I can’t believe it has been two years since I’ve written an update. I continue to receive emails from parents who are just starting down the pediatric melanoma path and are scared and I think this blog has brought comfort to families who realize they aren’t completely alone. I have “met” so many amazing moms and dads and Little Warriors and though I am always sad to welcome them into our little fold, I’m gratified to know we are here for those who need us.
I’m now part of a small group of people who are true advocates for the Littlest Warriors of the beast. These folks are rainmakers in their own small (and not so small) ways and because we are beginning to band together through the amazing power of social media, I believe that the families who come after us will have MORE answers, MORE options, MORE hope! We can change the future.
With that in mind, I’m in the process of revamping this website and making it more what I envisioned. I want this to be a resource for new families; A safe place for them to come and have their questions answered without the gripping and terrifying fear that comes when their research brings them to adult melanoma sites. Melanoma is very different for children and because it’s so rare, we don’t even know all the ways or reasons for that. We need our own space.
The most common question I’m asked when I’m emailed by a new parent is, “How is Rachael doing?” I think people are afraid because it’s been so long since I’ve done an update! Rachael is now over four years No Evidence of Disease and is doing fantastic! We now only visit Dr. Hughes and MD Anderson every six months and though we are always checking out her new spots, nothing has given any of the doctors a reason for concern. Rachael continues to wear hats and sunscreen and as she has gotten older, her understanding of melanoma grows but I think for her, her own experience is becoming a hazy memory. Of course it’s winter here so it’s easier not to think about it when the UV count is 0 outside but melanoma is certainly not the focus of our lives anymore.
Her biggest news now is she turned TEN YEARS OLD yesterday! I told her that I remember being a 10 year old and now I HAVE a 10 year old girl and that seems crazy to me! She is a happy, dramatic, silly, funny, outgoing, intelligent, kind, irreverent spitfire and we enjoy her so much. Thank you for loving her and our family. Watch for the new site coming soon!
This is a fantastic story about Children’s Art featuring the lovely Emily. This young woman is even more beautiful and inspirational in real life than in the few moments you see her on camera. Also, see if you can catch a glimpse of Rachael!
Hey! Guess what I didn’t count on. Christmas was really busy and really exhausting! Fact about me: I’m usually pretty self-aware with one little exception. I consistently, and generally with great consequence, misjudge time in all its forms. I misjudge how long it will take to get ready. I misjudge how long it will last. I misjudge exactly how the weeks, the days, the hours and the minutes will flow. Me and time? Not really in synch.
True story. I am late a lot. So late, so often that when I served this great country as an Airman in the U.S. Air Force, I was actually Article 15′d (look it up, it sucks) and given a LOT of extra duty because of my inability to get to work on time. Now, once I was there, I wouldn’t leave. 15 hour days were nothing for me. So I found it stratospherically unfair that I should get punished just for showing at 8:15. Or 9:00. Or WHAT THE HELL even 10:00 in the morning when everyone knew well and good that I would be the last to leave! My commander did not see it my way. I’m always a little amused now when people see I’m a veteran and assume that I know how to show up on time.
But I do understand that this is a major vice and shortcoming and so I try to compensate by building in some accountability for myself. I say to my husband, “I will do this by 4:00 on Friday!” I say to my best friend, “I will be there 15 minutes early!” See, if I say I’m going to show up on time there is no pressure in that. No, no! No, I will be so good and show you this time by being early! I will post a specific date that I am going to do a giveaway on my blog so as to make sure I follow through!!
This friends, THIS is where the complete inability to see the truth comes face to face with reality. My little tricks, the little games I play with myself? They never work. And why don’t they work?
Because my Christmas was busier than your Christmas! Because it’s a conspiracy! Because I’m a loathsome failure! I have no idea. I wish I did. If I did, I’d change it. Because I’m self-aware like that.
I do have a winner of the Children’s Art Project 2012 Calendar with Rachael’s picture on the front though! Congratulations Lori! Please email me at firstname.lastname@example.org with your address so I can send it right off to you! Like the second I get it! I’m going to get off the computer and put in in an envelope this very second! Or when the post office opens. WHATEVER! You’ll get it by 2012!
I hope everyone had a Blessed Christmas! Despite the busy schedule leading up to it and showing up to my parents’ house 45 minutes late and the movie with friends 5 minutes late it was a wonderful celebration of a priceless and matchless gift that gives my family great hope.
From my family to yours, may 2012 bring you many blessings!
This is a hard post to write. Not because it’s sad or speaks of any difficulty. The opposite actually. It’s going to be a very brag-y post and smacks a little of “Christmas Newsletter”. “We’re doing great! Our kids are awesome! Bet we have more exciting news than you do!” Not really my style. It’s a big reason I’ve been in a three month writer’s slump. I find I’m inspired more to write when things are hard because I generally have more to say about those situations. Plus, when things are great I can get a little boring.
Case in point (rabbit trail alert), I have become the Chess Advisor for the kids’ school and I LOVE IT. Now, I could go on and on and on about the wonders of creating a custom logo for our team and getting the kids excited about tournaments and new ways to teach the kids during the hour I have all 50 of them to myself for an hour each week. I’ve already made my closest friends and some colleagues want to run from the room when I bring it up for the forty eleventh time this week so why would I also subject my blog readers to that? Because it’s a part of my life? Because it’s a good thing? Yeah. There is a reason happy people don’t write memoirs. So all that to say, the past several months have been very exciting and very good and I refuse to make this place the one where people are all, “Oh God. She’s bragging again.” Click.
But! I have to take this one post to brag. And I mean really, really BRAG!
As you recall, we left off with me fretting about whether I was a little to pageant mom-ish getting Rachael ready for her catalog shoot. We walked in the door and this is the first thing they said: “There’s our cover.”
This is what they call the “Preview Catalog”. She is holding her original painting here and let me tell you, it didn’t hurt sales! We were so excited and we knew the full length version was coming out and we also knew there were other children photographed so it was met with no small amount of excitement when we saw this a few weeks later:
I adore this picture of her! And those soft curls? JUST REMEMBER WHAT WE WENT THROUGH TO GET THEM! THEN! The THIRD catalog comes out!
If you click on this link HERE you can peruse the entire catalog! You’ll find a picture of Rachael and Marc together (Page 3) that was used in all three catalogs, her card (Page 25) and the collection of items from Children’s Art Project, including the 2012 Calendar (Page 53) with Rachael’s picture on the cover! Her art was not included inside the calendar but it’s her lovely little face that represents the kids of MD Anderson.
Also, in many stores across Texas and even a few other States, you can find this retail display!
I’ve had more than one person send me a picture of this display with something to the effect of, “HEY! I KNOW HER!!” Also, it’s like a fun treasure hunt when we go into stores we know support CAP, look for their display and then casually mention that THAT’S MY DAUGHTER!! A little surreal actually.
Last week Rachael had her three-month check-up. Everything is just fine with no worries and so when we left we stopped by the CAP headquarters. We got to meet the design team and even see the archive library where they keep all the original artwork. They encouraged Rachael to continue to make art and send it in and I am positive that she will contribute again but I told them that I don’t think anything will top this first year. It has been very special and such an honor. And as she gets older, she’s understanding more how lucky she is and how she can help other kids. When she drew her “Happy Angel” she was only five and in the midst of treatment. She forgets how hard that time was for her but I’ve asked her to reflect on it a little and realize that this… THIS is how she gives back. She makes art, she smiles for the camera. She acts as a representative for all those kids who are going through treatment. And the money generated through sales goes to college scholarships and camps and she’s a part of that!
You can be part of it too by ordering from the catalog or if you live in a state that supports CAP, look for a display and purchase products designed by Rachael or other kids.
Now for a little Christmas surprise! I would like to give one of you a 2012 Calendar from Children’s Art Project with Rachael on the cover! To enter, just leave a comment and on Christmas I will draw a name and send the winner a calendar!
(To catch up read Part 1 here and part 2 here. I can summarize for you though. Velcro curlers are evil and iCarly doesn’t make me think of Christmas. Actually, you might just want to go ahead and read parts 1 and 2.)
The next day I indignantly marched down to my local beauty supply store and was all, “What on Earth were you people thinking?!” But unfortunately I got a minimum wage earning emo 17 year old who really didn’t care. She was all, “Really? Wow. Weird.” Notice, no exclamation points. It was not “Wow!” It was, “Wow.” See the difference? Obviously I was not going to get the sympathy I so deserved for making my daughter cry.
This time around I decided (without emo girl’s help) to go with very soft looking curlers that had virtually no holding power Pressure was on because after putting them in her hair we packed up the car and headed to Houston. I told her not to move in the car and she is seven so of course she stayed perfectly still. If perfectly still means not sitting still even a little bit. Then she slept in them all night and I can say this for those curlers… they aren’t velcro. We stuck with the magic number 24 but by the morning they were just sorta dangling at the ends of her hair all pathetic like. BUT… they did the trick and when we brushed it out her hair looked lovely. We put her in the new outfit and we went to our little event.
Here is where I admit that I felt a bit silly and wondered if all the thought and work and forcing my kid to sleep in curlers two nights in a row was a bit too much. I watch Toddlers & Tiaras with as much superior judgmentalism as the next person (don’t lie) and as I was walking into the presentation room it was with a small measure of paranoia.
Many of you know the outcome of the story. The rest of you will have to wait.
Tomorrow! I promise!! Tomorrow!!
Also TOMORROW, make sure you check in because I’m doing a little Christmas giveaway. If you read this blog, I promise this is something you are going to want!
You can read Part 1 of this story here.
When we were mentally preparing for the start of interferon and daily injections, Bo, a fellow Little Warrior’s dad informed us that chocolate actually has some analgesic properties and can really help take a bit of the pain away during unpleasant procedures.
Extracting twenty-four torture devices wrapped securely around every strand of my daughter’s long, thick, curly hair qualified as an “unpleasant procedure”. Luckily, I had a hankering for chocolate chip cookies the night before and as she is screaming and I am hyperventilating I suddenly remembered that fact. “RACHAEL! Do you want a cookie?!!” She stops wailing and blinks at me. It is 7:15 in the morning and mama does not give cookies out before lunch. “Really?” she intones incredulously. “YES! I HAVE COOKIES! I’LL BE RIGHT BACK!!” Not only did the surprise of a cookie in the morning shock her tears away but they were so delicious that she couldn’t possibly cry while eating them. So, one by one, I slowly worked those demonic instruments of pain out of her hair. Anytime I pulled a little hard or one was particularly stubborn and she would squinch up her face and start to make a squeal I would say, “Have another bite!” She made it through two cookies. They were big cookies.
Now, I did manage to get a picture of this but Rachael is getting older now and apparently putting unflattering (albeit incredibly cute) pictures of her on the internet is somehow not appreciated. I promised her up and down that I would NOT show ANYONE that picture. And I intend to keep that promise because one day when she is a teenager I want her to believe me when I promise to not freak out when she tells me something awful like she really does like peas. BUT, I did manage to find a picture that is disarmingly close to the real thing…
It’s uncanny. Really.
But then I brushed it out and the most amazing thing happened. It looked absolutely stunning. She had the big, beautiful, well defined curls and it was just exactly the look I was hoping to achieve. Rachael looks at herself and says, “That was almost worth it!” No Rachael. No, there are not enough cookies in the world to make that even close to worth it you brave, insane child. Back to the drawing board.
To be continued….
During the month we stayed in Houston in 2009, one of the activities we did was Tuesday Art Class at MD Anderson. And by “we” I mean Rachael. I used it as an hour of free babysitting and ran off to do important stuff like eat chocolate.
I picked her up after one of these classes and the ladies were all excited to show me Rachael’s painting. It was quite good I thought and very true to her “style” at the time of giving girls blonde hair and elaborate dresses. To this one she added a halo on top and the little town of Bethlehem below. A Christmas Angel. In watercolor. The ladies asked me if they could keep her angel and I said sure.
Rachael was five.
About 8 months later I got a call from someone saying that her little angel made the first cut in the voting rounds for Children’s Art Project and would I give my permission to have it made into a sample card so it could go up for the final vote. Of course I said yes and I asked how many made the first cut. They said 50 pieces of art. And approximately 25 would be made into cards. So I asked if I would be able to vote and they said I could and I’m thinking, “Heh. I’ve got a blog. I’ve got a lot of Facebook friends. We’ll stack that vote!” I like to play fair.
I knew the voting would happen around January so I figured I’d get a call or a sky writer or some sort of indication that it was time for me to rally all my people to vote for my kid and when I heard nothing I thought, “Hmm. I bet they have a Facebook page and there might be information about it on there.” Sure enough, they totally have a page and when I went to it my heart sunk.
Voting had ended the week before.
Not one troop was rallied. Not a single person who is totally biased for my daughter spent a week “voting once per day” (as I had planned). I actually felt like throwing a little tantrum. How could I not be told! She wouldn’t stand a chance if I couldn’t secure her an advantage! I was so sad. I felt like I had failed her.
Then in March we got a letter.
“Dear Rachael, We are so excited to say Congratulations on being chosen as a designer for the 2011 Children’s Art Project Holiday Collection!”
WHAT?! FOR REAL!!??
We were all so excited for her! There was jumping up and down and squealing and calling Grandmas and just a tiny sense of shame that I thought she needed my help so much, overpowered by an incredible sense of pride that she was chosen by total strangers.
We were invited to a small ceremony honoring the Designers and of course we were going. A couple weeks before the event I received a call from one of the people in charge asking if we would mind having her photographed for the catalog. THIS JUST KEEPS GETTING MORE EXCITING!
Okay. So this is a big deal and I knew I needed to get her something nice to wear that wasn’t too trendy because I didn’t want her to be all, “WHAT did you put me in MOTHER?” when she is a teenager. Also, I needed something with sleeves because it’s a Holiday Catalog and nothing screams CHRISTMAS like a tank top. Problem was it was middle of Spring in South Texas where winter ended in 2004. I could not find anything that didn’t look like it came straight off the set of iCarly or the beach. Trendy and sleeveless. That was what every single store was selling. I was getting panicky.
After looking in a LOT of stores and starting to feel downright pageant mother-ish, I did finally manage to find something I thought was perfect and moved on to the hair. I consulted with several friends who have talent in this area and the general consensus was that whatever I try, I should do it beforehand to see if it works. So, to bring out her beautiful curls, I decided to try curlers that she would sleep in.
I desperately wish I had a picture of this but she refused to allow me to take any pictures of her “grandma” hair. Trust me when I say it was adorable and hilarious at the same time. I got these “velcro” curlers and when I asked the lady how they stay in the hair she tells me that you just roll them up and the hair holds them in. Okay, easy enough. I go home, wash her hair and put 24 of these little curlers in her hair, told her to not move an inch in her sleep and I love you baby, sleep well!
Then I went into the bathroom to pick up and decided to read the packaging these wonder curlers come in. It says, “For fine hair, do NOT roll more than once around the hair.” Heh heh. I’m sure they didn’t really mean that. Too late now!
In the morning they have not moved one millimeter. They are in EXACTLY the same place as I put them the night before. Huh. These things really hold.
You have no idea.
When I started trying to take the first one out I cannot explain how quickly I realized the perilous situation we were in. Not only were they firmly and tightly stuck in her hair, the fact that she was a CONSCIOUS and SENTIENT being was going to pose a problem. Those things hurt like a Mike Foxtrot coming out and I HAD PUT TWENTY FOUR OF THEM IN HER HEAD. I had not gotten one out and she is SCREAMING in pain. I’m crying and I really and truly believed I was going to have to cut them out of her hair and she would have to be hairless for the catalog. I was so upset I didn’t even think of the irony in that. Think of chewing a 24 pack of gum, rolling your kids hair around each chewed piece and then yanking it out one strand at a time. It was going to be like that.
To be continued….