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    September 30th, 2010MurtLiam
     
    We were so lucky to have a super, behind the scenes, visit to the Field Museum. Liam is really hot on Dinosaurs these days. He has a knack for those big fancy names.  Nate, our friend and  paleontologist, greeted us at the door and our tour began. Liam was impressed with Sue, the T Rex, and it didn’t stop there.  We snuck around where all the scientists work. I have a feeling the big kids got more from the behind the scenes than Liam. Uncle Mike and Auntie Colleen joined us. I was a touch nervous about the freshly recovered bones and things, I had worries (ridiculous worries) that a prehistoric bug would rear its head while in isolation. This lunacy was based loosely on the importance of avoiding construction because of the release in old mold and particles.

     We then zipped through, searching for buttons to push and trying to explain a fossil. ‘Why is the fish stuck in the rocks’…that is sorta tough to explain. Nate gave Liam some great souvenirs of our visit, an awesome shirt with Sue and a patch for their next expedition to Antarctica.

    I hadn’t been since grade school and there is really much more to offer for little guys than I would have thought. There was an exhibit that brought the dinos to life they were huge, loud and realistic. We have been talking about that exhibit on and off for weeks, it made quite an impression on my boy.

     

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    September 30th, 2010MurtLiam

    The immunosuppression lasts for a year after the stem cell rescue so there are going to be a few changes in how we spend our free time.  Crowded places especially indoors are not great ideas so we won’t have any play dates at the childrens museum or places loads of sticky fingers have been. The key to everything will be proper hand washing.

    I’ll be honest I wanted to steer clear of this germy spot at the Museum of Science and Industry but Liam can find his own way there by now. We figured this weekend is the time to get dirty.

    We visit the zoo frequently as you may have started to notice. Since we pass it on our route to and from the hospital, we had to start the fib about the zoo being closed down for a good cleaning. The main rule is to stay out of the animal houses and especially the barnyard.  So, Will and Liam had a fantastic morning at the zoo exploring every inch.  This pathetic white lie will last at least until next summer. I think Liam  is beginning to believe and hopefully we won’t miss it too much this winter.

    Needless to say we are going into the transplant loaded with fun memories just as we hoped.  There’s work to be done but honestly we decieded that packing for the hospital wasn’t as important as the fun family time.

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    September 30th, 2010MurtLiam

     

    When I was pregnant with Liam I found aden+anais,  They are fantastic company that specialize in Muslin wraps(swaddling blankets).  As a L&D nurse, I am a huge fan of a tight swaddle to soothe a  fussy baby. I was excited to swaddle my own little munchkin for once. Back then you would have to look at specialty stores, but now aden+anais can be found at tons of stores e.g. Target.

    I never stopped using these huge light blankets for just about everything. So, when we realized the Stem Cell Transplant was going to include a ton of bathing and laundry I knew I needed to pick up some more.  I wrote a note to the company to see if they could give me a discount on the huge purchase I was planning.  I have had my eye on more of the muslin wraps and some of their other products.  They have comfy towels and wash cloths that are a perfect for Liam’s super sensitive skin. So, when the company received my letter they sent it on to the CEO and founder.  She responded in a way I could barely believe, as a mom herself, she said she just wanted Liam to be comfortable. This huge box arrived with all the blankets, towels, washcloths, and sleep sacs I could ever need.  I have always given these wraps in baby shower presents and I will continue with pride in what a generous and kind company I support. Check them out at www.adenandanais.com .

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    September 29th, 2010MurtLiam

     We have some busy testing days coming up.  The Oncology side is checking how well he did from the 6 rounds of chemo and surgery. The Stem Cell side is checking a baseline before transplant.  The long list of test abbreviations is enough to keep you tongue tied, just know they tested everything and everywhere.   The testing was broken up by a lovely Labor Day weekend.  The Murtaghs threw a great  BBQ and we got to unwind before the long week ahead.

     One of the million tests was his first dental exam. I had been prepping him and saying that the Dentist wants to count his teeth and for whatever reason Liam could not wait to meet the crazy lady who wanted to count his teeth. It made our first visit to the dentist hilarious instead of nerve racking.

    It was a long week before we heard any news from all the tests but they all came back as fabulous as we hoped and prayed. All of Liam’s hard work was paying off. The tumors seem to be all gone and Liam’s spine is holding stable. Liam’s skull has a bit of healing to do now that the tumor is gone, but it is barely noticable in comparison to how it looked in March.

    The only sorta negative result was his hearing. The 2 rounds were toxic to Liam’s hearing and he will be fitted for hearing aids a few months after Stem Cell Transplant. For right now Liam has mild/moderate hearing loss besides the frequent “huh,” you would honestly never know. The second transplant uses a similar chemotherapy that might further affect his hearing, but hopefully not.

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    September 29th, 2010MurtLiam

    It is hard to believe that we are finished with the first huge part of Liam’s treatment. I remember feeling like we would never get here and in a blink we’re a third of the way finished.  As things go, Liam did great with the chemo but we headed back a week later with fevers. We were discharged home after a few nights inpatient and blood and platelet transfusions.

    After spending the morning in the day hospital for yet another platelet transfusion, we went looking for an adventure. My friend and co-worker, Donna, had given us an open invitation to visit her boat , As You Wish. Liam has been weary of it all summer but today he was excited to climb aboard. Donna drove down and toured us around the dock and boat. Liam was happy to try out the captains wheel. 

     My little guy was quite taken with Donna, especially her stash of pretzels.  The below deck tour was fun, Liam of course found the funniest things impressive, i.e. the bathroom.

    Since the visit we shout hello to Donna and As You Wish every time we pass the harbors on Lake Shore Drive.

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    September 28th, 2010MurtLiam

    On the weekend, the 4W playroom has been closed. I imagine that the volunteers are busy through the summer but it is a bummer for my little guy.  So instead of worrying about how to pass the days we invited most of Liam’s cousins to hang out. 

     First up were Maeve, Maggie and Matt Dowdall

    Then, Norah and Aine came for a bit of coloring and to watch the Air and Water Show from the windows of the clinic waiting room. During the week this room is packed, but on the weekend it turns into an open room with couches and a huge tv.

    Sunday we had some more visitors. It became a bit of a pizza party with the Murtagh girls and McNultys.  

    It was a blast!! Liam got pooped after a while  but didn’t want the party to end.  He begged that everyone stayed even after he went for a nap. I think this was the best weekend stay we have had at Children’s.  Hooray for the end of the induction phase. 

    As for Liam’s last two cousins, just because they are in Australia doesn’t mean they don’t have fun visits too. Liam is technologically advanced for his age, actually for my age too:), we visit with them over Skype.  At first I didn’t think Liam would stay focused for long enough to enjoy but Grace and Luke always keep him laughing.

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    September 28th, 2010MurtLiam

     

    The final step in the Induction Phase for getting rid of Neuroblastoma is chemo round 6. Riding on a high from our surgery and speedy recovery, we enjoyed the few days before heading in. Auntie Susan set the bar very high with her cake making skills so when Liam requested a fancy cake I took on The SNAKE…

    On a visit to the clinic for blood work we happened upon some White Sox players. They seemed to be almost as impressed with Liam as we were of them (especially their size) They were shocked to see him running around and playing a week after major surgery.

    So the surgeon and oncologists were all happy with the way Liam was healing up so we started Round 6 on the 13th. Liam is getting comfortable around the hospital, he really relaxes more than I ever thought he would. I was told that it was going to happen, but I couldn’t believe when it finally did.

     Liam would do his own blood pressure if he could reach the machines. He chats up the nurses and runs the halls at night like he owns the place. This is a bummer but a blessing all in the same.

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    September 27th, 2010MurtLiam

    The  primary tumor responded very well to the chemotherapy and it is in a safe place to be surgically removed. We had a meeting with our surgeon, Dr. Rothstein, to discuss the plan for surgery all the good and scary things that happen during surgeries. Honestly, I had spent the weekend excited by the reduction in size and was brought back to reality that every surgery has risks and Liam’s tumor was not the neat little nugget that I pictured. (Easy to write all of this months later knowing that all went well).

    We did our best pretending that  nothing exciting was happening on the morning of surgery. We have made so many visits to the hospital that Liam is nearly unfazed by our trips.

    We said we were heading in for a picture of his tummy and when he woke after surgery, confused about everything, we said they found something that needed fixing. Liam accepted that logic and never revisited the issue.  Surgery was a success, simply put it was not as tough as it could have been. When the doctors are happy we are happier.

    We spent a few nights in the PICU(pediatric intensive care unit) Liam recovered well and could have moved out after the first night but there was a bit of a room crunch on our home away from home(4W).

    We were discharged on  Monday, August 9th and then plan to start Round 6  on Friday…not much down time.

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    September 27th, 2010MurtLiam

    Some silly clips and pics for your enjoyment.

    Don’t show our Neurosurgeon this one:)

     

    Just checking if Sully was awake,

     

    Liam has a special love for Shake and Go cars, his collection is growing our fastest so far is Lightning McQueen from Liam’s favorite movie Cars.

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    September 26th, 2010MurtLiam

    After  toughing out round 5 we were ready to play! Liam really bounced back fast so we lined up some more playdates with buddies. Liam has a fantastic friend, Hannah, who taught him a few new games ‘ Tag your it’  seems to be a favorite.

    We had a great week, Liam rebounded faster than I had planned so we are on for sugery on August 4th.

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