Lauren Jensen

Hi Community! On January 1st, Ken and Jen need a temporary storage container off their property per the city's request. This storage container followed them from their last move and contains a lot of Kiara's baby and toddler items that they have no bandwidth to go through right now. After a lot of research, I found a Tuff Shed option where the company will build a permanent storage solution on-site so that Jen and Ken can have peace of mind that they have their beloved items stored to-code. This new shed is sturdy and strong with a solid floor, nice roof, and double locking features. The only downside is the cost. It will be about $8,000 (with a discount) all-in and I will also be putting out two requests for volunteers. One request to prep the ground (pull vines and spread gravel to level it) and another batch of volunteers to move stored items once the shed is built. We would greatly appreciate any amount you may be able to give for this special project. The total we need to get to on the Go Fund Me is $72,000 to fully fund the new shed. Additionally, be on the lookout for an update for volunteers! Warmly, Lauren Jensen

From Jen 10-25-26 PART 2: I was also getting mixed info saying that there was a national list for the trial, and other places said we could get on their list. Still don’t know which is true. I did find out that the trial at Cedars Sinai has reopened, and that other locations had never been on hold. I also found out that our doctor had never looked into any of the other sites because he thought we only wanted California, never mind that there were 2 in CA and he didn’t contact the second option. I was so upset with him! Weeks had gone by when we could have been reaching out, getting onto these wait lists. But now we’ve learned that one trial site might go on hold, but that doesn’t mean all of the sites follow suit. So, at this point, I believe the national list was a thing until a week ago. I’ve heard that things have changed and each institution has there own list. We believe we are on the list for the 2 locations in LA and the location in Philadelphia. Still trying to get on others. We are also looking at a trial at St. Jude’s. They reviewed her case on Sept. 16, and finally reached out to us 2 days ago. It would be our second choice in trials. It’s a Car-T cell trial using radiation and chemo as well. If she makes it through all of their screening, we would need to go there for 4 or 5 days. They would take out some of her T cells. We would then go home, and they would use the next couple of weeks to engineer her T cells into Car-T cells. We would then come back, do more screening, and if all went well, they would use radiation for a couple of days, chemo for a few days, and then inject the cells back in to her. The hope would be that they would fight the cancer cells. We would need to be out there for a couple of months. We have also learned of a third trial which we were very excited about because it’s here in Seattle at Fred Hutch, and there’s also a location in Tacoma, along with other places in the country. It just happens that the husband of one of my fellow Mirinesse singers works for the drug company sponsoring the study. So he’s been very kind to call, email and text me info about the study. It sounds like a study we could do while waiting to get into one of the other studies we want more. So our doctor contacted Fred Hutch and then said they won’t take anyone under 18 years old at their facility even though the trial is open to people 12 and up. This is also the response from the Tacoma hospital. This makes no sense to us because Kiara had her radiation at Fred Hutch. They are now saying that their nursing staff isn’t trained to work with kids. Pretty ridiculous in my opinion. They do have a location for this trial opening in LA which will take her if we want to go that route. So, if we end up going out of town for a while, we will need to find someone to take care of our 2 cats. Ideally, we would find someone who would like to house sit and take care of the cats here. But if that’s not possible, we would hope to find someone who could take the cats at their house until we’re back in town. So, if you know of anyone who might be interested in helping us out, please let me know. Our cats are Mango and Tangerine. They are brother and sister and turned 2 years old last July. They are indoor cats. Mango is social, loves to go to the door when someone comes by, but he only accepts affection on his terms. He likes to chase mice on strings, chase bugs, and be goofy. Tangerine, also known as Tan-gee, is more cautious, an observer. She likes to watch TV with us, and allows Victoria to hold her in all sorts of weird positions. She’s sweet and talkative and will hop on my lap. They haven’t been around other cats, and have had mixed experiences with dogs that have come in our house. Thank you for reading all of this. Thank you for your many ways of support. We appreciate each and every one of you. Take care, Jen

From Jen 10-25-26 PART 1: Hi Everyone, It’s time for another update. Sorry if some groups are getting more posts than others; just depends on how much energy I have to be able to get them to all of the sites. This is quite a long post; I don’t have a lot of time to write so trying to put everything in when I can. Every day has become a roller coaster ride of emotions. I wish we had as many good days as not, it certainly doesn’t feel balanced. Kiara ended 5 days of radiation on Oct. 6 and it has just knocked her down energy wise. She has been so exhausted, the kind of exhaustion where sleep doesn’t help. I hear this can go on for weeks, if not months. The radiation was to help with pain in her low back, left hip, left pelvis, and left knee. It has for the most part. But the day after she finished, the right leg started really hurting; she has a tumor in the muscles by the original site in her right fibula. It’s just weird how she didn’t have much pain in that leg, it was the strong leg while the left knee was hurting. Now, it’s very hard for her to put wait on it and causing walking issues. So, there really wasn’t a single day after radiation where she could enjoy the freedom of know pain. And then add the exhaustion on top of it. It’s hard to know if she’s just tired, or if there’s depression mixed in with it, or what exactly is going on. I know she’s voiced recently the feeling of isolation from her friends, her school, her “normal” life. She’s only seen a couple of friends over the past 3 months, except for going into her middle school to have lunch at the end of September. I think she just doesn’t know what to talk about; she’s missing the shared experiences of her piers, and they can’t understand what she’s going through. Only about 250 kids a year are diagnosed with Ewing Sarcoma. She hasn’t met anyone her age with the same condition. I’m trying to reach out online to see if there’s someone out there going through the same thing. I may have found someone who’s 16 years old in Missouri who might be interested in reaching out. I think the isolation is probably something that those going through a serious illness face along with their loved ones. I know that I’m having a very hard time. The only peace I feel is when I am sleeping. Doing “normal” things that I usually enjoy, have little joy now. I feel like I have nothing else to talk about accept her medical condition and the things we’re looking in to to try to help. I don’t know how to relate to the world around me right now. Little things that seemed important before, just don’t matter as much. And this is really hard because we still have Victoria who is trying to have a normal life, going to school, wanting to have playdates, and go to the park, and do all of the things an 8 year old wants to do. Kiara was supposed to start her next round of chemo on Oct. 15, but her blood counts have been too low, probably do to radiation. We will try again tomorrow. I’m just worried because this is the longest she hasn’t had chemo since she started treatments back in Dec. I do want to mention that she did have a good day on Thursday. For whatever reason, she woke up in the morning, and didn’t say she was tired! She actually wanted to get up at 9:30 am., and come down stairs. She said she wasn’t in much pain all day. We went to the hospital to check on chemo, and she engaged with the hospital staff. We went to the Fred Meyer’s afterwards, and she drove around one of the electric carts. The cart’s battery died, and she walked a little bit at the store, more than she’s walked in awhile. She just sounded like herself that day. That night, she opened a surprise present from aunt Sil; an autographed book by Dana Terace, creator of her favorite show “The Owl House.” Sil had us send a picture of Kiara in her “Owl House” shirt, and she also brought that to the book signing in Los Angeles. Dana signed Kiara’s picture, the book, and made a short video for her. Kiara was so excited to receive all of this. She had found out about Dana’s book coming out several months ago and preordered it. I had promised her that we would go to the book signing in CA because she was supposed to be done with treatment. I was sad I couldn’t make that happen this time, but greatful to Sil for going in her place. The interesting thing about Thursday is that I know that Sil’s friends in Brazil were having a healing ceremony for Kiara that day, and that a couple of churches in Seattle were actively praying for her that day; plus everyone elses prayers and healing wishes. Did all of this healing energy directed at her that day help her have a good day? I think so. I wish this could happen every day. The other thing that’s been going on is our crazy ventures into the medical trial world. We’ve been trying to figure out how to navigate this world, but it seems to be like the “wild west.” We have been trying to get her into a trial called Steap 1. It’s located in 8 hospitals in the US. We told our doctor at the end of August that we would go to any of the locations but our preference would be LA because we have family there. He started asking at Cedars Sinai if they had openings. Their trial was on hold for some sort of review, and their process is that you have to have a second opinion appointment with them before you can get on their waiting list. To get this second opinion, our doctors had to send all of her records. Then we had to do hours of paperwork rewriting everything that is in her records. Then the records team from Cedars had to call us for a meeting. Then they sent more paperwork. After that was filled out, we got to have a phone consultation with a nurse to go over her records. Then it got passed on to the doctors team for review. A couple of weeks later we got to set up the appointment for our virtual appointment which is for this upcoming Tuesday. This process took over 7 weeks! It’s maddening how slow the medical world moves when you have an aggressive disease. So 2 weeks ago, I was online and saw a post that the Steap 1 trial was open again. We were so excited! It was on a Sunday, so we called the hospital to get a message to Kiara’s doctor to let him know. Then we looked up the government site to see all the locations of the trial so we could contact them. It listed the locations, but not the contact info. It said to call the drug company sponsoring the trial. We had to wait until the next day. We called and they only had contact info for 3 of the sites. They said they normally only give out the info for 2 sites so everyone can have an opportunity to contact a place, but since we only had the 3 options, they gave us all 3. In writing to these hospitals, it became obvious that the info was incorrect or out of date. We had to try to track down trial coordinators in other ways. Then it became apparent that each hospital does things in different ways. Some you have to have a second opinion before they’ll put you on their wait list. Some you can do virtually, some you have to do in person. Others will put you on their list, and then if you get called, you can do the second opinion. Others won’t talk to you because your insurance is from out of state. You have to register as a patient at each institution, getting a My Chart account for each place. I was also getting mixed info saying that there was a national list for the trial, and other places said we could get on their list.

From Jen: 10/11/26 Hi all, it's been a roller coaster of emotions this weekend. But the good news is that we found out that the Steap 1B trial we would like to get into is now open again. I saw a post about it today which made it sound like it opened this weekend, not exactly sure when. So trying to navigate the process of seeing if we can get her into one of the eight locations in the country hosting this trial. There are two in Los Angeles that would be our top choice, but it's also being held in New York City, Boston, Philadelphia, Baltimore, Houston. and one other city, I can't remember. So if you are inclined, please send a prayer that we can get theinto one of the ones in Los Angeles. There is also another trial going on in many cities around the country, but also here in Seattle that we are looking into as a second choice. I actually have a contact whose husband is working for the drug company sponsoring the trial. I have spoken to him until one of his partners, and we were ready to move forward on that trial when I found out that the one in California had opened up. Anyway, so hopefully this means there are possibilities of getting into something soon. Thank you for your continued support! It means the world.

From Jen: Update 10-6-26 Hi Everyone, Just wanted to write an update on the last couple of weeks. Kiara started a new type of chemo 2 weeks ago. Like the others, it’s given every 3 weeks. She is receiving a drug called Trabectedin, which is derived from Caribbean sea squirts, along with Irinotecan which was part of her previous chemo regiment. The doctors had sent some of her cancer cells to Fred Hutch for them to do something called Smart Match. This test puts the cancer cells up against different chemo drugs in the lab to see what will work against them. We were excited to learn that these 2 drugs were the top 2 on her list. We also found out that the first 14 rounds of chemo had 4 out of 5 drugs that did not score very well against the cancer cells. I wish they had done this test at the beginning of treatment. We are uncertain how this last round went. She was in a lot less pain for about 5 days, but then it started to come back last Wednesday. This has been the pattern with the last 3 chemo rounds, she’s out of pain while actively getting the chemo, and for maybe a day or 2 after it ends, and then it comes back. Last Wednesday, she also started a 5 day round of radiation which she just finished today. She’s absolutely wiped out! She’s upset that all she wants to do is sleep. Last week, we also met with the naturopath oncologist, in person this time. We talked about starting Mistletoe injections to help her immune system. This is used a lot in some countries in Europe. We had to order the medicine from Germany, and still waiting for it to arrive. Tonight, we signed up with a pediatric cancer specialist in Wisconsin who practices the Metabolic Approach to cancer. She has written the book called “A Parents’ Guide to Childhood Cancer.” We will meet with her virtually, and hopefully get some new suggestions and ideas. We are still waiting on trials and getting second opinions. It baffles me why it takes so long to get things moving in the medical world. When Kiara was first diagnosed, everything moved so fast, now that we don’t have time to waste, it seems like things take forever. For example, we’ve been trying to get a second opinion from a doctor in CA. From the time our doctors sent her records to them, til we actually get to meet with them, will be at least 7 weeks. It’s a multi step process which seems like it could be much more patient friendly. St. Jude’s has reviewed her case, and has asked for some of her cells to test to see if she qualifies for one of their trials. No idea when we’ll find out the answer. Last week during chemo, and before radiation started, Kiara felt good enough to go to choir and into school to have lunch with some of her friends. We also popped into a Bratwurst Festival at our local church, and when swimming up at my sister’s pool. She has been enjoying food, and looks forward to feeling well enough to go out and doing things again. Thank you all for your continued support. Your donations are helping us to be able to pay for medical care not covered by our insurance, and to pay the household expenses. Your meals are keeping us fed when we are too tired to cook. We appreciate you.

From Jen: 9-18-26 Hi Everyone, A very heavy week. Hell is seeing your child go through uncontrollable pain and feel like there’s nothing you can do to make it better. You try, and you try, and nothing seems to work. You both shed many tears; tears for the pain, tears for the sadness, tears for the many unspoken emotions. This week we got back some of the genetic information we’ve been waiting on for the past month. It shows that Kiara has a very rare combination of cell mutations which are making the tumors very aggressive. She also did another round of scans and they show that the last 2 rounds of chemo have helped in a few areas, but in other spots there is more cancer growth. She is in pain most of the time. There are some days that the pain is much better, and we’re not sure why. And just when we get used to it being better, it shifts again and becomes much worse. We are doing consultations and second opinion appointments with doctors across the country. Right now we are waiting to hear what St. Jude’s had to say about her case. Today, we just paid for a second opinion with a doctor who runs a trial down at Cedars-Cinai in LA. Tonight, Kiara wanted to go to the Bratwurst Festival in Walangford. She had seen signs for it on the drive to Children’s Hospital. We thought there wouldn’t be that many people on a Friday night, but it was so crowded, loud, and overwhelming. Because of her pain, we’ve been bringing her places in a wheel chair. I guess we stayed too long, because she ended up in so much pain by the time we got home. However, she ate really well, which was good to see because She hasn’t been eating much maybe because of the pain or because of some of the medicines she’s on. We are feeling down, tired, emotionally drained, like all of the colors have been washed away and we’re just seeing baige. And yet, we keep trying, keep looking for something that can help her. We thank you for all of the many ways you have shown and offered your support. It allows us to be with Kiara through all of her hospital appointments, treatments, and through the shared time at home. Thank you for your donations, meals, emails, texts, walks, check-ins, yard help, etc. We’re sorry we can’t thank each of you individually, but know that we are greatful and that we appreciate you.

From Jen and Ken: 8-27-26 Hi Everyone, This has been a roller coaster kind of month. So many lows with a few better moments. We are back in the hospital with Kiara do to another infection; the second one this month. She started a new chemo regiment on Aug. 13 and radiation on Aug. 14 to address some tumors on her spine causing pain. She has had a lot of pain, not only in her back, but in her left knee and shoulder. We were feeling good because the pain got under control a couple of weeks ago, and she was feeling good for about a week. They wanted us to taper down the meds, and by last weekend we were near the end of the taper, and the pain came roaring back. This week has been about getting it under control again, then she spiked a fever Tuesday night, and had to come into the hospital. We are hoping she can come home on Friday or Saturday. Her aunt has bought us tickets to go see “Harry Potter and the Cursed Child” at the Paramount, so we’re really hoping she’s well enough to go to it. She’s really been looking forward to it. I feel so bad that there’s been several things we have planned to do, and we keep having to cancel or change them because of her health. Today, we met on Zoom with a local naturopath oncologist, looking for new ideas and a different perspective. I was also able to connect with a renowned Ewing sarcoma doctor at the Cleveland Clinic, who will meet with us on Zoom next Tuesday. Our doctors at Seattle Children’s and the naturopath are also looking into clinical trials for us. We are waiting on the results from some genetic testing. She will finish radiation next week, and start the second round of the new chemo. After that, they will do another round of scans to see if the treatments are helping. Our emotions are all over the board. This week, we’ve been getting very little sleep, and feeling very stressed. I’ve been talking to people in Facebook Ewing support groups, speaking to 3 of them on the phone, listening to their stories and recommendations. I’ve started watching a new documentary series called, "Cancer Unraveled”; trying to learn as much as I can and feeling very confused and overwhelmed in the process. Just wishing for some clarity on what path to take moving forward. I stopped working on Aug. 3, the day of her last scans. This has been really hard for me because I usually find peace and stress relief in working with my clients; focusing on their issues instead of ours. I’m hoping I can take some massage clients on our slower days just to bring a little bit of normalcy back into my world. I feel so sedentary sitting around at the hospital. We want to thank you so much for your support of our family. As we look into new options, we are finding that many of them are not covered by our insurance. Your gifts are helping us to move forward and be able to pay for these appointments and possible new medications / supplements. With much gratitude, Jen and family