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!!!!
Wednesday, June 30, 2010
Wednesday, June 23, 2010
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.
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 cancer-free! Thanks SO SO much for all of your thoughts and prayers!