Danny van Schaik's Journal
Complication du Jour
Written Sep 29, 2013 8:57am by Justin van SchaikCrossword Trivia: Give me a thirteen-letter word that starts with an “O” and means “Bone Death”.
The prolonged high-dose dexamathosone steroid that’s critical to Danny’s treatment has severely damaged his knees. He’s in a fair amount of pain, wearing an $800 brace on each leg, and using crutches to keep load off of the joints …we’re holding a couple cycles of steroids and will check in a few weeks to see if he’s healing. In about 35% of kids, this will eventually lead to core decompression surgery or joint replacement.
On the other hand, the cancer is still being held at bay, he’s got a full head of hair (worn with a stylish “flip” in the front), and is making it to school most days.
The LLS Light-the-Night walk (for which Danny is an Honored Patient) will be held on October 20th at Provident Bank Park in Pomona. If you can’t make the walk but still want to show your support, please direct your donations to the Suffern Middle School Youth Against Cancer (SMS YAC) page for the event. All proceeds are directed into leukemia research and support services.
A Happy Birthday!
Written Aug 16, 2013 7:13am by Gail van SchaikAfter the year Danny’s had, reaching 12 is quite an accomplishment! We’re making up for last year’s hospitalized birthday by enjoying activities, big, small, silly & fun, all month long. Spending time with friends over movies, meals, video games & more; walks with Disco (& even Shamrock!); and training at the gym have been great for his spirit. By happy coincidence, some “big” events have all shown up in August too: a family escape to Niagara Falls; a Yankees game (thanks, Rotella Family!); a Giants game (bonus “non-wish” from Make-a-Wish); and our upcoming Harry Potter World trip (thanks to our personal Dream Team of the Fabulous Four grandparents, Amazing Aunt Debby, Uncle Barry, Josh & Audra, and the “Great”-est Aunt & Uncle, Jayne & Jeff).
Danny’s medical-related birthday “gifts” are the results of last week’s EKG & Echo, which showed that his clots were stable enough to suspend his daily injections of fonduparinox. He should even be able to go on a couple of rides in Florida! At the clinic yesterday for his spinal tap, we also got new promising info about the protocol that he’s been on since diagnosis: the success rate of this newer therapy, with the very high risk group that he’s in, has more than doubled - to 79%! Definitely cause to celebrate!
We’re so happy to share birthday smiles with all of you, who keep us smiling all year long - even at times when it’s been hard for us to do so. So do something big, small, silly and/or fun today in Danny’s honor & put a smile on your faces too!
All Quiet on the Northern Front
Written Jul 29, 2013 4:07pm by Justin van SchaikIt's been uneventful lately, so updates have been sparse. This should not be taken, however, to mean that there's been no progress. Danny's responding to treatment, gaining muscle, growing hair (!), and looking forward to school in the fall. The months of intense training in the gym are really starting to pay off; he may not entirely back to where he was or - more importantly - where he wants to be (yet) ... but he's getting there.
We still have one year of treatment to go, though, so we're not out of the woods yet. Keep the prayers coming!