Friends

We had a delightful weekend last weekend, filled with appreciation of the lovely fall weather and a ~3 mile hike on the pinnacles trail at a nearby state park topped off by a fall harvest doughnut!  Matt and I were so impressed that Mollie hiked the whole 3 miles without complaint.  It was moderately strenuous, but Mollie was skipping and running and picking up trash.  Lucy, on the other hand, was worn out after the first mile.  She ended up getting carried (and our backs are still feeling it).

Observing Mollie's stamina now makes us realize just how much the chemo affected her.  For the past 2.5 years of treatment, she didn't appear to experience too many side effects; yes, she lost her hair and had the occasional bout of nausea, but for the most part, she was very good-natured and you could not tell she was on chemotherapy.  But comparing her energy level now with just a few months ago, the difference is very apparent.  We are having fun with our strong, vivacious girl!

Despite her apparent good health,  this week found me worrying about Mollie.  Wednesday afternoon we went to the pediatrician to get her flu shot.  Before giving her the shot, they took her temp (standard procedure since the flu shot itself can sometimes produce a fever as an adverse reaction).  100.1- a fever!  Panic set in and I called oncology right away.  Their advice was to watch and wait.  If it stayed up for more than 24 hours, bring her in.  That evening, the temp came down, but Mollie started complaining of leg pain.  A low-grade fever and leg pain are classic symptoms of leukemia.  All I could think was relapse, relapse, relapse.  No fever on Thursday or Friday either (although my favorite Vicks thermometer had a dead battery so I was relying on the back up).  A friend encouraged me to get a CBC if it would make me feel better (thanks for the support Michele) and our pediatrician indulged my request (thanks Dr. L) when we took her in Friday for her flu shot.  Her counts look fine!  An unexpected bonus in all this is that the lab drew Mollie's blood from her arm.  She has been more scared of this than almost anything else (all her blood draws have been through her central line or finger sticks in the last 2 years), but she did it and she was fine.  So, according to Mollie, she's ready to get her port removed.

Mollie was ecstatic (Lucy too) last night because her bff Isabella (and family) came from Augusta to visit and walk with us in the Walk For Wishes.  They had a blast playing together at our house and Matt and I really enjoyed spending time with Marv and Michelle.  Goodness, we miss them all!  The kids had fun walking around the empty amusement park this morning and eating doughnuts afterwards.  The walk raised over $65,000 for Make-a-Wish!  Thanks to everyone who donated!

Mollie cried all the way home because she was sad to leave her best friend... but uncle Sam is coming to visit tomorrow so that will provide a good distraction. 

Hope you are enjoying your weekend! I am so thankful for friends near and far.

Post -script:  Hmmm... I just noticed I mentioned doughnuts twice in one post.  We hardly ever have doughnuts, so how did this happen?  Just lucky, I guess!

Another Week

We would love it if you can make a donation to our Walk For Wishes team! 

Mollie has had another good week and I can honestly say I didn't think about cancer or relapse very much!  The biggest problem she faced was something about silly bands at school!

We got our final approval for Mollie's Make-a-Wish trip and the tickets and other info should be arriving any day.  Mollie and Lucy are so excited that we get to take a limousine to the airport!!  Matt and I are pretty excited too- we don't have to drive or pay for parking!

I am still struggling to figure out my new, post-cancer treatment normal.  Of course this is complicated by living in a new place.  Everything in our lives is vastly different from what it was two years ago.  I'm still trying to find my place.

We are all enjoying the cooler fall weather!  The 49ers are playing the Panthers next weekend.  Neither team has won a game this season, but Mollie and Lucy have declared themselves Panthers fans and Matt and I both grew up in the bay area so we thought it would be a fun game to go to.  Anyone have tickets they want to get rid of?

Happy Weekend everyone!

Clinic Update

We went to Augusta yesterday for the day for the ribbon-cutting ceremony for the newly remodeled hem/onc clinic.   We were so happy to see the familiar faces of the doctors, nurses, friends, and staff that have helped us along this journey.   The new clinic is a vast improvement, but the staff are really the ones who make the clinic.

Mollie and Dr. V at the ribbon cutting.  He diagnosed her leukemia in 2008.

Side note:  I  won't be making that CLT-Augusta round-trip in one day any time soon again.  It is such a long drive (Michelle, sorry we didn't drop by.  There was just no time!!).  We checked on our house- depressing to see it sitting there empty.  It smells stale and closed up.  Not our home any more.

Mollie had clinic today in Charlotte.  It feels strange to be starting up at a new clinic for follow-up, but Dr. J and his nurse, Jackie, are very sweet.  The nurse is great with Mollie, finding her the foamy stickers and shiny band-aids that she requests!  The port access was swift and it worked perfectly.  Mollie's counts are good-  WBC 8.2 and ANC 5100.  Wow!  I am learning a little bit about what kind of CBC numbers to expect after treatment, but it still looks weird to me.  Her platelets are down a lot from last month, but well within the normal range, and her hemoglobin is about the same as last month.  She also had a palpable lymph node in her neck, which they will watch.  I am happy her counts are great, but I just can't let my guard down.  Matt and I know how quickly things can go from fine to critical.  Any little thing, like the lymph node, really gets me worried!  However, we got the go ahead to schedule Mollie's port removal surgery (will have that done in Augusta) for mid-November. 

I feel like I should be really pleased with how Mollie is doing, but instead I am just uneasy.  With treatment, there were clear benchmarks and we knew when to worry and when to breathe easy.  Now, things like the lymph node and skin irritation, make me want to request a bone marrow biopsy right away!!  PTSD is putting it mildly.

Hope

Today is the last day of Childhood Cancer Awareness month, but these kids will battle all year long.  There is HOPE though.  A news article came out yesterday about a new treatment for neuroblastoma, that combines chemotherapy with immunotherapy.  They halted the clinical trial early because the immunotherapy was so much more effective than the standard therapy.  This same approach is now being tried with other pediatric cancers.  There is hope!

Also, I have been in contact with a study coordinator at Stanford who asked me to post this to help her recruit subjects (adults) for this program/study:

Stanford University is running a 6-week workshop that gives people who have
survived cancer two or more times the skills needed to regain their life back
after cancer and take control of their health. Participants also connect with
other cancer survivors. Go to http://cancersurvivors.stanford.edu  to learn more and sign up.

If you know anyone who qualifies, please forward this information to them. This is an online workshop so I don't think you need to be local to participate.

Lastly, if you are able (and believe me I know it is hard in this economy), please consider donating to our team for the Walk for Wishes to raise funds for the Make-a-wish foundation.  They do wonderful things for kids!

Potpourri

This off-therapy business is uncharted territory for us.   Mollie is losing her hair, again.  She has bouts of itchy spots, like hives or bug bites, that respond to steroid cream or benadryl. And she is emotional.  Matt and I are assuming all the adjustments going on in Mollie's body explain these different symptoms.  We have been poisoning her with chemo for almost 2.5 years, and suddenly, it is gone.

My feeling is that the hair loss, which has slowed down considerably so it is more like "thinning", is probably due to her last treatment with vincristine in August.  Apparently, some batches of that drug, especially in combination with a virus, can cause hair loss.  It started when she was hospitalized in early Sept., so the timing makes sense.

A lot of children have skin and allergy problems after treatment.  Maybe the immune system goes into overdrive once the chemo is withdrawn.  We will keep a close eye, with the clinic phone number close at hand, and wait.  The good news is Mollie has lots of energy!  She has finally reached a point where 2-year old Lucy can't keep up with her (it used to be the other way around).  I love it!

We are going to apply some of that energy to the Walk for Wishes this year.  This walk raises funds for the Make-a-Wish foundation.  Make-a-Wish does not give money to cancer research or treatment (we have raised money for LLS in the past 2 years), but it goes to something equally important: providing joy to children (& families) in need.  Mollie and Lucy are really, really looking forward to going to Disney World in December, so we thought this would be a great way to channel the excitement!  The walk is Oct. 23 at Carowinds in Charlotte.  We welcome anyone who wants to join our team and walk with us.  Please consider making a donation to our team in honor of Mollie through this link.

When Kids and Wine Go Together

 The cure rates for pedatric cancers, leukemia in particular, have shot way up in the last 30 years.   Still, the 5 year event-free survival rate for ALL is around 85%.  That means that if a whole classroom of kids was diagnosed with ALL, within 5 years ~4 would relapse or die.  I don't know about you, but I would find a different school.  Unfortunately, it doesn't work that way.  Cancer can strike any child at any time.  It could be your son or daughter, grandchild, niece, nephew, cousin, neighbor, or someone in your child's class.

There are a lot of "facts" about childhood cancers being thrown around on the internet and I don't have a lot of time or energy to fact check, but the bottom line is the way to prevent and cure cancer is through research and that requires money.  Pediatric cancer does not get a lot of research money.  Why?  It's not profitable for big pharma companies, it is relatively rare (so hard to get enough numbers to do big studies), and (I think) the kids can't advocate for themselves (and their parents are too strapped from the whole ordeal).

What does this have to do with wine?  Well, it is one of the few "gold ribbon" products that you can purchase to help support childhood cancer organizations (you can choose between two).  Order your bottle of 2009 ONEHOPE Arroyo Seco Reserve Pinot Noir before the end of September and $5 per bottle will be donated to Alex's Lemonade Stand or the Children's Miracle Network (both awesome organizations).

It is Childhood Cancer Awareness month.  How many gold ribbons have you seen? 

Practically Perfect...

It has been a good week!

Mollie and I went to see the musical Mary Poppins on Tuesday.  We got dressed up for the occasion (and she dressed her doll to match).  It was fabulous evening.  To start off, we got a great (and free) parking spot just a block from the theatre.  That left us plenty of time to grab quesadillas before the show.  When we got to the theatre, they upgraded our seats... on the house!  The show was magical!  The new songs (like Practically Perfect) fit seamlessly into the story.  It was a fun show and the actors interacted with the audience quite a bit; I think Mollie is starting to appreciate how rich live performances are.

This weekend we took our inaugural family camping trip.  There were a few bumps- Liam tipped over in his chair and scraped his face and our old tent broke when we were breaking camp (better than when we were setting up camp)- but all in all it was a good time!  The weather was lovely and the park (Pilot Mtn., NC) was very pretty.  The kids took to it very well and enjoyed the experience.  We are looking forward to doing it again in the near future!