Tuesday, August 31, 2010

William's Story

In honor of Pediatric Cancer Awareness Month (September), I'm sharing with you the story of a very special little boy named William. Recently our family met with William and his family at Strong Museum. It is my hope and prayer that after hearing his story, you will feel led to support a charity such as Alex's Lemonade Stand, with the goal of finding a cure for pediatric cancer.

Here is William's story, told by his mom Kristie.

After seemingly uncomfortable, with a lot of GI symptoms, odd swelling issues and a dramatic change in his demeanor (including constant night wakings and limited naps) since 3 months old, we were told William had food allergies around 5 months old. We were seeing a pediatric gastroenterologist who was confident of the food allergy theory, despite never doing any blood work. He had blood in his stool for over 2 months. I was nursing at the time and ended up omitting all sort of foods, since all formulas we were prescribed only made him worse.

Finally, I made an appointment with an allergist (despite my pediatrician saying it was not appropriate due to his age - the gastro would care for allergies at that age). This allergist entered the room, saw my puffy baby and was very alarmed. She called the pediatrician immediately and insisted on ordering a bunch of blood work and some x-rays, thinking it was cystic fibrosis. The next day the pediatrician called saying he needed to see William immediately, because his blood work showed dangerously low levels of blood proteins. He admitted us to the hospital, excepting the need for a blood transfusion.

We entered the hospital on a Friday afternoon thinking William's food allergies would be pinpointed once and for all. A new pediatric gastro saw him at the hospital who, for the first time, thought William was extremely swollen with edema (we had always been told he was just a big baby - nearly 24 pounds at 6 months). After thinking his liver was enlarged, he ordered an ultrasound....which found a 10cm "mass." The next day, the oncologist at our door was calling it a tumor and a few hours later after a CT, it was cancer. He was diagnosed with stage 3-Intermediate NB. The local docs said it was inoperable and would require 8 rounds of chemo and then they would evaluate to see if it could be removed.

After 2 weeks hospitalized, William and I walked out the hospital here to get in the car and drive to Memorial Sloan-Kettering for a second opinion. We saw Dr. Modak and Dr. LaQuaglia. They agreed it was inoperable because it was around every vital blood supply and encasing so much, especially since he was so small and the tumor was so big. They said we needed to start with 2 rounds of chemo and return for scans. We followed and in February, Dr. LaQuaglia said he was concerned the chemo created a lot of inflammation and calcification, and so it was time to remove it. Feb 19th William had his resection surgery, 9 hours with Dr. L. He removed all the tumor, but unfortunately, that was just the beginning of many, many serious complications. We expected 2-3 days in PICU at Presbyterian and another week at Sloan, but William ended up staying in the PICU for 12 days, and another 3 weeks at Sloan. He ended up having a splenic infarction, but that was not discovered until nearly 2 weeks after surgery. That created a number of infection risks and made his platelets go to over 1.7 million - very dangerous levels. He had a clot to his good kidney, one in his arm, and one in his groin. He had a lot of pulmonary complications and all sort of GI problems and was put on TPN (total parent nutrition-William receives all nutrition in liquid form through his central line) a week after surgery, when he was still intubated. We ended up fighting to get to leave Sloan, since they did not have pediatric specialists to help William (since they are a cancer center with a relatively small peds unit ...all the specialist only work with adults).

Anyway, needless to say, the NB has taken a back burner with all the other problems we are dealing with. Odd to think, huh? William vomits on a regular basis with a very traumatic, severe gagging. It's a struggle everyday to get his meds in. His entire GI system is a mess. He's had all sorts of scopes and procedures to try to help the situation and has had some pretty serious problems handling anesthesia through all the procedures since his resection. The doctors here feel as though the hundreds of surgical clips that were put in his abdomen as part of the resection is causing a lot of complications with scar tissue that is constricting his stomach and intestines.

William will head to Sloan later this month for scans and then will return home for surgery to hopefully place a feeding tube allowing him to be fed directly into his intestines. When we met William last week, I was instantly blown away by how wonderfully functional he was. That might sound terrible...but considering he has never taken food by mouth and is connected to IVs for several hours a day, I was expecting a pretty passive and sick looking boy. Imagine my surprise when I met a very happy, filled-out, and active little boy.

He is the adorable sweetie next to Allie. His big brother Nicholas (equally as sweet and adorable) is on the top step with the big smile! For part of our day he tottled around with a tiny backpack on that carried his bags of fluid that was connected to the central line in his chest. All the while he wandered through the museum exploring and having fun with all of the other kids. It brought me back to our days when Brady was unable to stand because of the tumor in his spine. I remember Matt and I carrying him around the same museum...I remember the feelings of wondering if he would ever be like the other kids. That feeling hurt, and it still hurts even though we are much further down the road.

The good news is that both of our boys have survived the cancer that at one point had invaded their bodies so aggressively. However both of our families know that the battle doesn't stop with No Evidence of Disease in William's case or just a tiny bit of stable tumor left in Brady's case. In both cases, our sons will deal with complications for some time to come, and always the chance of relapse.

When your child has cancer it is easy to think that it is all about you, you are in this fight alone, and that no one could have it as bad as you. Sadly, we have learned that there are so many children like Brady and that so many are in much worse of a situation than he ever was.

That is why we continue to do our small part to help raise awareness and funding. Please consider joining us on Monday September 6th from 10am to 8pm at our lemonade stand as part of Oakfield's Day in the Park Celebration. If you can't come, please consider making a donation by clicking on the Alex's Lemonade icon on the right.

Thank you, as always, for standing by us in our fight!

Awareness Month Begins

As soon as I met her, I knew her.

She is a mom of a little boy with Neuroblastoma, just like me.

I had only emailed her for a few months after having been matched up to be her mentor through the Alex's Lemonade Stand Foundation's mentor program. We were matched up because we live only a few hours apart and both of our young sons had been diagnosed with Stage III Intermediate Risk NB.

I knew of her son William's story and a little bit about their family, but after spending half of a day with them at Strong National Museum of Play, I felt like I knew her heart...because so much of her heart was just like mine.

When two cancer families meet it is like connecting with an old friend. You bond over similar experiences, tear up when you can literally feel the agony that they have experienced because you have too, and you instantly feel drawn to their precious child who has suffered as your child has. It is terrible to have to meet a friend in that way, but the connection is deep and beautiful.

September is Pediatric Cancer Awareness Month. We are in full swing at our house as we prepare for our 2nd Annual Alex's Lemonade Stand. The focus of Pediatric Cancer Awareness Month is to raise awareness and funding to find a cure. There is no better way to raise awareness than to share the stories of children who have battled cancer. I can't make you feel what it felt like to go through that experience, and it's impossible to know how it feels to deal with survivorship issues on a day to day basis unless you are dealing with them yourself. But I can do my best to tell the story of a beautiful little boy named William and hopefully cause you to realize that he could be your son...his battle could be your battle. I hope and pray that his story will touch your heart and lead you to help us in this battle.

Please stop by tomorrow as I share William's story...

Sunday, August 29, 2010

What a Bunch

Between my brother and I we have a bunch of toddlers & preschoolers (sniff sniff…4 of them officially start preschool next month!)

There are 6 crazy kids ages almost 4 and under in our group and I couldn’t love them more. Aubrey will start Kindergarten first next year, the triplets the year after that, then Allie and Natalie the following year. It is amazingly cute to see  them all together, and it is my hope and prayer that they will always be close.

Today we went on a picnic to celebrate my brother’s birthday. Check out this bunch of cuties.



And I have to share this picture of my niece Natalie. I adore her and her Cinderella-blue eyes!

DSC_0137Happy birthday brother! I’m sure you would agree that our children are our greatest gifts ever:)

Friday, August 27, 2010

Family Time


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ps…The fashions in today’s blog post are provided by daddy. Socks with crocs?

Tuesday, August 24, 2010

I Have Triplets...

Sigh. My sister and her family are back on the road to Minnesota. We miss them already, but I was happy to realize that Christmas is just 4 months from tomorrow and we will be seeing them again before we know it! Now that I have you all thrown into a panic because Christmas is just 4 months away, I'll try and give you a laugh to ease your anxiety!

Today I was checking out at the grocery store when the funniest thing happened. I was alone, trying to grab a few things while the kids napped and grandma Sandy graciously allowed me to try and catch up with my life! As I was waiting to check out, the lady in front of me was trying to pay the cashier while dealing with her two boys who were misbehaving. She was flustered, the cashier was flustered, and I was grateful to not be the parent of the two misbehaving children. Once that poor mom left, I approached the cashier for my turn to check out. The conversation that followed went something like this...

Cashier (who was all of 19 and had a rather dry personality): "I so can't handle screaming kids."

Me: "Yes, screaming kids can be tough."

Cashier: "That's why I have a cat. Well, I have a dog too, but my mom takes care of the dog. And the cat is my job, and she just sits there."

Me (in all honesty, I was just daydreaming at this point): "Oh yeah, I've heard that cats are pretty low maintenance."

Cashier: "I mean. I don't even know if I want kids. I can't even imagine. Like, maybe someday I'll have kids, like in 10 years or so."

Me: "Sounds like you have a plan."

Cashier: "Yeah, but with my luck, I'll have triplets!"

Me: (in a very matter-of-fact tone) "I have triplets."

Cashier: I mean...wait! YOU HAVE TRIPLETS!!!"

Me: I sure do. (of course at this point she needed a proof in the form of the picture that I pulled out of my purse.

Cashier: Wow! I can't believe I said that to you and then you just happened to have triplets!

Me: That is really weird!

Cashier: Have a good day.

That was just one of those funny life moments! I truly hope for her sake that she doesn't have triplets. Not because they aren't fantastic and wonderful, because if you have been reading for any length of time, you know that I think my triplets are just the best. More because if she can't handle two screaming boys for 2 minutes at checkout then she might want to stick with cats.

Sunday, August 22, 2010

We Love Family Time

Ahhhh, if only every week could be “family visiting from Minnesota week!” We have packed so much fun into this week and it is sad to see it coming to an end! Today’s plans were supposed to be outside, but due to rain, we ended up just hanging out at our house for dinner.

While the kids did this…


and this…

DSC_0002and this…


The adults did more of this…


Good times! Tomorrow we are celebrating my youngest nephew’s birthday—even though it isn’t until September. It is going to be great to give him some great birthday memories in New York:)

Friday, August 20, 2010


We have a very special tradition in my family. Each and every year we spend one of our summer day at Seabreeze Amusement Park in Rochester. As our family changes and grows, we adjust our tradition, but still manage to have a great time.

So off we went yesterday, with 7 adults, two elementary-aged boys, 4 preschoolers, and 2 toddlers! Our day was spent splashing in the water park, waving to smiling kids as they went round and round on rides, and ducking rain showers. It was a GREAT day!

getting our wristbands


splashing with cousin Aubrey




Cara is our water-baby for sure!




Time for rides!


Cruisin cousins Aubrey and Cara


Eli and Brady don’t like tailgating!


Littlest cousin, biggest cousin!



My kids just loved this ride!


The kids thought that these fighter planes were super cool. Not sure how I feel about these pictures of them holding guns:(


Is it my turn yet?


Can you hear me shouting, “Allie, get your hand out of the water!”



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The kids’ first roller coaster ride!


Who’s that tall guy on the kiddie ride?



Matt and I are always especially struck with emotion on the days like yesterday, when we are doing something that we do once a year. It is so easy to recall the previous years. Two years ago we were at Seabreeze when I was pregnant with Allie. I distinctly remember carrying Brady on and off of the rides since he wasn’t walking. I remember looking at other kids running around and feeling so sad that there was something wrong with our son. Then last year Brady was walking, but was still so cautious, unsure of himself, and afraid of the world around him. He had been through so much and wasn’t quite ready to completely let go and have a ball.

Then there was this year.


I’m so grateful for the daily reminders that God gives us of His great mercy, healing, and love. Reminders in the form of jumps down a step, splashes in the water, giggles with a brother or sister, and gorgeous smiles while riding in a boat. Thank you God for each and every one.



Tuesday, August 17, 2010