We’ll beat this too.

Hello, is this Catherine?

Yes.

Hi Catherine this is S from Dr. C’s office. (sigh) Are you at home?

That bad huh?

Is anyone home with you?

Not now, but there can be soon.

That will be a good idea. I have your pathology report. I am so sorry, it is breast cancer.

 

I have breast cancer. Stage 2,  grade 3,  invasive ductal carcinoma.

I am having a hard time forming complete sentences from my thoughts and feelings, please bear with me. This post might be a bit of a mess. I’ll start with the fact I am not going to die from this. The cancer I have is very treatable and, fortunately, caught fairly early.

As soon as I heard “cancer”, I knew this was not going to beat me. Becoming a parent changes you. It changes how you value your own life.

My first thought was my husband. This man is a rock. He absorbs punch after punch and continues to carry his family and care for them with selfless tenderness. I have never met a tougher more confident person in my life. My first thought went to him: “I can not leave Dan to do this alone.” We are a team.

My second thought: “My girls need me.” Period, nothing more needs to be said.

My third thought: “I can beat this and still hold my new baby.” Exactly 3 weeks before this phone call we were celebrating the heartbeat of the new edition to our family. At the time of the phone call I was 10 weeks into my pregnancy.

We just endured an exhausting 10 days of doctor’s appointments, medical procedures and heartbreaking information.

  • Wed: Breast needle biopsy
  • Thu: Pathology results. Cancer.
  • Fri, Sat, Sun, Mon: Process and inform loved ones.
  • Tue: Surgery (morning) and Oncology (afternoon) appointments
  • Wed: Perinatology consult, geneticist and ultrasound… unfortunate order because fetus has no heartbeat.
  • Thu: Process and inform loved ones.
  • Fri: D&C.

We were heartbroken over the loss of this pregnancy. It had been a light in the storm, something to guide us in the midst of cancer treatments. However, there was also a strange sense of relief at this loss. The heavy worry of saving my life and not harming my little bun in the oven was lifted off my shoulders. Dan and I were handling this stab to our hearts like we always do, together and with our eyes set on the future. We drove to the hospital for the D&C and I was scared. Not of the procedure itself, but of how I would feel after it was done. What will this do to me?

I woke up in recovery and all I felt was peace, closure and contentment. I was happy with my life and the two beautiful girls we have. I was ready to move forward and kick cancer’s ass. I suspect there will always be a little pain from this loss and I am at peace with that.

What’s the plan now? That is a two step process:

  1. Epic spa getaway with my childhood best friend. More like sisters than friends.
  2. Gloves on, hands up and knock the hell out of cancer.

The good far outweighs the bad in my life. My husband, oh Dan, I don’t even know what to say. My partner, my strength, my laughter, my love…you are my everything. (thank you for my new Kate Spade handbag and spa getaway!). This PM convo sums it up:

Do you know that you win father and husband of the year, every freaking year?!

#islay

I couldn’t do this fight without you.

I got you.

Always.

We have a long list of family and friends waiting for a word, any word, that would indicate we need help. Warriors waiting and ready 24/7. My wonderful parents drove down with only a days notice. I have two beautiful little packages of joy and hope, Natalie and Cara.

We’ll need love, understanding, patience, laughter and wine drinking buddies during this fight. What we don’t need is sympathy. There is a fight ahead but we are a happy and fortunate family. We aren’t new to medical battles and we’ll beat this too.

 

FullSizeRender (2)

 

Advertisements

Diagnosis

Leaving baggage claim and still high on our magical Disney vacation, I look at my phone and notice I have email. At the top, is an email from Dr. K, “DNA results update”.

We have a diagnosis.

After over four years of testing, waiting, testing, waiting and more testing and more waiting, we have a diagnosis. A year ago samples of DNA from Cara, Dan and myself were sent to Utah for full genome sequencing. A mutation was found in the “PDHA1 gene that encodes one of the proteins in the pyruvate dehydrogenase complex.  In other words she has pyruvate dehydrogenase (PDH) deficiency.”  We knew from previous tests, how she presented and her response to the ketogenic diet that there was an issue with pyruvate metabolism. Thanks to Dr. K, Cara has already been on the treatment plan, the ketogenic diet, and has been responding as we hoped. The other piece of news we received is that neither Dan nor I are carriers of this gene. This was just really poor luck for sweet Cara.

Pyruvate Dehydrogenase Complex Deficiency (PDCD) falls under the umbrella of Mitochondrial Disease. Walking at The Energy For Life Walk in Seattle on October 4th just took on a new meaning.

We received the news 2 days ago. I knew I wanted to write something but I have been, and still am, at a loss for words. Yes, it is nice to finally have an answer and to know that neither Dan nor I carry the gene and that Natalie is in the clear. At the same time, there is a deep pain in my heart for Cara. The pain is not new, it’s been there since the beginning. Most of the time the pain is in the background but it came rushing to the forefront this day. I am in a place that is hard to articulate – not happy, not sad, not angry just a “Yup, this is where we are.” I guess it isn’t that I am not feeling any one of those particular emotions, but rather, all of them at once.

 

 

Hey Cara, You Are 5!

My dearest sweet Cara,

5! You are 5 baby girl! Two days ago you had your first very own birthday party. We had so many friends from all parts of your life come to our house to celebrate you. The theme was The Wizard of Oz. You know that song you love so much, “Over the Rainbow”? That song came from the movie The Wizard of Oz! Everyone came because we are all so proud of you and we love you. Do you know what happens when someone welcomes you into their heart? You bring sunshine and a beautiful rainbow into their life. We all came together and celebrated the last 5 years. Celebrated getting through the scary parts, the ouchie parts, celebrated the happy parts, all the words you can say, all the things you can do, how you can scoot around the floor, how you pull things down from the windowsill, how you like to bother Natalie, your love of books, the messes you make, the faces you make (oh the faces!), the tickles, your laugh, all the joy and most of all your love for paper! We celebrated all of it because it is all a part of your journey and a part of you. Everyone came to celebrate our journey with you. image3

There has been a few scary times. I am sure you have seen mommy cry, daddy cry and worried faces. I bet you have seen a lot more smiles though. I know sometimes there are needles and scary machines, but I bet there has been more times with giggles and toys. I know therapy can sometimes be hard, but I bet there has been a lot more fun! I know doctors like to move you around, touch you and their hands are cold! You know what else they like to do? Talk to you, smile at you and give high 5’s! I bet they would even like to give “knuckles”. Yes, there has been scary days and sad days, but many many more happy days. You makes us all so happy and are such a big helper through the tough parts.

Happy birthday my sweet treat! Here is my birthday wish for you: I wish for you to stay silly and keep using your voice! There might be more sad, scary and ouchie times and I can’t wish those away, but I can wish that there are many many more laughs, smiles and tickles. Silliness is always fun and funny! Tickles are pretty silly. We are a pretty silly family huh?

You have a beautiful voice. I love hearing it. “Voice” can also mean letting people know what you think and how you are feeling. It can be crying, it can be shaking your head no, even a big smile can be a voice. You are really good at letting everyone know if you like or don’t like something. Sometimes you say “yes!” and sometimes it is just a big huge smile. Sometimes you shake your head and sometimes you look scared and start to whine. Sometimes your therapists ask you to push buttons on your talker to let us know what you want to do or how you are feeling. All of this is your voice. It is really important to have a strong voice and you have one. Keep using it even if it feels like sometimes we don’t listen. We are listening, even if you say “no” and something still needs to happen. I promise you, we are listening and we want you to keep telling us.

image1 (1)

I have another birthday wish: I wish that you will always feel like we are proud of you, just the way you are. However you get around, whether it be with wheels, a walker, on your feet, crawling or someone carrying you, we are proud of you. However you talk, whether it is through your stink face, talker, crying, or words, we are proud of your voice. We are proud of how you eat and taste, whether it is through your tubie, with a spoon, your fingers, big bites or little bites, we are proud of how you eat. We are proud of you! I don’t ever want you to feel like we are sad or disappointed because you don’t do something or do something differently. We are so proud of you and we know how hard you work! You make us very very proud.

So, CareBear I love you. I know I say that all the time and it is because there is just so much love that I just need to tell you. I love you.

Happy Birthday big girl! You are 5!

With all our hearts and lots of tickles,

Mommy and Daddy

image1

I feel Lucky

While at physical therapy with Cara on Friday, I saw a little boy, with the use of a walker, take his first steps. He must have been around 3 to 4. His mother had her hands over her mouth and her tears flowed silently. For a few moments, I sat Cara on my lap and together we watched the boy slowly move his walker forward. He made sounds that didn’t resemble words, his hands grasped the walker in an awkward way and his steps were slow. It was a beautiful sight. His face and voice filled the entire space with joy. I squeezed Cara and let myself fill with hope. On our way out, I couldn’t help but put my hand on the mother’s shoulder but a large lump in my throat prevented words and all I could manage was a smile. She patted my hand and nodded in understanding and appreciation. My tears broke through the moment I shut my car door. There is a powerful connection between parents of special needs children that transcends all differences and divisions. I don’t know this boy or this family, but I was so proud of him. She has never met me, but she knew what I wanted to say. I know that this mother and I see a beauty that many are oblivious of. We are some of the lucky ones.

The world is full of “retard” jokes, people laugh at those they feel are lesser than and many selfishly navigate the world with little to no awareness of people around them. When I witness this, initially I am angry, but at the end of the day I feel lucky to have had my eyes opened and heart softened. I feel lucky that I see beauty in a special needs/differently-abled child or adult. I feel lucky that I feel hope and pride when I see a special needs child take his first steps. I feel lucky that I see the awkwardness of those steps as more beautiful than the grace of a ballerina. More powerful than an Olympic sprinter.

A couple of weeks ago I took Natalie with me to Cara’s appointment with her neurologist. Sitting in front of us in the waiting room was an older girl with special needs. She wore a bib to catch her drool, her hands curled closed, she kept turning around gesturing at Cara and saying, “baby! baby! baby!” in that stereotypical voice we all made fun of (and some still do). When the girl left the waiting room to go to her appointment, Natalie looked up at me and said “mommy, that girl was really nice.” My eyes filled with tears of pride, I just hugged her and said “yes, she was a really nice girl.” I feel lucky that my eldest daughter saw this girl as just nice and nothing else.

Being a parent of a special needs child is very hard. It is a lifelong roller coaster of constant highs and lows. I have never felt so sad, happy, hurt, angry, hopeful and hopeless as I have in the past 2 years. Most nights I go to bed exhausted. I can’t remember who I was before I had Cara and my world is not the same place. But, I am lucky. I am lucky to be the mother of a special needs child. I am lucky because there is beauty in this world that only someone who loves a special needs child can see. We, as parents of special needs children, are lucky because our children have made this world a special place for us.

Why not?

On April 13, my family and friends will walk in Golden Gate Park for hope, for energy and for life. We are walking to raise funds for research for mitochondrial disease. Walking to raise awareness. Walking for more effective treatments. Walking for a cure.

It has been months since my last entry. I would like to wrap up 2012 and write our thoughts for 2013 and that entry will come soon. Right now, it is more important for me to reach out for support and donations for our upcoming walk. It has been hard for me to come up with what to write. I don’t like asking for anything and I like asking for money even less. When I start to think about it, I realize that I gain nothing from your donation. Nothing, yet, everything. I, personally, do not need a cure for mitochondrial disease. Yet, I feel like there is nothing in the world I need more. A cure means my daughter’s life. This is why I am asking without reservation and with pride. This is why I am asking you now, please donate. Why not?

Cara is doing wonderful on the ketogenic diet. Over the last 8 months she has not only regained skills she started to lose, but can babble, roll, sit with less support and is interested in exploring the world around her. For those that knew Cara before we started the diet, you know how amazing this is. There was a time where I wasn’t sure if I would ever be able to hold her on my hip and now she can sit in a toy car by herself. She still needs basic head and trunk support but she is gaining strength and control over her body very quickly. The diet has completely turned things around. As long as Cara has mito she will need to continue the diet for the rest of her life. The neurologist that is keeping tabs on her progress and maintenance while on the diet looked me in the face and with a clear voice said “This is not a cure.”

Cara, despite the neurological damage that has caused her current difficulties, is a healthy and happy 2-year-old girl. This diet is not a cure. There is still a chance that Cara will have a rapid decline in health. All it takes is one bad illness, a high fever, pneumonia, an infection or the diet is suddenly not enough. One bad illness that throws her out of ketosis, her acid level rises to levels that are difficult to control, her seizures are not manageable and her body is not able to create the energy it needs to continue. One bad illness or infection could easily mean I lose my daughter. There is no other treatment options. There is no cure.

The vast majority of children that show symptoms of mitochondrial disease at a young age to do not live past their teenage years. Many do not live to see their teenage years. The abnormal MRI that started us down this road was at 4 months. Cara is one of the lucky ones. We have the keto diet that has made a huge difference and hope and pray it continues to, but, it is not a cure.

We are happy to help Cara overcome all difficulties she will have in life due to the damage that has already been done because of this disease. We are happy to be her legs if she needs them, be her voice if she needs it, fight for her, help her live life to the fullest. We are happy to do everything we can but we can’t cure her. We can buy equipment, drive to therapy, meet with doctors, be vigilant to prevent her from getting sick. We can’t cure her.

I have a feeling that there would be more and higher donations if Cara were “sick”. That is too late. There needs to be more awareness and funding for more treatments and a cure before the fight for life. We need to enter the fight with more to fight with, or better, not ever get to that point.

I have read too many stories of those suffering from this disease that lived years, even decades, feeling full of energy and healthy only to suddenly find themselves in a wheelchair, tube fed and their bodies quickly shutting down all in a matter of months. I have read too many stories of children that seem healthy then after the flu, pneumonia or an infection take a trip to the hospital and never leave. Too many stories of too many lives lost.

This is not so much of a rare disease as it is an unknown disease. Every 30 minutes a child is born that will be diagnosed with mitochondrial disease before the age of 10. Half of those with mitochondrial disease are children who showed symptoms before the age of 5 and 80% of these children will not live to the age of 20.

The organs effected most by mitochondrial disease are the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Mitochondria are responsible for 90% of the energy our body needs to sustain life. Mitochondrial dysfunction has been linked to autism, Alzheimer’s Dementia, Parkinson’s disease, Huntington Disease, Amyotrophic Lateral Sclerosis (ALS), deafness and blindness, diabetes, obesity, cardiovascular disease, stroke, multiple sclerosis, Sjogrens syndrome, lupus, rheumatoid arthritis and even cancer.

My daughter has a disease that is progressive, fatal, very limited in treatment options and without a cure. I don’t know what else to say to encourage you to donate. If you haven’t donated already please ask yourself: Why not? Any amount helps.

If you are in the San Francisco area, we would love for you to join our team and walk with us. If you are not in our area, you can join our team as a virtual walker and help us collect donations and spread awareness.

Please support the Carawatts as we walk for awareness. Walk for treatments. Walk for a cure. Walk for hope, energy and life.

http://www.energyforlifewalk.org/sanfrancisco/carawatts

“R” word

I have been thinking a lot about the word “retard”. It’s a word that I used all the time to insult, make-fun and when joking around. It’s a word that rolled off my tongue with little effort and little thought. This is the problem, I didn’t think. It took having a special needs child to realize how much damage I caused to the world and to myself by saying retard. I made myself and the world around me less sensitive, less caring, less loving and less accepting. It is shameful that it took Cara for me to realize this. Shameful that we are comfortable making fun of special needs children and the differently-abled. Shameful that we, as a society, are not only comfortable with this but we laugh.

Think of what a retarded person looks like. Picture this person in your mind. Helmet? Involuntary movements? Drool? Speak with a slow muffled voice? Maybe they walk funny? Maybe they laugh funny? Remember how you would imitate a retard as a kid? These images you laugh at are real children. These images you laugh at are children that face challenges that would likely break you. These children conquer these challenges and continue to love life. They don’t judge you for making fun of them.

There are children that struggle to walk and coordinate their movements because the damage in their brain causes abnormal muscle tone. These children fight through hours of therapy a week. You should see them, they look totally retarded.

There are thousands of children and adults on feeding tubes because they aren’t able to or it is dangerous to eat like we do. What a retarded way to eat.

There is a little girl who brought tears to her parents eyes because she said “ma ma” years after the rest of us did. You should hear her though, she sounds so retarded.

There is a boy who is bound to a wheel chair, the simplest things make him laugh and he will need someone to care for him for the rest of his life. He is such a retard.

There is a disease where children have seizure after seizure and the only way to stop them is a medically induced coma. Many of these children die due to these unrelenting seizures. What a retarded way to die.

There are children that will go to school and be called names, have items thrown at them, laughed at and ridiculed not only by the children that attend the school but by parents. Oh my god, they are so retarded.

The way retards talk. The way retards move. The way retards look. The way retards live. It is all so funny isn’t it? The struggles they face and ugliness people throw at them is just hilarious. I mean, look at how they die? Look at how people have to care for them? Look at how much joy in life they have despite how we all make fun of them?

We all pray that our babies wont be born like them. We all pray that our lives wont be plagued with this burden. So, why not make a joke of it? Why not just throw around an offensive term because we don’t mean harm?

Just because we don’t mean it to be hurtful doesn’t mean it doesn’t hurt. Just because we think we can separate our jokes from a real community doesn’t mean you aren’t causing damage. Just because you haven’t called a special needs person a retard doesn’t mean that you aren’t making fun of them. ;What exactly did you mean when you thought you looked “so retarded” in that picture you didn’t like of yourself?

Why do you want to use the word? You don’t know? Why use it? Use another word, or try a compliment.

Stop being lazy and pay it forward

I had a very grumpy moment (well, more like extended moment) last night. This world is not helpful even in the least for wheelchairs and the differently-abled. Please, if you see someone with a stroller, wheelchair, cane, etc.. take the bit of energy and jog ahead to open the door. Even if you pass someone trying to get through a door you are not entering, how long does it take to hold it open, let them through and then go on your way? Two maybe three seconds? Pay it forward.

This week I did a few very simple things with Cara, grocery shopping and picking Natalie up at preschool. Throw in her kidkart (chair on wheels) and the simple becomes complicated. Cara and I became a spectacle. Lots of lazy smiles and concerning looks. That does not: A. make me feel better ; B. make Cara feel better ; C. Help in any way! Opening a door or moving to the side a bit so I can easily pass is worth a million smiles.

Here is what a trip to the grocery store is like for us: I am pushing Cara’s chair ahead of me with my left hand and pulling a cart behind me with my right hand. Cara is not able to sit in the grocery cart or in one of those handy-dandy back or front carriers. I leave my cart in a central location to push Cara and quickly grab what I need from the produce section and return to deposit my veggies. When I get back to my cart, all the while pushing Cara in her chair, I am greeted with an annoyed shopper because my cart is in front of the apples. I apologize, move my cart and am scolded with a half-smile and slight tilt of a head. Instead of simply applying the 1/2 pound of pressure and taking seconds to move my cart out-of-the-way, this individual stood there, with an annoyed scowl on their face, looking around and waited for me to come back. I don’t ask for help but I can’t care and think about healthy people who refuse to help themselves.

I use to carry Cara into Natalie’s school when picking her up in the afternoon. I juggle Cara, Natalie’s school items and Natalie who needs to hold my hand in the parking lot. Cara is not getting any smaller and is not able to hold herself. She is not a baby anymore. Cara is 2. It takes both arms and a lot of arm and back strength to accomplish a simple preschool pick-up. Yesterday I decided to put Cara in her kidkart to pick Natalie up. Well, I thought this would be easier. Not the case. This school doesn’t have automatic doors and has spaces that fill quickly with children and parents. I open the door, hold it with my back and pull Cara’s chair through the door, while parents just stand and wait for me (they don’t have their kids yet). I have to do this a total of four times (two doors in and two doors out). Luckily I have become pretty good at this. I can barely move 6 feet to tell Natalie that I am here because children are running around and colliding into Cara’s chair. All the while parents are chatting and completely unaware of where or what their kids are doing. Natalie is trying to open and hold doors for me, not because I asked her to (I didn’t) but because at 4 years-old she wants to help and is aware. Most would argue that this is something that she is accustomed to because Cara is her sister. Probably, however, she is 4 which includes the attention span that comes with being 4. She has only been alive for 4 years and is more aware of her surroundings than adults ten times her age.

I don’t blame a culture that is ignorant and uncaring. I blame a culture that is unbelievably lazy and unaware. People fill an elevator, circle and circle for closer parking (or take the disabled spot), use the button that will automatically open a door (meant for the disabled), leave a grocery cart in a parking spot etc..etc.. all because we are lazy. L-a-z-y! It is no wonder we are battling childhood obesity, our children follow our example.

Cara deserves to be out in the world like everyone else so I am not going to do the easy thing, hire a nanny and leave her at home. This is not a temporary phase for us. She loves the grocery store. She loves seeing all the kids at Natalie’s school. She enjoys going to dinner with her family. She doesn’t want to be a burden on her family or the world. It is not her fault that she is a burden, it is ours. It is our fault that the world is so hard to maneuver for the differently-abled. She didn’t ask to not be able to walk. No, we didn’t cause it, but we did create a world and culture that make it difficult for her to freely enjoy it. We did that and we can fix it. Cara is lucky to have Dan, Natalie and myself to help her. Imagine the world of a differently-abled person that does it alone? There has been times when someone has helped make the world a bit easier for us. Stop being lazy and pay it forward.

[I choose to use the term differently-abled because my child and all those like her, are not broken]