Monday, March 31, 2008

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.

Saturday, March 29, 2008

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.

Thursday, March 27, 2008

The Final Push

Things are going well at the Scheck Household. After being allowed to come home unexpectedly, we quickly got into step with a relatively normal family rhythm. It's become tempting to think of life in another 4 to 5 weeks when this next round of chemotherapy will be over. Life will have its own challenges then, presuming a normal life while knowing that there may be years of holding our breath and waiting, but we'll have our Henry still.

There are still a few hurdles to clear before that time. One more round of high dose chemotherapy with some dangerous side effects. Up to this point, Henry has come through with flying colors and we'll hope for the same. While it's an unpleasant process, his rebound this time has been ever so encouraging. During this next round of chemotherapy, which starts tomorrow, we do know to expect some degree of hearing loss, and we've been told he'll need a hearing aid. We'll also begin discussing the need for Henry to have radiation. This will be the most difficult decision we'll have to make regarding his therapy. Up until now, there has been general consensus on his course of therapy. Things are less clear regarding risks and benefits of radiation. We plan to solicit multiple expert opinions before deciding.

I can't overlook another bit of good news we got recently. On Tuesday, Henry had a spinal tap, the results of which were negative, meaning no cancer cells were present. Though not 100%, this result means it is less likely that the residual abnormality on the MRI is active tumor.

So we're back to Baltimore starting tomorrow. Henry knows it, but doesn't like it. Come to think of it, that's kind of how we feel too.

Monday, March 24, 2008

A Special Tribute

On Saturday night, Tara's folks and some family friends went to a 'Shaving' for the St. Baldrick's organization. If you've missed what this organization does, it raises funds for childhood cancer by having some very special people volunteer to have their locks sheared. This 'shaving' ceremony was held in Baltimore and while we intended to go ourselves, we were lucky enough to be at home with Henry instead. Jane took some pictures to tell the story...

We want to extend a warm thank you to those participating in this St. Baldrick's event, signing the card and especially to those shaving their heads to help find a cure for childhood cancers.


The Real Winner! Thank you all!
(I couldn't get him to stop running!!)

Saturday, March 22, 2008

Happy Easter

It's Easter weekend and we're all at home. We've eked out an extra night from our doctors so we won't have to return until Monday sometime.

The oncologist called with the results of Henry's tests. His CT of his sinuses looks better than the last one indicating an improvement due to the medicines he's been taking for his sinusitis. His chest x-ray was clean and the placement of his catheter is fine. His MRI remained unchanged. There remain some abnormalities which our doctor said he would like to be able to tell us were gone at this point. They may indicate inflammation due to chemotherapy but we must treat them as if they are cancer cells. No one at this point can tell us what they are - there is just not enough information to tell. We've become comfortable with some uncertainty, but this MRI, although we expected to be the same, took us a little aback with the vagueness of it's results. The upshot is that basically the doctors hoped that the 'abnormalities' would have cleared up by now. We're slowly coming to realize that this is just going to be a waiting game for a long time to come.

Recently we received back our photos from the Flashes of Hope photography session we participated in back in early February. We're pleased to have them back and at how they turned out.


Henry and Daddy


Hanging Out


The Henry Scowl


Looking Ornery


Our Sweet Boy


Little Man


Standing Proud


Just Us


Sparkle in His Eye


We hope that you all have a blessed and happy Easter.

Friday, March 21, 2008

All Is Well

A quick post at the end of a day of tests. We've had some worried callers due to a lack of posting recently. Rest assured, it's only because our limited internet access at our temporary residence.

Henry had a CT scan of his sinuses, a chest x-ray and an MRI today. They all ran really late and it made for a long day of not eating for him. We expect to hear the results tomorrow. These are routine tests and we hope to hear similar results as the last battery considering the recent chemotherapy has been of a stronger sort.

Thank you for your continued calls, care packages and notes of encouragement. We'll update more thoroughly soon.

Monday, March 17, 2008

Chik - a - lay

Mealtime has been stressful for Henry lately. He sees the rest of us sitting down to eat, and knows that he's supposed to want to eat, but he really doesn't. He generally is able to come up with something that sounds good, for which we will go to the end of the earth to procure. He looks at it with great enthusiasm, but the second it hits his tongue, he spits it out. Taste buds take quite a beating from chemo, so nothing tastes quite right. The worst part about it is the look of betrayal on his face when he doesn't taste what he expected to taste - like someone secretly poisoned the pancakes we just rushed to make.

So far, he's been drinking about 6 ounces of juice per day, sips of milk (heavily fortified with half and half to boost the calories), a few bites of vanilla ice cream, and Nerds (a very tart candy). This morning he branched out to orange TicTacs. (Great, the one and a half calorie breath mint.)

Bryan brought home some ice cream cones from the grocery store today, to satisfy another craving Henry's had. We expected him to to take an obligatory bite and be done with it. To our surprise, he ate all of the ice cream and most of the cone. He even asked for a second one, but by the time it was ready, he was no longer interested. Still, it was the most that he'd eaten yet!

This evening we had some errands to run, and Henry requested Chik-a-lay (Chik-Fil-A to those of you who need translation.) This is his favorite fast food, and a regular stopping point during our commutes to Baltimore. He asked for his usual, and took a very big first bite. I expected it to come right back out, but instead he grinned and gave me a thumb's up sign and kept right on chewing. He finished almost a full serving. For dessert tonight he had another ice cream cone.

It's great to see him eat. He gets all the nutrition he needs through his TPN, but it's troubling as a parent to see a child not eat. For now we'll keep him on it, but if his appetite continues to pick up, we may cut it in half. We know he'll stop eating again during the next chemo, but we hope he'll be able to enjoy one of life's greatest pleasure for a few days first.

Saturday, March 15, 2008

Visiting

Today was a visiting day. We visited with our neighbors, we visited with Tara's folks, we visited with some folks in the park we went to while the kids played and made new friends. Mom and Tara visited Little Italy and brought back some terrific food. Many, many people visited the area we're in now in search of fun St. Patrick's Day festivities. Festivities which I expect will go on well into the night.

While I could detail much of our day of relaxing walks and conversation, I was delighted when Sophie wrote down some of her day. I thought I'd let her words do the talking tonight.

"This hows (house) is a naus (nice) hows my bruthr has cansr we haft to stay at this hows We haf los of tous (toys) he likes to play with tham. I play with him my sister Anna plays with him to. he staus (stays) in the hostpile (hospital)."
accompanied by a picture of Henry's hospital bed



"I have a friend namd Sophie. my nam is Sophie to. We went to the parck it was fun than we wnt back hom. Then I rod on my sckodr (skooter) it was fun to. Then I had happy howr. Then I did a posol (puzzle) I did three ckarectrs then I wocht tv then I rot this store(story)."
The End.
- By Sophie Scheck

Thursday, March 13, 2008

A Peaceful Day

We've had a quiet day here at St. Casimir with our family. We've brought the girls down to enjoy a long weekend together. We took a walk, hit the grocery store and played out in the courtyard of the house for a while. The kids are winding down for the evening watching a movie while Grandma and Mommy are getting some rest and relaxation at a local yarn shop as knitting has become the pastime of choice.

Henry was very sweet the latter part of the day. He gets so frustrated sometimes and it makes it hard on all of us. I feel especially bad for him during these times because it seems so clear that he just doesn't know how to handle his emotions and the facts of his situation. Alternatively, late in the day, he sat on my lap and let me tickle him, ending in giggles, not anger. We cuddled on the couch until dinner, watching television and teasing each other. It was really wonderful. He had much more to drink today than in days past and ate just a little bit of ice cream. Good signs that his appetite is improving.

Tomorrow we'll have another clinic appointment, hopefully routine. Yesterday at clinic, Tara wisely requested a different (better tasting) medicine for Henry which went over much better tonight than in evenings past. So now, I'll prepare his TPN and coax him to bed and we'll all quietly exhale after a peaceful day.

Wednesday, March 12, 2008

The Plan

Last night, as Henry fought fatigue and bedtime he said, "Mommy, I have a plan."

It takes little kids to remind you of all the things that you say that you don't really realize that you say. Apparently, I talk about 'the plan' a lot.

"How about we go lay down for 2 minutes, and then we'll get up and watch TV again?"

It was a good plan, but I had a better one, which involved sleeping uninterrupted for 12 hours. Unfortunately, neither came to fruition.

Once Henry let go of that plan, he tried again. "Mommy, I have another plan. How 'bout in the morning time, we'll go to the grocery store and get everything that we need to make chex mix, and then we'll come home and make chex mix?"

Now that one I could go for.

Somehow the days pass quickly, though we get very little done. Today we hit the grocery store, and had an afternoon clinic appointment. Henry's numbers are holding steady. We again got the list of do's and don'ts for him after the transplant. For now, we go to clinic at least three days a week. He'll have a bunch of testing next week, including another MRI, hearing test, and echocardiogram.

But first there's some chex mix to make.

Tuesday, March 11, 2008

Henry Daylight Savings Time

It's 8pm and Henry's still going strong. He slept OK last night, but didn't get to sleep until around 11pm. His body clock is about 2 or 3 hours behind normal. None of us got up until about 8:30 this morning so we're just assuming we'll have a later schedule than usual.

Everyone knows that Henry loves his wheels. Cruckie (which by the way, may soon be renamed, Thruckie - he's very proud of himself for getting his T's better) as well as the oncology floor car and mogocycle. St. Casimir didn't have anything to compare, so this morning we presented Henry with his very own Mogocycle, complete with turn signals and many fun sounds.



He had a good time assembling it as well as driving around a small park near St. Casimir. The signs of spring, warmer days and buds on the trees, have been encouraging to the soul.

Monday, March 10, 2008

24 Days

We've been sprung! We were released from Hopkins after a 24 day stay sometime around 1pm today. It kind of felt like we were moving out as there was so much stuff to migrate to the car. We all got to St. Casimir's in good shape and after a quick tour, we each took naps, uninterrupted by doctors, nurses and beeping pumps.

Henry and I walked to the grocery store nearby for a few supplies. We then headed over to the Children's House to pick up a couple of packages there for us with some surprises for Henry and the girls. We grabbed some dinner at a local Thai restaurant for Tara and I. Henry's dinner arrived earlier - internal nutrition via pump (TPN). He'll have to be hooked up overnight for him to get the 12 hour infusion of nutrients. He did express an interest in eating but decided to 'save it for later' each time. This is a pattern that we remember from other chemotherapy cycles. Henry has two or three medicines to keep him infection free that we'll have to administer and we'll have to make trips to the outpatient clinic every few days.

Henry is excited to have some freedom to roam and tomorrow we expect to tour the nearby neighborhood allowing him to enjoy some time outside. We're close to the water and boats, which I'm sure he'll enjoy seeing. I expect that we'll have the girls down soon, as Henry has complained that "I really can't wait to see Anna and Sophie". So while we appreciate the folks at the hospital that take care of us, we will really enjoy not seeing them for a few days.

Sunday, March 9, 2008

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. video

Friday, March 7, 2008

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.

Thursday, March 6, 2008

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.

Wednesday, March 5, 2008

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!"

Tuesday, March 4, 2008

De-intensification

Henry continues to improve steadily, in every area except his insanely itchy rash. We had the dermatology team come by yesterday to offer their opinion. They seem to think that it's related to one of his medicines. Since he's been on over a dozen since he's been here, it's really anyone's guess. The bottom line is that it doesn't appear dangerous, and we'll be putting a steroid cream on it for the next several days. It's still driving him nuts. Fortunately, it doesn't keep him awake, but during his waking hours we are constantly applying some sort of soothing lotion.

He still has some pain, especially related to his mouth and throat. I saw a small amount of blood in his mucous once yesterday when he coughed, but overall his mucositis is already just a shadow of it's former self. It humors me in some way that now when he gets a small string of drool on his cheek he flips out, where just a few days ago he was lying in a pool of it without noticing or caring. It is truly remarkable how quickly those symptoms have improved.

Our goals now are to de-intensify his regimen, to move to hospital discharge. We need to remove his antibiotics one by one to make sure he doesn't resume a fever. We need to gradually turn down his morphine drip while making sure that his pain is controlled. We need to work toward getting him more physically active, out of bed a little bit, but I think that will be the easy one. The spirit is willing, the body will follow when you're three. This will all take several days, but we're hoping to be out sometime around the weekend.

We also found that Henry was very demanding yesterday, and very grouchy. There were a lot of tears, a lot of tantrums, and even hitting, which he never does. He had ups and downs, and we were able to spend some time playing games and talking pleasantly. It's sad to see him so angry, and I wonder what is going on in that little head. Is it anger at what we've done to him, or just the grumpies from one of his meds? We'll never know. I do know that if one of my children acted this way on a normal day at home, I'd be ready to sell them to the gypsies. Yesterday I took great pleasure in watching him use those muscles to kick, his voice to scream, his arms to throw things. Just two days ago I couldn't have dreamed of him having the strength to do any of it.

Monday, March 3, 2008

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.

Sunday, March 2, 2008

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.

Saturday, March 1, 2008

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.