Wednesday, September 30, 2009

Let the Scanxiety Begin may remember me telling you about this word about 3 months ago. It is a term coined by some cancer parents that described the intense anxiety you feel as you approach your child's next scan date.

Well, I've got it again. We are a few weeks away from Brady's scans yet, but the familiar pit in my stomach is back. I get disappointed in myself when I let anxiety get the best of me. I know that God tells us in the bible to "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Philippians 4:6,7) And there is no denying that God has provided me with that peace SO many times throughout this journey.

Yet I still struggle with anxiety...not in the busy moments of my day...but in the quiet moments...while washing the dishes after the kids are asleep, when I lay down at night and wait for sleep to come, and while I drive Brady to Rochester a few times a week. I totally consider this area of "me" a work in progress. I think this is unfortunately another casualty of childhood cancer. This experience leaves a parent a bit jaded, a bit fearful, somewhat skeptical that life is going to turn out okay.

We can file this post away in my "Being totally honest, life isn't always so rosy" file! I know that having a child with cancer isn't the only experience in life that can cause these feelings. Perhaps you have been thrown one of life's curve balls, the kind that knock you off your feet and tarnish the picture of what you thought life was going to be like. For me, I can't imagine battling this alone, without God, without my faith. It doesn't take it away, but God is strong when I am every area of my imperfection, He is perfect and I can find the hope and encouragement I need by turning to Him.

And that brings me back to...

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God;
and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

Philippians 4:6,7

Tuesday, September 29, 2009

Brady at PT

After an hour and 10 minute commute to Rochester this morning, our little hero was in quite the somber mood for PT. The rain and the construction caused our ride to be much longer than usual. Despite his not-so-spunky demeanor, I got some great pictures of Brady and Linda working hard!

Brady sitting and watching Linda demonstrate what he will do!

Up and ready to go!

Brady had to "pick apples" by reaching up high on his tippy toes. Then he put the apple in his pocket.

Next he got to jump on the trampoline! Look at how high he was:)

Finally, Brady had to walk across the balance beam and put his apple in the bucket. Go Brady!

I wanted to share a beautiful article that was written by our friends Mark and Laurie Napoleone and published in the Batavia Daily News. Please click here to read how we can all Lend a Hand for Hope against childhood cancer. Thank you Mark and Laurie for your hard work, dedication, and passion towrads helping families affected by cancer invovling one of their children. THIS family knows how much your generosity can make a difference, and THIS family is proud to join you in the fight!

Monday, September 28, 2009

Adventures in Toddlerland

Rainy days mean no going outside, which means mommy has to find ways to entertain the monkeys for 9 1/2 hours until daddy gets home! Between refereeing fights over the green matchbox car, a baby who likes to tip over garbage cans, and a little person who climbs bar stools to explore counter tops, keeping the masses safe and happy is a tough job:)

Despite the chaos, we had a great day! During Allie's nap, the big kids and I "made" cookies. Yes, this mommy proudly buys the cookies that are premade and all that needs to be done is to plop them on the cookie sheet. I have plans to clean out my baking cupboard this week and have intentions of throwing out everything I bought the year we got married. I have made a commitment to bake more, but for now, I thank you Pillsbury for making a baker out of me in just 9 minutes:) Here is how three 2 year olds organize cookies on a cookie sheet...

The next adventure of the day involved Cara finding a roll of scotch tape within reach and ever-so-quietly having a ball with it while mommy made dinner. Here is what ensued...

I didn't scold my monkeys, but did tell Cara that I didn't want her touching things on the counter. So, of course, the next thing that happened was the three of them simulated a time out. They all went and plopped themselves on the time out mat and just goofed around...

And dinner turned out delish! I'm going to share this little dinner of mine with you. It's one of those easy, no prep dinners for busy moms like me (inexpensive too!) I call it my Salad Bar Quiche.

While I'm at the grocery store I go to the salad bar fill a small take out box with ingredients for a quiche. This way I don't have to buy large amounts and I don't have to do the prep. For my quiche, I get the following from the salad bar: diced ham, diced bacon, cheese (all kinds available:), and a big spoonful of the pico de gallo (salsa looking stuff).

Meg's Salad Bar Quiche

Thaw 1/2 bag of shredded hash browns. Mix with 4 tbsp melted butter. I season with paprika, salt, and pepper.
Press into pie plate and bake at 425 for 15-20 minutes until JUST started to brown
Slightly beat 5-6 eggs with a little milk
Stir in salad bar ingredients and pour onto hash brown crust.
I plopped a few cubes of Velveeta into mine before baking b/c I had some in the fridge. Yum!
Bake at 350 for 35-45 minutes. I bake mine for 45 min because I like the eggs completely set and the edges crispy.
I love this meal because it is easy, cheap, and everyone in the family loves it!

Anyone have a great, easy recipe to share?

Sunday, September 27, 2009

We Went Bowling!

Cousin Aubrey's birthday party at the bowling alley was a hit! The kids walked in like they were scared to death, but soon realized what bowling was and they wanted in on the fun! The biggest problem was getting them to understand why it was called a bowling alley. Every time we said the words "bowling alley" that kept wondering what their baby sister had to do with it (Allie!) They would say, "No, Cara's going bowling! Not Allie!"

Enjoy the pictures!

Oh! And I forgot to mention Friday that Brady's scans have been scheduled for Friday October 15th. We need lots of prayers in the coming weeks in this area!!! We are praying for no change in the small area of tumor in his spine and no new areas of tumor. Or better yet, we are praying that God has completely eradicated the remaining tumor, making Brady cancer free! As I was writing that, I was reminded of a verse but couldn't think of it exactly. It speaks about how God can do what we cannot! I think about the amazingly talented surgeon that operated on Brady. They estimate that he removed at least 95% of Brady's tumor...that is truly amazing! But that surgeon couldn't get it all...his abilities were limited as to what he can do. I'm so glad that my God isn't limited by what He can do. Here is the verse (I just love that you can Google bible verses)

Luke 18:27
And he said, The things which are impossible with men are possible with God.

Saturday, September 26, 2009

Footy PJ Time!

Another thing I just LOVE about fall is seeing my kids in footed pajamas! Just about nothing is more cute than a kid in those precious things:) We made a big deal about getting them out for the first time this year, and the kids played right along. They are SO excited about wearing pjs with feet! I'm a little less excited to realize that they are completely able to unzip those pjs this year...uggh!

I bought a scarecrow for outside our house and the kids are just amazed by it. Brady keeps saying, "Oooo mommy, a scare-CLOWN!" Ha! I'm hoping that we get to take our family trip to the pumpkin farm next weekend.

Tomorrow is a first in our family...the Williams family will be going to...a BOWLING ALLEY! My wonderfully adorable niece Aubrey turned 3 this week and her party is at a bowling alley tomorrow afternoon. Just one will be bothered by how loud my kids are in a bowling alley. Perhaps this will become our new hang out!

Happy weekend!

Friday, September 25, 2009

So Glad She's Mine:)

Oh my Cara Kathleen...she is so special, so amazing...and I'm so glad she's my little girl. I know I talk so much about Brady (how could I not after all!) but honestly I marvel at each of them everyday. Each of them is my "favorite" depending on what day you ask me! Today, Cara was my favorite!

She had her preoperative physical this afternoon so we got to spend some quality time together. Cara, despite her definite spunk, is a very complient, loving little girl which always makes for some great one on one time together. She chats a lot in the car, which is SO different from Brady. All the way to Rochester she sat in the back seat and chatted about what she saw as we drove. Things like, "Oh mommy, clouds make me SO funny! Cara loves clouds and sun SO much!" came from the backseat and melted my heart as I listened in awe to her take on the world. She often talks about her feelings (is she her momma's daughter or what?) and gives her opinion openly! As we waited at the doctor's office, she casually flipped through some children's books saying, "I don't like this one, Nope, not this one either!" and put them back after giving me her two cents with each book. When we got into the room, the doctor told her she was going to have her lay down so that she could feel her tummy. As the doctor went to pull up her shirt, Cara proudly yanked down her undershirt and said, "Look at Cara's cami (camisole)" I had told her that is what they are called a few weeks ago when I bought them for her. And nothing makes a momma prouder than when your two year old speaks in amazing sentences in front of the doctor. "What shape is this wall mommy? Wow! Look at all the big circles on the floor!" She is so verbal and it is such a delight to listen to her explain the world!

They came in to give her the flu shot and another vaccine she needed, and they realized at the last minute that they had the wrong shot. At this point they had already wiped her arms with the alcohol swabs and were about to give her one in each arm simultaneously. She had NO clue what was about to happen, but I sure did. Then they realized they had made a mistake, and we had to wait 5 minutes while they went to go and get the right shot. Meanwhile Cara told me, "Wow, that lady cleaned Cara's arm nice!" When they came back, they quickly gave her the two shots. She flinched a little, but never cried. After we left the office and were waiting to check out, Cara pointed back at the room and said, "Ouch back in there mommy!" What a brave girl she is.

I'm so blessed to be her mommy!

Thursday, September 24, 2009

Busy Mom, Busy Kids!

The end of this crazy week is almost here! It has been busy busy, but with a lot of fun outings for me too! I just wish I could have spread all of these activities out over the next month, not just squished in one week. Today was my ever-so-exciting shopping day at the twice yearly consignment sale that I participate in. Basically I resell some of my nicer clothes and toys, volunteer for 8 hours, make 70% of what I sell, and get to shop before the public. I grabbed snowpants galore (3 pairs for our family and 4 pairs for friends' kids!), boots, sneakers, TOYS, clothes, and yes, even a potty seat. My next job is to write a letter to Santa to let him know that he can skip our house for Christmas this year because we are ALL SET! Woo-hoo! I love bargains almost as much as coffee!

Tomorrow is Cara's pre-op physical for her eye surgery (Oct 5th). Matt and I have plans for dinner with some of his coworkers. I can't remember the last time we went out to a meal with other adults:)

Brady and I had a good morning traveling to PT. We have decided to take the back roads for the next month or so (until the white stuff starts to fall) so that we can appreciate all of the wonder of fall. He LOVES to look out the window for different colored leaves. I was a proud momma at PT today when Linda helped him climb a ladder. It was a rope-type ladder with wooden rungs, so it wasn't very stable. But he coordinated his hands and legs and pulled himself with help from Linda. What a brave and strong boy he is!!! We are all noticing that he seems to be heavy-footed in the last few weeks. We are not sure if this is because he has been wearing sneakers more frequently, or if something else is going on. Of course this raises all kinds of red-flags for me, but I'm sure it is nothing. Scans will be sometime in mid-late October.

As far as cancer facts go, I have been quite forgetful lately. Also, I was having trouble finding new statistics out there! Perhaps someone reading has a question about Neuroblastoma? I would be more than happy to answer it, or at least find the answer:)

Happy Friday to all!

Wednesday, September 23, 2009

Crazy Consignment Meg

Back by popular demand (not really) it's Megan's amazing husband. Megan has been gone all day volunteering at the Rochester consignment sale to she can get first dibs on all the stuff before the general public. She worked the 1-9 shift.

Not too much going on today as far as I know, but then again when I'm at work all day more goes on than I know about. I brought home Chinese for dinner and quickly learned that Allison loves it. That's great since liking Chinese (along with pizza, wings, and fast food) is a prerequisite for being a Williams. So long blog readers!


Tuesday, September 22, 2009

Time for Fall

Fall is certainly here! I LOVE this time of year. The kids love to see all of the decorations that I put up around the house too! On the way home from PT, Brady and I stopped at a farm stand and bought pumpkins for each of the kids. I laughed all the way home watching Brady hold, rub, and hug his pumpkin as he sat in his car seat. Imagine the disappointment when I made the kids put them out on the steps outside!!

I had my first MOPS (Mothers of Preschoolers) meeting tonight. I'm just so blessed to have that group of women as a part of my life. We meet twice a month and now have over 30 moms in our group. It's such a nice chance to get out with people who "get" what it's like to have little ones.

Matt called and got the results of my Xrays. Nothing much unusual showed up, so this confirms Matt's theory that it is a muscle/joint problem. He is so wonderful to work on my neck/back every night. He is constantly trying new things to help me get better. What an amazing husband God has blessed me with...

This week's schedule is very busy, but next week isn't at all! So, I'm just chugging along this week. Tomorrow I'm volunteering at the consignment sale that I sell my kids' clothes/toys at each season. I have mostly boy's clothes since Allie is wearing many of Cara's old clothes. Then Thursday is consignment shopping day...woo hoo! I LOVE buying second hand and even did some Christmas shopping there last year. Shopping therapy should do me a world of good!

Thank you for all of your comments, phone calls, and emails this week! It is so nice to know that I have a supportive group of friends who care:)

Monday, September 21, 2009

Taking Care of Me

I took full advantage of my unexpected day at home. I started the day at my doctor's office, then I went for Xrays, and then spent the rest of the day trying to deal with this pain. Thank God for my mother in law who could be here with me today. The doctor gave me two new perscriptions to try and I was pretty sleepy from them, but without any pain relief. Ughh...I'm trying really hard to keep perspective on all of this. I'm praying that this is temporary and that I'll be feeling better soon.

The kids are doing great and they have been really sweet to me since I've been home. They ask to kiss my boo boo and want to snuggle next to me when I'm on the couch. They are the best medicine of all:) And then there is my Matt, where would I be without him?

So my friends, another gloomy post from yours truly. But fear not, I have the joy of the Lord in my heart...I just have to get this pain in the neck to go away:)

Sunday, September 20, 2009

Home Sick Momma

So I flew home from Albuquerque a day early. I'm home, back in my world, and my heart is happy. I had a great, albeit short, trip to New Mexico, but last night I just knew I had to get home. I felt sick the whole time I was there, actually quite sick on Friday night. That combined with a ton of neck pain and just a sense of needing to be back with my family caused me to switch return flights from Monday to Sunday. I think Matt was shocked when I called him. Here I was having a "break" from my stressful world, yet I wanted to get home almost as soon as I left. I had fun while I was there too! Julie's family was wonderful and I even found New Mexico to be a very amazing place. I'm coming to realize that I'm just a different type of girl than I used to be. Perhaps my adventurous, care-free days are behind me. I needed my family and am so glad to have them back! I'll share a few pics and some stories about my trip tomorrow. For now, I have a suitcase to unpack and a hubby to hug.

Saturday, September 19, 2009

22 diapers and 4 baths

No major events at the Williams house today. Most of the time our kids play well together. I did have to break up the normal fights over things like drumsticks and stuffed animals, but all in all not bad. Believe it or not Allison is the one to really watch out for. I really think she just disguises her playing until the right opportunity arises - an open door, dishwasher, etc. Days like this make me really thankful that our kids are such great sleepers. I know that when we put them down at 8:00, we probably won't hear anything until 7 or 8 the next day. At least some time to refuel and clean up from the chaos... until tomorrow.

Friday, September 18, 2009

Day 1 - 1 Matt, 4 kids

So my lovely wife informed me that I should keep blogging while she is in New Mexico. So far so good. No major bleeding, concussions, or broken bones. I've had my fair share of handling these monkeys by myself, just never for three days in a row. To my knowledge no one has. So leave it to this fearless warrior to take on these kids armed only with diapers, toys, and food. Truth be told I really don't sweat stuff like this. I'm actually looking forward to spending some quality time with my amazing children.

Every day some really funny things are said in this house. I thought I would leave you with a few of today's good ones. Brady was walking around with a Snow White sticker. Cara went over to him and said, "No it's Cara's. Cara is a girl and that's a princess sticker so it's Cara's. Yeah." Brady, blown away by her logic, just gave her the sticker without a fight. Later when we were praying for mommy's safe flight Cara said, "Mommy is on a plane to see Julie." Then Brady yelled at the top of his lungs while jumping, "Mommy is in the clouds RIGHT NOW!"

Signing off,


Thursday, September 17, 2009

Off to Albuquerque!

I'm all set to go! Okay, truthfully I haven't even started packing, but Matt gets home at 1pm tomorrow, and I'm leaving at that gives me 1 good hour to get things in a suitcase!

I'm cringing at the thought of leaving my babes for 3+ days. You know how when you leave your family you miss the sounds of their voices, the touch of their tiny hand in yours, even the way their hair smells when you are snuggling them on the couch? And did I mention that Eli is in love with his mommy this week? He has always reserved his affection for me, almost as though he knows how much it bugged me. But THIS week, he is thanking me for everything (example, "Thanks Mommy for turning on the light!") He is running into the room just to give me a hug, and telling me that he is going to wave at me when I'm up in the airplane. Oh he is the sweetest, schmoopiest boy!!! And Cara is saying the funniest things everyday that I'm afraid I'm going to miss something! Yesterday Brady was telling her to come and play with him. She looked right at him with her hands on her hips and said, "Not now Bwady, I'm POOPING!" Allie girl is a sweetie pie as always and has starting saying "Ma Ma Ma" as she crawls around...makes me just melt. And let's not even talk about my Brady...

BUT!!! I am excited to go! It's that kind of excitement where you just want to get there and get on with it already. I can't wait to meet my friend's family and see a new part of the country! Enchiladas and cacti here I come!

I told Matt that I thought it would be great if he took over blogging duties for the weekend. He looked at me with a less-than-excited expression. Tune in tomorrow for the exciting conclusion on that one.

Perhaps I'll have a minute to check in while I'm gone?

In the words of my kids, "Ta ta for now!"

Wednesday, September 16, 2009

Brady's First Appointment with Dr. Rubery

We had a really good appointment with Dr. Rubery (the spine surgeon) today. We went over Brady's medical history, including his surgery with Dr. LaQuaglia and Dr. Bilsky at Sloan. Right away Dr. Rubery said he knew both doctors and had actually done his residency with Dr. Bilsky 20 years ago. He knew Dr. LaQuaglia because his niece was operated on by him 15 years ago. He shared with us that she had Neuroblastoma too, and although the surgery went well, she didn't survive the cancer. That truly hit home...

He sent Brady down the hall for a few X-rays. He needed to have them because the MRIs Brady has had done are with him laying down. He needed to see his spine in a standing position because it affects his alignment. I went with Brady, and Matt stayed and discussed Brady's history a little bit more. Brady had to stand completely still for the XRAY. He did really well, and was totally adorable in a little gown with clowns all over it. He even said, "Cheese!" when the tech took his "picture."

Then we went back to the room to discuss the results. Dr. Rubery noted some slight scoliosis at the surgical site. I'm sure most of you are aware of scoliosis, but if not, you can think of it as a left or right curvature of the spine. He also noted slight kyphosis at the surgical site (curving of the spine outward). He explained that there is not research-proven way to prevent scoliosis and kyphosis at this point. Bracing might help, but it also might restrict growth in his chest. So, we are going to do X-rays every 6 months to watch how his spine grows and changes. More than likely, if deformity happens, it will occur when a growth spurt happens (adolescence). A good friend of mine reminded me today that we have a lot of praying time between now and then. Can't help but think of the lyrics, "Jesus, He can move the mountains. Our God is mighty to save!"

I will be going out of town this weekend from Friday night to Monday night. I'm flying to Albuquerque to visit my friend Julie and her family! I'm really excited to see them and the southwest!! I'm also going to miss my family like crazy and am trying not to think about that part:( A change of pace can be so refreshing and I am so grateful that my wonderful husband is SO capable and willing to hold down the fort while I'm gone! I'm even thinking about passing along the blogging duties to him for the weekend...I would love to be a reader for a few days:)

I wanted to share this great resource for facts about pediatric cancer. If you CLICK HERE you can get to the Candlelighters Childhood Cancer Foundation website. This particular page has a wealth of information regarding statistics and funding. Very interesting stuff!

Tuesday, September 15, 2009

I Have Monkeys for Kids

When did they turn into monkeys? I've always been able to brag that my kids didn't get into much trouble. They have always had free reign of most of the house and I haven't had to watch them every second. In the last week they have decided to climb everything all day long! The climb up on furniture, onto the backs of the furniture, onto tables, on top of their big toys, onto the stools in the kitchen, up their changing table, and now are attempting to get out of their cribs! I can hear the laughs from my fellow-triplet moms already! They told me these horror stories and I always said that my kids just don't do these things and I wasn't sure why! Well ladies, laugh all you want, then please tell me how to keep them from breaking their limbs!!!

Allie continues to be sick, poor sweetie. Her spirits were pretty good all day despite the runniest nose ever! She is also a monkey by the way. She "gets" everything that the big kids do and follows along as best she can. She is standing on her own now, not taking steps yet, but can stand indefinitely! She enjoys crawling around the house with my kitchen towels over her head, knocking down stacks of diapers in the nursery, and eating scraps of food left behind on the floor after meals. I joke that with the 4th baby you don't technically have to feed them, they find a way to survive eating whats on the floor...ha!

Tomorrow is our appointment with Dr. Rubery the spinal surgeon. Matt, Brady, and I will be leaving at 8am for the 9am appointment. We are praying the prognosis for Brady's spine is better than we expect. Either way, we are praying that God will work miracles in this area and allow Brady to grow big and strong without any restrictions on what he can do! Isn't it cool that God can overcome any prognosis?

So after 12 hours with my 4 little zoo creatures, I am tired, but certainly just being home all day helped to restore my spirit:) My kids are amazing, totally wacky, but amazing!!!

All dressed up for Grandparent's Day

Helping mommy make mini pizzas for lunch

It's all about firefighters around here!

Today's cancer fact: Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.

That statistic causes me to just stop, and thank God for Brady's "early" diagnosis. This is just not the case in SO many instances of childhood cancer. Thank God that Brady was showing a symptom (not walking) so that we knew something was wrong.

Wishing you a wonderful Wednesday...

Monday, September 14, 2009

Feeling like Throwing in the Towel

I had a bad day today. There, I said it! It's one of those days where I've been avoiding blogging because I know I'm going to end up sounding like a whining complaining mess. But in the interest of maintaining my honesty, you might have to endure some whining and complaining:(

Truth be told I've been struggling with some issues of my own lately and coupled with the other issues dealing with the kids, I feel like my load is getting to be a little too heavy. I have dealt with muscle spasms and back/neck problems for about 10years, they come and go, sometimes lasting a few days, sometimes a few weeks. It seems like these issues have caught up with me in a major way. I can't say it is any big surprise...lots of stress + lots of lifting = back/neck pain! Matt and I both agree that it is time for me to get to the bottom of things and figure out how to manage this pain. Now I just have to find the time to take care of me. It sounds silly, but there just isn't ever time to go and get XRAYs done or get to the doctor. But I know I need to because the pain is really limiting every part of my day. I'm not living my life with the joy that I want to have because of pain and that stinks! I haven't wanted to discuss all of this on the blog because I want to keep the focus on Brady and our family, but it is affecting me and my attitude, and I wanted to keep it real with all of you:)

Today started off as any other and ended with yet another child sick! Cara's rash seems to be getting better, however the Prednisone is making her crazy (think rabid animal!!) So we stopped giving it to her. I have an order for a blood screening to test for some of the major food allergies. Allie continued to have a runny nose throughout the day and woke up very grouchy after her nap. After dinner Matt and I looked at each other and both knew that this reminded us of her "ear infection" cry. So, I got a 7:30pm appt with the doctor and off we went. On the way there, I was driving on the expressway, and all of a sudden I heard her gagging and start throwing up. She was really struggling to get it out of her mouth because her seat is still rear-facing and sort of reclined. I couldn't see her and was very scared because all I could hear was choking and gagging. I managed to pull over on the side of the highway and found her just covered head to toe in vomit. Ughh...Luckily I had grabbed an extra outfit! I cleaned her and the car seat up and put her in one of the other three seats (one of the advantages of having 4 kids!) When we got to the doctor she noted that Allie had some dark "suspicious" looking fluid behind her right ear. Given her history of ear infections, she gave me an antibiotic and sent us on our way. We both figured that the vomiting might have just been a fluke because she was crying in the car. She is very upset and I can tell she hurts, but she finally settled down by about 9:30pm...poor baby.

So there it is. Yes I feel down, sorry for myself, and just tired of drama around here. It's funny when you "survive" such a crisis as a child with almost feel like you should never let anything get you down again because you still have your child! But life continues to throw curve balls, doesn't it? And Megan is just a flawed human, complete with frequent pity parties, pessimism, and my share of bad days. I'm praying tonight for God to restore my spirit and to strengthen me so that I can be the best I can be for my family. I feel far from it!

Sunday, September 13, 2009

Off to the Ronald Mc Donald House!

We made our delivery today! Matt packed up the van with all of the wonderful donations made during the Brady Bash and we headed to the Ronald Mc Donald House in Rochester. We had never been to the RMH that is a few blocks from the hospital as we stayed at the House within the Hospital. This place was amazing! They have 20 guest rooms, several living room areas, and a gorgeous kitchen. We also got to see the pantry and laundry areas (I was definitely jealous of this part of the facility!) Here are a few pictures:

This was just 1/3 of the stuff!

Ronald and I:)

Cara seems to be getting better, although the Prednisone makes her quite moody! They only put her on a 4 day dose, so things should be looking up soon. The rash is still there, but much better than yesterday. That reminds me, I need to call the pediatrician tomorrow! She needs a pre-op physical in the next couple of weeks anyway, so I can make it a 2-for-1 visit and discuss the food allergy issue then too!

Today's cancer fact: Currently there are over 300,000 people living in the United States with a history of childhood cancer.

Saturday, September 12, 2009

Always an Adventure!

Today is officially Pediatric Cancer Awareness Day! In honor of this day, I wanted to share a link with you. If you CLICK HERE you can read all about the research grants funded by the Alex's Lemonade Foundation. I mailed our big donation check yesterday for...drum roll please...$2,700.48! Honestly, God was all over this project and blessed us beyond our highest hopes! Our goal was $1,000 and we had that before the end of day 1!!! On the website from the Foundation, they have a "fun fact" that says a donation of $2,000 will fund a research project for a week! I wonder which week we all will be funding soon...I wonder what developments will be made that week???

It's been a while since I have had a "ready to bang my head against a wall medical story" to share with all of you! Today is your lucky day my friends:) It all starts with me picking up fish fries for dinner last night. And they were delicious!! As we cleaned up after dinner we noticed Cara had a little rash around her chin and forehead areas. As the night went on it seemed a little worse, but not terrible. During the night she was up a lot, just crying and restless. By morning, her whole face was puffy and covered in a red, spotty, blotchy rash. She was really overtired and irritable all morning. I had Matt pick up some Benadryl on his way home from work this morning. She barely took a nap, and by 2:30pm was just inconsolable. The rash covered her tummy, back, neck, and her face. She was itching like crazy and I knew she must have had a reaction to the fish.

I called our pediatrician who told me not to take her to the ER unless she was having trouble breathing or scratching so hard that she bled. I just love advice like that. In those situations, I think to myself, "Oh yes, I will just sit here and wait until she can't breathe, or until she is bleeding...sounds like a plan." We decided I would take her to one of those Urgent Care places in Buffalo. On the way I called the insurance company and they assured me they covered Urgent Care for only a $20 copay (versus $100 ER). After a 40 minute drive, and a 20 minute wait, the triage person at the clinic told me that they don't accept my insurance because they are privately owned. She told me that another facility 10 minutes away would take my insurance. So, back in the car we went. We signed in, waited 10 minutes, got called up to the desk, and were told that our insurance was not accepted here either. With an itchy girl at my side, I looked at the lady in tears...she told me that there is another place, about 10 minutes away that takes our insurance. Instead of going totally postal (believe me,I was really close) I politely told her that I wasn't leaving until they called the other place to make sure we would be seen. She was very nice, and called and even got me an appointment for 20 minutes later.

Back in the car we went...only a 15 minute car ride, and 20 minute wait later, and we had a doctor standing in front of us!!! He quickly confirmed that she had a pretty bad reaction to some kind of food. By this point the rash was covering her entire body and she was quite swollen. He checked her tongue and breathing, which were fine. He explained that even though she had eated fish before without any problem, it was quite possible that she is now allergic to it. He prescribed some Prednisone and told us that we needed to follow up with our doctor and pursue allergy testing. Another 50 minute car ride and stop at the pharmacy later, and we were home, just in time for bed. I love when a 10 minute doctor's visit takes an hour and a half in the car, 3 different clinics, and 4 hours of my time:) I will tell you that I had the cutest, most well-behaved, rashy little girl on Earth with me the whole time. I love her SO much!

I will add *allergist* to my list of October appointments including Brady's cancer scans, Cara's eye surgery, Brady's spinal specialist, and Allie's spot on her leg being removed!

Friday, September 11, 2009

Remembering 9/11/01

Tonight I'm remembering those who lost their lives on 9/11/01 and remembering how important it is to pray for our country...

Thursday, September 10, 2009

Back to PT We Go!

Brady and I made the trek back to PT today. We have been off for a few weeks because there was a break for the school between summer session and the new school year. The "old Brady" (before cancer) would have literally had to start over with his PT Linda. Any amount of time lapse "before" left Brady feeling reserved, unsure, and unhappy! Not the "new Brady" (after cancer). When I told him over breakfast that we would be going to PT, he said, "Go to see Linda and play with toys!" It's funny that he always talks about playing with toys, not exactly what we do there, but I'm glad he associates PT with fun! He gave Linda a big smile when we got there and jumped right back into the routine. We continue to work on strength, balance, and coordination. Both Linda and I see a lot of improvement with Brady, boy has he come a long way! More than anything, this kid has gained confidence galore! Go Brady!

One of the concerns we are starting to deal with are the long term effects of Brady's treatment. With only two rounds of low-dose chemo, we are hopeful that Brady will not experience any of the late effects that some pediatric cancer patients deal with, including hearing loss and secondary cancer. However, because of the invasiveness of Brady's first surgery, there are serious concerns of spinal deformity becoming a problem. Matt is more of an expert in this area than I am, but my understanding is this: During the surgery, the doctor had to remove a large portion of the lamina around Brady's spinal column. The lamina is the bony structure around the spinal cord that protects it. Brady's lamina is no longer there from levels T2 to T7 of his spine (pretty much the length of his scar on his back). As he grows, there is signficant risk for spinal kyphosis. This is when the spine, instead of growing straight, grows into a hump because it isn't supported by the lamina. SO---we have an appointment Dr. Rubery (a pediatric spinal surgeon)at Strong next Wednesday. We want to establish a baseline for Brady's spine so that we can stay on top of this. We are curious to know if there is a preventative measure we can take (surgery, bracing) and what type of limitations Brady will have.

So, this is weighing on our hearts and minds as we head into next week. Brady is thriving and loving's hard to think of having to interrupt any of that with any sort of intervention for his back. But as always, we will do what we have to do for our Brady.

Cancer fact for today: Over the period from 1975-1995 the incidence of pediatric cancer increased by approximately 12% but mostly due to improved detection.

Wednesday, September 9, 2009

Feeling Sappy Tonight...

So, it is back to school week for many. I have officially been home on maternity leave for 2 years and 7 months. I get a little nostalgic this time of year, in my own little way I miss the excitement of a new school year. In my former life I was a teacher like many of my friends and although I was always sad to see summer go, I looked forward to the challenge of new groups of students every September. I find myself very conflicted lately, like many stay at home moms. Certainly I know I'm doing the most important job of all as I'm home raising my young children. But I know that change is on the horizon...This is my last year of maternity leave if I want to retain a position with the school district that I worked in. So, in a few short months I have to make very big decisions about the future. So many aspects of life weigh into this decision that it makes my head hurt just to think about it. I sometimes focus so much on the decision that I have to make for next year, that I forget that life will be changing yet again in a few years. My kids are growing up at a pace that I never thought existed. As I watch their legs hang down from their highchairs I realize that the baby days have slipped by with barely enough time to savor them. I think that is why God sent Allie to our family. I hang on every coo, every raspberry she blows, every bedtime snuggle...Motherhood happened so fast for me, 4 babies in just 19 months, and now I realize that as quickly as it came, it is leaving. And in 2 short years, my big kids will be off to preschool and the next year Allie will be going. And by that time I'll for sure be back at work full time, away from my kids for long periods of time everyday. Just the thought makes me want to run into their room right now, pick them up, and never let them go!

I guess the reason I'm so sappy tonight is because I feel so busy lately, even though I'm not working outside of my house! So, so, so, incredibly busy that I can't even imagine adding a career to this crazy life of mine. I could give up a lot of the "extras" in my life, but I don't want that either! On I go then, depending on prayer and coffee to get me through these crazy days. I tell you all this just because it feels good to let it out, and maybe there is someone reading who can relate and not feel so alone in their own crazy busy world! We're all in this together!

Cara and I went to Rochester today for her appointment with the eye specialist. He has suggested that she have surgery to correct the muscle imbalance in her eyes that is causing her head tilt. It is a simple surgery (well I don't think cutting into some one's eyeball is simple!!) and although it requires anesthesia, she should be out in less than 20 minutes. He will basically be cutting a muscle in her eye, weakening it, so that it will "match" the weak muscle in her other eye. I've seen a lot of medical procedures in my days, but this one creeps me out the most by far!!! Surgery will be Monday October 5th.

Saturday is Pediatric Cancer Awareness Day. In honor of this day, and in honor of our brave cancer warrior, Matt and I will be going to the Ronald Mc Donald House in Rochester to drop off all of the food items that we collected at the Brady Bash. We decided not to bring the kids because the 6 of us plus all of the donated items would not fit in the van together! I will take pictures for sure! I will also be sending our check to the Alex's Lemonade Stand Foundation this week.

I almost forgot! Here is a cancer fact for today: For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives 30 cents.

And a few more pictures of our weekend

Mickey and Minnie say hi!

My brother and niece Aubrey (could she being any cuter?)

Matt and I working at the stand Monday

Tuesday, September 8, 2009

And Still More Labor Daze Pictures

Getting ready for the parade!

Cara clapping to the beat of the marching band

Brady giving Minnie Mouse a high five!

Eli loved the big drums (well, those and the fire engines, police car, tractors...)

Allie enjoyed a snack while she watched the parade march by

Grandma holding Brady up next to his name on the sign at our stand

More pictures is bringing her camera card over!

I had the chance to meet Robin Walters while working at the stand Monday night. She is the new PR person for a local outreach ministry called Care-A-Van. She wrote an article about our stand and you can read it here

In case you think I've forgotten about my cancer facts, I haven't! Remember, September is pediatric cancer awareness month. Our goal is not only to raise money for this cause, but to raise public awareness about childhood cancer.

Today's cancer fact:Neuroblastoma is a solid, malignant tumor which manifests as a lump or mass in the abdomen or around the spinal cord.

Please be praying for Cara and I tomorrow as we head to appointment #2 with the new eye specialist. Her head tilting continues to be a problem when looking at things in the distance. Thank you for your prayers:)

Monday, September 7, 2009

1260 Cups of Lemonade!

That's right! We sold 1260 cups of lemonade in 3 days! All of our baked goods sold out by the end of today too! Here is a breakdown of our donation:
Stand Profits: $1,624
Donations by mail: $185
Online Donations: $400
Grand Total: $2,209

Matt and I are going to make it an even $2,500 and we couldn't be more thrilled to give this money to the Alex's Lemonade Stand Foundation!

There are so many people to thank...
If you volunteered your time to work at the stand...THANK YOU!
If you volunteered your time to bake something....THANK YOU!
If you donated supplies to our stand...THANK YOU!
If you bought something at our stand...THANK YOU!
If you stopped by just to tell us that you had prayed for Brady...THANK YOU!
If you came by just to make a donation and didn't even want to buy anything...THANK YOU!

This weekend was just another example of our wonderful community coming together to show their love and support. This time it wasn't just about Brady, it was about children we don't know, children we won't ever meet. I know that this money will be used for good, I know that a child's life with cancer will be better because of all of THANK YOU from the bottom of my heart:)

I promise to share pictures tomorrow!!!

Sunday, September 6, 2009

Lemonade Stand Day #2

Hi all! It was another great day at the lemonade stand! Weather just doesn't get much better than was great lemonade weather!!!

I really the think that the stand is a huge success! Many people from the community are stopping by to make donations, big and small, and I've shared our story with several people who didn't know about Brady. I've been touched by several stories shared with me too. There are so many people in our world affected by cancer, that's for sure!

We sold out of all baked goods except for two plates. However when I got home Matt "found" a box of things that he had moved to the basement. Several of my relatives realized that we were low on baked goods and offered to bake tonight:)

Big news!!! We have made $800 in our first two days!!! We are so thrilled at the support of our community and can't wait to send the check off to the foundation. Combined with the online money, this means we have already exceeded our goal of $1,000!!! God is good:)

Here are a few pictures from the last two days...
Our stand

One day to go! Tomorrow is Matt's birthday!!! Happy birthday honey!!!

Saturday, September 5, 2009

Lemonade Stand Day 1!

I'm a tired girl tonight folks, I'll keep this short. I decided to open up tonight and after dropping a 20lb bag of ice on my toes, I got the stand up and running. Thanks to my hubby, my bro, and my mom for all of their help today setting up and keeping things going. And thank you to everyone for dropping off their baked items today! Everything looked delicious:) I just brought up a few baked goods and those sold pretty well. All in all we made about $175. Not too bad considering it was the first night and there weren't too many people there. I took some pictures of the stand and promise I will share them later in the weekend. For now, I'm off to get some zzzzzzs!

Friday, September 4, 2009

Lemon Things Everywhere!

Tomorrow is set up day! My kitchen is already filling up with lemon baked goods and I didn't know it would be this hard to resist sampling a few:) I'm going to be a total sap tonight and tell you I have been weepy today just thinking about what we are doing. It is just a simple lemonade/bake sale, but in my heart it means SO much more. I can't help but think of Alex Scott, the little girl who came up with the idea of selling lemonade to raise money for cancer research. I think of her and all of the other children who have lost their lives to cancer. My thoughts are also on those fighting this disease right who are far away from home, enduring unthinkable treatments, unable to start school next week like their peers. And I sadly think of the children who someday soon will be diagnosed with cancer. Oh how my heart breaks to think of them...

So, what can we do? There is that saying by Mother Theresa about how we all can't do great things in our lives, but we can do small things with great love. In the scheme of life, a lemonade stand with some cupcakes and cookies I guess is a small thing. But I know that there is GREAT LOVE being poured into this project by our family and from everyone who is donating and volunteering. And I want to thank you for showing your great love to this worthy cause. THANK YOU!!!

Okay, just one more piece of sappy/sad stuff I promise!
Cancer fact #4 The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.

Today brought some normalcy back to our house (well, relatively speaking!) The kids all seem to be healthy again, appetites are back, no fevers to be found. I'm holding my breath that it is all behind us and we can fully enjoy the weekend ahead! Brady has started this new love affair with his blankie since being sick. He wants to drag that blanket around all day, and he just snuggles it and says, "My blankie! I love it!" That boy is the best...

I'm thinking of possibly opening the stand tomorrow night during the battle of the bands. If everything goes well with set up and things with the kids are okay tomorrow, then I think I will. We are right near the stage, so I think people might like having some lemonade and dessert while enjoying the performances! Stop by and see us if you are there!


If you are someone dropping off baked goods to my house tomorrow and need directions, please email me at

Thursday, September 3, 2009

And Then There Were 3...

So, the virus among us took down two more today. While Eli is feeling great today, Brady and Cara both awoke with raging fevers this morning. It seemed they were on the verge of throwing up all day, but they never did. They were just very lethargic, little appetite, and had high temps all day. I haven't sat around this much in years! Most of my day was spent holding a hot child on my lap watching cartoons. My poor babies...I could tell that they felt terrible! Thank goodness my mother in law was here...she was a tremendous help while I had snuggle duty.

Sadly I had plans to go for a pedicure and out to dinner with friends that I had to cancel. I was bummed, but knew I was were I needed to be. I'm a little behind now on Lemonade Stand stuff, but hopefully I can catch up!

ATTENTION ALL VOLUNTEERS! I found out today that our stand while be IN the Triangle Park. If you are looking at the gazebo steps, we will be on the left side of it. I have never ever seen a booth there before, but apparently there is only one performing stage this year, so they are moving things around a bit. At first I was disappointed to not be with the other food booths, but maybe we will get a lot of customers who are watching the entertainment.

I want to thank those who are sending donations and those who are donating online! I'm touched beyond belief at your kindness. Remember that 100% of money donated will go directly to the foundation which funds research grants aimed at improving treatments for children with pediatric cancer. I think I should replace the words "children with pediatric cancer" to "children just like Brady." Our fundraising goal for this project was $1,000...we have already raised $535!!! Couldn't be more thankful...

Cancer Fact #3 Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

Please be praying that the kids will feel better for this weekend and that Matt and I will be healthy so that we can get the stand up and going. Be praying that we will be able to share Brady's story with someone and be able to witness about God's grace and provision during life's trials. It is awesome to think of what one little lemonade stand could do!!!

Wednesday, September 2, 2009

4 More Days!

This weather! Isn't it just the best? It seems as though sunny skies will be sticking around through Labor Day...YAHOOOO!!

I wanted to take the time to acknowledge some wonderful people who have sponsored our lemonade stand in some way. First of all, my friends Rachael and Rosalie who each donated a big dispenser for the lemonade...thank you girls:) Rachael also sponsored a few odds and ends for the stand, like helium for balloons and the cups! Culligan Water Systems in Akron is our water sponsor and we couldn't do the stand without their amazing, reverse-osmosis water (did I say that right Grandpa?) THANK YOU CULLIGAN!!! Thank you to Joe Capan from Signmatic in Akron who has donated an awesome sign for our stand! We will be able to use it over and over again---it is wonderful!! Thank you to ZipTor Monogramming in Batavia who today offered to embroider the aprons for us!!! Of course we couldn't do any of this without our wonderful volunteer workers and bakers!!! I LOVE our community!!!

Here is my #2 fact about pediatric cancer (then I promise I'll move onto some pictures!)
On average, one in every 4 elementary schools has a child with pediatric cancer.

I'm pleased to report that so far we have no more illness in the house. Oh how I pray that that bug left us as quickly as it came! The kids had playgroup this morning, which grandma took them to and of course she ventured solo into Wendy's (at lunchtime!!!) I had some awesome one on one time with Allie...

And later tonight, enjoying some ice cream