...and we love his itty bitty toes, too.
Sunday, June 6, 2010
Thursday, June 3, 2010
That's my BABY!!!!!
Here's Zachary Aaron Wright!
Only one week late and weighing in at 8 lbs, 20.5" long with lots of dark hair, he's the latest and greatest hearthrob around this house. He already has everyone wrapped around his itty, bitty fingers.
Amber woke up and spent a half hour at the car shop getting parts ordered, came home and rested for a half hour until Jeff left for work, killed an invading army of ants, ran a test kit for a patient down to the office, got home around 12:15, and had a baby at 2:04pm. For future reference, labor is official when the contractions feel like your pelvis is being pried apart. No denying it, just go with the flow. (And get the waterbirth tub filled quick. We made it with 20 minutes to spare :-)
Monday, May 24, 2010
Oncology Report
Another long afternoon at Primary Children's. This time it was to meet the "new" neuro-oncologist who has been there since last spring and helps design protocols for all the brain tumor kids. We waited for an hour, and kept waiting a little longer, then a nurse popped in to let us know that there were actually two neuro-oncologists and we'd be seeing the doctor who's been working at Primary Children's for 20 years. Dr. Bruggers is the same one we talked to last year about this time and was absolutely wonderful.
She came in a few minutes later and spent over an hour explaining what the options are for JPAs - 1. Radiation since Sada's over 10 now, 2. Chemo combinations, 3. Another surgery when needed, and 4. Watch and wait to see how the tumors behave themselves then decide what to do. Right now, JPAs don't really respond across the board to any of the options - depends on the child, the tumor location and a hundred other variables they haven't been able to pinpoint. Sometimes the treatments help and sometimes they slow the growth down until the treatments are finished then the tumors grow like a high-grade tumor. Which means that unless there's a real necessity to try something because surgery isn't an option due to location, the entire brain tumor team - neuro-oncologists and neurosurgeons - would rather wait and see what happens every three months on the MRI than try something else that might have serious long-term side effects without helping the situation.
It was really nice to hear her say she didn't have any suggestions since no one really knows what a "best treatment" is for JPAs. No wonder the learning curve this past year has been so steep... climbing to infinity and beyond is exhausting.
She came in a few minutes later and spent over an hour explaining what the options are for JPAs - 1. Radiation since Sada's over 10 now, 2. Chemo combinations, 3. Another surgery when needed, and 4. Watch and wait to see how the tumors behave themselves then decide what to do. Right now, JPAs don't really respond across the board to any of the options - depends on the child, the tumor location and a hundred other variables they haven't been able to pinpoint. Sometimes the treatments help and sometimes they slow the growth down until the treatments are finished then the tumors grow like a high-grade tumor. Which means that unless there's a real necessity to try something because surgery isn't an option due to location, the entire brain tumor team - neuro-oncologists and neurosurgeons - would rather wait and see what happens every three months on the MRI than try something else that might have serious long-term side effects without helping the situation.
It was really nice to hear her say she didn't have any suggestions since no one really knows what a "best treatment" is for JPAs. No wonder the learning curve this past year has been so steep... climbing to infinity and beyond is exhausting.
Saturday, May 22, 2010
Happy Birthday to Me!
Today was my 11th B-day! I got a secret agent spy kit, a T-shirt, two pairs of jeans, an interactive around the world, a world almanac, a "Giant Pipe Cleaner Party," and a Flip 'n Stack Tiki Island game. We had a bubble fiesta and shot off soda geysers. It was FUN! I wonder what I'll do next year. . .
Tuesday, May 11, 2010
Pathology's good!
After getting out all the visible tumors, the neurosurgeon sent samples of each into two different pathology labs. All 4 tumors came back as grade 1 Juvenile Pilocytic Astrocytomas . Broken down: cancers are graded between 1 - 4, depending on the spread and rate of growth, with grade 4 meaning it has spread to other body systems and is growing aggressively.
Sada's first big tumor was a JPA, too, so luckily the cells haven't differentiated to something else. They also haven't travelled down her spinal cord yet, so we're still at grade 1. The neurosurgeon was really wondering if the top tumor was a combination of different types of cells because there were two textures that were obviously different while he was removing it. But since everything came back the same, it means oncology will still reject us, we're back on the "watch and wait" plan through neurosurgery to see if there is more regrowth, and Dr. Daddy can keep refining her protocols until she can go a year between MRIs. A new scan every 2-3 months gets old (and expensive) really fast, in spite of the in-house movies and prizes.
Sada's first big tumor was a JPA, too, so luckily the cells haven't differentiated to something else. They also haven't travelled down her spinal cord yet, so we're still at grade 1. The neurosurgeon was really wondering if the top tumor was a combination of different types of cells because there were two textures that were obviously different while he was removing it. But since everything came back the same, it means oncology will still reject us, we're back on the "watch and wait" plan through neurosurgery to see if there is more regrowth, and Dr. Daddy can keep refining her protocols until she can go a year between MRIs. A new scan every 2-3 months gets old (and expensive) really fast, in spite of the in-house movies and prizes.
Monday, May 10, 2010
Photo Recap of the Best Parts of the Last Week
Tuesday morning: Lizzie, the hospital buddy, with a bandaid over her IV site, getting prepped for surgery. Sada was ready to go, too, hangng out in the Same Day surgery waiting room.
Sada also had 10 foam Cheerios stuck to her head to help map where the tumors were on the MRI. In surgery they use the same stickers to locate the tumors without having to do any exploratory surgery.
Wednesday morning: Post-op MRI to see if there is any bleeding or unusual swelling around the operation site.
Thursday afternoon: Daisy, a volunteer dog, came by to see if there were any kids around willing to blow bubbles for her - she really liked how they tasted.
Friday afternoon: Sada finally felt good enough in the third floor playroom to stand up at the foosball table and beat Mom with a score of 2 to 1 .
Saturday: Kabooms, kaflashes and kabubbles everywhere while the volcano exploded all over in an explosion of color. Did you know that it makes a disaster if you don't spray the vinegar right into the crater?
Sunday afternoon: Playing a song is fun to do, fun to do, to do to do... even after brain surgery. Sada was passing time waiting for her lunch to arrive and discharge papers to be processed. In spite of all the fun, she was even more ready than Mom and Dad to get back home!
Sunday, May 9, 2010
Happy Mother's Day
Sometimes there are more appreciated things in life than flowers, chocolates, and promises that are never intended to be kept. Things like tucking a tired bug into her own bed, in her own pajamas, and knowing no one will be coming in to check vitals in an hour and a half.
William Black (Talitha's dad www.talithablack.blogspot.com) invited us to church services this morning. Primary Children's has a branch that meets for a half-hour every Sunday. It consisted of a handful of kids hooked up to IVs and about 40 parents from different wings of the hospital. There were 9 people wearing ties and black pants - the branch presidency and the bretheren preparing and passing the sacrament. The rest of us followed the "Come as you are" instructions pretty literally. It was nice to feel the spirit, especially during the prayers and testimonies that reiterated over and over "Thy will be done." That's one thing we've learned over the past few years. Pray like everything depends on the Lord, work like it all depends on you, and He will make up for the discrepencies that are bound to show up.
We got the ok to be discharged this afternoon after Dr. Kestle came back in to do a final check on Sada and let us know the next MRI will be scheduled 3 months out. He reviewed where the tumors were (three growing from the brainstem and one up high) and promised to send a copy of the pathology report when it gets back.
Right before we left, Dr. Daddy tracked down a non-wheely chair (harder than it sounds in a hospital) and put up Sada's ceiling tile in the Neurotrauma Unit hallway outside the hydrotherapy room where lots of kids will get to enjoy it. Room service would send up little bendy aliens at breakfast each day, and if Sada asked nicely, they'd send one up with each meal she ordered. In honor of the gaggle of aliens she came home with, she decided to make one that could hang out at the hospital forever. It turned out kind of adorable!
William Black (Talitha's dad www.talithablack.blogspot.com) invited us to church services this morning. Primary Children's has a branch that meets for a half-hour every Sunday. It consisted of a handful of kids hooked up to IVs and about 40 parents from different wings of the hospital. There were 9 people wearing ties and black pants - the branch presidency and the bretheren preparing and passing the sacrament. The rest of us followed the "Come as you are" instructions pretty literally. It was nice to feel the spirit, especially during the prayers and testimonies that reiterated over and over "Thy will be done." That's one thing we've learned over the past few years. Pray like everything depends on the Lord, work like it all depends on you, and He will make up for the discrepencies that are bound to show up.
We got the ok to be discharged this afternoon after Dr. Kestle came back in to do a final check on Sada and let us know the next MRI will be scheduled 3 months out. He reviewed where the tumors were (three growing from the brainstem and one up high) and promised to send a copy of the pathology report when it gets back.
Right before we left, Dr. Daddy tracked down a non-wheely chair (harder than it sounds in a hospital) and put up Sada's ceiling tile in the Neurotrauma Unit hallway outside the hydrotherapy room where lots of kids will get to enjoy it. Room service would send up little bendy aliens at breakfast each day, and if Sada asked nicely, they'd send one up with each meal she ordered. In honor of the gaggle of aliens she came home with, she decided to make one that could hang out at the hospital forever. It turned out kind of adorable!
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