Freya’s Story

Site created on July 3, 2018

 On June 19th our families world was turned upside down.

 Weeks before we started noticing Freyas appetite had been reduced to pretty much nil. This little girl had gone from eating most anything you put in front of her to not touching anything at all, including chocolate milk. This was our first indication that something wasn't quite right. Given her age, we chalked it up to a phase of pickiness and didn't think much of it. After a week or so of this she became constipated which was to be expected given her extreme lack of fluid intake. It wasn't long after this that we noticed Freya was napping more than usual. Instead of one 1-2 hour nap a day, it became 2 or 3 hour or so naps a day. In the midst of this we had a little getaway to Great Wolf Lodge where she had a great time but the symptoms persisted. We had hoped that the excitement would keep her energized and active. While she had a lot of fun she was still groggy and had to stop for naps throughout the days. She was also starting to complain of a few random headaches.  At this point we already knew that she had something going on and her developmental checkup was around the corner.

 May 29th: Her checkup to see how she was faring after being born at just 27 weeks went well. She was determined to be developed beyond where she should be at her age in terms of motor skills and cognitive ability. Her nutrition was discussed along with recent events and they too thought the lack of eating to be a phase to keep an eye on. The Dr. to assess her at the end of the visit noticed right away her asymmetrical smile. A smile that we had all noticed before but all just thought to be a cute, sassy, smirk. The Dr. however immediately identified it as Bells Palsy and gave us some basic information to move ahead with.  We made an appointment with Freyas primary provider after the visit.

 The wait time to get in to see our (at the time) primary Dr. is typically 3-4 weeks. We were able to get an appointment 2 weeks later, on June 12th, due to a cancellation. In the time waiting for our appointment things got worse. The tiredness increased, the headaches increased and became more severe, and now she was vomiting on a near daily basis. On June 8th, Jess had an eye appointment and since we were already at the hospital I took Freya to urgent care to try and get some answers after all the waiting with no signs of improvement. The Dr. mostly addressed the lack of eating and drinking and how that leads to constipation. Information we were well aware of. She went on to say that the constipation could be cause for the vomiting and possibly headaches. She did at least touch on the Bells Palsy, running some blood tests to see if there were any tick driven issues causing it. She mentioned that typically they like to know what caused the palsy even if there isn't much that can be done about it. She mentioned CT scans, MRIs , and i believe but am not 100% EKGs? to help diagnose a cause of the palsy. Since she was aware of our appointment with our primary a few days away we were told to keep an eye on things (The favorite thing for the Drs at this hospital to tell people) until then.

 June 12th: Finally our appointment with her primary. Yet again the constipation was  deemed to be the cause of the vomiting.  The headaches were briefly touched upon, again, being linked to the constipation. When asked about the Bells Palsy we were told that there really isn't anything that they could do about it and that was the end of that. The fact that our daughter was sleeping, at this point, 4-8 hours a day (as well as sleeping 8-11 hours through the night) was seemingly avoided. Everything was simply connected to the constipation and we were sent on our way. The next day we called our primary and got his nurses voicemail. We asked more about why Freya was sleeping all the time and were later left with a voicemail reply again going on and on about constipation, vomiting, and hydration. No mention what so ever about the extreme lethargy. The next day we called again and were greeted with another voice mail box. Same concerns were address and we received a message back later to come in the next day if the symptoms haven't improved. (The symptoms had only worsened over 5 weeks but i guess were expected to improve over the next 2 days) Our frustration with this hospital peaked and our trust in them vanished.
 The following Saturday we drove our daughter to Fergus Falls. A town an hour away with a more equipped, and we hoped, more thorough hospital. We explained what we had been through  back home and went through the timeline again. The Dr. was quite angered at the fact that we were brushed off multiple times over month long, worsening symptoms. Being unsure what tests had been done back in Morris they began labs all over again to get their own baseline. After stating that our primary claimed there was nothing to be done about Bells Palsy we were also highly recommended to change our primary to a Dr. in Fergus which we promptly did. This Dr. told us she had a feeling that whatever was going on it was all related to the palsy.  After labs were done and information gathered we were referred to a new primary and sent home. Monday morning I called to make an appointment and was offered multiple openings the very next day. I was beyond relieved to not have to wait 3 more weeks for shoddy answers as i had become accustom.

June 19th: Tuesday I took Freya to her new Primary and she was genuinely concerned with our little girl. The labs had all come back negative and she had a feeling that there was something going on inside our daughters head. She scheduled a CT scan for an hour later and showed us down to radiology and then the cafeteria where we could grab some lunch beforehand. She told me to get the scan and we could go ahead and head home after. She was going to take a look at the scans that day and would let me know some preliminary information as soon as she knew something. She was going to call me that day either way.

 Halfway home i received a phone call from the nurse asking if I had left town yet and was asked to come back so the Dr. could talk to me.

 My heart sank. I tried to stay positive but i knew. I knew what was about to happen.

 Back at the hospital my worst fears were confirmed . I was met by a tearful Dr with a manila envelope in her hand. It contained direction to the children's hospital in Minneapolis and a CD of the CT scan. Our sweet little angel had a brain tumor and it was big. All I could think of was each and every time that my baby had told us that "My head is hurting" and it crushed me. I had to call her mom... I still had to drive back to Morris to pick up her mom... She was going to have to wait for me while sitting on this devastating news. You wonder how does one deal with this? How? Why? Knowing that there is no why. Not knowing whether to take solace or sadness in the fact that our little girl doesn't even know what's happening. You don't know what to think or do. After reuniting everyone back in Morris one thing became instinctively  clear. No matter how painful, how terrifying, how sickening.... We would not show Freya anything but love and happiness. She would not see us acting any differently. I think Jess and I realized together that this is how people do it. Because we have to. Either we beat this or it beats us.


Newest Update

Journal entry by Brian Pederson

 I'm thankful to report that there isn't much to report! 

 It's been a busy week but a good week. We headed up to the cities on Tuesday to have Freya fitted for new orthodics. Her old boots had gotten a bit too short and snug and she wasn't doing very good with them on for long periods. 

 Both kiddos traveled quite well especially considering they just came back from Texas barely a week before. Jess took them on a much needed respite to Granny and Cappy's place for 2 weeks the first half of September. Thank you too granny for flying in to help Jess with the drive down. 

Wednesday was scan day and all went pretty much as usual. There was some trouble getting her port accessed and drawing well so poor Freya had to endure some excess poking and digging around with the needle. It wasn't fun but she took it quite well. The scan and lumbar puncture went off without a hitch and she actually woke up faster than she had in a while. However she was a bit more out of it for 20 minutes or so and was pouting and whining about wanting to go get her pictures done (the mri she had just finished). After some snacks and juice she sprung back to her perky self and we headed off to speech therapy. 

The last few months we've been doing the vast majority of her rehab over the computer via telehealth. She does ok most times but sometimes keeping her attention on the computer screen is a challenge. We always try to get some in person rehab while we're in the cities. She usually enjoys that much more. Speech decided to do another assessment since we were in person and Freya did so well that they think she can stop her  sessions! It sounds like they'll just want us to check in every 3 months or so to see how she's doing. 

Thursday was Fenrirs birthday! Another kids birthday spent at the hospital so we're having his "party" today. Jess is working on the icing for his cake as I write this. It's hard to believe he's already 2! He (we) got the best birthday present we could have wanted. The MRI shows everything stable! The recurrence site where the second tumor was is completely clean. No sign of anything. The original tumor site still has the little spots that are lit up but there has been no change since they showed up many months ago. The team still says that the spots don't have any characteristics of tumor and the best guess is that it's scar tissue or necrosis. The fact that it remains unchanged for this length of time seems to be a good sign. Oncology is extremely happy with the scan and says she's doing extremely well. Because of all the changes in the hospital since covid our appointment wasn't with our normal oncologist but we did bump into her in the hall on the way out. We hadn't seen her in months. Since covid they tend to dedicate staff to certain areas so they don't rotate around the hospital. Our doctor apologized for not being able to see us in person for so long and was sad to say she hasn't seen a majority of her patients in months. It was great to see her and she was thrilled to see Freya and weigh in with how amazing she looked. 

 After our brief visit we were off to orthodics to finish fitting the new boots before heading home. 

Maintenance chemo continues with random holds depending on Freyas counts. In all she's doing very well with treatment. Her meds have been tweaked to a point where side affects are minimal. Her seizures which were daily for a while continued for a bit after her med adjustment but then just stopped. She didn't have any for over a month but after the trip to Texas she had a few while there. We think it's because her med schedule was off from the trip. She has had just a few since being back home and they seem to be brought on when she's distressed. Not every time but when they do happened there's an identifiable trigger event that seems to set it off  such as tantrums, stress from a question she doesn't like, being told no, and just generally getting herself worked up over something. Neurology isn't concerned at the moment. The spasms are very mild and infrequent. We have new med on hand in case they escalate but all in all for now the seizures aren't concerning. 

Freya turns 5 next month. It's insane to think she's been fighting this monster for nearly two and a half years. She is truly astonishing and we couldn't be more proud of her. She's gotten a lot more mobile and self sufficient. She pulls herself up on nearly everything and walks while holding on to something. Most noticably the couch. She loves getting up and walking circles around the couch. She mostly does it without her orthodics which isn't ideal but we don't stop her. Hopefully these new boots will be comfortable and she'll do it more often with them on. Her left arm continues to be her brick wall. She just doesn't want to focus on using it much. It's better but definitely the slowest recovering limb by far. If she could get a bit of it's function back she'd be able to use a walker to get around. We're looking into a walker since she surpassed needing her old one. A different type food l could give her a lot of her independence back but she'll likely need that left hand to be able to help hold on. Baby steps. 

Thank you all for your continued support. The next scan will be around January and hopefully I'll have nothing to update until then! 

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