New old pictures

I went through some earlier pictures of Lily and added some to the posts.

The pictures from the hospital still stirs a lot of emotions.  Seeing such a innocent child being in a vulnerable situation still hits hard even after 2 years.

But then I see Lily and realize what an long way she has come and everything feels a lot better.  We still have a long way to go, but we are so blessed to have her in our life.

A "normal" life

After almost a year off chemotherapy, things have been settling in to a more normal routine. If you can consider two session of OT, two sessions of PT and two sessions of speech therapy every week, MRI and oncology visits every 3 months, neurology every 6 months besides the normal pedriatic doctors visit and the extra visits to catch up on the immuninzations that was missed during the chemotherapy. This is still a lot easier than the strain of chemotherapy and all the possible complications that you have to consider during that time.

Recreated

I have finally recreated a blog based on the e-mail updates that my wife sent out to keep people posted on Lily's progress during her fight with the glioblastoma multiforme (GBM) that she was diagnosed with at 4 month of age.

The postings are more or less directly copied from these e-mail, so Gennie should have all the credit for the content in this blog.

Camp

This is the first post written by me, Magnus. The earlier post are all Gennies e-mail updates that I added to this blog.

We spent the weekend at camp thanks to Camp Ronald McDonald for a Good Time.  The camp is specifically for pediatric oncology patients and their families and they have medical staff available for the patients at all times.  We had a wonderful time with families in similar situation as us and a very helpful staff.  Danika loved the camp life and was ready to go to the next camp even before we left.  The twins (Sammy especially) loved roaming around the grounds and the volunteers helped keeping track of him, which is a full time job :-)

It was our first real "vacation" since Lily and Sammy was born and not only was it relaxing, but interacting with the other families was uplifting.  Spending time with people that share a situation like a kid with a very serious illness and see the strength this give to families gives insight in your own situation.

Looking forward to go back next year.

ALL CLEAR for Lily!!!

Whew after a crazy last 4 days, the oncologist called and said that Lily's scan 
results are still clear!!!  Yippee!  Thanks SO much for all your emails, 
thoughts and prayers!!!  I was reading the emails during Lily's MRI while in the 
waiting room and they helped calm me. 
 
The MRI almost didn't happen on Wednesday and we were supposed to get the 
results yesterday at Lily's oncologist appointment but Mission MRI Imaging hired 
a new person who is doing everything by the book so CHOC oncology couldn't get 
the results in time for Lily's appointment since the new person had sent it to 
medical records instead of faxing it to the oncology clinic.  I swear you would 
think that since Lily gets her scans every 3 months, things would become routine 
but each time something different happens -- never a dull moment! :-)  I'm just 
SO SO happy that she is still clear! 
 
Hope you all have a wonderful weekend!!!

Lily's MRI scheduled for this Wednesday

It's that time again...Lily's 3 month MRI.  She will be having her MRI done this 
Wednesday, March 9 at 9:00 am.  Yup on Ash Wednesday!  So for those of you that 
are getting your ashes that morning, can you say a little prayer that her scan 
is still clear?  And as always, it would mean the world to me if you please keep 
her in your thoughts and prayers the next couple of days. We have an appointment 
with the oncologist the day after her MRI on Thursday, so hopefully they will 
have the results of Lily's MRI at the appointment and I will be able to let you 
all know the results soon after. 
 
The twins just turned 2 last Saturday and I couldn't help getting teary-eyed 
while watching Lily daintily pick at her cupcake and think what a miracle we 
have been graced with.  She's come a LONG way and she's a fighter! So why am I 
nervous about her scan?!?!?  I just can't wait for the day when I won't feel so 
anxious about her scans.  I guess it's just my nature to be a natural worry wart 
but your thoughts and prayers make these stressful scans more bearable and I 
truly believe she is doing well because of it! 
 
So thank you from the bottom of my heart!

Lily's MRI

So Lily had her MRI on Wednesday and that night at 6:40 pm, I got a phone call 
from Dr. Shen, Lily's oncologist, and my heart stopped because I had glanced at 
the clock and saw that it was after the clinic hours. She told me that she had 
just received Lily's MRI results and that it "looked good and that it is still 
clear". OMG did I breathe a great sigh of relief! I was amazed at how quickly 
she got the results and told her so.  Maybe because we are considered frequent 
fliers there at the hospital, since more and more people are recognizing Lily's 
name, they are making our test results a priority.... Or we have an angel 
looking out for us that makes sure our results get expedited! I like that latter 
thought! ;-) Anyways we have received an early and most wonderful Christmas 
miracle and you all have played a very important role with all of your prayers, 
love and support. We will for sure be ringing in the New Year with chilled 
Bubbly!!! 
 
During this holiday season, we wish you a season filled with warmth, love, joy, 
laughter and special memories!