It’s here. It’s well underway. February. The month that started it all. It actually started a year prior, in February 2016, with the death of my father. He died on the 25th and was buried on the 29th. I hate that it was such an unusual day. I’ll never be able to look at leap day as anything other than the day I buried my father. February 2017. Diagnosis day. Biopsies. Scans and tests and procedures. Appointment after appointment. Waiting. More waiting. We knew we were dealing with cancer but it took weeks to confirm the actual beast we were facing. Waiting to start treatment, worrying that the cancer cells were rapidly multiplying, taking over while we had to wait to find out what type of cancer, which would determine the treatment. Central line placement, pneumothorax, chest tube. All of this before treatment started, which finally began in March. Did that delay allow those microscopic cells to start taking off through her blood stream, unable to be detected by chemo? Or was it our delay? Brushing off her pain as an injury that would get better with rest? Or was she doomed to succumb no matter when we caught the cancer? February 2018. Fraught with anxiety. Recently off treatment, in between scans. Everything still so fresh in our minds, worrying about relapse. We got lots of congratulations at that time, but I just couldn’t fully celebrate. Because I wasn’t convinced the cancer wouldn’t return. February 2019. Started out so hopeful. Radiation did the job it was supposed to do. Ariella was cleared for bone marrow transplant. More tests and scans. More appointments. And some optimism and hope mixed in. February 11, spent all day at Hopkins for blood work and baseline tests and such. February 18, admitted for what we thought would be 4-6 weeks. Starting the pre-transplant radiation and chemo. Actually managed to have some fun in the hospital. We (thought) we knew what we were in for so were making the best of the situation. February 26, the day we were all waiting for. The day we hoped would cure her for good. The day that set her death in motion. Bone marrow transplant day. What people often call a “re-birthday”. I would give anything, anything to roll back the clock to that day and change things. Not do the transplant. Or do it a week earlier, or a week later. Anything that could possibly change the outcome. Ariella didn’t end up in the ICU until March but February started it all. And it kills me to think about what could have been, had it all gone well like we expected. Why? Why did this happen?
12th Birthday
Twelve years ago today, at 6:00 in the morning, Ariella Paige made her grand entrance into this world. The weather today is actually similar to the weather when we brought her home from the hospital. It was quite hot, too hot even for me to take her for walks in the stroller. Anyway, like everything else she did, she took her time getting here, making her debut a week and a half late. Even taking her time through labor, causing me to end up having a c-section. That day was the happiest of my life. I had always wanted a little girl though I really thought I was having a boy. Ariella filled a part of me that I didn’t know needed to be filled. She completed our family and we were looking forward to a lifetime of happiness. She was perfect and healthy at birth and at that time we never could have imagined the heartbreak to come just less than 12 years later.
Ariella had her whole life ahead of her. She was a precocious child filled with light and exuberance and joy. She wasn’t perfect, not by any means. She was stubborn and had a temper and attitude that could rival any teen. But she was also fiercely independent and a leader among her friends. She didn’t get caught up in drama and was kind to everyone she met. She loved hard, she didn’t hold grudges, and she was generous, compassionate, and sincere. Her spunky and feisty personality is what got her through those two years of hell, never letting cancer stop her.
By her first birthday Ariella was always on the move and began a lifetime of non-stop talking. Her second birthday brought the start of gymnastics, preschool, and the terrible twos. Though we found the year she was three much more challenging than the year she was two. She was stubborn and had quite the temper, which were traits that she carried to the end.
Ariella always loved her birthdays (what child doesn’t). Her love of the fall and animals led to parties on farms and her love of crafts led to painting and crafting parties. But regardless of the theme we always celebrated in some way, as all families do.
Her Pop-Pop’s birthday is the day after Ariella’s and they were always celebrated together with a dinner out.
Ariella’s 9th birthday was the last one before everything went to shit. Her leg pain had started by then but we thought it was just an injury. She was super skinny because she had lost an alarming amount of weight and we were trying to figure that out with her pediatrician. Cancer was never a thought, especially when blood work came back normal. Who could have guessed that less than 4 months later our lives would be completely turned upside-down, not for the last time?
Even with all the hell we had been through we did not imagine after diagnosis that Ariella would have only 2 more birthdays. Her 10th birthday started in the hospital but she was discharged early that morning so she got to have a sleep over with her friends that night.
And finally her 11th birthday. The last one. Even with the relapse we did not imagine she would only have 11 birthdays. She was feeling great most of the time and happy and vibrant. Those who didn’t know her would never have known she was sick. Being true to her fearless self Ariella had an indoor skydiving party.
And then February 26th, 2019. Her bone marrow transplant, often referred to as a re-birthday. Oh how excited and hopeful we were. And I felt it was such a good sign that it was the day after the 3rd anniversary of my father’s death. They had those connections. Their birthdays being 1 day apart, and just having a close relationship. If only. That day is the one birthday of any type I wish we didn’t have. Because that day, the day that was supposed to help her live, is what caused her death.
How? How did she only live 7 months after her 11th birthday? I just don’t understand it. I will never understand it. I still can’t believe this is it. We have to go on without her. We have to wish her happy birthday in Heaven. She should be here. We should get to celebrate 12 with her and every birthday after that. We should be celebrating the last year before her teen years (even though she already had the attitude of a teen). She should be studying for her Bat Mitzvah. I just can’t. I can’t do this. This is impossible. It is unbearable.
This has not gotten any easier. In fact, it seems to keep getting harder and harder. Life continues to go on, the seasons change, and one day continues to turn into the next. There is so much growth and activity surrounding me and yet I feel stagnant, rooted to May 9, 2019 at 4:21 PM when Ariella took her last breath. Because that moment is when I too died. I am not the same person, will never be the same person. All the best parts of me died along with Ariella that day.
This year, instead of a noisy sleepover at our house we celebrated Ariella’s birthday without her, where she would have wanted to be, at Build-a-Bear to build bears to make other children feel better. Instead of taking her out to one of her favorite places for dinner we are gathering at the cemetery, sending her messages that we dream about telling her in person. Instead of her getting upset with us for singing Happy Birthday to her (she hated that and actually had a meltdown over it at one of her parties) we can only hope that she hears us singing to her from Heaven. I still get to celebrate my Dad and Ariella together, but this time it’s at their grave sites. It is all wrong. So very wrong. Two of my favorite people have died. The most important person in my life died. I don’t want to live without her. I don’t want to do this anymore.
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.
Chaos Theory
I’m sure everyone is familiar with Chaos Theory. That one very small change early on can cause a much larger difference in a later state. I often wonder how this plays into Ariella’s illness and death. If we had caught the cancer sooner, when she first complained of leg pain, would this have changed her outcome at all? Would she have responded better to the chemo? Would she still have relapsed or would have starting treatment earlier changed that? Her scans that showed the relapse were done on a Friday. If we didn’t have the scans until the following week would that have changed anything? Treatment would have started a bit later getting meaning her bone marrow transplant would have been a bit later. Would that have changed the ultimate outcome? Maybe she wouldn’t have been exposed to the flu. Maybe she wouldn’t have gotten so many infections. Maybe, maybe, maybe.
We of course will never know if the outcome would be different. But these “what ifs” torture me. They frequently pervade my thoughts. I replay all the various scenarios over and over. If only we had done this, or if this one thing didn’t happen then maybe the rest of it wouldn’t have. It seemed like we were in the midst of this perfect storm where Ariella was getting bombarded with every possible infection and complication. What if just one variable had changed? What if just one thing had been done differently? Would we still be here without our daughter?
People are going to say to stop doing this to myself. It was nothing we did or didn’t do and tormenting myself about it won’t change anything. Logically I get that. Running these thoughts through my brain over and over does not serve any purpose. And yet I cannot stop. Because the thing is, Ariella dying never once crossed our minds when we were considering bone marrow transplant. I fully believe that one small change initially would have altered the outcome drastically. Whether it was the timing of transplant, administering of different meds sooner, a different doctor on duty earlier on in the ICU stay, etc. And this only contributes to my anguish. Because her death, at least following transplant, did not have to happen. And I will never come to terms with it.
If only we could turn back time. I’m actually not sure where I would turn it back to. Maybe to when she very first started complaining of leg pain. If we caught the cancer sooner maybe she wouldn’t have had any of those micrometastatic cells that didn’t respond to chemo. I’m not sure I would turn it back to when she relapsed. I don’t know that we would do anything different except maybe start alternative treatments sooner. I would turn it back to BMT and not do it. But once again, who knows what effects those changes would have on the greater outcome? I am sure that if we could go back and not do the transplant Ariella would still be with us. I can’t say for how long but could have been a lifetime.
Not only am I facing a lifetime without my daughter, without the person that completed me, but I am also facing a lifetime of questioning every decision that was made. If only, if only, if only.
Trust
Ariella trusted us. From the time of diagnosis she trusted that we were making decisions based on her best interest. She dreaded chemo, dreaded radiation, dreaded all of it but she never really argued about it because she trusted us when we said it was what she needed to do to get rid of the cancer. We never kept things from her. When she was getting ready for her limb salvage surgery she knew it was a possibility she would wake up with part of her right leg amputated. But still she trusted us that the surgery was the right decision. We never promised her she would be cured. But we always said the doctors were doing everything they could. When treatment was working we shared that and when it wasn’t we shared that as well. She never lost hope because there were always other options. I remember one day getting scan news that wasn’t what we wanted. When I picked her up from school and told her about it and told her treatment would be changing she said “that’s okay, at least I still have options.”
When it came time for the bone marrow transplant Ariella was understandably scared. She knew about the radiation prior and the high dose chemo that would once again make her feel lousy. But once again she trusted us when we told her she would get through it just like she got through all her other treatment and it was her best chance to get rid of the cancer once and for all. And she went into the hospital with a positive attitude. Up until she started feeling the affects of the chemo she was dancing and singing with friends, playing games, roaming the hospital, and playing pranks. She was no longer scared. She trusted us and the doctors that all would be okay.
This is one of the images that plagues me. Ariella so hopeful and optimistic in the hospital, acting like she didn’t have a care in the world. Ariella receiving the bone marrow without complaint. Ariella and I watching TV and hanging out in her hospital room just talking and cuddling in bed together. Getting texts from Ariella when I wasn’t there. All that time just waiting until her blood counts came up so she could get out of there and get on with her life. She trusted me when I talked about all the things we would do once she had clearance from the doctor. She had no doubt at that point that everything was going well and it was just a matter of time before she would be sprung from Hopkins.
I guess this goes along with my regret and guilt. Ariella trusted us that the bone marrow transplant was the right thing to do and yet it ended up being the cause of her death. We let her down. We made the wrong choice. Yes I know hindsight is 20/20 and we made the best choice we could have with the information we had at the time but that still doesn’t change the fact that the two people who are supposed to keep her safe failed to do so by authorizing a treatment that has known severe complications. I see her happy and okay one minute and then everything changed in the next when she was intubated and scared she was going to die and always had sad eyes. And we couldn’t effectively comfort her. We couldn’t keep her safe and we couldn’t make her feel better.
Along with a lifetime ahead of missing Ariella and missing the memories we will never get to have, I have a lifetime ahead of having to live with those images of Ariella with sad eyes in the ICU, wondering how it all went so very wrong. She thought she would be fine, she’d get through BMT and have a lifetime of fun and friends and dancing ahead of her. At some point in the ICU she realized that was not the case and she might not be okay, even though we told her she would be. I made it a point to never lie to her about her illness but I didn’t think I was lying when I told her she would come through BMT just fine. I never thought death was a possibility. I just hope she never blamed David or me during that time. I know I blame myself enough. If only, if only, if only.