Remembering at Christmas

It's been a bit of a struggle lately to come up with ways to remember Henry at Christmas.  It's the same problem we have in our daily thoughts of him, just that the holidays set a sense of timing about it all.  We want to think of him, but the thoughts inevitably hover on what isn't instead of what is.  I'd love to think that we could control that impulse - to continually be grateful and happy for the time we had with him without feeling a sense of lacking without him.

It sounds ridiculous, I know, but somehow I wish it were possible.  Like remembering when your children were younger, recalling how they used to throw food on the floor at dinner or how they used to say certain words in their particular way.  You remember, smile and place that little sticky note memory on the current version of your child and can be happy about the times you've experienced together.  I guess I don't really know what the comparison is, but there's just not a happy place to put those sticky notes for Henry.  We do smile when we think of him, but there is no future with which to be content in additional experiences.  It's an incredibly difficult balance to find.  Perhaps impossible...

Anyway, this year we've opted to spend Christmas in an unconventional way, doing something different than our normal traditions would entail.    It's worked for us to varying degrees at Halloween and Thanksgiving, so we're going to give it a try this December too.  However we still want to include him.  We've mustered the energy to decorate a bit.  We've put his stocking up over the fireplace.  At Thanksgiving, one of the mothers at the bereavement group we go to at Hopkins mentioned she lit candles and kept them burning all day in memory of children she's known who've died.  We adopted that at Thanksgiving as well and expect to do the same at Christmas.  It was comforting.

I wanted something a bit more for Christmas though.  I wanted to feel his presence a bit more tangibly.  I bought a small Christmas tree and we've decorated it with his ornaments and some of the small projects he painted.  It's turned out to be a really nice tribute.

So I guess we're finding ways of coping, strategies for managing grief, which I suppose is all we're able to do.  It's not going away, it's not going to magically one day be 'OK'.  We're not going to suddenly only have happy memories.  It's just not the reality of it all.  But I guess we'll be able to find ways to cope.

Keeping Vigil

The last few days have been peaks and valleys of emotion. Henry has been sleeping most of the time, waking for an hour or two at a time, sometimes three or four. When he first wakes he's generally alert and responsive, can converse and is comfortable. We keep him on pain medication to avoid headaches which are the hallmark of the tumor's progression. As he tires, his requests turn to demands and he begins a manic litany of needs which get more and more frequent and unreasonable. This exhausts all of us, especially as sometimes his waking moments are at night.

During these wakeful moments we recall better times with photos and conversation. He still watches some television but his interest in that has waned recently. He does hum, sing or tap to the jingles for his shows, which brings a smile to our faces and makes me strangely content. He is drinking well and still enjoys some of the foods he always has; orange chips, chocolate, mandarin oranges. We spend our time attentive to him, waking or asleep, and to the girls, keeping them occupied and feeling loved.

It is not clear how much time we have with him. I read an account of survival at sea recently. According to the author, rescue must be viewed as an "interruption to the survival journey" meaning that to look for the end is to lose focus on what is required now. For now we will float, focus on Henry and await interruption.

Giving and Gratefulness

Henry continues to give and we continue to be grateful.

Yesterday he gave us the opportunity to spend all day surrounded by caring and loving family and friends, gathered in our living room around the fire. He had pain, agitation and discomfort for parts of his day, but with medication he rested, slept and had several hours of calm alertness during which he conversed and entertained. We cried, we laughed and were grateful.

After a blessedly full nights' rest, Henry awoke with complaints of a minor headache. We administered his morphine twice before it finally subsided. He wet his small bed we've moved into the living room and while changing the sheets, he sat with me. He has never been an overly affectionate child. He prefers to sit alone, preferring proximity to touch - but this morning he sat with me quietly. I have longed for this and he obliged me.

I have chosen the mantra of gratefulness of late, focusing on the things we have to be thankful for in the midst of this ... thing. I try to be careful about calling it something ugly or bad. There has been no intention in any of it, sad - yes, evil - no.

Anna had a tough time this morning. Sophie wouldn't go in to school without her either. We've kept the girls home for a time to allow them to normalize themselves again in hopes of sufficiently collecting themselves to do what will help them most of all - routine.

Henry lays sleeping calmly, his small chest heaving rhythmically while the background of Clifford dins in the background. It's a quiet and pain free moment and we're grateful.

Blessed Holiday Season

The confluence of several things these last two weeks have kept the Scheck family here on the ropes. We had a rough cold sweep through the house leaving only Anna untouched. Sophie and Tara had the worst of it and fortunately Henry's immune system fought it off pretty well. It did have us sleepless for some time. Sophie's birthday is actually today, we had her party this past Sunday with all her friends at The Little Gym, who, I have to say, throw a wonderfully complete and worry-free party. Our big girl is now seven and as bouncy as ever. We just returned this evening from a dinner out at a local hibachi grill - a favorite entertainment spot. The usual Christmas mayhem has kept us hopping too - gifts, planning, crafts, cards - all wonderful traditions that have kept us busy and thinking wintry thoughts.

In the few hours left recently that haven't been consumed by the above, have been spent in recovery trying to keep up with an immensely energetic Henry. He looks great, feels great and is literally running around the house. He has resumed his weekly Little Gym class which he enjoys so much that he completely loses himself in it, screaming, running and throwing his hands in the air. It is my absolute favorite time of the week with him. It's so readily apparent that he is just being a kid. And while he still doesn't have the balance of a normal 4 year old, he runs and jumps and crawls on everything in sight as well as joining in with their group activities.

All of this December has been wildly distracting and, aside from our colds, very upbeat. Even the visits from the hospice staff have become a highly anticipated event as they, as much as Henry, have enjoyed playing and building rapport with him during this amazing time. Tara and I often comment to each other that we've simply never seen him look so happy and healthy. It's really a tremendous irony and one we're extremely grateful for. Not infrequently do I think about the wonders of modern medicine and feel unable to fathom what it has afforded us as a family, not to mention some of the best time of Henry's life.

So this weekend, we will venture out, weather permitting, to cut a real Christmas tree, in contrast to last year. We couldn't have live plants in the house due to Henry's weakened immune system and had to forgo one of our favorite traditions. We will trim the tree, hopefully just in time for Grandma Linda's arrival for a pre-Christmas week of visiting. In the meantime, we'll continue to ride the goodwill of the season and relax with each other, knowing it is a true blessing.

Happy Thanksgiving

Over the last few days my brother's family from Kansas was visiting. Tara and I were so very happy that they made the effort to come out. Our kids particularly enjoyed their cousins, as they provide such fun playmates. Together they create such wonderful memories for all of us. Their departure this morning left us to a home town Thanksgiving, after which we'll settle into what we hope will be a long stretch of routine.

Henry was very relaxed and happy during their stay. He's feeling so much better. The treatment for his swelling after leaving the hospital recently was simply fluid restriction, but steadily over the last week he has lost the weight that came on so quickly. He's not been allowed to drink more than 16 ounces of fluid daily but has been urinating far more. It's strange to watch. At his heaviest he weighed a little over 60 pounds. He's now down to just below 48. He's looking so much more normal, no longer drawing stares from people when we're out. The puffiness around his eyes has diminished significantly with the help of a wedge we placed under the head of his mattress to keep gravity working for him instead of against.

At the same time, we've been slowly reducing his steroids, his appetite has been steady. Tara and I have the distinct feeling - and we don't mind - that he's really enjoying eating again. That's a pleasure we're just not about to deny him.

Henry cannot begin his next round of chemotherapy until his platelets begin recovering. We chose this situation to make our first use of Hospice services. Perhaps I'm being unreasonable, but sitting holding Henry, listening to him scream, while an unfamiliar nurse digs for a viable vein in his hand, is just not something I can handle very well. I guess I'm of the mind that his short life should have as little discomfort as possible. So I gave them 60 seconds and then politely asked them to pull it out, realizing that now tomorrow we'll make the trek to Baltimore to have a 45 second procedure. The nurses there are so artful, expert and complete with the way they handle these delicate situations with the kids. It will be familiar, it will be routine and it will take most of the day. But I'd rather keep him comfortable.

Recently I've seemed to notice a maturity and calm about Henry. He's very trusting of Tara and I. He no longer fusses much at inconvenience or changes of plan. He's grown to enjoy coloring, painting, and games that before he wouldn't touch. He seems laid back and happy, laughing far more than either Tara or I can remember. This combination is at once, immensely comforting and fulfilling and devastating. We're beginning to see him grow into his next phase of life, a confident, curious, interesting, talented and smart little boy. After years of babying, tantrums, little sleep - then chemotherapy, procedures, radiation and the hospital - we're able to develop a more mature relationship with him. He's polite and articulate. He's a pure pleasure to be around.

Sometimes things you say as a parent come back to get you. I'm fond of reminding my children that it's important to be grateful for what they have, instead of worrying about what they don't. This Thanksgiving, I'm content and grateful that we're all here to enjoy one another.

Day by Day

Henry had a truly wonderful day. We kept the girls home from school today to spend the last full day with their visiting Grandparents. We caught an early movie - Bolt - then went to lunch. We talked Henry into trying Boston Market in lieu of his 5th visit to Chick-fil-a this week. He's now convinced that Boston Market has 'the best chicken!'

We were visited by the third round of Hospice staff today. The amount of assistance available is wonderful. It's surreal, though, watching him laugh and play on the floor while discussing things with Hospice services.

Fortunately our current needs from the services offered don't demand much. We count ourselves ever so fortunate that Henry is feeling great. He continues to drop pounds and looks better each day. He is really in the best mood lately, finding everything gut-busting funny and laughing like he can't control himself. It's the absolute best sound in the world. He and the girls sat and played Mario Cart this afternoon for hours. Being good sisters, they let him win each time (well, almost every time...) and finally he stood up, chucked the steering wheel across the floor, threw up his hands and yelled "Yeah Me!", mimicking Anna's phony narcissism, "I won every time!" He joked and played and teased all evening, chuckling the entire time. When it came time for bed, it was clear he was tired, but had enjoyed the day so much he didn't want it to end either.

It was really a magical afternoon and evening. It was cold, but we had a fire, candles, wine, good music and family all about, and again, the laughter was golden.

One Day at a Time

After fiddling with doses of medications for several days and finishing with his chemotherapy, a pattern seems to be emerging to Henry's mood. He sleeps pretty well overnight and has a solid nap in the afternoon. He's happy in the morning and his anxiety level has dropped a bit, allowing us to give him fewer medicines to ease his tension. Since his chemotherapy has finished, we're only administering an increased dose of steroids and some anti-nausea medication as needed.

His appetite has improved significantly, extending to chicken nuggets (Chick-fil-a, of course) and pancakes. This along with sleep is a good cycle for him to be in at present bringing a bit more energy and mood regularity. He can be engaged with play for a few hours a day, but after a while it seems a heavy effort for him. He can be comfortable most of the time either watching TV or listening to stories. He's quick to let us know when he's ready for bed.

Over this past weekend we had a visit from my mother and brother from Kansas. It was wonderful to have their presence in the house as we spent some wonderful time together. Henry enjoyed seeing them both and quickly rekindled his relationship with his Grandmother who's spent so much time here caring for our family.

Tomorrow we venture back to Baltimore for a follow up clinic appointment to check his status before our trip. At the beginning of the week, we were highly uncertain of the value of the trip for him with his state of being, but are very encouraged by the recent change. It lifts his mood and our spirits. So we're planning to go on our trip still and are hoping to create some long lasting memories of quality family time.

Tara and I want to thank each of you who've offered any form of support to us right now. Our energies are consumed by keeping our family on course and that energy comes from the love we feel from our friends and family.

Life is Fragile

We returned home late last evening after Henry's MRI at Hopkins. We got all the kids down and the phone rang with the call that would confirm our worst fears. The cancer which Henry has fought over the past year has begun to return over his brain.

We've known the odds since last October, only one in four make it out of this. Henry's response to the treatment and his recovery afterward has been astounding, leaving us hopeful. But aggressive cancers get aggressive treatments, meaning that not much, if anything, has been left on the table to try. We meet with our oncologist tomorrow to discuss what our options are. Whatever they are, we know we want Henry to be as comfortable and happy as possible.

For those of you who interact with our children, please speak gently. Tara and I will be discussing this with them today. Their actions and words will need to be listened to with great understanding. We ask that you provide them that.

As for Henry, he is feeling good right now. We have many questions which we hope to have answered tomorrow. For now, we begin to take one step at a time down a path which we hoped to avoid. Not having that option now, we will be deliberate and focused on each day, each step.

One Year

Yesterday marked one year from Henry's diagnosis. Like many earth shattering events, I remember practically every detail. Some of which I hadn't thought about for some time. Henry's stumbling on the soccer field, unable to stand; heading to the hospital emergency room, thinking the chances of something really serious were small; the absolute terror and disorientation when the doctor told us of the tumor.

Tara and I felt the need to recall the day, to mark it somehow. But it came and went with nothing but a whimper. Perhaps it's too early, too soon after the event. Since we've come home from the hospital and treatment, each day, for a while, was like a weight lifted from our shoulders. Maybe before, our anxiety was eclipsed by the sheer busyness and stress of what we were managing our family through. Now the anxiety seems like a very slow-healing wound. You can dismiss it for a time to get through what you have to, but if you happen to bump it, you relive the pain intensified by memories.

The day before yesterday my nephew was taken to the emergency room, then to Children's Hospital in DC for an infection. Things are going better for him and he may be released soon. This was too close to home at such a time. The thought of the little guy in a hospital bed, IV in his arm, nurses, interruptions, tests. It's just not something you want to see a child have to endure. While I'm sure the last couple of days have seemed an eternity for them, I'm relieved it's been short.

Many of you have remembered us on this one year. We've learned so much over it's course, but one of the most impressed lessons upon us has been one of humility. We're so touched to be remembered, thought of, considered and cared for. We are still standing and realize that it's not been without help. So again, we thank you.

Quiet Milestone

Last week, on October 1st, Henry passed the six month threshold since his second stem cell transplant. Just days prior to that we had his tubes removed and as of that 180 day mark, he could return to school.

Henry's much older now than when he left his school, just about a year ago. His need to be around other children to play is very evident most of the day as he just wants a playmate. "Daddy, you pretend that..." "Daddy, you have to be this truck and I'll be that one." "Daddy, when will Anna and Sophie be home?"

So last Thursday he began preschool again. Just a couple days a week for now. He has so many adjustments to make, after all. Socially he must learn to be with kids again, he needs to learn to sift through the noise that typically accompanies groups of children, and his immune system has to relearn how to fight many of the common bugs that are out there.

As a result, he's been sick recently, runny nose, coughing at night, and, yes, vomiting. This last one is enough to drive parents of a child with a brain tumor to drink. The throwing up, shaking and crying are all too reminiscent of events that we'd really rather forget. We're coming up on his next MRI soon - in November. I think you could probably graph with high accuracy our moods during the ensuing months. Immediately after MRI results, feeling good. That stays steady for about two or three weeks, then the doubt starts to creep back in. Is he eating enough? Does his balance seem ok? How are we going to explain that vomiting spell? As the MRI approaches, the mood steadily descends into deeper anxiety and at times, flat out panic.

We breathe deeply and reassure ourselves, after all, what else can be done but to wait and be grateful for the days we have.

Sadly, this is not the case for all of our friends. We have what they so desperately wish for now, time and hope. Recently another family that has a child with anaplastic medulloblastoma was told by their doctors, that the disease is too far advanced and they've been through all but the most unlikely treatment options. Sophia, age 4, was recently recommended for hospice care. They have responded with the grace that a situation like this can bring you to when your care for your child outweighs the fears of tomorrow. They are focused on squeezing the life out of today and memorizing their child. Our thoughts are with them.

Just Henry

It's out. As of 8:35 this morning, Henry was line free. His "tubies", as he called them are now gone.

Last night we stayed at the Believe in Tomorrow Children's House across the street from the hospital as our arrival time for surgery was to be 6am. Henry had a little bit of a nose run and a heck of a lot of anxiety that kept us all up last night, leaving everyone with scarcely four hours of sleep.

Our late night worries were complicated by a spell of vomiting from Henry who now, presumably from radiation, has a hyperactive gag reflex. This makes any sort of sincere fit of crying turn ugly. We've gotten better at relegating these spells to the 'normal' kind of throwing up, not the 'brain tumor' kind of throwing up, but it's still disconcerting.

Our early morning worries included the concern that with the light sleep, a runny nose and vomiting on Henry's resumé that we'd end up taking an overly grouchy and disappointed four year-old home alongside his overly grouchy and disappointed parents. Anesthesiologists don't like those kind of complications too much.

As fate would have it, the brevity of the surgery and Henry's symptoms' apparent waning in the 20 minutes since he woke, played into our plans and a couple of hours later, Henry was waking up and we made our way home.

The surgeon made us promise to deliver a cupcake party as celebration. A great suggestion. We made and shared cupcakes with the neighborhood on a beautiful September afternoon. No tubies, no medicine. Just Henry.

The First Game

This weekend was the opening weekend of the soccer season. We've had a couple of practices with Henry's team. For any of you who've not watched 4 & 5 year-olds play soccer - you're missing some great entertainment.

During the practices leading up to the game - Henry and I were practically and perpetually attached for the duration of practice, the only exceptions were the not-so-infrequent water breaks during which took place some of the only actually running he did. For the game, I was uncertain of how he'd respond to being on the field by himself. But with a little preparation, he was ready and out there in his bright red jersey. He kicked the ball off for the first game, he did a throw-in, a couple of goal kicks and played goalie (imagine him, hands up and bending his knees up and down - being "ready", even with the ball at the opposite end of the field).

He is, of course, no star player, but he ran and participated all independently. I don't think that anyone could have guessed that not more than five months ago, he was in the hospital receiving chemotherapy. Tara and I were so proud of how him. He's doing great!

Henry's First Soccer Practice

Last night Henry had his first soccer practice. This was one of those moments that I've enjoyed with both Anna and Sophie and had looked forward to with Henry for a long time. I almost burst with pride seeing him in his getup and rapping his knuckles on his shin guards and asking his sisters to do the same.

He was a bit tentative at practice but enjoyed it after he loosened up a bit. I'd volunteered to help as I figured I'd be out there anyway with him. He responded better once I started helping all the kids. He's slower and less coordinated than the other kids, also younger than most, but he had a good time and none of those things bothered him at all. I was proud of him for listening to the coach and following the instructions - not an easy task with 8 little friends distracting you!

Afterward we slogged over to the 'Creamery', a local ice cream shop. As luck would have it the entire fire company was pulling out of their nearby station and he about came out of his skin. "Daddy, daddy, daddy, look - over there, the firetrucks." Then to call Sophie and Anna, in what I can only assume were his most efficient words possible - "SISTERS! LOOK!" I almost fell off the bench laughing. A good start to Henry's soccer season.

A Bad Dream?

Henry had an appointment at clinic the other day. Perhaps it's because we're in our routine finally, or perhaps it's because we're just busy - it felt more like a regular old doctor's visit than a haul to the oncology clinic. Henry's blood work looks great. This was the first time in recent memory that his counts were (mostly) rising into a closer-to-normal range.

Our primary issues right now are how long to leave his catheter in his chest and the consideration of when he can return to a daycare environment. These are clearly uptown concerns. While our anxiety about relapse will itself undoubtedly recur as November approaches, right now we're trying to get about our daily lives in a 'normal' way. So we're looking at early to mid October to remove his catheter. We're told that soon we'll be able to consider getting him back to school with the stipulation that we'll have to be extra wary of flu season as his immune system is more like an infant's right now. Exciting big steps toward normal.

Last night I was headed to bed and went in to check on him. Our big boy is sleeping without a beeble (pacifier) now that he's turned four. ("I do a good job of sleeping without my beeble now don't I?") There are baby lengths of hair on his head again (except for an area in the back where he received the greatest radiation) and he's sleeping through the night and eating like a champ again.

The balance between not forgetting what's happened and trying to forget what has happened is a strange one. To think of it constantly is insanity and debilitating, to forget it completely, I feel, is hubris - like we're not being careful and we'd be asking for its return by not keeping it in mind. Can we really hope that this is it? Could we really be done with cancer? Could this all have been a bad dream? For some reason, it feels more dangerous than hopeful to think so.

Birthday Bash!

Saturday was the day we finally celebrated Henry's birthday with a proper party. He was finally able to be around his friends outside for a great time. Everything came together so nicely. All but a couple of his friends could come, family joined us, the weather cooperated beautifully and the surprise that we'd hoped for arrived with some great timing - you'll have to see the pictures to see what we mean!

The theme was fire fighting and we had plenty of props and activities. We had "Fireman Training" - The kids had to rescue a stuffed animal from the fiery playset. - then they had to take it to the 'hospital' in an ambulance.


We had a very special cake to celebrate with! Make sure to take note of the driver!!


And a very fun visit from some local friends!


We so very grateful to the Longmeadow Fire Company and to Steve and his partner for showing the kids a great time with Truck #27!!

Remembering

We've been in a whirlwind of activity since we left Baltimore. Over the past weekend we enjoyed a reunion with family we'd not seen all in one place for almost a decade. It was great fun. We visited my brother's family at their reunion in West Virginia as well which is an annual occurrence. The kids swam, rode the paddle boats and played in the sand and with each other all day in the sun. It was really wonderful. My parents left for Kansas again yesterday, and while they're still en route, we begin to settle back into our routine.

On Wednesday Henry had a clinic appointment and required blood. His counts are not returning as quickly as expected but are rather hovering at a low, but safe level. He will require an special infusion of Invtravenous Immunoglobin next week, alongside his lumbar puncture, audiology test and MRI. While Tara and I are confident that the MRI will remain the same we cannot help but be somewhat anxious.

Which brings me to the reason I needed to write today. We follow several kids of about Henry's age around the country with the same diagnosis, anaplastic medulloblastoma. One of them was recently diagnosed, roughly at end of April. The beginning of her course has been rough, lots of ups and downs, with some uncomfortable and difficult side effects. Her mother received the results of her recent MRI yesterday. The tumor has regrown, apparently resistant to chemotherapy.

This brings up memories of the past and fears for the future, deep and painful empathy for this family and for their little girl. Just as, at the beginning, one cannot believe it's actually happening or even could actually happen, we persist in the belief that we'll be the ones that make it.

SOMEWHERE

Somewhere parents are sitting in disbelief across the room from the physician telling them of their baby's cancer. Is this really happening?

Somewhere a family is plodding with slow, heavy steps down the passage to the cancer clinic for the very first time.

Somewhere a little girl is beginning to lose her tight, curly hair - but not her playful spirit.

Somewhere a bald, steroid laden boy crumpled in his stroller, stares with eyelids half open in a chemotherapy induced stupor.

Somewhere a young girl's face grows ashen as her life-saving medicine drips into her veins and saps her energy for play.

Somewhere families have moved their lives miles away from home and support to give their child the best chance.

Somewhere a doctor is giving parents the news that their child has only weeks to live.

Somewhere a baby is awakened in the middle of the night to the cold of a hospital room to bathe off the chemicals burning his skin.

Somewhere parents are making the difficult decision between subjecting their child to more harsh treatments or letting them die at home.

Somewhere a father is tortured daily by the memory of his son, lost to cancer - two years ago.

Somewhere a scared little boy is screaming and pleading with his mother not to let the doctors hurt him again.

Somewhere a father encourages his frail little girl to walk again after debilitating surgery to remove her tumor.

Somewhere a parent waits hopefully, unaware of the cancer regrowing inside their child.


Is it me?

______________

I remember the names, faces and voices of you all.

Courage, Hope and Love.

Happy Birthday to You!

Henry's four today! We're off to Hershey Park today to celebrate. Once again we'll be joined by some visiting family, cousins from Kansas.

It's been non-stop since we returned. Henry's been playing non-stop and his endurance continues to amaze (and tire) us all. A quick highlight from recent days - a good friend pulled some strings to get us into the pit before a local monster truck rally. Henry's eyes have never been bigger.



He now says he wants to be a monster truck driver instead of a garbage man...sorry Grandma Linda, maybe you can be in the pit crew. :)

A special thanks to everyone at Hagerstown Speedway and to all the terrific drivers for taking their time out to entertain us for the afternoon.

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!

Better Weekend

It's amazing what a little rest and some home time will do. Henry has perked up considerably. His mood has returned to normal and he's beginning to eat and drink a bit more. Yesterday morning he played with his sister - she was his 'dolphin' in the bath tub - after about 45 minutes of independent playing he wandered out with his shoulders slumped forward. "Sophie weared me all out" He laid down on the couch and slept for another two hours.

Today is shaping up to be similar. He's up and dressed and feeling good. We'll try to get him out for a while and tempt his appetite this morning with a cinnamon roll from Panera. He's asking to play in the sprinkler since it's a hot day. We've promised him that since he can't go swimming this summer, he's allowed to mess with the hose whenever he wants to. I think he's likely to take us up on that.

Neuropsych testing

Henry spent several hours today with a pediatric cognitive specialist for neuropsychiatric testing. They schedule kids for 6 hours, but he needed only 2 1/2! He took to the specialist very quickly, and completed his 'games' happily. We'll get the results back at our next visit with them, but we don't expect anything of significance. This was his baseline testing so that his cognitive progress can be monitored over the next several years.

After that we had a visit at the oncology clinic. He felt good today, and enjoyed teasing the clinician. His counts continue to get better and better, though we've been warned that radiation can impact them due to the temporary damage to the bone marrow in the spine. Still, he'll be starting out from a fairly strong point.

He won't have another clinic visit until next Wednesday after his first dose of radiation. We are planning on moving back into St. Casimir's (thank you, Believe in Tomorrow!) for the next several weeks. This will allow us a home base in Baltimore to avoid 4 hours in the car daily, but we'll still be able to spend weekends together at home as a family. When I told him today that we'll be going back to Casimir's next week he said, "Good, I like it there."

We feel more and more ready to face radiation. Of course, we anticipate some unpleasant short term side effects like nausea, vomiting, hair loss, and fatigue, but we hope that they will be mild and brief. Even more so, we are hopeful that this will be the end of the cancer and we won't have to do things to Henry to make him feel sick anymore.