Adalynn the Cancer Destroyer (2025)

20/08/2022

First off…welcome! I wanted to have a place where I could go back and read all the updates on Adalynn’s journey fighting leukemia so I put all the past posts there in case you feel like scrolling. We just wanted to have a place to share with everyone who has been there for our family whether we know you or not. So many people are out there hoping and praying for us and we are so grateful for the support we have been shown.

Adalynn is doing pretty well on Blinatumomab again. She is almost done with the 28 days and we are all glad about that. Mostly she just gets tired some of the time, but her lab numbers are pretty good, which helps. She eats too, which is nice because some of those chemos make her want to avoid all food.

This week her sister Jessica started school and this was supposed to be Adalynn’s kindergarten year. We could have pushed for it and sent her but she can’t really attend in person until January. And even then, who knows what life will look like. It is hard. I wish I could send her and she could be a normal kid, who goes to school and plays with friends and who gets worried about thunder. I hate that she asks often if she has to go to the doctor; that she won’t tell us when she is hurting or not feeling well because she’s afraid she will have to go to the hospital or take more medicine; that she worries if people will like her because she has cancer, that doing what she has to do hurts her and scares her; and that cancer messes up even her school schedule in life. But I’m grateful we are moving forward and I’m grateful for my brave girl who keeps going every day.

20/08/2022

July 31

This week Andrew and I have been teaching the girls about Esther. It was the lesson we were studying at church and it worked so well because Adalynn has been so brave these last seven months. Jessica too has to be brave in a different way.

Today as we walked home from church I was asking Adalynn about her lesson on Esther. I asked if Esther was scared or brave to see if she remembered the story and Adalynn’s answer was that she was scared and brave. Teaching win for the five year old. Aren’t we all like Esther? Trying to be brave but still a little scared, unsure and worried about life. People tell me lately that I’m so strong or such an amazing parent, but really, I’m just like all of you; trying to do my best and face the unknown.

I read this quote at the hospital and feel like it applies so well. “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”

Go be brave this week. And remember, if you weren’t today, you can try again tomorrow.

20/08/2022

July 29

Leukemia treatments are divided up by so many different phases. Each one has set procedures, medications and timelines. Adalynn is part of a study for a new medication which adds two different phases and that is where we are right now. She’s got her backpack again with Blinatumomab. It’s our favorite medication name because it sounds so funny.

Blina has its ups and downs and comes with a fair amount of hard times, but she feels well on it so overall it feels like a break. We travel to an infusion clinic twice a week to get her new meds hooked up, do labs, and deaccess and reaccess her port. She is hooked up for 24 hours a day for 28 days straight. Because we go to another clinic we don’t have to travel to salt lake for a month and it feels so nice to have a break!

One of the chemotherapy meds she has gotten frequently since treatment started causes some pain and neuropathy in her feet and ankles. While it can last for some patients, it usually goes away after treatment. To encourage it to go away and keep her muscles strengthened we’ve started doing physical therapy a few times a day throughout the week. I know it isn’t a lot to add, but at this point it kinda feels like one more hard thing. I’m hoping it gets easier for both of us as time goes on.

This phase was Adalynn’s last scheduled chemo admission to the hospital. She will still receive chemo and treatment through March of 2024, but it can be administered at her doctor’s office (clinic days), at home through home health nurses, and through pills. Does this mean we won’t be back in the hospital anymore? I wish. Any time she has a fever, even barely, we have to go to the ER, and it is hard to avoid fevers with a weak immune system. Her next phase (starting in September) is one that can be bad, lower immune system numbers, and make her feel sick. We are hoping her experience isn’t as horrible as we’ve heard it can be. But we are grateful to be moving forward and that each day we get closer and closer to finishing treatment.

20/08/2022

July 1

It has been awhile since we’ve updated mostly because there isn’t much of an update and also I’m a little worried I’ll just sound negative. So if you want details, keep reading. If not just know cancer is horrible and treatment is slow. Adalynn started this phase of treatment, Interim Maintenance 1, in April. It is supposed to be nine weeks long, but hers will be at least 15 weeks and possibly more. It is count dependent, which means if her platelet levels or ANC (basically if her immune system is too weak) are low then she can’t go in to get chemo. She has never been delayed in her treatments because of her levels until this phase (and that’s amazing) but I feel like we keep hitting delays and it feels hard.

This chemo has been hard on her and affected her health physically and more. Every week she has labs checked at home on Tuesday and we wait for results to find out if we are going to be admitted the next morning. And then of course I look at all the lab results and become Dr Google to try to understand what they all mean. I feel like this round has involved a lot of worrying and waiting.

She has one more round of methotrexate and this one will be done normally, without desensitization. The doctors and all of us are hoping it works without any type of reaction. And then we finally move on to the next phase (the backpack again). We are looking forward to getting past this stage!

20/08/2022

May 26

It worked!! Adalynn was able to receive the chemo she needed. She is just finishing the 24 hour infusion and she didn’t get sick or have a reaction. We are so grateful for all your prayers and good thoughts sent our way.

She and I have been here since Tuesday afternoon and it feels like it’s been a week, but we are grateful things went smoothly. We will get to head home in a few days when the chemo clears her system and then do it again in two more weeks.

Thank you all for your love and support!!

20/08/2022

May 21

This week, we had a scheduled visit to the hospital for Adalynn. But unfortunately, things didn’t go as planned. We are really asking for prayers and good thoughts sent her way. On Wednesday, Adalynn had a possible reaction to the chemo she was receiving. She’s reacted to one before, but this was a different type. It is rare to react to and her symptoms were also different than expected, so they aren’t totally sure what happened, but they will treat it is a reaction.

After her system was cleared from the chemo, we were able to come home. We will go back Tuesday to try again with some special precautions in place. This chemo is really important and used in different forms throughout the process of treatment so we really need this to work and for her to be okay when she receives it. We would love to have you pray specifically for her to be able to take this medication and not react to it. Prayers for the doctors that they will know what to do to help and what course is best for her. We would also appreciate any prayers for our family to be strengthened and feel at peace. Thanks for your prayers and good thoughts sent our way…they all mean so much.

Right now Andrew are going to focus on our family for the few days we have together so please understand that we can’t comment or reply to everyone, but we appreciate your support.

20/08/2022

April 14

Guess who finished her first month of Blinatumomab? We just went up to drop off her backpack and medicine pump last night and it felt so nice to get her into the car without having to take the backpack off, and to let her sleep without something plugged in. Tonight she gets to take her first real bath in a month! She’s feeling great right now and this month really has been a nice break from our new normal. I actually took her to the grocery store a few times; she hasn’t been since November. I feel like this is one of the first times in months where she felt good enough each day to be a kid and we didn’t have to think about cancer every second of every day. And, we didn’t have to go to Primary Children’s at all for a month…that is amazing!

Next Wednesday, we start the next phase, Interim Maintenance 1 and it will be a little less fun. It is nine weeks and she will be admitted to the hospital for at least 4 days every other week. I’ll admit that I’m already not looking forward to it and what it means for our family. Hoping she responds well and I’m hoping I can remember to take it one day at a time.

20/08/2022

March 20

Amazingly, Adalynn’s lab numbers were just barely high enough to have her bone marrow aspiration two weeks ago, so she had that done on the 9th. We found out results on Tuesday the 15th and it was good news: her cancer is gone! (Disclaimer: this is according to the test and what was collected, there is most likely still some minimal cancer in her.) We also found out she would be admitted the following day, Wednesday the 16th, to start a medicine called Blinatumomab and that day would start the two year countdown for treatment, so she will finish March 16, 2024!

This medication is administered through her port every day for 28 days. She has a pump and bag of Blina with a huge tube in a backpack and she gets to carry it everywhere; she even sleeps by it. We will go to South Jordan twice a week to get a new bag of medicine; once a week she will have labs checked and deaccess and reaccess her port. She’s involved in a study and we have heard so many great things about this medication so we were hoping she’d be picked for it and we are grateful she was.

We were told fevers can happen when starting Blina in about a third of the patients and of course, she fell into that range. I was so excited for her to start this but by Thursday evening I felt horrible that we had signed her up for this study. She had a fever of 103-105 all day even with Tylenol and was miserable. She threw up a bit in the morning and had a hard time keeping down the Tylenol. She hardly drank (but was hooked up to fluids) and didn’t eat anything all day until late evening when she ate 4 crackers. Because she had a fever they had to draw labs but since the Blina was going through her port they had to do an IV in her hand. It hurt and it’s so hard to get enough blood there for the labs they wanted. That was hard and her hand still hurts where that IV was. That night I was grateful for the IV though because they used it to give her tylenol at night, but at her 3 am dose her IV needle had popped out and she had to have it by mouth, which is hard for her. And of course she decided to not fall asleep again after that so we had a long day. Hospitals are horrible for sleeping. But that 3 am fever was her last and she dropped to the 99s which meant we got to come home. She got her back pack hooked up and we were discharged Friday at 6:30 pm.

The backpack of Blina is kind of tricky for a busy girl like Adalynn but she’s doing really well. Sometimes people have problems with tubing breaking, bleeding at the port, or leaking bags and we are really hoping to not have those problems. They say usually lab numbers are good and kids generally feel well on this so we are hoping to move through this month smoothly. Her lab numbers are usually okay. She seems to be able to jump back quickly, which is great. She hasn’t had to pause treatment at all for low labs. Her platelets were less than 16K just three weeks ago and now they are actually higher than normal range (150-400K) at 500K. Her hemoglobin is up to 10, it jumped up so much after two weeks of no chemo and she didn’t need a blood transfusion.

I’m tired. Andrew is getting better and better at braiding Jessica’s hair. We are all sick of cancer and doing the best we can, which isn’t always great, but we wake up every day and keep going. We are grateful for those who have brought meals or ginger ale when Andrew was sick, and also our secret friends who brought us some fun surprises for St. Patrick’s day. Thank you for your prayers and support and for donating blood. You’re still doing that, right? If you are, you can search on the Red Cross app for the team Adalynn’s Army. Join it so we can keep track of how many lives are being helped because of you!

20/08/2022

March 2

Do you remember our last update? Adalynn had a bad reaction to a chemo called PEG. The alternative is an injection called Rylaze. Each time she would get PEG, she will get 8 doses of Rylaze over a two week period. Monday, Wednesday and Friday we have to go to get the injections, wait for an hour then go home. Today was our last dose for this round. The shots and medicine hurts and her legs are covered in bruises and hurt. It's been a rough two weeks but I'm glad it is done.

Her hemoglobin is low but she still seems to have enough energy, and it went up slightly so we are just hoping it keeps going back up. But her ANC is 0. She has no neutrophils, which is what we all need to fight infections. Last week she was at 1000, which is still low but I was hopeful it would stay up. She will have labs drawn Tuesday but most likely her numbers will be too low to check her bone marrow next week so we are hopeful it will happen on the 16th. In some ways, a break from the hospital will be nice so I'm trying to focus on that instead of feeling frustrated with more waiting.

How am I doing? Man, some days are hard. I hate that we hit a milestone today and it doesn't feel awesome. She finished 8 injections of Rylaze and she is done with treatments for Consolidation. That should be big, but it's hard when I know the next few weeks will bring more hard things. More tears and screaming as she gets accessed and deaccessed again. Two weeks in a row of having to get anasthesia...she hates it and has been worrying about it for the last month (she's had a break for 4 or 5 weeks). More trauma. And after that we begin a new phase, one (which we hope she gets) includes her wearing a backpack with chemo in it all the time for a month. So, should I celebrate that we made it through the last two weeks and all those shots and that we are moving forward? Yes. But it is hard when I tell her she's finished with one phase, but there are many more.

I feel like with all that is going on in the world I should be grateful for many things: we are together as a family, we are safe and have food and a home, we have doctors who are fabulous and we only live an hour from the hospital (everywhere else we have lived would have been a much longer drive), and Adalynn is with us and has some energy. She's doing okay and sometimes we can take walks and bike rides and go enjoy the sun that's showing up. I know that we aren't alone. Today on the drive I had a talk with Heavenly Father and I was reminded again that I'm not alone. I know I have a Savior who is with me, and our family, and feels our pain and is so aware of us. And I am grateful, but it's still so hard and I wish I could just say please, take this cup from us...but we can't. So instead we just wake up each day, try to smile and laugh and add to our grateful bubblegum jar so we can try to keep our heads above the clouds.

Thanks for your friendship, prayers, thoughts and support. Thank you for your kindness.

20/08/2022

Feb 16

So many of you have asked how you can help our family or Adalynn and we have something you can do. Donate blood. Are you scared of needles? So is she, but she shows up every week to get a needle put in her body, so I know you can be brave too. You all know there is a shortage right now, right? But what does that really mean? Adalynn's hemoglobin levels are low right now, barely above the level needing a blood transfusion. By next week she will drop into that range, but she still has energy and she's doing okay so she most likely won't get a transfusion. Why? Because there is a shortage of blood and she's okay; other people are in need more so she will go without while she can. I'm not worried. I know if she needs it, she will get it and she has. But I kinda hate that the doctors have to withhold at times because of this shortage. So, donate blood. And then do it again when you can.

Looking for an update? She is doing well and not feeling very sick. We are grateful she hasn't had to be admitted to the hospital since December. We don't have much of an update, we are just kind of moving through treatment. She is supposed to have her cancer levels checked through her bone marrow in 2 weeks, but her counts for blood work are dropping so we may have to wait a few more weeks. I'll admit, I've been waiting for this day for 6 weeks and have been worried, so waiting longer is not what I wanted. I'm hoping her numbers can move up quickly so we can continue to move forward with treatment. At that point we will start the next phase and have a better idea of what the future will hold, but really, it holds some weekly visits, chemo, and medicine for the next many months.

Update…right after this was posted.

I'm never posting another update until we leave the hospital clinic. Just kidding about all going well. Adalynn had a reaction to some of the chemo she received today. This one can causes issues and the doctors and nurses were great, but it was scary for awhile and now we are hanging out here overnight. The good news is we caught it quickly and they knew exactly what to do...and she and I aren't driving home in this snow. And still, go donate blood.

20/08/2022

January 23

Recently I read about another family whose child had cancer and they said, "God is good. People are kind." This has stuck with me and it is so true. Thank you for being kind! We have been so blessed by many checking in, bringing meals or gifts, and praying for us. We are doing okay and for the next week or so life is a little easier. We only do one main medication four times a week and only have our clinic day, no more chemo at home for a little bit! Then we repeat another month of Consolidation and hope her cancer remaining is gone or at least less when we check again.

Adalynn has had some more energy and has started eating more this week, which is always a good thing. She told me today she sometimes feels nauseous but she hides it quite well because she doesn't like taking medications. It's so hard to see her feeling sick or hurting. She is strong, but I hate that she has to be. The hospital clinic days are long and we had one of the longest this last week. Started at 9 and ended at 5:30...and then we got to drive home. This Wednesday is her last lumbar puncture for at least a month and she is so glad. She doesn't like sleepy medicine (anasthesia).

We also want you to know if your kids know Adalynn please know that you can explain that she has leukemia and what that means. It is so hard to explain and understand; we get that. But because this is such a long process and will affect who she can see and also her appearance it would be great for other kids to know so they aren't afraid or worried if they see her in the neighborhood or in pictures. One thing that kids need to know is that leukemia is not contagious! I'll post a link to a short clip in the comments that is helpful.

We also have a few books if you are local. We bought some extras and may get more if there is a lot of interest so you can check them out for a few days or so. One may need some explanation from parents but it is so informative. Reach out if you are interested in borrowing them.

20/08/2022

January 10, 2022

I feel like I've been waiting to post an update until we had something positive to share but tonight I was reminded that life is full of ups and downs and we can't wait for the ups to be happy. So today, the positive things are that Adalynn could walk pretty well almost all day, she only had to take one type of medicine, had no borderline fevers and ate a little food!

Two weeks ago Adalynn had another bone marrow biopsy to check her leukemia levels. Ideally she would have no cancer left, but unfortunately that didn't happen. This means she is considered standard high risk now. About 25% of patients still have cancer after the first month, so we aren't alone, but it was still hard to hear. She will now have some higher and more intense chemo doses for the next 2+ months before we start the rest of treatment. This time of treatment is called Consolidation and fortunately we will be outpatient for chemo unless there are issues. Some of it will be pills, some through injection with a lumbar puncture, some through her port IV at the hospital for her clinic day and some through her port IV at home as well.

There have been some rough days: she hasn't been able to stand or walk some days, has hardly eaten some days, has a rash all over, and lately she can't fall asleep until 11 or 12 at night. But, we've also had some good days with more smiles and more energy, dancing to songs about Bruno, and we even found a horse close by to visit that she named Boltning.

Thanks for all of you who have brought meals, checked in, prayed and thought of us. We appreciate you all!

20/08/2022

December 11

We just wanted to thank everyone for your support. After we got home Saturday we had to have someone come check Adalynn's labs Monday and they sent us back to the ER at primary children's that night for high blood sugars. Adalynn now has steroid induced diabetes and has to check her blood sugar and have at least 5 shots a day. I know all about diabetes but I hate that she has to deal with this on top of all her medications, feeling crummy and chemo too. We used to store our daily vitamins and meds in one basket but we've now tripled our supplies in the last few weeks. She's doing as well as she can; I guess we all are. We are home again and hoping to stay home for awhile. Thank you for your love and support! We've had so many angels help clean our home, bring us meals, pray for us and drop off fun things. Thank you all so much!

20/08/2022

December 1, 2021

We wanted to give a brief update on our family. Our daughter Adalynn was diagnosed with Leukemia Tuesday night. She has ALL, which is the most common and most treated. We are at Primary Children’s and the doctors have been amazing and have reassured us that she can beat this, it will just take time. This has come at us fast and while we appreciate your love and support, we can’t respond individually to comments, messages and texts. We are pretty busy these days and learning as much as we can, so don’t be sad if we ignore you. If you are wondering how to help right now, we would appreciate your thoughts and/or prayers for our family.

Adalynn the Cancer Destroyer

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