Hospice

Hospice

If you lookup the meaning of this word the following would probably show up:

A program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care.

See the words terminally ill and a full-of-life 5-year-old child don’t go hand-in-hand. But unfortunately in the pediatric cancer community they do. And it is a fairly common occurrence too. Did you know that in the US, cancer is the number one cause of death by disease among children. Per the American Cancer Society about 12 % of the kids diagnosed with cancer do not make it to the five-year survival mark. So the word hospice is no stranger to this cruel world of pediatric cancer.

Today I’d like to focus on a this group of beautiful souls that help our children die peacefully. In my opinion they are doing Gods’s work on earth and are completely under appreciated for what they do. I’m talking about Zoey’s hospice nurses who helped us with her palliative care.

Zoey had that final MRI about 13 days before she passed away. We were completely shocked at the results, because at the time, my brave daughter was still able to walk, see, talk and pretty much eat anything she wanted. How could the tumor have grown so much without affecting her life drastically.

While I was total mess, my wise and practical husband knew what to do next. He called hospice the very next day and had them visit us. We had a very compassionate social worker and pediatric nurse come to our door step. I was so livid at Zoey’s dad. I couldn’t understand how he could give up on his child. I refused to even meet them the first time around. Zoey was still doing well given the circumstances and for me hospice meant the end. It meant that I had to actually talk to people about her dying and I wasn’t remotely prepared for that. Little did I know then that getting hospice involved early doesn’t mean you are giving up on your child. It means you are looking to make your princess the most comfortable you can, till the very end. See my husband understood that. He wouldn’t let his princess suffer even a little bit. (He was very protective of her).
Zoey’s hospice nurses were absolutely amazing. They visited Zoey everyday. They taught Zoey’s dad everything there is about medications to tackle the various symptoms that could arise. They told him about seizure management, pain management, etc. Luckily Zoey didn’t need much of these. She still had a few good days with us enjoying all of her favorite things with all of her favorite people ( her parents, grandparents, aunt, uncle and newborn baby brother). However during that last one week of her life, her health declined rapidly. Everyday she would be weaker than the prior. Her breaths would get slower. She seemed lethargic and slept quite a bit. Also she was in lot of pain and needed medication to manage it. Zoey’s dad would call the hospice nurse multiple times a day to get dosage instructions and any other help he needed. He was with her 24/7. I was so scared all the time. I was scared that she would go without our knowledge, maybe in her sleep. I still remember asking Karthik to call the hospice nurse in the middle of the night after we felt her breaths were very slow. Zoey’s nurse was at her bedside within an hour. Holding Zoey’s hand, talking to her and telling us Zoey is doing ok ( given the circumstances) . I remember being so  angry. I was angry that Zoey wasn’t even given the typical honeymoon period after radiation … that is a few months of normal life that most DIPG patients get. See we only got 12 weeks post diagnosis … so I was angry at everything and everyone. But my anger or my love for the child didnt matter at the time. It was about her and her comfort alone. And  her dad had the foresight to see it way before I could even think about it. After a few days of managing her at home, her dad and I decided to move Zoey to the hospital versus keeping her at home. We felt she needed medical help to be comfortable and not be in pain….. and also selfishly we wanted to be alone with her. See it had always been the three of us….Zoey , her Dada and I. At home we had other priorities that could take our time away from our girl ( like her new-born baby brother) and we felt dedicating all of our time to her would be the best. (Her baby brother was in good hands …..being cared for by his loving paternal and maternal grandparents, uncle and aunt.)

So we admitted her to the hospital on that Friday morning. She was still alert , talking and eating. She complained of pain so the nurses upped her pain medication. At home Zoey always slept in between her dad and I. So her nurses arranged for two beds to be placed side by side. That way her dad and I could be on either side of her ( just like home). They were wonderful. That evening she woke up from sleep and demanded ice cream for dinner. Her nurse rushed out and got her three cups of her favorite flavors. And my baby girl , my beautiful baby girl ate every drop of it. She had her grandparents , aunt and uncle visit her that evening with whom she managed to chat.

Later that night she seemed a bit agitated and had some difficulty breathing. Her nurse gave her some Ativan, after which she slept peacefully on me.
Before sleeping on me, Zoey asked me something that I will be etched in my soul forever. She asked me if I’d meet her in heaven. I cannot describe the feeling I felt. All I could mouth at the time was I’ll be there as soon as I can. She smiled and slept with her little Krishna idol next to her. She never woke up again. Neither her dad nor I had ever spoken to her about heaven. She definitely knew she was going there. I wonder who was speaking to her in her sleep and preparing her for the inevitable ? There is so much we don’t know about this life and its journey and the afterlife.

Though Zoey went into coma that night her heart kept beating strongly for nearly 36 more hours. Her nurses were beyond amazing. They kept checking on us every hour for the next day and 1/2. One of them even sat down with me told me something every parent would want to hear. She said in her 25 years of being a oncology nurse, she had never seen a child like Zoey who managed to be so alert, expressive and full of life till the very end. The pride I felt for my child hearing those words is just indescribable. In my opinion she did defeat DIPG, just not in the way we would want it to be.

They encouraged us to speak to Zoey because hearing is the last thing to go. So we sat there holding our child’s hand and kept telling her we loved her repeatedly. Her nurse even helped me give her a final bath the next day. She brought a nice tub of warm water and towels. This memory is something I cherish …. yes my heart was breaking into a million pieces and all I could think of Zoey enjoying her warm sponge bath. ( Zoey loved playing in water).
Even now over 4 years later, I remember every minute of Zoey’s last few days…… and I can’t thank Zoey’s nurses enough for everything they did for her and us at the time.
They definitely are doing God’s work on earth. And they do it day after day, with a constant smile on their face. Isn’t that amazing ?

This post got me thinking. Why didn’t I share these memories of Zoey’s last few days earlier … why now after 4 years ….. I guess my mind may have blocked it because a part of me only wanted to hold on to the happy memories of my girl. But then I realized I don’t want forget anything about her. Be it the good, the bad or the ugly. Everything about her will always be beautiful. Her first cry as soon as she entered this world, or her loud cry in pain when that tumor was ravaging her brain, her first dance as a toddler or her last dance on her bed singing “bring down you boo-boo”. Yes absolutely everything about her was and continues to be beautiful to my eyes.

I love you my first-born baby girl. To the moon and back (as always).

The last time she slept on me.

The last time she slept on me.

Shall we dance

Shall we dance

“Shall we dance Amma?” I get asked very politely by my littlest. He is just over 2.5 years and is an extremely cute dancer. Any music that plays on TV or anywhere else, he starts dancing. Those deep eyes look at you expectantly, and those tiny hands reach out to you forcing you to instantly get up and move with him. So I get up, hold his hands and we both do a silly dance to the Mickey Mouse Club House theme song. My older boy is giggling away, amused by his little brother and mom dancing to his favorite show. ( He too loves to dance, but he really needs to be in the mood and also needs some good beats). The younger one dances to anything. As we finish our little number, I can’t help but reflect on the past when I used to dance with my baby girl.

My baby girl who loved dancing. Any music playing anywhere, that bold child would get up and dance. Very similar to my littlest boy. I remember that one-year-old who had just learned to walk, moving her tiny self to nursery rhymes. I remember her falling down and getting up saying in a baby voice “Zoey fell down”. I remember that 3-year-old girl dancing to live music at a random restaurant, while we were vacationing in SC. I see her doing ballet to Swan-Lake during her Pre-K graduation ceremony in her beautiful pink tutu. That night not only did she dance, she participated in a skit, and told the audience she wanted to become a paleontologist-ballerina. Watching her on stage that night I thought, I couldn’t be prouder ….. how she proved me wrong ! She not only danced on stage, but danced her way through cancer. She’d dance to the song “Hey Krishna ” every single morning before heading out for her radiation session. And she was quirky that way. She did ballet moves to “Mahishasura Mardini”. People who know this song definitely know it’s nothing like ballet music. I watch that video of her and all I can say “Only my Zoey would think of something like that 😃”. In the last week of her life she couldn’t stand by herself so she’d sit up in bed and insist on moving her frail body with a huge smile on her face. Oh boy the spirit she had. As I watch her videos from that last week and I wonder how she did it. Where was she getting all that energy ? Her brain was shutting down her body slowly ….but I guess that cancer couldn’t touch her heart and undying spirit. Oh I miss that spirit. That force , that life ….my life . My Zoey. I miss her. Period.

So now you know how dancing with my child was a big part of my life. Looks like the universe has handed me another opportunity to do the same. These days when I get asked by my littlest, I jump in without thinking twice. Because if I am lucky he will soon grow out of this phase, and not want to dance with his mom 😃. Yes it isn’t like dancing with my Zoey. How can it be ? There can only be one and only one Zoey in my life. She is my number one girl forever. She is irreplaceable. However dancing with my boys is still special. It will be something I cherish in the years to come 🙂

Dancing Zoey

Dancing Zoey

Zoey forcing me to dance 😃

Zoey forcing me to dance 😃

Hari and I dancing in Disney

Hari and I dancing in Disney