Jack’s Story

Site created on December 9, 2005

Welcome to Jack's CaringBridge site! 

Jack was diagnosed in November 2005 with a low-grade brain tumour called an optic pathway glioma.  He was just 6 months old at the time.  We have no idea whether or not he was born with it, or why this happened to him.  He endured 14 months of chemo to shrink the tumour and get the tumour under control.  We had some bumps along the way, including a port infection 5 weeks into treatment (that was nearly fatal), but we made it through!!

As a result of the tumour, Jack has low vision.  He has been declared legally blind, but he does really well.  Jack is also growth hormone deficient and receives Humatrope six days a week via a needle (given by Daddy).  Since starting GH therapy in October 2009, Jack has gone from under the 3rd percentile for height to just around the 50th!  The endocrinologist figures Jack should end up between 5'8" and 5'10".  Without help from the GH, he would likely only reach 5'0" to 5'2".

In January 2008, Jack's story was featured in the Meagan's Walk fundraising video.  See the video at MW Video 1 (http://www.youtube.com/watch?v=zYMdhxP-ulw) and MW Video 2 (http://www.youtube.com/watch?v=cjqoZILmFlY&feature=related) (Our family is only in the 2nd one.)  The boys are young (only 9.5 and 2.5 years old) but it gives you an idea of what we went through when Jack was a baby. 

We enjoyed 6.5 years off treatment, until a new spot that had been growing warranted new treatment.  The tumour wasn't in a "dangerous" spot but there was a risk of it doing more damage to Jack's vision.  At 8.5 years old, Jack began a new 70-week chemotherapy protocol on October 29th, 2013.  He got  Vinblastine (http://www.aboutkidshealth.ca/En/HealthAZ/Drugs/Pages/Vinblastine.aspx) once a week (Thursdays).  He  missed 3 doses for various reasons, so his protocol was actually 73 weeks.  

Unfortunately, one of the missed doses happened because Jack's port became infected 2 weeks into treatment (in the same spot the infection was when he was a baby) and he had to have it taken out.  He had to stay in hospital and receive strong antibiotics through IV.  He then had a PICC line (http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/Procedures/Pages/Peripherally-Inserted-Central-Catheter-PICC.aspx) put in so he could receive the rest of his antibiotics through an IV pump at home.  He even went to school with it!!  Instead of having a new port put in, Jack wanted to keep the PICC.  The PICC meant no needles.  A new port would mean finger pokes for blood every week, and a needle into the port through the skin on his chest for chemo.  With the PICC, everything is outside the body, so no pokes.  Unfortunately, even with a PICC cover, Jack would not swim because he knew his line could not get wet.  We were extremely fortunate though, that the PICC line lasted Jack the whole time he was on treatment.  They are only supposed to last about 6 months, and Jack's lasted 16 months!  One of the home care nurses (Jack needed the dressing on it changed once a week) told us that she has never seen one last this long, so we are very thankful it made it through the rest of treatment.

Jack handled chemo well.  He felt "yucky" on Saturdays and sometimes on Fridays and Sundays, too.  He lost the hair on his arms, legs, eyebrows, and some on his head.  Jack successfully finished this protocol on March 20th, 2015.  We celebrated with a big pool party on April 11th, 2015.  He had, and still has, his moments of anxiety and frustration but he is hanging in there.  

Jack has had a few MRI's since finishing treatment and all is stable! :)

Jack is an ambassador for Meagan's Walk, and has been an ambassador for Childhood Cancer Canada, and has done several speeches in front of hundreds of people.  The speeches can be found at the following links:

De La Salle College, Toronto, for Meagan's Walk - April, 2015
https://www.youtube.com/watch?v=c9n9XH3rKpU

Brain Tumour Research Centre, Toronto, for Meagan's Walk - February, 2016
https://www.facebook.com/kim.conway.52/videos/10154647048502814/

De La Salle College, Toronto, for Meagan's Walk - April, 2016
https://www.facebook.com/kim.conway.52/videos/10154808207127814/

Interviewed by CP24, live on air at Meagan's Walk in Toronto on May 7th, 2016
https://www.facebook.com/kim.conway.52/videos/10154862435652814/

CIBC Miracle Day, Toronto, for Childhood Cancer Canada - December 7, 2016
https://www.facebook.com/kim.conway.52/videos/10155514297317814/?t=15

Oshawa Skeet and Gun Club, for Childhood Cancer Canada - August 2017
https://www.facebook.com/steve.conway.524/videos/10154848892116003/?t=29

De La Salle College, Toronto, for Meagan's Walk - April, 2018
https://www.youtube.com/watch?v=ByeNChg4b1U

Canada's Wonderland Yukon Striker Event for SickKids - April 2019
https://www.facebook.com/566682813/videos/10158034133402814/

Jack loves gaming, riding rollercoasters, and Lego!  He likes baseball and his favourite player is Anthony Rizzo of the NY Yankees.  Jack enjoys swimming and traveling. Jack is a big history buff, and is interested in politics and social justice.  He is also a HUGE fan of the tv show, Murdoch Mysteries. 

Cherish every moment!














Newest Update

Journal entry by Kim Conway

Medical Stuff

On November 27th, Jack had his 47th (and last) MRI at SickKids. Easy peasy! 

On December 14th, we went for Jack's follow-up appointment at SickKids. His MRI results showed everything is stable!

This was his last appointment at SickKids. It was kind of anti-climatic, after 18 years at this hospital. The doctors that he had growing up are no longer there (Dr. Bouffet and Dr. Bartels). They are both retired (or semi-retired). Dr. Bartels has gone back to Germany. I am not sure if Dr. Bouffet is here or in France. Many of the nurses have retired as well. We did meet up with a few people that we were able to say goodbye to, so that was nice.

Jack now has ophthalmology care through a doctor at the Kensington Eye Institute, whom he met in the summer. He wasn't thrilled with his first adult care experience, but the doctor is great.

He will transfer to Princess Margaret for neuro-oncology but we have yet to meet the team there. Hopefully, that will happen in the new year.

Jack's adult endocrinology doctor is at St. Mike's, and we will meet this new doctor in January. 

School and Work

Jack just finished his first semester of college and did really well! He is studying Journalism. He wants to work in Communications when he is done his education.

Ryan just started a full-time job in October at a car dealership, and is doing well with that. He graduated from college with Automotive Business in August.

It's hard to believe they are all grown up!

Thanks for being here and checking in with Jack's journey!

Happy Holidays, everyone!

Love,

Kim, Steve, Ryan, Jack

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