The girls had a great weekend. Lauren, Marissa, Hilary, granny and granda, went to Phoenix to surprise their Uncle Steve for his birthday. They surprised him at his work, which was nice, since a few of his co-workers follow Lauren's blog. I, on the other hand got to stay home to work on the house, golf and go clubbing. But of course, all of my friends are old, married, with kids and don't stay up past 10 pm. So I just had to settle on working on the house and golfing. While some people may think that would be awesome and they imagine how much they could get done, to be honest, I didn't like it at all. I didn't like to be separated from my kids for that long (and my wife too). Obliviously this past year has been pretty stressful and intense, but it was always comforting to be able to have Lauren near me. I don't like the feeling of being alone in a dark quiet house, surrounded with pictures of the family, mostly during the good times, the mind tends to wander. But fortunately, the Shiu's invited me and the McGowans over for a bbq, so that I wouldn't go hungry. While the bbq helped, I was so nice to see my family on Sunday.

Tomorrow, we are heading up to UCSF to be there for Auntie Say-Say's (Sarah) operation. She will be enduring her second brain surgery since August. In technical terms, as explained by the neurosurgeon, if the tumor was an orange, Sarah's first operation removed the body of orange, but left the peel. This 2nd operation is to remove the peel. What really surprises me is how two neurosurgeons and/or radiologists can look at the same MRI and come up with different conclusions. I assumed that MRIs are black and white, either you see a tumor, or you don't see a tumor. This is the reason that Sarah is having surgery at UCSF. After reading the MRI, her doctor in Long Beach believed the area in question was edema (swelling) and Dr. Finlay (Lauren's doctor) thought it was leftover tumor that wasn't removed during the 1st operation. So he recommended that she get a 2nd opinion from a renowned neurosurgeon at UCSF who concurred with Dr. Finlay and believed he could safely remove the rest of the tumor. BTW: this information is all second hand (from Hilary).

Auntie Say-Say (26 years old), who went up to SF on Monday, will be undergoing tests all day today and is scheduled for surgery tomorrow (Wed.). I can't imagine what goes through a grown-up's head, knowing that someone will be cutting open your head and actually touch your brain. Does the fact that Sarah is a nurse help or make it worse?? Either way, understandably, she is getting more and more scared and worried. Hopefully, you're not reading this post, but if you are, we love you Sarah, and will see you on Wed. night.

In light of everything, this seems a little trivial now, but in regards to Make-A-Wish, I've gotten a few responses from my last post about Lauren's MAW fiasco. The word is that due to the current economic conditions, donations and contributions are down, so MAW is trying to save money and limit the costs of the wishes. Which explains a lot and is understandable, not that it's okay. Like I said before, hopefully this is a blessing in disguise, and Lauren can pick her own wish when she is old enough. Hopefully, MAW will still be around when she is ready.

Here is a post of a post that someone forwarded to me (I'm just going to cut and paste it):
"MWF approved Nathan’s wish on Sep 2008. It was a total negative experience from the beginning. He wanted to have a one-on-one encounter with sea turtles. The wish granters found that hard because of his age so we convinced him to swim with the dolphins instead. The wish coordinator told us that Nathan was too young to have a one-on-one with dolphins (he is 5) and our option would to join a group encounter – far from a UNIQUE experience. Thanks to this board, I know that is not true so I called 5 places that said his age is okay to have a one-on-one. Called MWF and after much argumentation it was an okay. We then set a approximate date since the medical forms would expire in March 09. The wish coordinator said she would fax the forms again after expired and call us to set up a formal date.

Instead of a call I got a letter from MWF basically saying that travel wishes granted in 2009 are canceled until further notice due to “tough times”. I called again and after more argumentation (after all we had the last 2 weeks of April blocked with our employers for the trip AND his wish was granted in 2008) they gave us an okay. Unfortunately, It took 1 hour and 45 minutes on the phone having to hear them say “at this point is a musical chairs game”. From where I stand I felt awful having to fight for something they promise my son, then said NO, then said YES and left me with a feeling that I got to “sit on the musical chair” so someone had to live their wish behind. Is the MWF purpose to bring something positive and magical to such a terrifying situation or have I missed something?

As it turns out they schedule us for April 20-25. They faxed the forms over to the Onc and made me call them to rush the forms back. Then I made the mistake to document our awful experience to the Los Angeles Chapter CEO. I sent an email explaining the process and asking them for all the information we can have (dates, numbers, hotel, everything so I can double check the itinerary). This morning I got a call from the CEO herself saying NO again to our son’s wish. I listened to her tell me about layoffs, no budget, no money for payroll, no sponsors. When she was finally done I told her the wish was granted last year, the coordinator already have the forms and gave us a date. She then said the coordinator has no authority and she (Mrs. CEO) had to get another phone call…and…she HANG UP ON ME. Again…her last sentence was “I have to get another phone call” and she hang up…She f&*^%$ hang up.

I’m beyond disappointment. How Am I supposed to tell Nathan we are not doing it? How can I accept that they granted a wish they didn’t budget for? Why us? I want to talk to someone from MWF that actually can help this people to better deliver their messages. The whole thing is just wrong.

Anyone from Los Angeles or else in the same boat?