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Thursday, July 31, 2008

Thursday July 31st

Liam checking out some trains

Playing with one of his favorite medical tools which is an endless source of fascination

It’s not all medical play…in his room in the Day Hospital he insists on having two farms and a doll house borrowed from the play room displayed on his bed barely leaving any room for him.

Liam’s vital signs being checked by “Cowboy.”

Tuesday, July 29, 2008

And you thought you had a long day?

Day 1, cycle 1 of 2.
2:17 am - After a 12 1/2 hour day at the hospital, we finally arrived back at our family cocoon much to Ella's delight. For Liam it was a day filled with discovery, boundless energy and frustration being closely tethered to an IV pole. For me it was a day of creativity, determination and hope. And in the last hour it has been a day of cleaning up throw up from the bed, consoling our Prince who hates to throw up especially from a dead sleep, starting a load of laundry to clean duck puppy and big puppy who are covered in grape juice throw up, cajoling him to take the pill that will make the throw ups go away, and feeling awful for him. And now he's in a fog, watching Caillou with no sound, and occasionally whimpering. Poor baby.

Saturday, July 26, 2008

We must do.

One of my favorite authors is Maya Angelou. Her words penetrate my soul. I saw a quote from her that resonated as we’re about to embark on two additional rounds of high-dose chemo to kill the bastards. (I’ve toned down the vernacular used to describe cancer cells, although it still rings in my head.) The quote is short but simple.

"Nothing will work unless you do. "

So, we are going to do.

The final pathology report came in late on Wednesday. It was awful to read Dr. Kushner’s classic short and to-the-point e-mail about the report. I believe it was something like, “Final pathology report shows (+) neuroblastoma cells - relapse.” And then there were a few niceties to temper the tone of the e-mail, but the initial shock of reading those words crushed my spirit. So many pictures came crashing into my head of things we’ve endured while going through the regimen of chemo as well as a searing pain thinking about what Liam will face…once again. The mental energy it takes to keep your spirit up and entertain an incredibly inquisitive little big boy is not physically but mentally exhausting. I’ve hung up my Sigourney Weaver persona from Alien battling an extraterrestrial creature threatening a child. I don’t want to wear it again, in fact I’m not even sure it fits me, but with the confirmation of the news we already pretty much knew…I accepted that I needed to put the suit back on and get to work. But I gave myself permission to have one really good cry before donning the muscle t-shirt.

During a long but positive meeting with Dr. Kushner on Thursday, we discussed a lot and even laughed a bit. I feel comfortable enough with him to tell him how warped I think he is when he describes the powerful chemotherapy agents Liam will be receiving as “no big deal.” I can only imagine what he’s like at a cocktail party. There were no tears during the meeting and in the end I think we wound up giving Dr. Kushner, Ester and the team a pep talk. They clearly feel awful for us having to deal with this. But we’re all dedicated to getting Liam where he needs to be – CURED – and we’re ready to do it. And, we’re all incredibly grateful that this tiny, tiny little thing that is smaller than ½ of the nail on my little finger was caught when it was…and that it hasn’t grown since April. One thing we discussed was working as hard as we can to get Liam to the place he needs to be so he can go to school on the first day. It’s going to be tough, but there’s a chance we can meet the September 10th deadline. The next question, though, is if I should hold back on him going to school since he won’t have hair and likely no eyebrows and eyelashes. Will his classmates notice? Will they be mean or will they be too young to notice or know the hurtful words older children have in their vocabulary and spirit? Will Liam even care? He seems to roll with everything and maybe he’ll roll with this, but he is older. Do I need to give him more of an explanation this time? Do I go with the, “The doctors found something in your blood that they wanted to get rid of” line but this time add an explanation about why his hair is gone, something he didn’t seem to even notice last time? I’m trying to remember how long it took for his hair to grow back the first time. I think it was close to three months, but I just don’t remember. I know he had hair in late September when we limped to the beach house Liam refers to as “his beach house” last year, but how long before did he pass for having a head of hair? Maybe I just need to get him a whole lot of hats, especially more of the “Life is Good” hats he treasures that a Liam supporter sent. And then there’s the uncomfortableness of having to explain Liam’s situation to a new group of people. Which ones will be so shocked they can’t say anything? Which ones will be cool enough with it that they can talk to me? This year we have double duty with Ella starting school as well. The parents in her class will need to know about Liam’s situation so that their children don’t bring anything to school that Ella could pick up that, in turn, Liam could pick up. OK. OK. One day at a time…let’s not think that far ahead.

The game plan is two rounds of high-dose chemo in a combination his body hasn’t seen before. His body hasn’t received chemo in nearly 15 months which, according to Dr. Kushner, is a good thing because it will deliver more of a potent punch. Between the two rounds of chemo some radiation is being planned. Kidneys and radiation don’t do well, but given that the area around his kidney is where the original tumor site was and where cancer cells were once again discovered, it looks like we need to go back to that area again. The benefits outweigh the risks in the high-stakes game of giving Liam a full and fulfilling life.

And how is Liam? Amazing. He had a play date with his gal pal Dylan on Wednesday and Thursday. He played at Appleseeds with Ella. He went to science class and learned about the La Brea tar pits and talked and talked about dinosaur bones. He took a music class at Appleseeds and, I heard, danced and danced and danced. Almost hour-by-hour you could see him regaining his strength to pre-surgery levels. And on Thursday, he ate…which is a very good thing. We’re trying to cram in as much as we can knowing that beginning Monday we start our quarantine period…the one where someone sneezing across the street brings sheer panic as you play a cut-throat game of “Frogger” trying to avoid germs as you hop from lily pad to lily pad.
We came back to New Jersey on Thursday night to give Liam and Ella three days of fun at the “country home.” At 8:20 this morning, they were both outside playing and doing what every child should be doing during summer vacation…discovering. And they kept discovering until we finally put them to bed at 10:30 p.m. after lying in a tent, looking at stars and listening to frogs. Today when I was putting Liam for a nap, he asked for a Leo story. Normally Daddy is the Leo story person since it’s his special activity that he does with Liam, but there’s one Leo story that he asks me to tell him – Leo Goes to School. I’m sure it’s because I’m the one who primarily takes Liam to school. So, I told him the story of Leo going to school which essentially is a detailed, step-by-step dissertation of what Liam’s morning routine. If I forget something, Liam reminds me to include it. He wants to hear every detail from what store windows he likes to look at in the morning to what he Leo wears to school. After today’s story, he asked why he hasn’t been going to school. I explained that it’s summer vacation and that no one is in school right now and even Jean isn’t at school, something he found incredibly fascinating. (I think he thinks she lives there.) We talked about how he’ll have a different teacher in the fall and there will be different kids in his class, new friends to make. And then he turned to me and said, “I miss my friends.” And tonight when we were in the screen house at 9 p.m. doing craft projects with a brave little boy who was not tired (Ella was inside taking a bath with Grandma after peeing on her leg when she was outside), he looked at us and again said, “I miss my friends.” And when he asked who he missed, he named the first two children he met at school. Liam, my dear sweet prince, we’re doing everything we can to get you back to your friends at school. Everything we can.

Wednesday, July 23, 2008

Cat and Mouse

We’re in waiting mode…waiting for the final pathology report. Pathology is literally looking at every cell in the 1 cm sample taken. Every single cell. Once we have the pathology report, Liam’s team of dedicated doctors will develop a game plan. It feels like a giant game of cat and mouse. The mouse tries to hide and we have to find it before it does any damage. I’ve never liked mice.

Liam had his post-op visit on Tuesday. He walked into the hospital pushing his crane. He collected four necklaces to wear from the treasure chest in Dr. Kayton’s office. The necklaces have a silver pendant of an animal. He has a turtle, chimpanzee, elephant and bird that are secured with a leather rope. He loves them and wore them all day. He looked pretty cool. You’d never know by looking at him what he went through a few days ago.

After a glowing post-op visit that left people shaking their heads in amazement of how quickly he bounced back, we visited the Childen’s Museum. He played and explored and discovered for hours…just like every other child. He loved hanging out in the Dora & Diego exhibit, danced to the Diego theme song playing over and over and over again, and especially enjoyed spending time in Boots’ tree house. His favorite was sitting behind the wheel of the fire truck which he drove with gusto. And when we were leaving, we stopped in the gift shop where Liam’s first concern was picking out something for Ella.

He did, though, complain once yesterday. He complained that his incision was itchy. But after showing him how he could gently scratch what looks to be a 4” incision, he was happy.

Monday, July 21, 2008

The Other Shoe Did Not Drop

Nobody said this was going to be easy. Friday’s news wasn’t what anyone wanted to hear, but it’s OK. We’re all OK and we’re going to be OK. Unfortunately this is not the speed bump that we hoped surgery would be. Instead, it’s more of a pot hole. It’s jarring, disturbing and leaves you shaken but we’re still moving forward and nothing has changed. After a very eventful day and night of broken sleep on Friday, Liam woke up early on Saturday morning in the Pediatric Observation Unit (POU), examined and assessed his body with the mass of wires attached, IVs inserted, bandage on his side, and declared he wanted to go home. I told him that in order to go home he’d have to walk, eat, and go to the bathroom. It was about 7:30 a.m. At 8:30 a.m. he announced he was ready to take a walk…naked. I convinced him to at least put on a pair of Crocs and dinosaur underwear. After disconnecting him from the tangle of wires attached to various points on his body that monitored everything from his heart rate to the amount of oxygen levels, I very carefully lifted him off the bed to stand him up on the floor. He has an incision in his abdomen and any contraction of his stomach muscles is extremely painful. He kept saying to me, “don’t hurt me, Mommy, don’t hurt me.” It broke my heart to hear him say those words. In a million years, I would never do anything to hurt my sweet Prince. Never. And then he was up and walking to the surprise of the POU nurses who happened to be two “old” friends, Reece and Dani. It was less than two months ago that Reece and her family were celebrating Liam’s birthday with us and now she’s caring for him. Liam stood straight up and gingerly walked to the end of POU unit, turned around and walked to Reece’s desk where he asked if he could sit in mommy’s lap and play with her computer. So we sat together and he pressed buttons on the keyboard. He spent the rest of the morning watching Curious George, reluctantly drinking water and sucking on his beloved pacifier. A few hours later he announced he had to go pee pee and asked me to get him out of bed so that he could shuffle his way to a toilet in the room. This is what Larry and I truly love and admire about our son. He has an indomitable spirit. You can’t bring him down. He is truly our superhero. He is amazing and we are honored to be his parents. He is one of kind.

When our dear friend Fraya, who Liam calls Aunt Fraya and who made Liam’s spectacular birthday cake, arrived on Saturday morning to keep us company…Liam croaked out via his anesthesia-induced voice, “Aunt Fraya – There’s a chair right over there for you to sit.” That’s our Liam…always more concerned for everyone else.

I had a long talk with one of Liam’s oncologists on Saturday and while it was a very tearful conversation for me, it left me feeling much better about the situation. I asked the tough question that no parent should ever have to ask and was assured this was not our situation. The whole thing is really quite bizarre, not that bizarre makes it any easier. Liam has sailed through a very difficult treatment regiment and risen to every challenge. He has had no evidence of disease (NED) since last June. His most recent tests performed July 9 – 11 showed that everything was still status quo. The LDH levels in his blood were normal, his urine markers were normal, his bone marrow was clean, his MIBG scan was clean, and yet here we are in a place we never wanted to be but one that many, many families have traveled down before us. We’re certainly not alone. And the strangest thing is that this spot on his right kidney was there in April and stayed the same between then and now. As anyone who knows neuroblastoma understands, this certainly is not characteristic of the disease to do nothing. If I take a glass half empty view, this would be unbearable. If I take a glass half full view, we are incredibly lucky to have caught whatever this thing is in such an early stage that it doesn’t even register on any test. This is a manageable bump. This we can deal with. This we can handle. This, though, also serves as yet another reminder of how much we need to take e-v-e-r-y day as an incredibly special gift. Time is the most precious commodity and it needs to be celebrated and savored. And not knowing what the future holds, something none of us knows but that has a special poignancy with us, we’ve decided we need to step up our commitment to raise money for pediatric cancer research and cherish even more every day we have with Liam and Ella. This news didn’t defeat us, it rededicated us.

During our conversation, I learned that the frozen slide of the dime-sized sample taken consisted of 95 percent “junk” (scar tissue, part of a cyst, and other post-op stuff), but in that tiny sample were a few rogue cancer cells that I’ve named, “Little Fuckers.” So now we need to do, as Dr. Kramer termed it, “mop up.” Even though Liam is technically NED, we now know there are still cancer cells that need to be eradicated. Liam is likely facing two rounds of high-dose chemo. He’ll lose his hair, again. We’ll need to traverse the crevasse between having no white blood cells and the risk of germs and infections, and having those precious white blood cells, again. He’ll feel awful, again. His energy will be wiped out, again. He’ll get skinny, again. But there’s one thing about Liam we know will not happen. He will not complain. He never does. He asks an endless litany of questions but he never complains.

We arrived home early Saturday evening and Liam asked to be on the couch. Within an hour of being home, a phone call came from Fireman Tommy. Would Liam like visitors? And shortly after 10 firemen were in our apartment visiting Liam and two fire trucks were parked out front. Liam smiled with excitement and true happiness to see his guys. And as I looked at “The Guys,” I thought about how Liam too is a firefighter. You never know when you’re going to be called into battle but when you are you go. You just go because it’s what you have to do. It might be scary and it might seem like an out-of-control fire, but it can be won if you fight with clear plan. And as Liam had his guys circled around him, the ladder truck raised its ladder for him to see from the apartment window. It was right there ready to join the fight.

Throughout the rest of the weekend, Liam rested, we loved him, encouraged him to walk, eat, drink, and tried to refocus our view of the situation. It is difficult, yes, but our precious son is still our precious son and he’s very much here with us now which is cause for celebration every day. True to Liam form, he refused to take any pain medication. He simply refuses. He has a very Zen-like way of dealing with pain. He breathes deeper and gets very quiet, but he doesn’t cry and doesn’t complain. He just deals with it in a very private way. Getting him to eat is already becoming a challenge, but we can deal with it.

The day before his surgery we spent at our home in New Jersey for a day of swimming and bike riding. Liam has made amazing strides in the pool this summer. Two weeks ago he started jumping from the edge of the pool which means getting his head completely wet, never a favorite thing. And the day before he was plunged back into the hospital, he taught himself to put his face in the water and hold his breath and do a running jump into the pool. We cheered. He smiled ear-to-ear. We told him he was amazing over and over and how proud we were of him. He did it on his own and was delighted with his new-found skills.

On Saturday morning when he was walking at 8:30 a.m., the first child in the POU to walk that day, I again told him he is amazing. And Sunday night when we were putting him to bed after a day that included a fireman playdate, walking, visiting with Grandma and recuperating, he looked at us and said, “I am amazing.” Yes, my dear sweet, sweet son, you ARE amazing.

We can deal with this. We have to. Liam wants us to.

Friday, July 18, 2008

Update July 18th 6:00 PM

It is with great pain that we musttell all of Liams family, friends, and admirers that the results of todays tests were not as all of our hearts had hoped. The Kidney was found to have a small dime sized tumor present. Pathology quickly confirmed it was neuroblastoma.

Gretchen and I have only felt this kind of pain one other time, the day Liam was first diagnosed. Liam is resting and stable from his surgery and we are waiting for his room in the POOH unit to be ready. It will only be a few hours before he will be made to walk and a little more than a week before he will begin another protocol with chemo being the initial therapy. It is so unfair and I want more than anything to be able to shoulder this burden and to take on his current pain as well as the pain he must yet endure in his continued fight against a ruthless, miserable, coward of a disease. Liam showed bravery and courage today like no 4 year old should ever have to display. Liam, Gretchen, and I thank you for your well wishes and hope on this most difficult of days for our family.

Update July 18th 2:15 PM

Surgery just started and he is stable and doing fine.

Conor for Gretchen & Larry

Update July 18th 12:30 PM

Larry just emailed to say that surgery has not yet started but will within the hour.

Conor for Gretchen & Larry

Thursday, July 17, 2008

July 17th Surgery Update

This is just a quick update to say that surgery is scheduled for 9:45 tomorrow morning. I will post any news as soon as it is available.

Conor for Gretchen & Larry

Tuesday, July 15, 2008

With Heavy But Hopeful Hearts....

I wanted to take a minute to update everyone on what we have learned this week as it relates to our dear Liam. During his routine follow up scans (every 90 days) an abnormality appeared on the CT scan. Further review and a look back at his April scans revealed that this small abnormality, that looked like nothing more than a shadow, was present then as well but had not grown in the interim. The fact that it was not seen on his April scans was not ideal but because it had not grown since then it is considered a good thing. It was enough of a concern though to his doctors that they ordered two additional types of scans to see if there was truly something present and if so to try and determine what it is. The scans all confirmed that there is some small growth present on his right kidney but they were inconclusive as to what it is.

The concern stems from the fact this is the same kidney that was entangled in his original tumor, and though only about 3% of kids relapse in the original tumor location, its existence is unexpected and unwelcome. All of the other markers monitored to look for signs of relapse like urine, LDH, and even the all telling MIBG scan were negative and show no signs of new disease. Yet the fact is all of these markers can show negative and new tumor growth can be present, so for this reason Liam’s team of doctor’s feel it is necessary to go in and see exactly what this 1-2 centimeter spot truly is. You might wonder why such an aggressive approach is being taken if no other signs point to a relapse. The reality is Liam’s type of cancer is very aggressive, as many of you know, and the doctors at MSKCC do not take anything for granted when fighting this beast. When the risks are measured it is far riskier to leave it unchecked and to give it any chance of spreading if it is indeed a new tumor. It is a decision that is more difficult for us to make than I hope any of you ever have to experience first hand and yet the decision in a sense is made for us…we have no real choice.

Our hope is that it is nothing more than scar tissue since this kidney took quite a beating from the tumor and the 11 hour surgery last year. The surgery is scheduled for this Friday and Liam will be in the best surgeon’s hands. We are fortunate in that Dr. LaQuaglia will be doing the procedure and is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Liam for 11 hours straight to resect his tumor last summer. It is likely Liam will be in the hospital from 3-7 days depending on how everything goes. If Liam has anything to say about it I think it will be closer to 3. Your support and understanding during this very difficult time will be appreciated more than you will ever know. We expect this to be nothing more than a small bump in the road; anything else is just simply unacceptable for all of us. Please pray and and send good wishes to Liam as our dear prince endures yet another unfair challenge. A challenge he is far to young to endure alone and one that breaks our hearts to see him have to face just as he was making such amazing progress on so many fronts and so full of wonder and energy.

With hope,

Larry and Gretchen

Monday, July 14, 2008

Monday July 14 Update

Liam eagerly went to summer camp at school today carrying a pink bag with his latest treasures - three "Harry the Dog" books, a small book of maps, his favorite black rubber ball that bounces really high, his hand-held Leapster game and his key ring that is actually two key rings - one with three keys and the other with two keys - connected with a rock-climbing clip to make one really long key chain. The keys are all blanks we got at the hardware store that have pictures of Mickey, Pooh and other fun characters on them. He loves his keys and walks around jangling them whenever possible. I forgot his lunch and had to buy him lunch at the corner deli which consisted of a banana, chocolate milk, travel-size box of honey nut Cheerios, and a box of raisins. He said it was the best lunch he ever had. When I came back to drop off his lunch, he was happily sitting at a table squeezing a plastic cup with a little bit of water in the bottom to see what would happen. Yes, it spilled. He spent the weekend jumping in the pool - a new discovery for him - and doing it over and over and over again. This is the guy who hates to get his face and hair wet so for him to jump into a pool was really quite impressive. And of course Ella, who can never be outdone, followed suit and was also jumping in the pool to squeels of delight.

The thing showed up on the MRI but it's still all very inconclusive. In essence, we have no idea what this is but surgery is being discussed because there's enough doubt that we can't rule anything out. The factors in the plus/minus column are equal which makes for an even more puzzling set of circumstances. The one thing we know for sure is that it was MIBG negative which is a very good thing. There are other good things but we can't deny the fact that there is something there that needs to be investigated.

Saturday, July 12, 2008

The Shadow Continues to Doubt

After a very long, 12-hour day at the hospital where Liam couldn't eat or drink until 1:30 p.m., we have no news to share. The PET scan was inconclusive. It was positive in an area that it should have been positive but also was close to this unidentified 1-centimeter spot. There are lots of reasons why this could have been - his right kidney tends to pool more fluid because it doesn't drain as efficiently and he still had MIBG dye in him which registers positive and was in his kidney The MRI was done too late in the evening to get a reading. (We didn't start it until 6:15 p.m.) The MRI will be the deciding factor. What we do know is that Liam has no evidence of disease in the ways it is measured and he has not exhibited any changes other than being a very active 4-year old. We also know he has a spot on his less-than-perfect right kidney that is at the top, has been there since April, and is the same size since April. The fact it's the same size isn't consistent with cancer and the fact it's in the same spot as his original tumor isn't consistent with what happens to patients operated on by Dr. LaQuaglia. 97% of patients don't have recurrence in the original tumor spot because he gets it all during surgery. This spot was also radiated last summer so it got another dose of treatment and that radiation also could have further damaged his already damaged kidney. I hate to use the word but, but I have to here. The but is this is a formidable foe that doesn't like to lose so we need to "pull out all the stops" and find out what this thing is. I heard lots of scary words when I finally met with a very tired looking Dr. Modak sometime after 7 last night. My legs were shaking uncontrollably when I met with him. He, too, is puzzled, frustrated and very concerned. We were very fortunate that Linda, one of the awesome nurse practitioners on the team, stayed late on a Friday to entertain Liam so that I could meet with Dr. Modak.

Liam stories to share.
- He insisted on bringing his new guitar to the hospital and carrying it around in the case. At 7:15 a.m. he was serenading Reece, his favorite ICU nurse, with a lovely original tune. He held impromptu concerts throughout the day including in the long hallway on the 2nd floor we call the echo hallway because of it's great echos. While he was in nuclear medicine, he pulled out the guitar but this time grabbed a box of Cheerios he desperately wanted to eat, pulled the bag containing the cereal out of the box and carefully placed it in the stroller seat, and placed the empty box in front of him. He then proceeded to play and encouraged people to give him money for playing. One of the nuclear medicine techs took him into the scan reading room for him to play. And play he did. He total take for the day was a little over $3.

- The MRI is really, really, really, really loud. We were both stripped down to hospital gowns and undies for the scan. The only time he cried during the day was when he had to put on the hospital gown, but I think when he saw me in one too he was a little better with the situation. He was on the table, strapped in, ear plugs firmly in place. He never flinched. He was unbelievable. The noises sounded like grossly unnatural sounds you'd hear in a science fiction movie with alien ships invading the earth. They were awful sounds. We are hoping those awful sounds yield the test results we need. When the sounds would briefly stop, he would yell out, "Mommy - Are you still there?" I would assure him I was. And then he would say, "OK - I'm fine. I just wanted to make sure you were still there. Here we go again!"

- When he could FINALLY eat around 1:30, he looked at me with a mouthful of trail mix, lifted up his drink and said, "Mommy - Cheers!" We clinked cups and took big drinks. He then noticed I, too, hadn't eaten and asked if I wasn't eating because he couldn't eat. I told him yes and he said, "it's because we're a team."

I can tell he's getting older. He kept asking me today why people were using the word "test" when they were talking about pictures. He wanted to know why. I need him to be fine.

Friday, July 11, 2008

A Shadow of a Doubt

After being reviewed by countless doctors and the Tumor Review Board, we're adding an MRI to tomorrow's schedule. So on tap for tomorrow is bone marrow bright and early at 8, PET Scan at 11:15 and MRI at some point TBD. Looks like a long day of no food or drink for the prince. If only I knew what a PET Scan machine looked like so I could prepare him. I don't even want to think about the MRI. Breathe deep, everyone, a collective breathe deep and let's make it through the day.

Thursday, July 10, 2008

July 10th Update

Two tests done, two to go. The MIBG is negative. Great. The CT scan, though, shows a shadow at the top of Liam's right kidney (the side his massive tumor was located) that shouldn't be there. It turns out the same shadow was there in his April scans but it wasn't reported. But because this cancer can't be given an inch and because Liam is still very much in the danger zone, he's having a PET Scan tomorrow. PET Scans show areas of increased metabolic activity.

There are scores of stories to share from how incredibly well Liam handled lying "still like a statue" during both scans (one was almost two hours), to the radioactive isotope contamination scare when Liam enthusiastically grabbed the syringe with the radioactive isotope in order to push it into his line that left all of us wondering if his skin touched the radioactive isotope. (He certainly makes his presence known wherever he is.) Today he was awarded the most super duper patient of the day for being so incredibly awesome during his long MIBG scan which, at one point, had a massive 3' x 3' plate within inches of his face and chest as he was strapped to a narrow bed with his puppies, pillow and super soft yellow blankie surrounding him. I'm not sure I could be perfectly still with something that close to my face. I'll save the stories for later. Instead I need to hunker down, get some pressing work finished, try not to worry, and love with all my heart and soul. Liam is completely oblivious and is happily eating watermelon, waiting to pee in the pee container (it's part of the four-hour urine collection that's one of the tests in the battery of tests), playing with his firetruck from his London friends and watching Curious George build a robot (his favorite Curious George episode).

We'll keep you updated.

Wednesday, July 9, 2008

July 9th Update

It's scan week and we're in scan mode. Our apologies for the lack of communication. The writing mojo was shaken with the death of so many children. It makes you want to hunker down even more and just live for every moment you have with even more conviction. Lately we've heard a lot of, "he's doing so well that everything must be OK" or "aren't you glad your battle is over?" And, from the outside Liam does look perfectly "normal." In his adorable class picture, you can't tell Liam apart from his rosy-cheeked classmates. He fits right in. Unfortunately looking healthy on the outside is not a sure sign that everything is OK on the inside. It's a sneaky cancer. It likes to make return visits. It's the reason Liam's little body is scoured every 90 days looking for any signs. And that 90 day regimen will not end for another year at which point the testing is pushed to every 120 days for another three years. It won't be until June 2012 that we have been told we can pop a champagne cork. Until then we're just trying to live as best we can one day at a time, one memory at a time, one experience at a time and walk the double tightrope between two parallel but completely different worlds. It truly is crazy, awful, unacceptable, and terrifying. It makes no sense that at this point we know of more children who haven't made it than who are doing well. We continue to be consumed with raising money for research and there are some amazing developments that are imminent as a result of the efforts we've been involved with. Together we truly can make a difference but, in my opinion, we can't make it fast enough.

Today Liam's port will be accessed for the next three days in what will be a leg kicking, screaming fit. "No - Mommy - No - I DON'T WANT THE NEEDLE! NOOOO!!! NOOO!!!" Following the accessing is his CT scan and MIBG injection in nuclear medicine. Tomorrow is the knee-weakening 2-hour MIBG scan. Friday is the painful bone marrow extraction from four sites in his pelvis and a four-hour urine collection. Three weeks ago the stomach ache of anticipation started. Today Liam has his first speech therapy session to work on the language he developed while sucking on a pacifier during treatment. We have utmost confidence, of course, but I'd be lying if I said this week isn't completely unnerving.