Freya’s Story

 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

Lets try this again. I had started this a few days ago but being home with the kids alone i had to stop every 5 minutes. Eventually i came back to a black screen and a dead battery and lost it all. Ah the simple things we overlook when we're busy.

 So here we are. Finally, we made it back home! Hopefully for good at least for the time being. It's been a while as usual since the last update. I'll try to fill in the gap. The last few weeks at Mayo we continued to focus on Freyas intense rehab and she continued to love it. She has been standing and walking more and more with assistance. They spent a good amount of time trying to teach her some mobility tricks for getting around at home. We continue to work on transitions from laying to sitting, rolling, crawling, etc. The only real hiccup we encountered before we left was having to replace a feeding tube after it was accidentally pulled out. Soon after we had to change it out again because it was too small and her skin was irritated. After that change she had some more redness and a raised sore along with some discharge that was concerning. Luckily it's subsided and her site is looking great again.

 After being discharged from Mayo we spent a few nights at Ronald Mcdonald house in Rochester before heading back to Minneapolis for outpatient appointments the following week. Monday was another full brain and spine MRI, a hearing test, and lumbar puncture. Tuesday was a clinic follow up with our oncologist to review and talk about the next steps. The MRI looked very slightly better even though they say we won't see results of radiation for a few months. The tumor is minimally smaller and less defined. The tumor looked less "bright" or more hazy which theoretically could mean it is less active. All in all oncology was pleased with the scan. We go back in a few months for another that should hopefully show some of the affects of radiation. The hearing test showed no change since before starting chemo which is great. Seems chemo hasn't effected her hearing. The lumbar procedure went well but we realized later that we never actually heard any results of the check. We hope that means there was still no signs of cancer in her spine.

 We finally got to visit Freyas Neuro-surgeon. He had not had a chance to see her in many months and he was thrilled to see how great she was looking. I think the last time he had seen her she was barely looking around. We are very happy he was able to see how far she has come before we came home. He made a comment in passing while we were chatting that was a welcomed minor comfort. "If the tumor comes back we still have viable options for surgery". Considering the artery through the mass that is good information to have in the back of our heads. We were under the impression that more surgery was very dangerous in terms of repercussions.

 The last week has been crazy. It's sooooooo nice to finally be home but there has been so much to do. The poor house was in shambles from sitting mostly vacant for 7 months and there is stuff piled in every room that we've acquired along the way. Between storage that we had to get to live comfortably in hospital rooms, meds and supplies, and toys/clothes we've bought or been gifted the house is overflowing. I've dropped of boxes and bags every trip i made home to work a few days and it added up quite substantially. We've gotten the house mostly cleaned and rearranged to make room for the new things. We have a makeshift nurse station in the corner of the living room. Nearly every food item that wasn't canned got tossed and we had a major shopping day to resupply. Things are falling into place but there is still so much to do.

 Outpatient rehab starts this week. We had our evaluation last week and will be going to Glenwood (30 minutes away) 3 days a week for PT,OT, and ST. Hopefully Freya continues to improve with therapies 3 times a week. While it's easier on Jess only having to get her there 3 times a week we were hoping for 5. We'll see how progress goes after going from 7 days a week to 3.

 Freya will be doing oral chemo for the next 6 months. We will have labs drawn each week while in Glenwood for rehab to check her counts. She isn't expected to bottom out like that last high dose rounds of chemo but they will still drop. They expected slight nausea and appetite loss and we've already begun to see it. She is still eating but not as consistently. Some days are worse than others. She has gotten sick twice in the last few days but we aren't sure if its from chemo or if her steroid dose has been too low. We have been trying to tweak her dose since there was some confusion between Mayo and Childrens. She is keeping her meds down so far which is a huge plus. Last time her cortizone was low she was getting sick after each and every med. Each month we will return to Minneapolis to get the next round prescribed and do clinic checkups. We will try and visit some of her nurses each trip. We wanted to visit last trip but the days were long and hustling so we just didn't have the energy after all our appointments.

 Sleeping had gotten better but that was short lived. Freya is generally doing better. She had 4 or 5 days where she actually slept through the night. Fenrir was sleeping consistently through the night for a few weeks. In the hospital they generally didn't really wake each other up. I'm guessing that was because of all the white noise because here....they definitely wake each other up... Freya is back to waking up randomly throughout the night but generally we can get her back to sleep relatively quickly. Unfortunately, She almost always wakes Fen up before falling back asleep. Once he is up he needs to be fed and burped and put back to sleep. The last few nights we've been up nearly once an hour between the 2 of them. We are all sleeping in our room at the moment. One, because we've be re-acclimating and trying to get a feel for Freyas pattern outside the hospital. We want our eyes on her as much as possible. Two, because there just wasn't any room anywhere else for anyone to sleep. Freyas room was the catch all for overflow while we straightened up. We've since purchased a video baby monitor with 2 cameras so now that the house is getting in order we'll try splitting them up at night. We had hoped to be finished up with the house this weekend but that just didn't happen.

 We're getting there. Normalcy is eons away in this house but a routine is falling into place. Freya is clearly happy to be home but her mobility has her very irritable now that we're in her territory. Half of the day consists of her overreaching for something, ending up on her side, then whining that she wants so get up. She can do it. She does it all the time. She just doesn't do it without encouragement. She is now truly learning that there is another child living here and not everything is hers. She is home but everything is different this time. She is frustrated. She's 3. She's re-testing her limits.  In the grand scheme however, she is doing terrific. This frigid weather that welcomed us back has us pretty pinned down inside. Even if not for the weather, Freya is and will be immune-suppressed for quite some time. We will have company but it will be limited in numbers and we will be cautious. We have no desire to revisit PICU anytime soon.

 This journey has been long and arduous and is still nowhere near its end. The progress made is astonishing and the pride we have for this little warrior princess is beaming. Thank you everyone for your continued support in every sense of the word.
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