She Believes

The word I naturally use to describe my kids relationship to one another is “tight”. They are super tight. From the moment each were born, time together was the norm. Seven months ago they were swimming in the Caribbean together unaware that one week later they would find out leukemia was back. One week after hearing that devastating news, Chandler hugged his siblings for the last time for two years and left on an LDS mission to serve people in Florida. Two weeks later Ashtyn and I left to Seattle to fight cancer. Life can definitely change quickly for the bad but can most certainly change quickly for the good. I’m looking forward to life changing quickly for the good where Ashtyn engrafts and we can go home. I’m also looking forward to when my four kids are together again. Until then, I’ll be grateful for this season. Chandler is a total home body... and really doesn’t like hot weather ha ha! I’m grateful for his love, dedication, sacrifice, and unselfishness to be in Florida serving others. I’m grateful for Ashtyn’s courage, faith, and patience to endure all that she does with hope for a healthy life. I’m grateful for Morgan who is staying true to herself where I don’t have to worry if she’s making good choices. I’m grateful for Ethan who, after his surroundings were suddenly without his mom, sister, and brother, he is learning that he too can do hard things. 

This afternoon Ashtyn woke up suddenly, asked for her phone, and wrote this down. “There’s a well known story in the Bible about a sick woman who believed she could be healed just by touching Jesus Christ. (Mark 5:25-34) She struggled with her health for a long twelve years, seeing doctors and doing everything she could to get better. Still, her condition only got worse. I can empathize with her frustration caused by being sick for so long and seeing little to no improvement. The fact that this woman believed there still could be a miracle for her amazes me. Jesus was walking with his disciples on a crowded street when she reached out and lightly touched His clothes. Immediately, she was healed. “Daughter, thy faith hath made thee whole; go in peace.” Sometimes I think about this story and wonder when He will make me whole. I have faith. I know a healthy life is possible for me.”

Three years ago. September 2015

7 months ago. February 2018

Goodbye to Chandler for a little while. 2/21/18

Ethan 8/7/2018

Morgan  8/17/2018

Mother Moment

BMT Day 36: I woke up today not getting my own way again with the news that white blood cells are still not seen in her blood counts. I decided I was going to have a good day regardless. The day seemed to be pleasantly uneventful with our really cool nurse Bri and awesome nurse-aid Megan. Ash had the appearance of not being in a very good mood but didn’t complain much that she wasn’t allowed to drink all day while waiting for the bone marrow aspirate and biopsy that didn’t ended up happening until 6:30 p.m.. By 8:00 p.m. the procedure was done, we were back in our room, and she still looked gloomy. I had to pipe up. “Ash, you can’t be in a bad mood all the time.” She responded, “I’m not.” I pointed out, “You haven’t been yourself in awhile. I get that you don’t feel well. I understand this sucks. It’s hard and all you want to do is go home. It’s healthy to feel those emotions for a time but then turn your focus on the good. Notice the tender mercies and miracles that happen everyday. Look! You don’t need oxygen! Awesome! Notice, you aren’t nauseated and pain isn’t too bad! Wonderful! Appreciate that you can drink anything you want right now. Finally! You have the strength to get out of bed every couple hours to use the bedside commode. Remarkable!! Your central line infection looks so much better where it doesn’t have to be pulled! There are miracles and tender mercies every single day. Expect them, keep your eyes open to recognize them, and then be grateful.” I ended my “mother moment” and she ordered a chocolate shake, lemonade, and hot chocolate from room service. Her vibe totally changed and we watched “Peter Pan” while she enjoyed her drinks.  Btw: I am AMAZED she hasn’t thrown up the chocolate shake yet and it’s been 3 hours since she drank it! Today was a good day. 

Each day I tend to ask for specific prayers. I think it’s important to be specific when praying and expect miracles. It’s also important to recognize the different blessings, tender mercies, and miracles that come when the specific prayer I want doesn’t end up happening. When I don’t get my own way from the prayer I really really beg for, I want to be grateful and trust the blessings that come instead. All your prayers have brought many miracles. Thank you. Please continue praying for engraftment and the end of adenovirus.

Conundrum

BMT Day 35: Days go by fast. Weeks and months crawl. The bone marrow aspirate and biopsy planned for Monday was postponed until Tuesday for a couple reasons. 1. Monday night her heart rate monitor had a couple episodes of ventricular tachycardia (extremely high heart rate) that can neither be confirmed nor denied whether the monitor was correct or wasn’t picking up properly. Further monitoring is currently being done. 2. Also Monday night:  she laid down after using the bedside commode, I helped situate her pillows when she stopped responding to me, looked dazed, started making an obstructive breathing sound, and after several seconds regained alertness with an alarmed “Mom, what happened?”, followed by her heart rate dropping and then coming back up. We wondered if it was a seizure or something called vasovagal syncope which caused her blood pressure and heart rate to drop and slightly faint. The conclusion at the end of the day was that her body is going through so much and is now sensitive to passing out. 3. She vomited more on Sunday than they would have liked which is not safe to go under anesthesia. She is now set to have the bone marrow aspirate and biopsy in the morning. 

My days are constantly torn between having a stressful, heavy heart for all that Ashtyn is going through and a grateful heart knowing there are blessings seen. There are still zero white blood cells in her blood count and the level of adenovirus is going up. The major conundrum is that adenovirus can’t be effectively treated without an engrafted marrow which produces white blood cells to fight the virus, but the virus is quite likely preventing engraftment. She is on the antiviral medication Cidofovir but it doesn’t seem to be having remarkable effects. On top of that, quite a bit of watery stool is preventing her from qualifying for the study viral drug Brincidofovir. How do we get rid of adenovirus so her body will engraft when engraftment is what is needed to fight the virus? I figure prayers and a miracle is the only way to solve this problem. Please pray for decreased adenovirus and engraftment. Blessings I do see: alertness, no pain, no nausea, no fungal or bacterial infection, kidneys are keeping up, liver is happy, lungs look good, no temperatures, and great blood pressures. Ashtyn wants to go home, no doubt about it. She watched her day nurse leave for the night and longed, “She gets to go home and sleep in her bed.” My heart breaks for Ash but she has an unquenchable spirit that won’t give up.

Little White Angel verses Little Red Devil

We just finished up BMT Day 34 and 41 straight days in the hospital. Every morning Ashtyn’s blood is analyzed to count white blood cells, among other values. Two days a week her blood is taken to a lab to detect adenovirus levels. White blood cells are still not seen in her labs and Adenovirus isn’t under control yet. Other than that, her health is relatively stable and the last few days have been reasonably calm. All in all, Ashtyn feels exhausted pretty much 24 hours a day. She never gets more than 2-3 hours of sleep at a time, feels overall crummy, has an achy back and shoulders, and pins and needles neuropathy in her feet. However she is pushing through like an unbelievable champ. Nurses stay busy giving her IV nutrition, antibiotics, anti fungal and antiviral drugs, plus a whole lot of other medications and lab draws. Her heart is well, kidneys are doing better, and sleep apnea is improving. It is agreed by those in the hospital that she looks way better than one would expect from her history, labs, and reading her paperwork. I think it’s miraculous. My brother Jared and sister in law Nanette flew to Seattle from Salt Lake City and hung out at the hospital with us Friday and Saturday. Family and friends bring rejuvenating energy.

You know how some cartoons show a character that has a little white angel on one shoulder and a little red devil on the other, each giving conflicting thoughts? I kind-of felt like that the last couple of days. Little White Angel: It’s been more mellow lately compared to all the other days this past month. I feel peace and calm. Little Red Devil: Keep your guard up and buckle up because something bad is going to happen. There’s always a severe storm after the calm. Little White Angel: I’m not stressed and worried about engraftment. We’ll see white blood cells when we see them. Little Red Devil: Any normal mom would be nervous. You are numb and apathetic. Little White Angel: She will engraft. I don’t know when, but it will happen at the right time. Little Red Devil: Her body won’t engraft for weeks so be ready for hell when everyone at Seattle Children’s Hospital doubt and start sweating bullets thinking she’ll need a 4th transplant and wondering what her wishes are. Little White Angel: Have faith in God’s plan. Little Red Devil: Why God are you being so cruel? Where are you? You don’t ever listen to me. You promised! You promised this wouldn’t be too hard. You promised we would be amazed. White Angel: The calm and peace you feel is real. He’s right here. Ashtyn is doing amazing and every promise so far has been given. Don’t doubt now. Little Red Devil: Take this cup from me. I can’t handle it. Little White Angel: If the bitter cup is too difficult to drink, Christ will strengthen you to be able to drink it, just like He always has.

On Sunday I had time to contemplate and sort out my conflicting emotions. One of my favorite songs is called “Blessings” by Laura Story. The words came to my mind, “We pray for wisdom, your voice to hear. We cry in anger when we cannot feel You near. We doubt your goodness, we doubt your love, as if every promise from Your word is not enough. All the while you hear each desperate plea and long that we’d have faith to believe. Cause what if your blessings come through raindrops? What if your healing comes through tears? What if a thousand sleepless nights are what it takes to know you’re near? What if trials of this life are your mercies in disguise?” I’m happy to say that Little Red Devil was flicked off my shoulder and is no longer around. Monday Ashtyn is going to have a bone marrow aspirate and biopsy that will be helpful in finding out what is going on in the marrow. I’ll let you know results when they come back. Please pray 1. the bone marrow aspirate and biopsy will be promising. 2. antiviral medications will kill the adenovirus. 3. engraftment will occur.

Summary

Childhood Cancer Awareness Month ~ 

Ashtyn was diagnosed with Acute Undifferentiated Leukemia (AUL) on January 30, 2013 at the age of 12. She had many months of chemotherapy followed by a bone marrow transplant on June 11, 2013 donated from her brother (engraftment on day +21). She was declared cancer-free, but continued to have frequent check-ups to make sure she was still in remission.

On October 9, 2016, she was at church and her parents noticed that she looked pale and greenish so she walked home to get some water and something to eat. Before she walked back to church 45 minutes later, she texted her mom and said that she felt lightheaded to the point that she would be nervous walking back. Her mom went home and took her to the local instacare.

At the instacare, they did blood work which revealed that her white blood cell count (WBC) was 85,000 when normally they should be at about 3,500. Ashtyn was sent to the children’s hospital and everyone knew that her cancer was back. Ashtyn was admitted to the PICU because her blood was thick and she was at a high-risk for a stroke.

After three hours in the PICU, two oncologists came down and confirmed that she had relapsed with Acute Undifferentiated Leukemia (AUL) after 3 ½ years of remission. Her bone marrow was 100% her brother, but her new cancer cells were still like her other cancer cells. This meant that there was a cell that survived her first treatment that had just started to divide. Cancer cells made up about 85% of her bone marrow.

Ashtyn began the first round of chemo on October 12, 2016. She needed red blood cell and platelet transfusions but because there were so many cancer cells in her bone marrow, she could not have them until the chemo started to kill some of the cancer cells.

On October 17, Ashtyn was transferred to the ICU in septic shock with typhlitis and gram-positive bacteria in her blood. The doctors didn’t know if she would make it through the night and many of them thought she was certainly going to die. Ashtyn had her breathing tube taken out on October 20, but she seemed delirious and they were worried about organ damage due to her not being able to get an adequate blood supply to her organs when she was in septic shock.

As she recovered, she experienced extreme abdominal pain and her liver was not functioning well. She was jaundiced and her bilirubin counts were way too high. Her kidney function was also too low, only 60% at one point. On October 27, Ashtyn had a bone marrow biopsy to make sure the cancer wasn’t growing and to see how many cancer cells were still there after the first round of chemo. The biopsy showed that the cancer cells had decreased to 0.9%. After a month in the hospital, Ashtyn got to go home in mid-November. Her bilirubin continued to go down and her kidney function improved. In early December, Ashtyn started the second round of chemo.

On January 4, 2017, Ashtyn had another bone marrow biopsy to see if there were still cancer cells left. They were hoping to find that she had 0.00% cancer cells in her bone marrow because then she could start preparing for another bone marrow transplant. Also, the longer leukemia takes to get into remission, the more resistant to treatment it becomes. Her biopsy showed that there were still 0.02% leukemia cells in her bone marrow so she would need another round of chemo before they could start preparing for a bone marrow transplant.

After her third round of chemo, Ashtyn had a bone marrow biopsy on February 7th to see if she was cancer-free and could go ahead with the bone marrow transplant. On February 13, Ashtyn and her family found out that she was cancer-free and had 0% leukemia cells in her bone marrow.

On March 1, Ashtyn had surgery to have a broviac line placed in preparation for the transplant. The next day, Ashtyn was admitted to the children’s hospital to start preparing for her bone marrow transplant.

On March 8, Ashtyn’s dad went to the OR and had 1 liter of his stem cells and blood extracted to give to Ashtyn. Ashtyn had her second bone marrow transplant later that day. Ashtyn engrafted on March 25 (17 days post-transplant). Ashtyn got to ring the bell signifying the end of treatment on March 31 and shortly afterwards she got to go home. After being home for just 25 hours, her mom noticed that she felt warm. She was taken back to the children’s hospital. Her labs showed that she had two viruses: Cytomegalovirus (CMV) and Human Herpes Virus 6 (HHV-6). Ashtyn was able to fight off the viruses and went home on April 21 after 51 days in the hospital.

February 13, 2018, Ashtyn had a routine monthly check-up. Her complete blood counts were abnormal even though she felt perfectly healthy. Her platelets, red blood cells, and white blood cells were very low. They were worried that she had relapsed so she had a bone marrow biopsy to test of relapse or an infection.

The next day (February 14), Ashtyn and her family got the news that she had relapsed for the second time. Because Ashtyn’s leukemia doesn’t have the usual markers or characteristics, she had never qualified for a clinical trial before. A study drug called Venetoclax was made available on November 11, 2017 and she qualified for the study. Venetoclax is supposed to make leukemia cells more susceptible to chemotherapy.

Ashtyn and her mom traveled to Seattle in the beginning of March so she could get the drug along with chemo drugs she had had before. On March 8, 2018 (exactly one year after her second bone marrow transplant), Ashtyn started the Venetoclax. She was only one of two patients at Seattle Children’s Hospital receiving this drug at the time.

After 21 days of Venetoclax given alone, her bone marrow was tested to see if the drug by itself had an effect on leukemia cells. When she started the study drug, she had 93% leukemia cells in her bone marrow. After the 21 days, Ashtyn had 8% leukemia cells in her bone marrow. They had not expected the drug to have such a dramatic effect when used alone. She would continue to take the Venetoclax and add three chemo drugs.

The particular bone marrow transplant they were hoping to give Ashtyn would include umbilical cord donor and a study chemotherapy drug called Treosulfan. She needed to be in remission to receive the study drug. Her bone marrow aspirate back in April showed that she had 0% leukemia cells in her bone marrow, but she only had 10% cells in her bone marrow and the study requires 25% and 0.0% leukemia cells.

In May, she had another bone marrow biopsy in the hope that her bone marrow would have enough cells. A few days later, they got the results of Ashtyn’s bone marrow biopsy and her bone marrow had enough cells, but leukemia cells were found. Her bone marrow transplant that was scheduled for May 29th was canceled.

Ashtyn had the same regimen that she had in April starting May 31st. She also started steroids that caused her to gain 20 pounds.

Ashtyn had her bone marrow tested again to see if she qualified for the bone marrow transplant. It showed that she had 25% cellularity in her bone marrow and 0.00% leukemia cells!

On July 31st, Ashtyn started preparing for her bone marrow transplant from an umbilical cord donor. Throughout her preparations and transplant, Ashtyn was very achy and in a lot of pain. On August 5, Ashtyn had radiation therapy. She had her THIRD bone marrow transplant on August 6, 2018 at the age of 17.

Ashtyn has dealt with several infections with no immune system, kidney issues on the verge of needing dialysis, breathing problems, delirium likely caused by medications, pain, ICU stays, sleep apnea, and heart worries.

Today is day +33 and Ashtyn still hasn't engrafted. If she doesn't engraft by day +42 then they will consider her bone marrow transplant a fail (called graft failure).

BMT Day 32

BMT Day 32: I’ve used the word “engraftment” a lot lately. A bone marrow transplant is a process that obliterates the old bone marrow with chemotherapy and radiation because it was insufficient at providing an immune system that kept leukemia in remission. Donor cells then are transfused into the blood, make their way to the empty marrow space, and over time build a new bone marrow that provides an immune system which ideally prevents cancer from coming back. A successful transplant depends on engraftment: when the donor stem cells establish themselves in the bone marrow space where they grow and develop into new blood cells. Engraftment allows the bone marrow and immune system to begin recovery. The indicator that engraftment occurred is when a complete blood count lab shows white blood cells, specifically neutrophils. If engraftment does not occurred by Day 42 it is said to be a graft failure which is a serious complication. To further put things into perspective, Ashtyn engrafted on Day 21 with her first transplant and Day 17 with her second. How do we feel about being well past the average day for engraftment? It is completely out of our control. The only thing we can do is keep praying and hand it over to God, who is Ashtyn’s ultimate parent, with trust in His plan.

Story: Ashtyn dreams big and always has. Tonight she asked, “Would you let me do an experiment and see if my stomach can handle milk?” Without a doubt I said, “Of course! By the way, room service closes in 10 minutes so if you want something you better order.” Looking at the menu for the first time in a month, she told me to order “one chocolate shake, one chocolate milk, one regular milk, one peach smoothie, and a orange ICE.” The girl hadn’t had anything in her stomach besides water in weeks but why not dream big? She took one sip of the smoothie, drank the entire container of chocolate milk, drank the entire container of regular milk, and then laid in bed with a barf bag waiting to see what her stomach would do. 10 minutes later she threw up the 16 ounces of milk plus 10 ounces of whatever else was in her stomach. After everything was out of her stomach, the first thing she said was, “I think I’ll try milk again in a week. I’m thirsty, can I have some water?”

Please continue to pray 1. Adenovirus will be killed 2. The skin/line infection will get better. 3. Sleep apnea will improve. 4. Kidneys will heal and less potassium will be needed. 5. Her heart won’t go into ventricular tachycardia. 6. Engraftment will occur.

BMT Day 31

BMT Day 31: No white blood cells seen yet. For the last two days Ashtyn hasn’t felt well at all. She is more achy, more nauseated, more tired, and feels all around more lousy. I’m convinced whether we have a good or bad day depends on our perspective and what we decide our day will be rather than our circumstances. Yesterday was a good day and I suspect today will be the same. Referring to Ashtyn not feeling as well as a few days ago, my response was, “Good. I’m glad you feel different because engraftment is different. I’m sure you feel achy and fluish because you are engrafting. I’m grateful.” She agreed. I also had to do a momma fast yesterday where I didn’t eat or drink for 24 hours and was more prayerful. I wanted to be certain God knew of my gratitude for Ashtyn’s current health despite the fact that she hasn’t engrafted yet. She was moved out of the intensive care unit back to the cancer floor. I can’t doubt the miracles of the two weeks in the ICU. Her kidneys should have needed dialysis with all the “harmful to kidneys” medications and fluids that are required to keep her alive. Along with that, it was a miracle she didn’t need a breathing tube. While in the ICU she became completely alert, her kidneys and lungs improved, and skin breakdown healed. I’m grateful for answered prayers. Right now she still needs a potassium drip, requires a lot of medications, and continues shallow breathing when sleeping. It’s nothing the cancer floor can’t handle.

My parents were in town for a couple days and left yesterday. I’m grateful for their help and support. I don’t know how many times they walked back and forth from the laundry room washing soiled blankets and clothes. There’s also something about having Grandma and Grandpa there even when she didn’t talk much. I’m grateful for Ashtyn’s Army. Everyones faith, belief, optimism, hope, and love is amazing. If you want to be inspired and uplifted, read the comments written. This world is full of good people. As Mr. Rodgers said, “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping,’” Thank you to everyone for the numerous ways you have helped Ashtyn, me, and my family. Even the silent followers have my heart. 

Please pray: 1. Adenovirus will be eradicated with the antiviral medication she’s on. Adenovirus is probably interfering with the ability to engraft. 2. Her stubborn skin/line infection, picture included, will go away so it won’t have to get pulled. 3. Sleep apnea will improve. 4. Kidneys will heal and less potassium will be needed. 5. Her heart won’t go into ventricular tachycardia where her heat rate goes way too high for a few seconds. 6. Engraftment!!! and for protection until she gets there.

Sun and Water.

Unique patients get a lot of attention.

Infection, go away.