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.

I'm Not Unbreakable

Yesterday we hugged Chandler goodbye as he begins his two year mission. My sister in-law Nanette sent me a text. I particularly appreciated her telling me, "I am sure the way you feel on the inside isn't always reflected on the outside." My sister Alisa texted me a quote and then explained, "I know you will continue to cope lightly and deeply, not letting the quicksand suck you down into fear, self-pity, and despair. If the quicksand does get you, I know you will not linger there. You will fight your way out and I am here to help you with that fight." It's true. I'm not unbreakable and am as human as the next person. At times I feel fear, self-pity, and despair but the key has been to not linger and instead redirect focus on the positives. No doubt there is positives in every situation but sometimes you just have to look at things from a different angle. I try every day to be strong, positive, and confident because I want my kids to be strong, positive, and confident. I know if I have faith, optimism, and courage my kids will have faith, optimism, and courage which in turn gives me faith, optimism, and courage which gives them the same and on it goes. Today we are meeting with doctors to discuss cancer treatment options. Ashtyn has been especially anxious waiting a week to find out what the plan will be for her. At this point we truly do trust God completely and are relying on His tender mercies as well as the support of all of you.

Missionary

This young man is an official missionary for the Church of Jesus Christ of Latter Day Saints. On Wednesday February 14th, Chandler was in our living room when Ashtyn found out cancer had returned. She was devastated and sobbed, "I'm going to die while Chandler's on his mission!!!" He had an immediate calm and straight forward response, "You're not going to die when I'm on my mission." Chandler is not a stranger to hard times and through it all has stayed true to his optimistic, faithful, level headed personality. Never does he shy away from difficulties but instead presses forward with steadfast and courageous determination. Going on a mission was an easy decision for him based on his belief that it's the right thing to do. It was also a very difficult decision because personally he would prefer staying in the comfort of his own home. Because of Ashtyn's diagnosis, I am more grateful than ever for his willingness to serve and sacrifice and Chandler has found even more of a purpose and readiness to go. We believe that sacrificing what we want for a greater good brings immense blessings and we look forward to what's in store. I really think we'll be amazed. Though we would love to have Chandler home, we absolutely need him on his mission more. My heart will hurt with that final hug tomorrow but my heart will also have more courage to face the future as he is serving God. 

If you ever want to email Chandler, he would really appreciate it: chandler.poulsen@myldsmail.net
Please message me your email if you would like to receive his weekly email.

Life Balances Itself Out

The day after finding out Ashtyn relapsed we left for Las Vegas, a get-away we do each President's Day weekend planned around a yearly cheer competition Morgan performs in. It was perfect timing this year because it gave us time and space to process the news. It's not easy coming to grips with the reality that cancer is back. Ashtyn, Morgan, and I flew home yesterday from Las Vegas while the rest of the family stayed one more day. Chandler wanted to watch his favorite team, the Anaheim Ducks, play one more hockey game before heading on his mission and they happened to play the Vegas Golden Knights Monday night. I originally had planned to watch the game with my boys and drive home Tuesday while Ashtyn and Morgan flew home Monday for school but with Ashtyn's lack of white blood cells and platelets, I thought it would be best to miss the game and stick with the girls. Speaking of low white blood cells and platelets, right now you would never guess Ashtyn is sick by just looking at her. We have been grateful that she has remained healthy while we wrap up this week. With close to zero white blood cells, the cells responsible for fighting infections, she is definitely more susceptible to getting sick. We have put that fact on the back burner and have been greatly blessed with good health. Her platelet count, cells that help clot blood, is also quite low. I would bet she's near the range of needing a platelet transfusion but her cells are staying steady for the moment, allowing us this time to not only send Chandler off on his mission but to also gear up for the fight in front of us. 

Yesterday was also my birthday, a day I tend to reflect on the year prior. My 42nd year was colorful and eventful starting off with Ashtyn being cancer free, stayed in the hospital 50 days straight for a second bone marrow transplant, and while she was recovering traveled a lot as I felt that was the right thing to do. I'm now looking to the year ahead of me knowing I will be fighting cancer along side Ashtyn, writing letters to Chandler who will be in Orlando, and supporting Morgan and Ethan as they learn more life lessons. Through the years I have noticed that life has a way of balancing itself out and I certainly feel ahead on the blessed scale. Even though my 43rd year is sure to be full of ups and downs, it seems the good has always outweighed the bad so I don't suspect this year will be any different.