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Going Home

Getting Ready to Get Out of Here

By | Daily Life, Looking Up, Triumphs, Uncategorized | 15 Comments

I knew the first week Ashtyn was diagnosed with cancer that it was going to be a long road.  I also knew that there would be bad days, good days, scary days, peaceful days, unpleasant days, enjoyable days, dark days, and fun days.  Today was a good, peaceful, enjoyable, and fun day.

Nothing spectacular happened… well actually it was spectacular to me.  For her noon breakfast Ashtyn ate 2 silver dollar pancakes, a few grapes, and half of a chocolate chip cookie.  For lunch she ate 1/4 of a Lone Star bean and cheese burrito, 2 pickles, and some juice.  For dinner she finished 3/4 of the bean and cheese burrito and drank some hot chocolate.  For her 2:30 am snack, she ate a pickle.  Now Ashtyn only has to have IV fluid nutrition running through her central line 12 hours a day instead of 24 hours.  That means 12 hours during the day she isn’t hooked up to an IV pole!  That’s so cool!

Ashtyn walked around the unit without an IV pole for the first time ever.  When walking, her endurance is improving.  A few days ago she could only handle walking for about 10 minutes.  Now she can walk for a bit longer.  The most difficult part about walking is leg pain.  For some reason her legs feel sore and the muscles are painful when she walks or moves.  Physical therapy worked on stretching exercises for her to use.  She has never allowed the integrated medical team to work with her.  Integrated medicine provides what I call “pleasant hospital extracurricular activities” such as massage, aromatherapy, and yoga.  Today she allowed an integrated medicine doctor to massage her legs when in the past she always said no.  She enjoyed it and will ask the doctor to use more pressure next time.  Ashtyn has also refused to have them do yoga with her.  Now that she is experiencing so much leg pain after being stuck in bed for so long, she is going to let yoga specialists come to her bed 3 times a week when she comes back for her second round of chemo.

This entire month has been a learning process on many different levels.  One level is learning what we will do differently during the next round of chemo.  We figured out that obviously Ashtyn needs to move and stretch her legs more during the month hospital stay.  I need to move and stretch her legs throughout the day when Ashtyn is unable.  Another thing we learned for next time is how we are going to decorate her hospital room differently.  When we come back we are going to decorate her room with beautiful nature pictures.  Maybe pictures of colorful flowers, serene greenery, and spectacular sceneries.  She also wants to hang a few pictures of Christ rather than Justin Bieber posters.  Ashtyn mentioned that during the next round of chemo she is going to be even more brave.  As long as her mouth isn’t sore, she’ll want to talk to her siblings on the phone more often.  She may even be settled enough to express gratitude more often for all the small acts of kindness that surround her.

Every morning the first thing I naturally ask the nurse is, “what was Ashtyn’s white blood cell and absolute neutrophil count this morning?”  Today her WBC count was up slightly with a ANC remaining at zero.  I’m not sure when Ashtyn will be able to go home but I am hopeful it will be within a few days.  Tonight I started packing up her room.  Six bags were filled and sent home.  As I was gathering her items, I was so touched by the support she received during this first round of chemo.  The gifts, cards, prayers, messages, and Facebook “likes” have brought so much strength.  I feel horrible because I can’t thank everyone individually.  I feel bad because I haven’t been able to write thank you notes for all the kind deeds that have been done.  Those who dropped off gifts and cards have not been thanked.  Personal gratitude has not been expressed for the 30 plus meals that have been dropped off to my house.   Are people wondering if their efforts have gone unnoticed?  Believe me, everything has been noticed and greatly appreciated.

Ashtyn was a lot of fun to be around today.  I wish each of you could spend time with her.  She is funny and has an amazing smile.  Today she wheeled and dealed that if she did ME the favor of taking a shower without much complaint, I would have to massage her legs. She joked around, talked a lot, and smiled.  But the stinker will not let me take a picture of her.  Right when the camera comes out, she won’t comply with a “happy” photo.  “Mom, I’ll take one when we get home.  I will even take one when I am in the car… or even in the wheelchair getting pushed out of here.”  No amount of bribing would get her to let me post a picture of her.  I threatened, “I’ll ground you.”  Confidently she said, “You can’t ground me! I can’t go anywhere.”  My reply, “I can ground you from The Cosby Show or from your Tum-E Yummies juice.”  It didn’t work.  Stinker.  But just to let you know, I am going to post happy pictures of Ashtyn the second I can manipulate her into letting me.  She is such a tween.

So here I am as happy as if I were in Disneyland.  I am hanging out with my daughter watching hours of The Cosby Show.  What parent gets to spend 24 hours a day, seven days a week with their 12 year old?  I feel very fortunate.  This weekend, like every week since being in the hospital, I am going to go home for a few hours and give Chandler, Morgan, and Ethan huge hugs, tons of kisses, and absorb every second I am with them.  I hope Ashtyn will be able to join me this time and that we’ll get to stay home for a little while.