Thursday, May 15, 2008


Henry is doing and feeling great. His days are busy (his mouth even more so), and we're enjoying him immensely. It feels a bit as though we've entered a time warp. When the cancer was found, he was a young three year old. Now he's looking at 4, and it's a very fun time for all of us. He's got some classic third child characteristics, particularly taking on the role of 'the funny one'.

Life is as close as back to normal as it's been since we started this. His medications are minimal, his appetite hearty. Other than clinic visits and our limitations on activities/visitors because of infection concerns, we pretty much do what we want. It's been really nice. "Relaxed" is the word we keep using to describe him. Almost all of the anxiety and stress behaviors we've seen from him for the last 6 months are gone.

Yesterday we were at Hopkins all day. He had some routine followup testing to check for an organ damage after the last round of chemo, which went well. He has along the way contracted a common virus (BK) in his urine that affects immunocompromised people sometimes. He'll take an extended antibiotic for that as well, but it sounds unlikely to be causing us any problems.

His hearing test yesterday showed some additional loss, but not as much as feared. It was explained to us that his loss presents as loss of clarity, not volume. (Guess who isn't going to be allowed to have the TV on so loud anymore?) Many spoken consonants are higher pitched than vowels, and he may have trouble distinguishing. The following chart demonstrates it well, the further to the right on the chart the higher pitched the sound is when spoken.

The good news is that this type of hearing loss is easier to assist with hearing devices. At home, we've certainly noticed some loss, but overall it's been very manageable.

After a lot of deliberation, we have leaning strongly toward proceeding with radiation. We are still planning to discuss Henry's situation with Dr. Roger Packer at Children's National Medical Center and Dr. Gajjar at St. Jude's Children's Hospital in Memphis, to make sure that there is nothing that we are overlooking. The logistics of treatment have not been arranged yet, but we know that it will take place over 5 weeks at Hopkins. Henry will not have to be admitted to the hospital for the radiation, but he will have to be sedated every day, so we are considering staying in Baltimore Monday through Friday so he doesn't have to suffer that long drive every day.

We'll continue to keep you updated as plans materialize.


Anonymous said...

Thanks so much for the update. So glad things are going well and he is feeling so well. So wonderful to hear of this. You all deserve this time together.

Love, Shelly

Anonymous said...

So glad Henry is having fun and enjoying being ALMOST 4!
Thank you for keeping us all updated!

Cousin Susan H.

Anonymous said...

We hope that you are enjoying your return to a somewhat normal life. Henry's journey, and yours too, has been an incredible one that has filled us with a better appreciation for the simple things in life. The ability of a three-year-old to overcome so much is just absolutely inspiring.

The Bradys

Anonymous said...

Thanks for the updates - we are glad for somewhat normal - Glad that everyone is doing well. We are thinking of you
Linda and Val