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!

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.

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.

Monday
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!