I posted this on Em’s Fan Page 4-22-10 during her Bone Marrow Transplant Workup Tests…..we just got fitted yesterday for her hearing aids …thought this would be an appropriate re-post 🙂
BMT workup Update!
So after 10 days of my daughter’s father refusing to communicate through our attorney’s in regard to Emily’s BMT workup week today we had yet another fiasco. Long story short I took her to the dentist (after a nice confrontation in the hospital hallway…and yes I still have 2 protection orders) and her teeth are fabulous!!! She was scared to go to the dentist. It took a ½ hour for the transport people to figure out how to get 1 kid, 1 wagon, 1 “pole” with a feeding tube and fluids, 1 mom and a gorilla and pig (they were the stuffed animals who made the “cut” this morning and got to go on a trip to the super cool fun dentist) into a van to get her to the dentist.
When we got in the room we decided the x ray machine looked like an ostrich head. I was, of course, jealous it “kissed” her on her nose, chin and cheek and didn’t kiss me! No fair! I said. I told her there was no way she could bite on the black cookie (x-ray film) and hold it in her mouth. I was sure she couldn’t. She grinned and held her bite. Then laughed and laughed that she knew she could do it! We counted gorilla’s teeth… he only had 15 …she had 20…hers were even…his weren’t …even funnier.
Then they said she brushes better than some 7 year olds they’ve seen. (Insert mom pride here!) I have to say it was my 1st time sitting as the parent watching her brush her teeth while the dentist watched her and thinking…come on… do it right kid! Show them I’m a good parent and I’ve taught you to brush your teeth the right way….” …phew …I passed
EKG & Echo’s….results are in ….they are good!
Hearing test. 1st test comes back that her results are off from what they were in December. Ok let’s do more testing. 2nd test. Her ear is healthy so it’s not from the Corona virus she has (yes it’s actually called Corona virus….it’s basically a cold) 3rd test. Emily sits in the chair. Little earphone on her tiny ears. She has to place a toy into the box every time she hears the “bird” chirp in her ear. I see the doctor writing notes. I don’t know what they mean however I’m not thinking it’s good. Not sure why…I mean maybe those circles are good circles.
Then they put the little mini ear phone on her ear bone. I hear the high “beep” tone. I hear it again. And then a 3rd time. Each time louder. Em sits there holding the block waiting to hear the beep. I turn her feeding tube off. It must be that crunch crunch sound it makes as it turns that’s interfering with her being able to hear that beep.
Again, I hear the beep. I hear it a little louder. A little louder. On the 4th one Em puts the block in the box. She doesn’t know she didn’t hear the 1st 3. It’s all a game to her. I put my hand to my mouth. I’m big into energy. I don’t want my sudden fear to “reach” her.
After the “game” is over I look the doctor. I’m holding back tears. She confirms. Emily has suffered “moderate” hearing loss. It’s from her 2 rounds of that awful Cisplatin chemotherapy. It’s known for hearing loss.
Ok I think, so she can’t hear a high pitch. No biggie right. Then the doctor continues. It could get worse. They don’t know if it will, can’t stop it if it does, and can’t reverse this damage that is now permanent. Ok I think, well it won’t get worse. Like everything else I’ll just make up my mind it won’t. I’m not crying. Em can tell I’m rattled. She keeps fusing and won’t sit still. She’s picking up on my energy. She’ll need 2 hearing aids. One of each ear. What?!?!? I’m sorry I must have heard wrong now. What did you just say? How can this be? If we didn’t even know she had hearing loss until your stupid little birdie beeping test then why would she need a hearing aid? Obviously it’s not affecting her day to day. Well, I learn, actually it is. She hears fish…but only hears the “ish.” Because she used to hear the “F” her brain fills in the blank. She is missing sounds and not realizing it. It will help her fill in those gaps. I hate cancer.
Well it can’t be that bad I mean I’ve seen the commercials hearing aids are like little tiny nothings now…no one will see them. Wrong. Kids her age need the big ones that hook behind her ear. She won’t be able to get a small little in the ear kind until she’s 15 or so. Seriously? Isn’t there a surgery or something they can do to fix these little “inner ear hairs???” I mean it’s 2010!!! Nope. Science is working on it. Nothing yet. Maybe in the future. Right now she is stuck with ear jewelry.
Em is now getting upset because she doesn’t understand what we are talking about. “Tell me!” she cries. She always says this to me when she knows we’re talking about treatment for her. How do I explain to her she can’t hear things she thinks she can? After all I just praised her at how fabulous she did at her “beeping” game. I hate cancer. The doctor shows her a picture of an ear …it shows the inner ear. I explain that she has little “hairs’ in her ears that help her hear. I wiggle my fingers to demonstrate the little hairs. I say they hear high beeps [said in a high voice]. And they hear low beeps [said in a low voice] High beeps [high voice] low beeps [low voice]. I ask …”so when we take our GCSF (the white blood stimulator that we inject into her leg after chemo) what does it do?” She knows this answer “wake up!!” she yells….that’s right ….it goes though her body and tells her white blood to WAKE UP! “Well” I explain “your little ear hairs got tired from the chemo. It made them {insert yawn} and fall asleep” {stop wiggling fingers to show they are sleeping}. So we need to wake them up because they can’t hear the high beeps!! So we get ear jewelry that you wear on your ears and it goes into your ear and says “WAKE UP!” {Lift fingers to show hair is now awake} so it goes asleep {drop fingers] and it wakes up {lift fingers}. This makes sense to her but I’m not fully convinced she’s ok with it. I’m not. I hate cancer.
We leave the room and I walk her down the 15 hundred mile wake back to her room. Holding back tears. I don’t want to see her little bald head touting two large hearing aids. I don’t want her to have a visible reminder every day of her life about her cancer. I want to complete her treatment. Be done. And 10 years from now think…that was a life time ago. Not be reminded regularly that I hate cancer. I don’t want people to look at her. My thoughts rush to her in school. I don’t want kids to make fun of her. I don’t want her to be dateless. I don’t want her to be self conscious. To think she is anything less than perfect. I am keenly aware I seem most upset about “what other people will think.” This is odd for me. I don’t usually care what other people think. She doesn’t ever want to grow her hair back and has told me on more than one occasion if it grows back she is cutting it off. So maybe she won’t care she has hearing aids. I do. I wonder what other long term side effects she will have. Will I look back at these effects and wonder if the cure will be worth the quality of life she will have? Or will these “effects” just be such a part of her she won’t know any different “quality of life.” After all she asked the ER RN for her oxyicodone and atavan upon admittance. She knows the words broviac, CAT scan, catheter, chest tube, tumor, BMT, and biopsy. Maybe her world is so different already a hearing aid or two will be nothing.
I get back to the 7th floor. The kid in the room next to Emily is dying. The colors of life are taped to their door. It’s from the chaplain’s bereavement services.
Suddenly a hearing aid doesn’t seem so bad. I think they even come in some cool colors now.