Relying On What I Know

Ashtyn Getting A Second CAT Scan
Ashtyn Getting A Second CT Scan

Ashtyn is sick.  Very sick.  She can hardly talk.  Can hardly open her eyes.  Can hardly walk.  Can hardly sleep comfortably.  She can’t eat.  Can’t drink. Can’t laugh. Can’t cry.

She listens.  She understands.  She does what she is asked.  She communicates as best she can.  She is kind.  She says “please” and “thank you.” She feels peace.  She feels hope.  She feels prayers.  She feels God and angels near.  She is faithful.  She is strong.  She is patient.  She is calm.  She wants to go home.  She will do what it takes to get there.

At home my kids and I try to follow three rules individually that collectively help keep peace in our home.  1. Read our scriptures every night and pray morning and night. 2. Give 10% of their time in helping me around the house. 3. Be positive.  I asked Ashtyn today if she was staying positive. When she speaks it is as if you are listening to a pure angel, “I try to stay positive by not dwelling on it and think about when it’s over.”

Today we did all we could to try and ease what she is going through.  Occupational therapy and physical therapy worked on her strength to do daily cares.  Her aunt Wendy spent a couple hours doing guided imagery while listening to yoga music as she imagined herself away from her physical body.  She was then able to imagine herself doing whatever it is she wants to do.  We also used massage therapy, music therapy, touch, and silence.

Ashtyn has had a temperature for over six days which is concerning the doctors.  Each lab work that has been done continues to show no signs of infection.  At noon she had a CT scan to discover whether or not a fungal infection is causing her high temperatures.  The CT scan showed no signs of fungus.  It did show left lower lung pnuemonia and appendicitis.

At 7:30 pm a surgeon came to Ashtyn’s bedside and talked to me about the possibility of having her go to surgery to get her appendix out.  The risks of surgery were high due to her low platlet count, her lack of white blood cells, and her overall post chemotherapy condition.  The risks of not taking her appendix out were infection and decline in her health.  I was told that the health care team would come to a consensus and let me know.  I got very nervous.  My hands shook.  My heart raced.  I cried.  I texted family.  I let Ashtyn’s Army know of her need for prayers.  1 ½ hours later the decision was made to not go forward with surgery.  I understood their reasoning.  Her mucositis is so severe that her appendix may be simply inflamed just like everything else.  Even though she is extremely sick the oncologists think she is still reacting within the spectrum of chemo patients, just on the very severe end of the bell curve.  The thinking was if they went forward with surgery and took out her appendix it wouldn’t help in her recovery from chemo.  The doctors also felt that the risk of rupture wasn’t as high as a normal child because Ashtyn doesn’t have the white blood cells that normally help with inflaming the appendix to the point of rupture.  Interesting.  I asked family and facebook friends to pray that the doctors would do what needed to be done.  I am grateful for the immediate response.

At the beginning of the day I felt peace, and then I didn’t, and then I did, and then I didn’t.  During the night I have felt peace.  It is 6:30 am.  Yoga music from Pandora played all night.  She asked me tonight to lay with her because she sleeps better that way.  She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.  When she did fall asleep in my arms or next to me, I couldn’t help but get tears in my eyes laying next to this perfect earthly angel.  I have always, from the time she was a baby, called her my Angel Ashtyn.  Her soul has always been angelic to me with her tender kind heart, her desire to make people feel loved and included, and her testimony of God and her Savior. I am so proud of her as I know you all are.  She truly is handling this trial with the most admirable character. Through the night I have reminded her how loved she is and what a remarkable example she is to us all.

February 3rd I wrote a post called “The Road to Diagnosis “  It was the day she was diagnosed with undifferentiated Leukemia.  The doctors thought that a possible course to try with Ashtyn was to get her home and treat her for a month using the acute lymphoblastic leukemia (A.L.L) protocol and see how she responded.  In my post I wrote:  I was blunt (with the oncologist doctor) about my motherly instinct feelings. “I know nothing about cancer but I don’t believe she will respond to the A.L.L treatment. I don’t know what she will respond to.  My guess is that she is going to give you a run for your money and eventually get a bone marrow transplant.”

Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.  If other chemo kids reacted the way Ashtyn has, they would decrease the dose of which they give.  She has the rarest form of Leukemia and has indeed been giving them a run for their money.  I believe she will continue to do so.  I believe she will go through her cancer course the way God wants and according to His plan.  There is a purpose in her struggles.  There is purpose in her taking the most difficult road.  Good and bad days will come.  I feel our faith will be tested and stretched to the max during her journey.  There will be times when we will be tempted to lose our faith and let doubt come into our hearts.  But I believe with everything in me that she will triumph.  And when she does we will have no question how she got there and why she is alive.  It will not be by chance and it will not be by coincidence.  It will clearly and poignantly be because of God’s mercy and miracles brought about by the faith, prayers, and fasting from you.  My prayers alone will not be enough.  I know that to be true.

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek.  He does love you, and He knows your fears.  He hears your prayers.  He is your Heavenly Father, and surely He matches with His own the tears His children shed.”  Elder Jeffrey R. Holland

*** Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  Her heart rate is high.  Her respiratory rate is high.  Her temperature is high.  She has pnemonia in her lower left lung that we don’t want to get worse. She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.***

12 responses to “Relying On What I Know”

  1. I can’t sleep either. I find myself praying constantly. Ashy!!light that fire that is within you. I have seen it I know its there. You are loved by soo many and we are praying and fasting.

  2. Suzanne & Ashtyn –
    My name is Tracie Stewart. I live in the Wasatch 9th Ward. My family and I moved into the ward just as you were moving out, from what I can gather.

    I started following your blog shortly after Ashtyn’s diagnosis when the Ward members were asked to fast and pray for you. I didn’t realize at the time that there were so many of your family connections in the Ward, and I also figured out that I went to high school with Jason.

    I just wanted to let you know that I was in the congregation on the Sunday in January when your family came to visit for Trisha’s baby blessing. I was absolutely blown away (as were others sitting around me) by the amazing testimonies given by you and your daughters, but especially by Ashtyn. So profound, so strong, so unwavering for such a young girl. I was very touched.

    It is clear you have done an amazing job teaching your family to build a reationship of trust with the Lord. Your family has been through some difficult things, and there are more to come, I’m sure, but I have no doubt you will get through them and emerge even stronger than you already are.

    Please know that I am thinking about you and praying for you during this hard time.

    Tracie Stewart

    • Thank you so much Tracie for your kind and encouraging words. I’m so glad you were able to be there that fast Sunday and hear Ashtyn bare her testimony. When she was 5 years old she bore her testimony in your ward every fast Sunday for almost 5 years. She has always had a testimony that I know is sustaining her now. We very much appreciate your prayers and know she is strengthened by them.
      Sincerely, Suzanne

  3. I don’t know if you guys remember me but I also was in the 9th ward. Sweet Ashtyn used to come sit with me in sacrament and draw me pictures. I loved her powerful testimony she bore one fast sunday. She was so sweet with the most darling personality. Breaks my heart to see the challenges she is going through, but I am also incredibly impressed with her strength and power! We are praying for you Ashtyn and family! ❤

    • Of course I remember you Tessa. Thank you so much for your prayers. Ashtyn does have incredible strength and power because of people like you. Thank you!

  4. My heart aches for the hard things you are having to endure! Your faith, courage and hope are an inspiration to us all. I trust in Heavenly Father’s power to help you through this. You will continue to be in my thoughts and prayers! I love you!

  5. Suzanne. I can hardly read the blogs each day without feeling sick right along with you and Ashtyn. I can’t imagine what you are going through as the mom. We have a constant prayer in our hearts for all of you and the team caring and making decisions on Ashtyn’s behalf. I too believe there is a reason for all this suffering that won’t be told for a while but will ring true when its time. Thanks for your amazing blog. I feel like you are strengthening everyone instead of the other way around. Would do anything you need there or at home. Ashtyn you are a miracle child. Hang in there!!!

  6. I am so very inspired by everyone who is involved on every level, and am praying for tender mercies and miracles! ….with lots of love!

  7. Dear Ashtyn,
    I love and miss you so much. I just don’t know what else to say besides I am praying for you. I haven’t been doing the fasting because I don’t check up on the website fast enough as to when you are doing the fasting. You are stronger and braver than you believe. God and the angels are looking out for you to help you through the bad. But I know that you will give cancer a beating when you recover, because your body will defeat leukemia. I don’t really know what else to say but what I said before, I love and miss you so very much!
    Love, Abigail