Where Can I Turn For Peace?

Have I given you the impression that I’m always calm? If I have, it’s not true. I do freak out. It doesn’t last long but it does happen. Things have scared me much more lately than they did at the beginning.

Wednesday I took Ashtyn to lunch at Blue Lemon with a friend and her cousin McKenzie. When we were ready to leave, Ashtyn and McKenzie walked to the fountain machine for refills. As Ashtyn lifted her cup to refill it, her vision became blurry. She lost all strength and dropped her cup spilling the ice on the floor. She then leaned on McKenzie for support because her legs were too weak to stand alone. I rushed to Ashtyn and automatically wrapped my arms around her back preparing for her to fall. Her legs trembled and jerked for several seconds. Gradually she regained strength and was fine. Was I inwardly freaking out? You bet. I’ve been with her before when her blood pressure drops. She has gone to the ICU three times because of blood pressure problems. There is nothing that makes me more nervous than abnormal blood pressures. Once she felt normal again and I could relax, I noticed my hands were shaking and I was freezing cold. Apparently that’s how my body responds to intense sudden fear. When I got home I checked her blood pressure. It was normal. I called the hospital and informed them of what happened. They advised that I keep an eye on her. Their concern was minimal because her blood pressure was back to normal. I was then calm.

Unexpected Clinic Visit
Unexpected Clinic Visit

Thursday morning when I got up to go to the gym, Ashtyn surprisingly woke up. She asked me if her central line looked ok. It didn’t. There was a build up of pus around the insertion site. I called the hospital oncology clinic and was told a nurse would call me back. I had a pit of worry in my stomach. I have seen Ashtyn get sick enough to know that it’s not a path I enjoy going down. I quickly dressed, did my hair, and got ready for the day. After 30 minutes of not hearing from a nurse, I called the clinic back informing them that I was bringing Ashtyn in. “You can’t just walk in. Let me get a nurse on the line. Hold please.” I explained to the nurse the pus and appearance of the incision site. She put me on hold so she could talk with a doctor. It didn’t take long before she was back on the phone, “The doctor would like you to come in. Would an hour be too soon for you to get here?” Pleased with their decision I said, “I can leave right now. I will be there in 20 minutes.” I was anxious to get her to the hospital to start treating the infection. Once there, they changed her central line dressing, cleaned the site, and took a good look at it. They also cultured the site and did blood cultures to see if the infection had gotten into the blood stream. A complete blood count test was also done that showed, after a week of chemo, her white blood cell and red blood cell counts were dropping. Ashtyn was already scheduled to go to clinic the next day so the doctor ordered two units of blood to be given Friday. She was given an IV dose of antibiotics and I filled an antibiotic prescription for home. After 3 ½ hours, we headed home.

Second Blood Transfusion
Second Blood Transfusion

Friday morning we drove back to the hospital. The visit started with another painful dressing change. She has a constant open wound on her chest where the central line goes in. With each dressing change, her central line site is scrubbed with alcohol and ChloraPrep antiseptic. During the process tears streamed from her face as she cried. She later explained how it feels. “It stings, burns, and has an awful, sharp pain.” After the dressing change, the chemo drug Ara-C was given and the first unit of blood was started. As the blood transfusion was being infused, Ashtyn and I sat side by side watching “Cloudy with a chance of meatballs.” After about 15 minutes, her arm started to itch and was red in a couple of areas. She thought she’d been bitten by a bug. I asked the nurse if Ashtyn was having a reaction to the blood. After looking at the rash, the answer was yes and the blood was immediately stopped. Her blood pressure was also quite a bit lower than when we first had arrived. I got nervous. Ashtyn and I asked if they would check her blood pressure every 5 minutes instead of every 15 minutes. She was given a dose of IV Benadryl and felt “weird” and dizzy. That made my heart beat even faster because I didn’t know if she felt different from the blood reaction, possible blood pressure problems, or from the Benadryl. The blood transfusion was restarted. Soon she complained that her throat was feeling tight. I immediately jumped up and stopped the transfusion. The doctors came and assessed her for the third time and decided to stop that blood transfusion completely. I felt uneasy and sent out a facebook post. “Please pray that the 2nd unit of blood will go in without a problem, that her central line infection will go away, and that her lumbar puncture will go smoothly.”

Ashtyn was then sent to the Rapid Treatment Unit operating room where she was put to sleep for a lumbar puncture to inject chemo into her spinal fluid. I felt calm. We then went back to the clinic and a second blood transfusion was started. Everything went well and after seven hours in the hospital, we went home. I was so proud of Ashtyn for her bravery and strength. Erik, a close friend from years ago commented on my facebook, “Rough day…Keep going. You can do it! You too Suz…Keep going. Everyone is rooting for you and willing to help when you need it.” I was grateful for that comment. I really needed those encouraging words. I need to stay strong and keep going for Ashtyn.

Saturday I again noticed that I wasn’t as calm as I had been in previous months. Where was my peace? I knew I needed to go to the temple. Ashtyn’s home health nurse was visiting in an hour to do a dressing change because pus was still coming out of her central line. Ashtyn asked if I could stay and be there for the dressing change. I explained that I really needed to go to the temple but her dad was there to help her through it. I went to the L.D.S Jordan River Temple. Once in the temple, I walked into the chapel and immediately saw my bishop I had a year ago. He is a man I greatly admire for his inspiration, faith, humility, charity, and daily commitment to be an instrument in God’s hands. He and I have had wonderful talks in the past. He has followed Ashtyn’s progress and has visited us at the hospital a couple times. I approached him and the love in his eyes was clear. We only sat and talked for a few minutes. He asked how Ashtyn was. I explained that she was doing good however after three months, I now felt fear. He had a Book of Mormon in his hands with the pages opened. He immediately handed it to me and told me to read what apparently he had just been reading. With tears in my eyes I began to read. This is what I read, likening it unto me: “Never had I seen so great courage. They said unto me: Our God is with us, and he will not suffer that we should fall. Now they never had fought, yet they did not fear death; and they did think more upon the liberty of their fathers than they did upon their lives. They did not doubt, God would deliver them.” Alma 56:45-47.

After reading the verses, Bishop Oswald and I went our separate ways, however I thought about our interaction for the next several hours. I had told him I was in the temple on a Saturday afternoon wanting to feel comfort, peace,and strength. He mentioned he went to the temple because God is his companion, he needs that connection. The tender mercy of having a man I thoroughly look up to, who knows me well, in the temple with his scriptures open to a verse for me was a reminder that God is aware of me and my needs. My courage was restored. The verses reminded me to not doubt. I was also reminded that the greatest strength comes when God is my companion.

When I left the temple I checked my phone and listened to a voicemail from the hospital. The home health nurse talked to the oncologist at the hospital about Ashtyn’s central line infection. The message was for me to bring Ashtyn to the ER so they could start a strong IV antibiotic. They suggested I pack an overnight bag in case she needed to be admitted. I rushed home, quickly packed up a couple small suitcases, and was off to the hospital. I felt complete comfort, peace, and strength. I was able to be what Ashtyn needed me to be.

We got to the ER at 6:30 p.m. After sitting in the ER for six hours, Ashtyn was admitted to a room on the oncology floor. It is now 2 a.m. Ashtyn is sleeping, but it won’t be for long. Her nurse will soon be coming in to do another painful dressing change so the pus can be cultured. Antibiotics will then be started. Before falling asleep Ashtyn said, “You don’t realize what you have until you don’t have it anymore. I wish I would have enjoyed the time more when I didn’t have to worry about a central line infection.” My dear friend Janet commented about our recent situation, “The adventure never ends.” Isn’t that the truth? We are learning so much. “All these things shall give thee experience, and shall be for thy good.” D&C 122:7

Ashtyn Unhealthy Central Line
Ashtyn Unhealthy Central Line

12 responses to “Where Can I Turn For Peace?”

  1. Poor Ashtyn! She has had sooooo many dressing changes! This is for Ashtyn. I hope you get better and that wobble at blue lemon scared me too! I hope the transplant will be done soon so that your hair can start to grow back but honestly you are beautiful bald!

  2. I think that the more you know about things that can go wrong, the more you have to worry about. You have learned so much over the past few months, physically AND spiritually. You are one tough cookie Suzanne, and I am constantly amazed at your strength, even when you think you are not. You have so many prayers in your behalf–not only for Ashtyn and your family, but for YOU!

  3. I am so sorry that you are going though such a hard thing right now! Please know that I love you and that you are such an inspiration to me!! Please hang in there and keep The Lord in your heart!!!! Love you!!!! Hang in here!!!!

  4. Dear Suzanne,
    I have cried my way through your post today! I remember those feeling so well. My son has no memory of all he went through, but mine has remained vivid. My heart, thoughts and prayers go out to you. I am so glad you went to the temple and felt that peace. I was blessed with peace so many times throughout our experience, but when things happened it was SO hard to keep the doubts and fears at bay. I beg you to take care of yourself. It is so easy to focus on your sick child and to forget your own needs. My son has been recovered for a long time now but I am struggling with the results of the stress. This week we are going to be celebrating his 10 year reunion with the doctors and staff at city of hope. I know we have never met but you and Ashtyn are in my prayers daily. With love and lots of positive thoughts coming your way. Susan francis

  5. Each and every day our family keeps Ashtyn, you and your entire family in our prayers! We love you so much. My heart is filled for you and we want you to know how special and incredible Ashtyn is!

  6. After reading this, I too cried, but not for sadness, but for the fact that one, young, valiant, girl is the impetus for so many people praying, feeling love and standing together in unity! Ashtyn, you are that impetus, and such an incredibly, strong young girl that so many of us admire!!!! When you get a little tired and frustrated, just remember that so many love and look ” up to you””! Keep a positive attitude young lady and know YOU ARE A DAUGHTER OF GOD! Now, that speaks volumes!!!”

  7. I’m sooo sorry! It wouldn’t go through to the server so I thought I needed to write another one! Sorry for wasting space! I’m also sorry for not being at school today! I truly wanted to see you but I was sick! I didn’t even know you came till Ellyson told me! I’m greatful I didn’t go though, because that would have indangered you while I was sick! I hope I’ll see you at the play that we’re doing though! (Ellyson told me that too!) You are in my thoughts and prayers still! Can’t wait to see you!

  8. Brave brave women!!! That scared me a little but hopefully it is getting better. Praying for you guys. So happy I saw you guys leaving the school when I peeked out my little window at the classroom door!!!! Suzanne you are a great mother 🙂

  9. Dear Ashtyn,Suzanne & family. Can’t express how helpless we feel as you both are going
    through this trial, but like you, we put our faith in God and know that He will bring you through these dark valleys into the sunshine again. We are attending daily Mass and asking
    everyone to pray for Ashtyn and all the family. God Bless & Love to all