Help Freya beat AML

$6,538 of $50,000 goal

Raised by 68 people in 10 months
2 weeks ago Freya was at Dr. Wohl's office getting a strange looking bruise checked out. Later that night she was admitted to the Children’s Hospital of Colorado for leukemia diagnosis and treatment. 

1) Diagnosis. Freya's diagnosis is AML, which stands for acute myeloid leukemia. 

2) Treatment. This form of cancer progresses quickly. The medical team has been working aggressively since Freya was admitted, they ran tests and collected blood and biopsies throughout the first week and inserted a central line in her chest with which to administer the chemotherapy drugs. While they were operating to insert the central line, they also did a lumbar puncture (spinal tap) to collect a sample of spinal fluid to determine that there are no cancer cells in the spinal fluid. (Luckily the spinal fluid analysis results were negative for cancer)  

The treatment plan for AML is very intense and aggressive. The overall road map here is as follows:

 - Five cycles of treatment. Each cycle consists of the following:

      - 10 days of chemotherapy consisting of three powerful chemotherapy drugs, during which her white blood cells will be wiped out (along with her immune system), followed by

      - several weeks of recovery, during which she will be closely monitored and treated for any side effects of the chemo drugs 

      - 5 days of "break" during which she can leave the hospital but only if her blood counts are high enough to demonstrate her immune system being back up. 

- Overall this will be about 6 months, all in the hospital except for those 5-day breaks. Cami believes (and the rest of us agree) that the risks are too high to try to go back home to Sheridan during these breaks so she will be getting an apartment near the hospital in Denver. 

3) How is Freya doing? Pardon my French but Freya is a total badass. It's been a roller coaster for sure, and she is now trying to get used to the new hardware in her chest, (and feeding tube in her nose) plus taking the meds without vomiting has been a challenge. There have been a few moments of elevated temperature and she is dealing with lingering pain from the spinal tap and the general malaise of having her blood counts out of whack. She has had one transfusion of blood. She has been sleeping a lot since Friday. When I left her and Cami mid-day Sunday she was starting to perk up a little. I think it will be real touch and go until she gets into some sort of routine.
As of this evening (9/30) latest update from Cami is that her appetite was back up and she was going to get her some mac n cheese. That was good news after the rough weekend!  There are good counseling and social work resources at the hospital that will help. And speaking of Freya, Cami is a total badass too.

4) What now? Well, Cami, being the total badass mama that she is, is resolute in her commitment to stay by Freya's side until this awful awful thing is gone. That means staying either with her in the hospital or in an apartment nearby. She will need to either quit her job or take some sort of leave of absence. John and Judy (Granddad and Momo) will take Oswin and Alaric back to Sheridan with them and they will split time between Cami's house and John and Judy's house most likely. 

  - Practical advice: for those of you on this list who have fought this beast up close and personal in the past, we would love "in the trenches" sorts of advice. 

We can't thank you enough for your support and we have immense gratitude for this amazing family and community of ours. The funds will be used toward her care.

Go Team Freya!
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We want to thank everyone who has given to Freya's fund to help with her journey. We are so happy to inform you that she is now in remission and back home in Sheridan. Her permanent heart damage from the chemo drugs is our new concern but she is responding well to the medication. The good news is her heart is not getting worse. Her cardiologists have told us she has only 60% usage so we have to watch her activities, diet, fluid retention, weight and other signs of stress on the heart. (They did say she might need a heart transplant at some time. But that will not happen in this first year. If she does well in her healing process she may not need one for several years. They seem to think at some point though she will with the damage she incurred.) As you see, she still has a feeding tube which also is used to administer her medication. Her appetite is coming back slowly (she still gets nauseous). Note her hair is coming back. She never did want her head shaved so some of this has stayed throughout all the chemo treatments. She has monthly visits in Denver to see both the cardiologists and cancer team. They have been so amazing to take such excellent care of Freya. She is comfortable with them and knows the hospital better than any of us. She is still frail and immune compromised so she is not attending school at this time. However, Cami continues to home school and this was one of her projects this week. Cami is her main care giver (and I have been trained also to give Cami respite.)Today we are dying Easter eggs and will be hunting them numerous times in the next few days. Again, we all greatly appreciate your generosity!! Hugs and smiles to you all. Fondly - Freya, Cami, Alaric, Oswin, Kimberly, Marc, Ivan, John and me (Judy)
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Hello again dear ones!

Please keep those prayers going for our sweet Freya. She has been moved to the cardiology ICU so that she can get continuous heart meds via IV. We aren't sure what the road ahead looks like but it's feeling a little intense at the moment. We SO appreciate all the incredible support of this amazing community. This is a hard fight and your love and support help more than we can say. THANK YOU!

With love,
Aunt K on behalf of Freya, Cami, and family
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Hello dear ones!

Here's a long-overdue update from Aunt Kimberly, some good news and less-good news. Freya has been doing amazingly well throughout all of this. She is currently in recovery mode from her 4th round of chemo. She has responded so well to the chemo that the medical team has lowered the duration of the chemo rounds from 10 days to 5 days. However, the last two rounds are typically much harder on the body and require longer recovery time so the latest predicted "finish line" from the docs is still a few months away.

The less-good news: Freya's heart has been compromised somewhat as a result of one of the chemo drugs, and there is excess fluid around her heart, lungs, and possible GI tract. The medical team is diligently working to get things back on track, but she may need to be transferred to the cardio wing or ICU if this condition doesn't improve soon. Keep those prayers coming please!

I was just chatting with Cami on the phone and Freya has just requested some cheese pizza from Domino's and some Fanta. This is particularly good news since her appetite has been virtually nonexistent for days!

I ran a marathon once, and the most grueling part was about halfway to three-quarters of the way through. That's where we are now. Just marching along and wishing with all our might that we can be done and go home.

We are so grateful for all the love and support from near and far. Please keep Freya in your thoughts as we push our way through this thing.

Much love,
Aunt Kimberly (on behalf of Cami, Freya and the rest of the Slack Family)
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November 28, 2018
An update on Freya after the second round of chemo:
She is one fierce little girl. Cancer has met its match. She did fairly well during the second round of
chemo. Only a few days of feeling ‘icky’. The good news is that she will not need a bone marrow
transplant (more good news - is that if she did need bone marrow/stem cells, her older brother Alaric
was a match). She also will not need chemo the rest of her life. Of course, she still will need to finish
the next 3 rounds of chemo and then be deemed ‘in remission’ for 12 months. But it appears we caught
it in time before it permeated her bones and organs.
She is currently an outpatient; enjoying the museums and playgrounds during off hours to avoid the
crowds. They stay in an apartment specifically for families of children with cancer or immune
Freya can’t wait to return to Wyoming to go sledding!! As we stated earlier: She is one fierce little girl
and loves to go fast and far on a sled.
Thank you for all your donations, thoughts and prayers. They have been greatly appreciated!!!
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Raised by 68 people in 10 months
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