Hello family and friends!
We truly hope this email finds you all doing well. In Pittsburgh, it was 60 degrees today with a bright sunny sky. It was a perfect way to end a long two weeks of several doctors appointments and long days of travel. Although we are tired, our hearts are full of sunshine and hope because of the wonderful news we have received.
The last update I sent was on August 31st. At that time we had just received news that Nathan’s MRI was stable. It was 5 months since his last chemo treatment. On February 8th, we went into Nathan’s MRI with great apprehension and concern based on the December scan and several other signs that were concerning. When we received the initial results in Pittsburgh, they told us the three spots we have been monitoring have grown. Our appointments with Nathan’s doctors in Boston were not until the 15th. The week between the MRI and the appointment seemed like an eternity, but we remained hopeful Dr. Kieran would have a positive response to the scan.
When we got to Nathan’s appointments at Dana Farber, Nathan’s neurologist immediately said, “The scan’s look good. We have no concerns.” In that moment we were quickly reminded that every ounce of time, energy, and money that goes into traveling to Boston every 2-3 months is worth it. It was by far the best decision we have ever made for Nathan’s care over the past 5 1/2 years. Nathan’s oncologist and neurologist proceeded to thoroughly examine Nathan and watch his every move. When they took him in the hallway to watch him run, he said, “Look what I can do. I learned how to skip.” He skipped up and down the hallway with such pride. His neurologist looked at the oncologist and said, “That is all I need to see. That is how we know we do not need to treat Nathan’s tumor.” It may seem like a very natural task for a 5 year old to skip, but for Nathan we know how many things have to be working well for him to coordinate this type of gross motor movement. His doctors then discussed with us that although we are seeing waxing and waning inside the tumor, we will continue to wait and watch until we see his symptoms regress or the actual size of the tumor starts to grow. We are walking a very fine line because we know the tumor is metabolically active. It is not as stable as we, his parents, want to see, but this is where being under the care of one of the best pediatric neuro oncologists in the country allows us to sleep peacefully. There is no greater feeling than having such amazing minds committed to Nathan’s case. It is not grey to them. They have seen it all and know when it is time to push and pull.
Following the MRI on February 8th, Nathan was taken into the operating room and several diagnostic tests were performed by his ENT doctor who manages his breathing and swallowing. Nathan was diagnosed with a left vocal cord paralysis as a result of the tumor location. Over the past 2 years, we have aggressively worked with therapist and physicians to rehabilitate this area of his voice box. There is no proven data on best practices for this kind of diagnosis, so we have had to trust ourselves and his great therapists that we were doing what was best for Nathan. He has been a trooper to go through 2 days a week of intense vocal therapy and facial stimulation that is not an easy thing for a child to tolerate. He also has to deal with a mommy who is a voice teacher and thinks that pitch glides and breathing exercises are fun to do several times a day. We received amazing news on the 8th, that Nathan is now receiving complete closure of the right and left vocal cords. His brain has figured out how to retrain the surrounding muscles to do the heavy lifting for an area that has such great weaknesses. His ENT doctor, who is one of the brightest minds we have met, said that he knows what this is, has studied it throughout his career, but has rarely seen it happen. He said, “Nathan Leckey is one of the reasons why he loves medicine and makes him go back to work every day. He has done something no one would ever imagine based on the picture of the scope and MRI. Based on the picture, he should not be able to swallow, drink, sing, or breath the way he does. He is one amazing little boy and I love working with him. We just never know what Nathan is going to do next.”
On December 17th, we saw that he was doing well and decided to stop using his feeding tube. Nathan typically only drank 1-2oz of water per day on his own and the rest was given through his feeding tube. Once again, our little guy met and exceeded our expectations and did what we did not think was possible with his deficiencies. He has successfully gone from 1-2oz a day to 20oz a day in two months and stopped using his feeding tube for the first time since June 15, 2012. This is one of the greatest milestones in Nathan’s life. The location of Nathan’s tumor controls all of his vital functions and somehow he is figuring out how to overcome the impact on the nerves and function just like every other 5 year old.
Little by little, Nathan’s body is starting to recover from 4 straight years of toxic chemotherapies. Although we are seeing miraculous recovery, there are still many things that Nathan has to work through to make up for what his body has gone through. His level of fatigue and sensitivity to day to day tasks makes for challenging days, but we will continue to trust that his body will not stop fighting and recover with each passing day.
Mike and I have been given a challenge to make sure Nathan has the best chance for not only a cure, but the ability to live life just like every other child. We make difficult decisions every day on how hard is too hard to push him. Believe me, it is so hard to not hand him life in the easiest way possible. During these amazing 9 months of being off treatment we have made the decision as parents to help Nathan fight harder than ever because this is when recovery is possible. We saw the clear road and went for it. Nathan never resists when he has to work hard for his health. He tells the anesthesiologist what color needle to use, how to place the IV, tells his mommy to stop talking so he can breath through it, tells me he doesn’t need his tubie any more he can do it himself, and makes us watch his new tricks of skipping and jumping. I know the “boo boo” inside Nathan’s brain is still there and active, but we all refuse to let it stand in the way of allowing Nathan to be a strong little boy who can accomplish whatever he wants. Nathan and Mike were practicing t-ball on the driveway today. At one point, I heard Mike scream with such pride, “You did it Nathan…you did it all by yourself.” He really is figuring out this life that seemed so questionable 5 years ago all by himself.
In my last update, I talked about the necessity as parents to believe that Nathan’s journey means something. I do believe his story is a perfect manual for life. Whether it is a medical, personal, professional, or spiritual challenge, Nathan has taught us never to settle. Always be the person you are proud of and NEVER give up on something you think is possible. Trust me, no one knows better than Mike and I that life is not always equal or fair. We have been blindsided with countless horrible reports and set backs. We always choose to move forward with a positive attitude and figure out how to gain the necessary knowledge to make tomorrow better. All of your love and our strong faith in God is the reason. Thank you for riding the waves with us. We don’t know when the next major challenge will come, but we know you will be there with us every step of the way. The night of Nathan’s MRI he asked me in such an innocent voice, “Mommy, when is my boo boo going away?” The tears rolled down my face, but I told him the truth. It may never go away, but it will never stand in YOUR way either Nathan. I have to believe that is true.
Thank you for celebrating these moments of sunshine and hope with us. We could not be more grateful for each day God gives us with Nathan, Samuel, and our baby boy on the way. Things may get a little crazy in the Leckey house with three little boys running around, but we can not wait to share our laughter and love with another little brother.
Love to all of you!
Beth, Mike, Nathan, Samuel, and baby
Nathan and Samuel sitting in the Ambulance wagons that were made by his friend Tony the Paramedic!
Nathan at Dana Farber Cancer Institute after getting a great report from his doctors!
Nathan and Samuel enjoying time with their cousins at Learning Express in Lexington, MA.
Nathan LOVING the 18 inches of snow that were waiting for us in Boston.
