We’re going to be printing out this blog and making a book for Tessa (and for us, I guess). Tessa doesn’t really understand all that has happened to her, but we would like her to know and understand a little better as she gets older. We wanted to invite you to be a part of this remembrance. If you are willing, would you please add your comments or thoughts to this final post? Anything you add will be printed and added to the end of the book we’ll put together. As Tessa grows older, she’ll be able to look back on this time and understand it better. She’ll get a better sense of the rare and beautiful community that surrounded her, prayed for her, and walked through this with her. We’ll leave the blog up and open for comments through the end of May, and then in June we’ll print everything out and make the book.
Thank you for your interest in Tessa, in our family, and for your constant intercession before the Lord on our behalf. We are so appreciative of all the cards, emails and phone calls. Thanks to those of you who sent gifts, stuffed animals, activities for the hospital, and stickers. Thanks to all who remembered Justin through this, sending him little gifts to help him remember that he is loved, too. We look forward to your comments, as we turn the page from this intense season and start the next chapter of God’s journey for our family. We love all of you.
In Jesus’ name,
and for His glory alone,
Tim and Joanna
Justin, and Tessa.
Friday, May 4, 2007
Thursday, May 3, 2007
The End of this Chapter
A number of you have been asking how Tess has been since we’ve come home from the hospital. We had forgotten how much less time is available when we’re actually at home caring for our own children. But, reading the last post over again, we kind of left things hanging. So this post closes things up for this blog.
Tess is doing great! She guards her left side when she runs, but she’s running around without any medication. She laughs and plays and dances and sings (and sings and sings). She hurt herself a bit when she fell one day, but she fell because she was jumping on a mattress! I’ve decided to give her the nickname Logan.
Tessa recovering on the couch; A sister's love, happy to be reunited with her brother.
As far as the labs and tests on her tumor are concerned, they have all come back favorable: the MiCN, the histology sample, the genetic markers all came back indicating that she should have no further problems. We go back in on Tuesday for the surgery follow-up appointment to discuss things with Dr. Shamberger.
Looking to the future, Tess will need repeated MRIs over the next few months just to confirm that the tumor is not regrowing. So, she’ll have to get a “poke” (her word for IV) and be sedated for these tests each time. We’ll have to go in at one month, three months, six months, and then again at a year. After two years, we’ll just be going in to touch base with the oncologists at Dana Farber on an annual basis - Tessa is a Jimmy Fund kid for life.
So we asked the oncologist, Dr. Diller, point blank: was this cancer? In all the chaos, we had never been given a straight answer on this question. She said that the tumor was a ganglioneuroblastoma (mostly benign) with pockets of neuroblastoma (more malignant) tissue throughout the tumor. So if cancer is defined as a tumor caused by abnormal and uncontrolled cell growth and division, then yes. But if it is defined as a tumor with the potential to metastasize throughout the body, then one might not call it “cancer” per se. She did say that if we are asked in the future if Tess has any history of cancer, we’re to answer “yes” and to call it a ganglioneuroblastoma. So we still have no idea. But we do know that Tessa’s clump is gone, baby. It’s gone.
Joanna’s dad was with us for the last week, and my mother has been here for six weeks now! It seems like she just got here yesterday. But my dad showed up from Florida last night to take her home, and all three left this morning. So we’re on our own. The house seems quieter - a little empty, actually. But with an empty house comes the possibility of a life returning to normal. Whatever normal is. If normal is ever possible after something like this. Is normal even a goal worth pursuing? We face each day now with a renewed appreciation for and awareness of how much we need God’s providential and sustaining grace, moment by moment. I don’t want to go back to our state of taking-God-for-granted, taking life for granted. In an email conversation with a friend, these words were written to us - capturing the heart of where our journey goes from here:
“Day by day. Life for you and for Tessa will never be the same. That's okay. That's not meant to be discouraging. But it is meant to be realistic. You will need God's grace and Tessa will need God's grace to live day by day after this surgery... and you will remember that what has happened once might happen again. This will not be fear or anxiety. But it may be a sense of vulnerability and it will likely make you utterly dependent on God. Day by day. And this is what life should be like - but often, usually, isn't. Whenever you see the scar, you will be thankful to God for His mercy and provision and for His sustaining grace. Day by day. And sometimes you'll want to get a prominently visible tattoo to externally remind people of what you've been through and what you see in the mirror each day... Our true, real, position before God becomes much clearer. And that's okay. Whether we realize it or not we are daily dependent on His sustenance for our being anyway.”
Tessa on a swing at Stage Fort Park; Posing for the camera.
Tess is doing great! She guards her left side when she runs, but she’s running around without any medication. She laughs and plays and dances and sings (and sings and sings). She hurt herself a bit when she fell one day, but she fell because she was jumping on a mattress! I’ve decided to give her the nickname Logan.
Tessa recovering on the couch; A sister's love, happy to be reunited with her brother.
As far as the labs and tests on her tumor are concerned, they have all come back favorable: the MiCN, the histology sample, the genetic markers all came back indicating that she should have no further problems. We go back in on Tuesday for the surgery follow-up appointment to discuss things with Dr. Shamberger.
Looking to the future, Tess will need repeated MRIs over the next few months just to confirm that the tumor is not regrowing. So, she’ll have to get a “poke” (her word for IV) and be sedated for these tests each time. We’ll have to go in at one month, three months, six months, and then again at a year. After two years, we’ll just be going in to touch base with the oncologists at Dana Farber on an annual basis - Tessa is a Jimmy Fund kid for life.
So we asked the oncologist, Dr. Diller, point blank: was this cancer? In all the chaos, we had never been given a straight answer on this question. She said that the tumor was a ganglioneuroblastoma (mostly benign) with pockets of neuroblastoma (more malignant) tissue throughout the tumor. So if cancer is defined as a tumor caused by abnormal and uncontrolled cell growth and division, then yes. But if it is defined as a tumor with the potential to metastasize throughout the body, then one might not call it “cancer” per se. She did say that if we are asked in the future if Tess has any history of cancer, we’re to answer “yes” and to call it a ganglioneuroblastoma. So we still have no idea. But we do know that Tessa’s clump is gone, baby. It’s gone.
Joanna’s dad was with us for the last week, and my mother has been here for six weeks now! It seems like she just got here yesterday. But my dad showed up from Florida last night to take her home, and all three left this morning. So we’re on our own. The house seems quieter - a little empty, actually. But with an empty house comes the possibility of a life returning to normal. Whatever normal is. If normal is ever possible after something like this. Is normal even a goal worth pursuing? We face each day now with a renewed appreciation for and awareness of how much we need God’s providential and sustaining grace, moment by moment. I don’t want to go back to our state of taking-God-for-granted, taking life for granted. In an email conversation with a friend, these words were written to us - capturing the heart of where our journey goes from here:
“Day by day. Life for you and for Tessa will never be the same. That's okay. That's not meant to be discouraging. But it is meant to be realistic. You will need God's grace and Tessa will need God's grace to live day by day after this surgery... and you will remember that what has happened once might happen again. This will not be fear or anxiety. But it may be a sense of vulnerability and it will likely make you utterly dependent on God. Day by day. And this is what life should be like - but often, usually, isn't. Whenever you see the scar, you will be thankful to God for His mercy and provision and for His sustaining grace. Day by day. And sometimes you'll want to get a prominently visible tattoo to externally remind people of what you've been through and what you see in the mirror each day... Our true, real, position before God becomes much clearer. And that's okay. Whether we realize it or not we are daily dependent on His sustenance for our being anyway.”
Tessa on a swing at Stage Fort Park; Posing for the camera.
Friday, April 27, 2007
First Steps and Last Steps
Today was long, with a few highlights worth mentioning here. Tessa had her catheter taken out in the middle of the night... and she didn't even wake up. In fact, neither did I. I think Joanna did, but I'm not even sure about that. Hmmm. So for most of the day, Tess only had one tube left: the IV access in her foot. She had an EKG in the middle of the morning, and a cardiologist came in - a dry, entertaining man whose mission was to come up with an explanation for Tessa's "heart pause" during surgery. He failed. We were thrilled. He gave her a clear report card and clearance to go home. The surgical residents came by and also gave her the green light (although Tessa attempted to protest, requesting to stay for "several more days"). So all we were waiting for was for Tess to... um... void. Since the catheter had come out, she needed to prove her ability to employ all of her bodily functions before the nurses gave the final green light. So we pushed fluids. And we waited. And we tried over and over. And that's how Tessa came to take her first steps since the surgery - baby steps to the potty and back.
Tess getting her EKG; Tess' first steps to the potty
While encouraging her body to process the fluids, we snuggled a bit in bed, we went to the play room and played trains. Tess is responding really well to the oral meds - they're keeping her pain well under control. Walking with her, Jo and I each holding a hand, was precious.
Tess and dad waiting for bodily functions; The playroom on 10 South
Finally, 255 cc's later, we were cleared for takeoff. Our nurse, Wendy, wisked that last IV access out of her foot. Jo and I had a chance to talk to the oncologist, Dr. Diller. This is the one Tessa tried to fire. During one visit, we told Tess that her clump doctor was here. She retorted, "I don't need a clump doctor. I don't have a clump anymore." But we decided to maintain the relationship with her anyways. So we had a chance to say thank you and good bye to Dr. Diller, and to Wendy. Then, we took our last steps as a patient of Children's Hopsital, and came home.
Saying goodbye to Dr. Diller; Last steps at Children's
Tess getting her EKG; Tess' first steps to the potty
While encouraging her body to process the fluids, we snuggled a bit in bed, we went to the play room and played trains. Tess is responding really well to the oral meds - they're keeping her pain well under control. Walking with her, Jo and I each holding a hand, was precious.
Tess and dad waiting for bodily functions; The playroom on 10 South
Finally, 255 cc's later, we were cleared for takeoff. Our nurse, Wendy, wisked that last IV access out of her foot. Jo and I had a chance to talk to the oncologist, Dr. Diller. This is the one Tessa tried to fire. During one visit, we told Tess that her clump doctor was here. She retorted, "I don't need a clump doctor. I don't have a clump anymore." But we decided to maintain the relationship with her anyways. So we had a chance to say thank you and good bye to Dr. Diller, and to Wendy. Then, we took our last steps as a patient of Children's Hopsital, and came home.
Saying goodbye to Dr. Diller; Last steps at Children's
Thursday, April 26, 2007
That Girl Can Dance
Tess is definitely on the mend. They gave her a final chest x-ray this morning, and it was Tessa’s hardest yet. But the x-ray showed that the pneumothorax has resolved itself. So Tess is in the clear on that. They stopped the epidural pain meds, and switched Tess over to oral medication. She tolerated the taste, so that will make it so much easier when we go home.
She was still connected to the epidural tube for most of the day. But she was better enough to get up and have a ‘first dance’ with her mom and dad, as the songs of Bebo Norman filled our hospital room. She cautiously curled up in my arms, put her head down on my shoulder, and allowed me to dance her slowly in circles, while Jo circled together with us keeping all three of us from getting wound up in the tubes and wires. We cried for the first time since all this began.
Tessa coloring, and a picture she drew of herself "without her clump," the second in a series of self-portraits. At least she didn't draw her dad again. He's not sure his self-esteem could have handled that.
It was a big day for taking tubes out. They have pulled the epidural out of her back. . She had an IV access port taken out of her hand. She is off the constant monitoring of heart rate, respiration rate and oxygen saturation, so those wires are gone too. So she only has two “tubes” left to come out: an IV access in her foot, and the Foley bag and catheter.
Which means we’re close to coming home.
Tess is actually happy and playful. She’s feeling enough like herself to get stubborn and start giving a little attitude to her mom and dad, too. I think she’s begun to figure out that people here will do absolutely anything to ensure a positive experience for her. So she’s started in with the “I’m-so-cute-and-I’ll-manipulate-you-out-of-your-retirement-savings-if-you-let-me” tricks. We just put her to bed for the night… or at least until the next nurse or doctor comes crashing into the room… or until she manipulates us into coming over to play and snuggle with her. They're both equally likely.
She was still connected to the epidural tube for most of the day. But she was better enough to get up and have a ‘first dance’ with her mom and dad, as the songs of Bebo Norman filled our hospital room. She cautiously curled up in my arms, put her head down on my shoulder, and allowed me to dance her slowly in circles, while Jo circled together with us keeping all three of us from getting wound up in the tubes and wires. We cried for the first time since all this began.
Tessa coloring, and a picture she drew of herself "without her clump," the second in a series of self-portraits. At least she didn't draw her dad again. He's not sure his self-esteem could have handled that.
It was a big day for taking tubes out. They have pulled the epidural out of her back. . She had an IV access port taken out of her hand. She is off the constant monitoring of heart rate, respiration rate and oxygen saturation, so those wires are gone too. So she only has two “tubes” left to come out: an IV access in her foot, and the Foley bag and catheter.
Which means we’re close to coming home.
Tess is actually happy and playful. She’s feeling enough like herself to get stubborn and start giving a little attitude to her mom and dad, too. I think she’s begun to figure out that people here will do absolutely anything to ensure a positive experience for her. So she’s started in with the “I’m-so-cute-and-I’ll-manipulate-you-out-of-your-retirement-savings-if-you-let-me” tricks. We just put her to bed for the night… or at least until the next nurse or doctor comes crashing into the room… or until she manipulates us into coming over to play and snuggle with her. They're both equally likely.
Another Day, Another Tube Taken Out of Our Daughter
Yesterday was a long day but a good day. Tessa did some more go-karting - we’ve found it hard to break the world land speed record due to the number of tubes, cables, and wires coming out of her and off her, dragging the IV and epidural pole around with us. But I’m confident we’ll go down in history - if not as the fastest go-kart champion, then at least as the cutest. Tessa is starting to feel better, which manifests itself in being adorably articulate as she expresses herself to the staff here. She also spent some time writing, coloring and placing stickers in "my field journal, daddy." She had a lot of x-rays (which are painful… or at least scary for her; sometimes it’s hard to tell what the source of the tears are). But she did great. Our nurses, Mike and Mike, were great, too.
They took out her chest tube in the afternoon, which almost made me pass out. So we won’t relay any of the details here. The x-rays, and listening to her chest, revealed a minor concern: a small pneumothorax (a bubble of air trapped between her lung and her chest wall). While unexpected, they’ll continue to watch it via ongoing periodic x-rays. It is thought that it is something that will resolve itself.
Emily Prince brought Justin down for a visit last night. He accidentally locked himself in her car while I was unloading some gifts for Tessa - and after Emily had already left taking her keys with her. Justin went ballistic. We eventually found the automatic unlock button, and opened the door, which then set off the car alarm - amplified by the cavernous concrete of the parking garage. Not good for Justin’s nerves. Or mine, for that matter. But eventually, we got him up to the room to see Tess and mom.
It was a good visit, and they were very cute. Justin helped Tessa be brave for another x-ray, holding her hand until he and mom had to leave the room to avoid the radiation. Then, we all settled in for a few minutes of Cinderella together.
I took Justin home last night, while Jo stayed at the hospital. A better night, so we’ll see how today goes. Tessa woke up with sudden pain a number of times, but seems to be doing better now. She looks and sounds great this morning. So we’re hopeful for a good day. She’s giving her Tessa attitude to anyone who will pay her any mind - which is endearing, a little embarassing at her shameless attention-getting demeanor, and yet, she’s our little Tess. What is a “wrapped-around-her-little-finger”ed dad to do?
Tess loving her itchyness meds
They took out her chest tube in the afternoon, which almost made me pass out. So we won’t relay any of the details here. The x-rays, and listening to her chest, revealed a minor concern: a small pneumothorax (a bubble of air trapped between her lung and her chest wall). While unexpected, they’ll continue to watch it via ongoing periodic x-rays. It is thought that it is something that will resolve itself.
Emily Prince brought Justin down for a visit last night. He accidentally locked himself in her car while I was unloading some gifts for Tessa - and after Emily had already left taking her keys with her. Justin went ballistic. We eventually found the automatic unlock button, and opened the door, which then set off the car alarm - amplified by the cavernous concrete of the parking garage. Not good for Justin’s nerves. Or mine, for that matter. But eventually, we got him up to the room to see Tess and mom.
It was a good visit, and they were very cute. Justin helped Tessa be brave for another x-ray, holding her hand until he and mom had to leave the room to avoid the radiation. Then, we all settled in for a few minutes of Cinderella together.
I took Justin home last night, while Jo stayed at the hospital. A better night, so we’ll see how today goes. Tessa woke up with sudden pain a number of times, but seems to be doing better now. She looks and sounds great this morning. So we’re hopeful for a good day. She’s giving her Tessa attitude to anyone who will pay her any mind - which is endearing, a little embarassing at her shameless attention-getting demeanor, and yet, she’s our little Tess. What is a “wrapped-around-her-little-finger”ed dad to do?
Tess loving her itchyness meds
Wednesday, April 25, 2007
A Much Better Night
That was better. Both Jo and I stayed over at the hospital last night, and both Tessa's pain and her itchyness were kept under control. They're thinking she can try to get out of bed today - they've ordered her some kind of go-kart, and they've measured the distance around the floor... it takes 5 laps to make the 1/4 mile. We're going to set the new world record. A chest x-ray, some solid food, and then they might take out her chest tube today!
I finally got my adapter to get the pictures from our big camera (not my Treo). Here's a few shots from the last few days... in this order: (1) Tess immediately before surgery in the pre-op holding area; (2) Tess and her Dad, all gowned and ready to head into the OR; (3) The helipad right outside our window... Justin, you're going to love seeing this helicopter take off and land! (4) Sunrise over Boston out our window.
I finally got my adapter to get the pictures from our big camera (not my Treo). Here's a few shots from the last few days... in this order: (1) Tess immediately before surgery in the pre-op holding area; (2) Tess and her Dad, all gowned and ready to head into the OR; (3) The helipad right outside our window... Justin, you're going to love seeing this helicopter take off and land! (4) Sunrise over Boston out our window.
Tuesday, April 24, 2007
We're Out of the ICU
It’s Tuesday evening and we’re just waking up from a much needed nap… all of us. Late last night, I went home to see Justin and take him to preschool this morning. He had a tremendous day, which included an adventure with Jonathan Knock to Agassiz Rock where they saw turtles (they were mating, dad) and where Jonathan caught a snake and let Justin touch it. He was so excited, even just retelling it. He had an amazing day.
But Tess and Joanna, on the other hand, were both exhausted this morning. Neither got more than a few hours of sleep, and even that came in fifteen-minute increments. Joanna assures me they slept soundly from 4:30 to 5:30 am. And that's it. There was one period of time where they had to work to get her pain under control, and then Tess was up all night with itchyness all over her body - an unpleasant but expected side effect of the pain meds. When I arrived in her room, Tessa's face was all puffy and here eyes were red and swollen. The doctors said that from a recovery point of view, she was doing great. But she certainly wasn’t happy.
We watched Charlotte’s Web in the morning to try and distract her from her itchyness. At the end of the movie, the credits began to roll and I moved to turn it off. “No daddy, I like this song.” It was Ordinary Miracle, by Sarah McLaughlin. Tessa closed her eyes and her face relaxed listening to that song. I thought to myself as Sarah serenaded my daughter to sleep, that’s just what we needed: an ordinary miracle. She just needed to be able to sleep for a while. She’s done it every day of her life - not for as long as we’d ever like, mind you - and it’s a very ordinary thing. Yet hearing that song and watching my daughter drift off to sleep, I thanked our God for finally letting her little soul rest.
The rest of the day has been great. They’ve moved us out of the ICU and up onto the 10th floor to a med/surg wing. The TV here has one of those remotes with a speaker in it. After trying to talk into it ("Hello? Hello?"), Tess realized it wasn't a telephone and just snuggled up with the device to listen to her afternoon movie. We have a private room, which surprised and pleased us! And there’s a Sony PS/2 connected to her TV, so I’m trying to convince Joanna that she should go home tonight and get sleep and let me stay here to play… I mean, to care for Tess. She’s taking fluids by mouth: as much Jello, Ice Cream and Orange Sherbet as her little heart can desire (or her tummy can handle, which isn’t much - maybe one cup, total.)
So we’re doing really well now. Tess is much more comfortable, able to sleep for a few hours this afternoon. If you’re still praying by this point, pray against the itchyness from her pain meds. She is only allowed Benadryl every 6 hours, and by the fourth hour she begins to feel itchy again. Pray also that she’ll be able to sleep through the night tonight, or at least for a few good chunks of time. We’re tired, but we’re in a good space as the sun begins to set over the Boston skyline.
But Tess and Joanna, on the other hand, were both exhausted this morning. Neither got more than a few hours of sleep, and even that came in fifteen-minute increments. Joanna assures me they slept soundly from 4:30 to 5:30 am. And that's it. There was one period of time where they had to work to get her pain under control, and then Tess was up all night with itchyness all over her body - an unpleasant but expected side effect of the pain meds. When I arrived in her room, Tessa's face was all puffy and here eyes were red and swollen. The doctors said that from a recovery point of view, she was doing great. But she certainly wasn’t happy.
We watched Charlotte’s Web in the morning to try and distract her from her itchyness. At the end of the movie, the credits began to roll and I moved to turn it off. “No daddy, I like this song.” It was Ordinary Miracle, by Sarah McLaughlin. Tessa closed her eyes and her face relaxed listening to that song. I thought to myself as Sarah serenaded my daughter to sleep, that’s just what we needed: an ordinary miracle. She just needed to be able to sleep for a while. She’s done it every day of her life - not for as long as we’d ever like, mind you - and it’s a very ordinary thing. Yet hearing that song and watching my daughter drift off to sleep, I thanked our God for finally letting her little soul rest.
The rest of the day has been great. They’ve moved us out of the ICU and up onto the 10th floor to a med/surg wing. The TV here has one of those remotes with a speaker in it. After trying to talk into it ("Hello? Hello?"), Tess realized it wasn't a telephone and just snuggled up with the device to listen to her afternoon movie. We have a private room, which surprised and pleased us! And there’s a Sony PS/2 connected to her TV, so I’m trying to convince Joanna that she should go home tonight and get sleep and let me stay here to play… I mean, to care for Tess. She’s taking fluids by mouth: as much Jello, Ice Cream and Orange Sherbet as her little heart can desire (or her tummy can handle, which isn’t much - maybe one cup, total.)
So we’re doing really well now. Tess is much more comfortable, able to sleep for a few hours this afternoon. If you’re still praying by this point, pray against the itchyness from her pain meds. She is only allowed Benadryl every 6 hours, and by the fourth hour she begins to feel itchy again. Pray also that she’ll be able to sleep through the night tonight, or at least for a few good chunks of time. We’re tired, but we’re in a good space as the sun begins to set over the Boston skyline.
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