Tuesday, March 5, 2013

Seeking Sponsors for a Fundraiser Auction Benefiting Liam, A Neurofibromatosis Warrior!

Hi, everyone! I hope all is well! I am currently putting together a fundraiser auction for my son, Liam, who was diagnosed with a condition called Neurofibromatosis when he was just over one year old. This disorder causes tumors to grow in the brain which can cause a variety of health issues. We found out then that he had  two tumors, but they were not growing and would be monitored closely by his neurologist. However, in September everything changed. His tumors began to grow and, at three years old, he began chemotherapy to help stop growth and shrink the tumors. He has been going through treatment since October, with two hour trips to and from Atlanta each Friday. 
Liam Playing with Papa and Brother!
He was actually doing pretty well with treatments and we were hopeful a few weeks ago when he got his MRI. A week later we found out that the tumors were not shrinking, but, in fact, they had grown, almost doubling in size. We just began a new chemotherapy that will be much more intensive, with trips to Atlanta each week for at least 6 months. For this reason, we are reaching out to companies, representatives, and brands to help support Liam in his battle against Neurofibromatosis. 

We are currently looking for sponsors to participate in an online auction to help raise money for Liam's treatment and expenses. We will make an auction via my Children Teaching Mama Facebook page with all proceeds going towards Liam's expenses.The auction will also be advertised through several other blogs with PR1-PR4 ratings to increase interest and viewership. In addition, we will constantly advertise via Facebook, Twitter and Google+. Each sponsor will be featured in a photo with their name, website link and any other information you would like included. As a PR3 blog with over 40,000 combined followers, I know sponsors will be pleased with the advertisement received.
Being Silly With Big Brother!
If you would like to be a part of this worthy cause by donating items to be auctioned, please email me at childrenteachingmama@gmail.com or you can even donate money by clicking here. If you know someone else who might be interested in sponsoring, please feel free to share this information with them. We already have some awesome auction items, including a Sibu Beauty Spa kit worth $125, a $50 Novica gift card, $100 My Little Legs gift card, Zipz Shoes, and many, many more! This is going to be a great auction!I often write about Liam on Children Teaching Mama, but we have also created Liam's own blog. Life With Liam and Facebook page, so friends and family members can keep up with his progress and support his fight with NF. 

Please let me know if you have any questions at all about the auction. Thanks to all who have already donated in some way. We really do appreciate you and thank you so much for your help!

Monday, February 25, 2013

The Beginning of Our Neurofibromatosis Journey

This weekend I was going through old posts on my other blog, Children Teaching Mama, and came across one I wrote quite a while ago. This was the first post I wrote about Neurofibromatosis, before Liam was even diagnosed, and we were making our first appointment with a Neurologist. Here's the beginning of our story...

So, a few days ago I posted an article on birthmarks just because they were on my mind. I started doing some research and when I came to the research on cafe' au lait spots, those slightly darker random shaped markings, I realized that Liam has several of them. Many of the pages suggested contacting your pediatrician if your baby has more than 5. When I stripped Liam down, he had 14 in all so, I was worried out of my mind. The next morning I called the dr. and scheduled an appointment for this afternoon. Cory came home to take Liam and I stayed home with the monkey. It turned out that the little stinker had a sore throat and an ear infection!! Just like Josiah, Liam rarely cries these days and has become a mellow happy baby so, it is impossible to tell if he is sick unless he is coughing or snotty. Josiah constantly had ear infections as an infant until he got tubes put in his ears a little after a year old, but we often had no idea he even had one until going to a check-up. My boys are just like their Papa in that aspect- never complaining and happy go lucky. Also, the doctor confirmed that Liam exhibited several symptoms of neurofibromatosis. There are several signs and symptoms of neurofibromatosis in addition to the cafe' au lait birthmarks:
Sleeping soundly through his brother's loudness
 (There is one cafe au lait spot to the left of his belly button, right on the side.)

  1. two or more neurofibromas (they are like cysts that grow on the skin and on nerve endings)
  2. freckling in the area of the armpit or the groin
  3. two or more growths on the iris of the eye (known as Lisch nodules or iris hamartomas);
  4. a tumor on the optic nerve (called an optic nerve glioma)
  5. abnormal development of the spine (scoliosis), the temple (sphenoid) bone of the skull, or the tibia (one of the long bones of the shin);
  6. a parent, sibling, or child with NF1.
The doctor found that he had the freckling in his armpit and I am pretty sure there is a spot on his groin, too. His head also measures big, in the 90th percentile, though the rest of his body is much smaller.
Although neurofibromatosis is a genetic disorder, in 50% of cases it occurs when no known relatives have had it. No one in our family had it before, but that apparently means nothing. I also had an amniocentisis when I was 15 weeks pregnant, but I don't believe they tested any genetic disorders, only chromosomal. I will definitely find out tomorrow.
Nothing is definitive yet, but all signs point towards Liam having this genetic disorder so far. Liam has beaten the odds so many times already that it's hard to believe he really has it so, only time will tell. When I had my first ultrasound I was told Liam's neck (or nuchal translucency) thickness was well above average, a very good indicator of Down's Syndome or other chromosomal issues or a heart defect. After weeks of waiting, seeing a specialist and finally getting an amnio, results showed that Liam was just fine. What a relief that was! So, after thinking I was miscarrying, thinking something could be wrong,  having placenta previa, then having a placental abruption and delivering early, Liam's lungs not being fully developed and having to be intubated, and him showing signs of hearing loss and being just fine, I have to believe in miracles. My little man has been through so much already that even if he has this I know he will be just fine. We will support him in any way possible. If he has learning disabilities, other disorders, cancerous growths, or any other possible symptoms of neurofibromatosis, we will deal with them. I'm just happy he's here with us today and am thankful for each and every moment I get to spend with my boys. All of this definitely makes me rethink the possibility of returning to work in the near future! We'll revisit that thought this fall.
Anywho, I'll keep everyone updated on the prognosis. We were given a list of neurologists today and I will make an appointment in the morning. Hopefully we can get the genetic testing done asap! I don't think I'll sleep a wink until I know for sure.
In his jumparoo for the first time this week! He didn't know what to think!

Wednesday, February 6, 2013

Support a Great Cause: Yarn & Monetary Donations Needed For Madison Health and Rehabilitation

Madison Health and Rehab is a 67 bed skilled nursing and rehabilitation facility, located in the beautiful town of Madison, Georgia.  

We have a group that meets weekly called the Mad Hatters, this group of Staff members and residents work on making hats for pre-mature babies and hats for nursing home residents.  We are expanding our projects to include Hats for the Homeless, The Linus Project and Crocheting for Cancer.  Both projects are state wide and items will be distributed in the Northeast Georgia area.  

We are asking for help in the form of donated yarn, gift cards or monetary donations.  Any amount is greatly appreciated.  

For more information please feel free to contact Joanne Wrenn or Katrina Rowland at 706-342-3200 or madisonhealth443@bellsouth.net

Madison Health and

2036 S. Main St.
Madison, Ga 30650

Sunday, January 27, 2013

Liam Update & Happy New Year

I've been meaning to update everyone with a new post for a while now and thought now would be the time. Liam is out shopping with Grandma and Josiah is playing games on my iPad, so all is quite at our house. We had a wonderful Christmas filled with happiness, joy and travelling. We managed to spend the holidays with all the grandparents, so the boys were very excited. Josiah wanted Skylanders more than anything and has played with his game ever since. Liam asked Santa for a Transformers Car, which took Santa a little while to figure out, but finally deciphered it was a Cars transforming toy that turned into an airplane. Phew!
We went to see Santa!
Just two weeks ago Liam had his check-up MRI and we were hoping for some good news. However, last Friday, at his weekly chemo appointment, Dr. Cavellari told me the bad news. Liam's tumor, has grown in size... not just a little, but it has almost doubled in size! He told me a few reasons this could happen:

1. When chemo begins, nearby tumor pieces tend to clump together.
2. This specific treatment just isn't working for him.

So, what is the next step? Well, we changed the treatment over to another form of chemotherapy. Cory took Liam in this past Friday for the first dose and found out all of the details. Apparently, it is about as strong and has many of the same side effects as the vincristine he was on before. There is a small chance he will lose his hair, BUT the doctor thinks he may not since he didn't with the last treatment. Liam has absolutely refused to get his hair cut and pitches a fit when we walk into Great Clips, so we have to figure something out now! Any ideas?

Since Friday, Liam has gone non-stop, so I am pretty sure he has not suffered any side effects so far! Knock on wood! This treatment will be much longer-- at least 6 months going every Friday. However, when they inject the medicine into his port, it is very fast. No sitting still for an hour! Woot! I'm not looking forward to all of that driving, but really hoping and praying this will do the trick and we will be done with chemo once and for all.

Thanks for all the warm wishes, prayers and the donations! This has really helped us through everything and we appreciate it more than you will ever know. Happy New Year, everyone!

Friday, October 26, 2012

All Is Seemingly Back To Normal This Week

All is well in our house and everything is seemingly "normal" again! What a week Liam had with his pneumonia. Luckily, his antibiotics and shots from the doctor helped him and his back to his old self again. I finally heard back from the nurse and Liam is now scheduled for his first chemo treatment on Friday, November 2nd. They want us to come in on Fridays, so I am guessing we will go in every Friday for the next 13 weeks starting next week. I'm still in denial. None of this seems real except the port in his chest, or as Liam says, "I have my own porch". lol!

He and Josiah are back to their usual antics. Liam may be the little brother, but he always stands up for himself and wins most battles with Josiah. He's such a strong little boy and a fighter. We will never be ready for this, but I'm confident he will face this challenge head on and come out victorious.
Playing with his birthday present from Grandma, Chuggington Choo Choo!
I am actually happy he doesn't begin treatment until after Halloween. He is so excited to go trick or treating this year as a monkey! Now I know he will feel fine and be able to walk around all day to collect treats. I can't wait to see him in his adorable Tom Alva costume.

Monday, October 22, 2012

Liam's Port Is Now Placed

Hi, everyone! Thanks for joining us here at Life With Liam. His journey with Neurofibromatosis is not new to us, but the recent MRI findings were definitely a shock. I've been meaning to write a background post here so you can read what Liam has already been through, but right now we've been busy taking care of Liam and staying in the present.

About One Month Ago..
I have to be honest... for some reason I expected it. Call it mother's intuition, but I felt like something was wrong before he went in for that MRI and for that very reason I put off that MRI as long as I could. We enjoyed the entire summer MRI-free, but it was time to face reality and go in.

Liam's oncologist schedules MRIs every 6 months to monitor the growth of his 2 tumors. They are not cancerous, but due to NF, they can continue to grow and cause other issues with his brain and vision. Unlike every other MRI we've gotten, this one came back with results we didn't want to hear. The tumors were growing much too quickly and Dr. McDonald wanted to proceed with a new treatment. No more waiting and monitoring, we were to begin chemotherapy.

Last Week
On Wednesday, Papa had to go out of town for work. Thursday morning, Josiah, Liam and I packed up the car and headed to Atlanta. Thursday was his pre-op appointment with the surgeon because it was time for the port to be placed.

What is a port? This is a tiny little device that can be placed in the neck or chest that allows easy access for the chemo treatment. Instead of poking Liam and putting in an IV every week he goes in for chemo, they will use the port for access! This will be much better and less painless for my little man, so I am thankful for this little purple invention. Plus, it is the only port safe for MRIs, so he will not have to get it taken out every time an MRI comes around. Phew!

Friday, Grandma met us at the hospital around 7am for the operation. Liam was so excited to see her and he loves visiting the Children's Hospital. There are so many things to do and see, I can't really blame him! We find something new to do each time we go. I knew we would be there for a while, so we quickly got settled in our own room and waited. They took him back around 10:15am and when they were finished about 1.5 hours later, the doctor came out and told us everything went well! One part down and many steps to go.

This Weekend
On Saturday Liam developed a cough and had a temperature around 102. We gave him medicine and waited for Papa to get home, but by Sunday it was still there. Papa took Liam to the Children's Hospital Urgent Care to see what was going on and found out he has pneumonia! They said it could be complications from the anesthesia or even a virus. Little man got 2 antibiotic shots and was sent home for the day.

We are scheduled to see Liam's pediatrician at 2pm to make sure he is doing better and the antibiotics are doing their work! Wish us luck. Liam has been a great sport about all this and is still playing. The boys think they are on vacation since we've been able to spend the night at Grandma's house all weekend! I'm sure they wouldn't mind staying longer, but I'm thinking we'll finally be able to go home today. Fingers crossed!