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

 Here it is, another long overdue update. I tell myself every time to post more often as it is harder to fill the gaps when the gaps are so large.

 Since the last update Freya has finished her last 2 rounds of her oral chemo! Mostly without much to speak of. Given her past experience with Etoposide the doctors did a slight dose reduction for her final round. Freya barely flinched that month. Her appetite stayed strong and she didn't really get sick. July 11th i believe was her last chemotherapy. Hopefully for good!

 For about week or 2 after chemo finished up Freya remained about the same. She was doing pretty good. Her appetite was pretty good. She had her days but for the most part she ate well. I don't think we had to supplement any nutrition that last month. By the end of the month she was springing back even more. Her speech pattern has been improving. Her sentence structure is better and longer. In general her volume is better but she still tends to be really quiet when upset or in pouty mode. Also for some reason she always talks quiet in the car which makes the long trips to the cities harder. She always wants something and neither of us can usually hear her.

 When chemo ended we also halted all of Freyas rehab. She still just wasn't enjoying it like she used to and she wasn't making progress to speak of. First we had cut back her rehab from 3 days a week to only 1. We kept it at one because she was doing pt/ot in a pool which she did enjoy and seemed to be more beneficial. After some consult with her old inpatient rehab team at Childrens  we decided to cut even the pool therapy and just give her a break for the rest of the summer. She had been doing rehab for the better part of a year and it's apparently not uncommon for kids to get burnt out. Fortunately, Freyas little brother started crawling which motivated Freya to start crawling more again. Then he began standing all the time which again motivated Freya. She has progressed more the last few months just keeping up with Fenrir than she had been in rehab. She can walk (still assisted) more often and longer. Her steps are getting better. We also finally got a walker for her at home which she does very well with. The only issue is we have mostly carpet and it's much harder for her than hard wood or tile. She does not need any help while in her walker which is awesome.

 The end of July was a busy appointment time. First we headed back to Rochester for our first radiation follow up. It went pretty much how we anticipated. They really just asked how she was doing and if we noticed any side effects. They said she looked great and sent us on our way. The whole visit was maybe half an hour. Since it was Friday we stayed another night in Rochester and on Saturday we headed back to Minneapolis and got settled in to Ronald McDonald house where Freyas bff Bjorn was also staying for more outpatient radiation. We got some quality time in with him and his family and everyone had a blast. Those kids are great together!

 Monday morning we headed to Childrens for a full MRI. We were much more nervous this time after the reality of recurrence hitting so close to home. With that i still ask all of you to pray, meditate, and send healing energy to Bjorn and his family as he conquers his radiation every weekday morning. He is one amazing kid with an equally amazing family and we hope and pray every day for his full recovery.

 After the MRI we had a meeting with the alternative medicine specialist to see if she had any other recommendations now that chemo is out of the picture. Fortunately she did recommend a few things. So we have now added Berberine and Bromelain to our supplement arsenal. Unfortunately that doctor has been on vacation since we got the new meds so we're still waiting on a dosage so we can start giving it. Monday night was more family fun time with Bjorn and crew.

 Tuesday was a bunch of appointments but most importantly was the scan review with our oncologist. We were extremely anxious to say the least. While in getting vitals with a nurse we happened to see our doctor walk by who happily nodded and gave us a thumbs up which was a pretty big relief. When we did meet with her she confirmed that is was pretty good news. Everything looked stable! There was one small spot on the new scan on one of the slides that was slightly brighter which concerned us. We were reassured that the consensus was that is was technology related and not an actual change. Since the bright area only showed on one slide or "slice" of the MRI. Changes typically show up through multiple slices. We were also told that there was another big cancer meeting the following week and she would ask every ones opinion about it there and call us either way. ( A call last week confirmed that nobody was concerned from either oncology, neuro-surgery, or radiology. ) Given our concerns our oncologist scheduled a short MRI in 2 months just to check that spot. We will have our next full MRI in 3 months.

 The rest of the day was busy with appointments and hanging with the Bjorn clan one last time before heading back home.

 I worked the rest of the week and the following week was a vacation week. What did we do? Headed right back to Minneapolis and took the kids to Great Wolf lodge again. The last time we were there was just before she was diagnosed and she slept the majority of the time. We spent more time with Bjorn and fam of course and thankfully they were able to join us at the water park for a day! Tons of fun was had. We ate pizza and even got to enjoy a few adult beverages. After squeezing as much time as possible with all of them we headed back home and FINALLY got Freya to the local fair after missing the last 2 years. It was good to get out and let Freya be a "normal" kid again. Chemo is done so we didn't worry about counts or wearing a mask. We didn't even wipe down any rides before she got on them! We just let her play.

 I know people wonder what's happening when there aren't any updates and that's my bad. The good news is that there aren't any because there is less to report and I really hope it stays that way. Now with chemo out of the way we will be heading to Childrens every 3 months for MRIs. We will have to figure our where to go to access her port every 6 weeks since that needs to be done to keep it functioning. 3 hours is a long way for a 10 minute procedure.

 We are ever so thankful that things are going well. We are also terrified knowing that atrt has a stupid high recurrence rate for years. That was one of our questions last visit. How long until the risk of recurrence drops significantly? 5 years. Maybe 3 for Freya. She didn't elaborate on why 3 for Freya but even that is a long time to look over our shoulders. Not only ours but Bjorns as well. He's already had one recurrence and hopefully this radiation takes care of it and we never see it again.  For both of these amazing little warriors we ask that you keep the positive energy flowing!

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