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

Colin's Crew Cookies & Hope Bake Sale

Hope you can join us tomorrow December 9th for the 2nd Cookies & Hope Bake Sale Event.  The Grandmother's of Colin's Crew have been very busy planning and along with 30 other bakers you are bound to find your favorite sweet.  All funds raised will benefit Colin's Crew programs such as in-patient meals for 2013.

Time: 12:00-4:00pm
Location: Co. 3 Firehouse, 1958 Middletown Ave, Northford

New Port

 Long day but good day. Colin did great through the port replacement surgery, lumbar puncture and the chemo infusion later in the day. Counts are on the high side but no change in meds at this point.  We were surprised when he asked if I remembered our promise to stop at Toys-R-Us when were getting ready to go home. Needless to say, we are continuously amazed at a child's resilience and we were happy to make a quick pit stop at Toys-R-Us on the way home.

Maddie spent the day with Papa as she has a cold and fever last night so no school today! Of course, by the time we got home, she was back to her normal happy self, a cough but fever free. Thanks Papa!

Take out tonight, chinese was the winner. Papa stayed and worked on the lego's that Colin picked out at Toy-R-Us.  A good ending to a long day. We are now all tucked in safe and sound. 

Thank you for all your messages, texts and love!

Port Issues & Surgery Next Week

It's been a while! 

Two weeks ago Colin had his scheduled blood check and his port was very sleepy, we could not get a blood return.  The nurses tried TPA (which is a medicine to remove any clots) and unfortunately it still did not want to cooperate.  Colin was a trooper because the increase in heparin caused a metallic taste in his mouth.  We learned quickly that constant drinking helps so while Mommy held the cup to Colin's mouth, the child life therapist, with the assistance of Maddie, had the next one waiting.  After a few more attempts, a few tears and nearly trying every position but standing on our head we still had no luck.  We were then instructed to come back the next morning so they could do a few tests.  It was at this point it became apparent that we were going to end this chapter with a bang because just prior the nurse gave us Colin's end of treatment date which includes three more IV treatments.

So, bright and early the next morning the trek down to Yale began.  Colin and Daddy were there by 8:30 and were ready for a long day. The first attempt for a blood test did not work so a dye test and x-ray was performed which came back clear. Decided against surgery at that point and another attempt using  TPA and after a few more attempts the nurse was able to squeeze out just enough for a blood test. We were hoping the TPA would continue to work but...

Fast forward two weeks to today ...

The port continued to not cooperate with no blood return even after a dose of TPA.  After many attempts, it was decided Colin will have surgery next week to replace his line.  The line must be replaced in order for him to receive his IV treatment.  It's possible he's grown out of his line and we are very fortunate we got this far with his original port.  Because he was not able to have his spinal tap today he will receive that next week immediately following his port surgery.  His doctor will perform the spinal tap in the OR while he is under anesthesia.

In addition, Colin's counts remain on the high side so we will increase his medicine (methorexide) to 6.5 pills once a week. Daily dose of chemo (6mp) will remain the same.  We hold off on his steroids until next week.

While this is a minor setback, we are reminded we have so much to be thankful for so we wanted to take a moment to say thank you for supporting us through this journey ... we could not have done it without each and every one of you.  We wish you and your family's a Happy Thanksgiving!