12 posts tagged “thomas bickle”
so ... i cried in front of the "self-help" section of the bookstore last night ... realizing what i was looking for was something to take away this pain, but ... there's nothing... nothing will take it away. yes it may help but it wont change the reality of what's happening for the pain im feeling so deep in my soul
so ... im heartbroken to say the least ... but here is my sister's blog post ... i feel it's appropriate for HER to tell YOU where we are now with my nephew.
""One of the things Thomas’s oncologist is good at is warning us when we’re about to hit the big stuff. Phrases like, “I have bad news” give our minds time to race to emergency stations and brace for what’s next.
So, I have bad news.
Thomas’s MRI results from last week showed that his tumor is back. It is inoperable. We have discontinued chemotherapy.
We
are sad, intermittently, or underlyingly: it's hard to believe this is
real when Thomas is riding around on his trike and "talking" on a
plastic measuring cup held to his ear. Off the chemo and not
experiencing effects of the tumor yet, he's a handful, squeezing the
fun out of every moment of the day.
I don’t know exactly how the immediate future will look. There are conversations and meetings to be had, some easier than others. I think the next couple months with him are going to be golden, so we're going to try to focus on that.""
that said... im destroyed. one moment i am fine and then next im hysterical. this is all so surreal, i feel like this is something i'm watching on Oprah or something I would watch on Extreme Home makeover. It's crazy. it's so NOT fair. they have fought so hard... i cant help them. I can try and be strong ... i know... that's what my sister needs. but I want to hold him in my arms and tell him everything is going to be alright... i want to take this pain away for my sister. but i cant. she is loosing her baby, my brother is loosing his son... my family is loosing their 1st grandbaby ... i am loosing my nephew. i am so angry, i am so sad, i am so heartbroken. this is just all too much. I know that thomas will be in a better place, but we wont. we'll still be here without him. we will still be here....
Thomas is doing alright. His surgery was last friday and things were alright. In his routine scan they do after surgery they found another tiny part of the tumor that they missed and had to go back in. So on Tuesday they went back in and did surgery again. But, after THAT surgery he is doing well now. He is resting and starting his slow stage recovery.
So, although the whole situation sucks. It's nice to know he's doing better. Now we have a long road of Chemo ahead of us... SO ... keep the Bickle Family in your thoughts.
I know it's been forever since I've written, but that's mainly because I still don't have a computer of my own that has internet access. Brian's laptop broke, mine had been broken, my desktop has a cpu fan out and the wireless card I have in it isn't strong enough to pick up what we have set up here at the house. BUUUUUUT, anyways.
I start school on the 27th. I am only taking one class. Intro to Business, Mondays 7-945pm.
It shouldn't be hard at al
Show us a picture of someone you admire.
Submitted by Rev Stan.
She's the strongest woman i know. my sister.
http://thomasbickle.blogspot.com/
This is a really horrible story. (This is a real life tragedy about a family whose baby, at only 5 months old, was shaken and is in the hospital fighting for his life. Kaleb, the only son of Kristy and Josh has been in the ICU since May 9th.) I mean... just who could do this to a child. After watching my nephew
Just take a second to read their story and put one more good thought their way. . . May mercy,grace, and healing fall upon this family.
http://www.myspace.com/helpkaleb
What were you doing one year ago today?
Submitted by CassandraMorgan.
soooooo i'll let my sister tell you in her own words:
Decannulate This
Thomas pulled his trach out yesterday evening. Scott couldn't get it back in. He loaded Thomas up in the car and carted him toward Children's. He called around, got hold of all the docs who have to talk to us about this stuff.
I left work early, picked up dinner, prepared to sit in the ER for several hours. When I got there, Thomas wasn't listed in any of the ER rooms. I called Scott.
"We're on the playground," he said.
I went outside and saw Thomas come down the slide. No trach.
"They still haven't seen you?" I asked, worried.
"They did. They're gonna leave it out." Scott said.
We have cried on that playground more than once, but this was the best time ever.
He's pretty darn cute if i do say
so myself?!! this is my nephew Thomas Bickle, if you've been around my blog you know his struggles, but he's starting to be a real boy. We got great news that On my BIRTHDAY WEEKEND (april 16th), He's going in for an over night study and if all goes well, they'll take out his trach and he WILL be a REAL BOY!!!! how exciting is that!!!!!! yay!!!!!!! (not sure why the videos arent working, but ... they are darn cuuute. but here's a picture to delay until i figure out the video thing)
This is the story of my nephew Thomas Bickle as written by my sister.
Please Read. Link to it! share it!
thanks everyone.
Tomorrow I will be posting a link to an eBay auction for some beautiful Quilts:
Thomas's Story, Part 1 of 3 -march 14th, 2006
The way it usually works is this: new mother says to the pediatrician, “Doctor, my baby is irritable and running a slight fever. Clearly he has a brain tumor.” And the pediatrician says, “Oh, sweetheart, don’t be silly. It’s just an ear ache.”
So imagine my surprise when the situation was reversed. As the nurse checked Thomas out for his six month appointment, I explained how Thomas had some symptoms left over, I thought, from various recent illnesses.
She checked his head size three times. I figured I was distracting her with my senseless talk about symptoms that were obviously typical kid stuff. But she kept asking questions, and I found myself answering yes. Has he been particularly irritable lately? Has he been hitting his head or crossing his eyes? and finally, have his developmental milestones slowed down recently? Now that you mention it, yes.
She brought in the pediatrician. “Mom,” the doctor said, because we’re just Mom or Dad at the pediatrician’s office, “I have some concerns. I’m not certain what it is, but this is very serious. They’re going to test and see if it’s perhaps a tumor or maybe meningitis. I’ve called Children’s Hospital in Dallas, and they’re ready to admit you when you arrive. You should call your husband.”
Nothing really registered except the last part. Scott had the first exam of his graduate career that night. “Can I wait until we know what it is before I call Scott?”
Our pediatrician looked at me puzzled, and then very kindly, and I replayed what he’d just said in my mind. That’s when I started to cry.
Thomas's Story, Part 2 of 3
So, as far as brain tumors go, it was a big bad one. Technically speaking, an ependymoma. We saw it highlighted in green on the MRI readout, growing out of the fourth ventricle with big ram’s horns and looking like something that might appear in gigantic replica over a heavy metal concert stage.
Our neurosurgeon - twelve hours in and we already had our very own neurosurgeon -- walked us through the tumor itself and the possible outcomes of surgery. Our social worker -- we got one of those, too -- cried along with us at that point.
The day of the surgery, all of our family and very close friends came up to the hospital. I'd never really understood hospital visits or vigils before; showing up when there isn't anything useful to do just isn't my style. Now I understand. Our loved ones came to stand by us, like a congregation that stands when scripture is read. There comes a point where there is nothing to do but put your body in the way of what's coming.
Thomas's Story, Part 3 of 3
So I walked back in after the surgery and I remember my dad standing up, and I thought, that's right, that's right.
But I had good news. From what I have heard, most infants don't survive ependynomas because the tumor is too large and too tangled up in their nerves by the time it is found. Thomas's tumor -- we found out Thomas has probably had his own tumor, unique as a snowflake, all along -- "released easily" according to our neurosurgeon. When he said this, he made the motion your hand makes when it lets go of the refrigerator door. In my mind, the evil rams-horn tumor face lifted off the stage and flew back to wherever it came from in the rafters.
So Thomas has a pretty good shot given the fact that our neurosurgeon seems to have removed the entire tumor. At least, that's what our oncologist says (We got our very own oncologist before the week was out). He says that if Thomas was older, he'd radiate right away, but that no one does that on six month old babies whose brains are still developing. So we wait. Six months of chemo to hold that evil rams-horn tumor at bay, and then we get to radiate the sucker into smithereens. That's the plan anyway.
Brain Surgery
Yesterday was a long day, but let me start with this morning: when I talked to Scott this morning, he and Thomas were watching Fievel Goes West (you remember) together. Scott said Thomas had sat up with him for a while, played peekaboo, even smiled once. That's good to hear. I had only seen him asleep after the surgery yesterday, before I went home to crash after our exhausting day.A day with surgery starts the night before. Surgery sends up this special soap and we have to wake Thomas up in the wee hours to wash his little head. Last time they sent these terrible hard plastic brushes. I had insisted on helping, but I cried the whole time, and Scott had to hold our wailing baby over the sink. This time, it was much gentler. Thomas stood holding onto the rails of his crib, and the nurse talked to him and gently rubbed his head with washcloths. Thomas is very grown up now, so I just sort of spotted (the rubbing made him a little wobbly) while he babbled to the nurse.*
We went down and met all the anesthesiologists, talked to the neurosurgeon again, and kissed Thomas and handed him to the nurse. Upstairs, we tried to figure out what to do with ourselves while we waited. There were board games, the paper. I knitted the ugliest hat I've ever seen in my life.
Finally, the doctors appeared. He's fine right now, sleeping but he'll wake up. We got through the cyst, they said, but there was tumor underneath. About the size of my thumb. And.
Wait, I said. Wait.
Tumor is bad news. It means that chemo didn't work. Chemo doesn't usually work that well against ependymoma anyway, but we had to hope it would since Thomas has been too little for radiation.
The good news, the goodish or less-entirely-awful-news, is that we were already planning on starting radiation therapy soon. We did manage to get Thomas's brain through its first year - he'll be one on Thursday - and now is the soonest that it might be reasonably safe to radiate.
Radiation is a much more effective weapon against his kind of tumor. And Thomas's neurosurgeon did get the whole tumor out again - that's good news too. Practically speaking, this new finding doesn't change our approach for now, like I said. I guess we've just learned that this tumor is not the kind of tumor that gives up and goes home, not even when chemo makes it uncomfortable. I think we'll be ok, though. We're not that type, either.
The rest of this week should see Thomas improving pretty rapidly - they even think he'll be out of ICU and on the floor in time for his birthday party on Saturday.
CURRENT, Part I - feb.22, 2007
Earlier this week, I was talking to my smart friend Chris the other night about Thomas's MRI. *
"I was happy to hear about that," he said, "but what does this mean for him?"
I gave a long, complicated answer, and he said, "So, the last MRI - that one couldn't have shown much good news or bad news. It just would've shown if there was any really bad news?"
"Yes," I said.
"But this MRI," he went on sagely, "it showed that there wasn't any bad news, and it showed it clearly enough that you can say for sure that it's all good news...right?"
"Wow," I said, "That's a great way to explain that. I am totally going to use that on my blog."
We won't have a stamp of "cured" for Thomas . . . really ever. Adult survivors are frequently haunted by the cancer treatments they had as a child. In the meantime, ependymoma has a ferocious recurrance rate.
If Thomas can make it to three years old, however, without the tumor returning, we can take our oncologist's number out of our speed dials. Every MRI we have that looks like this one increases Thomas's chances of survival. Especially since his tumor was entirely resected both times, we have dared, recently, to be pretty hopeful about his chances.
That's the important stuff. Context part II, an update about the other crazy parts of our life, to come later this week.
resected: surgically removed
*I'm
going to use quotes here, but it's my made-up version of what he said.
If you ever want to make someone really mad, try using this technique
in a heated argument!
CURRENT Part II- feb22nd
The part about Thomas's status (see Part I) is the important part. If that's in place, we can do anything else. There's a lot of the else, though.
We are dealing with the every day-ness of life with the trach and the tube. Thomas is getting to be a really active, social fellow, and right now we're trying to figure out how to help him play with other kids more. It's been hard to fit extras around Thomas's and Scott's doctor appointments, our collective month-long cold, and Scott's (improving) weakness. We recently found out about the coolest ministry ever, which means we may see a little more of life outside the house soon.
Money-wise, things are ...interesting. In the beginning of all of this, we were overwhelmed donations and diapers*, and we managed to go almost a year on a quarter of the pay we had had before. These days, I'm working full-time. Thomas won't be able to go to day care until his trach is out, so Scott is home until he returns to teaching in the fall. M-a-y-b-e the trach will be out by then? We hope so.
We are figuring out the work thing - Scott's wrist issues obviously slowed us down a bit. We were getting panicky, trying to plan through to August. The last month or so, however, brought a modest bump in donations, and we re-engineered a couple of the bills. We are also running one last set of fundraisers - we're auctioning off a few of the dozens of quilts we received for Thomas. I'll let Scott introduce that ebay deal tomorrow. (I know our readers have already donated the heck out of themselves, so this is just a heads up in case you know some quilt lovers who'd like to bid.)
Anyway, I've been thinking about this year - in a little over a week it will be exactly one year since I walked in for Thomas's checkup and ended up on the neur-onc floor. I never would have dreamed that we could have survived this. Some days I'm not sure we did. I feel like someone who drowned in a flood, but then was been pulled out and resuccitated. I am alive, but my heart beats so fast when it rains.
It's been sunny this last week, though, literally and figuratively. Scott's getting better. Thomas is excellent, if snot-riddled in a typical-toddler-cold kind of way. He finally really needs a bath each night because he gets so dirty doing all his important toddler business. I look at him toddling around behind his push-toy, and I think, no, we're not there yet, but we are pulling through.
*
We actually just ran out of diapers donated by the Jasper High School
English Department. Thanks once again with big hugs to Mrs. Zellner and
all the kids and teachers who stuffed my Civic full - three times! -
with diapers!
DALLAS MORNING NEWS ARTICLE
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Support system helps couple deal with son's cancer
07:51 AM CST on Monday, March 20, 2006By KIM BREEN / The Dallas Morning News
Sarah Bickle never understood the point of hospital vigils
until her 7-month-old son underwent brain surgery on a cancerous tumor.
Friends and family became a cocoon that shielded her and her husband,
Scott, from the unimaginable challenges confronting Thomas, their only
child.
photo by CHERYL DIAZ MEYER/DMN
Thomas Bickle had a brain tumor the size of a racquetball. He'll start chemotherapy soon.
"With a blow this big, you just want people to put their bodies
in the way," said Sarah, a teacher at Jasper High School in Plano.Sarah
Bickle never understood the point of hospital vigils until her
7-month-old son underwent brain surgery on a cancerous tumor. Friends
and family became a cocoon that shielded her and her husband, Scott,
from the unimaginable challenges confronting Thomas, their only child. "With
a blow this big, you just want people to put their bodies in the way,"
said Sarah, a teacher at Jasper High School in Plano. Now the
Bickles are turning to a growing support system of friends from school,
work, church and the Internet to help them face their son's future. Thomas
Bickle sits in his bouncy seat, his gray-blue eyes fixed on his
father's face, his baby fingers reaching for Scott's nose. He wears
blue-striped feet pajamas and a goofy grin. Thomas' brain surgery
three weeks ago left him with a feeding tube in his nose and tiny
stitches on his head. The tumor also robbed him of his baby babble.
Surgery or the tumor, or both, injured his vocal chords. He can't cry
or make a sound. When Sarah brought Thomas to his six-month checkup
late last month, she thought he was still recovering from recent minor
illnesses. But after the nurse measured his head three times, the
pediatrician gave the news: Something was seriously wrong. Thomas would
need tests to look inside his head. Still, Sarah and Scott managed
to hold on to their laid-back sense of humor. On the way to the MRI at
Children's Medical Center in Dallas, hospital staff asked whether
Thomas had any metal on him. "Just a nipple ring," they joked.
But when they sat with the social worker and neurosurgeon to look at
the pictures of Thomas' head, they saw a tumor with appendages that
looked like green horns growing out of their baby's brain. The couple
asked for a room alone and dissolved into tears. Dr. Brad Weprin,
director of neuro-oncology, said the tumor was about the size of a
racquetball. Pieces of it wrapped around Thomas' brain stem and nerves
and spread to his inner ear. "The surgery went very well," Dr.
Weprin said. Tests show that no tumor remains, he said. But Thomas'
fight is just starting. The doctors say it's very likely a tumor will
grow again. Doctors typically treat children with Thomas' type of
tumor –called an ependymoma – with radiation after surgery. But
children with the tumor are usually several years older than Thomas.
Radiation, the most successful treatment, is typically not used on
babies because it affects their developing brains. Doctors plan to
treat Thomas with chemotherapy starting this week. They say it's less
effective than radiation. But they don't want to use that treatment
until he's 2 or 3 years old. The prognosis is fairly good for older children, Dr. Weprin said. "In younger children, the results are not as good." Still, he is cautiously optimistic. "My goal, my hope, is for him to grow up and die of natural causes, not from this tumor." Scott resigned from his job last week to take care of Thomas once he comes home from the hospital.Sarah's
insurance will cover most of the medical expenses, so she'll continue
to teach. Still, the family's out-of-pocket medical expenses could
reach several thousand dollars. The family was already struggling
financially before Thomas' illness. Updates to their 50-year-old
Richardson home and bills from Sarah's unexpected Cesarean delivery
with Thomas in August drained their bank accounts. She had already
used up her paid leave because of required bed rest during pregnancy
and recuperation after Thomas' birth. Neither Sarah nor Scott is
drawing a salary right now. She plans to return to the classroom soon.
The couple has turned to the Jasper High School community and the
Internet for help. Sarah's principal, Michael Novotny, posted on the
school's e-mail listserv to parents about Sarah, who teaches English as
a second language. Sarah writes regularly on a blog about Thomas' trials: www.thomasbickle.com. The site allows people to donate online. It
also helps relay news to countless concerned loved ones and
acquaintances, and it gives Sarah an outlet to talk about what is
happening. "There's not even words for this," she said. "It's so
surreal, so hard to get your head around." She doesn't know how to
respond to people who ask how she's doing. "It's really hard to say
where we're at." So, she writes. Scott regularly sleeps on the
couch in the ICU. Friends deliver food daily and schedule visits so the
couple won't ever be alone or inundated with guests. Sarah and
Scott, both in their late 20s, are exhausted and emotionally raw.
During a recent visit, he seemed close to tears while talking about
their changed lives. But they continue to laugh, too. After nurses
said they had to wean Thomas from narcotics, Scott joked: "So, my son's
a drug addict." Thomas will likely remain in the hospital for a few
more days and begin chemotherapy before he goes home. Dr. Weprin said
the family faces years of treatment. "These life-altering events
can occur anytime. Never have that attitude, 'It's never going to
happen to me,' " he said. "That's what people need to understand." How to help: To donate to the Thomas Bickle Fund, go to www.thomasbickle.com Or
donate at any Wells Fargo branch to Thomas Bickle, son of Scott and
Sarah Bickle, account No. 1301. E-mail kbreen@dallasnews.com
here are some fun phone pics to catch up on project 365.
