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Aug 01

It’s all relative. And sometimes, it’s a little bit related.

My kid got another IV of immuno-globulins today. She was at 11,000 this morning. Close enough to the magic treating number of 10,000. But because this keeps not getting better, we have to investigate further. And the next step is a bone marrow biopsy on Tuesday morning. A big needle in the back of her hipbone under anaesthesia. I was expecting it, so I wasn’t totally freaked out, but I was a little bit freaked out. The image of her lying there with a needle punched into her bones… argh.

Then, we sat in the onco waiting room, to get a day-bed for the IV. We ran into the 11 y.o. badass from last month, who is finally nearing the end of treatment. I thought about how she not only had marrow biopsies several times, she had a piece of her hip removed. It put my kid’s situation into a little bit of perspective. I freaked out a little less.

Then we met another little girl. She’s 10, let’s call her Mai. Mai is Chinese, her parents speak Cantonese and a bit of English but not enough to understand when the doctors explain things. Mai speaks Cantonese too, but thanks to our wonderful immigration policies, she is fluent in French, doesn’t speak any English. So there was a translator from the hospital, to listen to the doctors and make sure that both Mai and her parents understood everything. There was a lot of arm gestures. From across the room I understood that Mai was worried about her new port and was really upset that her hair had started falling out. I felt really bad for her.

My kiddo got called for her bed, so we went in. Next to us was a younger girl who was sort of alone. Her mom was in the hospital but she was running around making appointments and getting answers to questions and she kept popping in and out. There is a Child Life worker there that sits with the kids when they are alone, but it was a super busy day and she was taking care of lots of kids. I saw that this little girl was stretching her neck trying to see the movie we had put on in our cubby…. It took me less than 3 minutes to rearrange the beds and curtains just enough that they could both watch Brave (how appropriate) from their respective curtained-cubbies. Together but not. Big smiles from the little girl, big smiles when her mom came back in. A silent nod of thank you.

Eventually my kiddo fell asleep, she always does, those IVs take 4 hours, and I saw Mai’s parents very worried every time the bottles would be changed, the IV would beep, etc. The translator wasn’t always there. The nurse would speak in French to Mai, who would translate in Cantonese to her parents, who would then repeat it back in English to the nurse. I felt so helpless. I wished I could do ‘something’.

I walked over and I spoke to Mai. Showed her my port scar. Told her it was going to be ok. We talked for a minute, then she translated for her dad. The look on his face… he looked, relieved. We kept talking. I told her I would bring her one of my scarves when I come back on Tuesday. I showed her my long haired pics and my bald pics and I told her it would come back. Her mom came in the room. I pointed to my sleeping kid and said she was from China. We talked some more…. .Her mom is from the SAME PLACE in China as my sleeping kiddo. WHAT ARE THE CHANCES? Really, think about that for a minute. China is huge. The planet is huge. And yet, this mom is from the same tiny tiny place….

I still feel a little panicked about the bone marrow test. But you know what? It’s going to be ok. It could be so much worse. It’s going to be some rare auto-immune thing, that much we know, we just don’t know which. It could be much worse. It’s all relative. And a little bit related.

4 comments

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  1. Liz

    You have become That Woman. The one who knows what’s up, who is in better control of the medical shit and the situation in general. Who can walk the onco ward and instead of being full to the brim of her own stuff, has enough room in her body and her head to see what other people need. And you know how to help.

    I’m not positive, but I think you posted, ages and ages ago, about meeting one of these women when you were waiting for something. You are that woman now.

    Look where you are!

    1. outrunningthecloud

      good memory! yes, I have met ‘that woman’ on a few occasions. Today, I thought, this is not my story, this is not my kid, I’m just going to sit here and mind my own business. But that little girl…. I couldn’t. And I’m glad I did. For just a few minutes, they forgot how scared they were, and the nurses were able to just be nurses. And on Tuesday will pass along a few of my favorite scarves, they were lucky for me, there will be lucky for Mai.

  2. Robin from Israel

    It’s been years since I commented but in a total fluke of fate I’m in Montreal (visiting from Israel/New Hampshire) this weekend and happened to walk past your store, so I figured it was long past time that I delurked to let you know that I’m thinking of you and your family and holding you in my heart, hoping that brighter times are ahead for you all.

    xox

    Robin from Israel

  3. Anna in Turin

    I hope that your daughter gets better soon NJ, pls keep us posted on the biopsy. I worked at the Montreal Children’s medical ER for years, it’s tough to see sick kids. I think these families were lucky to have a caring person who “gets it” there …. thanks for being there for them V.

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