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Thursday, October 2, 2014

October 2 - 5 years post Dx

Five years ago today, October 2nd, 2009, we heard the news no parent expects to hear. This date will always come with both a mixed sense of sadness and joy. Today, five years later, we look back and see how much we have come since that day. Colin is now 7, a happy 2nd grader. Maddison is 5 and is enjoying Kindergarten. Our days remain busy, but instead of scheduled around doctor's visits, they are now scheduled around Little League, Cub Scouts, Karate and Gymnastics.

We understand how truly fortunate we are. Colin will continue to be followed by the medical team, but is now entering the HEROES program at Yale. We can remember the days of Colin's diagnosis, sitting down with the medical team and plotting out a road map for treatment. The road map ended with a hopeful entry into the HEROES program and hearing the words your child is cured. We anxiously await the coming weeks where we can truly hear these words. 

October 2nd will always be a special day for us. It is a day to remember what is truly important in life. A day to remember how quickly perspectives, hopes and dreams can change. A day to grieve over what our son had to endure and a day to be thankful for how far he has come. Thank you to all who have supported us throughout this journey. We couldn't have done it without you... Love Mike, Heather, Colin and Maddie.


Wednesday, January 8, 2014

Update and Strep

Colin has experienced some normal kid illnesses over the past month with a double ear infection and today, strep throat.  This morning we had to wake him for school which is unusual and he didn't move, in fact he didn't move until noon when we forced him out of bed to use the bathroom and drink a little.  After a phone call with the Oncology team and the Pediatrician we scheduled a visit in the early afternoon with the pediatrician. Beyond being very pale, he was tired, fever, nausea and later, mouth pain, so a strep test was performed and confirmed our little guy has strep.  He immediately began antibiotics.

The Pediatrician looked me in the eyes right after she told me the strep test was positive and said if it came back negative she was going to do blood work.  This is our new normal.  We are thankful with a diagnosis of strep. What parent says that? We have accepted that this is our new normal and remain focused and positive but days like today allows the fearfulness a chance to sneak in.  Later this week if Colin is feeling better he will have his regularly schedule Oncology appointment and we pray for good results!

We had every intention of posting the below update that was written Thanksgiving week:
Since our last post we've had several blood checks with results right where they should be.  We've developed a plan to catch up on all the immunizations he missed throughout the years and will begin to see a dermatologist for his hands where he has warts and an infection they think.

Over the summer we delivered ice cream to the Guilford office for Colin's Crew and Colin asked if he could see his Doctor there so we obliged even though it is not the routine or the Nurses we've grown to love and trust over the past four years.  Since then we've had a couple of appointments there and even though the commute is a solid 45 minutes one way Colin has made it clear he won't have it any other way right now.  "Mommy it doesn't hurt as much and its so quick".  You see they do a finger prick instead of the arm and since it's a small office we are done in the same amount of time it takes us to walk from the garage to the clinic in New Haven.  While we miss our regular routine and our nurses it's nice to see Colin at ease and have full out conversations with the staff.

In September Colin started first grade and celebrated his 6th birthday medication free.  The celebration started the weekend before his birthday with a family party and the Big Boys and continued through Oct 2nd with a trip to the Toy Store for Lego City with gift cards he collected from friends and family for his birthday, dinners out, a trip to Hershey Park for the weekend with great friends and so much more.

October 2nd will always be a hard day for our family as we heard those words 'your child has cancer' four years ago so we embraced the celebration of life and while no one was around late that night we shed a few tears as we reminisced about how scared we were four years ago and the fear of the unknown.  I recall picking Maddie up one day and spotted Colin playing at recess with his friends, I paused for a long moment and embraced every second because there was a time four years ago we were not certain where we would be at this point.

The transition to off treatment was tough but we are starting to get the hang of our new normal life.  This Thanksgiving we have so much to be thankful for and it would be unfair to list them all but most importantly we are thankful for each other, our family and all of you who have been by our side through this journey.  We could not have done it without you.