We just began the toughest round of chemo for Lulu yesterday. There’s a reason for the name: Delayed Intensification. It’s just loaded with all the ingredients for an intense drama including 9 kinds of chemo, and, ooh our favorite thing: steroids!!! I don’t know how many of you have a spirited 5-year-old girl, or have met one, but ours walks the razor’s edge between charming and bratty on a daily basis. She’s a creative force, so full of life it seems impossible that it could be contained in this 35 lb. package. She also has the wit of a teenager; including the sarcasm. Even the word Mom can be delivered with more varied intention and meanings than previously thought possible. Depending when you meet her, she will sweep you off your feet and climb into your heart in the most charming, playful and engaging way, or drive you crazy with endless chattering and obnoxious demands for attention. So … let’s put this on steroids! Based on our last experience, I will be calling often, tag-teaming with Jimmy and Grandpa if he’s still here, telling lots of stories-that-will-be-funny-later, and planning my occasional escapes to gather myself enough to go back into battle.
That’s the easy part. The 9 kinds of chemo are more challenging. I’ve been running through a lot of emotions based around this leg of treatment. I’m hopeful since it’s our last giant hurdle to cross before starting maintenance for 2 years, and it feels like there might actually be a light at the end of the tunnel. The hold-your-breath scary part is there are no guarantees. This feeling of unsure footing has been amplified by recent events. We made a few friends on the H.O.T. (high risk) unit during our long stays at the hospital. I was just thinking about how well everyone was doing, and how lucky we all are. It starts to feel like you’re having coffee or beers with your friends, and forget you have children who are all literally fighting for their lives. I told you about Bo, who had the rug pulled out from under him and his family when his leukemia came back. He and his mom are at the hospital again, finding their strength and gearing up to fight once more. We have another friend who is a mere couple of weeks ahead of Lulu. She’s almost 4, and one of the cutest things I’ve ever met with huge blue eyes surrounded by thick wings of black lashes. She and Lulu hit it off immediately. After doing as well as our little one, she is suddenly in the fight of her life. The drugs, not the disease, are tearing her tiny body up. After starting delayed intensification, the toxic drugs broke down her intestinal wall, allowing bacteria to enter causing typhlitis, and her lungs have filled with fluid from an unknown origin. She is on a ventilator in ICU, just had surgery and I can’t stop crying for her. I’m so worried, and hope she finds every bit of little girl magic and chutzpah to pull through. I find myself wanting to hate these drugs with every ounce of my being, but I can’t. If they don’t kill her, they will save her (and my daughter’s) life.
I haven’t really asked the big WHY question too much during this time. I am now. I know both of these families have as many people loving and praying and thinking of them as we do. I’m not overly religious, but I do believe in a God, a force and an energy that created everything. I’ve heard, “this is God’s will” and I just don’t buy it. I don’t think God would ever choose to take one child’s life, and save another. It can’t be. Can it? I’m not losing faith, I’m just wondering. Maybe God doesn’t really work on that level? Maybe we were all just given free will and we’ve messed up this earth so much that we are creating all these diseases of the body, and mind. Our food and environment polluted … Cancer; rampant, cure; toxic.
I’m feeling pissed off, confused, scared yet hopeful. Maybe it’s been left in our hands with God to guide us, not fix it for us. If so, we need to change it. Quickly. We need to change the way we eat, purchase, process, work, live. We need to start wherever we can, in big and small ways. We must be part of the positive change, and not the toxic buildup. We need to stop filling our minds up with entertainment that thrives on hate, food that poisons us, work that kills our souls and our earth. I certainly don’t have all the answers and solutions, but I hope this will start a conversation. Maybe if we begin with ourselves, we can create some peace within that can be shared with all.
Please send prayers, good juju or whatever you’ve got to Bo, Kate, Lulu and everyone at Children’s, especially the HOT unit.
Thank you,
a.l.l. of us
a.l.l. of us 
Jan Grimes
/ May 10, 2012I am no longer saying my prayers quietly – I am now screaming them in hope that the powers that be will hear, not just for Lulu, but for all of the kids. I can really understand your frustration, anger, hatred, hope and all of the rest of the million emotions you must being going through on a daily, if not hourly, basis.
I have often felt and said that Lulu, and your entire family, has really taught me a lot through this process. I am here to say that I have learned the lesson, so this can all stop now! I will forever remember the multitude of leasson – I promise. Just make it stop for all of the kids!
The best goal I can think of is – no more sick children. It is just not fair. I know Children’s Hospital is a great resource, but I would like to see them go out of business because there are no more sick kids!
T. Marie
/ May 12, 2012Jan, keep screaming! It’s so hard to feel helpless in these situations. If you feel drawn to do something, I know the hospital always needs platelets, even more than bone marrow donors. No pressure. I just know it’s helped me to DO something, even in writing this blog, to feel a little less helpless. Love you.
ashepherdgirl
/ May 10, 2012Hello T. Marie,
A friend shared your blog with me. My prayers will continue not just for Lulu but for you. For as much pain as they feel physically, we feel emotionly. We had some friends who just left children’s with their son Scott, maybe you knew them? He is a teenager and has lived through two battles with his leukemia.
My heart always goes out to the least of these and children especially. Please let me know if we can support you in any way. Be encouraged that God IS near and he weeps for all our suffering. Peace is not the absence of trouble, but the welcome presence of God for our comfort during trouble. I say this as someone who has walked some very real pain and someone who has been angry.
Love and prayers to you,
Lisa
/
T. Marie
/ May 12, 2012Hello,
I have to thank you for your message, and especially the music video. I must admit, I thought it might be over-the-top religious, but it was absolutely beautiful. I’m forwarding it to some friends who might be comforted by it as well. Thank you.
Do you have a blog? I couldn’t find it.
ashepherdgirl
/ May 13, 2012http://pocketfullofmustardseeds.blogspot.com/
Kathy Wood
/ May 11, 2012Hi T,
I don’t even know what to say sometimes. I read all your blogs and am just in tears, yet I smile and laugh as well. Your courage is unbelievable. I want you to know that we think and pray for LuLu, Max, you and Jim often. I know personally a lot of your emotions, and I so agree that little by little we have a choice to help this fallen world. I think it is okay to question God, definitely since he knows your true feelings anyway. But I do believe we live in a fallen, sinful world with so much temptation. He will not always fix it, as you said, but it is our trials that bring us closer to him, and if we seek Him, He will be right at our side to help us get through. He wants us to go to him, just as we are, nothing formal, no big words, just pour our heart out to Him. I would love to meet LuLu, my girls too if that is ever a possibility. But if I could come down myself, I would love to come for the day and give you a break and do crafts or a princess tea party or whatever she would like to do if that is even a possibility. If that isn’t possible I can also clean and do laundry or anything else you would need for a day. Please let me know how I can help. Take care.
Blessings,
Kathy Wood
T. Marie
/ May 12, 2012Kathy,
Thank you for your comments. I know how deep your faith is, and I’m sure it helped carry you through your own cancer journey.
I can hardly believe you’ve never met Lulu. She would adore your girls. In 2 months, if all are healthy, we can set up a playmate for them (and us!).
Much love,
T
Stephanie Raffelock
/ May 11, 2012It’s a odd little community of bloggers–those of us on-line writing our mind and heart. And then to stumble upon you and the Grace and courage conveyed…remarkable. I read your blog, because it breaks open my heart each time I do and it reminds me what truly matters in life. As Billy Joel once sang “I have been a fool for lesser things.” I nominated you for a Very Inspiring Blogger Award. You probably don’t care about such things, and you don’t have to do anything with it–but what I want you to know is, you and Lulu have a wide touch…beyond family and friends…into the internet ethers, inspiring and blessing people like me who bear witness to this sacred dance you do with your daughter. You and Lulu are in my heart and I am grateful to follow your story and to bear witness to its awful tenderness. Here is the link to the blogger award thing: http://callingoftheheart.wordpress.com/2012/05/11/seven-things-homework/
T. Marie
/ May 12, 2012What a wonderful message to wake up to Stephanie. I’m so grateful, and hooe this will help bring more people to my site that might be helped in some small way with their own journey, whatever it may be.
I look forwad to reading each and every entry if yours, you’re a true talent!
healingmaya
/ May 11, 2012Such a beautiful little girl. Prayers for her and all the children fighting.
T. Marie
/ May 12, 2012I am following your and Maya’s journey as well. Please feel free to contact me any time if you need someone to talk to who gets it. My email is tmarieforallofus@mail.com and I’ll give you my phone number from there.
Jenny Mendenhall
/ May 12, 2012Hi T. Just saw this story on TV about a video the kids at the Seattle Children’s Hospital with the Kelly Clarkson video called Stronger. Perhaps you’ve seen it already. Here’s a link to the story:
http://yourlife.usatoday.com/health/healthyperspective/post/2012-05-09/kids-with-cancer-what-doesnt-kill-you-makes-you-stronger/690354/1
T. Marie
/ May 12, 2012I just saw this video last week and LOVE it! I’m so glad you posted it here :-).
Linda
/ May 13, 2012Hi T,
I love your honesty.
As I go through life, and it brings more heartache and difficulties than my plans would have included-I have questioned God and the life of faith I claim to follow. But, I am slowly learning- the experiential learning not head knowledge learning- that God is always good and that His will is that I can have a life with Him-and that life, as wise little Lu so eloquently reminded us, will be filled with storms and rainbows, storms and rainbows….
T. Marie
/ May 16, 2012Thanks for this Linda. Beautifully put.