We Take The Good, We Take The Bad

The last post I wrote was about all the good that is happening, but today I want to write about some of the hard realities of cancer.  

Saturday night Ashtyn said to me, “Mom, I have a high tolerance for physical pain but currently I don’t have any tolerance for emotional pain. I know how important it is for me to have a good attitude and to be mentally strong to fight this, but I don’t have much emotional strength left. I’m not happy and haven’t been for a really long time. I just want to be happy. I’m tired of missing out on everything. I’m tired of not being able to do the things I want to do. Right when I thought things were going to go my way I got knocked down again. All I wanted was to volunteer at Primary Children’s Hospital, volunteer at Camp Hobe, run for Student Body President, spend time with my friends, and have a great senior year. I’m sick of things not going my way. I don’t see any light at the end of the tunnel. It’s difficult to fight when I don’t know how long the fight is. It’s like I'm running a race not knowing where the finish line will be. I need to know that something good is around the corner.” Sunday night she broke down again. "I want to stop this treatment. I want to go home!" Physically her body is depleted of healthy blood cells and she is feeling completely worn down. Emotionally she is depleted and feeling completely destitute. She is aware of all the things she is missing out on. She can picture what she’d be doing at home and in school if it weren’t for cancer.  With each passing day, she knows there will be more and more of a disconnect with friends and family, more and more lost opportunities, and more and more experiences she’ll miss out on. Her dreams of what she’s always wanted to do Junior and Senior year have been destroyed leaving her with very little immediate things to fight for. As her peers are moving on with relationships, classes, and activities she is left behind, again.

Sunday, as she was dealing with the inner physical and emotional depletion, she and I went to the hospital at 8:00 a.m. for a complete blood count lab draw requested by her doctor. While Morgan and Ethan slept, we waited in clinic for an hour for the results to come back showing that her red blood cells were 25 (normal is 35-44.5 and a transfusion is done at 22), and her platelets were 23 (normal is 150-450 and a transfusion is needed at 10). Her white blood cells were 0.6 (normal is 3.6-10.5 . There’s nothing you can do for low white blood cells but stay away from crowds and do what you can to not get sick). She was borderline needing transfusions and was told to come back Tuesday to check again.  We walked into the Ronald McDonald House around 10:30 a.m. where there was donuts at the front desk dropped off by the firefighter paramedics who had come six nights prior when I called 911. Ashtyn and I both took a nap while Morgan and Ethan hung out quietly in the room. At 2:30 p.m. I woke Ashtyn up to drink her Venetoclax and thought it would be a good idea to go for a drive. We drove past Fremont Troll which was about 20 minutes away and stopped at Gas Works Park on our way back. The sun was out and the weather was beautiful. We got out of the car to walk into the park but after walking only a few feet, Ashtyn felt horrible and wasn’t able to go any further. She laid down in the back seat of the car while Morgan, Ethan, and I sat in the park looking at the breathtaking view of the lake and downtown Seattle. After a short time, we headed back to the Ronald McDonald House where Ashtyn slept the rest of the day and night.  

I realize that some of these posts are filled with hope and gratitude, and yet others are highlighting how hard this trial is. I think of myself as an optimist realist because I believe good and bad go hand in hand in every situation. That belief doesn't diminish the fact that difficult times exist. It also doesn't diminish my belief that good will come making the heartache more bearable. Our life tends to be a mix of blessings and heartache, and my goal with these posts is to be honest and open about what we are experiencing. My hope is that when I explain her challenges with complete honesty it allows each of you to find ways you can help her, even if distance limits your help to prayers and positive thoughts sent her way. These are difficult times and we are trying to hold on to the fact that it won't last forever. She just needs to be lifted up right now.

Please continue keeping Ashtyn in your prayers that she will 1. become cancer free asap. 2. feel renewed emotional strength and happiness that will sustain her through the long road ahead.

http://events.lls.org/ut/saltlakesoy2018/aPoulsen

These pictures show the reality of what cancer 

looks like when siblings visit for the weekend and

Ashtyn doesn't have it in her to enjoy is. 

Good Seems To Always Outweigh The Bad

Today I want to talk about all the good that is happening and how spoiled I feel. We came to Seattle almost two weeks ago not knowing anyone, and we have since been surrounded by support that I can't adequately explain. Every single healthcare worker at Seattle Children's Hospital have wrapped their arms around us with complete competence and care while locals have made us feel loved and supported. I've received texts and messages wondering what we need, how we are doing, and if there is any site seeing we'd like to do. These "strangers" have brought us gift bags, food, drinks, snacks, and dinners. They have made cards, sent letters, and visited us. In Utah we have family, friends, and neighbors who are rallying around my kids and holding down the fort. Meals are being brought four days a week. Morgan has rides to and from school as well as to cheer and any other activity she wants to do. Ethan is being fed breakfast in the morning by a neighbor and is being watched over by his dad, stepmom & stepdad, teacher, grandparents, aunts, uncles, and friends in the area. In the meantime, in Seattle we check our mailbox daily where Ashtyn is receiving letters from home and elsewhere. The good we are experiencing is definitely outweighing the bad. I hope the love continues because I feel we can never get too much support. 

I've heard rumors that this country is falling apart and evil is running rampant. I don't see it. Of course there are horrible things happening but I am confident that good and decent people outnumber the bad by a long shot. How do I express heartfelt gratitude to all of you who are changing our life for the better and making this journey so much more bearable? Ashtyn and I really do feel a passion to pay it forward. That's why her Leukemia & Lymphoma Society fundraising campaign means so much to us. As our life is being changed by the goodness of others, we want to give back by spreading awareness on how life changing cancer research is. If everyone who has been walking this journey with us could donate $25 and share her cause with 25 people they know, Ashtyn could meet her fundraising goal. She would then be able to put that money into a research portfolio of her choosing, which of course would involve pediatric cancer. I hope you all can feel my sincere gratitude for what you have individually done for us whether tangible or having us in your thoughts and prayers.  Thank you.

http://events.lls.org/ut/saltlakesoy2018/aPoulsen

Morgan and Ethan are visiting us in Seattle for a few days!!! We love the energy they bring. Even though Chandler is in Florida and about as far away from us as he can be in the contiguous US, we feel his uplifting strength

This is a picture of my family with Kylee and her family Friday night in Seattle. Two weeks ago Kylee was a stranger who reached out asking if she could help me and Ashtyn. She lives in Seattle and took it upon herself to gather supplies she thought we'd need for our Ronald McDonald room and came by to visit. She even went to Costco and printed 90 pictures of friends and family that Ashtyn could put on her wall. Throughout the week we texted back and forth keeping in touch. Friday she organized her day around us by driving in one hour traffic to pick Ashtyn and me up to take us through another hour of traffic to the airport. She then sat in her car and ordered Cafe Rio while Ash and I went to the gate to pick up Morgan and Ethan. We then went to Kylee's mother in law Micci's house for dinner and was given one of her cars to borrow while my kids are in town. So generous and so thoughtful! The entire time Ashtyn thought I had known Kylee for years. I now have a forever friend who I'm so grateful to have met.

One year ago at Primary Children's Hospital celebrating Saint Patrick's day with nurses Mitch and Irish while she recovered from her second bone marrow transplant.

The Ins and Outs

Here are the basic, as concise as possible, ins and outs of what Ashtyn is doing in Seattle. A pharmaceutical company believes they have an anti-cancer drug called Venetoclax which hopefully makes leukemia cells more susceptible to chemotherapy and easier to destroy. This would allow Ashtyn to go into remission and receive a 3rd, yet different, bone marrow transplant. The drug is currently on the very first phase of the clinical trial which means there are few participants, Ashtyn being one of two currently receiving it in Seattle. The goal for a phase one trial is to discover how much of the drug is safe to give, what the side effects are, how the body copes with the drug, and if the treatment helps destroy cancer cells. Ashtyn qualifies for the study because she relapsed twice and has had all other treatments available. 

Everyday either a pharmacist or I, depending on if she's inpatient or outpatient, dissolves 20 Venetoclax pills in 100 ml of apple juice. After about 15 minutes of shaking and swishing the cup around, the pills dissolve leaving a dark yellow, cloudy liquid with foam. The 100 ml is then put into two 60 ml syringes. 20 ml of fresh apple juice is places in the cup to capture the residue which is then put into another syringe, and an addition 20 ml of apple juice is places in the cup to get all remaining medication into a fourth syringe. Ashtyn then places one syringe in her mouth at a time and drinks the liquid medication as fast as she can. Study based blood lab work have been done frequently to gather data. 

Here is a verbal picture of what's been going on the past 24 hours. We got to the Ronald McDonald House Wednesday around 4:00 p.m. after being hospitalized for a seizure. (She is now on an anti-seizure med because her EEG showed some abnormal activity.) At 9:00 a.m.Thursday morning she had a scheduled clinic visit at the hospital. Blood labs were drawn, her central line dressing was changed, we talked with her awesome high risk oncology doctor, went under anesthesia for a lumbar puncture and intrathecal chemotherapy, and was given IV fluids. Once awake she downed her 140 ml of the nasty tasting Venetoclax. She then had to get study blood labs drawn from her central line every two hours for eight hour. She waited out the time by sleeping and hanging out on a gurney bed in a small exam room for a total of 11 1/2 hours at the hospital before heading back to the RMH. Tomorrow we'll go back to the hospital for more lab work to monitor her rising liver enzymes.  Prayers are always so appreciated that 1. This drug will be effective in getting her into remission asap. 2. Her liver and other organs will stay healthy enabling her to continue taking Venetoclax. 3. Her body will stay free from illness and infection. 

http://events.lls.org/ut/saltlakesoy2018/aPoulsen

20 Venetoclax pills a day

Weekly lumbar punctures to monitor leukemia in her 

spinal fluid and receive intrathecal chemotherapy.

The Burden Seems Lighter Than It Should

After Monday nights dramatic event where Ashtyn became unresponsive and was transported to the ER, the following day was spent sleeping and having procedures. She had a CT scan to check for bleeding in her brain, EEG to check electrical activity of her brain, MRI to check for infection, EKG to check her heart, and blood lab work to check electrolytes among other things. Every test came back normal so we likely will get out of the hospital without knowing what happened. The day also included two platelet transfusions and was wheeled to the hospital dentist to get her braces off decreasing the risk for infection. If you could watch a live video of Ashtyn and me going about the day, I think you'd be bored. With a CT scan, she simply lays on the table as it moves her under the scan and back out. She then gets off the table and is wheeled back to her room. An EEG was done in her bed as she slept through her head being wrapped with wires and 30 minutes of monitoring. While laying in an MRI machine, which sounds like 40 minutes of a loud construction zone with on and off jackhammering, Ashtyn simply watched Finding Nemo as if laying down in a one-man tube movie theatre. Some may think we've been fighting this fight so long, nothing phases us anymore. There is some truth to that combined with a trust in Christ that has allowed Him to "ease the burdens which are put upon our shoulders, that even we cannot feel them upon our backs." Thank you for your prayers of strength and health. We are being watched over. (At the end of each post during the next month, I will add Ashtyn's Leukemia & Lymphoma Society donation site and ask that you please donate whatever small amount you can because we all know by small things, great things happen. Cancer research is lifesaving so let's save some lives! http://events.lls.org/ut/saltlakesoy2018/aPoulsen )

There Are Angels Among Us

28 hours after leaving the hospital, Ashtyn and I felt settled in our Ronald McDonald room. Everything was unpacked and organized, the room was decorated and cozy, and we felt rested after taking it easy all day. We were honestly excited to have a couple boring, lazy weeks at the RMH. At 8:30 p.m. we FaceTimed Ethan and told him plane tickets had been purchased for him and Morgan to visit us on Friday. We said goodnight to him, ate dinner at 9:30 p.m. and were ready at 10:30 p.m. to film a one minute introduction video for her Student Body President election that is coming up in three days. As she prepared the song for the video I went to the restroom for 30 seconds and came back to find her laying on her back in the bed completely unconscious. I shook her a little, calling her name, and found that she was unresponsive with droll on the side of her mouth; a scenario I had never experienced before. I asked for angels to come help while I rushed to the phone and called 911. As the paramedics were on their way, I stayed with Ashtyn as she slowly came to. She looked completely dazed when I asked her, "Do you know who I am." She had no clue. Several minutes later she began to cry, "I want to go home!" "Where's home?" I asked. "Salt Lake." To double check her alertness I asked, "What's your dogs name?" "Marlie" she replied. When the paramedics arrived she had no idea why they were even there. As I explained that she probably had a seizure she panicked, "I don't want to die!" By that point I felt calm and looked her in the eyes. "Ashtyn, look at me. I'm not nervous. You're going to be ok." She was placed on a gurney bed, wheeled to the ambulance, and taken to the ER at Seattle Children's Hospital. Lab work, CT of her head, and an EKG were done. Nothing came back concerning. At 3:30 a.m. she was admitted to a hospital room on the cancer floor for observation and further testing. It is now 4:00 a.m. We will try to get a few hours of sleep before her room fills with day staff. Sometime today we may have some answers as to why she had a seizure or we may never know. This is where we roll with the punches having faith in God's plan and in the prayers being said for her.

She's An Angel

It's been almost one week since Ashtyn and I have been in Seattle. Time always goes by fast but it seems like we've been here forever. The last four days in the hospital have had the usual constant interactions with one healthcare provider or another. For the most part, Ashtyn feels overall fluish with nausea, body aches, and extreme fatigue. Each day she seems more and more run down. Her body is clearly being rocked because she sleeps probably 20 hours a day. She has received two blood transfusions, two platelet transfusions, quite a few medications, and a couple procedures. Everything is going as planned without major bumps in the road so we get to leave the hospital today. It's an empty feeling packing up knowing we aren't going home. One of the most difficult realities of fighting cancer is missing out on all the things we would otherwise be doing. Ashtyn is really missing out not being around for school, the Student Body President election, staying connected with people, family gatherings, hanging out with friends, sleeping in her room with her dog, and being in her home with her siblings. Morgan (15) and Ethan (11) are missing out not having their mom to send them off to school and be there when they get home. They miss out not having Ashtyn there doing things with them that she normally would do. There is no way to replace those missed opportunities but the kindness of individuals in Seattle, the goodness of those in Salt Lake, and the many others who are supporting us has made all the difference. You may wonder what it's like to be with Ashtyn 24/7. You won't be surprised to hear that it's like being with the sweetest, most tender, calm, peaceful, agreeable angel.  She is constantly tired and feels bad that she sleeps all day. Ashtyn doesn't want me to be lonely and even though I reassure her that I'm not, she can't help but be concerned. When watching TV she always makes sure that what's on is something I want to watch too. Even though it clearly doesn't matter to me what we watch, she can't help but to be thoughtful. She's an angel and I feel it a complete privilege to be at her side as she fights this cancer battle. 

For A Good Cause

My name is Ashtyn. I am 17 years old and from Salt Lake City, Utah.  Five years ago, on January 30th 2013, I was shocked to learn I had a rare, high risk cancer called "Acute Undifferentiated Leukemia."  After four months of treatment, I was able to get into remission and received a bone marrow transplant.  After being healthy for 3 1/2 years, the cancer returned on October 9th 2016.  After another five months of treatment, I was cancer free again and went through a different type of bone marrow transplant that I was sure would prevent cancer from coming back again.  In November 2017, I was nominated as a candidate for The Leukemia & Lymphoma Society’s (LLS) Students of the Year Campaign.  It was a chance for me to give back to a cause that had saved my life.  Later, on February 14th 2018, less than a month before my campaign was to begin, I was devastated and terrified to find out I have relapsed again.  I am now in Seattle participating in a phase 1 clinical study of a medication called Venetoclax with hopes that it will get me into remission, giving me a chance at a third different type of bone marrow transplant to rid my body of leukemia for good.  At the same time I am receiving the study drug and participating in cancer research, I am still working to raise money through LLS to help cure cancer.  My campaign runs for seven weeks, from March 7th- April 28th 2018.  I have another long road ahead of me with the understanding that this is my last chance to beat cancer.  I have high hopes that I will beat the odds and survive knowing that statistically my prognosis is slim.  My wish is that in years to come, people won’t have to worry about losing their lives to this horrible disease. I have decided to raise money for the Leukemia & Lymphoma Society in honor of all of my friends who have either beat cancer, are currently fighting, or have lost their battle.  I cannot do this alone, I need your help.

I am writing to ask you to support my campaign through a corporate sponsorship or a normal donation of any amount.  Corporate Sponsorships for Students of the Year start at $3500 and offer benefits at the Grand Finale Gala on Saturday, April 28th at The Marriott at University Park.  Sponsorship also adds to my team’s total and helps me compete for the title of Student of the Year. 

LLS’s work is changing the lives of 1.2 million Americans living with a blood cancer.  In addition, the treatments that LLS is funding also benefit all cancer patients because more than 40% of new cancer treatment drugs approved by the FDA since 2004 started as blood cancer drugs. I’m also excited to raise money knowing LLS gives 77% of all donations to services that directly help patients and further research. Please consider donating to this amazing cause at http://events.lls.org/ut/saltlakesoy2018/aPoulsen  Any amount is greatly appreciated. Please please please donate and share this post to help me meet my goal. 

(This is a picture of me in November 2017)