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