As you know, we have passed the two year mark, and we continue to be thankful that is has been relatively unremarkable.  At times it feels like we entered this world just yesterday, and other days it feels we can’t remember life before the clinic.  It will be very strange when we no longer have the connection to the clinic.  Jack is very excited to be starting kindergarten in two weeks.  Dawn and I regularly talk about how this has changed everything in our lives, we do accentuate the positives and try to move past the negatives quickly.  Jack is now starting to think about his Make-A-Wish.  At this point it appears the family will be heading to Disney at some point next year.

Thankfully the last few months of Jack’s treatment and health have been uneventful.  Treatment has been going very smoothly, and he now visits the clinic for treatment only once per month.  His counts and levels have remained in the right spots and they felt he no longer needed to come in every two weeks to be monitored.

We have been fortunate with his health.  Jack continues to thrive and be a regular kid.  On his 4th birthday he decided he was ready to ride his bike without training wheels.  After a 1minute overview of how to ride without them, he pedaled off and never looked back. 

The family also had a vacation to Bermuda with Dawn’s family (32 of us) on a cruise out of Boston.  Jack’s appetite kicked in on the cruise, as he polished on 3 servings of prime rib one night.  Needless to say, the wait staff was impressed.

Although the first year was not as difficult as we imagined it would be, we can’t wait for the next 2 years 2 months of treatment to pass.

Today was a major shift for My Buddy Jack. We have now begun supporting families fighting childhood leukemia.  Today Jack visited Children’s Hospital to meet a girl that was diagnosed with leukemia three weeks ago.  Grace, a first grade girl from the school Pete works at, was diagnosed on April 1^st with ALL.  Her family has been doing very well with this life changing news and diagnosis.  Grace is still in the hospital and will be for a few more weeks.  She had been growing her hair for the last few months to donate to Locks of Love.  The irony is, this amazing little girl wanted to donate her hair to those that are fighting cancer, and now she is having the same fight.  Kelly (Jack’s aunt), volunteered to join us in our visit to the hospital and became Grace’s hairdresser.  The pictures show Grace’s donation to Locks of Love.  During the haircut, Jack talked non-stop but was able to explain what a port is and how it works (the apparatus in his chest that allows for his chemo therapy to be injected).  Unfortunately we are becoming aware of more families fighting childhood leukemia, but as we set out to do…we are now supporting families in the fight.

Thankfully Jack’s past few months have been uneventful.  He is now starting to grow peach fuzz all over his head and the small patches that never fell out are becoming quiet thick now.  With a full head of hair the only physical reminder will be the port in his chest.  As parents we are amazed at how quickly you can learn to accept cancer, due to fact that he is responding so well.  Jack is a typical 3 year old that tries our patience regularly, and we are able to treat him just as we did before this diagnosis—giving time-outs and all.  Each day Jack continues to take a cocktail of pills as part of his chemo, and treatment at the clinics is approximately once a month now.  For one week out of the month he takes steroids.  We don’t see any change in his personality during this week, but the week after he becomes Mr. Drama.  With fewer trips into Boston and stability in his treatment plan we are finally feeling like a “normal” family.

Today we took our regular trip into Boston for Jack’s treatment, but it was a little different this time. Today we began the LAST PHASE of his treatment, Maintenance. Although it’s the longest one (lasting approximately 3 years), it requires less frequent trips to the clinic and gives us a more routine protocol to follow. Basically it gives Jack’s body a chance to stabilize itself moreso than the other phases. Jack has been doing so well with all the treatment – now more than ever happy to discuss it all with anyone who will listen! Just ask him and he’ll give you an earfull!

We are very excited to be at this point, and will begin counting down the days until we can celebrate the END of chemotherapy and hopefully a cured son! Thank you all for your continued thoughts and prayers – they are doing their job and helping our little one (and us!) manage this whole situation.

Many people wondered what it looked like and what happens when Jack goes to the clinic.   A “regular day” at the clinic entails Jack checking in and then a short wait.  He then sees Kathy to get weighed, measured, have his temperature and blood pressure checked.  After that he gets to picks a room to use for the day.  An artist painted different themes in each room; you’ll see part of the Red Sox room.  Mary Jo, his nurse practitioner, is a good buddy of Jack.  They both get excited to see each other.  She conducts his checkup, and Suzanne, another good friend of Jack comes in to access Jack’s port-a-cath.  This is a plastic unit that was surgically placed under his skin to allow chemo drugs, fluids, and blood to be drawn or injected.  Suzanne will stick a needle into his chest and attach “his lines.”  Visits can last for many hours, during these times he can watch movies, play games, or even spend time with many volunteers.  On this day Jack and Stephanie were doing an art project to make a replica of his Kiki.

Below are some pictures that Rob Balducci took at the clinic on Thursday.   Here are a few photos to show part of Jack’s day at the clinic.  There are many more individuals that come in and spend time with Jack on each visit.  The toy chest is the box that many of you filled with your generous donations of toys.  After a child has a procedure or experiences a major event in their life (i.e. birthday), they are allowed to select a toy from the toy chest, which makes a tough day a little easier.   

At the Yawkey Clinic

Heather from the Clinic, Dawn, and Tina Balducci

Jack at the train table, before his appointment

Doctors and nurses at the stationMaryJo hanging out with Jack

MaryJo looking for potatoes 

MaryJo finishing Jack’s exam and Suzanne getting ready to access his portThe toy chest

Stephanie and Jack making a Kiki replica 

2 Kikis