Best Day

Henry had a great day yesterday. I arrived to relieve Tara just after my mother and Sophie had come in with Chick-fil-a. Sophie and Henry were happily playing on the floor. We had a couple of special visitors for the afternoon come by as well and shortly after their arrival, Henry was unhooked. He led us all on a trip down the elevator and played in the halls of the children's hospital. Everyone that sees him is amazed by his energy. He rode his mogocycle for such a long time and then had energy to spare for playing trains, garbage trucks and for making s'mores (the chocolate was his favorite).


There weren't any outbursts this afternoon. No furrowed brows, fits or accusing looks. Just happy Henry. He was relaxed and smiled and laughed and played like any three year old. It was so healthful to watch. It was his best day in a long time.

Last Day

Some old friends from Pittsburgh sent the girls a care package. There was a neat bracelet kit inside that allows you to slide letters on and off of the bracelet to make it say different things whenever you want. Sophie and Anna both made their own, then put one together for Henry that said "LAST DAY". He proudly showed it to everyone today.

Henry is doing great, more and more active every day. His legs are very weak from being essentially immobile for the last 2 weeks, so he's very unsteady on his feet, and has actually fallen a couple of times when he got away from himself. He complains that his legs hurt if he's up too long, but had endless energy for playing on the floor. He's also been riding his "mogocycle" around the floor at the hospital, which has got to be good therapy for those legs. We know he'll bounce back soon.

He'll be discharged on three antibiotics, to be continued at least until the next admission. He also will need IV nutrition, as he's eating and drinking nothing at all right now. We've been told it takes a few weeks for that to come back, and since there's no talking a 3 year old into eating when they don't want to, we're trying to roll with it the best we can. He tolerates the TPN very well, and his weight is stable.

I am again feeling the anxiety we had leaving the hospital after his first chemotherapy. His immune suppression is much more profound this time, and even though his numbers look good, he's at risk of serious and aggressive infections. This is why they've asked us to stay within a few miles of the hospital - if he gets a fever even fifteen minutes can make a difference between a nuisance admission and a life-threatening infection.

Our time at St. Casimir's will include lots of medical time - appointments, testing, and medications. I don't anticipate that our time there will be particularly restful for Bryan and I, though I can't wait to get our whole family together for longer than an hour. More than anything I'm looking forward to seeing this brave little soul get out of the hospital and see the world again. He deserves it.

Man-to-Man

My mother spent the day with Henry today while I came back to Hagerstown to be with Anna this evening. She and I are going to her first spring soccer practice tomorrow. Tara and Sophie headed back to Baltimore after school today to relieve Mom and to kick off our weekend together.

Mom described a good day with Henry, similar to recent days, filled with playing and a brief adventure off the floor. Henry's beginning oral medications as part of our transition to out patient care, hopefully starting Monday. They've not been easy to get in him, but he's slowly getting better at it again. The M&M and Apple Juice chasers help.

So tonight, Mom is at St. Casimir's with Sophie, Henry and Tara are at the hospital and Anna and I are spending the evening here. Nothing like a little man-to-man defense.

Life's Journey

Henry rested well last night and is still asleep this morning. It's left me with a preponderance of time to think. It's the quiet and lonely times that leave me with wandering thoughts. It makes me think they're always there, but just require solitude to emerge...

Cancer sucks. It robs you of your expectations for life. It cheats children of a carefree childhood. It does not quietly assume your life, but sideswipes it suddenly and abruptly. An unexpected result, however, is that some of those cherished expectations were actually doing some cheating too, binding our daily actions to a possible future, of which there was no guarantee. These expectations had been driving our daily behavior to a destination so quickly that we could not look out the window to see the beautiful scenery passing by.

Since Henry's diagnosis, we've been forced to take back roads instead of the highway and to drive well below the speed limit. We've had to jettison the cargo of our expectations that previously felt so necessary. Our map blew out the window miles ago and we're navigating by feel based only on our moment-by-moment experiences. We're more apt to stop and take in the vistas at the side of the road and while there are bumps, to be certain, they are now serving primarily as a means to appreciate the smooth roads when we encounter them.

Henry's tolerance of his Cancer is teaching me to live with appreciation, compassion, grace and awareness. Life has it's share of pain for each of us. Each person's idea of distress is only relative to his own experience. We cannot experience the heights of another's joy or appreciate one another's suffering without some reference to it. These experiences cultivate empathy and compassion.

By recognizing our journey for what it is, our Life, we recognize that clearing the road of our expectations and allowing it to unfold is the only Way. Before Cancer we had our eyes squarely on the road ahead of us. We didn't even realize we each carry with us an extra passenger, reminding us that this journey must end. We must pause to pay heed, even be grateful for this reminder instead of ignoring it or attempting to avoid it. In so doing, this extra passenger has instead become our guide. It is only by learning to look Death in the eye, that we can see and understand Life more clearly for what it is. While we thought the important work was to get to a destination, it was actually in learning to loosen our grip on our expectations, enjoy Life's Journey and live today. The important work is actually learning to die.

And I said, "Please"
Don't talk about the end
Don't talk about how every living thing goes away

She said, "Friend,
All along-
Thought I was learning how to take
How to bend not how to break
How to laugh not how to cry
But really
I've been learning how to die
I've been learning how to die"

-Learning How to Die, John Foreman

I happened upon this when writing this post. I found it insightful.
Learning to Die - essay by Bro. David Steindl-Rast O.S.B.

An Active Morning

Increasingly Henry is playing more and sitting in bed less. There is less pain, less rash, and less coughing. We're peeling off the medications he's been on and turning down his pain medication slowly Today was our first day with his ANC over 2,000 and we discovered that we need three days above that threshold before we're released. So we're hoping for Monday provided there are no hiccups.

Henry was unhooked for a while today. We went down and picked up some pictures from the photo lab in the hospital here. These were Henry's first printed pictures taken from a disposable camera given to him by the transplant team here. Among the pictures of the closet, his medicine pumps and some mystery photos, he was able to capture several visitors, his oncologist, several of his favorite nurses and his parents. We placed them in the provided album and they're now the focus for any visitors.

When we were coming back from our adventure out, the receptionist on the oncology floor handed us a package from Amazon.com. We proceeded to open it right in the hallway, in front of several nurses who are generally so sweet to Henry. They watched him as he opened new Max and Ruby videos. This promptly cut short our walk and he's now resting quietly watching his second of the three. It was such a nice surprise for him to have and it arrived at an opportune time.

Later today we plan on some construction paper activities and perhaps a repeat of this morning's enactment of wreck-the-cars-on-the-train-track. Good spirits abound and we're looking forward to some easy days ahead.

Freedom

We haven't had much time to write - for a good reason. Henry has been busy playing on the floor and touring the hospital, unhooked. All of his old activities that he loves. It's been refreshing to see. So, this post will be brief, but know that Henry is doing great now and recovering well.

"Daddy?"

"Coming Henry!"

An Unpayable Debt

Henry is doing much better. While he's still swollen and having pain, he's become more energetic and active which is heartening to Tara and me. Yesterday, he actually sat up for a while to play with a new truck. He giggled and for 20 minutes, I think he forgot where he was. A short time later he was hiding from the nurse, a very good sign that the old Henry was soon to return.

The mucositis, which is subsiding, has taken a backseat to his body rashes. He has some pretty severe itching and I can only describe the looks of them as hot and very uncomfortable. Some areas remind me of a severe sunburn where his skin has begun to peel, some of it bleeding. Fortunately the morphine keeps this pain somewhat at bay as well as constant lotion on problem areas.

He was awake until 12:30am this morning, but then quickly fell asleep after a long awaited bowel movement and after the nurse took down his blood transfusion. He slept well after that, cranky during his 4am vital signs routine, but still down now as I'm writing.

Sometimes I try to imagine this experience without some of the support we've had from family and friends. Emotionally we'd be strung out and tired, alone and stressed beyond belief. We'd be constantly worried about the girls, and I'm certain we'd not be getting near the rest we need to run this race.

I would have never thought it, but the help of strangers has been of a tremendous support as well. The Believe in Tomorrow Children's Foundation, with nothing but word of Henry's illness, immediately put us up for many nights within minutes of the hospital. Accommodations have been convenient, friendly and complete with meals and friendly and empathetic staff and volunteers. They provided us with our recent retreat to Ocean City as well as our current lodging.

Except for the time taken for our care of Henry, Tara and I just spent a nice weekend with the girls and my mother, all together in a fully furnished apartment within a five minute drive of the hospital. These accommodations, collectively called the St. Casimir House, are reserved for patients needing to stay close to the hospital during long treatments, of which, believe it or not, Henry's is on the short end. We'll keep this apartment to use at our convenience for the remaining duration of Henry's high dose chemotherapy and stem cell transplants, another six weeks. It's near the harbor, safely located in Canton and is near amenities like groceries and pleasant areas for walks. The also provide us parking across the street from the hospital entrance which saves much time and cost. Henry will join us when released between and immediately after treatments. It's a wonderful home away from home.

So while I know no one expects returns, we'll forever be in debt for the love, support, and boundless help we've received. We've tried to graciously accept it, use it to keep our family afloat, and with humbled hearts to learn greater compassion and caring for the community around us which is ever so much larger than we could have imagined.

The Corner

We haven't yet rounded it, but I think we can see it.

Henry had a very bad day yesterday. Everything had worsened. His pain was not well controlled. His rash has expanded to close to half of his body, and he was scratching it uncomfortably often. His mouth is full of sores, and his entire mouth and lips are swollen from them. His drool and mucous had become more bloody again (in line with his dropping platelets.) He has been sleeping so much on his right side that his right arm and face is swollen and his eye almost swollen shut.

I talked to the doctors about being more aggressive with his pain control, and they made some larger changes to his doses. He had a much better night, and is smiling for the first time in a while this morning. (Of course, who wouldn't smile with Aunt Molly entertaining!)

There are some bright spots. He hasn't had a fever for about 24 hours. He seems to be drooling less, and therefore coughing less frequently. His white blood cell count almost doubled to 110, which probably accounts for the improvements.

I don't want to jump the gun, or count our chickens, or any other cute phrase you can think of - but I think we're close to rounding the corner. It can't come soon enough.

Our Little Gentleman

Henry's scans and tests yesterday came back negative. We're thankful for small favors. This was some good news in the midst of this nasty mucositis. Henry's morphine drip has been increased again several times and much of the time now he's asleep or glassy eyed. Nobody likes to see their child glazed over from medication, it's far better, however, than being in pain.

At times when the pain overtakes the medication, Henry cries and is angry. "Daddy, I'm not feelin' good." He grunts to display his frustration over it. I can see him clenching his body as his scalp reddens, his temperature increases, his blood pressure goes up, and his heart rate tops 200 beats a minute. The first time I see this any given day, my heart rate follows in kind. I begin to be a bit more calm as the pattern repeats, but there's nothing really relieving about that.

Despite this, Henry still performs his 'jobs' for the nurse, helping her with vital signs. Overnight when he was getting his blood drawn for labs, the nurse was fumbling in the dark trying to reach his tubes amidst the many lines running into him. All on his own he lifted his blankies to ease her search. It was such a kind thing to do for him to notice her needs when he is in such pain. So he gets angry, so he is frustrated, but that was real character.

Ampho-terrible

It looks like we have a few more rough days ahead of us.

First, the bright side of things. Henry's pain is much better controlled. We've been adjusting his morphine drip a couple of times every day. Now, when he is awake, he says that he's not in any pain, and he seems to be sleeping more comfortably.

Secondly, his total white count was up to 60 today. For the last few days it's been undetectable (reported as <50), so this is a step in the right direction. This is much more likely to be leftover white cells that left the marrow, rather than the new ones from the transplant, as it's still too early to expect them to show up. But we'll take them from anywhere! Every cell helps...

On the flip side, Henry is running fevers constantly, generally 102-103 degrees. This concerns his doctors who plan to adjust his antibiotic regimen. He's already taking zosyn, amikacin, and fluconazole. The plan today is to increase the dosage of the amikacin, and add flagyl and amphotericin. Amphotericin is an anti-fungal medicine, of which I remember nothing from medical school except it's nickname, ampho-terrible, named due to it's uncomfortable side effects. There is now a coated form of the medicine that is supposed to have toned down those effects, so we will hope that he tolerates it well.

He had a CT scan of his sinuses and chest this morning, followed by an ultrasound of his pelvis and abdomen. They doctors are looking for a source of the fever, tho most often one is not found. We haven't yet heard about the results of the studies.

Henry is also struggling with multiple rashes. He has an itchy rash in his groin, we believe from one of the chemotherapies since that one has happened once before. He has a separate rash all over his chest, where we weren't able to clean as well (due to his Hickman catheter) when he was getting his four-times-a-day baths for the thiotepa. Tho he does not seem bothered by the rash, it's fairly impressive looking, and I can't imagine what would have happened to his skin without all that bathing.

In addition, he's got a bit of thrush in his mouth now. He's not complaining about that currently, but does complain of throat pain especially when he coughs up some mucous. The mucous is less bloody today than yesterday, but I'm not sure why.

I have mixed feelings about listing all of this information. I know that it is disturbing, and it is not my intent to keep you all up at night. But I feel a profound need to give voice to Henry's struggle, and Bryan and I are the filters through which that happens. Since Henry can't speak for himself, we need to help him tell his story. It's a story of courage, resilience, love, and strength, but it's unfortunately also a story of pain, fear, and loss. It breaks my heart to see him go through this.

Overnight

The night nurse just completed midnight vital signs. Henry began complaining to her that he wanted me to do his temperature, as he typically does. The rattling in his chest gave way to coughing and he began spitting blood. The nurse looked into his mouth and Henry's gums have begun to bleed. He continued coughing and spitting for about 5 minutes. She will check his blood again near 3am, looking for the need for additional platelets which were transfused earlier today as well. We changed his bed sheets as he's been sleeping without a diaper because of a chemotherapy induced rash from contact with it.

The doctors warned us yesterday that his mucositis is going to continue worsening for a few more days. We may need to increase his pain medicine in order for him to tolerate it. We've already done so nightly for the last three evenings now before bed.

As he calmed down he said, "I don't feel very good." I helped him push his pain pump a time or two. He seems to be resting more comfortably now, quietly breathing.

---

Early Morning
The rest of Henry's evening went without major incident. He coughed a little more and had more to spit, but in between he slept reasonably well. He did have one more acute bout of pain this morning. Usually Henry has a single complaint but today he said that most everything hurt which prompted me to request that his morphine be increased.

We've acclimated to much of what we have to do in the hospital but the effects of this chemotherapy, while we understand are temporary, are difficult to watch.

Henry's Room: It's a Good Thing

It's been a bit of a rough day for Henry. We're dealing with, in no particular order: a fever, mucositis which causes him to drool instead of swallow, some intermittent nausea, and a whopper of a rash. Fortunately, there are ways of dealing with all of these things. Henry is (understandably) grumpy at times, but during his good periods is his usual sweet, inquisitive self.

In his spare time, Henry has been working directly with Martha Stewart Living Omnimedia to produce the followup special to Decorating your Jail Cell, which will be titled Decorating your Hospital Room. We've had a lot of fun adding stuff to the walls to make it feel fun, and have had a lot of help from friends and family. Apologies to those of you on dial-up, as this will take you a while to download. (Honestly, are you that much of a cheap-skate?)

Henry misses Anna and Sophie, so we added these to their room so that we can talk to them during the day.


This is our Lightening McQueen wall, which everyone who comes in the room loves.


This banner was sent to us by a Girl Scout Troop in Kansas. Thanks, girls!


This is the biggest (and loudest) bunch of balloons I've ever seen in my life.


These were sent by the billing department at Tri-State. They always send something for the walls.


Henry has decided to forgo nursing school, and instead wants to be a trash collector. He graciously informed his Grandma Linda that she can ride on the back. He's really enjoyed this poster, with him driving, and Grandma as sidekick.



We're hoping Henry will have a better day tomorrow. It will still be several days before his white blood cells are at the detectable range. In the meantime, there's lots of things in his room to make him smile.

Don't Worry, Be Happy

We had ordered some new videos that finally came yesterday and it was a good thing. Henry spent all day in bed and save for his Granya and another family friend coming by, we watched TV. The videos were not the only thing that came to cheer Henry. He received some huge balloons, one of which sang the song, "Don't Worry, Be Happy". The smile it brought was terrific.

Henry is now on a morphine drip to help ease some of the discomfort he is experiencing. He also has control of a bolus of morphine to help any more acute pain. Yesterday he was also started on his IV nutrition or TPA, as he's not been eating enough for days now. The cells in his mouth and esophagus are sloughing off due to chemotherapy and this creates a mucous abundance in his mouth. It seems uncomfortable and this seems to be causing his pain.

In the middle of the night last night he began running a fever. His antibiotics were switched to something broader to cover any infections that may be causing this reaction. We were told to expect a fever, but had skated by without one up to now.

Since we're not allowed to come home with Henry after this round of chemotherapy, arrangements have been made for us to stay at the St. Casimir House, another Believe in Tomorrow residence. Instead of telling Henry that we cannot come home, we're telling him that we get to go on vacation to this house, his images of which are likely those of their House by the Sea, a retreat house we recently stayed at in Ocean City. After we told him of this, he's now generally more fixed on going there than home, so it's been a good strategy.

Yesterday Henry also received a blood transfusion which boosted his red blood counts up significantly and will hopefully improve his energy level. It looks like he'll probably receive platelets today as his counts there are below 20, the threshold for transfusion. I expect today to be another day spent hanging out in bed, just trying to keep him comfortable.

Sisters are the best medicine

I'm so proud of our boy.

Things are going much better than any of us expected. There are still several days in front of us where he is at risk for fevers, mouth sores, nausea, etc, but so far he has tolerated this chemo so well. It amazes me how much abuse his little body can take, and keep on moving and lovin' life!!

Bryan was on duty last night, and overheard Henry flirting with his nurse when she got him to eat part of a poptart. We figure we're getting 3-400 calories a day into him, which of course is not enough. We'll be talking to the rounding team tomorrow about resuming TPN, or IV nutrition. He did great on it last time he needed it, and hopefully he won't be on it for too long. Fortunately, he's still eating some, which helps his gut to stay as healthy as possible and will hopefully curtail some of the refeeding issues that young children get sometimes when they haven't eaten for a long time due to medical illness.

The girls and Henry's Grandma Linda and I came down in the late morning. Henry and Bryan met us at the front door of the hospital on Henry's motorcycle (a really cool trike). Amazingly, he has the energy to ride all over the hospital after barely getting out of bed for a week and having about half of the red blood count that he should. You can't keep a good man down! Currently, he gets "unhooked" from his IV two hours a day, and he really looks forward to it. He handles everything so well, I think I forget how abnormal it is to be hooked to an IV pole through a line in your chest. He only shows how it affects him when it comes off. He's liberated in every sense of the word.

We went back up to his room for a visit. He and Sophie immediately started playing, and within minutes they were running around the room screaming and jumping as a remote control Tow-mater chased them. It was so good to see them laughing together.

Henry and Bryan took apart the toy chain saw that hasn't responded to new batteries, found a loose wire, and fixed it up. Henry then cut off various limbs of his family members, and finally decided to use the chainsaw to give some My Little Ponies a hair cut. All boy.



The kids eventually settled down and bit, and Anna got in some snuggle time. It's a little hard for him after his sisters go home, but he really had a ball. We hope to get them down some next weekend too, maybe for a little longer. He had trouble eating today, but did end the evening with some ice cream that he really enjoyed. I told him that if he wanted some again for breakfast I'd get it for him. His eyes got very big and he said "That would be cool!"



Rocky Road, anyone?

Perked Up

What a difference 24 hours can make. I came down early to relive Tara's double shift and found Henry pleasant and ready for the day. He was out of bed much of the time today. He rode the bike out in the hallway and accompanied me to do laundry and down to get my lunch. We are allowed this freedom as he was unhooked at our request for a brief period of time today. As long as he's bathed and changed before we adventure out (and refrain from touching things) we can go where we please for now, despite our 'isolation'.

His major disappointment for today was not being able to go into the playroom. He cried very sadly for a time. I was able to distract him and he accepted it for now. I'm sure that will not be the end of it. We daily bring him some of the presents that we've been given for him. It's a good source of distraction and he's come to look forward to it. One of the toys he particularly enjoyed today was a game of Memory. The full version of the game I think would have been a little overwhelming so we played with them all turned face up. He enjoyed finding the matches. We played for about an hour - he was very attentive.

He had some down time in the afternoon and then engaged his nurse with some play about his workbench. She indulged him very enthusiastically. He enjoyed it and I appreciated the break. Aside from being a little tired and not eating much, he was very close to acting quite normally today. A big relief from what was expected.

He's winding down now in front of 'Bob the Builder' and will be asleep soon.

Day Zero

Sleet, snow, and freezing rain seemed a inauspicious way to start an important day for Henry. Today is considered Day Zero, or the day he gets his stem cells, that were harvested from him 3 months ago, put back into his body. Bryan and the girls will be spending the day at home while Henry and I experience this next step in the journey.

We both had a pretty good night. His fluids have been able to be cut back to “maintenance”, or the amount of fluids you need in a day. During chemo therapy he gets “twice maintenance” to help flush the chemo through his kidneys. We love the kidney flushing part, but not so much the peeing every 45 minutes all night part. We’re glad to be done with chemo.


On Wednesday of this week, Henry and I, for entertainment purposes, had our own private “Crazy Sock Day” that impressed our rounding team. I let them know ahead of time that today was going to be “Crazy Hat Day”, and they joined in the fun! Thanks to all the doctors and nurses here who go out of their ways to make Henry and the other children laugh a little. Unfortunately, Henry had a mild case of the grumpies this morning, and pulled his doggie hat over his face the whole time they were in here. Since they left, though, he’s enjoyed talking about them and looking at the picture we snapped.

We’ve gotten mixed signals on the transplant. On the one hand, everyone tells us that it’s just like hanging another bag of medication, which runs in uneventfully. On the other hand, everyone we see is saying things like “Today’s the big day!”. In addition, the nurse brought in a little baggie containing meds for cardiac arrest resuscitation and equipment for ventilation, and told me that he’ll be on a cardiac monitor for an hour before and after the transplant. I’m certain that it’s all a big better-safe-than-sorry routine, but I can’t say it doesn’t make me a little nervous.

---

Day Zero, part 2

Well, the runup to the tranplant was truly more exciting than the transplant. It took about an hour of premedication and preparation to get him ready, then the 10 mL of his own stem cells ran in over about ten minutes. They've monitored his vitals frequently over the last few hours, but everything has gone great.

The stem cells are stored in a preservative called DMSO, which has a very distinctive smell. The DMSO gets excreted through the lungs, so he emits a very strange odor on his breath. That should go on for a couple of days. I was mostly concerned about it bothering him, but he doesn't seem to notice it. I don't find it offensive (some people do) but I'm not planning on suggesting an air freshener line with it.

The stem cells circulate in his blood for a few days before settling in his marrow, where they'll take root and begin producing white blood cells to replenish his immune system. So now we wait for that to happen over the next two weeks. He'll be staying in the hospital for safety until his body is ready to take over on it's own.

Isolation

After a bit of a restless night, Henry didn't awake until after 8am this morning. He ate several packages of crackers yesterday evening and wanted juice as well. I took all of this as a good sign as usually he won't tolerate anything in or near his mouth if he feels any nausea.

He woke happily and has spent all day in bed. We help him go to the bathroom in a urinal to which he's become accustomed. When asked if he wants to play on the floor, he’ll reply that maybe he’d like to later. He mostly lies quietly and watches television.

Our nurse came in the late morning and told us of some disappointing news. They had done a stool culture and found something called VRE. Henry has bacteria in his gut that are resistant to a particular antibiotic, Vancomyacin. In and of itself this is not really anything to be concerned about and Henry is on an array of antibiotics and anti fungal medicines that should keep him doing well. To prevent passing it on to others however, he must now be put in ‘isolation’. There are special contact precautions that all the health care workers must take now when entering the room, they must all don gloves and gowns in addition to their masks. Henry cannot go into the hallway without being bathed and his clothes changed. He is no longer allowed in the playroom, which is the biggest downside for him. Apparently this condition takes a while to resolve, particularly while resident in the hospital. His precautions will not be lifted until he can have three consecutive negative stool cultures – to be taken a week apart from each other. This purports, therefore, to affect him for the duration of our stay in and near the hospital.

---

Note: Due to internet inaccessibility I wasn't able to put yesterday's post up until now - read about Henry's B-I-N-G-O game

B-I-N-G-O

Today Henry played bingo. Once a week on the televisions in the hospital, the Child Life team broadcasts a game of hospital bingo. The bingo boards are laminated and include things like masks, IV poles, and urinals as the objects to cover. The highlights of the broadcast are the review of the prizes that the kids can win and the fact that they say the names of the children on TV.

Henry decided that each gift was more attractive than the next until he spotted one of those pull-along Thomas the Tank Engine trains. His eyes lit up and he said, "I want that choo choo crain". Three games are played, each with 8 to 10 winners. Sometime during the first game, a child about Henry's age won and picked that train. Henry was very upset. It took me a while to remind of him of some of the other gifts with the hope that we could pull off a win. There was consolation, the prize cart comes around for all participants after the games are over, so no one really gets left out, but try explaining that to Henry.

The gift he had his eye on now was a toy phone. The way to claim your prize in the game is to call the game host and read off your bingo. Each time, she would say something like 'pass the phone' and Henry thought it was his newly chosen prize being taken again. I had to explain over and over that it wasn't 'his' phone they were talking about.

In the end, we had four out of five in a row, four different ways on that bingo card. There were only two winners left to be awarded. They called 'G - Bottle' and that did it for us. Henry got his phone. He was very proud of his prize and showed all the nurses that came in and promised to call them on it.

In the end I think this was a better gift for him anyhow, as he's really not himself, staying in bed all day. We watched movies the rest of the day. Tonight is our last chemotherapy for this admission. No more daily EKG’s, no more midnight baths. Tomorrow we would rest and recover a bit in preparation for our first stem cell transplant.

A nice day

Tara here again with a status update. Henry had a nice day. He played in the playroom for a while this morning, but by noon was in bed and didn't make it out again. He enjoyed his visitors and the toys they brought (thanks, Granya and Miss Susan!). He seems very comfortable, and in good spirits, but very tired.

He ate 3 cookies for lunch but after that didn't drink or eat anything more. Over the last few days he hasn't eaten much but we've been able to get some calories into him with liquids. I took his refusal of liquids as a bad sign, and was not surprised when he complained of nausea tonight. He never actually vomited, but we added a second anti-nausea drug and he settled down for the night. Hopefully he'll sleep well.

We've been told to expect a fever sometime next week. His temp is normal now, but the special implanted mommy thermometer in my cheek tells me that we'll be seeing a fever sooner than that. We've also been warned that next week will be the week that he feels the worst, so we'll continue to take one day at a time and hope that he feels as good tomorrow as he did today.

I don't write as often (or as well) as Bryan but I wanted to take a moment to thank all of you for the support that you've been giving us, the girls, and Henry.

Introspection

Henry is still doing well, although tired today. He's been lethargic this afternoon, atypically wanting to stay in bed with only token rides around the floor. He tires quickly and seems moments from dropping off to sleep at all times. He is such a good boy. After all, this is his life and his struggle. He's being forged into such a champion each day.

Somehow, perhaps for the better, the time leading up to this round of chemotherapy kept me blissfully ignorant of what was to come. I fell very easily into the rhythm of our new home life and had put behind me the first phase of chemotherapy as difficult but over. Since October, I've spent the entire time beginning to absorb what Henry's diagnosis meant to some facets of Henry's life, our lives, and those of his sisters. This reflection was tossed among the daily rituals that have become normalized in our new view of reality. I felt like I'd come to a calm acceptance of day to day living within our new situation and withheld looking too far into the future for fear of becoming too attached to a positive outcome or too overwhelmed by a negative one.

The several days immediately preceding Henry's most recent admission, began to weigh heavier and heavier upon me, a sense of dread mounting with each out patient visit to have him tested for his current functions so we could recognize what the chemotherapy had done to him. At some point during this time, I began to see the chemotherapy, not as medicine, but poison. We were planning to poison my son, because nothing else had any chance of preserving his life. The effects of this poison were to leave him, and those around him for that matter, scarred for life. Hopefully these scars would be minimal - small crosses to bear, the likes of which affect some at random anyhow - infertility or hearing loss for example. This knowledge and the pause before commencing the treatment, left me to stew on the possible outcomes, no longer able to preserve my shelter of ignorance.

For the first time since Henry's diagnosis, I found myself angry at this situation. It wasn't a 'why us' kind of anger, but a frustrated, having-been-backed-into-a-corner kind of anger. There was nothing to do but accept it. Nothing could make me feel better about it. No pleasure to be taken that would alleviate it. With full knowledge of it's effects, we would administer this poison to our son, hoping that it killed it's target before it ravaged him. I withdrew into myself, not really understanding my feelings well enough to talk about them to anyone.

Several days passed while I attempted to work this out in my head. I exercised, meditated, ate better food, tried to relax; all attempts to calm myself about it. Nothing helped. Nothing would change what was about to happen. It wasn't until I had my first turn in the hospital with him, seeing him doing well - laughing, playing and entertaining - that I was able to better accept our path. I woke up to a new level of realization and with it, a new wave of grief.

Momentarily lifting my head out of my anxiety for our future, I found the effects of Henry's diagnosis rippling out to so many people, some very close and some at a distance. I realized that I've not been as attentive to those immediately around me - my daughters, what is this doing to them? I picture their sweet faces looking up at me with a sad, innocent and inquiring look, eyes welled with tears. I look at my wife and imagine us on our wedding day, never guessing what could lie ahead, wishing to avoid things like this. I see our parents being supportive but looking behind their eyes - I see their empathy for us and their own plight of having a grandchild with cancer, wanting so desperately to help or fix things and not being able to; our relatives, watching and being supportive where possible, going about their normal days only to be reminded suddenly of what's going on at odd moments throughout the day; circles of friends feeling helpless but offering such wonderful support despite it all; parents of our children's friends trying to give answers to their kids - knowing that no kid should have to worry about such things; barely beginning to appreciate the years and years of treatments those families we see in the clinic have endured and are to yet endure; watching kids during chemotherapy and seeing them colorful and playful one minute and ashen and sickly the next.

There are days I feel completely inadequate to handle what's been handed us. Other days I feel capable, but wary because I know it's simply a function of time before that changes. In lieu of describing this whirlwind of emotions, my answers are brief and guarded when others ask how we're doing. I'm not sure I could describe it anyway, my emotions change at such blinding speed. When people marvel at how we're 'doing it all', I have to think, 'if you only knew'.

Yes, there are opportunities for growth in all of this. Adversity does that. But it's difficult to take solace in that. It's a difficult pill to swallow that one's growth is coming at such an expense. But what are we to do? In the face of such a crisis, we pick ourselves up, arming ourselves with the comfort and support of family and friends and make the effort to take one step, one day, one moment at a time.