Sunday, August 14, 2011

A Better Day

Getting some use out of the crib
This morning started with the nurse poking her head in our room to let us know that transport was on their way to take us to radiology.  (As an aside, the nurses are encouraging our cosleeping, and even helped out with putting the crib next to the bed to help keep him safe, which is so great.  I don't think I'd get a wink of sleep if they made me put Finn in his crib.)  Finn woke up on his own right before they came, and I had time to wash my face and put on a jacket to cover up my nursing mom cleavage.  He loves riding in the wheelchair.  I hold him facing forward and he takes it all in as I chat to him about what we're seeing and kiss his little head.

The ultrasound was the easiest test so far; he actually seemed to enjoy it, and I was able to watch the screen for a lot of it.  The tech didn't see anything at all on his kidneys, but we did see one cyst on his spleen - weird for an infant, but it's definitely not metastatic cancer.  Shortly after that the surgeon, Dr S, showed up with the oncologist.  There had been some concern that the MRI might need to be repeated, but he was happy with the images and didn't think we needed to do anymore, which was a huge relief.  He couldn't explain the cyst, but said that it was something we could worry about later, if we need to, and I'm fine with that.

The plan right now is to get the MIBG scan this week, which will tell us if the tumor in his chest really is the only tumor.  If it is, he'll get surgery early next week; the surgeon will first try thorascopically to completely remove the tumor, and if that's not possible, he'll at least get a biopsy to confirm the diagnosis.  If he can't get it all, Finn will definitely need chemotherapy, and the surgeon seems to think that would be curative as well.  This plan is so much better than the scenarios the oncologist was going over when we were first here - if he truly doesn't have metastatic disease, then this makes his prognosis even better, and what he'll likely have to endure so much less.

Finn looks and acts so healthy, I just can't believe that something is truly wrong with him.  He's definitely feeling the effects of my emotions and all the poking and prodding, though - he's been waking up in the middle of naps crying and he seems much more attached to me than usual.  He notices if I'm out of eye sight and get distressed very quickly.  I'm trying so hard to hold it together when he's awake, but oh I hate the thought of the pain and trauma he's going to be going through in the next few weeks.  Why does such a sweet, happy little boy have to go through something like this?  I'd gladly take it all for him, if I could.


Thank you all, from the bottom of my heart, for the thoughts and prayers and words of support.  They mean so much right now.

29 comments:

  1. Big hugs for you and Finn. I wish there was some way we could make all this easier on you and Finn. Just know we're here for you anytime, and willing to do anything possible.

    Love to you both,
    Kath

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  2. Poor little guy. You know, the thing is that when he's grown, he won't remember a thing about it.

    I wish there was something more to do then type comments and send positive thoughts.

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  3. I'm so sorry for what your poor little boy has to go through and for the trauma it is causing you. He is suck a lucky boy to have you for his mother. My thoughts are with you and I am praying for you and Finn.

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  4. Such a sweet boy, I am sure everyone is in love with him at the hospital. He is such a monkey playing with his gym. I hope that better news continues to flow your way. I keep you both in my prayers. Love you both, Amy and Zac (Foxie)

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  5. I totally agree with Evelyn - I'm trying to think if there's anything I can do from up here in Boston. So if you think of anything, please let us all know!

    It sounds like Finn is getting the best of care, and you're getting a lot of support. I hope things get better from here.

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  6. Glad to hear the nurses are encouraging co-sleeping for both your sakes...I sure you want to keep Finn as close to you as possible. He's a happy little guy & a fighter to, I bet. Big hugs to you & Finn...sending you positive thoughts & prayers.

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  7. I must tell you I have been So shocked to hear all of your recent news. Who could ever have imagined something like this. Finn looks so gorgeous and healthy it seems so wrong that this is happening to him. I suppose the Good news is that now you have found that there is a problem you are now able to set about fixing it. Thank goodness Finn has such a knowledgeable mother as you. It seems to me that you are dealing with everything remarkably. Just remember at all times that everyone is rooting for you both.

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  8. Cosleeping was such a wonderful thing for us too, while Fiona was in the hospital (and for a long time afterward). I'm hopeful that you'll get good news with the tests this week. Thank you for the update. I have been thinking of you both alot.

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  9. I hope the news continues to get better and that this will all eventually be a distant memory!

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  10. I'm so hopeful the surgery will do it and both of you will be spared the chemo. Give Finn an extra hug for me!

    -- Sharon

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  11. I'm praying for the best case scenario for Finn. You're both in my thoughts.

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  12. Praying for you all!! Thanks for the updates!

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  13. Wow - I can't imagine going through all of this. My thoughts and prayers are with you and Finn as you fight this battle.

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  14. I'm just getting caught up with you. This isn't the reading I had anticipated. I can't even imagine the emotions you're having. Finn is a strong boy and I'm glad he has a strong mom to be beside him through this! May the thorascopic tumor removal be all that he needs!

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  15. Oh My Goodness Shannon. I have been away and am just catching up on my blog reading. I have no words for what you must be going through, but am feeling very encouraged by the high cure rate and that Finn is so healthy and strong. My thoughts are with you both. Please take care.

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  16. Prayers are with you and Finn. Hopefully the test reults will sontinue to look good and they will be able to get all of the tumor. As Evelyn said, thankfully later he will remember none of this. Though I know it will haunt you for a long time. Praying, praying, praying

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  17. Shannon, thinking of you and Finn. I'm glad that there was some better news. Lots of prayers and hugs to you both. ~Sri (IndianChika)

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  18. I can't imagine what you are going through right now and wish there was something more I could be doing for you and for Finn. I continue to hold you both in my prayers and thoughts.

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  19. Finn is so lucky to have you for a mommy, Shannon. I hope that the news continues to improve and that you have your happy, healthy boy back just as soon as you can. Much love to you both.

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  20. Hi Shannon. I'm a recent follower to your blog, but LOVE it, as a single momma too (who doesn't blog) though my little guy is 2.5. I am SO sorry to hear about Finn, but I follow this other blog on a baby girl named Scarlett who has a neuroblastoma, not the same circumstances, but it still might be helpful reading/contacting. I'll be praying/sending good vibes your way:

    http://brandiandchris.blogspot.com/

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  21. I am so pleased to hear that it isn't metastatic disease and that the prognosis is positive. I'm sending you and Finn as many positive thoughts as possible.

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  22. Here by way of Oak's blog. She told me about your Finn this weekend and my heart just dropped out of my chest. My own daughter is 3 months old and what you're going through is the scariest thing I can imagine. I am so glad to read today's post and hear that things are looking up. I will be praying for your sweet little man and his mommy who has to be the strongest woman ever. ((hugs))

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  23. Shannon, you and Finn have been on my mind so much. He's such a trooper, and so lucky to have an MD for a mom who picked up on this so quickly. I hate that you both have to endure this, but am relieved that the prognosis is so good. Big hugs from me and my girl.

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  24. Hang in there. I will continue to keep you both in my prayers!

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  25. Thinking of you both from my own hospital bed (under happier circumstances) and so pleased that things are looking better than you feared.

    thanks for the frequent updated. You have been on my mind a lot!

    Sending hugs and encouraging thoughts,
    Abby

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  26. Sending hugs your and Finn's way. It sounds like you have a great support system there.

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  27. So happy things are starting to look up... even if you're not where you would want to be, at least the view from where you are is getting better. Sending good wishes to you both.

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  28. Finn looks terrific given all that he has been through. Such a cutie! May you find strength in the love and support so many are sending your way. You are handling this with such grace. You and your sweet baby boy are in my thoughts and prayers.

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