Wednesday, June 30, 2010

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 

Wednesday, June 23, 2010

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 
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. 

Friday, June 18, 2010


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 
Thanks SO SO much for all of your thoughts and prayers!