In my last post from 2011, I mentioned that Zoe would be "taking a break" from chemo since her blood counts were no longer high enough to allow her to receive chemo. In other words, Zoe's immune system was already so weakened she could not tolerate chemotherapy. Three months ago, for the first time in nearly four years, Zoe had a normal blood test... and ironically, her tumor has started growing again and her break from chemotherapy is now over.
A few weeks ago, Zoe began telling us that her head and eye were hurting. Zoe has not complained of this since she was originally diagnosed with a brain tumor four years ago. We also recently noticed that Zoe's right eye consistently looked more proptotic (pushed out). Sean and I suspected that her tumor was growing again, and an MRI on January 16th confirmed this to be true. We have met with Zoe's team of doctors this past week and they conclude that the tumor growth has been "quite substantial" and requires treatment again. The break from chemo was great while it lasted.
Thursday, January 22, 2015
Thursday, December 1, 2011
playing catch up...
Here is a quick attempt to catch up on what's been happening with Little Miss Z the past three months...
Zoe became a BIG SISTER!!! She absolutely adores Claire! She has to be reminded 83 times a day to give her a little space... We all feel so blessed to have this new little babe as part of our family.
Zoe turned 4! She suddenly became very preoccupied with who is bigger, older, faster, etc - and she thinks she is all of the above and she isn't afraid to let other kids know this.
In August, Zoe's doctors suggested that we "take a break" from chemotherapy... Her neutrophil counts continued to stay low throughout the summer, so we weren't able to have chemo regularly. Decisions regarding Zoe's treatment are always difficult for Sean and I to make... One day we will have to explain to Zoe why we did or didn't do certain things, so we always feel the weight of our decisions because they will have a life-long impact on her. On a selfish note, I am welcoming a break from chemo. I'm excited to let Zoe be more of a normal kid - to go to preschool, play with cousins & friends, eat what she wants, etc. I'm tired of taking her to the hospital every time she has a fever (and we did that plenty this summer). So, since we are no longer doing chemo, Zoe had surgery the end of October to get her port out!
We celebrated with the Turner crew by having a PORT PARTY - Zoe was really excited about it and helped pick out the treats and food she wanted.
Our time in Utah came to an end. We were very sad to say goodbye to the Turner crew... but it was time to get back to "normal" life -- (although this last year has felt like anything but normal). Anyhow, it's great to be living together as a little family again. Zoe was also really excited about going back to preschool. Also, although we had to say goodbye to Nanny and Poppa, we were so happy we got to spend a bit of time with Khaki and Bim during a quick trip they made to Virginia..
So, Little Miss Z is doing really well, all things considered. She has another eye exam tomorrow and an MRI in three weeks so I will post about that later. Since we aren't doing chemo anymore, I won't be posting too often since my original intent was for this to be a blog about her treatment process... I will try to give more timely updates when we have them.
We continue to feel so blessed by the love, support, and concern you have shown us. It means more than you know...
Zoe became a BIG SISTER!!! She absolutely adores Claire! She has to be reminded 83 times a day to give her a little space... We all feel so blessed to have this new little babe as part of our family.
Zoe turned 4! She suddenly became very preoccupied with who is bigger, older, faster, etc - and she thinks she is all of the above and she isn't afraid to let other kids know this.
We celebrated with the Turner crew by having a PORT PARTY - Zoe was really excited about it and helped pick out the treats and food she wanted.
Zoe finally broke the Halloween curse!!! This is her fifth Halloween, but it is the first year that she has actually been able to fully celebrate Halloween, American style. On Zoe's first Halloween, she was readmitted to the hospital, after having already spent two months in the NICU. Her second and third Halloweens were spent in Jerusalem and although the consulate does a great job of making Halloween festive for little kiddos they still miss out on the door-to-door trick-or-treating. Zoe's fourth Halloween was also spent in the hospital. Finally, this year she broke the curse... and she had a blast running around with her cousins.
Our time in Utah came to an end. We were very sad to say goodbye to the Turner crew... but it was time to get back to "normal" life -- (although this last year has felt like anything but normal). Anyhow, it's great to be living together as a little family again. Zoe was also really excited about going back to preschool. Also, although we had to say goodbye to Nanny and Poppa, we were so happy we got to spend a bit of time with Khaki and Bim during a quick trip they made to Virginia..
So, Little Miss Z is doing really well, all things considered. She has another eye exam tomorrow and an MRI in three weeks so I will post about that later. Since we aren't doing chemo anymore, I won't be posting too often since my original intent was for this to be a blog about her treatment process... I will try to give more timely updates when we have them.
We continue to feel so blessed by the love, support, and concern you have shown us. It means more than you know...
Saturday, August 20, 2011
Pediatric Brain Tumor Foundation Event
Last Saturday, the annual "Ride for Kids" event happened to be in Morgan, Utah - of all places!! Because I didn't want my kid bailing out of a side car on the highway, I didn't let Zoe ride in the motorcycle part of the event, which started in Salt Lake. But the ride ended in Morgan, which was super convenient for us. I had no idea what to expect of this event - I was told it was a picnic, but it was a formal, three-hour program. Each of the kids were asked to come up on the stage and tell about themselves. Zoe decided to sing "I Love You a Bushel and a Peck" and she stole the show... definitely the FitzGerald in her. I have to say I was a pretty proud momma. Even the big, tough biker dudes were teary-eyed. Perhaps at some point I'll download the video...
Wednesday, August 17, 2011
three blind mice
As we were driving in the car, Zoe must have had some sort of epiphany and she excitedly said, "The three blind mice are blind just like me! But they must have two tumors because they are blind in two eyes, not just one like me!"
too old to pray
Since we have been in Utah, Zoe hasn't been very willing to say prayers... one day I asked her what the deal was and why she didn't like to pray anymore. Her response was, "I'm just too old for that now." She is more than willing to interrupt others and tell them what to pray for though. Nearly everytime I say our family prayer I hear, "Mom - Mom - you should bless for....." Even though Zoe is "too old" to pray, she apparently still has faith in and senses a need for priesthood blessings. A few weeks ago we were at the park and I had been taking some pictures of Zoe's darling cousin, Drew. Completely out of the blue Zoe said, "I think Drew needs a blessing." So, she proceeded to give him a blessing. I was sitting too far away to hear the words she said, and perhaps I should have been more reverent, but I was camera-ready and my first reaction was to snap a few pics. You can tell by the pictures that she was completely serious. It has been interesting the past few months to see Zoe's understanding and faith develop.
Thursday, August 4, 2011
Angels... and my sister
For many years, I have loved the scripture found in Doctrine and Covenants 84:88; this scripture has taken on added significance the past several months...
"...I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."
Since Zoe was little, before I walk out of her room at night I have said, "Angels will watch over you and I'll see you in the morning." I know that angels have been watching over Zoe the past several months... and I know my sister Robyn has been one of them. I have felt a particular closeness with Robyn since Zoe has begun treatment... Robyn knows what Zoe is going through.
Exactly two years ago today, Robyn began her work as a heavenly angel, after her courageous battle with cancer. I miss my sis in ways I can't describe... but I know that her work continues and I'm grateful Zoe has an extra-special angel to watch over and comfort.
examples of faith and strength
This past week, three women have made an impact on my heart and have taught me some important lessons... and I want to make sure I have a record of it, so I'm including it in this blog.
Zoe made a friend at chemo our first week here in Utah - I'll call her Kaylee. Kaylee is 11. She had two brain tumors - one large, one smallish. The large tumor was removed through surgery, but the small one couldn't be removed. The chemo and radiation treatments caused the small tumor to split into about 20 smaller tumors. Kaylee doesn't have much of a short term memory and she wasn't able to attend school much this past year because she was too sick. She's very skinny and frail, but has the biggest smile, dazzling eyes, and a fabulous attitude. She's darling... and she is always so happy to see Zoe. Well, last week at chemo I talked with Kaylee's mom for a while. Apparently Kaylee has started to have strokes - three in the past three weeks. Her mom said that in the research she has done, once kids with this type of tumor start having this type of stroke, they die within three weeks. Maybe Kaylee will prove to be different, but I don't understand how a mother can know and accept such an outcome... That takes incredible faith. I asked what Kaylee understood of her prognosis and she said that one morning Kaylee woke up and said, "It would be so much easier if I just went to bed and didn't wake up." This isn't a little girl giving up - she's a fighter - it's just a little girl who understands what is happening... Kaylee's mom told her if that was what she felt she needed to do, it would all be ok... I can't even type right now because I can't see the screen through my tears... it absolutely breaks my heart.
Yesterday, I met a woman (I'll call her Deb) and her three-year-old angel daughter at chemo. The sweet little angel (I'll call her Brooke) has Down's Syndrome and leukemia. When I initially saw them, the first thing that popped into my mind was, "Double Whammy..." Actually, after talking with Deb more, I learned it was more like a quadruple whammy... Brooke has an identical twin who has recently started showing all the same signs of leukemia. Apparently the fact that she is an identical twin and has Down's Syndrome make her more susceptible to this type of leukemia anyway. The parents feel strongly this is what is happening, but they are waiting to have her tested until after a family vacation this next week. This family vacation is the last wish of Brooke's grandmother who is dying of cancer. And there is more... Brooke is #5 of 7 children. One of Brooke's siblings is on the Autism Spectrum. I can't imagine the demands on Deb's time and her heart. As I spoke with Deb, I was truly in awe... Prior to Brooke and her twin being born, Deb and her husband had no idea the babies had Down's Syndrome. It was quite a shock, but they are so grateful for their angel babies and would not change a thing. When Brooke started to become sick, Deb took her to the pediatrician several times during a month. The pediatrician kept dismissing her concerns, but things became progressively worse. Eventually a blood test was performed at a different facility which confirmed that Brooke had leukemia. By this point, Brooke was extremely sick and the doctors said she would have died within two weeks if this wouldn't have been caught when it was. It would have been very easy for Deb and her husband to be angry with the pediatrician, but they aren't... they have forgiven him... They rely upon each other and they rely upon God and He blesses them with grace and strength...
As Zoe and I were leaving the hospital yesterday, we were so blessed to run into some family friends whom we don't see very often. ("Jen," two of her children, and Jen's mother) This family is incredible and they had a great impact on Sean's life growing up, and more recently have influenced my life as well. We love and appreciate their entire family for many reasons... They were at the hospital yesterday for some appointments for Jen's son, who has various "disabilities" (I really don't like that word...). As I saw Jen pushing her son's wheelchair, I immediately thought about what is required of her to care for her son's physical needs. I had the privilege of working at a summer camp for children/young adults with disabilities - I'm grateful for what I learned through that experience, but it was so physically exhausting... and Jen does that daily... mom's don't have a break. Then I thought about what it is like for Jen to be at the hospital... Jen's beautiful daughter died a few years ago from leukemia. Jen has spent too much time in a hospital and I wondered if she felt haunted by difficult memories whenever she had to be there. I know that God does not test us with more than what we are able to endure - Jen has endured more than most can imagine... clearly, she is a strong and choice woman.
**I found a quote by Elder Neal A. Maxwell about a month ago that has really stuck with me... "Rather than simply passing through trials, we must allow trials to pass through us in ways that sanctify us." To sanctify means to make holy and to purify... These three women, because of their personal strength and their faith in God, have become purified through their trials. How grateful I am for their examples...
Zoe made a friend at chemo our first week here in Utah - I'll call her Kaylee. Kaylee is 11. She had two brain tumors - one large, one smallish. The large tumor was removed through surgery, but the small one couldn't be removed. The chemo and radiation treatments caused the small tumor to split into about 20 smaller tumors. Kaylee doesn't have much of a short term memory and she wasn't able to attend school much this past year because she was too sick. She's very skinny and frail, but has the biggest smile, dazzling eyes, and a fabulous attitude. She's darling... and she is always so happy to see Zoe. Well, last week at chemo I talked with Kaylee's mom for a while. Apparently Kaylee has started to have strokes - three in the past three weeks. Her mom said that in the research she has done, once kids with this type of tumor start having this type of stroke, they die within three weeks. Maybe Kaylee will prove to be different, but I don't understand how a mother can know and accept such an outcome... That takes incredible faith. I asked what Kaylee understood of her prognosis and she said that one morning Kaylee woke up and said, "It would be so much easier if I just went to bed and didn't wake up." This isn't a little girl giving up - she's a fighter - it's just a little girl who understands what is happening... Kaylee's mom told her if that was what she felt she needed to do, it would all be ok... I can't even type right now because I can't see the screen through my tears... it absolutely breaks my heart.
Yesterday, I met a woman (I'll call her Deb) and her three-year-old angel daughter at chemo. The sweet little angel (I'll call her Brooke) has Down's Syndrome and leukemia. When I initially saw them, the first thing that popped into my mind was, "Double Whammy..." Actually, after talking with Deb more, I learned it was more like a quadruple whammy... Brooke has an identical twin who has recently started showing all the same signs of leukemia. Apparently the fact that she is an identical twin and has Down's Syndrome make her more susceptible to this type of leukemia anyway. The parents feel strongly this is what is happening, but they are waiting to have her tested until after a family vacation this next week. This family vacation is the last wish of Brooke's grandmother who is dying of cancer. And there is more... Brooke is #5 of 7 children. One of Brooke's siblings is on the Autism Spectrum. I can't imagine the demands on Deb's time and her heart. As I spoke with Deb, I was truly in awe... Prior to Brooke and her twin being born, Deb and her husband had no idea the babies had Down's Syndrome. It was quite a shock, but they are so grateful for their angel babies and would not change a thing. When Brooke started to become sick, Deb took her to the pediatrician several times during a month. The pediatrician kept dismissing her concerns, but things became progressively worse. Eventually a blood test was performed at a different facility which confirmed that Brooke had leukemia. By this point, Brooke was extremely sick and the doctors said she would have died within two weeks if this wouldn't have been caught when it was. It would have been very easy for Deb and her husband to be angry with the pediatrician, but they aren't... they have forgiven him... They rely upon each other and they rely upon God and He blesses them with grace and strength...
As Zoe and I were leaving the hospital yesterday, we were so blessed to run into some family friends whom we don't see very often. ("Jen," two of her children, and Jen's mother) This family is incredible and they had a great impact on Sean's life growing up, and more recently have influenced my life as well. We love and appreciate their entire family for many reasons... They were at the hospital yesterday for some appointments for Jen's son, who has various "disabilities" (I really don't like that word...). As I saw Jen pushing her son's wheelchair, I immediately thought about what is required of her to care for her son's physical needs. I had the privilege of working at a summer camp for children/young adults with disabilities - I'm grateful for what I learned through that experience, but it was so physically exhausting... and Jen does that daily... mom's don't have a break. Then I thought about what it is like for Jen to be at the hospital... Jen's beautiful daughter died a few years ago from leukemia. Jen has spent too much time in a hospital and I wondered if she felt haunted by difficult memories whenever she had to be there. I know that God does not test us with more than what we are able to endure - Jen has endured more than most can imagine... clearly, she is a strong and choice woman.
**I found a quote by Elder Neal A. Maxwell about a month ago that has really stuck with me... "Rather than simply passing through trials, we must allow trials to pass through us in ways that sanctify us." To sanctify means to make holy and to purify... These three women, because of their personal strength and their faith in God, have become purified through their trials. How grateful I am for their examples...
recap of the week
Neupogen did the trick - for a minute... Zoe's neutrophil count went from 500 to 9,000!!! When I told Zoe that her "blood was good" (meaning she wasn't neutropenic anymore) the first thing she said was "YAY - can I have a strawberry then?!" I loved this child-like response, but it made me sad because it really showed that she understands things... She gets it that when she's neutropenic a lot of her favorite foods aren't an option... and she goes with it. Such a good kid.
Zoe got a full chemo treatment on the 27th. I've heard Neupogen called "the shot of life" and she definitely had plenty of spunk this past week and seemed to feel really good.
On Tuesday the home health nurse came for a blood draw - not great results... she was back down to 600. Everyone expected that she would drop again, but not that quickly. I felt frustrated... I know this treatment process is a long road, but it gets tiresome when it seems like every route we take ends up with some sort of road block. I'm grateful for opportunities I have to talk with other families going through treatment, because it gives me the attitude adjustment I need, so my pity-parties don't last too long. (I'll blog about that soon, hopefully...)
We went to the doctor yesterday and her counts dropped a bit more to 500. They decided to give her a partial dose of chemo anyway. I'm expecting her counts to drop even more this week so we need to be careful. Great timing because it's the Morgan County Fair :) Zoe has been talking about the fair for months - truly. And I've been excited to get her all dolled up in her red cowgirl boots and outfit from Khaki and Bim. I think we'll still go, even if that means she has to wear a mask. I really don't like making her wear a mask because of the attention it draws.
Zoe got a full chemo treatment on the 27th. I've heard Neupogen called "the shot of life" and she definitely had plenty of spunk this past week and seemed to feel really good.
On Tuesday the home health nurse came for a blood draw - not great results... she was back down to 600. Everyone expected that she would drop again, but not that quickly. I felt frustrated... I know this treatment process is a long road, but it gets tiresome when it seems like every route we take ends up with some sort of road block. I'm grateful for opportunities I have to talk with other families going through treatment, because it gives me the attitude adjustment I need, so my pity-parties don't last too long. (I'll blog about that soon, hopefully...)
We went to the doctor yesterday and her counts dropped a bit more to 500. They decided to give her a partial dose of chemo anyway. I'm expecting her counts to drop even more this week so we need to be careful. Great timing because it's the Morgan County Fair :) Zoe has been talking about the fair for months - truly. And I've been excited to get her all dolled up in her red cowgirl boots and outfit from Khaki and Bim. I think we'll still go, even if that means she has to wear a mask. I really don't like making her wear a mask because of the attention it draws.
Thursday, July 21, 2011
neupogen shots
Zoe's doctors realized that her blood counts aren't going to make a dramatic improvement on their own. So, last night we started neupogen shots which should stimulate her body to make more neutrophils. Three shots a day for a bit... the poor kid was so good about it last night. I'm running out of "shot spots" though - it's tough to find a spot in her little bruised arms or legs anymore, but we were finally able to start giving shots in her belly because it has a teensy bit of fat on it now. I'm really hoping neupogen will do the trick...
Tuesday, July 19, 2011
Stuck on repeat
Same story as last week... Still waiting for blood counts to come up so she can get chemo.
Thursday, July 14, 2011
The home health nurse came on Tuesday to do a blood draw - Z's counts are still too low to get chemo. It's so nice to have this home health system now so that atleast we don't waste our whole day sitting at the blasted hospital waiting to find out if she can get chemo or not. Zoe's cousins are so fascinated with all the shots, blood draws, etc. Nurse Nancy definitely had a captive audience on Tuesday - the cousins all wanted to be in on the action...
Sunday, July 10, 2011
a family again
Our little family was all together this past week - it was wonderful!! Two months is too long... Zoe was beyond excited when she woke up last Saturday and saw her dad. We had a great time together and it was nice to have Sean here on Wednesday for Zoe's MRI. The next time Sean comes into town he'll have another little girl to hold and love...
physical therapy
Once upon a time, Zoe was comfortable climbing ladders all by herself. At the park in Jerusalem, there was a natural rock wall that was about 20 feet high and Zoe would climb it alone. This all changed about six months ago, when she became blind in her right eye. She began to want someone to help her go up and down stairs, needed help at the playground to climb the ladder for the slide, etc... We had talked about beginning physical therapy earlier in the year, but Zoe just didn't have the energy. She has been feeling much better since being in Utah, so we started therapy about two weeks ago... I couldn't be happier with the way it's going. The therapist is fabulous and works so well with Zoe. The best part is she comes to the house for therapy. Zoe made major improvements in just two weeks. She will go up and down a ladder by herself and walk on the balance beam. She still has trouble going down stairs, but we'll keep working on it.
desensitized
The other day Zoe was eating some candy, and I told her she could only have a couple pieces or she would get sick. She thought for a minute and then said, "Well, if I get sick you can just take me to the hospital." Another day in the hospital = no biggie for Zoe... in her little mind, she can eat candy until she pops and then just go to the hospital to get better. She is completely desensitized...
special K and MRI
Zoe had another MRI on Wednesday... when Sean and I arrived in the recovery room, the nurse told us that they had to give Zoe some Ketamine. My unspoken response was "ARE YOU KIDDING ME?? You gave her WHAT??"
You see, in my pre-mom life, I did some work as a substance abuse educator/counselor in various settings - prison, court system, hospital, and schools... I learned about this funky little drug called "special K" - aka Ketamine. Ketamine is often used in the club/rave world because it is a short-lasting dissociative anaesthetic that causes hallucinations. In the veterinary world, Ketamine is a large animal tranquilizer. My sweet little girl is neither a raver nor a large animal, so why in the world did they give her Ketamine???? Well, ketamine is also used as an anesthetic, so it was actually perfectly safe and appropriate for them to give it to her (her leg kept spasming during the MRI) but my initial reaction wasn't so accepting...
Anyhow, back to the MRI... the results showed neither growth nor shrinkage. Stability is considered to be a positive outcome by the doctors. I didn't expect any shrinkage since Zoe has had only two whole doses and two partial chemo doses in the past three months. She was supposed to have chemo directly after MRI, but surprise, surprise her counts weren't high enough - even after a three week break from treatment... this definitely made me feel a bit disappointed and frustrated. Zoe has had problems with her white cell count all along and it just seems to not make any major improvements, regardless of whether we keep her out of public, follow the neutropenic diet, yada yada. So, we might try one more round of chemo and then rethink our options.
You see, in my pre-mom life, I did some work as a substance abuse educator/counselor in various settings - prison, court system, hospital, and schools... I learned about this funky little drug called "special K" - aka Ketamine. Ketamine is often used in the club/rave world because it is a short-lasting dissociative anaesthetic that causes hallucinations. In the veterinary world, Ketamine is a large animal tranquilizer. My sweet little girl is neither a raver nor a large animal, so why in the world did they give her Ketamine???? Well, ketamine is also used as an anesthetic, so it was actually perfectly safe and appropriate for them to give it to her (her leg kept spasming during the MRI) but my initial reaction wasn't so accepting...
Anyhow, back to the MRI... the results showed neither growth nor shrinkage. Stability is considered to be a positive outcome by the doctors. I didn't expect any shrinkage since Zoe has had only two whole doses and two partial chemo doses in the past three months. She was supposed to have chemo directly after MRI, but surprise, surprise her counts weren't high enough - even after a three week break from treatment... this definitely made me feel a bit disappointed and frustrated. Zoe has had problems with her white cell count all along and it just seems to not make any major improvements, regardless of whether we keep her out of public, follow the neutropenic diet, yada yada. So, we might try one more round of chemo and then rethink our options.
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