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.

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23 thoughts on “Hospice

  1. One of the cutest and most beautiful little girl tht I have seen is Zoey! and one of the strongest mom I have know is you. You were lucky to have had the opportunity to be a mom to such a strong , little warrior. Zoey is surely dancing with lord Krishna in heaven. DIPG you suck!!!!!!

  2. I don’t know you Suman, but I saw this on my timeline cause a mutual friend commented on your post. What a wonderful write up about your little angel, I have a big lump on my throat now. I’m sure she is in a better place now. I hope you are doing ok, may her loving memories comfort you. Zoey’s story puts good perspective on what’s important in life. May god bless you and your family. May your future be only filled with peace and happiness.
    Warm regards,
    Shuba

  3. So well written Suman . I had tears rolling down while reading this. Zoey was really special and thanks for sharing her memories. Hugs ()

  4. Suman, your narration is so much touchy and emotional that I could not stop shedding tears. Zoey’s departure from her home on that day, Friday and her last look of all her dearest; is still in my eyes. Brave girl and blessed girl at the age of 5 was able to see, play and join her lord KRISHNA leaving all of us behind to do our left over KARMAS in this world of “Maya”
    You are the bravest of all mothers , I know off. please live happily with your two little” kutties” and leave evry thing else to Kind GOD.
    your loving father

  5. Hi Suman,

    I do not know you personally but I have followed your blog for the past couple of months. I saw your comments on Anya Anand’s FB page and stumbled upon your blog which also led me to the lucile packard foundation.Reading this post left me literally in tears.Zooey must have been so proud and happy for the lovely parents she got and vice versa. I have a 1 year old, he actually turned 1 yesterday and one of the things I did as a dad before hitting the bed last night was put in a very small amount for the foundation you have set up in memory of Zooey. DIPG can happen to anyone and the very least all of us can/should do is to make sure researchers have enough funding to find a cure for this monster.

    God Bless your wonderful family. We live in New Jersey as well. Let us know if there is any DIPG awareness event that you attend/host. I would be happy to volunteer and do my bit.

    P.S: Zooey will continue to stay alive through your blog. Keep writing

    • Thank you for your donation to Zoey’s DIPG research fund at Stanford. This means a lot to us. My husband and I have been busy with our two toddlers and our relocation back to New Jersey last year. We haven’t focused on Dipg awareness as much as we would like to. Maybe this is better year. If we ever do an event in New Jersey will keep you posted via zoeys page. Thank you again. And a very happy first birthday to your darling son.
      Suman
      ( zoeys mom)

      • Thank you for your wishes.

        You are most welcome. My apologies for getting your daughter’s name wrong on every occasion. Zoey it is 🙂 and I typed Zooey every time.

        Looking forward to reading more about Zoey. Take care.

  6. Suman, I do not know you but have been following your blog for a few months. What a brave women you are! I have no words to say and really appreciate you for the deep understanding of life. What a little miracle Zoey is. I cannot describe how I feel. Like the above commenter said Zoey must have been proud of you and you should be proud of her! I strongly believe that she is the little Krishna. If not, how could a 5 year old ask you whether you will meet her in heaven right before she was going to go. I believe in afterlife and I saw your post on medium too. Wherever she is, she is with you both and her little brothers. A yogi once told me that depending upon on the intensity the people who left this “Jada Sariram” will live in a “Sushma Sariram” and will show you signs and presence in different ways. I have seen my dad in that way. So I am sure Zoey is with you and watching her little brothers. Give a big hug to those two boys!

  7. Dear Suman,

    I have been following your blog for several months. You write beautifully and simply.
    I have read each of your post several times. But realized that you had not shared the last few days of Zoey’s life so far. Obviously, it must have been very difficult to pen it down. I thank you for your courage! By opening up about your struggles, DIPG parents like you are doing so much to raise awareness about this cancer..

  8. Hi Suman,

    i check on your blog so often just to see if there is anything about Zoey…oh man she is such a darling….I think of her everyday . I have a five year old daughter and every time she does something special, i would think of Zoey and your feeling as a mom….beilve it or not she is always in my mind…God bless your family…

  9. Suman,

    I don’t know you or Zoey and I came across your blog just about 4 days ago.
    I must say, I haven’t been able to stop my tears every time I read your posts. Perhaps because I have a sweet little first born girl of my own and she means the world to me! I can sense your pain from your blogs and I must say, you are a very brave mother. And Zoey was braver. I have seen her video on the “Cure For Zoey” facebook page several times now and I have a whole new level of despise for DIPG for taking away such beautiful babies. Zoey has been in my thoughts ever since.

    Your posts have made me hug my daughter more and tighter… to tell her I love her more often, to stop complaining about her petty tantrums and to soak in every seemingly normal moment.

    Thanks for sharing!

  10. Dear Zoey Mom and Dad,

    I came across your page as I was searching to know about DIPG. Read through all of your blogs. They are both heart wrenching as well as inspiring. Lot of moments to cherish Zoey’s life. Nothing I say can bring any comfort but all I can say is your blog gave me different perspective to life and appreciate little bit more what we have. Big hugs to you, zoey’s dad, her brothers and Zoey herself. Thanks for the blogs and the work you do. I will bookmark the page continue to read and support in whatever little ways I can.

    Thanks
    Prem

  11. Dear Zoey’s mom,
    Your little Zoey looked like an angel.DIpg is such a monster to take away such beautiful cuties away from their parents. I lost my mom to Cancer but losing a child to cancer is the most toughest of all. You have been so brave, I am sure Zoey must be so proud of you wherever she is. My prayers and well wishes to your entire family. God bless.

    I will definitely do my part and donate to
    Zoey’s DIPG Research fund.

    Savitha

  12. Suman , children are the purest form of God . Every soul on Earth has a purpose and hence a path to lead in life . Zoey’s one of the purpose was to distribute unconditional love …to her parents , grandparents , cutie baby Anay , her Anusha Akka , her Uncle n Aunts , her friends , Teachers and also show the path to reach God . She has touched our soul and I am proud member of this family to have such a great soul among us . Till we meet again Zoey ….

  13. Hi Suman today out of the blue I remembered vidya & u
    So decided to look in my old FB account which I have stoped using. When I saw ur pic with ur 2 handsome sons I remembered about I having a daughter it I was confused if I was right. But after going through your post I came to know about Zoey your sweet beautiful daughter my niece because u r like my sister.
    We had spent our childhood together for some years.
    I am really sorry to hear about Zoey but she & her mom were very brave. I can understand your lose.
    All that you have written is very beautiful & heart breaking. Zoey had very caring strong parents who love Zoey a lot forver & ever. Take care God Bless you all.

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