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.

Lily's MRI results

Praise God!!!  We got an early New Year's gift today!  There is no sign of tumor 
recurrence in Lily's MRI.  Thank you so much again for all your prayers and well 
wishes -- they were especially meaningful this time around because of the 
seizure scare, sibling illnesses and all the holiday stress that was going on. 
 
I hope you all have a wonderful and safe New Year's.  Please know that you all 
will be thought of as we welcome the New Year and know how blessed we are to 
have your love and support.

3 months

Wow it's hard to believe that 3 months have gone by so quickly since her last 
MRI.  Lily is scheduled for her next MRI this coming Wednesday, December 23.  
Please keep her in your prayers that she's still clear and the tumor hasn't come 
back. 
 
Last week, she gave us a little scare we had to take her to the ER at 2am on 
Tuesday because she woke up shaking and they wanted to monitor her and run tests 
on her to make sure she didn't have a blood infection. Thank God all her blood 
tests came back negative.  So now we suspect her shaking may have been a 
seizure.  Lily was released from the hospital the next day but on Thursday at 
the beginning of her PT session she started doing some startling motions that 
her therapist suspects were mini seizures.  Lily had an EEG done the Tuesday 
before Thanksgiving and I thought since I hadn't heard from the neurologist that 
'no news was good news' but the oncologist team contacted the neurologist since 
they suspect she was having seizures and apparently her results were abnormal 
(why I wasn't contacted -- is another story) and they have up'd her anti-seizure 
medications and we are awaiting for an appointment with the neurologist.  She 
has had a couple of small tremors which causes me to hold my breath but 
hopefully she won't have any major seizures before we can see the neurologist. I 
am just hoping for a quiet, hospital free holiday :-) 
 
On a positive note, she slowly progresses in development.  Her two bottom tooth 
have broken through her gums so it looks like rice kernels stuck on her gums and 
just today she put a puff in her mouth.  We were cheering her on as she put the 
puff to her mouth!  Small accomplishements for us but great leaps for someone 
who has had brain surgery. 
 
 I hope that you all have a nice holiday spent with loved ones and thank you SO 
SO much from the bottom of my heart for keeping Lily in your prayers.