Side Effects

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.”   

17 responses to “Side Effects”

  1. Oh Ashtyn- Im so sorry. Im sorry for your mom and dad too. It’s incredibly hard. You are doing GREAT. Im amazed at your courage and patience. Your family is very special- I know there are guardian angels about you. You are allowed ALL of your feelings. Not just the happy ones. Your feelings are real and its okay to get them out. You have many prayers each day coming your way from lots of people. Dont forgte how loved you are!

  2. Suzanne, you are one tough mama. Ashtyn is so lucky to have you! Heavenly Father obviously has a lot of faith in both of you. Praying hard!

  3. Sweet Ashtyn!!

    You ARE such an inspiration to everyone. I can’t imagine your fears, the unknowns, the frustrations, but remember God doesn’t give us more than we can handle. He IS carrying you during these difficult times. <3

    There is a phrase that I love and continually remind myself of….
    "Life will make sense in reverse."

    <3 <3

  4. Ashtyn…i know it must be hard but we are all here fighting along side u. I can’t imagine how u must feel but dont lose faith and hope. I love u so much. U da bomb diggidy.

  5. What a sweet note.. it’s all so true!

    New experience comes with new lessons! I love that you are giving power to express her emotions without worrying about feeling judged. That is something we ALL need to learn! Suz, you have always been the kind of mom that has empowered her children to DO what they are capable of doing… I love that we can learn from you each day as you discuss the hard issues Ashtyn is facing. Love you! You can do this!!

  6. Ashtyn, I am so glad that your mom is keeping us up to date on how you are doing.. I think of you often and wonder how you are feeling. I am so sad that you are having such trials. Tears were running down my face as read that once again you are suffering with side effects. You are a strong girl. I am part of the huge army that is praying for you to get better. I know you have a testimony, I have witnessed your sweet spirit. Don’t lose hope. I’m sending my love and happy thoughts to you….can you feel it?

  7. My heart just breaks for Ashtyn. I’m an RN in an outpatient clinic working with adults who get chemo and see their struggles; so much harder to hear of a precious young child going through the most difficult of chemo drugs. Will be praying for her to feel at peace and not have horrible drug induced nightmares. May angels attend her and minister to her through the toughest times.

  8. Ashtyn and Fam,
    It makes me so happy every time I drive by Canyon View and see the pretty spring green ribbons! Thank you sharing your story and allowing us to be touched by your sweet spirit. I am so grateful that Heavenly Father loves us enough to trust us with trials so we may be fit for His kingdom.

  9. Argh! I hit ‘return’ before I was done!!!! Hang in there… I’ve seen real life miracles and testify that the Priesthood is the authority to act in behalf of our Savior. We think about you often.
    Angie and Ashlyn Peters 😉

  10. It seems like every family is affected in some way by cancer:( Our battle began last year in May when our 30 year old son was diagnosed with a rare form of cancer. He had just become a new daddy.. We have learned that prayers are answered and miracles happen daily. Suzanne, I do not personally know your family, but I pray each day for all of you. I prayed in the Bountiful Temple this past Friday for all of you. If you have time, you may enjoy a song one of our other sons wrote for his sick brother. It is found on this blog: The song is found on the date July 8, 2012. It is called, A Little While. Ashtyn might like it, too. I am in your army until the enemy is defeated!!!! Ashtyn, like my son, is one of my heroes!!!!! Try to remember that in the eternal scheme of things, this trial is only for “A Little While””.”

  11. Hey Ashtyn,
    Chills run through me knowing all the side effects to those medications. But I know that you can get through every single one of them! I have faith in you! In fact I have never ever lost faith in you! Your name still comes up in class A LOT!!! Cole S. asked if we could all take a field trip to go see you… we all new that he was trying to make you feel at home, but unfortunately all of us (but Cole) new your immune system was to low. All of us want your number so we can text you, but we don’t want to bombard you with texts either. So we thought we could ask your mother (Suzanne) for permission to have your number. Me (Lexi) and a few other classmates are going to get together and make a card for you! Its going to be giant! We hope it will get done sometime soon! You can kick cancers butt! My thoughts and prayers are with you! Keep on depending on God to guide you through all this! I love and miss you!
    -Lexi N.

  12. Hey you can do it! I know you have a whole army behind you and every day since we have gotten lime green and bright blue bracelets that say ashtyns army I have worn mine to show support for you! I will never take it off! You are an amazing person and I love you! Keep punching it is the gut!

  13. Dear Ashtyn

    You dont know me but I am Caren Whatcotts oldest daughter. I read your blog everyday and it touches me every time. Today more so than others. You see my husband and I met a younger man in his mid 30s you got diagnosed with brain cancer a year and a half ago. He unfortunately died today. But one thing I will always remember about him is no matter how the various surgeries and treatments made him feel he always had a smile on his face and you could tell he had more faith in in father in heaven than ever before. I tell you this to not make you sad or to put you down but to let you know that it is in gods hands. But just think compared to eternity your pain and your suffering is short.This mans wife shared a scripture this week. Its Proverbs 3:5 Trust in the lord with all your heart and learn not on your own understanding. I know that you can make it through this and I know that there are things you are waiting and wanting to do that have to be on hold. But in life trials make us so much stronger! Your father in heaven loves you very much and he is carrying you through this!