Lauren (Hilary, Marissa, granny and Finlay) was up at CHLA for her weekly scheduled appointment for labs. They found out we missed our 9 am appointment with Dr. Brown when we got there, which we didn't even know about. Also, around 4:30 pm, out of the blue they decided to start Lauren's new chemo regiment consisting of the chemos: Procarbazine, CCNU (Carmustine), and Vincristine. We didn't think we'd start until we had met with Dr. Finlay next week but Dr. Dhall felt comfortable enough to begin it. The biggest concern for not starting her chemo right away was Lauren's bacterial infection in her port, due to the side effects of the chemo, which can lower her blood count. However, since Lauren has been on antibiotics for 12 days they weren't as concerned about it. Hilary has been administering her antibiotics via IV 3x a day since we've gotten home last Thursday (6 am, 2 pm, and 10pm). The antibiotics come in these bottles with a balloon inside that is filled with the antibiotic. It takes about two hours for the medicine to be administered. Not bad. At least she can put the bottle in her pocket and is not tied to a pole.
The road map (directions): Lauren took CCNU last night via pill and got a push of Vincristine via her port. A push is just like a shot vs. an IV drip, which takes longer to administer. She'll get another push of Vincristine next week and then she'll start taking Procarbazine twice a day via capsule for approx. 8 days.
Side effects: Low blood counts, mouth sores and of course loss of hair, but Anna doesn't think she'll lose her hair. The biggest concern will be low blood counts (usually hits in 2-4 weeks) and she won't be able to go to school, which means Marissa won't be able to go to school. Also, she'll have to go in twice a week to draw labs. We are hoping and looking for a place that can do this that is closer to our house instead of having to drive 1 1/2 to 2 hours for a 15-minute appointment. The process will be repeated after 6 weeks. Really putting our Disney Cruise in jeopardy.
While she has improved a little, Lauren is still quiet and rarely smiles. She has no interest in doing homework. She walks and sits as if she is in a trance. She doesn't like to be cuddled (which really hurts mommy's feelings). We are not sure if it's because of changes with her tumor, or if she is depressed. Maybe she heard something at the hospital, or maybe some kids at school have said something to her. Either possibility is very heart breaking. We thought about having her see a child psychiatrist, but we're also a little nervous that the psychiatrist might plant a fear in her were none previously existed. I've also mentioned before that we've gotten all our strength from Lauren who has been a fierce warrior, but now…, she seems different (I don't want to say she is giving up), but I feel it's our turn to give her strength so that she has the will to continue to battle.
I know we don't say this enough, but we'd like to thank everyone for your continued support, thoughts and prayers. It really means a lot to us. While some people may think we're strong, we're really just barely holding things together by a thread. While this is easily the toughest thing we've ever dealt with, we are constantly amazed and grateful for the support we have received from family, friends and strangers.
We also want to give a special thanks to the CHLA nurses from both the day & main hospital to radiology and Sarah from the playroom, who really spoils us and looks out for us. They go so far above the call of duty. I don't want to list all the things they do in case they get in trouble for giving us preferential treatment, which I feel they do. Many of the day hospital nurses have become actual friends, who we'd meet up with for dinners or lunches. They come and visit us at the hospital on their off hours and even their off days. They've brought us lunches, dinners and cupcakes (both homemade and bought). They have even driven all they way down to CHOC to visit us when Lauren was admitted there. They have tracked down doctors to get Lauren's X-rays, MRI or CT scans read for us. The love and concern they have for Lauren (and our family) is just amazing, for which we will be eternally grateful for. In this sense, we are really blessed.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Thursday, February 4, 2010
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