Month: July 2019

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Not Okay

Every time someone asks me how I’m doing I usually respond with “okay” or surviving”. The truth is though, that while I guess I am surviving I am not even close to being okay. I’m either not doing well or worse. There is no okay about it. Even when I look okay I certainly don’t feel okay. Words cannot begin to accurately describe how I feel. Words like shattered, heartbroken, devastated, broken, anguished, despairing, wrecked, traumatized and crushed could be used to describe how I feel but even they don’t grasp the depths of the emotions. I feel all those things to the extreme. What I do know is okay is not an adjective that fits. There is nothing okay about this. There is nothing okay about how I feel. So when I see you and tell you I’m okay, know that I’m really not. I don’t know when I’ll be okay again.

I’m sitting in Starbucks waiting to meet someone. Now playing on the radio is Elton John’s Tiny Dancer. A song played at Ariella’s funeral. Cue waterworks. How am I supposed to function in life when I can’t go in public without the threat of tears? How can I function when the smallest thing can trigger that huge wave of grief to come crashing over me? I did visit Ariella before coming here and asked for a sign. Maybe this is my sign. I don’t know. But it hurts.

No one really knows what to say to a grieving parent. Hell, I don’t even know the right words to say because there are no right words. And that may make it difficult to approach a grieving parent. That may be why grieving parents tend to lose friends and family. Because they stay away because they don’t know what to say. Don’t say nothing. That is isolating for the grieving parent. But be honest. Say “I don’t know what to say.” Say “I’m here for you”. Say “I’m listening.” Say “I’ll sit with you. We can talk or not.” No words are going to give comfort but your presence just might. We used to have a mailman that we talked with regularly. He did our route for years. He knew us and Ariella and always made sure to chat with us if we were outside when he was bringing the mail. He was also my father’s mailman and when my father was in Florida he always checked on him, asked how he was doing. After Ariella was diagnosed he always asked after her as well if he didn’t see her. We hadn’t seen him for a while recently and I guess his route changed. He knew Ariella had relapsed last year but we hadn’t seen him since she went in for bone marrow transplant so he had no idea about the ICU or any of it. One day a few weeks ago David saw him and he asked after Ariella. David had to tell him. The next day he was on our route again and he went out of his way to knock on our door to express his condolences to me. He didn’t say much. He didn’t know what to say. I don’t even think he said as much as sorry. Because he knew. There are no words. He just gave me a hug. And that was all that was needed. I know that had to be hard for him. Many just avoid the grieving parents. But he didn’t. Even though he didn’t know what to say he made sure to be there. To let us know he was there. Even when he didn’t have to.

I know most people are well-intentioned so I didn’t want to do a “what not to say.” But some things have been said to me that really rub me the wrong way. Not only do they not help, but I even found some of them to be hurtful. Things like “she’s in a better place.” I disagree. I cannot conceive of a better place for a child than with her parents. Whatever your beliefs, they are not mine. “G-d needed another angel” or “it’s in G-d’s plans” or any other reason having to do with G-d. Again that is not helpful at all. Because I don’t care what G-d’s plans are. Our daughter should be here with us. To me there is not a single good reason for a child to die. None whatsoever. Nothing about G-d’s plan can make up for not having our daughter here on earth with us. “Everything happens for a reason.” Another nope. Again there is no good reason for a child to die. And say there truly is a reason, to make parents suffer a lifetime without their child until they find out the ultimate reason or plan is not okay. If it truly is G-d’s plan (which I don’t believe) I want to know it right here, right now because this life I’m living, without reason or purpose, is torture. Any sentence that starts with “At least…” There is no single “at least” out there that will make the death of my child worth it. None, zero, zip, zilch. Again, I know it’s well intentioned but it really bothers me when it doesn’t occur to people that my beliefs may be different than yours. I’m not sure how many times I’ve been told that Ariella is okay because she’s with Jesus. We are Jewish, not Christian. Our beliefs about G-d and the afterlife are different. Telling me she is with Jesus completely disregards the fact that there are many religions out there with different beliefs so to just assume we believe the same thing is not okay. Comments like that are not helpful in the least, even if that’s what you believe. I’m happy for people who have strong faith because I just don’t anymore but putting your faith on me doesn’t provide comfort or peace. A simple “I’m sorry for your loss” will suffice.

Finally, if I’m talking about how hard things are or how poorly I’m doing, don’t turn around and make my grief about you. Don’t tell me you are feeling the same way about the loss of Ariella. Because you’re not. Only David can tell me that. We understand that everyone who knows and loves Ariella is sad and grieving in their own way. But it doesn’t compare to what David and I are going through and we cannot carry anyone else’s grief. No matter how much I write, how much I try to explain, no one other than parents who have been through this can begin to really understand how we are feeling. I am exhausted and can only deal with my feelings right now, and David’s. I don’t have the energy to comfort others. Just agree with me that it’s shitty. That it sucks. Don’t try to fix it by using meaningless platitudes or telling me that you feel just as awful. Don’t diminish my feelings by trying to make them go away. You can’t fix it, you can’t make me feel better. I can’t speak for all grieving parents but I do think it’s safe to say that most just want a comforting presence, someone who will listen or just be willing to sit quietly, and who will agree that the situation is horrific without trying to fix it.

I know people who make the above comments are just trying to provide comfort without really knowing the right words. But those comments do not take into account the fact grieving parents may have different beliefs than you. And all any grieving parent wants is to have their child here with them. Nothing else will make it better.

This post is kind of all over. But that’s how I’ve been lately. My mind doesn’t focus on one thing. I get distracted and can’t focus on anything and my mind wanders. I guess I’m just saying this to remind anyone who sends messages or texts, that if I can’t respond immediately I most likely will forget to respond. I’m not ignoring you on purpose. My brain just isn’t functioning well these days. Don’t take it personally.

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Baseball

Baseball games are fraught with memories. From a young child some of my favorite memories are of going to baseball games with my father, including when the Orioles won the world series in 1983. David and I carried on that tradition with Ariella, bringing her to games from a very young age. None of us are huge baseball fans but we always enjoyed the atmosphere of the games. We like the food, the energy, the music between innings, and the overall excitement. So with the memories of the games with my dad, the memories of the games with Ariella, and the memories of the games with my dad and Ariella together, I knew I was taking a risk going to an Orioles game. I also knew that I didn’t want to lay on the couch and stare blankly at the TV while David went to the game. So I told myself it would be okay, we would be among good company, and if nothing else it would get me out of the house.

And it was okay. The company and food were good. Better, the company and food were excellent. Yes there were tons of memories at the stadium but they didn’t take over. That’s the thing, I never know what I will be able to tolerate and what will sucker punch me in the gut until I’m in the situation. But even though the memories weren’t in the forefront, I just couldn’t find myself caring at all about the game or really enjoying myself. To be fair, the attendance was paltry so the energy overall really wasn’t there. In fact David and I were hoping to see the other team pull off a no hitter since the Orioles were playing so dismally. But really, I was just going through the motions. When previously I would dance between innings, get into the music and get into the atmosphere, now I just felt blah. I had no interest in any of it. And Ariella should have been there. I was missing trying to embarrass Ariella with my dancing, missing trying to get her to dance, missing her trying to get on the screen (which she did a couple of times), missing her waving her signs she always made, missing her booing the other team at the top of her lungs. Whereas before I could go to games without her and enjoy myself, now I know what is missing. This is how my life is right now. Just going through the motions. I can’t even fake it. Faking it takes too much energy. It’s too exhausting. And frankly, I don’t want to fake it. I know it may make others feel uncomfortable or awkward but I just can’t care about that. I don’t take pleasure in things I used to find enjoyable. Everything is dull, muted. Things that used to make me smile, just don’t. The pleasure I felt at the golf tournament seems so removed from how I feel overall that it’s hard to believe it even happened. This isn’t living. This is just existing.

Most parents I have communicated with that are further along this journey than we are have said they did start living again. It took a long time, years, but they began experiencing joy along with the sadness. I just can’t imagine that that day will ever come. I don’t know that I want it to come. How can I be joyful in a world where I am missing the most important part of me? But how can I survive with this incredible sadness? Which never will go away. That is the consistent theme among bereaved parents. The sadness never goes away. You just learn to live with it.

How does one survive a lifetime in such despair? I’ve read a lot of books on grief. Some have been helpful. They have been helpful by assuring me we are not alone in this and our feelings are normal. And in many of them you can see the long term and know that overall most bereaved parents end up doing ok. Many of the books I have found are Christian based, which I don’t relate to. Jews have different beliefs on the afterlife and in all honesty I have no idea what I believe anymore. It just devastates me to think that a sweet soul like Ariella and all the other innocent children who have died only get a short amount of time and that’s it. I do like to believe that there is more for them, but do I really believe it? I don’t know.

What I do know is that every experience now is tainted because Ariella is not a part of it. It just won’t be as good as it could have been. We know what’s missing. We will always think that Ariella should be there. How do we live a lifetime like that?

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Angry

I am so angry. Angry at everything. Angry at Ariella’s doctors for not saving her. Angry at science. Angry at medicine because with all they can do, they couldn’t fix her lungs. I am angry that it was Ariella and not me. From the moment of diagnosis to her last breath I begged and pleaded to let it be me. I am angry that childhood cancer is considered to be rare and only receives 4% of federal research funds for all childhood cancers combined. I am angry at G-d and I’m not sure I even believe in G-d but If there is one I’m extremely angry at him. I understand with G-d that there are still bad people because G-d gave us free will. The world wouldn’t be perfect even with G-d. But I really struggle to imagine that there is a G-d in a world where children die from cancer.

I get angry every time I see a post of a childhood cancer survivor. I’m happy for them, of course I am. But I’m angry that my child isn’t there with them. Ariella should be. Her prognosis at initial diagnosis was good. She had everything going for her with a Ewing’s diagnosis; her age (she was 9), she’s a girl, the cancer was localized, and it was in her leg. All indicators that she should have had a good response to chemo. She should have never relapsed. She should have survived. And yet. And as ugly as it is I’m extremely jealous. Jealous of those families even with kids still in treatment because their children are alive. Jealous of happy, healthy families with no significant worries. Again of course I’m happy for them. I wouldn’t wish this pain and heartache on anybody. But I’m angry that our daughter was taken from us. I’m angry that we lost our roles and identities and our carefree existence. And I’m angry every time I hear of another child dying or being diagnosed with cancer.

Someone close to us was just diagnosed with prostate cancer. I’ve been taking him to his appointments and been a source of comfort throughout this. I’m glad to be able to be there for him but I am so angry that cancer has touched us again already. Thankfully it hasn’t spread and is treatable. But it never ends.

I am angry and irritated with the people that complain about petty problems. Today at the locker room in the gym I listed to a lady rant about how someone parked for a good 5 minutes, dropping the f bomb left and right. I wish my problems were so minor that I can get so worked up about how someone parked. I see it all the time, people love to complain. They can’t see how blessed they are. And that makes me angry. Even though right now I feel the farthest thing from blessed, I was blessed to have the opportunity to be Ariella’s mom. I’m angry that people don’t realize what’s truly important in life.

I am so grateful for the outpouring of support that I am still getting. But I am so angry at those who should have been the first to reach out and the ones that should continue to check on us, that haven’t since Ariella’s funeral. I know I should let them go, not waste my energy on them but it’s hard when you are going through most horrific experience anyone can go through and those you expect to be there for you aren’t.

And finally I’m angry that this is me right now. I don’t like this version of me. I don’t like being angry and jealous and bitter. It’s so much to carry along with the sadness, which is crushing. My whole body feels leaden, weighed down with all of these emotions. Sometimes the emotions are so powerful that they literally bring me to my knees. And it’s sad and scary and overwhelming to imagine the rest of my adult life like this. I still beg everyday for something to take me, to end this pain, and reunite me with Ariella.

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Blue Orbs and Breakdowns

In my previous post about signs I forgot to mention the blue orbs. When we went to Jamaica two days in a row there was a rainbow circling the sun. In the pictures both days there is a blue orb. Some time about a month later at home I again saw a rainbow around the sun. And in the picture there is a blue orb.

I heard all sorts of different explanations for the orb. Some were quick to explain the scientific reason orbs may show up in pictures. Something about the light and dust and angle of the camera. Others truly believe that the orbs represent spirits trying to communicate with you. Blue orbs supposedly indicate spirit guides or a guardian angel. I have taken many pictures of many rainbows and sunrises and sunsets and not once have I had these show up in pictures until after Ariella died.

Ariella’s friend’s mom sent me some pictures yesterday she took of her daughter. Her daughter was talking about Ariella, about how they would have danced with the fountains together, right before these photos were taken. In every picture she took of her daughter, the orb was there.

She too has taken many pictures at this place and never once seen these in the pictures. As I mentioned in my previous post, I’m skeptical about signs but this does give me something to think about.

On another note, my safe place wasn’t so safe today. I’ve finally been going to the gym or running fairly regularly but today at the gym I was triggered by a song. I had to go in the locker room and have a good cry for several minutes. And that’s why I get so hesitant to go out. I never know what’s going to trigger me. Well right now everything is a trigger. Everything either reminds me of or makes me think of Ariella. But in this case it hit much harder and I couldn’t hold it back. After several minutes I was able to pull myself together and finish my workout. I just hate knowing that this could happen again at any time, even in public.

Going out alone right now is like walking through a minefield. I’ve only really been to the grocery store or post office by myself. Post office was generally okay but the grocery store has been difficult. I am worried about running into people, mostly people I don’t know well. I’m worried about having to talk to people if I’m not up for talking. I’m worried about having to tell someone who doesn’t already know. I’m worried about being triggered and having another public breakdown. I feel like I’m tiptoeing through the store, peeking down each aisle to make sure it’s safe. Have to dodge all the potential bombs. It’s exhausting. Forget about going to stores like Target or other retail shops. Just the thought makes me panic. The people, the lights, the noise, all the items I would buy for Ariella, it’s all so overstimulating and the thought of it alone is enough to raise my heart rate.

The other issue I have is my distractibility. I lose focus very easily so I find myself in the store staring off into space or just stopping in the middle of an aisle. It’s hard to find what I’m looking for on the shelves and I just feel so exposed. It’s crippling.

Some days it’s not even minute by minute. Some days it’s second by second.

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Signs

Two months. Two months she’s been gone. Two months filled with heartache and despair. Two months of quiet, of emptiness, of earth shattering sadness. I have minutes, even hours where I may feel okay. Especially when at the gym or running. But then. Then the grief wave hits me and knocks me to the core. I feel it physically, in my stomach, in my head, in my bones. Reminds me that this empty, quiet life is forever. Forever is a long time. Forever is too long. I’m two months away from my daughter. But two months closer to death.

I was never one that believed in signs. What others viewed as signs I viewed as coincidences. But now I desperately look for signs that Ariella is present. Rainbows. We had a lot of rainbows after she died including the day after at our house and again at the shiva house. We even had a couple of rainbows in Jamaica and then greeting us when we came back from our trip. Are they signs? Or would they have happened anyway?

When Ariella was in the hospital she painted this picture. I don’t recall if it was before or after bone marrow transplant but it was before the ICU. Ariella picked the quote from the song Three Little Birds. She believed everything would be all right. After she died I got a tattoo with the 3 birds. The other day I was walking our dog and saw three little birds in a line on the ground in front of me. Was that a sign? Or just a coincidence?

Ariella participated in a program at the hospital called Beads of Courage. For every treatment, every procedure, every needle stick, every transfusion, etc. she received a bead. The color and shapes each represent a different procedure. The last bead she got was the butterfly. That’s the bead for gaining angel wings. I got that butterfly tattoo on my foot.

The beads in the jar are from Ariella’s treatment at Sinai, including initial relapse treatment. The ones in the bowl are from her time at Hopkins, February to May.

So back to the butterflies. Butterflies in general are often viewed as signs from a loved one. But there are butterflies all over the place in the summer. How can that be a sign? They would be there whether or not a loved one had died. But five days in a row big butterflies flew around me and landed nearby. Three times I saw a bright blue butterfly and once I saw a yellow butterfly.

So I question once again, coincidence, or signs?

Other possible signs. Ariella always tried to catch 11:11. She often missed it but when she did catch it she always made a wish. Soon after Ariella died I often saw 11:11 without trying. I also saw 1:11 quite a bit. Recently I often look at the clock and see any hour with 11 minutes, like 8:11, 3:11, etc. Does 11 mean something? Do ones? Maybe I just notice it more now. Clouds too. Ariella and I loved seeing shapes in the clouds. But since she died I see shapes constantly that remind me of her; unicorns, a bear, a butterfly, the letter A, three little birds. Does that mean something, or is my mind wanting to see those images and I’m seeing something that isn’t really there? Ariella loved to draw, color, paint, and create things with clay. I do like to think of her using the clouds as her new medium for artistic expression. I can just imagine her drawing with the clouds and molding them to form her shapes. I can also imagine her getting frustrated with it since clouds aren’t stationary! I can just hear her grumbling in frustration that the clouds weren’t staying where she put them.

Finally, our dog. We adopted our dog, Sherman on June 4, close to a month after Ariella died. Sherman spends a lot of time in Ariella’s room by himself. He takes his toys out of the basket and brings them upstairs to her room and leaves them there. If I put them away he immediately takes at least one out and brings it back upstairs into her room. Does he know something we don’t? Does he sense her presence? Or does he just like that space?

I’ve been reading books on near death experiences and I like to believe that they are real. But I’m skeptical. I would love for the signs and the experiences people have had to be real. That means her presence is around and we will be reunited some day. But it’s hard for me to really believe even though I am constantly seeking signs. It just makes it even harder to think 11 years is it for her. That it’s over, done, nothing else. So are the signs I’m seeing real, or imagined because I need them for comfort? Who knows? I would love to hear about signs you have seen after the loss of a loved one. Or if you had a near death experience, I would like to hear about that too.

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Ari’s Bears

For those that may not know, I’ll give a little history about Ari’s Bears. When Ariella was in treatment initially she received all sorts of packages and goodies from various organizations. The gifts she received helped her get through the tough days. She was particularly inspired by Jessie Rees, a girl who had DIPG, but still wanted to help other children fighting cancer. She did so by creating Joy Jars that were stuffed with various toys and things such as earbuds and socks and all sorts of fun items. Ariella looked forward to receiving her Joy Jars and decided she also wanted to make sick children feel better. She had the idea to go to Build a Bear, make bears, and deliver them to children in the hospital. Instead of birthday or Chanukah gifts she asked for gift cards to Build a Bear. She earned points for tough treatments in the hospital and redeemed those points for Build a Bear gift cards to make bears for other children, instead of getting something for herself.

We started small, just by bringing bears to her clinic appoints and hospital stays. But Ariella really wanted the foundation to grow so we became a Founding Hope Fund under the American Childhood Cancer Organization. Ariella hand delivered bears to 8 local hospitals and respite houses and mailed many out of state. It was so great to see the joy she got by making the other children happy. Even when she was inpatient in the hospital she brought bears to distribute. And every weekend she wanted to go to Build a Bear to make more bears. She loved bringing friends along and we especially had fun dressing them and picking out cute accessories.

When Ariella died we knew we had to continue with Ari’s Bears, as hard as it may be for us. Ari’s Bears is her legacy, it’s what she will be remembered for, her impact on others. And it is hard to continue with Ari’s Bears, but it would be impossible not to continue. We are growing, and in the process of filing paperwork to form our own non-profit rather than stay under the umbrella of the American Childhood Organization. It’s heartbreaking that Ariella is not alive to realize her dream of having Ari’s Bears in several states. It’s devastating that she will never fully realize the impact she had on people. It feels wrong to do Ari’s Bears without her but I know she would be angry if we didn’t. And again, it was her passion, her idea, and we need to be sure her legacy lives on.

Today I went with a friend and some girls to the hospital where Ariella was initially treated, to distribute bears. I thought it would be impossible to step through those doors, but it was okay. Though Ariella had some rough times in that hospital, we always knew there was an end in sight. And she actually had some enjoyable times as well. Even going in the playroom was okay. She had a lot of good moments there, playing foosball, watching movies, doing crafts, playing games, and chilling on the waterbed. We spent so much time in the hospital that we got used to it, it felt comfortable, and we managed to make the best of a bad situation. But being there giving out bears without her, that was hard. She should have been there, setting up the bears just so (she was very particular about how she set them up). She should have been there, sharing her story, instead of me. She should have been there, challenging me to a game of foosball while we were there. Being there, without her, was so incredibly difficult. Only made up for by the joy we brought to the children.


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Exercise and Routine

It never ceases to amaze me how long it takes to get into shape, and how quickly we fall out of shape. I used to exercise daily either by running or going to the gym. I used to love running and was actually pretty fast. I hadn’t exercised since Ariella was in the PICU. Even though I was home some nights and still working part time I was too exhausted to drag myself out of bed to get to the gym before work. You see, nights in the hospital were not conducive to sleep. Nights were fraught with beeps and alarms, vital signs and transfusions. Some nights the lights had to be kept on and doctors were in and out throughout. So even though I did actually get fairly good sleep at home it was not enough to make up for the lack of sleep when in the hospital. After Ariella died I wasn’t motivated at all to do anything, much less exercise. I honestly didn’t care about taking care of myself. What was the point? Nothing mattered.

I finally decided that it was time to do something. Even though I don’t much care right now about my health I realized down the road I just might and would regret not taking care of myself earlier on. So a couple weeks ago I forced myself to go to the gym. Not necessarily on a regular basis but to try to get back into a routine. The gym is actually one of my safe places. I don’t know many people there and those I do know, know my situation and will ask how I’m doing but stop there unless I pursue it further. I’ve been doing some classes at the gym and it’s actually quite therapeutic. It’s an hour or so of distraction from reality. And it also helps to kill time. By the time I roll out of bed and get myself together, take our dog for a long walk and then go to the gym, I’ve managed to get through half a day. I’ve been running twice. I am nowhere near where I was when I was running on a regular basis. I think part of that is because I hadn’t exercised in a while, but I’ve also noticed that since Ariella died my heart rate and respiratory rate are higher. And sometimes I find it hard to breathe. Stress and grief impact your physical condition and that combined with an increased heart rate from exercise makes it quite difficult. But again it’s therapeutic. So I will keep trying.

Though it helps to have the structure and routine and to get out of the house for a bit so I’m not lying on the couch all day staring at the walls, it also saps my energy and at times makes me panicky. There comes a point anytime I’m out that all of a sudden, I’ve had enough. I need to be home. I’m careful about what I agree to do because I need to make sure I have an escape if I need one. I’m worried about going back to work because of this. On the one hand it will be good to be able to fill my days but on the other hand I’m terrified that I will breakdown and not be effective at my job. I have a very hard time concentrating on anything and I can only hope that work helps channel my attention into the job so I’m not so distracted by life.

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4th of July

Ariella always loved the 4th of July. We spent several of them at the beach which she really loved, but we also enjoyed the 4th when we were home. Barbecues and fireworks with friends would be a typical 4th at home. She loved sparklers and poppers. Really she loved anything that made a lot of noise. She certainly was loud!

Two years ago July 4th was spent in the hospital. Ariella did not let that stop her from being festive. A friend brought us burgers and Ariella had a great time making fireworks decorations for her room. She had a chest tube at that time because of the 2nd pneumothorax but that did not stop her from getting to see fireworks. Nurses arranged it so that we were able to watch the fireworks from the helipad. It was definitely a neat experience. One that at the time I would have rather not had (because we had been in the hospital for quite a while by this point and who wants to spend any holiday in the hospital) but I would give anything to be back there. Because though she had cancer she was alive and we were optimistic that she would be ok in the long run.

David and I spent the 4th with some friends. It was bittersweet. Ariella should have been there. We are friends with the 3 families we spent the day with because of Ariella. Ariella danced with their children. Friendships made because of Ariella will be tricky to navigate. Because I have to watch their children do all the things Ariella should be doing. Many friendships were made because of our roles as dance moms. I am no longer a part of that world. Some friendships with the dance moms are stronger than others but I don’t want to lose the connections I made. And yet. As the kids continue with their dance and the next dance season starts I worry it will be too hard to see those moms. Because their kids get to move on, grow up, enjoy their passion for dance. So much of the time spent with the moms was at the studio or competitions. I don’t get to do that anymore.

Some of Ariella’s friends have been texting me, to check in and tell me about their days. I love hearing from them. I want to watch them grow up, celebrate their achievements and milestones with them, and basically just live vicariously through them. But that is also bittersweet. But I think maintaining a connection with her friends helps me forge a different connection with Ariella. Because she was different as a friend than as a daughter. So it’s worth it.

That all said, I truly do want to hear about friends’ children. Just know that sometimes it may be too hard.

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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.

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Sleep

Just a note, after I finished writing I realized it may be too graphic for some to read. I didn’t go into much depth but I talk about images of Ariella in the ICU. If that’s too much for you I advise you to skip to the last paragraph.

Sleep. Sleep continues to be elusive. Once I fell asleep last night I mostly stayed asleep but it took a very long time for me to fall asleep and I was up early. I have a reel of images running through my head and I can’t turn them off. These images mostly attack at night, though I do get flashbacks of them throughout the day. All images of Ariella in the PICU. Shattering images of her scared eyes when they were prepping to intubate her. Crushing images of her with her sad eyes and miming that she wanted to drink. Devastating images of her writing on her white board “What if I die?” and “I want to die. This is horrible. I might as well be dead.” Asking “am I getting worse?” Heartbreaking images of Ariella on her side when they were cleaning her, in obvious discomfort and a tear dropping from her eye. Distressing images of Ariella practically lifeless in bed, barely opening an eye even when being poked and prodded and moved around. These images do not leave me. I feel such anguish that this is how she spent the last two months of her life, mostly awake and aware. She wasn’t in pain but she was extremely uncomfortable and miserable.

Also very sad to remember are the few positive moments we had in the ICU because at the time, they were positive. Ariella being so excited for a taste of popsicle and Rita’s that she wanted me to tell everyone about it. Ariella being so excited for her tracheostomy surgery because it would mean the tube would be out of her mouth and she would be able to drink and talk. That was another milestone she wanted me to share with everyone because she was so happy about it. When Ariella woke up after her surgery she gave me a big smile when she realized the tube was out. We all thought that was going to be the turning point to get her out of the ICU. We had talked about what Ariella should get following her hospital stay as she deserved something big. And she said, well wrote, “how about new shoes?” All the hell she went through and was going through and she asked for shoes. Broke my heart. The last thing she had looked forward to was finally getting water. She was able to get just 5mL at a time about 3 times a day to start but boy was she happy to get just that. That’s how horrific it all was, that drops of water and tastes of a popsicle could bring that much joy. She had everything all planned out once she got out of the ICU. A big glass of water in the purple cup she won playing bingo, milk, Rita’s, and a shower. And then a big steak dinner when she finally got out of the hospital. None of those dreams were realized. She was on the schedule to have a swallow study completed but it never happened because she took a turn for the worse. After that she never fully recovered. The only comfort I take from this is that she was sedated near the end so no longer uncomfortable and scared.

To contradict myself now, I am glad Ariella was sedated for her sake but I regret not having the death talk with her. When she asked earlier in her stay “what if I die?” everyone thought she would recover and come off the vent, her lungs just needed more time. We did not promise her she wouldn’t die but we did say the doctors were doing everything they could to prevent that. When it became apparent that there was a good chance Ariella wasn’t coming home with us she was mostly sleeping so we never got to talk to her about how she was feeling about dying. By then was she scared to die? Or was she ready to die? What did she think would happen once she died? Where did she think she would go? What, if anything was she worried about? We have talked about death before and what happens after someone dies and Ariella believed in Heaven so I just hope with all my being that by then she was no longer scared to die and was ready to go. Because it kills me to think she might have been scared about dying near the end but didn’t tell us.

I started this post about sleep. This lack of sleep along with the grief is leaving me in what I would call a fog. Concentrating on anything for longer than a few minutes is impossible. I get distracted so easily but usually not by anything, I just end up staring into space. I am extremely forgetful and am having trouble just getting through routine tasks from start to finish. I find myself frequently losing my train of thought when in conversation. I wasn’t going to write today but I know if I don’t have something to do I will fall asleep and I am worried that a nap will make it even harder for me to sleep tonight. But maybe I should take sleep when I can.