Meet Dariush & Emma
“I remember seeing him reach for other babies as though to say I recognize your pain and I want to give you my love.”
Emma and Dariush in the NICU
Tell us about you and your family
After being married for 7 years, Nima and I welcomed our first and (currently) only child. We named him Dariush after one of the greatest rulers of the Achaemenid dynasty, King Dariush the Great. When we chose his name we didn’t know that like King Dariush he would need to be a brave warrior fighting for a healthy childhood from day one.
“From that moment, our eyes had been opened the fact that leukemia is 10%-20% higher in individuals with Down Syndrome compared with the overall population. ”
What illness was your child diagnosed with?
Dariush was diagnosed at 9 months old with Acute Myeloid Leukemia (AML). Our
journey to, and from, this moment in our lives differs from most. We had expectations of what our healthy child would be like and what they would grow up to do, expectations that we didn’t even know we had until Dariush was born with Down Syndrome. Twenty- four hours after birth we had to mourn the loss of that imagined child and embrace the little premie with cords and beeping machines attached. Dariush spent his first 4 weeks in the Neonatal Intensive Care Unit (NICU) with the diagnoses of: Down Syndrome, Atrial Septal Defect, Laryngomalacia, and Transient Myeloproliferative Disorder (TMD).
TMD is a bone marrow disorder that can occur in newborns who have Down Syndrome. In most instances this disorder starts to damage organs. The treatment Dariush needed was a round of “homeopathic” chemotherapy. Thankfully, the treatment corrected the side effects Dariush was experiencing.
From that moment, our eyes had been opened the fact that leukemia is 10%-20% higher in individuals with Down Syndrome compared with the overall population. Dariush’s TMD meant his chance increased even more. He would need to be followed by the hematology team till the age of five.
For seven months we drew his blood, testing for any abnormalities. Our hope grew. Our fears lessened. At about the age of 8.5 months we noticed bruising not explained by a clumsy child learning to navigate his surroundings. This was followed by days that he seemed very lethargic and then a rash started to appear. The rash looked very similar to his petechiae caused by the TMD. Concerned we moved up his hematology appointment. The results this time were heartbreaking. Dariush had Acute Myeloid Leukemia (AML) and needed to start chemotherapy immediately. We were told we had to go through least 5-7 intense rounds. We were also told that unlike most families who receive the horrible diagnosis, our survival rate was 45% more favorable because he had Down Syndrome.
What did you feel and experience learning the diagnosis?
We faced the emotions of fear and angry that we had to face another hard battle when we still felt exhausted from our birthing trauma. For me specifically, I remember quietly crying, brushing the tears away and then mentally preparing myself to be the strong support I knew sweet Dariush would need. I chose to focus on the hopeful survival rate taking courage as I prepared for our battle.
Dariush and Nima in the NICU
“Ten months in the hospital of constant interruptions and no real quality time together wore on our relations as a couple. This is something I don’t feel like is talked about often.”
What surprised you along the journey?
We did not realize that the doctor we saw as an outpatient would not be the doctor we (1) would see daily while going through chemotherapy. This felt very strange, knowing that they were just a wall apart but not present. The report and understanding that we had built with our doctor would have been reassuring to have. I am not saying our inpatient team was not great, quite the contrary, but the transition would have been easier on us as parents if we had the same faces and communication style.
There were several hard conversations with the dietitian. We were very surprised with (2) the amount of advocating we had to do in this regard. Our family has a specific diet and will not blindly offer Dariush food that they could not explain what all the ingredients were. It was a battle to keep him on this diet as long as we could. In the end we gave some ground by offering Dariush items to eat that we usually wouldn’t (dairy, meats...) and they agreed to make suggests that were more whole-food and plant-based when they could.
The last two rounds Dariush’s weight had dropped do to the side effects. They were concerned and pushed to have the nasogastric (NG) tube put in. I felt very broken. To me it felt like I had failed in providing for my son. Thankfully we had an excellent doctor who could tell what I was going through. Her words were eye opening. She explained that they expect the NG tube to be needed at some point in the journey. She went on to apologize that this was not explained to us during our first round of chemo, or before we even started.
We didn’t expect the difference between the NICU life and the inpatient life. Let me (3) explain, in the NICU you are practically forced to leave at night because there are no beds or privacy for the patient’s family. When you are an inpatient you receive a private room and the expectation that someone is with the child at all times. We didn’t know we had the “comfort” of “our own space”, or the fact that we would be able to stay with him all the time. This also meant that we would not get quality time alone to process our struggle as a couple. Ten months in the hospital of constant interruptions and no real quality time together wore on our relations as a couple. This is something I don’t feel like is talked about often.
“I was no longer able to see the people that were my support and encouragement on a regular basis. It also gave very little reprieve from the emotional rollercoaster or sleep deprivation that I experienced.”
What did you struggle with along the journey?
I struggled with feeling isolated from the world. Going from working full time and being free to attend weekly church services to staying at the hospital as Dariush’s primary caregiver meant I was spending five nights and every day of the week attending to his needs. I was no longer able to see the people that were my support and encouragement on a regular basis. It also gave very little reprieve from the emotional rollercoaster or sleep deprivation that I experienced.
“And books became an important part of our day. Nima and I both have a love of books. Our home is full of them. It was very important that Dariush knew how to respect and love books as we do.”
What did you become an "unexpected expert" in along the way?
Physical Therapy - Dariush was already seeing a therapist because Down Syndrome children typically suffer from low tone, leading to delayed fine motor-skills and speech development. Finding yourself in a small hospital room with an immune compromised child makes physical therapy very difficult. I had to think outside of the box on ways to continue to push Dariush on his good days.
We covered the floor with mats and blankets, used a small flat bucket as a seat. Brought a tub of toys from the home to help him pull out and put back in toys. My window bed was turned into a walking course to encourage him to hold the window seal while moving towards the toy at the far end. He had a walker that we encouraged him to take laps in the hallway, waving to other patients and the nursing staff. Some days I pulled more than he walked but by the end he had finished a 1/2 marathon and a 5-K all on his own.
And books became an important part of our day. Nima and I both have a love of books. Our home is full of them. It was very important that Dariush knew how to respect and love books as we do. What I didn’t realize is the amount of fine motor-skills it takes to pick a book, place it on your lap and flip through the pages. So each night and every bad day we just set near our makeshift bookshelf and let him pull his books down. We showered him the meaning of soft and gentle and how to try to lift the pages. I am so thankful for a simple exercise that we could do when he was feeling weak or had cords attached, restricting his movements.
“I would realize that lunch had passed and I had only consumed one cup of tea all day. Finding time to remember to take care of yourself when you are holding a sick child was very difficult for me to do. ”
What might people not understand about your experience?
Stress can indirectly affect your milk supply if you aren’t taking the time to eat or drink enough water or don’t have the time to nurse/pump because you are dealing with a stressful situation. Many mothers that I meet do not realize the amount of stress I was under and how it affected my production. As time went on it became very difficult to find moments to pump. I would realize that lunch had passed and I had only consumed one cup of tea all day. Finding time to remember to take care of yourself when you are holding a sick child was very difficult for me to do. I was able to produce some milk during most of his treatment but in the end we were “cutting” it with alternative milk. The added stress of some of my breast milk going missing also added to this. I found out that you cannot store milk in the shared fridge with your food because it is considered bodily fluid. I found out that you do have rights to take care of your own milk and that there were no regulations against having an ice chest in your room to oversee your milk. This just means that I had to take time twice a day to insure the ice was kept fresh and that any milk he drank needed to be reported to the nurses.
What you learned & how you found comfort
What or who brought you comfort in your journey?
I always had certain items that came from home every trip that made the room feel (1) more of our space. Books, pictures of family, Icons, my personal pillow and blanket, a crib rope form Dariush’s crib and a small box of toys. I also found a USB charged blender to help make smoothies for both Dariush and myself.
The nurse staff. There were several times they knew I didn’t have anyone to watch (2) Dariush and I just needed a moment of fresh air or a hot shower. They made these short moments available. The therapy of the cool air on my face or soap in my hair brought comfort and courage.
What or who brought your child comfort in their journey?
The volunteer programs at the hospital really helped. Our Chemo Pal was the perfect match for us. She brought something new with her each time, held Dariush during naps, drew pictures with him and even lingered to talk to me about our struggles and hopes. The Children’s Healing Art Project (CHAP) provided times to embrace our artistic side as a family. And MusicRX probably was Dariush’s favorite thing in the whole world. He light up every time they visited our room and throughout the week we would have musicians in the hallway. Dariush would wheel right up to them and soak up song after song.
What support did you need that you struggled to find?
We needed understanding and support from the medical staff regarding the need for fewer interruptions at night. It was very difficult having staff come in for vitals as soon as Dariush fell asleep. We asked for a set schedule and their willingness to always get his evening vitals before he fell asleep. Each new shift we had to request our needs and concerns on this matter. Some staff were understanding and found a good rhythm, others not so much.
“I wanted our room to feel like a peaceful place to heal”
What feeling was important to you to evoke in the hospital room?
I wanted our room to feel like a peaceful place to heal. It was very important for me to know that Dariush could retract into it if he felt overwhelmed or in pain. I also wanted the staff to know it was welcoming calm place for them when they visited. Our room was always picked up, just incase we had an emergency or the staff needed to hook him up to his lines while we napped.
How did you create that atmosphere?
Music was always on, most of the time it was tranquil classical music. I remember staff saying it was like a spa when they came in. Between the music and Dariush’s hugs they found energy to continue through the day. I also tried to keep the TV off as much as possible. I wanted Dariush to know he had my full attention. I wanted him to recognize the beautiful birds in the trees outside our window and the music he could dance to.
This desire for a peaceful place also meant that I needed to watch the emotional gauge coming from myself and Nima. If we were overwhelmed we communicated that we needed a volunteer to watch Dariush so that we could take a short walk to talk it out. It meant some nights I told Nima to forego coming to the hospital because Dariush’s empathic soul was at it’s limit.
“The hospital staff had a small cake made for Dariush and threw a small party for him in the play room. Although he wasn’t home, he was surrounded by his support team, singing Itsy-Bitsy Spider as we celebrated.”
What small gestures brought comfort that were unexpected?
The first that comes to mind came around Valentine's Day. We had planned a couples massage to help us both deal with some of our stress. Dariush was between treatments and we had a friend staying with us to help watch him. However, minutes before our appointment Dariush started to throw up. Nima sent me alone, very kind gesture on his part. Once the spa heard what we were going through they rescheduled, free of charge, to make sure we both could come together. This is one of their busiest time of the year, they lost out on money because our original time slot couldn’t be filled. The kindness they showed even when I hadn’t asked for it was so moving.
On Dariush’s 1st birthday we were at the hospital for round 2 or 3 [of chemotherapy]. The hospital staff had a small cake made for Dariush and threw a small party for him in the play room. Although he wasn’t home, he was surrounded by his support team, singing Itsy-Bitsy Spider as we celebrated. It was comforting to know he could still have a birthday, even when I couldn’t make a cake or buy him gifts.
There were a few times that other patients would draw pictures or give him presents. Seeing Dariush connecting with them was heartwarming. I remember a little boy letting Dariush chase his motorized car around. A little girl that would peak in our room and ask if he was well enough to walk with her. I remember seeing him reach for other babies as though to say I recognize your pain and I want to give you my love.
“I remember seeing him reach for other babies as though to say I recognize your pain and I want to give you my love.”
