Category

Round 2

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.”