Catching up

I will try and do some catchup on this blog by posting what has happen this last year, so there will be a number of "old" posts showing up that is backdated to the correct date when they occurred.
Keep checking for more "old" updates coming soon.

Improvised toys...

The twins are coming up with new ways to use everyday items....

San Diego Zoo

The whole family went to the San Diego Zoo for a nice day out. The kids (and grownups) enjoyed the very nice day and the twins got to see a lot of amazing animals in person. I highly recommend a visit to the San Diego Zoo, and if you are local, becoming a member of the Zoo is an excellent value with free admission to both the Zoo and the Safari Park for a whole year plus a number of discounts and other perks.

CHOC Walk At The Park

Each year a walk is arranged to raise funds for the Children's Hospital of Orange County which was the hospital where Lily's life was saved, her chemo treatment was done and where she continues to go for checkups. We are immensely grateful for the excellent care she received at the hospital and would like give back in any small way we can, so for this year we decided to join the walk which go through Disneyland and the neighboring California Adventure Park.

With our friends and family, we created Team Lily which reached 32 members and managed to raise more that $11,000 for this worthy cause.

The Walk day started out really early when more that 14,000 people have to manage to get to the plaza in front of Disneyland, this meant long lines to get into the resort area and the parking lot. We managed to get the whole group gathered by about 6:45am with the start of the walk being at 7am, not bad for a gang of first timers. It was quite en intense scene with all the people walking along the Main Street of Disneyland, both in a positive way with all the support shown to the hospital but also sobering when there was a lot of groups walking In Memory of... or For Our Angel... This makes you realize how fortunate we are with our miracle the is Lily. 

Along the route a number of Disney characters did "cameos" and cheered on the walkers. It all started  Mickey and the MC at the end off Main Street. The MC could not ignore our neon-yellow shirt and gave us a nice "shout-out" on the may by, mission accomplished. At the carrousel in Fantasyland, the Disney princesses was riding around, which got all the girls really excited.

When the walk was before the opening of the park, and the route was all set up, there was certain areas with no people in it at all, so we managed to get a picture of Lily by the castle with no people around! That doesn't happen very often.

Group picture by the giant Mickey pumpkin, I think we will make this a tradition.

When passing from Disneyland to California Adventure, a bunch of the local high schools had their bands and cheerleader cheering on the walkers, it was moving to hear 20 or so cheerleaders starting a cheer for Team Lily, and high fiving Lily as she walked by. I just regret that I didn't manage to record that part of our walk.

After finishing off the walk a Downtown Disney, we had our team brunch at a local restaurant so we could give a small thanks to all the wonderful people in our team which did such a great job fundraising for CHOC and made the whole walk such a wonderful experience. This will be a yearly occurrence for  Team Lily from now on, and even if we might not be able to put this much effort in every year, we will plan for a big celebration and fund raising effort for Lily's  year anniversary when she will be considered cancer free!

Lily MRI Result

Still Clear!!! Thank God!! I was shocked to get a phone call from Lily's pediatrician's office telling me that they had the MRI results. They told me that they think that they had faxed the results right after the MRI -- me and Magnus noticed that the hospital was pretty quiet yesterday so I guess they were able to get out the results right away.

Thanks so much for all your prayers, thoughts and well wishes!!  I hope I am not using up my favors but can you guy's keep my cousin's daughter/my god-daughter, Vivian in your thoughts and prayers?  She is in the NICU and has been pretty stable but developed an intestinal infection and is currently on antibiotics.  The next 24 hours are critical because if the antibiotics don't work they will have to do surgery on her.  She has just been through a critical heart surgery a month prior and is such a fighter but could use positive thoughts and prayers. Also please say a prayer for her parents and her twin sister. Thanks!

Lily update

For some reason Lily's last MRI, 3 months ago, seemed like it took place longer ago than that. I guess it's been a busy summer. :-) Lily is scheduled to have her next MRI on Wednesday, September 21. Can you guys keep her in your prayers?  We are anxiously awaiting for her oncologist to move her MRIs to every 4 months but her cancer is rare so they want to stay on the cautionary stage and keep scanning her every 3 months.

 

Lily has officially entered her 'Terrible Twos' and we have nicknamed her 'Bully Lily'.  She is very headstrong and bosses Sammy and Danika around.  I can't complain because it is this same fighting spirit that has allowed her to overcome the obstacles she faces with the side effects of the chemo, tumor and surgery. She continues to do well in her therapies but her therapists tell me that they have to be creative to make her do things since she is showing her stubborness and fighting them to do her exercises.  She even started telling them "I don't wanna" which has been an effort for them to not bust out laughing.  She had a neuro-psych evaluation and her psychologist gave us a couple of things to watch for but he said that the tests he gave her all had average results which was good given that she had brain surgery at such a young age.  He definitely thinks all the therapies she is getting is helping. Thank God for early intervention programs!

 

As a family, we are getting excited for the CHOC Walk in October! I'm looking forward to our team raising awareness on childhood brain tumors and showing our gratitude for all that CHOC has given to our family.

First Disneyland visit

The twins went to Disneyland for the first time. They had a really good time, but might not be ready for some of the rides yet. Their favorite was Smallworld while Pirates of the Caribbean might have scared Sammy for many years to come...

The fireworks also scared Sammy, he doesn't like loud sounds, specially not when he is tired as after a whole day at Disneyland without nap.