Sada went on her first "dive" today... and took Daddy along as her official buddy. Our friends have an amazing clinic in Provo called the Now I Can Physical Therapy Center at www.nowican.org with some very unique therapies and techniques that work very VERY well. One of those is a hyperbaric chamber that helps to oxygenate the body, speeding healing for tissue and nerves. The pressurized oxygen helps decrease swelling in the brain and push extra oxygen into the hypoxic (O2 deprived) areas.
So, she crawled into the chamber and Jeff squeezed in beside her, the tech filled it up and they watched a movie for an hour while they were magically lowered 10' below sea level without having to leave Happy Valley. Sada will be playing diver twice a day for about the next two weeks. By the time this is over, she's going to be an expert at equalizing her ears before she ever gets scuba certified! (Jeff might have to take in a tank or two just to get his nitrogen fix.)
Tuesday, December 30, 2008
Monday, December 29, 2008
Sada's off all meds and still hasn't had any pain since the first 12 hours. No, luck has nothing to do with it. Four years of medical school did help a bit. Ready for the great reveal - what does Dr. Daddy have in his magic little black bag?
1. Arnica 200C - the number one homeopathic for any kind of trauma or bruising, both of which occur in surgery. The anesthesiologist got a 30-second explanation of what homeopathics are and said, "It's not going to hurt, so may as well give it to her." Jeff promptly popped 3 little sugar pellets into Sada's mouth as they were wheeling her away to the operating room. She also got another 3 pellets every 2-3 hours (unless asleep) for the rest of her hospital stay. And she never did get black and blue on her neck like they all expected. Of course, that could also be because of...
2. Magnets - medicinal magnets help lower inflammation, which reduces pain, and also help with spasms or cramps. Amber got through having all her wisdom teeth out without any pain-killers, including aspirin or ibuprofen, by keeping north-field magnets against her cheeks for two days. And just to prove it wasn't a fluke, a few other cousins pulled off the same trick. We have a little pouch with 5 magnets sewn into it, and keeping that on Sada's neck right over the incisions stopped most discomfort. Every time she said her neck was sore we'd check the placement and each time the magnets had slipped down too low.
3. High Anti-Oxidants - Anytime the body is under stress, free radicals (unfulfilled oxygen molecules) start stealing electrons away from other healthy cells. Your 2 year-old has a toy that the 3 year-old wants. 3 year-old takes the toy away and 2 year-old gets cranky. 5 year-old wants the toy and steals it from 3 year-old, starting a screamfest in the kitchen. 7 year-old takes toy and runs, slamming door on 5 year-old's fingers, and the house is full of furious wails. No one's happy until mama comes and gives something to everyone to get their attention off of what just happened. Mega doses of anti-oxidants (like 2-5 grams per day of vitamin C) keep the free radicals happy by giving them extra electrons so no one has to get inflamed or hot and cranky, lowering all cells' stress levels and leaving us with a happy immune system.
4. No Sugar - that sweet little substance causes inflammation in every single cell of the body. Most of the time, our bodies can handle the stress and we don't even notice. When you're run down, it can throw you for a loop. A nurse offered Sada a couple of chocolates on Christmas Eve, and our doctor-in-training did a marvelous job of explaining why she'd love to have them but wasn't going to eat them while in the hospital because of their "inflammatory effects". That was followed by a very nice 5 minute conversation about honey and maple syrup comparisons (not as processed so your body can metabolize them slower and more thoroughly).
There were a few more odds and ends thrown in, but for as simple as that recipe is, it did the trick above and beyond what we expected. The only option with a brain tumor is surgery... but mix in a little alternative medicine and it's a whole lot easier to recover and get back to life.
1. Arnica 200C - the number one homeopathic for any kind of trauma or bruising, both of which occur in surgery. The anesthesiologist got a 30-second explanation of what homeopathics are and said, "It's not going to hurt, so may as well give it to her." Jeff promptly popped 3 little sugar pellets into Sada's mouth as they were wheeling her away to the operating room. She also got another 3 pellets every 2-3 hours (unless asleep) for the rest of her hospital stay. And she never did get black and blue on her neck like they all expected. Of course, that could also be because of...
2. Magnets - medicinal magnets help lower inflammation, which reduces pain, and also help with spasms or cramps. Amber got through having all her wisdom teeth out without any pain-killers, including aspirin or ibuprofen, by keeping north-field magnets against her cheeks for two days. And just to prove it wasn't a fluke, a few other cousins pulled off the same trick. We have a little pouch with 5 magnets sewn into it, and keeping that on Sada's neck right over the incisions stopped most discomfort. Every time she said her neck was sore we'd check the placement and each time the magnets had slipped down too low.
3. High Anti-Oxidants - Anytime the body is under stress, free radicals (unfulfilled oxygen molecules) start stealing electrons away from other healthy cells. Your 2 year-old has a toy that the 3 year-old wants. 3 year-old takes the toy away and 2 year-old gets cranky. 5 year-old wants the toy and steals it from 3 year-old, starting a screamfest in the kitchen. 7 year-old takes toy and runs, slamming door on 5 year-old's fingers, and the house is full of furious wails. No one's happy until mama comes and gives something to everyone to get their attention off of what just happened. Mega doses of anti-oxidants (like 2-5 grams per day of vitamin C) keep the free radicals happy by giving them extra electrons so no one has to get inflamed or hot and cranky, lowering all cells' stress levels and leaving us with a happy immune system.
4. No Sugar - that sweet little substance causes inflammation in every single cell of the body. Most of the time, our bodies can handle the stress and we don't even notice. When you're run down, it can throw you for a loop. A nurse offered Sada a couple of chocolates on Christmas Eve, and our doctor-in-training did a marvelous job of explaining why she'd love to have them but wasn't going to eat them while in the hospital because of their "inflammatory effects". That was followed by a very nice 5 minute conversation about honey and maple syrup comparisons (not as processed so your body can metabolize them slower and more thoroughly).
There were a few more odds and ends thrown in, but for as simple as that recipe is, it did the trick above and beyond what we expected. The only option with a brain tumor is surgery... but mix in a little alternative medicine and it's a whole lot easier to recover and get back to life.
Sunday, December 28, 2008
It's good to be home. Sada's personality is definitely returning to normal - we played board games for three hours today and she figured out all kinds of strategies to guarantee she won, then explained them all to us losers after worthily beating all opponents to the ground. The games were in lieu of reading her usual 5-7 books per day; after 2 books this afternoon, her eyes were "bouncing" and she couldn't focus on the words. Even more than the balance/vertigo, not being able to read anything and everything has been the hardest adjustment so far. For a girl who can devour a 120 page book in under 15 minutes, cutting reading time down to an hour a day to lower stress on her right eye is akin to taking the stockings down on Christmas Eve. There's something about it that's not quite right.
We had an official Christmas dinner at Grandpa and Grandma's tonight, since the middle kids are staying over there this week so Sada can have a few extra days to literally get back on her feet. Keeping the baby here is more of a therapy than anything else, since Sada pushes herself to help get the diapers, pick out clothes, burp the babybug, and all the other babysitting requirements any 9 year old needs to master. The only new rule implemented so far is No Walking While Carrying ANYTHING. That will hopefully prevent any major tumbles for her and heart attacks for the mama.
Saturday morning before we checked out of the hospital, she was washing her hands and looked up into the mirror. I had just rebraided her hair to leave her stitches exposed so we can keep an eye on them, and her only comment was, "My eyes really look strange." Tonight before bed she said she didn't like how people stared at her... and we only had our family at dinner tonight. Even I have to keep reminding myself that she's still my little girl inside, with the same 9 going on 21 brain that blasted her way past at least one nurse explaining exactly what EVD meant and what it did after the nurse couldn't remember what the acronym stood for. Her eyes are moving very independently - not because of lazy eye, but because her brain is unable to control them normally until swelling goes down, which could easily be a year. I want to wrap my arms around her and never let her go, but apparently this is one lesson she gets to learn. Jeff told her a lot of people are going to be curious because she looks different now, even if she doesn't act different. And if she's uncomfortable, it's ok to say "If you have any questions about my eye, ask." She smiled, gave hugs and went right to sleep. Jeff and I are learning grief comes in lots of levels and even the heartache of a lesser degree still stings.
We had an official Christmas dinner at Grandpa and Grandma's tonight, since the middle kids are staying over there this week so Sada can have a few extra days to literally get back on her feet. Keeping the baby here is more of a therapy than anything else, since Sada pushes herself to help get the diapers, pick out clothes, burp the babybug, and all the other babysitting requirements any 9 year old needs to master. The only new rule implemented so far is No Walking While Carrying ANYTHING. That will hopefully prevent any major tumbles for her and heart attacks for the mama.
Saturday morning before we checked out of the hospital, she was washing her hands and looked up into the mirror. I had just rebraided her hair to leave her stitches exposed so we can keep an eye on them, and her only comment was, "My eyes really look strange." Tonight before bed she said she didn't like how people stared at her... and we only had our family at dinner tonight. Even I have to keep reminding myself that she's still my little girl inside, with the same 9 going on 21 brain that blasted her way past at least one nurse explaining exactly what EVD meant and what it did after the nurse couldn't remember what the acronym stood for. Her eyes are moving very independently - not because of lazy eye, but because her brain is unable to control them normally until swelling goes down, which could easily be a year. I want to wrap my arms around her and never let her go, but apparently this is one lesson she gets to learn. Jeff told her a lot of people are going to be curious because she looks different now, even if she doesn't act different. And if she's uncomfortable, it's ok to say "If you have any questions about my eye, ask." She smiled, gave hugs and went right to sleep. Jeff and I are learning grief comes in lots of levels and even the heartache of a lesser degree still stings.
Saturday, December 27, 2008
No place like home
The hardest part of the hospital stay for Sada has been sleeping on the hospital bed… and tonight she gets to play Sleeping Beauty in her own castle! We’ve been playing a little more this morning and making presents for all the kids at home so they’ll understand what happened this week.
But for the adult version, we’ll turn the time over to Dr. Wright for “Brain Stems 101.”
The brainstem affects 10 of the 12 cranial nerves. Some of the functions the nerves control include eye movement, facial sensory, tongue movement, jaw movement, facial expression, acoustics, and the cardiac and respiratory centers. The brainstem is divided into 3 parts – midbrain, pons, and medulla.
Midbrain – involved in vision, hearing, eye movement, body movement/balance. Nerves from other parts of the brain go through the midbrain and control voluntary motor function.
Pons – controls gross motor skills and sensory analysis. Involved in different levels of consciousness and sleep. Some structures within the pons are linked to the cerebellum, specifically involving movement and posture.
Medulla – maintains vital functions like breathing and heart rate. Controls the cough, gag, swallow, and vomit reflexes.
Almost any pressure on the brainstem affects the cerebellum, which is located in the lower back bulge of the skull. The cerebellum coordinates movement, balance, and posture.
Put a little lump between the two and balance is shot, coordination is gone, and there’s a high likelihood that at least one sensory function will be compromised. In Sada’s case, swallowing went first, with vision changing last Saturday. Since surgery puts pressure on other parts of the brain as well, the original problems may improve immediately due to the pressure relief, while other symptoms develop because of mechanical pressure – surgeons holding back areas while the tumor is removed. Most swelling takes a good 2-3 weeks to decrease enough to determine a baseline for long-term recovery comparisons. Check out http://www.waiting.com/brainfuncthree.html for a few diagrams if you’re a visual learner. And pamper your brainstem today – find a soft pillow or get a neck rub. It works hard for your benefit with very little appreciation!
But for the adult version, we’ll turn the time over to Dr. Wright for “Brain Stems 101.”
The brainstem affects 10 of the 12 cranial nerves. Some of the functions the nerves control include eye movement, facial sensory, tongue movement, jaw movement, facial expression, acoustics, and the cardiac and respiratory centers. The brainstem is divided into 3 parts – midbrain, pons, and medulla.
Midbrain – involved in vision, hearing, eye movement, body movement/balance. Nerves from other parts of the brain go through the midbrain and control voluntary motor function.
Pons – controls gross motor skills and sensory analysis. Involved in different levels of consciousness and sleep. Some structures within the pons are linked to the cerebellum, specifically involving movement and posture.
Medulla – maintains vital functions like breathing and heart rate. Controls the cough, gag, swallow, and vomit reflexes.
Almost any pressure on the brainstem affects the cerebellum, which is located in the lower back bulge of the skull. The cerebellum coordinates movement, balance, and posture.
Put a little lump between the two and balance is shot, coordination is gone, and there’s a high likelihood that at least one sensory function will be compromised. In Sada’s case, swallowing went first, with vision changing last Saturday. Since surgery puts pressure on other parts of the brain as well, the original problems may improve immediately due to the pressure relief, while other symptoms develop because of mechanical pressure – surgeons holding back areas while the tumor is removed. Most swelling takes a good 2-3 weeks to decrease enough to determine a baseline for long-term recovery comparisons. Check out http://www.waiting.com/brainfuncthree.html for a few diagrams if you’re a visual learner. And pamper your brainstem today – find a soft pillow or get a neck rub. It works hard for your benefit with very little appreciation!
Friday, December 26, 2008
Weight Changes
One more note that makes Daddy extremely happy. Last week she weighed in at 63 pounds. Since she had the tumor removed, her appetite has returned! Sada just got off the scale and is now 73 pounds!
Planning the jail break
This morning we had a super tipsy cutie-pie, so the doctor thought it would be great to stay another day and keep a close eye on her. The physical therapists came by to check her out and give her ideas of how to take care of herself without getting hurt, like sitting down to get dressed, turning to look where she’s going before starting to walk, keeping her hands out a little for balance and to hold onto walls, and a few other ideas to help her eyes work together. By this afternoon, Sada’s balance was better and she was walking by herself on long excursions (10-15 feet)around the playroom – foosball is a great incentive to keep your balance. We made her work to win. Looks she will be able to go home tomorrow.
She has been eating like a tiger… so much so that room service called the nursing station and asked them if she was really eating all that food, or if she was ordering for her parents. Unfortunately, we have been “enjoying” the cafeteria (with all the wonderful side effects of mass-produced fast food). It sort of reminds me of the MTC.
The most unique part of this whole saga so far is that Sada hasn’t had any pain medication since Tylenol at 7am the morning after surgery. The doctors think that’s just luck, the nurses are sure Sada’s being a stoic little soldier to please her parents, and we smile and wait until they leave to load her up with homeopathic goodies out of Dr. Daddy’s little black bag. Looks like all that medical school tuition is paying off big time.:-)
She has been eating like a tiger… so much so that room service called the nursing station and asked them if she was really eating all that food, or if she was ordering for her parents. Unfortunately, we have been “enjoying” the cafeteria (with all the wonderful side effects of mass-produced fast food). It sort of reminds me of the MTC.
The most unique part of this whole saga so far is that Sada hasn’t had any pain medication since Tylenol at 7am the morning after surgery. The doctors think that’s just luck, the nurses are sure Sada’s being a stoic little soldier to please her parents, and we smile and wait until they leave to load her up with homeopathic goodies out of Dr. Daddy’s little black bag. Looks like all that medical school tuition is paying off big time.:-)
Thursday, December 25, 2008
Deck the Halls!
Did you know that Santa can find children even in a hospital? So obviously, before vitals, meds, or breakfast, Sada opened her gifts. Her priorities are still completely intact.
Even with the stress and confusion inherent in a hospital stay, Christmas has been properly merry and bright. The doctor ordered a CT scan first thing to make sure her ventricles were draining properly with the EVD clamped. Everything looked good, so the doctor came back and removed the drain. It was quick and easy (aside from a few hairs being yanked). No more IV poles to drag around! She celebrated with cotton candy body paints in a GIGANTICUS 7’ bathtub.
With the NTU down to three staff and three patients, the nurses decided to turn this place into a bed and breakfast/ lunch/ snack service. They set up another game of Christmas Bingo, a paint shop for aspiring artists, and a construction site complete with quick-drying cement to make mosaic paperweights. Downtime was fun with Sada’s favorite movie, “The Ultimate Gift”(which Mom & Dad couldn’t watch because we would have started bawling), and a ride up to the sky bridge to see the blizzard move in over the valley. Sada decided Salt Lake is breathtaking at night in the snow. Objects at a distance are easy to look at because they don’t seem to bounce vertically like anything close – just another lovely side-effect of surgical trauma.
We've always tried to focus on the Savior's birth and service - this year hasn't been any different, we're just on the receiving end of the charity chain. The other kids are happily playing with grandparents, Sada's recovering from what could have been, well, a really bad outcome, and we are dumbfounded by blessings popping up all over. 'Tis the season for miracles - and we are so very grateful.
Even with the stress and confusion inherent in a hospital stay, Christmas has been properly merry and bright. The doctor ordered a CT scan first thing to make sure her ventricles were draining properly with the EVD clamped. Everything looked good, so the doctor came back and removed the drain. It was quick and easy (aside from a few hairs being yanked). No more IV poles to drag around! She celebrated with cotton candy body paints in a GIGANTICUS 7’ bathtub.
With the NTU down to three staff and three patients, the nurses decided to turn this place into a bed and breakfast/ lunch/ snack service. They set up another game of Christmas Bingo, a paint shop for aspiring artists, and a construction site complete with quick-drying cement to make mosaic paperweights. Downtime was fun with Sada’s favorite movie, “The Ultimate Gift”(which Mom & Dad couldn’t watch because we would have started bawling), and a ride up to the sky bridge to see the blizzard move in over the valley. Sada decided Salt Lake is breathtaking at night in the snow. Objects at a distance are easy to look at because they don’t seem to bounce vertically like anything close – just another lovely side-effect of surgical trauma.
We've always tried to focus on the Savior's birth and service - this year hasn't been any different, we're just on the receiving end of the charity chain. The other kids are happily playing with grandparents, Sada's recovering from what could have been, well, a really bad outcome, and we are dumbfounded by blessings popping up all over. 'Tis the season for miracles - and we are so very grateful.
Wednesday, December 24, 2008
Twas the night before Christmas....
Christmas Eve is a very quiet place in the Neuroscience Trauma Unit this year. The nurses decided to switch almost all the patients’ rooms because there were only six kids in a 28 room area. Since they were all spread out at each end of the NTU wing, we were consolidated and all put into the same hub. Tonight there are only four patients, and the plan is that by tomorrow afternoon there will only be two left.
One major benefit of the switch was a 6’ padded bench that lays out into a twin bed… not quite as big as Sada’s, but MUCH better than a reclined chair and a rocker. Sada woke late as the doctors let her sleep in till 8:30 am. The nurses said that Christmas Eve is the beginning of “holiday hours” where everything starts a little later and patients get to sleep in. When the on-call surgeon came in he sped up the treatment plan and clamped the EVD a day early because she didn’t seem to be having any pressure buildup inside the ventricles.
Now that the anti-inflammatory drugs are tapering down, she is much more alert and talkative. She has been practicing turning her head to loosen the neck muscles that were stretched during the surgery. They’re not quite as stiff, but with incisions halfway up the back of her head, she still prefers laying on the soft gel pillows. Jeff is her official “narrator” and has been reading Dragonology Chronicles, which she requests regularly between naps and nurses’ checks. It lets her satisfy her book craving without straining her eyes.
Since she wasn’t as tipsy during her excursions back and forth across the room, she was able to take an adventure into the great outdoors. On Monday, some chain-saw wielding elves carved some ice sculpture of Santa and his flying reindeer out in front of the hospital. So Sada got dressed in her down coat and plenty of blankets and rode her chariot into the 10 degree sunny morning for a bit of fresh air. After a few wheelies, we went on a tour of the playroom and brought back a few holiday plaster decorations to paint. Toothbrush sponges make great paintbrushes, by the way.
She has been a little concerned about how Santa is going to find her, but a kindly nurse told her that he visits every year and there is a very big flat roof with a big X on the top where he can land his sleigh. She also said that Santa may park it next to the X so that LifeFlight will be able to land if necessary. And she has the most important criteria covered - if you don't believe, you won't receive. Time to go to sleep... I think I heard jingle bells outside.
One major benefit of the switch was a 6’ padded bench that lays out into a twin bed… not quite as big as Sada’s, but MUCH better than a reclined chair and a rocker. Sada woke late as the doctors let her sleep in till 8:30 am. The nurses said that Christmas Eve is the beginning of “holiday hours” where everything starts a little later and patients get to sleep in. When the on-call surgeon came in he sped up the treatment plan and clamped the EVD a day early because she didn’t seem to be having any pressure buildup inside the ventricles.
Now that the anti-inflammatory drugs are tapering down, she is much more alert and talkative. She has been practicing turning her head to loosen the neck muscles that were stretched during the surgery. They’re not quite as stiff, but with incisions halfway up the back of her head, she still prefers laying on the soft gel pillows. Jeff is her official “narrator” and has been reading Dragonology Chronicles, which she requests regularly between naps and nurses’ checks. It lets her satisfy her book craving without straining her eyes.
Since she wasn’t as tipsy during her excursions back and forth across the room, she was able to take an adventure into the great outdoors. On Monday, some chain-saw wielding elves carved some ice sculpture of Santa and his flying reindeer out in front of the hospital. So Sada got dressed in her down coat and plenty of blankets and rode her chariot into the 10 degree sunny morning for a bit of fresh air. After a few wheelies, we went on a tour of the playroom and brought back a few holiday plaster decorations to paint. Toothbrush sponges make great paintbrushes, by the way.
She has been a little concerned about how Santa is going to find her, but a kindly nurse told her that he visits every year and there is a very big flat roof with a big X on the top where he can land his sleigh. She also said that Santa may park it next to the X so that LifeFlight will be able to land if necessary. And she has the most important criteria covered - if you don't believe, you won't receive. Time to go to sleep... I think I heard jingle bells outside.
Tuesday, December 23, 2008
It has been busy in the last few days. This morning, the residents did rounds early in the morning and Sada wouldn't wake up (she even had blood drawn without moving). Since she wouldn't wake up, and since she was only 10 hours past emergency brain surgery, they elected to do another CT scan to make sure there weren't any problems post-surgery. She eventually woke up on the way to CT, and the CT scan was just fine.
Her day consists of nurses coming in to check on her, give her various medications, and check her vital signs. Residents come in first thing in the morning (between 6 and 8 am) and then return about 10 with the supervising physician. They do a quick neurological exam and make appropriate changes to her treatment plan. She has a EVD or external ventricular drain which is a tube that goes into her brain to drain it of excess CSF (cerebral spinal fluid). Since the tumor caused her brain to swell, the drain is alowing her brain to drain off the excess fluid. If all goes well, the drain will be turned off tomorrow, and they will see if her brain can take care of the fluid itself.
Her tumor was thought to be one of three kinds of tumors. I like to think of them as good, bad and ugly, although none of them are actually "good". Prior to surgery it was thought to be a type of tumor that can metastasize to the spinal cord. With the MRI of her spine, the metastasis was ruled out.
After surgery the lab ran a pathology report, and the diagnosis changed to another type with the final diagnosis which came today! It is a Juvenile Pilocytic Astrocytoma (JPA) also known as a benign (non-cancerous) tumor. http://www.cumc.columbia.edu/dept/nsg/ct/jpa.html
The tumor grew behind her brainstem and in front of her cerebellum. The brainstem controls things like facial muscles, swallowing and the vomiting reflex. The cerebellum controls balance and how you move in relation to things around you.
Side effects of the surgery: One rare side effect of the surgery is sometimes kids will come out unable to talk. This didn't happen, thankfully. Because of the placement of the tumor, the surgeons put some mechanical pressure on another part of the brain which affects her eyes coordinating movement. That means that each of her eyes now moves independently of each other. This is something that should get better over time in the range of weeks to months.
Since she had lost her vision in the left eye she needed appointment with an eye doctor. After her visit with the ophthalmologist (eye doctor) her vision is returning to that eye. It is only in the central part of her visual field, but is returning slowly. Another symptom of either the tumor or the surgery is that she is very wobbly. She has a hard time keeping her balance. That is part of what the cerebellum does and should get better as she recovers.
As part of the routine with tumors, Sada had a consultation with an oncologist (cancer doctor). This visit was really just to cover all bases because the oncologist agreed with the surgeon that no other treatment was necessary except for regular follow up with the surgeon.
We feel the heavens have showered their blessings upon us. We have seen many miracles - tis the season!
Her day consists of nurses coming in to check on her, give her various medications, and check her vital signs. Residents come in first thing in the morning (between 6 and 8 am) and then return about 10 with the supervising physician. They do a quick neurological exam and make appropriate changes to her treatment plan. She has a EVD or external ventricular drain which is a tube that goes into her brain to drain it of excess CSF (cerebral spinal fluid). Since the tumor caused her brain to swell, the drain is alowing her brain to drain off the excess fluid. If all goes well, the drain will be turned off tomorrow, and they will see if her brain can take care of the fluid itself.
Her tumor was thought to be one of three kinds of tumors. I like to think of them as good, bad and ugly, although none of them are actually "good". Prior to surgery it was thought to be a type of tumor that can metastasize to the spinal cord. With the MRI of her spine, the metastasis was ruled out.
After surgery the lab ran a pathology report, and the diagnosis changed to another type with the final diagnosis which came today! It is a Juvenile Pilocytic Astrocytoma (JPA) also known as a benign (non-cancerous) tumor. http://www.cumc.columbia.edu/dept/nsg/ct/jpa.html
The tumor grew behind her brainstem and in front of her cerebellum. The brainstem controls things like facial muscles, swallowing and the vomiting reflex. The cerebellum controls balance and how you move in relation to things around you.
Side effects of the surgery: One rare side effect of the surgery is sometimes kids will come out unable to talk. This didn't happen, thankfully. Because of the placement of the tumor, the surgeons put some mechanical pressure on another part of the brain which affects her eyes coordinating movement. That means that each of her eyes now moves independently of each other. This is something that should get better over time in the range of weeks to months.
Since she had lost her vision in the left eye she needed appointment with an eye doctor. After her visit with the ophthalmologist (eye doctor) her vision is returning to that eye. It is only in the central part of her visual field, but is returning slowly. Another symptom of either the tumor or the surgery is that she is very wobbly. She has a hard time keeping her balance. That is part of what the cerebellum does and should get better as she recovers.
As part of the routine with tumors, Sada had a consultation with an oncologist (cancer doctor). This visit was really just to cover all bases because the oncologist agreed with the surgeon that no other treatment was necessary except for regular follow up with the surgeon.
We feel the heavens have showered their blessings upon us. We have seen many miracles - tis the season!
Monday, December 22, 2008
Last night Sada came out of surgery doing really well. The surgeon was finally able to come to talk to us at 7:30 tonight, and said the surgery was pretty straightforward. The mass was attached to the brain stem, so they got out most and possibly all of it, but we'll have to wait for a few months for a clear MRI to really see. The first results from pathology look like it's a good case scenario, but we'll know more with the final report, possibly coming in tomorrow but could be after Christmas. She still has the vision loss, either caused by pressure from the increased cerebral spinal or due to the position of the attachment site. Ditto for very poor hand/eye coordination. Both can likely improve in weeks or months, but since every case is so individual, we wait and see. She'll be at Primary Children's until she can sit up, walk without help, and at least take basic care of herself - the doctor is estimating 5-7 days if she keeps progressing. Every nurse who walks in tells us they've been warned that Sada is a bit bright, and she's always translating the medical terminology they use when talking to us to prove she's not about to be ignored. It's really funny to watch them left speechless after she rewords everything into layman's terms. What can I say - she's an amazing, brilliant daughter... must take after her parents :-)
All the extra prayers seem to be working and Jeff & I feel pretty calm considering circumstances. The biggest concern right now is going to be keeping her as healthy as possible. Should be interesting considering we have a houseful of very active kids. The doctors suggested that we quarentine our family as much as possible especially now that RSV and stomach flu have taken off. A lot of you have asked to help out somehow, even though visiting will be out of the question for at least 6-8 weeks. Sada would love fun cards or letters. Jeff & I could especially use a few ready-to-make activities that the younger kids can do without direct supervision. Keeping everyone away from Sada and entertained without being strapped down is probably going to be our biggest challenge.
Thanks again for the support, prayers, and love. And yes, there are angels among us all day and night.
All the extra prayers seem to be working and Jeff & I feel pretty calm considering circumstances. The biggest concern right now is going to be keeping her as healthy as possible. Should be interesting considering we have a houseful of very active kids. The doctors suggested that we quarentine our family as much as possible especially now that RSV and stomach flu have taken off. A lot of you have asked to help out somehow, even though visiting will be out of the question for at least 6-8 weeks. Sada would love fun cards or letters. Jeff & I could especially use a few ready-to-make activities that the younger kids can do without direct supervision. Keeping everyone away from Sada and entertained without being strapped down is probably going to be our biggest challenge.
Thanks again for the support, prayers, and love. And yes, there are angels among us all day and night.
Sunday, December 21, 2008
The Beginning
We've had a wee bit of a kink in our schedule this week. Jeff & I are sitting in Primary Children's waiting room while our oldest is having a brain tumor removed... yeah. Really. As of 11 last night life was normal. Sada woke up at 11:30 and couldn't see anything with her left eye, so we gave her a blessing and headed up to Salt Lake and are now in the middle of a 7 hour operation that Jeff would rather never have been part of his expertise. The tumor is the size of a golf ball, located between the brain stem and cerebellum at the base of the skull. The surgery team does this at least once a month here with the anesthesiologist and lead surgeon doing these exact surgeries for 15+ years each.
Looks like we're going to renegotiate Christmas this year.
It's all perception - our 3rd daughter, Megan, died very unexpectedly when she was almost 4 months old. Next week would be her 6th birthday. Compared to that experience, this is miserable, but very, very survivable. At the very least, Sada's still here to hug.
Keep us in your prayers. Miraculous experiences always follow, and we'll take as many as we can get.
Amber and Jeff
Sada 9, Alexis 7, Megan - working overtime this week, Paige 4, Jason 3, Kyra 4 months
P.S. I was just reading this off before sending, and a group of Young Women looking girls dropped off a 6"round foot tall container of coins and cash and walked out of the waiting room smiling "Merry Christmas." Told you prayers work. I hope tears don't fry my Dad's laptop.
Looks like we're going to renegotiate Christmas this year.
It's all perception - our 3rd daughter, Megan, died very unexpectedly when she was almost 4 months old. Next week would be her 6th birthday. Compared to that experience, this is miserable, but very, very survivable. At the very least, Sada's still here to hug.
Keep us in your prayers. Miraculous experiences always follow, and we'll take as many as we can get.
Amber and Jeff
Sada 9, Alexis 7, Megan - working overtime this week, Paige 4, Jason 3, Kyra 4 months
P.S. I was just reading this off before sending, and a group of Young Women looking girls dropped off a 6"round foot tall container of coins and cash and walked out of the waiting room smiling "Merry Christmas." Told you prayers work. I hope tears don't fry my Dad's laptop.
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