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Tuesday, May 1, 2007

Tuesday May 1st Update

Goldie House

So it is Friday and for the second week in a row we are heading home to the house that Liam refers to as “Goldies House”

Goldie is our Lab and for some strange reason whenever he wants to go home he says he wants to see Goldie. I personally don’t believe that it is because he likes Goldie more than Madison but more because we are always yelling for Goldie because she doesn’t exactly listen very well, so when Liam thinks of the dogs it is Goldie that first comes to mind. He used to mimic the way I would yell out the door for Goldie except he would yell something that sounded like goadie!. Goldie was one of Liam’s first 10 spoken words. Over the last 2 weeks Liam has really started to catch onto the “country house” and “city house” idea we have been working so diligently to help him understand. I thought I was being really clever and with an act that would make most childhood psychologist proud I purchased two Plan City doll houses to help him become more comfortable with the idea and it would allow him to “play” at one even if we were residing at the other. The “city doll house” was placed in the “country house” and vice versa. Well leave it to a monkey to make it even clearer to a 2 and a half year old. Liam has really been into Curious George or as Liam would say “George the Monkey” and believe it or not George has a city house where he lives with the man with the big yellow hat and they also have a house in the country. One viewing later and Liam has it down pat. Sunday night when it became obvious to him that we were starting to get things packed up he asked “are we going back to our city house?” If you have something to share with your kids hire a monkey or better yet buy the monkeys DVD.

Comfortably Numb

My parents came in from Michigan for a week long stay. The kids got to spend time with them and my mom did most of the cooking over the weekend allowing Gretchen and I to get some work done and to spend more time with Liam. Gretchen’s mom picked them up from the airport and did the grocery shopping so that the house was ready for everyone. Moms were changing diapers, feeding Ella, letting the dogs out and there was less for Gretchen and me to have to worry about. It was nice to have family surrounding us and lightening the load. We had a really nice time and it just felt good. The weather cooperated and it stopped raining late Friday afternoon. I doubt that our parents have any idea how good it felt for I know that it did not show on our faces or in our actions. The truth is that we are numb and focused almost to the point of having tunnel vision. While things are happening around us like conversations, cooking, questions, hurricanes, train wrecks, fires, etc. they go almost undetected. It might appear to those around us as if we are giving them the cold shoulder treatment but it really is not intentional. We are exhausted, scared, and determined. We are giving all of the emotional energy we have to Liam and Ella and whatever may be left is sucked from us by an upcoming test, hospital visit, or in the case of this weekend the surgery to remove Liam’s tumor that is now just 24 hours away. I also doubt anyone knows how close we are to breaking at any given moment. A simple hug is enough to cause us to let down our guard and to let the emotions take us over. We cannot allow this to happen in front of the children or each other so we avoid situations where we may be weakened or overwhelmed. I personally avoid long hugs with anyone. I know I won’t want to let go and the security of a hug with someone I care for makes it seem safe to set the pain and the fear free. The trouble is that I know they will be all consuming and it is better to keep them in the bottle that is my heart and soul. We thank you for standing by us this past weekend and for just being there. You knew to give us space, hugs, food, and simply your warm caring presence. We know now all to well the pain you feel as mothers as your children hurt and you are helpless to make it stop.

Liam’s First Fish

Our neighbors the Traylor’s told us that we could fish on their spring fed pond anytime Liam felt well enough and on Saturday that is exactly what we did. Grandpa Rich and I pulled Liam and Ella in the red flyer wagon down the trail that leads to their house. Barry or “Cowboy” as Liam affectionately calls him set out 2 small children’s fishing poles, fully rigged and waiting for worms. We brought along the worms Liam and Grandpa Rich had found by hunting under leaves and rocks in our garden earlier that morning. It was funny to me how Liam had no fear of the worms at all. He would reach in the plastic butter container that served as our worm holder and pluck them out of the dirt. He would squeal in delight when they squirmed around and tried to get away. The stocked pond rewarded Liam with a nice sunfish on the very first cast and the next two casts were just as productive. He watched in fascination as Grandpa removed the hook and gently dropped them back into the pond. “Where’d it go daddy?” I explained that the fishy went back home. “Bye fishy fishy” said Liam. It was a Norman Rockwell painting in my mind. We returned to the pond on Sunday at Liam’s request but after 2 or 3 casts he was more interested in exploring the nearby brook that is fed by the pond. Liam knelt on the muddy edge of the brook and as I worried about him getting wet he selected various rocks to toss into the babbling waters. He was being a little boy discovering nature and taking in the sounds and sounds of the environment around him. I watched his every move from just inches away and stored them deep in my memory. I doubt there is a subtlety to his movements I did not capture in high definition. He was absolutely beautiful. He was innocent. He was a curious child. He was not the boy with cancer about to have major surgery. It was not the weekend before we were to sit for hours in the waiting room hardly breathing. How could he be in two worlds so completely at odds? How could we? How could anyone?

One day when Gretchen and I were talking I told her that I thought one of the worst things about this disease and treatment was the endless ups and downs. Your child feels good, he feels bad, he looks better and is eating, you start chemo, your counts go down, you get sick, counts come up, feeling good, start chemo again, eats a big lunch, throws it up, counts go down, hospitalized, counts come up, tests, he sleeps well through the night, wake him early give him a shot, get out of the hospital, dressing change, and on the ride goes. Why is this disease that affects such innocence so unknown, why is the story not told for all to hear? Why are there so many small grass roots efforts out there that have not joined together as one to become a more powerful voice? It is children we are talking about…the ones we are all supposed to protect. Something needs to change and I hope Gretchen and I have the determination and energy to shed a brighter light upon this ugly reality that needs the type of support and focus that breast cancer and other adult cancer’s have upon them today. I learned of another family whose son was just diagnosed (reached out to us on our blog), has had his first round of chemo at MSKCC, and I my heart aches for them today. We must somehow make a difference when this is all said and done and I am determined more than ever to do just that.

Surgeon Prep Meeting

I don’t want to sleep in an attempt to prolong the arrival of our pre-surgery meeting. It is 12:15 am and tomorrow and soon we will be told how risky the surgery can be and the word in the halls of MSKCC is that this is a meeting that parents walk out of looking very pale. I know why after getting just a taste of the conversation with our oncologist last Friday as he tried to prepare me for what and how it will be laid out for us. We do not want Liam to sit in the room and hear this conversation and to see the fear in our eyes. A friend will be there to play with Liam while we hear about the risks of his surgery. I wonder how much of the conversation is due to the legal guidelines doctors are forced to operate within…everything is a disclaimer and must be disclosed making it that much harder for those on the receiving end at times like this. Dr. LaQuaglia is a very positive person and one who has made us feel very comfortable in almost every face to face we have had with him but tomorrow I sense will be a bit different. It is the big game we are now leading up to. The three rounds of chemo have just been the cost of entry to fight in this round. I would rather Dr. LaQuaglia be he at home resting and preparing for the battle he is to wage against the enemy on Wednesday May 2nd. Wednesday and the days following are when all of your prayers, good wishes, and positive energy need to be directed our way more than any of the days since we started this fight 2 months ago. Please tell as many people as you can possibly tell to keep our brave Liam and Dr. LaQuaglia in their thoughts on Wednesday and to wish them both a valiant victory.