Day 100

This weekend Henry passed an important milestone: 100 days out from his second transplant.

Transplants cause such significant immune compromise due to suppression of the bone marrow and immune system that even though Henry's numbers look pretty good, he's still considered at risk. For the last 100 days we've needed to take the following precautions with him:

• wear a mask near any groups of people (especially indoors)


• not be around any sick people


• wear a mask near any active construction sites


• no consumption of fresh fruits or vegetables, with the exception of those things that can be washed and peeled


• no handling of plant products, or playing in the dirt or mulch


• no fresh cut flowers in the house


• no eating from any communal sources (ie bag of chips)
  

Day 100 is a big milestone. He's now allowed to be around people, and generally doesn't need his mask anymore. As soon as his radiation is through, we can expand his diet to include all the watermelon and blueberries that he wants. And he can touch things that up till now we've all shouted "No, germs!" about.

We celebrated by hitting the grocery store, where he was tickled to be able to eat his cookie IN the store instead of waiting until we got into the car. We spent all weekend teasing him with "Quick, Henry, put on your mask!" so that he could gleefully remind us "But I don't need it anymore!"

He's still not back up to full strength; that's still three months (and several vaccinations) away. We've been warned that he should be kept away from anyone with an illness, as he's still susceptible. Any fever demands an immediate trip to the ER (but not necessarily an admission to the hospital). While he's now allowed to play with buddies his age, he's not quite ready for preschool due to the huge volume of germs there, so that will have to wait a few more months.

We head back down to Baltimore to start our last week of radiation in the morning. We're so close we can taste it. Tonight, he picked a big bouquet of daisies for his Grandma's birthday, and we didn't have to tell him not to!

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.

What You Gonna Dream About?

The last few days in the hospital, while certainly not anything that could be measured as 'normal', have been rather uneventful. This is a very desirable characteristic of a hospital visit of any kind, but it makes for long days. Henry is doing very well right now in terms of the side effects of his chemotherapy. He has surprised the doctors with how active he has been. In fact yesterday after receiving both blood and platelets, it was like he had the energy of several three year olds! His stamina took him around the floor several times on the bike, then on foot. This from a child whose last chemotherapy regimen left him weak and in need of practice to walk again once out. We're so pleased right now.

One of the quirky things that Henry takes to in his less active and fatigued times is resorting to an arsenal of questions and idiosyncrasies that are in no uncertain ways like water torture. Here are a couple of examples.

• The need to let the sheath on the temperature gauge fall completely to the bed before retrieving it.


• He must hang up all telephones at all times.


• He must be the one to operate the room remote. This includes the light, the TV, the volume and the nurse call button.


• Requiring us to 'help me hide' before we leave the room so when we return he can 'surprise' us. Every time.


• My personal favorite...The need to hold up a special stop sign to indicate when he stops peeing in the urinal.

Yesterday a quacking duck had to accompany each diaper change. Each of these things must happen. If not the offender will be summarily punished with an outburst of spectacular proportions. Occasionally the offender is not made aware of the requirements before a new rule is introduced as the other day when I helped him blow his nose. Now this is something that we've done for him forever. Somehow I did not perform this ritual exactly as expected and he went nuclear.

Now of course we understand that these are his ways of exerting control over an otherwise awful situation. He's practically locked in a 15 x 20 room for almost the entire day over the course of three weeks. He is prodded every 4 hours for vital signs. He's made to take nasty tasting medicines, awakened with stomach cramps and while he may feel like eating, his body isn't always on board with the idea.

Of course he also asks at nighttime, "What are you gonna dream about?" and we have a short discussion about the sweet things that he's going to dream about. His dreams usually involve his daily visitors, his sisters, his grandmothers and occasionally about his toys. Last night when I returned the question, he replied "I'm going to dream about Gramma comin' to visit me."

One of these days....

"One of these days Henry is going to realize that he just had a stem cell transplant."

Spoken by our transplant doctor, as Henry came tearing around the corner on his mogocycle. (I was well behind him, yelling "Don't crash! You don't have enough platelets to crash!")

Bryan and I are thrilled at how well Henry is doing. We still have several days left until his stem cells emerge as white cells in his blood system, so we're far from out of the woods from this round of chemo. However, at this point last month he was very very sick, and we expected the same this time around. His temperature is inching up, and his antibiotic coverage was broadened last night. He is complaining of some abdominal pain intermittently, and having frequent watery stools, but this is just a whisper of how sick he was last month.

Thanks so much to the many many people who are continuing to remember Henry. We've had gifts and visitors and phone calls, and they all make him smile.

What a Contrast!

Yesterday was yet another active and playful day for Henry and today is shaping up to be the same. Tara reminded me this morning that at this time during the last cycle, Henry had the beginnings of his rash and the coughing that preceeded his mucousitis, and was on morphine for pain. Every good day now feels like we've dodged a bullet. We're crossing our fingers for the time being, but I'm not sure we can hope for too much more for too much longer!

Play Day

A quick post today.

Henry's had a great day. He's had some great play time, both with his sisters and his favorite babysitter in the world who came down to visit some today. He's got some new decor for the walls, courtesy of the Butterflies, Ladybugs, and Zoo Crew from The Learning Center (thanks, guys!).

We suspect the chemo will be catching up with him soon (his white count was almost zero today, and surely will be tomorrow) but it's been great to have such a nice day!

All the Way to the Moon and Back

Following the same pattern as his last high dose round, Henry burst into his more normal self after being unhooked yesterday. His new medicines seemed to rectify his high blood pressure and some stability enabled the monitoring equipment to be removed and Henry roamed free for most of the day.

My mother volunteered for an overnight and as Henry has not yet had any symptoms of mucositis, which really makes nights hard, we opted to take her up on it. The mantra for overnight was 'teamwork' as Henry needed to 'coach' Grandma Linda through the overnight vitals.

My mom retold the most precious anecdote from the overnight:

Henry: I love you all the way to the moon and back.

Grandma Linda: I love you all the way to the moon and back twice.

Henry (pausing thoughtfully): I love you all the way to...Casimir!

Grandma Linda: I love you all the way to Kansas!

Henry (with mouth open, eyebrows up and hand on face): Oh!!

Arghh Matey!

Today was an eventful day. Henry received his second stem cell transplant. This is the second treatment of this sort which is intended to give his immune system a much needed boost in light of it's destruction from the high doses of chemotherapy agents.

Henry had some high blood pressure and a low heart rate immediately prior to his transplant which caused a bit of concern and delay in administering his stem cells. There are several possibilities for this, most likely of which is simply a reaction to some of his medications. They are treating it now by removing the suspected drug and additionally supplementing with platelets in the less likely case of some sort of internal bleeding. This causes some increased anxiety for Tara and I and we're hoping that this resolves itself quickly.

On top of all that excitement, and in an effort to keep the endlessly long days at the hospital amusing and distracting for all involved, Tara and I came up with the idea of themed days. After today's success of our first theme day, Pirate Day, we may yet attempt more. We may have to ask the nurses, doctors, and child life specialists if they can take it before we attempt another as today they all had to don eye patches, talk like pirates, assist with a treasure hunt and most importantly sword fight with Henry. While on the surface this was a game, it really warms our hearts to know that the team here bends over backwards to help these kids any way they can and they have our eternal gratitude.

Now, after repeating his mantra of "I'm really not tired." over the course of the last hour and a half while yawning voraciously, Henry has fallen asleep. Tonight will involve the above mentioned platelets being administered as well as some more attentive monitoring to ensure his stability. Because the combined Pirate Day (fun) and Transplant Day (a bit stressful) kept us so busy today, we're hoping for smoother sailing tomorrow.

NO MORE CHEMO!!!

Today, with very little fanfare, Henry finished his last dose of chemotherapy, hopefully forever!

We're so proud of our little man.

Do you hear that?

The carboplatin that Henry has gotten is a chemotherapy medicine that works particularly well for medulloblastoma. It can cause hearing damage in some people, and it is the presumed cause for Henry's current mild hearing loss, which doesn't affect normal spoken conversation. Because of it's effectiveness, our doctors advised using it even though we know that he will lose hearing enough to affect him in his daily life. How much it will affect his hearing is unknown, and it can continue to worsen up to a year after exposure, so this will likely be a moving target.

We asked how soon we would notice a change, and learned that it is close to immediate. The first sign of loss is ringing in the ears, and as that fades, the hearing loss replaces it.

On Sunday evening I was lying in bed with Henry and he put his hand over his ear, then took it away, then replaced it.

"I can hear my hand."

"Really? What does it sound like?"

So he put his hand over my ear, so that I could hear.

"Do you hear that?"

"No, honey, I don't hear it. What does it sound like to you?"

He sat up deliberately, grabbed my head between his hands, and placed his ear directly over mine. "Now do you hear it?"

"Yes, honey, I hear it." He was satisfied.


Since then, he hasn't mentioned it again. Bryan and I have been testing him here and there, whispering to see if he's missing things. So far, so good.

We've been told we can have him tested while he's still here in the hospital. He'll likely need a hearing aid. The last time we saw the audiologist, she suggested that we not rush into one, but instead talk louder and diminish white noise until he's used to it. This made me feel better - I was feeling like we had to get things done right away. I think it makes more sense to let us all adjust first.

One more day of chemotherapy remains. His second stem-cell transplant is scheduled for Thursday. After that, we wait for the healthy cells to return. We've been told that the symptoms of immune suppression are likely to be worse this time around, so there's clearly anxiety around that. We'll just take it one day at a time.

Jekyl and Hyde

I like Sundays at the hospital. As I walked into the building today, it was quiet - there was no security officer directing cabs and traffic with his whistle from afar, the flow of people in and out of the hospital slows to a crawl and the lines in the cafeteria are small enough that I don't feel like I'm abandoning Henry whenever I run to get a meal.

Today with Henry was easier too. I'm sure he'd finally had a decent night's rest, but moreover he, along with his parents, had begun to adjust to hospital life again and the inevitability of the duration of our visit.

We played with his trains on the floor, made a brief attempt at some crafts, watched what's become his new favorite DVD's - Max and Ruby - several times over and while he had to be coaxed into it, I did get him out of bed for a ride around the floor in his push car. Not much for physical exercise, but it's good for him to be out of that room for a while. Good for us both.

He fell asleep easily tonight after taking his medications like a champ. Ten minutes after he drifted off, the night nurse walked in with a scale to weigh him and do his vital signs. "Can we do this a little later?" I asked.

An hour passed and because he has so much fluid clearing his chemotherapy now, his diaper cannot hold his urine unless he's changed frequently. This is really upsetting to him and disrupts everyone's night. Changing him at 9 and changing him at midnight, yielded completely different episodes.

At 9, he thrashed and screamed and kicked while I did a simple diaper change. I had to hold him down to get his temperature and blood pressure, which of course gives a terrible reading to boot. At midnight, just a few minutes ago, he woke gently and allowed me to change him. I patted him for a while, he asked for a story and quietly complained that my rubbing his back was tickling him - he said this with a little giggle.

It's difficult to keep in the front of mind, but he reminded me tonight that we're all dealing with this as best we can. He's still his sweet little self, just very frustrated and mad sometimes. His acting out over the last few days is his bad mood over something that could cause any reasonable person to act irrational. We're all starting to adjust again, but, like everything, it just takes time.

Back in the Saddle

So we're back, at Hotel Hopkins.

Henry had a good night last night. He didn't object a lot to coming to the hospital - we had prepped him over several days. However, he's shown his displeasure since we got here. Since Bryan and I are feeling the same way about things, it's understandable.

Henry was pretty mad about being "hooked up". Having the IV pole attached really limits his physical mobility, but even more so locks down his mood. He feels very trapped by it. Again, so do we. He requires almost constant tending, since he can't move around on his own. For this round of chemo, he'll be hooked up the entire first week, essentially till he starts feeling sick from his counts dropping. He's had some major tantrums, about minor things. Over and over, his frustation at the situation comes out. He seems to be settling in as the day goes by.

A bonus this month - no thiotepa, therefore no 3 AM baths.

Bryan and I approach this month with some fatigue - emotional and physical. We both seem to be fighting a virus, and can't sleep enough. In addition, last month's efforts really were taxing, and we don't feel at 100% to start this one. Slow and steady is the strategy for now. The thought that this should be the last round is of course liberating. Focusing on that thought will doubtless help us all through some long days.

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.