All About Mollie

Merry Christmas (& Clinic Update)

2011-12-21T20:38:00.001-05:00

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!

Clinic Update

2011-09-26T23:33:00.002-04:00

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

2011-09-01T00:18:00.000-04:00

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 buy 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

2011-08-25T07:32:00.000-04:00

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

2011-07-29T12:55:00.000-04:00

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

2011-07-12T19:29:00.001-04:00

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

2011-07-11T22:12:00.001-04:00

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

2011-07-08T19:46:00.000-04:00

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!)

2011-06-30T11:43:00.001-04:00

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...

2011-06-17T08:23:00.001-04:00

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

2011-06-14T16:52:00.001-04:00

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

2011-06-08T16:41:00.000-04:00

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.

Update, Long Overdue

2011-05-22T17:33:00.002-04:00

Spring is always such a busy time and this year we have been able to enjoy it without chemo- we've been to the horse races (The Queen's Cup in Charlotte), to the aviation museum, and finally planted a few containers of herbs and flowers for Mollie and Lucy to tend.

Mollie had her monthly follow-up appointment last week and I am happy to report.... nothing! All of her counts were normal!

Still, there are little things that I wonder about. She has now had two allergic reactions to sunscreen- swelling & itchy red rash. We have tried two different types of sunscreen and only reaction only seems to happen when she gets a lot of sun AND is wearing sunscreen. With the advent of hot weather, we are trying to get to the bottom of this! For now, we are just keeping her covered with hats, glasses, longsleeves, and shade as much as possible. She never had this before chemo and I wonder if her immune system is a bit confused.

Also, she continues to have the occasional bloody nose. Dr. J. is not concerned since they are small and stop very quickly. She may have a blood vessel close to the surface and hot, dry air irritates the skin. She had this same type of bloody nose before she was diagnosed with leukemia, but never during chemo, so it bothers me a lot!

She also had her first dental appointment in a long time- the oncologist discouraged this during chemo treatment because of the possibility of introducing bacteria during cleaning or other dental work. No cavities!

That's the update for now. Mollie is thriving at her new school and generally enjoying life! Can't ask for more!

Easter Celebrations and Christmas in July

2011-04-27T17:23:00.000-04:00

We had a lovely Easter this year, out at Matt's grandparents farm in South Carolina. Activities included fishing, rambling, cow watching, visiting with family, church, and two egg hunts (carefully avoiding fire ants and poison ivy). And too much food!

I hope all of you had a lovely weekend too!

For those who are reading this blog that know children suffering from cancer (in treatment or remission), there is a wonderful lady known as The Blanket Fairy who is organizing Christmas in July to help brighten the summer for these kids. Click the link to find out more about this program and to register a child (parents only). Please pass the info along to anyone you know who may be interested!

Clinic Update

2011-04-16T06:58:00.000-04:00

Mollie's clinic visit went very well!

The best part, from Mollie's perspective, was that they gave her the choice between a finger stick and an arm stick (she chose finger stick, of course).

By all accounts Mollie looks healthy and has the bloodwork to prove it. All her numbers were right where they should be, with an ANC of over 2000.

Happy Weekend!

We're still here

2011-04-11T16:39:00.000-04:00

... but we have been the victims of microbes! Various infections and afflictions have slowed us down a bit the last two weeks. I won't bore you with the details, but with three different antibiotics (for three different individual) and numerous OTC meds, we are coming out of the fog. However, I anticipate more sneezing as allergy season has just begun.

Mollie and I had a nice little trip to Augusta for Bella's birthday at the end of March! Visiting our friends always reminds us how much we miss them, and Augusta is really beautiful this time of year (dogwoods in glorious bloom- it is no coincidence that this is when the Masters tournament is held), so it was hard to come back home!

Not much else to report at the moment. Mollie's monthly clinic visit is tomorrow so I will post another update when we get the numbers.

Courage

2011-03-25T17:16:00.000-04:00

Showing courage means being brave at something. That's what it means to me! I like courage! Don't give up!
~Mollie Carroll King

Today Mollie received the character education award for her class at the monthly school assembly. The character trait she displayed to earn the award was courage! Her fellow students voted that she should get the award and she was taken by surprise at the assembly today. These children never knew her during her cancer treatment, so clearly she's making it known that she is a brave girl! We are so proud of her!

Have a lovely spring weekend!

Egg carton daffodils and a found bird's nest bring a little spring indoors

Clinic Update & More

2011-03-24T08:37:00.001-04:00

Updated to add... NO MORE SEPTRA! Can't believe I forgot to mention that. I asked Dr. J. for a new prescription and how much longer Mollie would be taking septra/bactrim. He said 6 months. I said it had been 6 months. Well, okay then. No more pills for Mollie!!!

Goodness! More than 2 weeks since my last post... days have been busy around our house.
My parents were here visiting, which we all enjoyed. Now it is time for cleaning out wardrobes, storing the coats and winter things, and getting ready for warmer weather.

Mollie got sick this past weekend, with a fever and cough. Matt and I were both worried, but the presence of the bad cough and congestion reassured us that this was just a cold/flu and not related to leukemia. She had a clinic visit scheduled on Tuesday for her regular follow-up so we decided to wait it out rather than put her through an additional doctor visit.

As it turned out, her fever spiked to 102 while we were in the clinic. Dr. J's response? Go see the pediatrician if she's not improving in 2-3 days. Really. I was expecting he would just write her a scrip to Zithromax and be done with it. Such a different response than we would have gotten 6 months ago. Obviously, waiting it out is the better way to go, but not necessarily the easiest!

The clinic visit went really well even though Mollie was feeling puny. We had talked about how to handle the inevitable arm stick. It didn't go so well last time, so this time we decided she would close her eyes, take deep breaths, and squeeze my hand. It worked! Plus, Lucy was in the room with us telling Mollie how great she was doing! Very sweet.

Her counts were great- ANC 3200. They read them to me over the phone and I didn't have paper so I don't remember the details something like:

WBC 4.9
Hgb 10.9
Plt 175

The hemoglobin and platelet numbers are slightly lower than Mollie's usual numbers, but are well within the acceptable limits.

That's about it for now... she's getting an award at school tomorrow. Shhhh! It's a surprise! I'll post photos and a re-cap this weekend.

Birthday Girl

2011-03-07T09:52:00.002-05:00

Mollie had a lovely birthday- we celebrated all weekend!

She had been looking forward to having her best friend Bella visit from Augusta- they had a blast! They stayed up talking, playing, and watching movies until 1 am!

We celebrated with cake and a few gifts on Friday night. She was very pleased with her new pet venus fly trap (a North Carolina native plant!) and earrings!

Don't know why those little candle reflections kept showing up...

Then she chose lunch at Panera and pottery painting at a ceramics studio on Saturday.

By Sunday, her real birthday, we were all ready for rest. I got up early and picked up a bouquet of flowers and a balloon to surprise her. Matt made pancakes for breakfast and we had a slow morning. In the afternoon, we went shopping for art supplies with her new gift card and had an early dinner out (Mollie's choice).

Here's to Mollie! May she have a blessed and healthy year, full of learning, exploration, friends, family, and fun!

Time Keeps on Slippin'...

2011-03-01T18:49:00.002-05:00

... into the future!

Still in a bit of shock that Mollie is going to be 7 this Sunday. Yes! Seven!

Clinic Update

2011-02-22T21:40:00.004-05:00

We have been so busy enjoying the unseasonably warm weather, I forgot to update the blog after Mollie's clinic appointment last week! But the wind is blowing cooler weather in tonight...

Mollie had her first off-treatment echocardiogram (cardiac ultrasound). She was a little put-off by having to lay down in the hospital bed (reminiscent of the ER), but once the tech put Lady and the Tramp on the TV and turned down the lights, she was fine. The cardiologist did not find any problems and said everything looked great!

After that, we went upstairs for her regular clinic appointment with Dr. J. He said she is looking great, good color, etc. We talked a lot about nutrition: foods she should be eating (fresh fruits, veggies, whole grains, lean protein, calcium-rich foods) and foods she should avoid because of small links to cancer (anything processed, charred foods). No surprises there, but it was nice that a doctor actually brought the issue up!

The bad part of the appointment was the blood draw. Mollie wasn't prepared to have a stick in her arm (as opposed to the usual finger stick), but the order was for 2 tubes of blood and they can't get that much from a finger. It was pretty awful. She was very upset and tense; and then the nurse could not get any blood. They had to stick her other arm and even that was if-y. Mollie always wants to watch what is going on, but in this case it worked against her. Once we got her to close her eyes, she relaxed a little and the blood came flowing. After all the drama, I didn't get the complete results of her CBC! But I did call and find out her ANC was 2400.

In other news, we are all ready for winter to be over, but the hot summer temps can hold off indefinitely. Infinite spring. That would be perfect.

We have been busy taking advantage of the good weather in our local parks, including going to a "fairy house" festival. It was perfect outdoor fairy frolicking for Mollie and Lucy.

They dressed as fairies, went on a whimsical scavenger hunt, and built a little fairy house in the woods.

Hope you're having a good week!

Growth

2011-02-10T20:45:00.002-05:00

Apologies for the radio silence... I took a week off from updates and then we had problems with our internet connections.

Take away the chemo, steroids, nausea, fatigue, and missed school days... and you are left with a little girl who is shooting up like a string bean, toes busting out of her sneakers, and who reads at 3rd grade level!

Mollie has been making tremendous progress academically and physically since stopping chemo 5 months ago. Her reading tests indicate that she is reading way above grade level (which has me amazed and wondering how to keep encouraging her to progress). She is making friends, started a "fairy club" at school, and continues to love art, pretend play, and writing. She is working on a story to submit to a writing contest.

The last few weeks have been emotional for me for a number of reasons, but one is directly related to Mollie's leukemia. I read on a discussion board that COG made some changes to the treatment protocol that Mollie followed (she wasn't actually enrolled in the study because it was closed at the time she was diagnosed). Apparently, they found that in normal and low risk children, doing an additional IM (interim maintenance) was superior to following the standard treatment and they are switching all low and normal risk patients to that treatment. This is a great stride for pediatric leukemia patients! Unfortunately, Mollie didn't get this additional IM. I know it doesn't change the risk numbers we were given at the beginning of treatment, but it just leaves me feeling worried.

I haven't been able to find any documentation about these changes, but I will bring it up with Dr. J at Mollie's appointment next week. Part of me wants to just turn a blind eye to pediatric cancer research because when I read it, I worry. And I can't change the past. But, I also feel very inspired and hopeful by the progress that is being made. So I'll continue to pay attention to the studies and hope that one day, there will be a certain cure and maybe we will even be able to prevent leukemia.

Lucy

2011-01-22T08:42:00.000-05:00

She's THREE!

Happy Birthday Sweetie Pie!

Give Kids the World

2011-01-21T09:53:00.002-05:00

We were so fortunate to stay at Give Kids the World Village on Mollie's wish trip. It was absolutely the best part about the trip!

If you haven't heard of GKTW, it is a resort only available to families through wish-granting organizations (like Make-a-Wish). All of the families staying there have at least one medically-fragile child. Because of this, GKTW caters to the needs of all children- even the merry-go-round and train accommodate wheelchairs easily. It was truly amazing.

Our villa in storybook village

Enjoying the garden

A volunteer from GKTW met us at the airport, carried all of our luggage, and assisted us in picking up our rental car. We learned that for every employee at GKTW there are 30 volunteers! They are such kind people who are so eager to see the kids smile (and the parents too!).

Mayor Clayton gave the girls a personal tuck-in!

All of the amenities at GKTW are completely free of charge- the food, rides, and activities. Lucy and Mollie (and even Liam) loved the carousel! It was open before breakfast until long past dinner. We started every day with a few carousel rides on our way to breakfast! They also had a train, arcade, theatre, garden and playhouse, ice cream parlor (open for breakfast!), miniature golf course, life-size Candyland playground, water park, and magic castle with a spa for kids!

Ice cream!

There were activities in the village every morning and evening. There were some exchange students there for a few days; they taught the kids how to play with some traditional Japanese toys and wrote their names in Japanese. They spoke very little English, but they were so sweet and friendly! Every Thursday night, every week of the year, they have a big Christmas celebration at the Village. The kids loved the carriage ride, fake snow, cookie decorating, Christmas parade, and visit with Santa Claus.

Princess Mollie of Cornelius

Carriage ride- thanks to the horses, Tom and Dan

Visit with Santa Claus

Prince Liam

Mollie and Lucy walking up to the toadstool carousel

As if all that weren't enough, the also decorated our villa for Christmas, with a tree and other decorations inside and lights outside. And the volunteers brought gifts for the kids EVERY DAY!

We could have stayed on the grounds of GKTW the whole week and still had a great time! More on the rest of our trip coming...

Mayor Clayton's house

Lucy rode the carousel at least 5 times every day!

Even Liam enjoyed the merry-go-round

Lucy got her nails done in blue at the spa

Mollie and Lucy with Ms. Merry, the Mayor's wife

Mollie had clinic this week. In the words of Dr. J, "She looks great!" She has lost about 10 pounds since September, all steroid/water weight. Her counts are great-

WBC 4.2
ANC 1800
Hgb 13.3
Plt 219

She didn't have her echo this week; clinic was closed last week (due to snow) so they rescheduled her appointment. I thought they rescheduled the procedure, but they didn't. So we will wait until next month.

Snow Days

2011-01-12T23:26:00.002-05:00

We had a lovely little birthday party for Liam on Sunday! He cried at his first piece of cake because he wanted his bottle, but once he started on the cake, there was no stopping him!

Liam is wearing the vest I knit for him!

Later that night, it began to snow. And it snowed all day Monday. Then it turned to freezing rain. Schools have been closed all week, so we have been having some fun around the house: sledding, crafting, fort-building, reading, and sitting by the fire. Tomorrow is back to school for Mollie. Unfortunately, they have to make up the missed days over President's day and the MLK holiday. Boo!

Snow fun in the common area behind our house

In case you can't tell, they are sledding on my (really old) snowboard!

Not only do we not have a sled, but we don't have any snow clothes either! Lucy is wearing swim trunks over pants!

The clinics have been closed this week too, so Mollie's appointment will be rescheduled. Ever since Christmas she has been plagued with a cough/cold. We ended up taking her to urgent care (at our family doc) on Jan. 6 because she was looking and feeling puny (as they say in Augusta). She was feverish, coughing a lot, and extremely lethargic. They did a flu swab and chest x-ray and said told us they both came back negative, but that they would call when the radiologist reviewed the chest films. No antibiotics, just control the fever. The next evening we got a call from the doc that her x-rays showed a little "pneumonitis" or early pneumonia. So she started her favorite medicine, Zithromax. What a difference an antibiotic makes. She finished her last dose yesterday and feels much better!

I am still working on organizing our Disney pictures (too many!). Hopefully I'll have a couple of picture posts this weekend.

One!

2011-01-09T08:28:00.000-05:00

Happy Birthday Little Spud!

Happy New Year!

2011-01-03T20:10:00.001-05:00

The limo is here! We're going to Disney!

A winter break like no other! It has been a whirlwind of activity, travel, illness, cheer, family, and fun around here since before Christmas. I guess it is back to regularly scheduled programming now.

The Orlando trip was a blast! More details about the trip later, but we had a great, great time. The resort, Give Kids the World Village was amazing, and probably the best part of the trip. Our kids had never seen anything like DisneyWorld before, so it was a lot to take in and discover. I am still digesting it all!

Mollie spent a few days under the weather. She was sick for a day in Orlando and following Christmas she just seemed extremely tired and pale. I took her in to our pediatrician for counts. Matt and I both were worried; we thought the other shoe was about to drop. Fortunately, her counts were fine!

Christmas Eve was a little chaotic as we were all so tired and had little time to prepare (and Liam threw up on the flight home from Orlando). But Christmas day was lovely. Matt's parents and brother were staying with us and we spent a leisurely morning opening gifts. Then we spent the afternoon trying to find a restaurant for Christmas dinner (the search was much harder than anticipated). We ended up at a small farm-to-table restaurant in a historic hotel in uptown and it was fantastic! We had the entire place to ourselves and the real treat was that it started snowing!

The week after Christmas is always a favorite of mine- probably the most calm, relaxing days of the whole year. And of course, my birthday falls during that week. So maybe that's why I like it so much. We spent time around our house and then Matt's parents took Mollie and Lucy to Snow Hill (his grandparents' farm in South Carolina) and that gave us a little respite. Unfortunately, I got the stomach bug so instead of crossing items off my "to do" list, I was worshiping the porcelain goddess.

We joined them is South Carolina to ring in the new year. Now we are all recovering... and Liam took his first steps today!

I hope everyone had a lovely holiday!

Signing off for Christmas

2010-12-17T19:04:00.000-05:00

With Christmas and Mollie's Wish trip on the agenda, I am going to take a short blog break. I promise I'll be back after Christmas with some photos of all the festivities.

We got some bad news today about our house in Augusta- a pipe burst and there is major water damage. I really struggled to get through today, wondering if this was my straw (the straw that broke the camel's back). In my mind, I know things could be a lot worse (I'm thinking of families getting a devastating diagnosis or losing a precious child). This doesn't compare, but this still feels pretty bad. Thanks to my awesome husband for driving down there to see the damage in person and talking me through a big cry fest (you too, mom).

The kids are bouncing off the walls with excitement, so for now, I won't worry about money or insurance, and I vow to just be present and enjoy them.

We hope everyone enjoys the winter holidays, however you celebrate!

Full Weekend

2010-12-12T21:42:00.000-05:00

Mollie stayed home from school on Friday. She just seemed worn out and in need of some extra rest. So she slept in and spent some time watching movies and just being indoors and quiet. She still almost fell asleep at the dinner table.

Fortunately, she perked up Saturday morning and we went downtown to see Matt finish his first ever marathon! It was a beautiful (cold) day. We had a delicious lunch afterward and I got my last bit of Christmas shopping done while Matt took the girls home.

We ended the day by watching the DVD that Camp Rainbow sent from this year's camp. It was fun trying to spot Mollie and see some of the activities she did at camp (like catching huge fish with Dr. Vega).

Today we attended a Christmas party for CampCARE (similar to Camp Rainbow but here in NC). Mollie and Lucy got to confer with Santa and get their photos taken (I will post when I get it). And then Lisa, our Make-a-wish volunteer, came by with a light-up princess cake and all of our info for the DisneyWorld trip! So we had cake for dinner and pasta and salad for dessert!

Clinic Update

2010-12-09T22:57:00.001-05:00

Mollie's oncology clinic visit was quick and almost painless. She was so pleased that Jackie just did a finger stick to get blood for counts. She had second thoughts though after getting 20 drops of blood squeezed out of her finger. Dr. J thinks she is looking good. Perhaps she is getting a cold or virus because she looks a little "washed out" and has a palpable lymph node. She does have a bit of a runny nose- hopefully it won't turn into anything. Her counts are all within expected ranges:

Hgb       12.5
WBC      4.6
ANC       2400
   Plt        174

She goes back in a month for regular follow up and will have an echo at that time to monitor her heart function. She will need monitoring (probably every 3 years) for the rest of her life because she received cyclophosphamide (Cytoxan, an anthracycline) in 2008 during Delayed Intensification. This drug can have cardio-toxic effects; the biggest concern with her heart would be during pregnancy because of increased cardiac demand. So we will just keep on top of the monitoring and make sure she is aware of the issue.

After her oncology appointment, we headed to Augusta for her surgery follow-up. We had a long, mostly sleepless night in a local hotel, followed by a rough morning (teething baby & cranky 2-year old). I just prayed that the appointment would go well... and it did! Dr. Howell (or as Lucy says, Dr. Owl) was quite proud of his work, noting how Mollie's earrings looked perfectly even and her scar was quite nice. He put new steri-strips over the scar; when they fall off, she's good to go. And he didn't bill our insurance for the earrings- I don't want to know how much he would charge for that! Quite a gift from Dr. Howell!

After that appointment, we headed over to MCG oncology clinic to visit with the staff. We saw Tracey, Nikki, Beth, Pam, and Kate. I was a bit emotional- I miss the familiarity of that clinic and the bonds we've made with all of Mollie's caregivers! After a few minutes of visiting, Mollie started to get irritated and teary and wanted to leave right away. I sensed there was something she wanted to tell me in private, so we quickly said our good-byes and walked down the hall. When prodded, Mollie told me she was sad because she didn't get to see Ms. Kym. I said, "Let's walk back and ask Ms. Tracey if she knows where Kym is." So we did, but she had not seen her. Just as we were turning around to leave, Ms. Kym came walking down the hall! It was a little miracle that lifted Mollie's spirit! Kym gave the girls hugs, some winter craft projects, and a stealth mission for DisneyWorld.

After that, we stopped by my old lab to pick up some things from my desk (another emotional roller coaster) and then headed back home. Finally!

Mollie seems worn out (she had Spanish club after school and then her class holiday performance tonight) so she might be staying home tomorrow to rest and recover a bit. Don't want to overdo it!

On the agenda

2010-12-07T10:08:00.002-05:00

Mollie loved this little, warm bookshop in Blowing Rock, NC

This week Mollie has TWO clinic appointments- her regular oncology follow up (for counts) at Levine and then her surgery follow up in Augusta.

She's growing into quite a young lady!

We got a bonus doctor visit yesterday; Lucy was begrudgingly holding my hand as we were walking through the store, angry because I wouldn't buy her a chocolate milk. She did that "thing" that toddlers do- just kind of buckled her knees- and I jerked up on her arm so she wouldn't end up on the floor. As I did that, I felt something give. Lucy seemed fine for a few minutes and then started crying. She was in real pain, holding her arm, and wouldn't use it. Lucy has a high tolerance for pain, so off to the doctor we went to make sure it wasn't broken. They did a couple of X-rays and determined it was "probably" not broken, but Dr. T was concerned enough that he set us up to see the orthopedist today. We think she may have had a dislocation at her elbow that was reduced when the X-ray techs manipulated her arm around. Have I mentioned how great it is to have our doctor around the corner from our house? We can walk there in 5 minutes! And they have a lab and x-ray on site. Since she's feeling better and using the arm, we don't have to follow- up.... woo hoo!

Liam, participating in his favorite activity: eating hamburgers!

Story time with grandma (Momo), Blowing Rock, NC

Playing in the leaves at Reedy Creek Park

Speaking of places we can walk to in 5 minutes, we got our Christmas tree on Saturday. There is a little tree lot set up at the park area behind our house, so we walked over, picked one out, and Matt carried it home! We put it up Saturday evening and it looks great! That might be the earliest we've ever had a tree. Usually it is Dec 20 before we start thinking about it... and then we leave it up forever. It is cold here, so we are spending a lot of time inside enjoying the tree!

A Good Cry

2010-12-02T16:09:00.001-05:00

Just a few hours after I finished uploading photos for my post yesterday, Mollie arrived home from school. I suggested we take her bandages off so I could check her incision (her follow up appointment is not until next week). She was very reticent - I thought she was worried about the pain from the adhesive. I got out the detachol (brilliant solvent for removing adhesive bandages) and she let me put it on the tegaderm (the outer bandage). It peeled off easily along with one of the steri-stips (inner bandages) from the smaller incision. The smaller scar looked great and I walked her into the bathroom to show her in the mirror. The larger incision was still covered, but Mollie would barely look. She just hung her head and started sobbing.

I held her until she calmed down and asked her what was wrong. "Why did this happen to me? Why did I have to have leukemia, surgery, and all the medicine and hospitals and blood draws?" It is certainly not the first time she, or any of us, have asked this question. My reply, as always, was to tell her that I wished it had never happened to her, that we are doing everything possible to make sure it doesn't come back, and to reassure her that it was not her fault. We talked a little bit about biology, God, and doctors.

She calmed down. She asked me to cover the incision with a band aid. That did the trick.

Later, she took a much-needed shower, but we left the steri strips and band aid in place.

I think she needed a good cry. She feels much better about everything today. A good cry and a hot shower work wonders.

Thankful!

2010-12-01T14:14:00.004-05:00

I hope everyone had a lovely Thanksgiving and holiday weekend! We sure had a lot to be thankful for this year!

As we noted briefly, Mollie's surgery on Nov. 17th was a success!

Arriving at pre-op clinic @ MCG

We arrived at MCG a little after 10 and Mollie had been NPO (no food) since dinner the previous evening. We met with Dr. Howell (the surgeon) and anaesthesia in the pre-op clinic. We didn't really know what to expect in terms of recovery time, whether she would be admitted, etc. As the surgeon explained, removing the port is a lot easier than inserting it, but there are still complications that can arise. The port itself can adhere to the heart wall, it can fracture, or just be difficult to remove. The outcomes are generally positive, but could result in a permanent piece of plastic left in the chest or could require the assistance of a pediatric cardiologist in a second surgery. Dr. Howell didn't seem too concerned, commenting that Mollie wouldn't know the difference; she would just wake up with her ears pierced! But he also seemed determined to get it out in one piece (and was visibly irritated that it didn't always happen that way). My favorite part of that whole conversation was when Dr. H whipped out the pen to mark the spot he was going to pierce Mollie's ears!

Ears marked and ready to go.

So, after picking out a toy from the dino-store (just for kids undergoing procedures), Mollie got a dose of Versed and was wheeled into the OR. We grabbed lunch and waited. The surgery lasted about 3 hours, including prep and recovery time. They had to make an additional incision to get the port out, but it came out in one piece and Mollie got to keep it as a souvenir (or medal of honor). She was agitated when she woke up because she still had an IV in her arm and was hungry!! We were very touched that so many of the OR staff came by to say hello and wish Mollie luck- I know they are always happy to see children getting their ports out.

The nurse cleaning the betadine off of Mollie's ears after the procedure.

The word from Dr. Howell is that he had to make one additional incision to free the port, but he got it out in one piece. She does not have sutures because he closed the wounds with steri strips. Apparently that makes the scar heal more neatly. The downside is that Mollie hasn't been able to take a real bath for 2 weeks because she had to leave the bandage on.

After the surgery, we stayed in a hotel in Augusta so Mollie wouldn't have to endure the 3-hour drive home the same day. For pain, she had received and injection of fentanyl in addition to the propofol used for the procedure and requested additional pain meds (morphine) in recovery. She was pretty wobbly on her feet for a few hours and threw up once (after scarfing down a bag of chips, poor kiddo). Other than the huge bandage, you would not have known she was just in surgery. She perked right up when I told her we were going to Stevi B's for pizza with her best pal, Bella!

Bella, Mollie, and Lucy had a great time together eating pizza and playing arcade games. They did NOT want to leave, but it was a school night for Bella and Mollie needed to get some rest. A visit with good friends was a lovely way to end the day!

My parents came out the day after the procedure. It was a good distraction for Mollie! She went back to school for Thanksgiving week and brought her port for the coolest show and tell ever!

The port. In close-up, you can see all the holes left from each time it was accessed. Let me know if you want to see...

Then we headed up to the Blue Ridge mountains for Thanksgiving. Matt's brother and his wife joined us for the holiday and we all had a wonderful (and cold!) time.

It has now been two weeks since the surgery and Mollie hasn't had any problems. She only felt a little pain the day following the procedure. Her ears have healed up quickly and have not caused her any problems. I guess that's what you get for having a top pediatric surgeon pierce your ears!!

Rocking out in the park a few days post surgery.

Notice the earrings!

I am so relieved that it all went well. Words cannot express how thankful I am for everyone who has helped us and Mollie get to this point!

It's out!

2010-11-17T21:14:00.002-05:00

Posted by Matt King:

Hi everyone, we will have a proper update with photos shortly, but wanted all to know that Mollie's surgery (and ear piercing!) went well today. She was given a little morphine for the discomfort but is otherwise fine and excited about some post-operation pizza. Aside from Liam's birth in January this is probably one of the best days we have had in a long time.

Thanks for reading!

Clinic Update and other highlights from early November

2010-11-14T08:45:00.003-05:00

Some of you know from Facebook that Mollie's application for secondary insurance through the state of North Carolina was declined. Boo! Georgia has a much more generous program (called the Katie Beckett waiver) and I am so glad that we were there when she was diagnosed. Definitely a low point, but we're moving on.

Highlights from the previous week include:

The weather
We are having wonderful fall temperatures, beautiful skies, and brilliant foliage. We pulled out our jackets to wear in the morning, but we shed them by the afternoon. It is such a welcome relief after a sweltering summer! We have enjoyed leaf-peeping in the parks near our house as well as the enchanting botanical gardens at UNCC.

The fall harvest festival (almost right in our backyard)
Lucy and Mollie enjoyed riding Freckles the pony and petting the goat, goose, chickens, rabbit, and piglet from a local farm.

Football
Matt and Mollie went to see the Panthers play the Saints last Sunday. The Panthers are terrible, but Mollie doesn't care! She is their biggest cheerleader! She composed numerous cheers for the team in her notebook and demonstrated them for us. She is one cheerleader that I appreciate!

Matt took Lucy to see Davidson play football yesterday while Mollie went to a birthday party. She was very brave and gave a high five to the mascot!

Clinic (Yes, clinic).
Mollie had clinic on Tuesday and it went very smoothly. Her ANC is 4400!! and all other counts and blood chemistry are normal. She is growing taller and slimmer and is feeling good. We got some tips for handling her dry skin and scalp. Dr. J. and I discussed doing a neuropsych evaluation (recommended for anyone who receives multiple doses of intrathecal chemo- probably will do it about a year from now) and scheduling Mollie's echocardiogram to monitor her heart function (recommended for those who have received adriamycin- done annually). We go back in a month for another check-up and the port removal surgery is ON for this week!

We hope you all have a wonderful week ahead! Please keep Mollie in your thoughts & prayers on ~~Tuesday~~ WEDNESDAY as she undergoes her surgery. Tuesday is on my mind because I have to get everything ready by then!

2 Month-versary

2010-11-03T17:53:00.005-04:00

Wishing a very happy birthday to my Dad!

Two weeks ago, when I went to the pharmacy to pick up a new prescription for Septra (the antibiotic that Mollie still takes), I brought the remainder of Mollie's chemo drugs, the 6 MP, methotrexate, and dexamethasone, for disposal. This was a big step for me. Those vials had been sitting out, waiting for me to take care of them, for weeks. Since mid- August, actually. I couldn't bring myself to do it. There was that nagging thought: What if she relapses? These drugs are expensive and we might need them. So I ignored the thought and I ignored the vials.

Finally, I screwed up enough courage and unceremoniously dropped them off at the pharmacy. Done. Freed up some counter space.

It has been exactly 2 months since the end of Mollie's treatment. This is the longest she has been without chemo since her diagnosis, and she is feeling good. The skin irritation is improving. She is happy as a lark most of the time and is settling in to our new life. Occasionally, she wakes us up in middle of the night asking if we forgot her medicine. For the most part, I don't think twice about her medicine before going to bed; I am so over that. However, the downside of that is that we are always forgetting the Septra. Giving a medication just 3 days a week is so much more cumbersome than giving it every day because there is no routine.

Incidentally, I also scheduled her port removal surgery today. November 17. Twenty-nine months after her port was placed. Two years ago, when Mollie was going through some of her harshest chemo and was bald and feeling crappy, I promised that she could get her ears pierced when she finished treatment. Dr. Howell agreed to pierce her ears while she is under anesthesia so she won't even have to feel the pain. Score!

She is looking forward to the surgery, having now experienced a regular blood draw from her arm. We all are looking forward to putting that chapter behind us. I want to be happy about it. I am happy about it, but I'm also scared to be happy. Make sense?

Happy Halloween!

2010-10-31T22:07:00.000-04:00

This was a fun-filled weekend! Mollie didn't have school on Friday, so we spent the day getting ready for Halloween. We went to the pumpkin patch, cut out bats to decorate our door, and looked online for pumpkin carving ideas.

Yesterday we carved pumpkins and roasted pumpkin seeds.

Today, Halloween, we went downtown for a Dia de los Muertos celebration- the girls got their faces painted, decorated sugar skulls, and made crepe paper flowers. Mollie soaked it all in! Lucy is feeling a little under the weather, but she enjoyed herself too. Of course they were very excited for trick-or-treating tonight. Matt took them around the neighborhood after a quick dinner and they came back with lots of treats! Then it was straight to bed because it is back to school tomorrow...

Cancer hardly crossed our minds this weekend! Medical bills from Mollie's most recent hospital stay arriving in the mail were the only reminder. This Halloween was infinitely more enjoyable than last year, when Mollie was in the hospital with H1N1 & pneumonia. A real-life miracle. Hallelujah!

Hope your weekend was lovely!

Friends

2010-10-23T21:11:00.005-04:00

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

2010-10-15T17:55:00.001-04:00

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

2010-10-07T21:19:00.000-04:00

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

2010-09-30T17:17:00.002-04:00

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

2010-09-28T10:09:00.003-04:00

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

2010-09-21T22:47:00.000-04:00

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...

2010-09-20T22:16:00.001-04:00

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!

Chemo-free Weekend

2010-09-13T20:37:00.002-04:00

Off chemo and out of the hospital, Mollie is so full of energy! We took full advantage of her good mood and energy this weekend.

Friday night we had dinner @ the Pita Pit and spent the evening walking around Uptown. We just took in the sights, sounds, and smells of the BBQ and blues festival that was going on.

The next day we went letterboxing in a local park. This activity really appeals to Mollie because she likes following the clues and finding a surprise. We walked ~2.5 miles and then played at the playground after. We topped the night off with pizza at Brooklyn South (a nod to NYC).

Yesterday we hiked the Big Rocks trail @ Morrow Mtn. state park (~2.5 miles). The weather was exquisite and we enjoyed being out in nature. We spotted lots of interesting moss, mushrooms, and a dung beetle rolling a ball of dung uphill. We took some time to learn a little about dung beetle biology when we got home. The leaves are just starting to turn and fall there and we kept thinking the falling leaves were butterflies flitting by.

Mollie enjoyed it all and was ready to head back to school today! She had a great day and is ready for more.

I am a bit of an emotional mess myself. I'm not good with change (who is?) and we have had SO MUCH! Nothing in our life is the same as it was last year at this time. New baby, new city, school, home, doctors, etc. I feel depleted. This battle with leukemia (and all the other life-altering events that have occurred the last 2-ish years) has emptied our emotional, spiritual, financial, and physical reserves. And then some.

I don't want to end this post on a low note, so let me just mention that Mollie and I are going to see the broadway production of Mary Poppins this week! We got tickets on a whim after walking by the theater Friday night. Looking forward to it!

Clinic Update

2010-09-09T21:15:00.000-04:00

Mollie had her first OT clinic visit today- woo hoo! She was quite nervous about the unfamiliar clinic, but it all went well. Basically, she will be seen once a month for the next year for counts and a physical. We are to watch for any signs of recurrence like bruising, palor, malaise, and swollen lymph nodes. She can't have any immunizations for the first 6 months OT and no live attenuated vaccines (like MMR) for the first 12 months OT. As long as she still has her port in, we need to call clinic for a fever (because she could have an infection of that central line and could become septic VERY quickly). She will also stay on septra for about 6 months.

The whole appointment took an hour at most. It was surreal to sit there and have a matter of fact conversation about Mollie being off treatment. Dr. J was good about answering questions and told me that eventually Mollie will be seen in their long term follow-up clinic that deals with late effects (neuropsych and physical) of chemo.

Mollie's counts were good:
Hgb 12.4
Plt 465
WBC 2.6
ANC 856

The ANC is a bit low, probably due to the lingering effects of this virus. So far all the tests they ran in the hospital have come back negative (so it was not an adenovirus or parvovirus and not likely to be fungal or bacterial); still waiting for the skin biopsy results. We'll probably never know what caused it....

A Girl and Her Trophy

2010-09-07T21:02:00.002-04:00

We didn't have the celebration we had planned for Mollie's last day of treatment, but the day was momentous and memorable none the less! On Saturday morning, we presented Lucy and Mollie with trophies for being so courageous over the past 2 and a half years (810 days). Mollie has been wanting a trophy for a while now and she couldn't believe she got a real trophy!

I still don't know what my feelings are about Mollie going off treatment. I know that I am scared of recurrence. And side effects from the chemo, but mostly of recurrence. I think about all the other families that have been on this journey. For some, the treatment ended and they never looked back. Other children have had countless health problems OT. The most painful stories are of those children that relapsed and didn't make it. They died from this damn cancer after fighting it for 2+ years! Scared is about all I can feel right now.

If you haven't been there, you just can't imagine what it feels like to sit waiting to find out if your child has relapsed. Matt and I hardly talked to each other- I think we were each in our own little bubbles of worry, just trying to keep it together. My mind was jumping from wondering how other parents felt when they were in our seats to 'how am I going to summon the strength to face this beast again, with a worse prognosis.' But... we got great news and I know how fortunate we are. I am trying to focus on that. I know Mollie feels some trepidation about going off treatment. I don't think she fully realizes that the cancer can come back, but she just feels strange not taking medicine every night. I can only hope that soon the nightly meds will be a fuzzy memory as we focus on living well, not worrying.

On that train of thought, we spent the rest of the weekend enjoying being out of the hospital. My parents stayed until yesterday, so we did some shopping, walked around the UNCC botanical garden, dined at various local establishments, and took a little walk around uptown. Today, we went letterboxing (if you don't know what that is, look it up and try it in your area). We found a letterbox at a park that is just around the corner from our house. Mollie and Lucy thought we were on a treasure hunt and had a grand time! Liam got his second tooth so he was just enjoying the ride. Mollie walked a lot and is feeling good! Her gums are still a little swollen and the rash is just about faded away. We will follow up with the oncs here on Thursday.

from HOME!

2010-09-04T14:39:00.000-04:00

Yesterday, the oncologist said Mollie's bone marrow looked like it was about to send out a bunch of neutrophils and he was right on. Yesterday's ANC = 0; today's ANC = 1000! She has not had a fever for more than 24 hours, so they discharged her.

We could not be happier. She still has a rash and swollen gums, but we are to follow up with clinic next week and keep checking for fever @ home. She is so happy to be home and we feel like a family again!

In other news, Liam got his first tooth last night, our friends Lauren and Justin welcomed their new son to the world yesterday morning, the weather here is gorgeous, and it is a long weekend. Mollie picked a good day to leave the hospital!

More later...

from the hospital, day 6

2010-09-03T17:10:00.002-04:00

I won't keep you waiting- no evidence of leukemia in Mollie's bone marrow or csf specimens!

She had her procedures this afternoon- a lumbar puncture, bone marrow aspirate, skin biopsy (of the rash), nasal swab, and got her port access needle replaced. She got some morphine for the pain associated with the bma and biopsy, so hopefully she will remain comfortable tonight.

We still don't know what is making her sick- there is increasing evidence that it is some type of virus. Matt and I are breathing a huge sigh of relief, so thankful that there is no recurrence of the leukemia. I hope we never have to go through that again! No family should have to. The fear, anxiety, and worry is just awful.

Settling in for another night in patient (well, Matt and Mollie will be staying here). I did not think that this would be my post for Mollie's last day of treatment... but I am so, so glad that the news today is positive.

day 5 update

2010-09-02T21:11:00.001-04:00

I'm headed to bed soon so I can meet my parents at the airport early tomorrow morning but I wanted to quickly update.

Mollie spiked a fever around mid-day and was feeling bad while the fever was up, but once it came down (with tylenol) she perked right up. We did lots of crafts, painted her nails, watched Tinkerbell, washed her hair (the part of it that she would let me), and kept our minds off the hospital surroundings. Mollie, Lucy, and I did the white blood cell ANC cheer before I headed for home tonight and apparently Mollie is drawing pictures of white blood cells right now. We believe that attitude is very important and we are all visualizing the white blood cell factory in Mollie's marrow.

I realized I got quite a few phone calls from friends and family today and I apologize for not answering: the reception is really bad in that room so I will try to get back to you in the next few days.

Please keep praying for a boost in Mollie's ANC!

from the hospital, day 5

2010-09-02T11:50:00.000-04:00

Well, I am more optimistic today. I can't say why because nothing really has changed, but I just feel better about everything. We got Mollie's counts- her white blood cells (and neutrophils) are about the same as yesterday- low. Her platelet count has come up a bit and hemoglobin is holding.

We had a consult with infectious diseases a little while ago. They agree that this is probably viral, but are adding an extra antibiotic to cover the (extremely unlikely) possibility of rocky mountain spotted fever (!)

I think her rash looks a little better. Maybe it's just optimism, but it doesn't look as red to me. Mollie is in a little better mood and isn't tethered to the IV constantly so she's getting up, walking around, and just finding different places to sit in this little hospital room. Sitting in bed for days on end is not good for anybody!

I brought some more beads, crafts, knitting, and Tinkerbell the movie and we plan to spend the day crafting and not thinking about cancer.

I will keep updating here as we know more; we are still on for a spinal/bma tomorrow afternoon unless counts come up in the morning. They are running some tests to check for different viruses and we should get those results back today or tomorrow. If they identify what this is, they will cancel the spinal and wait until she is better to do her off treatment assessment. I'm praying so hard for those counts to come up!!

day 4 update: tired and terrified

2010-09-01T21:21:00.001-04:00

After I posted today, I got Mollie ready for bed and helped her brush her teeth. Her gums were bleeding a little, probably because her platelet counts are low and she hasn't brushed for a few days. She just lost it, and so did I. She said she is so tired of all the "ugly" things (bleeding gums, rash, etc.) that keep happening to her in the hospital. It is beyond hard to see your child suffering and to be helpless to stop it. I can't stand it!

Then, to top it all off, she spiked a fever of 102.6 just as I was leaving. Honestly, I am terrified. I'm taking a deep breath and I will try to get a good night's sleep. We could use some prayers, good luck, and patience. Tomorrow is a new day (hopefully one filled with a positive ANC).

From the hospital, day 4

2010-09-01T17:49:00.000-04:00

The only good news is that her white blood cells (overall) and her platelets are up slightly. It looks like we are here for a long stay.

Mollie has not had a fever since yesterday, but she still has the itchy rash. The lab lost Mollie's blood sample this morning so we didn't get her counts until just now: ANC is 0. She has a spinal tap and bone marrow aspirate scheduled for Friday if her counts don't show any sign of recovery by then. The doc said he expects to see counts start to recover after two weeks of being off chemo; if they don't, he likes to do an LP & bma to rule out a recurrence of the leukemia. We NEED those counts to come up.

I don't think she is relapsing because her counts always take a long time to recover when they bottom out, but I admit I am worried. I am trying not to dwell on it because it is what it is- worrying won't help.

Mollie was in pretty good spirits today- she is into beading (it keeps her hands busy and not scratching her rash) and crafts as usual. Today she painted a birdhouse and made some little fuzzy creatures from a kit I had. And she got a good laugh when we made Liam sit on a whoopie cushion!!

Getting her to eat is a struggle and I still haven't succeeded in bathing her. I'm feeling down; this is not at all what I had planned for this week. We were supposed to go to Augusta for Mollie's blood draw and then celebrate the end of treatment by going on a camping trip this weekend. The only thing that matters, though, is that Mollie beats this. So we press on and hope that she has a relaxing night while her bone marrow cranks out neutrophils. I brought a lavender sachet for her pillow to give her sweet dreams (thanks for the tip, Michelle).

From the hospital, day 3

2010-08-31T21:56:00.003-04:00

Mollie seemed a little bit better today. Her counts are about the same as yesterday (negligible ANC) and her rash is still present. It seems like it is moving downward- not so bad on her face today, but worse on her tummy and back.

They decided to give her IVIG because her immunoglobulin levels are low. IVIG is pooled IgG that has been extracted from the plasma of over 1000 blood donors (and is very, very expensive- Mollie's dose probably cost more than $6000). Mollie has had it before (when she had a suspected staph infection in Dec. 2008) and she had a very severe reaction (dropping oxygen sats and increased blood pressure). It was extremely scary (as in, yelling for the doctors because Mollie was turning blue), so Matt and I were really nervous about today. But it all went well. Mollie was premedicated with Benadryl, Tylenol, and Solu-Medrol, and her nurse, Kaitlin, was very cautious with the pump rate and diligent about checking for signs of an allergic reaction. She developed a slight fever during the second step, but it resolved quickly without any additional meds. She remained afebrile all day and the steroid (Solu-Medrol) seemed to help with some of the itching and redness of the rash.

Mollie has little bouts of feeling well, but the meds and just being in the hospital are getting her down. She is not eating much. She reminds me of an injured animal because she is maintaining this hunched over posture to protect her port. She doesn't want anyone to come near it and she didn't relax at all today. She is doing a great job complying with the nurses (who are great) and telling us how she feels. She just wants to go home and I don't blame her!

Today we were lucky that Mollie's kindergarten teacher from last year (Mrs. S) watched Lucy all day!! Lucy really needed some one on one attention and I know she had a great time. Thank you Mrs. S! Also, Mollie's new teacher, Ms. C came to visit her in the hospital and brought a card signed by the whole class! Mollie was pretty shy when she was there, but she was looking forward to her visit all day and really enjoyed looking at the card after she left. Thanks Ms. C!

The last bit of news, and the best, is that Mollie's wish was approved. We are going to Disneyworld! You may remember she wished for a playhouse a long time ago. When we found out we were moving, we asked them to put a hold on that wish because we were not sure if that would be the best idea. After talking things over with Mollie, explaining that a fancy playhouse just won't fit in our yard right now, and looking at pictures of Orlando, Mollie got pretty excited about Disneyworld and the Give Kids the World resort. We are going in December so it will be all decorated for Christmas!

Thanks for all the comments- it helps us get through, it really does. Hearing from other cancer parents who know how much this sucks, and our other friends and family cheering us on. When I leave the hospital without Mollie and feeling down, I think about the families who just received a devastating diagnosis today, or worse yet, lost their son or daughter today, and I am thankful for what we have. Tomorrow is the first day of National Childhood Cancer Awareness Month. I urge you to spread the word and make a donation to an organization that specifically supports pediatric cancer research or treatment, such as the ones listed in the sidebar.

From the hospital, day 2

2010-08-30T22:39:00.000-04:00

We are still here. Mollie has been spiking fevers on and off since yesterday and has developed a rash over her face and trunk. The oncologist (Dr. M) thinks it is viral, but Mollie is getting broad spectrum antibiotic coverage just in case. There isn't much else to report; her ANC is still very, very low and she's feeling pretty lousy overall. She is tired and bored; they are testing her for a virus so she has to be in 'isolation' until the tests come back. We completely understand (they don't want to expose all the other immune compromised patients on the floor to what she has), but the contact precautions are annoying. No playroom. Gowns and masks for staff coming into the room.

The hospital here is similar to MCG. The staff are friendly and responsive. The hem/onc unit has been recently renovated so they have some cool state of the art equipment in the patient rooms, like flat screen TVs and barcode readers for the hospital bracelets. Funny how the little annoying things, like the IV beeping incessantly and the slow pharmacy, are the same.

I'm off to get a little sleep, hoping that Mollie's bone marrow cranks out a bunch of baby neutrophils tonight.

F & N

2010-08-29T21:42:00.003-04:00

Fever and neutropenia, that is. They should call it effin' N.

Mollie is in the hospital. She has a very low ANC (~30; remember, normal is >1500) and a very high fever (103). We consulted with the oncologist on call in Augusta and he said to take her to the children's hospital in Charlotte. I had hoped it would be an in and out trip, but that wasn't in the cards. Levine Children's Hospital is every bit as good as MCG, but we just are not familiar with their staff and protocols. The port access did not go well (it never does in the ER) and she had to get stuck twice. But child life (Shannon) was awesome! She brought Mollie a movie, stuffed animal, and blanket and got her talking about her new Scooby Doo silly bands. I am so, so proud of Mollie. Scared as she was, she didn't shed a tear. My heart sunk when I heard that her white blood cell count was only 0.5 because I knew that earned her an admission.

She is feeling pretty low right now and my heart is breaking for her. She will miss her second week at her new school. And she was designated the star student for this week! She had her poster and show and tell all ready to go. I will head back to the hospital in the morning with a bunch of stuff to keep her busy. Today she was interested in doing math in the ER!!

I am feeling insecure because these aren't the doctors I know and they don't know Mollie. However, deep down I don't care who is treating her; I just want her fever to come down and ANC to go up, up, up!!

Grade 1, Day 1

2010-08-25T21:43:00.001-04:00

Yesterday was the last day of steroids (yay!) and also the last day of summer (boo!). School started today. I am struggling, but Mollie did amazingly well. New school. New bus procedures. She knows no one. Yet, she got off the bus smiling and telling me she had a great day! She is my hero!

I can't stop comparing things to how they were in Augusta (bad, I know, but I just can't help it). We had such a wonderful staff at the school and Mr. B, the bus driver, was one in a million. It's just different here, new, and I don't know what to expect. There are other circumstances making back to school harder for me this year. Mollie isn't a brand new kindergartner any more, so they don't coddle them nearly as much. And, aside from her teacher and the school nurse, no one knows about the leukemia. You can't tell from looking at her and we decided we didn't need to send home a letter to her classmates this year. If she chooses to talk about it, she can. We may ask her teacher to say something to the kids about her absences (at least once per month for clinic), but probably not. It is hard for me to meet and talk to people without immediately telling them about the leukemia- it has been such a big part of my life.

Mostly, I am wondering where my little girl went. Now she's a big first grader!

Mollie and Liam on Mollie's first day of First Grade

Soaking in the sprinkler on the last weekend before school starts.

Steroids, Day 3

2010-08-22T11:51:00.000-04:00

We are 50% of the way through this last round of steroids. Mollie is having a tough time because this is the highest dose she has been on since the beginning of treatment. There are lots of sibling fights and hurt feelings. It makes me so glad that Lucy was too young to "get it" for most of Mollie's treatment. This morning she was crying over how Mollie was treating her; I doubt she will remember it and I am so glad it will be over soon.

Some photos from Friday:

Clinic Update

2010-08-20T23:47:00.001-04:00

We are back home in Charlotte. Sigh. It has been a long, emotional day.

We headed out at 6 AM to make the morning appointment in Augusta. When we were about 45 minutes away, Matt said he felt tired; we pulled over so I could drive. During this exchange, Matt got into some ferocious fire-ants and got stung on his feet. Other than being painful and annoying, we didn't really think too much about it and went on our merry way. About 10 minutes later he said that he was really itchy. I looked over and he was bright red, swollen face, and covered in hives! We pulled into a gas station to get an antihistamine, but I was very concerned about this allergic reaction and wanted to get to the hospital as soon as possible.

We made it and Matt was pretty miserable for an hour or so, but had no difficulty breathing. Pam and Kate, the Peds Hem/Onc nurses kept a close eye on him. Needless to say, we are going to get him an epi-pen STAT! Kind of a nerve-wracking start to our big day!

Clinic went well though. Ms. Kym and Beth (the nurse practitioner) surprised Mollie and Lucy by attacking them with silly string and giving them a huge Littlest Pet Shop playset to celebrate Mollie's last treatment. They were thrilled! The clinic has been renovated over the last few months and they just moved back into the new space this week so we got to check it out. The individual TVs in the infusion chairs are genius- kept the kids busy while waiting for counts.

Mollie's ANC is low (700 by machine- probably <500 manually), but her hemoglobin and platelets are normal. This is probably just a response to the increased dose of chemo she has been taking the last few months and probably also explains why some of her skin lesions have been slow to heal. Beth put her on Keflex and hopefully that will help things clear up. Since her ANC is low, they want us to hold chemo for 2 weeks. Well, 2 weeks from today is Sept. 3.... so, no more chemo!!! She will be officially off treatment (OT) on Sept. 4, but we have to go in to clinic on the 3rd for counts. She still has the 5 days of steroids and she will be on the weekly Bactrim for the foreseeable future, but the nightly chemo is really done. I don't think the enormity has hit me yet.

Dr. A did Mollie's lumbar puncture and it was uneventful; I went upstairs for a brief visit with Carson- he is out of the ICU and back on the 5th floor! Mollie got a nice anesthesia-induced nap in the recovery room and then we went to Stevi B's for pizza. Afterwards, we went over to Isabella's house so the girls could get a couple hours of playtime- they miss each other so much!

I couldn't help thinking about Mollie's diagnosis on the long drive home. The first night she stayed in the hospital, after her diagnosis, Matt stayed with her. I went home to be with Lucy and I just remember sitting in Mollie's bedroom, wondering if she would ever sleep in there again. We are so, so lucky. I couldn't have imagined this day, back then.

This Week

2010-08-18T00:04:00.000-04:00

Über busy. Among other things, we're still trying to organize/unpack, learn about our new home/neighborhood, get Mollie ready for school. To top it off, Mollie has her last spinal tap (for real) on Friday.

Matt was out of town for a long weekend camping with his friends, so I held down the fort and tried to keep the kids busy with some summer activities here in North Carolina. We went gold panning at Reed Gold mine (site of the first documented discovery of gold in the U.S. for all you Californians) and Mollie found 2 tiny little gold flakes. I was more excited than she was- she thought she would find big nuggets! And Lucy was just excited to get her hands in the muddy water.

We also had a lovely lunch with Mollie's kindergarten teacher at Ikea (the kids love that place) and visited Matt's grandparents in South Carolina. It has been good to spend a little time with people we know since moving to a new place can be very isolating.

Mollie is doing well. She has had some skin issues (reminiscent of last summer)- a few rashes, blisters, and sunburn/abrasions on the backs of her hands. We have been very diligent about sunscreen and she seems to have a reaction to it no matter which brand we use. The 6-MP and Bactrim that she takes daily can both cause sun-sensitivity so those are probably contributing. In any case, you can tell she and Lucy have been outdoors enjoying the summer. They have the scrapes and band-aids to prove it!

Please keep our friend Carson in your thoughts and prayers. He has been in the ICU for 9 days suffering from rare toxic side effects from chemotherapy- liver toxicity and fluid in his lungs. His mom is doing the best she can and my heart really goes out to her. It is so, so hard to see your child suffer and not be able to do anything about it. You just want so badly to take control, to know how long you're going to be there, to know the "plan", and to make it all better. Mollie has not been in the PICU, but I can imagine it is many times harder than being in the hem/onc unit. I do know that nothing will really help except for Carson getting better.

To the Point

2010-08-11T16:55:00.000-04:00

Check out this short and pointed article in Working Mother.

Every single sentence in this article is something I have thought or experienced.

I live with it every day, but I don't often dwell on the reality that my child has cancer. My child has cancer! It intrudes on our daily lives in the form of anxiety & worry, chemo side effects, the need to always have back-up plans and carry the Huber needle, Emla cream, and thermometer. But mostly, it takes time away from doing normal things. How many hours have we spent in clinic waiting rooms, the ER, or the hem/onc unit?

I look forward to September 3 (Mollie's chemo end date) with trepidation, survivor's guilt, and a feeling that by celebrating, we are tempting fate. I plan to use these feelings to help do something about childhood cancer. I haven't decided what, but I'm mulling it over. You see, one of the most tragic aspects of pediatric cancer, is that the people who most want to advocate for these little patients, are also the most overburdened and exhausted.

We're Back

2010-08-09T09:29:00.000-04:00

Just a quick note to say we're back from California. We had a great time visiting family and friends and all the travels went well. Now we are back in our new house with quite a bit of unpacking and organizing to do. We are all jet-lagged except the 2-year old...figures! It will be a while before we're back to normal around here. More details from our trip when my mom sends me the photos!

One of our clinic friends, Carson, was admitted to the ICU last night after 5 days in the hospital. The docs don't have a definitive answer, but they think that Carson is experiencing liver disease as a side effect of the chemotherapy. We are praying that he makes a steady recovery.

Deep Breath

2010-07-22T10:56:00.000-04:00

I can't convey in words how full the last week has been. The move has gone pretty well so far; the movers did an excellent job and took much better care of our belongings than we would have. Our new place is about the same square footage as our house (fingers crossed for it to sell quickly), but a different layout, so I am having to rethink how to arrange everything. But, we are settling in. My aunt Sally is here visiting, helping with kids & unpacking, and providing good company. We are making progress unpacking boxes (and boy are there a lot of boxes to unpack). It is wonderful to have the market just a short walk away (less than 2 blocks) and the pool just 3 blocks away.

We went back to Augusta on Sunday and stayed overnight with our good friends for Mollie's appointment on Monday. Mollie and Lucy had a great time with Isabella- it was the perfect way to prepare for a week of steroids. Mollie received her monthly chemo and her counts were perfect again: ANC is 1800! She is tolerating the steroids pretty well this week. The evenings are rough because she is tired and hungry; she wants to eat, but she can't make up her mind about what she wants.

Last night Lucy spiked a fever of 103.7. She was feverish all night and into this morning, but it seems like she is recovering now. I don't handle fevers very well any more- I want a CBC. Stat! Now we just have to hope that the rest of us, especially Mollie and Liam, don't come down with the same thing because we are headed out for vacation on Saturday.

This Home

2010-07-13T06:00:00.026-04:00

Happy Birthday to Mom and Auntie Sally!

I am going to miss our house. This house, with all it's annoying quirks, funky wiring, and stained carpet, has been our home for the past 5 years. Inside these walls, we have hatched plans, celebrated accomplishments, and conquered fears. This is where Mollie found comfort after being discharged from the hospital and I slammed doors to vent my anger at her cancer diagnosis. We brought both Liam and Lucy home to this house when they were just one day old. Mollie learned to read here and lost her first tooth. Lucy took her first steps and said her first words. We have experienced so much of the joy, laughter, courage, anger, hurt, healing, and love that makes us a family in this house. It has been our home base.

Okay, now the tears are really flowing. It's not just the house. It's the community and the connections and memories we have here. When we bought this house, we didn't intend to stay here forever, but that doesn't make leaving any easier. I like the townhouse we are renting and I am eager for our family to be together every night, rather than have Matt be away several nights per week. But I am still sad.

Maybe I would feel differently if we were going to make a profit (or break even) on the sale of this house. Or maybe not, but the movers are coming either way. I'm putting on a smile for my kids. I've let them see me cry too, but they need the reassurance that this is okay.

We're going on vacation at the end of the month (just a week after they deliver all our stuff). My aunt is coming out to help with the unpacking (I can't thank her enough- she is the best godmother ever!!) and help me with the kids on the airplane because Matt won't be able to join us for a week. It is really chaotic (our life always is, it seems), but I think the vacation will help us take our minds off the move and relax. Hopefully we will return rejuvenated and ready for the beginning of first grade!, the end of treatment!, and some more unpacking, organizing, and adjusting to our new home.

Pandemonium

2010-07-12T13:31:00.002-04:00

Just a quick update because things are pretty wild around here....

Mollie made it home from camp on Saturday. She had a great time- even better than last year! We really appreciate all of the donations of time and money that make this camp possible. I am amazed at how well it is put together and how much all the kids look forward to it and enjoy their week at camp.

I also enrolled Mollie in the Christmas in July program through The Blanket Fairy. A wonderful volunteer "adopted" our family and sent a surprise package of goodies, including handmade tutus and hairbows for the girls. They loved all the goodies and played with them all afternoon yesterday.

The focus for this week is the move- the packers are coming tomorrow! I am getting more frenzied by the minute. The kids want to play games and do projects and I simply can't do that while getting ready for the movers. If I give them specific tasks (take all the magnets off the fridge and put them in this box), they are very good at doing it. But a lot of the work is simply organizing. Right now they are watching The Sound of Music, so I better take advantage of the relative quiet!

Cast Off

2010-07-09T19:14:00.001-04:00

I miss Mollie so much and can't wait to hear about all her adventures when she comes home tomorrow.

It was an adventurous week for us too-- Lucy got her cast removed on Weds. It was much worse than when they put it on. She was scared and uncomfortable and cried, screamed, or whined for a solid 4 hours. She still walks like she has a broken leg- partly from the physical pain due to it being immobilized for almost 4 weeks, but the rest is psychological. She's moving around pretty well and really, really enjoying baths and showers.

The movers are coming to pack on Tuesday! To say we aren't ready is an understatement, but it is really happening. Yikes!

Off to Camp

2010-07-05T23:36:00.000-04:00

By now, Mollie is at camp!

The camp is about a 2 hour bus ride from Augusta. Everyone meets up at the hospital to check in, hand over their medications, and get on the bus. Some kids are giddy with excitement and others are really shy and reluctant to leave their parents. Mollie was sort of indifferent when we first arrived; she recognized her buddy Zackary, but he was in a funk because of his cabin assignment (but he did have cool blue hair!).

But when Katie arrived, Mollie lit up! Katie and Mollie were in the same cabin last year (and went to the same elementary school), so it was a great reunion. After chatting a bit, the two went in search of other girls in their cabin. I overheard them introduce themselves to one little girl by saying, "And what do you have? A port? I had seven shots- 3 in my legs and 2 in each arm. " And so on and so on. That sums up why this camp is so important.

The drop off is also a mini reunion for parents. Next year I need to remember to bring some folding chairs and cool drinks!

Independence

2010-07-04T22:00:00.009-04:00

Happy 4th of July!

We ran errands, stopped for delicious all-American burgers @ Five Guys, and lit sparklers at home. A modest nod to our nation's birthday was all that we could muster this year.

Mollie gets her own independence this week- she leaves for Camp Rainbow tomorrow! She is a little worried about missing us while she is gone. We have sent her lots of letters and packed photos of all of us for her to look at if she feels homesick. I think she'll be fine, but she has needed some extra reassurance. She's one year older, more self-aware, and we haven't been spending much time around the hospital lately (thank goodness). Plus we have the upcoming move (scheduled for the week after camp) and all the uncertainty that comes with it, so she is dealing with a lot emotionally. I hope camp goes off without a hitch because she really deserves that special experience!

This I Believe

2010-07-03T05:00:00.001-04:00

I heard this essay on The Bob Edwards Show on NPR the other day and I really identified with it. It reminds me of many of the women in my life, and I can see Mollie growing up to express similar thoughts one day.

Here is the text of the essay (click the link above to listen)

To Preserve A Benevolent Attitude

Verona Wylie Slater - Penn Valley, Pennsylvania

As heard on The Bob Edwards Show, June 25, 2010

My early life was spent in Presbyterian parsonages where I learned a great deal about the “thou shalt nots” of this world. In those days [my father's] parishioners’ problems were often brought to the minister for settlement. He was supposed to be their spiritual advisor, marriage counselor, economic stabilizer, and psychiatrist. Sometimes, father referred to conferences with his flock, saying he had been wrestling with men’s souls. In these mysterious matches I thought of God as a giant referee who spoke through father.

My brothers and I held long conversations about what might be true or false in Christian teachings. One evening during a thunder storm, my eldest brother was inspired to make an unholy experiment. He stood on a sloping rock, which jutted out into the lake near our summer home. Holding his face upward, he defied the Almighty to strike him with a bolt of lightening. The storm was loud and close. The skies opened with a terrifying flash, but the bolt flew across the dark waters a mile away. We felt relieved, foolish, and very insignificant. I have felt unimportant many times since that night and remembered with a smile a bolt of lightning which scorned the Parson’s children.

It took many years to recover from the idea that God was a figure of personal vengeance. Now I think of God as a spirit of goodness, reflected in sane human beings everywhere. In much the same way I look through the pantry shelves to see what is needed for dinner, I have frequently taken inventory of my thoughts searching for a simple philosophy by which I might live. My philosophy embraces three things I would like to be as a woman: wise, gentle, and brave. To be truly wise would take more than one lifetime, perhaps. But achievable wisdom implies the use and enjoyment of my five senses. I can observe. I can read and gather at least a partial understanding of the world. I can learn by listening to others. I can enjoy music. I can taste what is sweet or bitter. I am warned by the smell of smoke and pleased by the fragrance of flowers. With my fingers I might stroke the silken hair on the head of a child. But these same nerve ends keep my fingers from the fire.

Gentleness is the sort of kindness which accumulates with wisdom. It is the big watchword in my book. It is so easy to become an opinionated monster after 40. With age, I want to preserve a benevolent attitude. Children need tenderness to combat their natural savagery and to comfort them in distress. A soothing manner is an important ingredient in any formula dealing with men. It lightens the tensions that shorten men’s lives. A gentle approach toward other women is a vital necessity if I hope to accomplish anything in group projects and if I wish to have friends.

The real value of gentleness is lost if it is not fortified with bravery. When I am afraid, I am paralyzed and ashamed. Women who show a quiet courage in grief and disaster fill me with admiration. I have to evaluate and control fear. In order to reason clearly, I must be brave. Rather than a monument to my own failings, I want my children to be a credit to the society in which they live. All the wisdom I glean, all the gentleness I can maintain, all the courage I can command, I want for them.

Verona Wylie Slater was a housewife and mother to three children in Penn Valley, Penn. She was the daughter of famed New York minister Edmund Melville Wylie, and the sister of writers Philip and Max Wylie.

"A Mighty Fine Day"

2010-07-02T08:56:00.000-04:00

When Mollie got in bed last night, she told us, " I know tomorrow is going to be another mighty fine day!" She had a great day yesterday. Matt's parents are visiting and she and Lucy got to play with grandma Janet ALL DAY. They played playdough, spy (with their new walkie talkies), went for a walk at the nature center, and played some more.

In the evening, Michelle and I took Mollie and Isabella out for dinner so we could all enjoy some time together. We went back to our house after dinner for some extended conversation and playing. We are sure going to miss the J family when we move in a few weeks!

Mollie is back to her normal self now that the steroids have worn off. It is wonderful to see her playing and taking advantage of all the free time she has. She has been creating and doing a lot of imaginary play! We can't wait for Lucy to get her cast off so she can join in a little more.

I have to agree with Mollie.... it was a mighty fine day!

Offline

2010-06-27T12:28:00.002-04:00

My computer is sick... so I'll be offline (hopefully) temporarily :(

Clinic Update

2010-06-24T21:52:00.000-04:00

Mollie's clinic visit went well today-we went in the afternoon and there was nobody else there! Her ANC is 1100 (perfect) and other counts were great. We forgot to put the Emla cream on her port to numb it up, but she let me rub a little cream in before they accessed her and it was no problem. She is such a champ!

Even though everything went smoothly, Mollie was a little cranky and teary. I still haven't figured out why; my best guess is that she was tired. She has started her steroid pulse so I'm expecting more tears and frustration (for both of us!) over the next few days.

Oh, I also learned that her last spinal tap wasn't her final spinal tap like we originally thought. I had assumed that since her "end of chemo" date is Sept. 3 that this chemo cycle, which ends ~Aug. 20, would be her last cycle. But the protocol calls for her to continue with the next cycle and then just stop chemo mid cycle on the "end date". It seems kind of arbitrary to me, but it means that Mollie will have a spinal tap in late August and will stop chemo on Sept. 3. No problem- Mollie seems glad she gets to see her nurses in the OR one more time.

She got to hang out with Ms. Kym today at clinic and is starting to get excited for Camp Rainbow. If you want to send her a letter or package at camp, make sure you get it in the mail next week so it makes it there in time for camp!

In Full Swing

2010-06-23T12:33:00.002-04:00

Summer has arrived around here- sweltering heat, big bugs, mosquitos, weeds. Not my favorite season here in Augusta and with Lucy in her cast, it is even worse. We are staying indoors for the most part because when we go outside she wants to play in the sandbox. Sand and casts are not a good combo!

Mollie is enjoying her second week at summer day camp and is in pretty good spirits over all. She loves seeing her old buddies from pre-K! Tomorrow she has her monthly IV chemo/steroid pulse- I made her appointment in the afternoon so she can participate in the craft activity at camp in the morning.

Lucy is now walking on her cast pretty well (and climbing the stairs when I'm not looking!). She's got spunk! She knows how to manipulate and she's not letting any broken leg slow her down.

Liam is sweet as can be and growing so quickly! I am in search of new carseats for him and Lucy. They are both about to outgrow their seats; unfortunately, Lucy's seat is also expired, so I can't use it for Liam. Anyone tried the Graco Nautilus seat? Or any other recommendations for a seat for Lucy?

We are chugging along...

2 Years

2010-06-17T05:00:00.001-04:00

Two years ago today, Mollie was diagnosed with pre-B cell acute lymphoblastic leukemia. It was the lowest, scariest day Matt and I had ever experienced. When we got the diagnosis, we were shocked. In tears. Afraid that we were going to lose our baby. We agreed that we would allow ourselves to grieve that one day, but the next day we were going forward, doing our best to adjust to the new normal.

I can hardly remember what life was like before leukemia entered the picture. Lucy was an infant, almost exactly the same age Liam is now. Mollie was a toddler, learning to adjust to being a big sister. Matt and I were learning how to parent two children simultaneously and contemplating future plans/career paths.

June 17, 2008 was kind of a re-birth for our whole family. Everything changed. Walking Mollie down the kicking-ass-on-cancer path became our focus. At times, it has been scary, stressful, frustrating, physically demanding, and emotionally draining. It has taxed all of our resources. But it has also brought us closer together. We've seen how fragile and tenuous life is. And what a blessing!

In the 2 years since her re-birthday, Mollie has blossomed into such a wonderful big kid ! She is so caring and concerned for others. She's bubbling with energy and thrilled that she can now express herself in writing and can read EVERYTHING around her. Like me, she doesn't remember life before leukemia.

I don't often use the term 'survivor' when referring to Mollie, but for this day I will. I don't generally think about our lives being that different from 'regular' families without pediatric cancer because if I go there, I start feeling sorry for myself. But today I will think about our struggles and our strengths. It has been 2 years of some really tough stuff, but I still feel lucky. And hopeful for the future.

Quick Update

2010-06-16T18:13:00.003-04:00

Lucy got her cast on today... and she will be able to walk on it (hence the cute little shoe). And we go back in 3 weeks for an X-ray to see how it is healing.

Oh, and Mollie has developed a cough so I am praying that doesn't turn into anything!!

This Week

2010-06-15T19:53:00.003-04:00

The last 2 days have been a major challenge. There's the emotional aspect of seeing my child in pain and knowing that she can't enjoy some fun summer activities. And then there is the physical exhaustion. The 2.5 year old who doesn't understand why she can't walk, doesn't feel good, and is completely fickle is really something to contend with (she: I want the pink one, no the green one, no the pink one. me: OK, here. she: NO! THE GREEN ONE! I SAID!!!). Add an exclusively nursing 5 month old and a 5 year old on summer break, and it is a nightmare. Matt had to be in Charlotte today, so I was by myself. Michelle sent her babysitter over for a few hours and that was a tremendous relief (thank you, Michelle).

Mollie has been going to day camp this week at her old preschool/child care. This is both a blessing and a curse. It is nice to have one less child in the house for part of the day, but then I don't have her help in keeping Lucy occupied. Mollie is loving day camp- she was very excited to see some of her old buddies from pre-K, especially Colby Grace!

The rest of this ~~week~~ ~~month~~ summer is chock-full of milestones and events. Tomorrow, Lucy goes to ortho clinic (my friend Carrie is going to help me with the logistics since Matt will still be in CLT) and it is our 9th wedding anniversary! Thursday is the 2-year anniversary of Mollie's diagnosis!! Then, on the weekend Uncle Sam is coming for a visit, we will celebrate Father's Day, and Matt's dad (Grandpa Charlie) is flying out to stay with us for a few weeks. Mollie gets her monthly chemo next Thursday and then we will start getting her ready for Camp Rainbow! She leaves July 5. Our move is on hold until we have a better idea of Lucy's treatment plan, but we'll fit that in some time this summer!

That reminds me, if anyone wants to send her a letter or package while she is at camp, please e mail me for the address. Mail should be sent the week prior to camp to make sure she gets it while she is there. Last year she loved all the cool mail she got!

I am exhausted just typing this...

Broken

2010-06-13T21:23:00.007-04:00

Our dryer.
Lucy's leg.
My spirit.

Well, not really on the spirit part, but it does break my heart to see my bold, energetic little 2 year old laid up in horrible pain.

Eating her 'popicle' after getting her temporary cast.

Our weekend started off on Saturday with the discovery that our dryer was spinning, but not heating. That led to some DIY attempts at dryer repair, to no avail. Man, was I peeved about that. The dryer is less than 2 years old and was a replacement for a dryer that died before it was 2 years old. Talk about bad luck!! The repairman is coming tomorrow....

We salvaged the day with a trip to the lake for some afternoon cooling off. Mollie, Lucy, and Bella had a blast playing in the sand. I was impressed that they spent a long time building sandcastles with some little boys who spoke only Spanish. I think 'play' might be a universal language. We topped off the evening with pizza and a sleepover.

This morning, Bella's mom came to pick her up and invited Mollie and Lucy over to play for a while. While they were jumping on the trampoline, Lucy tried to spin around and started crying when she landed. She wouldn't calm down and we could tell she was really in pain. Matt thought she should go to the ER (good call, Matt. I would have waited until the urgent care clinic opened and taken her there), so we headed down to MCG. As it turns out, she fractured her tibia. She is so tough! She cried and was clingy in the ER, but not the kind of cries that I would have expected with a broken leg. It was interesting how honest she was with the doctors and nurses: she screamed and cried when they touched either leg, but she was very clear about which one hurt and which did not. She is in a temporary cast until we can go to the orthopedic clinic on Weds. I should have more details then, but it looks like she will probably be immobile for the next 3-4 weeks. I will certainly have some questions to ask in regards to "why" because leukemia is [always] on my mind.

It is so awful to see Lucy in pain and I am heartbroken that she has to go through this! She already has it tough with an older sister with leukemia and an infant brother, now she has to deal with this. At least she's getting plenty of love and attention. Mollie has been really great, playing with her and keeping her occupied all afternoon. I am going to be winging it the next few weeks. This puts the brakes on potty training, the move, swimming & summer activities, at least for the near term.

Luby Doo, we love you! And we hope you start feeling better soon!

Mid-cycle count check

2010-06-10T17:38:00.003-04:00

Mollie had clinic today to check her blood cell counts. They increased her chemo dosage to 125% last time so we had to return for counts after 2 weeks to see how well she tolerated the new dosage.

Numbers are perfect:
WBC: 1500
Hgb: 11
Plt: 228
ANC: 1200

We saw Ethan in clinic- he was the LLS honored hero at the same time as Mollie last year. He was at the clinic for his 5 years off treatment check up! Wow. He was diagnosed in 5th grade and he just completed his first year at Ga Tech. Love those happy endings!! Go Ethan!

We have been busy enjoying summer around here- playing in the sandbox, splashing in the wading pool, going to the park and library, eating ice cream, catching fireflies, and staying up late. My dad headed back home today and we are really going to miss him!

Things That Were Good About Today

2010-06-05T22:50:00.002-04:00

- Mollie & Lucy chipping in to help clean up
- having some potential buyers look at our house
- making progress on the bathroom (downstairs bathroom now)
- Mollie and Daisy dressing up in old wedding dresses and veils (thanks Jen/Uncle Robert/Sam)
- barbecuing with our whole family +my dad +Sam (delicious!)
- Lucy dining al fresco (au naturel)
- chasing fireflies

Tomorrow (June 6) is National Cancer Survivors' Day. I think we'll have cupcakes to celebrate.

Just Keep Swimming

2010-06-01T21:57:00.002-04:00

Mollie had her last day of steroids yesterday and is doing just fine. The increased dose made the effects of the steroids a little stronger this time, but as long as we kept her busy and full of sandwiches from Panera, she was happy. It helped a lot to have my dad here and my brother in law, Uncle Sam. We went to Greenjackets game to see fireworks and ended up leaving early because it rained so much and Mollie was getting grouchy. On Sunday, we had a nice barbecue with our friends at Clarks Hill reservoir. It poured for a little while, but we did get to enjoy a little sun and spending time together.

This week it is just chipping away at the chore list. Mollie got a little play time with Isabella and Nadira today, but she is still feeling the effects of the steroids so she mostly wanted to stay close to me. Hopefully tomorrow she'll feel back to her normal self and I'm hoping the weather will cooperate.

We signed up for the library's summer reading program and family story time at the library. Mollie is quite the reader these days and reads every sign we see on the road. It is quite the challenge to get in enough quiet reading time with Liam in the mix. I might have to institute a few minutes of DEAR (Drop Everything And Read) each day for Mollie and Lucy.

Clinic Update

2010-05-28T16:10:00.004-04:00

Mollie showing her port, already accessed and taped up

Mollie's LP went smoothly yesterday! It was a long day- we didn't leave the hospital until 3 PM and didn't get home until 5 because we went out for pizza. Mollie was so great- she hardly complained at all (remember, she was fasting all that time) and was sweet as could be when she woke up from the procedure. According to her treatment protocol, this was her last LP (for IT methotrexate). She also got IV vincristine. This starts her last 84-day 'round' of chemo (I feel so ambivalent about this).

Her counts remained high (ANC = 2400); because they have been above 2000 for 3 months in a row, she will now take an increased chemo dose (125%) and go back in two weeks to have counts checked. I will feel much more at ease if we see the counts dipping in two weeks. The steroid dose went up too and we can really tell. It seems like just a few minutes after her first dose her brain was going a mile a minute! She is napping right now, but when she's awake we have to keep her busy or she gets really grumpy.

We saw Zackary in clinic- he had Mollie running around and playing Candyland, a great distraction for her! It was great to see Carrie- now that Zackary is done with treatment, we don't see them as often. Sadly, we also saw another family in clinic that had just found out their son had relapsed with neuroblastoma after 18 months with no evidence of disease. We really feel for them and pray for Gabe's full recovery.

cr- - (rhymes with sap)

2010-05-24T19:37:00.005-04:00

We forgot Mollie's appointment today. I thought it was next Monday and didn't bother to double check. I feel awful because it was a spinal tap appointment (her last one!). Medically, it doesn't make any difference when she has the LP, as long as it is this week, but I really do feel terrible for forgetting. Since the office was closed by the time we realized, we have to call first thing in the morning and see if we should bring her in tomorrow or schedule for later this week. Ugh.

We still have a million other things going on (still no official move date Nicola). I'm really stressed about moving, selling our house, etc. We are going to have to move twice: into a rental house until our house sells and then we will purchase a house. This weighs heavily. I have never been stretched so thin in my entire life. I don't know how we are going to make this move happen; I keep hoping the stars will align and things will just fall into place.

The good news is that Mollie and Lucy had a good first official day of summer vacation. They played in the pool, helped me do some painting, made a fort out of a big box we had, and ate pizza for dinner. My dad is here helping with the kids and I am really thankful for a little help!

Update: Mollie will go for her spinal tap on Thursday. Now I just have to remember to NOT give her methotrexate tonight (she it getting IT MTX during her LP on Thurs. so she doesn't get the oral MTX that week).

Fish Sitting

2010-05-24T09:50:00.004-04:00

We are taking care of our neighbors' fish while they are at Disneyworld (Jealous!), and Mollie and Lucy are in love. They can't wait to feed Little Tommy every day. You would think they got a puppy or kitten to listen to them talk to him, but he is just a red betta fish. We might consider getting a betta of our own after Little Tommy goes home.

We had a great weekend. My dad arrived and has been helping keep the kids entertained while Matt and I tackle projects around the house. Isabella's family took Mollie strawberry picking with them on Saturday. We are now enjoying the fruits of their labor- a huge basket of strawberries! We have plan to make some fresh strawberry ice cream tomorrow and we have already enjoyed them plain, in salad, and in smoothies.

The girls spent most of the day yesterday playing in our backyard pool (a tiny baby pool on the deck, but they love it!). We think Liam is busy working on a tooth, but he enjoyed sticking his feet in the pool too. Mollie seems to be over her cough/cold and is not complaining of headaches any more.

This will be the first week of summer vacation- we plan to start the library summer reading program, make ice cream, and enjoy the nice weather. Mollie wants to shout hello to Mr. Morgan, her PE teacher. She misses him already!

School's Out

2010-05-21T10:45:00.002-04:00

Waiting for the bus on the last day of school

It is so hard for me to believe this school year over! I can remember how nervous I felt in the weeks leading up to Mollie's first day of kindergarten. There are so many people who have made this year special- Mr. B the bus driver, Mrs. Swenson and Mrs. Partridge, Mollie's teachers, Michelle for running Girl Scouts, plus the school nurse, secretary, and the parents in Mollie's class.

My sweet little pre-schooler has turned into a toothless, shoe-tying, adding and subtracting reader who is ready for first grade! Watch out world!

We are really going to miss Stevens Creek; it will be hard for any other school to measure up.

Cancer Club

2010-05-19T10:08:00.001-04:00

Our bathroom is done and I am trying to get our last 2 projects finished: house painting and yard work. Any volunteers? I am having all sorts of mixed emotions right now. I miss my husband when he stays up in Charlotte. I really don't want to move, but it is time to stop prolonging the inevitable and just get on with it now.

Yesterday I met with 3 other cancer moms and their kids at a local park (not clinic!) to hang out. This was not a formal support group (we don't have one here), just a meeting of friends. It was so nice to be among kindred spirits for the whole afternoon. Even though we all come from different backgrounds and have different families and lifestyles, we are all in the same club. They get it. We don't have to explain to each other.

Our conversations drifted from how much fast food we eat while in the hospital to long term fears to sillybands. It helps to know that other moms have days where they just. can't. do. anything. Except cry. They also wonder why this happened to their child, are interested in environmental explanations (drinking water, air, organic foods), and wish that they had more help & more money.

School is winding down, my dad is coming to help out for a few weeks, and hopefully we will make some forward progress in the next few months. We really need the real estate fairies to help us out!!

18 Innings

2010-05-18T21:23:00.006-04:00

Beth (oncology NP) thinks Mollie's headaches are her sinuses, so we're signed up for another 7 days of antibiotics. I hope this clears everything up: Mollie has not had headaches for the last 2 days and I want them to stay gone!

I forgot to mention in my post yesterday that we went to a Greenjackets game on Sunday (our local minor league baseball team). It was Liam's first baseball game and it was quite an introduction to baseball: a scoreless game for 18 innings. 18!! Our neighbors came too and the girls (Mollie, Isabella, and Lucy) had a great time until the 15th, when Isabella and family left. We had to work on keeping Mollie happy for another 3 innings, but we all made it through the whole game and got to run the bases afterward.

Last Week of Kindergarten

2010-05-17T07:35:00.001-04:00

We had a good trip to Charlotte over the weekend- I think we've found a house/school district and now we can actually move forward with our move (take the next steps). It is much easier to be a first-time home buyer, I think. I am impressed at how well behaved Mollie and Lucy were while we looked at house after house.

Mollie's cough is still present and she also told me she has been having headaches. She's been fuzzy about the details, but they seem to come on suddenly and only last for a few minutes and they are in her temples. I hope it is sinus headache, but I have notified the oncologists and will follow up today with them.

Mollie starts her last week of school today! She is in such a great mood- I hope she has a terrific week!

Quick Update

2010-05-11T23:39:00.004-04:00

Mollie's ANC is was 2700. Good for fighting infections, but higher than the target ANC (~1500). If it is still above 1500 at the next clinic visit, they will increase her chemo dose for her next (and last) 84-day cycle.

Mollie is giving a presentation at school tomorrow on "Coins from foreign countries." She's been practicing for a few days. I like that they are already working on public speaking skills in kindergarten and I hope she doesn't get too nervous.

Liam, Lucy and I goofing around with the webcam today

Unplanned Clinic Visit

2010-05-10T14:45:00.004-04:00

Mollie woke up not feeling well this morning, but no fever. She has had a cough for a little over a week and it is sounding "wetter." We went in to clinic and, as a precaution, they took a chest X-ray. According to Beth (the NP), her lungs look a little fuzzy, but there are no signs of any serious infection. Just to be on the safe side, they are giving her antibiotics for a week and we will bring her back in if things don't clear up. Her counts are fine (no ANC yet, but her WBC is 3300).

It was a long clinic visit because we went in later than usual; this left the docs waiting for labs and results at lunchtime (when, of course, everyone is on break). Since we were stuck there, we ate at McDonalds (it's in the Childrens Medical Center so we just popped down there after the X-ray). Do I think it's crazy that there is a McDonalds in a hospital for children? You bet, but it is cheap, fast, and most kids like it. Mollie likes the fruit and walnut salad. It consists of a cup of vanilla yogurt, a cup of sliced apples and grapes, and a handful of walnuts. It is a healthy, kid-friendly choice, but it is not on the kids menu. No kids meal, no toy. They said she could have the toy for $1.80. No way. Not happening. I have principles to uphold! But... poor Mollie!! I will be writing a letter to both the CMC & McDonalds. Shouldn't they be rewarding (or at least not punishing) kids for making good food choices? And no child comes to the hospital for the fun of it- just give them the toy! [I am stepping down off my soapbox now.]

Here's the weekend report:

Saturday was full of calamities that included a potty training accident, Lucy almost breaking Matt's nose, and a workman falling through the ceiling (he's fine), but we topped it off nicely with a lovely evening barbecue with Michelle, Marv, and Bella. Marv and Michelle have a trampoline and I think we need to get one- Lucy loved it!!

Mother's Day was quiet; Matt and the kids made delicious blueberry pancakes for breakfast and we spent the day at home doing crafts, barbecuing, and hanging out.

Happy Mother's Day

2010-05-08T13:16:00.005-04:00

"God could not be everywhere and therefore he made mothers." -- Jewish proverb

Wishing a happy mother's day to all the mothers in my life and a special thank you to everyone who has supported motherhood and helped me be a good mother.

Under Construction

2010-05-04T21:51:00.004-04:00

We are having a bathroom renovated before we sell our house, so things are torn up around here. I will be (or at least I hope I will be) glad when it's finished!!

I apologize for the lack of updates lately. I am feeling very unsettled and it is hard to congeal my thoughts into coherent posts. I feel like we are living in limbo- we know that we are moving, but we haven't nailed down the specific dates, neighborhoods, schools, etc. In addition, we're trying to get our house ready to sell. I know I've said it before, but I really miss having our families close by during times like these. Don't get me wrong- I'm just going with the flow and not getting too stressed about it. I've had moments, but I'm too busy to worry too much!!

Mollie doesn't seem to mind everything that's going on- bathroom reno, potty training Lucy, and numerous other projects and tasks. She is full of energy and creativity. She is eating well. She has shot up like a beanstalk so I'm glad it is spring and she can wear shorts and skirts- her pants are certainly too short to wear. She does have a cough (so does Liam). A cold? Or allergies. Or both. It is not very severe and she seems to be fighting it off just fine.

I can't convey how thankful I am for these days. Just normal [busy] days punctuated by pills at night and the occasional clinic visit. I am so glad to be concerned about home renovations and meal planning instead of hospital procedures, blood counts, and fevers.

Good Week (on Steroids!)

2010-05-02T08:55:00.005-04:00

This week seemed to fly by! Mollie was on steroids until Friday, but she sure didn't act like it. She was a little tired and I picked her up early from school twice, but she managed to go to nature club and her class field trip to a regional park. Actually, yesterday, the day after she finished her steroid pulse, was the most difficult. It was also hotter and much more humid than the rest of the week.

I had the opportunity to tell our story (Mollie's story) on Friday at a Walmart Associates meeting. Walmart is the largest local sponsor of the Children's Miracle Network and they kicked off their balloon campaign yesterday, May 1. Even though we live with cancer every day, it is always hard to tell the story of Mollie's diagnosis and how much time she has spent sick and in the hospital.

Yesterday, we went to the zoo and botanical gardens- it was a bit crowded and we didn't get to enjoy it as much as I would have liked, but I think the girls had fun. Every time we go, I end up thinking we should just skip the zoo and stay in the garden all afternoon.

Right now Mollie is busy doing a foam sticker mosaic (thanks Arn and Catherine) and we'll spend the day catching up with chores and getting ready for the week ahead.

Clinic Update

2010-04-26T19:52:00.002-04:00

Mollie's chemo went great today. The morning was hectic, but once we got to the clinic, things went smoothly. Mollie was ecstatic to see Miss Kym and talk about camp!! The theme this year is "Over the Rainbow." Mollie's counts were great (ANC 2900) and she was very relaxed for the procedures. Ms. Kat, the art lady, arrived just as we were getting ready to leave.... so we stayed for an art project (paper strip sculptures). On our way out, we walked around the reflecting pool so Mollie could admire the beautiful water lilies.

She was in a great mood all afternoon, ate a good dinner, and played with Lucy afterwards. We'll take it! Now they are "camping out" on the floor of their room, sleeping on handmade quilts from my great aunt Nancy.

Wrapping it up

2010-04-25T11:55:00.003-04:00

Well, we are wrapping up a great visit from my parents and another month of chemo. Mollie starts a new round tomorrow, with IV vincristine and 5 days of steroids. She is looking vibrant and feeling good; I hate to see that all change with the first steroid pill she swallows.

Here's a look into how we handle the medicines:

Matt is wearing gloves while he preps Mollie's medicine; this photo shows all the pills she takes
in one week (not including zantac/prilosec and zofran for side effects).

Matt and I have worked out a system for keeping track of everything chemo-related. Every week we prepare Mollie's medications for the week ahead and keep them in a pillbox with AM & PM slots. All of these medicines are manufactured in dosages for adults, so we have to cut lots of pills in half. The dosages and medications are different for every day of the week, so preparing them ahead of time saves time and cuts down on errors. It also helps us plan ahead for when we need to get refills and new prescriptions.

When we give her the medications, we note the time and the dosage in a daytimer planner. We also use the planner to make special notes of any pains/side effects and clinic & hospital visits. This way, we have our own record of all of Mollie's medical care. Plus, whenever we travel or need to visit the clinic or ER, we can just grab the "chemo kit" and we have all the medicine, records, a Huber needle for port access, and a thermometer.

I don't know how other families handle this aspect of the treatment (and I'm interested if anyone wants to chime in!). It is a tremendous responsibility. I wonder how many kids actually get all the correct doses of medicine?? It would be so easy to forget, give the wrong medicine, or give the wrong dose. And what if you forget to fill the prescription and you're out of refills at 9 PM? We have had only one mistake that I can think of (although we have forgotten the evening meds and not remembered until the wee hours of the morning). Unless I am completely exhausted, I can't fall asleep without double checking that I gave Mollie her chemo that night.

Enjoying spring

2010-04-20T10:09:00.002-04:00

Haven't posted in over a week! I guess we've just been busy enjoying the spring weather. Mollie feels good (knocking on wood) and we went up to Charlotte this weekend to poke around and look at neighborhoods.

My parents are here visiting this week so Lucy and Mollie are extra happy (Liam is too, but he doesn't express it quite the same way).

Mollie wants to start her own store to sell things she makes, so I'm thinking about how to do that. Any ideas?

Spring Break

2010-04-13T08:23:00.005-04:00

After a rough start, Mollie had a lovely spring break. She attended an art camp in Aiken, SC for 5 afternoons. She did some gorgeous artwork and had a good time. She did a great job adapting to the new environment and it was a positive experience for her. The theme was 'beach bound,' so the projects were all in wonderful bright colors. Here is a small sampling:

The weather was great (except for the pollen- it was the worst I've ever witnessed) so we also had a few picnics and frolics in the park. Mollie and Isabella spent almost the entire weekend playing outdoors at our house or her house. They said they wanted the weekend to last forever! It is so bittersweet for me since we're going to be moving- it really pains me that those two won't be able to play together whenever the mood strikes.

School has started back up just fine for Mollie and Lucy. Mollie is eating well, full of energy, and feeling great. Lucy & Liam are feeling a little under the weather with coughs and runny noses. The weather continues to be fantastic; I hope everyone feels better soon so we can enjoy it.

Feeling Better

2010-04-06T21:43:00.004-04:00

She's not angry in this photo... she's 'posing'

Mollie is feeling much better. She still has a hefty cough, but she has much more energy and a better appetite than she's had for the last week.

We went in to clinic on Monday- counts were good across the board (ANC 4300) and no fever since Sunday morning. After clinic, it was off to art camp!

I'm so proud of Mollie for letting me drop her off at the art program without any tears or clinging. She seems to be enjoying herself. I'm not sure what art projects they are doing, but she's been coming home with lots of colors on her clothes, fingers, and arms, so she must be having fun!

Exhausted Easter

2010-04-04T12:48:00.006-04:00

The last few days feel like a whirlwind. Honestly, I'm truly thankful to have my whole family at home on this Easter Sunday, but I also feel let down that we're not having a proper celebration.

To recap the last few days...

Weds. night I took Mollie to the ER for her GI issues and she was discharged with instructions to be observant and keep her hydrated. Matt was up in Charlotte for work and his parents were staying with us. He was supposed to come home Thursday night and we would all leave to spend Easter with his grandparents and uncles in South Carolina on Friday. Matt called on his way home Thursday after work... the car had broken down. He was able to get it running again, but didn't get home until late and we were all feeling stressed. I spent Friday morning packing up all the Easter outfits and supplies and Matt worked on the car a little. Mollie lost one of her front teeth while eating a bagel! In the afternoon, we left for South Carolina, even though Mollie still wasn't feeling 100%.

I can't emphasize enough how difficult it is to deal with situations like this. Mollie badly wanted to go see her G.G. for Easter, but she wasn't feeling well. We didn't know if this was due to her [presumed] GI virus, the steroids, both, or something else entirely. It is such a fine line we walk between taking the right precautions about Mollie's health and actually living and enjoying our lives.

We assumed that Mollie would feel better once she was off the steroids, and Saturday morning, she did seem to perk up a bit. She dyed Easter eggs and went to an Easter egg hunt at the local church. But we could tell she was exhausted and when we got home she took a nap. A few hours later, when she was still sleeping, we checked her temp and it was 102! We quickly packed up, called the oncologists, and headed back to Augusta (~2.5 hr drive) to the ER.

This was terribly difficult for both Mollie and Lucy. Mollie was obviously feeling terrible, but really didn't want to leave. Easter is her favorite holiday and she just loves being around her grandparents and great-grandparents; we don't get to see them often. It was also heartbreaking to see Lucy's response- she clearly didn't understand why we were suddenly leaving and she just laid on the floor and cried. We try not to dwell on it, but I hate that cancer takes away these simple joys from our family.

Matt took Mollie to the ER, while I stayed at home with Liam and Lucy. He ended up fainting while she was being accessed and falling on one of the nurses. They actually brought in a stretcher and oxygen for him- he was fine after a few minutes. It really scared Mollie- she told me this morning that she thought he had died and her heart was beating really fast for an hour. Despite that, she did great with the IV access, X ray, and all the other ER procedure. Her counts were great (ANC was above 4000), so they gave her IV rocephin (antibiotic) and told us to control her fever with Tylenol, keep her well hydrated, and go to clinic on Monday.

So... that brings us to today. Easter Sunday. The kids woke up to Easter baskets, but that is about all we could manage. The pollen is horrible here right now. The earth is literally coated with yellow- cars leave tire tracks in it when they drive down the street- and pollen is just hanging in the air. We don't want to go outside and we're exhausted. ~~All the stores and restaurants are closed, so even if we had the energy, we can't have a special meal together. We're probably going to have turkey sandwiches for dinner!~~ But Mollie still wants to put on her fancy Easter dress and new shoes and hat... so maybe we'll dine on the fine China if I can muster the energy. Matt is feeling horrible from his allergies, lack of sleep, and, probably, from collapsing in a heap on the floor last night. He is sleeping right now- if he wakes up feeling a little better, maybe we'll think of some small way to celebrate Easter. Update: The restaurant in the new Sheraton hotel near our house was open, so we dressed up and had a delicious dinner. Mollie didn't enjoy her food, but she sure gobbled up double chocolate cake for dessert!

Despite the circumstances, I am content that Mollie is feeling a little better and that we are all home under one roof. Mollie was thrilled with her Easter basket surprises, Lucy was thrilled with the candy, and Liam enjoyed the attention of his sisters. Hoping that Mollie feels even better tomorrow- she is supposed to start spring break art camp (after clinic, of course).

And we're home!

2010-03-31T23:48:00.002-04:00

The big concern (why Dr. Vega sent us to the ER) was that Mollie might have a bowel obstruction (the abdominal pain) and/or be dehydrated (from the diarrhea). Well, they ruled both of those out in the ER and sent us home with instructions to use Tylenol for pain and wait for this to go away in a few more days.

Also, the clinic is closed tomorrow and Friday (they are moving to a new location for remodeling), so we would have to use the ER anyway if we waited until tomorrow.

We are so happy to be sleeping in our own beds. Mollie isn't feeling much better, but she's sleeping. That might be the best medicine of all. We had such a great crew of doctors and nurses tonight- it was almost pleasant. I said almost.

ER

2010-03-31T20:15:00.001-04:00

Well... Mollie still not feeling well and now has lower abdominal cramping/pain. We called Dr. Vega and he sent us to the ER because the clinic is closed until Monday (they are moving to a new location). We are waiting in a conference room next to the ER waiting room so Mollie doesn't get exposed to anything else...