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. 

Ray of Sunshine...

Dr Shen got back from her pediatric brain tumor conference in Vienna and called 
me to share some options regarding Lily's chemo which I am still cautious about 
getting too excited about but am excited about the news. I guess this sums up 
any hopeful or good news I have gotten regarding Lily's illness this past year. 
I am happy to hear it but at the same time I am scared if I write it down or say 
it, I might jinx it. Anyways, Dr. Shen said that she attended a session where 
some researchers did a small presentation on Baby Blastoma which is the nickname 
they gave to 'congenital glioblastoma'. They said that there were positive 
outcomes if they were able to remove the tumor completely and treated the 
patient for a year on 'lite' chemo. Well Lily will hit a year of chemo in 2 
weeks and Dr Shen gave us several options to mull over. We could end the chemo 
by the end of the month or continue until her next MRI in September. She can't 
make a decision for us but she said that the long term effects of chemo are 
still unknown but it would probably be better to not keep her too long on it. We 
will meet with Dr Shen at the end of July to discuss our options some more and 
decide what to do. Of course, since this cancer is still very rare, Dr, Shen 
cannot tell us 100% the tumor won't come back, but she said that 'baby blastoma' 
has been found to be less malignant than adult glioblastoma. I feel like we have 
passed a major obstacle with this news but at the same time I'm scared that the 
tumor will come back when she stops chemo, but of course I worry about the long 
term effects of the chemo. I've started compiling a bunch of questions I have 
for Dr. Shen when we will meet with her. I think I am still in a state of 
disbelief that it would be possible for Lily to end her chemo treatments but I 
cannot wait for us to start living since we have practically put our life on 
hold due to Lily's illness. It's funny because I remember saying a long time ago 
that when Lily gets off chemo we will be out every single day but now that it 
gets closer to being a reality I feel like I am still going to be cautious 
because I want to prevent Lily from getting anymore illnesses. I think I will 
just be happy to be out as a whole family again! This month can't go by quick 
enough!!!! 

A year ago...

WARNING::: Not for the feint of heart and I am letting a year's worth of 
feelings out so there may be some parts that are difficult to read. And I may 
sound a bit manic, but keep in mind this is a year's worth of release. You've 
been warned! :-) 
 
It's hard to believe a year ago today one of my worst nightmares came true. 
Every time I think back on that day, I can still recall it vividly but as time 
goes by the pain lessens and seeing Lily still here with us, comforts me. Wow It 
seems like a LONG time has passed but then again it doesn't. Although there have 
been some very hard times we had to go through, some days better than others, we 
are comforted by the miracle we experienced this year. Admittedly there were 
days when I had to dig real deep because I felt like I couldn't take it anymore 
but God knew what I was going to go through and made sure I had my rock 
("Magnus"), angels on earth ("family and friends") and distractions ("the kids", 
"The Ellen DeGeneres Show" and "Comedy Central"), in place, to make sure I kept 
on chugging even when I thought I had nothing left in me. If there was a true 
test of love, I think I was put through it this year. I still remember being in 
the hospital at 10pm after Lily's first surgery and the doctor and nurses saying 
Lily might not make it through the night and having to prepare myself to say 
'goodbye' but begging God that if it be His will to experience a miracle and let 
her make it and He heard me! "You are my Sunshine" became the anthem and bond 
which Lily and I shared and she still seems to be calmed whenever I sing that 
song to her. It brings tears to my eyes but it helps to know that even when she 
was in the induced coma she heard me. I think in order to witness that miracle 
that night I had to 'let go and trust God'. A real battle because He gave us 
free will but anytime I find myself faltering I have taught myself to close my 
eyes and just hand it over to God because in the end He is the only one that 
sees the big picture. Through the tough days Magnus is always pointing out that 
Lily is still here with us and to not to try to look so far ahead in the future. 
Sometimes I think he is more spiritual than I am ;-) This experience has taught 
me SO much and there are still times I feel really weak but I am EVER SO 
GRATEFUL for the people that God has put in my life to help me and my family get 
through it. It brings tears to my eyes to think back on all the generosity, 
support and love that has been showered on us this past year. We really wouldn't 
have been able to get through it! 
 
Who would have thought that our life could change SO drastically! I've 
rearranged my priorities and trivial things just aren't that big a deal anymore, 
especially things I can't control or change. I'm still battling my Type A 
personality where I want everything planned out but I think I have toned it down 
alot and am probably a Type A and a half personality now ;-) I wish I could say 
that this experience has made me more organized but some days are more 
overwhelming than others and I just try to stay afloat with all the 
appointments, bills and homework. Yes homework, that we get from the therapists 
because Lily's rehab doesn't stop when she sees the therapists it is an ongoing 
thing and in order for her to not fall far behind I try to make sure she is 
getting some kind of therapy everyday. It's amazing how easy it is to forget a 
limb and how your brain will compensate and make things routine even if it is 
not normal. So we have to constantly remind Lily she has a left arm or she may 
grow up not realizing she has one. It's amazing to see the difference in Lily 
and Sammy, where Sammy does things so naturally but with Lily we need to teach 
her. Lily is extremely lucky to have Sammy to watch and see what she should be 
doing next. 
 
Whenever I see Lily smile, which is alot, especially all the things she has had 
to endure in one year, it makes all the sadness and pain more bearable. In the 
beginning of all this, I think one of the hardest things I battled with is 
worrying whether she will be with us the next day, (which made the nights REALLY 
hard) but I think that worry will always be in the back of my head and I just 
have to keep telling myself that no one knows how long they have here on this 
earth. We've basically had to put our lives on hold and try and make life as 
normal as we could for Sammy and Nika. So I am always thankful for the times we 
do get to experience some normalcy but I can't help but feel a little jealous of 
those family's that can just pack up the car and head to the beach or even just 
go out to eat. Or not have to worry about a chronically ill child, but then 
again there is the other side of the fence where we are lucky we can worry about 
a chronically ill child and not be missing one. Since summer season is starting 
we are starting to be able to go out more as a family, but of course it is 
always in the back of my mind...I hope Lily doesn't catch anything. So when Lily 
gets the green light to stop chemo, I think that will be a joyous day but then 
again I know the chemo has helped her to be cancer-free -- double-edged sword! 
If there was ever a concrete example of the 'power of prayer', I think Lily 
exemplifies it. I really do not think we could have experienced this miracle of 
her survival if she didn't have so many people praying for her. My co-worker 
even included her in her religious pilgrimage to Europe! We are SO truly 
blessed!!! 
 
On a nerdy note, my vocabulary has increased ten-fold! I would never have known 
what glioblastoma, PRN, NPO, afebrile, systolic, malignant, cc, EEG, etc would 
have meant if it weren't for the many doctor visits or stays at the hospital. 
Lily has come a LONG way from being diagnosed with Stage 4 brain cancer to being 
able to crawl with an asymmetry. Her therapists have said she never stops 
amazing them and she amazes me as well. Boy will she have a hell of a story to 
tell when she is older! It's amazing the growth and development she has gone 
through and she continues to defy any expectations or connotations that go along 
with a child who has a terminal illness. We are hoping and praying for many more 
years of being cancer-free and for her to grow and continue to show us all the 
miracles life has to offer. 

ALL CLEAR!!

GREAT NEWS!!! Got Lily's MRI results and they are clear!!! I spoke to the 
oncologist yesterday and her MRI looks good, some slight post surgical changes 
but that is to be expected.  The oncologist leaves today for a Pediatric Brain 
Tumor conference in Vienna and will hopefully come back with more good news and 
advancements on the research of her brain tumor. 
 
I know that this will be an ongoing battle until a cure is found but I feel like 
a HUGE weight has been lifted off of our shoulders since she has been 
cancer-free for a year.  Here's hoping for another year of Lily being 
cancer-free! 
 
Thanks SO SO much for all of your thoughts and prayers!

Great NEWS!!!

We got the results back from Lily's MRI results and it is still clear. There are 
no signs of the recurrent tumor.  Thank you ALL for your well wishes and 
prayers!  Like I said in my previous email this scan was more worrisome than the 
past ones because she had skipped a cycle of chemotherapy when she got an ear 
infection, but thankfully her cancer didn't take advantage of the chemo break.  
The doctor said that she truly is a miracle baby but I think the miracle could 
only be possible with all of your prayers and well wishes for her, so from the 
bottom of my heart I thank you ALL!  May you all have a wonderful day/night 
(depending on when you are reading this) and know that your thoughts and prayers 
have made a difference. 

Time again

It's that time again, Lily's 3 month MRI.  We scheduled it for Wednesday, March 
17, St Patrick's Day, hoping for a little luck o' the Irish :-).  Please keep 
Lily in your thoughts and prayers that the MRI results are still clear and that 
no tumor is detected.  This MRI will be a little more worrying for me (not that 
any of them are non-worrying), because Lily had to skip a chemo cycle, because 
she was sick for a couple of weeks with a cough and ear infection. Thankfully we 
survived that illness without any hospital stays. Lily continues to progress in 
her PT and OT and is starting to roll all over the place, we are hoping she will 
be crawling sometime soon. 
 
I've attached a pic of Lily on her first birthday.  She wants to thank you all 
for keeping her in your prayers and thoughts.

Birthday

Just a picture of the twins on their first birthday.

Don't handicap the handicap

Lily had PT yesterday and the therapist said that this is the hardest stage of 
her rehabilitation - she knows what she wants and any therapy exercises she 
doesn't like, she will fight. So as gut-wrenching as her cries may be when we do 
the exercises, I have to keep doing them because I don't want to stunt her 
development. Plus she is at that stage where she is smart and if I do things for 
her, she will expect me to do them for her all the time. So little things like 
pushing her on her lil 'push and ride' and not letting her learn that she can 
push it herself will hinder her later. Stuff I didn't even think of when Danika 
was her age. I guess that's why he have a therapist for Lily so she can teach me 
new ways of thinking and correct the things I take for granted.