We’ve been following sweet little baby Evelyn Maciag’s story since we heard about it. Baby Evelyn (at 7-months-old) was diagnosed with a malignant form of brain tumor called Atypical Teratoid Rhabdoid Tumor (AT/RT). Her parents, Katie and Nick have documented their journey and have asked for prayers from the community and beyond.
This afternoon, they’ve given an update. We asked if they’d like us to share it – and they yes. So here it is.
“Just wanted to give an update for all of Evelyn’s supporters. We apologize it has been so long since we have done so but our life’s have been so busy keeping up with all of Evelyn’s medical needs.
Back in the beginning of January we finished the last of her in patient chemotherapy! What a relief it was to be done with that portion of her treatment! Nothing prepares you to be a parent to a child with cancer, and seeing her tiny body be wracked with pain and illness from the treatment she needs to kill the beast called cancer took so much out of us. But Evie was amazingly brave and strong through out each round and many of the days managed to keep smiling. We as parents never could have made it through if it wasn’t for that wonderful smile and her astounding courage! We did have a few bumps in the road along the way but were very lucky that none of the bumps was severe enough to delay treatment or send her to the ICU.
We have been home almost a month now and finally have settled down into a routine. Evelyn still requires a fair amounts of medication and treatments to help control some of the lasting side effects of the chemo but Mom’s skills as a veterinary technician have been extremely helpful in enabling Evie to have all of the care done in her home by her Mama.
The final phase of her treatment protocol begins February 19 at Roswell Park. This will be a 6 week course of radiation treatment Monday-Friday. Evelyn will require anesthesia for this because laying completely still while getting the radiation is obviously of utmost importance. Many pediatric cancer families say that the radiation is the easiest part of treatment for their children. The biggest complaint being fatigue. However the long term side effects of radiation are terrifying for us to think about. There is a chance of cognitive changes and or developmental delays, as well as stunted growth. Many of these potential changes are impossible to predict in severity and likely won’t be evident for several years. Unfortunately radiation is a necessity because it is very well documented that it gives the best chance of a cure for AT/RT. All we can do is hope that the changes are manageable and continue to provide all the love and support that she needs to overcome any obstacles she faces. We firmly believe that Evelyn’s strength and stubbornness will serve her well and we will continue to be amazed at how she perseveres.
Currently Evie is doing wonderful at home and seems to learn a new skill almost daily! She has surpassed her oncologist expectations as to how she would be doing developmentally at this point! Every day is an adventure with our warrior princess! We want to thank everyone from the bottom of our hearts for continuing to keep Evelyn in your thoughts. The well wishes, kindness, and gifts continue to overwhelm us daily. A million thanks doesn’t come close to enough.”
We are sending warm hugs and loads of prayers to Evelyn and her parents and loved ones.
For more information you can follow along at Elephants for Evelyn on Facebook.Â
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