Monday, January 31, 2011
Sunday, January 30, 2011
chemo
Zoe's first round of chemo seemed to go pretty well, but she has had a few side effects. When I walked in her room this morning, the first thing she said was, "Momma, please make the pain stop..." Of course that hurt my heart... Her leg was apparently hurting her - but that isn't necessarily a chemo issue. She has also been complaining today of jaw pain, which is a very common side effect of one of the drugs she's taking. Nausea hasn't seemed to be a big issue yet. Zoe's chest/shoulder pain is subsiding a bit except for when she and her dad had a wrestling match this morning :)
a week in pictures
Even though Z didn't feel great this week, she still found energy for one of her favorite activities - "Suuuupo Gowooooo" -- aka Super Girl
Breathing treatments...
Vitals before surgery...
Waiting for surgery
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| Sporting her new port - all the external junk is now gone and she just has a big lump under her skin. |
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| We were banished to the isolation room for chemo because we were coughing, sniffling messes. The office staff was probably so glad when our germ-laden family left. |
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| Z playing legos while getting chemo. |
The "m" word
During another half-sleeping night, I was having semi-conscious nightmares about the "m" word - malignant... On the day of Zoe's surgery Sean and I glanced at her medical chart and in big letters it said malignant brain tumor (but brain tumor was some fancy term). This wouldn't have phased us much except for the fact that three separate institutions had the word malignant on her paperwork. (Fairfax hospital, Children's hospital in DC, and Children's hospital in Philly) Although Zoe's tumor can't be biopsied, we've been told several times that this type of tumor is likely benign... but why in the world do they keep writing malignant??!!!
Thursday, January 27, 2011
Thank you, morphine
Surgery went ok today. Z was/is in a bit of pain - morphine was a lucky charm in the hospital. Too bad we don't have those tricks here at home. Thank you all for your continued support.
Wednesday, January 26, 2011
Ready or not...
We went to the oncologist today - he said we can go ahead with surgery tomorrow and chemo Friday.
Sunday, January 23, 2011
surgery postponed
After another trip to instacare, the doctor and surgeon decided that Zoe will not be having surgery tomorrow. The poor kid can't quit coughing! Hopefully after a few more breathing treatments and some antibiotics she'll be ready for surgery in a couple days.
Saturday, January 22, 2011
it's really happening...
Zoe is scheduled for surgery on Monday to install her mediport and she will begin chemo on Tuesday. This all still seems very surreal...
The drugs Carboplatin and Vincristine will be used for chemo. Zoe will have 10 weeks of treatment and will then be evaluated to see if treatment has stopped the tumor growth or restored some vision. If so, she will continue 4 weeks on and 3 weeks off for one very long year. We are grateful that she will be able to have out-patient treatment. If Zoe gets sick she will be hospitalized, but otherwise we get to stay at home.
The drugs Carboplatin and Vincristine will be used for chemo. Zoe will have 10 weeks of treatment and will then be evaluated to see if treatment has stopped the tumor growth or restored some vision. If so, she will continue 4 weeks on and 3 weeks off for one very long year. We are grateful that she will be able to have out-patient treatment. If Zoe gets sick she will be hospitalized, but otherwise we get to stay at home.
miracles...
Last week our church congregation participated in a special fast for Zoe - in the past, I have witnessed the power that comes from collective fasting. I know it can work miracles... I believe in miracles - I always have... It is an interesting feeling to hope for a miracle for my own child.
In my scripture study this week I read about Christ's miracles and the following account in the New Testament was significant to me...
Luke 7 - The centurion's servant was about to die... The centurion approached Jesus and said, "Lord, trouble not thyself; for I am not worthy that thou shouldest enter under my roof. Wherefore, neither thought I myself worthy to come unto thee: but say in a word, and my servant shall be healed." The centurion had complete faith that Christ COULD heal his servant... he didn't feel worthy to ask for this miracle, but for the sake of his servant, he asked... and his servant was healed.
I know that if it is the Lord's will, Zoe can regain some eyesight. This may not be the Lord's will and we can accept that... but we are praying for a miracle.
In my scripture study this week I read about Christ's miracles and the following account in the New Testament was significant to me...
Luke 7 - The centurion's servant was about to die... The centurion approached Jesus and said, "Lord, trouble not thyself; for I am not worthy that thou shouldest enter under my roof. Wherefore, neither thought I myself worthy to come unto thee: but say in a word, and my servant shall be healed." The centurion had complete faith that Christ COULD heal his servant... he didn't feel worthy to ask for this miracle, but for the sake of his servant, he asked... and his servant was healed.
I know that if it is the Lord's will, Zoe can regain some eyesight. This may not be the Lord's will and we can accept that... but we are praying for a miracle.
pretend play...
It's been really interesting to see how Zoe's pretend play has been influenced by the events of the past week... Sean and I have been given many "shots," as Zoe pinches our arm and says it will only hurt for a second. We've also had our blood pressure taken as Zoe squeezes our arm and mimics what the nurses say, assuring us that it is "just like a little hug on your arm..." My favorite is the eye tests - she loves covering up one eye and then having us identify which toy or how many fingers she's holding up. I have even been given a "blessing" from Bucky the Beaver - one of Zoe's Littlest Pet Shop toys :)
Philadelphia
Thursday the 20th was a marathon day... We got up at 3 AM and got on the road for Philly at 3:30 to make a 7:30 appointment with Dr. Grant Liu, a neuro-opthalmologist. Dr. Liu is considered an international expert on optic gliomas. Dr. Liu is quite confident that the tumor growth as well as the vision loss have happened quite rapidly - this goes against the general characteristics of optic gliomas, as they are considered to be slow growing tumors. I'm not sure we will ever know how long the tumor has been growing, but I also feel strongly that Zoe's vision loss began happening in the last two months. The visit with Dr. Liu gave us hope of some of Zoe's vision returning. In his experience, 30% of patients that have lost vision within the last six months have had slight positive changes in vision after a round of chemotherapy.
After hanging out in the hospital for several hours, we met with Dr. Phillips, a pediatric neuro-oncologist. Dr. Peter Phillips was in agreement of moving forward with chemotherapy. It brings us a lot of peace and confidence moving forward with this decision after having several experts agree that this is the best way forward - for now... Dr. Phillips made it clear that even after chemotherapy we can expect Zoe's tumor will begin growing again at some point down the road. We will constantly need to monitor and reassess how to treat the problem. For now, the goal is to prolong surgery, protect the vision in her left eye, and possibly restore some of the vision in her right eye.
After hanging out in the hospital for several hours, we met with Dr. Phillips, a pediatric neuro-oncologist. Dr. Peter Phillips was in agreement of moving forward with chemotherapy. It brings us a lot of peace and confidence moving forward with this decision after having several experts agree that this is the best way forward - for now... Dr. Phillips made it clear that even after chemotherapy we can expect Zoe's tumor will begin growing again at some point down the road. We will constantly need to monitor and reassess how to treat the problem. For now, the goal is to prolong surgery, protect the vision in her left eye, and possibly restore some of the vision in her right eye.
Sunday, January 16, 2011
gratitude...
We have felt a tremendous amount of love and support this week... Thank you all for the e-mails, visits, dinners, and especially your thoughts and prayers on Zoe's behalf. We believe in the power of prayer - we know that not everyone does - so we will take thoughts, energy, karma, whatever works for you... We have truly felt bouyed up. Thank you.
flashbacks...
In the last couple days, I've had a couple significant "flashbacks"...
In the middle of the night on Thursday, I remembered an interaction I had with Zoe about three weeks earlier. One morning while we were playing at home, Zoe started hitting her head by her eye and saying, "It's not working - my eye is not working!" -- The "it's not working" phrase is what she says anytime she's frustrated with something - she says it often so I didn't take it literally meaning that her eye was not working. (Up to this point, we had no reason to think that she was having trouble seeing things even though her eye had changed.) I sat her on my lap and looked into her eye. Not seeing anything that would be impacting her vision, I told her it would be ok and we started playing again. In retrospect, I clearly missed a huge clue... makes me sick.
As I was folding a massive mound of laundry last night, I remembered a dream I had a few weeks ago. I had told Sean about the dream and we both thought it was really neat, but didn't know what meaning to attach to it...
In the dream, my sister Robyn was bending down reaching her arms outward to Zoe who was happily running towards her. Robyn looked so beautiful and she and Zoe were so happy to see each other. Zoe was running into her arms, but right before she reached Robyn she stopped running and didn't go to her. Then the dream ended...
My sister Robyn died a little over a year ago from breast cancer. After the events of this past week, this dream brought us a great deal of peace... just a reassurance that Zoe is staying right here with us...
In the middle of the night on Thursday, I remembered an interaction I had with Zoe about three weeks earlier. One morning while we were playing at home, Zoe started hitting her head by her eye and saying, "It's not working - my eye is not working!" -- The "it's not working" phrase is what she says anytime she's frustrated with something - she says it often so I didn't take it literally meaning that her eye was not working. (Up to this point, we had no reason to think that she was having trouble seeing things even though her eye had changed.) I sat her on my lap and looked into her eye. Not seeing anything that would be impacting her vision, I told her it would be ok and we started playing again. In retrospect, I clearly missed a huge clue... makes me sick.
As I was folding a massive mound of laundry last night, I remembered a dream I had a few weeks ago. I had told Sean about the dream and we both thought it was really neat, but didn't know what meaning to attach to it...
In the dream, my sister Robyn was bending down reaching her arms outward to Zoe who was happily running towards her. Robyn looked so beautiful and she and Zoe were so happy to see each other. Zoe was running into her arms, but right before she reached Robyn she stopped running and didn't go to her. Then the dream ended...
My sister Robyn died a little over a year ago from breast cancer. After the events of this past week, this dream brought us a great deal of peace... just a reassurance that Zoe is staying right here with us...
perspective...
On the 11th, we felt like our world crashed in around us... we were heartbroken and worried.
It is amazing what a few days in the pediatric oncology hospital unit can do for your perspective. We suddenly felt grateful that our child had only a brain tumor, that her tumor was benign and that she would live through this, that she did not have to live in the hospital for months at a time, and that she still had vision in one of her eyes.
It is amazing what a few days in the pediatric oncology hospital unit can do for your perspective. We suddenly felt grateful that our child had only a brain tumor, that her tumor was benign and that she would live through this, that she did not have to live in the hospital for months at a time, and that she still had vision in one of her eyes.
the diagnosis and the way forward...
A CT scan was performed the afternoon of the 11th and clearly showed a tumor behind Zoe's eye. Because CT scans don't give very detailed images, we were left with little information - but enough information to be incredibly worried. It was a long, sleepless night...
The next morning, Zoe was able to have an MRI test. The results showed a large tumor which is most likely an Optic Glioma. We are told that this type of tumor is generally benign and slow growing. (However, to me, it doesn't make much sense that a "slow-growing" tumor can grow into a large tumor with a maximum time of three years....???) The tumor is now confined only to the optical orbit and still has a bit of space before reaching the optic chiasm, which would then impact the vision in both eyes. The tumor is supposedly beginning to push into the area toward the brain, but we are told that it is unlikely that it will enter that area further. We felt incredibly blessed to hear words like benign and slow-growing...
On Friday, we met with two incredible doctors who explained the following three options...
1. SIT AND WAIT = The idea that what is done is done - the eyesight in the right eye is already gone... We can monitor the supposedly "slow-growing" tumor every three months and then make decisions as we need to.
2. SURGERY = The pediatric neurosurgeon said that surgery would entail removal of the eyeball as well as the optic nerve. Surgery always has its risks... Also, because Zoe's face and her eye socket will grow and change so much over the next several years, a prosthetic eye would need to always be revised. This also carries risks and issues related to the face not growing properly.
3. CHEMOTHERAPY = Although the tumor is benign, chemo is being considered an option to do the following: 1. "Soften" the tumor in an attempt to take pressure off the eyeball and lessen the bulge. 2. Stop the growth of the tumor - chemo will not make the tumor disappear, but can keep it from growing toward the chiasm. 3. If vision is still "available" there is a 1/10 chance that chemo can perhaps restore some vision.
About "available or useful" vision... The Neuro-Opthalmologist said that if someone were to hold a gun to his head and ask if Zoe had ANY vision in her right eye he would say no. All of the tests show that she is blind. However, when he looked directly at the optic nerve, he saw that it was severely damaged but not dead yet! He seemed very surprised at this finding. As soon as he said that the nerve was not yet dead, Sean and I both had a very powerful and direct impression that chemo is the way forward. Nobody wants to submit their child to chemo... it makes me absolutely sick to think of doing this. However, neither of us can deny what we felt... So, unless we receive some other impression or unless other doctors completely disagree with her current diagnosis or the way forward, it looks like Zoe will begin chemo very soon. My gut tells me that although the tumor may have been there for a while, the vision loss has happened very quickly. We want to move forward as soon as possible while there is hope that the optic nerve is still somewhat alive.
Please, please pray that we will be guided in our decisions...
The next morning, Zoe was able to have an MRI test. The results showed a large tumor which is most likely an Optic Glioma. We are told that this type of tumor is generally benign and slow growing. (However, to me, it doesn't make much sense that a "slow-growing" tumor can grow into a large tumor with a maximum time of three years....???) The tumor is now confined only to the optical orbit and still has a bit of space before reaching the optic chiasm, which would then impact the vision in both eyes. The tumor is supposedly beginning to push into the area toward the brain, but we are told that it is unlikely that it will enter that area further. We felt incredibly blessed to hear words like benign and slow-growing...
On Friday, we met with two incredible doctors who explained the following three options...
1. SIT AND WAIT = The idea that what is done is done - the eyesight in the right eye is already gone... We can monitor the supposedly "slow-growing" tumor every three months and then make decisions as we need to.
2. SURGERY = The pediatric neurosurgeon said that surgery would entail removal of the eyeball as well as the optic nerve. Surgery always has its risks... Also, because Zoe's face and her eye socket will grow and change so much over the next several years, a prosthetic eye would need to always be revised. This also carries risks and issues related to the face not growing properly.
3. CHEMOTHERAPY = Although the tumor is benign, chemo is being considered an option to do the following: 1. "Soften" the tumor in an attempt to take pressure off the eyeball and lessen the bulge. 2. Stop the growth of the tumor - chemo will not make the tumor disappear, but can keep it from growing toward the chiasm. 3. If vision is still "available" there is a 1/10 chance that chemo can perhaps restore some vision.
About "available or useful" vision... The Neuro-Opthalmologist said that if someone were to hold a gun to his head and ask if Zoe had ANY vision in her right eye he would say no. All of the tests show that she is blind. However, when he looked directly at the optic nerve, he saw that it was severely damaged but not dead yet! He seemed very surprised at this finding. As soon as he said that the nerve was not yet dead, Sean and I both had a very powerful and direct impression that chemo is the way forward. Nobody wants to submit their child to chemo... it makes me absolutely sick to think of doing this. However, neither of us can deny what we felt... So, unless we receive some other impression or unless other doctors completely disagree with her current diagnosis or the way forward, it looks like Zoe will begin chemo very soon. My gut tells me that although the tumor may have been there for a while, the vision loss has happened very quickly. We want to move forward as soon as possible while there is hope that the optic nerve is still somewhat alive.
Please, please pray that we will be guided in our decisions...
the symptoms...
While we were in Utah in October, I noticed that Zoe's eye began to look "different" sometimes when she focused on me - the eyeball just seemed to turn inward and upward a bit. Not all the time, just occasionally. I didn't think much about it and initially didn't even pay close attention to whether it was the right or left eye. Then I began to notice it more regularly and realized it was her right eye.
Also, while we were in Utah we compared Zoe's gross motor skills to those of her same-aged female cousins... they were much more advanced than she was with things like climbing. (We have always had concerns with what we thought were gross motor issues and Zoe has received physical therapy for various things the past year and a half.) We recently tried to make Zoe practice going down stairs, leading with her right foot - she couldn't do it... but we still made her try... Little did we know that she was blind in her right eye, lacked depth perception, and couldn't see where to put her foot. (kick in the gut)
Some time after getting back to Virginia in November, we noticed that the shape of Zoe's eye socket had seemed to change slightly and her right eye began to bulge out a little bit. Shortly after, Zoe started to complain of headaches - something she hasn't ever done before. For four days in a row the headache was in the same place - by her bulging right eye.
As soon as the headaches started happening, we really began to get concerned. Sean's younger brother had a brain tumor when he was little and things were sounding eerily familiar. We felt like hypochondriac parents but knew we needed to have things checked out. We met with Z's wonderful pediatrician on Friday, January 7th. We are so, so grateful that he didn't dismiss our concerns as some doctors would likely do. He scheduled an appointment for us to meet with the opthalmologist on Tuesday the 11th (the 11th was Sean's birthday - it was a heck of a birthday!).
I went to the opthalmologist thinking they may tell me my kid had lazy eye or something - not a big deal... The technician met with us first, asking me the history of concerns and then did an initial eye test. After covering Zoe's left eye, the technician projected a picture about two feet tall onto the wall and asked Zoe to tell her what it was. Zoe said she couldn't see it. My response was, "Zoe you need to cooperate. Just pay attention. Look at the picture in front of you - tell her what it is..." (again, kick in the gut) After a couple more attempts, still no luck. The technician said, "She can't see them, mom." I felt sick, but didn't really grasp what was going on yet - I just figured that she had really bad eye sight in that eye. So... we met with the opthalmologist... same test, same response. When HE told me that Zoe could not see anything I lost it... How could I miss the fact that she had no vision in one of her eyes? I'm with her constantly - how could I miss that? Then came the next test... they dilated her eyes so the opthalmologist could look at the optic nerve and into the back of her eye. He could tell that something was on the optic nerve and pressing into her eyeball. He sent us directly to the hospital...
Also, while we were in Utah we compared Zoe's gross motor skills to those of her same-aged female cousins... they were much more advanced than she was with things like climbing. (We have always had concerns with what we thought were gross motor issues and Zoe has received physical therapy for various things the past year and a half.) We recently tried to make Zoe practice going down stairs, leading with her right foot - she couldn't do it... but we still made her try... Little did we know that she was blind in her right eye, lacked depth perception, and couldn't see where to put her foot. (kick in the gut)
Some time after getting back to Virginia in November, we noticed that the shape of Zoe's eye socket had seemed to change slightly and her right eye began to bulge out a little bit. Shortly after, Zoe started to complain of headaches - something she hasn't ever done before. For four days in a row the headache was in the same place - by her bulging right eye.
As soon as the headaches started happening, we really began to get concerned. Sean's younger brother had a brain tumor when he was little and things were sounding eerily familiar. We felt like hypochondriac parents but knew we needed to have things checked out. We met with Z's wonderful pediatrician on Friday, January 7th. We are so, so grateful that he didn't dismiss our concerns as some doctors would likely do. He scheduled an appointment for us to meet with the opthalmologist on Tuesday the 11th (the 11th was Sean's birthday - it was a heck of a birthday!).
I went to the opthalmologist thinking they may tell me my kid had lazy eye or something - not a big deal... The technician met with us first, asking me the history of concerns and then did an initial eye test. After covering Zoe's left eye, the technician projected a picture about two feet tall onto the wall and asked Zoe to tell her what it was. Zoe said she couldn't see it. My response was, "Zoe you need to cooperate. Just pay attention. Look at the picture in front of you - tell her what it is..." (again, kick in the gut) After a couple more attempts, still no luck. The technician said, "She can't see them, mom." I felt sick, but didn't really grasp what was going on yet - I just figured that she had really bad eye sight in that eye. So... we met with the opthalmologist... same test, same response. When HE told me that Zoe could not see anything I lost it... How could I miss the fact that she had no vision in one of her eyes? I'm with her constantly - how could I miss that? Then came the next test... they dilated her eyes so the opthalmologist could look at the optic nerve and into the back of her eye. He could tell that something was on the optic nerve and pressing into her eyeball. He sent us directly to the hospital...
Zoe... the Greek word for LIFE
Dear Zoe,
In the Greek language, the word "zoe" is the ancient as well as the modern word for "LIFE." From the beginning of your life, you have had a tenacious spirit and you've made it through some difficult times. You are now being faced with another challenge and we know that once again you will be a fighter.... You are our little angel!!!
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