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.

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 life...it'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.

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

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 tomorrow...mom 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:)

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 now...kids 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!

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

6 Days Until Our First Lemonade Stand!

Our little Eli seems to be on the mend. No more throw ups today, although he barely ate much of anything (MnMs for lunch and bacon for dinner:) I let them eat whatever sounds good when they are sick! No signs of anyone else coming down with it...yet.

Only six days left until our first official Alex's Lemonade Stand. Today I printed off a bunch of things I needed for the stand. I picked up aprons yesterday and if I have time, I want to try and get them embroidered. We have 17 people baking for us...isn't that awesome? For many, it is the first week back to school and I appreciate so much that people are willing to give of their "final week of summer."

Did you know that September is pediatric cancer awareness month? Now you do! I'm going to try and give you a fact about pediatric cancer every day this month. I'm not doing this to scare you or depress you. I'm doing this because awareness is a vital part of early detection and a huge part of fundraising for research money.

Fact #1 On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.

Now onto some pictures. Matt got an amazing new camera from his parents for his birthday (by the way---his birthday is Labor Day!) I'm having SO much fun learning how to use it. I couldn't have better subjects to take pictures of. Well I guess they could stand still a little better, and perhaps all smile at the same time...

Eli Matthew




Cara Kathleen




Brady Andrew




Allison Elizabeth