Today a dear friend was laid to rest, Officer Michael Schaefer you will be missed by all that had the pleasure of knowing you.

Maureen and I were both lucky enough to meet Mike many years ago, in fact we have each known Mike longer than we have know each other. Mike’s life was tragically cut short last Thursday when he was hit and killed by a taxi. Mike was an amazingly generous man, and gave Maureen, Liam (Mighty Liam as he called him) and I so much support over the past few years. He was always generous with his time, smiles and laughter. Mike had a wonderful zest for life and truly understood that each day is a gift and should be lived to the fullest.

I would encourage everyone to be a little bit more like Mike. Surround yourself with people you love and have fun, make every day count and find a way to make an impact in the world.

For those that knew Mike, we know that the world lost one of the truly great people. For those that didn’t know Mike I included a video piece NBC news did on him last week.

I just wanted to ask all our friends to take a moment to say a prayer for Mike’s family.

Life has been a little crazy as of late.  We have been bouncing back and forth to New York every few weeks for treatment, not to mention Baby Kelly is due to make an appearance any time now.  We have not had a lot of time to stop and update everyone via the website, so if you are around this Saturday come out and meet us at the Nil Tap for a fun block party to support Liam.

What: All You Have to do is Tri Fundraiser!
Where: 5734 N Elston Ave.  Chicago, IL
When: This Saturday –  August 18th  – 3:00 – 8:00 pm

For those of you who have not heard, our friend Mike Schaefer heard what happened to Liam while we were in Hawaii and all the treatment Liam has had to start up again and said to himself that he needed to do something. Mike was already planning on doing the Chicago triathlon so he thought about having some folks sponsor him.   It was then that his mother stepped in and said  “Mike your thinking to small. Let’s do this right” it was then that they came up with the idea to have the block party…and the rest is history.

It should be a great day.  Mike is having a couple of the Shannon Rovers come, a firetruck for the kids (or adults), a DJ, food and great raffle prizes!!!  We cannot wait to see everyone, so come on over if you are in town and looking for a fun way to spend Saturday!

Thanks for throwing this party Mike, it will be great to see everyone!

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Liam was amazing in this tiny space for over an hour long scan, he did it for the first time without being sedated.

For those not following Liam’s adventures on facebook, sorry for the radio silence, we have been a little busy since our last update here on the website.

I’ll start with the good news, about two weeks ago Liam was poked, scanned and underwent a battery of test and the result have all come back exactly the way we prayed…The treatment is working and Liam is headed toward a cancer free life again!

We have been bouncing back and forth between Chicago and New York for treatment, and as soon as things calm down a bit we will update everyone on the New York leg of this adventure.

Just wanted to thank everyone for all the well wishes and prayers over the last few days. Liam is doing amazing considering everything that went down the past two weeks. He is up on his feet and even made it to school on Valentines day to see all his buds and score some candy.

We still have some planning to finalize, but it is looking like we will be in active treatment for about 9 more months. The treatment will consist of radiation and Chemo, which both start this week. We will be trying a new type of antibody as well in the coming months and we will share more on this journey as we conquer each new challenge.

I figured a few pictures would tell a better story on how Liam is feeling than another rambling post. We wanted to thank our buddy, the amazingly brilliant and kind Nate Smith, for hosting a wonderful adventure into the secrets of the field Museum collect. Liam always loves when Nate shows us around.

Click here to check out more pics from our day with the Dinos!

Liam with a casting of Sue's foot.

As many of you may have heard by now, Liam has had a set back in his recover as the Neuroblastoma has return and is currently in his brain.   As we type, we are working with our primary team in Chicago and are also consulting with some folks in New York City on what options we may have.  We have a tough battle on our hands, but we made it once and will make it again.

Just a little background on the past few days since everyone is asking how this happened so fast.  Liam has quarterly scans every three months to monitor his body for any potential relapse signs and he was due to have these scans in mid-Feb.  Maureen and I made a promise to each other to always do something fun before the scans since you never know what may happen in life (it turns out to be a really good rule)!  So on Monday January 30th, we jumped on a plane and headed to Hawaii.  We landed late Monday night and woke up early and hit the beach and pool.  Liam was in great form, swimming and running as fast as can be.  We headed back up to the hotel room for a quick wash and  then off to lunch.  It was at lunch that Liam seemed a little off and even fell asleep at the table.  With Liam sleeping in the stroller, we headed off for a nice beach side walk.  Liam gave up naps a long time ago so it was a nice change of pace for Maureen and I to chat.  When he woke up he was still not feeling to great, and we headed back to the hotel room.

On the walk home, Liam threw up and said he was not feeling so hot so we hustled up to the room and got cleaned up and headed for a rest.  The next day was filled with lots of vomit, and we were in touch with the pediatrician back home and thinking Liam had picked up the stomach flu at the birthday party on Saturday or on the plane.  On Thursday morning, the vomiting started to get better and we thought we were catching a break.  Later that night, things started to change and Liam started to have a very intense headache.  We reached out to our pediatrician and worked over a few options, most of them were run of the mill stuff but we also had some scary things out there and she recommended heading to the er for hydration if things did not clear up by the next day.

Friday February 3rd, we decided not to waste any time and just headed to the er at the children’s hospital in Honolulu.  We started with some hydration since Liam didn’t have a lot to eat of drink.  Given our history and the intensity of the headaches we got a CT and some x-rays.  A few moments after the test results were back, the ER attending informed us in very blunt terms that Liam has a tumor in his brain and it was bleeding.  The ER consulted with Neurosurgery and they opted to intubate,  some sedation and an MRI to see what the was going on in Liam’s brain.  As you can imagine the next few hours were brutal, we were very lucky to have one of  our oldest friends (Brendan Smith who lives on the island)  with us to keep us from totally losing our minds.

Our first move was to get off the island and back to the hospital in Chicago.  After reviewing everything, Neurosurgery cleared us to fly and we booked three tickets on the next plane out of town.  Brendan drove me back to the hotel to pack our stuff since we were about 10 hours from take off.  When we returned to the ER Liam was resting and Maureen was working with our doctors back home on a plan for when we land.  It was about that time that the ER attending came in and told us he  decided he was not going to release us and that if we decided to try to fly with Liam he would die.  He mentioned two other doctors at the hospital had been involved in the decision.  We demanded to speak to everyone and got our doctors in Chicago on the phone.  After several intense conversations, it became clear the ER doctor was the only one that held the opinion.  Sensing we may be trapped on an island by this one individual  that did not have the means to treat Liam (they could not even give him platelets) , Brendan, Maureen and I even discussed just breaking out of the ER.  After battling Maureen and our Doctors back home, the ER attending agreed to release us if we waived him of any responsibility (which we did).  We got out of the building as fast as possible and Brendan drove us in the middle of the night to the airport.  When we got to the airport we learned that it did not open for another three hours, so we huddled up outside and starting making plans for our arrival.

The only three tickets open on the flight out were in first class so that actually worked out really well as far as space for us to care for Liam.  We alerted the flight crew to the situation and gave them the numbers to call should anything start to happen.  The staff and crew of American Airlines was amazing, they earned our lifetime business for how amazing they were.

The airplane prepared to depart and the cabin doors closed and pressurized.  Liam grabbed his head and started to scream as the plane was backing out.  Maureen and I asked Liam about the pain and were getting ready to stop the plane, when Liam said in a very strong voice “I’m ok, I’m gonna be ok!”  He was not comfortable so Maureen gave him some morphine and that seemed to settle his pain.  It was an insane start to an insane trip.  WE battled very bad flying conditions, LAX, layovers, pain, fear and exhaustion (we had been awake for 35+ hours at that point) and arrived around midnight on Saturday.

After we arrived at Children’s in Chicago, the team started to inform us of the testing schedule so we could get a better read on the situation.  The CT and MRI here gave us a better look at what was happening and we have been working over the past 30 hours to put a plan together.

We are going to fight this relapse!  We still have more tests to do in the coming days to get a complete picture, but the first battle begins tomorrow February 7th at 10:00 am.  We need all your prayers as Liam is heading in for brain surgery to remove the neuroblastoma mass.  His body is not in ideal condition for this to take place as it has not fully healed from his last battle.  He has one of the best Neurosurgeons in the county doing the operation tomorrow.  The procedure may take most of the day, so any moment you have please stop and say a prayer.

When we get a chance to catch our breath, and get some more of the test results we will try to update everyone with some better information and less run on sentences.

Thanks to everyone for the love and support, we are spinning right now and need all of you!

Liam’s Gang Benefit

An evening of great friends, family and food to benefit the Liam Kelly Trust

Please join us on October 15, 2011 at the Irish American Heritage Center for a very special evening with a variety of dinner options and a cash bar. Enjoy the live music and dancing while you browse the silent auction and the many raffles we will hold! Don’t worry about a babysitter, as we’ve reserved a separate kids’ room to keep the little ones entertained.  The event will kick off at 4:00 pm!

Location

Donations

Do you run a local business? Would you like to be listed in the silent auction book? We’re accepting sponsors for this event!

$250
Your name/company name will appear in the silent auction book

$500
Your name/company name will appear in the silent auction book and will be displayed on video screens and signage throughout the evening

It’s easy to donate!

Online	By Check	By Phone
Donate online through our secure credit card options: $250 level $500 level	Please make all checks out to “Liam Kelly Trust” and mail to:Liam’s Gang P.O. Box 257 Mt. Prospect, IL 60056-0257	Contact Katie Smith at Katie@liamsgang.comWe’ll also gladly accept non-cash donations!

You can also donate any amount in person at the event or online:

Planning Committee

Any questions about the benefit dinner can be directed to our helpful volunteers:

Volunteers

Tom & Peggy Brosnan
Ed & Mary Condon
Una Depner
Mary & Frank Duffy
Mary Emory
Francis Fitzgerald
Paddy & Teresa Forde
Una & Mike Garrity
Diane & Kevin Keating
Kitty Keating
Mary & Jeff Keating
Mike & Sue Kilroy
Monica McGuane
Noel & Mary McNamara
Tommy Mulkerrins
Kathy Murphy
Mary & Tom Newell
Jim & Tess Nix
Eileen & Dan Sullivan
Terry & Jill Velan
Rob & Marie Lowe
Bill & Karen Page

On behalf of the Kelly/Murtagh Family we would like to invite you to join us for a fun filled day of golf in support of Liam Kelly at the Liam’s Gang Golf Outing. The outing will be held Saturday, June 18 at Mount Prospect Golf Course. The price for the outing is $125 per golfer and includes 18 holes of golf with a cart, food at the turn and a goodie bag.

Please contact Mike Murtagh (event organizer) no later than June 1st with your foursomes. …If you don’t have a foursome, please let us know and we can match you up with a group. Once we have a good idea of attendees we will send out tee times, directions and other details. If we have a large number of golfers coming from the city we will try to organize a shuttle.

We are also looking for corporate hole sponsors so if your business would be interested please contact Mike.

Call Mike for all the details 773-510-0763

When: Saturday, June 18 · 11:00am – 8:00pm
Where: Mount Prospect Golf Course
600 South See-Gwun Avenue
Mount Prospect, IL

Please contact Mike Murtagh by June 1st
Email: murtaw13@yahoo.com
Phone: 773-510-0763

We look forward to seeing everyone out on the links!

Golf has always been a part of our family fun so we just wanted to invite anyone who might be up for a round. For those that cannot golf, we are also planning a good old fashion party in the fall when all our stays at children’s hospital will be finished.   So stay tuned for the details, we look forward to dinner and celebrating with each of you that has been so supportive over the past year.

Mount Prospect Golf Course

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Check out my new hearing aides!

In order to get to this point in Liam’s treatment, he had to endure some very serious drugs that each have a laundry list of side effects that can present themselves now or even a few years down the road.   One of the first drugs the Oncologist warned us about was a platinum based chemotherapy agent known as Cisplatin.

One of the side effects of Cisplatin is ototoxicity, or hearing loss caused by damage to the nerves.  We started noticing Liam was having a harder time hearing things after our second go around with cisplatin in his final round of Chemo.  Since ototoxicity is a known side effect, we had been conducting audiology examines with Liam every few months to keep tabs on any hearing issues.  Liam was recently fitted for special hearing aides to help boost the hearing he still has.

The video is a simulation of what things sound like to Liam without his hearing aides, you can see the audiologist toggle the settings from normal range to Liam’s range.  It is  amazing what he can adapt to, even when his aides are out he has found ways to compensate for the hearing loss.

March 31, 2010 is a date that is burned into my mind for life; one year ago today was the day that I learned the word Neuroblastoma.  Over the course of this past year, we have experienced an amazing passage of time where it seems to crawl and fly by all at the same time.

As I look back, we learned to spend holidays and special family time (Pa’s Birthday) in the hospital, I remember wishing everyone a Happy Easter and thinking how strange it was that we were not going to see friends and family.  I was wrong about not seeing folks, as we quickly learned to have family parties at the hospital (which is not an easy thing when you consider the size of this family). We also welcomed a new hospital family into our lives and formed friendships with our healthcare team, I would imagine we will keep many of these extraordinary folks in our lives for a long time.

The Kelly Family had a lot of ups and downs looking back (Central line falls out, Chemo - Round 2, Round 3, Round 4, Round 5, Round 6, Surgery, Stem cell harvests and 2 Stem Cell transplants and of course our current go around with antibodies),  but we made it through all of that.

I just wanted to say a quick thank you to all our friends and family, without you we would not have made it through this year.  When this is over, I look forward to spending more time with all of you!