Monday, September 19, 2011
I'm aware kids get cancer.
I'm aware those kids get poisoned or radiated, or both.
I'm aware some of those kids die, every day.
I'm aware that moms and dads are out their right now, about to find out their child has cancer.
I'm aware that today a mom will hold a basin as the chemotherapy makes her child sick, again.
I'm aware that tonight a father will visit the grave of his child, another causality in the war against cancer.
I'm aware a child can go from an ache in their leg to bone cancer with one scan.
I'm aware that a boy will miss the homecoming dance this month to undergo immediate major surgery to remove a tumor he didn't know was there.
I'm aware that before this month of awareness is over a girl will have to become aware of her own mortality, and then die before her dreams have time to come true.
I'm aware that no one wants to think about what it would be like to hear "your child has cancer."
I'm aware that no one wants to watch as the nurses wear protective clothing to keep them safe from the liquid they'll be infusing into your child's bloodstream.
I'm aware that no one wants to hold their child as they take their last breath on this earth.
I'm aware that we need better diagnostics.
I'm aware that we need better treatment standards.
I'm aware that we need new tools to fight for the ones that have no hope.
I'm aware we need support for families on that worst day of their life.
I'm aware we need meals and mentors for those in the trenches.
I'm aware we need to never forget those whom we've lost and the parents that will long to hold their child again.
What will you do now that you are aware?
Do you have time you could volunteer to a non-profit group or event, or spend with a family?
Do you have a talent you could contribute to help raise awareness or funds, or help a child smile today?
Do you have money you could contribute to a fundraiser or a family in your region?
Awareness isn't enough. We need Action.
Saturday, August 13, 2011
When my kid was on treatment, these were the things I brought to the clinic/hospital:
Sanitizer we are germ haters, what can I say.
"Bear" because Bear soothed the beast.
Bottles, diapers & wipes because what goes in, must come out.
Change of clothes again, what goes in must come out. The adults had a change of clothes as well.
Stroller but only in the beginning because it was easier to handle the child and transfusion pole while walking became a milestone.
Confections because baking kept me sane and sugar kept the staff taking care of my kid happy.
We were fortunate to have moved into a newly built Cancer Center half way though Gwyn's treatment. The old building was built in 1950, so you can imagine the width of the halls, ceiling height and what lied beneath the insane umpteen layers of paint. The new building had everything from an interactive play mat in the waiting room, a computer room across the play room and both rooms had floor to ceiling glass walls, a bench with cubbies underneath filled with tiny little "poke prizes" of which I loved to see the handmade ones, and my favorite..a soda found in the kitchen complete with Coke and a pellet ice machine. Our needs were simple in the beginning because we were dealing with a 12 month old and the new building had everything needed to keep this kid occupied for the treatment days.
I lived a life of duplicates. Because it made my life easier. Because I loathe to pack the same things over and over. Because if he only saw it once a week it was still new and exciting the next week.
Josh was 1.5-2.5 yrs old his first go at cancer. These items never got unpacked, they stayed in the car:
Stroller because in there I can make him go where I want and he can zone out when he is over the associating with humanity. I kept a blanket in the bottom of it so I could throw it over the whole front of the stroller if he was trying to sleep. He is a finger sucker and as he was trying to conk out was the only time he would fight the mask. I'd use the blanket till he was out if we needed to go to a different wing of the hospital, then slide the mask on after he was asleep. Paper mask, thick blanket, not totally the same thing, but it did prevent people walking out of the ER from sneezing on him.
"Hospital" Diaper Bag (i wasn't kidding I duplicated everything possible) complete with an array of sanitizers, masks, emla cream, tegaderms, spare medical supplies (a roll of cloth medical tape can be 20 minutes of entertainment, and saline flushes are parties just waiting to be opened), extra clothes x2, diapers and normal kid things.
Change for the snack machine, must have chewy sweetarts. nom nom
Parking Garage token x3 I had one of those buggers everywhere, just in case, and we had scored a garage pass from social services (ask for one). Still I never wanted to be that lady at the exit with a screaming kid and a pass that had decided not to work trying to figure out how to get everyone to back up so I could go back in to get a token, it's just unpleasant. I also gave away a token more than once, because everyone forgets their wallet to come to the hemonc clinic at least once, and it's nice when someone takes pity on you and throws you a token so you can leave.
Snacks laced with cinnamon or unnatural cheese flavor, because that is what the boy ate on chemo.
A spare bottle of whole milk nuked to scalding and wrapped up in a bottle cozy to keep it warm. It's easier to cool a bottle than warm it in a clinic. And that child still will not drink milk cold, he's 4.5 now, he quit cold turkey because I won't heat it anymore.
A Drink For Me you get thirsty too
Daddy's work laptop because free wifi can solve many problems, and daddy arriving halfway through an appt with it, was the awesome
The Distraction Bag it was a free backpack given to us by a local charity with a few age appropriate toys inside. Our therapist recommended we fill it and save it for just the hospital. I did and it was awesome. He actually looked forward to going to the clinic just so he could play with a mini dump truck that talked.
Paper doesn't matter what kind or size, make sure you have some and a crayon or pen or something. it will get used.
Robeez I bought the fake ones from target, Josh uncooperative, was a kicker, and nurses appreciate a kick to the face from a leather slip on more than a hard shoe. I also didn't have to take them on and off for height and weight, which was one less thing to mess with while wrangling a slippery toddler. I had ones in the hospital diaper bag that I slipped on before I got him out of the car, they were just for the hospital and its special germs.
Camera I always had one, I would take pictures of every appt, to remember for him, to remember for me. I was able to figure out how many blood transfusions he has had because I always took a picture of the bag when he got one. If nothing else we could take silly faces photos and entertain him for awhile. My camera was my companion, it was there at every visit, every chemo, it made sure nothing was forgotten, that everything he went through was remembered, good and bad. I treasure those pictures of some of our team members that have moved on to different departments or hospitals. Pictures ended up being one of the ways I was able to reconstruct his journey so he could get all of his beads for the Beads of Courage/Bravery Beads program, after the fact.
We also took his security blanket and sometimes his favorite stuffed animal. We tried to keep it all to fit under the stroller. Our clinic has lots of television and a play area. For his first tour of duty he was easily entertained, and our visits weren't usually too long that we couldn't make do, or that he might take a nap.
Josh relapsed. His treatment became heavily in-patient. I purchased a super bag with wheels and a hard case base for fragile/electronic things that has a duffel bag top for our clothes and blankets and things. It was my admission bag. It was always 2/3 packed. I just changed the clothes in it, it had its own toothbrushes and toiletries so I didn't have to repacked it over and over for our every third week admissions.
Hospital Toy Bag a larger version of the distraction bag from the first round, it was a hand made tote we received that had fire trucks on it. I kept an entire bag of toys that were just for admissions (I hid it in a closet when we got home), his grandma gave him a new Cars matchbox car every time he was admitted, he only played with them in-patient, it was a brilliant plan. He wanted to get admitted for chemo, new car and access to his trove of cars! Score!
Hard Sided DVD Case always take your own DVDs, and if you can get a little case so you can pack 20 of them in a small space, it's worth it. We also used a dvd burner in conjunction with our dvr to load up a couple discs of his favorite shows so that we could watch them anytime of day. Pack DVDs that automatically start over again, we played them at night, it was the only way he would sleep through nighttime vitals checks.
Produce at our hospital fresh produce he liked was restricted, Josh was 2.5-3.5 so he was banned from many of them for choking hazard reasons, or they came in small cups that met his random produce binge appetite disapproval. I brought my own produce, a loaf of bread and a cookie cutter to make toast (toast from room service was always soggy, and that angered him), and some bottled smoothies for myself. We usually took over a crisper drawer of the patient refrigerator. I labelled the cloth grocery bag with our last name and packed everything else in ziplocs with our last name. Never apologize or feel weird about bringing in your own food, getting your kid to eat is important.
Snack Bag I brought another cloth grocery bag of non-perishable snacks for him, whatever was his favorite at the time and some things I only busted out at the hospital when he felt the worst and needed more inspiration to eat. I won't lie, there was a lot of candy in there too. I also packed chocolates and energy/breakfast bars for myself to eat if I couldn't get a volunteer to watch him while I got something.
Mini Laptop we bought this with fundraiser money, he loved computers, still does. It was a netbook and it was just his size, pbskids and nickjr and the thomas website would make those etoposide hours he had to sit in bed with a pressure cuff on the whole time, fly by. It was Josh's prized possession and lived in the bed with him. We are grateful to our family and friends who made this luxury possible, it was such a gift and became a hospital necessity for him.
Fancy Toiletries for Me people gave me these, little samples, and pampering kits, things I never use, but totally used in the hospital because it made a cruddy day better.
Nail Clippers hospitals don't have them, you'll want them.
Benadryl for you. you too can sleep through nighttime vitals. Get a system for them, then get a system that works for you too, everyone needs sleep. You may not approve of this, but it is what worked for me, and benadryl is gentle enough to be overcome by any surge of adrenaline I might get from real alarms going off for vitals that were wonky.
A journal/logbook to keep track of what day it is. . .
"Hospital" Pillowcases we got these donated from ConKerr Cancer, but you could use your own. Josh liked having his own special pillowcases, and now off treatment he still asks for them on his bed on occasion. When we got admitted, we moved in, it was his room, not a sterile hospital. It helped tremendously.
Fleece Blankets they dry the fastest in the unit clothes dryer when something unsavory has occurred. I brought two, and tried to keep them in different parts of the bed so one stayed clean.
Window Crayons better than window markers. Nothing says "this is our room and we are making the best of it" than writing bad pediatric cancer jokes on your door windows. Share with your neighbors.
Photos I also brought family photos, and pictures of Josh. I had 8x10s made at costco, slipped them in 8.5x11 page protectors and put them up on our door. The new nurses loved to see him with hair and when daddy came by they already knew his face. Other moms loved it too, they'd walk by and then tell me thank you, it helped them remember there is life outside of the unit. Josh always asked for one particular family photo to be mounted somewhere at the end of his bed so he could always see it, it helped him not miss his sister (she usually couldn't visit due to an age restriction during RSV/flu season).
Slip on Washable Shoes I got fake $5 uggs from the drug store bin. They were easy to kick off to get in bed with him, or when I slept on the foldamacouchamatron. I could hop right in them when required and they were washable when I got deposited on by any unwanted fluids. Besides they completed the "I'm living here" look when I shuffled down to the cafeteria or food court in my pajamas and deluxe clip on/long term parent badge.
I had necessary items that I brought in through admitting and the rest I would retrieve from my car when a volunteer walked by or a therapy came to visit. Take no shame in moving in if you are going to be there a week, just have a system so you aren't the crazy lady with all the stuff falling out everywhere down the hallway.
My number 1 best addition to cancer round 2, and the thing I still get the most questions about when we visit is my COLLAPSIBLE WAGON. We get at least 10 inquiries every hospital visit. It never fails me, it is always in the car, and it can always hold what you need it to. Both my kids can sit in it, they are 100+ lbs together. Cancer boy can sit in it or lay in it if sedated or unwell. Unlike a stroller, he can play in it and the toys don't fall on the floor. During ER visits, it was his bubble, he was not allowed out of the cart, he was not allowed to touch anything outside of the wagon. It was his world, and he didn't mind. I also used it to lug in things for admissions and appts, and it could collapse in a corner or in the bathtub or a closet. I got mine at Costco, they are stocking them right now, but you can also get them through other retailers for slightly more. My only complaint about it is that you have to make sure little fingers stay off the front edge, you can use the handle to stop the cart for a quick brake, and squish fingers. That and if you are longlegged you can actually walk too fast and make steering a little unruly, but I'm used to it now. I loved that if we were in a hurry I could get behind it, bend down a little and push it from behind. I actually ran like this once to make a consult on the other side of the hospital. Bald boy yelled "excuse us BEEEEEEEP!" the whole way. We even took ours on our recent roadtrip, we always take it, and it is always useful. I actually bought a second one, it's still in its box, just in case anything happens to this one, I love it that much.
Always take your camera or use your camera phone, you'll never regret it.
Wednesday, July 13, 2011
Thursday, June 23, 2011
I recently listened to a fellow cancer mom speak from a day that shook her earth. Hearing a doctor speak the word cancer while referring to her child was a moment in time that will forever etched in her heart. Her words wreaked many familiarities, making those little suck bells chime.
It made me think about this cancer mom snob I met.
Most of us cancer moms can relate as we read blogs from afar or have an instant bond upon personal introduction or the swapping of our child's dx, treatment protocol or spittin' some oncology game in the clinic. You know, like throwing up your gangsta sign and nod to show respect.
And I say most moms, because some moms have put themselves above other moms somehow, and cannot feel connected to the others that haven't been as far as they. So they say. I say I don't get it. Each day, my heart aches when I think of the families that will start their journey with a new dx and the ones that will forever walk without their child. I think about that everyday. Every. Day. Some days I hate that I know the devastation of what childhood cancer brings, other days I hate myself for not knowing earlier in my life. But never do I put myself before someone that knows what chemo smells like on their child's head.
Wednesday, June 15, 2011
Sunday, June 5, 2011
Tuesday, May 31, 2011
Once. I knew I wanted to raise money for childhood cancer research and make others aware of how many people cancer effects. Young and old Survivors, caregivers abound. But Then I started poking around and found out that Relay; American Cancer Society gives our bald children 3 pennies to split between ALL PEDIATRIC CANCERS!!! So I looked further into other "areas" for us to push efforts towards.
So, why would you Relay?
We can raise some serious dollars in the name of our children by CureSearching. Yes, CureSearch uses 97 cents of every dollar raised for research and education for our hairless babes. WOW. Overcompensating for something? Naw, it's what should happen in the case of the ever rising cases of pediatric cancer each year. You know, the #1 cause of death by disease in children. And if we don't fund the Children's Oncology Group, who will?
Don't ask the government. I mean you can, CureSearch does with many parents beside them in DC every year, but they are all tied up at the moment, spending money on deciding which program to cut next.
Ask your friends, family and your fb world. Ask your church, schools and the strangers that come to your yard sales...put up signs, create a collection jar at your home events or parties...I'm sure that jar will be full at the end of the night, just like bellies of your guests that are eating your delicious food and being entertained free of charge.
If you are into playing a good game of kickity-kickball, CureSearch has that to offer too. If you have children in school, approach your child's teacher with this. Good for school going kids of all ages. Yes, you hipster college young adult, working hard to bring it back old school, you can tell your parents "it's for a good cause" and mean it.
For the outdoor enthusiasts, there is even a full day hiking event. Two of us Red Dye Moms are going to raise money for an Ultimate Hike over the next few months, for an October event. Yes, we're taking bets on who can make it further. There is the "baby hike", which is half of the 28.3 mile Ultimate Hike. I will probably have to hang up my flops and find something to support my ankles, but this girl could use a great reason to buy a new pair of boots. I understand the day prior and the day after is a bit of a food party. I'm in, in innedy-in. And if you want to place a bet on your horse, we'll post a link in the near future for the two mamas putting on their hiking boots and packing their granola for the bald babes.
Monday, May 16, 2011
Wednesday, May 4, 2011
Dumbledore shares with us the difference in perspective between mother and child on scan day.
Little Warrior, age 5, is very excited about tomorrow. She has tried on several outfits, discarding those with metal snaps or metallic glitter, trying to find just the perfect one for her outing. “I need to have a snack before I go to bed,” she reminds me. She’s giddy. She can’t wait. Tomorrow, she gets to go on “the donut ride.”
Looking through my eyes: tomorrow, we will get up at the insane hour of 5 am and drive down to the hospital where we have spent a significant amount of time and money over the last 5 years. Tomorrow, Little Warrior will be NPO – no food or drink. Tomorrow, Little Warrior has scans, and an echocardiogram. Tomorrow, she’ll have a needle jammed in her arm, and will have to drink 3 cups of contrast. Tomorrow is the first time she’s gone a whole 6 months between scans. Tomorrow, our lives could completely change. Again.
Looking through her eyes: tomorrow, we’ll get up early and drive to where she’s had a lot of fun, and see people she really likes, like Dr. M. She’ll get to drink 3 cups of Sprite, and watch tv, and then she gets to go on the “donut ride,” that slides back and forth. She’ll get lots of praise, and stickers, and probably even a little toy, because she’s so good at doing things like being still and holding her breath. And when they put the iv in, she’ll get to show them how she doesn’t even flinch! Doesn’t even say “ow!” And then we’ll go get a real donut, and chocolate milk. And then she gets to lie in the dark and watch the Disney channel while someone slides something across her chest. And THEN, we get to go to the cancer clinic, and sometimes there’s art people there! Or musicians! And all the nurses will talk about how much she’s grown. And she’ll get to see Dr. M, who will want to know about how’s she’s been. She’s so excited, she’s planning on sleeping in her shoes.
Cancer Parents, this is for you. We have so much to worry about. But you maybe can mark “crush her spirit,” or “make him fearful,” or “traumatize them,” off your list. This is their journey. And hopefully, they look at it with different eyes than we do.
We are happy to report that Little Warrior is still NED!
Friday, April 29, 2011
I just have to share this with a group that would understand the angst I feel. There is a current courtcase that issued a verdict of guilty to a mom who withdrew meds for her son with autism who was also fighting non-Hodgkin’s lymphoma. He was given an 85% chance of recovery and had obtained remission before she withdrew drugs. It relapsed and her son died. I feel the same way reading this article that I did the first time I took Josh to his first burn clinic evaluation. Josh was severely burnt at 15 months, and it was his treatment therapy that allowed us to discover his tumor, before it metastisized. (Talk about a mixed blessing.)
Anyway, after severe burn and skingrafting, you are given very strict orders when released from the hospital, including not going out in sunlight as the tender skin will burn quickly and seriously. At our first visit, we bumped into a boy who was in the next room...whose screams at night brought me to tears. His mother ignored the instructions, let him go to a Memorial Weekend picnic - all day - and the burn that resulted was actually worse than his original one.
This mother with the son with lymphoma was given an 85% chance of life for her son, something I would have dreamed for my son. Instead we were told "numbers don't always hold meaning when we are talking about kids. Even if he only had a 1% chance at survival, we will assume he is that 1% unless his body tells us otherwise." It was a gift from God to have that attitude, but what that didn't say was that my son actually only had a 15% chance to survive.
To also be given the term remission seems like a second Godsend. I remember how odd I felt given the term no evidence of disease. Yes, it was a great victory to be told we can't see anything. But it is an odd sense of relief mixed with worry about what if they can't see it? Remission always felt like such a stronger term...I always envied people who got that stronger statement of success.
For myself in the end, I think the emotion I feel is just such a strong sense of sadness for this child. Regardless of the side effects, regardless of the difficulty, I resigned myself immediately to the idea that I didn't get the luxury to worry about side effects, discomfort, etcetera. Lack of treatment equaled death. My son had to be alive to experience his side effects.
I remember the two hours I cried when we learned of his moderate to severe hearing loss. My wonderful audiologist allowed me to stay in her office saying "you can stay here for awhile and grieve his hearing loss before you re-enter the world of a mother of a cancer patient fighting for his life."
And afterwards, when the accutane caused issues with his sight and I was saying My son can't be hard of hearing and blind if he survives to the doctor who oversaw the therapy. The worries were severe. But even then I never considered stopping treatment; this was the only proven therepy at the time for neuroblastoma. In the end, despite being the side effect kid he proved to be, the sight returned, and our doctors decided on a great course of action that was awesome for us.
I guess in the end, I credit my ability to stay in very close touch with my specialists, and communicate all of my worries. We found the best options possible, and accepted the rough road we had. I realize that my responses are only one of many, and not all parents are as lucky. I respect all responses, because this world of cancer is a god-forsaken place for anyone. It is hell on earth. But it makes me so sad for these kids when the chances are in their favor to survive and thrive, and other choices are taken. It makes me cry for these special angels. In the end I hear myself whispering to this mother If you only could realize how lucky you were, you wouldn't have been so careless. It's not fair to say I know, just honest. And I cry for myself, for
having been in a position to make such a statement. And grateful to have my son asleep, curled up with our dog. I must give him an extra hug when he awakes.
-Mary Beth Collins
My perspective on this is a little different.
My healthy child was diagnosed with NHL at 4 years old...I was quoted similar 'rosy' survival rates straight off the protocol. But our oncologist never bothered to delve into the prognosticators specific to my child - like skin and medastinal involvement and LDH>800 (Tommy's was 1600+ at Dx). If he had, the odds of curing my child with that protocol would have been much, MUCH lower. This was something I discovered when we were blind-sided by a relapse 9 months into the 1-year protocol.
What I wonder is how could severely, non-verbal autism and PDD have played into the 85% cure rate?
And I remember cajoling, begging, bargaining, pleading, and waking my child up in the middle of the night to give chemo... It was very hard at times- and my child was very reasonable. I wonder what it would have been like if he had been developmentally delayed and perhaps fought me every step of the way?
They said she completed the first 4 phases of treatment, but she failed on the 5th maintenance- sometime in the 2nd year. What happens in maintenance? The visits reduce to once every 3 weeks for the 'big' chemo by IV and you go home with mountains of very expensive oral meds that you have to organize and schedule like a nurse. Not an easy task, especially for someone without medical training.
For me, it was a little over a year into chemo when I finally realized that the goal of the multiple years of chemo was to walk the fine line between killing the cancer and killing the child. When it dawned on me that they WANTED his counts to be continuously low, I started joking with the nurses when we would go to the hospital for chemo "Hey, he's feeling great, his counts are good, it must be time to hit him again!" It was the sadistic truth of what we were doing to my child.
Maybe this woman heard "remission" and thought everything would be fine. She said he "looked better" when he wasnt on the meds. Well, of course he did! Maybe the steroids made his autism worse, do we know? Maybe the mother didn't understand that the purpose of the prolonged and repeated torture by chemo was to keep the beast at bay? And how the heck did the doctors go by that long without noticing that the child's counts were probably higher than they should have been???
Or maybe she just had to decide between dinner for her family vs. $20/pill for Zofran.
I think the media has presented a sensationalized version of the facts and I have more questions than answers. Before you applaud the judge for throwing the book at her you might want to consider what this verdict does to YOUR rights as a parent.
And before you throw her into a nuclear reactor you might want to walk a mile in her shoes.
What would YOU do? Feel free to email us at email@example.com and let us know your thoughts.
Thursday, April 7, 2011
Our family seemed to be in the minority because Zach had survived his battle with cancer. Good thing I had packed my tissues, because after listening to several speakers talk about their kids who had passed and why they were doing what they do now, it was tough to hear. Then I thought about what a wuss I was sitting there crying when I still had my kid 3 doors down playing with the 1 or 2 other small survivors that had come to DC. It was time for me to suck it up and pay attention to the detailed statistics the speakers were telling us.
Stats such as pediatric cancer research being considered a "discretionary program". Say what? Since when did finding a cure for cancer become optional? Maybe if their kids had cancer they would see it differently - but that isn't something I'd wish on my worst enemy(if I had one).
We move on to our first Senator meeting with Richard Burr's office. This meeting was so weird. It didn't really seem to have a 'start'. The aid we met with, Jennifer Nardi, met us and just sort of looked at me to begin...and I choked. Had no idea where to start. Where was that lady in our group who said she'd start and end for us in the meetings? She was late, that's where she was. I managed to get through a jumbled start and thankfully another set of parents picked up the message for me and we were able to get all our points on the table. I got the impression Jennifer Nardi was not interested in our group or our message. However, we made her sit there and listen anyway. The other family in the pic is Christy Griffith, Eve and husband Matt. Eve had a different cancer and was treated with the same chemo drugs as Zach, as was a older survivor of leukemia (29 years survived!)...see the need for more research yet?
Then we were off to a good lunch of chicken strips, fries and cheese pizza. Those were some good chicken strips - worth all that walking back and forth all day! We went to Congressman G.K.Butterfield next and met with his aid, Meredith Morgan. She was full of energy and I felt like we really had her attention in this meeting. She took notes and even asked questions we were able to answer. Made me feel a bit smarter up on the Hill.
I passed the information on to Tonya, our chief of staff, regarding what we discussed and she is going to review it tonight. Also, I read your children’s stories and I am so sorry. I can only imagine how difficult that is to go through for everyone involved.
After this meeting, we had some time to kill so we took our time getting to Senator Kay Hagan's office. I took some random pictures during this walk...
What's the 1st thing you notice in this picture??? We were lucky enough to be stopped twice that day for the President coming and going down the street...whoever this guy stops wouldn't be what I call lucky.
I really took notice of all these damn stairs around Capitol Hill...maybe it was because I had a kid in a stroller to lug around all day...what do handicapped people do here? I finally found a ramp at one building at guess what...it lead me to the base of some steps.
This certainly explains a lot about people in Washington...
Zach's new friend and partner in crime, Eve.
The kids were wild by 5pm. This poor girl looks like she was ready to make a break for it when we left! At the end of the day I think we really made an impact on Capitol Hill - for better or worse, we made one. I ask that each and every one of you write to your representatives and ask them to maintain the budget for the rest of this year and to increase it for next year. We need the research. Simple as that. I'll update about responses I receive as they (hopefully) come in. Thanks for your support and encouragement. We need it!
Monday, April 4, 2011
With St. Baldrick's season in full-swing, it's important to know where your hair donations are going. Dumbledore has just the facts, ma'am.
Why I Don't Support Locks of Love
Buck up, Dumbledore. Tell 'em how you feel.
I love the idea of donating your hair to a charity. It's something so meaningful -- you're donating a part of yourself! And we girls, well, we've been raised on this notion. It's Della in Gift of the Magi and Jo in Little Women. It's putting someone else before your own vanity. It's lovely.
My problem with Locks of Love is that I think most people who donate are doing it under false assumptions:
a) Their hair will be used to make a wig
b) Their hair will be used to make a wig for a child with cancer
c) Their hair will be used to make a wig for a child with cancer, donating it to them for free
a) Chances are good that your hair is either sold to a wigmaker or thrown away. (I read somewhere, but sorry, can't remember the source, that most American hair isn't good for wigs because we wash it all the time, use hairdryers, etc.)
b) The primary purpose of Locks of Love is children with alopecia. They donate their wigs to children with permanent hairloss, not the temporary loss caused by chemotherapy.
c) Not necessarily. For many, they are sold on a sliding-fee basis. One sends in an application, tax returns, medical diagnosis and two letters of recommendation.
Unlike some, I don't consider Locks of Love to be a scam. If you donated, you did a good thing. Children with alopecia deserve something that will make them feel more normal. (Although, maybe it's the Universalist in me, but I have an issue with requiring two letters of recommendation just for something to feel like you're a normal kid. But that's me.)
My problem is that there is a wide chasm between what people think Locks of Love does and the reality. Verisimilitude! This is one case where you can "blame the media" who don't even do the most basic investigation -- I mean, most of this information is on Locks of Love's own website. But the media continue to promote misinformation, such as in this article:
"...he and several members of their Unitarian congregation decided to grow their hair for Locks of Love. The nonprofit organization provides wigs for children who lose their hair during chemotherapy."So, if you have long hair and you specifically want to help kids with cancer, what to do? Well, I have some answers.
1) Donate it to Wigs for Kids.
2) To donate it for an adult going through chemo, donate to Pantene's Beautiful Lengths.
3) Best yet: Sell it and donate the proceeds to CureSearch.
Thursday, March 24, 2011
Dumbledore is back and she's scratching her heads with the rest of us about the new General Hospital storyline.
In amongst a very busy week, I have also been watching a soap opera. A soap opera I’ve never watched before – why the heck would I do that?
You guessed it. Wilms tumor.
Despite being the second most common type of childhood cancer, Wilms is considered rare. Most people have never heard of it. I certainly hadn’t. It’s a shibboleth. If you know the word Wilms, either your kid had it…or you’re a pediatric oncologist.
So, most of us learn to say “kidney cancer” when we’re talking to “civilians” in the war of childhood cancer.
Well, on General Hospital this week, they actually used the word. I heard the buzz, so I checked it out.
Which is worse – no information about Wilms out in the world, or wrong information?
Hey, it’s a soap opera. I don’t expect to see 6-24 months of treatment, or the moment when you realize that the reason your child looks so … different … is because they’ve lost their eyelashes. I don’t expect to see the mom making a 2000 calorie milkshake in a pathetic attempt to add some weight to their kid.
Even the most dramatic – and completely unrealistic/wrong/stupid part of the story arc – didn’t faze me. Another child is mortally hit by a car, so his kidney goes to the Wilms child. Presto! Instant cure for cancer!
You know, even that flight of fancy didn’t bug me too much. Because having nothing to do with this show, when your child is diagnosed with Wilms, if you’re lucky to have a lot of love in your life, you’ll probably have at least one person offer up a kidney. And you’ll thank them, and explain that the doctors don’t treat Wilms that way, but you’ll both go away with a warm feeling.
No, the part that bugged me was when the mom began railing that she had to get a donor kidney, because otherwise, (escalating anxiety), they were going to start her daughter on chemo that night!
One dose of chemo! OH NO!!!
See, the other stuff, I don’t think it will actually affect anyone. Yeah, parents whose children were diagnosed with Wilms this week might have Aunt Edna calling up to offer her kidney, but no biggie there.
But deciding to let your child receive chemo is hard enough. They’re gonna lose their hair, feel sick, get skinny. But it’s worth it. Because most of the time, it will save their life.
We called chemo “liquid diamonds.” I loved chemo. Every drop was getting my kid closer to being healthy again.
And it’s not just for getting rid of the cancer you know about. Here’s irony: when my daughter got the harshest chemo, she might not have had a cancer cell in her. See, she had a recurrence, picked up on a routine scan. They went in for the biopsy, took out all the cancer they saw (very small), and sent it off to the lab. It came back: Wilms.
Perhaps it was all gone. But the chance was also there that cells had spilled during surgery (one of the “spots” was like a liquid filled blister). Or that there might be other microscopic cells somewhere else.
So, we embarked on chemo. That wasn’t a risk we were willing to “wait and see” about.
It was a difficult decision. Having the idea in my head that chemo is the worst possible thing for your child, that you would be panicky, shrieking, at the idea of your child getting one dose, wouldn’t have helped.
We don’t know what the future will bring. But today…my kid is alive.
What are your thoughts? Unlike General Hospital, we could probably extend this into a multi-post arc.
Thursday, March 17, 2011
Wednesday, March 16, 2011
Mom - "Why did this happen to you? I just don't understand."
Me - "I'm not sure, but I haven't even thought about the reason yet. Maybe her resected tumor will be a link in research to the cure. Maybe her brother will grow up hating cancer or seeing children sick, and become a great scientist or wonderful oncologist. Maybe I will meet another cancer parent and create something to help millions and go down in history. I'm not sure why, but I feel it's not about me."
Sure, you can beat yourself up over what you did to cause this cancer in your child, but let's face some facts. The causes of childhood cancers are largely unknown. There are some genetic abnormalities or syndromes and radiation exposures that make up a very small percentage of known causes. Possible risk factors are suspected, but scientist have yet to identify specific environmental factors because of the variables associated with lifestyles and coordinates and such. We need more research. Awareness, research and money.
Through funding, be it on a government or private level, compassionate people gather, money is raised, families are involved and ideas are hatched. And these little ideas to create a foundation to raise money for research or grant wishes for children diagnosed with a life threatening disease or even give families a place to call home while their child is being treated at the local hospital become the world around us.
Heroes. They are everywhere, wearing street clothes and loving the world. They make the world a better place. They fill my heart with love and peace and I understand what compels them to do these great things. I get it. I would do anything to ease another's journey.
This post was inspired by Kim Hill, and the birth of the Ronald McDonald Houses. This is not the first or only league of amazing humans, nor will this be the last time we talk about inspiring folks that walk, ride, bake or raise the benevolence bar, but it was sparked by Kim Hill's recent passing.
In her death, we are reminded again, that the childhood cancer douchelord must be overthrown.
Reading an article about Kim Hill's death, I came across a statement Kim made in 1982 that sums up my sentiments:
"I didn't enjoy being sick, but if I wasn't sick, all of this might not have happened."
Maybe you are looking for your "why" behind your journey. Maybe you'll find it, maybe you won't. Remind yourself to take it one day at a time. Hug the people you love. Just get busy living. Raise awareness. Collect money for the cure. Volunteer. Love more. Use the force and change the world.