Huge Update!!

Chloe is grade 1 tumor!!!!!!!!!!!!!
Dr. Fisher said very low chance of growth and very limited risk of significant growth or threat to life! Chloe is going to live.
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Chloe & Amelie



Chloe with Grandma Andersen

Update from Chris

Chloe's back to school an hour a day plus recess with her friends. Yesterday she visited her class for the first time in months. They had all signed her pink helmet. I took Chloe swimming a couple days ago and we swam underwater and she did flips like she forgot she had seizures. She had a few seizures and I would pull her up and lay her on her back. She acted annoyed that I interrupted her swimming. Today she took me for a ride! She rode her new bike around the track and I had to sprint to keep a hand on her in case of a seizure. Her incission is healing and her hair is growing fast. She still has about the same number of seizures a day. Some are better than others. She bounces back from her seizures far better than she did before. She has a blast with the Wii and has discovered a hidden talent for talking smack. Her teacher who visits our home each day commented on the improvement she's noticed in Chloe's memory and ability to understand. Chloe gets tired during the day from her healing but still doesn't seem as tired and wiped out as she did pre-surgery. Chloe has posted on her wall the large colorful banners of pictures and messages from her Howell Mountain Elementary classmates and PUCE friends.

New Post from Chloe's Dad...

Tired and ready to crash. Thanks to all for the tremendous support.
Chloe is doing well. Still has seizures as to be expected. Her mental
clarity has improved so much. Don't say it. I'm not going to do the
same procedure! Again we are so thankful and deeply touched by the
love and prayers of so many.

Update from Chris...

"Chloe's happy to be home and has already enjoyed catching up with two of her best friends. Her scar is healing well and her hair is growing so fast! (miracle grow) We've seen a lot of side benefit from the surgery and will see how her seizures do as she heals. Look forward to catching up with all."

Chloe with Aunty Fleur and Uncle Darren

Chloe's Home!

Chloe's home & looking good. Tired from a long day though. Going to bed now...
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Coming Home!

Chloe comes home. Tomorrow!

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Fewer Seizure & Walking Better...

Only one seizure last night. No seizures this morning which is a first. In PT her balance seems a little better than yesterday. Balance, gait, and stride are much better than pre-op.

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Homework & PT

Chloe did homework from the hospital school and is starting PT now. PT uses the Wii video games with a number of their kids! Thanks for the Wii grandma and games Rob, Goran and Howell Mnt Elementary! 4 seizures this afternoon, 2 last night and 2 this morning. Chloe's now downgraded from PICU to Intermediate ICU.

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Chloe Moves, Swelling Lessens, Tumor Board Meets Soon

Chloe looks much better today. Swelling has gone down a lot in her face and eyes. Her spirits are up more. She smiles a lot. In a few minutes she will move to a more stabilized unit. She's doing PT and OT now. She will do more aggressively this afternoon. Right side is weaker and less responsive than left. Tumor board meets Monday and we will hear pathology results on her tumor tissue early next week. They took out entire frontal left lobe. I haven't seen a single word finding problem yet. Her eyes are much brighter than pre-op. We have really appreciated all the messages from friends.

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Cousin Rob...

Latest text from Chris: Cousin Rob will be visiting soon. Chloe has not complained once. The pokes and IVs create tears.
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Walking, Coconuts & Shaving Our Heads

We're going to get chloe walking around and moving this afternoon. Chloe doesn't want me to shave my head. She does want Darren to. Just kidding. I'm off to make juices for Chloe. She drank 2 coconuts this morning. Everone keeps saying how cute Chloe is.

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Still Seizing

Chloe still seizing. Dr. Fisher didn't seem happy. Put her back on one of her meds to prevent withdrawl. Will be interesting to see if it zombies her out like pre op.
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Speech Path & PT today...

Speech pathologist and physical therapist will checkout Chloe today. She may move out of ICU to another floor soon if there's a bed. Both eyes swollen this morning. Still seizing ocassionally. May go for a wheelchair stroller later.

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Jokester...

Chloe's cracking jokes & one-liners. Seems to be getting back to her old self.
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The Latest from Chris

Just got the following text message from Chris:

MRI showed they took out precisely what they had planned. They didnt touch any funtion areas. Her brain will shift forward and fill in the area removed. This will make more of her tumor more accessible. Seizures have subsided a lot. Her clarity of thought and expression is much better than even the day bedfore her surgery. No word recall problems and delay noted. Movement looks good as could be expected after surgey. (nice relief) Shes showing hints of her old self which weve missed.

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The Latest from Chris

Just got the following text message from Chris:

MRI showed they took out precisely what they had planned. They didnt touch any funtion areas. Her brain will shift forward and fill in the area removed. This will make more of her tumor more accessible. Seizures have subsided a lot. Her clarity of thought and expression is much better than even the day bedfore her surgery. No word recall problems and delay noted. Movement looks good as could be expected after surgey. (nice relief) Shes showing hints of her old self which weve missed.

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The Next Day...

Chloe is doing well today. She's communicating clearly and showing her typical great personality. The people at the hospital love her (no surprise there). She was even playing Uno with Julia (and winning!). It will be at least several days before we start to get an idea of what impact the surgery has had on her seizures. She had an MRI today as well so we're looking to see those results as well as pathology of the tumor tissue they were able to remove in the coming days.

Brief Post-Surgery Update...

Chris sent a brief post-surgery update tonight before collapsing into bed. Everyone's tired from a long day so we'll work on getting more details tomorrow, but here's what the last few hours after surgery have revealed:

The surgery went really well, but Chloe had lots of seizures after the procedure. They have them under control now. She's been able to hear, understand and respond. She was able to move and did okay with movement tests. It will be at least a couple days before we can start to see how her seizures are doing. She's not in pain and is now sleeping.

They ended up getting a lot more of the tumor than they expected. It was white and fibrous as opposed to soft with blood vessels. We'll have to wait for a pathology report for more on the tumor they removed.

In other news, Chloe's younger sister Amelie (turns 5 on May 19) has been staying with Auntie Fleur this week including trips to the park, time at the PUC swimming pool and playing with our two Cocker Spaniels, Cooper and Lola, as well as her own chihuahua Miles. The day before her surgery, Chloe went to Great America for American Cancer Society "Courageous Kids Day" so Amelie got to visit Six Flags Discovery Kingdom in Vallejo. When she got home, she was able to hop on Skype for a quick video chat with Chloe before surgery.

More updates are coming and Chloe's family wants to thank everyone for all the love, prayers and support!

Going to see Chloe...

Chloe's parents will be going to see Chloe in the next 20 minutes or so...

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Surgery's Done!

Surgery went perfect even got some of the tumor. I'll update details on blog. We wont begin to know the benefits or effects for next few days. Answer to prayer!

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Going Well...

Just got message surgery is going well. Will be done in about couple hours.
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Still Going...

Surgery still going. Expected to last 7-8 hours.
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Twitter Updates

Updates will also be posted at twitter.com/funkymusik

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Surgery Prep...

They're shaving part of Chloe's head now and then they'll begin the procedure.
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Here's What's Going On...

Chloe’s epilepsy surgery will take place this Monday at the Lucille Packard Children’s Hospital in Palo Alto. Her surgery will be a Frontal lobectomy (remove the left frontal lobe) to help with the multiple seizures she has each day. (She has been using a wheelchair and a helmet to protect her from falls.) She will most likely stay in the hospital for the remainder of the week.

We are extremely encouraged this surgery is possible because we have no other viable alternatives to treat her seizures effectively. This surgery is possible because all her seizure activity is localized in the left frontal lobe. We were concerned that the seizures might be triggered in a number of locations deeper in her brain which would be inaccessible. We do not expect significant impact to her language and motor function. We’ve been told it is possible that her seizures may cease all together. On the other hand, they won’t be able to take out any of the tumor because because of its’ diffuse nature and deeper location. Fortunately her tumor hasn’t grown since we learned of it in 2006.

We can’t begin to describe the difference this surgery could make for our family. We are extremely thankful for how God continues to bless us through your love and prayers.

- Chris

Address for Lucille Packard:
725 Welch Road
Palo Alto, CA 94304

best location to mail cards:
2240 Village Court
Belmont, CA 94002

Chloe Updates will be coming soon...

Stay tuned...