Category

Looking Up

Getting Back to “Normal”

By | Daily Life, Inspirational, Looking Up, Trials, Triumphs, Uncategorized | 6 Comments

The doctors came to Ashtyn’s room this morning, as they always do, to discuss the plan of the day.  What are the concerns?  How is her status?  What changes need to be made? Everyone was pleased with how well she is doing and noticed her huge improvement.  No changes were made.  Stay the course.

For eleven days the oncologists have cultured all possible blood, urine, stool, nasal, throat, and anything else they could test to determine why she got so sick.  The infectious disease department was involved to make sure she was being covered by every antibiotic, anti viral, and anti fungal medication possible.  Surgery attendings were involved monitoring her appendix.  ENT was included to rule out fungus in her sinuses.  Integrated medicine was there to provide pressure point and massage therapy.  She had physical and occupational therapy working on strength.  Dermatology took a look at her scalp for a questionable mole and will be looking at the rash she has all over her torso tomorrow.  I wish I could write a list of all the viral, bacterial, or fungal infections they have tested for.  I don’t have the list and most of them are words I’m not familiar with anyway.  Every single test has come back negative for any sign of infection. Remarkable. But not surprising.

February 13th I posted “Nowhere I’d Rather Be.”  It was the night before the doctors started doing blood work to test for infections.  In the post I wrote: The Stake President gave her a blessing.  The blessing started out sounding generic to what she was in need of… 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.”…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.”

That blessing has come to be a tremendous help for Ashtyn.  Her body has had such a severe reaction to the chemo.  Even her healthcare team commented that her body was hit abnormally hard.  What a blessing it has been to be infection free, so her body could conserve energy to handle the effects of chemo without having to fight and deal with a bacterial, viral, or fungal infection. “In a priesthood blessing a servant of the Lord exercises the priesthood, as moved upon by the Holy Ghost, to call upon the powers of heaven for the benefit of the person being blessed.” Dallin H. Oaks

Today was a great day, by my standards.  Ashtyn is on the road to getting back to “normal.”  For over a week all she did was lay in a quiet, dark room and keep everyone busy with all that she was going through.  Today she was awake and alert for a few hours at a time.  Her naps were calm and restful.  By the end of the day her temperatures ranged from 98.7 to 100.5.  Her nausea was gone which meant there was no throwing up.  We played two games of UNO with occupational therapy while we listened to music.  She was able to talk a lot more and I was able to understand what she was saying.  When walking to the restroom and back she no longer was shaky and unsteady on her feet.  Ashtyn had energy to be a little irritated.  She doesn’t like that her mouth and throat hurt.  All she wants to do is be able to swallow her spit and a cup of cold water without excruciating pain.  Ashtyn voiced her opinions today when things weren’t where she thought they should be or when she wanted something.  When told to do things she didn’t want to do, she resisted  more.  Her irritation is a good sign to me. The outward fight is in her.  Today she didn’t do anything abnormal.  She did make me scared one time.  When getting a red blood cell transfusion, her heart rate went down to around 70.  A normal heart rate is generally 60-100 for a child her age.  Her heart rate had been high for days so when it dropped to normal I got nervous.  Her heart rate dropping to 70 just meant that her heart wasn’t having to work as hard as previously.  One thing has remained the same.  Ashtyn wants to go home.  She is on the road to getting there and I am so proud of her.

It’s very inspiring watching Ashtyn overcome hurdles.  I know she will be faced with one after another.  Rest will always follow, whether for a short moment or an extended period of time.  We will then be faced with another hurdle to learn from.  One thing we will always keep in mind, “Truly, things always work out!  Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.” Gordon B. Hinckley

The Routine

By | Daily Life, Inspirational, Looking Up, Trials, Uncategorized | 15 Comments

I suppose Ashtyn and I are getting into a routine, though it is an unpredictable, unplanned routine that we take minute by minute.

Nausea and pain is constantly on our minds.  “Where’s the barf bag?” is a question she commonly asks.  It’s like her security blanket, whether she is going to throw up into it or not.  When Ashtyn does throw up she likes me to put one hand on her forehead and the other hand on her stomach.  Along with her constant companion, the blue barf bag, a box of Kleenex is always by her side for the moments of coughing up mucus or spitting out saliva that is too painful to swallow.  A new addition to her bedside companions is the suction catheter that she uses to suction spit out of her mouth.  Several times a day she asks for water.  After sucking a bit of water through the straw she spits it out and wonders when she will be able to swallow again.  Throughout the day she is asked to swab with mouthwash which is supposed to help her mouth sores.  I also try to keep Chapstick on her lips.  She always does what she is asked to do.  Ashtyn sleeps off and on all day.  She often pulls her nasal cannula out of her nose.  As I put it back into her nose I remind her that she needs the oxygen.  There are the moments in the day that her temperature reaches 104.  Damp cloths are put on her forehead and tummy.  Tylenol always brings her temperature down to around 101 only to then increase again.  Medicine continues to be given every two hours to help with nausea and pain.  I often ask her, “How painful is your throat right now when you don’t talk?”  “How much nausea are you having?”

There is nothing more humbling than giving your 12 year old daughter a bed-bath when she is too sick to help.  There is nothing like watching her brush her hair as clumps fall out.  There is nothing like helping a perfect young woman walk slowly to the bathroom making sure she doesn’t fall.   There is nothing more peaceful than giving her a foot massage with lotion while listening to LDS hymns on Pandora.

Sometimes Ashtyn likes music.  Most of the time she doesn’t   Sometimes she likes to be talked to.  Most of the time she wants silence.  Sometimes she wants her blanket on her.  Other times she does not.  Sometimes she will look at her phone for texts.  Most of the time she doesn’t have it in her.  Sometimes she asks for the TV to be on.  Most of the time she falls asleep before she is able to watch it.

There are moments when Ashtyn doesn’t feel she can do it.  “You are strong. You are beautiful. You are doing so good.  Do you feel angels helping you?  Do you feel the prayers of hundreds of people that are supporting you?”

At 1:00 am she asked, “Will you tell people to keep praying for me?”  “Yes I will Ashtyn.  They have the faith that you will start feeling better. Do you?”  Of course she has the faith that prayers will be answered.  Of course she knows God is near.  A few minutes later she said, “I want to talk to you but I can’t”.  She is in too much pain to talk and it’s really difficult to understand what she is saying when she does try.  “Do you want me to talk to you?  I can read all the comments you have been getting on Facebook and the blog.”  She nodded her head.  I read comments written for her.

“Ashtyn, we have joined your army since Grandma told us this AM. Ashtyn and Suzanne, you and your family will be in our prayers. Do not despair as God is with you every step of the way and will bring you through this. We will add your name to the prayer list in our community. We will follow you through this. We love all of you more than just friends, you are family! Kisses & hugs.”

”I’m a complete stranger, but I’d like to be part of Her Army. Ashtyn is incredibly strong and is such a great example of faith. :).  I am asking your permission to think, pray and fast for Ashtyn…for her continued faith and strength. I’d also love to put her name on the prayer rolls.
Sleep well, Ashtyn (and mom)”

“Not a second goes by I am not thinking and praying for sweet Ashtyn.  I feel so much love for her and also feel the love God has for her and your family. What an incredible perspective on life and cancer.”

“Ashtyn, you are a beautiful amazing girl that is bringing a community of strength together. I am a so proud of you and your strength. You are in my prayers everyday. I know that you will overcome this and become happier and healthier than ever before. When you have a bad day just know there is an army of people that love you and are here for you. Whatever you need. Big Hug!”

“Ashtyn, you are amazing! I am so inspired by your positive thinking, your kindness during the toughest times, and your strong and determined spirit. You WILL conquer this cancer!”

“Stay strong Ashtyn!!! You can do this!!!”

“We love you Ashtyn! We pray for you every day!!!!!”

“Ashtyn, you are one amazing kid!! I would never have the courage to go through all of that!! No matter what happens, you will always be loved!! You deserve to go to Disneyland!! I wish I could come with you!! I haven’t been there since 2007!! Hang in there!! Hang on to that strength long enough to go to Disneyland!! Love you!!”

“Ashtyn, You have a whole family of cousins in Washington DC that think of you and pray for you throughout the day! Isabelle, your 3rd cousin who is 7, comes home from school wanting to know if you got your pickles and the latest update. Jake, the 4 year old, even puts in a nightly prayer request for you. You are part of our family conversations and prayers daily!”

“Ashtyn, You have been really strong lately. I hope you will never give up and whatever happens to you, I want you to know that my family is praying for you night and day. Ashtyn, knowing you for as long as I have, you are strong and you never give up. I hope I can visit you sometime.  We love you!!!!”

“Ashtyn, you are going to beat it too! I can tell you are so strong and determined and that is going to get you through this. Keep fighting and we’ll keep praying!”

“Hey 🙂 you probably don’t remember me but I was on your brother’s football team.  I was just hoping you’d be alright.  I will try to send you something!  I’m really sorry for what’s been happening lately and I just want you to know I’m here for you and so is your army!!! :)”

“You don’t know me and somehow I feel like I know you. Ashtyn you are in my prayers, thoughts, and heart. You and your family are very strong and can get through anything, you just keep your pretty head up.”

“Ashtyn, you are in our prayers. We are grateful to share this journey with you through this blog and are now proud to be part of your army. You are never alone.”

“Our family is praying lots for you Ashtyn! I know you don’t know us well, but we think of you often, and you are kept in our thoughts and prayers all day long. Your name is in the Oqquirrh Mountain Temple, too!”

“Ashtyn, I was so touched by your words! I am actually a nurse on the unit you are on at Primary’s. We just haven’t met yet… I’m also friends with Nanette. She told me how amazing you are! I can’t wait to meet you! You are an inspiration to so many! :)”

“Ashtyn, We don’t get to see you much but I am glad we got to visit with you and your family at your grandma Susan’s house a month ago. I want you to know that the Jackson family is thinking of you and is following this blog, fasting and praying daily for your quick recovery. Thank you for inspiring us.”

“You are a beautiful, inspiring person and I am lucky to be able to read all about you through this blog. Keep up the strong attitude and you will make it through this! xoxoxo….”

AND ON AND ON AND ON.

Ashtyn fell asleep as I read to her.

Life Is Good

By | Daily Life, Inspirational, Looking Up, Spiritual, Uncategorized | 10 Comments

Wednesday night was awful.  Ashtyn went to bed around midnight.  I turned the lights off close to 2:30 am, and at 4:30 am Ashtyn woke up and the only thing she could whisper was, “Mom, lay with me.” Sometimes she likes me to lay in her bed and other times she doesn’t   I asked her, as I often do, how much pain she was in on a scale of 1-10, 1 being no pain, 10 being the worst pain imaginable.  She softly said, “10”.  Ashtyn didn’t speak the rest of the night.  I am so grateful she knew what to say that gave me the insight into what she needed.  She needed me to lay in bed and help get her pain under control.  Throughout the night she had a low dose of morphine continuously going through her central line.  In addition to that dose she was allowed to press a button every 10 minutes that gave her extra amounts of morphine.  Ideally she is suppose to push the button on her own when she feels her pain getting worse.  Last night her pain was so intense she couldn’t even push the morphine button.  From 4:30 am until 9:30 am I laid beside her pushing her morphine button every 10 minutes.  I don’t think her pain level ever got below an “8” but at least pushing the button helped.  By 10 am the doctors came to her room and finally increased her maintenance morphine from 0.3 mg/hour to 1.0 mg/hour.  They also increased the amount of morphine from 0.5 mg to 1.0 mg every time she pushes the button.  On top of that they gave her an extra 4 mg dose initially just to get her pain under control.  With peace knowing she was feeling better, I fell asleep and slept until 1 pm.  Ashtyn slept until 3:30 pm.

When I woke up I felt emotionless, burnt out, and numb.  I felt nothing.  I was just existing in a small room by myself with nothing to feel.  A nurse informed me that while I was sleeping a friend had brought her therapy dog to see Ashtyn and another friend had stopped by to say hi.  Miraculously messages and texts started coming from Ashtyn’s Army.  My cousin and his wife from the DC area sent me an email voucher for a 2 hour house cleaning service.  My sister Alisa called to tell me she was going to stop by soon and bring me lunch.  Ashtyn received a bag of gifts from Jason’s work.  Jeni dropped by a box of valentines from Ashtyn’s elementary school.  Two separate youth church leaders brought Valentine’s cards.  Messages of encouragement continued to come from the blog and Facebook.

Are you kidding me?  Have we forgotten how good this world is?  Have we been fooled to think there is no compassion and love left?  Has the negativity of our times clouded our eyes making it difficult to see all the positives?  Does bad seem to dominate good?  I don’t believe for one second that the power of good isn’t running rampant around the world.

With Ashtyn’s Army, how could I not immediately feel full?  How could Ashtyn not completely feel loved?  The power of Ashtyn’s Army is strong.  Some day soon I will write a post on the miracles Ashtyn’s Army has brought into my family’s and Ashtyn’s life.  It’s incredible.

I am so proud of Ashtyn today.  She struggled with such pain from mucositis and never cowered away.  In all her misery she allowed me to help her with a shower.  Even though she threw up in a blue plastic bag while in the shower, she pressed forward.  Ashtyn brushed her hair and teeth and did her oral care with mouth wash.  She forced herself to swallow two pills morning and night that aren’t available in IV form.  Can you imagine swallowing anything let alone pills with a completely raw throat?  Under the direction of the nurse, Ashtyn let me do her sterile dressing change for her central line and she even helped me take off the sticky tape of her old dressing.

Today her temperature ranged from 101.6 to 104.4 degrees.  In the last couple of days the nurses have drawn blood to test if Ashtyn has an infection.  I am not surprised that her blood cultures have not grown any bacteria.  For now the thought is her temperature is a natural response to the chemo and mucositis.  Referring back to my post “Nowhere I’d Rather Be” I shared,  “ I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God.”  I still believe had she not received a blessing from her Stake President on Tuesday night, her blood cultures would have come back positive for an infection.  But for now, she is well.

At 5 pm I was feeling good.  Jason had come up after work to be with Ashtyn and the love and support from Ashtyn’s Army surrounded us.  The doctor came into the room with a smile on her face and said, “I have news about the lab work.  Chandler has been matched and is able to be the bone marrow transplant donor for Ashtyn.”  What an amazing moment that was for us.  I immediately called Chandler.  He reacted like a boy receiving an Xbox for Christmas.  God is so kind.  Referring to my post “I Could Not Have Planned It Better Myself” I wrote,  “From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor.”  In that same post I wrote of the dream Ashtyn’s 10 year old sister Morgan had, “…They compared my tube with Ashtyn’s.  It was not a match.  They compared Ethan’s tube with Ashtyn’s.  It was not a match.  Then they compared yours (Chandler) with Ashtyn’s and it was a match.”

There are many different explanations that can be said about our previous feelings and comments.  It can be said to be a coincidence, a lucky guess, or intuition. To me it doesn’t really matter what others call it.  For me I call it revelation.  “Revelation is communication from God to His children.  This guidance comes through various channels according to the needs and circumstances of individuals and families.  According to our faithfulness, we can receive revelation to help us with our specific personal needs, responsibilities, and questions.”  Morgan had a dream.  I had a quiet spiritual prompting.  Cool!!!

I started the day feeling empty with no emotions and ended the day full of joy.  I love my life.  Yep. I LOVE MY LIFE.  Even living in the hospital, watching my daughter suffer in pain, not knowing what each day will bring other than a lack of sleep and constant medical procedures.  I am away from Chandler, Morgan, and Ethan whom I adore.  I no longer live the life of carpooling, gym, tending my nieces, friends, family time, and being at home.  I am grateful for the life that God has handed to me.  We have a Heavenly Father who cares and has a plan for us. We have a Savior who understands completely and lightens our burdens.  I have four remarkable, special children.  I have friends, family, and Ashtyn’s Army that are raising me up everyday.  Life is good.

There is No Such Thing as a Bad Day

By | Daily Life, Looking Up, Prayers, Trials, Uncategorized | 12 Comments

At the hospital there doesn’t seem to be a big difference between the day and night.  Ashtyn is constantly being woken up every few hours, there are meds to be given at all hours of the day and night, and she has to go to the restroom every 3 hours no matter what time it is.  This morning at 8 am, she woke up and couldn’t talk.  Her throat and mouth were so raw and sore that  it was too painful to speak.  Even when she tried to speak a few words, her voice was weak and high pitched.  With such faith and humility she asked, “Did you tell everyone (her Army) to pray for me? My mouth and throat are really sore. I can’t take pills or eat or drink.  Please pray that my throat will be better and my mouth will be better.”

Much of the day she slept, but it wasn’t a restful sleep.  It was an off and on sleep to escape the pain.  In between sleep she would rarely talk but instead would write a few things on a dry erase board if needed.  Her temperature rose throughout the day and reached 102.6.  Her heart rate reached 130 beats per minute.  She had several nosebleeds and eventually got another transfusion of platelets.  Because of her temperature, they took blood from her Broviac central line to test for infection and started her on two additional types of antibiotics, Vancomycin and Cefepime.  With all of this, she stayed calm and persevered.   By 4 pm the medical team started giving her morphine continuously on a pump.  They also gave her a patient-controlled analgesia (PCA) pump of morphine.   This allows her to not only be given a small amount of morphine constantly but also she can push a button as often as every 10 minutes to get extra morphine when she feels she needs it.  While Ashtyn sleeps she needs an oxygen mask near her face.  With morphine she doesn’t breathe as deep as she otherwise would.  At 6 pm she woke up and asked if she could watch TV.  After so many hours her pain had finally decreased enough to watch TV.  Ashtyn stayed awake for about an hour slowly eating a slushie and then fell back asleep.  She woke up again around 10:30 pm and said, “Mom, I’ve been sleeping most of today.”  Ashtyn checked Facebook and her texts.  She ate some more slushie.  Her pain was tolerable, her temperature was down to 100.4 degrees, and her heart rate dropped to 104.  She fell back asleep by midnight.

From the beginning we always knew there would be good days, followed by bad days, with good days that would come again.  Isn’t that how life is?  Some days, weeks, and months are good and others aren’t so good.  But good and bad days depend on how you look at them.  Today could be looked at as a bad day for Ashtyn, and it was.  But it was a good day for her too.  She was blessed with more loving comments and support, a visit that lifted her spiritually, and another visit that took her mind off her pain.  Her doctors and nurses did some remarkable things to help ease her pain, decrease her temperature, and help her not bleed uncontrollably.  Sure it was difficult but she coped well.  At the end of the day she is feeling better than when she woke up.  Her pain is not as severe as it was and she has the medications needed to keep her pain under control.  Her temperature is being treated and her blood is being tested to see if she has an infection.  Her strength from within is showing.  She is coping well with being in the hospital away from everything she loves.  She is handling the pain and she is emotionally and spiritually stable.  For today, what more could I ask for?

“There is no such thing as a bad day; just bad moments that we choose to take with us all day long.”
— Anonymous

Ashtyn’s Siblings Come To Visit

By | Daily Life, Looking Up, Triumphs, Uncategorized | 10 Comments

Yesterday Ashtyn really wanted Chandler, Morgan, and Ethan to come and visit her.  She hadn’t seen them in 12 days and missed them terribly.  I think Ashtyn also needed to see them to help recognize her strength and ability to be apart from them for now.  My other kids needed to see Ashtyn healthy, happy, confident, strong, and optimistic so that they can feel the same.

The doctors and nurse were completely supportive when I asked if Ashtyn could have her siblings visit her. They said Ashtyn could go just outside the unit and spend as much time as she needed with her family as long as she kept her mask on.  There is a conference room adjacent to the lobby where she would be allowed to sit.  I asked the doctors if she could use the conference room which would protect her from all the people walking in and out of the unit.  They had no problem with me using the room.

At 5:30 pm Jason brought Chandler, Morgan, and Ethan up to the 4th floor.  We got security to unlock the large conference room.  Ashtyn did her hair for the first time since being in the hospital, got her shoes on, put the mask on her face, and walked with her IV pole out of the unit into the conference room.  Their greeting was quiet.  We hugged, talked, and ate pizza.  Being in the conference room was such a blessing and changed everything.  We had privacy to be ourselves.  Since there wasn’t anyone else in the room besides us, I was fine with Ashtyn taking her mask off.  In the medical field my decision was completely against logic.  She has no ability to fight illnesses.  I wouldn’t want her to fight a cold or flu for several months just because she got sick from someone else.  However, with my motherly feelings, Ashtyn needed to have that mask off and be herself for the moment. My kids needed to see her without the mask as well.  They needed to see Ashtyn for who she really is:  A strong, confident girl.

After 2 hours Ashtyn was ready to go back to her room.  She cried with the reality that she couldn’t go home with them.  After hugging them she said, “Let just do this.”  She put her mask on, said goodbye, and walked back to her room.  Ashtyn felt empty.  She felt sick and nearly threw up.  It didn’t take her long to regain composer.  I have an previous neighbor who gave Ashtyn many small little presents that she is allowed to open daily when she feels she needs to.  She started opening one gift after another.  After opening over 10 gifts she said, “this will be my last one.”  The gifts filled some of the void.

Ashtyn had the strength within to enjoy the rest of the evening relaxing in bed watching Good Luck Charlie and eating Cup of Noodle soup and Cheetos.  She is determined to do what it takes to fight her cancer so she can go home.  She knows that every day in the hospital is another day closer to going home.  Today Ashtyn ate 1600 calories, had the energy to go the entire day without a nap, and was able to comfort her brothers and sister.  Right before bed Ashtyn told me she was glad her siblings came so she could show them that she is doing well. She’s my hero.

Thank you to Casey for using his photography skills to document our evening.

no images were found

I Could Not Have Planned It Better Myself

By | Daily Life, Inspirational, Looking Up, Uncategorized | 6 Comments

In the past I have always been one to plan. For years my Franklin Day Planner never left my side. I then converted to Google calendar downloaded to my iPhone.  Each morning I had a good idea what my day had in store. Since being in the hospital I live hour by hour, not knowing how the day will go. I have no idea what I will be doing until I’m doing it. I have no problem just going with it. Today was another day totally guided by God. It was a day full of tender mercies orchestrated by Him who is in charge. I handed over this trial to God the moment I was faced with it and have been very happy to do so.

The one thing that was on the schedule: Chandler, Morgan, and Ethan were going to be at the hospital at 9:30 a.m. to get their blood drawn to find out if any are candidates to be a bone marrow donor for Ashtyn. When they got to the hospital they relayed what Morgan had told Chandler this morning when she woke up. “Chandler, I had a dream last night. I dreamt that you, me, and Ethan went to the hospital and got our blood drawn. Then they had four tubes of blood. Yours, mine, Ethan’s, and Ashtyn’s. They compared my tube with Ashtyn’s. It was not a match. They compared Ethan’s tube with Ashtyn’s. It was not a match. Then they compared yours with Ashtyn and it was a match.”

Morgan was glad that in the dream Chandler was the donor. Chandler felt excitement to be a donor. “I want to be the one to help Ashtyn. It will show that we are connected and I want to help my sister. Along with the fact that I think it would be funny to come out of anesthesia loopy like Ashtyn did and breathe the tasty air when going under.”

From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor. Chandler sometimes has an intense personality that pushes Ashtyn’s buttons. Ashtyn has a completely different dramatic personality at times that pushes Chandler’s buttons. There are moments when love is felt for one another but the majority of the time they drive each other crazy. I know that if any of my kids need to connect, it is Ashtyn and Chandler. They are 19 months apart and are now learning that their bond is much stronger than they thought. We will know in one week whether any of them are matched to be a bone marrow transplant donor for Ashtyn. Please pray during this week that one of my children will be a match.

Morgan getting her blood tested

Morgan was the first to get her blood drawn. After she was poked, with surprise she asked, “That’s it?”

When the blood was coming out into the tube, Chandler did not like the idea that a needle was in his body. But “I wouldn’t pass up a chance to help Ashtyn.”

When the blood was coming out into the tube, Chandler did not like the idea that a needle was in his body. But “I wouldn’t pass up a chance to help Ashtyn.”

Ethan was quiet and brave which is very much his personality. When he got his four shots for kindergarten, he hardly made a sound.

Ethan was quiet and brave which is very much his personality. When he got his four shots for kindergarten, he hardly made a sound.

All done! Posing with the stuffed animals they got for a job well done.

All done! Posing with the stuffed animals they got for a job well done.

 

From the time Ashtyn has been in the hospital, she has not wanted to see her siblings. Chandler is almost 14 and is allowed to come visit in her room. However, Ashtyn has said, “Tell Chandler not to take it personally but it will just make me too sad.” I completely understand what she feels. It would break her heart if she had to watch her siblings walk out the door when her entire soul wants to go with them. She misses them so much and knows that they are going home to where she so desperately wants to be. Ashtyn did not see her siblings today.

How are the other kids handling this new challenge?

CHANDLER is a boy who won’t open up easily. Even if it is clear that something is upsetting him, he will never admit that anything is wrong. Despite my plea for him to not bottle stress up, his philosophy has been “no one can do anything about it anyways, so why talk about it.” Chandler did open up to me today which I am so grateful for. This morning as we walked down the hall to get his blood drawn Chandler said, “I’m hatin it.” I asked, “What’s the most difficult thing?” He said, “You aren’t there to take care of anything.” Later in the afternoon he opened up again. “It’s hard because you aren’t around. It’s also difficult because of the repetitiveness of everyone talking about Ashtyn and cancer all the time.”

MORGAN is a strong girl who sometimes chooses to keep her emotions to herself if she feels they aren’t “good” emotions to have. For instance, if she is mad she will hide it because she doesn’t feel it is right for her to be mad. The past year I have tried to get her to always share her feelings so I can help her through them. When I saw her this morning, she reacted by crying. She misses me but misses Ashtyn terribly. “I don’t see how I will be able to leave the hospital without seeing her.”

ETHAN is a child who has never been a crier. When he is stressed, mad, has hurt feelings, or is in physical pain, he will not cry. Instead he stays quiet but his face tells everything. His eyes cry and his mouth sinks. Throughout the day it seemed like he was doing fine. At 6:30 p.m. he was supposed to go to a birthday party. When Ethan was about to leave he hugged me tightly and began to cry. His cry was audible, which is very rare. I asked him what was making him the most sad. “I miss Ashtyn.” He chose not to go to his best friends party and instead stayed home.

From all that, did you gather that I emerged from the hospital today? At 3 pm I actually got out of my PJ pants, put on jeans, ran a brush through my hair, and headed out the door into the real world. I felt like a lifeless zombie. Morgan was on a weekend retreat with a friend. Jason was spending the evening with Ashtyn. I was going to have a mother/son night with my boys. Where’s the best place to take my sports addicted sons? Scheels: the biggest sporting goods store I’ve seen. We hadn’t had a chance to go yet. Chandler was in heaven. He even told me so, several times. We checked out the BYU section, the small hockey area, walked around the store stopping to play a “bowling game”, and hit pucks at a virtual goalie. Chandler picked out a lime green BYU t-shirt for Ashtyn and a lime green bracelet made out of hockey laces for him to wear to support her.

After Scheels, we picked up Chandler’s friend Oliver and headed to my house so Chandler could watch the Ducks hockey and Jazz basketball games.

Such TENDER MERCIES were given to my family TODAY. God orchestrated a night that worked out perfectly for our needs:

CHANDLER: I was able to spend time with Chandler doing something he really enjoyed doing. He said, “Mom, I loved tonight. I haven’t had this much fun with you in a long time.” Shelley was inspired and had arranged earlier to have her son Oliver hang out with Chandler. Chandler rarely hangs out with friends. He had such a great time having Oliver over and really needed that social interaction. But that’s not all.  Jason’s friend Dave was also inspired to come over, make Chandler’s favorite malts, and watch the games with him.  A neighbor, Joy, dropped off pizza and crazy bread, which is one of Chandler’s favorites.  It was the perfect addition to his unplanned boys night.  Why did Joy bring pizza?  How did Shelley know to get the boys together tonight?  How did Dave know to come over?  They listened to the Spirit, maybe without even realizing it.

 
 

ETHAN: I was able to spend time with Ethan holding and loving him. He didn’t feel right about going to the birthday party and I believe he made the right decision. It gave me three extra hours to give him love.

MORGAN was invited to go out of town with a really good friend Friday night to Saturday. She is then going to a slumber party with some of her aunts Saturday night. I would predict her need was to leave her worries behind for a weekend.

ASHTYN has missed her dad so much. She didn’t feel like having visitors all day and night. Little did she know that Jason was going to be with her for nine hours. She got alone time with Jason that she hasn’t had in a long time. They made her valentines box for school, talked, and watched movies together.  She had a great night with her dad and was able to eat 1500 calories today … barely. “Are my taste buds always going to be like this because this Mac and Cheese tastes like crap and this Wendy’s frosty tastes like poop.”  She gagged in disgust when she ate the frosty.

Jason got to spend the day with Ashtyn

Jason got to spend the day with Ashtyn

JASON hasn’t been able to spend any time with Ashtyn without someone else in the room. He had the same need that Ashtyn had, some one-on-one bonding time with his daughter.

ME: I didn’t realize my need to get out of the hospital. I left the hospital a zombie and came back with energy and life.

I’m back at the hospital to sleep in the bed that will be mine for a few months. I understand Ashtyn’s longing to go home and her broken heart of missing her siblings. As I walked around the house my sadness for her tugged at my heart with a deeper pain. Our home is not the same without her. There is an emptiness in her room, though it looks the same. We will do whatever it takes to get her home for good as soon as possible. Thank you for joining us in this effort. Ashtyn deserves to be home. Her family needs her there. When this trial is complete, I am excited for her to lay in her bed and smile with joy basking in the fact that she’s home.

As good as it gets in the hospital

By | Daily Life, Looking Up, Prayers, Uncategorized | 18 Comments

I’m sitting with Ashtyn watching Ratatouille and am feeling such joy.  Yes you heard me, joy.  Joy because of the day Ashtyn had.  Joy for the support that surrounds us.  Joy because of peace.  Joy because of hope.

Today was the best day yet. What made today so good?  Nothing went wrong.  On top of that, the day had a peaceful, fun vibe and Ashtyn accomplished much in her preparation and empowerment.

Last night right before going to bed we talked about the possibility of getting an NG tube today because she hadn’t been able to eat enough calories on her own.  She was adamant about not getting a tube.  Ashtyn had already had an NG tube placed when she got contrast for her CT scan and hated it so badly she didn’t want to do it again.  She had a cup of Top Ramen by her bedside.  With determination in her eyes and disgust in her face she forced a few bites of the noodles.  In a matter of minutes she threw it all back up. “Ashtyn, don’t worry.  We’ll try again tomorrow.”

She woke up this morning at 10 a.m. feeling good.  First thing on the agenda was to eat.  For breakfast I ordered some applesauce and toast.  She ate the apple sauce without a problem and forced down a piece of toast.  An hour later I sat with her entire healthcare team while they were on rounds outside her door. They discussed her progress and plan.  I asked if they would give her one more day to prove she could eat enough calories on her own.  They agreed though they didn’t think she could do it.  I was skeptical as well.  After talking with the doctors and dietitian I went back into the room.  I’m not proud to admit that I tried talking Ashtyn into an NG tube.  “I don’t want you to be stressed all the time trying to eat enough.  The placement of an NG tube isn’t that bad if you relax.  Once it is in you won’t have to stress about eating all the time.  You can eat as much as you want and whatever calories you are short, they will infuse into your stomach over night.”  She would have nothing of it so we figured out something fattening that would likely be tolerated to start building up her calories.  Cheesecake.  I hopped on to facebook and asked for everyone to pray that Ashtyn’s stomach would be able to handle 1800 calories.  She then began to eat her cheesecake with cherry sauce.  Ashtyn ended up eating the entire piece. After she was done with the cheesecake, she had an hour before her Dad brought a pinto bean burrito with rice, cheese, and sour cream from Cafe Rio.  I was amazed to see her eat ⅓ of it.  Those are big burritos!  Later for dinner she had 300 calories of Dibs ice cream bits.  My friend Rain brought her another Cafe Rio burrito for dinner.  (Apparently because I left her other burrito out in room temperature for more than an hour, I had to throw it away.  That’s good to know.)  Unfortunately after her Dibs, she wasn’t hungry for the burrito so I put it in the fridge for tomorrow.  For Ashtyn’s late night snack she had 3 popsicles mashed into a slushy.  (I took three red popsicles and separately put them in the microwave for 20 seconds.  I then mashed the wrappers a bit and poured the thick slush into a cup and threw away the sticks.)  That was a 210 calorie snack.  By the end of the day I estimated that Ashtyn consumed nearly 1500 calories.  Success!   Yesterday’s prayers were answered that gave her the desire to shower and eat.  Today, prayers were answered that calmed her stomach.

Yesterday I mentioned that right now is the time for Ashtyn to prepare for battle.  I sense that it’s my time to prepare as well.  I have come to rely on the support of Facebook messages, blog comments, texts, phone calls, visits, and the prayers of others.  I would panic if I didn’t feel rallied around.  I am strong for Ashtyn because everyone has been strong for me.  Today I had a couple moments where I got a glimpse of what it would feel like if I was doing this without Ashtyn’s Army.  The lonely feeling caused sudden panic.  I could not do this without the support I am getting.  I feel lifted by every single communication from each of you.

There is so much more I want to share with you.  I want to tell you about her inner strength that she is beginning to recognize.  I want to share with you the growth I have seen in her in only one week.  There are exciting coping skills she is learning.  I’ve noticed independence and emotional stability that I want to relay. There is clear proof that our prayers are being answered, but I am having such a difficult time writing, thinking, and feeling…. I’m tired.

I’ll end with this for now:

A few hours ago I asked, “Ashtyn, you had a good day today, right?”  She said matter of factually  “As good as it gets in the hospital.”  I started “lecturing” as I commonly do, “Well I want you to remember today.  Today was a really good day.  You will have lots of good days like these.  When you are having a really bad day, please remember today, and know that no matter what, you’ll have good days again.”

It doesn’t matter what religion you are.  A prayer is a prayer, and they are all being answered.