Why I Blog
The original intention of this blog was to keep everyone updated on Ana’s condition, (eventual) diagnosis and treatment. But I had a selfish motive too – it was to reach out beyond the confines of the hospital room to a support system of friends, family, community members and just anyone out there who can send words of encouragement, prayers and support. There’ s a practical purpose too – we need to raise money.
Most people have given me incredibly positive feedback about my posts and this blog. But some people have expressed concern, based on what I’m posting, that we’re not doing enough for Ana, or she’s in the wrong place, or perhaps this is more about me than it is about her.
Perhaps it is. I feel selfish admitting that, but she is my child and I’ve caught myself saying things like “we were admitted to the hospital on…” or “We had a bad night…” instead of “Ana was admitted…” because I feel so connected to her. Ana is eleven and incredibly independent, but we’d only just begun the process of giving her more freedom, more responsibility, more room to become the amazing adult I know she’ll become. She’s still a child, my child, and now I’m terrified of how this will end. Life without Ana? It’s unbearable.
If some of my posts sound raw and negative, it’s because I don’t have the capacity or strength to edit myself. It’s not because this is a bad hospital, or the doctors are ignoring us, or we are stubbornly refusing to look at other options. On the contrary, we have spoken with Dr. Hochberg many times about getting other teams involved and, if it comes down to it, we’ll move her. We fully intend to get the Boston Hospital team involved if this turns out to be EHE, for example.
I will say this – Dr. Wu, the liver surgeon, is one of the top liver transplant surgeons in the world. He has a track record that’s difficult to beat – 100% patient survival rate. He did a liver transplant on the youngest person ever (18 days, I believe) and the oldest. Look him up – Dr. Youmin Wu. He joined Westchester Medical in June of this year.
That doesn’t mean we’re happy with every single thing about this hospital or Ana’s care. But when we have a question, we question. When there’s a nurse we don’t like, we speak up. When there is something that doesn’t make sense or we think we can make life easier for Ana, we try our best. In this way we got her off the 24/7 I.V. fluids which makes it MUCH easier to sleep. Now it looks like she’ll be on overnight TPN on the I.V. to supplement her nutrition, but that is necessary because her tumor is literally stealing all of her nutrients. Yesterday I was able to get her down to one shot of Lovenox per day after speaking with Dr. Hochberg about how much the shots were upsetting Ana and causing her pain. We’re getting used to the new room – someone found a cable for her t.v. and we watched Spongebob for 2 hours.
I wondered yesterday if I should shut down this blog and these updates. Is this too self-indulgent? Am I upsetting people and causing more anxiety?
After all this is Ana’s illness. It’s her journey. But Jim reminded me that we are all going through this – the four of us as a family. Ana said she did not want to post to the blog, but she doesn’t mind that I’m doing it. She also doesn’t mind if I post some of her drawings and, hopefully soon, some photos and videos she takes on her iPad.
I am used to blogging about crisis – I did it for eight years with Emily, starting when I was eight months pregnant with her. That blog started out in a place of crisis, and ended up just being about a happy, healthy kid who happened to have a cleft lip. That’s why I eventually stopped updating it. It helped me get through a very rough time and meet some amazing people (Hi Ella, Hi Tanyia, Hi Colleen!)
Thank you for reading this very long post, and sticking with us during this incredibly rough journey. I hope to post Ana’s diagnosis today, and possibly have more news about what’s ahead for her. As always, prayers, white light and positive energy are what’s most needed as hopefully this first leg of the journey – all the waiting – comes to an end.