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.

Please pass the Throw Up Bucket

9:45 p.m. Tuesday, 8/26 Update

Liam just finished throwing up for the third time in an hour. Chemo throw up for Liam is a total body experience…it sounds like his toes are throwing up and every vertebrae in his back. It comes out his nose. He makes an awful wretching sound. He spits frantically to clear the throw up from his mouth while whimpering “there’s more – don’t move the bucket!” And over and over he says, “I don’t like throwing up. I don’t like it at all.” But tonight, after his third throw up session and before I had even wiped away the combo of spit, he raised his head from the throw up bucket and said in a cautiously excited voice, “Mommy – One plus one is two! And two plus two is four!” And as soon as I had him cleaned up, he curled into me and started picking out the letters he recognized on the front page of the newspaper. “Mommy – There’s my letter – and L. And that letter is for dog it’s a, a, a, D! And that’s my other letter…a W. Over there is a snake letter. What’s it’s name again?” The effects of the anti-nausea pill are finally setting in and he’s asleep covered in a Batman blanket that arrived yesterday and surrounded by little puppy, big puppy, monkey puppy, duck puppy, super soft yellow blankie and pilly the pillow which has the ever-present magic rock attached to it and a new addition, a lucky stone passed along from Aunt Franny’s son Ben. The lucky stone has a picture of deer painted on it and Liam insisted on having it reside with the magic stone.

Today was the second of two very long hospital days. We arrived at 8 and left around 4:30. We painted, weaved a complex spider web using colored plastic string across his door, booby trapped several of the cabinet doors in his day hospital room, constructed a gate using elastic string and insisted on each visitor announcing their intent before coming into his room, worked on identifying letters, visited John who is in room 26 in the day hospital this week, read his anatomy book again and again, learned how to take a pulse and took Dr. Kushner’s, asked Dr. Kushner (which is still pronounced, “Dr. Kush-shen-ner”) to explain how oxygen gets into blood by using the diagram of a heart and lungs in his anatomy book, gave Dr. Kushner an unexpected hug when he was leaving and again admonished him for not being around recently, learned where clavicle bones are located, walked with Ester to her office so that we could watch for signs of limping, played his Leapster game and was focused by how much Wall-e could recycle, drank a few sips, ate nothing, peed a lot in the cup which is always thrilling (Holy Mackerel Mommy – Look at how much Pee Pee is in there!), played with three squishy rubber balls with hair-like strings that can be squeezed, looked for places in his body where he could see his veins, read “There’s a Map in my Lap” and discussed all the different kinds of maps there are and what kind he’d like to have (one with “his” beach house on it), wanted to know how an umbilical cord works and how it fed him when he was a baby in my tummy, recited how the digestive system works from taking a bite to it becoming a stinky, moaned about the long day in the hospital, asked more times than I could count when we were going to get out, watched Curious George, didn’t take a nap, and kept a watchful eye on the Pooh balloon that was accidentally released on the second day of the 1st cycle of chemo that is still out of reach but not out of sight. The minute the first two stroller wheels crossed the threshold out of the hospital front doors and onto the busy York Avenue sidewalk, Liam fell fast asleep and was sleeping so hard he didn’t even wake up when I lifted him and the backpack containing a pump and fluids for the night from the stroller and gently placed him in the cab for the ride home. John’s mom, who happened to be outside, stuffed the trunk of the cab with all the “stuff” that goes along with Liam to the hospital and closed the cab door.

Tomorrow and Thursday should be much shorter days. It’s a good thing. We’re not conditioned for super-long hospital days and are still recovering from our eight-day hospital stay with another hospital stay on the horizon. But the long days are now chalked off the check list of things that need to happen in order to get him back to where he so very much wants to be…school. Tonight will probably be a long night but tomorrow…tomorrow is a brand new day and one step closer to being back on track.

P.S. Yesterday we sent an emissary to the inpatient side to deliver a note to Victoria. It included a reminder to get up and walk…one foot in front of the other…and a stick figure drawing of Liam with his big, silly smile. We’re not allowed on the inpatient side, just like when we’re inpatient we’re not allowed on the day hospital side. When our emissary returned from his mission, I couldn’t tell who was more touched…him for having learned about Victoria and seeing the huge smile the note from Liam brought to her face, or me for hearing how Victoria smiled.

It’s all just so ludicrous

Monday, August 25, 12:35 p.m.
We’re back at it. We’re five hours into day one of the second round of chemo which we hope is our last round of high-dose chemo. (I think he can’t receive any more after this….but it’s a question I don’t ask.) We’ll be here every day this week with Monday and Tuesday being the super long days. And after the round finishes on Thursday, we’ll be back on Friday for blood counts. We anticipate being back in patient some time next week until his body’s bone marrow recovers enough from the assault of toxic chemicals and starts making white blood cells.

Liam had a CT scan last Tuesday which looked fine. It was his eighth CT scan and his third without anesthesia. He was a seasoned pro…unfortunately. Full of questions about how it takes pictures (we’ve actually watched videos on YouTube of how a CT machine works, much to Liam’s fascination), impatience that we had to wait for almost two hours, and questions about why Dr. Kushner wanted to see pictures of his inside body. It was done to have a new post-op base line and apparently was just fine. What I’m leaving out is the struggle to get Liam to drink out ounces of apple juice spiked with the contrast fluid needed to be ingested before a CT scan but not too much before. He really despises the whole having to drink contrast activity and takes the tiniest of sips and pretends to gag on each one. Those eight ounces take more than an hour of constant badgering to get down…tiny sip after tiny sip…all while keeping a close eye on my watch to make sure it gets down by the deadline. The process starts out as a negotiation and then as the deadline approaches, shifts to more of a dictatorship. And then once we arrive at the hospital, we have to deal with the whole nervous energy leading up to having his port accessed. “Mommy, why do we have to do it?” “Do we really have to do it?” “But Mommy, it’s going to hurt!” And then when it actually comes time to plunge the one-inch needle through his skin to go into the port, I find myself levitating over my body watching the scene from above because it just so goes against the laws of being a child…or a parent. How many times have I had to restrain my sweet son while he either gets a finger prick, injection, dressing change, or some other things that just shouldn’t be happening all in the name of giving him life? But, as always, what gives me strength is Liam. Two minutes after the accessing process, he’s fine…ready to play. He still loves me. He doesn’t get angry with me or hold anything against me. He’s still my sweet son who has had to endure yet another personal invasion. As hard as the accessing process is, the deaccessing is just as awful. He hates having the sticky bandages removed from his sensitive skin. He insists that I do it, one handed, using lots of adhesive remover pads, without pulling, while he sits in my lap. And then after the bandages are removed, he braces himself and I restrain his waving arms and kicking legs so that the nurse can pull the 1-inch needle out from his chest. It’s not so much that it hurts, I think it’s more of another assault on his body and personal space he’s objecting.

He’s back up to his pre-surgery weight – 18.4 kilos – courtesy of PediaSure chocolate milk and homemade Belgium waffles made with tons of butter and whole milk. (He can eat two Belgium waffles in a sitting.) We finally got him to branch out and try a different food – chicken nuggets – which he devoured six of in one sitting which, for him, is a record. We know these victories are short lived since his appetite will be wiped away beginning today for the next three weeks. Right now he’s eating Smart Puff Cheese Puffs one after the other. He has almost consumed an entire bag which will equal 585 precious calories. And he’s had ¾ of a Belgium waffle (I brought frozen ones to the hospital with the hope he’d eat) and three PediaSure drinks (at 237 calories each). I remember the days I used to count calories for an entirely different reason. We’ve already had a conversation with Dr. Kushner, whom Liam admonished for not being around lately, about getting an X-Ray on Liam’s right knee later this week. He fell last weekend on his right knee and has been limping since…although not letting it slow him down…but because it’s the right side of his body where his original tumor was located, and because he had disease on his femur in that leg (although not in his bone marrow), and because it’s neuroblastoma which doesn’t like to give up, and because chemo can cause bone weakening…we’ll have to check it out. You know what I despise about this disease? For the rest of Liam’s life, a bump can never just be a bump…it will always need to be assumed it’s something bad. In this world you assume for the worst and hope for the best. When you see Liam and see how “normal” he looks and acts, it’s hard to reconcile in your mind that his health relies so much on the skill of the countless medical personnel. And wait, could someone please wake me up from this dream of having a child who has already been a part of two clinical trials and is going on his third?! Clinical trials? My child? You have got to be kidding me. There is just no way.

We’ve been a little slow on updates on Liam. The extra time we normally have in our schedule has been taken up with working on the Cookies for Kids’ Cancer website. It has been a very tedious, slow-going process but it’s going and it is gorgeous. The whole thing, though, like the rest of my life, has been fairly ludicrous when you look at what we’re juggling to get it all done. Writing copy while sitting next to Liam in a hospital bed, weighing in on a look of a page while waiting to be called into a CT room, staying up until 3 a.m. with my husband to get copy where it needs to be. I’m not sure if my birthday wish came true, I don’t know if we have 100 people who have committed to holding a bake sale, but it’s almost immaterial in light of the incredibly powerful e-mails we received from many friends but even more people who we don’t know but have been following our story. What is it about someone’s character to reach out to someone they don’t know and make a commitment to get involved? And one very, very special person already had her own bake sale in her office last week to win the title of early bird bake “sale-r.” She raised $100 in her office bake sale and then through her work received a matching donation to double the amount of money she raised. Our early-birder is not a long-time friend or family member, but someone who heard about us from someone else and decided to get involved.

One thing I haven’t been able to write about yet because it’s still too raw is one very special teenager we met while Liam was in patient. Victoria was diagnosed only a few days before Liam was admitted during his last stay. She went from being a healthy, trophy-winning softball player with the world ahead of her to a stage IV cancer patient lying flat on her back with no warning. For the week that we were in patient, we would see her father walking the halls. It wasn’t until the sixth day that we finally met him and he told us about his daughter. She had slid into second base during a softball game and it bothered her knee, but not enough to cause alarm. They left for vacation the next week. The pain got worse. They went to an ER to get it checked out. The ER doctor thought he saw something but couldn’t tell what and suggested the family see an orthopedic doctor. They cut their vacation short and made an appointment with an orthopedic doctor. He ordered a CT scan and told them she needed to see an oncologist immediately. They made an appointment and she was almost immediately in surgery to remove cancer from several areas of her body including along her back. Her father invited me to visit her and give her a pep talk and I immediately said yes. What I didn’t realize is that she was in room 10A, the very room Liam and I first occupied when we were brought to Memorial Sloan-Kettering via ambulance on Tuesday evening, February 27, 2007. I haven’t been in that room since and actually avoid going near it. Victoria is a beautiful girl with long, curly dark hair and soft, brown eyes. She was lying in completely flat in bed. I went over to her side, held her hands tight and told her about Liam and how we have never, ever, ever thought anything other than Liam will be fine and she too will be fine. I told her that these early days are the absolute worse. I told her that she’s a competitor and she knows what it means to be up against a tough team and how to win and that she can win. I told her to stay focused. I told her I love her and will be here for her and her family.

The next day Liam visited her with his candy cart and bestowed her with lots of candy from his candy store while literally bouncing around her room like Tigger. She smiled. He told her he loved her. And again I was reminded why we’re doing Cookies for Kids’ Cancer out of sheer determination and conviction. We simply have to.

My Birthday Wish

Wednesday, August 20th is my birthday. I have two very special birthday wishes. I’m sure everyone knows one of those wishes since it’s the same wish we all have for sweet Liam. The other wish came to me today as I was restraining a kicking, screaming, crying, thrashing Liam who was trying to avoid getting a finger stick to check his blood counts. (They were, by the way, very good and we might be starting the second and hopefully final round of chemo on Wednesday.) My birthday wish is to hear from 100 people by Wednesday who are committed to holding a bake sale in support of pediatric cancer research. I can’t think of anything I want more than to know that everyone who has been following our story wants to get involved. And I think it’s a reasonable wish. If every person who reads about Liam e-mailed us to tell us they want to hold a bake sale, we would easily surpass that number. If each of those people convinced two of their friends to join the cause and hold their own bake sale, then we’d really be getting into some impressive numbers. If we can sell 96,000 cookies in a few weeks, why couldn’t we hear from 100 people who want to hold a bake sale? And the bigger those numbers are, the more we can fight back against pediatric cancer. I hope my birthday wish comes true. I need my birthday wish to come true.
Gretchen

gretchen.holt@gmail.com

We're Out!!

We drew some blood for a CBC around 9:30 last night to check if anything had changed from the morning.
Number needed to be released: .5
Tuesday's ANC: 0
Wednesday's ANC: .1
Thursday's ANC: .2
Thursday Evening ANC: 2.62
Result: We are out of
here!!!!
Daddy came to help us home. Liam was thrilled and immediately sucked down 8 ounces of chocolate milk in excitement. And we rejoiced to be back together.
A cab was immediately available and by the time the door was shut, Liam was asleep.
It is good to be home.

Some Pictures

A rainbow

A rare nap

Liam and his roommate John