Wednesday, October 31, 2007

Happy Crick or Creating

We had a busy morning in Baltimore getting Henry's tests done - successfully I might add. He would not sit still for the first round so this time, we had some drugs for sedation, made him a bit loopy, but it made him tolerant. Mission accomplished.

We spent a lazy afternoon preparing for our week away and then for Halloween. Here's the gang for trick or treating.


After our very first stop, Henry exclaimed, "I like crick or creatin'!" We hit a few of our neighbors houses, I think he ended up with 10 pieces of candy, but he insisted his bucket was full. Tara and the girls went out and really did come home with full buckets, not to mention we didn't give out half of what we bought. I guess we'll be prepared for Easter too.

Anyway, Happy Halloween!

Tuesday, October 30, 2007

A Special Offer of Help

Tara and Henry got home this morning about 10:30 or so through the grace of a co-worker of her's, a nice break from driving and some good quality time with the girls. We had a lazy day, cleaning up a bit, preparing the house some for a return with Henry after the first week of chemotherapy, I'm still very anxious about that - even though the Oncologist said we didn't need to do anything beyond washing hands well and frequently and keeping visitors to a minimum I've installed good air filters and put signs up near the doors to remind everyone of hand washing.

A few days ago, I got an e-mail from a friend offering something unique. She offered to be a point person for the offers of help; to make sure that we didn't have 10 people trying to do the same thing, or not knowing what we really needed. We are grateful to her for helping us to make the best use of those offers for help. Please contact Maury via her e-mail address: We haven't given her any sort of list or anything, but as we find what we need, we will let her know.

It's only 9, but Tara and I are exhausted. Its another trip to Hopkins early morning tomorrow. We're expecting to get an echo cardiogram (heart test) and audio test (hearing). We have to turn in samples of Henry's urine to ensure his kidneys are working and clearing fluids correctly and get his central line flushed and re-bandaged. We expect to be home in plenty of time to don costumes and get out for some quality Trick-or-Treating as a ghost who will be accompanied by a witch (Anna) and a bumble bee (Sophie). If you watch out your window and see a ghost riding a 'cruckie' you'll know its Henry. :)

By the way - he only noticed the tubes coming out of his chest once today. I told him that they were for the doctors later - and not to pull at them, because that would hurt. He shrugged and said 'OK'. That was it. Amazing.

Bit of Relief

Henry had his follow up x-ray very early this morning and has been cleared to go home. A family friend is picking them up from the hospital this morning for me. Henry had a bit of a rough night, a couple of tantrums - "I want to go home!" - but we're of the mind that the stronger he is the harder it is to be in the hospital, a good sign.

Monday, October 29, 2007

Return to the Hospital

Sunday afternoon, Tara's family brought a wonderful brunch. It was so good to see the kids playing together outside, laughing, taking rides in 'cruckie' (Henry really never gets tired of it) We all caught up with each other and ate wonderful food and enjoyed the day. It was nice to be around so much family.

We were showered with more gifts. The generosity and care of the people around us, both family and friends, has been touching. Henry has received so much that he adopts a new favorite stuffed animal almost daily. His current favorite is a little penguin from a friend of his Granya's. Baskets of gifts from coworkers and from family members - and their coworkers - for the girls, care items for Tara and me - and the messages of hope that continue to come like waves. The things are helpful, but the message that is sent with them is so important to our well being right now. We have difficulty expressing the depths of our appreciation to you all.

Sunday afternoon, after the last of family, neighbors, and old friends had left, Tara, Henry and I packed up for a return to the Children's House. Henry thought the play area was terrific. He mostly enjoyed being pushed around their basement area in an old fashioned pedal firetruck. (imagine that!?) We ate dinner provided us by volunteers from the university and headed to bed. It was at this point Henry began to catch on. He slept restlessly through the night and we had to awake early to be at surgery check-in.

We played for a while in the surgery waiting area. In order to calm him down enough for sedation, they gave him a drug that made him a little punchy. It was certainly better than having to hold him down for the mask - not fun...

The surgery was mostly uneventful, although afterwards they decided to hold Henry for overnight observation. There was a slight abnormality on the post operation x-ray that the doctors were concerned about - likely nothing. Tara and I learned to flush his central line to prevent clotting, which we'll have to do daily during his stretches at home. A little nerve wracking for me, I'm so afraid he'll yank that thing right out of his chest the first chance he gets and I'm afraid I'm going to be so paranoid about infection that it'll drive everyone crazy.

So I came home tonight at Tara's urging, thinking that her visiting parents would be able to bring her home in the event that Henry would be released this evening. In the end they're still at the hospital overnight, hoping for an early release in the morning. We were hoping for one hospital-free day this week, but I guess that just not in the cards.

Saturday, October 27, 2007

Carpe Diem

Its sunny today after days of rain. Grandma made pancakes for us all this morning. Henry and I went off to Lowe's today to build a firetruck at their kid's clinic. I had the wrong week though - they were building spiders for Halloween. The woman running the activity found an extra fire truck (as well as another truck for us) that was leftover. Henry thought the hammering was loud and I think he enjoyed sitting on the tractors more than the activity.

We got hungry - his appetite right now is insatiable - so we went to McDonald's for a snack. Hear Henry tell the story.

It was really a wonderful morning. The fall leaves are brilliant, Henry was happy, we had such quality time together. He was making his stuffed bear dance in the backseat to the music. I felt like I just wanted to keep driving, just really far away from things, as if we could stop time - or maybe just delay it a little. It was a good morning.

After a little TV and down time, we took off for the pumpkin patch. As we were leaving, Henry said 'You and Mommy take care of me. That is nice'. So sweet. Each year we head up to Waynesboro to Reynold's Farms. Its so picturesque. We were afraid it would be muddy and got into some scrubby clothes, but it turned out just right. We all found pumpkins, then took a nice scenic ride home.

We spent the rest of the afternoon playing games, carving pumpkins and doing puzzles. Everyone really had a perfect day.

As for me - I put Henry to bed, read him 'If You Take A Mouse To School', sang to him, and as he hugged me, he said 'I want to give you kiss'. I couldn't ask for anything more.

Friday, October 26, 2007

Normal Friday

Tara was off to Children's in DC early today. Henry, my mother and I went to Border's for my mom to chat with friends she'd left behind years ago when they moved away. It was nice to see her getting some time to herself as she has been so helpful here during this time. Henry and I went to McDonald's for a snack. He loves their hash browns and ate a side of eggs. I love to see him eat now. He'd been sick for so long and really didn't eat a ton in the hospital. He eats so much now, he's competing with the girls. The McDonald's we went to has one of those trains running along a track attached to the ceiling. He thought that was pretty cool. We tried to chase it on our way out and he giggled, its like warm sun rays on your heart to hear it.

We dropped back by Border's and read some books, Diego and a Halloween book. He had grilled cheese and 'cristy' (twisty) noodles for lunch. Anna and Sophie got home quickly after and a couple of Henry's daycare teachers stopped by with gifts and to see him. They brought him a coloring book and a picture album of his friends at school. All the gifts we've received have been so thoughtful. He's feeling downright spoiled and we don't mind at all. :)

We received the same story from Children's that we did from Hopkins. Reassuring in a way. They posed the information slightly differently and its made us rethink some of how we may proceed. Either way, there are no easy choices to be made. Some good news, our surgery is very early on Monday morning and The Children's House has offered us a room again to stay the night - an unbelievable blessing to be so close.

Henry's in the other room now, playing cars and watching TV with my mom. I can hear his little voice and he's happy. We're looking forward to our normal weekend activities; soccer games, errands, family brunch.

PS - I've posted a video on 'Henry and Cruckie' - YouTube to the rescue! :)

Thursday, October 25, 2007


After two days of driving to Baltimore and back, we have a day at home. Yesterday was a lot of logistics - running around Hopkins trying to find the right building. We push Henry in the stroller and he laughs when we go up and down the sidewalk curbs. He's starting to understand what we're doing in that he recognizes the hospital now and wants to go home. At night he wakes up saying "I want to go home" - during the day we've come to expect some tantrums, usually at little things, normally inconsequential.

A few months ago a friend of mine gave us one of those motorized kid trucks. Henry loves it. He called it 'Cruckie' (can't quite say his T's yet). Cruckie burned up batteries (quite expensive batteries) really fast - but yesterday I decided we needed to try again. Henry had a terrific time. He picked up the mail from the mail box and 'drove' his sister back from the bus stop. He laughed chasing some of the neighborhood kids around the street and going in tight circles, getting dizzy.

Henry's plan for treatment is shaping up to look like the following:

  • Monday - Surgery to put in his central line

  • Wednesday - Echocardiogram (heart sonogram) and Audio test (under sedation)

  • Thursday - Admission to the hospital (7 days) to begin chemotherapy.

Henry's chemotherapy regimen will be a 3 monthly cycles. We'll spend a week in the hospital for the administration of the therapy, then weekly checkups. We will give him some of the medicines at home, some of these medicines are simply for side effects. During the days following Henry's treatments, his white blood count will drop to zero then return. When it returns sufficiently we begin again. After two cycles of chemotherapy, we will have an MRI done to see how well its working. That's really all the further we're looking ahead right now.

Tomorrow we go for a second opinion from Dr. Roger Packer at Children's National Medical Center. We feel this is necessary for our peace of mind, but have been reassured by Dr. Packer that we are in good hands at Hopkins and that he likely will not give us a different recommendation. Because of the rarity of this cancer, the hospitals work together on a protocol of sorts in order to compare and improve results.

Henry should be home and alert for Halloween, despite his surgery. He has consistently said he wants to be a ghost. He's looking forward to dressing up and seeing his friends, not to mention the candy.

Tuesday, October 23, 2007

Shower of Encouragement

Thank you all for your outpouring of love and encouragement. After a long day spent in Baltimore at Hopkins for preparatory tests, it was wonderful to read all of your tributes.

Today we met with the oncologist, Dr. Parsons to discuss details of Henry's chemotherapy. We return tomorrow for a meeting with the pediatric surgeons to discuss Henry's central line (a direct intravenous delivery device) for his chemo administration.

Henry had his best day yet - he has come off of the pain medication and is finishing some other medication as well. This reduces side effects and allows his mood to stabilize. He was happy and laughing today, playful and interactive. It was a breath of fresh air for Tara and me.

Monday, October 22, 2007

Henry's Challenge

On Saturday, October 13th, our day started very normally, on our way to a soccer game for Sophie. Before the game started, however, Henry could not keep his balance and in fact, fell to the ground unable to walk.

We took Henry immediately to the Washington County Emergency Room where he was diagnosed with a mass in his cerebellum, his coordination center. This tumor was disrupting the flow of cerebrospinal fluid and causing his imbalance.

An ambulance was sent from Johns Hopkins University Hospital in Baltimore. Tara and Henry rode down together with me following after a brief visit home for essentials. We met Sunday with the neurosurgeon, who, after an MRI, gave us several prospective outcomes based on the likelihood of each. The first of these was confirmed several days later by a visit by oncology - Henry has a medulloblastoma of high-risk nature.

The tumor was approximately 90% resected (removed) but had disseminated along the spine through the cerebrospinal fluid. We spent several days in the hospital with Henry with the support of close family and friends who cared for us and our children during this difficult week. Henry is now able to walk again without disorientation. He has some visual deficit that should be corrected over time with minimal treatment and is a bit unsteady, requiring a hand to walk, but is improving with each step.

Our road ahead is uncertain and scary. We expect chemotherapy and radiation therapy over the course of many months. It has only been a week since we've discovered Henry's challenge. The weeks to come will tell us much more.

Finally - to those who've been our support recently - Thank you. This is something we will be unable to do alone and you've all made it clear we won't have to.

[additional detail]

Contact Maury

Maury is our 'point person'. She is collecting and organizing offers for help. Bless you Maury. You can contact her at

Come Visit Henry

If you'd like to visit Henry, either in the hospital or at home, please e-mail us at or call us at 301.730.0460 to arrange a visit.

Send a Video Message

To pass the time in the hospital, we've been recording the girls and grandparents and showing the videos to Henry.

If you'd like you can record something and send it to us at (if its small) or upload it to YouTube. PLEASE TAG IT with HenrysChallenge (all one word) so we'll be able to find it!

NOTE: Henry enjoys these immensely and it helps break up the monotony of the hospital. Most interesting to him are kids doing normal kid things; playing, showing a favorite toy, singing a song or even cool things like construction vehicles or firetrucks! Thanks!

Be There

Your calls, offers to help, thoughts and prayers are our support network.

Bracelets for a Cause

Bracelets for a Cause

The initial stock of 500 HelpHenry bracelets have been sold, raising sufficient funds to sponsor Francisco as well as purchase other needs for his village. Another order of bracelets has been received and over 100 of those have been sold as well. Thank You!

Bracelets are a quiet reminder of Henry's Challenge and of the need to remember our sisters and brothers in less fortunate situations around the globe.

A $2 donation is requested for each bracelet. Proceeds will benefit Francisco, a little boy from Brazil born on the same day as Henry.

Please email to purchase or for more details.

Thanks to the Glade United Church of Christ, Senior High Sunday School Class for arranging this.

Support the Children's House

We were beneficiaries of a nearby residence provided by Believe in Tomorrow.

Give Blood

Henry will require blood transfusions. While blood is not banked and given from family or friends, we will be using the current supply. Red Cross.

Get a Flu Shot

To reduce the risk of infection during Henry's chemotherapy, we are asking family and friends to get a flu shot.