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Thursday, May 23, 2013

LLS Corporate Breakfast

As this year's Honored Hero, I was invited to give a speech this morning at the Corporate Breakfast for the Leukemia and Lymphoma Society.  I was so glad to be out of the hospital and able to attend!  This breakfast hosts potential local corporate sponsors for the Light the Night Walk in September, in the hopes that these companies will form teams (these teams are usually very successful fundraisers).  I was asked to share my experience with Lymphoma and my speech is below:

I am Caitlin Mullinix and I am probably not that different from you.  I grew up in the suburbs of New York, went to a small liberal arts college, got a graduate degree in hospitality (and met my husband in the process), and we moved to the Bay Area to start our lives.  In 2011, we felt like life was really beginning for us…..we were going to have our own little family.  I was pregnant and due in September.  I had an unproblematic pregnancy and, even though it ended in a c-section, we had a healthy baby that we named Nicholas.  The early days at home with Nicholas were full of the typical baby-related challenges, as we had expected.  But things didn’t get easier as the days passed.  I experienced what I thought were complications from the c-section and pregnancy….fevers, night sweats, shortness of breath.  And boy, was I tired.  But I had a newborn, and I figured, “so this is what everyone is talking about!” 
After several visits with my OB, my symptoms eventually landed me in the emergency room.  A battery of tests ensued, which revealed an enormous mass in my chest. No wonder it was so hard to breathe when baby Nicholas rested on my chest.  The mass was biopsied immediately, but the surgery proved to be too stressful for my already strained system.  I wasn’t breathing well during surgery, so I was placed on a ventilator and stayed in the ICU for a week.
Nicholas was four weeks old when I found out I had Hodgkin’s Lymphoma.  Doctors began chemo immediately – my first treatment took place when I was asleep under the power of the ventilator.   When I woke up, reality sunk in.  I had cancer. What a frightening word.  Cancer is something that happens to other people, not to me.  I was only 32.  I had a new baby that needed me.  I had to return to work.  I had plans.  This was not my plan.  But, everyone emphasized that this was a good cancer to get.  It was highly treatable.  I’d be free of it and move on with my plans. 
For the next 6 months, I underwent the standard treatment for my disease.  Maternity leave from work became disability leave.  Family and friends came from all parts of the world to take care of me, and my husband, and baby Nicholas.  While I had this beautiful little boy to adore during this really tough time, we did have to hire a nanny because I didn’t have the energy to be a full-time mommy.  I also had to spend lots of time at the infusion center. 
The switch from doing the caring to being cared for was emotionally very difficult.  I was supposed to be the nurturing one.  For nine months, I had been “becoming” a mom.  Now, I was back in the arms of my own.  And even though I had all this support around me, I couldn’t help but feel alone.  Although Lymphoma is the most common cancer among young adults, I felt so isolated because of it.
After six months of treatment, it became clear that my disease was unusually aggressive.  It turns out that my Hodgkin’s wasn’t the easy kind to get rid of.  I transferred from CPMC to UCSF and met with Dr. Andreadis.  During the next six months, we attempted several more chemo regimens in an effort to reduce the amount of disease in my body, but nothing worked very well.
Finally, in October of last year, I had a stem cell transplant at UCSF.  My sister, who is three years younger than I, donated her stem cells to me.  Life stopped for all of us, not just me.  She had to leave for a week from her final year in law and business school (not easy), to come out West.  My mom came for the month that I was in the hospital and was with me there every day.  My husband became both mommy and daddy to Nicholas.  My in-laws came from Singapore to help.  And my mother-in-law came for several months and moved into our home to be my caretaker after transplant.  After being released from the hospital, I was under house arrest for a few months.  I really only left to go to the clinic twice a week.  My immune system was as fresh as a newborn’s and the exposure to germs in the outside world was just too risky.    
The transplant was successful in that my body has, so far, accepted my sister’s cells. Some disease did manage to rear its ugly head in the months afterwards, so Dr. Andreadis has me on a brand new drug to the Hodgkin’s game in an effort to keep the disease under control until my new cells are strong enough to fight on their own.  The hope is that in these next few months, my sister’s healthy cells will take over and kill those wicked Lymphoma cells that are left in my body. 
Personally facing cancer opened our eyes that it can really happen to anyone.  And in July of last year, it happened to our family again.  My dad was diagnosed with bladder cancer, and is now himself battling the disease.  When you are healthy, cancer is just something that you hear about, read about, and see in movies.  But when you yourself get sick, you find out that it’s actually all around. 
I am hopeful that my cancer will go away completely.  And that my dad’s will too.  But our fear of cancer will never fade away.  Until there is a cure, there is always uncertainty. In the meantime, we’ve learned that life does go on.  Cancer just becomes part of it, some days more than others. 
We always talk about cancer being cured someday.  Let’s make someday today, for all of us.  Please make a commitment to fighting cancers today by putting on the red blood drop pin at your place setting.  It is a symbol that together, we are committed to finding cures.   I hope as you go about your day today and people ask you about your pin, you’ll share what you’ve learned here today.
We brought Nicholas with us.  He was very chatty and active during the 45 minute presentation, so unfortunately Jonathan had to be out of the room during my speech (Nicholas actually wanted to be up at the podium with me).  But he was able to snap a few pics beforehand!

Nicholas wearing "Da da's" shirt



Wednesday, May 22, 2013

Hospital Again

Last night around 5pm, my skin started burning, as if I had sunburn all over my body. It was also really red, like a lobster. I realizes fairly quickly that I was probably having a reaction to the CT contrast (dye) that had been injected earlier that day. So after putting Nicholas to bed, we headed over to the ER (luckily, Joe and Diane were in town and stayed with Nicholas!). The ER was extremely quiet and I got attended to right away. To my dismay, I was admitted to be observed overnight. I had spiked a fever and this in particular made the doctor concerned. They gave me some antibiotics and other meds that I don't remember. This morning my skin looked better (not perfect, but improved). After some ho-humming about being discharged, we are now waiting for my for the official papers which will give me my freedom today!

I'd love to show you my very red skin but the one pic I have is extremely unflattering. So instead I'll share this one below of the strike taking place right now at UCSF (which is why the ER was dead last night. Nurses aren't on strike but practically all other hourly employees are. They are sending patients to Stanford and Davis for chemo because there is no pharmacy staff to mix the drugs. Transplants are postponed. Nurses are staffing the food lines in the cafeteria. It's a real pity for those with life-threatening issues and if anyone cares to send a letter to the judge who allowed this to happen, his name is David Brown and he's in Sacramento.  Oh and it's not only at UCSF but also at 5 other UC medical centers!)

Tuesday, May 21, 2013

I had a scan today......

And Dr. Andreadis already called to say that the preliminary report is good!  Many "things" have shrunk and although those two little nodes are still there in my lungs, they haven't grown at all.  So that's good.

I'm also dealing with a bit of GVHD these days.  My liver "numbers" are elevated a bit and the steroids I've been taking for the last few weeks don't seem to be having any impact.  So last week, NP Stephany adjusted my meds and we'll see if that helps.  If there's no change, a liver biopsy might be in my future to confirm that I do indeed have some GVHD there (docs need to know so they aren't treating me blindly...ugh....).  But one day at a time!

On another note, Jonathan made this pesto pasta casserole the other night for dinner and it's so delish.  The secret ingredient = olive tapenade.  Just dribble some in the middle along with some ricotta and you'll have people oohing and aahing!!


Monday, May 20, 2013

Chompers

Our pobrecito tripped and fell over a carpet last night, and banged his mouth into the floor.  Once the bleeding stopped we saw that a couple of his top teeth were misaligned, so we hopped on over to the pediatric ER.  We were so lucky that it was completely empty!  About 30 minutes later we were on our way home, with instructions to see a pediatric dentist today.  Which we just did.  

Nicholas was a champ and had a ball at the office.  Xrays showed that a couple of the teeth were knocked up and over a little.  Only time will tell what will become of this injury.  Either the teeth will fall back into place and remain viable, or one or both may die (in which case they would be pulled).  In the meantime, Nicholas is to have soft foods for at least a week and we're going cold turkey with the nighttime bottle (we had been planning on getting him off of it anyway....).  

It was really so upsetting for us to see this happen to Nicholas last night.  It's a terrible, terrible feeling to feel so helpless and to not be able to make it better when that is all your child expects.  We certainly don't want to limit this little adventure-seeker ever, but at the same time, all I want to do is keep him cuddled in my arms for eternity!





Luckily, for Nicholas, life goes on.....

Monday, May 13, 2013

Congrats Leah!

We are in Atlanta celebrating Leah's graduation from Emory Law and Business School!  Today was a lovely day -- sunny, but not hot, and happy!

Nana, Uncle Brendan and Uncle David very kindly came to SF to watch Nicholas while mommy and daddy took their first vacation in a year!  We miss him a lot though!  Nicholas has been having lots of fun at home. 

We've been having fun eating and relaxing. 

We even got to visit Leah and Frddy's Venezuelan Arepa place for lunch.  Delicioso!






Sunday, April 7, 2013

Dutch Baby (aka German Apple Pancake)

In an effort to diversify our breakfast menus, Sunday morning started off with our first crack at a Dutch Baby.  It was easy, delicious, and our little San Francisco baby loved it too.


Servings:4
Difficulty: Moderate
Cook Time:  min

Ingredients

  • 4 large eggs, lightly beaten
  • 1 cup whole milk
  • 1 cup all purpose flour
  • 1/8 teaspoon ground nutmeg
  • 1/2 teaspoon vanilla extract
  • 3 tablespoons unsalted butter
  • 2 apples (large), peeled, cored, and thinly sliced
  • 1/2 teaspoon ground cinnamon
  • 1/3 cup light brown sugar, packed
  • pinch salt
  • powdered sugar, for serving
  • maple syrup, for serving
  • Cooking Directions

    In a large bowl, combine the eggs, milk, flour, and vanilla extract and whisk until just blended, being careful to not overmix. Set the batter aside to rest while you prepare the apples, at least 20 minutes.
    Preheat the oven to 450°F.
    In a heavy, ovenproof (preferably nonstick)12-inch skillet, melt 2 tablespoons of the butter over high heat. Add the apples, cinnamon, nutmeg, and salt and cook, stirring frequently, until the apples are soft and lightly golden around the edges, about 6 minutes. Add the sugar and cook, stirring, until the apples are caramelized and very soft, 2 to 3 minutes longer. Add the remaining tablespoon of butter and stir to melt.
    Working very quickly, pour the batter evenly over the top of the apples. Using oven mitts or potholders, transfer the skillet to the oven and bake until the pancake is golden brown and puffed, about 15 minutes. Don't be alarmed when you see the edges of the pancake puff up and extend above the top of the inner edge of the pan – this is supposed to happen!
    Using oven mitts or potholders, remove the skillet from the oven and serve the pancake, sprinkled with powdered sugar and drizzled with maple syrup, if desired.
    Yield: One super-large pancake.

    Friday, April 5, 2013

    Exciting!

    Light The Night Walk Logo
    Announcing The Greater Bay Area Chapter's
    2013 Light The Night Honored Heroes!
    We hope you are as inspired by our honorees' stories as we are.  
    Read on to learn more about the faces of our 2013 Light The Night Walks.
    San Francisco Honored Hero:  Caitlin Mullinix   SF
    In September of 2011, Caitlin gave birth to her first child, a boy, named Nicholas. She was only four weeks post-partum when she was presented with the devastating diagnosis of Hodgkin's Lymphoma. Caitlin began chemotherapy immediately, but after several months of first-line treatment, it became clear that her disease was extraordinarily aggressive. So, she and her doctors made plans for an allogeneic stem cell transplant at UCSF Medical Center. After three other preparative chemotherapy regimens, she finally received her sister's stem cells on October 10, 2012. She is currently in the maintenance phase of her treatment and is looking forward to being in remission soon!  


    Napa Valley Honored Hero:  Jared McDaniel
    Jared 
    Jared McDaniel was diagnosed with acute lymphoblastic leukemia (ALL) on February 9, 2012 at the age of two.  He is currently going through intensive chemotherapy and radiation treatment with some bumps in the road, but is doing well.  His family is extremely proud of him and his courage and hopes he will finish treatment with no relapse.
      
      

    North Bay Honored Hero:  Brody Tatman  Brody 


    Brody Tatman, a loving and inspiring three year old, was diagnosed with acute lymphoblastic leukemia (ALL) in January of 2012. Brody just finished one year of intensive treatment and is now in his second month of maintenance which continues until May of 2015. He loves playing with trucks and dirt bikes, being at the beach, and watching Bob the Builder.




    North Bay Remembered Hero:  Caemon Patrick Marston-Simmons  Caemon
    On the morning of February 5, 2013, the world lost a brilliant light when three-year-old Caemon Patrick Marston-Simmons lost his battle with juvenile myelomonocytic leukemia (JMML), a very rare form of leukemia.  Caemon was a wildly precocious, very sweet, creative, funny little boy who was wise beyond his years.  His resilience, strength and bravery are an inspiration to all who knew him, but especially to his parents.


      
    East Bay Honored Hero: James Howe
    130321_James_0058 - EditedFriends and family have always said that James is "a smart, funny and cool kid", and he's stayed that way even through his battle with cancer. Thirteen-year-old James was diagnosed with Non-Hodgkin's Lymphoma on December 30th , 2011. He and his family spent New Year's Eve in the hospital, unsure of what the next year would bring. To help James in his battle against cancer, he created a fictitious villain, "The Blorg" who represented his tumor. James fought and ultimately defeated his enemy! James kept a positive attitude through months of chemo with the help of family and friends. James has finished his major course of treatment, responded well, and is now in a maintenance phase of treatment. Today, James likes playing rugby, tinkering with electronics, and being the protective big brother of his sister Emily.

     
    T-Shirt Design Competition
    We are kicking off our 2013 National Light The Night T-Shirt design competition and need your help.  The winner's design will be worn nationally on all Light The Night Walk t-shirts.  Also, the winner and image of the design will be featured in the LLS e-Newsletter and national blog post. The competition is open to the general public.  Spread the word to your community, and be sure to share the Rules and Guidelines.  

    Register Today!

    Staff Contacts
    Please visit our website at http://www.lightthenight.org/sf/ or contact your local staff.
    Napa Valley & North Bay Walks
    East Bay Walk
    San Francisco Walk
       Tiffany O'Neil
    Vicky Balchas
    Nicole Chapman Wilson
    707-544-4350 ext 2009
    415-625-1143
    415-625-1126

        
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