Clinic Update

Mollie had a great in-and-out clinic visit today!  Her counts were perfect:

Plt:  209
Hgb: 12.7
WBC:  6.8
ANC:  3700!

She is enjoying science camp this week in the mornings, followed by afternoon errands.  Today it was oncology clinic, tomorrow it is her follow-up neuropsych visit. 

On a different note, last night we found out that Mollie, Lucy, and Liam's second cousin was diagnosed with Hodgkins lymphoma.  He's only 10 years old.  Our hearts go out to their family.  We know the awful feelings they are experiencing.  Please keep them in your thoughts and prayers!

Fundraising

Why haven't we done any fundraising for pediatric cancer in a while?  Numerous reasons.  Just being busy with moving to a new state & raising three (awesome) kids.  Feeling the need to take a break from cancer since the end of Mollie's treatment last year.  Maybe some confusion about which charities to support.

As the 3rd anniversary of Mollie's diagnosis rolled around this June, Matt and I had a serious talk about starting a foundation in Mollie's name to raise money to donate to a pediatric cancer organization of Mollie's choosing.  We still intend to do this someday, but the day after this conversation I saw a post on Facebook that seemed to be speaking to us.  The post, from CURE Childhood Cancer, a nonprofit that I trust and support, said

"Are you running in the ING NYC Marathon?  Check out what our friends at iRunnerBlog & Brooks Sports are doing and join their fundraising team to raise $50K to support CURE Childhood Cancer!"

It just so happens that Matt had already won a spot in the New York City Marathon and was planning to start training in July.  It seemed like the perfect opportunity and motivation to raise money for a pediatric cancer nonprofit organization.  CURE Childhood Cancer is based in Atlanta and provides funding for childhood cancer research grants, pediatric oncology fellowships, and patient and family support and education.

We are trying to raise $2500 by November, so please spread the word and help us reach our goal!  Click HERE to donate.  I still need to get some better pictures on our page and hopefully figure out how to put a button on the blog.

Neuropsych. Evaluation

Well, we have finally started Mollie's neuropsych evaluation.  It is going to happen over 3 appointments and we did the first last week.  It was was 3.5 hours of testing.  First we met with the doctor and talked together about Mollie's general disposition, likes and dislikes, and aptitude for different subjects.  Then came the wait.  Mollie met with the testing specialist (XO) for 3 hours, while I sat in the waiting room filling out a questionnaire and surfing the net.

At the end of it all, XO brought Mollie out to me and commented, "She's bright.  Very bright!"  So, she has about another 1.5 hours of testing left.  Her first grade teacher will fill out an assessment and Matt and I will send in our independent evaluations as well.  Then we will meet and discuss the results of the evaluation.

The point of all this?  Well, there are known late cognitive effects of chemotherapy (that happen months and even years after the end of treatment), particularly from the methotrexate she received in her cerebro-spinal fluid at least 15 times.  So, the idea is to perform a baseline analysis to make sure all her learning needs are being met currently and to establish a baseline from which to judge any future changes.  We need to know how Mollie learns so that we know what changes to look for and have an idea of how to help her should she need it. 

I feel that this analysis will be very useful; monitoring the long term side effects of the chemotherapy is incredibly important for Mollie's long term health.  While I know that the oncologists recognize that, I realize they are also primarily focused on helping these children survive (and rightly so).  That puts a lot of responsibility on the parents to make sure that the children receive adequate long-term follow-up care.  We are trying our best to stay on top of all of this, but it's hard because so little is known about the long term effects.


Coming soon... a post on fundraising!  Matt will be running for a CURE in November and we can use all the help we can get!

Norway (Warning: Lots of photos!)

The girls with Uncle Sam in Balestand

Yes, we just got back from a family vacation to Norway!

The air was crisp, clean, and cool.  It was light ~21 hours a day.  It was one of the most enchanting places I've ever been!

Just outside the Barony at Rosendal

Matt's parents invited us to join them on this trip, that included a stay at a friend's sheep farm located right on one of the southwestern fjords.  It was an idyllic location and the girl's had a wonderful time playing in the century-old farm house, feeding the sheep, fishing, and touring around.

Calling Cornelia, the head sheep

Aboard the ferry... it was windy!

Mollie's favorite flower- foxglove

Lucy and Liam at Bulvik

Charlie, Matt, and Liam awaiting the ferry

We spent a (very) little time in Bergen, and then took a quick but picturesque tour of the Sognefjord via the historic Flåm railway and ferry ride, stopping overnight in Balestrand.

At the Bryggen

 

Janet and Mollie warming up at a cafe in Bergen

Overall, it was a great trip!  The kids traveled very well and we had some great laughs along the way! 
 

Mollie enjoyed picking flowers around the farm house

3 years ago today...

Mollie was diagnosed with leukemia.  What started out as a doctor visit for a fever and malaise turned in to every parent's worst fear.

I remember the events of the previous day- the visit to Dr. B and her sending us to the ER at Children's Medical Center. Waiting for endless hours in a triage room, with Lucy in one of those big metal cribs they have in the hospital and Mollie scared to use the funky toilet, feeling annoyed but increasingly worried.  They weren't really doing anything but giving her IV fluids, tylenol, and pulling some labs.  Child life was wonderful!  I can't remember who it was... maybe Katie or Jamie?  They brought in princess movies, games, and a tiara and wand.  I had to go teach a class that night. By the time I returned to the hospital, Mollie had been admitted and transferred to a room on the 5th floor, where she spent the night.

Much of what happened next is a blur, but she did have a bone marrow biopsy at some point during the day.  What I remember most vividly is Dr. Vega coming in to the room and saying with his Spanish accent, "She has leukemia."  I can still hear every inflection in his voice, like a slow motion replay. 

In some ways it seems like such a long time ago, but at the same time, just thinking about it makes my heart race and my blood pressure rise.  That evening, Matt and I remarked that we were fortunate that we had a diagnosis, and we to focus our energy on healing Mollie, not dwelling on unanswerable questions and sadness.

.......

Happy Day, Mollie!  You are one tough cookie!

Clinic Update

Good thing school is out because someone is too cool!

Yesterday was a fun-filled first official summer vacation day- we spent the morning playing at the splashpad with Ryan (Lucy's *boyfriend*) and Carter.  And I left the camera in the car.  Darn!  Then, Matt took the kids fishing with a coworker and his kids.  They had a blast, caught lots of fish, and got home WAY after bed time!

So, I was worried they were all going to be in a bad mood on clinic day.  Surprisingly, they were well-behaved, and the clinic visit was really quick.  We got the ball rolling for the neuropsych evaluation (hopefully to be conducted sometime in July) and, best of all, great counts!

WBC 10.9
Hgb 13
Plt 181
ANC 7700

What a great way to kick off a week that includes our 10th wedding anniversary, Mollie's 3 year cancer survivor anniversary, Father's Day, and our first international family vacation!  We sure know how to pack it in, don't we?

Sunscreen Update

I mentioned issues with sunscreen in my last post.  Obviously, avoiding the sun is impossible since we live in North Carolina.  Finding a sunscreen that works is important.  In my research, I came across the Environmental Working Group's Sunscreen Guide - a great website that assigns a "hazard score" to sunscreens based on their UV protection and health concerns.  They rank each of the specific ingredients as well, AND tell you how much data there are to support the rankings.

I looked up the two sunscreens we had used on Mollie- one contained octobenzone and the other contained retinyl palmitate (yes! vitamin A and it was not listed in the active ingredients of the Neutrogena Sensitive Skin sunscreen).  So, armed with this new info, I purchased two new sunscreens and we have success!  They don't rub in as well as the others, because they contain zinc oxide, but we will take that over an allergic reaction or sunburn any day!

This is Mollie's last week of first grade (how did THAT happen?).  She's looking forward to some great adventures this summer, but we will kick things off with a clinic appointment next week.  Just writing that reminds me that I need to ask Dr. J about when she should do the neuropsychiatric assessment.