Hello, October!

 It's been a minute!

Since our last update, Owen completed phase 3, or 'Interim Maintenance I' with success! We thought it was going to be a difficult phase just with the nature of it, but it was honestly the easiest one so far...Relatively speaking, of course.. I'm not the one getting the chemo! Owen did well though and didn't really get sick, just annoyed at being in the hospital for 5-6 days at a time. We were a bit spoiled and were able to spend some time at home this phase - the longest stint being for 17 days since starting this Leukemia journey. My mom (shout out to Mom!) hung out with Owen during the day so Mike and I could continue to work, and we are so appreciative of the help and the peace that was able to bring. Now, we are back to reality with being in Denver for appointments and holding onto hope that his ANC stays high enough for us all to spend time together on weekends. Delayed Intensification, our current phase, is about 8 weeks long. The first month is like the first phase, the second month like the second phase, so things we've experienced and know what to expect. We are slowly moving closer to Maintenance, the envied phase that will allow us to be home 90% of the time with oral chemos and short trips to Denver each month. 

That 'Maintenance' phase was planned to start in mid/late January, but on Monday, we learned that it would be pushed back about 2 months for good reason. In a recent clinical trial, a medication called Blinatumomab was used in patients with B-ALL leukemia. The medication helps the body use its own immune system to fight the cancer cells and was found to increase positive outcomes at 3 years post treatment by 8%, which is significant. Because of the overwhelming success, the clinical trial was shut down and the medication is now part of regular treatment for B-ALL leukemia. They are going to squeeze two doses of the medication in for Owen - the first of which after this current phase, which ends the first week of December. After that, he'll go into Interim Maintenance II, then have another dose of the med before going into Maintenance. The not so great part of blinatumomab is that it is a 28-day continuous med that will go through Owen's port. We will have to stay in Denver for the entirety of the medication to be sure he is close to medical care if the pump stops working and to change the bag out/change access dressing out each week. While I am so excited for Owen to get this medication, especially with the fact that it addresses our biggest concern, its a bit daunting to know we are facing another 2 months apart as a family.

We are incredibly blessed but right now, we are heartbroken. It SUCKS to be so far apart. It sucks to watch my youngest son get poked and prodded a few days a week and for him to be so sick with nothing I can do to help. It sucks to hear him talk about missing his brothers or whatever parent is not with him. It sucks to hear the older boys worry about his safety and miss the normalcy of us all being together. We were so close to maintenance, we could almost taste it. Even as I left for Denver this last week, Mike and I talked that it's hard, but only 2ish months left and we'd all be together again. We were on the home stretch, and now it almost seems out of reach. What sucks even more is that we're not even the ones with cancer. My heart breaks for Owen every day. By the end this initial part of treatment, this will have been a fifth of his life. That's not fair. I wish everyday that I could take this from him, but the cold hard truth is that I can't, and no one can. He is so brave, so strong and he keeps fighting, so we do too. I hope he rings that cancer free bell so hard it breaks in August 2026. If he can do this, we can too.

Here's a picture of Owen and Olive when he was able to be home for a bit. He misses his pups just about as much as his brothers sometimes!

The Catch Up

 The Catch Up.

Dearest gentle reader,

Kidding. Anyone catch Bridgeton Season 3?! 

That's a whole other conversation. We're here to talk about a different kind of love story; a love story for our sweet, brave, sassy Owen.

Last time I was able to sit and write an update, we were just moving into phase 2 of treatment. Now, here we are, nearly 2 month later, hoping to move into phase 3 next week. This Summer, Mike has been spending most of his time in Colorado with Owen while I work and save my PTO as much as possible so we can continue to support Owen while also..ya know, feeding our other kids. Our older boys have been with me and hanging out with Mallory again. I appreciated Mallory so much when my kids were babies, and now that they're older, I appreciate and love her even more. She's a pretty wonderful person and though Ben and Luke are louder and rowdier than they were as infants and toddlers, I know they're still loved just as much. Its a difficult balance, but we're doing ok. Its nice to have a bit of distraction and normalcy with work, but there's also the guilt associated with working when my baby is miles away going through something I can't begin to completely understand. Appointments are long and frequent and Mike has had to comfort Owen through most of them this summer, which is a job in itself both physically and emotionally. Your continued prayers and well wishes don't go unnoticed as we navigate through all of this. 

In a big picture sense, Owen is handling his treatment well. He doesn't get too sick on the medications and he is so much more himself now than he was even the month before he was diagnosed. We don't have to hold his hand to help him to the bathroom and he is able to run and play with his brothers with an occasional break. He's still sassy as ever, but puts up with his nurses without too many swats and even smiles at appointments once in a while!

On the not so fun side of things, Owen had a pretty severe allergic reaction to a type of chemo called Cal-Peg at the beginning of June. This med is pretty common for allergic reactions, but they generally try to push through and finish the med if the reaction is just hives. Owen unfortunately had hives, swollen eyes and throat, and an increased and sporadic heart rate among other things that landed him in the hospital for the night to make sure he was ok. Due to the severity of the reaction, it was decided he would need to get the medication a different way. Unfortunately, that different way is a series of 6 big shots to the leg over the course of 2 weeks. Not only did he have to do this then, but he's had to have this series 3 times so far. That means at least 3 appointments a week for two weeks that last at least 4 hours a piece. On top of these visits, there is another chemo med that is given through his port that he takes 4 days a week also 3 times throughout this phase. Generally, the nurses teach the parent how to do it and it can be given at home. Our insurance only covered it if it was done in the hospital, and of course it happens to fall in our off weeks of shots. The no real break for Owen (and for Mike) has definitely worn on him, but we're doing ok overall. Owen's least favorite part of the appointments are his port being accessed on Monday and de-accessed on Friday. Its not so much the needle as the big sticker that's put over the needle to keep it in place and clean. Taking that sticker off is a major source of stress for him and the nurses are constantly trying to do things to help him through it. They are wonderful. Seriously. Every single nurse in the outpatient center have been literal angels. Haley, Sonja, Amanda, and Gayle all deserve a special space in heaven..Or at least like a really big, delicious coffee. They're the absolute best! 

Next week we are hoping to move into phase 3 which looks a bit different than the last two. If Owen passes, phase 3 will have a week on, week off set-up that will hopefully allow us to be home in Gillette more. He'll have a week at a time where he is admitted to the hospital to get a high dose of a med on Monday, then be monitored and flushed with fluids for the rest of the week, followed by a week off, repeated 4 times I believe. We're ready for some time at home for sure, but it does sound like a pretty hairy med, so please keep Owen in your prayers that everything goes smooth. Remember how in phase 2 we talked about the bone marrow biopsy being good, but not as good as we would have liked? Since his marrow wasn't quite what the doctors were hoping for, he will have another marrow biopsy done at the beginning of phase 3 to check if he has leukemia in his marrow. We are of course hoping for a clean result, but not without a bunch of fear and anxiety surrounding that biopsy. The genetic make-up of Owen's leukemia cells makes it a bit more stubborn and more likely to come back compared to other B-ALL leukemias. Please pray that the result is clear and if not, that the doctors will have the guidance to help our son be happy and healthy well into old age. In the mean time, enjoy this little video of Owen painting :)

Phase Two!

Onto phase 2!

Last week, Owen had an appointment to go over the results of his bone marrow biopsy that happened the week prior (day 29). Overall, we received positive news - there was no leukemia found in the marrow! The fine print to that was that there wasn't a lot of 'good stuff' in the marrow either - Our doctors described Owen's situation best with comparing it with a flowerbed. When you have a flowerbed with weeds and you spray on stuff to kill the weeds, the flowers die too. You know the weed killer has done its job when the flowers grow back, but not the weeds. While we didn't have a ton of flowers, there was also no weeds either at the time of the biopsy, and that was the most important part of induction. Owen's platelets and other numbers continue to go up on their own though, and that tells us he has some healthy marrow in his body! There are a few things that have to happen to move to consolidation (phase 2), and Owen passed on most of those things. He had the blood numbers he needed (platelets and hemoglobin) and there was no leukemia in the marrow, but his ANC (immune system) was still a little low. His doctor was confident that it would get to where it needed to be by the end of the week, so we planned to start Thursday. While they were getting Owen's next batch of Chemo ordered and ready, they ran into a snag with our insurance that delayed a med out till Monday..Our doctor shrugged that off and said, "how do you feel about going home to Wyoming for a few days?" ..we of course jumped at that chance!

The last few days have been absolutely wonderful, spending time together as a family in our own home for the first time in over a month! Our apartment in Denver was beginning to feel more like home since its been the only place the 5 of us have been together over the last month. We celebrated Mike's Masters graduation and Mother's day this morning..all together, as it should be! 

If I learn nothing else from this experience, I hope I learn to not take for granted how truly blessed I am. I have the best husband/partner and best kids in the world. With all this going on, I live for those moments when all three kids are fighting about some seemingly dumb game like who shot who in Fortnite. I want the fights and the laughter that follows because that comes with being together. I have a family who loves and cheers for us and we have an entire community there to support us along this journey. I hope I remember to love like my kid has leukemia. 

Owen and I made the trek back to Denver and we'll head to the hospital bright and early tomorrow morning for day 1 of Consolidation. Consolidation lasts 8 weeks and at the end, Owen will do another bone marrow biopsy to check to make sure there is still no leukemia. He, technically speaking, is in remission. Its 'little r' remission and not 'big R' Remission, but we'll take it! Owen has been so much more himself lately and its been so great for all of us! Here's hoping he continues to handle the chemo well and his body works to keep the leukemia away. He's the bravest, strongest person I know and really truly an inspiration to me and Mike. 

Day 29

First off, get yourself a sister like mine. Quick little shout out to Melissa, Owen's fearless aunt, who took time to not only build this website, but design shirts and mugs and everything in between for it too! Off-line, she's my go-to kid watcher, tortoise feeder, and cat finder at a moment's notice. Thank you, Birk family - You're pretty darn spectacular. 

What a (insert expletive) month. 

On Easter, while I was working to prepare dinner for mine and my sister's family, Owen got a bloody nose. Normally, a bloody nose is no big deal, but the week prior, we were in the ER with a bloody nose that lasted over 3 hours. This one seemed to be tracking to be similar, so Michael made a walk in clinic appointment for an hour later, hoping we wouldn't need it and having the safety net if we did. Oh boy did we need it.

Owen and I were ushered back to the room shortly after arriving at the hospital and I told the doctor my concerns - that, on top of the nose bleed, Owen was lethargic the last couple weeks and needed several naps throughout the day- something that, if you know Owen, was completely out of character. I was concerned he had strep or some sort of cold causing him to just feel icky. The doctor listened - something I thank God for everyday. Our walk-in clinic doctor listened and quite possibly saved Owen's life. He took my concerns and ran a hemoglobin test that showed Owen needed a blood transfusion, maybe more. We were moved over to the ER and while they were running all the needed tests to make sure the blood would be safe for Owen, they discovered something more. Maybe the ER nurse told me what he had then, maybe it was just the 'blood infection' that I swear I heard, but before I knew it, I was calling Mike, telling him to get me an overnight bag together and ask my sister to take the kids for a bit while things are figured out, he was already a few steps ahead of me when I called. Mike brought my bag and shortly after, I was getting into the back of an ambulance with Owen to head to the airport. On the flight, Owen got platelets which helped the nose bleed clot, over 6 hours after it started. He started the blood transfusion while I furiously googled different blood infections and asked my sister about family history of things since she was well versed in stressing about a child's health. Once we landed and were taken to Rocky Mountain Hospital for Children and the overnight doctor told me that we would find out what type of Leukemia Owen had in the morning. Leukemia. My baby, my sassy, adventurous and sure of himself baby, has cancer.

Mike was able to join us in Denver with his dad managing the older boys so we could face this all together. In the coming days, Owen would receive around the clock care to address all the things that he was fighting through. On top of, and also due to, the cancer, Owen was given care for his rhinovirus and strep and a few issues with some of his organs that were working so hard to keep him safe. Chemo started on that Tuesday and the oncology and picu doctors walked us through each test and concern that came up. If you have to have a sick kid, Rocky Mountain Hospital for Children is top notch. Seriously. Everyone, including the sanitation staff, were and continue to be so wonderful.  

I think the first few days I was just numb and in disbelief. Honestly, even a month in, I sometimes feel like that. This isn't supposed to be something that happens to normal people, it happens in movies or "Walk to Remember" type books people read in middle school. The harsh reality is that this is real life..too real, and its something we will be living for a while. I can't thank the people in our life enough for all the support and prayers that came our way in those early days and still today. If I haven't said it to you already, thank you. The support and offers to help in some type of way are wonderfully overwhelming and it makes this mountain that we have to climb a bit more bearable. Our parents and families, our jobs (shout out to my boss!), CDS (Mr. Clint!), our friends, Kara for being a superstar of all things, Mallory for caring for our older boys so I can continue to work, organizations that have helped us navigate this all, people venoming us to help with care and living life in two different states...There's too many people and acts of kindness to list. We are truly blessed. We've made it to day 29 of treatment, which is the end of his first phase of chemo. We find out next week where we're at and where we're headed. Prayers are appreciated as we sit and wait once again for news. Owen has a long road ahead of him, but my hope is that he is just stubborn enough to get it done. 

When Mike taught kindergarten, he would read 'Oh the Places You'll Go' to his students before they moved onto first grade. There's a line in that book that he mentioned:

"You will come to a place where the streets are not marked. Some windows are lighted, but mostly they're darked."

Thank you for being the light in Owen's windows. You are all so incredibly appreciated and I don't think there is anything we could ever do or say to express how thankful we are for your support and love through it all, but we will continue to try.

Movie Night and Silent Auction Benefit

 Come support Owen Dragseth, 3-year-old son of Mike and Angela Dragseth, in his fight against leukemia! We will be showing Star Wars: Episode 1 - The Phantom Menace in the gym starting at 6:00pm. We will have a silent auction and some items being raffled off in the commons from 5:00-7:30pm. Concessions will be available for a free will donation. 100% of the proceeds from this event will go directly to the Dragseths. Please come join us for an evening of fun that goes to a wonderful cause!

Go Poke Leukemia in the Nose

This is my nephew, Owen. He likes Teenage Mutant Ninja Turtles, Mario Kart, and eating Doritos. To date, he is the only Dragseth boy Emma has been able to dress up like a girl successfully. He refers to Tron as "Twon," and I once saw him stick his finger in our yellow lab's nose so hard that the dog was not seen for the rest of the night. Owen is pretty special to us, and we are thinking about his parents, Mike and Angela Dragseth, these days as he is in Denver fighting Leukemia.

We put this site together to help keep friends and family updated as Owen is in Denver receiving treatment and cheer this sweet family on during this tough time.

And Owen, go poke Leukemia in the nose real hard for us all.