14 Comments So Far

  1. Jackie, You dont always have to be strong, you can vent your fears and frustrations all you want here and you will be comforted and supported by so many. I am amazed by your willingness to open up your heart and pour out your emotionsl. You will be astounded by how strong you will be for Ana, it is hope that keeps us all going in adversity. Hope for the future and for Ana to get through this and for your family to be whole again. Its Gods grace that gives us the strength we need to see us through the difficult times when we cannot must find a way on our own. I know you have said you are not a religious person, but know that you can call on God and he will here you and help you and your family through this

  2. Falling is ok and allowing all the love and support to catch you is also ok. It feels like so many of your questions cannot be answered right now so the one day at a time or 5 minutes at a time is also ok. Thanks for reaching out, sending all our healing thoughts to your whole family every day.
    Kind Regards, Susan Bryan & Hudson

  3. it’s true what everyone is saying – the best way to be strong and find your strength is just to BE yourself – even when it means you are frightened, angry, sad. You are an amazing mom/woman/human and all you need to do is be yourself through all of this.

  4. Being strong doesn’t mean you aren’t afraid.. If you weren’t afraid right now it would mean you were sociopathic. Being strong means you are able to function and do the things you need to do even tho you ARE afraid.. You are incredibly strong, and you are NOT alone…people you will never know and never meet are there right there with you..following your blog, You are an incredible person, and I am so so proud of you. I love you sweetie..xxxx

  5. No need to apologize, and you don’t “need” to be strong, you “are” strong. And the fact that you can think through and understand your feelings and write about them so eloquently shows how strong you really are. I can’t imagine your fear, these are big decisions and whatever decisions you make will be the right ones for you, maybe not for everyone but for you. I am heading to church now, I will say a prayer for you all. I know you’re not religious, but it can’t hurt, right? 🙂 Hang in there…

  6. I think it’s perfectly valid to feel in a whirlwind of “How can….what if….can we….will she…I wish…” That’s not “not being strong.” It’s pretty normal for the beginning of a big bang like this. Of course you want to undo time, undo this – anyone would! But I see you dealing with these cards through your posts and you seem to be still standing pretty well. Finding times of *peace* amongst the storm is something that will come. If you have not already said it to yourself or others, I’m betting you will find yourself saying “Ana dealt with XYZ better than I did!” and you will learn from her. As parents we are going to have a worse time of it than our kids as patients because we want to fix and protect and make it all go away. And from the comments I’ve read people are going to keep reaching down into whatever hole you feel stuck in or falling down.

    And Boston Children’s is an awesome hospital. I’m very grateful to live so near some of the finest hospitals in the world, and that is one of them. Live in today for today, and when it’s time to ask about other hospitals, treatments, etc. that’s the time to worry about that. One thing at a time, one day, one step. My thoughts and prayers are with you all every night.

  7. Hi Jackie – I can see how you feel you are moving away and feeling that you may not be able to come back – with all this stress and the vital questions that you have not yet had answered, or even thought to ask yet. I just wanted to let you know that I am thinking of you all the time and wish that I could take on some of the burden to at least give you a little respite. I hope that you are able to spend a quiet day with Emily today. Do you need anything at home as I know solitude is sometimes not helpful. Is there a patient / family advocate who can help you at the hospital with sorting through the options? IS there a counselor that you and your family can work with to help because while the website gives your vast network a way of following and supporting, an actual person may be helpful too. Hope to speak to you soon, sending healing thoughts to Ana and support to you all, Mary-Ann

  8. I know that sometimes it feels this life altering fork in the road is your own private hell but I know there isn’t a person on this blog and within your family that isn’t there for you. Seeing you in action with Emily only reinforces my feelings of how competent you are in dealing with the crisis life throws your way. I know you have the strength to see this thing through and ALWAYS remember Mom and I as well as everyone else here is ready to support you in any and every way we can.

    Never be concerned about sharing your feelings. Take all this good advice you are getting as just one of the indicators of how much people do care. I know in the end you will make the best decision based on your ability to understand and manage difficult situations and will come through it with the support of the people that care and love you.

    Love – Pop

  9. Never apologize. Sharing your thoughts and feelings here keeps us informed and lets us help support you.

    I think the delay in starting chemo is a good thing. It gives you time to research and ask questions before you make that leap. Have you asked the doctors these questions? I checked out the Boston Children’s Hospital page that I believe Janne and Susan mentioned. It sounds like they are really experts in the area of EHE. Have Ana’s doctors consulted with them at all regarding treatment? If so, would they allow you to sit in on a consultation and ask questions, even if it had to be done by phone or video conference? If not, would they at least arrange a meeting for you with all of the doctors on Ana’s case, together, in one place for you to ask questions. Just some thoughts.

    Whatever happens, we are here. Virutally, physically and emotionally. To support you in any way we can.

  10. Hey Jackie – Just take it one day, one moment at a time. These are big, scary questions that you cannot answer all at once. Just deal with what is in front of you. You do not have to make these decisions by yourself, and you do not have to make them all at once. Right now, at this moment, Ana is safe, she is healing. When it comes time to make the next decision you will make it. Then the next one. I hear how desperately alone you feel. I imagine I would feel the exact same way. But we are all here, thinking of you and Ana and Emily and Jim almost non-stop. So many of us. I am going to try and call you now.

  11. Jackie, I just called my mom and we talked about Ana a lot. I know that some people have offered you alternative treatment. Right now in Indonesia, many people use soursop leaves as the cancer treatment. It works really well. My mom has the tree, which is now bald because many people take it. She promised that she will try to ask our neighbors and send dried leaves to you. http://healthmad.com/conditions-and-diseases/soursop-leaf-cannon-to-destroy-the-cancer/
    She also said that the best chemo is in China. A lot of rich people have their chemo in China and they are now cancer free. It is cheaper there than here, too.
    My mom also said if it is possible to try stem cell for Ana?
    I don’t want you to get more confused with all of these inputs. But I also want to fight the best for Ana.

  12. Jackie, I really don’t know what to say. I feel for you. Sending you hugs, I promise that we will pray for your family everyday, for endurance and strength.

  13. Yes Jackie, we are all reaching out together, to cushion and break the fall , to cradle you all in our loving, caring arms and hearts. We are joined together and stronger than alone, and we reach out in unison to hold you as you move through this . Your strength shines through even when there are questions, doubts and fears and will help Ana feel her strength too.
    Sending quiet ,healing energy to you all

  14. Oh, Jackie, my heart aches for you, for Ana, for all of you. Of course you feel like you’re falling, like you’re alone. This is a huge, unfathomable and isolating experience. And yet, know that you are not alone… A great community of supporters is here for your girl and your family, and will be here throughout this ordeal…One step at a time, one hurdle at a time.

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