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.