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.

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.

No Meds and Great Blood Counts

We've been enjoying the summer so much that time has gotten away from us!  Today Colin had his check up and we're happy to report his blood counts are exactly where they would like them.  His ANC is 2100!! The Doctor mentioned that his immune system should be pretty much back to normal and he can resume immunizations.

A few weeks ago we experienced our first cold since being off treatment with a slight fever, congestion and exhaustion.  We nearly had to pinch ourselves when the fever came on .. we looked at each other and said we don't have to call and head down to the ER, right?  The fever didn't last long however the lack of color (pale) and exhaustion lasted about a week which began on Maddie's birthday.  We'd be lying if we told you it was nothing because the reality is that the emotional aspect of it is tough.  The thoughts that take over are a bit overwhelming but we remind ourselves that he is doing great and we were at ease when another one of us got sick.

Rewind:  On July 11, 2013 we were told Colin was done with his last med (bactrium) and has been medicine free since!  This was a huge milestone.  We feel like we are missing something at night or when we pack for the day.  Our next Major Milestone is January of 2014 when his percentage of relapse reduces.  In the mean time we continue to enjoy each other.

Superstitious

It's been hard to sit down and write a post ....

Call it creature of habit, superstitious or whatever you wish!

Superstitious, for three and a half years we were in survival mode and kept with the same routine.  We didn't dare deviate from it ... medicines were given the same way and same time everyday, we took the same route to and from Yale, parked in the same area, put the name badge on Teddy's neck instead of Colin's wrist, wore the same sweatshirt on LP/bone marrow days and did a lap in the healing garden after our vist.  Call us creatures of habit, superstitious or whatever you dare but the fact of the matter is we are very proud we did not miss one medicine dose or treatment in three and a half years unless it was due to low counts.  Our motto through this was......... don't deviate from the routine ...it's working!

On December 19th, Colin received is last IV treatment

January 2, 2013 Colin took his last Wednesday chemo drug (aka ewww medicine)

Over 1,600 pills later on 1/7 Colin received his last pill chemo

3 years 3 months, 23 spinal taps, over 1,600 pills and 67 IV chemotherapy his LP confirmed no Leukemia cells!

On 3/15/2013 we closed this chapter of our journey when Colin's port was removed.

Now what?  We're taking post traumatic stress head on as we begin to figure out what life is supposed to be or as the cancer world calls it our 'new normal'.  As a family, we're rediscovering each other, regaining a healthy lifestyle and making memories a priority.  For the past three and a half years, we survived the only way we knew how and were forced to put all major decisions, home projects, friendships and our own health on hold.  We're slowly figuring out our new life but in the mean time we're happy to be able to put vacations and plans on our calendar without the looming question, depending on blood counts.  Colin looks forward to playing baseball, spending time with the UNH baseball team, learning to swim, camping, attending birthday parties and so much more.  Maddie is excited about gymnastics, swimming, doing karate with Colin, being a princess and much more!  Mike and I are looking forward to breathing a little and enjoying our family!

Colin will continue his visits to Yale and will be monitored with routine checkups and blood draws over the course of the next several years.  Our next milestone is January of 2014 when Colin will be one year off treatment.  At this point his percentage of relapse decreases.  From there the clock starts ticking for one more year until we reach January of 2015 when he is considered CURED.  So, we will continue to worry, as we will for the rest of our lives, about the slightest bruise, fever, rash, ect but for now we are happy with perfect blood counts this week!

We can't begin to thank all of the people who have touched our lives. The new perspective on life that Colins's journey has provided to our family is simply to much to put in words. Thank you for all who have followed our blog and we will continue to post as we move to our new "normal".

2013 Blizzard & Fever

Yes, we've been slacking on posting and are well over due!  We'll do a rewind post shortly but wanted to give everyone an update on the past couple of weeks.

Thursday evening before the blizzard Colin came down with a slight fever, he was hovering 100 for 24 hours and slept most of Friday.  Since he had a runny nose and a cough we were confident the fever was a cause of the cold, however we couldn't help but worry.  Since he still has his port we have to follow the fever rules.  After talking to the Oncology team early Friday morning they advised we monitor him and call if the fever reaches 101.  A few decimal points was huge for us since we typically have to bring him to the ER at 100.4.  The jeep was ready for a blizzard trek down to Yale but luckily we dodged the trek through three feet of snow!  

The next morning Colin woke up without a fever and feeling much better.  He didn't skip a beat and was ready to play in the deep snow.  So at small increments he dug, built a tunnel and climbed.  Maddie on the other hand would much rather stay inside in the warm house with Mommy!  Soon after, Maddie came down with the fever but hers was much higher, pushing 103.  She spent most of the blizzard aftermath on the couch and a few days later developed an ear infection. 

Two weeks ago we had a pre-op meeting with Colin's new surgeon and discussed Colin's port removal.  We should hear shortly when the surgery is scheduled.  Counts are good, ANC 1400.  This was Colin's first arm poke in two years, he typically opts for his blood drawn from his port but in preparation for the port removal we're practicing with the arm.

Thank you everyone for your continued support and all of those that came out and took the plunge with us!  It was an awesome day and Colin's Crew is so excited to send nine families to camp this year!

Some of our favorite blizzard pictures!

Where is Colin?

It's a mountain of snow



Up to Daddy's hips

Daddy digging us out

Snow Angel upside down



30 inches

Look at me, I'm going to dive into the snow!

Body sledding

Drifts taller than Colin