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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September: Childhood Cancer Awareness Month

The month of September is here. For most families, September is all about sending their kids back to school, the end of summer and start of a new academic year. It’s about getting back to a routine that will probably last 10 months till it is summer again. It’s about getting the kids ready for school in the mornings, soccer practice after school or ballet or music lessons in the evenings.

But for families affected by pediatric cancer September is known to be the Childhood Cancer Awareness month. What does the term childhood cancer awareness mean to these families? Unfortunately I know exactly what it means….it’s been a year now and I will be aware of it for the rest of my life.

Until last September, I never gave pediatric cancer a second thought. Yes I was aware of pediatric cancer but that awareness seldom resulted in any tangible action…maybe because it did not affect me and my family directly. However all that changed completely on September 1 2012 , when our beautiful 5 year old Zoey was diagnosed with a rare but aggressive brain cancer called Diffuse Intrinsic Pontine Glioma (DIPG).

I still remember that day very clearly. Zoey had an MRI around 3 pm on that Saturday, and we had been waiting for the results to come in. She had been totally normal apart from the double vision and a bit of clumsiness when walking. These symptoms had manifested themselves quite suddenly in a matter of weeks and so we had demanded an MRI at her pediatrician’s office the previous day. The pediatric neuro-oncologist came to see us around 6 pm that evening. He took us to small room and made us take a seat, especially since I was 28 weeks pregnant with our son. He then showed us our daughter’s MRI pictures and told us the worst possible news that any parent could receive. I couldn’t look at the pictures at the time. We were told she has a brain tumor called DIPG and she had about 3 to 6 months without radiation and about 6 to 9 months with radiation. Surgery was out of question and chemo was not known to work on this type of aggressive brain cancer. His words loud and clear ‘take her home and enjoy the remaining time with her’. I couldn’t believe my ears. I was hoping that he would somehow say it was a mistake and he was seeing someone else’s MRI report. But that did not happen. We went back to the hospital room where Zoey was busy chatting away with her grandparents and the nurse. I remember thinking, how could she be so sick and we never knew a thing before. She was a normal 5 year old who was excited about starting kindergarten the following week. How could she have a tumor in her brain?

DIPG has a zero percent survival rate. Yes ZERO. It has no known cause and definitely has no cure. And it has been like this for over 50 years. About 200 to 300 children get diagnosed in the US every year and almost all of them pass away anywhere between 2 weeks to 12 months from diagnosis. The reason it has no cure today is primarily due to lack of funding needed for the research. Only 4 percent of total cancer funding goes to pediatric cancer…out of which DIPG gets next to nothing. Pharmaceutical companies do not invest in the development of drugs and research for cancers like DIPG. Why? Because it just isn’t that profitable as compared to investing in drugs for cancers in adults. The numbers don’t make sense to them.

Irrespective of the month of the year, yes, I am well aware of pediatric cancer. I am aware that our girl passed away in our arms, 12 weeks after diagnosis because we couldn’t offer her any treatment. I am aware of the finite number of videos and pictures of my sweet baby girl that I will be watching over and over again, for the rest of my life. I am aware of the sadness and grief that completely takes you over almost every day and sometimes several times a day. I am aware that Zoey’s baby brother will never know his sister that way we did. He will hear about her and we will show him the videos of her singing to him, but it will never ever be the same. So I am well AWARE and hope no other parent has to go through the despair we did last year.

Since September is here and we are talking about pediatric cancer awareness, I urge you to consider doing something more for these little kids. Maybe by making a monetary donation for cancer research/treatment, or palliative care, or by participating in a race…or by sending a card or gift to a child suffering from cancer. Ask these families how you can help. You will be amazed at how your little gesture and show of support will help them survive the nightmare that they have been forced to go through.

Lastly, if you haven’t done it already, please consider giving to DIPG research at Stanford (Zoey’s DIPG research fund) :

https://my.supportlpch.org/fundraise?fcid=448147

Here is a picture of my Zoey just before we became AWARE of pediatric cancer :

Zoey with her new camera at the aquarium

Link to Zoey’s dad’s interview about DIPG.

Pediatric Cancer Awareness

Why is so little being done for childhood cancer ?

On September 1 2012 our world came to a grinding halt. We were told that our beautiful, ever so happy and healthy looking girl had a massive brain tumor in the worst possible location. Because it was embedded right in the centre of her brain stem (pons) we couldn’t go in and take it out. It could cause more harm or even permanent coma or death and no neurosurgeon in his right mind, would be willing to try to remove it.

Just like that our entire world turned upside down. Before that day, I never gave pediatric cancer a second thought. Yes I knew it happens to children, I knew of leukemia happening to children, I knew of a few successful stories of kids that beat leukemia, but was not aware of any child that had died of cancer. And malignant brain tumors , who knew little happy kids could get it and even die from it. A few years ago, I remember watching an advertisement from St Jude’s on TV showing little kids, bald from chemo treatments or radiation. I could not bear to see them and remember feeling very sorry for these kids and their families. Who knew that a few years later my child would be that child with cancer.
Well did I do anything to help out, raise awareness etc after I saw that AD on TV. No I did not. Maybe because subconsciously I thought that my darling girl who always ate organic fruits , vegetables and played outside in fresh air every single day could never get cancer. If I blocked it from my mind, it certainly wouldn’t happen to my child.

Now I am more than aware that pediatric cancer does not discriminate. It can happen to any child and my child was one among several hundred that it picks on every year. Why cancer picked her and our little family is something I will not delve into here…

So why is it that we know so little about childhood cancer.
Is it because we don’t want to know about little innocent kids getting sick and dying WAY before their time. Or is it because it’s just too sad. So why is so little being done for childhood cancer. Aren’t these children our future. Then why has FDA approved only 1 drug for childhood-cancer in last 20 years ? The answer is awareness in general public. Since there is very little awareness , it automatically translates to minimal funding for research. We hear about the Susan g komen Race for the cure for breast cancer awareness every year, year after year. Have you heard about any campaign being done at such a large scale for childhood cancer ? Isn’t it time that changed?

My Zoey passed away , not because of an accident, or negligence, or abuse etc. She passed away because there were no treatment options available. She passed away because she did not have any ammunition to fight the tumor (or boo-boo as she called it) in her brain.

Cancer picked on my girl and our life will never ever be the same. Our family will be doing everything we can to raise awareness and funding for research, that is so desperately needed. Every chance I get, I will share her story and the research fund created in her memory. Because every dollar we receive is a step in the right direction.
We are very grateful for all the support and donations we have already received from friends, family, and complete strangers. Please continue to help us in our fight and share her story with your friends , family etc whenever you possibly can. This means the world to us.

http://give.supportlpch.org/site/TR?pg=fund&fr_id=1040&pxfid=2713

Here is a picture of her all ready to go to her favorite ballet class in fall of 2011. Had cancer not picked her, she would still be enjoying her ballet lessons ….

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Thanks again,
Suman