Liam's Gang

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.

Hope that everyone had great holidays, whichever holiday it may be.   Liam had been asking every morning for a week if it was Easter day so the excitement was built and the morning was a lot of fun. We decorated hard boiled eggs and hid candy/toy filled ones. Frantic searching and lots of discussion about whether Santa and Easter Bunny are pals, made for a great day. Liam deserved a great break after his long week of Chemotherapy.

We have been staying on track with the schedule, which is such a blessing. We finished radiation like we thought on March 20th. The radiation oncologist was happy with the way Liam was tolerating treatments. He had concerns it would have taken a much bigger hit to his blood counts, so luckily we are hanging tough. It is much scarier going through the second course of radiation especially when the beam is directed at his brain and spine. Hopefully the secondary effects are minimal.  We are heading in and out of Children’s regularly for blood products( blood and platelets) Thankfully, we haven’t had to stay the night since his brain surgery.

Our New York trip was 5 stars. We flew out 26th and were greeted by my cousin Terry at the airport. It was wonderful to have a familiar place to stay and such inviting company. We had a delicious dinner and made ourselves at home. If I had any choice in the treatment city,  I would have picked New York because not only do we have family there but they are unbelievably generous and willing to help.  It couldn’t be a better situation.

We checked out the Ronald McDonald house before our appointment, it is very close to Sloan (Only a 10 min walk.) The rooms are simple and well used, there is a great set up for kitchen needs assigned fridge and freezer space, cabinets and lots of counter space to prepare food on.  It seems like a well thought out kitchen for multiple family use. Most importantly for Liam there is a large playroom and seems like daily activities and other kids looking for fun. We were very bare for this trip being it was so short. I feel like we can make the space like home away from home without too much trouble.

Sloan is a massive hospital. My cousin, Terry, happens to work in the same area, not connected to the Pediatric Day Hospital but she is just 3 floors below us. You can see why I found this trip a success even before meeting the new team. It was impossible to guess how we would manage the summer but after doing a bit of a dry run it puts my mind at ease. The Day Hospital is similar to Children’s with one major difference, the playroom is better. Liam actually played in it for at least an hour after we were finished. Not a bad way to start things off. It was stress free for Liam, which was very important I hoped we would leave with him wanting to return.

The most important part of the visit was meeting Dr Kramer.  It was nerve wrecking to meet her because I just wanted it to go well and to like the person in charge of our treatment. She was lovely. She was personable and great with Liam. She seemed so comfortable with Neuroblastoma. It is her life’s work and we don’t have anyone that only deals with NB at Children’s so it was reassuring.   Liam’s NB is a fluke to begin with but then for it to go to his brain is a HUGE fluke. We are just continuing to play with the cards we were dealt. As we said before it isn’t until recently that there is even an option for treatment.  Dr Kramer described  the next phase of treatment as the ‘easiest’ part so far. We were thrilled to hear that. As a pregnant woman I will not be able to care for Liam for long periods of time after he is injected with the radioactive treatments. If Will and my mom were stuck with a super miserable Liam for a whole week it would be way worse than it is already going to be.   Back to positives… We don’t have to stay in NYC for the entire summer!!! It is going to be 3weeks of treatment then 2wks in Chicago. If we weren’t 15 minutes from one of the best children’s hospitals in the US we might not be allowed home, but thankfully we are. So, that schedule starts May 6th and ends August 4th( if all goes well and if my math from last night is right) We had to wait and see how Liam was doing before planning on a travel date. After all that excitement was over we played at the local park and trekked over to the huge FAO toy store. Perfect end to our mini trip.

Home again on the 28th, had a much appreciated blood transfusion before the weekend. The mix of radiation exhaustion and healing can leave Liam pooped but in good spirits. We took a family trip to Jump Zone and even though we stayed less than 20 min before he was zapped  it was worth the trip.

April 2 we started the second cycle of Chemo this was some of the same with an addition of 5 big pills every morning. Thank God Liam takes pills without much trouble. This is where bribery comes in handy. The first day was definitely the worst. Since removing the brain tumor Liam has been super sensitive to IV Fluid causing HORRIBLE headaches. Monday we must have over loaded him and he was in agony. Thankfully, it didn’t occur again that week and honestly it ended up the best chemo week to date. He was bursting with energy. As we expected he crashed on Easter Sunday so we missed meeting cousins and family but quiet holidays are ok too.

Monday, April 9th, we defrosted and transfused a bag of Liam’s Stem Cells that we had harvested summer 2010. We were lucky to have leftovers for just this rainy day. This time is drastically different then the last times he received his stem cells. Last year we were in hospital for a month at a time, in isolation and miserable. This time I was just a long day visit and back home. No isolation and the cells were received by Liam without any trouble. We expect the Stem cells to kick in within about 2wks. Anything is possible with them, I pray they mend all that has been broken with all his treatments. Why not hope and pray Miracles happen and only time will tell.  The next step causes trouble with blood counts so we needed to boost him up before knocking him back down.

That’s where we stand today. Things are looking better today than yesterday and I am thrilled to finally have more pieces to our schedule. The 3 month testing will be 25th thru 27th and then the brain port will be placed on May 1st. As always keep us in your prayers especially during his second brain surgery. Thank you for your supportive cards, wishes and it is so amazing how generous you all are, Thank you!!

There are days when it feels like it was yesterday Liam was running on the shore in Honolulu before all this craziness started. He was running so fast his little legs were a blur. We really only enjoyed a few special hours swimming and playing before Liam became sick. We are so grateful for all your support, it is amazing to he held up in so many ways. While we were in despair and at our most desperate it was so encouraging to feel you all with us. Even just remembering the feeling of finality on the flight home brings me to tears. We didn’t know what to expect and I must admit because Neuroblastoma is so nasty I did assume the worst. Thankfully we were greeted with such greater hope in Chicago.

We found a loop hole in our situation. Liam did so well with his treatment but the only flaw in the treatment is it doesn’t cross into the brain. All it took was one little cancer cell to start trouble in his beautiful brain and the standard treatment doesn’t cover that spot. We have been told it is extremely rare to have brain involvement and my first response is that it wasn’t long ago that children did not survive long enough to find out. We have benefited from so many champions before us. We are not the first kiddo that this has happened to. Again we get to follow in the successful shadow of so many children and thankfully we are in a situation where there is a specific treatment protocol. The studies that have come from 2003 have a remarkable 80% long term survival for children in similar boat. The frightening thing is that before the brilliant doctors in NY figured this plan it was a certain death sentence children were given less than 6 months to live. You can see why we are excited by this study. We have never been given such promising numbers through all of his treatment. I was praying for a clear sign of how to proceed and this was just the billboard we needed.

Hawaii was supposed to be our family re-centering before testing on Feb 17th. We will always wonder why he had the brain bleed there is no way to know for sure. We celebrated Liam’s 4th Birthday at Pump it Up a few days before we left and he could have banged his head around having so much fun, it could be taking off and landing a few times on the airplane or  tumors can just bleed. Certainly no one that saw Liam playing or at school would have any idea of the rather large rapidly growing tumor.

The treatment started on the day of surgery February 7th. Our Neurosurgeon reported the tumor was like a Swedish meatball and he was able to remove it entirely.  Liam is recovering so well, it is amazing how fast he bounced back.  We started our first 1 week cycle of chemotherapy Feb 20th. Liam snuck through like a champ by the end of the week we figured out how to manage side effects really well.

Radiation treatment to Liam’s spine and brain started Feb 22nd.  The course of radiation this time is going to be tougher. The initial plan is Monday- Friday at  7am for  20 to 25 sessions. Liam is put under general anesthesia every morning for 15 minutes which is tricky because when the sedation time is so short the little guys can wake up super pissed off. It’s been a roll of the dice so far. Some days are great some not so much, but he is doing fabulous. Our tentative end date is March 20th. Thankfully the treatments are at Northwestern downtown and at that hour there is barely any traffic and we usually are door to door in 20 min. The difference in this time and the last is Liam is a lot stronger now and has needed less blood products to support him. At least twice a week we go straight from Northwestern to Children’s for a few hours. The few days that chemo and radiation were together were long days but since we have gotten really lucky not spending too much time away from home.

Liam is running for long days and is appropriately tired, and lost some appetite related to chemo and radiation. Occasionally he suffers from headaches but they have become less frequent. Sadly, he is losing his hair just in the last few days. It is crushing to see his locks fall again. It is much harder to explain things this time around because he is so much smarter, older and has excellent questions that I don’t have the answers to.

What’s next… we have a consultation in New York on March 27th  with Dr Kramer from Sloan Kettering Hospital. They are a very special institution in the advances in Neuroblastoma. The details of our treatment need to get hammered out and I hope we have some questions answered during this visit. From reading the study it seems like our time line is…

• Finish radiation 3/20
• Consult in NY 3/27
• Cycle 2 of chemotherapy at Children’s Memorial
• Stem cell rescue( using the leftover Stem cells collected for transplant to boost his recovery)
• Placement of head port- ommaya
• Move to NY for 3 months (May)
• Back home to Chicago
• Welcome Baby Brother or Sister (Surprise, for those that didn’t know I was expecting in August)
• Back and forth to NY for second phase of treatment
• Oral Chemo at home in Chicago
• Live forever cancer free!!!!!!!!!!!!!!!!!

So that is the plan as we know it so far. A lot to bite off, but much better than what we thought we were up against. Liam is thrilled to welcome a new baby. Honestly, it comes at just the right time no matter how you look at it. Babes are a blessing for the hope and joy they invoke in every way. We planned to keep it a secret from Liam but there was no better time than sitting scared and hopeless in the hospital in Honolulu to bring up the most exciting new ever. As I told him I worried he may not meet his sibling but now I am certain they will be the best of friends. I have a wish that I delivery in Chicago instead of NY but no matter what it will be just fine.

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!

One of the greatest advances in Pediatric cancer is the Central Line. It has allowed Liam to receive hydration and iv antibiotics at home. He has rarely needed an IV started in his little arms. We were able to have blood drawn day after day without any painful needle sticks. Our love hate relationship was a good one that ended  October 7th  when it was surgically removed a HUGE milestone for us. It cements in our lives that we are done. Sure we will have blood drawn monthly and have an iv placed when we are doing scans but the everyday flushing, maintaining, weekly dressing changes and bathing restrictions are done! I took maintaining Liam’s line very seriously.  Infections of the central line can be life threatening.   So it was a fair bit of luck, prayers and my near obsessive line care that kept us safe.   Liam’s counts are recovering slowly but that was the predicted  recovery from back to back bone marrow transplants. We left it up to chance whether his central line would be removed before or after our Wish Trip to Disney World.  Liam’s counts were good enough and it all seemed to fall into place as if we planned it.  It would have been a huge bummer to have a central line while on vacation but with a little help from above it all turned out perfectly. It took Liam 3 days to notice that his tubies were gone. We didn’t talk about them with worry he might be upset. I wish I had video taped the moment he noticed it was adorable and he was very happy to not need them any more. With pride he shows off the scar on his chest where they once were.

We have never told Liam that he had cancer. I bet he would recognize the word neuroblastoma but he has know idea that is what he had. I plan to keep it that way until he asks specifically. He knows he was super sick and that doctors and nurses helped his body fight to get better. I answer questions creatively and I give no more info than he requests. The idea that Liam may not remember any of the pain he endured is such a blessing. That would be the best case scenario. We are always working to write over bad memories with great ones.

We are attending our local Catholic school  3 days a week from 8-11am. It is such a great thing on so many levels. Liam and I have been more attached at the hip than your average toddler so we figured the transition would be a weepy one. The first day there were no tears, I was shocked. Day 2 wasn’t so easy but the teachers at Liam’s preschool are fantastic. Gratefully they are super experienced and have a cuddly response to kids that need a little extra attention. Liam and I had a deal. After drop off I agreed to sit outside and wait for the day to be through. Truthfully I waited for the door to close and I scurried home returning without Liam being the wiser. Whatever works, right? My favorite day was when Liam said I could go home out of the rain.   The teachers have my number near the phone in the classroom in case of anything exciting. The chest tubies were still in and we have to be a bit more cautious than the average kiddo. But his excellent teachers are so great with the curve ball they were dealt. I have confidently dropped Liam without any problems and every day he bursts out of school with pure excitement. We have chosen to omit Liam’s medical history from his classmates. We think of this as a fresh start and besides wearing hearing aids and being petite there is nothing that shouts cancer anymore.  Liam is blending in perfectly, before we knew it school drop off was more fun than tears. He is more independent at home then ever before it is so fun to watch him bloom.

The nurses made Liam this sign

One day I am going to sit down with our calendar and count out every night we spent at Children’s Memorial Hospital. 4west became a second home. It is amazing that Liam adapted so well and made friendly with the nurses and doctors and all the other staff. Liam was frightened beyond belief of everything and everyone in March of 2010. I didn’t believe our Oncologist when he said that someday Liam would run happily through the halls as cancer treatment and hospital live is the norm. He was right. It was such a relief when Liam started to relax in the presence of a medical team, and when taking a blood pressure would no longer make him panic.  The reality is that adapting positively made everything easier. Transitions to anything can cause stress and I won’t say that he missed the hospital when he was home but it was routine that he tolerated.  We would frequently be admitted to the hospital on Sunday nights usually for a week at a time the longest being a consecutive month stay. We would always try to have a fun day without any mention of the admission and then sort of surprise the little fella. It was  usually a sad realization but Liam is always a roll with the punches kind of kiddo.  Our last planned stay at children’s ended June 23 we were lucky to complete the full antibody therapy without much incident. At home we still had to give daily injections for a week and lots of pills everyday but the most important part was the freedom to be home. Liam learned how to swallow pills that grown people would have trouble with(such a champ) Our visits were still pretty frequent for assessments and Blood or Platelet transfusions. It seems like from that day on we have made only positive strides toward returning to ‘normal’. The nightly iv hydration stopped on July 15th. Liam began eating with more vigor and we worked hard to have every calorie count. (The lightest Liam was through all of his treatment was in March 2011 at 23lbs, and I will with pride tell you that he gained a phenomenal 10lbs in the last 8 months. For you or I  10 pounds is like an over indulgent weekend but for my little man it has made all the difference.)   The oral cycles of Retinoic acid continued  through August 7th. That was a remarkable day. The thought that the yucky side effects are finished and Liam could start repairing all the damage done by his life saving treatment was unbelievable, we have been so blessed.

So, in August we started a testing schedule of every 3months for 2 years.  We took our first well deserved  break to Michigan with the blessing of all our doctors and a quick call by a cautious mommy to the local hospitals. We truely didn’t miss a beat with treatment ending in time to start preschool august 30th.