Wednesday May 2nd - Evening

We’re back on the inside. It’s very strange for me this time. I recognize where I am. It doesn’t look strange and frightening any more. I know the routine. I know what to ask. I know where to find things. I’m comfortable with the minute-by-minute life of the inpatient world and the energy it takes to be both caregiver and entertainer. Liam also recognizes where he is. He’s as equally comfortable with the routine and knows what to expect. It reminds me of the Sesame Street song, “Who are the people in your neighborhood.” This is one of his neighborhoods. He knows the people who are in it, the routine, where the really neat things are like the smoke detectors, strobe lights that would indicate a fire, and water fountains. He knows who is new and who isn’t. He’s happy to see the people he knows and happily greets them with a huge smile. He notices if something has changed - the dryers in the family laundry room now have signs on the front of them and a different venting system. He knows where the playroom is and how to get there from anywhere on the floor. He knows there’s a shortcut through the Family Pantry to the playroom. And he knows we can’t go home because he has a temperature. He keeps saying with frustration in his voice, “Temperature! Go Away!” He’s not happy, but he’s not sad. He’s accepting. He was fascinated with the x-ray machine that we had to visit in the morning. He helped clean the cheese puff crumbs off his face, normally a dreaded task, in preparation for getting his picture taken (what I call x-rays). He was happy to ride around in his red wagon and he was especially happy to play with glitter “sparkles” all day. For some strange reason I can still hear the Britney Spears song that was playing as we entered the X-ray room repeating itself in my head. Now that I think about it…maybe it’s not so strange I can’t get it out of my head since the song was “I did it again.” Here I am, doing it all over again…the hospital routine…but I feel much better at it than I did the first time.

Some Thoughts to Share:
Since Liam’s diagnosis, we’ve slept together every night. He panics when I’m not near him at night. And invariably several times throughout the night when we’re sleeping in the hospital, he wakes up and in a sleep-laden voice says, “Mommy – Rub Feet.” Last night he added a new twist, “Mommy – Rub Feet and Hold Hand.” I stretched as far as I could to do as he requested. He fell asleep with me hands massaging his tiny feet. His feet still amaze me like the first day I saw them and I couldn’t think of a greater pleasure then to rub them.

Some days I wake up and forget for a few seconds that I’m living in the world of cancer. And then I remember. When I’m sleeping in the hospital, I never wake up forgetting where I am.

Crying is a universal sound, no matter where a child is from. Our roommates are a little girl who looks to be about 7 and her father. Their accents make me think they’re from Russia. I don’t recognize the brand of shoe the father is wearing which I can see under the fabric screen dividing the space in the room. They’d definitely not from here. The sounds of her cries are the same as every other child on the floor. I wonder if they’re here for 3F8 treatments which aren’t available anywhere else.

Another little boy who is not much older than Liam and also a stage IV neuroblastoma case is also inpatient. He was diagnosed a few weeks after Liam. He’s only one chemo treatment behind Liam. Mom is very pregnant – due in a few weeks. I really like her and under normal circumstances could see us being friends. It was nice to see her here and we greeted each other like old college friends, even though we barely know each other. We’re permanently bonded together and can look at each other and know how the other is doing.

Liam saw two women knitting in the family pantry. He looked at them and asked me what they were doing. I told him and then he asked them what they were making. When they held up their work, Liam looked at them and said in his sweet little voice, “Ohhh – Mommy – Look! Pretty!” The women laughed, Liam smiled, and for a moment all was well. But that’s what life is like when you have a child with cancer…picking out the good moments and savoring them.

Two patients who were here before on the floor are no longer here. They didn’t win their battles and both passed away within days of each other late last week. Their rooms were next to each other. Both of them seemed very, very sick but I never knew what kind of cancer they had, their condition and certainly never would ask. How sick someone is is irrelevant when you’re on this floor. Whenever Liam would see either of them outside their rooms, he would stop and say hi or wave from his wagon. He didn’t see their cancer….he just saw two people with smiles. He even serenaded them with “Twinkle Twinkle Little Star” one night. He told both of the boys that he loved them. One of the boys gave Liam two Pez dispensers during our initial stay. I will keep those Pez dispensers in a safe place for Liam until the day years from now when he’s old enough to want to know about all the people who helped make him well. I’ll tell him about the boys from “The Hot Spot”, the place they named the corner of the floor where their rooms were located and marked with a sign, who were his friends. The other boy would give Liam lollipops every time he saw him and Liam would eagerly look for him to be sitting outside his room in hopes of a fresh lollipop. I can’t walk by their rooms. It hurts too much to acknowledge they’re not there and if I don’t see their rooms, I can pretend they’re still here.

One thing that helped boost my spirits last weekend was coming home to a collection of cards, letters and notes from friends and strangers who have heard about our battle and decided to join the fight. I can’t tell you how much those communications mean to me…every card feels like a hug and I read and reread each card over and over again. All weekend when I was feeling like a hollow shell with not much left, I’d go to the place the cards were carefully arranged and read them all again. I can’t believe we’re still receiving cards. I truly thought that people would forget about our battle by now and have grown weary of sending cards to us. Now that I know how helpful it is to have a constant stream of communication from the outside world when you’re in the midst of fighting a war, I wish I knew a soldier in Iraq I could send cards to. What occurs to me is that by receiving so much goodness from others, I’m learning how to be a better person myself.

Liam’s birthday is coming up. He’ll be three on May 13th. Every year on his birthday I’m going to show him all the cards, letters, e-mails, t-shirts, special packages, mementos, blood counts, test results, pictures…etc to try to impress upon him the power of good and the huge support network of people who surrounded him to make him well. He needs to know that it took a huge city of people to make him well. He needs to carry that spirit with him throughout his life. I feel like I know my son so well and yet he isn’t even three. Liam keeps asking where his birthday is and to bring it to him. I wonder where we’ll be this May 13th. I wonder what will be happening in our lives that day.

He and Lee share the same birthday, something that doesn’t surprise me knowing how many other ways my life and Lee’s intertwine. Being able to ask her if she had the same feelings about certain events, scary thoughts, scary odds, etc while caring for Bob is so comforting. Lee and I have a permanent bond that is unbreakable – we both know what it’s like to have your life changed in an instant and be in a free-fall state while still needing to keep it together for your children. Lee always knows exactly what to say, what not to say, when to say something, and when not to.

Gabriel wasn’t here today which greatly disappointed Liam. He spent the day looking for him and the floor polisher. When Liam and I were in the Urgent Care Center last week, we ran into Gabriel. We hadn’t seen him in quite a while, at least five weeks, but Liam knew exactly who he was and happily called his name when he saw him. After a visit which included Liam asking him where the floor polisher was, Gabriel showed me something he has been keeping in his wallet since Liam’s initial visit….several lockets of Liam’s hair. Liam gave Gabriel some of his “magic hair” when he hair was falling out post chemo round 1. As he carefully took the locks of Liam’s blond hair out of his wallet that were carefully wrapped in a piece of paper, I smiled in amazement that my son who isn’t even three could make such an impact on someone.

Jessie and her parents came to see us today. Liam was the first one to see Jessie’s Dad and immediately yelled, “Jessie’s Daddy!” when he saw him. He was so happy to see the three of them. They were light rays of sunshine on what was a troubling day with the surgery postponed. Seeing them is like seeing family and Jessie and her family will always be a part of our family from now on. One thing that continues to amaze me about Liam is his memory. He hasn’t seen Jessie’s brother since early March but today he asked where Robert is. They came bearing gifts for Liam…early birthday presents. After they left, Liam opened the present. He stood over the gift bag, leaned over and pulled out a gift. “OH WOW! A raincoat! With Frogs!” The irony is the one thing I need for Liam is a raincoat. Several days we’ve been caught in the rain without a raincoat on the way to or from the hospital. How did they know he needed one? I couldn’t tell who was more excited – me or Liam. And then he pulled out a hangar with a frog on it and said, “Mommy – A Hangar! Look! A Hangar!” He was pretty darn impressed with the hangar….and insisted I hang up the raincoat on a cabinet door handle next to his bed so it could be an arm’s reach away. Again, I find myself so humbled by the outpouring of love and support for our little fighter.

It was 5 p.m. before I realized I hadn’t eaten today. Time means nothing when we’re inpatient and food, as Lee said, is just fuel. I’m fortunate that the past three weeks there has been a lot of delicious high-test fuel brought to us. I feel like I’m all tanked up and ready for a long hospital stay associated with Liam’s surgery.

Gretchen

Wednesday May 2nd Afternoon

Orange Sky

I came across this song close to a year ago and was immediately touched by it. Strangely it became one of my favorite songs and I shared it with close friends. Orange Sky was even my annual submission to a friends holiday music compilation CD that he sends out to close friends and colleagues as a gift. Needless to say today I have an even stronger emotional attachment to this song and find it to be one that I will always cherish. Today it is as if Liam wrote this song to Ella and the picture above was what made me think of the association and the overwhelming desire to share it with all of you. I think it will move many of you in a similar way once you have actually heard it. Thank you Alexi.

Well I had a dream
I stood beneath an orange sky
Yes I had a dream
I stood beneath an orange sky
With my sister standing by
With my sister standing by
I said Sister, here is what I know now
Here is what I know now
Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love
But sister you know I'm so weary
And you know sister
My hearts been broken
Sometimes, sometimes
My mind is too strong to carry on
Too strong to carry on
When I am alone
When I've thrown off the weight of this crazy stone
When I've lost all care for the things I own
That's when I miss you, that's when I miss you, that's when I miss you
You who are my home
You who are my home
And here is what I know now
Here is what I know now
Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love

Wednesday May 2nd Update

SURGERY UPDATE

The roller coaster I have mentioned in the past just took another turn. Due to a temperature that popped up again yesterday morning while at the hospital for pre-surgery screening and in the evening just after we returned home and got settled in, Liam’s surgery has been postponed to what looks to be Friday at the earliest. Liam was admitted to MSKCC again last night and will likely remain inpatient until surgery. Tests are being done to understand what is causing the fevers. The fever first appeared Sunday night and caused us to come back to the city around midnight for a visit to the urgent care center at MSKCC for antibiotics and blood cultures to see if he had a central line infection. It is the most common infection for kids with a central line but the cultures came back last night as negative so it does not appear to be the cause. Now we are trying to pinpoint the cause of the temperatures through urine and blood work as well as a chest x-ray. It could be a virus and this might explain why blood cultures so far have been negative since they cannot detect a virus only bacteria. I know that many of you are thinking of us today so I wanted to let you know that as of right now we are in a holding pattern and will be until the fever source has been identified. We were as mentally prepared as possible for the surgery today and this recent turn of events is just further proof of just how unpredictable our world is these days. The good news that Liam never disappoints and tends to do something to take our mind off of the daily uncertainty by proclaiming some new discovery or surprising us with his intellect and sense of humor. I just received this note via Blackberry from Gretchen while writing the above: HE JUST PEE PEED IN A CUP! The exact amount we needed. Lindsey (his nurse whom we adore) and I got teary eyed watching him pee.

A Note From Gina

I am sitting here writing through the tears in my eyes. For the past couple of months and especially of late, I have been able to get just a small sense of what Gretchen and Larry and every parent of a sick, helpless child feel everyday...and it really sucks.

I have had the privilege to spend some real quality time with Liam. Somehow, for some reason, we bonded over and episode of Calliou or Curious George...who knows...and it doesn't really matter. And now, I truly feel his sweetness and his suffering. I wonder why I didn't try to spend more time with this special family and this very special little boy before all this happened. It can make me sad to think that it took an illness to strengthen a friendship, but instead I will be happy for the bond.

Today was especially hard on my friends—and myself as I realize now. It started in the day hospital early this morning. Gretchen and Larry were to meet with the surgeons and asked me to play with Liam so he wouldn't have to hear the conversation. The day started with a total surprise, when asked who he wanted to come with him to get his blood drawn, Liam answered Mommy and Aunt Gina. Then, when the consultation with the surgeons started a bit later, a drowsy Liam sat on my lap while rousing himself to his environment. A sippie cup full of magic juice later, it was on to the playroom. Several things really touched me about this day, and while they may seem small and insignificant to you, they were huge for myself and for Liam—or perhaps for our relationship. If anyone has spent anytime with Liam of late, you'd know that he is never more than a tubie length away from his mommy...but he will stay with me for small periods of time (I chalk this up to the fact that I never really grew up and relate to any level child because I pretty much am still one at heart). In the playroom, he sat on my lap while playing a rousing game of Bingo. To give you an idea of the scene, picture a bunch of 3 to 5 year olds around a table, most of which cannot read the letters at the top of the board. The highlight of the game is spinning the ball cage round and round until the 5 numbered balls drop methodically down the ramp. Liam was so excited he kept flipping his bingo board upside down and giggling. It was then I realized we had a leaky diaper situation. Now, nobody changes Liam's diaper except Mommy and Daddy (and maybe grandmas). I had to explain that they were talking to the doctor and couldn't do it, but that I could. It's as if he senses what is going on, but to my astonishment, he agreed to let me do it...I guess the alternative didn't feel so good....but rather than get upset, he obliged...and let me tell you it was a stinky! I couldn't believe it.
Then after playing a while, one of the nurses, Emily, came to find us. She wanted to give Liam his Tylenol before his blood work (it is liquid and is administered through a syringe-like contraption minus the needle). He kept saying, "No, Mommy do" through the passie that is permanently pursed in his lips. Emily tried to explain why we needed to do it before mommy got there. We both told him how proud Mommy would be if he did take it. We "tasted" it and told him it wasn't the bad one, but the good tasting one. Then finally, through tear-filled eyes, he said, "No, Aunt Gina do it." Again, I was shocked, and touched. As I said before, it's as if he realizes something is up and that everybody is a bit more "touchy." The kid is very perceptive...and no matter what you give him or offer him, his response is a sweet, high-pitched, "thank you" or "no thank you"—even if Mommy just gave him medicine. It kills me really. So, I think he is adapting his behavior for his family, because he knows something is amiss. Crazy really.

Anyway, a little while later I left the hospital (at 68th and York) and walked down to 59th and Lex for the fresh air and to catch the subway there. Only then did I realize, that I had actually driven in to the city and parked my car on 70th street by the hospital. I guess I was a little pre-occupied with thoughts of Le Petit Prince—worrying about the big day on Wednesday.

Sadly though, I just found out that surgery MAY be postponed because Liam ran a temperature late this afternoon and was admitted to the hospital. I can't tell you how upset that made me. I want him to have the surgery already, to have the poisonous tumor removed from his little body and for him to be on the road to victory over the evil that has waged a war on this valiant young soldier. This soldier, though is tough, he is a fighter. And he, along with this whole army he has backing him up, is already paving the way.

Onward!
-Gina Provenzano

Tuesday Evening May 1st

NEW PICTURES ADDED TO GALLERY

I added over 30 pictures to the gallery late last night ok maybe it was actually this morning since there was no way I could sleep. The pictures are mostly of Liam since he had been diagnosed. Gretchen asked that I add a few of Ella due to requests from many to see what an adorable lil’ sister she is. Enjoy

Tuesday Afternoon May 1st

Long day……met with Liam’s surgeon and walked out feeling confident and better than had been expected. Gretchen and I managed to keep it together right up until the very end when we asked him to make our son better. Liam received red blood cells from one of you generous donors along with several medications to prepare him for the surgery. Time today seemed distorted. Seven hours flew by like 15 minutes and it feels as if there is not enough time in the day today. I want time to stand still today so that I can do a million things with Liam. It seems like we should be doing so many other things the day before a very scary surgery and not spending 7 hours of the day in a bed hooked up to a pump. I kissed and rubbed Liam’s head what must have been hundreds of times today. I felt like I had to be touching him in some way the entire day. Gretchen and I are both on edge and are trying our best to keep each other centered. The cab driver on the way back from the hospital was one of NYC’s worst and I almost climbed through the small opening into the front seat to correct his attitude after he rudely told us to roll down the windows instead of using the a/c. Long story short the air was turned on and the windows rolled up after I think he realized the scale was not tipped in his favor.

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.