Zoe's neutrophil count came up to 700, so she had a partial chemo dose this past week. Being in Utah with her cousins has been so good for her - she wants to play with them even if she's not feeling so hot. She has continued to be pretty nauseous - smells make her sick and she had a few days that she didn't want to eat anything...just the usual, to-be-expected stuff.
I'm curious to see what tomorrow brings. I'll be pretty surprised if her counts are high enough to get chemo.
Tuesday, May 31, 2011
Tuesday, May 24, 2011
thank you!!
Zoe LOVES when surprises come in the mail & yesterday was her lucky day. Some kind, unknown soul ordered some fabulous books from amazon and sent them to her. So... many thanks to whomever did this!! If you let me know who you are, we can properly thank you :)
Wednesday, May 18, 2011
more of the same...
Zoe didn't receive chemo today because her counts were too low.... neutropenic again, surprise surprise. Apparently with this new phase of treatment, doctors aren't supposed to administer chemo if a patient is neutropenic. Since Zoe has been neutropenic for the majority of the past three months, I'm not quite sure how/if this treatment plan is going to work. Plan D, perhaps??
Tuesday, May 17, 2011
in Utah
Z and I made our way to Utah two weeks ago... during the prelude to Utah, I spent way too much time on the phone with doctors, insurance, etc - I thought my head was going to explode. It was a lot of work to get everything transferred... But now we're here and everything is coming into place. Last week Zoe and I met all our new doctors, and I'm happy and comfortable with them.
Zoe has had issues with nausea this past week - this wasn't much of a problem with her past chemo treatments. I'm wondering if she has been sick just because her body had a break from the meds and now her body has to adjust again. Guess we'll see. Even though she hasn't felt wonderful, it hasn't stopped her from playing with cousins. She is having a blast! (pictures to come later...)
Zoe has had issues with nausea this past week - this wasn't much of a problem with her past chemo treatments. I'm wondering if she has been sick just because her body had a break from the meds and now her body has to adjust again. Guess we'll see. Even though she hasn't felt wonderful, it hasn't stopped her from playing with cousins. She is having a blast! (pictures to come later...)
normal kid
Although the month of April was undoubtedly difficult in some ways, it was really fantastic in other ways. Zoe had a month break from chemo and it was absolutely wonderful to have our little girl back!!! The transformation was pretty dramatic... all of a sudden she had great energy, her appetite was back, she was less moody - she was just back to her normal, fun, spunky self. She gained about 2.5 pounds back and I was so happy to see her little chubby cheeks again. Zoe loved being able to play with friends and be outside in the warm weather... pictures to come later.
Monday, May 9, 2011
confusion...
The month of April was a tough one... I'll be honest. After receiving the news about Zoe's left (good) eye, everything with her treatment became so confusing. Zoe's doctors had VERY different opinions about what caused the damage to the left optic nerve and how to proceed forward. I haven't posted anything on the blog for a few weeks because I felt such a heaviness and didn't really want to talk about Zoe's treatment even though that was the only thing on my mind...
The dilemma:
Dr. Liu, the neuro-opthalmologist from Philly is the expert on optic gliomas... he suggested that perhaps Zoe's left eye was impacted from the beginning and this could not be detected on either MRI because the tumor involvment with the left eye was microscopic. He said the Vincristine absolutely did NOT cause the pallor to her left optic nerve. Dr. Liu believes that Zoe's tumor is fast growing. If his ideas are correct then continuing the exact same chemo treatment makes perfect sense because this regimen was effective in shrinking the tumor and possibly making steps toward restoring vision to Zoe's right eye.
Dr. Packer, the neuro-oncologist, is the expert on chemotherapy, brain tumors, etc. He said that we can't rule out the possibility of Vincristine causing the damage - this would be rare, but there are several published studies saying this can happen. There is too much risk involved and he is not willing to continue Vincristine, end of conversation.
So... what do you do with that??? Sean and I had a lot of intense discussions... obviously causing damage to Zoe's good eye is the last thing we want to do - this has become our top priority - possibly restoring vision to the right eye is now a lesser issue. However, if the Vincristine is not causing the problem, it's very difficult to walk away from something that seems to be effective and promising (It makes me sick/stressed all over again just typing this...) During one of our discussions, Sean and I thought Zoe was sitting in the back of the car listening to her music, but apparently she was paying close attention to what we were saying. She piped up and said in the most serious voice, "I want my eyesight back... I want the blind to go away." In that moment, we just felt horrible... she's three - she does not need to be worrying about this, but this is her reality...
After many prayers, several doctors visits, conference calls, yada yada, we have decided to continue chemo but only with the drug Carboplatin instead of the Carbo/Vincristine combo. I wouldn't say that Sean and I have had a major confirmation that this is the absolute correct way forward, but this is a treatment that everyone can agree on... Zoe begins chemo again this Wednesday.
The dilemma:
Dr. Liu, the neuro-opthalmologist from Philly is the expert on optic gliomas... he suggested that perhaps Zoe's left eye was impacted from the beginning and this could not be detected on either MRI because the tumor involvment with the left eye was microscopic. He said the Vincristine absolutely did NOT cause the pallor to her left optic nerve. Dr. Liu believes that Zoe's tumor is fast growing. If his ideas are correct then continuing the exact same chemo treatment makes perfect sense because this regimen was effective in shrinking the tumor and possibly making steps toward restoring vision to Zoe's right eye.
Dr. Packer, the neuro-oncologist, is the expert on chemotherapy, brain tumors, etc. He said that we can't rule out the possibility of Vincristine causing the damage - this would be rare, but there are several published studies saying this can happen. There is too much risk involved and he is not willing to continue Vincristine, end of conversation.
So... what do you do with that??? Sean and I had a lot of intense discussions... obviously causing damage to Zoe's good eye is the last thing we want to do - this has become our top priority - possibly restoring vision to the right eye is now a lesser issue. However, if the Vincristine is not causing the problem, it's very difficult to walk away from something that seems to be effective and promising (It makes me sick/stressed all over again just typing this...) During one of our discussions, Sean and I thought Zoe was sitting in the back of the car listening to her music, but apparently she was paying close attention to what we were saying. She piped up and said in the most serious voice, "I want my eyesight back... I want the blind to go away." In that moment, we just felt horrible... she's three - she does not need to be worrying about this, but this is her reality...
After many prayers, several doctors visits, conference calls, yada yada, we have decided to continue chemo but only with the drug Carboplatin instead of the Carbo/Vincristine combo. I wouldn't say that Sean and I have had a major confirmation that this is the absolute correct way forward, but this is a treatment that everyone can agree on... Zoe begins chemo again this Wednesday.
the circus!!
On April 14, all the "chemo kids" went to the circus together, courtesy of Growing Hope, the foundation Ms. Margy started. Our little family had been looking forward to the circus for weeks! We were worried that Zoe wasn't going to be able to go since she was still neutropenic, but Dr. Chang gave her the ok since she wasn't having chemo for a while. It was such a fun night - a great diversion - and we needed that... Zoe's favorite part of the night was having cotton candy for dinner :) My camera wasn't working (which I didn't realize until the end of the night) so we don't really have any pictures of the evening... but we have a fun family memory!
Tuesday, April 12, 2011
the latest...
We had a conference call yesterday afternoon with Dr. Packer and it was amazing how we went from feeling very unsettled to feeling ok with the way forward. Here is the latest...
Zoe has to immediately stop her current chemo treatment regimen due to the problems she is likely having with Vincristine. Although experiencing vincristine neurotoxicity this early in the game is rare, it appears that is likely what is happening. The benefits of this treatment protocol do not outweigh the risks. At this point, the best option is to do "active surveillance" of Zoe's tumor. We are taking a break from chemo for atleast three months and maybe for good (for the time being). Zoe will have another MRI in three months to see what the tumor is like then. If there is no new growth, we may decide to stop chemo altogether. Zoe's condition will constantly need to be monitored and we will decide treatment options as we go.
Zoe will meet with Dr. Avery in about two weeks for more imaging and vision tests to try and determine what level of damage has been done to her left eye. Dr. Packer does not know if the damage to her left eye is reversible, but was quite sure that no further damage will be done since her last chemo dose was over a week ago. We are relieved that whatever damage has been done to her left optic nerve does not appear to be impacting her measured vision at this point.
Dr. Chang, Zoe's oncologist, wants to have Zoe's port removed if she will not be having chemo for atleast three months. Because of her blood clot and other issues related to infection and maintaining the port, he just feels like it is the safest move. If we do end up doing more chemo in a few months she will just have another port placed. Zoe will have another vascular study probably within the next week to check the status of her blood clot and then Dr. Chang will decide about surgery to remove the port.
We have pushed our move to Utah back a few weeks until we can get things figured out a bit more.
There ya have it!
Zoe has to immediately stop her current chemo treatment regimen due to the problems she is likely having with Vincristine. Although experiencing vincristine neurotoxicity this early in the game is rare, it appears that is likely what is happening. The benefits of this treatment protocol do not outweigh the risks. At this point, the best option is to do "active surveillance" of Zoe's tumor. We are taking a break from chemo for atleast three months and maybe for good (for the time being). Zoe will have another MRI in three months to see what the tumor is like then. If there is no new growth, we may decide to stop chemo altogether. Zoe's condition will constantly need to be monitored and we will decide treatment options as we go.
Zoe will meet with Dr. Avery in about two weeks for more imaging and vision tests to try and determine what level of damage has been done to her left eye. Dr. Packer does not know if the damage to her left eye is reversible, but was quite sure that no further damage will be done since her last chemo dose was over a week ago. We are relieved that whatever damage has been done to her left optic nerve does not appear to be impacting her measured vision at this point.
Dr. Chang, Zoe's oncologist, wants to have Zoe's port removed if she will not be having chemo for atleast three months. Because of her blood clot and other issues related to infection and maintaining the port, he just feels like it is the safest move. If we do end up doing more chemo in a few months she will just have another port placed. Zoe will have another vascular study probably within the next week to check the status of her blood clot and then Dr. Chang will decide about surgery to remove the port.
We have pushed our move to Utah back a few weeks until we can get things figured out a bit more.
There ya have it!
peace during trials
It was a "heavy" weekend... we had a nice time together, but in the back of our mind our heart, Sean and I had a lot of worry related to our latest news. On Monday, while I was studying my scriptures and reading The Book of Mormon, I came across a verse that was comforting. Mosiah 29:20 - "Thus doth the Lord work with his power in all cases among the children of men, extending the arm of mercy towards them that put their trust in him."
A few days earlier, I read this scripture Mosiah 24:13-15 "Lift up your heads and be of good comfort...I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."
What a blessing it is to know that we have a loving Heavenly Father, who knows our needs and is very aware of every aspect of our lives...
A few days earlier, I read this scripture Mosiah 24:13-15 "Lift up your heads and be of good comfort...I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."
What a blessing it is to know that we have a loving Heavenly Father, who knows our needs and is very aware of every aspect of our lives...
a little somethin' somethin'
Sean and I are wondering if the pharmacist is slippin' a little somethin' extra into Zoe's Lovenox shots... we certainly don't have issues getting her to cooperate for shots - in fact, just the opposite. A few times every day Zoe will say in a dramatic voice, "Ahhh - You forgot the numbing cream and the shot giver!!" I tell her that we only do shots in the morning and at night... but she repeats this every day. It's slightly frightening that she seems to enjoy getting her shots.
wild child
Zoe was crazy on Sunday - and it was absolutely WONDERFUL! All of the happiness, silliness, and energy that has been absent or surpressed the past 10 weeks was definitely unleashed. We had such a fun day together playing at home in the morning and going on a long walk in the afternoon - actually not so much of a walk, because Zoe RAN the whole time... just like her old self. It's amazing what can happen when you stop pumping poison into a kid's body...
Saturday, April 9, 2011
unsettling phone call
Yesterday afternoon I received a call from Dr. Avery - Zoe's neuro-opthamologist... his news really caught me off guard. Earlier in the day, Dr. Avery was looking again at the images of Zoe's optic nerve as well as the MRI scans. He noticed that the optic nerve of the left eye (good eye) is more pale than it used to be.
(A pale optic nerve = no life... No life in the optic nerve = no vision). However, this is somewhat perplexing because Zoe's measured vision is 20/25 - it appears that she can see really well out of her left eye.
Zoe is involved in a study conducted by Dr. Avery and Dr. Liu, the neuro-opthamologist she saw in Philly. So, yesterday Dr. Avery sent the images to Dr. Liu, not mentioning his concern about the left optic nerve. Independently, Dr. Liu had the same concern. At that point, several others were drawn into the discussion to see if they could figure out what is going on. Thankfully, it does not look like the tumor is involved in causing issues with Zoe's left optic nerve. The other idea is perhaps there are neurotoxicity issues with the Vincristine. However, the doctors all feel that it is too soon in the treatment course for this to be happening. In my mind, this seems like the only likely factor if the tumor is being ruled out. Zoe has already had "uncommon" side effects from Vincristine, so it wouldn't surprise me if she was experiencing Vincristine neurotoxicity even if it is considered to be too soon. The plan, as of now, is to continue treatment as expected and then do thorough imaging and vision tests in May and again in July.
This weekend, Sean and I are trying to gather our thoughts and come up with questions to ask on Monday. This news just made us sick... Zoe has one eye to work with - we can't take any risks with her good eye. We may need to explore other treatment protocols - meaning other chemotherapy drugs. It's a tough call because the current drug combo seems to be effective in treating the tumor, but we certainly have to go a different direction if this treatment is harming her other eye. AAAHHHH!! Thank heaven for a great team of doctors who are concerned and trying to help us make a good decision.
(A pale optic nerve = no life... No life in the optic nerve = no vision). However, this is somewhat perplexing because Zoe's measured vision is 20/25 - it appears that she can see really well out of her left eye.
Zoe is involved in a study conducted by Dr. Avery and Dr. Liu, the neuro-opthamologist she saw in Philly. So, yesterday Dr. Avery sent the images to Dr. Liu, not mentioning his concern about the left optic nerve. Independently, Dr. Liu had the same concern. At that point, several others were drawn into the discussion to see if they could figure out what is going on. Thankfully, it does not look like the tumor is involved in causing issues with Zoe's left optic nerve. The other idea is perhaps there are neurotoxicity issues with the Vincristine. However, the doctors all feel that it is too soon in the treatment course for this to be happening. In my mind, this seems like the only likely factor if the tumor is being ruled out. Zoe has already had "uncommon" side effects from Vincristine, so it wouldn't surprise me if she was experiencing Vincristine neurotoxicity even if it is considered to be too soon. The plan, as of now, is to continue treatment as expected and then do thorough imaging and vision tests in May and again in July.
This weekend, Sean and I are trying to gather our thoughts and come up with questions to ask on Monday. This news just made us sick... Zoe has one eye to work with - we can't take any risks with her good eye. We may need to explore other treatment protocols - meaning other chemotherapy drugs. It's a tough call because the current drug combo seems to be effective in treating the tumor, but we certainly have to go a different direction if this treatment is harming her other eye. AAAHHHH!! Thank heaven for a great team of doctors who are concerned and trying to help us make a good decision.
Wednesday, April 6, 2011
results of MRI and vision tests
So, the good and the not so good...
TUMOR: Zoe's tumor SHRUNK a millimeter in each direction - this is really significant! The doctors never suggested as a possibility that the tumor would shrink. They said chemotherapy may "neutralize" the tumor and was known on occasion to possibly "soften" the tumor, but they told us NOT to expect the tumor to shrink. Zoe's MRI showed the shrinkage to be about 10-15 percent. Also, the measured proptosis (eye bulge) has lessened, which the doctor said could be the result of the tumor shrinking. The test results affirmed our belief in prayer and made us grateful for modern medicine.
EYE: The imaging of Zoe's right optic nerve shows slightly more "pallor" than it did three months ago - a pale optic nerve is not a good thing. If the chemo has the potential to have a positive impact on vision, Dr. Avery said it could take 3-6 months before results are noticed. We'll repeat tests in three months and re-evaluate.
BLOOD TESTS: The dreaded "N" word again - neutropenic.... grrrrr.... We actually expected this to happen since Zoe has had full doses of carboplatin the past two weeks. Back to isolation and the neutropenic diet. No fun for anyone...
The next phase of treatment will be four weeks of chemo followed by a three week rest period (we'll do two cycles of this and then another MRI and vision test.) I'm thinking the rest period may be our saving grace. It looks like Zoe's neutrophil count will continue to be very low whenever she receives carboplatin, so having that break should help her counts come up and allow her to have a bit of summer fun.
Once again, thank you all for your concern, support, and prayers.
TUMOR: Zoe's tumor SHRUNK a millimeter in each direction - this is really significant! The doctors never suggested as a possibility that the tumor would shrink. They said chemotherapy may "neutralize" the tumor and was known on occasion to possibly "soften" the tumor, but they told us NOT to expect the tumor to shrink. Zoe's MRI showed the shrinkage to be about 10-15 percent. Also, the measured proptosis (eye bulge) has lessened, which the doctor said could be the result of the tumor shrinking. The test results affirmed our belief in prayer and made us grateful for modern medicine.
EYE: The imaging of Zoe's right optic nerve shows slightly more "pallor" than it did three months ago - a pale optic nerve is not a good thing. If the chemo has the potential to have a positive impact on vision, Dr. Avery said it could take 3-6 months before results are noticed. We'll repeat tests in three months and re-evaluate.
BLOOD TESTS: The dreaded "N" word again - neutropenic.... grrrrr.... We actually expected this to happen since Zoe has had full doses of carboplatin the past two weeks. Back to isolation and the neutropenic diet. No fun for anyone...
The next phase of treatment will be four weeks of chemo followed by a three week rest period (we'll do two cycles of this and then another MRI and vision test.) I'm thinking the rest period may be our saving grace. It looks like Zoe's neutrophil count will continue to be very low whenever she receives carboplatin, so having that break should help her counts come up and allow her to have a bit of summer fun.
Once again, thank you all for your concern, support, and prayers.
Tuesday, April 5, 2011
chemo week 10
WEEK 10 - we made it! It feels like this process started forever ago. It's been a long three months. We are really anxious for Zoe to have her vision tests and MRI tomorrow, since that will determine what happens for the next several months. Also, Zoe's neutrophil count went up to the 900's this week - still low, but awesome for her!
Dr. Chao, another wonderful oncologist...
Making lego towers with Ms. Daniella...
Dr. Chao, another wonderful oncologist...
Making lego towers with Ms. Daniella...
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