Author: stein28

Dear Ariella,

Another milestone birthday. Your Sweet 16. But there is nothing sweet about this 16th birthday. This is your 5th birthday since you died. And these days never get easier. Actually, it’s the days leading up to the milestone days that are so hard for me to get through. They are fraught with anxiety, panic, dread, and sadness. I can feel it physically, in the pit in my stomach, in the way that my heart pounds, in the shallowness of my breaths. These days should be filled with your anticipation and excitement, looking forward to the freedom of being able to drive. I should be worrying about you behind the wheel of a car, not visiting your gravesite. I should be hanging on for dear life annoying you while I press my imaginary break as you drive me around because I know you would be a speed demon. You my fearless child who loved to go fast (except when we needed you to do something, then I never met anyone slower) would probably be terrifying as a driver. I should be showering you with gifts, not decorating your tree at the cemetery. And it saddens me that I don’t know what you would want for your 16th birthday. Well, other than a car. I do know you would have wanted some kind of convertible.

How would we celebrate this big day? Dinner out of course at a favorite place. Would you want steak? Or your favorite taco salad and churros? Or something completely different? But you definitely would do something with your friends. Your friends were your world. What else would we do? It pains me that I just don’t know. I don’t know who you would be anymore and it just keeps getting harder to imagine your life now. I do know that you would still be your sassy, goofy, spunky, kind, smartass, self and I wouldn’t have that any other way.

Your birthdays were always extra special because we celebrated with Pop-Pop, whose birthday is the day after yours. Did I ever tell you that when I was in labor Pop-Pop actually said to hold on until the next day so you would be born on his birthday? He was joking of course (I think). This after you were already 10 days late. You always did do things on your own time, never in a rush. In fact, as mentioned above, I think you are the slowest person I have ever known. Anyway, your last birthday with Pop-Pop was in 2015, though of course we didn’t know that then. Just 4 months later he died and we were definitely missing him on your 9th birthday.

Your 9th birthday was your last normal, birthday. We missed Pop-Pop but unbelievably it was going to get worse. Our world was about to implode. On your last normal birthday you got a phone call from Mickey Mouse (or maybe it was Goofy) telling you that you would be going on a Disney Cruise and trip to Disney in April. That trip never happened. Little did we know that your hurt leg was more than just a dance injury. That it was cancer cells, mutating and growing, about to change our lives forever. Little did we know how much our lives would change. Never could we have imagined that you would live through only 2 more birthdays and that you would be fighting for your life for both of them.

I am glad you got the opportunity to experience what it feels like to fly on your 11th, your last birthday. The freedom, the weightlessness, a few minutes away from the cancer and illness and fear. There is no feeling quite like it. I wish that I could fly, leave this earth, and join you where there is no more sadness, pain, fear, and illness.

What do I want you to know on this milestone day, this 5th birthday without you? I’m actually in a better place now. Here is the post I wrote on your 12th birthday, the first one we had to spend without you: 12th Birthday. I’m sharing it here because it shows my survival. It shows how far I’ve come out of that very dark place I was in (and it’s a nice celebration of all your birthdays). I’m not healed. I never will be healed. And I’m still sad of course. Sadness will always be a part of me. Your absence is ever present and there is never a moment when I’m not thinking about you and missing you. But I’m learning how to carry that pain with me in a way that is no longer oppressive. I’m learning to live again, not merely survive. I know you want me to be happy, that you’re probably relieved that I am finding joy again. But you always understood that it was okay to be sad and scared and worried and it was okay to express those feelings. In fact you often expressed those feelings, and quite loudly I might add. You were never taught to hide them and put on a happy face for the sake of others and you wouldn’t want me to do that either. You would want me to be happy, but in my own time, and for me, not for anyone else. And I am getting there.

That’s not to say that I’m not still hurting. I hurt for me and for Daddy and all your family and friends that miss you greatly. I hurt for all those who never experienced the joy of knowing you. I hurt for you and all that you missed and will continue to miss. You were looking forward to so much that you will never get to experience. And when I think of all those events, not just the big milestones but also the smaller, mundane moments that make a life, I miss you that much more. I’m learning to live with “and” rather than “or”. I can be sad that you are gone and sad for all you went through AND I can experience joyful moments in my life. I can be angry that cancer stole you from us AND I can be grateful for the time we had together. I can cry for our loss AND I can smile and laugh at all the beautiful memories that we had. I’m reminded of these lyrics from the song “Beautiful Anyway” by Judah & The Lion: “That’s what makes this life so wonderfully awesome And horribly awful Yet somehow it’s beautiful anyway”.

Even though I look for signs from you everywhere, I’m still uncertain as to what I believe happens when you die. One thing I am certain of is that if you are still alive in spirit somewhere, you are with Pop-Pop celebrating both birthdays together. I’m sure you’re also with your friends (too many friends there with you now), probably planning some epic pranks. Please don’t forget to throw some signs our way amongst your partying.

I love you kiddo, to the moon and back, infinity times. Words truly cannot capture how I feel without you. Just know that I love you always, will miss you forever, and look forward to the day we can be together again.

Love,

Mommy

The morning of May 9 we had a scheduled meeting with Ariella’s team for late morning. However after they rounded they decided we should meet earlier. That didn’t bode well. I called David and he came to the hospital immediately and we teamed not long after he arrived.

In a nutshell, Ariella’s lungs were not improving and her kidneys were failing. Should she recover we were looking at dialysis. It wasn’t something that was reversible. After hearing from all the doctors and specialists we learned there wasn’t any more that could be done to save Ariella. That morning, we made an impossible decision, one no parent should ever have to make, to turn off the life support and say goodbye to our daughter. With tears streaming down my face I asked if we could bring her home with us. I did not want her last moments to be in that hospital. She had suffered greatly, the last two months of her life were horrific and I wanted her surrounded by her comforts, in her own bed. But they told me that wouldn’t be possible.

We let family and friends know that if they wanted to say goodbye, now was the time. Her room was overflowing with people, spilling out into the hallways of the PICU. I will always wonder if Ariella was aware, if she felt the love from everyone in that room, if she heard us talking to her, if she felt us holding her. One of her best friends laid in bed with her, hugging her, talking to her. How? How does an 11-year-old say goodbye to her best friend? I hope that if she was aware, that she was ready to go because I can’t bear the thought of her knowing she was going to die without being ready. There we were, surrounded by people, and I never felt so alone. People kept hugging me and putting arms around me and I wanted them to stop. I didn’t want to be touched or comforted. I wanted to run from the room screaming, I wanted to throw everyone out, I wanted to find a dark corner and just hide. But mostly I just wanted it to be me leaving this world, instead of Ariella. I would have done anything to trade places with her.

Around 3:30 that afternoon we asked everyone but Ariella’s doctors to leave the room. It was time. It was gray and rainy outside. We put on some music for Ariella and with me laying in bed with Ariella and David on the other side holding her hand, the respiratory therapist started gradually lowering the settings on the vent. Each press of a button further severing Ariella’s connection to life. Until the very machine that kept Ariella alive was turned off. And that’s when I prayed. I prayed so hard for that miracle. This couldn’t be it. She could not be gone. I was clinging to those last tiny little shards of hope that she would take a breath on her own, and another, and another. That she didn’t really need the machine. That the machine was hurting, not helping. But as we all know we did not get our miracle. In those final moments “Fight Song” began playing. For those that don’t know that was Ariella’s anthem throughout her treatment and we even have a recording of her singing it (which we played at her funeral). At 4:21 PM on Thursday, May 9, 2019, Ariella was pronounced dead (It took me a very long time to type that sentence. When I finally did it was 11:11, a sign?). The song “Better When I’m Dancing” was next to play (Ariella’s tap dance) and the sun broke through the clouds. She was gone. When the funeral home came to get her, we did an honor walk through the PICU with all the doctors and nurses lining the hallway as we walked with her. When we could go with Ariella no further I collapsed to the floor. I did not want them to take her away from me. I wanted to go with her. This could not be happening.

Somehow we packed up her room (I wanted to leave everything behind) and after 81 days in the hospital, 57 of those in the PICU, and 50 of those days attached to a ventilator, David and I walked out of that hospital for the last time as a shattered family of two.

I’m not going to share much about the early days and weeks immediately following her death. About 6 weeks after she died I started my blog so you can read about that time starting from here: Here I Am I will say that I didn’t sleep, even with medication. I could not shut off my mind. I was plagued by those horrific images from Ariella in the ICU; her panicked face, her asking (by writing) what if I die and am I getting worse, just how battered she looked, how unlike herself. Those days were being relived through a constant loop that I could not shut off. Though not as frequent I still am haunted by those images and it’s like I’m back in that hospital room all over again. We never could have imagined this was how it would all turn out and I would give anything for a do-over. I try to live without regrets and we made decisions based on the information we had but I 100% regret the bone marrow transplant (you can read about that here: Regrets ). The choices we made caused Ariella medical and emotional trauma. She had the scariest, crappiest, most agonizing months a person could have and we couldn’t make it better for her. This is something I have to live with for the rest of my life.*

*Please do not comment on my regrets. Please don’t say things like we did what we thought was best and such. Please don’t say it wasn’t our fault. Intellectual I know this. But I feel what I feel. And all the clichés and trite comments in the world cannot change that.

If you made it this far, thank you for reading. And for those that shared, thank you for that as well. And especially thanks to all of those who personally reached out to me throughout the telling of Ariella’s story. Knowing how it was impacting others is why I continued to write even though it was hurting me. I am emotionally and physically drained and other than sharing childhood cancer facts in my stories for the rest of the month, I am taking a break from advocating and from this cancer world. There was nothing therapeutic about this, nothing healing but maybe, just maybe it will bring more awareness to the reality of childhood cancer and inspire more action. I know it was not easy to read and that was the point.

Has this been hard to read? Made you uncomfortable? Made you sad? I can assure you it has been next to impossible to relive. Even just rereading what I wrote back in 2018 has been hard but writing these final parts has really taken its toll. I’ve hidden from everyone how much it has affected me because I just haven’t wanted to talk about it. Writing usually is therapeutic for me but this has been grueling and these past few weeks have been quite challenging. I had a couple panic attacks, I’ve cried long and hard in my car most days, I’ve cried at my desk at work (which is awkward when sharing a space with 2 other people), I haven’t been sleeping well and haven’t been eating much. Yet I continued to write Ariella’s story because her story needs to be told. There are countless children like this. An unfathomable number of stories that must be shared. They deserve a voice. They deserved so much more.

May 2, 2019: With so much other stuff happening David and I practically forgot about the cancer, the thing that put us there in the first place. In the beginning of May she had a planned 60-day post BMT CT scan which showed no signs of cancer. But who the fuck cared at that point? Yay to no cancer I guess, but at what cost? That hell that Ariella endured, that all of us endured, that we were continuing to endure, WAS. NOT. WORTH. IT. We still had hopes that she would pull through but we also knew if she did she was looking at a very long road to recovery. And would she ever fully recover? What kind of quality of life would she have? These were all things we were thinking about. Meanwhile when we met with her team at that time we were told we were looking at at least 6-8 more weeks.

May 5-6, 2019: Things got really scary. Ariella had a decent couple of days but once again she went downhill. They decided to sedate and paralyze her to allow the vent to do the work for her to give her lungs more time to heal. That night was a very long night. The carbon dioxide levels in her blood were much higher than they should be. Vent settings were adjusted all night long and they even tried the oscillator ventilator (which, well, I will never forget the sound of that machine), but ultimately went back to the original vent. By morning they got her fairly stable but who knew if her lungs were irreparably damaged? And once again her kidneys were failing. It had been 2 months since we heard Ariella’s voice or were able to give her a hug. It was impossible to imagine that would have been the last time and yet it was all I thought about.

The next few days were pretty much the same.

I had intended to finish her story today but I can’t just yet. I desperately want to write a different ending.

We made it to April. Almost a month in the PICU. At this point I stopped documenting regularly. We were exhausted, we were scared, we were frustrated, and we just wanted our girl back. Anyone who has spent anytime in a hospital knows you don’t get any rest. And David or I were always there. We took turns staying over but many nights we both stayed if we felt like things were not going well. We got no sleep. We barely ate. The conditions in the PICU were terrible. People didn’t clean up after themselves. Bathrooms and kitchen were dirty and you couldn’t even get coffee without leaving the floor as the keurig was broken. We were basically living there and it was just more shit we had to deal with. We were all hanging on by a thread. There was no privacy, doctors and other team members constantly in the room, no where to go to be alone but still be nearby. And in the ICU you hear everyone’s grief and fear. You hear the cries, the wailing, the devastation. It’s too much. Simply too much.

Ariella’s spirts continued to drop. She was a shell of the spunky, sassy, goofy girl that first entered the hospital. She literally asked by writing “what if I die?” and all I could think of was that I would never hear her voice again or properly hug her. Ariella also communicated by typing notes on her notes app. I still have them. I won’t share them word for word. They are excruciating to read. But here is the gist. She was again begging for water or milk, begging to get out of the PICU, asking for dates when she could drink, saying they keep lying to her. She said she wanted to give up. They better have a date for her when she could have a drink or she would really give up. She said she felt pointless. She said she wanted to be sedated, that she didn’t see a point anymore. She said she didn’t want to live anymore. That it was pointless and too hard. That she gives up, that “it’s not like anything is doing anything for me right now anyways. It could be weeks before I drink something now.”

Things just kept getting worse. Ariella’s anxiety was out of control. She had some delirium from meds and just being in the ICU. She would pull at her tubes and was confused a lot of the time. She kept getting infections but lines had to be removed and replaced and new lines added. They were running out of veins in which to put lines. She had them in both arms and both legs. They had to use ultrasound to place new lines. They still couldn’t wean the amount of pressure (PEEP: positive end-expiratory pressure) she was on to keep her airways open. And things went from bad to worse. One day we noticed her sats were terrible and all day we said it didn’t seem right. It was a lot worse. Well finally someone listened to us, took a chest x-ray, and saw that she had yet another pneumothorax requiring another chest tube. I was livid that it took that long for someone to listen and take care of the problem. We also felt we weren’t being listened to with some other issues as well. I blew up and I think I almost made a resident cry. It was very, very bad. We were all falling apart.

Every tiny bit of hope and improvement was followed by a giant setback. They had been planning to try remove the vent and either get her back on bipap or do a tracheostomy. But then her hemoglobin dropped significantly so they were concerned there was an active bleed. There ended up not being a bleed in her lungs but all of a sudden she required more oxygen and her blood gasses were looking worse. There went all hopes of extubation. It turned out the blood was coming from her intestines (it was coming out of her NG tube) and they seemed to be able to address that. But her carbon dioxide levels were high and she still required more support on the vent than when they were considering extubating. She was more alert and communicative but nowhere she needed to be to get off that vent. She also tested positive for yet another bacterial infection.

Everyone knew that the breathing tube had to come out. The plan was a trach but first they had to make sure the bleeding had stopped and she had no active infections. The hope was that she would be able to move more with the trach, get things moving in her body, and get that fluid out of her lungs. Ariella was looking forward to getting the trach. She was looking forward to drinking, eating, moving, walking, and getting back up to the 5th floor. The goal was that 2 or so weeks after trach placement, if she remained stable and blood pressure could be managed with oral meds rather than IV drips, she would be able to leave the ICU. Because yes during all this time she still had all those other issues. But with the news of the trach Ariella was in a much better mood and her anxiety decreased. She was awake a lot more, communicative, watching TV, playing tic-tac-toe, and doing crafts. Her humor was back as she was pranking doctor, nurses, and respiratory therapists with a fart machine one of her doctors gave her. She even asked for a friend to visit. We had plans and everyone’s hope was back. Is it better to have hope and have it completely shattered, or is it better to lose all hope?

On April 24 Ariella had the trach placed and we could finally really see her face again. When she woke up from the surgery and I told her the tube was out she gave a big smile. She was frustrated that it would still be another week before she could try drinking but at least she was much more comfortable. Several days letter she did get to try some drops of water which made her so happy. But as had been our lives the entire stay in the ICU, tiny steps forward and giant steps backwards. Ariella had fluid around her heart which had to be drained and respiratory-wise she just wasn’t improving. We were making good weans on the vent but then had to go back to higher settings. Our hope once again was fading.

The day after Ariella was intubated her chest x-ray looked better and they started slowly weaning the volume of oxygen. Respiration rate and heart rate were good and Ariella was communicating by writing. But kidneys and liver were looking worse again. There was always something. But initially she was handling everything ok. She had her nails painted by a nurse, played games, and was pretty alert most of the time. She was getting out of bed with PT and strung some beads with OT. We were scared but also optimistic. But as time went on Ariella became consumed with just wanting a glass of milk, water, or Rita’s Italian ice. That pretty much consumed her thoughts. Imagine just wanting a drink and not being able to have one. She cried frequently over that. It was unbearable to see her cry and not be able to help her. And it was next to impossible to hug or or hold her with all the tubes and machines. I tried laying in bed with her but was told I couldn’t when she was intubated. I should have fought harder to be allowed to stay in the bed.

The days in the hospital somehow continued to pass. We tried to engage Ariella in activities when we could, like bingo, but her anxiety increased exponentially. She would have a good day, even up and walking with PT but then she would require more oxygen support. Every time they tried to wean Ariella would get blood in her breathing tube and they would have to increase the support again. But they would have to increase it to even more pressure than when before they started weaning so she was taking big steps backwards. They took her to get a CT scan which really didn’t have many answers and when she came back we had the most terrifying experience thus far. The nurses were trying to suction her tube and it wouldn’t go down. Her oxygen levels quickly dropped and she wasn’t getting air into her lungs. They called a code and at the time I couldn’t imagine anything more frightening than every available doctor and nurse racing to your child’s room. She had a clot stuck in her tube which they managed to clear but that moment broke me. From that point on my hope quickly faded and I could not stop imagining the worst. When Ariella woke up I told her she took 10 years off my life and she laughed. She had no idea what had happened.

Ariella continued to beg and beg for drinks. Since she couldn’t have that she sat with wet towels on her head and bags of ice along her legs, saying that helped to refresh her. And then a nurse dipped a mouth swab into a melted popsicle and swabbed Ariella’s mouth with it and she was then Ariella’s favorite person. We happened to have a large tub of Rita’s as well so we dipped swabs into that as well. Ariella was so happy. How heartbreaking is that? She was having such a terrible time that a tiny taste of a popsicle cheered her up. She also got some milk through her NG tube and a taste of milk on a swab. She wrote that her spirits were no longer crushed because she was able to have those tastes and also milk and water through her NG tube. Read that again. Her spirits were no longer crushed. How devastating. How horrific to know your 11-year-old child’s spirits were crushed. Ariella, the most optimistic and fearless person I knew had her spirits crushed.

Sitting in the PICU all you do is stare at the monitors and listen to the beeps. We would constantly watch the oxygen levels and to see if she held her sats if a change was made to her vent setting. And during all this time there was some stability, some improvement, and some worsening. But mostly worsening. Again they started to wean the vent and again she began coughing up blood. And again the settings went back even higher than when they first started weaning. And because Ariella never did things the easy way she picked up 2 more infections.

By the end of March Ariella was absolutely miserable. She stopped communicating, wouldn’t engage in any activities, wouldn’t do much of anything including watching TV or letting me read to her. I missed the sound of her voice so much. I would have given anything to hear her talk, yell, laugh, anything. And to feel her arms around me. After being in the PICU for over 3 weeks and on the vent for over 2 weeks we didn’t seem to be any closer to extubation.

February 26, 2019. BMT Day 0. Transplant day. What they call a “re-birthday”. We were filled with so much hope. This was it. This haploidentical transplant with the bone marrow from David was going to fight off all of those micro-metastatic cancer cells that kept forming tumors. We were so optimistic that this would be the cure we were looking for. We knew we had some difficult weeks ahead of us but we had been through so much we knew we would get through this too.

February 27-March 8, 2019 (BMI Day +1-Day +9) From BMT Day +1 Ariella was not feeling well. She did get out of the room a bit each day and even got to see the BSO perform Peter and the Wolf in the hospital. She got PT, did some crafts, and got some high doses of chemo. She had a visit from a friend but mostly she felt pretty lousy and was in some significant pain. They started her on TPN (IV nutrition) because she had lost a lot of weight since she was admitted. She ended up with a fever and had blood in her vomit and stools. She felt terrible. Her fever ended up being from strep pneumonia and her blood pressure and oxygen levels were low. She also ended up testing positive for the flu. She was moved to the PICU for closer monitoring and to be administered oxygen if needed. We had to completely pack up her room at midnight when she was transported to the PICU. I thought it would be a quick stay. Had no idea what we were in for.

March 9, 2019 (BMI Day +11). Ariella was on oxygen but her lungs had worsened and the nasal cannula wasn’t doing the job. They tried a mask but that caused her to panic and her oxygen level very quickly dropped. They were on the verge of intubation but they ultimately found the right oxygen delivery without having to intubate. David and I were taking turns at the hospital so I had left. Very shortly after I got home I got a call from David that her blood pressure dropped and they were having trouble controlling it. They put in an arterial line to keep a closer eye on the BP and gave her meds. I felt I had to be there so quickly went back to the hospital.

March 10, 2019-March 14, 2019 For the next few days things were up and down. She was showing signs of VOD (veno-occlusive disease) which affects the blood vessels of the liver. So she was given yet another medication for that. She was on bipap for oxygen and it seemed to be doing its job. Fever was gone, heart rate was down, and BP was controlled without meds. Ariella was of course scared and frustrated throughout all of this. She even yelled at us which made me quite happy. But as some things were improving (her chest x-ray and liver) her kidneys were not doing their job. So something else to monitor and hope was going to be reversible. During this time Ariella had the start of engraftment of the the bone marrow which was great news. But she also experienced engraftment syndrome and they warned us things would get worse before they got better. Her lungs became more fluid-filled and intubation was being discussed as a strong possibility. By March 14 things seemed to be headed in the right direction. She had full engraftment, kidneys, liver, and lungs also all showed signs of improving. She was still on bipap for oxygen and they even reduced the amount of oxygen she was on (though she was still on the same amount of pressure). She was getting PT and OT and she was more alert and communicative.

March 15, 2019 I was at work when I got the call from David that they were going to have to intubate. I rushed to the hospital and I got there as they were prepping for the intubation. All I could see was the panic and fear in Ariella’s eyes. She was so upset and terrified. And so was I. I knew. I just knew. If she went on a ventilator she was not going to come off.

January 31, 2019. Just about 2 years from diagnosis day and 8 months into relapse treatment things all of a sudden seemed to be moving much faster than we expected. We spoke to the bone marrow transplant (BMT) team at Hopkins and scheduled the admission process for the week of February 18. Though we were glad to be in a position to have BMT, there was a lot of anxiety involved as well. BMT was no walk in the park with its own share of complications and we were looking at at least 4-6 weeks inpatient. It was a whirlwind couple of weeks but we were ready.

February 10, 2019. Ariella performed in 2 groups and her tap solo at the dance competition. She won some awards and even got invited to Nationals. But all that mattered that day was the love and support we all felt.

February 11, 2019. Ariella spent over 5 hours at Hopkins doing various tests. David had his own tests as well since he was going to be the donor. We actually stayed over in the city the night before because they were calling for an ice storm and we wanted to make sure we could get to the hospital. What if we didn’t make it and the BMT was delayed? Would that have changed the outcome? We will never know. After spending the entire day at the hospital Ariella finished the day at physical therapy, from which she graduated after 1 year and 8 months.

February 14, 2019. Ariella’s last day of school. How could we have known it would be her last day of school ever? We also learned that one of Ariella’s tests for pulmonary function was borderline for the transplant. It was only off by 1 percent, she redid the test and was not excluded. But. This one kills me. Because it was her lungs that failed her after the transplant. Maybe she shouldn’t have had the transplant after all. Maybe that was the sign we needed that her lungs would not be able to handle it. What if?

February 16-17, 2019. Ariella spent her last weekend at home for what we thought would be 4-6 weeks and ended up being forever, doing what she loved most, dancing!

February 18, 2019. Admitted to Hopkins for pre-transplant. She had a PICC line placed and that was it for the first day of admission. She had some visitors, silly-stringed a teacher, and kicked the adults out of her room while she hung out with her friends.

February 19-25, 2019. BMT days -7 to -1. Ariella started chemo which didn’t bother her too much that week. She spent time participating in the Mix 106.5 radiothon, wandering the hospital taking pictures, dancing, and playing games with friends. By day -1 Ariella was feeling pretty bad from the chemo and she also had full body radiation. The next day was the big day.

February 26, 2019. Transplant day.

So here it is. The final chapter of Ariella’s story. This is going to make you uncomfortable and sad and scared and probably even horrified. It will make you angry. It will not only break your heart but will shatter it into tiny pieces. And that’s the point. Because this should not happen. This should not continue to happen. Childhood cancer is not the cute bald kids on St. Jude’s commercials. It’s brutal. It’s destruction and side effects and infection and hospital stays and feeling lousy and fear and anxiety and pain and trauma and devastation and heartbreak. It’s being poked and prodded, needlesticks, surgeries transfusions, dressing changes. It’s grueling and isolating and unfair and relentless with loss of privacy and dignity. Sure, Ariella smiled during treatment. She had some great times, we made sure of that. But she also screamed in pain that pain meds couldn’t touch. She carried a puke bucket with her all the time. She asked questions like, what if this treatment doesn’t work? She rarely made it through a full day of school. She had excruciating headaches. She was scared and lonely and missed out on so much. The treatment ravaged her body. And this was all before she ended up in the PICU.

Ariella’s story left off in the middle of relapse treatment, in September 2018. Ariella had started middle school and loved it. She was back to dancing and learning a tap solo. The first treatment protocol for relapse did not work. Meds were switched. All outpatient. Treatment this time around was not as disruptive. But the new meds required injections again to boost her counts. She turned 11 and had her birthday party at an indoor skydiving place. Fearless that kid was. We went to New York to see School of Rock with the Do it For the Love Foundation. She got to meet the cast and get a backstage tour! She took part in Hockey Fights Cancer and skated with Phoenix Copley and other Caps. She delivered tons of bears to local hospitals and respite houses. She was living her life, cancer be damned. She started radiation in November 2018. The goal was local control to get her NED (no evidence of disease) so she could get the bone marrow transplant. In the beginning of December we learned that the current chemo regiment also was not working. So once again we had to come up with a new plan. There was still an option but if this didn’t work… Rather than chemo it was Pazopanib which was a targeted therapy. When I had to tell her once again that the chemo wasn’t working but that there was another med we were going to try, she said “well at least I have options.” And the new med was much easier. It was an oral pill taken daily with fewer side effects though it turned her hair white which she loved and totally rocked. She continued with radiation and experienced horrible nausea throughout that treatment. But through it all she was thriving at school and continuing to kick ass on the dance floor. She finished with the radiation in January 2013 and we finally got the news we wanted. We couldn’t say she was cancer free because there was the strong likelihood that there were still micro-metastatic cells, but there was no new disease and no metabolic activity in any of her lesions. This was everything we hoped for. We could do the bone marrow transplant (a trial in sarcoma patients) and hopefully get rid of this disease once and for all. All of a sudden things were moving quickly with admission scheduled for the week of February 18 and transplant scheduled for the 26th. The timing sucked for Ariella. She was gearing up for dance competition season. Missing competing for 2 years Ariella was thrilled to be back at it. And she was working so hard. But we told her it would be worth it to miss one more season in order to be able to dance for years to come… She was fortunate in that a competition that was going to be held locally allowed late entries from her dance studio so Ariella got to perform in a couple of group dances and her tap solo. We never could have imagined it would have been her last time dancing. Ever. What if? What if the timing was different? What if we asked her doctors to delay until after competition season? What if, what if, what if?

So here we are. Ariella started her relapse protocol in June. It consists of 3 different meds, 5 days on and 2 weeks off. All outpatient, mostly oral requiring mostly only weekly clinic visits. She has completed 4 rounds so far. After the 2nd round the chest x-ray showed a decrease in the size of the lung lesion that showed up on the initial x-ray with no new lesions visible. Next up will be a PET scan. Once we figured out how to manage her nausea she has tolerated it pretty well. The worst side effect is probably diarrhea which can cause her some anxiety depending on where she is. She gets an icky taste in her mouth on chemo weeks and gets pretty achy just after chemo week likely due to the steroid she’s on during chemo. She gets fatigued but mostly she’s been able to do most things, even starting middle school right in the middle of a round of chemo. We had to cancel our Myrtle Beach trip but were able to go to Disney, LA, and Ocean City. Ariella’s biggest disappointment was that she couldn’t go to sleep away camp. This treatment is currently much less disruptive which is great. Her blood counts stay pretty close to normal so we don’t have to worry as much about being in crowded places and whatnot so we can continue to try to live as normally as possible.

In a few weeks or so Ariella will begin lung radiation. She also will have radiation to her sacrum as there were “irregularities” on the initial PET and MRI. Lung radiation will be about 2 weeks, 5 days a week and sacrum will be 5 1/2 to 6 weeks. That may be concurrent with the lung radiation depending on how she does. She will continue to get chemo during radiation.

If after 6-8 weeks after radiation she is showing stable disease she will then have a bone marrow transplant from David or me. We are both candidates but David will more likely be the donor because of blood type. The idea is that the new bone marrow will fight any remaining cancer cells since Ariella’s obviously doesn’t. This will be combined with a medicine that will hopefully boost the new immune system. The bone marrow transplant will be at Hopkins.

In the meantime we will continue living our lives. Ariella loves her new school (yay)! She doesn’t want to miss any because she thinks the classes are very interesting and loves the way the teachers teach. The dance season is starting so even though competition is again unlikely due to timing of things, she gets to actually dance again. We will be at CureFest next weekend and she will turn 11 in October. So more things to look forward to. Radiation and BMT will be much more disruptive but we will cross those bridges when we come to them. Thanks so much to everyone who has supported us to date and continues to do so. Thank you to Karen Sachs Academy of Dance Ariella’s 2nd family. She always had the studio to go to.

Thank you to everyone who read her story. And especially to those who shared it. Awareness really is important to get the funding needed for research. Because it could be any child. Childhood cancer is very uncomfortable but very real and it’s time for a cure. We need to talk about it, not look away. I wasn’t a cancer parent either, never thought I would be, until I was. Please share and spread the awareness. #AriellaStrong #PediatricCancerAwareness #MoreThan4 #ItsNotRare #GoldStrong