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!

Great NEWS!!!

Lily's MRI results is still clear!!!  This MRI was more nerve-wracking for me 
since it was the first MRI since she was off chemo so I actually got to breath a 
HUGE sigh or relief when Lily's oncologist told me the news. 
 
Tomorrow, we will be meeting with Dr. Lam, the surgeon, who will be removing 
Lily's port-a-cath on Monday, September 27 at 11am so if you can say a prayer 
for her then, I'd really appreciate it.  Although this is a routine surgery, it 
is still a surgery and Dr. Lam is a skilled surgeon but I'm sure he wouldn't 
mind the prayer support :-) 
 
Thanks again for all your prayers and well wishes!

Time again

I can't believe this past 3 months snuck by me! Lily's first MRI after ending 
her chemotherapy is this coming Wednesday, September 15. Can you please say a 
prayer for her that she is still tumor-free? If all goes well and there are no 
signs of her tumor coming back, she will have her port-a-cath removed at the end 
of the month or beginning of October.  This will be a welcome relief because any 
fevers that Lily spikes after her port-a-cath is removed won't automatically 
mean a trip to the ER and hospital admittance. 
 
Two and a half weeks ago we celebrated a HUGE milestone of Lily - she took her 
first steps on her own and is continuing to walk further and is now learning to 
stand up without  using any props like the wall, couch or people :-) We are 
hoping she will be off and running in a couple of months. Although she does have 
to see an orthopedist to most likely get an ankle brace for her foot but this 
will hopefully aid in her walking more balanced. 
 
Thanks again for all of your love, support and prayers! I will email again soon 
with the results from the MRI.

God's Neverending Hand in My Life

On Saturday, we attended a "Brain Tumor Survivor" conference at CHOC and one of 
the presenters was Dr. Loudon, Lily's lifesaver and neuro-surgeon. We hadn't 
seen him in about a year and BOY did a flood of emotions come rushing back. He 
is very straightforward and tells it like it is, so when he did his 
presentation, I got a slap of reality and facts that I guess I had swept under 
the rug and didn't want to think about. Also other presentations, talked about 
the many after-effects of chemo like infertility, fatigue, vision loss, memory 
loss, etc and then they had a lunchtime panel of cancer survivors along with 
their parents. It was a very informative conference but it was also very 
sombering. There was a lot for me to process especially the new fear that there 
is a possibility that Lily could have a secondary cancer, a small chance but not 
something that I hope I will have to deal with in the future. So I was feeling 
kind of morose after the conference and on Sunday I went to church and BOY was 
God looking out for me! I was sitting there at church and this family went up 
for the offering and they looked SO familiar and it turned out the mother and 
daughter were at the conference and were part of the lunchtime panel. So after 
church I walked up to them and asked them if they were at CHOC yesterday and 
introduced myself and told them a little about Lily. The daughter, was diagnosed 
with a brain tumor when she was 5 and is now 15 and in remission! She is such an 
inspiration! The mom shared her journey with me and when I was telling her about 
Lily, she offered some insight since she knew exactly what I was going through 
and shared some of her experiences, as much as a 15 minute conversation could 
fit in. She gave me her phone number and told me that if I ever needed to talk 
or had questions, to give her a call; which I am sure I definitely will. I am 
just SO amazed at how God shows me that He is there and taking care of me and 
when I am feeling low, He makes sure to send me signs to let me know that there 
is HOPE!

Wonderful News

Wonderful news to share!!! Lily is done with chemotherapy!!!  Her oncologist 
came back from Vienna and told us that one of the seminars she attended gave a 
short presentation on Lily's cancer - congenital glioblastoma and she talked to 
the leading research oncologist afterwards and they said with complete tumor 
removal and 1 year of "lite" chemotherapy the prognosis was good on the number 
of cases they have studied. So since Lily has had an equivalent treatment her 
doctor gave us the option of ending her chemotherapy which we decided on and her 
doctor was happy with the choice we made. She will still need to have MRIs every 
3 months still for the next year and then if all goes well they will change it 
to evey 4-6 months the following year. She will also get blood drawn just to 
monitor her and will get her port-a-cath removed sometime in September. She is 
still considered immuno-suppressed for one year so we will need to be careful 
with her during the flu season but we are trying to take advantage of the nice 
weather and go outdoors more. I think cabin fever has hit us! 
 
It feels surreal, I'm waiting for it to sink in that we don't have to give her 
chemotherapy anymore but it'll probably set in next week when I have to take her 
to get her labs done but don't have to administer the chemotherapy to Lily that 
night. 
 
Please continue to keep Lily in your prayers and thoughts because I totally 
believe that all of you guys have played a vital role in Lily's fight against 
her cancer and she wouldn't be doing so well without it. One of the nurses told 
me that the real anxiety starts now that she is off chemotherapy but I think it 
will always be in the back of my mind 'what if the tumor comes back'; I just try 
to push it way way back in my mind but all of your support helps ease my anxiety 
especially the couple of days before and after Lily's MRIs...so thank you thank 
you thank you!!!  And I am SO SO grateful that I can share this joyous news with 
you all!!! 
 
I've attached a picture of Lily standing, she has learned to pull herself up on 
the couch and is cruising the furniture and can stand for a couple of seconds on 
her own without any support.  We're hoping she will be off and running by her 
2nd birthday.