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!
12.21.2011
9.26.2011
Clinic Update
Mollie had clinic today (I just realized I forgot to post about August clinic because Matt took her to the appointment. Oops!).
Great news- her ANC is 2800- perfect! All of her other blood counts (WBC 6.3; Hgb- 12.7; Plt 219), electrolytes, and liver enzymes are in the normal range too.
But the visit was a little difficult because they sprung a flu shot on her and needed to get blood via normal venipuncture (in the arm) and not Mollie's preferred finger stick. Mollie cried lots of tears and begged me to let her wait on the flu shot. While it was hard for me to see her cry, it reminded me that it has been over a year since she's had any invasive procedures (besides the regular finger or arm stick) and she's forgotten what it is like to deal with surprises at the oncology clinic.
Child life was great at helping her deal with it; they gave her the option of using freezy spray (a numbing agent that they spray on the skin). Mollie had never used it before, so they brought in a teddy bear and demonstrated on him and then let her take the bear home! She forgot all about the pain after that.
The other good news from Dr. J (oncologist) is that Mollie now only has to be seen in clinic every 3 months! Sept. 3 was the 1 year anniversary of her end of treatment (!) and that means they can space out the follow-up visits further. Mollie is happy about it; me, not so much. I like the peace of mind that the monthly CBC offers, even if it is a false sense of security.
That's it for now! Have a great week!
9.01.2011
It's That Time of Year Again
You can tell from all the gold ribbons plastered everywhere, the corporate sponsorships, and TV specials, right? Right.
Tragically, pediatric cancer doesn't get the attention and research funding it deserves. And kids need adults to advocate for them and give them a voice. Four-year-olds can't get all their buddies to join them in letter-writing campaigns and fundraising events. It doesn't help that September is such a busy month. Kids are just going back to school, everyone is adjusting to their new routines, and there's not much time to add anything else to the mix. But, it is what it is. We've got a month, let's make it worth something.
Please don't let this month go by without doing something! What can you do?
- Make a donation to your favorite pediatric cancer research organization or charity
- Make a meal or send a gift box to a child (or family) fighting pediatric cancer or suffering the aftermath
- Donate blood
- Donate (new) toys or books to your local children's hospital
- Write to your Congressman and tell them you want to see more federally-sponsored pediatric cancer research
8.25.2011
G2D1
The first day of school is already here? Here's to a great second grade year! Good luck Mollie!
P.S. Mama promises to write a longer update soon. So much to write, so little time!
7.29.2011
Summer of Confidence
This summer, Mollie is making up for lost time! She is busy mastering things that she couldn't or wouldn't attempt while on chemo: riding her bike without training wheels and learning to swim.
She was treading water in the "deep end" at her lesson this morning!
She is also reading chapter books, some by herself and some together with me. So far she has finished Harry Potter and the Sorcerer's Stone, The Secret Garden, A Cricket in Times Square, and we are about halfway through with The Wind in the Willows.
My parents were visiting last week and we all had a great time, despite the heat. Mollie expressed interest in doing some needlework (cross stitch), so my mom picked up a kit at a craft store and taught Mollie how to get started. Currently, she is working on making a cupcake design for Lucy. It's a great quiet time activity that incorporates a lot of skills- manual dexterity, pattern/chart reading, counting stitches, and following directions.
This weekend Mollie heads off to Camp Rainbow. It is hard to believe this is her third year! Leave a comment or send an e mail if you would like her address to send her a card.
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.
7.12.2011
Clinic Update
Mollie had a great in-and-out clinic visit today! Her counts were perfect:
Plt: 209
Hgb: 12.7
WBC: 6.8
ANC: 3700!
She is enjoying science camp this week in the mornings, followed by afternoon errands. Today it was oncology clinic, tomorrow it is her follow-up neuropsych visit.
On a different note, last night we found out that Mollie, Lucy, and Liam's second cousin was diagnosed with Hodgkins lymphoma. He's only 10 years old. Our hearts go out to their family. We know the awful feelings they are experiencing. Please keep them in your thoughts and prayers!
7.11.2011
Fundraising
Why haven't we done any fundraising for pediatric cancer in a while? Numerous reasons. Just being busy with moving to a new state & raising three (awesome) kids. Feeling the need to take a break from cancer since the end of Mollie's treatment last year. Maybe some confusion about which charities to support.
As the 3rd anniversary of Mollie's diagnosis rolled around this June, Matt and I had a serious talk about starting a foundation in Mollie's name to raise money to donate to a pediatric cancer organization of Mollie's choosing. We still intend to do this someday, but the day after this conversation I saw a post on Facebook that seemed to be speaking to us. The post, from CURE Childhood Cancer, a nonprofit that I trust and support, said
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.
7.08.2011
Neuropsych. Evaluation
Well, we have finally started Mollie's neuropsych evaluation. It is going to happen over 3 appointments and we did the first last week. It was was 3.5 hours of testing. First we met with the doctor and talked together about Mollie's general disposition, likes and dislikes, and aptitude for different subjects. Then came the wait. Mollie met with the testing specialist (XO) for 3 hours, while I sat in the waiting room filling out a questionnaire and surfing the net.
At the end of it all, XO brought Mollie out to me and commented, "She's bright. Very bright!" So, she has about another 1.5 hours of testing left. Her first grade teacher will fill out an assessment and Matt and I will send in our independent evaluations as well. Then we will meet and discuss the results of the evaluation.
The point of all this? Well, there are known late cognitive effects of chemotherapy (that happen months and even years after the end of treatment), particularly from the methotrexate she received in her cerebro-spinal fluid at least 15 times. So, the idea is to perform a baseline analysis to make sure all her learning needs are being met currently and to establish a baseline from which to judge any future changes. We need to know how Mollie learns so that we know what changes to look for and have an idea of how to help her should she need it.
I feel that this analysis will be very useful; monitoring the long term side effects of the chemotherapy is incredibly important for Mollie's long term health. While I know that the oncologists recognize that, I realize they are also primarily focused on helping these children survive (and rightly so). That puts a lot of responsibility on the parents to make sure that the children receive adequate long-term follow-up care. We are trying our best to stay on top of all of this, but it's hard because so little is known about the long term effects.
Coming soon... a post on fundraising! Matt will be running for a CURE in November and we can use all the help we can get!
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!
6.30.2011
Norway (Warning: Lots of photos!)
 |
| The girls with Uncle Sam in Balestand |
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 |
 |
| 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 |
 |
| 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 |
6.17.2011
3 years ago today...
Mollie was diagnosed with leukemia. What started out as a doctor visit for a fever and malaise turned in to every parent's worst fear.
I remember the events of the previous day- the visit to Dr. B and her sending us to the ER at Children's Medical Center. Waiting for endless hours in a triage room, with Lucy in one of those big metal cribs they have in the hospital and Mollie scared to use the funky toilet, feeling annoyed but increasingly worried. They weren't really doing anything but giving her IV fluids, tylenol, and pulling some labs. Child life was wonderful! I can't remember who it was... maybe Katie or Jamie? They brought in princess movies, games, and a tiara and wand. I had to go teach a class that night. By the time I returned to the hospital, Mollie had been admitted and transferred to a room on the 5th floor, where she spent the night.
Much of what happened next is a blur, but she did have a bone marrow biopsy at some point during the day. What I remember most vividly is Dr. Vega coming in to the room and saying with his Spanish accent, "She has leukemia." I can still hear every inflection in his voice, like a slow motion replay.
In some ways it seems like such a long time ago, but at the same time, just thinking about it makes my heart race and my blood pressure rise. That evening, Matt and I remarked that we were fortunate that we had a diagnosis, and we to focus our energy on healing Mollie, not dwelling on unanswerable questions and sadness.
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!
6.14.2011
Clinic Update
 |
| Good thing school is out because someone is too cool! |
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?
6.08.2011
Sunscreen Update
I mentioned issues with sunscreen in my last post. Obviously, avoiding the sun is impossible since we live in North Carolina. Finding a sunscreen that works is important. In my research, I came across the Environmental Working Group's Sunscreen Guide - a great website that assigns a "hazard score" to sunscreens based on their UV protection and health concerns. They rank each of the specific ingredients as well, AND tell you how much data there are to support the rankings.
I looked up the two sunscreens we had used on Mollie- one contained octobenzone and the other contained retinyl palmitate (yes! vitamin A and it was not listed in the active ingredients of the Neutrogena Sensitive Skin sunscreen). So, armed with this new info, I purchased two new sunscreens and we have success! They don't rub in as well as the others, because they contain zinc oxide, but we will take that over an allergic reaction or sunburn any day!
This is Mollie's last week of first grade (how did THAT happen?). She's looking forward to some great adventures this summer, but we will kick things off with a clinic appointment next week. Just writing that reminds me that I need to ask Dr. J about when she should do the neuropsychiatric assessment.
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.
5.22.2011
Update, Long Overdue
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!
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!
4.27.2011
Easter Celebrations and Christmas in July
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!
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!
4.16.2011
Clinic Update
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!
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!
4.11.2011
We're still here
... 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.
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.
3.25.2011
Courage
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!
~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 |
3.24.2011
Clinic Update & More
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.
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.
3.07.2011
Birthday Girl
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... |
Here's to Mollie! May she have a blessed and healthy year, full of learning, exploration, friends, family, and fun!
3.01.2011
Time Keeps on Slippin'...
... into the future!
Still in a bit of shock that Mollie is going to be 7 this Sunday. Yes! Seven!
Still in a bit of shock that Mollie is going to be 7 this Sunday. Yes! Seven!
2.22.2011
Clinic Update
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!
2.10.2011
Growth
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.
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.
1.22.2011
1.21.2011
Give Kids the World
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.
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!).
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!
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.
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...
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.
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 |
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 |
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.
1.12.2011
Snow Days
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!
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!
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.
 |
| 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.
Subscribe to:
Posts (Atom)