The Kelly boys just hanging out at the hospital!

First of all, I just wanted to thank everyone for leaving a messgae/note/prayer (and Tomsheck that is a heck of joke!), we are reading them all and it is nice to hear from everyone.

It has been awhile since I had a chance to update everyone on what is going on, so there is a fair bit to cover.  We wrapped up our first round of Chemo on April 5th and got the ok to head home.  It was a crazy 6 days since we got the diagnosis of Neuroblastoma, but we were lucky that we figured things out so fast.  Liam handled things like a champ and keep smiling the whole time.  We got home late on Tuesday night and got a drop off from our home health company of some of the supplies that we would be using in Liam’s care at home.  Daddy was incredibly nervous about some of the new gear, but between Maureen, the wonderful nurses of 4 west and the home health nurse I am slowly learning.  Our routine at home has a few new wrinkles in it, but it is wonderful to be home!

We wrapped up the tutorial and Liam informed us that he wanted to sleep solo in his bed, so off to bed he went and Maureen and I got a few things done around the house.  In the morning we embarked on one of our favorite things, music class.  It was the first class of a new session so we had tons of new songs, and a ton of buddies around to dance and sing with us.  After class we stopped by Mama and Pa’s (Bridget and Noel Murtagh) house for a snack and then off to Children’s for some quick tests.  It was a busy day packed with fun and treatment, home is definitely the way to go.

In the morning we started to get on with the business of organizing our lives, or at least trying.  Liam and Daddy got the lucky job of playing all day, even Nanny got in on the act.  It was a solid day of work and play, and Nanny and Pa (Nancy and Paul Kelly) came over for dinner.  Liam started to look a little run down during dinner so Maureen decided to check his temperature.  The numbers came in just above our threshold, so we paged the Oncology doctor on call and he told us to head to the ER.

We headed to the ER and the temps stay steady so they decided to admit us, our wonderful two night stay at home had come to an end.  Over the next few days out temps kept spiking, even reaching over 105 °F.  Since the chemo knocked out Liam’s immune, they started us on a course of antibiotics.  We needed 48 hours fever free to head home and we just could not seem to get past 30 hours without spiking.  After a few more days of this, we pin pointed the issue was pneumonia and began treating it.  We got the results we needed and Liam started to feel better just under two weeks after our ER visit.  We made it home on April 19th.

Uncle Mike took a trip down to see Liam and give him a special summer cut.  I think if his career of running into burning building doesn’t work out Uncle Mike can get a gig as a barber!

I am not sure exactly how it happens, but time in a hospital seems to stand still and fly all at the same time.  We were diagnosed with stage 4 Neuroblastoma  on March 31 and started treatment the following day.  We are following a course of treatment based on COG-ANBL0032.

Liam has had a ton of things thrown his way and is doing great with everything.  He really want to be home, and especially wants to play with Sully (our dog).  The first round chemo is in the books and we headed home on April 5th.

We just wanted to wish everyone a Happy Easter, hope to see you soon!