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

Sorry everyone for the extreme lack of updates lately. This one is weeks overdue. Things have been crazy since we've been home. Iv'e been working a lot. Far more than i had expected to after coming home. This is a good thing we just weren't really prepared for it. Jess has her hands full at home with the kids all day and taking Freya to rehab 3 days a week. Big thanks to grandma for all the help sitting in with Fen on rehab days.

 Rehab is going ok I suppose. Freya hasn't made a ton of progress since we've been home. She got worse for a little while after hurting her arm. She has since recovered from that and is back to where she left off. She still has to get around by "scooting" on her bum. She very recently started trying to crawl a bit again. She was starting to crawl more when she hurt her arm. We're pretty sure that's part of the reason she hurt herself. Since then she refused to crawl at all but the last few days we've caught her doing it here and there on her own. She still can't walk without help. She asks to all the time however. Since we've been home she doesn't seem to tolerate it for nearly as long as before. Granted while we were in Mayo she was getting rehab 7 days a week, 2-3 hours a day. Now its only 3 days a week and we miss days due to weather, being away for other appointments,  and lately because of her counts and everyone being sick. The rehab team at Children's has reached out to our outpatient team after hearing that there hasn't been much progress. Freya was sized for new orthodics on our last visit to the cities. We pick them up on our next visit. The tone in her left arm seems much better but she still wants nothing to do with using it. We're pretty sure her frustration is holding her arm back. We tell her all the time that "Lefty" is better than she thinks he is.

 We're on round 4 of Freyas oral chemo. The current one seems to have been her hardest one. Each round she's done this Etoposide she's been sicker than any other chemo and has less appetite. Thankfully we are on our last week of the med then she gets her 7 day break before starting Cytoxin and Topotecan again. Her oral regimen will end with one final round of Etoposide after that. We're made a few tweaks to her Gavapentin and Zofran to help with nausea and sleep but otherwise meds remain the same. We had started a very slow steroid wean but have since stopped after a few lethargic and extra sick days. It turned out that this was likely because of "critically low" white blood counts. The doctors think she probably caught a little bug (from Fen most likely) and her counts were so low because of fighting or having fought it off. We've decided to just hold off on her steroid wean until chemo is over since she still has one more round of this stuff that hits her like a truck.

Last month we had a whole slew of appointments from her MRI, to oncology follow up, endocrine, rehab follow up. It was a long busy week. Freyas MRI came back not only stable but looking a bit better. The overall mass off the tumor remained the same but under contrast it looks less active. I'll attach the picture at the end. Theoretically the more white an area of the tumor is, the more active cancer cells are present. The area that was previously white was now just light grey. Our oncologist told us that it's typically about now that we start to see new growth with this type of aggressive tumor. Things were looking and sounding very good.

With that said, as many of you know, along our journey we've become good friends with a family going through the exact same cancer with their little boy Bjorn. There is a very long and perplexing story of eerily similar turns on our families winding road. Now is not the time for that story but i will say that it has brought their family very close and dear to our hearts. On our way home from our week of appointments we read that the MRI that they had done that same week had not come back so positive and our hearts sank. They did have new growth and have had to change protocols to address this. Our thoughts are with them always and we send them all of the positive vibes and we ask all of you to do the same. We were since able to make it up the their benefits and spend some time with them. Freya and Bjorn had an absolute blast playing together on their few play dates. We're convinced that one day those 2 kids will marry and have some kind of super-baby that will likely save all of humanity.

 Here is a link to their caringbridge and gofundme.

Bjorns Caringbridge

Bjorns GoFundMe

 As I mentioned before, Freyas counts are still really low so we've been taking it pretty easy since our visit with Bjorn and fam. She'll go to rehab but that's about it until she starts to recover. Thankfully this is her last week of this chemo so next week she should recover nicely. We'll go back to Minneapolis mid May for a clinic follow up and get round 5 of oral chemo. We'll pick up her new orthodics. She went with red spiderman boots this time! Her next MRI is in July and we also have our first follow up appointment in Rochester that month. I'm about to send some emails to try and land the MRI the same week so we can maybe head straight from Minneapolis to Rochester.
  • Right as I finished updating this she started to crawl again. She's doing it better than before and loot at "Lefty" go!
    Right as I finished updating this she started to crawl again. ...
  • Tumor there in the top left quadrant. The one on the right was from January, the left is from April. Note how much less white is in the pic on the left. 
    Tumor there in the top left quadrant. The one on the right was ...
  • Warrior playdate! They had soooo much fun together. 
    Warrior playdate! They had soooo much fun together.
  • First time Great Grandma got to see Freya since this all started! 
    First time Great Grandma got to see Freya since this all started!
  • 5 minutes of things being too quiet. I find our bedroom door shut and open it to find this.  
    5 minutes of things being too quiet. I find our bedroom door ...
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