Tag: hospital

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Memories

This time of year, from March through May, I am flooded with memories. Memories that are in direct contradiction to each other, memories that have completely different emotions to them. Back in March 2017 Ariella had just begun her treatment. Our days were awful, our lives put on hold. We were scared and sad and feeling helpless. And we had so much hope. Less than a year and she would beat this thing. We could get through a year and then we would be back to normal. Her prognosis was good. In between hospital visits, when Ariella was in between treatments, those brief periods when she was feeling well, we could live our lives. We had a lot of fun. We even had fun times in the hospital. We had some terrible, terrible times in those early days, especially just trying to figure out this new life, adjusting to our new normal but I never felt completely defeated. Honestly I followed Ariella’s lead. I can’t say she never complained but she mostly had a great attitude. She never doubted she would get better and she cared more about comforting other children. And I would do anything to go back there. For better or worse those hospital rooms were our second home. We knew the doctors, nurses, child life staff and volunteers. We got to know other families. We decorated the rooms and brought comforts from home. Even when times were better, when Ariella finished her treatment, I missed those days. We had fun but there was also a sense of safety. While Ariella was there, we were fighting the cancer, keeping it at bay. Once we were out of those rooms we were doing nothing to stop it from coming back.

In March 2019 everything had changed. The promise of a cure from a bone marrow transplant quickly vanished when Ariella had to be admitted to the ICU, and then a week later was intubated. Of course we still held onto hope because without hope, you just can’t continue living. But I knew, I just knew if she was intubated she was not going to come off life support. I tried not to despair. We had some steps forward. But ultimately with each step forward there were larger steps backwards. As the weeks went on I lost more and more hope and began to fear more and more that we would lose her. Days and nights were spent staring at her vitals, listening to the beeps. We were terrified and exhausted and completely helpless. Ariella would have a great day here or there which inevitably would be followed by another setback. There was nothing fun about those days, just constant vigilance. I do not look back at those days with any sort of fondness. Even when Ariella’s room was overflowing her last day, visitors spilling out into the hallway, waiting to say their goodbyes. I’m glad people got to say their goodbyes. But following those moments I have to remember the machine being turned down, step-by-step until it was no longer keeping her alive, hearing Ariella take her last breaths, and feeling her leave us.

With the calendar having turned over to May I’m not filled with the sense of renewal that the promise of spring and warmer weather often brings, but instead filled with dread about facing the anniversary of the day Ariella died. Remembering those awful days leading us to making that impossible decision. Leaving the hospital without our girl after spending over 2 1/2 months there just hoping we would be leaving as a family, only coming back for check-ups. We went into the hospital on February 19, 2019, one week before her transplant, filled with hope and excitement, ready to celebrate her re-birthday. We left the hospital May 9, 2019 as a broken family of two with a hole that can never be filled.

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Remembrance

David and I went to a remembrance ceremony last night. It was at the hospital where Ariella had most of her treatment. You may be wondering how I could go to the hospital after my last post. I have actually been to the hospital a couple of times since Ariella died (before visiting the person the other day) to give out bears and it was okay. I’m not sure why the difference but it was being in the hospital room that was the trigger for me. This ceremony was held in a different building from the main hospital. We had been in this room before, for a party, but it wasn’t the same trigger as being in the cold, sterile, clinical, hospital room.

The ceremony was to honor children who have died, who were treated at that hospital. Doctors, nurses, social workers, and child life were all there along with all the families that chose to attend. Seeing the doctors and nurses who cared for Ariella made me long for the days when Ariella was in the clinic pulling her pranks. The days that seemed so long and so difficult were actually a breeze compared to life now. I realize now the things I worried about even then just didn’t matter. Ariella missing school, not finishing assignments, missing tests. None of it mattered in the end. Even at the time I knew it though, actually. When you have a child with cancer it’s always in the back of your mind that they might die. What does school matter if she doesn’t survive in the end? But that was one of the things we had some control over. We could make sure she attended when possible and made up missed work. Being in school gave her the semblance of a normal life and allowed her to be with her friends. So really it did matter, but not in the way of grades and whatnot. And if we didn’t worry about those things it would have felt like we were losing hope. And we never lost hope. Not until the bitter end.

The ceremony was nice. There were different readings and they read the names of children who died, whether the families were present or not. We were given stones to put in a bowl when our child’s name was read, and to honor any other child we knew as well. So many names. So many. Too many. One is too many. And these doctors and nurses and social workers and child life were up and down putting stones in the bowl for all of their patients. I don’t know how they do it. They choose it. They choose to work in a profession where they will experience a lot of tragic loss. They get to know these kids, for years in some cases, love these kids, do whatever they can for them, and then make it a point to remember them after they have died. They are very often the bearers of bad news and have to look in parents’ eyes and tell them there is nothing more that can be done. They are in the profession because they want to help and in the process they experience a whole lot of hurt. I don’t think I could choose a job where kids I get to know and love often die.

It wasn’t right to be among the hospital staff without Ariella there. This is not how it’s supposed to be. None of this is right. Everything is surreal. Nothing is as it should be and never will be again. There was some comfort to be had to be surrounded by others in similar circumstances even though I didn’t really talk to others. It just wasn’t in me last night to share stories. But I do feel less lonely when among people understand. And there is hope there too. Because as we were sitting in our seats waiting to start there was a lot of chatter going on with a good bit of laughter. Normal conversation. Like things were almost okay.

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Triggers Everywhere

Beeping. Flashing numbers. Pulse Ox. Alarms. Scrubs. Hospital bed. Dinner tray. Pink pitcher. IV bags. Things I never wanted to see or hear again. Things that immediately bring me back. To inpatient treatment when we were hopeful. The the ICU when Ariella lay dying, hooked to a machine keeping her alive, but not well enough.

The sights, sounds, and smells of the hospital should be easy to avoid. Until you have to visit someone in the hospital. Which I did. Seeing the numbers flash on the monitor brought me to our days in the ICU, staring at that screen for hours, willing the numbers to change in the right direction. The IV pole. When Ariella was feeling good she used to love to ride on the IV pole through the hallway. We spent much of 2017 in the hospital and I actually have many fond memories of that time. Because despite everything there were times she had fun, times she enjoyed. Fun visits with friends. Decorating her room. Playing games. It wasn’t all bad. In fact there were many smiles and much laughter through many of our hospital stays. Sitting in the hospital room the other day all I wanted to do was escape. Because it reminds of the fond times we had and I miss them. Because it reminds me of the horrific end of her life. Because if I’m going to be in a hospital I want it to be with Ariella.

There are the fond memories and then there are the memories of the ICU. And it’s traumatic sitting in a hospital room being reminded of Ariella with tubes coming out of everywhere, hooked up to an obscene number of machines and pumps, and not being able to be saved. I never want to see the inside of a hospital room again. I know that’s not feasible. Shit happens. Triggers can’t always be avoided.

Speaking of triggers, I wish there was a place to go from October to January, where there are no signs of holidays. No pumpkins, no turkeys, not a single strand of lights. I don’t know how I’m going to survive the next couple of months. The commercials, the decorations. The people who love the holidays, every second of them. The people who hate the holidays, because of the stress. Both make me angry. Those who love them because I used to love the holidays too. Thanksgiving was always my favorite and I just used to love the festiveness from Halloween through New Year’s. Now there’s nothing to love about this season. Ariella isn’t here to help me set the table for Thanksgiving and write the menu on her dry erase board. Her menorah will be left unlit this Chanukah. No one to anticipate the gift she will get each of the 8 nights. She was so grateful for all her gifts, no matter how small. No one to try to stay up with until midnight on New Year’s eve. Every wreath, every roll of gift wrap is a slap in the face. A reminder of what I am missing, of who I am missing. Seeing everyone happy and excited about the holidays just makes me long even more for what I can’t have. Those ranting about the stress of the holidays also make me angry. Because they should be grateful they have their families to celebrate with. Now I know many might also be dreading the holidays for the same or similar reasons as me. But those are not the people I am referring to. I am referring to those that only see the work, the stress in a holiday, taking for granted that they have a family to share it with. Holidays don’t need to be stressful. They should be about family and friends and spending time together. That makes a perfect holiday. The rest doesn’t matter. So it pisses me off when people complain about the trivial stuff that just isn’t important.

I don’t want to be in the world. This world is so fucking painful. It’s been almost 6 months without my girl and I am absolutely dreading the next couple of months. And then it will be February, the month my dad died, the month Ariella was officially diagnosed, the month that started the end of it all. The triggers, reminders, dates are never ending and I have years and years and years left of yearning, of anguish, of heartache. I just want it all to be over.

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Iced Chai Latte

I can’t. I just can’t anymore. I just wanted a fucking iced chai latte and that was too hard. Trying not to cry all day long but every fucking thing is a reminder. Drove someone to an appointment at the hospital where Ariella was born. The best day of my life. Never in a million years would I have imagined that less than 12 years from that day she would no longer be here. She was perfect and healthy at birth, even though she was born by c-section. She was rarely sick and I couldn’t imagine that I would only get to be a mom for 11 1/2 years. And don’t tell me I will always be her mom. It’s not the fucking same. I don’t get to see her grow up. I don’t get to teach her to drive. I don’t get to hear about boys and take her shopping for a prom dress. I don’t get to send her off to college and help her plan a wedding. I don’t get to brush her hair and tuck her in at night. I don’t get to hug and kiss her. I don’t get to cook her dinner, pack her lunches, share sushi with her, watch her dance. I don’t get to read to her, read the stories she wrote, receive the cards she always made. I don’t get to help her with her homework, take her to musicals, take her on vacation. I don’t get to see how she would have turned out. I don’t get to see the amazing adult she would have become. I don’t get to continue the amazing mother-daughter relationship we had. I don’t get to have grandchildren. I don’t get to just be with her, every day. I lost everything. I am missing out on everything. And I feel guilty about it because I should be sad for her, for her life being cut so short but I am sad for me, for all I’ve lost and all I will never have. And yet I am wasting this life I have. Maybe I should try to enjoy life, go on living because she can’t. It seems wrong to not “live” when all she wanted to do was live. But it also seems wrong to live when she can’t. When she deserved it. Why should I get to live when she can’t?

The second appointment of the day was at an imaging center. The same center where Ariella had her follow up x-rays. I will never forget the anxiety walking into that place. My heart pounding, adrenaline pumping. Literally shaking. And that feeling would linger until we got the results. It was an x-ray done at this place that showed her relapse. While waiting there I tried to distract myself. I read and watched a show on my phone. But my thoughts always went back to all the times I was there with Ariella. And the tears would start.

It had been an especially rough few days. I just wanted my iced chai before heading home after a long day. In the parking lot. A Baltimore Symphony Orchestra bumper sticker. Reminded me of watching the BSO perform Peter and the Wolf at Hopkins when Ariella was there for her BMT. She was feeling so good. I just don’t understand what fucking happened. And I just want to go back and change the variable that made everything go to shit. Remembering the good times, remembering the bad, makes no difference. It all leads to my child dying. Sometimes remembering the good is harder because it only reminds me that this never should have happened. Cancer didn’t kill her. It was a perfect fucking storm of everything that could go wrong with the treatment. So the good times, even in the hospital because there were some, just serve to show how naive our optimism was. How we should never have done the transplant. Because that transplant took the life of the girl in the hospital who was just days prior dancing in the hallways, silly stringing her teacher in her hospital room and pranking her nurse with a scary clown mask. She wasn’t sick. She didn’t look sick. She didn’t act sick. But still she died. It’s not fucking fair.

All of that from a bumper sticker. But I wanted my chai and after navigating probably the world’s most awful parking lot I couldn’t leave empty handed. So I composed myself and went in to get my drink . But right there in front of me in line, a girl about Ariella’s age, with her mother. They were joking with each other. Laughing. Ariella could always make me laugh. Even when I was angry with her. Sometimes I had to hide my laughing because she did or said something she shouldn’t have that I found funny. Sometimes her tantrums (and yes, even at 11 she had tantrums, she wasn’t perfect) were so over the top I couldn’t help but laugh, even though that set her off even more. But she was funny and silly. She made weird and funny faces. A few days after she had her trach placed I was having her make funny faces with me. She made up songs that made no sense and if you told her she was weird she said “thank you.” I miss laughing with her. I miss the sound of her laughter. It was contagious. I have laughed since Ariella died but it doesn’t sound the same to me and it doesn’t feel the same. Many times I’m laughing at something I wish I could share with Ariella because she would also find it funny. My laughter feels hollow now. It’s tinged with sadness. It’s not as loud, not as strong, fades as quickly as it started.

I made it through the line though my eyes were tearing up. While waiting for my drink I decided to check my phone. I wanted to check in on the writing group I’m doing which is on Facebook. I opened the app and had some notifications and I made the mistake of looking at them. One was a beautiful post by the mom of another girl with Ewing’s sharing Ariella’s page and website. I loved that she shared it but I wasn’t expecting to see it and it made me cry. Another had shared a picture of Ariella and her cousins 3 years ago, before it all went to hell. And at the top of my newsfeed was a post with pictures of the Dancers Against Cancers hope stories who are now angels. Just one year ago we were in LA with Dancers Against Cancer (fabulous organization by the way, check them out) for the Industry Dance Awards. Ariella met and bonded with other hope stories and was reunited with friends met that previous April. I never dreamed just a year later she would be there again, but this time in a remembrance video.

I make it home, finally. To this.

Just one more in your face reminder. Fuck you Amazon. Kind of ironic though because Amazon has been my lifesaver. If I need something but am not up for going somewhere, I don’t have to. And you can see from this post why I don’t want to go anywhere.

I just can’t do it. I can’t go on without her. We had so many plans. So many things we wanted to do. It’s not fair that I get to go on living when she doesn’t. I don’t want to go on living. Why couldn’t it have been me? She had her whole life to live. She had so much good to do in the world. She was only just getting started.

There is nothing good that will come from this. There is no lesson to be learned from my grief. Anything I may have needed to learn or do did not require my child to die. At the end of each day I feel like “Yay, I made it.” But for what? What am I making it for? I just have to wake up and do it again. Day after day after day. Just going through the motions. Not enjoying it. Suffering from pain and heartache most of the day. Who wants to live a life in pain and yearning for the one person you can’t have? It just seems so daunting, so hopeless. I don’t know how to continue.

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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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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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Regrets

There’s not a whole lot in my life that I regret.  Even before Ariella was diagnosed with cancer we tried to live life to the fullest.  We spent time together, went on vacations, played games, imaginary play (so much imaginary play which I did not enjoy but would give anything to have her begging to play with me now).  Sure we were busy and had to do the regular day to day stuff but family and home always came before work for both David and me.  So I can’t say that I regret not spending more time together or saying I love you more or giving hugs, or things like that because I always did.  I have always known life can change in an instant from losing friends in high school and college and somewhat unexpectedly losing my dad (he had heart issues but I certainly didn’t expect him to die when he did).  I never wanted to be the person who regretted missing time spent with loved ones.  And I wanted to spend as much time with my girl as she would allow.  I always used to joke with her that one day she wouldn’t want me always around, that she would get annoyed with all the hugs and kisses and not want to sit on my lap.  She always disagreed, saying she would always want hugs and cuddles and to hold my hand, and it was true, even at 11 she often held my hand when we were out, she loved to cuddle together in bed, and had not reached the phase where she didn’t want to be seen with her parents.  We certainly saw the pre-teen attitude and eye rolls but mostly Ariella liked having us around.

Once she was diagnosed of course we saw things differently.  We always thought she would beat it but of course the thought was always there, what if she doesn’t survive?  So we did even more. Gave her as many experiences as we could.  Said yes to all the opportunities that came our way.  We did not put her in a “bubble” in between rounds of chemo and instead let her go to the dance studio, have sleepovers, go to Build-a-Bear of course, and do all the things a 9, 10, 11 year old should do.

So no regrets with how we lived our lives and spent our time before and after cancer.  But I do have a couple regrets and they are big ones.  I regret not trying to cuddle more with Ariella when she was in the ICU.  It was pretty challenging because of the vent and tubes and they said I could not lie in bed with her (I regret not fighting that too) but we both were aching to give each other hugs and just couldn’t.  I regret not trying harder to give her physical comfort.  I regret not trying harder to wake  her to hear me when she was so sleepy but not yet under actual sedation so she could hear me tell her I love her and goodbye every time I left the room, especially to go home.

But the biggest regret, and I know I am going to get all sorts of arguments and comments about this, is choosing to do the bone marrow transplant.  It was not guarantee of a cure, it is not standard treatment in sarcomas (it was a trial), and she was currently no evidence of active disease and having a good quality of life.  Of course we don’t know if the meds she was on would have kept the cancer at bay but I am certain she would have lived longer and would have had a better quality of life.  If she did decline due to cancer we would have actually been able to tell her goodbye, she could have told us her goodbyes, we could have gotten more hugs and kisses. She could have been made comfortable but maybe not as scared. Instead she had 2 of the crappiest months a child could have, only being able to communicate by writing, not being able to eat or drink, being uncomfortable with complication after complication, not being able to say goodbyes or know or be aware of the love that was surrounding her at the end.  She was scared she was going to die.  We never promised her she wouldn’t.  But we redirected and instead just tried to reassure her that that the doctors were doing everything they could. While of course we were worried about the same thing. Cancer is traumatic.  A dying child is traumatic.  But there is so much more trauma with the way that Ariella died than I can ever put into words and I will never not regret doing the BMT and nothing anyone says will change my mind.  The 3 of us walked into Hopkins together hopefully optimistic that the BMT would keep the cancer from coming back.  But only 2 of us walked out.  Wasn’t worth it.  It’s this, this is what plagues me a good amount of the time.  The actual medical and emotional trauma Ariella went through and that we went trough watching it. The not only not being able to help or comfort your child but feel like you’re the reason she’s in the pain and discomfort. I know we made the best decisions we could at the time given the information we had and we thought we were acting in the best interest of Ariella and everything else everyone is going to say about blaming ourselves.  Intellectually I know it.  But the regret will always be there.

As I said at the start, I don’t have a lot of regrets.  But I can’t let go of the one I do have.  And I’m sure I never will.