Monday, September 29, 2008

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.

Wednesday, September 24, 2008

Another Step

Just a quick note to let everyone know that Henry's doing great! We got the call yesterday that his surgery to have his Hickman catheter removed is on this Monday. It's a big step to getting back to normal. He'll need to wait a full week before he can get his chest wet, but then he'll be able to take a bath again and play in the water for the first time in almost a year. He was very patient this summer when we went to the pool, and put up with just dangling his feet, but he's very eager to get in some water as soon as we can.

We're also approaching day 180 post-transplant, on October 1. This is another milestone, a point at which we can assume that his immune system is much stronger. His immunity is not considered as strong as the average person for a full year, but the chances of him having a serious infection are much smaller now. He's gotten the OK to go back to preschool, and we will probably do that in small doses for the next few months (with the plan to pull him out during the serious cold and flu season).

Thanks for checking in on us!

Thursday, September 18, 2008

A New Friend

Yesterday Henry and I made our first trip into Baltimore after about a month. It was like riding a bike, we got back into things very easily. He handled it all like a champ.

We had three tasks yesterday - first we had to visit the audiologist to get Henry fitted for hearing aids. He has permanently lost some high pitched hearing which will hinder his learning particularly at such an early development stage. Hearing aids will ease his way to learning in more noisy environments, ie. classrooms, and will also allow him to hear things that fall into that higher pitch range - birds, some language sounds, fullness of music, etc. Henry let the audiologist squeeze 'playdoh' in his ears and get the molds they'll use. He chose green for the color. Fortunately these must be changed twice a year for growth reasons so we'll get a chance to pick again soon. They'll be ready for him in a couple of weeks.

We had a quick stop a clinic to draw blood - this to prevent us from having to draw and then wait for an hour or two - then were were off across the medical campus to a building that Tara and I recalled having a tremendous amount of difficulty finding the first time last October. We found it with no problem this time and we met briefly with the surgeon who will be removing Henry's catheter from his chest. He assured us of a quick procedure, rarely having any complications and to be scheduled very soon as well. More good news!

Then were were back to clinic to get a check up by the oncologist and see the results of the blood draw. All his counts were increasing, a little slowly, but no cause for real concern. No blood products necessary which was a bonus.

While we were awaiting the results and to talk with the doctor, we met a 5 year old little girl who had just started kindergarten. After inquiring about her to her father, I was immensely relieved to discover that she had the same diagnosis as Henry, diagnosed at about the same age, received about the same treatment and is one year ahead of him with no visible disease. She has begun kindergarten on time and looks great. A sweet little girl - I've added her to Henry's friends, her name is Rachel.

Tara and I look for something to compare Henry's cancer to all the time. Many of the stories are difficult to compare and the outcomes sometimes difficult to swallow. The treatments from hospital to hospital are vastly different, the ages of the patients are too divergent for comparison, or some other small, but disqualifying detail. No two cases are identical, but Rachel and Henry are marching along pretty convergent paths and they appear to be leading to a good place.

Tuesday, September 9, 2008

Monday, September 8, 2008

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!