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Wednesday, September 3, 2008

Here we go again... split between 2 worlds

Liam's day started off by waking up next to me. I woke him by playing a You Tube video of an oinking pig on my laptop as I he was lying next to me in our bed and I was answering work email. He quickly rolled over with a big smile on his face when he heard the noise and immediately put in a request for Hurricane movies. Liam has been into learning about the weather and has moved from tornadoes and lighting to hurricanes. You Tube is an amazing resource when it comes to feeding Liams never ending curiosity. Ella joined us and was asking Liam if the video I was playing met with his approval...this one Liam? this one Liam..Liam this one? He is often too cool to answer her. I can see that her world revolves around his and it is beautiful for it is absolute love but in another sense it is sad knowing that they are often not able to be in the same world. Later today this reality was to again be proven true and the pain it causes us all to be separated as a family emblazoned on the innocent face of my sweet Ella.

The call from Philomena our nanny came around 1 pm. "Babba Liam" (what she calls me -mean's Liam's father in Kenyan) "I just checked Liam's temperature and it is 101". My laptop was closed and in my bag before I even hung up the phone. I stood at the elevator of the building where our new OXO offices are located waiting for what seemed forever. First elevator full...second elevator full...third elevator full....4th elevator full but I was fed up since I had been waiting for 15 minutes! As the door started to close I yelled out this building sucks! All of the human sardines on the elevator erupted in laughter and started cheering. No doubt everyone shares my frustration when it comes to the terrible elevator service in this trendy new office hot spot. It took 2 more elevators to get one that had just enough room for one additional rider and to the dismay of all onboard I pushed my way in.

When I arrived home I went to Liam's room where he was in bed trying to take a nap. I took his temperature and sure enough it was 101. He looked up and just nodded in a way that he often does. It is his non verbal way of communicating so many things. Gretchen may have mentioned this in a prior posts. Liam's nod was intended to tell me Hi Daddy! Yes I know I have a temperature, Don't worry Daddy it's not very high, Daddy I love you, Daddy why are you here and not at work? All this in a nod and the warmth of his big brown eyes.
"Hey buddy" I said out loud. Go to sleep.
Liam pulled out his passy and said "Daddy, I'm going to take a little nap but when I get up I want to play cars and blocks with you..ok?"
"Sure Liam" I replied with a big knot in my throat knowing very well that there was no playing in the cards today. My son was soon going to be on the way to the hospital for an unknown number of days.
I left Liam's room and started gathering all of the things he would need, marbles, backpack, books, Leapster game, DVD's, pajamas, etc.
Gretchen arrived home from a meeting and went about getting the items she needed to endure a possible week long stay in a less than ideal environment. I went in to check Liam's temperature again to see if it had gotten any higher and found that it was still as it had been earlier. He woke up and told me he wanted to get up and be with me so I took him into the our bedroom and turned PBS Sprout on for him to watch. I explained to Liam that his temperature was too high and that it was supposed to be 3 points lower. He asked me Why? I then went about explaining how your inside temperature should be 98.6 and if you get a cold or you are low on white blood cells that your temperature can go up. I told him we needed to get medicine to make it come back down. He shook his head in agreement. I then told him he needed to go to the hospital and he was fine with that as well. Gretchen came in and told him she was going to take him and that they might have to stay the night and this was not what Liam wanted to hear. Immediately he started crying and saying he did not want to sleep there. Again and again he repeated this to us. It killed us to hear him say this. Again it was one of those situations where there is nothing Gretchen or I can do to make make this go away for him. It is something he has to do and has no choice. We have no choice. We explained to Liam that we would make it as fun as possible. I told Liam that mommy has a bag full of puzzles, books, videos, and projects, to make the stay as fun as possible. Gretchen knew this week was coming and after the last stay opted to be prepared this time by gathering a bunch of new objects, books, and interesting projects. Hopefully he will have many visitors to break up his days. He stopped crying but was not any happier about where he was going. I went and got the bag of fun stuff so he could focus on it instead of us getting packing bags. Ella wandered in from a walk with Philomena and wanted to know what was going on. "Daddy why are you not at work?" asked Ella
I explained to her that Liam had a temperature.
"Whhhhyyy Daddy?"
"Because he doesn't feel well honey" I replied
Next I told her that Liam had to go to the hospital and to my dismay she instantly started crying and while crying she said "I don't want Liam to go to the hospital"
So this brings my post today full circle..... back to my observation this morning about how their worlds are one and how Liam's world and hers are supposed to be one and yet they are too often split into two very different worlds. Liam must too often travel to a world where innocence is stripped away bit by bit and where life and death compete for keeps, where his best friend is not able to visit or share a laugh or tickle with him. A world he dreads and world we want nothing more than for him to one day soon be able to try and slowly forget the finer details of. Ella's word is turned upside down when her big brother, best friend, and idol is not within ear shot, not able to share marbles with her, or show her how she is supposed to do something. Our home is not a home without Liam in it and certainly not a home without both Gretchen and Liam missing from it.
Ella has asked me where Liam is 3 times and where mommy is twice. I always repeat her question back to her because she knows the answer. Where is Liam? In the hospital..Where is mommy? in the hospital with Liam. When is mommy coming home? in two days Daddy.....two days. Ella and I miss them both to the moon and back and it's only been 4 hours since I watched them pull away in a cab.

I rest assured knowing that Liam is without a doubt under excellent care when he is admitted and inpatient.
MSKCC is a world class facility but their room setup is absolutely terrible . Subjecting families to sharing a room means that more often than not one child is subjected to the depressing and disruptive noise and activity that surrounds a very sick child in the adjacent bed all night long. Gretchen does her best to insulate Liam from this barrage to his senses and memory but it is unavoidable because you cannot get away from the misery that may be in the bed on the other side of the curtain. MSKCC is one of the few if not the only major pediatric cancer center to subject their child patients and their families to this environment. Most other hospitals provide private rooms and mainly due to the possibility of infection. MSKCC requires you to be in patient after a fever while neutropenic and remain inpatient until your counts rebound but to then expose the child to other children and their stream of visitors makes no sense. It is what it is and there is no doubt they offer far superior care on many other levels but this is a true blemish that cannot be ignored. Let's put it this way...Liam has repeatedly shared with Gretchen and I that He "hates the hospital" and he is not referring to the day clinic and all of his friends there but rather to his last week long inpatient experience where he was bored, tired, and where he had an abysmal experience even though Gretchen tried to occupy his mind with countless games, distractions, visitors, etc. To a 4 year old it is nothing short of prison. Especially to one who is there due to a fever and who feels perfectly fine otherwise. A good comparison for parents might be taking your kids on an airplane trip. Toddlers can only take it for what 30 minutes before they are kicking the seat, running the aisles and irritating anyone within 10 rows of them? Now imagine being on an airplane with a 4 year old for 7 whole days! Get the picture? We are fortunate he feels as good as he does and we just wish he did not have to spend days when he is feeling so good inpatient connected to an IV pole and not able to enjoy being a kid. No kid anywhere in the world should have to endure the mental and physical abuse that children fighting cancer have no choice but to endure again and again and again. It is simply evil torture disguised as an incurable disease.