Tuesday, August 26, 2008

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.

Friday, August 22, 2008

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.

Monday, August 18, 2008

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!!

Wednesday, August 13, 2008

Summer winding down

Like the rest of you, our summer is winding down. The girls are getting ready to go back to school next week, and we're all beginning to long for those nice cool fall days. We as a family continue to adjust to being at home, away from treatment. Believe it or not, it is a difficult transition. We're out of practice. But things are beginning to settle in, and as school and soccer starts up, I suspect we'll all get back in step.

Speaking of soccer, we've gotten the OK to start Henry in our local YMCA league. We have a little bit of anxiety about it, mostly because we don't want him to be too discouraged if he struggles. He's gotten much more comfortable with his body and new balance, and rarely falls anymore, even on uneven ground. But we suspect that in a pack of only slightly more coordinated 4 and 5 year olds, there will be a number of spills. Hopefully the bruises to his ego won't match the ones on his knees. At any rate, he's excited about starting, and always seems to enjoy the chance to get together with other kids his age.

We went to a DC United (professional soccer) with the kids and had a good time. Henry was much more into the popcorn than the score, but it was a beautiful evening for an outdoor game.

Thursday, August 7, 2008

MRI today

We'll cut to the chase: good news today.

Henry had his MRI this afternoon, and we got the call from our oncologist on our way home from Baltimore.

His brain MRI was clean, no signs of tumor.

The as-yet-undiagnosed spot on the spine remains unchanged, as it has since his MRI way back in January (this is the third scan since then.) The longer it remains unchanged, the less likely that it is active tumor. Our oncologist has said for several months that his opinion is that it is more likely scar tissue, but we don't know for sure and so of course watch it very closely.

So...great news today. We are completely thrilled!

We have some additional fun at Hopkins tomorrow (audiology, LP, IVIG), which will prove to be a very long day. Henry has gotten so accustomed to all of these things that we ask of him. His MRI was at 1 pm today, and he's not allowed to eat prior due to the sedation. He went all morning without complaining once. He has grown up so much this year, and we are very proud of him.

Friday, August 1, 2008


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 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.