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A.L.L.

Heading Back

By | Daily Life, Round 2, Trials, Uncategorized | 18 Comments
Hanging At Home

Hanging At Home

From the moment I heard that Ashtyn had cancer, I never believed the path would be easy.  I understood her journey would be a roller-coaster.  I knew I needed to cherish the happy times.  During difficult times I knew I needed to have hope that good times would come again.  This week was a good week.  Two nights ago I said to Ashtyn, “I’m happy. Are you happy?”  She replied, “I am happy because I choose to be and because I am at home.”  Isn’t that true?  First, we have to choose to be happy.  Second, we have to be grateful for what we do have.

At one time or another, life is hard for everyone.  It can be difficult to find joy during the rough times.  However, it can also be difficult to find joy during the good times, because we are just anticipating the next difficult time.  I suppose that is the definition of pessimism.  The problem with being pessimist is that it clouds our ability to see the blessings we have.  Ashtyn is learning to find joy in the journey.  During rough and disappointing times she can hopefully be grateful for what she does have and remember good memories.

Ashtyn has had a few really good days and has felt more happy with each day.  She left the hospital Sunday and has really enjoyed her time at home.  She wasn’t allowed to leave the house but didn’t seem to mind.  Every day she became more and more social.  Tonight she had a couple friends over and hung out with people all day.

On Tuesday, two days ago, I took Ashtyn to the hospital to get a bone marrow aspirate. It was the second time she has had that procedure.  Using a drug called propofol, Ashtyn was put to sleep.  While asleep the oncologist inserted a needle into the bone marrow in her back and withdrew a sample of the fluid portion.  The bone marrow aspirate shows how many and what kind of blood cells are in the bone marrow.  The procedure gives information needed to determine how well Ashtyn responded to chemo and what the next best course is for her.  She was nervous before the procedure but afterwards said, “I want to do that again.”  Apparently she is an expert now and propofol made her feel loopy and funny.  She liked it.

Tonight I got a phone call informing me of the results of Ashtyn’s blood work she had drawn  today from a home health nurse.  Her complete blood count showed that her white blood cells had not come up much and her absolute neutrophil count was 100.  Not much improvement since finishing chemo February 14th.  An hour later I got a phone call from an oncologist.  I could tell right away from the tone in her voice that the news was not good.  She explained that Ashtyn’s bone marrow still is 85% leukemia cells.  The A.M.L. chemotherapy treatment she went through for 30 days was not the right treatment for her even though it is the typical treatment to start with.  Her leukemia cells continue to look different than any cancer cells the doctors have ever seen.  They are neither A.M.L. or A.L.L. but continue to be undifferentiated leukemia.  The doctors now want to try the A.L.L chemotherapy protocol.  Normally kids can do A.L.L treatment at home but because Ashtyn is already immunocompromised she has to do the chemo in the hospital for at least four days because of her increased risk of infection.  The A.L.L is a 28 day course of chemo that has less side effects such as mucositis.  Side effects are more steroid based such as moodiness and hunger.  Of course the risk of infection is always present.  The doctor informed me that Ashtyn needs to be back at the hospital tomorrow morning.  They will start the new treatment protocol.  In two weeks Ashtyn will receive another bone marrow aspirate to determine how she responds.  If the cancer cells continue to be near 85% of her bone marrow cells, the treatment will be stopped and she will then be put on an intense chemo protocol used for “difficult relapse cancer cells.”  If she shows improvement with the A.L.L treatment, they will finish the 28 day course and again check the bone marrow aspirate.  The goal is to get rid of all her cancer cells (remission) and give her a bone marrow transplant.  Why a bone marrow transplant once the cancer is gone?  Bone marrow transplants are more successful after remission.  In her case, a transplant is needed because the probability of cancer coming back (relapse) after remission is high.

I hung up the phone with the doctor at 6:30 p.m. and cried.  I wasn’t surprised at the news.  I have always known Ashtyn’s body was going to kick cancer the hard way.  I always knew she was going to give the doctors a run for their money.  But it still broke my heart.  To think she still had so much cancer after a month of suffering was disappointing. To know that after 39 days in the hospital and only four days home, Ashtyn had to head back to the hospital.  Ashtyn had a friend over so I chose not to tell her at that time.  I wanted her to enjoy her friend.  I wanted her to enjoy her night.

After packing up clothes, hospital entertainment, and belongings to decorate her room, I finally told Ashtyn at 2 a.m. that she needed to go back to the hospital tomorrow.  “What?” She said.  “But I just barely got used to being home.”  She cried for a moment and then sure enough thought of her blessings.  “Well, it’s a small room so we can spend more time together. And I will be able to eat a lot since the medicine will make me hungry.  And it won’t be as bad as last time.  I can handle 1 1/2 weeks in the hospital if I can come home for a longer period of time.”  That’s awesome!  The doctors said she’ll have to be in the hospital at least four days.  Four days?  We will plan for 1 1/2 weeks and be pleasantly surprised if it is earlier.

Ashtyn: “I am grateful that friends from school visited me this week.  I am grateful my cousin Mckenzie came over yesterday.  I am grateful I am eating with no problem.  I am grateful that I got to relax tonight and watch Amazing Race with you.  I am grateful for the time I spent home.  I am grateful to do the A.L.L treatment because it will be easier on me.  I am grateful for being able to spend time with my family.  I am grateful we get to be in the same room at the hospital.  I am grateful I will still have an appetite.”