Visiting

Today was a visiting day. We visited with our neighbors, we visited with Tara's folks, we visited with some folks in the park we went to while the kids played and made new friends. Mom and Tara visited Little Italy and brought back some terrific food. Many, many people visited the area we're in now in search of fun St. Patrick's Day festivities. Festivities which I expect will go on well into the night.

While I could detail much of our day of relaxing walks and conversation, I was delighted when Sophie wrote down some of her day. I thought I'd let her words do the talking tonight.

"This hows (house) is a naus (nice) hows my bruthr has cansr we haft to stay at this hows We haf los of tous (toys) he likes to play with tham. I play with him my sister Anna plays with him to. he staus (stays) in the hostpile (hospital)."

accompanied by a picture of Henry's hospital bed

---

"I have a friend namd Sophie. my nam is Sophie to. We went to the parck it was fun than we wnt back hom. Then I rod on my sckodr (skooter) it was fun to. Then I had happy howr. Then I did a posol (puzzle) I did three ckarectrs then I wocht tv then I rot this store(story)."
The End.

- By Sophie Scheck

A Peaceful Day

We've had a quiet day here at St. Casimir with our family. We've brought the girls down to enjoy a long weekend together. We took a walk, hit the grocery store and played out in the courtyard of the house for a while. The kids are winding down for the evening watching a movie while Grandma and Mommy are getting some rest and relaxation at a local yarn shop as knitting has become the pastime of choice.

Henry was very sweet the latter part of the day. He gets so frustrated sometimes and it makes it hard on all of us. I feel especially bad for him during these times because it seems so clear that he just doesn't know how to handle his emotions and the facts of his situation. Alternatively, late in the day, he sat on my lap and let me tickle him, ending in giggles, not anger. We cuddled on the couch until dinner, watching television and teasing each other. It was really wonderful. He had much more to drink today than in days past and ate just a little bit of ice cream. Good signs that his appetite is improving.

Tomorrow we'll have another clinic appointment, hopefully routine. Yesterday at clinic, Tara wisely requested a different (better tasting) medicine for Henry which went over much better tonight than in evenings past. So now, I'll prepare his TPN and coax him to bed and we'll all quietly exhale after a peaceful day.

The Plan

Last night, as Henry fought fatigue and bedtime he said, "Mommy, I have a plan."

It takes little kids to remind you of all the things that you say that you don't really realize that you say. Apparently, I talk about 'the plan' a lot.

"How about we go lay down for 2 minutes, and then we'll get up and watch TV again?"

It was a good plan, but I had a better one, which involved sleeping uninterrupted for 12 hours. Unfortunately, neither came to fruition.

Once Henry let go of that plan, he tried again. "Mommy, I have another plan. How 'bout in the morning time, we'll go to the grocery store and get everything that we need to make chex mix, and then we'll come home and make chex mix?"

Now that one I could go for.

Somehow the days pass quickly, though we get very little done. Today we hit the grocery store, and had an afternoon clinic appointment. Henry's numbers are holding steady. We again got the list of do's and don'ts for him after the transplant. For now, we go to clinic at least three days a week. He'll have a bunch of testing next week, including another MRI, hearing test, and echocardiogram.

But first there's some chex mix to make.

Henry Daylight Savings Time

It's 8pm and Henry's still going strong. He slept OK last night, but didn't get to sleep until around 11pm. His body clock is about 2 or 3 hours behind normal. None of us got up until about 8:30 this morning so we're just assuming we'll have a later schedule than usual.

Everyone knows that Henry loves his wheels. Cruckie (which by the way, may soon be renamed, Thruckie - he's very proud of himself for getting his T's better) as well as the oncology floor car and mogocycle. St. Casimir didn't have anything to compare, so this morning we presented Henry with his very own Mogocycle, complete with turn signals and many fun sounds.



He had a good time assembling it as well as driving around a small park near St. Casimir. The signs of spring, warmer days and buds on the trees, have been encouraging to the soul.

24 Days

We've been sprung! We were released from Hopkins after a 24 day stay sometime around 1pm today. It kind of felt like we were moving out as there was so much stuff to migrate to the car. We all got to St. Casimir's in good shape and after a quick tour, we each took naps, uninterrupted by doctors, nurses and beeping pumps.

Henry and I walked to the grocery store nearby for a few supplies. We then headed over to the Children's House to pick up a couple of packages there for us with some surprises for Henry and the girls. We grabbed some dinner at a local Thai restaurant for Tara and I. Henry's dinner arrived earlier - internal nutrition via pump (TPN). He'll have to be hooked up overnight for him to get the 12 hour infusion of nutrients. He did express an interest in eating but decided to 'save it for later' each time. This is a pattern that we remember from other chemotherapy cycles. Henry has two or three medicines to keep him infection free that we'll have to administer and we'll have to make trips to the outpatient clinic every few days.

Henry is excited to have some freedom to roam and tomorrow we expect to tour the nearby neighborhood allowing him to enjoy some time outside. We're close to the water and boats, which I'm sure he'll enjoy seeing. I expect that we'll have the girls down soon, as Henry has complained that "I really can't wait to see Anna and Sophie". So while we appreciate the folks at the hospital that take care of us, we will really enjoy not seeing them for a few days.

Last Day

Some old friends from Pittsburgh sent the girls a care package. There was a neat bracelet kit inside that allows you to slide letters on and off of the bracelet to make it say different things whenever you want. Sophie and Anna both made their own, then put one together for Henry that said "LAST DAY". He proudly showed it to everyone today.

Henry is doing great, more and more active every day. His legs are very weak from being essentially immobile for the last 2 weeks, so he's very unsteady on his feet, and has actually fallen a couple of times when he got away from himself. He complains that his legs hurt if he's up too long, but had endless energy for playing on the floor. He's also been riding his "mogocycle" around the floor at the hospital, which has got to be good therapy for those legs. We know he'll bounce back soon.

He'll be discharged on three antibiotics, to be continued at least until the next admission. He also will need IV nutrition, as he's eating and drinking nothing at all right now. We've been told it takes a few weeks for that to come back, and since there's no talking a 3 year old into eating when they don't want to, we're trying to roll with it the best we can. He tolerates the TPN very well, and his weight is stable.

I am again feeling the anxiety we had leaving the hospital after his first chemotherapy. His immune suppression is much more profound this time, and even though his numbers look good, he's at risk of serious and aggressive infections. This is why they've asked us to stay within a few miles of the hospital - if he gets a fever even fifteen minutes can make a difference between a nuisance admission and a life-threatening infection.

Our time at St. Casimir's will include lots of medical time - appointments, testing, and medications. I don't anticipate that our time there will be particularly restful for Bryan and I, though I can't wait to get our whole family together for longer than an hour. More than anything I'm looking forward to seeing this brave little soul get out of the hospital and see the world again. He deserves it.

Man-to-Man

My mother spent the day with Henry today while I came back to Hagerstown to be with Anna this evening. She and I are going to her first spring soccer practice tomorrow. Tara and Sophie headed back to Baltimore after school today to relieve Mom and to kick off our weekend together.

Mom described a good day with Henry, similar to recent days, filled with playing and a brief adventure off the floor. Henry's beginning oral medications as part of our transition to out patient care, hopefully starting Monday. They've not been easy to get in him, but he's slowly getting better at it again. The M&M and Apple Juice chasers help.

So tonight, Mom is at St. Casimir's with Sophie, Henry and Tara are at the hospital and Anna and I are spending the evening here. Nothing like a little man-to-man defense.