2/17/13   MIDNIGHT

I’m not going to lie to you or sugarcoat it.  I am a “tell it how it is” person.  Ashtyn’s physical body has had a rough couple of days.  Chemotherapy wipes out cancer cells, but in doing so it wipes out other cells as well.  (Her red blood cells that carry oxygen from her lungs to the tissues, platelet cells that prevent bleeding, and white blood cells that fight infection.)  In addition, chemo also kills fast growing cells.  Hair follicles, skin, and the cells that line the gastrointestinal tract are some of the fastest growing cells in the body. God gave us those cells for a reason and you can probably imagine what the body does without them.

Ashtyn’s mouth is completely full of open sores that go down her throat through her gastrointestinal tract.  She is being given a high dose of Morphine to help keep the pain under control.  It is very painful for Ashtyn to speak, so she rarely talks.  When she does talk, her voice is weak and high pitched.  She often has to cough up mucus and cells from her throat.  It is difficult for her to swallow even saliva so she spits the thick mucus into a Kleenex   With the low platelet count and the sloughing of her upper GI tract, blood accumulates in her stomach. A few times a day she throws up the blood because it is nauseating to her.  Morphine is a blessing for her pain but does have some side effects.  It makes her shaky and unstable when she walks.  Her face and legs itch. She also has to wear a nasal cannula tube in her nose that gives her oxygen because of her shallow breathing from being on morphine.  When she sleeps, morphine makes her have vivid and weird dreams where she sometimes will talk.  Ashtyn appears to sleep a lot throughout the day and night but it is very superficial, off and on sleep.  When people talk in her room or do procedures, though she looks to be asleep, she still listens to what is being said.  For the last several days Ashtyn’s temperature has ranged from 101.5 to 105 degrees depending on when she last got IV Tylenol   I have tried wet cloths on her forehead and stomach.  Ice packs have been placed under her armpits and legs.  Nothing seems to get her temperature down other than the Tylenol   Because of her fevers she continues getting blood cultures done to see if there are any infections.  She has also been checked for respiratory viruses.  Each test continues to come back negative for any infection and her temperature is still thought to be a body response to the effects of chemo.  Ashtyn has had several nosebleeds because of her low platelets.  They continue giving her a long list of antibiotics, antivirals, anti nausea medications, and who knows what else.  She also gets platelets and red blood cell transfusions.  Ashtyn keeps her nurses and me busy.

2:45 a.m.

When I wrote that Ashtyn keeps her nurses and me busy, I was not kidding.  After writing the above paragraph Ashtyn’s oxygen saturations began to drop.  Because she is on oxygen she has a sensor on her finger and a monitor that shows how well she is oxygenating.  Ideally she should stay above 90.  Her alarm rang and she was already down to 30 when I got to her.  Loudly I said, “Ashtyn, take deep breaths” as the nurse cranked up her oxygen.  Her saturations did come back up to 90.  I sat beside her in bed, “Ashtyn, take deep breaths through your nose.” The number would go back up and then would soon fall again.  “Come on Ash, take 5 deep breaths.”  Again the number on the monitor would go back up to above 90 and then fall again.  “You need to clear your throat and breathe” I would say in a loud, authoritative voice.  She did exactly what I asked her to do.  And once she did what she was told, she would fall back asleep and stop breathing.  “ASHTYN, wake up!  I don’t want you falling asleep.  You need to take deeper breaths.”  “Mom, are you scared?” she asked so sweetly.  Reassuring her I said, “No I’m not scared but I want you to breathe better.”  Not even able to open her eyes for more than a second she calmly said, “It’s nap time.  I want to go to bed.”  I instructed, “When it is time to go to sleep I will let you but you can’t go to sleep yet.”  This went on for about 20-30 minutes as the nurses were observing, getting a back up oxygen source, and paging the doctor.  “I’d just get the doctor up here quick and decrease her morphine.”  The morphine was stopped.  The doctor got to the bedside and watched as Ashtyn would breathe only when I would remind her to and would then instantly fall asleep and stop breathing.  She had oxygen going in her nose and a mask in front of her face.  The doctor ordered a chest x-ray to see if she had fluid in her lungs.  They tested Ashtyn’s blood to see if it had enough oxygen in it.  I asked the doctor, “could it just be that she is getting too much morphine?”  Not having ever met Ashtyn he wanted to make sure nothing else was going on.  The blood test and chest x-ray came back looking good.  To confirm that her symptoms were due to an overdose of morphine they gave her Narcan, a medication that reverses the actions of morphine.  The Narcan worked immediately.  Her mood changed and she became irritable.  She was nauseated and threw up.  However, Ashtyn was breathing better and was more awake.  She asked, “Mom, what happened today?”  I replied with my own question, “Do you remember Jared coming tonight to play the guitar for you?”  (Which was the same time she had a nosebleed and was spitting up blood and thick bloody mucous while we tried holding oxygen over her mouth).  Completely unaware she said, “No I don’t remember.”  With a reassuring voice I said, “Ashtyn, not much happened today.  You just slept a lot.”

ON THE BRIGHT SIDE:

Ashtyn is coping with amazing peace, calmness, comfort, and strength.  She is optimistic and thinking positively.  I can prove it!!!  After throwing up yesterday she immediately asked for a Frazil,  and not just any Frazil but two large Frazil’s, one tigers blood and one berry.  I knew she didn’t need a large one but her optimistic mind thought otherwise. Sure she was only able to have a few sips but her vision was to drink a large one.  I like her style.  With a mouth full of sores she asked for pickles and Salt and Vinegar chips.  The party pooper that I am brought up the fact, “I don’t know if Salt and Vinegar chips would be good for your mouth Ash.”  Without hesitation she said, “I want them for when my mouth feels better.”  She now has a big bag of Salt and Vinegar chips by her bedside.  Yesterday she asked if she could eat her pickles, “I want four… I mean 6 pickles.”  She took one bite and said, “The vinegar doesn’t really feel good in my mouth.”  Hey, it was worth a try.

She is a fighter.  She has a couple pills that have to be swallowed everyday.  I noticed that if she takes them with a stomach that has blood in it, she will just throw them up.  So now after she throws up I ask her if it’s ok if she takes her pills.  She always agrees even though “it feels like razors going down my throat.”

Ashtyn has a remarkable peace about her.  She is not in misery or suffering greatly.  Instead, she feels the pain but not more than she can tolerate.  She is experiencing the hardship but Christ is lightening the load.  I know this to be true because I see the peace in her face.  I sense the calmness in her countenance.

During the last 2 days Ashtyn’s body has greatly struggled but her spirit has not.  I’ve asked her if angels are helping her.  She knows they are.  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.”

No matter what Ashtyn is going through I know she is being lifted by Ashtyn’s Army and the Army of Angels.  I know she will not be given more than she can handle.  I know that after every tear she sheds, every painful thing she feels, and every struggle she endures God will bless her and make every moment of her sacrifice worth it.

“The most important thing is to trust God and obey His will. Suffering in this life will eventually come to an end, and God’s perfect mercy, justice, and judgment will resolve all the “why’s” we wonder about now. The Lord loves us and sees the eternal view, so we can trust Him to guide our lives. He promises that our trials and difficulties can work for our good if we’re trying to live the right way.”