This blog has meant different things to me at various times of John’s journey; a communication tool, a way to connect John with his supporters, a fundraising & awareness platform and most importantly a place where I could express my feelings about the horror of childhood cancer.
After 4 ½ years I’ve made the decision to take it down.
While I am going to miss the opportunity to connect with you all, I feel that it’s time to give John the reigns and let him decide how/what is put out there about his life.
So, with mixed emotions, I say goodbye to the blog that has documented the darkest and brightest days of John’s cancer journey.
Lots of love XO,
Brief update on John:
Over the summer John started back at school (North Carolina has a virtual public school where John is taking online classes). His goal is to return to the classroom in the next year or so.
Last month, John returned to St. Jude for his trach revision surgery. He wanted to say goodbye to the physical reminder of that trauma so STJ’s ENT, Dr. Thompson, did a wonderful job making his scar virtually disappear.
We also had a wonderful clinic visit with Dr. Pui & Martha who were especially thrilled to see John walking without his cane! John continues to make great progress with his Physical Therapy - requiring only his leg braces to assist his walking.
Since this visit was a quick surgical visit, having nothing to do with “leukemia”, John really enjoyed visiting his care-providers and showing off his progress!
We return to STJ later this fall for his 2-year BMT follow-up visit. That is a HUGE milestone, especially for John! It’s going to be a jam-packed, intense 5-day visit. He literally has 29 appointments; every specialist that has ever laid hands on John during our 4 ½ years at STJ will examine him – that’s a lot of care-providers! (and let’s not forget all of our social visits J)
John will be posting updates on his Twitter account and you can follow him @GKjohnjhagen