Hair Fairy

When the kids lose their teeth the tooth fairy comes, but who comes when your kid loses his hair? Well, before round 2, we decided to summon the Hair Fairy. Henry awoke to a new book and two dollars, which was mostly for something to put in his new Lightning McQueen wallet. The book was 'Clifford's Day with Dad'. Seemed fitting that we're headed to the Aquarium for a day together. That Hair Fairy sure is something.

Calm Before the Storm

Today was a gift. I'm starting to feel like that more and more. Today, though, despite being a little worn down from yesterday, we all relaxed more than we have in a long time. We had more visitors today, some from out of town with words of consolation, others from close by with company, distraction and food. A fire burned in the fireplace while we allowed the kids a few early Christmas gifts as we're not sure what the official holiday will bring. I've become fond of candles over the last year and lit several around the living room. There was a warm glow over the entire day.

Tomorrow I'm taking Henry to Baltimore. We're going early to visit the National Aquarium. The girls visited recently and enjoyed it. I figured it was the least we could do for Henry before subjecting him to round two of chemotherapy. He's looking forward to seeing all the sharks, stingrays, and dolphins. We visit the clinic sometime before 5pm to have them type his blood for Tuesday's surgery and stem cell harvest. Then we're off to spend the night in the Children's House again. What a wonderful resource that has become for us.

So tonight we take stock of our blessings and steel ourselves for the next round. It helps a bit knowing that we can hope to expect some good days after the bad, but it doesn't really soften the blow of what's to come. Here we go again...

Hooked

True to his current trajectory, Henry had his best day at the hospital yet yesterday. The most difficult part was getting his weight. It was the first thing that had us do and he was just not going to take his coat off. After that though, he played in the playroom they have at the Oncology clinic while he received his dose of G-CSF. We've given this to him before, but it was only over the course of 20 minutes. Now they believe that a longer exposure over 2 hours will have greater efficacy. So we sat and watched Dora and he pretended to talk on the phone to Mommy and his sisters. Altogether a very easy, gentle day for all involved. In fact, something I never thought would happen, Henry waved and smiled at the Oncologist and nurse today. He continues to surprise us with his adaptation to the extremes of his situation.

This morning the home nurse came to instruct us on how to administer the G-CSF at home. Its clear why the home nursing is an industry. The room stays are by far, the majority of the cost when we see the itemizations from the hospital and insurance company. Despite the thousands of dollars of equipment they lend us and the nursing visits, it is clearly more cost effective - not to mention more comfortable and humane. Henry calls this time "being 'hooked'", like 'hooked' to his 'tubes'. He seems to prefer sitting when he's hooked, but today he was more mobile. We put his medicine pump in a dog backpack that was given him recently to hide it and make it more portable. We only hide it to keep him from having to remember what's going on. He doesn't really seem bothered by it all that much. He played on the floor for a while with a toy bus and a play kitchen mixer; he walks to the bathroom with some help and also aided Mommy in wrapping presents.

I'm not sure if its easier or harder awaiting chemotherapy this time. To a large degree we know what to expect. Repeating what we've done isn't pleasant to consider, but I suppose its slightly better than not knowing. Looming large is the end of this cycle at which we will have an MRI of Henry's brain and spine to see how receptive the cancer has been to the therapy thus far. There are obviously gradients of the answer to be found from that test. The prognosis can change significantly based on that outcome.

Later today, Tara is going for lunch with the women in her family - a long-standing tradition. I will take the girls late this afternoon to a soccer game in, of all places, Baltimore. This should constitute some enjoyable time to spend relaxing with them and some friends for both Tara and I today.

Nice Day for a Walk

There are a lot of reasons I write in this blog. One of them is to remember. This morning, Henry looked up at me and said, "I thought it would be nice to take a walk. I can drive Cruckie and you can walk." Its cold, but sunny and we will be going on a walk before our drive in to Baltimore today.

Anticipation

Today we exhaled and began mentally preparing ourselves for the next stint of chemotherapy. It was a generally relaxing day composed of our now typical activities - a few errands, a Cruckie ride or two (or more), playing with some neighbor friends and some nice time with visitors. Henry was in a pretty good mood today with one exceptional outburst while outside riding Cruckie. I'm still not sure what set him off, but he cried with his head down for what seemed like many minutes. He wouldn't let me approach him and I, of course, didn't feel right walking away. I sat on his truck's hood and waited it out.

I hoped that I was assigning more to his emotions than was plausible, but I imagined some of the same thoughts as I was having, going through his little head. A nondescript feeling of dread, of the feeling that while this was all well and good, it was becoming more difficult to enjoy the closer our re-submersion into the throes of chemotherapy came. It was over as quick as it came and he was happily driving down the street, a blessedly short memory.

Henry loves trucks. He likes the mail truck, the garbage truck, backhoes, bulldozers, tractors of all shapes and sizes, firetrucks, monster trucks and UPS trucks, which he now calls the 'present truck'. Today a package came for Tara and me. I halfway expected this to be a problem for him, but he instead insisted on smashing the little popcorn packaging material in it. True to three-year-old form this 'popcorn' kept him busy at least as long as any toy he's received. Just like at Christmas, the wrapping paper is more entertaining than the gift itself...

Tomorrow we're back at Hopkins for a checkup. They'll draw his blood to make sure his system is where it needs to be for stem cell harvesting and re-entry for chemotherapy. I'm hoping this will be a relatively short visit. I'll have to make use of the time to inquire about some insurance discrepancies, additional supplies that we require and some general questions about what's to come. Over the next four days, we'll administer double doses of G-CSF, the stem cell stimulating drug that will send his cells into overproduction for harvesting. These cells will be saved for the high-dose phase of chemotherapy. Monday evening we'll be at the Children's House again as we expect an early time for a surgery in which he'll have an additional line put in for the express purpose of the stem cell harvesting. He'll be sedated all day in the Pediatric Intensive Care Unit. The line should then be removed at the end of the day and then I suspect we'll be moved to the Oncology Floor. We're grateful for at least having the weekend to be at home as a family again before beginning Cycle 2.

Boys Will Be Boys

Yesterday Tara started work again. This was my first day entirely alone with Henry. Since Henry's immune system is recovering very well now and he's feeling better, he's able to be outside more and play with friends. One of the neighborhood boys came down and Henry and he played with Cruckie. My girls never did anything like this...

Today Henry woke up a little grumpy but turned around quickly. After his sisters left for school, he watched his morning regimen of 'Franklin', 'Oswald', and 'Dora the Explorer'. Then we finger painted for a while.

While the paper was a popular choice, so were our noses.

We took off about 10am for McDonald's for a hashbrown - filled with fatty calories, just the prescription for gaining back some pounds. Unfortunately Daddy is also putting on some sympathy weight...those things are so good. We went over to Border's to get a few more books for some hospital reading. It's no big surprise, but his current favorites mimic some of the TV shows he watches - 'Clifford' and 'Max & Ruby'. We'd seen the mail truck passing us on the way out for errands and he was eager to get back to drive Cruckie up to the mailbox for retrieval. He pulled up close - a little too close, actually. Sorry about the plants Mommy...

He loads up the back of Cruckie with mail and then tears off around our circle while I 'chase' him. He cackles the entire time. He'll round on me and try to run over me and still, he just laughs like its the funniest thing in the world. I warmed up a bowl of soup and sat outside and watched him awhile. He'll go round and around in circles that would make any adult dizzy.

Another marker of his interim recovery right now is that he asked for a snack that was an old favorite - gummy snacks, peanuts and raisins. This used to be all he'd eat, and in fact became synonymous with the word 'snack', but we haven't heard a request for it for months. So he rode around with his snack in Cruckie for about 10 more minutes and then pulled into his regular parking space in the street which, by the way, he pulls into with a precision unmatched by most mature drivers I know. He sat with a frown on his face and I approached him. "What's wrong buddy?" I asked. "My tummy hurts," came the response. So we came inside. This phrase has come to mean so many things. It's rarely hunger. It was born of nausea and constipation, but now seems to indicate that he recalls his central line and that, I'm sure, begets further thoughts of the hospital and his stay there.

He's now having a bit of well-earned relaxation in front of the television and then we'll be off for a nap that he likely won't take. I've got some running around to do and Granya has stopped by to give me a little time to get out. A welcome respite, but one filled with a bit of anxiety as we've both - Henry and me - become accustomed to being around one another all the time.

Christmas Preparation

Yesterday we decided that we should get the house ready for the holiday season. Usually this entails dressing in our snow gear and boots and heading out to a tree farm. This year, since we cannot have any plant material in the house during Henry's neutropenic times, we headed to Target instead. We walked away with a 7 1/2 foot fake tree which had to be de-coned for us to use. Within a few hours we had our house looking like Christmas.

We had guests from Granya's church come in the afternoon to keep us company. In the evening Tara's sister and her family joined us for dinner and visiting. Henry enjoyed playing with his cousin Charley. It was a happy normal day.

After everyone left for the night, it was Henry's bedtime. We prepared his nutrition and read books. Perhaps because of the evening's activities or a late nap, he did not fall so quickly to sleep as previous nights. He likes company as he falls asleep now and we're happy to oblige, but this night, I fell asleep first. I awoke and he was out. I stumbled downstairs for a bit of TV before bed.

I had a hard time falling asleep when it came time for bed. The busyness and ease of the day had its repercussions in the quiet of those moments before sleep. Our situation becomes easier to ignore during a hectic day, but its weight bears down heavily in the stillness at night.

I need so
To stay in your arms, see you smile, hold you close
And It weighs on me
As heavy as stone and a bone chilling cold...
I was just wondering if you'd come along
Tell me you will
-Dave Matthews Band

Amplitudes

Tara and I went to bed about 10:30p last evening after starting Henry's TPN (internal nutrient feeding) and woke up about 7:30a. That was the first time since two weeks pre-diagnosis that we've slept uninterrupted all night. This was to be a harbinger of the day to come. Henry was happy and pleasant and seemingly pain-free for almost the entire day. He ate cheetos for breakfast, pretzels and cookies for snack and several small servings of mac and cheese over the course of the day. We cautiously went shopping for some more comfortable clothes for the hospital and when we got home, he played on the floor with his trucks and cars. Best of all - he laughed. He laughed and he giggled and joked around.



Bath time and medicine time are still very difficult. These times seem to remind him that all is not normal. Medicine that he took easily before this last stint in the hospital is now a four-handed operation - and sometime two legs. Fortunately, we have only one medicine to give twice a day - and only through tomorrow. Bath time tonight was especially tough. It seems that whenever he is reminded of the tubes in his chest he says 'my belly hurts'. To me this is clearly his form of denial. We had to put a special water tight bandage on over his central line to keep it from getting wet. It didn't really work that well and to boot it created another crying spell.

We prepared his TPN for tonight and put him to bed. Reviewing the day in my head, I realized that the normal day allowed me to forget about Henry's cancer for a time. I too had my own forms of denial. When presented with his fighting and rejection I reacted poorly. I was angered by his spitting his medicines and fighting bath. Couldn't we have just one normal day? Of course its not his fault. I felt awfully for becoming angry. I'm glad Tara was there as I was able to vent far from Henry.

I feel in a way that we must allow these oscillations of emotion for ourselves and to lean on each other for breaks. This just caught me off guard today. I don't want to waste my time with him being upset or angry.

Here's to you, Mastercard

1/2 gallon whole milk: $1.79
Organic bran flakes with raisins: $4.29
1 bag Cheetos: $2.89
1 can mandarin oranges: $1.29
1/2 gallon pulp-free Orange juice: $3.29
1 pound flour: $0.99

Watching Henry eat 4 bites of pancakes, 15 cheetos, 2 bites of raisin bran with milk, 5 mandarin orange slices, and 8 oz of orange juice in a 24 hour period:

Priceless.

Restful Day

Henry rested well last night. Since he's been home he's complained only a bit about his belly - we're not sure if he's hungry or hurting. Nothing sounds good to him to eat although he's sampled several things which we take as a good sign; a few bites of pancake, oranges, and an icy pop.

Tara's mother is here today cooking up a Thanksgiving dinner with all the fixin's. She's seeing to it that we don't go without turkey this year. We had a fire in the fireplace and did puzzles, a craft and of course, bundled up and rode 'Cruckie'.

Its a strange sensation being home now, nerve wracking in a way. In the hospital, there are all the resources you could possibly need. He gets most of his medicines intravenously there. At home, we're at the mercy of the medicine delivery and the home nurse, which are running late today. We have access to all the hospital phone numbers and such, but after the fever episode, it is unsettling being at home alone.

We've been so busy running back and forth and trying to keep him comfortable that today, with three adults and only Henry here, I'm a feeling some nervous energy. I hesitate getting into anything for fear of not paying close enough attention to Henry.

These fears are, I tell myself, normal. As the day draws on I feel myself relaxing a bit more. Which apparently we'll have time to do more of soon, as well as a bit of time to catch up on some household details gone unattended. The oncologist told us today that we won't have to be back at the hospital or the clinic until Friday next week. That's the longest time at home we'll have had since the day of Henry's diagnosis. I think they're still 'treating' us, understanding that recovery, both mental and physical, for all involved is necessary.

Our next step will be for Henry to have another central line put in for the singular purpose of harvesting his stem cells. He'll take four days of high-dose G-CSF in order to spur his cell growth. Then he'll be put under for duration of the actual procedure, approximately 8 hours long. Following this we expect to be admitted for our second round of chemotherapy. We're trying to catch our breath while we can.

Thanksgiving blessings

The best Thanksgiving news of all: we're being discharged today! We will likely not make it home till evening, and we plan on a full turkey dinner tomorrow.

We will (hopefully) be home for a week before returning for chemo round 2.

Our love and thanks to all of you, our friends and family, for the love, messages, support, and prayers that are being sent to our family.

Enjoy your turkey, eat your pumpkin pie, and hug your family. Have a happy Thanksgiving!!

Paparazzi

One of Henry's newly discovered distractions is my camera. He's very interested in all things mechanical. Often when we're driving the car, he'll ask detailed questions about 'what button' we're pushing or how we make the car slow down. So the camera was no different. We've already had to charge the battery once and as we speak I'm downloading approximately 200 pictures of his taking. He specifically tried to get pictures of the TV, the wall, the ceiling and the IV pole. He also had his stint trying to photograph people, Tara and I were his main targets, but the nurse didn't escape either. I was the subject of one series which, when looked at continuously on the camera screen, appeared as a poor quality movie they were so quickly taken. My son the paparazzi.

First some pictures of Henry:



Here are a few of his selections:

His Favorite Blankie from Grandma.	Mommy and Daddy
Nurse Courtney	Self Portrait

Priceless

Its morning and there's no sign of any poop yet. He rested well enough. There was a bit of puffiness along the lower portion of his head incision I noticed last evening. The floor resident was uncertain of the cause, so she had the neurosurgeon team notified. I was impressed with their response. One of them came down within an hour. Dr. Jallo, the surgeon who performed the operation came in the morning after his reconnaissance team visited. The consensus is that it is an 'inflammatory response', a result of his resurgent white blood cells, which, by the way, are shooting through the roof now. Our last reading was 1280. They're confirming the reading from this morning now, but the preliminary read was 4000. Gotta love the immune system. This trajectory is apparently due to one of his daily medicines, G-CSF, which stimulates their growth.

We're facing another unexpected issue now. His constipation is keeping us in the hospital beyond when they'd normally send us home. His fever has broken, hopefully for good this cycle. His counts are returning in force, which is a requisite for, you guessed it, second round of chemotherapy and back in the hospital. Hopefully we'll get a day at home, but they also need to harvest some of his stem cells for what is called a autologous stem cell transplant. They will take his stem cells that generate marrow and give them back to him during his high-dose chemotherapy - cycles four through six. I believe this is an outpatient procedure but is anticipated before our second cycle of chemotherapy. We don't have a very big window in which to accomplish it though.

The nurse was doing his repeat blood draw this morning to confirm his counts and he asked for a musical snow globe his grandmother brought in. This is one of those things that before I used to look at and wonder how long before he'd get bored of it and then I could 'retire' it. When I see him play with it now, I see it completely differently. I see his eyes light up and his brain trying to figure out what's going on to make it work and just the smile it brings to his face. I don't really care if that lasts 10 seconds, 10 days or 10 weeks. If it brings a smile now, its priceless.

Waiting for Poop

Over last 72 hours our focus has been two things. First, Henry's ability to fight the infection he currently has. His fever seems to have subsided, corresponding with the increasing trajectory of his white blood cell count, now at 1280 per cubic millimeter. The 'normal' range is between 6,000 and 17,000. This is the most encouraging news we've had since this visit began. We will continue to monitor these numbers throughout his chemotherapy.

Our focus now is on his Vincristine-induced constipation. A couple of days of constipation is bad enough. Henry hasn't gone for almost 2 weeks. Now that his fever has come down they're willing to try more aggressive measures. To date he's only been taking things from 'above'. I'm writing this during the 6 hour intermission between enema #1 and #2. Each enema requires 3 nurses and myself to hold him down. Afterwards Henry was completely exhausted from struggling, straining and screaming. He rested well for a bit, but we're still waiting for the dam to break, so to speak. If #2 doesn't accomplish its goal, we will continue with more drastic measures tomorrow - manual disimpaction. I'm hoping for a productive night.

Reminders

It's 4:30am. Henry's been up and down all night with stomach pain. He's been irrationally insisting on a wagon ride for the last 10 minutes. The nurse came in to draw some blood. I decided I needed a break - and some food. I sat down on the couch in the parents lounge while I waited for some leftovers to reheat. 'This is the most uncomfortable couch I have ever sat on', I think.

We're surrounded here by reminders of just how serious this whole business is. Monitors, nurses, medicines - these become routine. But when you see a child on a wheelchair going to the elevator for a test or kids playing in the playroom with their masks on, or the black and white pictures of hairless children on the walls, or the buzzing in the halls that indicates a child's oxygen isn't what it should be, or wondering how many kids have been in the same bed that yours is, the screams of the kids getting treatments like NG tubes or spinal taps or some other torture - all of these things remind you of the seriousness of childhood cancer.

I glance up to a sign next to the uncomfortable couch.

Furniture donated
in Memory of
Vincent
and All of the Beautiful
Brave Children Who Have
Fought the Fight

Superman

Superman has nothing on my son. He's been hit with so many drugs, chemicals and medicines I can barely keep up with them all. He's had test after test after test and he's been laying in a hospital bed for weeks. Yesterday he lost his hair. Today he had a tube put down his nose, he didn't like it, but he tolerated it. He listened when I warned him it would hurt and did it anyway. We went for CT scan later and he lay there still and waited while 3 people picked at tubes in his chest. The sound of the machine startled me, but he lay there and took it like a man.

I've never been more proud of my son. He's my new superhero.

And So It Goes

I woke up to a pounding headache this morning. I can't decide if its general stress, caffeine withdrawal or from the habit of grinding my teeth at night. I took some Excedrin and tried to fall back asleep but it was futile. The lights seemed too bright at 5:30am so I lit some candles and turned on a hot shower.

I'm having a harder time dealing with Henry's cancer lately. The effect of his therapy on his appetite has been to effectively eliminate it. I'm used to taking pride in the healthful way our children look; full boned, with that lean childhood muscle. Now Henry's knees are bulging in the middle of thin, flaccid legs. He's noticeably lighter now when I lift him and seems frail. When things are going on inside of him, I have to strain to imagine what's going on. That can have its own pitfalls, but they're fleeting. Now that the chemotherapy has taken his hair and his appetite, its more evident all the time. And this is the beginning...

We've been getting the itemization of bills from the hospital. I suppose they send them so that you appreciate the insurance company. It's certainly having that effect. My heart starts racing with each envelope that comes. I've heard of the stories of fighting with the insurance companies about coverage during a time like this, something I dread. So far, no sign of it. In fact, each time I'm on the phone with our provider, they consistently end the conversation with words of empathy. I hope that extends to any differences we may have in the future.

My mother returns home today for a short time and will return in early December. She's been our primary source of support during these last weeks. I think she'd rather stay, but I'm glad for her to return for a while to rejoin family there and to put things back in order after her abrupt departure in mid-October. Thank you Mom.

We're all off to Baltimore early today. We'll leave the girls with Tara's folks, spend some time with Henry at the hospital and then get over to the airport. I'll swap with Tara and we'll start the week again. We're crossing our fingers to be home by Thanksgiving, but we're not counting on it.

Kind Hearts

Tara arrived early to take over for me at the hospital. We spent a half hour or so reviewing his care, our thoughts and some plans over the next couple of days. My mother returns to Kansas tomorrow for a couple of weeks, so I'll be driving her to Baltimore on our way to swap again tomorrow.

Before I left the hospital today, I leaned down to give Henry a hug. I felt the warmth of his feverish neck on my nose and his little arms reach up near my shoulders. I kissed his neck and felt the layer of fallen hair all around him. It felt so good to have him hug me. He took one hand down and reached for his beeble (his binky) and kissed me. What a sweet boy.

I drove to a soccer tournament for Anna directly from the hospital. I didn't arrive in time to see even a part of their last game. I was, however, the beneficiary of an amazing act of generosity and support from the team, parents, and my extended soccer family. Just as we didn't ask for Henry's cancer and feel helpless regarding its outcome, the generosity of friends, family and coworkers has been equally overwhelming and we're in awe of the outpouring of kindness from everyone around us.

Someday, its my sincere intention to explain to Henry, what kind of love and the extent of support that was provided him and his family by those around him. I can only hope that it will help him become as caring for others as those around him have been to us. As it is, I expect that these times will leave a lasting impression on our girls and give to them a generous and caring heart for other's as well.

Tara called me late in the day and told me that Henry was finally tired of little hair falling all about and they'd pulled the remaining bits out. She says he has a fine 'fuzz' over his head. I heard her over the phone saying she liked his 'new haircut' and its just like daddy's. I'm proud of him for handling that so well. They went on an elevator ride and took a wheelchair to an x-ray today to check out his belly and his chest. Its good for him to get out and about.

Everyone's off to bed now as I write this. We're hoping that his constipation issues resolve soon as its preventing him from taking some of his medicines and causing a lot of anxiety about nutrition. As for now, we're just going to try for a good night's rest and cross our fingers for tomorrow.

Wholesome Medicine

Henry slept from about 11am today until around 5pm. This is the longest period of restfulness since this whole ordeal began. He rested quietly and when he did wake up, he was in a fine mood. We talked and took another wagon ride. He asked for food - he hasn't eaten it yet, but its a start. His constipation issue seems to be 'moving along' (for lack of a better phrase).

Henry's had all kinds of medicine today. Zosyn, Amikacin, Bactrim, Tylenol, Miralax, Senna, Nystatin, Ativan and something called Larry's Solution. He's begun getting intravenous nutrition or Total Parenteral Nutrition (TPN) because he won't eat. He had his platelet transfusion early today too. For all the stuff they've given him, the thing that made him feel better was good old fashioned sleep.

Sometime after his nap, he said, "I like it when you hold me." He spent a little time on my lap. We laughed a little. I put him back in bed. We read books and he fell asleep while I read to him. His peacefulness tonight was the best medicine for me.

New Baseline

He rested quietly again this morning after a decent night's sleep. Henry's carried a fever of well over 100 F for most of the night. Before he fell asleep last night, he had an episode of increasingly irrational behavior - random phrases he'd repeat over and over, sometimes angrily. "Who's going to cut the rope?" "Who will catch my poopies?" "I don't want to cut my lips" This lasted for close to an hour. He couldn't be talked to or consoled. In fact the more I tried the worse it seemed.

I got quite anxious and pressed for the resident to speak with our oncologist. In the end, the attending from the floor below came up and reviewed the resident's assessment and assured me that it was likely due to the fever, but they'd monitor it closely. They gave him Ativan and within minutes he calmed down. His temperature returned to close to normal and he slept. He'd wake every couple of hours and twist and turn, groaning, "I want to go on a wagon ride".

Overnight he continued to receive tylenol and antibiotics (Zosyn & Amikacin). His platelet count had dropped sufficiently to require a transfusion (Platelets = 22, normal 150 - 350 K/cu mm), this following his blood transfusion from yesterday (RBC 2.33, normal 3.9 - 5.3 M/cu mm). Thankfully, he had no reaction to the platelet transfusion, which apparently manifests quite quickly via specific abdominal sounds. His counts are not yet showing signs of turning around, but I think that they should be soon. We are still awaiting his Vincristine administration, held over from day 15 (yesterday).

This morning we finally went on the long awaited wagon ride. It was short-lived, as expected. He's uncomfortable sitting up yet. The desire is good though. We went once around the floor, pointing out the different parts of the beach scenes painted on all the walls. We returned to the nurse changing his bed sheets. They're beginning to be covered with his hair that has now begun to fall out. I'll run my hand through his hair and its as if he's shedding. This promises to be anxiety provoking for him. As much as we've talked about it, he's fearful of anything different right now, not to mention he hates hair in his mouth, which seems inevitable.

I try to think of him without hair. Like anything along this journey, I can't quite seem to imagine how it will seem to the full effect that reality is sure to bring. We're prepared with stocking caps and the like for him (and me, as I've shaved my head for solidarity). Every new bump we encounter makes this more and more real all the time. When I'm home things seem relatively normal, when I'm at the hospital they seem, well, different. My idea of normal is starting to adjust, the home version and hospital version are merging into a new idea of what normal is for us now.