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Harlyn

Harlyn was born November 16, 2013 at 10:52 am. She was unexpectedly premature, my water had broke at 3:15 am that day and it didn't take long for things to progress and for her to make her early entrance into the world, born at 33 weeks and 2 days. Harlyn was 5 lbs, 5 oz and 17.7 inches long when she was born, pretty big for being born so early. We got to hold her for a few minutes and then she was taken to NICU to be assessed and cared for. A few hours later we were able to go see Harlyn in NICU, she

was doing really well and we were so relieved to be able to be with her again. She needed to be on a high flow oxygen mask for 4 hours to help expand her lungs fully and then she was able to breathe well enough on her own and no longer required any oxygen. Harlyn was too little to have the strength and to know how to be able to eat on her own though, so she was mostly fed through a tube in her mouth for the first few days and then we were able to start feeding her with a bottle and gradually she figured out how to nurse and built up the strength to be able to do so. She had a bit of jaundice and had a bili blanket for a few days as well. On November 29, after 13 days, we were thrilled do be discharge from NICU and to be able to take our sweet little girl home. We are so thankful for everything the NICU team did for us and taught us.


Being at home with Harlyn was so wonderful. We were finally able to relax together and snuggle more and she got to meet a lot more friends and family. Within the first few months we noticed Harlyn had a few café o lait spots on her body. She was being followed regularly by the NICU doctors in the community and they told us that could be a sign of neurofibromatosis (NF), but a diagnosis was not made for NF until you have 2 signs/ symptoms of it and Harlyn only had the one. We didn't think much of it and no one seemed to be concerned, so we just continued on like normal along with our regular appointments to see the NICU doctor. By 6 months old Harlyn had freckling in her armpits and groin, a second sign of NF, and she got the official diagnosis of NF 1. We were in shock, we didn't think she would actually end up having NF and thought she just had a few birth marks. We began to research it and find out as much about it as we could, since we had never even heard about NF until Harlyn was born. It seemed so scary, so many unknowns, and so much to take in. We were just supposed to keep a close eye on her and watch for any tumors or anything out of the ordinary that could be a sign of an internal tumor. Very overwhelming to say the least.


Over the next few years Harlyn seemed to be growing and developing normally. She was a happy baby and toddler. We continued to go to doctors appointments regularly, which now included seeing a pediatrician and a neurologist, to stay ahead of and keep an eye on things. With NF there is a lot of watching and waiting as no one really knows how each individual will be affected by it or how severely.


At 2 years old Harlyn had an mri of her head just to get a baseline and the neurologist noticed a small tumor on her left optic nerve. There weren't any noticeable symptoms from it though so we were just monitoring it and seeing an ophthamologist every 6 months to keep an eye on her vision.


A few more years went on, with regular appointments still, but not much else to worry about. Harlyn was happy and healthy and always on the go doing something. We were now seeing a dermatologist as well to monitor for any neurofibromas on her skin, which she only had a couple really tiny ones. When Harlyn was 4 years old she had another mri of her head to recheck things. The tumor was still there and slightly bigger. We were referred to an oncologist to assess. He wasn't worried and said usually NF tumors are non cancerous and with it being on her optic nerve we do not want to intervene if we don't have to so that we don't cause any further vision loss. Harlyn's vision was only slightly impacted in the one eye, but otherwise the tumor seemed to be pretty harmless. We started covering her good eye with an eye patch for a short time each day at the recommendation of her ophthamologist to keep up the strength in her weaker eye. Harlyn was really good with the patching and liked when we could find fun ones with animals and other kinds of designs on them.


September 2020, we got in to see the opthamologist on a last minute cancelation as they hadn't really been seeing many patients due to COVID. The opthamologist noticed pressure in Harlyn's right optic nerve and told us she would call to get Harlyn into the hospital asap to assess. On our way home from the appointment she called and said to go straight to the emergency at RUH so Harlyn could get a CT scan done asap to make sure there was no swelling in her head/ on her brain. We ended up staying the night and getting her scan done the next day. She did so good with it, brave little girl. Not long after, her neurologist came in to tell us there was no swelling or pressure in her brain, but that she had a tumor on her right optic nerve now and it grew fast and caused the pressure on her optic nerve and needed to be treated or it could cause permanent vision loss. We then met with the neuro oncologist and discussed a plan to start chemo to stabilize the tumor. This all seemed so surreal and not something we ever though our sweet little girl would have to go through that's for sure.


October 2020, Harlyn got her chemo port put in and started her 18 month course of chemo along with MRIs every 3 months to assess the tumors. She blew us away with her bravery and strength. The only thing she was worried about was that her port surgery would slow down her progress on crossing the monkey bars at school. Our Wednesdays became chemo days where we would spend a few hours at the hospital with our new family, the staff at the new pediatric outpatient department. We are sure thankful for all of their care and kindness. Harlyn even began to look forward to the appointments to see what new fidgets the child life team had, make slime and do other crafts and she made sure she got a popsicle almost every time she left. We stayed pretty isolated as Harlyn was immunocomprimised and covid had just started, but we made the best of it finding fun in the little things at home when we could.


February 2022, Harlyn finished chemo and her tumor was stabilized and had not caused any noticeable vision loss in that eye. What a relief for all of us. Her class threw her a party at school to help her celebrate and we continued on that celebration at home.


It has now been over a year since Harlyn finished chemo and her tumors continue to be stable. She had a small tumor pop up in her cerebellum and grow a little, but then the scan after that it was miraculously gone!


Within the last year Harlyn has gone through some mental health struggles, but just like with everything else on her path, she pushed on through and her strength amazes us. She has been diagnosed with anxiety, depression, ADHD and dyslexia. These can be more common in those with NF. Harlyn has a great team behind her that now includes a psychologist, psychiatrist, and counselor along with all her other doctors and the staff at her school. They have all been so helpful and caring. We are also very thankful for all the support we have received from family and friends.


In the last month Harlyn has now gotten her chemo port taken out and another MRI showing the tumors remain stable. We are very happy to be getting back to "normal" life now and being able to enjoy more time together and with family and friends. Spending more time camping, swimming, sliding and enjoying the outdoors, things Harlyn loves to do. She also loves to do any type of art or craft and is very creative. She is such a caring person too and loves to help younger kids and those in need. She has even used her art to raise money for those in need. We are very proud of Harlyn for her perseverance, strength and kindness. She has taught us a lot along the way and continues to now.




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