Winter Wonderland

While the kids at home played in the snow, Henry and I (Tara here) had a great day here in the hospital.

To start with, the Child Life department at the hospital hosted a make-your-own gingerbread house. Each kid got their own fixin's, in the (maskless) comfort of our rooms, but we watched on the inhouse hospital channel how to do it in real time. It's a neat system, you can call them up on the phone and ask questions or give ideas...it's like a virtual, germ-free playgroup. Anyway, we did pretty well, as you can tell by the pictures. Henry took great delight in my sticky icing fingers.



We also got a visit from Dr. Boots and Dr. Spats, who run the CCU here at Hopkins - that's the Clown Care Unit. Henry took great delight in hiding under his blanket before they came in, and as highly trained professionals, they ran with it. They had him laughing out loud, and we hope to see them again soon.

We also took several trips around the hospital. Henry really enjoys getting off the floor, and as long as he keeps his mask on we have been allowed to travel away. We hit 2 restaurants and the coffee shop, as well as watching the constructions workers search for things under the light cover of snow.

All in all, it's been a great day. His spirits are good, he's accepting of being here, and he seems to be making the most of a less than ideal situation.

Let it snow.

Snow Day

Henry's second round of chemotherapy medicines began yesterday. We started again with Methotrexate and Vincristine. The doctors have decided to administer only half of the Vincristine this time due to the constipation complications that Henry endured last cycle. We've been assured that this will not compromise his outcome. These drugs work in tandem with one another and the doses are based only on weight and height so some individual tweaking is expected.

Henry and Tara slept well last night which was a relief to everyone. Anna and Sophie do not have school today and are currently out helping our generous neighborhood children in clearing the driveway of the cause. I suspect some hot chocolate and indoor playtime will be in order later to warm them up.

I'm enjoying a quiet day of cleanup, laundry and organizing holiday details. Its nice to be busy with those things but I find myself easily distracted and daydreaming a bit - just phasing out and kind of forgetting what I'm supposed to be doing. There is a rhythm in the hospital. There are things that need to be tended to and now without those immediate demands, its so easy to become lost in thoughts.

Later today we plan on taking a trip to Baltimore to visit Henry. I had the girls wear masks for a while today to make sure that they can tolerate it if need be. Sophie is coughing a lot so I'm thinking they'll be a needed precaution. We'll decorate Henry's room and just let them be together for a while. It will be good for them to see where he is and meet some of the people that help to take care of their brother.

No Greater Love

Henry's pheresis yesterday went as planned. The procedure of removing and separating his stem cells began early with the placement of a special line in his groin area. For this a special team of two nurses spent an attentive day at a large machine which withdrew his blood, separated it, then replaced it, warmed, into his body. He was under heavy sedation all day which also meant he was on a ventilator throughout. This was to ensure that he did not move during the procedure as it would hamper the results.

I spent my day mostly with logistics - moving our stuff from the car, checking out of The Children's House, moving the car - and with some catch up sleep, which while not completely restful in the chairs in the P-ICU (Pediatric Intensive Care Unit) was better than nothing and got me through the day. I also visited with some of the other families there and got a rare window into their lives.

One woman's daughter was recovering from toxic shock. Another family from North Carolina was in for their daughter's 18th surgery for brittle bone disease. A two-year-old little Chinese boy next to us was awaiting surgery for a heart defect which prevents his blood from oxygenating his lungs sufficiently. His adoptive mother had just brought him back from China less than a week ago. He'd been abandoned due to his condition and had been in an orphanage since very early. His new family had adopted him fully aware of his condition and has likely saved his life in doing so. This was their 3rd special needs adoption.

The different conditions we've learned about and had exposure to, including our own, have been random diseases, handed to us by fate. Families are forced to adjust their 'normal' to accommodate their new realities. For them, and us, there is no alternative. The family of the Chinese boy had chosen their situation, deliberately, with full knowledge. I spoke to the mother at some length and they see their choices as their normal and simply what they are supposed to do. To me, I see a nobility and self-sacrifice that I'm humbled by. It makes me feel honored to have met them, I hope for the best for the little boy's surgery, and am especially reverent of the capacity of human love.

Because Henry is here a bit early for his next round of chemotherapy, he has no medicine attached and his counts are good. We're free to move around the hospital with relative ease. This morning, instead of the wagon, he chose a small car with a push handle for me navigate. We went all over the hospital. He honked and waved at the nurses and shop owners. We put his purchased snacks in his 'trunk' and giggled when I purposely crashed into things or chased after the nurses.



He's already asking to go home. I told him that we have to stay for a long time again. He asked, "Will friends visit me?" - a call to his Grandmothers to come again. He's becoming very accepting in some ways, defiant in others. I like to see the fight in him, but some acceptance is good too.

A Good Day

Henry and I dawdled today. We took our time getting ready to leave the house and we made our way into Baltimore with no particular time frame in mind. I took pleasure in watching the fall leaves being blown furiously around by the wind and the sometimes-gray, sometimes-sunny sky that resulted from the gusts.

We checked into the Children's House and picked up passes to the Aquarium and once we arrived in the Harbor, ate lunch and then proceeded on our own version of 'Finding Nemo'. On the way we saw the Dolphin show and caught a shortened version of the 'Polar Express' with special effects. I made sure we detoured to catch sight of a shark and a stingray and then finally found the anemones where both Nemo and Dory live. Mission accomplished - he was ready to go. Really, what more was there for a 3-year old?

We had the tactical business of having to stop by the clinic for a blood draw and of running his last dose of GCSF before bed, but these were trivia. We returned after our clinic visit to a meal of pizza and salad, once again a gift from the Children's House. Henry explored the basement full of toys for a while and then setteled down for a movie, for which he lasted all of 20 minutes. He was asleep on my chest.

It was a good day.

Hair Fairy

When the kids lose their teeth the tooth fairy comes, but who comes when your kid loses his hair? Well, before round 2, we decided to summon the Hair Fairy. Henry awoke to a new book and two dollars, which was mostly for something to put in his new Lightning McQueen wallet. The book was 'Clifford's Day with Dad'. Seemed fitting that we're headed to the Aquarium for a day together. That Hair Fairy sure is something.

Calm Before the Storm

Today was a gift. I'm starting to feel like that more and more. Today, though, despite being a little worn down from yesterday, we all relaxed more than we have in a long time. We had more visitors today, some from out of town with words of consolation, others from close by with company, distraction and food. A fire burned in the fireplace while we allowed the kids a few early Christmas gifts as we're not sure what the official holiday will bring. I've become fond of candles over the last year and lit several around the living room. There was a warm glow over the entire day.

Tomorrow I'm taking Henry to Baltimore. We're going early to visit the National Aquarium. The girls visited recently and enjoyed it. I figured it was the least we could do for Henry before subjecting him to round two of chemotherapy. He's looking forward to seeing all the sharks, stingrays, and dolphins. We visit the clinic sometime before 5pm to have them type his blood for Tuesday's surgery and stem cell harvest. Then we're off to spend the night in the Children's House again. What a wonderful resource that has become for us.

So tonight we take stock of our blessings and steel ourselves for the next round. It helps a bit knowing that we can hope to expect some good days after the bad, but it doesn't really soften the blow of what's to come. Here we go again...

Hooked

True to his current trajectory, Henry had his best day at the hospital yet yesterday. The most difficult part was getting his weight. It was the first thing that had us do and he was just not going to take his coat off. After that though, he played in the playroom they have at the Oncology clinic while he received his dose of G-CSF. We've given this to him before, but it was only over the course of 20 minutes. Now they believe that a longer exposure over 2 hours will have greater efficacy. So we sat and watched Dora and he pretended to talk on the phone to Mommy and his sisters. Altogether a very easy, gentle day for all involved. In fact, something I never thought would happen, Henry waved and smiled at the Oncologist and nurse today. He continues to surprise us with his adaptation to the extremes of his situation.

This morning the home nurse came to instruct us on how to administer the G-CSF at home. Its clear why the home nursing is an industry. The room stays are by far, the majority of the cost when we see the itemizations from the hospital and insurance company. Despite the thousands of dollars of equipment they lend us and the nursing visits, it is clearly more cost effective - not to mention more comfortable and humane. Henry calls this time "being 'hooked'", like 'hooked' to his 'tubes'. He seems to prefer sitting when he's hooked, but today he was more mobile. We put his medicine pump in a dog backpack that was given him recently to hide it and make it more portable. We only hide it to keep him from having to remember what's going on. He doesn't really seem bothered by it all that much. He played on the floor for a while with a toy bus and a play kitchen mixer; he walks to the bathroom with some help and also aided Mommy in wrapping presents.

I'm not sure if its easier or harder awaiting chemotherapy this time. To a large degree we know what to expect. Repeating what we've done isn't pleasant to consider, but I suppose its slightly better than not knowing. Looming large is the end of this cycle at which we will have an MRI of Henry's brain and spine to see how receptive the cancer has been to the therapy thus far. There are obviously gradients of the answer to be found from that test. The prognosis can change significantly based on that outcome.

Later today, Tara is going for lunch with the women in her family - a long-standing tradition. I will take the girls late this afternoon to a soccer game in, of all places, Baltimore. This should constitute some enjoyable time to spend relaxing with them and some friends for both Tara and I today.