Wednesday, March 7, 2012

When You're Curious.... Like Curious George!


This is where I am right now; sitting in bed with Curious George, eating carrots in my new favorite bowl (bought at a thrift store for $2). I ended up here after having a total and complete melt down over some over spicy cream of broccoli soup. Yup. Soup. I guess it was inevitable that I would end up here. Somehow the day just wasn't going quite right, and there were a few times I almost went over the edge. The day was doomed no matter what, so I guess its good I got it out at some point, albeit over what was supposed to be dinner. 
Today started ok. We had to go to the Jimmy Fund to get Saoirse's genetic and autopsy results. We were dreading the trip. It's hard to even drive down the road (and I wasn't the one driving). We got there and met with Judy (our social worker), Esther (Dr. Obeng) and Susie (Dr. Shusterman). Good news #1: Saoirse had no genetic predisposition to NB! This was the biggest stressor for us. With the way our family history was coming together and drawing up, we were very concerned that she inherited some genetic mutations from us that made her more susceptible to NB. This is not the case. The best part of this news is that it means that we don't have to worry (as much) about our future kids having a higher chance of getting NB. Good news #2: We knew that Saoirse's tumor was very aggressive, and in the end had presented in ways not common to the disease. When we asked for the autopsy to be done, we expressed that we wanted her to help other kids by letting doctors learn from her cells and her disease, so that hopefully they can find a way to save these kids. We found out today that blood samples from her carrying her tumor cells were sent to a researcher in Texas who is compiling and saving (growing and freezing) NB cell lines for further study and future testing. Her cells will be used to test new and future drugs to see if they can be a good fit for kids with resistant and aggressive disease! She is already helping to save more kids! We are very proud of this. We did the autopsy so she could help them learn from her disease, and help to further the research needed to save more kids and find a cure for this killer. We feel like she has a huge chance of doing that now. 
The final thing we found out from the doctors is that the reason for her labored breathing and horrible reaction to the intubation was that NB had taken over her lungs. Like her liver, there were no large masses of solid tumor, rather the NB cells had taken over the lung cells and dispersed throughout. Her doctors were shocked, and both got to get a good look at her lung tissue under the microscope (we allowed the morgue to keep her organs for further study). They have learned so much from her, and hopefully they can use it to help more kids down the line. Somehow this brings closure to the way she died. We were so concerned that it had been a mistake that had lead to her lungs no longer functioning, but we now know this was not the case. Her lungs were too heavy with tumor to work. No amount of pressure from a pump was going to keep them delivering oxygen to her body. They just weren't working. Her liver was weighed and rather than the expected 300 grams or so, it was over 1600g. That's how much tumor was there. I feel horrible for the amount of pain that she must have been in. She knew she couldn't do it anymore. She just wanted to rest. "All done" she said, "sleep." Sometimes I wish we had just taken her off all the machines and let her go on her own. But we wouldn't have won either way. Either way we would have regretted as much as the other. I just wish I had held her hand when she went. 
I'm getting my port out tomorrow. As I was sitting her sobbing I told Mike I didn't want to go. It's not that I don't want this stupid thing out of my chest. I guess I don't want to be better. It's not fair that I get to be better and she didn't get that. She never got to have her line taken out. She never got to have a super fun splashy bath. She never got to have an "All Done" party. She only got one Christmas, one birthday. She didn't get to tell her story in a college essay to help her get a scholarship. She didn't get to make her own friends, pick out her own clothes, make her own lunch, walk the dog by herself. She'll never be able to stick up for her siblings, or tell them how to be cool. I hate that they will never get to know her. I wish that she could have had the simple disease, that she could have been the one who was easy peasy, and done after 6 months. I would have taken all her pain. All her struggling. All her suffering. I would have been miserable for her for as long as needed. I am her mother. And she is my baby. 
I am more determined than ever to put up a fight for the real cure for NB - finding what in the environment is helping it grow. I am determined to work on the other side of treating cancer. Food, water, exposures, stresses - I have to spend some time and effort on bringing awareness to the things that are causing this horrible disease. Funding needs to be given to that work, and those ideas too. If we could find how keep NB from growing in the first place, and help the body fight it off on its own, like its supposed to, we could keep these kids from both the horrors of the disease and the horrors of treatment. These kids could get their childhood back. That has to be the goal. Why can't I be the one to get us there? 

17 comments:

  1. Wow! What a hard day for you guys. I am terribly sorry and yet I hope it brought some closure. Meaning... you know now that you really did all you could for her. Her poor little body just could not hold on any more --I pray for a cure for this disease. I am so flipping (i want to use the other word)sorry that Saiorse and 1000's of other children suffer from cancer and other diseases. It is not fair and I can't imagine the pain you, as parents, must feel. Now, as for you Kezia DO NOT FEEL GUILTY for getting your port out tomorrow. You need to be better and you DESERVE to be better. AND you WILL be a MOMMY again (here) - Sairose was sent here for a purpose and I honestly believe that now. Before I learned about her and your story I did not believe in much outside of this life. Her eyes, and those of other children have made me believe in something bigger and made me want to be a better person and just help people more. It is hard for me to explain. Anyway, the point is- it is ok for you to be healthy now and she would want that for you. Your future children need that too. I hope someday I get to meet you guys in person so I can tell you in person how much you have changed my life and my babies lives.

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  2. I read your posts in my room, away from the distractions of my crazy life...and in silence and tears, I'm humbled every time. I hurt for you. I love your daughter (still), as though she were my very own. I hold you and your family in my deepest, most intimate conversations and prayers with GOD. I pray that every power, comfort, provision, and blessing from Heaven will rain down on your family for every generation to come. With you, I celebrate the life of your precious little one, because she IS helping to save others. Thank you for your story. It takes me away from my own horrible season in life, and it allows me (even for a minute) to focus on something beautiful :)

    Love,

    Angielic

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  3. I'm wishing your family love, peace and strength.

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  4. As I sit here in a puddle I am in awe of your strength. The agony of this post takes me to my core as a mother. You amaze me and I love you. You have given an incredible gift to research and the lives of so many children. I wish that I could give you the peace that you so deserve. Saoirse was a pioneer for all NB babies. Hugs!

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  5. It´s hard to say something since it looks to easy for me from this side of the computer. If for me is hard to not be able to keep cheering for Saoirse as I used to do, searching for news of her and you and the progress of you both, I can say I can´t even imagine how it is to be at your place. But I am happy that you are alive and fighting. I am glad to see you posting and making awareness. It is not fair for Saoirse that she didn´t get to go through life, it is not fair to you that you didn´t get to see her growing up. But one thing is for sure: I am in the other side of the Ocean and as far as it seams I feel so touched by her history, by your history and it brought to me a different way of looking to life and appreciating what I have. Your baby, your story spread hope and love around the world. I am sure you would change all of that for being able to hold your baby once more, and you are absolutely right for wanting that. But what your family accomplished is a lot, and is huge and hopefully she will now be able to help other children, and through theirs eyes get to live all that she wasn´t able to live herself. Lots of love for you and Mike!

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  6. Wow how hard that has to be my older son was diagnosed with nb at the age of 8 months but thank god our lady of guadalupe and jesus christ his doing great he was in stage one but is really hard to see our children go thru this I understand how you feel you are a very strong woman my god bless you will keep you and your family in my prayers

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  7. My heart aches for you. Saoirse would be so proud to know she is helping others and for you to have the strength to go through all the procedures is amazing. She is living on in so many people. Strangers, friends, families. Her eyes shine through ours and her hearts beats in ours.
    I cannot imagine the pain you must feel everyday. It suffocates me to think of. But, you did everything right. Saoirse did everything right. Never ever doubt that.

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  8. I'm so sorry. Again, I'm crying for a child that I never met. I would have given over my own body to cancer if it meant she could be here again. Children just shouldn't die. Absolutely breaks my heart. I am so sorry.

    You guys did everything you could do. That little girl knew she was loved and treasured. And she continues to be so very loved and treasured, just in many more hearts now.

    Hugs.

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  9. I am so sorry for what you had to go through, what Saoirse had to go through and the amount of pain she was in. You now know that it was not genetics, so it has to be something else, something in the environment, the water, the food.... what is it? That's what we have to find out. I still find myself asking these questions, "why did Saoirse die? why did she have to die? why don't we have a cure? these kids are so young, what is it that they take in their bodies that makes the cancer cells grow?"

    We are here to support you in whatever you choose to do to bring awareness for this disease.

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  10. I sit here and have to compose myself after reading your post. My 9 year old daughter was diagnosed with leukemia in June. you were on 6 North while we were there. I remember walking by your room and seeing Saoirse in her crib smiling and playing! She was so adorable!! When I read in December that she had passed away it was so upsetting to me. I was so sad and had to go into the bathroom to cry. My thoughts and prayers are always with you. I was at the Jimmy Fund Clinic with my daughter the other day when you and your husband were there. We have never met but my heart aches for you and the loss of your beautiful angel. You did everything right!! She will be in my heart forever! Please take care...Chris

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  11. i walked past Children's today and thought of you all. i've walked past it many times. mostly on my way to get my own ultrasounds. one of those times -6yr and 3mo ago- i was getting a confirmation on a miscarriage. i do remember thinking to myself at the time, as i waited for the CT2, well at least i'm not over there [at Children's] i guess. it's weird what you think at those kind of moments. i had forgotten about that particular moment until now. and i only mention it because today, though, it was so very different. because today i actually knew of specific parents and children, not the hypothetical ones that i was thinking of so many years ago (as i tried to console myself in some round about way). i looked up to the windows and thought about those kids in a way i never have before.

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  12. Much love to you and your husband. My heart breaks for what your family has been through. But you and your baby are full of light and love. I am blown away to hear that Saoirse's cells are helping researchers. Wow. Even in your heartbreak, you had the strength donate cancer cells in order to help others.

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  13. I am sorry that Mike and you have to go through with this. I know how it feels. My thoughts and prayers are always with you two.

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  14. Kezia - What a juxtaposition of emotional days that must have been for you both. Just know that your and Saoirse's story continue to affect the masses, I cried once again reading your post, and as a PP commented, continue to feel very humbled. What pain Saoirse truly must have been in? I'm so glad she is helping so many different kids already, she'd be so happy with all of the new friends she's made! Much love, Amy

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  15. the three of you were robbed by this hideous disease, kezia. i am so glad to know that you and mike got some peace from the pathology report. i am not surprised at your generosity and that part of saoirse's legacy will be a cure for NB. much love.

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  16. NEGU Kezia!! Tears when I read this, but knowing your precious Saoirse is no longer suffering and at Home with Our Lord and Angels gives comfort. Kezia, you need to take care of your health as well. You have all of us Praying for you and your family,and also for a cure. Saoirse will never be forgotten, she will live on in many Hearts and when they find the cure, Saoirse will be Honored. Keep your faith and Never Ever Give Up(NEGU) we are all with you. God Bless You and Your Family Always - Patty Fuller

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  17. Nice posts …Thank you for sharing….

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