Infection Archives - Ashtyn's Army

Relying On What I Know

By | Daily Life, Prayers, Trials, Uncategorized | 12 Comments
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.***

We All Have A Part To Play

By | Daily Life, Miracle, Prayers, Spiritual, Uncategorized | 28 Comments

ANC is an important medical term in cancer: Absolute neutrophil count (ANC) is a measure of the number of neutrophils, a type of white blood cell that fights against infection. A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection. The bone marrow is where all white blood cells are produced.

Looking back in time I am absolutely amazed at Ashtyn’s circumstances prior to being hospitalized. A few weeks before getting admitted to the hospital, Ashtyn did feel sick. Mostly she was just tired. Very tired. But she tried to go about her normal activities. Though she missed over a week of school, she continued going to church on Sundays, piano on Mondays, youth group on Tuesdays, and family parties. On January 19th, 1 ½ weeks before diagnosis, she felt awful but insisted on me taking her to the L.D.S Draper temple with Chandler to do baptisms for the dead. The day before going to the hospital she went to the humanitarian center with her youth group. Ashtyn also attended school the day she went to the hospital and had plans to clean a neighbor’s house the following day. She had the strength within to push through extreme fatigue to accomplish the things she wanted.

Why is this so remarkable? Several reasons. The day she went to the hospital Ashtyn’s ANC was 200. Two Hundred!!!!!! Cancer patients aren’t allowed to leave their room without a mask with an ANC that low. They aren’t allowed home until their ANC is at least 500 because of the likelihood of infection, and even then they aren’t allowed to go to school or church for fear of exposure to illness. Ashtyn came to the hospital with an extremely low white blood cell count but wasn’t sick with any “normal” illness. I have no doubt it was a complete miracle that she didn’t come in with pneumonia, the flu, or some life-threatening illness from public exposure. Her entire school was riddled with illness. Morgan was even home sick with a severe sore throat. What a blessing it was to be able to come into the hospital and be able to tackle the diagnosis of leukemia without the complications of having to battle a difficult infection. When Ashtyn was admitted to Primary Children’s they immediately put her on the immunocompromised floor to protect her from infection. She was also given 2 units of red blood cells because her hematocrit was so low.

How was she functioning at home with such low white and red blood cells? And how on earth was she not sick with an additional illness? Total Miracle.

Ashtyn has been on chemotherapy now for 9 days. Chemotherapy kills cancer cells as well as fast growing cells. This means that chemo harms cells in the bone marrow, digestive tract, and hair follicles.

It isn’t a coincidence that the day after Ashtyn visited her siblings she started feeling the effects of chemo. Chandler, Morgan, and Ethan needed the image of Ashtyn being healthy and comfortable so they could envision that through the difficult times. Today Ashtyn began showing signs of the effects the chemo is having on her body. Her ANC is 0. She has no ability to fight infection. Throughout the day I worried that she might be coming down with an infection. Her temperature was slowly rising and it just didn’t feel right. By 8 pm she was 100.5. The doctors treat for infection when her temperature reaches 101. She also had a nosebleed today due to her low platelets and had a platelet transfusion. Her mouth has become extremely sore over the last 16 hours with the start of mucositis which is also affecting the lining of her throat. It is difficult for her to swallow and is painful to eat. She drank a Slurpee and threw the entire thing back up. With all the things she is dealing with, she stayed strong today and tried so hard to stay positive. In the evening, though she wasn’t feeling very well, she addressed all her valentines for her 6th grade class. Ashtyn decorated her own Valentines Day box for school earlier this week. She worried that her classmates would forget to give her Valentines cards since she won’t be there. Ashtyn asked me to email her teacher and make sure they don’t forget her. Though I knew she wouldn’t be forgotten, I sent her teacher an email anyway.

Ashtyn Making Valentines Day Cards For Her Class

Ashtyn Making Valentines Day Cards For Her Class

Ashtyn hasn’t been losing much hair yet. She did stand in front of the mirror today and while holding her hair back, picturing herself bald, she cried. “I don’t want to lose my hair. I will be so ugly.” “Ashtyn, when you are bald you will be stunning. Everyone will be amazed at your glow and beauty. When you are told how beautiful you are, people won’t be saying it just to be nice, they will mean it. But you won’t see it. Over time I hope that you do.”

Ashtyn is currently on quite a few medications. She takes medicine at least every 2 hours throughout the day and night. She is coming to the end of taking her three different chemotherapy drugs (doxorubicin, cytarabine, and etoposide). Other drugs include “Voriconazole” a prophylactic antifungal medication, “Septra” a prophylactic antibiotic, Colace to keep her bowels moving, mouthwash to help with mucositis in the mouth, eye drops to prevent infection in the eyes. Zofran, Benadryl, Phenergan, and Ativan for nausea. Oxycodone and morphine for mouth and throat pain. I am so grateful for all the medications that play a part in helping her get better.

At 8 pm Ashtyn’s Bishop and Stake President came to visit. Before leaving they asked Ashtyn if she wanted a priesthood blessing. She accepted. They put their hands on her head and the Stake President gave her a blessing. The blessing started out sounding generic to what she was in need of. He blessed her that the doctors would be inspired to treat her properly and that she would have peace. Soon though the blessing didn’t seem generic to me anymore. His voice changed and with power he said, “I command these infections and illnesses to leave your body.” He proceeded to bless her with the ability to tolerate everything in her future. She will feel pain and discomfort, but blessed her that she will never have more than she can bear. Afterwards I asked him what he thought when he commanded her illness to leave. He didn’t remember what he had said so didn’t know what it meant. But I knew exactly what he meant. Of course she still has cancer. That wasn’t what he commanded to leave. I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God. By midnight her temperature had stopped climbing and instead had come down from 100.5 to 99.5.

I believe everyone has a part to play in helping Ashtyn, and each individual’s role, whatever that may be, cannot be filled by someone else. It truly is an orchestra with all “instruments” needed. As her church leaders left I asked them if they would please keep her in mind. If they ever feel to come and visit her, to do so right away. If ever an impression comes to mind concerning Ashtyn, to please act upon it. I am asking the same from Ashtyn’s Army. If you ever feel to say a prayer, or share her story, or write a note, or send an encouraging letter, email, thought, or quote, please do so. If you are inspired to write a song, or poem, or help my family and Ashtyn in any way, I ask you to not ignore your intuitions.

Before going to bed Ashtyn had tears in her eyes and with the most sincere and tender voice she said, “Thank you mom for staying in the hospital with me. I know you’d rather be home.” “Ashtyn, there is nowhere I’d rather be than with you.” Surprised, she asked, “Really?” “Really.”
And that is the truth.

Ashtyn woke up at 2:30 am in quite a bit of pain in her mouth and throat. The only thing she could manage to say was, “Mom, can you get on facebook and tell everyone to pray for my mouth so I can eat tomorrow?” She has faith in God and in her Army. So do I.

After Another Days End

After Another Days End