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!
Tuesday, April 12, 2011
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...
chemo week 9
Zoe's counts went up a tiny bit more - her neutrophils are at 570 now - nowhere near what they need to be, but above the neutropenic line and progress is progress. Dr. Chang said it is unusual that her counts would stay this low for this long -- especially considering that she had two weeks where she had NO carboplatin and then two subsequent weeks where she received only a half dose. So, we talked about some of the options we have to boost her neutrophil count. We will wait until next week and see what her counts are before we go forward with those options.
Getting "accessed" by Remi - one of the fabulous nurses. Zoe loves watching when they do the blood draw because she thinks "the blood is such a beautiful color." (and she says this with such enthusiasm!) She told me she wants to be a doctor AND a nurse when she gets big.
Zoe posing with Dr. Chang, her primary oncologist. Dr. Chang has a little place in our hearts... He was the doctor that gave us Zoe's diagnosis and he was on rotation in the hospital the week Zoe was there - he was so patient and caring with us, always willing to answer our million questions...
Margy, Gretchen, Anne, and the munchkin - doing yet another art project...
This dose of chemo was actually a bit tough on Zoe. She has seemed much more nauseous and she can't stand the smell of anything. She eats her meals with one hand covering her nose and the other hand feeding herself.
(yes, this is a super healthy dinner of nachos... but the kid needs some chub on her!)
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