Milestones
It's amazing how some dates just stick in your mind. I will always remember Lillian's birthday, the day she was diagnosed and the day she died. Yesterday marked the one year anniversary of Lillian's diagnosis. When life changed in an instant. We knew something was seriously wrong and I even suspected a brain tumor since an internet search revealed a perfect match of symptoms. But nothing could have prepared us for the words "we've found something." Just look at this picture taken the day before her diagnosis. Does this look like a kid with cancer?
From here out, it will just be milestone after milestone. I hope to honor Lillian's battle by reading her blog as each entry was posted a year prior. At this moment last year, Lillian was in surgery to remove the tumor. Jeff and I ran home to pack having arrived at the hospital the day before with nothing but the clothes on our back. We wouldn't return home for 9 days, the day after her 2nd birthday. And that was after convincing the rehabilitation staff at Emmanuel and the insurance staff that Lillian would be better off sleeping in her own bed and commuting for 4 hours of daily rehab.
What pains us most is the memories of all she had to endure. The shots, surgeries and stem cell transplants not to mention chemo. It's so contrary to your every instinct as a parent to allow your child to be tortured. And yet, we were willing participants. We let her suffer for the hope that she might live.
As one cancer mom said, "you see so much suffering. I always knew it was out there but now I see it firsthand." I may have the privilege of knowing firsthand a dozen or so kids battling cancer. God has uniquely equipped me to stand alongside them during their fight and for that I am grateful. But there are thousands more suffering in the name of hope. Over 40,000 kids are battling cancer right now. And the incidence of childhood cancer is growing with no explanation. It is the number one killer of children by disease, more than asthma, cystic fibrosis and pediatric AIDS combined. Yet the funding for childhood cancer research is nominal and has been cut! I gotta tell ya, I'm not okay with that. So I joined an online advocacy network on http://www.curesearch.org/. They notify me of any cancer related bills so I can send a pre-written e-mail to my elected officials. Couldn't be easier.
Right now there is an effort for $150 million federal investment to find a cure for childhood cancer called The Conquer Childhood Cancer Act. Visit curesearch to send a letter to your congressman encouraging them to support this vital piece of legislation.
The bright spot in my day yesterday was watching one of the kids in my cancer community, Boey, get a brand new house courtesy of Extreme Makeover: Home Edition. What a blessing to see another deserving cancer kid receive such a generous gift on this memorial day! Maddie, Alley, Lexie and Maddy also had cameo appearances. Check out this video of Boey talking about The Childhood Cancer Act.
13 comments:
It's been a year...man, I was just thinking about her birthday...and wondering how we should honor it. The time has gone so fast and yet, it seems like just yesterday you called to tell me "they found something". You guys are in our thoughts a lot this week and next as you meet w/the adoption counselor and as we remember what a special girl Lillian was.
Traci
I also cannot believe it has been a year! It doesn't feel like that long ago when I got the call from Linda. I will never forget that moment in time. You guys are still in my prayers through this journey and your new journey. Can't wait to hear updates about how the adoption process is going!
Thanks for letting us know about Boey's video. Watched her last night and cried and again today. What an amazing and special young girl. I am so glad that they could get her a new and safe home. She is not only a fighter of her own cancer, but truly a warrior for all the kids with cancer. An inspiration to all!
Beth
Lori- I have no words...I marvel at your continued strength. I keep Lillian's picture on my dresser to pray for you and Jeff daily. No one can even know what you are going through unless they have been there. I thank you for sharing your journey. God bless you, and your memory of Lillian.
Dorothy Garcia
Hey friend,
I'm praying for you. We watched the show last night and I realized what time of year it is for you and Jeff. We are so committed to standing with you (and the many, many others) in the fight against cancer. Thank you so much for sharing your journey with us. I feel so blessed to be your friend.
Love you sister!!!
While the people that I have loved and lost are never very far from my thoughts (if they are not the immediate focus of them),thinking of them around those dates if signifigance packs a little extra punch. The picture you posted of Lillian is one of my favorites. It was nice to see it again today.
If anyone missed the Extreme Makeover episode, ABC.com has full episodes that you can watch on the internet.
Michelle
I remember talking to you when you found out they found something like it was yesterday. I am thinking of you both this week, and remembering Lillian.
Love.
Amber
I remember you calling me to tell me they found something like it was yesterday. I am thinking of you and Jeff this week and remembering Lillian.
love.
Amber
It was great having lunch with you last week. I look foward to our monthly! You and Jeff have been on my heart and mind this week. I remember that day a year ago b/c I had lunch with you right before you two took her in and your words "I think she has a brain tumor" still ring in my ears. I prayed then and I continue to pray for you both and you're community. As I watched Boey's family Sunday I wondered whether or not you knew her. We WILL find a cure someday that is my one true wish.
Erin
Lori,
I just read your last entry. I will definitely be praying for you. You must be going through so much, having so many different feelings. I have to be honest, I didn't think about cancer that much until this last year. I guess it was just some far away disease that I never really thought much about, never really knew so many precious children had to fight it each and every day of their lives. When Chelsea was diagnosed though, it suddenly struck me that it's a very real thing and something we need to fight against with all we got. Now I've come in contact with so many children who have it, and I don't know what to think, except now I pray "God, help us find a cure". That is my hope and my prayer. Seeing the picture of your Lillian just breaks my heart. I didn't have the honor of meeting her, but just seeing her picture I can see what a special sweetie she was and how she was a girl shining God's love. I'll be praying for you and your husband, and all those families out there who have been affected by cancer, and I'll be praying for a cure. We gotta find a cure. After watching the show with Boey, I was even more convinced of how much we really need a cure for this awful disease. I know I haven't met you, but I do love you, Emily
One day, you will meet Emily - what a sweetie! She has been an encouragement in our lives for years now... and especially this last year.
I've copied much of your last post onto my blog... I couldn't say it better or agree with it more. People need to hear.
Love you and look forward to our next visit.
I love the fact that you are reliving everything day by day to honor Lillian. I totally see myself doing the same thing. When I read this I actually thought of the day that I sat reading your entire site of Lillian backwards...how hilarious, since carinbridge starts with the most recent post, I started there, at the end, with her memorial, and went backwards through her journey. I only wish we could have met you during those final weeks, when we were 1st being diagnosed.
Sending tons of love and prayers your way as you go through the journey all over again.
We were at an outdoor mall with a pond, the boys asked if they could make a wish, so I gave them coins to throw in. Unprompted and without hearing each other (they were at different ends), they each threw their coins in and their wish was that Lillian feel better. Obviously she is on all of our minds. I reminded them that she is well and in heaven with God watching over her. I remembered back to her memorial service and thought how fitting that the boys chose this weekend to "throw a stone into the pond". Since it was exactly what Lillian would have done. I think we will plan to remember Lillian's birthday by throwing stones or coins into the pond each year around her birthday.
You are both in our thoughts this week, as I'm sure this is an especially difficult time. I love the picture you posted at the top of this post and am glad to have such a beautiful memory of her. It really portrays her innocence and sparkle.
Traci
We don't know one another, but we met very briefly in the PICU earlier this year. You were in the room near the hallway to the door...the sounds of those doors. I never got your name, and I didn't tell you mine, because it didn't matter at the time. I may have mentioned that my son had a shunt as well, not sure, not worried about it. I was struck by your daughter's pure beauty, and I recognized something in your eyes. The look of the PICU mom. I stumbled upon your blog recently, by accident, and recognized your daughter's face. I am sorry she is not with you now. We also lost our son after his battle with leukemia...I am sending you good wishes for this challenging time of year...
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