Test #3: Great News from the MIBG Scan

We spent Friday morning at Children's again, and had a wonderful time. Tessa was a star. She was completely immobilized - wrapped up in blankets like a burrito and then taped to the scanner bed. Her claustrophobic dad had a little trouble breathing just watching her wrapped up like that. But Tess? No problem. Happy as a clam. Besides... she got to watch Cinderella as the scans were being done. I took some pictures with my Treo, and if I ever figure out how to get them off the handheld and onto my computer, I'll put some of them here. There. Here's some.



The good news came when Dr. Gordon called us later in the day. Here's the background information that makes his news into good news. MIBG is short for some crazy-long chemical name that has been manufactured as a radioactive isotope. It is a substance that is taken up by neuroblastoma cells (malignant tumor cells) in the course of their normal metabolic activity. The test involved getting an injection of this radioactive MIBG on Thursday, and then coming back in to be scanned on Friday. If there were any other growths elsewhere in her body, they would have showed up as bright spots on the scan, having collected this MIBG overnight. So any other bright spots on the scan would indicate that the cancer had spread to other locations in her body.

The scans took just under two hours - scanning her feet and legs, hips, chest and arms, and head. The test showed no other growths anywhere else in her body. So it looks like this single tumor in her back is the only one. Going even further into the land of good news was this: Even the tumor we know she has didn't show up on the scan. Since a neuroblastoma tumor would have collected this MIBG stuff and lit up like a Christmas tree, this finding points away from this more malignant form of tumor.

That means that it is more probable than not that Tessa's tumor is a ganglioneuroma, not a neuroblastoma. They still won't know for sure until they take it out and look at it under a microscope. But it looks like it's the "good tumor," the one that is much more benign.

So we're thrilled. Not thrilled that she has a tumor, but thrilled that it looks like a less serious one, that hasn't spread anywhere else in her bones or tissues. While this one tumor has grown into her vertebral column somewhat, it's not near her spinal cord and it looks like when they take it out, it'll be gone for good. Thank you, Lord.

That's where we're at. The next step comes on Tuesday, when all the radiologists and surgeons, together with the oncologists, look at all her test results and images in a single sitting, and then make decisions from there. Joanna and I meet with Dr. Shamburger on Tuesday afternoon, so we'll have another update after that.

Test #2: MRI Not as Good, But Not Bad

It's 10:00 at night, and we're pretty tired. Just getting the kids to bed... sedating a 3 year-old for the afternoon can mess with their sleep schedule somewhat. We spent the afternoon at Childrens for Tessa's MRI. She did great, as usual. She didn't enjoy getting the IV, but was asleep in no time once the sedation kicked in. She was very still. Good girl.

Dr. Gordon phoned us tonight. He does that after each test, we're realizing. It's nice that he takes the initiative and that we don't have to hound the hospital for answers or results. Anyways, here's what he reported:

The rest of Tessa's chest looks clear, which is great news. The tumor looks pretty much just like they expected it to, which is also good news. However, it looks like the tumor has encroached (his word, not mine) into the vertebral column. Translation: the tumor looked at first glance that it was lying between the spine and the lung. Now it looks like part of it has grown into the spine, between some of the vertebrae. He said that it is nowhere near the nerves of her spinal cord, so there's no increased danger there.

It does mean that a neurosurgeon may be needed, in addition to Dr. Shamburger, for the actual surgery itself to remove the portion of the tumor that has grown into her vertebral column. We haven't seen the MRI images yet, and it's hard to visualize what this looks like. But Dr. Gordon made it sound like this was the expected outcome - that this was par for the course and that Dr. Shamburger will be the one to decide if he wants to call in a neurosurgeon to work with him in removing the tumor.

And Tessa just walked into the family room, holding Cameron (her stuffed wiener-dog), making him whisper-bark. "He's bawking qwietly." I think the medication just wore off. Great. She's really cute, but she'd be a whole lot cuter lying asleep in bed right now, methinks.

We don't know how to react right now. I'm not sure there's anything to react to. So, we'll just go to bed, because we have to leave at 6 am tomorrow morning to get back to Children's for her MIBG test.

New Test Dates

Just a quick post today: they rescheduled some of Tessa's tests for the end of this week. I have heard from some of you that you're actually praying for Tess at the time of these tests, so I want to be sure you're praying at the right time!

The MRI will still be taking place tomorrow (Thursday) at 12:30 pm at Children's Hospital. She will need to be sedated for it, and so they'll be putting in an IV. Tess doesn't enjoy that very much. She was brave last week when they did it, but she didn't know what they were about to do. Now she knows. So pray for courage for her. When that test is finished, they'll use that same IV access to give her the injection for the MIBG test, and then send us home.

We'll head back on Friday morning for an 8:00 am MIBG test, where Tess has to sit perfectly still for around 2 hours. They'll put on a movie for her, and we can be in the room with her. Pray for Jo and I, because the last movie she chose (at her bone scan) was Dora the Explorer, and I'm not sure I can handle any more of that little, animated girl shouting at me from the television!

So if you would be willing, pray during these specific times.
On Tuesday of next week, we meet with Dr. Shamburger (the surgeon) and he'll walk us through all of the results and where we go from here. Thank you so much for the emails, cards, and phone calls. We feel so supported and cared for.

A special thanks goes out to Cameron, my nephew in Ottawa, for remembering to pray for Tessa every night! Cameron is two-and-a-half years old.

Test #1: Bone Scan Clear!

We received word late last night from our oncologist that the Bone Scan results were in, and that there was no evidence of any cancer activity elsewhere in Tessa's bones. Again, not conclusive evidence, but simply another piece of the diagnostic puzzle to be considered by the physicians overseeing Tessa's care. But we are thrilled and praising God for continuing to walk with us through this process.

I thought I'd share some of Tessa's artwork: I mentioned earlier her self portrait, so here it is. She began by drawing her 'clump' (the small blob to the right side of the drawing). Only after her clump was drawn did she then proceed to draw the rest of her body.






And just to show off her artistic ability, here's a picture she drew of her daddy. A fairly accurate representation I'd say. In explaining the picture, she said, "This is daddy when he had little spikey hairs. He has teeth." It's important to have a strong self image as a parent, especially when kids start drawing such flattering pictures...

Super Tessa and the Bone Scan

Today (Monday) was the first of the three diagnostic tests to help the doctors at Children's Hospital narrow down the range of possibilities for the tumor in Tessa's back.

In order for the bone scan to work, a tracer or some kind of radioactive solution had to be injected into Tessa's bloodstream. Then we had to wait 3 hours and come back for the imaging. Tessa was brave, but getting the IV into her hand hurt. Even in that painful moment, she was so polite, asking through the tears, "Please take it out, please will you stop doing that?" She was "vewy bwave."



Upon successful completion of the first step, Tess was rewarded with a prize from the treasure chest. She chose a pink, squishy stuffed lizard. She looked up at the nurse who had given her the injection and asked, "Can I have another one to give to Justin?" And the nurse said yes. So, armed with two squishy, stuffed lizards (imaginatively named 'boy' and 'girl'), we headed off to our next appointment of the day.

Across the street, we met with Dr. Frazier and Dr. Gordon at the Dana Farber Cancer Institute. They will be overseeing Tessa's care throughout this process. They took more of a back history, and answered some of our questions. But our biggest question, "Just what kind of tumor is this?" could ony be answered with, "That's what we're doing all these tests for. We'll have more answers next week after we have the results in hand." But they were very understanding about the waiting game we are stuck in, and encouraged us to call with any questions we might have.

The one new piece of information we received from them was this: The urine test from the ER visit last week came back negative. Apparently, one type of tumor that she might have can secrete a chemical into the bloodstream as part of the metabolic activity of the tumor cells. This chemical was not present in Tessa's urine. They said that was good news, but still not conclusive. We won't know anything for sure until tumor cells are seen under a microscope.

Returning to Children's, Tessa was amazing for the actual bone scan. The nurses were excellent! Rambunctious and playful, they were racing her to get ready, running through the halls with stickers and balloons, lab coats flapping in the wind. Tessa was able to lay perfectly still for the six scans of the different parts of her body. It was great practice for the MIBG.

It was a long day, but Tessa did really great. We get a day off tomorrow! No tests, no trip into Boston! Tessa gets to go back to preschool like a normal three-year-old, with the exception of a Tweety-bird bandaid on the back of her right hand - which she specifically requested that we leave in place so she could show all her friends during Show'n'Share.

Little Girls Twirling in White Dresses

We're back from the wedding, and what a beautiful affair it was. The weather in Naples was perfect, and Jeff and Lisa are now officially husband and wife.

Justin was a brave ring bearer, walking with dignity and poise up the aisle with Gracie and Tessa, who were both flowergirls. After much bravado in rehearsal, Tess was a little shy and the wedding coordinator, Tanya, ended up walking with her up the aisle to help her be brave. And yes, full bribery was employed: Justin got a Hot Wheels Ford Shelby GL-1 Concept Car and Tess received a mini-My Little Pony for successfully making it to the front of the church.

The reception was back at the Oxley's condo on the beach, with a beautifully manicured lawn stretching out to the ocean. Tessa, Gracie and Isabel whirled and danced around together, laughing, falling down, and getting back up again to run and dance some more. We seemed a million miles away from tumors, hospitals, pinches and diagnostic tests.

My mom did great coming home on the plane. It was her first time flying... ever. Even through the little bumps and minor turbulence, she was calm, cool and collected, even falling asleep for a short time. The pilot even gave her little stick-on "wings" for successfully completing her first flight.

Tomorrow is the bone scan at Children's Hospital. Back to the real world. But overall, a beautiful, fairy-tale weekend.

And Suddenly We're In Florida

The waiting game is over, for now. We received word yesterday that all three tests have been scheduled on three different days next week. The first will be the bone scan, scheduled for Monday morning. On Wednesday, we'll be heading in for the preliminary work for the MIBG test, and then returning on Thursday for the MIBG and the MRI.

That meant the family was in the clear to head to Naples together for Jeff and Lisa's wedding. We had about 2 hours to book tickets, rent a car, pack, and get to Logan. I'm typing from the hotel room in Naples, so somehow we pulled it off. My mom was able to meet us in Orlando, and after a quick high-five with my dad, he returned to Daytona and Mom came with us to Naples to help with the kids. She'll be flying back with us to help during a week of many tests.

After breakfast together this morning and a few errands, the family went to the beach while Tim and Jeff finalized wedding details. The rehearsal is now complete, the dinner was delicious, the wedding is tomorrow and we fly out first thing on Sunday morning. A whirlwind trip, but great to celebrate with Jeff and Lisa.

Tess drew a picture of herself before we left. It started with a round circle: "This is my clump." Then she drew the rest of her body around it. I've heard that kids very quickly define themselves by their illnesses. She's so positive, so rambunctious, so not sick. Kind of 'matter of fact' about the whole thing. She's one of the flowergirls in the wedding, and Justin is the ring bearer. So please pray that they'll not be afraid tomorrow. Pray that they'll actually come up the aisle!

So we probably won't be posting until we go through the Monday bone scan ordeal. We continue to be thankful for all of you - for your prayers, for your concern. We'll post again when we get home.

The Waiting Begins

Today we are waiting. Now that we know the next step is these three tests (MRI, MIBG, bone scan), we are simply waiting to find out when they will be scheduled. It looks like our family will not be heading down to Florida for Jeff and Lisa's wedding this weekend, although I'll still fly down on my own... I am officiating, afterall.

I had a chance to get in to see Roman and Joelle, and little baby Isaac today. They are all great: Joelle looks fabulous, and Isaac is one handsome, wrinkly, squinty-eyed, wriggling gift from God. Roman seemed to be able to pretend to be relaxed, in spite of all that is on his plate these days. Congratulations, guys. May the Lord bless Isaac and may he grow to be strong with the Lord, bringing laughter to your lives as God proves He can do the impossible any time he feels like it.

A brief scare today as the MRI department contacted us and indicated that Tess could not be scheduled for an MRI for 4-6 weeks because of the pneumonia diagnosis from last week. That would push the entire diagnosis / treatment plan back by months. I don't fully understand the reasons for that, but upon pressing them a little bit, it appears they have conceded to schedule the MRI in the next few days. Hmmm. But still no word on when that will be.

So we wait.

Thank you for continuing to pray. Pray for patience with two rambunctious kids. Pray that we'll not get so wrapped up in our situation that we'll forget to love others along the way. Pray for J and Tess that they'll understand to some extent what is going on, and be able to experience something of God's peace through all this as it swirls around them. And thanks to all of you who have offered to help in so many creative ways. We are so grateful to be in such a loving community.

Tim and Jo.

The Smart People Have Spoken

We brought Tess home from Children's Hospital last night, after 14 hours away from home in the Boston hospital system. Tired, a little overwhelmed, but home. We slept great. Tess is as spunky as ever.

We heard back from the oncologist handling Tessa's treatment. The radiologists, oncologists and surgeons (all the smart people I was referring to) just got out of their meeting and they agree on the next steps for diagnosis. Over the next two weeks, Tessa will be scheduled for an MRI, an MIBG tracer test, and a bone scan - to confirm operability and make sure the mass has not invaded the spinal column or the actual bone of the vertebrae.

Once the results from this test are all in and analyzed, they'll be much better equipped to put together a treatment plan and be in a position to schedule surgery.

We did get word that the surgeon that has taken her as his patient is THE surgeon that all the other surgeons go to when they have questions. The oncologist was so excited that we got him.

Thank you for praying. Both Joanna and I are, remarkably, pretty okay with all this. The initial shock has settled into a pragmatic commitment to do whatever it takes to see this through. We attribute this to your prayers (and to some good defense mechanisms kicking in). But the other thing you can be praying for is our ability to give our full attention to our kids. Jo and I are both a little distracted, and we need to be able to be fully present for our kids - even through... especially through... something like this.

The Accidental Blessing

Thank you for caring about our family enough to get caught up on what's going on. As some of you know, Tess was started on antibiotics last week (Mid-March) for a pneumonia-like infection in her left lung... no big deal. She's still tearin' around the house like she always does.

Dr. Danis, our pediatrician, looked back at the diagnostic x-ray on Saturday, calling me just before the Leadership Community meeting, because he had seen something on the x-ray that worried him. So he scheduled us for a follow up CAT scan this morning (Monday).

Tess was very brave, and didn't even need to be sedated for the test (especially with her dad contorted into the donut-shaped machine so she could see the pictures of the story book I was reading to her). But the results of that test confirm a "mass" growing between her spine and her right lung, measuring 4 cm x 6 cm. We were then immediately sent to Boston Children's Hospital to consult with specialists in the fields of radiology, oncology, and pediatric surgery.

This seems to be one of those situations where a casual x-ray for a different purpose leads to the the 'accidental' discovery of something they never would have found otherwise.

We're in a holding pattern right now at Children's Hospital (it's Monday night). The staff here are fabulous. Tessa is having a ball, except for the IV in her arm. But we're waiting for labs and potentially for an MRI to get a better picture of the mass. Tess is getting tired of this whole ordeal, and the stress is wearing on her. Dean and Pam have graciously welcomed Justin into their family for the day, so we're thankful there, too.



Would you please pray for Tess? Heck, pray for us, too, and for the doctors and nurses here at Children's Hospital. We are so thankful for each of you, and want to stay in touch, so we'll try our best to keep you in the loop. But please cover us in prayer, because our God can do anything!