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!