This has been the week of people telling me " I don't know how you're dealing with this". So, for all of you wondering here it goes.
We try to keep some normalcy at home. Kids go to school, kids argue, kids get on each other's nerves, kids play video games. Husband goes to work, comes home from work, has a beer, reads, plays on the internet and deals with mom when she's having a breakdown. Mom runs, works, coaches, goes to boot camp, cooks while the music is on, sings along to the music, talks to her friends and drinks some wine, as needed. So, stop asking how we are dealing with this. Cause this is the answer! I understand, to most people this is an unimaginable situation, however it is our situation and our "new normal" and we have to roll with the punches.
So, our routine now includes weekly visits to a hemotologist/oncologist. So what? We are certainly not the only family dealing with a sick child nor the one with the sickest child out there. We need to stay strong and focused and so does our village!
There's this song called Ordinary Miracles, the master Barbra Streisand sings it. I LOVE Barbra! Most days I think I can totally sing with her! Hahaha! My kitchen has great acoustics! Music is another one of my many therapies. It seems, that lately, songs are taking on a whole new meaning.
Ordinary miracles. Do you know that the new drug Ric has to take, starting next week, is a drug used to fight Lymphoma? So, all my efforts with Team in Training and The Leukemia and Lymphoma Society are working now for my family and all Evans families out there. Do you have any idea how AMAZING it feels that we played a part on that? Just because we decided one day to try and change the world and do an ordinary miracle. "Just as pebbles make a mountain, raindrops make a sea, one day a time, change begins with you and me". Seriously!! Is Barbra talking to me??? And not only to me, but to all the amazing people I know that have either participated or donated to TNT. To all of you, THANK YOU! Thank you for being "quiet heroes, living quiet days, walking through the world, changing it in quiet ways. Ordinary miracles, like candles in the dark, EACH and EVERYONE of us lights a spark!" Thank you for taking part in repairing the broken pieces of the world.
Our walls are tumbling, the mountains are moving, the winds and the tides are turning. However in joy and quiet wonder we will see miracles multiply. "Hope can spring eternally", we will plant it and it WILL grow cause all you need is love and we have plenty of that.
Ric starts Rituximab on Monday. This is intravenous, but we shouldn't see too many side effects. Still, we have to sit there for a few hours while the medicine goes in. The way I see it we have two choices. We can either be a ray of light to all those kids (and parents) that will be there taking their chemos as well OR we can go down the deep dark hole of depression. Hmmmmm.....which one to pick?? It's not the hole, I can tell you that! Ric is in good spirits and understands that this is part of the road to remission. From what I've read 60% of kids respond to this treatment. Fingers crossed!
Stay positive. You seem to have a handle on that. Others have been down this road before. It is full of monsters but you will overcome if you believe. If you are interested in a brief summary of our nightmare and victories, you may read it on my website at (http://passionwind.com/saga2010/escn.htm). It is not formatted because I have never published it. It is not in the navigation structure.
ReplyDeleteI kept a diary of my last major battle with ES on my webiste http://passionwind.com. Just follow the links in the upper-left margin of the page if you are interested.
May God bless your family and give you healing and comfort.
Hi Joe!!! Thanks for your comment!!!! I read your story, have you ever been tested for ALPS??? From what I gathered, it seems blood disorders run in your family. From what little I know from the research I've done, ALPS is hereditary and it manifests itself pretty much like Evans. My son has been tested for ALPS, even though there is no family history, but apparently it is something they are testing for now regardless. Thanks for sharing your story with me!!!! I saw you had a twitter handle, just followed you (@lilipickens). Bringing awareness to this is key!!!
DeleteStay strong!!!! Hugs to your little girl!
When I am fundraising, I tell people how the research financed by TNT cross-pollinates to help in the fight against breast cancer, AIDS, and disease processes. However, this is the first time I have "known" up-close-and-personal, a child impacted by a drug first developed for use in leukemia patients. I swear my steps will be lighter as I will think of your son, and others like him, as I run. When dealing with your "new normal" make sure you leave a little time for yourself. I have been the parent of a special needs child. I have been a full-time caregiver of gravely ill parent. I lost myself in the process and it was a long fight back. Some days I am still searching for myself. Say "no" to requests from others. They will understand... or not. Family first. I am honored to run for TNT and be a part of "Ordinary Miracles." Thank you for some much needed inspiration. Love you!
ReplyDeleteThanks for the kind words Sunshine!!!!
ReplyDeleteHi - just have to say after reading your post, I think you've got an extraordinary spirit and positively determined outlook. Thank you for sharing your story and the insights as to what you and your family are experiencing. Sending caring thoughts, blessings and BIG hugs! - Nell (aka @RoadRunnerFL)
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