16 March, 2015

My story of Hope -II

(For those of you who came by from the previous post My story of Hope-I, I didn't intend to make this 2-part series. The post turned out to be lengthier than I thought it would be and then it didn't seem fair not to say the whole story. So here I am, to tie up the lose ends.)

The year was 2014 and the day was the 9th day of January. As I lay tipsy from the drugs the doctors were trying to stitch up some tear that happened during delivery. That turned out to be a tough task and they had to take me to the OR to do the rest. Only half my body was numb the other continued to be 'high' and hopeful.

I was only late that eveing that I was wheeled into the NICU to meet the baby whom I had known for over 38 weeks but hadn't gotten to have a good look at. And that was all that I got to do that day - just look at her. The baby continued to be there for close to a week after I was discharged from the hospital.

Some tough days they were, both physically and emotionally. No mother should have to go back home and not take her new born home with her. Sometimes that's just how it is and it can barely be helped. The following week was all about driving all the way to stay beside the little one watch her sleep and hold her without disturbing the things that were strapped her; to monitor her heart and temperature and all of that.

It's weird how all the physical pain from the delivery and all the tear and the stitches seemed so trivial when compared to the pain of leaving baby at the hospital day after day. All I wanted was to see the end of our long NICU days, take her home and just enjoy her.

I was wondering how things could go so wrong. Every step of the way -- in between the stress of it all and the break downs, I held on to hope but matters were only getting worse and more traumatic. Some tests were being done and more were being ordered. The pieces were falling into place  so very slowly making it all so painful. The was no sign of the Pericardial Effusion, now. The VSDS were there but that's not the worst part of the story. A part of her heart's wall was still thick. The liver looked normal in size, now BUT there was a mass in there, instead.

So more tests. In the middle of all this, the resident doctor came to have a talk with us. She told us that the baby's Alpha Feta Protein was way higher than that of  a healthy human adult and that much in a baby only meant that she had cancer.

I felt my world crashing! It literally felt like I was standing and everything around me had gone down in a quake. That is exactly how it felt.

I remember telling that doctor, no (that I didn't want to go to another room to get myself together). I remember walking to the baby picking her up and holding her and letting down streams of tears. I wasn't even bothered about the wires. I think something beeped and one of the nurses come and turned off the monitoring devices so that the noise would cease. For a while I could think of nothing and no one; only baby and me. I didn't even want to talk to hubby. It took me some more time to realise that that verdict must have come as a big blow to him as well.

A little later an elderly nurse came by to talk about other cases and to tell us about the things that could be done and about chemo, and all that; things I didn't want to hear at all. That was no consolation at all and I'm surprised I didn't snap at her.

A couple of hours or so later, an oncologist came running in to talk to us. And told us that not all that we heard was final. True her AFP was high.  But (LISTEN to this, it might be useful to you or somebody you know) that the baby produces this in in the fetal stage and the large amount that is seen when the baby is born, is usually lost in the first 6 months or so after birth. That again was not exactly comforting but there was a small ray of hope.

He advised a biopsy, just to be sure. This time there was no thinking. We said yes to it and hoped for the best. But that wasn't easy either. The next few days continued to be --needless to say -- tough.

Here I'll cut the story short and tell you the days were about more blood tests, a scan and a biopsy on a 5 day old baby. I won't talk about the emotions there, as you can guess what it all must have been like.

Again fastforward to another couple of days, that same oncologist came running into the NICU, this time actually sprinting in to tell us the biopsy results were out and that, that mass was benign. It sure was good news, probably the best we had heard in a while. I remember hubby put aside his inhibitions and gave the small-built specialist a bear hug. I remember I stood there stunned and showing absolutely no emotions. I should have cried with joy; anybody in my place would have done that, I'm guessing. I couldn't. I didn't want to rejoice. Yet. I was too used to too many ups and downs in the months running up to that day, that it just seemed impossible for it to be the end of all this misery.

In my mind I was saying, 'Ok, so this is over. What next?'

Anyway, some things had to be watched for a couple of days, according to the doctors. And then all the doctors involved, the specialists included, gave the nod and we finally got to take baby home. That day, I tell you -- I was in high spirits.

And that is not the end of the story. The 'echos' and the scans and innumerable blood tests were ordered and done. And just like how it was during the pregnancy, things were looking OK at one visit and looking not so good in the next one. It looked like this emotional roller coaster just would not stop.

We were back in India (from the US ) when baby was 5 months old and did a follow-up at 6 months. The new doctors studied her papers and did some tests, very minimal and only the really necessary ones and her blood test continued to show a decrease in AFP.

Last month, after she turned one, we returned for follow ups. Her heart looks pretty good. The thick part seems to have evened out with the growth of her organ. There are a couple of VSDs to close. But that was the least of our worries. And the for the mass -- they don't see it now, even after two different scans. That is supposed to be good news, but again, I don't want to rejoice, yet. A disappearance was not something we were told to expect. I hope the next follow up will give me the best news ever.

For now, I live in hope.


P.S. Have I told what we call this precious little girl? I would have named her Precious if it didn't sound so out of place where I come from. :) We call her what in-the-language-we-talk-at-home also means 'hope' -- Prateeksha.


*****

I didn't know if I would ever be ready to tell this story. But 'Housing' put before me a prompt for which I had a story and this is it. 

At this point, I would like to put down a big Thank You to every body who gave me the strength and motivation to go on with optimism, and to look up.
A big Thank You to my bestie Sri who is the reason I'm still sane today. Thank you for being there each and every time. Thank you feeling my pain with me. Thank you for being a big part of my story. Love you so much, Puttus.Thank you Achu and Lambu for being my 'sisters-in-pregnancy' and sharing your notes with me. More than that, thank you for all the moral support. Our being together on this pregnancy journey made it easier for me to confide in you. You girls said just the right things. I was afraid of the wrong questions that people would ask if I shared this with them.  And its easier to cope this way. ;) A big sorry to those I pulled away from. It was tough talking about anything at all, leave alone this stressful pregnancy. Thank you to V chechi for giving me the courage to go ahead and do the Amniocentesis. Thank you (B) chechi, Sheeba and Josoota for the prayers. Thank you Meenu for checking in on me from time to time thanks to your mom, the 'doctor-aunty' for talking to the experts and trying to find some answers and for sending her love and good wishes. Thank you Amma for coming over an making our lives so much easier and taking care of our now- older one. I don't know what we would have done without you there to help.And most of all, a big, big, big Thank you to my Sonny Boy who was so kind to let us disappear every morning and return way past his bedtime. You were so kind and so co-operative in those really-hard days. When you get to read this, I want you to know that -- You've been the best boy you could be. Now you can go back to driving me crazy, which you have already started doing. :)

35 comments:

  1. You have gone through a lot!
    I am glad all izzz well now :)

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    1. There seemed to be no end and I was emotionally drained.
      It is all pretty good now. Thank you Indrani. :)

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  2. Hats off to you.. as they all is Well that ends well..

    my best wishes always

    Bikram's

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    1. Hey Bik,
      Thank you.
      You bet!

      Thank you for your well wishes; when YOU say that, I know you mean it. :) Thanks a whole ton.
      You keep rocking, ok :)

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  3. Wishing you and Prateeksha the very best! Loved the story as well as your grit and determination...

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    1. Thank you so much, Sunaina.
      Nice to see you here.

      Thanks again. :)

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  4. Today I got to read both of the parts of your overwhelming trial and tryst with your baby, and, may I say, fate? That was a close brush. Somehow, pregnancy and motherhood are a reminder it is the woman who is a complete entity, not a man.

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    1. Yeah, pretty close, USP.
      And trying times indeed. I hope the worst is over.

      Really, you think so? I'm not so sure. :)

      Thank you for visiting, USP. That was a long story, wasn't it? It's always nice to hear from you; and an honour too. I hope all is well with you.

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  5. I just read both parts in one go and its scaringly traumatic to say the least...am unable to imagine what it must have been like!
    Just SO Glad to know she is fine ..you all are fine, hale and healthy ...You have written a well deserved thank-you note in the end. I appreciate all those people who stood by you, supported you in one sense or other ...(forgive me this liberty but I 'know; the value Dee.. )
    ..Its a TRUE look up story.
    Tons of love and blessings to them both :)

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    1. Both in one go? I'm guessing that was a little too much for you, Kokila. I'm sure you are. Thank you so, so much for the empathy. I know you totally understand.
      And thank you for feeling thankful to those who stood by us.
      C'mon, you can take that liberty.

      Thank you, again. And hugs to you, Kokila.

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  6. My God! My heart felt so heavy just reading through both the posts and I cant imagine what you both must have gone through! Hats off to your courage. You've gone through a lot, only good things are to come from now on :-)

    My prayers, wishes and hugs to you and Prateeksha, the precious one :-)

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    1. Hi Ashwini,
      Nice to see you here on this blog. Thank you for visiting and leaving some kind words for me. Thank you so much for wishing us the best and for your prayers. Thanks a whole lot.

      Writing this post was difficult. But then, it was cathartic too. :)

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  7. hi there, I just read your incredibly difficult story. im so glad all turned out fine. I know what you mean when you say you will not rejoice yet... my daughter was diagnosed with cancer at 17 months of age.. she has gone through major surgery twice plus chemo. the tumour has grown back twice but there has not been any new growth for 2 years- yet I remain cautious... she is a very healthy, happy, well-adjusted 4 year old! hope your daughter remains healthy and happy!

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    1. Hey Jandi,
      Nice to see you here on this blog.
      Yeah, I see that you know exactly what I mean. It's become one of my worst fears and I'm sure it is the same with you. Nice to know things have been looking good. I hope it stays that way. Sending you and your little ones a whole lot of well-wishes.
      Hugs to you Jandi, lots of it!!
      Come, now let's go catch some light ;) (Isn't that a wonderful meme. :))

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  8. All is well that ends well, i hope everything is fine and will be so henceforth.

    Is she nick-named Precious...at least nobody would have minded that?

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    1. I hope so too, Alok.
      That's not really her official nickname but we do find ourselves using Precious as an adjective, every now and then. :)

      Hey Alok,
      Thank you for visiting this blog. I seem to have stopped promoting this blog long ago. I dunno why. So nice to see you here. Thank you for reading and thank you for your kind words. You two have a fab week, ok. :)

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  9. Hats off to you.. even writing all this experience takes a lot of courage.. I wonder how did you endure it in real.. you're a very strong woman, I must say. And I'm so happy for the little fighter, Prateeksha.. I wish she be in the best of health forever :) God Bless to you and your family :)

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    1. Hey Deeshani,
      Welcome here. I'm still wondering if writing about it all was right or wrong. I know it's been a few months...
      Writing it was painful and I'm not sure it was as cathartic as it was supposed to be. :)
      Actually, those months were a test of how strong I could be and I don't think I scored too well. I found myself pulling away for a bit and going into denial sometimes.
      Thank you so very much, Deeshani for your kind words and good wishes. Hugs to you. :)

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  10. God bless you!
    Immanuel
    (Catholic blogwalking)

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  11. Goodness me!! I didn't know you were going through all this, Divya. Despite the pain and upheaval, it's commendable how you remained strong and courageous in the face of such crisis and uncertainties. Kudos girl!
    I am happy to know that our little Prateeksha is doing well. She's another brave girl, I must say! Sending best wishes, love and prayers...hugz

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    1. Aww Panchali di <3

      Thank you so much for leaving your mark on this post. I don't if it was being strong or being in denial. ;) Anyway the darkest days are over, hopefully. :)

      She is a handful -- so full of life and very mischievous (she's beat her brother at that ;) ). Thanks again, Panchali di. Much love to you too.

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  12. Goodness your family has been through so much DN , I was holding my breath towards the end there wishing for a positive outcome and thankfully it's looking that way oui? Am I right in thinking Prateeksha is lucky to have a wonderful older brother to grow up with, she'll be a very lucky little girl. Here's sending many positive vibes from Perth.

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    1. That's Grace? :)
      Thank you so, so much for your lovely words and well wishes, Grace. Yeah, I believe that too -- that we're almost out of the woods. :)
      Thank you so very much for all the goodness you sent this way.
      Have a great week. :)

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  13. Right Tom, we all need to live in hope.
    Have a great week. :)

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  14. moved!
    very touching post
    hope is all we have at the end of it all, i guess

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    1. Hi Sujatha,
      Long, long time huh! :)
      Thank you for coming by and leaving a message for me. You should get back to blogging. :)

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    2. Hehe... I have.... after four years

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  15. Well written and Hope! ~ Sending you and Hope lots of healing energy hugs and she is going to be fine ~ She is blessed with you for a Mom ~ xox

    Happy Week to you ~ ^_^

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    1. Hi Carol, Nice to see you here. Thank you so, so much. I'm touched by your words. :)

      You have a great week too. :)

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  16. Wow! Heart wrenching. When we are going through tough times it is important to have hope. May all turn out well for you and your family. xx

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  17. Everything will be fine. Do not worry.

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