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

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.

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

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.

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.

And She's Out!

Tessa (and the surgical team) did an amazing job! She’s out, and we’re now in the ICU at Children’s as Tess begins the recovery process. She is groggy, and barely conscious. The only things she’s really said so far are: “I can’t wake up, I can’t wake up” and “I can’t open my eyes.” After which, she opened her eyes, whimpered at us, and the went back to sleep.



Dr. Shamberger said that they successfully removed all of the extraspinal portion of the tumor (which was by far the largest part of it). They left the small piece of the tumor that had grown in between her vertebrae, because in every case that he has worked on, it causes no problems down the line. Then he knocked on the wooden armrest of the chair in which he was sitting. We should have the pathology results (particularly whether it is malignant or benign) by the end of the week and will then know what her follow-up will be.

After assuring us that she did great, that she’s fine, and that everything was okay, he said, “There was one little thing she did to us… or that we did to her, I guess.” He went on to tell us of an episode of asystole that lasted about 30 seconds. In other words, they were proceeding with the surgery when the anesthesiologist interrupted with, “Uh, guys, what are you doing right now?” And Tessa’s heart stopped beating. You’re familiar with that flatline extended beep sound from the movies? Apparently, Tess pulled that on them. The other surgeon working with Dr. Shamburger added to us, “Yeah, that really bugs them (the anesthesiologists) when the heart stops.”

The anesthesiologist asked them to “tickle the heart, please.” Only at Children’s. And that was all it took. Her heart started right back up again, and all her vitals went back to perfect. The only thing to which they could attribute it was a mechanical irritation as some of the instruments were pushing up against the heart to keep it out of the way of the surgery site. They didn’t have to call a code or do compressions. Just tickle.

So, she’s doing great. Her pain is under control, and she’s just regained consciousness. Emily, the Child Life Specialist just brought her some stickers and paper, and some white Crayola modelling clay to play with as she continues to feel better. Ahhh. No Dora.



We just wanted to get something out there for those who are checking the blog today. Thank you for praying, for fasting, for thinking about our Tessa. We are thankful for your friendship, your support, and your intercession before our God. He is good.

Surgery Has Begun

She’s in. The surgery has begun. And she’s been so brave.
We spent a few hours just meeting with the team that will be working with Tess today (Dr. Shamberger, the anesthesiologists, nurses and liason staff). And if you remember how highly I spoke of the Child Life Specialists here, there was another one working in the pre-op holding area. I thought they were really great people. She brought Tessa a loud, electronic Dora game. Enough said.



They dressed me up in the gown, gave me the little hair net and a mask. Tess said I looked great. I’m trusting her, but I have my doubts. Tess was given a mask and hair net for Growlie, Justin’s stuffed monkey which he gave to her to help her be bwave this week. Joanna had to stay in the waiting area because of her pregnant status, so Tess said goodbye to her momma and then we started off for the great OR adventure.

She was so brave. She didn’t cry, whine, or even act upset at all as we sat her on the OR bed. They let her play with the mask for a few moments before connecting it to the gas. She let us place the mask over her face without any objection. When she started to feel a bit woozey, she turned her head away a bit, but allowed us to turn her back. Within one minute, her little eyes rolled back into her head and she was snoozin’. They had warned us that she might twitch a little as she fell unconscious. As we were laying her down, she jack-knifed her legs into the air, almost kicking the anesthesiologist in the head. Way to go, Tess. Give ‘em hell.

Actually,
Lie still, child.
Be quiet and be at peace.
O God, guide the surgical team.
Grant them expertise and precision.
Great Shepherd,
Protect her little body from all pain,
Her spirit from all lonliness,
Her heart from all fear,
Surround her in this place.
Be near, O God, to our baby Tess.
Rejoice over her with singing,
Quiet her with Your love.
O Lord Jesus.

Pre-Op Visit and Cuddly Scorpions

Tessa had a great time at Childrens' on Friday. We were there by 7:30 am and spent the whole morning being passed from nurse to anesthesiologist to administrative team and finally to the drawing of blood for labs. Okay, that last part Tess wasn't too thrilled about. But the rest of the time there was a blast.



I had never heard of a "Child Life Specialist" They're all over the hospital, and you can request to meet with them. Their job is to ensure the best possible hospital experience for patients, siblings and parents. Because they're not involved in the actual nursing care, they had time to spend with us. We met two of them yesterday.

Haley sat us down and went through a picture book with Tess about what her day of pre-op would be like. She had the O2 sensors, masks and caps, and other instruments that would be used to assess her later in the morning which allowed Tess to play with them, familiarize herself with them. When the time came to put the oxygen sensor on her finger, Tessa took it out of the nurse's hand and said, "I know how to do this one," and put it on her own finger all by herself.



Haley called up to the child life specialist on the ICU and arranged for a tour for us. That was so helpful, as Tess will be staying in the ICU for observation on Monday night before being moved to a regular floor for the remainder of her time at the hospital. Again, the CLS was so friendly and helpful, explaining in street language the protocols and policies of staying in the ICU: from visitation limitations to parental presence requirements.

I was impressed. Both of these women were competent, able to connect with a shy little girl of 3 years, and they provided answers to all of our questions - they have helped to significantly prepare us for our time next week at Childrens'.

The only hard part of the visit was, of course, getting Tessa's blood drawn for typing, cross-matching and testing in preparation for surgery on Monday. I held her on my lap, and Haley came in and did her best to distract her with spinning lights and a big picture book. Through the tears, Tess kept asking us to stop, finally (and dramatically) adding, "I just can't take it any more!" They let her choose her very own beanie baby to take home with her, because she was so brave. She turned down the birdie. She didn't go for the duckie. She left the kitty in the bin, too. What did she choose? A soft, cuddly scorpion. Haley eventually tracked down a little puppy, which Tess immediately fell in love with, so she decided to give the scorpion to Justin - who thought it was the coolest!

So, we're all set for Monday's surgery and a week at Childrens'. This weekend, we marry off Katie and Nate up at the Seminary, then church on Sunday, and then off we go. They tell us that there's wireless internet throughout most of the hospital, so there's a good chance I can continue updating the blog to keep you in the loop (depending on the level of sleep deprivation).

I'm Feeling A Pint Low

I didn't pass out. That is a quantum leap forward for this 6'6" chicken. I really don't like needles. I've been trained in CPR, First Aid, and as a Wilderness First Responder (all of which have expired, mind you). And yet needles have an unexplainable power over me.

The last time I gave blood, I was teaching high school biology in Ottawa. The school was hosting a blood donor clinic at the same time I was teaching a unit on blood and circulation to my 11th grade classes. So we field tripped down to the gym to "watch Mr. B. get drained." And right at the end of the pint, apparently my color went white, I got dizzy and a little disoriented. I said something like, "I don't feel so good," and the nurses kicked into the frenzy of attempting to keep their donor conscious. They yanked the needle, tipped the bed back so the blood would rush to my head - at least that's what I remember. It's a little hazy because the room was blacking out and sound was getting fuzzy. I never lived down the stigma of that day. "Remember that time Mr. Bushfield passed out giving blood?" became a frequent refrain in my 11th grade biology class whenever they needed a good laugh. But they got the full pint out of me.

This time was much better. No blurring vision. The nurse was great. Joanna and Justin came with me in case I couldn't drive home. Justin was very brave for me, only covering his eyes and ears for a few seconds while the needle was put in. He was my courage. I got free parking and a T-shirt to show for it, and they let me keep the little orange squeezy-ball.

It's only a precaution - the directed donation. Tessa probably won't need the blood, they tell us. But just in case, she'll have it. And if she uses it, they say she might take on some of my more charming personality traits for a while. We head into the city again tomorrow for the pre-op visit with Tess. We'll know more about what to expect next week after spending time with the surgeon. Thanks for your continuing prayer and support.

We've done our best to explain to Tess what's happening inside her, and what's going to happen - without the gory details that would freak out the bravest kid. She has a basic understanding of the 'clump' inside her and that the doctors have to go in and take it out to keep her healthy and strong. Every once in a while, she shows some evidence of being afraid, although some of this vulnerability has been manifested at bedtime - and she's world renowned for knowing exactly which buttons to press to delay the inevitable requirement of unconsciousness.

So, for those of you praying out there, please pray for Tessa's courage. Pray that she'll be protected from irrational fear, and that we'll be able to strengthen her and comfort her through the next few days. And you can begin praying now, too, for her recovery post-op. I have no idea how they're going to keep her still so she can heal. Tethering a beam of sunshine seems a futile and less-than-possible proposition. We believe wholeheartedly that God is real and that he cares and answers prayer. We believe that the same power that raised Jesus from the dead - celebrated so recently this Easter - is available to be at work in the lives of those who trust in Jesus and live for Him. So please and thank you, keep us in your prayers.

They're Going to Suck My Blood

We're back, after more than ten days of non-blogging - I actually missed it. When last we left our hero, Tessa was waiting for a surgery date. Children's had originally hoped to get us in on April 23, but then had called back to invite us for surgery on May 14th. That was the soonest they could secure both a surgery slot in the OR, and a bed in the ICU for recovery. So Joanna and I started to work at being patient and thankful for the wonderful care we are receiving - even while being disappointed at the delay.

We started tackling some of the projects around the house we've wanted to get done before the baby comes (mid June due date). We painted the living room, dining room and entry way. I continued working on the bookcase and mantle in our living room. I built a work bench and took over the Chapel Street entryway as my workshop. Jo continues to sew curtains. And we cleared out what will soon be a quiet corner for the... gulp... baby! I started to re-re-arrange my work responsibilities here at the church, reinserting myself into the preaching schedule, picking up some of the daily duties and getting back into the rhythm of work and life. We even had the chance to get away, just the three pastoral staff here at church, for a retreat of evaluation, planning and praying for the people of our church. It was a refreshing time together, especially well timed since my mom is still here - I didn't feel like I was leaving Joanna all alone with the kids while I went off to play.

This morning, under the misty drizzle that was covering (and almost flooding) the White Mountains in New Hampshire, I got the call from Joanna: the surgery has been reinstated for April 23. That's Monday. That's this coming Monday. That's four days from now.

So that's why we're heading into Boston today to offer up my blood as a directed donation should Tess need it in surgery. We don't know her blood type, so they might not be able to use it. And she probably won't need it. But just in case, they'll have it on hand on Monday as they do the surgery. And if they don't need it, some other deserving soul will get a pint o' Tim for their use. Last time I gave blood, almost 8 years ago now, I almost passed out. We'll see how it goes this time. Justin is coming for moral support... I'll let you know tomorrow.

Things are Slowing Down

It's been a few days since our last post. That's because there's not much in the way of new information to report. We spoke to the administrative office that schedules surgery at Childrens' on Friday, because we had not heard back from them. They were to confirm the surgery date earlier that week.

It turns out that the date for Tessa's surgery is tentative, at best. Originally penciled in for Monday, April 23, the doctors are waiting on the imaging results from a few other patients whose surgeries require very specific timing between chemotherapy sessions and radiation treatments. As they have pretty much ruled out the necessity of chemo or radiation for Tess, these other children, appropriately, get first dibs on surgery time slots based on the narrow windows they have between treatments.

The administrator indicated that April and May were pretty full as far as surgery dates go. So we're not exactly sure what that means. They once again indicated that they knew what we're going through, and they reiterated their commitment to get Tess in as soon as possible. But we're in a holding pattern for now. Again. Which is okay.

Tess got her hair cut to what I'm told is a 'bob.' She seems even spunkier now with the cute hair cut than she did before. Kind of like how I feel faster on a basketball court when I shave my head. Aerodynamics and all. Anyways, it's still pretty hard to grasp that she's in need of surgery. She's so happy and playful. And it continues to be great having my mom here. Joanna and I are both getting more rest than would ever be possible without her, and the kids love having their grandma here to play with.

We'll post again in a few days once we hear something from the scheduling office about Tessa's surgery.

Inner Beauty

Normally, when you hear someone say that she's beautiful on the inside, one assumes the euphemism and pictures someone 'less than attractive' on the outside. Well, we spent an hour with Dr. Shamberger on Tuesday afternoon, and he showed us Tessa's innards, slice by MRI slice in perfect clarity. Well, our baby girl really is beautiful on the inside. He even said her tumor was beautiful (as far as paraspinal tumors go)! We were also able to see the part of the tumor that is growing into her spine between the vertebrae.

He gave us a tentative surgery date: April 23. She'll be in the hospital for five days. That means that Jo and I will be in the hospital with her for five days, as neither of us can really envision leaving her behind and driving away. We continue to be thankful that my mom is here to help us!

It was an odd conversation with the surgeon in many ways. First, I was only able to pay attention for bits and pieces of it, because Tessa decided to be high maintenance: using me as a human jungle gym, demanding "Momma's hair" to play with, talking rather loudly and generally making it impossible for me to hear or process anything Dr. Shamberger was saying. Eventually, we removed her to the waiting room where "A'Ly" (my mom) was reading to Justin.

It was also odd in that, since Tessa's tumor has been caught so early, the surgeon was very confident and almost relaxed about getting it out. He described some "really challenging" tumors that he's had to work on this year, some that have wrapped around the spine, invaded the liver and other organs, or grown into the lung or muscle tissue. In contrast, it sounded like Tessa's tumor was almost insignificant to him - or perhaps that it just wasn't very interesting.

Which put me into a state of disequilibrium: This is a big deal to me. Tessa's tumor is a big deal. They have to open up our little girl and cut it out. But compared to so many kids we have seen while at Children's, we also know how blessed we are in catching it early. So it almost feels like we don't have the right to be afraid, or worried, because so many others are so much worse off. But in the real world, knowing how fortunate we are doesn't remove any of the apprehension and emotion we face knowing that our little girl is sick. So we're living in paradox: we're grieving and celebrating; we're burdened and blessed; we're fearful and thankful. We're working through the uncertainty and darkness as we celebrate God's grace and provision.