Tag: radiation

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Friends

Yesterday afternoon I went back to Sinai Hospital to deliver more bears for Ari’s Bears. This time was so much harder than the first time I went back. This time I couldn’t tell her story to the parents without breaking down. This time I had Ariella’s friends with me, mostly school friends, and her absence was obvious. There was no one playing basketball or challenging me to Foosball. It was so quiet in there for having seven preteen girls and one preteen boy. That room was never quiet when Ariella was in there.

I love Ariella’s friends. They welcomed her into a new school with open arms and treated her like a normal kid. They were supportive of her and it was evident how much they liked her. She was the new kid and yet never felt like one. I am forever grateful to her friends for being so kind and loving and welcoming. She truly loved her school and went even when she wasn’t feeling her best. I am also so pleased that her friends are also passionate about Ari’s Bears. They too want to continue her legacy.

But being with her friends at the hospital was so very hard (any of her friends reading this, you guys were incredible and you will always be part of our lives and part of Ari’s Bears, it’s just hard for me to do it without her). Watching them interact, hearing their conversation, and just knowing a member of their crew was missing. Ariella loved being with her friends. She thrived on the interaction. I miss all of it so much. I miss hearing about her friends, having her friends sleepover, watching her become more independent, watching her come into her own. I have a lifetime of seeing girls her age grow up, surpass her, do all the things she will never get to do and that I will no longer get to do with her. As parents we take such joy in our kids. We take pleasure in watching them grow, making their way in the world. We live through them. Our jobs are to raise them into successful, independent adults. Watching the other kids do it just isn’t good enough. Watching other kids do it is so fucking hard. I want her back. I want my baby back. I don’t want to navigate this world without her. I need her to nurture, to love, to take care of.

This morning I was at an appointment with someone at a radiation oncology office. Figured it would be fine, I was just hanging in the waiting room. But while waiting I heard two patients ring the end of treatment bell. The sounds of celebration filled the waiting room. Ariella rang the end of treatment bell twice. First after she finished her first line treatment and second after she finished radiation as part of her relapse treatment. I was so happy when she finished that radiation treatment. For one thing, she was feeling pretty lousy from the radiation so I was hopeful that she would start feeling better soon. But mostly was thrilled to be finished with that phase of treatment and hopefully move onto the next, the bone marrow transplant. Radiation worked. Her tumors were dead. Nothing lit up on the PET scan. It was time to kill those cancer cells for good with new bone marrow. So much hope. Hearing the bells brought me back to those two times when we had hope, a positive outlook. We thought things would be okay. Only to have our hearts ripped out of our chests with nothing left to live for.

I don’t want to do this anymore. I don’t want to cry everyday, I don’t want to live with a gaping hole in my chest, I don’t want to watch or hear about the other kids getting to do all the things Ariella will not. I can’t go anywhere without the threat of a trigger. There is always a reminder, something that makes me think of her. In reality I am always thinking about Ariella. I am always aware of her absence. But some things just slap me in the face. Make it painfully obvious that she’s not there. Makes me miss her even more if that’s possible.

I think my friendships are ultimately going to suffer. Especially friendships made because of Ariella. Not because of them, but because of me. It’s too painful and I fear I may have to distance myself. But then I won’t have anyone outside of family. I don’t know how to do this life. This life is unrecognizable. I am unrecognizable. I am not sure how to go on from here.

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Fight or Flight

Nausea. Pit in my stomach. Heart in my throat. Shaking. Heart palpitations. Headache. Adrenaline pumping. Edge of my seat. Sweating. Muscles tighten. This is what happens when the body is in a fight or flight state. A state I am in much of the time. Constantly on alert. Danger is all around me. It’s impossible to calm this reaction when anything can trigger that grief wave to come crashing over me. Danger is lurking in every corner, in every possible interaction, in any song that may come on the radio, in any book. Nothing is safe. Imagine being in this state. Now imagine being in this state more often than not. Sounds exhausting, right? It is. It is draining, debilitating. It’s why I would rather stay home. Home is safer. I have control at home. I have no control anywhere else.

Now imagine feeling like this but then being in a situation that heightens your response even more. It’s horrendous. Today I was with someone when he met with a radiation oncologist to discuss treatment options. I have taken him to several appointments but previous appointments did not trigger me as I pretty much stayed in the waiting room. But this one. This one brought me back. Brought me back to the radiation planning and radiation appointments with Ariella. I felt like I was physically back there, discussing my daughter, with all the hopes and fears that went along with it. Though the situations are very different, this appointment was not so different. We discussed the preparation leading up to radiation and what the schedule would look like. Just like we did at Ariella’s consult. Ariella’s radiation appointments weren’t so bad. She did have some nasty side effects but she managed to have fun at her appointments. She liked the techs and she was always her goofy self when changing and wearing her gown. She laughed quite a bit and made me laugh too during those appointments. I wish. I wish that’s where I was today. Discussing Ariella’s radiation plan. Because we knew Ewing’s responds extremely well to radiation. We just knew radiation was going to kill those tumors. We were so hopeful and knew that with the radiation we were likely nearing the end of the next phase of treatment. And radiation worked. Scans following radiation showed no evidence of active disease. All I could think about at this appointment was how happy Ariella was even during her radiation. How she could make any situation fun, how lively and exuberant she was, how hopeful she was. That she was alive with no idea what was coming. It was everything I could do to keep from screaming, to keep from running out of the room, to keep from crying loud, ugly tears. I couldn’t wait to get out of there.

I’m sure others may think I’m crazy for doing this again. Going to oncologist appointments, reliving my nightmare. But I can’t avoid it. Not in this situation. And I’m generally glad to do it. I know I serve as a comfort to this person and he repeatedly assures me that if it’s too much I can stop anytime. But life doesn’t work that way. It’s unfair that cancer has touched us again so soon but we do what we have to for the people that need us. And helping him gives me a sense of purpose and meaning which I have pretty much otherwise lost. Today’s appointment just happened to be especially hard.

Surprisingly to me I have not lost my survival instinct. As I’ve mentioned before I no longer fear death and in fact I would welcome death with open arms. I frequently think that if I was in a situation that could become dangerous I would not try to avoid it. But today I had to slam on my breaks to avoid hitting a deer. Maybe it was because I had someone in the car with me. Maybe it’s because while I’m not afraid of dying I am afraid of being in pain. Maybe it was just a reflex. I know this is a very uncomfortable subject but it is a truth among bereaved parents. I have heard from many, many parents who have all said they want to die. Most have said they would not commit suicide but I would say a good number have a death wish. Though some have said that they take comfort in knowing suicide is always an option “tomorrow”. That’s how they get through each day. There are articles and books discussing this taboo subject. It can’t be ignored. Many bereaved parents, myself included, feel like life is no longer worth living. And the pain we have to endure for another lifetime. Why should we go on living a life full of anguish and torment when we have no reason to live anymore? Telling me I’m loved and important to others does not make a difference. Because feeling unloved has nothing to do with my reasons for wanting to leave this world. I know I’m loved and I know others would be in pain if I died. But to me now everything is meaningless. I don’t want to live without my daughter. I don’t want to live with this never ending heartache, despair, and longing. Now matter how loved and supported I am my reason for being is gone and the pain will never go away. That is why I am not afraid to die. That is why I wish my life would end.

I promised myself that I would blog my truth. I keep to myself a good bit, I’m not good at small talk, and I generally do not feel comfortable talking about how I’m feeling, especially when reaching into the darkest parts of my soul. But I need for others to know how I’m feeling, to know I’m not okay, and that includes sharing the ugliest of truths. And I also hope by sharing my darkest of thoughts other parents in similar situations will take comfort in realizing they are not alone.

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Sarcoma Awareness Month/Ariella’s Story

July is sarcoma awareness month. In honor of that I am going to share some facts and share Ariella’s story for those who have only gotten to know her in the past several months.

From the Sarcoma Alliance:
What is Sarcoma?
Cancerous (malignant) tumors of the connective tissues are called “sarcomas”. The term sarcoma comes from a Greek word meaning fleshy growth. Sarcoma arises in the connective tissue of the body. Normal connective tissue include, fat, blood vessels, nerves, bones, muscles, deep skin tissues, and cartilage. Sarcomas are divided into two main groups, bone sarcomas and soft tissue sarcomas. They are further sub-classified based on the type of presumed cell of origin found in the tumor. They all share certain microscopic characteristics and have similar symptoms. Sarcomas can develop in children and adults. For children under 20 approximately 15 percent of cancer diagnosis are sarcomas. Although rare, there are approximately 15,000 new cases of sarcoma diagnosed each year in the United States.
In general sarcomas are divided into the large groups:
soft tissue sarcomas, and
bone sarcomas.

Ariella had Ewing’s Sarcoma
(from Stanford Health Care website)
What causes Ewing sarcoma?
The majority of Ewing’s sarcomas result from a chromosome rearrangement between chromosomes #11 and #22. This rearrangement changes the position and function of genes, causing a fusion of genes referred to as a fusion transcript. Over 90% of individuals have an abnormal fusion transcript, involving two genes known as EWS and FLI1. This important discovery has led to improvements in diagnosing Ewing’s sarcoma.
Similar to osteogenic sarcoma, trauma or injury is sometimes involved with the site at the time of diagnosis. However, this trauma is thought to bring the condition to attention rather than to have any causal relationship.
Some doctors classify Ewing’s sarcoma as a primitive neuroectodermal tumor (PNET). This means the tumor may have started in fetal, or embryonic, tissue that has developed into nerve tissue.

Ariella began complaining of pain in her right leg in September 2016. However this was following an injury, she had accidentally gotten hit by a chair in school. Ariella was a dancer and she pretty much only complained of the leg pain at that time after she had been dancing. We did have it x-rayed which didn’t show anything and we were advised to have her rest the leg for an extended period of time so it could heal. Since the pain did get better with rest we just figured it was injured further with dancing and didn’t think anything of it. At the same time, Ariella had lost an alarming amount of weight which we were working with her pediatrician to figure out. As part of diagnosing the cause of the weight loss blood work was done. Blood work came back normal. Sarcomas cannot be detected in the blood. We did not at all connect the leg pain to her weight loss. Her pediatrician was unaware of her leg pain since it came and went, not sure if he would have made the connection or not. Rest seemed to help so she continued dancing but by the end of January the pain was constant, not just when she used her leg. It was also red and swollen. She saw an orthopedist who was concerned with what he saw on the x-ray and sent us next door to his office for an MRI. Not 20 minutes after the MRI I received a phone call that she had a tumor, it looks malignant, and a referral to the orthopedic oncologist. We saw the oncologist the next day, January 27, 2017 and had more tests and scans. She went in for a biopsy Monday January 30, 2017.

I actually don’t remember the exact day we had the official confirmation of cancer but it took several weeks after that to determine that it was Ewing’s Sarcoma. Here we are, anxious and wanting to start treatment immediately but had to wait for the type of cancer because all cancers are treated differently. February 27, 2017 we got confirmation. Luckily the cancer was localized to her right tibia. We then had to meet with the pediatric oncologist who would detail the treatment plan.

Ariella began her treatment in March, 2017. It started with placing a Hickman Catheter, which ended up causing a pneumothorax requiring a chest tube. This delayed treatment further as it took a good 5 days at least for the pneumo to heal and the chest tube to be removed. Then finally, treatment started.

Ariella endured 17 rounds of chemo which required her to be inpatient every other week in the hospital for at least 2 or 5 nights. She pretty much had every side effect you could have; hair loss, nausea, fatigue, neuropathy, etc. She had fevers several times requiring ER visits and an infection that required her Hickman to be removed and replaced, causing another pneumo requiring another chest tube. However when she was not in the hospital you would never know she was sick. She continued going to the dance studio (even though she couldn’t dance), spending time with friends, and having sleepovers.

After the 6th round of chemo the chemo was paused so Ariella could have her limb salvage surgery to remove the tumor. Rather than using an implant the doctors decided to place an external fixator to allow Ariella to regrow her own bone.

Ariella had the fixator for 51 weeks but eventually learned to walk without crutches and even dance in her recital.

Ariella rang the end of treatment bell December 28, 2017. She had her Hickman removed January 2, 2018 and returned to school that same week. The kid was amazing. She jumped back into her life like nothing happened. We were relieved when her first set of routine scans came back clear and devastated when the second set of scans June 1, 2018 did not. This time the cancer came back in her lungs, acetabulum, and sacrum. Ariella did have her fixator removed the following week.

This time Ariella had a port placed instead of a Hickman, which allowed her to have a decent summer. Treatment was outpatient and we were still able to go on our planned trips to Disney World, LA, and Ocean City. Ariella even went to school when on this chemo. She went through 2 different chemo regimens which were not working and finally went on an oral pill. She also had radiation to all the various spots. The pill and radiation were what got her stable, showing no evidence of active disease. We got this great news on January 25, 2019 and we began preparing for bone marrow transplant. The hope was that her new bone marrow would kill any residual cancer cells.

Ariella was admitted to the hospital on February 18, 2019 for pre-transplant radiation and chemo. The transplant was on February 26, 2019 with her father as her donor. Though she didn’t feel well after her transplant things were going well, until they weren’t. On March 7, 2019 she was transferred to the PICU. She had strep pneumonia and also the flu. She was septic with a low blood pressure (the reason she was transferred) and requiring oxygen. She began to show improvements, weaning down on the oxygen but then had nosebleeds and began to require more oxygen support requiring intubation on March 15, 2019. I’m not going to go into all the ICU details and complications, but just say that we were so hopeful because she would show improvements. But then she would have a setback. This was the pattern for her entire ICU stay. Until finally she couldn’t recover from her setbacks. Ultimately she died on May 9, 2019 from respiratory failure and kidney failure.

If you want to read Ariella’s story from the very beginning you can at https://www.caringbridge.org/visit/ariellastein This will take you from diagnosis through ringing the bell at end of treatment. Ariella wanted to be able to share her own pictures and updates so we started www.facebook.com/ariellapaigestein near the end of her first round of treatment in November 2017. You can see the rest of her story there.