Lucas took Owen home after visiting Henry at the hospital. At night, the moon was beautiful. Owen and Lucas were outside, Owen's arms were reaching up.
Lucas: Owen, what are you doing?
Owen: bring moon to brother.
Sweet kid
Friday, February 18, 2011
Wednesday, February 16, 2011
Today
We are trying to get into a routine... and ever evolving, crazy routine. Part of the routine is getting Owen to the hospital everyday. Start acclimating him to the fact that we are here for a long while. I won't lie, he's having a tough time, which is normal. I'm told by the fantastic child life program that this is normal, and he will get used to it. We've set up a drawer in our room just for Owen, and plan on putting fun little things in it every day.
We also have a pad to play on the floor with Henry. Some floor time is always fun.
We've acquired three balloons: an octopus, a caterpillar and a turtle. Owen wore all three today. I'm surprised he didn't float away!
Upset Owen... octopus wouldn't stay behind him. When he got upset, we started a stroller ride to find lunch. All was better with some fruit and a grilled cheese sandwich.
The steroids are making Henry so BIG! Look how easily he can pick up that car! 
We are on day five of chemo. As this is just high dose steroids, he is still pretty happy most the time. The "big guns" start on Saturday. I'm planning on a sick, tired, pukey baby real soon...
We also have a pad to play on the floor with Henry. Some floor time is always fun.
We've acquired three balloons: an octopus, a caterpillar and a turtle. Owen wore all three today. I'm surprised he didn't float away!
Upset Owen... octopus wouldn't stay behind him. When he got upset, we started a stroller ride to find lunch. All was better with some fruit and a grilled cheese sandwich.
The steroids are making Henry so BIG! Look how easily he can pick up that car! 
We are on day five of chemo. As this is just high dose steroids, he is still pretty happy most the time. The "big guns" start on Saturday. I'm planning on a sick, tired, pukey baby real soon... Good news: his blood counts are coming down nicely. This makes the oncologists, and us, very happy...
Bad news: we are only on day five of a 365 day journey.
Pictures
Finally, I'm home, on a computer... I can upload some picture of Henry. We didn't take any while he had the breathing tube in... and for that I think I'm grateful. He looks pathetic enough without any extra tubes.
It's amazing how some blood and steroids can help a kid out. He's more playful now than he has been in a month!
"where's Henry" is his new favorite game. Since his left arm has an IV in it, and is all bandaged up, he has adapted to a one handed approach. (these are still in PICU)
Playing with toys. He loves to throw toys on the floor, which means endless cleaning with disinfectant wipes for us.
This picture looks like a self-portrait. When did he learn to use a camera!
Sleeping baby foot.
"Oy, what have I gotten myself into?!"
When we moved out to the pediatric unit, we could wander the halls in a wagon. We will only be able to do this a few more days. When his white blood cells decrease a little bit more, he won't have any ability to fight off infection, we will we be quarantined to our room... to keep all the germs away. But before that happens, we will stroll along. Owen rode with him for a while, then decided it was more fun to help push the wagon.
Family of four
I love this picture. Owen is "smiling" his smile, and Henry is just in love with Owen.
Henry is such a trooper. So happy and playful (again, blood and steroids)... but it's not always fun. Sometimes he is inconsolable for a little while. We call the "roid rages". The nurses say imaging a terrible twos time ten!
He cycles pretty quick. And quite often, food helps. He's eating the hospital out of all their vanilla pudding! (steroids)
And then more tears. It doesn't help that he's made 10 teeth since the start of the year.
"where's Henry"
There he his.
It's amazing how some blood and steroids can help a kid out. He's more playful now than he has been in a month!
"where's Henry" is his new favorite game. Since his left arm has an IV in it, and is all bandaged up, he has adapted to a one handed approach. (these are still in PICU)
Playing with toys. He loves to throw toys on the floor, which means endless cleaning with disinfectant wipes for us.
This picture looks like a self-portrait. When did he learn to use a camera!
Sleeping baby foot.
"Oy, what have I gotten myself into?!"
When we moved out to the pediatric unit, we could wander the halls in a wagon. We will only be able to do this a few more days. When his white blood cells decrease a little bit more, he won't have any ability to fight off infection, we will we be quarantined to our room... to keep all the germs away. But before that happens, we will stroll along. Owen rode with him for a while, then decided it was more fun to help push the wagon.
Family of four
I love this picture. Owen is "smiling" his smile, and Henry is just in love with Owen.
Henry is such a trooper. So happy and playful (again, blood and steroids)... but it's not always fun. Sometimes he is inconsolable for a little while. We call the "roid rages". The nurses say imaging a terrible twos time ten!
He cycles pretty quick. And quite often, food helps. He's eating the hospital out of all their vanilla pudding! (steroids)
And then more tears. It doesn't help that he's made 10 teeth since the start of the year.
"where's Henry"
There he his.
Henry's First Birthday
One week ago today, we celebrated Henry's first birthday. We celebrated a crazy year, and a million milestones. We started the day with a trip to Munchkin Playland. Birthday lattes for the parents, and playtime for the boys.
Sailing away together.
"where's Owen?"
Such a beautiful child.
Me and the birthday boy.
Sweet kisses by daddy. (looking back, Henry really WAS pale...)
Go Beavs!
"there's Owen!" Such a little model.
After Munchkin, we went to play with Page and Presley. Henry was a Bee. Owen was a butterfly with a tiara!
Owen helped open the presents from Grandma and Grandpa. I think Owen thought it was a pretty good day... lots of new toys. Henry was happy with the wrapping paper and envelopes.
We had dinner at the Spaghetti Factory with mom and dad.
It was such a wonderful day, such a milestone. We were planning on having his birthday party on Sunday the 13th, instead, we were in the hospital... at least we got to celebrate his birthday proper... and believe me his second birthday, will be the biggest bash of the century!
Sailing away together.
"where's Owen?"
Such a beautiful child.
Me and the birthday boy.
Sweet kisses by daddy. (looking back, Henry really WAS pale...)
Go Beavs!
"there's Owen!" Such a little model.
After Munchkin, we went to play with Page and Presley. Henry was a Bee. Owen was a butterfly with a tiara!
Owen helped open the presents from Grandma and Grandpa. I think Owen thought it was a pretty good day... lots of new toys. Henry was happy with the wrapping paper and envelopes.
We had dinner at the Spaghetti Factory with mom and dad.
It was such a wonderful day, such a milestone. We were planning on having his birthday party on Sunday the 13th, instead, we were in the hospital... at least we got to celebrate his birthday proper... and believe me his second birthday, will be the biggest bash of the century!
Sunday, February 13, 2011
A long journey has started
OK, while I can give quick updates on facebook, I can give details on the blog. So, here's what we've learned in the past two days. Henry has infant acute lymphocytic leukemia (ALL). He got his first dose of chemotherapy into his spinal column on Friday, but officially started his first round of chemotherapy Saturday the 12th at midnight. The first round of chemo is about 33 days long, all of it in the hospital. Then, we will take a couple day break, and start it all over again. We will be in the hospital, pretty much continuously for the next year. If Henry is healthy enough, hopefully between each round of chemo we will be able to go home for a few days, but Emanuel Children's Hospital will be our primary home away from home.
As I know everyone will look this up on-line, I'll tell you... his five year prognosis is about 60%. Though as our oncologist said, we only care about Henry... and for him it's 100% or nothing. He does have a few things going for him. 1. He's older. Infant leukemia is from 0-12 months. While he technically is 12 months and a few days, we know that he had this for a while before his birthday, so we are being aggressive and treating it as infant ALL. Two month olds with this diagnosis have only a 10-20% chance. 2. His blood counts are already responding to treatment. While this isn't a tell-tale sign of greatness, it does look really good.
He will need blood and platelets often, as chemotherapy not only kills the bad blood cells but the good ones too. He will get really really sick. Become very susceptible to infections. Even a diaper rash is going to be tough to treat.
This is a very long road. And currently I can only see a day or two ahead. We are currently giving some blood and platelets. Then we will move out of ICU and onto the pediatric floor, our new abode. Today he was feeling better enough to play for a while. Laugh, play peek-a-boo... be Henry.
We are so lucky that we have friends and family from around the entire USA thinking about us, sending us prayers and well wishes. So many people offering up help, which we will need... and lots of it. But right now, we have no idea what help we do need. As the days go by, I'm sure it will become more obvious.
Lucas and I have cried more tears in the past 72 hours than we have our enitre lives... but though it, we can laugh, we can have hope. We are so scared, but we have each other, we have Owen and Henry, and so many friends and family to support us.
As I know everyone will look this up on-line, I'll tell you... his five year prognosis is about 60%. Though as our oncologist said, we only care about Henry... and for him it's 100% or nothing. He does have a few things going for him. 1. He's older. Infant leukemia is from 0-12 months. While he technically is 12 months and a few days, we know that he had this for a while before his birthday, so we are being aggressive and treating it as infant ALL. Two month olds with this diagnosis have only a 10-20% chance. 2. His blood counts are already responding to treatment. While this isn't a tell-tale sign of greatness, it does look really good.
He will need blood and platelets often, as chemotherapy not only kills the bad blood cells but the good ones too. He will get really really sick. Become very susceptible to infections. Even a diaper rash is going to be tough to treat.
This is a very long road. And currently I can only see a day or two ahead. We are currently giving some blood and platelets. Then we will move out of ICU and onto the pediatric floor, our new abode. Today he was feeling better enough to play for a while. Laugh, play peek-a-boo... be Henry.
We are so lucky that we have friends and family from around the entire USA thinking about us, sending us prayers and well wishes. So many people offering up help, which we will need... and lots of it. But right now, we have no idea what help we do need. As the days go by, I'm sure it will become more obvious.
Lucas and I have cried more tears in the past 72 hours than we have our enitre lives... but though it, we can laugh, we can have hope. We are so scared, but we have each other, we have Owen and Henry, and so many friends and family to support us.
Friday, February 11, 2011
Oh Henry, here we go...
I have pictures to post of Henry's first birthday. I have stories to tell, memories to treasure, and updates that will make it to this blog eventually. However, life hasn't made it too easy to get this blog up-to-date.
Currently, as I type, I am standing in a pediatric intensive care unit (PICU). A year ago it was NICU, now PICU. Same kid... very different diagnosis. Henry was diagnosed with leukemia today. It seems that the last year was just a warm-up to a whole new level of worry/stress.
Let's back up. Yesterday, I took Henry for his routine one year check-up with our pediatrician. We had noticed for about a week, that he had been bruising easier. Yesterday morning, we noticed pettichaie (small red spots) over his arms and legs. As our worry grew, we hoped it was a nutrition issue, since the past month he's been a bit challenging to feed after his palate surgery. Henry's liver was a enlarged, and Dr. Snyder was "quite worried". He sent us for labs. An hour later, at 1205, we got the phone call, "Henry has leukemia". Amazing how three words can forever change your life.
As I cried, Owen brought me a toy, gave me a hug and said, "mommy OK?" Such a sweet boy.
As soon as Bob got to the house to watch Owen, Lucas and I took Henry to Emanuel Children's Hospital. His white blood cell count was 301,000 (normal is less than 10,000). His red blood counts were critically low. While leukemia is a huge worry... the biggest worry when we got here was that his blood was too thick with WBC that he may stroke or have organ failure. So, they put in a breathing tube, so we can keep him still, placed a large line in his neck so we could pherese (fur-ese) his blood. (continually take out his blood, spin it, remove the white blood cells and put back his blood. a process that takes about four hours). We are also giving him red blood cells to help fix his anemia.
So, here we sit. The phereses worked. His WBC are now "only" 52,000. Still crazy high, but not so high to worry about strokes. Today will will get labs to tell us what type of leukemia he has. Two different types, two very different courses of treatment. We will do more phereses. (his WBC will continue to climb until we start chemotherapy). We will get an ultrasound of his heart and liver. Hopefully place a larger IV line to draw labs/give chemo. Do more labs/tests/pokes and prods, and then hopefully remove the breathing tube.
Hopefully by tomorrow night we have an official diagnosis and start figuring out a treatment plan. Hopefully start chemotherapy this weekend.
So, here we stand. It's 0345, and I'm in his room... staring at the most precious of kids. Such an amazingly strong, sweet wonderful baby boy. I just want to hold him and tell him everything will be OK... but I can't. I can only stroke his little arms and whisper to him that I love him very much. That he is so loved, so treasured.
We will now more tomorrow...have more questions tomorrow. We are so lucky to have so many friends and family to support us all. As Lucas says, this is a marathon and not a sprint. We have a long road ahead of us.
I will try to update as I can.
Currently, as I type, I am standing in a pediatric intensive care unit (PICU). A year ago it was NICU, now PICU. Same kid... very different diagnosis. Henry was diagnosed with leukemia today. It seems that the last year was just a warm-up to a whole new level of worry/stress.
Let's back up. Yesterday, I took Henry for his routine one year check-up with our pediatrician. We had noticed for about a week, that he had been bruising easier. Yesterday morning, we noticed pettichaie (small red spots) over his arms and legs. As our worry grew, we hoped it was a nutrition issue, since the past month he's been a bit challenging to feed after his palate surgery. Henry's liver was a enlarged, and Dr. Snyder was "quite worried". He sent us for labs. An hour later, at 1205, we got the phone call, "Henry has leukemia". Amazing how three words can forever change your life.
As I cried, Owen brought me a toy, gave me a hug and said, "mommy OK?" Such a sweet boy.
As soon as Bob got to the house to watch Owen, Lucas and I took Henry to Emanuel Children's Hospital. His white blood cell count was 301,000 (normal is less than 10,000). His red blood counts were critically low. While leukemia is a huge worry... the biggest worry when we got here was that his blood was too thick with WBC that he may stroke or have organ failure. So, they put in a breathing tube, so we can keep him still, placed a large line in his neck so we could pherese (fur-ese) his blood. (continually take out his blood, spin it, remove the white blood cells and put back his blood. a process that takes about four hours). We are also giving him red blood cells to help fix his anemia.
So, here we sit. The phereses worked. His WBC are now "only" 52,000. Still crazy high, but not so high to worry about strokes. Today will will get labs to tell us what type of leukemia he has. Two different types, two very different courses of treatment. We will do more phereses. (his WBC will continue to climb until we start chemotherapy). We will get an ultrasound of his heart and liver. Hopefully place a larger IV line to draw labs/give chemo. Do more labs/tests/pokes and prods, and then hopefully remove the breathing tube.
Hopefully by tomorrow night we have an official diagnosis and start figuring out a treatment plan. Hopefully start chemotherapy this weekend.
So, here we stand. It's 0345, and I'm in his room... staring at the most precious of kids. Such an amazingly strong, sweet wonderful baby boy. I just want to hold him and tell him everything will be OK... but I can't. I can only stroke his little arms and whisper to him that I love him very much. That he is so loved, so treasured.
We will now more tomorrow...have more questions tomorrow. We are so lucky to have so many friends and family to support us all. As Lucas says, this is a marathon and not a sprint. We have a long road ahead of us.
I will try to update as I can.
Tuesday, February 1, 2011
Freedom
After 28 days, Henry is restraint free!! He is so happy to have his arms back. First thing to do: try to put a shoe in his mouth. While he is happy to put things in his mouth, we are both a little paranoid to have anything in his mouth. (we may have a little PTSD) 
Next, taste his hands.
Followed by attempting to use a sippy cup.
Then, look pretty darn cute.
Finally, take some time to play with Owen.
Next, taste his hands.
Followed by attempting to use a sippy cup.
Then, look pretty darn cute.
Finally, take some time to play with Owen.
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