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.

November 14, 2013

Nathan had his first MRI since he began the vaccine today.  It was a long day with a lot of complications, but the scan showed the tumor to be stable which is always good news.  The doctor said the first 6 week scan is usually stable with low grade gliomas, but at least we know there are no major adverse reactions at this time.

Nathan was a real trooper today.  Things did not go as smoothly as usual because they could not use his port today.  They had to place an IV in his arm which did not make him happy.  It was a long hard day, but as usual Nathan always does a great job.  He just wants to play with the kitchen at the oncology clinic.  He gets to play there while we are waiting and it makes him SOOO happy.  They just got a new kitchen and play room on the radiology floor, so Nathan was happy as can be as we waiting for two hours to get his MRI.  Nothing like seeing a two year old boy in a hospital gown playing with his kitchen!

He was not able to receive the vaccine today, so we will go back on the 20th for the 3rd vaccine.

October 21, 2013

Nathan received his second vaccine today.  Although we knew what to expect, it was still a difficult day for all of us. Nathan always remains strong as always.  The shots are very painful and he does not like getting his blood pressure taken every 10 minutes for an hour.  He played with his magnet game and he ate a HUGE lunch while we waited.   After the injections we found a kick ball and ran up and down the halls.  That is the great part about kids.  They go through so much but always pick themselves back up with a smile and let you know everything is going to be ok.  Despite everything he went through he still made us all laugh by calling Dr. Jakacki and Kassie by name and talking nonstop the entire morning. He must have known we all needed a laugh.

Unfortunately, Nathan did get very sick after this vaccine.  It makes him sick for 2-3 days and then he is back to his playful self.  His next vaccine will be in three weeks, but we will do a scan before the injections to see the progress of the tumor.

Practicing Take Me Out To The Ballgame while we wait.

Nathan and Simba - Vaccine #2

The Nathan Leckey Fund

After Nathan's surgery, we wanted to find a way to give back to our doctors and the children at the hospital.  We believe in research and know that is what what we desperately need to help find better treatments and options for a cure.  in July of 2012 with the intent to help other kids like Nathan, we started the Nathan Leckey Fund.  Dr. Ian Pollack and Dr. Regina Jakacki, our Neurosurgeon and Oncologist, started a vaccine trial for children with glioma tumors.  The initial results are were very promising.  The study is still young and needs financial support to help enroll as many children as possible and help the families with travel expenses.  When we started the fund, we never thought it would go to help Nathan in the future. 

Nathan has been treated with chemotherapy over the past year, but recently Nathan developed a resistance to the treatments.  Nathan qualified for the vaccination study and entered the study on September 26th to help fight and hopefully cure his tumor.  100% of the money donated to Nathan’s Fund goes directly to the Vaccination study and helps children who are holding on to hope for a cure. 

We have had over 150 donations in less than a year.  We will continue to support this great cause and do whatever we can to help the children who battle this awful disease every day.  

September 26, 2013

Today Nathan received his first peptide vaccine.  It was an incredibly hard day because we want to do everything we can to help Nathan and we hope we are making the right decision for his care.  Nathan has been on chemo for one year.  Although it was not easy to watch your child receive chemotherapy, we felt that we were in a safe place and it was working to control the tumor.  We know this new treatment plan has great possibilities, but it also has great risks.  Today we pray that this is the beginning of Nathan's cure.  He is the youngest child in the study, so there is no data to say what we can expect.  We just have to wait. trust the great minds that have developed this study, and pray.

Noona gave Nathan Simba to bring with him.  He is a strong king that will help Nathan be strong today as he has to endure this pain.  All of the children we meet at the hospital have more strength than we can imagine. They fight every day to be healthy.  It is amazing to see all of the kids going through such pain, but they never stop smiling. 

October 11, 2013

Two of the most wonderful women I know are hosting a ladies shopping night to benefit Nathan's Fund.  If you would like to come, it is going to be a fabulous evening for a great cause.  We would love to see you.  Please contact Debbie for more details.

An Evening to Benefit the Nathan Leckey Fund

Host:
Debbie Busteed and Keely Singer - (724) 935-7059

When:
November 22nd from 5:00pm to 9:00pm

Where:
The Busteed Home - 215 Pineview Dr.  Wexford, PA 15090

September 25, 2013

Good Afternoon!

I hope you are all enjoying this beautiful fall weather.  Unfortunately, I am writing today to give you an update on Nathanthat was unexpected.  I just wrote to you on August 22nd after his last scan. 

The past few weeks have been a little crazy in the Leckey family.  Mike has always struggled with a bad back and had surgery on a herniated disc 5 years ago.  Unfortunately, over the past few weeks he has been in unbearable pain. Steroids and strong pain medications were not touching the severe pain, so he saw the surgeon last Monday and ended up in surgery one week ago today.  He herniated the same disc again. He is home and resting, but it will be a slow and difficult recovery.  For Michael's specific case, he will most likely be off of work for 6 weeks.  Michael's busy busy life has now turned into him laying in bed reading Harry Potter and "monitoring" Nathan and I.  We will see how long this lasts...

Since Mike was scheduled for surgery on Thursday last week, we brought Nathan to the hospital to receive his monthly chemotherapy treatment on Wednesday.  I have been noticing a slight decline in some of his symptoms over the past month.  I was hopeful it was nothing to be concerned about, but the oncologist withheld the treatment last week and scheduled an MRI this past Monday.  As we suspected, but did not want to prove, the scan showed growth in both the medulla and the portion growing out of the back of the brainstem. This is the most significant growth we have seen since his surgery last June.  The growth indicates Nathan has built up a resistance to the current standard chemotherapy drugs he has been on for the past year.  At this point, a change in regimen is necessary.

Up until now, we have truly felt that we had a way of controlling Nathan's tumor with standard FDA approved drugs until he was of a safe age to use radiation or other therapies.  We have now learned that is not the case.  There are standard chemotherapy drugs available to Nathan, but the risks to Nathan outweigh the potential benefits at this point.  We need a treatment that will give him the time he needs to grow and safely use radiation. 

Last July, we started the Nathan Leckey Fund to support a Pittsburgh based clinical trial that is being used on low and high grade pediatric glioma tumors.  Since all of the money raised for Nathan's fund has supported this study, we have been following it closely, never thinking this was a road we would have to go down with our son.  At this point, the Peptide Vaccine clinical trial conducted by Nathan's oncologist and surgeon seems to be the most promising option forNathan.  It does not come without risks.  Nathan has an extremely rare tumor, so the sample of children they have used the vaccine on is very small.  Within that small sample, 60% of the children have had either complete responses or have remained stable.  The other 40% either had negative results or the vaccine did not work at all.  One of the greatest risks is rapid swelling of the tumor which we would then have to use steroids for a period of time and hope that it shrinks back or he would have to go through surgery again to resect the operable portion of the tumor.  The main problem with this is that a large portion of Nathan's tumor is inoperable.  There are many other risks, but most children in the study have had very little side effects.  

Nathan will receive his first set of vaccinations tomorrow.  He will go to Children's every three weeks for the next 8 weeks to receive the vaccinations.  He will get his normal blood draws and then receive two shots in his legs.  His symptoms will be monitored closely.  If he has any regression in symptoms, they will scan him immediately.  If not, the next scan will be in three months.

As a parent, you will do anything to help your child and keep them safe.  We have hit a point where the treatments we are giving him have no long term studies, so we have to trust that it is going to safely work.  We know this treatment has the potential to make a significant positive impact on Nathan's tumor, but it also has the potential to do the opposite.  We have to hold on to hope and pray that this experimental option gives Nathan the time he needs to make it to the next step.  

Nathan is a joy to be around.  He is a jokester like his daddy and will do anything to get a laugh.  We have been in many difficult places before with his care and he always manages to make us smile an laugh on a day when we just want to cry.  He will continue to fight and I know you will all continue to pray for him.  The only thing we need right now are your prayers and good wishes for Nathan's next battle.  As Dr. Lindenbaum said to me yesterday, the only thing you think about is recovery...there are no other options.  

Thank you from the bottom of our hearts. You have been and I know will continue to be with us every step of this journey.  It does take a village to raise a child, and you are Nathan's village of angels that pray for him every day.  

Much love,

Mike, Beth, and Nathan

August 23, 2013

Good Afternoon!

It is hard to believe that this is the last week of summer and the kids will be starting school next week.  I hope you have all found time over the summer to enjoy family and friends, relax in the sun, and enjoy this beautiful time of year.  We have had a very busy summer to say the least. On August 3rd, we left our townhouse of 8 years and moved into our new home in Wexford.  We were very fortunate to have sold our townhouse quickly and made the transition into the new home as simple as possible.  As I am sure you all know, there is nothing "simple" about moving!  Nathan is enjoying the space and is settling into his new home.  Any time he is somewhere he does not want to be or is trying to get out of something he now says, "home." Once he is here, he is happy as can be.  We are grateful for this new beginning for our family.  It has been a challenging year, but we hope and pray this is a new start for all of us.

Yesterday Nathan had his 8th MRI and 31st chemotherapy treatment.  After a very long day at the hospital, we received news that the tumor has remained fairly stable over the past three months. There is a portion within in the medulla that looks like it may be a little smaller.  There is another portion that may have grown slightly, but it is difficult to tell at this point.  Since Nathan's tumor can be a fairly fast growing tumor, we will do another MRI in two months to make sure the questionable new growth is responding to the treatments.  Stability is crucial for a tumor like Nathan's and for the placement within the brain, so although we always hope and pray that the tumor will shrink, no growth is very good news.  We will stay with the same course of treatment for the next two months. He gets it weekly for three weeks and then has off a week.  Although there are side effects from the drugs, Nathan has learned to manage them very well and continues to grow and progress despite the treatments.  Our oncologist does a fantastic job of getting just the right dose to treat the tumor without causing undue side effects from overdosing.  We know that we have a long road ahead of us, but with each scan we are extremely grateful that the current treatments are working and we do not have to move to more aggressive therapies. 

Nathan continues to receive physical therapy, occupational therapy, and now speech therapy four times a week.  He has now learned to run, climb, and bounce. He has discovered that he can climb on top of the chair and bounce up and down while watching himself in the mirror.  Of course my first reaction is to quickly tell him to get down, but then I have to laugh and smile because I am just so happy he is able to do it.  He still has his feeding tube but has gone from being hooked up 18 hours a day to 1 1/2 hours a day.  He is taking in almost all of his nutrition on his own and only uses the tube to make up the liquids he is unable to drink by mouth.  There is never a meal that goes by that I am not thankful for each bite he is able to take.  He is a strong little boy and fights hard every day to keep up with the other kids and accomplish what he wants.

It has been a wonderful three months for our family.  We were even able to take Nathan to the beach last week and watch him run freely in the sand, play with his cousins, and swim in the pool.  It was truly amazing to see him so happy and enjoying the things that we all take for granted.  Just yesterday, Nathan went through general anesthesia, an MRI, hours of waiting in hospital rooms, and 2 hours of chemotherapy.  Although he firmly said "home" all day long, he woke up this morning jumping in his crib ready to start the day like nothing ever happened.  Although I often wonder why we were all given this challenge, I am once again grateful that I am able to see and appreciate life in a way I could have never imagined.  I have dedicated my life to teaching children, but now Nathan is my teacher of how I should live my life.

There are a great deal of uncertainties on Nathan's path, but the one thing we know and trust is that prayer is helping us every step of the way.  Thank you for your constant dedication and commitment to our family.  We know your prayers never stop and we never stop praying for you.  

We wish you all a wonderful start to this new season and we will continue to keep you in our thoughts and prayers.

Love,

Mike, Beth, and Nathan

Talkowski Family Vacation - Avalon, New Jersey - August 2013

May 20, 2013

Good Evening!

Since Nathan usually receives his scans every 2-3 months, it seems like I am always writing at the change of a season.  As the end of the school year approaches and June is almost here, Mike and I have a great deal to be thankful for. We are approaching the one year anniversary of Nathan's diagnosis.  Nathan was admitted to Children's on May 30th of last year for feeding trouble.  On June 2, we received the dreaded news that Nathan had a brain tumor.  On June 5, our very courageous 8 month old little boy underwent an 8 hour brain surgery to resect as much of his tumor as they possibly could.  On that day, we didn't know if our son would make it through the surgery because he was so week and fragile. On that day, we sat with our families as we patiently waited for any small update the nurse would give to let us know that our son was still alive and doing well.  On that day, we rejoiced the moment the nurse came out of the OR to let us knowNathan had made it through the surgery and was in stable condition.  On that day, we all took a deep breath when his surgeon humbly said he was able to remove 80% of the tumor and he believes the tumor to be benign.  On that day, my brother text messaged us the following words that remind us that this is a journey and each day we work towards makingNathan a healthier little boy than he was the day before.

"Today is the first day we get up and don't have to try and figure out what is wrong with Nathan. Today is the first day we get to cure Nathan. Today he stops getting worse and starts getting better. We have the right pictures, the right diagnosis, and the right surgeon and a stronger 8 month old than anyone can imagine. Today he starts to get better."

You have all walked this journey with us over the past year.  It has been many long days at the hospital, hours and hours of therapy, and countless prayers.  The last three MRI scans have not shown the results we had hoped for, butNathan has continued to fight through whatever he has been faced with.  We finally received some great news afterNathan's last MRI this past Thursday. We learned that the tumor has remained stable from his scan on March 6th. There is no new growth and the inoperable portion of the tumor within the medulla has remained the same.  For a tumor likeNathan's, that is great news! We know that chemotherapy will most likely not be the final cure for Nathan.  The goal of the chemotherapy treatment is to hold the tumor as stable as possible until he is old enough for radiation, which is usually the cure for children like Nathan.  The absolute youngest age that radiation is safe for a child is 3. The younger the child, the higher the risk for long term effects.  It appears that we have found the right combination of medications and the right dose to hold the tumor at bay for now.  We will continue to follow the same regimen of three weeks of chemo and one week off for one year as long as Nathan can tolerate it, the tumor continues to respond in the same way or better, and he does not build up an intolerance to the drugs.  One of the most difficult things for Mike and I to do is watch these "poisons" as I like to call them go into our child's body.  We have no idea what kind of long term effects they will have on Nathan, but we know it is our only choice.  After this last scan, we were finally able to take a deep breath and cry tears of joy knowing we finally found something that is working.

Nathan has continued to make great strides developmentally.  He finally took his first few steps right before his 19 month birthday.  He gets a real kick out of himself when he actually lets go and walks a few steps on his how. Walking will be a challenge for Nathan due to the left sided weakness, but as we have learned...don't even try to challenge him because he will win every time.  He continues to take more and more food by mouth which allows us to decrease the amount of food he gets through his feeding tube.  One of his greatest challenges is drinking.  He is unable to take consecutive sips from a cup or a straw and only wants to drink from a spoon.  He also continues to not use his left arm and hand unless he has to.  Although his sleeping has improved, it is still a daily challenge.  Nathan's tumor effects almost every aspect of his development, but he has learned how to compensate for his deficiencies and function very well.  

We know God is hearing our prayers.  We know there is no way Nathan would be doing as well as he is right now if we didn't have this incredible support system that prays for him every day.  Oddly enough, Nathan's favorite thing to do right now is say prayers over and over and over again.  After we are done with every prayer we always have to say, "God Bless Nathan, Amen." Once we are done, he calmly looks at us and says, "again." So what do we do...you got it...say them again and again.  During his chemo treatment at the hospital today the people next to us must have been wondering what in the world was going on.  My little 1 1/2 year old sat on the big chair and listened to me say prayers for about an hour.  Although never easy, Nathan found a way to make watching my son receive chemo for 2 hours very manageable today.  Thanks little buddy!  If repetition scores any extra points with the "man in charge, " I think we are in good shape!

Please know that you are all in our thoughts and prayers every night.  Thank you for your continued support and love.  Please know that your prayers are working.  It is the greatest gift you have given Nathan and our family.  We all get to celebrate with this update because we finally got to hear some positive news this week.  When we spend time in the oncology clinic like we did today, we realize how lucky we are.  It is an extremely humbling experience that reminds us what is important in life.  We are grateful for each and every one of you.  Having Nathan with us one year after his diagnosis is not something we think about lightly.  I am sure some of those parents we were with this afternoon may not have their son or daughter one year from today.  You can bet that I gave my little man an extra hug tonight!

From the bottom of our hearts...thank you!  We hope you all have a relaxing summer!

Love,

Mike, Beth, and Nathan

March 6, 2013

Hello Everyone! 
It is hard to believe that the last email I wrote was right after Thanksgiving.  I am not sure how days turn into weeks so quickly.  Although Nathan and I enjoyed playing inside yesterday and looking at the beautiful snow covering the trees and streets, we are anxiously awaiting spring when we can go outside and play.  The second it is warm enough to go outside for walks at the park, we will be there every day.  If you are ever bored and want to join us, we would love the company!!  

Since December, Nathan has been receiving weekly chemotherapy treatments to continue to treat the remaining tumor.  We have a nurse that comes to our home every Wednesday morning to administer the chemo.  That has been a true blessing!  This particular type of chemo only takes about 20 minutes to give from start to finish as opposed to 3 hours from his previous chemo treatments and Nathan can be in the comfort of his own "safe space."  He sits on his little chair, watches Barney, and he and Mickey get chemo together.  I am not sure how any part of watching your one year old child receive chemo could be adorable, but somehow watching Nathan and Mickey receive the treatments together is really cute! Overall, he has tolerated the treatments very well.

He has continued to shock us all with his remarkable progress.  The therapy that he receives four times a week has proven to be a significant part of his ongoing development.  He can now cruise the entire perimeter of the house, climb up the stairs, crawl faster than I can keep up with, and he is officially a climber!  If there is a step, ledge, or box, he is on top of it. He is still not able to walk, but we are working on it.  He has also made significant progress with his eating and drinking. He passed part of a swallow study last week that will now allow him to start drinking safely again.  About two weeks ago, Nathan started taking his first sips of thickened chocolate milk thanks to my husband.  That was the first time he has drank since May 30th of 2012.  Mike and I were elated to see him drink.  He is still not able to drink thin liquids like water, but we are thankful for a significant step in the right direction.  He is also eating enough by mouth that we are able to decrease the amount of food we are giving him through the feeding tube.  It has been a slow and long process, but he is starting to trust food again and really loves to eat.  He loves chocolate just like his mommy and daddy!  

Today we had Nathan's 6th MRI scan to see the progress of the tumor.  Obviously, our every thought and prayer was that we would see a positive result today.  There was a mixed response to the treatment he has has been receiving.  Part of the tumor that resides outside of his brainstem that grew from the September-December timeframe is now gone.  The part of the tumor within his brainstem that shrunk from September-December has now grown back.  We now know that different parts of the tumor are responding differently to the types of chemo we have used.  At this point, we will change regimens again and do a combination of the two drugs he has received over the past six months.  He will be given both drugs during week 1, one of the drugs for weeks 2 and 3, and then have off for one week to let the body recover.  We suspect this will be harder on his system than what he is currently on.  We will go back to the long infusions at the hospital during week 1 every month and then the other two weeks will be given by the home nurse.  We are hopeful that we will see a positive result from this new combination treatment because we have seen partial responses by both drugs when used independently. This is more aggressive than what we have been doing for the past six months.  We suspect that his blood counts will remain low for the duration of this treatment.  We have learned to spend most of our days inside playing together.  We will have to continue to be cautious, but hopefully the warm weather will allow us to get out more and give him the ability to play with his friends. 

Although we are becoming parents who know the routines and procedures, somehow days like today never get easier.  We always remain hopeful, but we have also learned to be realistic.  We learn to become comfortable with what we know.  Unfortunately, today was another day that we had to receive news that our son will have to go through something that we would not wish on anyone.  He will have to fight harder to continue to develop at a rate that is appropriate for his age.  He has not let us down this far, so we know he will continue to amaze us with his strength, courage, and will to succeed.  During our neurology appointment today, I asked the doctor what Nathan's symptoms should be based on the image of the scan.  He looked at Mike and I and said he would never match the image to how Nathan has progressed since receiving his diagnosis.  Based on the image itself, he would venture to guess that Nathan's breathing would be severely compromised, he wouldn't be able to eat or drink the way he does, he wouldn't be able to move the way he does, and he wouldn't be able to talk as clearly as he does.  He simply stated, Nathan is remarkable for what he is dealing with inside his brain.  My heart sunk then I teared up and realized that Nathan is in the midst of this battle, but he is winning.

Every night when we say our prayers, we ask God to watch over and take care of all the people that pray for us every night.  I remember my dad talking to me when I was younger and questioning my faith.  He said that I will have an experience in my life when God will show his face and I will know he is there.  Mike and I see God in Nathan's bright blue eyes with his ever enduring perseverance every single day. He is with him, he is with Mike and I, and he is giving us the strength to fight this battle.  Thank you to each and every one of you who has taught us to believe in the power prayer.  Nathan's fund at Children's Hospital hit $25,000 this month.  We started the fund in June.  Our oncologist looked at us today and asked what we do to fundraise.  We said nothing, we have a support system that you can not begin to imagine.  We have the greatest family and friends that anyone could ever ask for.  From the bottom of our hearts, thank you!

Much love,
Mike, Beth, and Nathan

December 5, 2012

Hello Everyone!  

Happy Winter! The last email I wrote was in September and all of the kids were starting their first week of school.  Now we are all preparing for the Holiday season and looking forward to time off with family and friends.  We have had a wonderful three months.  Nathan celebrated his 1st birthday and has enjoyed spending time with his family and friends.  We have had our ups and downs over the past several months, but we are truly thankful for each healthy day.  

Over the past few months, Nathan has made remarkable progress in his development despite starting chemotherapy.  In March, we were told that he would most likely not crawl.  They said, "He will probably just skip that step."  He proved the doctors wrong and started crawling about three weeks ago.  He is all over the place and certainly keeping us on our toes.  Of course our every hope was that Nathan would be able to utilize the left side of his body to become mobile, but following a crawling child on a feeding tube all day definitely has it challenges.  Although difficult, it is a a GREAT challenge to have.  I never get sick of watching him make his way across the room to get where he wants to go.  

His eating took several steps backwards for about 8 weeks with complete refusal to eat.  Then in true Nathan fashion, he worked and worked until he could do what he wanted....eat what was on our plates.  With the placement of the tumor, he has a great deal of trouble coordinating his tongue and swallow.  He typically gags on the smallest piece of texture and throws up.  This past Saturday, he figured out how to eat.  He ate 16 little puffs in a row.  My jaw just dropped and could not believe my little guy was actually eating and swallowing.  Needless to say, it was another GREAT day.   Although he is still getting 100% of his nutrition through the feeding tube, he is really starting to figure out how to eat and it enjoying it.  What else could an Italian mom ask for? 

Today Nathan had his 5th MRI scan.  With all of the positive progress he has made we were very hopeful that we would receive good news today.  Unfortunately, that was not exactly the case.  There is a part of the tumor within the brain stem that has shrunk since September, but there is another part that has started to grow out from the brain stem.  At this point, we will have to switch chemotherapy treatments from once a month to once a week.  In addition, Nathan will now need a mediport to be surgically placed in his chest to administer the medication.  The surgery will most likely take place next week. This is a much more aggressive form of chemo which will cause his blood counts to drop on a regular basis and has different side effects.  In addition, there is a much higher risk of infection due to the central line.  

As you can imagine, our hearts sunk once again as we received this news.  It is one thing to put him through chemo once a month and it is another to have to watch him go through this every week.  Our greatest hope is that he tolerates it well and can go on living like a normal one year old should.  We have an exceptional team of doctors and therapist that will continue to guide his care and help him to make forward progress despite any challenges he is given.  He wasn't superman for Halloween just for fun....he is our real life superhero and he reminds us every day what the word "strength" really means.  There is never a moment that we do not want to be with him of wish we could have time to ourselves.  There is a never a moment that we mind holding him in the middle of the night.  There is never a moment that goes by that he does not teach us a deeper meaning of life.  He is our little hero. 

We know God is testing all of us.  We know he is watching over Nathan and giving him the strength to overcome all odds.  Nathan's case is very complex and has never been easy or predictable.  This new road is definitely not easy and certainly not predictable, but we have to trust that it will work.  We thought that getting a good report today would be an early Christmas present.  When I received the news I thought, "I guess we didn't get our present", but then I stopped for a moment and thought about what I was saying.  Christmas came for us six months ago when Nathan made it out of surgery with a positive prognosis.  We have Nathan with us this Christmas and that is the greatest gift of all.  The road may be longer and harder, but with your love and prayers we will continue to get through it.

We are so grateful for each and every one of you. We know many of you have suffered your own challenge this year and have still stood by our side.  We pray for all of you every night and thank God you are part of our lives.  

Merry Christmas!  We are looking forward to a fresh start in 2013!

Much love,
Mike, Beth, and Nathan

September 10, 2012

Good Evening!

As I look out the window and see the leaves starting to change, I realize that the last update I sent was almost three months ago.  The kids were just finishing their last days of school and we were all getting ready for our summer vacations.  I hope that you all had a wonderful summer and found time to relax.

It has been three months and 5 days since Nathan underwent the surgery to resect his brain tumor.  At that time, they were able to remove approximately 80% of the tumor.  The part that is left is in the medulla itself and can not be surgically removed.  Throughout the past few months, he has had a few bumps along the way, but overall has been very healthy.  He continues to receive 100% of his nutrition through a GJ feeding tube in his stomach.  He had a surgery last week to replace the initial one he received in June with the "Cadillac" version that he has now.  He is able to bathe and swim with this one where he was not able to do that with the first tube.  On July 20th, he passed part of his swallow study.  He is now allowed to take thickened baby food by mouth.  He loves all veggies!!!  Nathan's physical development has also improved drastically since the surgery.  He does three days of physical therapy a week and one day of occupational therapy.  He is making great strides and continues to shock us with his rapid progression.  He is a strong little boy and fights hard every day to get stronger and healthier.  Our days are busy with therapy and doctor's appointments, but he just goes with the flow and continues to share his beautiful smile with everyone but the "white coat people."  He still does not care for them very much!

This past Friday Nathan went under general anesthesia again to receive his first MRI scan since the surgery.  We will do these scans every three months for as long as the tumor is still there.  We were hopeful that the tumor had not grown, but unfortunately that is not the case.  Throughout the past few weeks, we have been seeing signs that the tumor was starting to impact him again.  We went in for our normal clinic appointment with the oncologist today and she gave us the news thatNathan's tumor has grown within the medulla itself and there is a slight growth outside the medulla that is pushing on the cerebellum.  She informed us that at this point we need to start chemotherapy.  As you can imagine, our hearts sunk.  As a parent, you do whatever you have to to keep your child healthy and safe, but this was one thing that I was dreading.  He has been doing so well and the last thing I wanted for him was to put him through chemo.  So within a few minutes, the IV team came to place the IV, they checked his blood counts and we learned a whole new part of the hospital yet again...the infusion room.  Nathanreceived his first round of chemo today and he did exceptionally well.  It takes about 4 hours and it is all administered through an IV at this point.  He will receive treatments once a month for the next 12 months. At that point, we will reevaluate the appropriate course of action based on the growth of the tumor.   If he is unable to tolerate this form of chemo or develops an allergic reaction, we will have to move to a form that he will need to get once a week.  At that point, he would need a metaport to be surgically placed for easier access.  He is home playing now with his grandparents.  You would never know this little 11 month old just had his first round of chemotherapy.

On June 2nd, we received the diagnosis that Nathan had a brain tumor.  We thought we would never be able to handle this challenge.  Nathangave us one look and we got through that dreaded night.  On June 5th, we sat and waited while our little guy went through an 8 hour brain surgery to remove a tumor.  We never thought we could get through that...but when Nathan woke up and shook the rattle, we new we would get through it.  When they told us Nathan could not drink from the bottle anymore and would need a feeding tube placed in his stomach, our hearts dropped because we just wanted our baby to be able to eat and enjoy food. Once again Nathan fought and passed part of the study to allow him to take some food by mouth.  Well today was another one of those days. When the doctor looked at us and told us our little boy would need to start receiving chemotherapy, our balloon was deflated once again. Well, Nathan didn't let us mope too long.  After the IV was placed, he was busy playing with his toys, smiling, and giving us all a little kick in the butt to perk up and smile.  He is our inspiration, our strength, our hero.  I know Nathan will make it through any challenge those "white coat people" put him through.  Although Mike and I want to just sit and be sad at times...that is just not going to happen with this little boy.  He is ready to fight and we will be right by his side every step of the way.  Through sleepless nights, long days at the hospital, and now chemo...we are in it to win!

Well, I must start recruiting your help again.  We know you all have one friend in a very high place that keeps our Nathan safe.  Please continue to pray that Nathan tolerates his treatments and does not need to go to a once a week plan.  Please pray that the tumor responds to the treatment and does not continue to grow.  Please pray for our strength to help him through whatever he needs.  You have been our support that helps us to get through each day. We can not thank you enough!  It is a little ironic that the same day that Nathan had his MRI was also the same day that the fund we started in his name at children's hit the $10,000 mark.  We know those generous donations are going to help our kids to receive the best care possible.  Everyone at the hospital is shocked that so much money was donated in such a short amount of time.  They have all commented on how wonderful our friends and family are.  We always say that you are the reason we are getting through this.  We have an amazing support system. Thank you!

Much love,

Beth, Mike, and Nathan

Nathan's first chemotherapy treatment

Donate to the Nathan Leckey Fund for Pediatric Brain Tumor Research

CLICK HERE

Note that your donation is for the Nathan Leckey Fund

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.