• Liam’s Update

    February 6th, 2012willLiam

    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!




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