Author: stein28

When chemo finally started it was actually kind of anti-climactic. Ariella had been in the hospital a while already with the chest tube and hooked up to tubes and fluids so starting chemo was just a matter of hanging a different bag on the IV. But it didn’t take long for her to feel the side effects. She experienced nausea and vomiting and also a very severe headache when getting one of the chemo medicines. Ariella’s chemo protocol was 5 different chemo medicines, alternating between 2 and 5 day cycles. All of her chemo was inpatient (except a push of one of the meds into her IV a week following the 2 day round, in clinic) requiring inpatient stays every 2 weeks (either 2 nights in the hospital or 5 nights in the hospital, depending on which round she was on). Each round started 2 weeks after the 1st day of the previous so after those 5 day rounds she had only a little more than a week before starting the next. With each round her white blood counts dropped to 0 so she as was serious risk for infection. So going to school was out of the question. She had home/hospital schooling 3 times per week, even when she was in the hospital. By the time her counts recovered it was time for the next round of chemo. Following each round we had to give her injections daily to boost her counts for her next round of chemo. Those injections were a major source of stress and anxiety. Lots of crying and screaming and begging us not to do it. We eventually settled into a good routine with the injections but it was never easy for any of us. And they hurt. Even if the initial prick didn’t hurt so much, the medicine going in hurt her a lot. She described it as “burning.”

Ariella ran the gamut of side-effects. It took several rounds but her nausea was eventually pretty well managed. One of the medicines added to her anti-nausea regimen was Ativan which mostly helped. However at one point the nausea was really bad so they upped the Ativan dose. Ariella did not react well to that. She started hallucinating and was screaming and crying and making very little sense. There was nothing we could do but try to keep her calm and wait for the effects to wear off. Other side effects were fatigue, neuropathy (pain and tingling in her legs which was managed with Vitamin B and Gabapentin), mouth sores (thankfully only once during the entire treatment), headaches, and just generally not feeling good. Part of her protocol was taking glutamine powder 3 times/day which has been shown to prevent mouth sores. Ariella tried mixing with various drinks but no matter what had a hard time getting it down. She didn’t always keep it down either. Eventually we discovered that hot chocolate worked the best but unfortunately that ruined hot chocolate for her. She also no longer liked mint and other foods tasted weird to her. Her appetite was up and down but she did start gaining back the weight she had lost. Ariella had a Hickman catheter in which to administer the chemo. It meant she didn’t have to get stuck with a needle all the time but it also meant weekly dressing changes which were quite painful for her. It took a long, long time but eventually we found a dressing that was much easier to remove but boy did she dread those changes.

Ariella made it through the first 6 rounds of chemo without delays due to counts. This was not the case later on in treatment. She did require a few blood transfusions which was to be expected. After the first round we ended up in the hospital for a fever. Fevers are not something that can be ignored. Anything above 100.4 requires a call to the clinic and likely blood cultures to determine possible infections. If she was neutropenic (pretty much always between rounds of chemo) fevers meant admission to the hospital for IV antibiotics and because the immune system cannot fight off the infection. If fevers occurred outside clinic hours, a trip to the ER was required. We had several ER visits throughout the course of treatment. Prior to the end of those first 6 rounds of chemo we began discussing surgical options with the orthopedic oncologist. Surgery was to occur after those initial 6 rounds of chemo.

Ariella’s story, continued. You hear stories of people seeing a doctor for some symptom or another, and are immediately admitted to have port placed and start chemo. This wasn’t the case for Ariella. She went to the doctor at the end of January 2017 for symptoms and though it was pretty clear she had a tumor, official diagnosis didn’t come until near the end of February. We were going crazy, worrying about the cancer spreading while waiting for the diagnosis but they can’t just start treatment. All cancers are treated differently so we had to wait to make sure they used the correct protocol. In the meantime, prior to taking her in for her leg pain, Ariella was losing a crazy amount of weight and we couldn’t figure out why. Blood work didn’t show anything and we had scheduled an appointment with a GI doctor. However she had her MRI on the leg prior to the GI appointment and finally the weight loss was explained.

After official diagnosis things did move a bit more quickly. Ariella is a dancer and at that time she was working on a tap solo. Unfortunately she was no longer able to dance but we allowed her to perform the solo one time, at her dance studio’s showcase. The week after that her official diagnosis came and we met with the team at Sinai. We received an overwhelming amount of information and scheduled more scans and biopsies. After that Ariella decided she wanted to go to the dance studio to be with her other family.

Scans and biopsies determined the cancer had not spread and she was admitted to have her central line placed and start chemo. We were ready to fight this thing. However when the line was placed her lung was punctured requiring a chest tube. The chest tube was incredible painful and Ariella could barely move. There was excruciating pain when they were trying to unkink the chest tube at one point and ultimately they had to replace the 1st chest tube with a second larger one. We couldn’t start chemo until the lung healed and the chest tube was out and that took close to a week with Ariella in significant pain that whole time. Finally the tube came out and chemo started.

I wrote these on Facebook in 2018 as part of Childhood Cancer Awareness Month. I am currently sharing them there again in honor of September but also just wanted to put them here to be able to easily return to them.

In honor of childhood cancer awareness month I’m going to share Ariella’s story again in parts for those new to the page and to hopefully raise more awareness. We weren’t even aware of all the awareness initiatives, advocates and groups until nearing the end of treatment.

So here’s her story, part 1. Ariella had been complaining of leg pain in fall 2016. She’s a dancer so we didn’t think much of it. When she rested it, it got better. At one point we did have it x-rayed which showed a contusion, but we were just told to have her rest it and if it didn’t improve, see an orthopedic surgeon. It did improve, for a while. By January 2017 it was hurting much more, red and swollen. We took her to the orthopedist who x-rayed and then immediately sent us for an MRI. Not 20 minutes after leaving the MRI place we get a call from the doctor referring us to an orthopedic oncologist. The bottom dropped out. We were completely floored. Cancer was not even remotely on our radar. How could this be? It was a dance injury! This was the beginning of our life changing as we knew it. The next couple of days consisted of scans, tests and biopsies. The doctor suspected Ewing’s Sarcoma and after a couple of weeks waiting for results it was confirmed on February 25, 2017.

It’s that time of year again. End of summer. Back to school. A change in the air from the hot, muggy, summer days to the crisp, cool air of fall. Ariella’s birthday. Fall festivals, apple and pumpkin picking, lots of family activities. Was always my favorite time of year. I’ve recently written about the shift I’ve experienced in my outlook and grief, and that hasn’t changed, but that doesn’t mean the pain of losing Ariella is gone and this time of year is especially difficult for me. A time of year full of promise, new beginnings, a literal new year in the Jewish calendar is now marked by missed milestones, moments stolen from us, and always the wondering.

As each year passes I have more and more difficulty imaging what Ariella would be like at this age. She would no longer be a child and I see her friends and kids her age and it breaks my heart over and over. And it feels like I lose her again and again. I shared a post on Facebook about things one man learned when he lost his son and one of them was keeping a journal of things about the child. Funny things he said and did, and things of that nature. I had done that a little bit but I know there was so much I missed that I no longer remember. I thought we would have forever to make memories that I didn’t feel the need to record all the little moments. I didn’t think that one day that would be all I had. Who would think that? Anyway, some random things I would love to share about my girl.

• She carried a shit ton of things in her hoodie pocket, most being rocks. And sometimes she would sleep with them. There was frequently dirt in her bed from rocks. And these weren’t small, pretty, rocks. These were just big, jagged, rocks. I don’t know how she carried so much stuff. Oh and this started when she was little but she continued to do this even as an 11-year-old.
• Her favorite color was light blue but sometimes she would choose teal.
• She loved unicorns. And penguins.
• She was a prankster. She silly stringed her doctors and squirted them with water from syringes. She scared the crap out of a nurse by popping up from under the covers with a scary clown mask. One of her doctors gave her a fart machine and Ariella thought it was the greatest thing ever. After she died we found a list of pranks that she wanted to do on her friends.
• She had a list of tattoos that she wanted to get when she was old enough including a shark fin, peanut butter and jelly sandwich (this was supposed to be with a friend), a yin yang (also with a friend), an infinity sign, and I think a couple others (I do have the list, will have to check it again).
• She had a temper. She could go from zero to insane in a matter of seconds.
• She was sweet and generous and loving. She gave the best hugs.
• She was so freaking slow! When doing anything and everything!
• When she was little she called the remote a cremote, milk was gulk, a tunnel was a nunnel, and Barnes and Noble was Barnes and Narble. She said “what you said?” Instead of what did you say? And little billit instead of little bit.
• She loved photography and had a pretty good eye when composing a picture.
• She loved to make up dances and video herself.
• She was a dancer. Tap was her favorite.
• She was bossy (a leader?) but kids flocked to her. One day we were at a friends with a bunch of kids there and she had all the kids lined up behind her following her around the yard like the pied piper.
• She was the queen of eye rolling.
• She was friends with everyone and never held a grudge.
• One time she was so angry about being asked to wash her hands that kneeled on a step stool, put her head on the floor with her legs on the stool, and stayed there upside down a good while. She was definitely stubborn.
• She loved to read and still loved when we read to her. She was working her way through Harry Potter.
• She loved the beach. Ocean City was one of her favorite places. And she loved the Haunted House on the boardwalk.
• She was the furthest thing from a picky eater and she especially loved steak and sushi. She didn’t have much of a sweet tooth though she loved sour candy.
• She loved to talk. A lot.
• She was loud. Very, very, loud.
• She loved going to New York and seeing musicals. Wicked and Aladdin were her favorites. She got to see School of Rock through Do it For The Love Foundation and got to meet the cast and get a backstage tour,
• She loved volunteering at the Human Society. She got to pet and play with the cats.
• Ari’s Bears was her idea and she used her own money to get it started. She came up with the logo design as well.
• She was fearless. Her 11th birthday party was at an indoor skydiving place. Most of the kids did it but all were nervous at first. Not Ariella. At amusement parks the bigger, crazier the ride, the better. She loved going on boats but only if they went fast. She went flying down hills on her scooter and skateboard.
• She was a great hula hooper (she got that from me),
• She loved to ice skate.
• She was a great cuddler.
• She always wanted to comfort others who were sad.
• She was messy.
• She was strong and resilient and brave and optimistic.
• She was independent but also still loved spending time with us.
• Every once in a while she would say she wanted a sibling but mostly she said our family of three was perfect.
• She was sassy and could back talk like a teenager.
• She was thoughtful.
• She was kind, caring, and compassionate.
• She hated dressing up. Sweats were her outfit of choice.
• She donated her hair twice for wigs, way before cancer was on our radar.
• She was a great friend.
• She was the best daughter.

A while back I wrote some posts about running, about what running means to me and why I love it (Just Run), (Finding Meaning in Running), (Running Towards Memories) and I have realized lately that I have been losing that. My running has been goal oriented with training cycle after training cycle and I have no longer been fueled by my desire just to move, to be outside, but instead by paces, distances, and qualifiers. I did enjoy that, for a time. I liked seeing my progress, seeing what my body can do, achieving PRs, but now it just feels like a chore. Taking away all that I love about the sport.

The other day I had a bad run. A really bad run. Can’t remember the last time I had a run so miserable. Even when I was running on a stress fracture. And in between uninhibitedly cursing, contemplating calling my coach or an Uber to come get me, or just laying on the ground until another runner came along, I truly questioned why I was doing this. I enjoyed the training. I loved the exhilaration after completing a challenging workout. I looked forward to the long runs. I liked trying to achieve new goals. I thrived on the structure and plan, the concreteness of trying to achieve certain paces, of going a certain distance. Until I didn’t. My body needs a break. My mind needs a break. When I was on the trek and had a chance to run, whether it was to conquer the hills or just get some miles in, all I cared about was that I was running.  I wasn’t worried about pace, or time, or PRs. I just wanted to soar. To feel the ground beneath my feet and wind in my face. When I got home from the trek the thought of continuing to train for the marathon just no longer appealed to me. Running was becoming a chore rather than a pleasure. I had just completed 2 back to back marathons plus half a training cycle prior to that where I got injured. I was going to take a break after this cycle but wow I do not want to go out there for another 18-miler or 20-miler right now. I dropped down to the half marathon distance and while there is disappointment that I didn’t have a better training cycle, there is a much greater sense of relief. If I want to go out and run, I can. If I’m not feeling it then I don’t have to.

I want to get back to running just for the sake of running (at least for now). To be in nature, to not care about anything but how it feels, to hear the trees rustling in the wind and the birds chirping. To feel the crunch of leaves beneath my shoes. To be present in my surroundings rather than using music to distract me while trying to go faster for longer. I want to run with the joy I used to have, with the peace I felt when running on the trek, with the carefreeness of a child. I am going to try some trail running. If I don’t break my neck tripping over a root I think it can be just what my soul needs to help revive my love of running.

As mentioned previously, when I set off to do this trek it wasn’t with the intention of trying to find myself or some such shit. It just seemed like an epic challenge for a good cause and I wanted to see if I could do it. But you can’t do something like that and not learn some things. So in no particular order, here are some things I learned on the trek.

• That bike riding is most definitely not for me
• That I can open a beer bottle without a bottle opener
• Some new words
• That I can be happy, maybe not 10/10 happy, but up there, and that I’m ready to be happy
• That I can be silly, playful, and carefree
• About the trekkers and support crew
• That I can be more gutsy and less anxious
• That I can trip over nothing, frequently
• About succulents
• That life is beautiful even with its ups and downs (I once knew this and now I know it again)
• That it’s possible for me to not have an appetite (that never happens)
• That I don’t need to suffer anymore
• What it’s like to see in color again
• About 7 incredible kids
• That walking for hours is quite meditative BUT…
• Running is still my happy place
• That you shouldn’t run hard after eating pizza and half a chicken sandwich
• That this physical and emotional challenge did not come even the slightest bit close to what Ariella and the other children endure(d)
• To be careful when opening a package of chews
• That slurpees expand
• That I can doze off during a tattoo (ok this didn’t happen during the trek but the day after it ended and it commemorated the trek so it counts)
• That I want to live: Ok. So this one is the big one. For early readers of my blog you’ll know that while I was not suicidal I frequently begged G-d to die. I pictured driving my car off a bridge or into a tree. I begged Ariella and my dad to take me with them. While I would not have done anything about it, I did not want to live. As time went on, I no longer felt quite so desperate to die but I would have welcomed death had it come. I most definitely did not fear death. I didn’t feel I had any purpose, anything to live for. With no other children to care for I felt aimless and that life was meaningless. Picturing another 40 years or so living like that was horrifying. But during the trek I felt happy, and I feel happy still. Parts of me that had been dormant for so long came alive again. I realized I can live, not merely survive. And I realized that I actually WANT to live.

When I first showed up at the meeting spot before heading to Deep Creek Lake, just about everyone there was a total stranger. It didn’t take long though before we started getting to know each other, listening to each others’ stories, and learning why they were doing this. These people made the trek what it was. Everyone had their struggles and everyone had their strengths and we all were able to help each other through this immense challenge. And watching everyone power through and get past their difficulties was quite inspiring.

Let’s start with David. David who had knee surgery less than a year ago and was still experiencing discomfort. He was determined to complete the miles, even when in pain. When he could not do the walking park he jumped on the bike and rode those miles, often trying to get traffic to slow down for the walkers, along the busy, curvy street. There were several times he doubted he could continue but he didn’t quit. Beth was who I wished I could have been. Also terrified on the bike she didn’t let that stop her from riding the treacherous mountain roads. She faced her fears head-on and kicked ass. She also used her strength to run up hills and mountains, leaving others in the dust. Jacki exhibited a quiet strength, looking like she was just out on a Sunday stroll, while Kenny was more vocal, ensuring everyone it was a “piece of cake” and being sure to encourage those he knew were struggling. Michael with his grit and determination did not let his struggles stop him and was always ready with a song to pass the time and a kind word for those who needed it. Stealthy Mark could sneak up on anyone and could make you laugh with his deadpan humor. He’s also just a little bit competitive, but good naturedly. And Justin. Who started the whole thing. Who would never leave a single word unsaid to promote his cause. He started the trek alone 10 years ago and now he has an amazing team of trekkers and support crew that return year after year. He kept everyone going and I would bet on him in a scuffle. The attention he brings to childhood cancer is important and highlighting the children and their families puts faces to the disease, making it personal. (sounds like we were some ragtag version of The Breakfast Club).

We were more than just a group of people walking and cycling across the state. The support crew are essential and I would dare to say they have the harder job. We just had to walk or ride. No thinking, no logistics, just move. The support crew, they had countless tasks to take care of to make sure we were hydrated and fed and had all the supplies we needed. Loading and unloading, lifting, filling bottles, replenishing the supplies, putting on band aids, making sure no one got dead, and being at all the stops. Their days were long and yet they managed to stay upbeat and encouraging, helping us power through. There was Anna who allowed us to trash her van with sweaty, smelly clothes, food wrappers, trekking poles, and all sorts of other detritus. She drove us to the start points and from the end points, and even drove some of us home after the trek ended. She took no shit and made sure to keep things moving. Without her we might still be at a rest stop. Sharon aka Shabay. There is no way to describe her energy. If only it could be bottled. I will be forever grateful to Sharon for making sure I took the chance to fly when I needed it. Cathi I think had one of the best roles. She is the family liaison and is fortunate to get to spend time with the families we honor. And Val making sure we were fed and had rooms to sleep in. I can’t forget Larry who is the calm balance to the frenetic energy. Even-keeled and patient, Larry makes sure everyone knows where they are going (though there was a sketchy pin to Anna when I was riding with her, leading us down some private dead-end drive with no trespassing signs), what time they have to be there, and whether we are on or off schedule. He is the luggage and bike loader/unloader and makes sure to keep everything moving. And ironically he kept Justin apprised of the weather.

I spent a good amount of time with the media team when the others were biking and we had a lot of laughs. Bryna who would do anything for the shot, including getting shoved into a squall, trying to boost the social media presence. She was careful to capture the emotions of the day or story, but not be intrusive. She also is making the golf ball cannon at our golf tournament possible. Katrina who has no fear when trying to make things happen such as closing roads and stopping traffic, but is sensitive enough to remove a dead cat from the street. And Jeff who stayed up late editing the videos and was ready early the next day to do it all again. He also will do anything for the shot, like staying out when the apocalypse is approaching . Jeff is a sponsor for our golf tournament and is going to make a video for Ari’s Bears and I can’t wait to see what he comes up with. I know it will be incredible.

Shannon worked behind the scenes for the kids trek and much, much, more , while continuing to treat the children they serve. Her relationships with the families and children is truly something special. I know this because I witnessed it with Ariella. Ariella loved Shannon and Justin and even texted Shannon a few times. Shannon made it a point to be with Ariella when Ariella died. Watching anyone die is heartbreaking. Watching a child die is excruciating. Someone who chooses to be there is exceptional.

None of these words really fully capture the essence of these people and the connections we made. But the trek wasn’t just about us or Ariella or raising money. It was also about having this experience with others, becoming a family, sharing the struggles and the triumphs. Having someone else understand what we are going through. Whatever happens moving forward we will always have this to tie us together.

This may be a Part I because I will be reflecting on this experience for quite a while, but just felt like writing. Reality has hit a bit hard. I’ve been buffered from life basically and woke this morning with many things on my list that I was not able to address on the trek. After paring down my emails while doing laundry I had some other challenges to face. During the trek emotions ran high at times and some realities came to light. That is not just my story to tell so I won’t be sharing it. I’ll just say I am doing some soul searching.

I feel pretty wrecked at the moment. And yet I also feel at peace. Because I realized during the trek that I actually can be joyful and carefree, without guilt. I can live with reckless abandon. Just let go, not care what anyone thinks, and actually enjoy life. I can be silly and unrestrained and it’s okay. I feel different. Definitely changed. Even more willing to step out of my comfort zone. My anxiety, which is typically the main character in the story of my life, took a secondary role. Instead my playfulness and lightheartedness broke through. I hardly recognized myself. I’m sure it will come and go but I know it’s in there.

I’m not sure what will happen in the days and weeks to come. I do know that I want to live with no regrets (or at least as few regrets as possible). I’ve been stuck and this is not to say that I’m moving on from Ariella’s death. There is no moving on from that. But there is moving through, carrying the grief with me, while I experience the highs and lows of a life well-lived. Knowing that there is room for all of it. The happiness, the tears, the fear, the hope, the sorrow. What better way to honor Ariella than to bring her with me as I experience all that life has to offer.

As mentioned previously I didn’t join this trek as a way of finding myself. I joined for Ariella of course, and the other children, and to challenge myself, but I wasn’t expecting any kind of aha moment. But there were serendipitous moments where I truly felt happy and I realized that I don’t need to suffer any more. That doesn’t mean the pain is gone, but I can find the things that bring some happiness and let go of those that don’t.

In all honesty most of Day 7 is kind of a wash for me. It’s mostly biking so I’m not doing much trekking until about 2 miles outside of OC, which of course is upsetting. I did get in some running miles before we rolled out giving me some of that movement and physicality I crave and at least allowed me to make up some missed miles.

The finale of the trek was a 2-mile walk into Ocean City, MD, all the way into the ocean. This was absolutely the most challenging leg of the trek for me. The last time I was in Ocean City was with Ariella. She loved everything about Ocean City, the beach, the ocean, the rides (the bigger and faster the better), the boardwalk, the haunted house. Just being there brought back so many memories. My emotions were impossible to manage and I didn’t try. The tears were flowing, I was holding the kids we walked for, both in my hands on the sign and in my heart, and made that painful trek down the boardwalk, across the beach, into the ocean. Before we got to the water I saw Ariella’s friend and just grabbed her and held her, missing so much the feeling of Ariella in my arms, her arms squeezing me tight. The tears kept falling. Arm-in-arm David, Sydney, and I walked down to the edge of the world and stepped into the water with the rest of the trek team. This was it. One challenging week. And it was exciting and happy and we were all so proud and accomplished, and I was so very sad. After others came out of the water I just stood at its edge, staring out into the beyond, and just felt so small. I should have felt larger than life and in some ways I did but I also just felt so insignificant. I was overwhelmed just trying to take it all in. I wanted to walk all the way into the water and just let the current carry me away. As we walked away from the water I felt I was walking away from something rather than back toward something. Maybe a little of both.

I cannot possibly capture the emotions and essence of the trek with mere words. It’s something you just have to experience. It is inspiring, it is overwhelming, it is challenging, it is exhausting. Emotions run high. There were times it was fun and stretches that were boring. It brings out every emotion possible. Everyone had their moments where they felt strong and unstoppable and their moments where they struggled. But we all had each others’ backs and encouraged each other through those challenging times. Looking back to the beginning of the week, it all seems so surreal. Sunday seems so far away and yet the week flew by. We were completely out of real life for a week, in a trek bubble. Early mornings, long days, and being with the same people day in and out. The idea of completing something so magnificent is quite daunting but when you are out there walking, time just passes, and somehow so do the miles. It became meditative and therapeutic. We spent all our time with our fellow trekkers and incredible support team. Strangers to begin with we quickly bonded and became a family. We learned each others’ quirks and habits and there was a lot of good-natured teasing and humor. It is a special thing to share this experience with others.

I’m not ready or able to begin processing this experience and I’m not sure how to go back to reality. But I have learned some things about myself and rediscovered parts of me that I forgot existed. I have been living in the dark for so long and I feel like I am now emerging into the light.

On the way home, coming off the high of the culmination of the week, we learned of a second relapse of another child we know. Life sure is a rollercoaster.

The days are beginning to blur, clearly, since I said it was day 5, not 6 on my Instagram post earlier this morning. Sat outside and enjoyed a gorgeous sunrise over the water, just taking in the beauty of my surroundings. There was a gentle breeze kissing my skin and lifting my hair, and I just got lost in the tranquility of the moment. Soon enough it was time to get the day rolling.

Another trekktacular (#neoligism #word of the day) day was ahead of us. A sunny and hot walk followed by a bike ride. I don’t have much to write about this day, not as noteworthy as some of the others. Just a long, hot, trek. Some hills but mostly flat, very boring stretch of road. Once again bummed about the biking but it is what it is. Enjoyed shenanigans with the media crew while waiting for the cyclists to finish. Dinner at Outback and the day was a wrap.

Not much else to say about the day so going to end it there. It’s hard to believe this experience is almost over. It’s been life changing for sure. Will have a lot to process once it’s all over.