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