Clinic Update

Mollie had clinic today (I just realized I forgot to post about August clinic because Matt took her to the appointment.  Oops!).

Great news-  her ANC is 2800- perfect!  All of her other blood counts (WBC 6.3; Hgb- 12.7; Plt 219), electrolytes, and liver enzymes are in the normal range too.

But the visit was a little difficult because they sprung a flu shot on her and needed to get blood via normal venipuncture (in the arm) and not Mollie's preferred finger stick.  Mollie cried lots of tears and begged me to let her wait on the flu shot.  While it was hard for me to see her cry, it reminded me that it has been over a year since she's had any invasive procedures (besides the regular finger or arm stick) and she's forgotten what it is like to deal with surprises at the oncology clinic.

Child life was great at helping her deal with it; they gave her the option of using freezy spray (a numbing agent that they spray on the skin).  Mollie had never used it before, so they brought in a teddy bear and demonstrated on him and then let her take the bear home!  She forgot all about the pain after that.

The other good news from Dr. J (oncologist) is that Mollie now only has to be seen in clinic every 3 months!  Sept. 3 was the 1 year anniversary of her end of treatment (!) and that means they can space out the follow-up visits further.  Mollie is happy about it; me, not so much.  I like the peace of mind that the monthly CBC offers, even if it is a false sense of security.

That's it for now!  Have a great week!

It's That Time of Year Again

September is Childhood Cancer Awareness month.  
 You can tell from all the gold ribbons plastered everywhere, the corporate sponsorships, and TV specials, right?  Right.

Tragically, pediatric cancer doesn't get the attention and research funding it deserves.   And kids need adults to advocate for them and give them a voice.  Four-year-olds can't get all their buddies to join them in letter-writing campaigns and fundraising events.  It doesn't help that September is such a busy month.  Kids are just going back to school, everyone is adjusting to their new routines, and there's not much time to add anything else to the mix.  But, it is what it is.   We've got a month, let's make it worth something.

Please don't let this month go by without doing something!  What can you do?

• Make a donation to your favorite pediatric cancer research organization or charity
• Make a meal or send a gift box to a child (or family) fighting pediatric cancer or suffering the aftermath
• Donate blood
• Donate (new) toys or books to your local children's hospital
• Write to your Congressman and tell them you want to see more federally-sponsored pediatric cancer research

G2D1

The first day of school is already here?  Here's to a great second grade year!  Good luck Mollie!

P.S.  Mama promises to write a longer update soon.  So much to write, so little time!

Summer of Confidence

This summer, Mollie is making up for lost time!  She is busy mastering things that she couldn't or wouldn't attempt while on chemo: riding her bike without training wheels and learning to swim. 
She was treading water in the "deep end" at her lesson this morning! 

She is also reading chapter books, some by herself and some together with me.  So far she has finished Harry Potter and the Sorcerer's Stone, The Secret Garden, A Cricket in Times Square, and we are about halfway through with The Wind in the Willows.  

My parents were visiting last week and we all had a great time, despite the heat.  Mollie expressed interest in doing some needlework (cross stitch), so my mom picked up a kit at a craft store and taught Mollie how to get started.  Currently, she is working on making a cupcake design for Lucy.  It's a great quiet time activity that incorporates a lot of skills- manual dexterity, pattern/chart reading, counting stitches,  and following directions.
This weekend Mollie heads off to Camp Rainbow.  It is hard to believe this is her third year! Leave a comment or send an e mail if you would like her address to send her a card.

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!