Category: childhood cancer awareness

Tarantulas, Sharks, Monkeys, and….Relapse

#ReverbBroads2012 Prompt for Day 2: What gives you nightmares?

In general, I am not afraid of spiders. I don’t like them, but I am also not the type to stand on top of the toilet seat or dining room table while some man comes in to rescue me from a daddy long legs. I just wad up a bunch of TP and attack it. Then, flush it away and moving on. However, tarantulas are in an entirely different category. Just the thought of one gives me goosebumps and makes me feel nauseous (nauseated?). I lived in the desert in AZ for a year and the entire time I was there I was irrationally afraid that a tarantula would make its way into our house. I think most of this fear stems from that episode of The Brady Bunch, when they all go to Hawaii, and a tarantula ends up on Peter’s face. Anyone who grew up in the late 70s/early 80s knows exactly what I am talking about. Creepy! I think it’s the hair. On the tarantula, not Peter 😉

I grew up in NJ. Our vacation every summer was two weeks at “the shore.” (For those uninformed, this is the real Jersey Shore, not that trashy MTV show that ruined it for all of us Jerseyans and forever tainted the rest of the world.) I have also seen the movie Jaws. So, there you go. Pretty natural fear of sharks. Although I am an excellent swimmer, I never ventured too far out into the ocean. Why risk it? Interesting side note, my husband is obsessed with the Discovery Channel’s “Shark Week.” Stays up until 2 or 3am because he.cannot.turn.away. Then he has nightmares for a week and I get to hear all about them. And then I have nightmares.

I think monkeys are creepy. I love chimpanzees and find gorillas fascinating. But monkeys creep me out. I think it is the annoying oooohhhh-ahhhhhh sound they make. Ugh. Cannot stand it. You know that scene in Toy Story 3 when they tape up the monkey so they can escape from day care? Sets my teeth on edge. Blah! I have to cover my ears when we watch it.

I hesitate to write this next part. I am trying hard to have less cancer and more hope in my life. I am trying not to make every single post about our family’s journey with childhood cancer. But, me being the rule-follower that I am, I feel I must really answer the question.

What gives me nightmares?

That my son’s cancer will relapse and he will die.

Our older son is a cancer survivor. This is a miracle. He is a miracle. He is a fighter. He is a survivor. He was stage 4, with a very aggressive diagnosis (Rhabdomyosarcoma).

It is hard to release these words to the universe. As if somehow saying them out loud might make them true. Silly. Irrational. Even saying that makes me sound crazy. I know this. But once your life has been touched by cancer, everything takes on new meaning, both good and bad. And, you don’t go back to your old life or your old self, because neither of them exist. While my son is two years off treatment and has been cancer free since October 2009, the fear of relapse is an absolute terror that I keep at bay every day. It is a dark shadow that creeps into my room and my dreams at night. When I kiss him goodnight, my heart stops. I bury my face deep into his neck and I inhale. I am trying to memorize his smell. I rub my hand all over his head, which thankfully now has hair. I put my hand over his heart and try to match its rhythm to my own. I kiss his cheek, rub his back. And I thank God that I have been given another day with him.

At night, I have dreams of him running across fields of sunflowers, flying kites on the beach with his brother and grandpa, swimming in the ocean with my mom, going to college, getting married. I have nightmares that all of this will be stolen from us.

I am not sure what to say next. There is no Hollywood ending to this movie. There is no bow to wrap this package. It is my life. I choose to fully live it. Nightmares and all.

Letter to Congressman Mike Rogers, Michigan Eighth Congressional District

Hon. Mike Rogers

U.S. House of Representatives

133 Cannon House Office Building

Washington, DC 20515

February 2, 2012

Dear Representative Rogers,

Please allow me to introduce myself. My name is Monica Marcelis Fochtman and I am a constituent of yours in Michigan’s Eighth Congressional District. My husband and I and our two young children live in Okemos. I am writing to you today because I want to introduce you to my son, Luke. Luke is six years old. He is thriving in kindergarten- already reading at a first grade level. He loves to draw and play with Legos. He is a kind friend and generous older brother. He knows how to love and he expresses it freely. Luke is also a miracle. Luke is a cancer survivor.

On December 12, 2008 Luke was diagnosed with Stage Four Embryonal Rhabdomyosarcoma (ERMS) at just three years old. Luke’s original tumor was 7 cm long and there were also multiple metastases in each of his lungs. The world as we knew it stopped. At the time, my husband and I did not really understand that children could even get cancer. Quickly and without warning, we were thrust into a world that no child or parent should ever experience. Luke endured 70 weeks of chemotherapy treatments, six (6) weeks of radiation treatments (each one requiring that Luke be fully sedated so that he would lay still), and multiple infections and setbacks due to his compromised immune system.

Although some great advances have been made in the area of childhood cancer research, it is not enough. In the last two decades, there have only been two new chemotherapy drugs developed for use specifically in children. The chemotherapy agents that were used to treat Luke were developed over 20 years ago and they were developed for use in adults. At one point during Luke’s treatment, his immune system was so beat-down from the cumulative effect of all the chemotherapy, that his oncologists began adjusting his doses and only gave him 75% strength. My son deserved better than 20 year old drugs. All childhood cancer warriors deserve the best medicine that this country has to offer.

I know that you are currently considering language to be included in the reauthorization of the Pediatric Research Equity Act (PREA). On behalf of my son, Luke, the thousands of other children like him, and the thousands of children who did not make it, I am writing to ask that you vote yes for the language changes suggested by Dr. Peter Adamson, Chair of the Children’s Oncology Group (COG) and by your fellow Congressman, Michael T. McCaul. For your convenience, I have attached documents from both of them which outline the suggested changes.

I had the privilege of meeting both Dr. Adamson and Congressman McCaul while my family and I were in Washington, D.C. this past September for a St. Baldrick’s Foundation head-shaving event (www.stbaldricks.org). At Union Station on September 21, 45 other cancer mothers and I (46 Mommas Shave for the Brave, http://www.46mommas.com) shaved our heads as a sign of solidarity with our children and to raise money and awareness for the kids. We also participated in visits to the Hill and the Childhood Cancer Summit, organized by COG and the Congressional Childhood Cancer Caucus.

As a result of our cancer journey, I know that Luke is one of the lucky ones. For his particular diagnosis, the five year survival rate is approximately 35%. Luke survived. Too many children diagnosed with cancer do not. Cancer is the number one disease killer of children, claiming more children than AIDS, cystic fibrosis, asthma, and genetic anomalies combined.

All children deserve a chance. The only way this chance will be given to them is if more pediatric-specific research is done. The only way that will happen is if you and other members of Congress fight for our children. I hope you will consider my request. Thank you for your time and service to our state.

Best regards,

Monica Marcelis Fochtman, Ph.D.

This picture was taken in July 2009. Luke was 3.5 years old. He was recovering from a 104.8 degree fever. Notice that the chemotherapy caused him to lose his hair, eyebrows, and eyelashes.

Our miracle. This picture was taken on Luke’s first day of pre-school at St. Thomas Aquinas in East Lansing, MI. Fall 2010.

Grief changes all the rules

Thanks everyone for your words and for taking the time to read my blog and respond to my #11 and #12 things….(post from January 5)

As a person of faith, I actually believe that when people die, they do go to a better place and that their earthly suffering ends. Especially, the kid cancer warriors. They endure so much, for so long. I absolutely believe that they are in “a better place” after they die. I believe that the kiddos are finally free. Free from their suffering, free to run, and play, and jump and laugh. I believe that in Heaven, our children are beautiful and pure again. But, I would never say that to a grieving parent because that is what I believe, not necessarily what they believe or want to hear.

Some parents I know also believe as I do and it is okay to share these dreams and visions with them. I have done so with a few other Mommas and I have treasured those conversations and always will. It is important, though, to remember that others do not believe that their children are in a better place. This is their right as the grieving parent. The world of childhood cancer has taught me that comforting a friend is about them and what they need, not about what I need or believe. Being a friend is about doing and saying things to make my friend feel better. It’s not about me.

It is funny to me (not ha-ha funny, but ironic funny, I guess) that I am writing a post about believing one thing and saying another. I usually preach about “meaning what you say and saying what you mean.” This philosophy often gets me in trouble (see previous posts about my big mouth). However, I believe that grief changes everything and everyone and in those cases, the old adages about honesty no loner apply. Grief cuts away part of your soul and it never goes back completely. I know this. I must honor this in others as well.

The 11th and 12th things I will never do

11. I will never say to another momcologist, grieving parent, or friend, “Well, at least (insert name of loved one here) is no longer suffering. S/he is in a better place.” Again, these words are patronizing and insulting to the person hearing them. Not everyone believes in an afterlife where a person’s physical and spiritual selves are reunited and restored. Not everyone believes in God or Heaven. A statement like this assumes that the person you are speaking with believes what you believe and that they might find some comfort in these words. Maybe. But probably not. It is my experience that people who say such things do not know what else to say, or have no personal experience from which to speak.

12. I will never use this forum (or Facebook or Twitter) to complain about my children. It makes me sad when I see these posts (too often, if you ask me). If you have time to post on Facebook about your child’s behavior, then you have time to get off Facebook and address it. Children are a blessing to be cherished. Children are the greatest gift and legacy that we can leave on this world. I want my children to look back on my words and be proud and maybe even a little inspired (if I am lucky). All that I do and say should lift them up, not tear them down.

10 things I will (probably) never do

Happy New Year everyone! As I continue to slowly dip my toe in the water of blogging, I am cheating and using some prompts from other people. There is a website called http://reverbbroads.blogspot.com/ where they posted a list of writing prompts for every day in December. As you can tell, I am very behind! Actually, most of the prompts felt too much like homework. And since I am done with my PhD, homework is no longer part of my life! Whew! However, the prompt for December 6 was intriguing to me and I continued to come back to it as I thought about what to write for the New Year. So, here it is, my list of “10 things I would never do.”

1. Never say never. The world of childhood cancer taught me that the world of absolutes does not exist. And, I have already done things that I never thought I would: shaved my head, connected with other momcologists in deep and profound ways, started a blog….

2. Go skydiving. I am afraid of heights and if I ever had that kind of disposable income, I am not going to waste it jumping out of some plane praying that my chute will open.

3. Never buy another Volkswagen. EVER.

4. Spend five years with an unreliable car that I hate. Not worth the emotional and physical stress.

5. Take a job where I have to commute more than 30 minutes one way. From December 2010 to November 2011, I drove 126 miles each day to get to work. Great position (I was a Director), great people, great students. But, the toll it took on me, my health, my family, my car, and my wallet were very taxing. Still recovering.

6. I will never go another year without some sort of regular exercise routine. See number 5.

7. Go back to school for a degree. There is a reason the PhD is called “terminal.” Happy to be a student for fun, but for grades, no way!

8. I will never say to another momcologist, grieving parent, or friend, “I can’t imagine how you feel.” Or, “I don’t know how you do it.” These words, to me, are patronizing. They put distance between the person saying them and the person receiving them. It is as if the person saying them is really saying, “Thank God you are experiencing that and not me or my kid.” I didn’t choose to have a son with cancer. We were drafted. Our choice was to fight like hell and win.

9. I will never say to another momcologist, grieving parent, or friend, “God doesn’t give us more than we can handle.” BS. I am a person of deep faith. I believe in God. I believe that God died for me and for my sins. But, I do not and never will, believe that God causes children to suffer or that God gives us our sufferings to teach us a lesson. The universe is random (more on this in a future post) and bad things happen to good people. And, there are in fact many people out there who have “more than they can handle.” This is why we must pay it forward and help where we can.

10. I will never not have a big mouth and strong opinions. This is my curse. I say what I think. Sometimes, I do it in the wrong place at the wrong time. I am getting better at apologizing for those times. This is also my gift. I will spend the rest of my life using my big mouth and my strong opinions to fight and advocate for children with cancer, increasing awareness and raising money for pediatric-specific research. Awareness=funding=research=cures.

Diagnos-a-versary

Three years ago today, December 12, 2008, the foundation of my world crumbled and all that I thought I knew was stolen from us. At approximately 5pm, in a very sterile, standard-looking patient room at University of Michigan CS Mott Children’s hospital, two oncologists and one pediatric surgeon told us that our three-year old son had cancer. That it had already spread to his lungs; “multiple nodules in each one.” That it was “treatable.” I asked one of them (whom became our son’s lead doctor and whom we now like and respect) if my son would die. And he told me, “With cancer, that is always a risk.” They shoved paperwork in my face (I think it was agreeing to treatment and that they could take a sample of my son’s tumor. But, honestly, I am still not sure what I signed that day.) Somehow, we made it out to our car in the parking garage. I have no memory of that. The next thing I remember is holding my husband’s hand while he drove us home in the dark.

My sister-in-law works as a youth minister. She loves God and does His work every day. She has tremendous faith and a gift for living in reality as well. Just this morning, she sent me a message saying that she was thinking of us today. I told her how angry I am, how cranky I feel. She told me that just because we are angry and sad doesn’t mean we aren’t grateful, too. Whew! That is exactly how I feel. She also told me once that God wants our honesty, not our piety. Well, then, here it is. Here it is in all its gut-wrenching reality!

Today, I feel conflicted, disjointed, off-kilter. I am angry, almost blindly so. As I write this, I am literally shaking with rage. My son was diagnosed with stage four cancer. The chemotherapy that was used to treat him is 25 years old and was created for adults. The list of long-term/latent side-effects is endless and devastating.

But, I also feel humbled, grateful, and hopeful. My son is still here with us. Every day, I work to be worthy of that gift. To be the best mother I can, to advocate for more funding and research for the children, to learn something from all of this, and to pay it forward.

Hope

“Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.” ~ Emily Dickinson

The further out from treatment Luke gets, and the more clean scans he has, the better his chances are for long-term survival and no recurrence. If Rhabdo kids relapse, it usually happens within the first year off-treatment. Luke is already 21 months OT and has had clear scans since October of 2009. He eats and sleeps well. He is doing well in school. He makes friends easily. He is kind and funny and smart.

Yes, I have hope; this is ironic, given that I was never a person who tended toward optimism. I have always been a “glass half-empty, but I am going to work really hard to make it full” type person. I have tended towards sarcasm and melancholy as covers for my fears and inadequacies.

Yet, in spite of myself, I have hope. My son is still here with us.

But, my son also had stage four cancer. So while I have hope, I also have perspective. And that is the rub.

Perspective

I so desperately want to “move on.” To let my guard down, to exhale. To believe that my son has been healed forever, that the cancer will never come back, or that he won’t get a different cancer later in life. (The statistics are grim and the chances of secondary cancer-as result of the very treatment that saved his life- are just as high. See: http://www.curesearch.org/ArticleView2.aspx?id=9268&l=9240)

I could choose to believe this. I want to choose to believe this. Some days, I do. But, the truth is..the raw, naked, awful truth is that this is not our reality. And this is certainly not my reality today. Anyone who has experienced any kind of trauma or loss knows that your old life no longer exists. And this is what cancer steals from families like ours: the blissful ignorance of every day normal life. The belief that the world is right and true, that bad things only happy to bad people, that parents outlive their children, and that if you are a good person, love your family, work hard, etc., etc., that you will remain unscathed.

As I write this, wallowing in my self-indulgent rage, there is a family in Massachusetts, who is burying their five year old daughter today. She fought neuroblastoma for almost three years. http://www.patriotledger.com/features/x890738774/Funeral-Monday-for-Charlotte-Kelly-5-who-died-from-rare-form-of-cancer

She died on my son’s birthday. She is being buried today, the three year anniversary of my son’s diagnosis. I am thinking of Charlotte Rose and her family. How by now, the funeral Mass is over and they might be on their way to the cemetery. How her parents might be holding each other to keep from falling. How someone, perhaps a grandmother or trusted aunt is holding her brothers’ hands and walking slowly, slowly to the spot where they will bury their sister, forever. How they are bracing against the wind, trying not to let it take their breath away. How that priest might be struggling to say something profound, to say anything that might provide comfort. Knowing, really that nothing will because so much of this day is wrong. Very, very wrong.

There is another mother in Minnesota who today grieves for her daughter. December 12th is her daughter’s birthday and the anniversary of her death. And still, I know another mother in Miami who’s daughter turns nine today. She is fighting rhabdo (the same diagnosis as my son) for the third time.

So, what I am supposed to do? Which path will I choose- hope or perspective? Is it an either/or decision? Can I actively live into both of these choices? I could live every day in fear, waiting for the other shoe to drop. Some days, I do just that. I let myself fall down the rabbit hole into the darkness of pity, doubt, anger, and fear. Diagnos-a-versary  might be one of those days.

Even as I write these words, I am embarrassed by how petty they sound, how self-absorbed and silly. My son is still here with me. I get to kiss both my boys every night and every morning; and I do, every chance I get. I get to have breakfast and dinner with them. I get to inhale their smell and hold them whenever I choose. I know too many mothers (and fathers) who cannot say the same. I know too many mothers who would give anything and everything to have what I have.

People from all over the world prayed for my son and for our family while he was in treatment. Thank you. The time you devoted to this, and the faith with which you put those prayers before God are a gift to us. Please do not ever stop. And, if I may ask another thing of you. Please pray for me as well. Pray that I have the courage to choose hope. Pray that I am strong enough to get out of my own way. Pray that I can acknowledge my anger and my fear. That I can name them, look them in the eye, and choose to not let them win.

Right before our son began six weeks of daily radiation treatment, our radiation oncologist told me, “Your hopes and dreams for him are not gone. They are just different.” Truer words were never spoken. The hopes and dreams I have for myself are not gone either. They are just different.

(The term diagnos-a-versary is borrowed from another 46 Mommas momcologist I know and love.)

My old green sweater: remembrance & rebellion

While the rest of the world remembers and honors the 70th anniversary of Pearl Harbor, today I celebrate two different events. They are equally significant and, for me, are occasions to remember and reflect. Today is my son’s sixth birthday. Today I am wearing a green sweater.

My son is six. This is a blessing in and of itself.

My son is six. This is a blessing because he is a cancer survivor. He was diagnosed with stage 4 cancer on December 12, 2008, just five days after his third birthday.

I was wearing this green sweater when he was diagnosed.

The five year survival rate for my son’s diagnosis is 35%. So you see, I was given my son twice. The first time was on December 7th, 2005, in the early morning hours after a very long labor (48+ hours) and delivery (he was sunny-side up and wouldn’t drop). The second time was October 26, 2009, when we got the news that he was cancer-free. Thankfully, we continue to get good news. He is almost two-years off-treatment (OT) and thriving in kindergarten. He loves art, math, and music. He is an avid lego-builder. He is kind and sensitive. He knows how to love and expresses it freely.

Today, I am wearing this green sweater as remembrance. I am reminded of the cold, dark, and devastating day in 2008 when we learned that our just-turned-three-year-old-son had cancer. Today, I am reminded of that long drive back to Lansing from Ann Arbor to pick up our youngest son from day-care (at 7pm!). I still do not know how my husband was able to steer our car home, how we did not end up in a snowbank on the side of the highway and just stay there forever. Today, I am reminded of the absolute terror we experienced. The world as I knew it, and my role in it, were irrevocably changed. All while I was wearing this green sweater.

After my son was diagnosed, I wore this sweater a few more times. One of my all-time favorite pictures of me and my younger son was taken while wearing this sweater. But as we got further and further into the childhood cancer world (chemo, bacterial infections, radiation, scans), I just couldn’t wear it again. It held too many painful memories, too many reminders of that gut-wrenching day. I put it away in the bottom of a plastic bin and shoved it to the back of my closet.

Too many other cancer families do not get the good news that we got in 2009 and continue to receive. Too many other cancer mommas hold their children as they die. Too many other cancer mommas must wake-up and face another day without their babies (http://www.46mommas.com/). Cancer almost stole that from me, too. I do not know why my son survived and others do not. There is no reason. There is no lesson to be learned. But, my son is still here with me. And, because of that truth, I must choose to live into this new life. I must choose to learn a lesson from our experience.

Today, I choose to wear this green sweater as rebellion. I choose to wear this green sweater so that I can create new memories. Tonight, we will go out to dinner (Cracker Barrel is his choice) and I will wear this green sweater. I will smile and laugh and thank God for my blessings. I will take a picture of me and my sons, while I am wearing this green sweater.