6.17.2013

Five

Today marks FIVE years since Mollie's initial diagnosis with ALL.

Since Mollie's chemotherapy treatment ended, life has been full of all kinds of wonderful and challenging adventures.  Mollie has been in dance performances, girl scouts, taken tennis lessons, and played her first season of basketball.  We live in California now! Life is full of family, beautiful weather and landscapes, new and old friends, weekend adventures, church, school, work, etc.

Matt and I still think about leukemia often.  Not every day, but often.  I can still hear the exact inflection in Dr. Vega's voice when he said to us, "She has leukemia."  The hectic events just before and after getting the diagnosis come back to me in flashes.  My stomach still drops in that same way when Mollie has a fever or seems lethargic and ill.

When we first started reading the treatment protocol, 5 years seemed like a lifetime away.

Yet here we are. These 5 years have been a second chance.  Mollie has turned into a wonderful, sweet, warm-hearted person!  She is healthy, confident, sharp as a tack, and just cares so much about PEOPLE!  I no longer keep calendars for medications, place hand sanitizer on every horizontal surface, or carry a Huber needle and EMLA cream in my purse.

I feel a little ambivalent about this day.  Yes, five year event free survival rates are used as an endpoint to assess the effectiveness of different treatment protocols.  And the risk of relapse drops (I think- will double check the numbers with the doc tomorrow).  But those numbers don't predict what is going to happen to my family, my child.

Cancer took away our sense of ease and safety.  I am keenly aware that life could change, again, for us in a heartbeat.  Doctors and scientists are still learning, along with us parents, what the long term effects of 3 years of oral, IV, and intrathecal chemotherapy are on growing bodies and minds.

Mollie is sure of herself, yet aware of her limitations.  She knows about her health issues and is  motivated to exercise, eat healthy foods, and take care of her body.  Though it won't be carefree, I am very hopeful for her future.


My heart goes out especially to the families of those children that didn't make it to five years.  And those who continue to struggle.

Mollie is excited to host her first ever lemonade stand to raise money for the Alex's Lemonade Stand Foundation in honor of this momentous occasion.  Please find her fundraising page here and stop by in person if you are local!



7.11.2012

Pneumonia No More

A difficult thing about parenting a cancer survivor is not freaking out about relapse with every cough, fever, or "I'm not feeling good" complaint.  I mentioned Mollie's lingering cough in the last post-  this cough had been with her since Memorial Day.  She had been through two bouts of antibiotics, and a few days of Claritin (or Allegra?), and seen three different doctors- the darned thing just wouldn't go away.  None of her medical team seemed very concerned and chalked it up to allergies or "something viral".  

But, around the 4th of July we got fed up and worked ourselves into a bit of worry about the stubborn cough.  I took her in to see a different doctor than we had seen previously.   Dr. Thomas also thought it was probably residual bronchospasm from having a cold, but he did an X-ray to rule out anything else since the cough had persisted for more than 4 weeks.  He said the X-ray looked fine and sent Mollie home with a low dose, short course of steroids to help kick the cough.

Lo and behold, we get a phone message from the doctor's office a few days later telling us it was important that we call back because there was some additional information about Mollie's X-ray that we needed to discuss.  Of course, they were at lunch when I got the message,  so we really freaked out talking about all of the what-ifs.  Seriously, if you are in the medical field, please don't leave those kind of messages for people who have been through something like cancer.  Make sure you stick in a "don't be alarmed" or something.  Geez!  Oh yeah, and it would have been nice if someone had mentioned that a radiologist was going to review the images and get back to us-- we might not have panicked if we had been expecting a follow up call from the doctor!

Anyway, the outcome was that Mollie had a little bit of fluid in her left lung indicating pneumonia and they put her on broad spectrum abx in addition to the steroid.

We went back for follow up yesterday and the doctor (and radiologist!) confirmed that the pneumonia had resolved.  Phew!

Mollie and Lucy head off to Camp Rainbow this weekend.  While they are gone, the movers will come do their thing.  We will pick the girls up from camp and then start the cross-country trek to our new home in California.  Lots of balls in the air and I can't wait until it is over, however I'm a little sad and reluctant to leave the life and friends we have here in North Carolina.

6.20.2012

Clinic Update

I'll cut right to the chase... Mollie's blood work came back fine!  Happy dance!

Dr. J thinks this lingering cough is allergy/post-nasal drip; her lungs sound great and she has a prominent lymph node or two, consistent with a cough/allergy.  No evidence of bronchitis or strep. Unfortunately the blood draw was an arm stick (not the preferred finger stick), but Mollie was a trooper and didn't even cry!  Her WBC is 12.3, ANC is 8000, hemoglobin is 13.6, and platelets are 237,000.   All of her other blood chemistry (electrolytes, liver markers, kidney markers) looked fine too. 

This was Mollie's last appointment at Levine Children's Hospital.   It is a great clinic and a wonderful group of people.  We will miss the staff and Dr. J!  Hopefully the new clinic will be up to snuff!

6.17.2012

Four Years

Today marks four years since Mollie was diagnosed with preB cell acute lymphoblastic leukemia.  June 17, 2008 seems like ages ago, but as I was recounting the story to a new friend the other day, I was surprised at how quickly all those intense feelings came flooding right back.  I still think about Mollie's diagnosis and treatment almost every day- whether it's interacting with the friends from oncology clinic, worrying about some symptom that one of the kids has, or just running across some paperwork or memento.

I know Mollie also experiences some intense emotions related to her cancer.  She doesn't like to talk about her leukemia to anyone except us- I think it is too hard for her to keep her feelings inside.   She is proud to be a survivor, but for now that's about all that she wants to share with most people. 

Four years from diagnosis, and more than a year off of treatment, Mollie is doesn't show too many outward signs of her 2.5 years of chemo.  Her hair is much longer and thicker than it has ever been.  She still has some balance and weakness issues in her legs; it is improving (especially with dance classes).  At the moment, she has a nasty cough that has been slowly improving (too slowly for me!).  We have seen the doc twice, but antibiotics are not helping.  We have her regular oncology appointment with Dr. J on Tuesday- I will feel better after talking with him.


School's out, we are getting ready for our big cross country move,  and we are enjoying late spring in North Carolina- chasing fireflies, spending evenings at the pool, and picking wild blackberries, honeysuckle, and Queen Anne's lace. 

Happy Father's Day!  My three are missing their Daddy and can't wait to see him next week!

Will update again after clinic...

5.07.2012

Where Did April Go?

Spring is in full swing around here, and summer is just around the corner!  The next month is going to be the [relative] calm before the storm.  Starting in June we have the last day of school, Mollie and Lucy's ballet performance,  ballet camp,  Camp Rainbow, and then we are moving at the end of July!  And I have so much to accomplish to make that all happen smoothly!  I'll say it again... we are really excited to be moving back to California!

Mollie had a clinic visit a few weeks ago and everything went just fine.  Her blood counts were perfect and Dr. J said that she looks great and is growing well.   We had her regular pediatric visit as well, and Dr. L confirmed that Mollie appears to be very healthy.  One thing that both her doctors have noted are shotty nodes in her neck.  These are small, hard lymph nodes.  Dr. J said that they can mean that she is fighting an infection, or since they seem to be persistent, it might just be the way her nodes are after fighting multiple infections during chemo. 

Lucy is almost the exact same age that Mollie was at diagnosis, a fact that I do think about often, especially with the plethora of bruises that Lucy always has on her legs.  She is a rough-and-tumble girl though, and the bruising just comes with the territory.

Liam is a talkative two year old these days.  He tries to keep up with Lucy and Mollie, but is content doing his own thing when they are too busy for him. He's a smart little guy who wants to do everything by himself ("No!  Liam do it!").

We signed the kids up for the Blanket Fairy's Christmas in July again.  It was so great last year- we are all very touched by the generosity and kindness of the volunteers.  Next year, we plan to be fairies for another family. 

There are quite a few spots left for this summer, so if you have a child going through treatment or in remission, sign them up at the link below:

3.06.2012

2 x 4 = 8!

Today we celebrate Mollie's 8th birthday!  And with Liam being two and Lucy being four, it makes a lovely equation. 

Mollie is doing just great!  She was happy to find out that today is also Super Tuesday! She is doing very well in school, building up strength and having fun in dance class, and being a sweet sister and daughter.  Boy are we glad she was born!

In other news, we have made the decision to move back to California this summer! More details to come...

12.21.2011

Merry Christmas (& Clinic Update)

Wow!  Has it really been over 3 months since I updated the blog?  I started a full-time job in a nutrition research lab in August and time just flies these days!

Mollie had her quarterly clinic appointment yesterday, which consists of a physical exam and CBC with differential.  Dr. J says she is looking great and she has the blood counts to prove it!  Her ANC is 4000- we got our Christmas wish! We have weathered a few fevers and colds without having to go to the hospital (although the anxiety made me want to check in to a mental hospital!).  She is taking dance classes now (ballet, tap, and jazz) and is just enjoying being a kid.  She is doing great in school, but her neuropsych evaluation revealed some areas of relative weakness.  We are looking forward to meeting with a team at her school in January to develop and IEP or 504 plan to address these areas.

Lucy and Liam are doing just fine, too.  We found a wonderful child care center and they have adjusted well.  It is really warm and family friendly.  Mollie goes there for after-school care and loves being there with her siblings!

I wanted to send a special THANK YOU to everyone who donated to CURE Childhood Cancer for Matt's NYC Marathon fundraiser.  We raised $2150 for pediatric cancer research and support and Matt had a personal best!

Mollie doesn't have to go back to clinic for 3 months(!) but I promise I will update the blog before then.  I think I need to do a big photo post.

Merry Christmas and Happy New Year!