Tag

Absolute neutrophil count Archives -

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.”

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