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

Once again it's been a while. After the previous update I was holding off mostly due to lack of worthwhile information. Radiation, once finally back on track, finished up without any more surprises. Freya showed little to no notable side effects. She had a little discomfort with swallowing liquids but strangely not so much with eating. Her appetite was and is a little wonky but some of that we chalk up to age appropriate battles. Christmas in Ronald McDonald house was, while a little cramped, pretty good considering. We had to make an extra trip home to offload newly acquired stuff or we never would have fit it all. We received so much from family, friends, Children's Hospital, and Ronald McDonald House. Thank you everyone for making our Christmas as good as could be!

 We finished treatment on Tuesday January 7th but had to wait around until the 10th to come home thanks to an endocrine appointment. The weekend that followed was quite busy. When we returned home after our first fight nearly a year ago we had taken on so much new stuff then too. Every trip home brought bags or boxes of new stuff. Each of which was promptly dropped on the dining room floor and left for later. Later came and went and as we headed back to the hospital a few months ago there it sat where we left it. The last few months those piles only got bigger. Our first weekend home we started cleaning house. Freya and Fenrirs room alone yielded about 10 boxes to toss and/or donate. We've a lot of work to do still trying to get our kitchen/dining room back. We were home barely a week before heading out just ahead of the snow to visit Bjorn and Co. We love when we're able to get these kids together! Much fun was had by all and before we knew it we had to head back out Minneapolis bound.

 Last Monday was our post radiation MRI and Tuesday was the visit with our oncologist. Thankfully the scan looked good! The recurrence site was clear except for one little spot which the team is fairly certain is scar tissue. Her spine looked clear and the results of her lumbar puncture were also clear. The original tumor site still shows a little contrast but it actually looked better than before. We picked up one chemo drug along with 2 inhibitors from pharmacy in Children's and headed home. There is another chemo med but we're all waiting on the drug company to send that directly to us. 

 We've been home since Tuesday the 21st and Freya started her new chemo (what we have anyway) on Wednesday. So far things are going ok. Her appetite send to be starting to take a little hit but it's hard to really tell with her inconsistent eating anyway. The rest of the teams plan for chemo all hinges on how Freya handles this first round. Chemo post spinal radiation is as lot harder on these kiddos so what her counts are going to do is anyones guess. It is expected that her blood counts will drop quite low and likely take longer to come back up. To quote the oncologist: "there's about 5 meds (chemo) that we want to put her on but I'm pretty sure she won't be able to tolerate any of them".  We're hoping Freya continues to surprise everyone and recover better that were expecting. 

 It's been yet another busy week at home. We've been cleaning hard and nonstop and finally have our kitchen and dining room back and it feels good. It sounds like a really small thing but that catch all room took 3 full days to get uncluttered and cleaned.  Just when our house was mostly clean we finally had our at home Christmas for the kids with the stuff that we actually bought for them. Today is really the first day since we've been home that I've actually sat down to do nothing. There is still much to do but tomorrow is first day back to work again so I'm taking an extremely brief r&r session. As I finish this update (the third time I've worked on the saved draft) Freya is asleep on my chest and Fen is snuggling momma. Soon I'll make dinner and take a shower and when we get up tomorrow we try to see back into a sense of somewhat normalcy. Jess will have her hands full here at home with Fen getting bigger and badder all while hitting Freya with a slew of new medication that no one knows how she'll handle. 

 We go back to Minneapolis for some appointments on Valentine's day and hopefully we'll all have a feel for how her counts will do and can come up with a more concrete plan moving forward. We've started some new alternative meds and have even more we would like to start once we get the ok from the team. We're throwing everything we can find at this thing! I'll try to keep updates coming with any changes but we're hoping there won't be anything new to report for a while. Our next scan is probably in April so we won't know anything new outside of Freyas visible reactions to new meds until then.
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