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 đ
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 âpoleâ with a feeding tube and fluids, 1 mom and a gorilla and pig (they were the stuffed animals who made the âcutâ 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 âkissedâ her on her nose, chin and cheek and didnât 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 couldnât. 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 âŚshe had 20âŚhers were evenâŚhis werenât âŚeven 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….â âŚphew âŚI passed
EKG & Echo’s….results are in âŚ.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 âbird” 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 whyâŚI 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. Itâs from her 2 rounds of that awful Cisplatin chemotherapy. Itâs known for hearing loss.
Ok I think, so she canât hear a high pitch. No biggie right. Then the doctor continues. It could get worse. They donât know if it will, canât stop it if it does, and canât reverse this damage that is now permanent. Ok I think, well it wonât get worse. Like everything else Iâll just make up my mind it wonât. Iâm not crying. Em can tell Iâm rattled. She keeps fusing and wonât sit still. Sheâs picking up on my energy. Sheâll need 2 hearing aids. One of each ear. What?!?!? Iâm sorry I must have heard wrong now. What did you just say? How can this be? If we didnât even know she had hearing loss until your stupid little birdie beeping test then why would she need a hearing aid? Obviously itâs not affecting her day to day. Well, I learn, actually it is. She hears fishâŚbut only hears the âish.â Because she used to hear the âFâ 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 canât be that bad I mean Iâve seen the commercials hearing aids are like little tiny nothings nowâŚno one will see them. Wrong. Kids her age need the big ones that hook behind her ear. She wonât be able to get a small little in the ear kind until sheâs 15 or so. Seriously? Isnât there a surgery or something they can do to fix these little âinner ear hairs???â I mean itâs 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 doesnât understand what we are talking about. âTell me!â she cries. She always says this to me when she knows weâre talking about treatment for her. How do I explain to her she canât hear things she thinks she can? After all I just praised her at how fabulous she did at her âbeepingâ game. I hate cancer. The doctor shows her a picture of an ear âŚit shows the inner ear. I explain that she has little âhairsâ 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 âŚâso when we take our GCSF (the white blood stimulator that we inject into her leg after chemo) what does it do?â She knows this answer âwake up!!â she yellsâŚ.thatâs right âŚ.it goes though her body and tells her white blood to WAKE UP! âWellâ I explain âyour little ear hairs got tired from the chemo. It made them {insert yawn} and fall asleepâ {stop wiggling fingers to show they are sleeping}. So we need to wake them up because they canât hear the high beeps!! So we get ear jewelry that you wear on your ears and it goes into your ear and says âWAKE UP!â {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 Iâm not fully convinced sheâs ok with it. Iâm 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 donât want to see her little bald head touting two large hearing aids. I donât 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 thinkâŚthat was a life time ago. Not be reminded regularly that I hate cancer. I donât want people to look at her. My thoughts rush to her in school. I donât want kids to make fun of her. I donât want her to be dateless. I donât want her to be self conscious. To think she is anything less than perfect. I am keenly aware I seem most upset about âwhat other people will think.â This is odd for me. I donât usually care what other people think. She doesnât 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 wonât 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 âeffectsâ just be such a part of her she wonât know any different âquality of life.â 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. Itâs from the chaplainâs bereavement services.
Suddenly a hearing aid doesnât seem so bad. I think they even come in some cool colors now.