Relay for Life, Sam & Maddy Update

Madelyn
This morning, Maddy and I went to see Dr. Smith, her pediatric urologist, for a checkup and ultrasound. I had secretly been hoping that the ultrasound would show that her kidney had magically repaired itself, but unfortunately, the results were the opposite of what we had wanted. Her kidney is now at 55mm - about triple the size of her right kidney - and now her ureter has become enlarged as well. Yesterday, she was crying in pain for about 30 second, and then urinated and stopped crying, so we are thinking that it is beginning to be painful for her as well. So, tomorrow Madelyn is going to go for her 4 month check-up, and then off to the hospital for some pre-op testing. Her surgery will be scheduled as soon as we get the results; Dr. Smith would like to get the surgery done as soon as possible. We're obviously nervous about our little girl having surgery and being put under anesthesia, but we're also relieved that we are finally going to get this done, and that it will be one more medical issue that we can put behind us.

Sam
Sam began chemo last Friday, and unfortunately did not do well this round. By Monday, he was so uncomfortable that he called Dr. Rubin, his oncologist, late Monday night, and Dr. Rubin cancelled the rest of the chemo for this round. He has still not recovered - he spent most of yesterday and today in bed. He has had no appetite or energy. Dr. Rubin did some blood tests, which didn't reveal anything, so we are all thinking that it is a combination of the chemo, blood thinners, and pain meds. He is still on Dilaudid and a high dose of Oxycontin. So per Dr. Rubin, we are going to wait until Sam has weaned off of these meds and feels normal before discussing chemo again. We will talk with Dr. Rubin later this week to get more information on what he thinks is the best course of action.

On a happier note, Sam was able to go to the MCHS Relay for Life this Sunday, which raised $13,000 for cancer research! He had a blast visiting with his students and fellow teachers. His mom, brother, and nephew came out to see him as well, which he loved. We were very proud of him for making it out and doing the Survivor Lap.

Just a quick note to all of our friends and family: Sam really LOVES visitors, texts, emails, and phone calls from everyone! He apologizes for messages he hasn't returned, but know that he loves reading or listening to them all, and they really brighten his day. Please keep contacting him as much as possible. I know that everyone is very busy, but we always welcome visitors as well - friends and family have a way of getting Sam out of any kind of funk he might be in. Our doors are open!

And finally, we are SORRY for any thank you notes, emails, or phone calls that we have yet to make. We have received some amazingly generous gifts, and we are very touched by everyone's thoughtfulness. We also apologize for anyone whom we have forgotten to email, call, or text back. Please know that it is not deliberate, and that we appreciate all of it!

Walking, Rolling, Somersaulting...

So far, 2013 is coming along very well! Here are a few updates:

Sam
Sam has been doing wonderfully at home! He has almost weaned off of his pain medication, and is walking around the house without his walker now, although he does like having it close by. He goes to physical therapy 3 times every week, and it seems to be helping him tremendously. Tomorrow, however, he does start chemotherapy again. He will most likely finish up the last 5 rounds, to make 12 rounds total. We are hoping he will be finished with all of this by the end of April. During chemotherapy, Sam does love having visitors, so please feel free to come by - please just call beforehand to make sure that he not having an exceptionally bad day.

Madelyn
Maddy rolled over for the first time on Saturday, January 5th, and has not stopped since! Anytime you put her down on her tummy, she rolls over onto her back. She seems like she is very close to rolling the other way, too! She is sleeping wonderfully- usually falling asleep around 8 or 9pm and sleeping until 7:30am. Every now and then, she gets up around 4am for a feeding, but not every night. We also stopped swaddling her, so she is sleeping in a sleep sack. We will be going in a week to her urologist to have another ultrasound done on her kidney. 

Now that I can roll over, I love tummy time!

I also love my exersaucer!

Taylor
Taylor begin gymnastics last week! She loves it! She was in a Monday evening class, but got into a Saturday morning class that will begin this weekend, so she will be at a new place. We are really happy that she is involved in a class that will hopefully teach her some great social skills and get her moving. 

Ready for gymnastics!

Trying on mommy's shoes!

Cheryl 
I know many people have been asking, so I just wanted to let everyone know that I will be returning to work on Wednesday, February 6th. It's going to be hard being away from my family during the day, but I am looking forward to seeing my students and coworkers again! 

Welcome Home, Sam!

Well, what a poetic way to end 2012 - Sam came home on New Years Eve at around 1:00pm. I have not been putting details of his surgery or time away on this blog, so here is a recap:

On December 2nd, Sam and I flew to Baltimore. We went to the Ravens/Steelers game, dined at Kona Grill (delicious!) and had massages at 921 Salon & Spa. It was our "date" before his surgery - we wanted to have some time together to relax and have fun because we knew we had a long road ahead.

On December 4th, we took a cab to Johns Hopkins at 5am to get Sam checked in for his first surgery. The surgery took about 14 hours, and they successfully removed part of the tumor, and began building the cage to replace the vertebrae. I left that day to come back home to be with the girls.

After the first surgery, Sam developed a blood clot in his lung and was having trouble breathing, so they put him on blood thinners and gave him a breathing tube. His second surgery was supposed to be on December 7th, but it was delayed because of these complications.

On December 7th, my sister, Taylor, Maddy, and I flew to Baltimore to visit Sam. We spent the weekend taking turns spending time in his room, since children are not allowed to be in the hospital. It was a wonderful trip and the girls did great on the plane!

On December 11th, Sam went in for his second surgery. During this second surgery, they removed the L4 vertebrae and tumor, and completed the cage and synthetic vertebrae. Sam developed another blood clot, so they put a mesh screen in his leg to keep them from traveling to his lung. He also had some trouble with swelling in his stomach, so a tube was put in his nose down to his stomach to keep it empty. He was very uncomfortable. I came to visit him for the day on December 14th, and during this time he was able to get the tube taken out and felt much better after that! He was moved to the inpatient rehab center at Johns Hopkins on the 22nd, where he began a regimen of intense physical and occupational therapy.  I visited him again December 26-27 and he was already walking with a walker, and practicing going up and down the stairs.

He came home on December 31st and has been adjusting to being back home again! We missed him so much and are so happy to have him back here! He loves spending time with the girls, and is amazed with how much they've both grown just in the month that he was gone. He has been doing great with recovery. He gets around the house with a walker, and can go up and down the stairs (very slowly!) on his own now. We are very proud of him and his strength and determination.

Thank you so much to everyone who has helped out during this past month. We want to particularly thank Sam's mom, Gloria, for staying out there for the duration of his stay at Johns Hopkins. We are extremely thankful and grateful for the love and support shown to us by our family & friends (and even complete strangers!). I can't say it enough - thank you, thank you, THANK YOU.

What can I say about 2012? Many of the events of this year have shaken us and left us feeling very vulnerable. This holds true not only for the things that went on in our lives, but in the lives of our friends and family, and in the news as well. However, we were given a precious gift in September when our daughter, Madelyn, was born, and she and her easygoing, happy personality have been the biggest blessing. We also feel that we've been shown so much compassion, love, support, and strength by others that we will leave 2012 taking only that with us. So we begin 2013 with the will and determination to rebuild what we've lost and learn from the love that has been shown to us during this past year.

If I were to pick a theme song for 2012, it would be John Mayer's "Heart of Life", purely for these lyrics:

"You know it's nothing new, bad news never had good timing
But then the circle of your friends will defend the silver lining.
Pain throws your heart to the ground, love turns the whole thing around.
No it won't all go the way it should, but I know the heart of life is good."

Happy New Year everyone! May God bless everyone with health, happiness, and joy in 2013. 

Merry Christmas!

 Merry Christmas from our family to yours!

Decorating the tree!

Seeing Santa at GymQuest. She was a little nervous around him at first!

Me, Kim, & Maddy

Some of the Forst/Partynski cousins with our Grandma

Christmas Eve!

Kisses from Bapa

Getting ready for bed with Mar!

The girls with Aunt Krystle

Maddy is 3 Months Old!

Madelyn is now 3 months old! She continues to be the happiest, most easygoing baby ever. She has been sleeping very well, usually going down between 8:30 and 10:00, waking up around 3:00 for a feeding, and sleeping until 7:00. She's been getting up slightly more often lately, because she likes to bust out of her swaddle and then cry because she isn't swaddled. She also has a little cold, so that's been bothering her too. 
She has discovered her hands, and they are her whole world now. She stares at them, touches her face, and tries to hit any toys dangling by her. She once grabbed her own hair and screamed in pain, not knowing that she was causing it.
She still spits up like crazy, despite being on Prevacid. Taylor and I call her the Spit Up Queen. She has had days where I had to change her clothes 6 or more times. 

Maddy likes...
Splashing in the bathtub, listening to her sister talk, smiling, playing on her activity mat, playing in her aquarium bouncer, her hands, "talking" with people (hearing people mimic her coos, and cooing back), swinging in her swing, being swaddled, cuddling, listening to music.

Maddy dislikes...
Tummy time, being cold, being sick... that's pretty much it! 

Much to Celebrate!!

Last weekend, our beautiful daughter Taylor turned 3! We can't believe how fast the time has gone. We celebrated by going out to Red Robin (our yearly tradition), having a few of her neighborhood friends over for a "sleepover" party, and combining her family party with Madelyn's Baptism! It was a busy, but very FUN, weekend!

Happy Birthday, Taylor!
Here are Taylor's current stats:

Height: 38 inches (73%)
Weight: 36 lbs (90%)
Shoe size: 7
Diapers: Pull-ups for nighttime and nap
Clothing: 4T

Taylor knows all of her colors, all of her letters and sounds, and can count to 25. She can dress herself (pants, underwear, shoes, and socks - she still needs help with shirts), and has an amazing vocabulary. She asks lots of questions and is very interested in the world around her. Potty training is going ok, she is in underwear for the day but then waits to go #2 until she has pull-ups on at night. This is very frustrating to us but the doctor says it's normal! Overall, she is doing very well developmentally!

Taylor likes:
"The Little Einsteins", singing, dancing, pretending she's in a gymnastics show, "Dora the Explorer", Disney princesses, family movie nights, "Frosty the Snowman" (the old-school cartoon!), reading books, playing on mommy's iPhone, playing on her new swing set, playdates with friends, painting, bubble baths, cutting with scissors (a new skill!), nature walks, being a big sister, helping mommy cook and clean, pretend play of all kinds, and playing with friends.

Taylor dislikes:
Elevators (terrified of them!), eating dinner, being cold after a bath, the light from the cell phone tower that she can see from her bedroom window (don't ask! We aren't allowed to leave her window open at night!), spiders, scary Halloween masks, trying new foods, going in time out, and having the timer set for dinner (she takes too long, so this is our last resort!).

Sisters!

At Red Robin for her birthday dinner!

Decorating cookies at her "sleepover" birthday party!

Taylor and Gianna decorating cookies

The whole group decorating cookies!

Getting ready to watch a Dora birthday movie!

Getting sleepy!

Getting ready to blow out her candles with her cousin Haley!

Taylor and Aunt Kim playing video games

 Madelyn's Baptism & 2 Months Old!

We had Maddy's Baptism on November 25th at St. Ann Catholic Church in Channahon. Her godparents were her Uncle Mark and her Uncle Eric. The ceremony was done during mass, and we had a small party afterward. We were so happy to be able to do this between Sam's chemo schedule and his surgery. Maddy was an angel, and was so good during the Baptism.

She is now 2 months old! Here are her current stats:

Height: 23.3 inches (77%)
Weight: 12 lb 3 oz (78%)
Head Circumference: 39.4 cm (60%)
Diapers: Finishing up size 1's, about to move to size 2's!
Clothing: 6 month

Maddy is a very smiley baby. She loves cooing and interacting with anyone around her. She is usually her happiest right after a nap. She sleeps very well, usually from about 10-3 and then a couple of hours before and after. She is a VERY easy-going baby! She does have reflux, like Taylor did, but Prevacid seems to be helping with that. She hates tummy time, and hates getting out of the bath and being cold!

She had a few tests done on her left kidney, which determined that her kidney is having trouble draining, but that's it's functioning perfectly fine. We will continue to follow up and monitor with ultrasounds. Her pediatric urologist, Dr. Smith, says that he is concerned, because it is very large, but he wants to put off surgery as long as he can without compromising the health of the kidney. 

There will be more Baptism pics to come! Here are a few that we have:

Ready for her Baptism!

Our beautiful angel

With Uncle Eric

The Pavelka clan

With Bapa and Mar

With Grandma G

Happy Thanksgiving!!

Although the events of this year have been less than ideal, we have a lot to celebrate and be thankful for. We are so thankful to be blessed with our two beautiful daughters, Taylor and Madelyn. Both girls have given our lives greater meaning and have shown us so much joy. We are thankful for our wonderful friends and family, who have stood by us through our toughest times and who have made us smile even on days when that didn't seem possible. We are thankful that we have been reminded how wonderful, kindhearted, and generous people can be, even those whom we have never met. We are thankful to have access to exceptional medical care; we know how lucky we are to be working with doctors and nurses who will research and seek out every option and who truly care about their patients. Overall, we are thankful for all of the opportunities that we have been given this year to see the good and feel the love that is around us. Life gives you challenges for a reason. 

Waking up with our girls on Thanksgiving morning!

Maddy and Bapa

Maddy with Aunt Krystle, Aunt Kim, & Uncle Eric

The girls with Aunt Kim (one of the best Taylor smiles ever captured on camera!)

Maddy & Aunt Karen

Our little Maddy