Lauren and mommy have checked out of the Ronald McDonald's House and are on their way home!! Lauren did have to go into the day hospital for labs, which indicated her blood count (ANC) is over 8k, anything over 1,500 is considered normal. While we are grateful for the Ronald McDonald's House we would rather be at home. It sure will be nice to have the family home, in our own house, together (even though there is a still a big hole in the bathroom). Lauren and Hilary haven't been home in 14 days. What started out being the toughest round of chemo yet, finished as one of the easiest. While she had to go the emergency room once, to everyone's amazement including Dr. Finlay, she never did have to be re-admitted once she got out after her bone marrow transplant. Lauren proved us wrong. She told us she wouldn't be re-admitted. She was right.
Lauren is done with her main chemo treatments. Yeah!! It's hard to believe. She has endured seven chemo treatments since May, four standard treatments and three mega-mini treatments and three stem cell rescues, Four surgeries, including two on her brain, numerous blood and platelet transfusions, 5 MRIs, numerous visits to CHLA and 10+ trips to the emergency room. The one thing that I've learned is, while Lauren may come off as very sweet and gentle child, inside, she is as tough as anyone. What a Trooper!! I am so proud of her.
So now that her chemo is done, now what?? I dunno. We never really "really" talked about what we're suppose to do after her chemo treatments were finished. At one point, we were just hoping she'd make it to her 5th birthday (which is this Friday). It's a little scary and it feels a little weird. We've always had a road map/game plan. I think Dr. Finlay mentioned Lauren would be on low dose maintenance chemo for a year or so, but Hilary heard that we'll now attacking the low grade portion of the tumor which tends to be harder and more dense than the high grade - more aggressive portion of the tumor. It's funny how both Hilary and I will come out of the same meeting with Dr. Finlay or any other doctors and have heard two totally different things. Someone had once recommended that we bring in a tape recorder to these meeting, but we never did. It would be nice if Lauren could begin to have a normal childhood, and…, we could start to be a normal (relatively speaking) family again. I think she is on the waiting list to get back in to her pre-school at Olive Branch, which would be nice for her to be around other kids her age and have some structure in her life. Of course the thought of leaving her by herself at preschool scares the heck out of me, even though the teachers and staff are wonderful there, but you know what I mean.
We'll find out more information and the game plan after Lauren's next MRI, which is scheduled at 6 am on Christmas Eve. We were suppose to meet with Dr. Finlay on New Years eve to go over the results, but we're taking a short trip up north to visit the Nihei clan and friends in the Bay Area. Just found out we'll be meeting with Dr. Finlay in the afternoon on Christmas eve after her MRI.
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
Monday, December 8, 2008
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment