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!
7.08.2011
6.30.2011
Norway (Warning: Lots of photos!)
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| 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!
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| Just outside the Barony at Rosendal |
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| Calling Cornelia, the head sheep |
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| Aboard the ferry... it was windy! |
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| Mollie's favorite flower- foxglove |
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| Lucy and Liam at Bulvik |
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| Charlie, Matt, and Liam awaiting the ferry |
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| At the Bryggen |
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| 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!
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| 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
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| 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!
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