The Anger of a Cancer Mom

Amber is mom to Julia, and she's angry. You can read more from Amber at Little Papi and Punpkin.

I'm angry at cancer right now.

We have been blessed with an obviously God-given peace in these months waiting for Julia's GI surgery. The intense anticipation and urgency we could not shake a few months ago, has been replaced. It was definitely not something we did. The situation has not changed. The need has not changed. The surgery has not changed. And the damage we are causing in the meantime has not changed. I have no other explanation than God.

Last week though it hit me again like a hammer. I was laying Julia down on the floor to begin another round of her laxative regimen. As she looked up at me, she said with tears in her eyes, "I don't want to have more surgery. Not even later. I promise not to cry anymore when we do these medicines, just please no surgery." My heart shattered again. I hate cancer and what it has done to my child's body and life. I hate that I have to talk her into being sedated for the 14th time like it's something normal.

I hate cancer because of the role it pushes moms to fill. In an instant we go from the loving, nurturing, protector to the mom that has to repeatedly lead our child to the fire and force them into the pain. Every cancer family has their own specifics whether it's port access, chemo drugs, sedation meds, sedated scans, bone marrow biopsies, home injections, spinal chemo, painful suppository laxatives and enemas, finger pricks, IVs, chest tubes, NG tubes, and the hellish list goes on.

We have to calmly deliver our child to the pain and push them into it... over and over and over again. Sometimes alone in the privacy of our homes, sometimes in suffocatingly small exam rooms, sometimes on display for all the world to see. Sometimes we are the ones inflicting the pain. Sometimes we are restraining them with all our might while trying to talk with calm, loving words. The irony of the whole scenario is probably most disturbing to the child. And other times we stand helpless in the corner while our hearts lay open on the table with our child. And it never gets easier.

Never.

It goes against everything our souls tell us as a mother. Yes, there are therapists to help and techniques to use, but it doesn't stop the pain. The screaming, begging, pleading, tears, and anguish still happen. Knowledge and coping cannot erase that. The dart in the battle are still thrown and pierce a mother's heart in the deepest places. The therapy removes the darts and puts on a bandaid, but the holes remain.

Julia dreads her daily laxatives and suppositories because of the hour of pain she know will follow each round. And now she has a raging diaper rash that is making the process excruciating. We are using an array of creams, blocks, anti-yeast drugs, etc. and things improve only to flare up at the next diaper change. It is just the last straw seeing her in such pain. The scream is just anguish. Even basic water on her skin is too much.

It just makes me so angry.

And to add insult to injury, you have to pay for all of this suffering. We received the statements from Julia's week-long January hospitalization- the week of torture. We paid 5 figures for that event. The next time I see that many numbers in a row it better be a family vacation to someplace tropical! It is crazy that a 4 year old should meet their deductible in the first 6 weeks of the new year and that the maxed out FSA funds will be gone by spring. But that is the world of cancer and we hate it.

I am angry at the relapses. For all the families we love right now who have been dealt the only blow worse than the initial diagnosis. "Your child has relapsed." And for some the confusion continues. The world of medicine is far from black and white, as much as it strives to be. The world of pediatric cancer is often the grayest of them all. Cancer cells play by their own rules. How many times should you subject your child to labs, spinal taps, CT scans, bone marrow aspiration, lung biopsies, and chest tubes only to be told there is no real answer or protocol? Even the most high tech scans do not give definitive answers, just guesses, so you go in for a biopsy, but the pathology is unclear. The doctors are not sure what they are seeing or it shows some evidence there may, possibly be cancer, but hopefully not. "Would you like to go home and wait and see or sign up for 6 more months of poison and torture?" Are these really options? Sadly, this is the reality for so many.

I am so angry at cancer right now.

The Advocate

Your kid has cancer.

Your resume now includes oncologist, radiologist, and pharmacist in addition to chef, chauffeur, and maid. Well, I've got one more to add to your CV:

ADVOCATE.

Unfortunately, we're the only ones who are going to be the advocates our children need. It might not be something you would have chosen, but it's something that has now chosen you.

March 16-17 marks Children’s Cancer Awareness and Advocacy Day. March 16th is a day full of training so you know just how to attack. March 17th, you are let loose on Congress to demand funding for the research to fight the disease that kills more children than any other disease combined.

Eve and I went last year and we plan to return to hold those accountable for failing to do the right thing. Are you coming?

All the cool kids are doing it.

Pen Pals

Dear Friend,

Thank you for contacting me regarding pediatric cancer research and awareness. I greatly appreciate hearing your thoughts on this important issue.

I agree that the fight against pediatric cancer is critically important, which is why I have long been a strong supporter of cancer research and prevention efforts. In 2010, I asked the Senate Appropriations Committee to allocate $35 billion in funding for the National Institutes of Health (NIH) for fiscal year 2011. Estimates show that the NIH will spend $6 billion on cancer research projects in 2011.

During my time in the North Carolina Senate, I helped allocate much-needed funding to University of North Carolina cancer research and treatment facilities, particularly the University Cancer Research Fund. Additionally, I have also supported expanding the National Cancer Institute, which is the premier cancer research agency in the United States. With adequate funding, this federal agency can work effectively to conduct crucial prevention, detection, diagnosis, and treatment research.

Cancer is the leading cause of death by disease among U.S. children between infancy and age 15. It is estimated that nearly 11,000 new cases of pediatric cancer are diagnosed each year. Fortunately, the risk of developing certain forms of cancer can be reduced with screening and lifestyle and behavioral changes. In addition, cancer treatments have progressively improved over the years and medical innovation continues advancing toward a cure.

Again, thank you for contacting my office. It is truly an honor to represent North Carolina in the United States Senate, and I hope you will not hesitate to contact me in the future should you have any further questions or concerns.

Sincerely,

Kay R. Hagan

Dear Senator Hagan,

"Thank you for contacting me regarding pediatric cancer research and awareness." I contacted you about pediatric cancer research and awareness on September 15, 2010. 152 days ago.

"In 2010, I asked the Senate Appropriations Committee to allocate $35 billion in funding for the National Institutes of Health (NIH) for fiscal year 2011. Estimates show that the NIH will spend $6 billion on cancer research projects in 2011." That's wonderful. Except only 3% of that might go to pediatric research. To be divided among ALL childhood cancers.

"Additionally, I have also supported expanding the National Cancer Institute, which is the premier cancer research agency in the United States. With adequate funding, this federal agency can work effectively to conduct crucial prevention, detection, diagnosis, and treatment research." With adequate funding. Funding is not adequate for childhood cancer. I don't have to tell you, Senator, that there is a HUGE difference between authorization and allocation.

"Cancer is the leading cause of death by disease among U.S. children between infancy and age 15...Fortunately, the risk of developing certain forms of cancer can be reduced with screening and lifestyle and behavioral changes." Please share with us what part of our children's lifestyle and behavior we can change so as to reduce their risk of cancer. Is it the smoking? The booze? The tanning beds?

"...Cancer treatments have progressively improved over the years and medical innovation continues advancing toward a cure." Not there yet. Not even close. Not until it is funded. Not just authorized, but allocated.

Sincerely,

Christy Griffith

Mom to Eve, who was diagnosed at age 2 with childhood cancer and is looking to find out what she could have done to prevent it.

Tell Senator Hagan your thoughts on the subject here.

The Bestest of Anniversaries

Annie Bares Thomas is celebrating a milestone that we wish all parents could celebrate.

Tonight we celebrated Isabelle's 10 year anniversary of being off treatment. After tucking her in to bed, I went out onto the back patio and had a good, long cry. Earlier tonight, after a celebratory dinner, we looked through the scrapbook I made of Isabelle's year in the hospital. It was filled with beautiful, smiling faces of children who brought us so much joy during the dreary days while inpatient. Flipping through the pages, I realized that most of the other children pictured are no longer alive. I cried once again for Lacey, for James, for Irene and for Silvia. For sweet little Marcus. I cried for their mothers, and our sisterhood, of holding each other up during our darkest hours. I cried the most for the children who I could picture, but failed to find names to match their faces. I wanted so badly to remember their names. I cried for the agony I can only imagine these children's parents must feel every minute of every day.

And, I cried out of joy and gratitude. I have this incredible, funny, brilliant young woman who I am honored to call my daughter. I rarely think about cancer most days, but tonight, it consumes me. I can taste the hospital air, smell the crappy food, and hear beeps and buzzers in my mind. Ten years later, and I can still bring myself right there.

So, although I am an obvious mess tonight, Isabelle is doing fantastic. She seamlessly settled into her new middle school and is making tons of friends. She's excited to go on to state for the science fair, and continues to practice and try her best on the flute. She still hates to exercise, but we've started playing kickball on Sundays with a group of friends and she's finally getting into it. My husband is so proud, as Isabelle is gobbling up the classics from his childhood, reading "Dune", "A Hitchhiker's Guide to the Galaxy" and “The Fellowship of the Ring”. They have their secret "geek" club that I am not a part of, and I love it! They watch Star Trek together, and discuss computer issues that I lack the knowledge or desire to understand. Life is so incredibly good right now that I almost feel guilty. Instead, I try to just enjoy our moment of peace and happiness, for surely there will be challenges around the corner.

Ten years! I never would have thought we'd get here.

-Annie Bares Thomas

It's a Small World

You might feel like you're alone once your kid is diagnosed. But trust me, it could get weird how small the world gets. Like, six degrees of Kevin Bacon weird.

Take me, for instance. Eve is home from the hospital for a week after being diagnosed with Wilms before I get a call from a friend saying that she heard about an old co-worker whose daughter was undergoing treatment for Wilms. I reconnect with said co-worker (Red Dye #48's Gina) and we wax poetic about cancer, cookies, and YouTube.

A few months after Eve is diagnosed, one of my best friends calls to tell me her next door neighbor's son, who will be in Eve's preschool class of eight, has just been diagnosed with bilateral Wilms. So, 400-500 kids get Wilms each year in the US, and of those, 5% are bilateral. And two of those twenty kids are in the same class and our families already know each other.

Someone contacted me and gave me the email address of Red Dye #48's Melissa early after Eve's diagnosis. We talked for months before my friend (the one with the next door neighbor whose son is in Eve's class) told me she was talking to a local business owner about selling them ad space in a local magazine. I heard the business owner's name a lot and kept seeing it on Facebook, but it wasn't until I looked at Facebook's fun and informative mutual friend feature did I realize that she was a childhood friend of Melissa's.

A neighbor of mine gave me the email address of a friend of her's whose daughter finished treatment for Wilms the year before. The mom also happens to be the teacher of another friend's son at my daughter's school.

This past Friday, we were in clinic hearing the good news that Eve's latest scans were clean. I ran into someone that looked awfully familiar, but it took me a second to figure out who it was. I then realized it was a mom that I had connected with on a message board and had since friended on Facebook. We already had plans to meet and have dinner this week, but now that we met in real life, neither of us needs to wear a red rose.

(I would never in my wildest dreams meet someone in real life who I have "met" online, but the rules are different if you've got stock in Zofran, Clorox, and Emla.)

So all I'm sayin' is, the world is a lot smaller than you'd think. Unless you're in China.

The Accidental Philanthropist.

try to follow along, I will skip from present to past and back again, but only because I want to end this post with the do-gooder.

Today, a 6 year old little girl passed away while waiting for her Bone Marrow transplant. I don't know this girl's name or background, family or fight that she has had, I just know that she had Leukemia and her donor match had been found. The donor had his procedure this past Tuesday and sometime on Wednesday, before she could receive the stem cell transplant, complications arose and she passed away.

On New Years Eve 2011, I was the last member in this house up. Before shutting down the computer, I thought about writing my resolution on facebook; "I will make the world a better place". Task interrupted. Instead, I spotted new mail on a thread from Joe. He and I had started corresponding earlier that day, for the first time in two years. Which, I had only met this Joe two years ago, through an ebay transaction. Yes, he purchased a jackhammer, we shipped it across the country. Positive feedback was left, end of story.

6 months after this ebay transaction, Gwyn was dx, admitted, had surgery and discharged in 5 days. We didn't even have time to google abdomen mass. I emailed family and friends updates on Gwyn while we were held up at UNC. I was unaware Joe was receiving updates of the cancer adventure.

fast forward to NYE 2011...I received the first email from Joe, "Hello, I am looking for the person that sold me a jackhammer 2 years ago, is this you?". Ummmkay, maybe he wants to find out if we have some other tool specific to his remodeling needs...I write back, we start communication and in the email that came through as the 2011 ball dropped was as follows:

"After my purchase from you your email updates about your daughters treatment started coming in. I was hoping her treatments were successful and I'm glad to hear that they have been. Thoughts of her condition have been on my mind since then because I too have children and 3 years ago we lost my wifes mother to lung cancer. Two summers ago while I was donating blood at the local blood mobile my wife's mom and your daughters condition crossed through my thoughts again. I decided it was time to sign up for the National Bone Marrow Program. 6 weeks ago I was contacted and asked if I was willing to help a 6 year old girl that has Leukemia. I was informed that I, along with 15-16 other possible donors, was an initial match for her blood type (AB+). 4 weeks ago I gave blood for the DNA process. Last week I was confirmed as the closest DNA match for her. Last Wednesday I got my prep, xrays and physical at a cancer center in Berkeley,CA. The little girl is now being scheduled for her radiation treatment and my stem cell extraction procedure is scheduled for January 25th. It's very emotional for me at times but without question or doubt I am sure this is what I want to do for her. Thank you for enlightening me about this subject. I hope and pray my contribution will help her past this condition so that she can live a normal life. Everything happens for a reason and this reason is good for all. Thank you for guiding me towards this program, Joe"

I walk because I look good in cross-trainers.

There are lots of reasons to walk.

(I ate too much Taco Bell.)
(I have an unnatural need to exercise.)
(I walk because I'll have an asthma attack if I run.)

I want you to find the closest CureSearch Walk near you and...run, don't walk, to sign up.

Walk in person. Walk virtually. Walk however you need to walk to let the world know how awesome you are for supporting children's cancer research. Don't hold your breath waiting for someone else to raise money, because that shade of blue just ain't good on anyone.

Just a friendly reminder from your neighborhood power walker.