If you had asked me where I saw Evan after 1,000 days of treatment at the onset of our journey I probably would have struggled for an answer. When I first heard how long it would last I thought the nurse had misspoke. Three years?!!! But, here we are ~1,000 days later still continuing to fight. I think some people fail to realize the long-term impact chemotherapy has on the patients. Hearing and vision loss, damage to vital organs, secondary cancers and impacted motor skills are just a few of the side effects of these toxic drugs. We have been very fortunate to have only suffered a couple of broken bones thus far.
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| Family picture from Thumbs Up trip @ Great Wolf Lodge |
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| Menchie's with Uncle Rhod |
In the same vein I do have some good news to report. Evan was discharged from physical therapy a couple of weeks ago. At this time his flexibility, strength and coordination are all within acceptable standards for a child his age. This is yet another milestone to check off our list. I'm very proud of the way Evan fought through his physical challenges despite all that was going on. His therapist noted that Evan was the only child that she cared for who was able to come in and work with her on chemo days. He simply shrugs off the drugs and does what he needs to do to get better.
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| Pokemon battle |
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| Marvel Universe Live at State Farm Arena |
On February 22nd Evan went in for his monthly IV chemo appointment and quarterly spinal tap. His blood counts were perfect and he handled the long day at the clinic like a champ. Still no official end day for treatment, but we're planning for sometime in August. Additionally, since there is still concerns about Evan's immune system post-treatment we don't know how long he will keep the port or how long he'll stay on IVIG. The doctors all seem to indicate it could be a while, but obviously it's not sustainable to stay on indefinitely. The medical teams plans to convene soon to talk about what his treatments look like post-chemotherapy.
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| Music therapy during his latest trip to the clinic |
Got any plans on April 13th? If not join us for the Aurora Walks charity event (details below). Aurora Day Camp is a charity that allows children with cancer and their siblings to enjoy the camp experience free of charge during the summer. What makes it somewhat unique is it's staffed by someone from the CHoA medical team at all times and they have plans in place for transporting these children with special needs in the event of an emergency Here is a link to our team if you would like to donate or just want to hang out with us for the day.
You may recall in the blog on January 30th that Evan was able to take part in a photo session organized by Rally, but put on by So Many Angels. We received a canvas style portrait from the session and couldn't be happier with how it turned out. Once all families have had a chance to pick-up their pictures the digital images will be made available for download. It was a really neat experience and it's a great picture to hang in my mancave. Thank you to all who donated their time and resources to make this happen.
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| Almighty Evan! |
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| Dinner at Evan's favorite spot - Del Taco |
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