Aria Danielle Crane was diagnosed with Hodgkin’s Lymphoma stage III the first time and relapsed at stage IV the second diagnosis. Her symptoms began as a swollen lymph node after a week of strep throat. So, we thought the strep was back.
Aria was always built like a beautiful model. She was 25 inches long at birth weighing 6 pound 6 oz. She was always super tall and skinny. Until the steroids r best friends. She was funny, creative, loved art, and music. She loved babies and mothering. She attempted volleyball, soccer and basketball, I think just to make me happy. She was always singing and dancing, dressing her brother and sister up and making them do crazy, silly things. People from all backgrounds and lifestyles flocked to her. She made friends, wherever she went. She was always proud and beautiful. Always kind and loving. Never afraid to talk about her cancer and could always explain to young children where her hair went and why. Even in her own uncomfortable situation she wanted people to smile and laugh. That is why she always decorated her mask. Men loved to tell her that her mustache was better than theirs and a conversation about her cancer would evolve. She never wanted anybody feeling sorry for her. She was a fighter.
Turquoise was her favorite color. Her nails were always long, and painted perfectly. She was not embarrassed by her bald head. She went from 95 pounds at her lowest to 150 pounds in just a few short months from the steroids and water weight, but still accepted every part of her body. Her body was stretched to the limits and was covered from her feet to her chest in stretch marks like you have never seen. She had stretch marks inside of stretch marks, but this never brought her down. She embraced it. She would always tell other kids who were having a bad day to “Embrace the struggle”, this was something I could never understand why she did. Aria was an amazing artist and singer. Peacocks were her favorite. She loved her dogs and wanted more than anything to come back home. I just never thought I would be bringing her home in an urn. A week before she passed she told me she wanted to paint her room yellow with smiley faces on the walls. We now have a room just like she would like, we call it our happy room.
I want people to remember how deeply Aria loved everybody. She was a true angel on earth. She would bring granola bars and water with us everywhere to give to homeless people. She loved no matter what you looked like or what issue you had. She would always try to make people more comfortable than the situation, just like wearing a mustache on her mask. She truly had a heart of gold.
At 9 years old Aria complained of a lymph node by her collarbone hurting while we were tucking her into bed. She had strep throat the week before so I told her we would call the doctor the next day. I took her to the Doctor the next day which was March 5, 2009. Her pediatrician looked me directly in the eye and said something is wrong, and that I needed to go directly to ER for X-rays. Again thinking not much of it, we went and got the x-ray and I headed off to work I went. For some reason, I left my phone in the car for an hour while working. When I got back to the car I had 15 messages and 30 missed calls. Hmmm, I checked the first message and it was pediatrician office telling me to call them. Same with second, and third, and about the fifth message was from the Doctor herself giving me her personal number and telling me to call her ASAP and no matter the time as it was evening. I immediately stopped listening to messages while trying to stay calm with my young 9 year old daughter strapped securely into the back seat. I called her personal number and she was frantic. She said I need you to listen very carefully. She explained to me that she already contacted the nearest Children’s oncology to our small home town and that and that they needed me to go directly to the hospital for a flight for life to Denver, Colorado. I shockingly told the doctor that she was crazy. I kept looking at my sweet Aria in the rear view mirror and smiling while my heart was breaking, I was attempting to not let her know I was scared. I explained to the doctor that I needed a little bit of time while I told my husband, and found somebody to care for my younger two children. She said, ok but makes it fast. When we got home I looked at my wonderful husband whom was cooking dinner and working on homework and other things with the younger two, and told him we need to talk. We told the kids to go play in one room and we would be right in.
We went to the bedroom and he asked, “What’s up”? I tried to stay calm and not break down while explaining to him that Aria possibly has cancer and that they want us on a flight for life ASAP. He was extremely calm and said “ok, let’s pack”. I called my mom and told her to please come over with an overnight bag and I would explain when she got here. Our next step was to go tell the children without scaring the crap out of them. We placed our children on the bed, Aria 9, Trinity 6 and Trace 3 years old. We explained that the doctors think Aria is really sick and that we have to fly her to a better hospital in Denver Colorado. Tears were had by all. Needless to say I had never spent more than one night away from any of my children. We told the kiddos to help Aria pack a bag with her blanket and a special animal from each of them to comfort her while she was away, and that we promised we would be back as soon as possible.
Aria and I flew in the airplane to Denver, Brian and his father drove because only one parent could go in the plane. Brian’s sister Kelly met me at the hospital and as soon as we got there they took Aria back for an MRI. It was close to midnight at this time; I was exhausted and scared out of my mind. We finish her MRI and they give us an ER room to rest in. At first we were just trying to make Aria laugh and did not realize the severity of what was going on. About ten minutes after the MRI a doctor came to talk to me in the hallway. He was very kind, and very truthful about what the MRI revealed. He told me that they would be admitting Aria to the hospital and first thing in the morning she would be having a biopsy. At this point I am a ball on the floor. He picked me up and said momma I need you to be strong, she needs you to be her Rock. Then he asked me if I wanted to tell her what the MRI revealed or if I wanted him to. I looked at him with tears and a broken heart and said “you tell her”. He said they do not hide from the children what is happening, what will happen and what could happen. He gently came into the room with me not far behind and I sat on her bed with her. He explained in great detail what was happening, what they thought she had and how they were going to fix her if this is what was going on. At this point Aria, Aunt Kelly and I were all crying. I texted my husband who was somewhere between home and the hospital and told him the main doctor thought it was cancer also. He confirmed where they were and I went to call my mother and update her on results. At this point my heart was in my stomach and I felt completely lost and dead inside. A few hours later they transferred us to a room on the 7th floor of the hospital. It was a crazy place to be. A beautiful building with happy things to look at everywhere and yet I could feel no joy. Eventually we got settled in and tried to sleep, me on the parent bed, my poor sister in law on a chair that she kept falling off of anytime she would start to doze off. Of course we laughed about this every time. At about 5 am my husband and father in law came in the door. We all slept for a few more hours, very uncomfortably. At 7 a.m. was nurses shift change, so a room full of people came pouring in explaining Aria’s situation to the next set of nurses. This day was completely a blur. We spent the day meeting so many hospital staff, and trying to keep Aria busy and her mind off of the circumstances. They kept pushing her surgery off for about three days, finally my father in law who was a lawyer had a nice chat with the staff about if this was such an emergency why the flight for life and why were we just sitting. They explained that this type of cancer can grow huge amounts in just a few hours and if we had drove her it could have grown so fast that it could have crushed her heart and lungs and the drive could have been too much to bear. Needless to say they got her in for surgery about an hour later. Within 3 hours it was confirmed to be stage III Hodgkin’s Lymphoma.
They told us the plan and that we would start by placing a port and start chemo within the next two days. The following day they placed the port and started chemo that afternoon. We were in Denver for 7 days at this point. We were able to rent a car and travel back home between chemo sessions. At this point she had 9 months of chemo two sessions per month. We would travel to Denver the day before chemo have chemo the next morning and leave ASAP after wards to make the 6 hour drive home and hope she did not get sick until we got home. Most of the time she was sick about half way home and was sick for about 5 days and then good for about 2 before having to return to Denver. She completed these 9 months of torture and was declared cancer free. Aria was clean for 18 months and we thought through all she had been through she had beaten cancer. At this point she had checkups every 3 months.
Exactly two years to the date on March 7, 2013 we had planned a scheduled MRI and checkup for the weekend. We were throwing my sister in law a baby shower. My husband woke the morning of with a scratchy throat and so I dropped him and the kids at the mall while once again my father in law and I took her for her scans. This was the first set of scans I was not nervous about. While waiting for results we were in the hospital room goofing around blowing up gloves into balloons and being silly. The doctor came in the room and was completely somber. I looked at him and said “just give it to us straight”. He pulled up a chair and pulled MRI results up on computer. I knew instantly what I was looking at. Her Cancer was BACK!!! I seemed to have taken this news worse than the first time around. I hugged Aria, looked at my father in law and said I have to call Brian. I went to the hallway and completely lost it. I called Brian and said I need you now and your daughter needs you worse, get up here ASAP. MY husband, kids, mother in law, brother in law and sister in law all showed up. We were all in Denver to throw the baby shower. I still had not gathered myself. I was completely lost and felt like I had died inside once again. They all went into the room without me to comfort Aria while I continued to gather myself. A doctor came and introduced herself to me, took me to a separate room and explained what was going to happen at this point. Thinking I knew everything there was to know about cancer, what she was saying made no sense. A bone marrow transplant, more chemo, radiation, what is all this she speaks of. So once again a surgery was scheduled to place a broviac line.
We were released from the hospital for the night, we went to dinner, and I just sat there, not wanting to eat, not wanting my kids to know how scared I was. We made a plan that my husband, Aria, myself and my brother in law would rent a room across the street from the hospital since her surgery was at 6 am the next morning. We went to the room and acted as crazy as 4 people who are scared can act. My brother in law went and bought adult diapers to dress up and do a baby skit since we were there for a baby shower. He dressed in these diapers to make Aria laugh, that was our whole point of that night.
Aria slept between Brian and I in a queen bed, funny in itself. We woke early the next morning, ran across the street, had a broviac placed and headed straight to the baby shower. I was a broken mess at a baby shower I had planned, but was not able to participate in. The rest of the family did a great job distracting the mom, and they waited for us to get there. Two hours past the time of baby shower starting. We walked into the room, everybody stared, wanted to hug, and made it very hard to focus. I had to leave multiple times to go outside and cry my eyes out. The next day we were admitted to hospital for a few days to get her first rounds of chemo. Again, I thought I knew everything about cancer and how my child would react to chemo, so once released, we treked 6 hours home.
Day two of being home, Aria was sick, she battled a low grade fever of 99.1 and I watched her like a hawk. Family came and left. It was Trace’s fourth birthday, crappy day for him. My last brother came, dropped off a gift and told us if we needed him to call. I once again checked Aria’s temperature and it was still 99.3. I told him if it creeped up to 100 as we all know it’s immediate attention. He was gone maybe 10 minutes; she looked horrible to me so I checked again. It was 100.1!! I called him, he came and swooped her up in his arms, carried her to car and said go, we will make it special for Trace. Here I am again, leaving my other babies, and on Trace’s birthday so my guilt was strong. We got to the local hospital; another flight for life was in order. My husband felt since I flew with her the first time, he would go and I would drive the 6 hours. As soon as we knew the plane was almost ready I left hospital. I called all the family on the way home to pack and my brothers offered to drive with me. One brother was at my house waiting when I got there to drive me. (A bit of a funny, I am 6 feet tall and my brothers are 6’2 and taller. I drive a Prius.) The brother that was there was 6’4 and I said we should take my car. He laughed and said “but I’m driving”. He and I drove the 6 hours, of course he followed the speed limit and it drove me crazy. He kept saying we will get there safe and sound, and then we had to slow because of snow. Finally we arrived at the hospital at 3 am. We got to her room on the 7th floor and I crawled into the parent bed next to Brian and my Brother took the reclining chair. Every 30-45 minutes we heard a crashing sound. It was my brother’s feet hitting the floor because his feet were too heavy for the chair. This is another late, crazy night that we laughed about often throughout treatment.
The reason Aria had a fever was a reaction to chemo. The drill was the same, they tested her blood for any and every infection and virus. All tests came up negative and a few days later we were released to head home. We got home and had a few weeks break before returning for chemo again.
Aria always got super sick from chemo a few hours after receiving it and stayed sick for a week or so. We learned after the first go around that she would probably get a fever a few days after chemo and would need to be admitted to the hospital so we ended up staying in Denver. After a few chemo’s we were given the name of an apartment whom would allow us to stay there because we lived so far away. The name of the apartment was Brent’s Place. This apartment was only for transplant patients who lived too far away to continue traveling back and forth. I contacted the apartment and they agreed to put us on a list for an apartment and also offered us a short term visitor room for a few days after her chemo until her fever hit. This was our routine for about 6 months. At six months it was time for her bone marrow transplant which is a 30 day in hospital stay. We stayed in the hospital for 26 days and were released to our new apartment waiting for us at Brent’s Place. These apartments are fully furnished, and have all bleachable surfaces because transplant patients are so vulnerable to any virus or disease and everything they come into contact with can make them super sick. All bleach and cleaning supplies are supplied by donations, and dinner is cooked three times a week and breakfast on Fridays for families. They had super strict cleaning rules and they required random checks.
Our first night in our apartment at about midnight the fire alarms randomly went off and Aria grabbed her mask she had to wear and we headed outside. We sat and laughed about the craziness that was going on around us. This night we met all 14 other families that lived here. This was a very memorable night that we laughed about often. On the weekend, two days later, Brian and the kids who were in school and working to help get by during this time, came to visit. Because we didn’t want to get Aria sick and all three of them work or went to public school they had to spend 24 hours away at a hotel to detox from the outside world before coming and seeing us. Two days later after being released from transplant, Brent’s place held a 5k fundraiser to help with cost of the apartments and Aria wanted to walk this 5k. So, we spent the day tie dying shirts for the walk/run. Aria was a strong willed little woman and walked the whole thing, it took us about an hour and a half, but it was a huge success. Brian and the kids spent the weekend at the apartment with us. Every two weeks they would come and visit for a four day weekend. All teachers and bosses were on board.
We were supposed to stay at Brent’s place for 100 days post-transplant. Aria had started radiation as a bandage to the chemo and transplant to make sure the cancer was really gone. I signed my life away, know the 1 percent chances of anything bad happening from radiation. She completed her 9 weeks of radiation with little effect on her.
At about 12 weeks after in the middle of the night she was having really hard time breathing so I took her to ER. At the ER it was determined she needed to be admitted to ICU. I called all family, because this was all new territory to me. All family members came up and Aria was intubated. A few days later after we all had watched her suffer she was moved from intubation to a cpap and bipap machine.
A few days later she was moved back up on 7th floor and began improving every day. About a week later she and I were back at apartment. She now was on oxygen full time at this point. She was going to physical therapy three times a week to strengthen her lungs which were damaged by the radiation. Her lungs started getting hard from the damage. We were warned there was a 1 percent chance that this could happen. I was sure it was never going to happen to my kid, “Yeah, go ahead and do it!!! Let’s make sure this cancer is gone for good!!”
During the ICU trip she was put on high doses of steroids to help the lungs function correctly. Every week we would try to get her steroid dosage lower and she did great the first week, and by the second week she couldn’t breathe again so we would tweak her dosages week to week. This went on and on. We were now over 290 days at Brent’s Place. Her happy attitude towards me started turning angry, sad and depressed. During this time she also acquired diabetes from the steroids that we couldn’t get her off of. So then she couldn’t breathe and she also was getting shots to the stomach at least twice daily. She had to watch what she ate like a hawk, and she had to be kept inside and locked in the apartment. Trying to keep her spirits up all while only seeing her daddy and siblings every two weeks. She was always smiling in public for everybody to think she was happy and going strong, but as her mother, I could see her attitude towards life changing slowly.
May 3, 2015 we had my nephew, his wife, and daughter come to visit with their new baby goat. We had a great happy day! We played hard, laughed, and had a great time together with family. They left town and we watched girl movies and relaxed. She ate like a champ, no tears, not many insulin shots and it was all in all a good day. At 11 pm she got out of bed, took off her cpap and went to the bathroom. I of course laid there and listened to her as a mother would until she was back in bed. As she was in the bathroom she made a weird noise. I was trying to give my 12 year old girl her privacy, but just yelled, “Hey are you ok?” She immediately said, “NO!” This was not like Aria. I ran into the bathroom and asked what was wrong. She could not breathe. I grabbed her oxygen and wheel chair and picked her up off toilet and headed to hospital like so many times before. The hospital was only a block away from the apartment so it was faster to put her in the car and go rather than call an ambulance.
We got to the ER and they tested her for everything. I told them it was her lungs again and that we needed to increase her steroids again. Eventually we ended up in ICU again. I called family and told them not to head up until morning. My husband does not listen, like a good daddy. Early AM he showed up in the ICU, and we were laughing, joking and having a good time. Aria’s mood was good; she was able to joke and laugh with the CPAP she was on. She was not really improving so they decided an x-ray was needed. An x-ray showed she had a torn intestine.
They tried to fix it and it was a big failure. Doctors kept telling me it was going to get worse and I told them they were crazy. Aria kicked all nurses and doctors out of her room because she was tired. Dad followed them out to use the restroom. She looked at me and with one hand gave me the gesture “I love u” and immediately her breathing decreased. Nurses and doctors come running in to vent her. They attempted to put I.V. in her arms, but her skin was so thin it would just rip big huge gaping holes in her arms, so they ended up putting attachments to her broviac and iv’s in her feet.
Her dad came back to room and said, “What happened?” I looked at him dumbfounded. She started improving on the ventilator. Both of us were by her side talking to her, encouraging her, reassuring her. She started decreasing so they moved her to another type of life support and again she started improving, but Doctors told us this was the end. I lost my temper at them; told them they were crazy and that she would pull out of this. They told us there were no more options except one but they were afraid it will kill her in minutes. It was a machine that shakes her whole body and they were afraid her lungs would pop like her intestine had. I screamed at them and told them they don’t have a choice and they had to try. My husband at this point was trying to convince me she was going.
Eventually she started deteriorating again and they put her on the last life support that they had. Again she fought with all she had. At one point she turned bluish in the face but seemed to be improving. I asked why and the nurse said it was because the oxygen to her brain was so low she wasn’t getting enough. At this point I realized she was leaving me.
Her heart rate started dropping and her blood pressure stayed super low 45/23. I kept telling her it was ok to go and that we would be ok. I told her over and over how proud of her I was and that I loved her forever. For another hour she kept holding on and I as her mother could not take her off the machine, because I was worried about if she started improving. After many I love you’s, I realized the only two people who had not been in to see her were her siblings. She looked so bad and not like herself I could not allow her siblings to see her like that. I explained to her that I knew what she was waiting for and that it was not going to happen. I took a picture of her in the shape she was in because at that point in time I knew someday her siblings will come to me and say why did we not get to say goodbye, we were there. And at that point if they are old enough I will show them the picture and explain they were too young to see their sister like that.
Within minutes of telling Aria there was no way her siblings were coming back and that they loved her so much and she was their hero, she left her pain behind and flew to heaven. Her dad and I stayed with her body and cried for a bit. I made sure the nurses knew to keep her covered in her blanket because she loved it. I kissed her body one more time and we left. We met the family outside the ICU and agreed to go to apartment for the night. My younger two still did not know she had passed.
At the apartment we got inside, I told my husband that all four of us would sleep in the full size bed Aria and I shared every night for the past 290+ days. All of a sudden the fire alarm went off. I started laughing and he looked at me like I was crazy. I told him about our first night here and how Aria and I had sat outside for a while because of the alarms. I said, “She is ok and she is telling us.”
We got outside and my kiddos were there and I said, “Hey guys, good news….we get to go home tomorrow.” My son Trace, 6 at the time, said, “But, what about Aria?”
We went on a walk around the block, sat down with our babies and explained to them that Aria gave it all she could, but she left this earth for heaven. They both let out a horrifying scream and we all cried. The next day after a not so good night’s sleep our families showed up to the apartment with boxes and Tupperware’s and packed it up within an hour. We went to hospital to say our goodbyes and thank yous. I couldn’t go to the morgue, it was too hard. So my husband and father in law went to discuss what to do next. It was going to be two weeks to get her body back to our home town, so they decided to cremate her. She was mailed to our local mortuary and a family friend took care of the rest of her beautiful services. We planted a tree in her honor at the local middle school.