Sunday, June 28, 2009


OK back to the email...I thought I would be able to use my blog as an update site so I don't have to inundate your email boxes but I can't access that site or facebook while at the hospital and since I am here almost 3/4 of my day I have to go back to using my email account.

Wow what a difference a day makes!!! Me and Magnus checked into the Ronald McDonald House last night so we can spend some time with Sammy and Nika since they can't sleep at the hospital. I felt guilty leaving Lily alone but I know the nurses were taking good care of her and she had a pretty good night except for her spiking a fever. When we arrived at her room this morning, she was awake and had the breathing tubes taken out of her. YIPPEE!!! She looks really well and I got to hold her and feed her!!! She's eating well and even left me a surprise on my jeans while I held her. :-) She is crying a bit which is a welcoming sound to my ears since I haven't heard her in 4 days. They are thinking if she keeps stable they will take out the "Brain drain" tube tomorrow. She is still running warm and they are monitoring her for any signs of an infection, which I am hoping will not develop.

Like I said earlier, I don't want to inundate your email boxes so please let me know if you would still like to continue receiving updates or be taken off this list.

Oh some of you were asking me about Sammy...he is doing good but missing his sister. He has his 4 month appointment tomorrow and I am going to get a referral to have Sammy checked for any tumors. The neurosurgeon said there was a slim chance (5%) but for peace of mind I would like to have him checked, just so I could sleep at night and not have to worry.

Also I can't access my Facebook account, so if you get a chance can you send a message to all of the people you have asked to pray for Lily and keep in their thoughts that we really appreciate it and know that Lily would not be progressing so well if it weren't for everyones thoughts and prayers.

Saturday, June 27, 2009

Second surgery

First off I truly believe this email  and the news I am sharing with you all would not have been possible without all your love, support, thoughts and prayers!!!  Lily has made it through the surgery (step 2) of this long uphill battle she will be going through!!!  The surgery started at around 2pm and lasted about 2 1/2 hours.  Dr Loudon was able to take all the tumor out and the preliminary CT Scan from last night shows that there is no swelling and bleeding.  Hearing that Lily made it though the surgery and was in stable condition and that they got the whole tumor out was such a welcome relief, we were finally able to smile for a change.  I feel like I haven't smiled for days!!!
Since Lily's journey to recovery is just beginning and we are still on a take each day as it comes please still keep Lily in your thoughts and prayers.  She's a fighter but she is going to need every ounce of strength she has to get to each milestone to full recovery.
Yesterday my friend Mark came to see us.  He is doing his residency in hospital chaplaincy.  So when we were going through the events of the past 4 days (felt like years) it was amazing to see God's hands in everything even the smallest things like Sammy reassuring me that Lily made it though the surgery 5 minutes before we got the news that she actually did. Or the fact that CHOC had called Dr Loudon to come take a look at Lily that first night even though they basically thought there was nothing they could do for her. Or how the 20% of the tumor had quarantined itself, etc...
These past few days have been humbling with all the things you guys have done out of love and support for Lily and our family.  We are truly blessed to have such wonderful friends and family and to have made new friends along the way.  Also to hear that Lily was being thought of and prayed for by people that we don't even know.  OK I'll stop before I wet the computer and short circuit it. :-)

Thursday, June 25, 2009


You all have truly made me believe in the power of prayer!!!  Words alone cannot express how much our family appreciates all the love and support you guys have given us in the past 2 days (hard to believe since it feels like we have been here for a month or so)!! 
We were given a little ray of sunshine yesterday afternoon and Lily has been stable and has started to move and opened her eyes a couple of times.  The neurosurgeon wants to send Lily back to the OR to take out the rest of the tumor.  The MRI results from yesterday morning showed that there is a demarkation of the rest of the tumor, that appears that the tumor has been self contained and Dr Leudon is hoping that when he goes back in he will see that the tumor can easily be removed.  She will be moved to CHOC of Orange sometime today and then is scheduled to be in surgery at 1pm on Friday which should last about 3-4 hours.
So please continue to keep Lily in your thoughts and prayers especially the next 2 days that she continues to remain stable and grow stronger for the surgery and will get through the surgery just fine and the doctor and his team be able to remove the rest of the tumor without any complications.
I really REALLY really believe that your prayers, love and support have brought us this miracle thus far and have given Lily the strength to fight and get through this ordeal, it's going to be a LONG uphill battle for her but I know you ALL are making a world of difference for her and we thank you ALL SO SO SO much.  Like I said earlier words cannot express the gratitude we are feeling and we are SO SO SO blessed to  have this much love and support.  You are not only giving Lily strength but also are giving us strength to deal with everything that is happening.  My tears have turned from tears of sadness to tears of thankfulness, joy and hope.

Wednesday, June 24, 2009

Medical article

One of our friends came across this...
I came across this article. I’m going to continue praying and will hold on to hope.

Although survivals of infants with malignant brain tumors are worse than any other age group, one possible exception to this rule are the malignant gliomas. Eighteen children less than 3 years of age with malignant gliomas (glioblastoma multiforme, anaplastic astrocytoma and malignant glioma) were treated on the Pediatric Oncology Group regimen of prolonged postoperative chemotherapy and delayed irradiation, (1986–1990). Of 10 children evaluable for neuroradiologic response, 6 had partial responses (> 50% reduction) to two cycles of cyclophosphamide and vincristine. Progression free survivals at l, 3 and 5 years were 54.25% ± 12, 43% ± 16 and 43% ± 23 respectively. Survivals at 5 years were 50% ± 14. Four children were not irradiated after 24 months of chemotherapy due to parental refusal and none have developed recurrent disease. Neither degree of surgical resection, presence or absence of metastases, nor pathology influenced survival but this may reflect small sample size. This study suggests that some malignant gliomas in infants are chemotherapy sensitive and may be associated with a good prognosis. Why infants with these high-grade gliomas fare better than adults is not clear. It is likely that there is something intrinsically different about them that cannot be identified on routine pathologic examination.

Lily to ER

Lily was rushed to the ER at 5:00 pm today because she became unresponsive upon waking up.  They did a CAT scan on her brain and found a mass on her right side and needed to do surgery immediately because it was being bled into.  They removed 80% of the mass but they did a preliminary biopysis and it is stage 4 malignant glioma, which is a cancerous tumor.  It doesn't look good but we are praying for a miracle.  She is sedated as I type this at 2:00 am and her vitals are good but her blood platelets are low so they are running a transfusion on her right now and she is under a paralytic and pain relievers to keep her comfortable. 

Sorry for any confusion if I didn't use the medical terms right, I am still trying to process everything.

Right now it is a wait and see from day to day.  So please keep Lily in your prayers that God's will be done and we have the peace to accept it.