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.

Finding Normal

While we haven't fully settled into a rhythm again after the hospital, we're on our way. Henry is handling his fluid restriction in stride, the limiting of his juice being the only effective solution for the additional water weight he's carrying right now. Yesterday he was down a couple of pounds and we're hopeful that the morning weigh-in will reveal the same. He's limited to just two cups of juice a day, hoping that his body will look to the additional water in his cells as a source instead.

The chemotherapy he took at the beginning of his relapse treatment, Temodar, is scheduled for it's second round, but after getting his blood checked today, the doctors have suggested waiting a week to see if his platelets will begin coming up on their own as they're a bit low.

Today's visit was routine, an early trip into Baltimore, visiting in the playroom with old friends and new, and playing with favorite toys. The Big Event for Henry now that his chest catheter has been removed, is the blood draw. They have to stick his pudgy, water-filled arm and dig for a vein. Even the skilled nurses look to the experts in this case, and a hand tap was chosen this time. While painful to him (crying actually pumps the blood out faster!) it was skillfully and mercifully on target the first stick. Thank goodness for the experts!

After our visit, Henry and I took his accompanying Grandparents to visit St. Casimir, our second home during radiation and post-transplant. His memory is incredible. We recalled the water taxi, the outdoor courtyard, the roof of the building, the elevator, the shops - it was a very pleasant experience in the end.

This reminiscing brought to mind a recent conversation with our primary oncologist when first discussing Henry's relapse. "I guess this is the part of your job that makes you wonder why you went into this field," I asked after discussing our palliative care options and how things may evolve in Henry's coming weeks. His reply was clearly one he'd considered heavily before. "Really, its the people in this situation that we find we're able to help the most." And it's the truth. Good doctors, good nurses and a good hospital and staff have made all the difference in our journey to date. The fact that Henry can look back on months of treatment and want to go back, reflects the miracle of their care.

Home Again, Home Again, Jiggety Jig

Just a quick update to let everyone know that we are home and happy. Henry is working on his overall sleep deficit, and his swelling is better today than yesterday. There's a long way to go and we aren't sure that we are out of the woods, but hey, at least we're out of the hospital!

The Right Direction

A quick update from Tara: Bryan is down in the hospital with Henry tonight. Overall, he had a good day. We're were seen by a number of physicians, and no one seems to have a firm grasp on what's going on. Which is ok.

The goals of this admission were twofold: to make sure that we weren't missing something major, and to get the swelling to go down. I'm pleased to report that we have progress on both fronts. Essentially all of the testing done has been normal, with the exception of the low protein and electrolyte abnormalities that we already know about. This is great news. Even better, Henry's swelling seemed to respond to some of the IV medicine that he got in the hospital, and though he's still quite swollen, we appear to be headed in the right direction.

There's a little more testing scheduled for tomorrow (which I expect to be normal.) We hope to be discharged after that, with close followup this week with the oncology clinic.

The best news of all is that Henry remains in great spirits. He chatted me up the whole way to the hospital last night. He went on and on about all of the fun things about the hospital (the food, the nurses, the toys), and I think he was actually looking forward to being there for a little while. It's amazing that he's put aside all of those bad memories, but has been able to hold on to the good ones. What a trooper!

Progress, But Long Night

Henry and Tara are resting in their own room on the oncology floor after a long night in the ER. Tara said that Henry was a delight, offering the nurses his Hershey's Kisses.
He'll continue to get tests and medicines to help diagnose and reduce his swelling. For now, they are comforted to be in a familiar, albeit medical, setting, attended to by the staff we've grown to trust.
I'm heading down to relieve Tara after leaving the girls with their grandmother. Hopefully we'll get to the root of the issue soon.

ER Visit Tonight

Tara and Henry just left for the Hopkins Emergency Room tonight as after a couple hours of rest, Henry began coughing. This concerned Tara and I enough to decide that we didn't want to wait until the morning. I'm staying at home with the girls until the morning then meeting them down in Baltimore.

True to form, I told Henry and he was his little trusting self. He gave me a thumbs up as they were leaving.