never know why this has happened to us, but I do know that there is someone very powerful making sure we get through it.  Your words of encouragement and prayers make us stronger in our faith and help us to get through each day.  For that, we say Thank You! 

Love, 

Beth and Mike

June 19, 2012

Good Evening!

 I hope you all had a wonderful father's day weekend. Mike and I would like to wish all of the dads a very happy fathers day.  We took Nathan home this past Friday and enjoyed a wonderful weekend together at home.  It was so nice to be in our own beds and watch Nathan play with his toys.  We had a quiet dinner together to celebrate Mike's first fathers day. It was a great day.

Unfortunately, I am writing this update from the hospital.  We were admitted again last night and we are not sure how long we will be here.  Nathan became very fussy and started vomiting his feedings yesterday.  The oncology doctors had us come to the emergency room last night just to check on his feeding tube.  In the process, they started to become concerned about Nathan developing hydrocephalus, which is swelling in the brain.  They did a CT scan in the ER which led then to order an MRI.  Nathan was put under general anesthesia last night at 2am for the MRI.  He finished around 4:30am and recovered well from the anesthesia. Nathan did much better than mom and dad who are running on very little sleep and worried about our little man in a deserted waiting room. Luckily, the surgeon does not think Nathan has significant swelling at this time, so he is ok just watching it.  They needed to role out several other infections, so around 11:30am Nathan was put under general anesthesia again so they could do a spinal tap.  Later in the day he became extremely fussy, spiked a fever, his heart rate was very high, and he had some swelling in his face.  We believe there is an infection, but they are unsure of the source.  They did blood work, urine samples, and a chest x-ray.  Needless to say, Nathan has gone through hell and back today.  We are still waiting on the cultures and hope to have more answers tomorrow.  He is still not tolerating the feeding very well, so they stopped all feeds for today and we will try again tomorrow.

We are doing our best to stay positive and be thankful for what Nathan is able to do.  It is horrible to see him in so much pain and not know what is causing it.  He is calm now and resting, so we hope it continues.  Just when you think he can't handle any more, he proves us wrong. He went through so much today and instead of crying all night, he bounced back and was playing with the mobile, waving hello, and calling everyone dada.  Just when we think we can't take anymore, he smiles at us and it gives us the energy to keep going.  He is our hero.  I never imagined a little 16 pound boy could teach me so much in one day.  

Well here goes my normal request....prayers.  Your prayers have been answered thus far and we hope the big guy upstairs isn't sick of us yet. Nathan needs all the help he can get to get over this hurdle.  We pray that the infection responds to medication and he is able to start eating again.  We know Nathan is a fighter and will get through this, but we want it to be quick and painless for him.  He is our little guy and we want to get him home again soon.

We are so thankful for each of you.  We appreciate the offers to cook meals and visit, but at this time we just need to sleep as much as we can and get him better.  We know you would do anything for us and we can not thank you enough.  You are our support system and there is no way we could get through this without you.  Thank you for everything you have done.  We love reading all of the cards and emails.  We will continue to fight and stay strong for Nathan.  He is doing his part, so we have to keep doing ours.

Love,

Beth and Mike

June 15, 2012

Good Evening!

It is hard to believe it has been 17 days since we started this journey.  Nathan's surgery yesterday went very well.  It was a 2 hour procedure where they place a tube in Nathan's stomach that will empty into the stomach and the jejunum.  It is called a GJ tube...I am learning something new every day. The tube is about 8 inches long so it is a little cumbersome, but I am sure we will get used to it.  In three months they will change it to a little Mickey button that is very small and he can swim and go in the bath. So far, Nathan is tolerating it quite well.  Mom is the one who gets a little grossed out...what do you expect for a music teacher who still looks the other way and holds her breath for the flu shot. Those of you who know how big of a wimp I am with medical stuff would be very proud of me.

Everything else is healing well and we are getting ready to go home tomorrow orSaturday morning.  There is a lot to get used to and they want to make sure he is handling the feeds well before they send us home.  We are all excited to be in our own home and in our own beds.  The care we have received here has been amazing, but I will not miss them waking up Nathan every couple of hours all night long.  

Nathan is really back to himself laughing at our funny faces and talking up a storm.  You would never know he just had major brain surgery 9 days ago.  Each day he continues to fight this battle.  As we prepare to get discharged, we realize how much work Nathan still has to do, but I think we would all agree that he is up for the challenge. We pray that his wounds continue to heal without infection or swelling, he continues to develop physically, and his body tolerates his new way of eating.  Mike and I are ready to take our little guy home and help him heal. 

I don't think Mike and I realize everything that has happened to our family over the past two weeks. It will take time to process this all, but if there is one thing we do know is the unbelievable support system we have.  We know everyone is busy, but you have all taken time to let us know you are there and that is all we need.  Mike  and I have learned more in the past two weeks about life, parenting, and faith than most people learn in a lifetime.  For that, we are grateful.

Keep those prayers coming...now the hard work begins!

Much love,

Beth and Mike

June 11, 2012

Good Evening!

I hope this email finds you all well. I wanted to give you a quick update on Nathan's progress. We are still here at children's. It has now been 13 days. We have been on the neurosurgery floor and have been receiving excellent care.  Nathan has progressed remarkable well.  All of the doctors and surgeons are completely amazed by how quickly he has bounced back.  If it were not for Nathan's feeding troubles we would have been discharged today. He still has a lot of neck pain, but he is only taking Tylenol. If this were one of us we would still be asking for IV pain meds.  They always say kids are resilient, but it is amazing to watch the progress from day to day.

Unfortunately we received a piece of bad news today.  We did a swallow study and they determined that Nathan is aspirating all liquids and baby foods.  Which means that it is not safe for Nathan to eat anything by mouth because the food can go into his lungs. Nathan was aspirating thin liquids before the surgery, but we were hoping this would improve after they removed so much of the tumor.  There is still reminisce of the tumor in the part of the medulla that coordinates swallowing.  Our hope is that over time the swelling around the tumor will go down and Nathan will be able to coordinate his swallow so he can safely eat by mouth.  This may happen in three months, three years, or maybe never.  We just don't know right now.

Nathan will undergo another surgery tomorrow to insert a gastric tube into his stomach.  Nathan will receive all nutrition through the tube for now.  The good news is that he can swim with this tube and it will be more comfortable for him.  Unfortunately, Nathan is 8 months old and this is the time that babies learn how to explore different foods and textures.  Nathan will have a long road of therapy ahead of him, but as we all know this little guy is TOUGH!!!

We knew there would be bumps and sets backs along the way.  We pray they don't come often, but we have to be thankful for the moments we have.  At this moment I am able to watch my little boy sleep soundly in his crib.  A week ago today we were not sure if that was going to happen.

So once again, I ask for your prayers for Nathan tomorrow.  We pray the surgery goes well and Nathan adjusts quickly to his new way of eating.  We have seen our prayers being answered one by one.  Nathan's recovery is nothing short of a miracle.  We know God will continue to take care of our little guy, but it never hurts to remind him.

Mike and I truly love hearing from all of you. It helps to make the days in the waiting rooms go by quickly.  The greatest gift you can give us is your thoughts and prayers. They are helping all of us get through this difficult time.

Much love,
Beth and Mike

June 10, 2012

From mom to the family:

 Dear Family,

I just want you to know that God has Granted Nathan His choicest blessing.  Uncle Norm and I  have no words to describe our most humble gratefulness. Your prayers, your phone calls, your love, your concern,

 and more prayers will never be forgotten.   Nathan is now out of ICU, has shed all but one tube..he ate pears and cereal and loved it, and had a bath today. We can now say that we are winning a complex

medical battle that started Saturday with the news of the tumor thru Tuesday with the extensive brain surgery to today when I saw mommy and daddy holding their little boy on their loving shoulders.

We are thankful that a humble  surgeon with gifted hands came into Nathan's life on Tuesday.   Please continue to pray for Nathan that he continues his remarkable recovery.   

When we are faced with unbearable pain, it is our families, friends,  and their prayers that enables us to cope with the challenges that we must deal with.  

We thank each one of you.

zia teresa and uncle norm

June 9, 2012

Good Morning!

Yesterday was a great day. We received the final pathology report and Nathan has a Juvenile Pilocytic Astrocytoma, which is a grade 1 non-infiltrating tumor. That is the best possible outcome we could have hoped for. The oncologist is comfortable with holding off with chemo for right now and repeating the scans in 3 months.  Nathan was also moved out if the ICU last night and ate rice and pears for the first time. It was all around a perfect day for Nathan. We are so grateful.

He is still in a lot of pain and has now developed anxiety to the nurses and doctors....wouldn't you??? These babies are smart! He also has a great deal of trouble settling enough to fall asleep. We hope taking him off of the steroids in a few days will help. We will try to feed him again today.

We are thankful for each step in a positive direction!  Our prayers continue to be answered every day! 

Much love,

Beth and Mike

June 7, 2012

Good Afternoon!

I am writing to you from the bedside of a very courageous little boy who is soundly sleeping without a ventilator. This is a great day!

Nathan has been in the ICU since he got out of surgery Tuesday evening. Since then, he has been on a ventilator and has had approximately 10 different lines and tubes hooked up to him.  After 2 trial runs, they removed the ventilator around 11:30am and Nathan is breathing very well on his own.  That was one of his biggest obstacles since the tumor is in the medulla which is the area of the brain that controls breathing. He is doing extremely well so far. He has moved both arms, both legs, opens his eyes, and emotionally responds to our presence.  It is safe to say that since I can hold my little boys hand again and look into his eyes I may never leave this chair next to his bed.

The surgeons and oncologist have both been in and they are extremely pleased with the results of the surgery.  They actually think they may have gotten more of the tumor than they thought, possibly more than 80%. We are still waiting on the final pathology report. We hope to receive that tomorrow or Monday.  The hope is that over time we will start to see improvement in Nathan's symptoms.  Although the tumor is still in the place that controls many of Nathan's problems, the lack of pressure to that area should make a huge difference.  We just need to take one day at a time to wait and see what our little guy does. As long as his airway remains open, we will most likely move out of the ICU by the weekend.

Two main questions we still do not have answers to are: what type of tumor is it and what are we going to do to treat the remaining tumor. If the tumor is benign, we may be able to just let it go and do scans every three months until we can use radiation.  If not, he will need to have chemotherapy for several years until he is old enough to safely use radiation.  The other challenges are that the airway needs to remain open so he does not need a trach, the cerebral spinal fluid continues to drain appropriately to avoid a permanent shunt, and the big question is will his airways be safe to bottle feed or will he need to have a g-tube in his stomach.

Nathan still has quite a fight, but each day he is better than he was the day before.  Our prayer is that trend continues.

God has answered every one of our prayers.  We know there are hundreds of people knocking on his door with the same request, please help Nathan.  Lets keep bothering him with the same request, help Nathan to be strong and fight each day.

Mike and I are beyond overwhelmed by all of you.  We can not even begin to thank you for the warmth and compassion you have shown us. You give us the strength to get through each day.  Although we do not have time to respond to all of the emails, we love to hear from you.

Much love,
Beth and Mike