These are my thoughts, struggles, and cherished moments as I carry my family through childhood cancer.
Tuesday, May 8, 2012
House Arrest
There is nothing I hate more than the feeling of having the rug swept up from under me. I've never been keen on surprises, and I've never been overly patient. So this week has really been testing my own ability to cope, HA! and it's only Tuesday. It's going to be a long 2 weeks...
Yesterday Brinley had her scheduled blood work pre-surgical yaddd yadda. Last month her counts were great, the talk of increasing chemo was breached, and put off until this month. So of course we stroll in thinking her counts will be great and we can continue on this lovely little path she's been on. WRONG. Her counts have tanked, not bottomed out, but they suck and she's neutropenic (thanks to a cough and ear infection). So we've been instructed to withhold her oral chemo and we have to come in for another CBC in 2 weeks. That also means 2 weeks house arrest, nobody in, and certainly no Brinleys out. I can deal with the fact it kind of screws up another anniversary for Blake and I (last year I was stuck in isolation with Brinley for 2 weeks) we can always take a rain check. Mother's Day holds the same feelings, rain check we can play catch up later, it's just not that important. However I'll have to miss my son's last 2 baseball games of the season. I have yet to miss a practise or a game this year, and the last two big games I have to sit at home and silently cheer. The guilt is overwhelming, I understand that Brinley has missed out on a lot, she's the sick kid and I feel for her, but Carter isn't the sick one, and I feel he still gets the short end of the stick. Whatever Brin misses out on, she's made to feel cherished through the hospital staff, friends and family. Carter gets to have his mom explain why AGAIN she can't be there for him. I'm entirely grateful that he handles it so well, but it destroys me that he even HAS TO.
...Not to mention week one of lock down is steroid week? What kind of cruel and unusual punishment is this?
Today Brinley had her lumbar puncture, she was the only one slotted for today so instead of pacing the waiting room, the nurses were kind enough to let me pace the recovery room. They even offered up a few sympathetic looks and small talk. Guess I wear my anxiety all over my face. After the LP is done and over with they wheel Brin out on her bed with the oxygen mask strapped to her face. This is a first for me, I've always been there once she's either been fully awake, or stirring a little, so to see her out cold and involuntarily jerking scared the shit out of me. Yes jerking, I can tell by the look of horror that must have been on my face the anesthesiologist says, "she's still out and she's trying to cough that's why she's moving like that". I swear I aged 10 years right then. It took me back to the time where my father in law was on life support, and the machine was forcing air into his lungs, and his body to jerk slightly at the force. Oh cancer you never fail to send me reeling down the rabbit hole.
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I met your parents a the Home show in Williams Lake. I was deeply touched by your story and have added Brinley to my prayer and healing circle. My son was sick when he was little (he was in renal failure and we found out he was missing a kidney so the one he did have was deformed) anyway, he arrested in my arms and is also turning 26 this month and still is living on the one kidney)... Just wanted you to know Brinley has touched my heart and that we are sending you love and a shoulder to lean on anytime you need one... love and blessings, Sharon
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