Just Another Day

After Ashtyn’s second trip to the ICU exactly two weeks ago, I wrote, “from now on I will constantly be on high alert with her. My eyes are more wide open for when her body does something out of the ordinary. My heart is more open to when I feel things aren’t quite right.” That philosophy paid off, though there is always more to learn.

For the past few days there were slight and subtle changes in her health. Sunday her stomach started hurting her. She had chemo that day so I wondered if that was the cause. Monday her stomach continued to hurt off and on. Her heart rate started to increase ever so slightly. Tuesday her temperature was higher, though still within normal limits. Wednesday her heart rate was a bit high, temperature remained on the higher end of normal, but nothing to cause alarm.  Though she appeared stable, I felt uneasy.  I asked for them to test her for C-Diff even though there were no signs of it other than occasional stomach cramping. The test came back positive. I continued to be on edge and wondered if I should leave the hospital to take Chandler to dinner while Jason sat with Ashtyn. With tears in my eyes I voiced my concerns to a staff friend. I was reassured that she would be fine and would be looked after.

Thursday started out normally. Ashtyn slept in until 11 am. Upon waking up the staff informed her that she needed to drink 3 cans of rootbeer with contrast for a CT scan. Ashtyn was up to the task and started drinking at noon. By 1:45 pm the rootbeer was in her stomach and she was ready for her CT scan. I looked at her arms and noticed a mottled appearance. Mottling happens when blood vessels change in the skin causing a patchy appearance. I didn’t like what I saw. I pointed it out to the nurse who immediately took her blood pressure. It was 108/38. Not good. The “108” is perfect but the “38” should have been greater than 50. Little did I know that the wide spread in the two numbers is a beginning sign of septic shock and occurs when the blood vessels dilate in a response to illness. A high heart rate is another sign they look for in septic shock. Her heart rate was 130. I immediately posted on Ashtyn’s Army facebook page, “Prayers are needed for Ashtyn right now. She is showing beginning signs of septic shock with low blood pressure, high heart rate, and mottled look to her skin. What’s going on? Let’s pray to find out. Please pray that the cause of this illness will be discovered and all necessary actions will be done.”

The doctors started an infusion of 1 liter of fluids. Afterwards her blood pressure was lower. Wrong direction. They gave her another liter of fluid. In the meantime she needed to go to the bathroom. Since she had a decent top number on her blood pressure, I took her to the bathroom. She felt completely fine and got in bed afterwards. A few minutes later she looked at me, “Mom, I feel weird.” The resident was leaving the room. “Stop.” I told him. “She is feeling weird.” Ashtyn again said, “Mom, I am feeling really weird.” Her eyes rolled to the back of her head, she lost consciousness, and her lips turned blue. I asked the nurse and resident to call a code. They couldn’t find the code button because it wasn’t behind the bed but rather behind the med cart. I ran into the hall. No one was there. I ran down the hall. No one was there. I started yelling “Call a code! Call a code!” A code was called and then canceled before I got back to the room because, in the meantime, Ashtyn woke up and became alert. She was then watched over constantly by doctors until they were able to take her down to the pediatric ICU.

By 4 pm she was in the PICU and everything was calm. Additional antibiotics were started, IV fluid continued to infuse, and vital signs were taken every 15 minutes. Everything looked great. Her blood pressure was completely normal without the need for blood pressure medication. Why was her body able to maintain a good blood pressure at that point? Why were signs of vasodilatation gone? There was no answer to the questions. From then on out, her blood pressure remained normal the rest of the night.

How was Ashtyn during this entire time? Calm, quiet, brave, and she just went with the flow. Initially when she realized we were concerned about her blood pressure she said, “let’s just go to the PICU. I’d rather that than sit here and wait.” Other than that, she didn’t have a lot to say. Once in the PICU she just wanted me to sit with her and rest while all the staff did what they needed to do. She went on facebook and was excited that “Cloudy With a Chance of Meatballs” is coming out with a sequel. I had to leave the room for shift change, based on the PICU rules, and was gone from 7:15 to 8:00 pm. Ashtyn asked me to go to her room and bring back nail polish and The Cosby Show, 5th season. I got a few texts from her while I was gone. “They are going to see if I can do a CT scan.” “They are sending contrast down. Two cans of rootbeer.” Ashtyn truly was at peace the entire day, as if it was just another typical day at the hospital. Having a calm spirit makes all the difference.

At 9:30 p.m. Ashtyn was wheeled to the CT scanner to look for fungal infections that might be hidden. They did IV and oral contrast. Immediately upon completing the CT scan, a surgeon walked by the pictures and noticed right away that she has colitis. He came right into the room and informed me that colitis is dangerous, especially for individuals who have no white blood cells. Colitis is an infection and inflammation of the colon. The risk is that it could perforate, causing a hole in a portion of the colon, requiring surgery and a high risk of infection. His suggestion was for her to not eat for 10 days, rest the colon, and fight the infection with antibiotics. Ashtyn was so sad to hear she won’t be able to eat for awhile. We were looking forward to eating good food while watching LDS conference this weekend. Not eating will be tough and she will need lots of prayers for her stomach and colon this week.

What an amazing day. Miracles. Blessings. Tender mercies. I am grateful that Ashtyn’s unstable blood pressure became apparent right before heading down to the CT scan. I’m grateful it occurred in her room rather than in the halls. After fainting in bed, I am grateful Ashtyn regained consciousness. At first I felt dumb about calling a code. However the charge nurse assured me it was the right thing to do and to be grateful that Ashtyn pulled herself out of it. Once in the PICU, I am grateful her blood pressure remained completely normal. There is no explanation for that. I am grateful that the PICU nurse questioned the doctors, wondering if they still wanted the CT scan since Ashtyn was stable. Without the CT scan, we would not have known she has colitis. She would have been allowed to eat, which wouldn’t have been the best for her. During all of this, the staff on the floor called to tell me that there were new kids coming to the hospital and they needed Ashtyn’s room. “Are you kidding me? You need me to move all of our stuff out of her room to my car even though she will likely go back to the floor tomorrow? We have so much stuff but I totally understand the staffing reason. I will be right up.” So I started packing up her room. Before it was all packed up, I was thrilled to hear that another option was worked out and I didn’t have to move our stuff out of the room.

Ashtyn was blessed today. I am so grateful that she was diagnosed with colitis so she can now be treated properly. I am grateful for her calm spirit. I am grateful Ashtyn felt peace and comfort today.

Hindsight is 20/20 and I Like What I See

A month ago, on March 3rd, I wrote a post titled “Faith.” In it I wrote, “when I first heard that Ashtyn had cancer some thoughts came to my mind. ‘Suzanne, this isn’t yours. God is the orchestrator. Hand it over to Him.’ Gladly. I instantly handed over my daughter to God knowing He was completely aware of her and had a plan. I was not in charge. I trusted God completely. I had faith in His will.”

Hindsight is 20/20 and I like what I see.

First: Ashtyn went through a very difficult round of chemo in February. From the February 20th post, “Relying on What I Know,” I wrote “today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.” After all she had gone through, her cancer cells were not affected at all. Cancer was still in full force. Was all the suffering a waste of time? No it wasn’t  Was the entire month of February worthless? Not at all. Ashtyn grew a lot from the experience as she wrote in her post “From Ashtyn.” She is also better prepared for what may come in the future. When she was first diagnosed she cried, “I can’t do this!” My response was, “You can do this. You are strong, you just don’t know it yet.” After what she went through in February, she now knows she is strong. Today she mentioned, “I’m scared to do a bone marrow transplant.” The doctor and I assured her that after what she went through with the first round of chemo, she is completely capable of handling a transplant. She knows it’s true.

Second: At the beginning of March we prayed that Ashtyn would recover from the first round of chemo and be able to go to Disneyland before the next round. After prayers and fasting Ashtyn’s white blood cell count didn’t recover at all and there was no Disneyland trip. As I’ve said before, sometimes the answer will be “yes.” Sometimes the answer will be “no.” Other times the answer will be “yes, but not right now.” What a blessing it was to get a “not right now” answer. Now that I have more clarity, wouldn’t it be better to go to Disneyland cancer free right before the bone marrow transplant? That is now our hope. Hopefully in a few weeks Ashtyn will have a bone marrow aspirate that will show no new cancer growth and have an absolute neutrophil count of 1000. (Neutrophils are the white blood cells that fight infections.) At that point Ashtyn would be allowed to go to Disneyland as the doctors prepare for her bone marrow transplant. She would then return to the hospital rejuvenated physically and emotionally, ready to rock the bone marrow transplant. I ask for that to be our specific prayer for the next several weeks.

I am grateful I handed this cancer trial over to God. His vision is much more remarkable than what I would have come up with. His plan is much more merciful than what I could have provided. I am grateful He is in charge. He knows Ashtyn, my family, and my needs more than I do. “For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.” Isaiah 55:8

In the midst of cancer, what if we would have turned our backs on God and refused His help? What if doubt replaced our complete trust in Him? What if negativity crowded out our peace? What if bitterness replaced our love for Him? What if fear replaced our faith? What if we hardened our hearts toward God preventing His merciful hand to affect our lives? What if we denied our Savior’s goodness not allowing Him to lighten out burdens? What if our hearts left no room for the comforting peace of the Holy Ghost? I shudder to think what life would have been like the last 2 months had we not had Their constant companionship and blessings.

2 Nephi 2:25 “Adam fell that man might be; and men are, that they might have joy.”I now know what that means. In our brightest moments and darkest hours, we can have joy. Our family has experienced that. We have had joy in our darkest hours. How? By simply having faith and trust in God with gratitude in our hearts. To know and be able to say what President Gordon B. Hinckley said. “Things will work out, it isn’t as bad as you sometimes think it is. It all works out, don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.”

Easter Miracle

After Ashtyn’s cancer cells didn’t respond to the hideous first round of intense chemo in February, I believed the cancer wouldn’t be killed with the second round of chemo either.  The second round included less intense drugs and up to this point, she had done everything the difficult way.  I simply didn’t think the A.L.L chemo regimen would work.  My thought was that the doctors would have to find a new batch of intense chemo drugs customized for Ashtyn that would be given over another month, and then her cancer cells would respond.  I didn’t want Ashtyn to fear or get frustrated if the second round of chemo didn’t work so I prepared her for that possibility.  I told Ashtyn from the time she started the second round of chemo that I didn’t think it would work.  I was wrong.  Completely wrong.  I have never been so grateful and happy to be wrong.

The results from the Friday bone marrow aspirate came back showing no cancer cells. None. I’m still in slight disbelief. I thought back to the many prayers that have been said for Ashtyn. In the post “Ashtyn’s Army” I wrote, “There are church congregations around the world remembering Ashtyn.  Her name has been added to prayer chains in different religions and is on the prayer lists at LDS Temples in many locations.  She has been enrolled under the special patronage of Our Lady of Lourdes in France and Illinois.  There are many families who pray for her morning and night.  Children include Ashtyn in their prayers daily. Fasting and prayers have been dedicated to her with her specific needs in mind.  Hundreds think of Ashtyn and hope the best for her.” I know for a surety that Ashtyn’s cancer would not have been killed by those chemo drugs had it not been for the faith of her Army.  Of that I am absolutely certain.

Where do we go from here?  The chemo killed all of the cancer cells however it also killed all of her normal white blood cells. Ashtyn’s body needs to produce white blood cells without new cancer cells returning.  The current round of chemo is complete other than one more drug that will be given in four days.  In the meantime she will stay in the hospital as her bone marrow starts making white blood cells.  Now that her bone marrow is not full of cancer cells, there is plenty of room for new cells to grow.  In two weeks the doctors suspect that she will have a steady incline of white blood cell production and will be able to go home for at least a week to further recover.

From years of cancer research and experience it has been shown that once cancer is gone, if treatments stop immediately the likelihood of cancer returning is significantly high.  Therefore the fight must go on.  In roughly three weeks Ashtyn will hopefully have built up a decent amount of white blood cells.  Her absolute neutrophil count (ANC) will hopefully be near 750 to 1000.  She will then have a bone marrow aspirate to determine if her bone marrow produced all healthy cells or if it produced more cancer cells.  If there is still no sign of cancer, a new intense chemo regimen in preparation for a bone marrow transplant will be started.  If her body makes more cancer cells, they now have an idea of what chemo works.  In that case she would go through more rounds of chemo until she is in remission.  Remission is when there are no cancer cells in the presence of a normal amount of white blood cells.

How does Ashtyn feel knowing that currently she has no evident cancer?  The one word she used was “relieved.”  She is relieved, rejuvenated, and happy.  She is no longer climbing the walls to get out of the hospital.  Knowing that she is “kicking cancer’s butt” and that “in a few weeks I get to go home for longer than just a couple of days” makes her content.

Ashtyn is feeling the best she’s felt in two months.  With the steroids she has to take, her appetite is good and she is enjoying food.  Other than the IV antibiotics she has to take during the day, she is not hooked up to an IV pole.  Freedom!  She is steady on her feet and can walk around the room and to the restroom without me by her side.  Most of the day she is wide awake with very little napping.  She does have pain in her legs and stomach probably associated with past chemo drugs.  The pain is controlled easily with medicine.  Her hematocrit, the volume percentage of red blood cells, is very low which affects Ashtyn’s energy and endurance. She is in bed a lot and is constantly bored but it’s “better than being way sick.”

Kids at Easter in the Boardroom

We brought Easter to the hospital Sunday.  Jason and Chandler spent time with Ashtyn during the day.  I went to an hour of church and then home to cook breakfast.  We cooked Belgian waffles, Danish pancakes, fresh hash-browns, bacon, and a huge bowl of fruit.  Orange juice, lemonade, syrup, powdered sugar, and Nutella were packed up.  At 2 pm we headed to the hospital.  I received approval from the doctors to allow Ashtyn to leave her room and spend time with her family in the boardroom right outside the doors of the cancer unit.  Jason and Chandler hid plastic Easter eggs all over the boardroom and Easter baskets in the cupboards.  After the food was set out on the table and the eggs were in place, Ashtyn left her room and walked into the boardroom with the rest of the kids.  As the kids filled their bags with eggs, Ashtyn sat on a comfortable chair and watched.  She had just received a chemo drug four hours prior and didn’t have much energy.  She wasn’t feeling very well so watching the action was good enough for her. After two hours of eating and talking, Ashtyn was ready to go back to her room. Stimulation is very exhausting for her.

Looking back at the last two months, the good has outweighed the bad by far.  We have had moments of great joy.  Ashtyn and I never get sick of each other and have really enjoyed the time we get to spend together.  There have been times we’ve laughed and had fun conversations with staff.  Visitors bring positive energy that is fun to feel.  Acts of service have touched our hearts and lifted our burdens.  When the outside world can be full of stress, commotion, and intensity, her hospital room is consistently peaceful, calm, and relaxing.  There is such an amazing feeling in her room that is so enjoyable to bask in.

We are full of joy and gratitude that the recent chemotherapy has killed Ashtyn’s cancer cells.  Thank you for your continual support.  Thank you for the thoughts and prayers you have given.

“Everything starts from prayer.” –Mother Teresa.  I believe that to be true.  What a difference prayer has made for Ashtyn during this illness.

Mother Teresa was overheard whispering to one that was terminally ill, “you say a prayer in your religion, and I will say a prayer as I know it. Together we will say this prayer and it will be something beautiful for God.”

To Clarify

I knew nothing about cancer before Ashtyn’s diagnosis.  I mean nothing.  After two months I am no where near an expert on leukemia.  The only things I know are from what I’ve seen and learned from staff around me.  I don’t research or read books, web pages, articles, or literature of any kind about cancer.  I don’t want to. I choose not to. Ashtyn is unique and she will go through cancer how God intends, not how statistics have shown.  So I learn as I go.  With that said, I will inform you the best I can as to what makes Ashtyn unique and what she is facing.

There are two main types of leukemia in children, the common acute lymphoblastic leukemia (A.L.L.) and the more rare acute myeloid leukemia (A.M.L.).  It is well known that Ashtyn does not have A.L.L or A.M.L.  Her cancer cells are unique and their appearance has baffled oncologists across the world.  Her diagnosis is “undifferentiated leukemia.”

My very limited understanding of A.L.L is that the patient receives chemotherapy at home, as long as they don’t have a fever.  At the end of each month a bone marrow aspirate is done to determine if the individual has gone into remission (no signs or symptoms of leukemia).  Once in remission they are put on “maintenance” chemotherapy for a long time to prevent any remaining leukemia cells from growing.  There are more details in the middle relating to treatment, side effects, blood counts, etc, but that’s a summary.

My limited understanding of A.M.L treatment is the patient stays in the hospital for 10 days during intense chemo and 20 days recovering.  After 30 days the individual goes home for a few weeks preparing for another 30 days of treatment.  If remission occurs, four rounds are done and the patient is then cancer free.  If the A.M.L seems high risk then a bone marrow transplant is done once in remission, decreasing the likelihood of the cancer coming back.

Ashtyn’s first round of chemo in February was based on the chemo protocol for A.M.L..  After the A.M.L round, Ashtyn went home.  However four days later it was discovered that the chemotherapy used had not been effective on Ashtyn’s cancer.  They immediately had her come back to the hospital to start A.L.L treatment with a few intensifications.  Why was Ashtyn not allowed to go home during A.L.L treatment when typically patients are allowed to?  The doctors felt Ashtyn was at high risk of getting extremely sick quickly and would need to be in the hospital so staff could respond immediately.  That proved to be true on March 22nd.  After two weeks of A.L.L chemotherapy drugs, a bone marrow aspirate was done on Friday to determine how her cells responded.  The results come back today.  If the treatment seemed to kill many of her cancer cells, Ashtyn will stay in the hospital to continue the course for a few more weeks.  If the treatment did not work I asked the doctor if Ashtyn can go home for Easter before they start another round using new chemotherapy drugs on Monday.  The doctor was very hesitant about letting her go home.  The concern is not that she will get sick from being outside the hospital.  The fear is that she will suddenly get sick and need hospital staff to treat her immediately.  I understand completely.  However I also understand her emotional need to go home and get a break from the hospital.  Ashtyn will never be able to go home for a long period of time during her cancer course.  I need to take the rare opportunities that arise and get her home for a few days from time to time. The doctors recognized if she starts a new course Monday, it would be another month before there would be a window for her to go home.  The agreement was that if on Saturday morning it is determined that the A.L.L chemotherapy did not work,  Ashtyn could go home Saturday and return Monday morning.

Of course the prayer is that Ashtyn’s cells have responded to the chemo requiring her to stay in the hospital.  If the chemo did not work, we will be grateful for the chance she gets to go home and have full faith and hope that the next round will contain the chemotherapy drugs that her cells will respond to.  The ultimate goal is to discover what chemotherapy drugs work, get her into remission, and do a bone marrow transplant which will decrease the likelihood of the cancer coming back.  She must be in remission to increase the chances of a successful transplant.

Ashtyn with BYU

Ashtyn with Sunshine

Cancer is an awful disease.  However there is so much good surrounding cancer.  There is a spirit that is partnered with cancer that is unlike anything I have ever experienced.  The tender hearts and concern, the care and compassion, the thoughts and service, and the loving emotions attached to cancer is astonishing.  Last week Ashtyn opened a box donated by strangers in L.A. California who started “Ashtyn’s Army in LA” on Facebook   The box was full of items to bring sunshine to her day.  Yesterday she opened a box containing a bald American Girl Doll and accessories donated by a group of more loving strangers.  Today a girl from her youth group brought up a basket full of BYU items donated by both neighbors and strangers.  In addition to strangers pulling together, friends from years past have shown incredible care and generosity.

Ashtyn with Landon Cooper

More proof of the good surrounding cancer:  Ashtyn got a visit today in the hospital from Landon Cooper and two men from his team. Landon founded miles2give.org.  He is running 3,000 miles, through a 150-day endurance feat, that will raise over $100,000 for Sarcoma Cancer research.  He started in Ocean Beach, California on February 14th and is running across the country to Washington DC by July 4th.  The moment they walked into Ashtyn’s room hugs were exchanged as if we were close friends.  We had never met, however we share the bond of cancer.  They interacted with Ashtyn as if they knew and loved her as family.  The positive spirit brought by these men was quite uplifting.  They have dedicated their lives to raising money for cancer research, inspiring others, and uplifting those who are affected.  As they left Landon said, “She is the hero.”

The Ministry of Angels

Ashtyn has been back in her room from the pediatric ICU for 36 hours.  She looks good.  She feels good.  From now on I will constantly be on high alert with her.  My eyes are more wide open for when her body does something out of the ordinary.  My heart is more open to when I feel things aren’t quite right.  Since leaving the ICU, her heart rate is lower than it was before.  A week ago her heart rate was 70 to 100 beats per minute when awake and 60 when asleep.  Now when she is awake her heart rate is 60 and 45 to 50 when she is sleeping.  There really is no explanation to why her heart rate is lower and no one seems that concerned.  However, I am now uneasy about anything that may seem abnormal.  Sunday night I couldn’t go to sleep until they did something, so she had an EKG which showed her rhythm is normal.  In the morning I will ask if a heart ultrasound can be done just to make sure her heart is pumping blood properly.  If her heart looks normal then I will rest assured that her low heart rate is fine.  Other than that, Ashtyn has been doing well.

In the past two months Ashtyn has had moments when her health is stable and other moments when she has been extremely sick.  I have always felt that mortal and heavenly angels are intertwined on this earth going about doing good.  Ashtyn and I have felt help from both sides working to build us up.  It seems when she is stable, Ashtyn’s Army and her earthly angels care for her with prayers, messages, visits, food, gifts, and love in many forms.  When she has been extremely sick and there’s nothing we can do for her except pray, I have felt heavenly angels take over.

Moroni 7:29-30 says, “my beloved brethren, have miracles ceased?  Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men. For behold, they are subject unto him, to minister according to the word of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness.”

On February 17th, during a time when Ashtyn was extremely sick, I published a post called “On the Bright Side.”  I wrote, “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.’”

Elder Holland said, “from the beginning down through the dispensations, God has used angels as His emissaries in conveying love and concern for His children.  Usually such beings are not seen. Sometimes they are. But seen or unseen they are always near. Sometimes their assignments are very grand and have significance for the whole world. Sometimes the messages are more private. Occasionally the angelic purpose is to warn. But most often it is to comfort, to provide some form of merciful attention, and guidance in difficult times.”

In my last post I mentioned when Ashtyn was “coding” and gained consciousness, the first thing she did was looked to the empty corner and said, “Grandma!”  In the post I didn’t expound because Ashtyn said nothing else about it and there wasn’t anything else I needed to say.  The next day, Saturday, I asked Ashtyn if she remembered calling out Grandma’s name.  She didn’t remember anything about it.

By Saturday night Ashtyn was stable and feeling fine in the PICU.  She was completely awake and alert.  The only medications being given were antibiotics.  She hadn’t had narcotics for weeks and was off anti-nausea medications as well.  The plan was to keep her overnight in the PICU and send her to the floor in the morning.

At 5 am Sunday morning, Ashtyn woke me up so I could help her to the restroom.  She was hooked up to monitors.  The easiest thing for her to do was use a bedside toilet.  Afterwards she got back in bed and laid down as I quickly used the restroom in her room.  I was gone for maybe 30 seconds.  When I opened the bathroom door to come out Ashtyn exclaimed with an intense voice, “Mom! I just saw Grandma!”  I tried to act cool and calm though for some reason the idea of seeing angels has always scared me.  I sat on the bed next to her as she explained what happened.  “I was looking around the room waiting for you to get out of the bathroom and I just saw her over there to the left of the computer.  She was beautiful and glowed.  She was wearing a white dress with ruffles at the top.  She was healthier and happier.  Mom, it was so clear.  She smiled and waved to me.  I smiled back.  It was a nervous smile because I was shocked to see her.  And then she faded.  I think she is really busy but wanted to let me know she is watching out for me.  I am really happy I got to see her.”

Elder Holland said, “He (God) watched over His mortal family constantly, heard their prayers always, and sent prophets (and later apostles) to teach, counsel, and guide them.  But in times of special need, He sent angels, divine messengers, to bless His children, reassure them that heaven was always very close and that His help was always very near.  I testify that angels are still sent to help us, even as they were sent to help Adam and Eve, to help the prophets, and indeed to help the Savior of the world Himself.”

Second Trip to the ICU

On March 15th, Ashtyn was devastated to go back to the hospital after only being home for four days. “Why do I have to be here? Why can’t I do the chemo at home? I feel fine!” Every day Ashtyn asked when she could go home. I explained, “You need to be in the hospital in case you react poorly to chemo, get sick, or something happens. I will fight for you to go home when it is the right time but it is not the right time.” For the past three days, Ashtyn stopped begging to go home.

In my last post I mentioned, “I know each day can change in an instant” and it did. Friday morning she woke up and immediately texted her uncle Jared asking him if he would bring her Indian food, strawberry shortcake, and eat dinner with her. She then ate breakfast, watched TV, did physical therapy, and rested in bed. Her body is generally weak and able to do only a minimal amount of activity before she wants to collapse. The “easy” task of raising her arms above her head or doing 20 squats is actually extremely painful and quite difficult. She was eating, her vital signs were stable, and she seemed comfortable so to me she was doing pretty well. At 5 pm it was time for her bath and central line dressing change. She had just finished physical therapy, “just give me 10 minutes to rest.” However she never woke up or felt well enough that I was comfortable forcing a bath or dressing change. She was exhausted and extremely nauseated. The nurse gave her IV medication every 2 hours to try and help with her upset stomach. What had always helped her nausea in the past was not helping at all. Why was she so sick to her stomach? Her vital signs were stable though I didn’t like the vibe she was giving me. I talked to her nurse about how Ashtyn has become a girl whose health can change suddenly. I explained, “when friends or family members ask to come visit her in the hospital I always tell them to please text me an hour or two before coming because I never know how Ashtyn will be feeling or behaving.”

At 7 pm Jared and Nanette brought her the Indian food and strawberry shortcake she had been looking forward to but she was not interested in food at all. For days she had been constantly hungry while taking the medication dexamethasone, but now had no desire for food. She hardly socialized with her visitors and continued sleeping.

Getting her stable enough to leave for PICU

Heading into the PICU

At midnight Ashtyn woke up, “Mom, I don’t feel well at all.” I immediately got in bed with her and noticed right away that she was feverish. Her temperature was 102.5 with a red, flushed face. The nurse took her blood pressure and was unable to get the bottom (diastolic) pressure…it was too low. As she left the room to call the doctor, Ashtyn needed to go to the restroom. I walked her to the restroom. On the way back to her bed she stopped walking and felt strange in my arms. “I need help” I said. She continued walking a few more steps and collapsed in my arms. The charge nurse opened the door and with one look at Ashtyn he called out, “Code.” “Yes! Call a code.” I responded. As I was trying to get my noodley daughter in bed I heard over the loud intercom, “Code Blue 4403. Code Blue 4403.” Simultaneously, Ashtyn woke up, I laid her in bed, staff members poured into the room, and she called out to the empty corner, “Grandma!” I held her hand with my face close to hers while vital signs were being done, blood was drawn, and IV fluid poured into her central line. A doctor asked her questions, “What is your name? Do you know where you are? How old are you?” She knew the answer to the questions. “Mom, are you nervous?” This was the same question she asked me on February 17th when we were going through the same thing. “No Ashtyn. I am not nervous. You are going to be fine.” And the honest truth was, I wasn’t scared. With the code team there, I had complete comfort knowing she was in great hands. They were doing everything that was needed to help Ashtyn. I was so grateful they were all at her bedside. I was so grateful I was at the hospital. I was grateful she went to the restroom at the time she did and passed out, giving us a clear sign that she needed immediate intervention to help increase her blood pressure and blood flow to her brain. I was grateful she was going to be monitored in the Pediatric ICU until she was stable.

Holding Ashtyn's forehead while she wasn't
feeling well in the PICU

Her bed was soon pushed through the halls, into the elevator, down to the 2nd floor, and into the PICU. Once in her room, more fluids were given to try and increase her blood pressure. It was soon apparent that norepinephrine was going to be needed to maintain a decent blood pressure. Her initial blood pressure during her “code” was 63/15. A normal blood pressure for her is around 100/55. Norepinephrine causes vasoconstriction, narrowing the blood vessels and increasing blood pressure. Antibiotics and norepinephrine were started. Ashtyn laid in bed completely alert and completely brave. The most unpleasant thing for her was throwing up every 20 minutes for about an hour, “I hate this.”

By 4 am everything had settled down and it was time to sleep. I slept on a chair that reclined flat. Ashtyn slept in her hospital bed with fluids running though her right hand peripheral IV, and medications and fluids running in her broviac central line. She had a blood pressure cuff on her left arm taking her blood pressure every 10 minutes. Her oxygen saturation monitor was wrapped around her right thumb and three EKG leads were attached to her chest. There was one nurse watching over her monitors at all times and numerous doctors and staff at our disposal if needed. I fell asleep without any worries.

Saturday was spent in the ICU weaning her off norepinephrine. By 8 pm she no longer needed medication to keep her blood pressure normal. Her biggest worry? When were they going to let her eat? She was starving all day. By 8:30 pm they finally allowed her to eat.

Watching TV Saturday

Is she sick with a bacterial infection or did she have a reaction to a chemotherapy drug given 10 hours prior? It is yet to be decided. Tonight we talked about the ICU experience. I asked her, “why did you ask me if I was scared?” Her answer, “Because if you are scared, I’m scared. The only thing that was scary was when they started the IV. I felt God was near the entire time. Throwing up sucked though, but He was still there. I just want to go home for Easter. It is my favorite holiday. Even if I can only go home for one day, I will be grateful for what I can get.”

“Each of us will face trials and tests. It is how we react to those difficulties that will determine our success and happiness… I realize that it is much easier to look back when a trial is over and see what we have learned from our experience, but the challenge is to gain that eternal perspective while we are going through our tests.” Elder James B. Martino

Coping

On February 1st, two days after Ashtyn was hospitalized, I received a message from Brady, whose daughter Millie was on the same floor.

“Suzanne,
I’m very sorry to hear about Ashtyn. While I’m no expert, we’ve been dealing with this now for over three years, so I can give some advice on how to deal with it as a parent.

Millie was only four when she was diagnosed, so she was much younger than your daughter, but I still believe this holds true. Our children don’t fully understand what they’re facing. They gauge how bad the situation is by how we react. If we cry all day and are depressed, they will be frightened. If we are calm, confident, and tackle this task like it’s normal, they will feel the same way.

That’s not to say that I’m never sad – Millie and I have cried together many times. However, we are happy nearly all of the time. On a particularly tough day a few weeks ago, Millie and I talked about it, and she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best. We’ve gone to Disney World with Make-A-Wish, met Justin Bieber, Swoop (the mascot from the U) visits her all the time, and thousands of people have sent her mail/emails. I can’t tell you how many wonderful things have been done for us by friends, family, neighbors, and total strangers.

When I told Millie about your daughter she said ‘Dad, I really wish she didn’t get cancer. Please tell her that even though it’s really bad, a lot of good things happen, so she shouldn’t be too sad.’ Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

At the time I got this message I was being bombarded with information. I was completely sensory overloaded and wasn’t able to take to heart what he wrote. Now that I look back at his message I understand with clarity how he felt. I could now write the same letter to someone else with complete honesty and say the exact same things. Children feel and react how their parent’s feel and react. I have observed this with my own children from the time they were born. It continues to be true when dealing with Ashtyn. From the beginning, in my mind, we were not going to shrink while facing cancer. We were not going to lose ourselves. We were not going to soak in sorrow or throw a pity party. No way! I knew Ashtyn was capable. I knew God was fully aware and had a plan for her. As Elder Bednar put it, “Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer. And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.” We were to be strong, confident, and optimistic. Faith and a positive attitude has been empowering.

Today when I read, “she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best,” I knew Brady was being sincere. In the short time Ashtyn has had cancer, it has been the worst thing that has ever happened to our family, however it has also brought the greatest blessings. We have experienced wonderful things done by friends, family, neighbors, and total strangers. We have experienced feelings of the Spirit, angels, and God being very near. Ashtyn has already experienced what Millie has observed in her own life. “Please tell her that even though it’s really bad, a lot of good things happen.”

It is difficult for some to understand how Ashtyn and I can find joy in this experience. Others have been shocked that we don’t feel anger. There are those that wonder why we aren’t being more “real” with feeling sorrow and doubt. The reality is, our hearts are full of peace and comfort. Our positive vision for the future fills our minds. Our knowledge of God’s presence in our lives fills our souls.

The last several days have gone by pretty smoothly for Ashtyn. Her days have been spent eating, sleeping, watching TV, doing physical therapy, and talking to staff and visitors. Physically she has felt well though her body is weak and tires easily. Emotionally she is doing well though she wants to go home and is not even able to leave her room. I know each day can change in an instant. Today she woke up at 9:30 am, the earliest since being in the hospital. She was awake and alert all day feeling good. By 9 pm she started to not feel well. She was nauseated and felt bloated. She informed me, “I just don’t feel right. I am going to rest for a bit.” With that said, she put on the “LDS Hymns” station on Pandora and closed her eyes. As I watched her I sensed how crummy she felt. I was so proud of her ability to cope without complaining as she focused on the words of the music. With her eyes closed, her lips moved along to the words of the song, “Jesus Once of Humble Birth.” Her fingers played along to the piano of “Kiss the Rain” by Yiruma.

The words of Brady ring true and bring a tremendous amount of joy and gratitude. “Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”