There's Never A Bad Day, Just Bad Moments

There have been so many emotions surrounding this recent move to Seattle. Ashtyn is bummed to be away from home, hurt that many things aren't going the way she wanted, determined to get cancer free, terrified to do another bone marrow transplant, and on and on. She faced yesterday with calmness and strength as she felt overwhelming stress. 

March 6th Ashtyn and I spent the day at the cancer and blood disorder center at Seattle Children's Hospital. For four hours we sat in a board room while individuals on the high risk leukemia team arrived at scheduled times to introduce themselves and go over their plan of care. During the majority of the discussions, Ashtyn slept on a gurney bed that was brought into the room by her amazing nurse coordinator.  We talked with the oncologist, bone marrow transplant physician, research nurses, nurse practitioners, pharmacy, palliative care, social worker, and dietician. Everyone was extremely friendly and warm which was comforting and made our day pleasant.  Ashtyn ended the day with a bone marrow aspirate procedure before we headed to the hotel. We were informed that a room at Ronald McDonald House had become available.  I packed up our suitcases at the hotel while Ashtyn slept, drove to RMH where she fell back asleep in our new room while I had an hour orientation of the RMH and unpacked our suitcases. By 8:00 p.m. I was still unpacking our large suitcases so I could pack our small suitcases for a four night stay in the hospital the following day. A stressed, extremely irritated emotion hit me out of nowhere. I wanted to get everything done and couldn't. It was then that I started thinking about two women from Seattle who had reached out to help me. Sophie offered to come decorate Ashtyn's room. How did she know we would be depressed walking into our bare room with no ability to make it feel like home? Cheryl insisted the day before to let her help us. How did she know I would walk into RMH with no food or ability to go to the grocery store? The thoughtfulness of those women and the kind messages I read on social media was all I needed to quickly get over the complete frustrations I felt and was able to end the night FaceTime reading to my 11 year old, writing my 18 year old an email, texting "goodnight" to my 15 year old, and watching the Bachelor with my 17 year old. 

Today we are heading to the hospital to stay four nights. If anyone would be willing to send mail to Ashtyn at the RMH our address is:

Ashtyn Poulsen room 383

5130 40th Ave NE

Seattle WA 98105

Arrived In Seattle

I woke up with a heavy heart, which has become common most mornings. Once the day gets going and my focus turns to people in my life, that heaviness tends to lighten and peace comes. Ashtyn woke up nauseated and feeling all around yucky. Her dad Jason and step-mom Natalie drove us to the airport. Ethan skipped school to come with us because no matter what, family and people are always more important than any task. Ashtyn fell asleep the moment she boarded the plane and didn't wake up until we were landing. Dana, a wonderful woman we had never met before, picked us up from the airport. We loaded our four large suitcases, one full of blankets, one with Ashtyn's clothes, one with my clothes (more clothes than we'll ever need but who knows what we'll be in the mood for), and one suitcase with toiletries and medical supplies.  We also had two carry-on suitcases of personal stuff we wanted to bring. Most certainly we over packed. After stopping somewhere for lunch, we drove to the Ronald McDonald House which is currently full, and got information about the possibility of getting a room there in the coming days. Dana then dropped us off at the hotel, got us settled into our room, and left us with snacks, drinks, and hugs. How grateful we are to Dana for sacrificing her afternoon for us. Several people in Seattle have reached out and we are so grateful for them. We definitely don't feel alone and are comforted to know we have some wonderful locals to turn to. Ashtyn got in bed around 3:00 p.m. and has been sleeping for the past four hours. That's cancer for you. I am totally pumped for treatment to start and let the destroying of cancer cells begin.

Leaving On A Jet Plane

Our bags are almost packed and getting ready to fly to Seattle in 12 hours for Ashtyn to start cancer treatment at Seattle Children's Hospital. It's been probably two months since she literally relapsed and almost three weeks since we found out. It is becoming more and more apparent that leukemia cells are taking over her blood stream. The coloring of her face is beginning to look pale and gray, endurance is becoming less and less, and she generally doesn't feel good. Even though she is nervous and doesn't want to go to Seattle, we are ready and happy to start treatment soon.  While her doctors have spent the last 2 1/2 weeks getting everything in place for her to start the study medication, our days have been full with events. We've gone to Las Vegas, had my son's farewell and Eagle Scout court of honor, and dropped Chandler off at the MTC for his two year mission. Morgan got her Patriarchal Blessing and has had cheer competitions. Ethan had parent teacher conference, time with friends, and hockey games. Ashtyn hosted a Leukemia & Lymphoma fundraising campaign party, completed all required tasks to run for Student Body President, and had several hospital visits for tests and procedure. We've also been able to enjoy extended family parties and quite a few get-togethers with friends. It's difficult for me to put into words how uplifting it is to have support, love, and prayers from all of you. It reminds me of what participants in marathon's, ironman's, or the likes must feel. I think it would be extremely difficult to push through a race without support from those cheering from the side line or receiving help from pacers and water stations. Similarly, I feel like the support we are getting is truly sustaining us. I credit not only God for our peace and strength but also Ashtyn's Army. Thank you.

And So It Begins

This update is a medical update as opposed to the previous update which was more about how Ashtyn is doing mentally and emotionally. 

On Tuesday February 27th, Ashtyn, Jason her dad, and I joined a conference call with oncologists, bone marrow transplant physicians, nurse practitioners, a social worker, and others on the High Risk Leukemia team at Seattle Children’s Hospital along with her oncologist here at Primary Children’s Dr. Luke Maese.  We discussed the plans made for moving forward with the clinical study trial treatment that Ashtyn is being enrolled in.  These are the basic facts.

Our insurance company has approved the clinical study.  Ashtyn and I will be flying to Seattle on Monday March 5th and will take an Uber ride to either Ronald McDonald House or, if no vacancies, check into a hotel nearby.  Tuesday will be a full day where we will meet quite a few members of her health care team at Seattle Children’s Hospital. Ashtyn will get lab work done, possibly a platelet transfusion, a bone marrow aspirate and lumbar puncture procedure, and an anti fungal medication infusion. Wednesday we will go back to the hospital and be admitted to a room where fluids will be given and preparations made for her to receive the study drug the following day.  Thursday she will receive the study drug Venetoclax and then again daily for the next 21 days. The first five days will be spent in the hospital and then, as long as she tolerates the medication, she’ll be discharged from the hospital and settle in at the Ronald McDonald House.  The 2 1/2 weeks following will be spent at the Ronald McDonald House (and possibly site seeing around Seattle), and going to the hospital clinic once a week for lab work and an assessment.  Once the 21 days is complete, a bone marrow aspirate will be done to discover what effects Venetoclax had on her leukemia cells and immediately start another 21 days of Venetoclax adding an additional chemotherapy drug. After another 21 days of treatment, a bone marrow aspirate will be done again to determine how her leukemia cells respond, and repeat another 21 days adjusting chemotherapy as needed with the hope that zero leukemia cells will be found in her aspirate within a few months. Once there is zero evidence of leukemia cells, we will move forward with another bone marrow transplant to rid the cancer for good. 

Yesterday we went to Primary Children’s Hospital.  With a low platelet count of 23, she received two platelet transfusions before she was put under anesthesia where a PICC (peripherally inserted central catheter) line, which she will have for several months, was threaded from her arm into a large vein in her heart. A lumbar puncture aspirate to check how many leukemia cells are in her spinal fluid was also done and chemotherapy was injected into her spinal fluid. Currently Ashtyn is on one antiviral, two antibiotics, and an anti fungal medication to help prevent illness or infection.   Please pray that all will go well during the next few days allowing Ashtyn to make it to Seattle healthy and able to participate in the study.

Two platelet transfusions before surgery.

Waiting Room

Done with her central line placement,

lumbar puncture, and chemo into the spinal fluid

Step Aside Cancer

Ashtyn continues to feel remarkably healthy, so much so that she was asked by a peer, “Are you sure you have cancer or did you hear the doctor wrong?” We are extremely grateful that, although her bone morrow is over 70% leukemia cells, she is physically staying strong while we wait for treatment to start.  Because leukemia cells are taking over, she has very few good white blood cells, which puts her at risk for getting sick so she has chosen not to go to school other than her 5th period seminary class.  On Monday February 26th she came home more angry than I’ve ever seen her.  From the time she was in 9th grade, she wanted to run for Student Body President for her senior year, and elections are in a couple of weeks. “I’m so over this cancer crap!!! Is it really too much to ask to be able to run for Student Body President just like everyone else?! You don’t understand! I have to be here!!! It’s impossible for me to run if I am in Seattle!”  My advice was to follow her heart.  If she felt to run for President, she should go for it.  If she felt it wasn’t the right thing, then she should let it go.  Ashtyn was so upset she got in bed to sleep the disappointment away.  

It was not only disappointment of not being able to run for Student Body President, it was everything.  She has so many good plans.  The same week we found out cancer was back, Ashtyn was actively applying and getting references to volunteer in June at Camp Hobe, a summer camp for cancer kids and their siblings.  She was also in the final steps of submitting all her paperwork so she could start volunteering at Primary Children’s Hospital the following week with Kids Crew where she could comfort and entertain children who are staying at the hospital.  Her Leukemia & Lymphoma Society Campaign, raising money for blood cancer research from March 7th until April 28th, kicks off with an event in one week where all Student of the Year candidates will be introduced. There is also Junior Prom she absolutely wants to go to, ACT’s she was planning on taking, and was on track to graduate from high school with her class in one year with the help of her counselor who recently worked out a tight school schedule to get it all done. Our good friend Nicole happened to stop by soon after Ashtyn escaped to her bed, and took her and Morgan shopping to get comfortable, cute clothes. It was perfect timing and gave Ashtyn a chance to forget her worries and redirect her focus elsewhere.

Tuesday February 27th I happened to be at Brighton High School talking to Morgan’s teachers and decided to stop in to see the teacher who mentors Student Government so I could understand the facts. Ashtyn was also in the building being interviewed for yearbook and joined our conversation.  We talked about the desire she has to run for President and the concerns others may have not knowing if she’ll be able to fulfill her responsibilities.  With more confidence and determination than I’ve ever seen in anyone, Ashtyn announced, “I am going to run for Student Body President.  I will make the campaign posters this week and record a video of my skit for the election assembly that I will miss while in Seattle. I will be here next year.  I’m so done with cancer and will get rid of it quickly.  I Will Be Here Next Year.”   I love the fight in her. I love her determined focus. I told her teacher, "Ashtyn has a way of beating the odds, so much so that I think doctors and scientists even believe in her. If she says she's going to be here next year, she'll be here."

It's All Coming Together

Shortly after I posted the last update I was informed that our insurance company needs to approve the clinical study before heading to Seattle. Dr Maese definitely has his work cut out for him. He not only has to work with the insurance company but is sifting through possibly hundreds of medical records, hand picking what needs to be sent to Seattle. Seems daunting and I'm glad I don't have to do it. Insurance will likely approve the study in about a week. Once doctors in Seattle are notified that the study has been approved by insurance we will be contacted and asked to fly to Seattle as soon as we can. In the meantime Ashtyn and I plan to pack and get ready so that we will be able to book flights at a moment's notice.

For now, we are grateful for the time we have to get organized and ready. I feel extremely scatterbrained and completely incapable of focusing on tasks. I'm thinking Ashtyn may feel the same way since her bedroom remains a mess and her suitcase is still empty. Our brains are maxed out. When push comes to shove I'm sure we'll get our suitcases packed and be ready. As we prep for Seattle, I have some ideas we would really love help with.

1. A friend of mine has set up a "Meal Train" account where people can sign up to bring my little family dinners while Ashtyn and I are gone. For those of you who are in the Cottonwood Heights Utah area, if you want to check it out that would be awesome. Heads up: We are not picky eaters and have zero allergies or preferences.
https://www.mealtrain.com/trains/0nl1wv

2. While in Seattle I've heard the hospital food is a challenge. The Ronald McDonald House where we will be staying provides a small fridge in our room with a large shared kitchen. Let's be honest, when I'm in my own home with not a struggle in the world, cooking tends to not be at the forefront of my thoughts or desires. I do want Ashtyn to eat good calories and not loss too much weight so the plan is to open up a "meal train" or "sign up genius" account for people in the Seattle area once we are there. That would also be a fun way to meet people!

3. When Ashtyn was diagnosed with cancer in 2013, a ashtynsarmy.com website was started but is too complicated for me to deal with. When she relapsed in 2016 I updated everyone simply by posting on Facebook. With this third diagnosis I really want to compile all her posts from the last five years onto one site I can manage called ashtynsarmy.blogspot.com  Are there any computer geniuses out there who can give me direction on this large undertaking? In the meantime I will be posting updates on the blogspot page for those who prefer blogs over Facebook. I may even get around to making the blog organized and cool.

If you could share this post to get the word out, that would be great.

The fact that her leukemia cells aren't currently growing and dividing at a much faster rate is a miracle to me. Ashtyn's new marrow graft from her March 2017 transplant must be fighting off some of her leukemia cells giving us this breathing room. There is much to be grateful for.

Be Ready To Be Amazed

An email I just sent my son Chandler:

Well, I think my day might have been almost as busy as yours. I'll give you the run down.

Ashtyn and I met with her doctors this morning. This is basically what they said to Ashtyn, "In all these years you have never qualified for a single clinical trial. Your leukemia cells do not have the characteristics and markers that typical leukemia cells have therefore it's completely rare. On November 11th 2017 a study was started that you qualify for using the drug Venetoclax and is being done in Seattle. Primary Children's Hospital will be conducting the same study but won't be starting for another month or two. We think you should go to Seattle, start the study drug, and once Salt Lake starts the trial, move back and continue the drug here. Now Ashtyn, this drug may never get you cancer free and might only buy you time but it's the treatment we feel best about. If the drug happens to get you cancer free then we will discuss, through the Bone Marrow Transplant team, what Bone Marrow procedure may work to keep you cancer free for good."

Ashtyn's response, "I am absolutely willing to do anything. I have more fight in me than I've ever had."

My response, "Since we are all on the same team, let's make sure we are all on the same page. Ashtyn has beat the odds before and there is no reason we should doubt she won't beat them again. Start thinking about what treatment is best when she gets cancer free and be ready to be amazed."

Miracles seen:
1. Her white blood cells, platelets, and red blood cells are currently kind of stable. The numbers are pretty much the same as before we went to Vegas which means the leukemia cells aren't taking over all the other cells at lightening speed giving us this time to get plans in order.
2. From day one, five years ago, doctors have always been concerned that Ashtyn didn't qualify for any clinical studies. What's the chances that no trial study has ever been available to Ashtyn until two months before her 3rd relapse?
3. How amazing it is that Primary Children's Hospital is conducting the study as well which means we don't have to be in Seattle as long.
4. Ashtyn currently has very few white blood cells but has not gotten sick at all. You even got sick a few days ago! She is currently healthier and stronger than the doctors would expect which is a great way to start.

Ashtyn and I will go to Seattle on Monday or Tuesday and possibly be there a month or two. Most of her time will be out of the hospital so we will be sleeping in an apartment at the Ronald McDonald House.It looks like as you are heading for an adventure, so are we.

We really are feeling calm, peace, and almost excited to get done what God wants us to do.

We love you. You are always with us as we are always with you and are grateful for you every day.

Love, Mom

P.S. I'm thinking it would be a good idea if I email your mission President about what's happening in your family just so he is aware. I feel good about that decision.

This team will do our best to get rid of cancer for good. 

Dr Luke Maise: Oncologist

Dr Michael Boyer: Bone Marrow Transplant physician

Ashtyn: Fighter

Mom: Avid Supporter

Showing the team videos of the not-so-real 

Micheal Jackson singing in Vegas like he was.

Ashtyn wishes she could take Luke with her to

Seattle.  He is not only her doctor but 

her most trusted rock. The love is real.

Feeling the love from our BFF nurse Shannon and 

our know-all and amazing nurse practitioner Hilary.

Ashtyn thinks the hardest part of being in Seattle

will be not having her hospital family there.

These women have been her nurses for 5 years.  

There is no love stronger than the love we have for nurses. 

Group Hug

You got this!

Dr Doug's her buddy.