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.
Showing posts with label st.casimir. Show all posts
Showing posts with label st.casimir. Show all posts
Wednesday, November 19, 2008
Friday, July 11, 2008
Five Days
It's Friday and Henry and I returned home unexpectedly early yesterday evening. He's completed 24 of his total 29 radiation treatments, the remaining five left for next week now after the machine (a linear accelerator) had problems that couldn't be fixed yesterday.
All and all he's tolerating the radiation regimen very well. It's caused only some very minor appetite problems, his immune system has had a few small issues and the back of his neck is peeling like he's had a bad sunburn. He's scratched at it a little and made it bleed slightly, but that's the extent of the discomfort he's had to endure. He's acclimated quite well to the anesthesia and not being able to eat in the mornings too. Additionally his regular weekly bandage change for his catheter has been done under sedation for a month now so he has avoided that event successfully which is a bonus.
We've treated our time in Baltimore like a vacation otherwise. We've been to see Kung Fu Panda twice now and also caught Wall-E. We've taken several rides on the water taxis which are a real hit. We went to the Baltimore Zoo one day as well and Henry got to feed the giraffe which he still is talking about.
We've toured the U.S.S. Constellation, the Lightship Chesapeake, and the U.S.S. Torsk Submarine, and the Seven Foot Knoll Lighthouse. The girls were with us last week and we got to ride the dragon paddle boats in the harbor and got an impromptu tour of a Baltimore County Fire Truck.
Most recently we were treated to a ride on Sea Bard, a sail boat of a friend that we tooled around the Harbor on. The captain was kind enough to let the kids pilot for a while, which I'm sure confused many of the other folks out in the harbor that day! Thanks Captain Michael!
I would never have thought it, but our time at Casimir this time around has been downright pleasant apart from the obvious occasional family separation. Henry's endurance astounds us all - he knows no such thing as 'radiation fatigue'. After all he's been through, the little kid in him still comes shining through very consistently and his increasing maturity makes him a good partner to spend the day with.
So it's with great excitement that we anticipate his treatment finishing next Friday. Only 5 days left! We will miss our new friends, but I'm sure they'll understand how glad we'll be to be finished after 9 months of treatments!
All and all he's tolerating the radiation regimen very well. It's caused only some very minor appetite problems, his immune system has had a few small issues and the back of his neck is peeling like he's had a bad sunburn. He's scratched at it a little and made it bleed slightly, but that's the extent of the discomfort he's had to endure. He's acclimated quite well to the anesthesia and not being able to eat in the mornings too. Additionally his regular weekly bandage change for his catheter has been done under sedation for a month now so he has avoided that event successfully which is a bonus.
We've treated our time in Baltimore like a vacation otherwise. We've been to see Kung Fu Panda twice now and also caught Wall-E. We've taken several rides on the water taxis which are a real hit. We went to the Baltimore Zoo one day as well and Henry got to feed the giraffe which he still is talking about.
We've toured the U.S.S. Constellation, the Lightship Chesapeake, and the U.S.S. Torsk Submarine, and the Seven Foot Knoll Lighthouse. The girls were with us last week and we got to ride the dragon paddle boats in the harbor and got an impromptu tour of a Baltimore County Fire Truck.
Most recently we were treated to a ride on Sea Bard, a sail boat of a friend that we tooled around the Harbor on. The captain was kind enough to let the kids pilot for a while, which I'm sure confused many of the other folks out in the harbor that day! Thanks Captain Michael!
I would never have thought it, but our time at Casimir this time around has been downright pleasant apart from the obvious occasional family separation. Henry's endurance astounds us all - he knows no such thing as 'radiation fatigue'. After all he's been through, the little kid in him still comes shining through very consistently and his increasing maturity makes him a good partner to spend the day with.
So it's with great excitement that we anticipate his treatment finishing next Friday. Only 5 days left! We will miss our new friends, but I'm sure they'll understand how glad we'll be to be finished after 9 months of treatments!
Friday, June 6, 2008
A Rough Beginning
Henry's radiation treatments began Wednesday. Despite having been sedated many times before without lasting effect and being told that the effects of radiation wouldn't be manifest until weeks into treatment, Henry has been an anxious, tired mess since this began, Wednesday afternoon.
The girls and I arrived to St. Casimir's about 5:30p on Wednesday only to have Henry vomit shortly after. We expected grogginess for a few hours, but not all day and certainly not this. He proceeded to have several more episodes of the same, increasing our anxiety that his tumor had returned. While rather unlikely, we spent last night in the Emergency Room at Johns Hopkins getting a CT scan of Henry's head. Fortunately the scan showed nothing of the sort to our great relief.
Henry finally slept well last night and woke up to attend his third treatment this morning in fairly decent spirits. We're home now and have a three day respite in which to observe his condition in the absence of sedation and radiation treatments. We get back at it on Tuesday due to a staffing glitch preventing our scheduled treatment Monday. We're hoping for a quiet, long and restful weekend.
The girls and I arrived to St. Casimir's about 5:30p on Wednesday only to have Henry vomit shortly after. We expected grogginess for a few hours, but not all day and certainly not this. He proceeded to have several more episodes of the same, increasing our anxiety that his tumor had returned. While rather unlikely, we spent last night in the Emergency Room at Johns Hopkins getting a CT scan of Henry's head. Fortunately the scan showed nothing of the sort to our great relief.
Henry finally slept well last night and woke up to attend his third treatment this morning in fairly decent spirits. We're home now and have a three day respite in which to observe his condition in the absence of sedation and radiation treatments. We get back at it on Tuesday due to a staffing glitch preventing our scheduled treatment Monday. We're hoping for a quiet, long and restful weekend.
Wednesday, June 4, 2008
Radiation: Day 1
Henry begins his radiation today. Tara took him down to St. Casimir's last evening as his treatments begin early. Early treatments are welcome because he cannot have anything to eat or drink due to the anesthesia he must receive daily. Henry will be receiving radiation to his entire spine and head. They will give boost doses to what is called the 'tumor bed' and to the suspicious spot on his spine. The treatments take less than twenty minutes or so.
We are increasingly settled about the decision and have turned our attention now toward managing him as well as our family through his treatment schedule. This seems to be the typical cycle; head up to consider the big picture, head down to get it done.
We are increasingly settled about the decision and have turned our attention now toward managing him as well as our family through his treatment schedule. This seems to be the typical cycle; head up to consider the big picture, head down to get it done.
Monday, April 28, 2008
Trucks, Trucks, Trucks
On one of the several wonderful days we had at Casimir last week, we loaded Henry in the car and drove up to White Marsh. We had previously arranged to go to a new store there called, RideMakerz. If you've not heard of RideMakerz, the concept is similar to the Build-a-Bear idea. Kids can go in to the store, pick their car or truck, choose their sound, tires, hubcaps, chassis and accessories. They're outfitted with little assembly stations and the kids can put the car together. You register, get a 'title' and a license plate and if you're really in the mood to go all out, a remote control.
The assistant manager agreed to meet us an hour early in order that Henry could make his ride without the threat of germs from nearby 'mechanics'. We circled the edge of the store several times, sizing up the mini coopers, dump trucks, race cars and others. In the end Henry settled on a fire truck with a monster truck chassis. I think the available siren sounds tipped the scale for him. He had a great time assembling it and an especially great time playing with it on the floor with the assistant manager.
Our attitude toward toys has loosened a lot lately. Normally we wouldn't have considered buying an item like this for a three year old. The experience of building it and the smiles it brought were worth so much and we owe that to the considerate and thoughtful management at RideMakerz. Not only did they open the store for us. Not only did the assistant manager engage Henry and play with him on the floor. Not only did they provide a terrific memory and generate smiles for Henry. But they wouldn't accept any payment for it. Thank you RideMakerz and specifically, thank you Jordan. You made Henry's day!
Our family has been the object of so much giving, much of it by family and friends. The generosity of strangers is such a wonderful surprise and reaffirms that there is an awful lot of good in the world too.
By the way, while there are only 7 stores in the country now, there is one in Hagerstown on Garland Groh Blvd near the new Best Buy. If you've got a special little boy in your life, it's definitely worth a visit!
The assistant manager agreed to meet us an hour early in order that Henry could make his ride without the threat of germs from nearby 'mechanics'. We circled the edge of the store several times, sizing up the mini coopers, dump trucks, race cars and others. In the end Henry settled on a fire truck with a monster truck chassis. I think the available siren sounds tipped the scale for him. He had a great time assembling it and an especially great time playing with it on the floor with the assistant manager.
Our attitude toward toys has loosened a lot lately. Normally we wouldn't have considered buying an item like this for a three year old. The experience of building it and the smiles it brought were worth so much and we owe that to the considerate and thoughtful management at RideMakerz. Not only did they open the store for us. Not only did the assistant manager engage Henry and play with him on the floor. Not only did they provide a terrific memory and generate smiles for Henry. But they wouldn't accept any payment for it. Thank you RideMakerz and specifically, thank you Jordan. You made Henry's day!
Our family has been the object of so much giving, much of it by family and friends. The generosity of strangers is such a wonderful surprise and reaffirms that there is an awful lot of good in the world too.
By the way, while there are only 7 stores in the country now, there is one in Hagerstown on Garland Groh Blvd near the new Best Buy. If you've got a special little boy in your life, it's definitely worth a visit!
Friday, April 25, 2008
Home Sweet Home
We were released from Hopkins yesterday after an uneventful visit. We are asked similar questions each time regarding Henry's health, and lately (and fortunately) we've nothing to report. He's not quite eating as much as we'd like, but it's ramping up. During our visit yesterday he polished off two bags of his favorite 'orange' potato chips!
The doctors left the room and Henry's first question was, "does that mean we get to go home?" After saying 'Yes', he hopped off the bed and did what we're now calling his 'Wohoo Dance'.
There are lots of pictures and stories from over the recent days. After we get our suitcases put away and the wonder at being home and healthy for a while tapers off a little, I'll post some of them. We've had a really lovely time at St. Casimir's. It's been an invaluable resource and meant that we could conserve our energy for caring instead of traveling. We cannot say enough about the Children's House and The Believe in Tomorrow Foundation. (In fact, if anyone has Sunday free and would like to participate in a fund raiser, they're having a run/walk in Baltimore - see here.)
The doctors left the room and Henry's first question was, "does that mean we get to go home?" After saying 'Yes', he hopped off the bed and did what we're now calling his 'Wohoo Dance'.
There are lots of pictures and stories from over the recent days. After we get our suitcases put away and the wonder at being home and healthy for a while tapers off a little, I'll post some of them. We've had a really lovely time at St. Casimir's. It's been an invaluable resource and meant that we could conserve our energy for caring instead of traveling. We cannot say enough about the Children's House and The Believe in Tomorrow Foundation. (In fact, if anyone has Sunday free and would like to participate in a fund raiser, they're having a run/walk in Baltimore - see here.)
Tuesday, April 22, 2008
Coming Home Soon!
So after only three days and two nights at home since February 15th, Henry will be coming home on Friday.
At his last clinic appointment, we expressed our surprise at Henry's recovery, telling the transplant specialist that we just didn't know what to expect, but that we were really pleased.
His response?
So it seems that Henry has been on the exceptional end of a quick recovery from this last round of chemotherapy. The doctor also said that it's "ridiculously early" to be sending us home, but he sees no reason for us to have to stay nearby longer than the end of the week!
Henry displayed his energetic self in grand fashion yesterday, keeping the adults in the house jumping all day listening to him go on and on about anything and everything. He's turning into such a little man! At one point Tara asked him if he'd like to have his snack at the table or to sit on the floor. "I'd prefer my snack at the table." Prefer? I guess that's what comes from interacting with only adults for the last six months of his life...
Anyway, we're enormously proud of him for his spirit's ability to return to his life as a three year old boy so quickly and flexibly. We are grateful for his body's ability to do the same. And I have to think the healing will only progress faster when we return home.
At his last clinic appointment, we expressed our surprise at Henry's recovery, telling the transplant specialist that we just didn't know what to expect, but that we were really pleased.
His response?
"We know what to expect and we're really surprised."
So it seems that Henry has been on the exceptional end of a quick recovery from this last round of chemotherapy. The doctor also said that it's "ridiculously early" to be sending us home, but he sees no reason for us to have to stay nearby longer than the end of the week!
Henry displayed his energetic self in grand fashion yesterday, keeping the adults in the house jumping all day listening to him go on and on about anything and everything. He's turning into such a little man! At one point Tara asked him if he'd like to have his snack at the table or to sit on the floor. "I'd prefer my snack at the table." Prefer? I guess that's what comes from interacting with only adults for the last six months of his life...
Anyway, we're enormously proud of him for his spirit's ability to return to his life as a three year old boy so quickly and flexibly. We are grateful for his body's ability to do the same. And I have to think the healing will only progress faster when we return home.
Saturday, April 19, 2008
Sunny, Happy Days
I've stolen away to the Safeway grocery store near St. Casimir's to make use of their internet connection. Henry has been doing absolutely terrific right now. He's already eating on his own without the aid of his internal feeding. Occasionally we notice that he's unable to hear a sound here or there, but nothing severe.
His counts are beginning to rebound as expected. His sisters are down for a long weekend with Grandma Linda and he's been having a ball. He's ridden his bike, taken walks, played hide and seek, learned to jump (yes - he's catching air!) and seems to have simply boundless energy. He's not fussing when taking his medicine which, along with flushing his catheter daily, are the only things we have to do now for maintenance.
We make two or three trips per week to the clinic to check his blood levels and give him any blood products he needs, which to date has only been one unit of platelets. None of us would have ever guessed that less than several days out of the hospital he would be running and jumping! He's truly enjoying life right now as are we all. Along with his health, the weather has commensurately improved, spring is in full bloom and warmer days are allowing some outside play.
So for the time being we will forget that our fight is not yet over, that we still must discuss radiation therapy, that this isn't yet a 'cure', that his prognosis is still difficult to realize despite his current mood and behavior. For now we will bask in our sunny, warm, happy days and be ever so grateful for them.
His counts are beginning to rebound as expected. His sisters are down for a long weekend with Grandma Linda and he's been having a ball. He's ridden his bike, taken walks, played hide and seek, learned to jump (yes - he's catching air!) and seems to have simply boundless energy. He's not fussing when taking his medicine which, along with flushing his catheter daily, are the only things we have to do now for maintenance.
We make two or three trips per week to the clinic to check his blood levels and give him any blood products he needs, which to date has only been one unit of platelets. None of us would have ever guessed that less than several days out of the hospital he would be running and jumping! He's truly enjoying life right now as are we all. Along with his health, the weather has commensurately improved, spring is in full bloom and warmer days are allowing some outside play.
So for the time being we will forget that our fight is not yet over, that we still must discuss radiation therapy, that this isn't yet a 'cure', that his prognosis is still difficult to realize despite his current mood and behavior. For now we will bask in our sunny, warm, happy days and be ever so grateful for them.
Friday, March 21, 2008
All Is Well
A quick post at the end of a day of tests. We've had some worried callers due to a lack of posting recently. Rest assured, it's only because our limited internet access at our temporary residence.
Henry had a CT scan of his sinuses, a chest x-ray and an MRI today. They all ran really late and it made for a long day of not eating for him. We expect to hear the results tomorrow. These are routine tests and we hope to hear similar results as the last battery considering the recent chemotherapy has been of a stronger sort.
Thank you for your continued calls, care packages and notes of encouragement. We'll update more thoroughly soon.
Henry had a CT scan of his sinuses, a chest x-ray and an MRI today. They all ran really late and it made for a long day of not eating for him. We expect to hear the results tomorrow. These are routine tests and we hope to hear similar results as the last battery considering the recent chemotherapy has been of a stronger sort.
Thank you for your continued calls, care packages and notes of encouragement. We'll update more thoroughly soon.
Monday, March 17, 2008
Chik - a - lay
Mealtime has been stressful for Henry lately. He sees the rest of us sitting down to eat, and knows that he's supposed to want to eat, but he really doesn't. He generally is able to come up with something that sounds good, for which we will go to the end of the earth to procure. He looks at it with great enthusiasm, but the second it hits his tongue, he spits it out. Taste buds take quite a beating from chemo, so nothing tastes quite right. The worst part about it is the look of betrayal on his face when he doesn't taste what he expected to taste - like someone secretly poisoned the pancakes we just rushed to make.
So far, he's been drinking about 6 ounces of juice per day, sips of milk (heavily fortified with half and half to boost the calories), a few bites of vanilla ice cream, and Nerds (a very tart candy). This morning he branched out to orange TicTacs. (Great, the one and a half calorie breath mint.)
Bryan brought home some ice cream cones from the grocery store today, to satisfy another craving Henry's had. We expected him to to take an obligatory bite and be done with it. To our surprise, he ate all of the ice cream and most of the cone. He even asked for a second one, but by the time it was ready, he was no longer interested. Still, it was the most that he'd eaten yet!
This evening we had some errands to run, and Henry requested Chik-a-lay (Chik-Fil-A to those of you who need translation.) This is his favorite fast food, and a regular stopping point during our commutes to Baltimore. He asked for his usual, and took a very big first bite. I expected it to come right back out, but instead he grinned and gave me a thumb's up sign and kept right on chewing. He finished almost a full serving. For dessert tonight he had another ice cream cone.
It's great to see him eat. He gets all the nutrition he needs through his TPN, but it's troubling as a parent to see a child not eat. For now we'll keep him on it, but if his appetite continues to pick up, we may cut it in half. We know he'll stop eating again during the next chemo, but we hope he'll be able to enjoy one of life's greatest pleasure for a few days first.
So far, he's been drinking about 6 ounces of juice per day, sips of milk (heavily fortified with half and half to boost the calories), a few bites of vanilla ice cream, and Nerds (a very tart candy). This morning he branched out to orange TicTacs. (Great, the one and a half calorie breath mint.)
Bryan brought home some ice cream cones from the grocery store today, to satisfy another craving Henry's had. We expected him to to take an obligatory bite and be done with it. To our surprise, he ate all of the ice cream and most of the cone. He even asked for a second one, but by the time it was ready, he was no longer interested. Still, it was the most that he'd eaten yet!
This evening we had some errands to run, and Henry requested Chik-a-lay (Chik-Fil-A to those of you who need translation.) This is his favorite fast food, and a regular stopping point during our commutes to Baltimore. He asked for his usual, and took a very big first bite. I expected it to come right back out, but instead he grinned and gave me a thumb's up sign and kept right on chewing. He finished almost a full serving. For dessert tonight he had another ice cream cone.
It's great to see him eat. He gets all the nutrition he needs through his TPN, but it's troubling as a parent to see a child not eat. For now we'll keep him on it, but if his appetite continues to pick up, we may cut it in half. We know he'll stop eating again during the next chemo, but we hope he'll be able to enjoy one of life's greatest pleasure for a few days first.
Saturday, March 15, 2008
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.
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
Thursday, March 13, 2008
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.
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.
Wednesday, March 12, 2008
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.
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.
Tuesday, March 11, 2008
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.
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.
Monday, March 10, 2008
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.
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.
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