Monthly Archives

March 2013

To Clarify

By | Daily Life, Uncategorized | 3 Comments

I knew nothing about cancer before Ashtyn’s diagnosis. I mean nothing. After two months I am no where near an expert on leukemia. The only things I know are from whatI’veseen and learned from staff around me. I don’t research or read books, web pages, articles, or literature of any kind about cancer. I don’t want to. I choose not to. Ashtyn is unique and she will go through cancer how God intends, not how statistics have shown. So I learn as I go. With that said, I will inform you the best I can as to what makes Ashtyn unique and what she is facing.

There are two main types of leukemia in children, the common acute lymphoblastic leukemia (A.L.L.) and the more rare acute myeloid leukemia (A.M.L.). It is well known that Ashtyn does not have A.L.L or A.M.L. Her cancer cells are unique and their appearance has baffled oncologists across the world. Her diagnosis is “undifferentiated leukemia.”

My very limited understanding of A.L.L is that the patient receives chemotherapy at home, as long as they don’t have a fever. At the end of each month a bone marrow aspirate is done to determine if the individual has gone into remission (no signs or symptoms of leukemia). Once in remission they are put on “maintenance” chemotherapy for a long time to prevent any remaining leukemia cells from growing. There are more details in the middle relating to treatment, side effects, blood counts, etc, but that’s a summary.

My limited understanding of A.M.L treatment is the patient stays in the hospital for 10 days during intense chemo and 20 days recovering. After 30 days the individual goes home for a few weeks preparing for another 30 days of treatment. If remission occurs, four rounds are done and the patient is then cancer free. If the A.M.L seems high risk then a bone marrow transplant is done once in remission, decreasing the likelihood of the cancer coming back.

Ashtyn’s first round of chemo in February was based on the chemo protocol for A.M.L.. After the A.M.L round, Ashtyn went home. However four days later it was discovered that the chemotherapy used had not been effective on Ashtyn’s cancer. They immediately had her come back to the hospital to start A.L.L treatment with a few intensifications. Why was Ashtyn not allowed to go home during A.L.L treatment when typically patients are allowed to? The doctors felt Ashtyn was at high risk of getting extremely sick quickly and would need to be in the hospital so staff could respond immediately. That proved to be true on March 22nd. After two weeks of A.L.L chemotherapy drugs, a bone marrow aspirate was done on Friday to determine how her cells responded. The results come back today. If the treatment seemed to kill many of her cancer cells, Ashtyn will stay in the hospital to continue the course for a few more weeks. If the treatment did not work I asked the doctor if Ashtyn can go home for Easter before they start another round using new chemotherapy drugs on Monday. The doctor was very hesitant about letting her go home. The concern is not that she will get sick from being outside the hospital. The fear is that she will suddenly get sick and need hospital staff to treat her immediately. I understand completely. However I also understand her emotional need to go home and get a break from the hospital. Ashtyn will never be able to go home for a long period of time during her cancer course. I need to take the rare opportunities that arise and get her home for a few days from time to time. The doctors recognized if she starts a new course Monday, it would be another month before there would be a window for her to go home. The agreement was that if on Saturday morning it is determined that the A.L.L chemotherapy did not work, Ashtyn could go home Saturday and return Monday morning.

Of course the prayer is that Ashtyn’s cells have responded to the chemo requiring her to stay in the hospital. If the chemo did not work, we will be grateful for the chance she gets to go home and have full faith and hope that the next round will contain the chemotherapy drugs that her cells will respond to. The ultimate goal is to discover what chemotherapy drugs work, get her into remission, and do a bone marrow transplant which will decrease the likelihood of the cancer coming back. She must be in remission to increase the chances of a successful transplant.

Ashtyn With Sunshine

Ashtyn With Sunshine

Ashtyn with BYU

Ashtyn with BYU

Cancer is an awful disease. However there is so much good surrounding cancer. There is a spirit that is partnered with cancer that is unlike anything I have ever experienced. The tender hearts and concern, the care and compassion, the thoughts and service, and the loving emotions attached to cancer is astonishing. Last week Ashtyn opened a box donated by strangers in L.A. California who started “Ashtyn’s Army in LA” onFacebook The box was full of items to bring sunshine to her day. Yesterday she opened a box containing a bald American Girl Doll and accessories donated by a group of more loving strangers. Today a girl from her youth group brought up a basket full of BYU items donated by both neighbors and strangers. In addition to strangers pulling together, friends from years past have shown incredible care and generosity.

Ashtyn With Landon Cooper

Ashtyn With Landon Cooper

More proof of the good surrounding cancer: Ashtyn got a visit today in the hospital from Landon Cooper and two men from his team. Landon founded miles2give.org. He is running 3,000 miles, through a 150-day endurance feat, that will raise over $100,000 for Sarcoma Cancer research. He started in Ocean Beach, California on February 14th and is running across the country to Washington DC by July 4th. The moment they walked into Ashtyn’s room hugs were exchanged as if we were close friends. We had never met, however we share the bond of cancer. They interacted with Ashtyn as if they knew and loved her as family. The positive spirit brought by these men was quite uplifting. They have dedicated their lives to raising money for cancer research, inspiring others, and uplifting those who are affected. As they left Landon said, “She is the hero.”

The Ministry of Angels

By | Daily Life, Uncategorized | 6 Comments

Ashtyn has been back in her room from the pediatric ICU for 36 hours.  She looks good.  She feels good.  From now on I will constantly be on high alert with her.  My eyes are more wide open for when her body does something out of the ordinary.  My heart is more open to when I feel things aren’t quite right.  Since leaving the ICU, her heart rate is lower than it was before.  A week ago her heart rate was 70 to 100 beats per minute when awake and 60 when asleep.  Now when she is awake her heart rate is 60 and 45 to 50 when she is sleeping.  There really is no explanation to why her heart rate is lower and no one seems that concerned.  However, I am now uneasy about anything that may seem abnormal.  Sunday night I couldn’t go to sleep until they did something, so she had an EKG which showed her rhythm is normal.  In the morning I will ask if a heart ultrasound can be done just to make sure her heart is pumping blood properly.  If her heart looks normal then I will rest assured that her low heart rate is fine.  Other than that, Ashtyn has been doing well.

In the past two months Ashtyn has had moments when her health is stable and other moments when she has been extremely sick.  I have always felt that mortal and heavenly angels are intertwined on this earth going about doing good.  Ashtyn and I have felt help from both sides working to build us up.  It seems when she is stable, Ashtyn’s Army and her earthly angels care for her with prayers, messages, visits, food, gifts, and love in many forms.  When she has been extremely sick and there’s nothing we can do for her except pray, I have felt heavenly angels take over.

Moroni 7:29-30 says, “my beloved brethren, have miracles ceased?  Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men. For behold, they are subject unto him, to minister according to the word of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness.”

On February 17th, during a time when Ashtyn was extremely sick, I published a post called “On the Bright Side.”  I wrote, “with the most humble and sure voice Ashtyn has told me about her Great Grandma Holt who just passed away in November from lung cancer.  I don’t feel my grandma near but Ashtyn does.  Ashtyn and I have had a few short conversations in the last 2 days about Grandma’s visits.  Ashtyn isn’t able to talk much and when she does it is in short, quiet sentences but this is a summary of what she has told me:  ‘Yesterday Grandma Holt talked to me a lot.  But not very much today.  I just know that it’s her.  She talks in my ear.  She told me that everything is going to be OK.  She told me to have faith.  She told me to focus on today, hope for a better tomorrow, and know that God has my back.  She told me that I am strong.  She told me not to listen to what people are saying in my room because no one knows what my body can do like I do.’”

Elder Holland said, “from the beginning down through the dispensations, God has used angels as His emissaries in conveying love and concern for His children.  Usually such beings are not seen. Sometimes they are. But seen or unseen they are always near. Sometimes their assignments are very grand and have significance for the whole world. Sometimes the messages are more private. Occasionally the angelic purpose is to warn. But most often it is to comfort, to provide some form of merciful attention, and guidance in difficult times.”

In my last post I mentioned when Ashtyn was “coding” and gained consciousness, the first thing she did was looked to the empty corner and said, “Grandma!”  In the post I didn’t expound because Ashtyn said nothing else about it and there wasn’t anything else I needed to say.  The next day, Saturday, I asked Ashtyn if she remembered calling out Grandma’s name.  She didn’t remember anything about it.

By Saturday night Ashtyn was stable and feeling fine in the PICU.  She was completely awake and alert.  The only medications being given were antibiotics.  She hadn’t had narcotics for weeks and was off anti-nausea medications as well.  The plan was to keep her overnight in the PICU and send her to the floor in the morning.

At 5 am Sunday morning, Ashtyn woke me up so I could help her to the restroom.  She was hooked up to monitors.  The easiest thing for her to do was use a bedside toilet.  Afterwards she got back in bed and laid down as I quickly used the restroom in her room.  I was gone for maybe 30 seconds.  When I opened the bathroom door to come out Ashtyn exclaimed with an intense voice, “Mom! I just saw Grandma!”  I tried to act cool and calm though for some reason the idea of seeing angels has always scared me.  I sat on the bed next to her as she explained what happened.  “I was looking around the room waiting for you to get out of the bathroom and I just saw her over there to the left of the computer.  She was beautiful and glowed.  She was wearing a white dress with ruffles at the top.  She was healthier and happier.  Mom, it was so clear.  She smiled and waved to me.  I smiled back.  It was a nervous smile because I was shocked to see her.  And then she faded.  I think she is really busy but wanted to let me know she is watching out for me.  I am really happy I got to see her.”

Elder Holland said, “He (God) watched over His mortal family constantly, heard their prayers always, and sent prophets (and later apostles) to teach, counsel, and guide them.  But in times of special need, He sent angels, divine messengers, to bless His children, reassure them that heaven was always very close and that His help was always very near.  I testify that angels are still sent to help us, even as they were sent to help Adam and Eve, to help the prophets, and indeed to help the Savior of the world Himself.”

Second Trip to the ICU

By | Daily Life, Uncategorized | 5 Comments

On March 15th, Ashtyn was devastated to go back to the hospital after only being home for four days. “Why do I have to be here? Why can’t I do the chemo at home? I feel fine!” Every day Ashtyn asked when she could go home. I explained, “You need to be in the hospital in case you react poorly to chemo, get sick, or something happens. I will fight for you to go home when it is the right time but it is not the right time.” For the past three days, Ashtyn stopped begging to go home.

In my last post I mentioned, “I know each day can change in an instant” and it did. Friday morning she woke up and immediately texted her uncle Jared asking him if he would bring her Indian food, strawberry shortcake, and eat dinner with her. She then ate breakfast, watched TV, did physical therapy, and rested in bed. Her body is generally weak and able to do only a minimal amount of activity before she wants to collapse. The “easy” task of raising her arms above her head or doing 20 squats is actually extremely painful and quite difficult. She was eating, her vital signs were stable, and she seemed comfortable so to me she was doing pretty well. At 5 pm it was time for her bath and central line dressing change. She had just finished physical therapy, “just give me 10 minutes to rest.” However she never woke up or felt well enough that I was comfortable forcing a bath or dressing change. She was exhausted and extremely nauseated. The nurse gave her IV medication every 2 hours to try and help with her upset stomach. What had always helped her nausea in the past was not helping at all. Why was she so sick to her stomach? Her vital signs were stable though I didn’t like the vibe she was giving me. I talked to her nurse about how Ashtyn has become a girl whose health can change suddenly. I explained, “when friends or family members ask to come visit her in the hospital I always tell them to please text me an hour or two before coming because I never know how Ashtyn will be feeling or behaving.”

At 7 pm Jared and Nanette brought her the Indian food and strawberry shortcake she had been looking forward to but she was not interested in food at all. For days she had been constantly hungry while taking the medication dexamethasone, but now had no desire for food. She hardly socialized with her visitors and continued sleeping.

At midnight Ashtyn woke up, “Mom, I don’t feel well at all.” I immediately got in bed with her and noticed right away that she was feverish. Her temperature was 102.5 with a red, flushed face. The nurse took her blood pressure and was unable to get the bottom (diastolic) pressure…it was too low. As she left the room to call the doctor, Ashtyn needed to go to the restroom. I walked her to the restroom. On the way back to her bed she stopped walking and felt strange in my arms. “I need help” I said. She continued walking a few more steps and collapsed in my arms. The charge nurse opened the door and with one look at Ashtyn he called out, “Code.” “Yes! Call a code.” I responded. As I was trying to get my noodley daughter in bed I heard over the loud intercom, “Code Blue 4403. Code Blue 4403.” Simultaneously, Ashtyn woke up, I laid her in bed, staff members poured into the room, and she called out to the empty corner, “Grandma!” I held her hand with my face close to hers while vital signs were being done, blood was drawn, and IV fluid poured into her central line. A doctor asked her questions, “What is your name? Do you know where you are? How old are you?” She knew the answer to the questions. “Mom, are you nervous?” This was the same question she asked me on February 17th when we were going through the same thing. “No Ashtyn. I am not nervous. You are going to be fine.” And the honest truth was, I wasn’t scared. With the code team there, I had complete comfort knowing she was in great hands. They were doing everything that was needed to help Ashtyn. I was so grateful they were all at her bedside. I was so grateful I was at the hospital. I was grateful she went to the restroom at the time she did and passed out, giving us a clear sign that she needed immediate intervention to help increase her blood pressure and blood flow to her brain. I was grateful she was going to be monitored in the Pediatric ICU until she was stable.

Getting her stable enough to leave for the PICU

Getting her stable enough to leave for the PICU

Heading into the PICU

Heading into the PICU

Her bed was soon pushed through the halls, into the elevator, down to the 2nd floor, and into the PICU. Once in her room, more fluids were given to try and increase her blood pressure. It was soon apparent that norepinephrine was going to be needed to maintain a decent blood pressure. Her initial blood pressure during her “code” was 63/15. A normal blood pressure for her is around 100/55. Norepinephrine causes vasoconstriction, narrowing the blood vessels and increasing blood pressure. Antibiotics and norepinephrine were started. Ashtyn laid in bed completely alert and completely brave. The most unpleasant thing for her was throwing up every 20 minutes for about an hour, “I hate this.”

Holding Ashtyn’s forehead while she was not feeling well in the PICU

Holding Ashtyn’s forehead while she was not feeling well in the PICU

By 4 am everything had settled down and it was time to sleep. I slept on a chair that reclined flat. Ashtyn slept in her hospital bed with fluids running though her right hand peripheral IV, and medications and fluids running in her broviac central line. She had a blood pressure cuff on her left arm taking her blood pressure every 10 minutes. Her oxygen saturation monitor was wrapped around her right thumb and three EKG leads were attached to her chest. There was one nurse watching over her monitors at all times and numerous doctors and staff at our disposal if needed. I fell asleep without any worries.

Saturday was spent in the ICU weaning her off norepinephrine. By 8 pm she no longer needed medication to keep her blood pressure normal. Her biggest worry? When were they going to let her eat? She was starving all day. By 8:30 pm they finally allowed her to eat.

Watching TV Saturday

Watching TV Saturday

Is she sick with a bacterial infection or did she have a reaction to a chemotherapy drug given 10 hours prior? It is yet to be decided. Tonight we talked about the ICU experience. I asked her, “why did you ask me if I was scared?” Her answer, “Because if you are scared, I’m scared. The only thing that was scary was when they started the IV. I felt God was near the entire time. Throwing up sucked though, but He was still there. I just want to go home for Easter. It is my favorite holiday. Even if I can only go home for one day, I will be grateful for what I can get.”

“Each of us will face trials and tests. It is how we react to those difficulties that will determine our success and happiness… I realize that it is much easier to look back when a trial is over and see what we have learned from our experience, but the challenge is to gain that eternal perspective while we are going through our tests.” Elder James B. Martino

coping

By | Daily Life, Round 2, Uncategorized | 3 Comments

On February 1st, two days after Ashtyn was hospitalized, I received a message from Brady, whose daughter Millie was on the same floor.

“Suzanne,
I’m very sorry to hear about Ashtyn. While I’m no expert, we’ve been dealing with this now for over three years, so I can give some advice on how to deal with it as a parent.

Millie was only four when she was diagnosed, so she was much younger than your daughter, but I still believe this holds true. Our children don’t fully understand what they’re facing. They gauge how bad the situation is by how we react. If we cry all day and are depressed, they will be frightened. If we are calm, confident, and tackle this task like it’s normal, they will feel the same way.

That’s not to say that I’m never sad – Millie and I have cried together many times. However, we are happy nearly all of the time. On a particularly tough day a few weeks ago, Millie and I talked about it, and she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best. We’ve gone to Disney World with Make-A-Wish, met Justin Bieber, Swoop (the mascot from the U) visits her all the time, and thousands of people have sent her mail/emails. I can’t tell you how many wonderful things have been done for us by friends, family, neighbors, and total strangers.

When I told Millie about your daughter she said ‘Dad, I really wish she didn’t get cancer. Please tell her that even though it’s really bad, a lot of good things happen, so she shouldn’t be too sad.’ Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

At the time I got this message I was being bombarded with information. I was completely sensory overloaded and wasn’t able to take to heart what he wrote. Now that I look back at his message I understand with clarity how he felt. I could now write the same letter to someone else with complete honesty and say the exact same things. Children feel and react how their parent’s feel and react. I have observed this with my own children from the time they were born. It continues to be true when dealing with Ashtyn. From the beginning, in my mind, we were not going to shrink while facing cancer. We were not going to lose ourselves. We were not going to soak in sorrow or throw a pity party. No way! I knew Ashtyn was capable. I knew God was fully aware and had a plan for her. As Elder Bednar put it, “Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer. And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.” We were to be strong, confident, and optimistic. Faith and a positive attitude has been empowering.

Today when I read, “she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best,” I knew Brady was being sincere. In the short time Ashtyn has had cancer, it has been the worst thing that has ever happened to our family, however it has also brought the greatest blessings. We have experienced wonderful things done by friends, family, neighbors, and total strangers. We have experienced feelings of the Spirit, angels, and God being very near. Ashtyn has already experienced what Millie has observed in her own life. “Please tell her that even though it’s really bad, a lot of good things happen.”

It is difficult for some to understand how Ashtyn and I can find joy in this experience. Others have been shocked that we don’t feel anger. There are those that wonder why we aren’t being more “real” with feeling sorrow and doubt. The reality is, our hearts are full of peace and comfort. Our positive vision for the future fills our minds. Our knowledge of God’s presence in our lives fills our souls.

Ashtyn_CopingThe last several days have gone by pretty smoothly for Ashtyn. Her days have been spent eating, sleeping, watching TV, doing physical therapy, and talking to staff and visitors. Physically she has felt well though her body is weak and tires easily. Emotionally she is doing well though she wants to go home and is not even able to leave her room. I know each day can change in an instant. Today she woke up at 9:30 am, the earliest since being in the hospital. She was awake and alert all day feeling good. By 9 pm she started to not feel well. She was nauseated and felt bloated. She informed me, “I just don’t feel right. I am going to rest for a bit.” With that said, she put on the “LDS Hymns” station on Pandora and closed her eyes. As I watched her I sensed how crummy she felt. I was so proud of her ability to cope without complaining as she focused on the words of the music. With her eyes closed, her lips moved along to the words of the song, “Jesus Once of Humble Birth.” Her fingers played along to the piano of “Kiss the Rain” by Yiruma.

The words of Brady ring true and bring a tremendous amount of joy and gratitude. “Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

Prayer is Part of Our Routine

By | Daily Life, Round 2, Uncategorized | 7 Comments

After spending 45 out of 48 days at Primary Children’s Hospital, Ashtyn and I know the routine.  Attending, fellow, and resident doctors, nurse practitioners, registered nurses, child life specialists, anesthesiologists, pharmacists, house keepers, dietitians, physical and occupational therapists, techs, volunteers, psychologists, integrated medicine specialists, and parents of other patients are becoming familiar and conversations are developing with our new friends.  A parent of another patient went to Walmart and picked me up some Propel.  Our morning nurse woke us up with hot chocolate.  The night nurse brought us Bill Cosby comedy CD’s to listen to.  Other nurses that aren’t assigned to care for Ashtyn come in to say hi and ask if she needs anything.  These acts bring joy to my heart as everyone is taking such good care of Ashtyn.

Monday morning Ashtyn was wheeled downstairs to get the chemo drug Methotrexate injected into her cerebrospinal fluid through a lumbar puncture.  As far as Ashtyn was concerned, it was the same experience as the two bone marrow aspirates she has had.  We walked through the same doors, into the same room, a nurse asked a few questions, and the anesthesiologist introduced herself.  The child life specialist, Lindsey, automatically knows to bring Ashtyn an iPad to play Disneyland Explorer while waiting.  Once in the OR, Ashtyn laid on her right side and a mask with the watermelon smell was placed over her face.  “Mom, I need you in front of me.”  I held her hand and squatted down so my face was right in front of her face while the anesthesiologist put Propofol into her IV.  She asked, “Are you putting it in?  How long until I fall asleep?”  Before I could answer, she was asleep.  After the procedure Ashtyn was taken next door where I was invited to come in and watch her as she slowly woke up.  I offered her a slushy.  “What flavor do you want? Raspberry lemonade or Root-beer?”  Even in her drowsy state she knew, “Raspberry lemonade.”  She has had the root-beer slushy numerous times, she must have wanted to try something different.  She can’t eat 12 hours before anesthesia so as always she woke up hungry and wanted chips.  After eating a bag of chips she was ready to head back to her room.  We totally have it down to a science.

Once she got back to her room she was exhausted for the rest of the day.  She didn’t seem to feel well and started having frequent restroom visits.  Within five hours her vigilant nurse decided to test her for C-Diff.  The results came back positive.  Her blood work from the night before came back as well showing high liver enzymes.  Whenever anything unusual happens, Ashtyn’s lack of medical understanding causes her to think the worst.  Several weeks ago when she heard she had pneumonia, her first thought was that she was going to die because her over 90 year old great grandpa died of pneumonia.  When she heard her liver was struggling, her first question was, “am I going to have to have a liver transplant?”

With the news of her intestinal bacteria infection and her struggling liver, I asked people over Facebook if they would specifically pray that the effects from C-Diff would be minimal and that she would overcome it quickly.  I also asked if people would pray that her liver would recover and be able to do what it needs to do.

The next day, Tuesday, I knew from the moment Ashtyn woke up that she was feeling better.  The entire day she had absolutely no signs or symptoms of C-Diff.  She didn’t experience stomach pain or intestinal difficulties at all.  The doctor also informed us that her liver enzymes had come down significantly to almost a normal level.  Of course Ashtyn’s C-Diff, liver, and her overall day was better because of prayer.  We both know that with prayers she will be blessed.  Each day there have been tender mercies from prayers being answered.  Our burdens have been lightened daily because of the prayers of others.

 

 

Side Effects

By | Daily Life, Round 2, Trials, Uncategorized | 17 Comments

Ashtyn was very tearful today.  She is not only struggling with having to be in the hospital for an unknown amount of time but she also is dealing with side effects from the chemotherapy drugs being given.

She started four of the five chemotherapy drugs she’ll be taking for the next two weeks.  Chemotherapy drugs destroy cancer cells by interfering with the cancer cell’s growth cycle.  The first drug she has taken is called Mitoxantrone.  It is a blue liquid that commonly causes low blood counts 1 to 3 weeks after treatment, blue/green color urine, skin rash, nausea, mouth sores, fatigue, and a list of other things.  She takes medicine every two hours that helps her not be nauseated, though the side effects from the nausea medications make her very tired.  To help with the possibility of mouth sores I try to encourage her to brush her teeth and/or use mouth wash every time she goes to the bathroom.  Her skin is dry and peeling from her last round of chemo, so lotion is applied heavily every day.

She took a chemo drug called Asparaginase for the first time this evening.  The side effects include allergic reaction, difficulty breathing, and headaches.  I was out of the hospital when she received the medication.  She texted me while it was being infused into her central line.  “This chemo is making me feel really weird.  My heart feels weird and I’m really grumpy and tired and I just feel different.  I miss you.”

Twice a day for the next two weeks she takes Dexamethasone, a steroid that increases the effectiveness of the other chemotherapy drugs.  Dexamethasone causes mood swings, irritability, and nightmares.  For Ashtyn the medication has intensified her normal feelings.  When she is tired, she is extremely tired.  When she gets understandably irritated and sad, the medicine makes her feelings more intense.

Vincristine is another drug she took that didn’t seem to show any side effects.  Tomorrow she’ll receive the fifth chemo drug called Methotrexate where they will put her asleep with anesthesia and inject the chemo into her cerebrospinal fluid through a lumbar puncture in-between the lower vertebrae.

How was her day with all that is going on?  She was tired and emotional.  Last night (Saturday) she fell asleep around 9:00 pm.  Other than a few bathroom runs and time to take pills, she slept in until noon.  She stayed awake for only a couple of hours.  Consistent with the side effects of Dexamethasone, Ashtyn became very emotional, “I’m handling chemo fine.  Why can’t I go home and recover there?  I miss everything more than ever.  I want to go home.  They said I could go home in four to six days.”  I tried to calm her, “Ashtyn, remember, in your heart you knew you’d have to stay longer.”  Ashtyn cried, “But I can’t handle two weeks anymore.”  I did the best I could to validate her feelings.  I knew she will go home when it is safe for her to but she needed to cry.  So I let her cry. I laid beside her not trying to fix the problem and not trying to talk her into feeling better.  I just held her with her head on my chest as she cried herself to sleep.

Three hours later Ashtyn was still sleeping.  Her dad, Jason, came up to spend some time with her.  Before leaving the hospital I stood outside Ashtyn’s room for about five minutes talking to her nurse about the plans for the evening.  Once Jason arrived, I headed out the doors and he went into Ashtyn’s room.  As I was driving away I got a phone call informing me that when Jason went into the room, she was walking around in a panic.  I talked to her on the phone and she explained her nightmare.  “I had a dream that a doctor I have never seen came into my room.  I was feeling good and doing OK so I asked if I can go home.  He said he would talk to me about it when you went to get a drink.  After you left the room he kept repeating in a mean voice with a scrunched up face, ‘You will never go home. You will never go home.  You will never go home.’ I was freaking out walking around the room half asleep.  He kept saying it until dad woke me up.”

The rest of the evening went fine.  When I got back to the hospital she cried because she didn’t get the tech that she wanted.  I gave her a bath and she cried feeling like she can’t be dramatic or mean without being judged.  (I made it clear to her that if she is mad, be mad.  If she feels emotional and dramatic, be that way.  If she is sad, cry.)  Before going to bed she cried, “I want to see Chandler’s last hockey game.  I want to support Ethan with his swimming and soccer games, and I can’t.  My friends text me and they want help with school drama, and I can’t help them.  I’m in the hospital!  I want to go home.  When can we go home?”

I laid in bed with her and by 1 am she fell asleep.  Tonight I will sleep with her.  She sleeps better when I am right beside her.  That way when she wakes she can quickly fall back asleep knowing I am right there.

The first round of chemo affected her physical body in so many ways including vomiting, mucositis, fevers, severe rash, and oxygen needs.  The second round of chemo seems to be affecting her emotionally.   It makes my heart heavy, however words of others again lift us up and remind us that everything will work out.

A note Ashtyn got on her bed tonight from a caring staff member:  “You’ve been given this challenge in life for a reason.  There is a point, a purpose, to all of this.  If nothing else, to inspire me.  Your mom, dad, friends, and all of us here at the hospital are proud of you and admire your courage with your difficult circumstances.  I’m proud to call you my friend.”   

Home Away from Home

By | Daily Life, Round 2, Trials, Uncategorized | 7 Comments

I didn’t necessarily rush to the hospital this morning.  At noon Ashtyn and I walked into the hospital, took the elevators straight up to the 4th floor, washed our hands at the entrance of the immunocompromised unit, and was greeted at the door by our nurse.  Ashtyn was quietly upset she was assigned to a different room than where she was previously.  We walked into our empty, new room and saw the words “Welcome Back!” written on the white board.

Ashtyn And Suz Back In The Hospital

Ashtyn And Suz Back In The Hospital

As soon as I had the chance, I quickly transformed the hospital room into Ashtyn’s room.  A picture of a beach with two palm trees and a hammock with the word “relax” was taped to the wall.  Two other beach pictures were hung, one with the word “dream” and the other with the word “breathe.”  To finish the wall decorations three different pictures of Christ with children were put up.  I then placed a few stuffed animals on the light fixtures, put together her new electric blue chair, replaced the hospital blanket on her bed with three of her favorite blankets, and put her pillows in pillowcases from home.  On one end of the windowsill her DVD’s were stacked next to a few activities she may want to do.  On the other side of the windowsill her Powerade, Capri Sun, and grape soda were placed by the candy and chips she picked out.  Lastly, my bed was made with blankets from home.  Ashtyn might have been disappointed to not get the room she originally wanted, however her new room is bigger and more able to fit her needs.

Ashtyn’s day was busy.  She had an EKG to check for a normal heart rhythm.  A heart  ultrasound was done to make sure her heart had not been affected by the previous chemo.  I am grateful her heart looked normal.  Afterwards, IV fluid and chemotherapy were started.  The doctor apologized for telling us yesterday that she would only be in the hospital four days, when in fact she will be in the hospital “until her white blood cell count recovers.”  I informed the doctor to not worry about telling us the wrong information.  Ashtyn and I were never planning on being in the hospital for only four days.  We had a hunch it would be longer.  I was surprised though to hear that they wouldn’t let her go home until her white blood cells recover.  I shared my opinion that her WBC’s aren’t going to recover for a while and, as long as she is stable, it would be nice if she can occasionally go home for a few days.  On Sunday she was allowed to go home without any WBC recovery.  I am grateful that Ashtyn received the tender mercy of going home for four days.  It was a much needed mental and emotional break for her.  Immediately upon arriving at the hospital today she is again not allowed to leave the floor and walk outside, even with a mask.  The doctors don’t even want her to leave her room.  And to think that hours previously she was able to experience some freedom.  I am grateful that even though Ashtyn has not had the ability to fight illnesses for a few months, she has never had an infection.  What a miracle to be able to focus on fighting cancer without worrying about other illnesses.  No words can express how I feel other than complete awe at the tender mercies and seeing God’s hand in our daily life.

Depression does try to seep into my heart.  I have been able to quickly push out feelings of despair by relying on support from new friends I’ve met, old friends who I know are standing beside me, and the love of family.  When I found out that Ashtyn had not responded to the previous chemotherapy treatment and needed to go back to the hospital I contacted a new friend, heard from old friends, and had family immediately there for me.  It was remarkable.  There are those who wonder how I can stay positive and optimistic.  How can I not when I have so many people rallying around us?  How can I not be positive and optimistic when I know God is right in the middle of this trial and is in charge.  I trust Him completely.  I trust my support group.  What more can I ask for?  There is no room for negativity when I am full of faith in God and full of love from friends and family.  I have not lost one ounce of faith.  Your fasting and prayers have not gone unheard by God.  He heard those prayers, blessed Ashtyn, and I know He will continue to do so.

Heading Back

By | Daily Life, Round 2, Trials, Uncategorized | 18 Comments
Hanging At Home

Hanging At Home

From the moment I heard that Ashtyn had cancer, I never believed the path would be easy.  I understood her journey would be a roller-coaster.  I knew I needed to cherish the happy times.  During difficult times I knew I needed to have hope that good times would come again.  This week was a good week.  Two nights ago I said to Ashtyn, “I’m happy. Are you happy?”  She replied, “I am happy because I choose to be and because I am at home.”  Isn’t that true?  First, we have to choose to be happy.  Second, we have to be grateful for what we do have.

At one time or another, life is hard for everyone.  It can be difficult to find joy during the rough times.  However, it can also be difficult to find joy during the good times, because we are just anticipating the next difficult time.  I suppose that is the definition of pessimism.  The problem with being pessimist is that it clouds our ability to see the blessings we have.  Ashtyn is learning to find joy in the journey.  During rough and disappointing times she can hopefully be grateful for what she does have and remember good memories.

Ashtyn has had a few really good days and has felt more happy with each day.  She left the hospital Sunday and has really enjoyed her time at home.  She wasn’t allowed to leave the house but didn’t seem to mind.  Every day she became more and more social.  Tonight she had a couple friends over and hung out with people all day.

On Tuesday, two days ago, I took Ashtyn to the hospital to get a bone marrow aspirate. It was the second time she has had that procedure.  Using a drug called propofol, Ashtyn was put to sleep.  While asleep the oncologist inserted a needle into the bone marrow in her back and withdrew a sample of the fluid portion.  The bone marrow aspirate shows how many and what kind of blood cells are in the bone marrow.  The procedure gives information needed to determine how well Ashtyn responded to chemo and what the next best course is for her.  She was nervous before the procedure but afterwards said, “I want to do that again.”  Apparently she is an expert now and propofol made her feel loopy and funny.  She liked it.

Tonight I got a phone call informing me of the results of Ashtyn’s blood work she had drawn  today from a home health nurse.  Her complete blood count showed that her white blood cells had not come up much and her absolute neutrophil count was 100.  Not much improvement since finishing chemo February 14th.  An hour later I got a phone call from an oncologist.  I could tell right away from the tone in her voice that the news was not good.  She explained that Ashtyn’s bone marrow still is 85% leukemia cells.  The A.M.L. chemotherapy treatment she went through for 30 days was not the right treatment for her even though it is the typical treatment to start with.  Her leukemia cells continue to look different than any cancer cells the doctors have ever seen.  They are neither A.M.L. or A.L.L. but continue to be undifferentiated leukemia.  The doctors now want to try the A.L.L chemotherapy protocol.  Normally kids can do A.L.L treatment at home but because Ashtyn is already immunocompromised she has to do the chemo in the hospital for at least four days because of her increased risk of infection.  The A.L.L is a 28 day course of chemo that has less side effects such as mucositis.  Side effects are more steroid based such as moodiness and hunger.  Of course the risk of infection is always present.  The doctor informed me that Ashtyn needs to be back at the hospital tomorrow morning.  They will start the new treatment protocol.  In two weeks Ashtyn will receive another bone marrow aspirate to determine how she responds.  If the cancer cells continue to be near 85% of her bone marrow cells, the treatment will be stopped and she will then be put on an intense chemo protocol used for “difficult relapse cancer cells.”  If she shows improvement with the A.L.L treatment, they will finish the 28 day course and again check the bone marrow aspirate.  The goal is to get rid of all her cancer cells (remission) and give her a bone marrow transplant.  Why a bone marrow transplant once the cancer is gone?  Bone marrow transplants are more successful after remission.  In her case, a transplant is needed because the probability of cancer coming back (relapse) after remission is high.

I hung up the phone with the doctor at 6:30 p.m. and cried.  I wasn’t surprised at the news.  I have always known Ashtyn’s body was going to kick cancer the hard way.  I always knew she was going to give the doctors a run for their money.  But it still broke my heart.  To think she still had so much cancer after a month of suffering was disappointing. To know that after 39 days in the hospital and only four days home, Ashtyn had to head back to the hospital.  Ashtyn had a friend over so I chose not to tell her at that time.  I wanted her to enjoy her friend.  I wanted her to enjoy her night.

After packing up clothes, hospital entertainment, and belongings to decorate her room, I finally told Ashtyn at 2 a.m. that she needed to go back to the hospital tomorrow.  “What?” She said.  “But I just barely got used to being home.”  She cried for a moment and then sure enough thought of her blessings.  “Well, it’s a small room so we can spend more time together. And I will be able to eat a lot since the medicine will make me hungry.  And it won’t be as bad as last time.  I can handle 1 1/2 weeks in the hospital if I can come home for a longer period of time.”  That’s awesome!  The doctors said she’ll have to be in the hospital at least four days.  Four days?  We will plan for 1 1/2 weeks and be pleasantly surprised if it is earlier.

Ashtyn: “I am grateful that friends from school visited me this week.  I am grateful my cousin Mckenzie came over yesterday.  I am grateful I am eating with no problem.  I am grateful that I got to relax tonight and watch Amazing Race with you.  I am grateful for the time I spent home.  I am grateful to do the A.L.L treatment because it will be easier on me.  I am grateful for being able to spend time with my family.  I am grateful we get to be in the same room at the hospital.  I am grateful I will still have an appetite.”

Are We Really Strangers?

By | Home Life, Prayers, Triumphs, Uncategorized | 12 Comments

Since Ashtyn was diagnosed with cancer at the end of January, we have received many messages on the website and Facebook  Many times we have heard phrases such as, “I don’t know you.” “We have never met.” “I just came across your blog.” “You don’t remember me Ashtyn, but I knew you when you were young.” “Although I haven’t seen you in years Suzanne, I want you to know I am thinking and praying for you and your family.” “I can’t stop thinking about you and Ashtyn.”

“Ashtyn, we haven’t met, but I found your Facebook page by chance. I have read about you and your family, and shared your story with my family.” Angela

“Ashtyn, you don’t know me, but a few days ago I came upon your story. I read some of the entries, cried, read some more and cried more. Ever since then I haven’t been able to get you off my mind.” Stormy

“After seeing your daughter’s name I had to read her story. (I have an Ashtyn too.) Add us to the list of your growing army. Sending more love and prayers your way.” Brooke

“You don’t know me, but I love and care deeply for you and your family. God Bless you, angel girl.” Gigi

“Even though I haven’t met her and don’t anticipate that I ever will, I have felt such love and compassion and sincere prayer for her. It’s been a blessing for me. I have experienced deeper spiritual joy and awareness. Hang in there, Ashtyn! You are amazing!” Brenda

“I have been reading your story everyday for the past month. I think it is about time I wrote a comment. We have never met and I don’t think we ever will. But I’m praying for you! Get well soon Ashtyn!” J.J.

“So many of your brothers and sisters that you’ve not yet met on this earth are rooting for you.” Swann

“Ashtyn, though we are strangers, I want you to know how happy I am for you! You keep being YOU! You are strong. You can do this! Enjoy your time at home sweet girl.” Tara

But are we really strangers? No one in Ashtyn’s Army knows all the members, but I just don’t believe any of us are strangers. At least to me it doesn’t feel like we are. We all have similar feelings of love for this young girl. We all have been inspired and uplifted in some way. We all feel heavy in our hearts when she struggles and overjoyed in her triumphs. We all want the best for her. If you have read all the blog posts from the time Ashtyn was diagnosed with cancer, you know as much as I know. You don’t know any less than I do and are walking beside us every step of the way. Many people feel they know Ashtyn though they have never met her. We too feel a connection to you. When I receive a message from a “stranger” I don’t feel it is from a stranger at all. I feel it is from a friend who cares for and loves my daughter. How can I not love you back?

I have wondered on several occasions why Ashtyn has touched so many hearts. I don’t know for sure but one thing I do know, it’s not me. I can write a blog all day but no one will care unless their hearts are touched. I believe the Spirit is touching hearts because of Ashtyn’s spirit. She needs you and maybe you can benefit from her as well. It really is remarkable and such an amazing feeling to have a literal connection to hundreds of people. You are not strangers to me.

So you know what we should do? Once Ashtyn has triumphed over cancer and the war is over, we need to have a party. We need to gather together, meet face to face, and celebrate what Ashtyn has accomplished through the help and prayers of her Army. It will only be fitting to celebrate a war that has been won with the Army that got us there. We will gather as non-strangers and Ashtyn will be able to see with her own eyes the hundreds of people that rallied around her. She will be able to see those that lifted her up for months and gave her the strength and power to accomplish what she wouldn’t have been able to do alone. A victorious party is what we will look forward to.

Now for the update: Ashtyn and I continue to not be able to sleep at night and are exhausted during the day. It is unfortunate because we are not awake when everyone else is. I was tired during the day and hardly effective around my house. Ashtyn slept the entire time her siblings were at school, however she was awake the rest of the evening. Even though it would be ideal to be on the same day schedule as everyone else, Ashtyn and I do enjoy the peacefulness of the night. I am sure that is the reason we got into this predicament in the first place. The hospital is very quiet and peaceful at night. Ashtyn preferred sleeping through the chaos of the day and enjoyed the nights when she would not be bombarded by people. Tomorrow we have to wake up and go to the hospital for a bone marrow aspirate and biopsy at noon, so hopefully we will start our transition to being on a day schedule.

Ashtyn seems to have a lot of cravings for different kinds of food. She always craves pickles and salt and vinegar chips. Other cravings that are on the list include a grilled cheese and peanut butter sandwich with a pickle from Melty Way. She has asked for a Nutella crape cupcake from The Sweet Toothfairy. Before going back to the hospital she really wants to go to Olive Garden and Bonsai Japanese steak house, where they cook all the food in front of you. Tomorrow she is already looking forward to having a vegetarian subway sandwich with a bag of salt and vinegar chips. I am so grateful she has an appetite and cravings. She is too. Getting a lot of nutrition will help her during the next round of chemo.

FROM ASHTYN: “Today I was thinking about Disneyland and had a feeling I will be able to go. I thought about eating the big pickles and hard scooped ice cream you get on Main Street. I thought about going on rides like Space Mountain, Splash Mountain, Thunder Mountain, and Matterhorn. I pictured going to the Golden Horseshoe comedy show with the chili bread bowl. We will go to Cars Land and get another pickle that they sell at the entrance. I won’t be able to go on the Grizzly River Run because it would get my broviac line wet or Screamin because the seatbelt will hurt where the line is. That’s OK  I pictured walking early morning to Disneyland and going through the entrance. It would be so cool. I really need to have an absolute neutrophil count of 1000 to go to Disneyland. Yesterday I was still at zero. All I really want right now is to go before I return to the hospital. That is my main goal. Please pray that I will be able to get my white blood cells up. I really hope it will go up within a week and a half. I am worried because I think I will have to go back to the hospital in about 2 1/2 weeks.

How We Got Home

By | Home Life, Looking Up, Triumphs, Uncategorized | 13 Comments

Saturday we really expected Ashtyn to be able to go home.  She had met most of the discharge requirements.  She was awake and alert, walked well, ate and drank enough, didn’t have significant pain, her temperatures were normal, and overall she looked really good.  Thursday and Friday her white blood cell count (WBC) went up.  Though the increase was slight, it was still a sign that she was no longer declining.  In my mind, she was fully ready to go home.

At this point in Ashtyn’s recovery, the doctors were not worried about how many WBC’S Ashtyn had, they just wanted to see the counts trending up.  In order to go home Saturday, her blood work had to show some sign, any sign, that she was still improving.  Ashtyn knew how close she was to going home.  She was hopeful as was I.  To prepare, I packed up a lot of her things Friday night to be sent home.

Since I always stay up until around 4 am, I decided to not go to sleep until 5 am Saturday morning so I could see her lab results.  The results came back at 6 am.  My heart dropped when I saw the numbers.  Not only did they not go up, but the monocytes went from 3 back down to zero.  Bummer.  I went to sleep thinking about how Ashtyn was going to take the news. When she woke up I told her that she would not be able to go home that day.  She cried.  I laid by her and rubbed her back in silence.  I wanted her to be able to express her emotions and get it all out.  She cried for about 7 minutes and then was done.  Instead of sitting in sorrow, she ordered breakfast, ate Frosted Flakes and peaches, and watched The Cosby Show.  For lunch she texted her dad for him to bring her a bean and cheese burrito, crazy bread, gummy worms, a cherry Slurpie, and seasons 5 and 6 of The Cosby Show.

Jason arrived at the hospital an hour later with all she asked for.  Chandler had never before visited Ashtyn in her hospital room and came up with Jason.  Ashtyn’s cousin Hailey and Aunt Wendy came to visit as well.  After eating crazy bread we walked the halls and showed them around the unit.  The rest of the night Ashtyn spent with her dad watching The Cosby Show while I went to Chandler’s hockey game.  Throughout the entire day Ashtyn tried to stay upbeat.  Though there were a couple times during the night when she cried, I could tell she was trying not to dwell on it.  I received this text while I was at my house putting my other kids to bed: “So, I have a sudden craving for chili.  Should we get some tonight so I can have some for lunch tomorrow? Cause we can’t go to the store cause it will be Sunday.  Also, if I don’t go home tomorrow I will tell Grandma Hosenfeld to bring some salmon from the party they are going to have.  I just had an entire hot chocolate and so I have a lot of energy to watch Cosby with you when you get here!”

Sunday morning Ashtyn had blood taken again for labs and again I saw the results at 6 am.  Her WBC’s had not gone up or down.  The doctors had always informed me that she needed to have two days in a row of improvement in her labs to go home.  I laid back down in bed with Ashtyn and started formulating the fight I was going to present to the doctors later that morning.  “Why can’t she just recover at home and continue getting blood work done with a home health nurse?  She is just as safe in her home as she is in the hospital as far as infections are concerned.  I will keep her away from crowds, anyone sick, and use a lot of hand sanitizer at my house.  She has to come back Tuesday anyway for a bone marrow aspirate so can’t we just see how she does at home for two days?  She ate so much yesterday and is feeling good.”  I was fired up and ready to present my argument.  I was almost too fired up so I was glad it was only 6 am so I could sleep a couple of hours and mellow out a little bit before talking to the doctors. At 10 am two doctors woke me up.  “We saw the labs.  They weren’t really good but we think she can go home today and recover further there.”  Did I hear right?  “She can go home today?”  Yes was their reply.  I didn’t have to petition or plead Ashtyn’s case.  Sweet.  “Ashtyn, did you hear what the doctors said?”  Irritated she said, “Mom! I am sleeping! Don’t wake me up.”  Ashtyn had become good at using a coping mechanism of sleeping while doctors talk because she never wanted to know what they had to say.  In her perspective, it’s always scary stuff they talk about.  After the doctors left I asked the sleeping tween, “Do you want me to tell you the news now or later?”  Without opening her eyes and still irritated she said, “If I can’t go home today, tell me the news later.”  I replied, “You can go home today.”  She was suddenly awake, smiling, and in a good mood.

It took a few hours to pack up her things and get discharge orders.  Four hours later we walked out the door where her siblings were there to greet her.  She was relieved to go home.  The night seemed to be a calm and relaxing reunion.

At 9:30 p.m. all the kids were in bed for the night except Ashtyn.  She wasn’t sleepy, so what did she do?  She sat on the couch with a comfortable blanket, a Slurpie and treats, and watched The Cosby Show.  At 1 am she climbed into my bed.  She didn’t want to sleep in her own bed but rather with me.  I gave her several pills to swallow and an IV  antibiotic.  By 2 am she was asleep next to me.  Obviously it takes time to transition into hospital life and it takes time to adjust back to home life.  I’m up at 4 am again.  In a few hours I’ll be taking my kids to school.  Hopefully Ashtyn and I can get back on schedule.

As Ashtyn was falling asleep in my bed she said,  “I like that the hospital room was small.  You were always right there and we could spend more time together.  It’s different than a house that is big and you don’t have to be in the same room.”

Ashtyn: “Today I am grateful that I got to go home today.  I am grateful I went to my Grandma’s house.  I am grateful that I got to eat dinner with my mouth not sore.  I am grateful for movies.  I am grateful for a medical tech that was nice to me the whole time at the hospital.”

It is good to be home.  We are going to soak in the vacation of being home and enjoy every moment.  

HomeAshtynWheelchair HomeAshtynSuzanneAshtyn Driving Home