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