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...
Tuesday, April 12, 2011
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!)
Wednesday, March 23, 2011
Our family...
*this is a disjointed post, but it all kind of fits together, so just keep reading...
About three months ago, I asked Zoe to draw a picture of our family, and this is what she drew... 5 "smiling" heads with stick legs and shoes.
Some of you know that Brother (whom Zoe calls Cutie) and Sister (whom she calls Beauty) have been part of Zoe's world for a long time... So it was no surprise that Zoe would draw them as part of our family. Zoe started talking about brother shortly after beginning to talk and then sister followed about six months later. We hear about brother and sister all the time... And Zoe quickly learned how to use brother and sister to her advantage - if she got a snack, she would need one for brother and sister as well, naturally...
So, going back a bit... Zoe was diagnosed on January 11th. On the morning of January 15th (a day or so after being released from the hospital) Zoe randomly said, "Brother and Sister were in bed with me when I was sick... and Brother told me that everything would be ok." Well, that night we found out we are pregnant. Kind of interesting... And I have to admit that I was terrified for a few days that I was pregnant with both brother AND sister at the same time - but I'm not... just one little munchkin. We should find out in one week whether it is a brother or a sister. Here is an ultrasound picture from a couple weeks ago.
Because I will be on bedrest again, Zoe and I will be moving to Utah in about three weeks. We will miss Sean like crazy, and hopefully he'll miss us a bit as well. Zoe will continue treatment there (unless there are any major surprises with her upcoming MRI in two weeks). I, on the other hand, will be parked on the swing in the yard eating burgers and shakes from Steph's drive-in. I feel so blessed to have such amazing family members who are willing (well, willing atleast at this point) to do everything for Zoe and I the next several months.
One last little thing - I have felt really bad the last few months for not returning e-mails, phone calls, writing timely thank you notes, etc; I truly am so appreciative of the way everyone has supported and loved us - please know that... But most days when I had a free minute I was so exhausted or feeling like junk that there wasn't a whole lot I could do. Please know that we have been so thankful!!!
Monday, March 21, 2011
chemo week 8
Zoe's neutrophil counts came up slightly this past week - from 480 to 540. (Neutropenic is anything below 500.) So, technically she is no longer neutropenic, but just barely above. We were told to continue following the neutropenic diet and Zoe still can't be around groups of people or go into public BUT she CAN have playdates... which will be so wonderful this week because it is supposed to rain nearly every day.
Because her counts are still really low, she had only a 1/2 dose of carboplatin again... Out of the 8 weeks that she has had chemo, 4 of the weeks have been decreased doses of either the carboplatin or the vincristine. I hope she's getting enough of the drug to actually do the job... Of course I have asked these questions and have been assured that it will be fine, but it still makes me wonder/worry....
Zoe had such a great day on Saturday! IT WAS WONDERFUL!! We went on a long walk and Z wanted to be out of the stroller running quite a bit of the time. We played hide and seek all through the forest. At some point, we're probably going to have to inform the kid that just because her eyes are closed and she can't see anybody, that doesn't mean that people can't see her... Sean and I just loved every second of having our little rascal back!
Because her counts are still really low, she had only a 1/2 dose of carboplatin again... Out of the 8 weeks that she has had chemo, 4 of the weeks have been decreased doses of either the carboplatin or the vincristine. I hope she's getting enough of the drug to actually do the job... Of course I have asked these questions and have been assured that it will be fine, but it still makes me wonder/worry....
Zoe had such a great day on Saturday! IT WAS WONDERFUL!! We went on a long walk and Z wanted to be out of the stroller running quite a bit of the time. We played hide and seek all through the forest. At some point, we're probably going to have to inform the kid that just because her eyes are closed and she can't see anybody, that doesn't mean that people can't see her... Sean and I just loved every second of having our little rascal back!
Wednesday, March 16, 2011
chemo week 7
Sean got to be the chemo parent this past week. I sent him with a long list of things to ask/things to do...
Things like...
*Get a lab report showing Zoe's absolute neutrophil count.
*Find out what the Lovenox dose is changing to.
*Talk with Evelyn, the nurse educator, and get trained on giving shots.
Just over two months ago, these "things" would never have crossed our minds... but now this is our reality and these are things that have made us more loving and grateful as parents... things that have brought our family relationship even closer... but also things that have caused our little girl pain and discomfort and made her grow up faster than we would like.
Things like...
*Get a lab report showing Zoe's absolute neutrophil count.
*Find out what the Lovenox dose is changing to.
*Talk with Evelyn, the nurse educator, and get trained on giving shots.
Just over two months ago, these "things" would never have crossed our minds... but now this is our reality and these are things that have made us more loving and grateful as parents... things that have brought our family relationship even closer... but also things that have caused our little girl pain and discomfort and made her grow up faster than we would like.
Zoe is still neutropenic (really low levels of white blood cells), which means she still has to be isolated... It's been tough because we feel like we can't allow her to be a kid, but actually she doesn't have the energy to do things she'd like to do anyway. We went on a walk this weekend and normally Zoe would RUN the entire trail, but she didn't even want to get out of the stroller. It's been difficult for Sean and I to see this change...
Monday, March 7, 2011
bummer
Zoe had another vascular study at the hospital this morning - the blood clot is still there... bummer deal. So, she'll still be getting two shots a day.
Friday, March 4, 2011
good news/bad news - chemo week 6
Good news first... Zoe's new port worked perfectly today!!!! Thank heaven! We had a "quick" office visit and now we're home and Z and I are both going to take a nap.
Bad news... Zoe is neutropenic - meaning that her level of neutrophils (the type of white blood cell that fights off infections) is dangerously low. Not good... She got close to the neutropenic level a few weeks ago but then her white counts went back up but since dropped a ton this past week. Her red blood cells, hematocrit, and hemoglobin counts have also been low for several weeks. So... she is basically in isolation this week and we have to be careful about what she eats.
If you were looking for something specific to pray for, pray that Zoe's counts can go back up and that she will not get any sort of infection.
Bad news... Zoe is neutropenic - meaning that her level of neutrophils (the type of white blood cell that fights off infections) is dangerously low. Not good... She got close to the neutropenic level a few weeks ago but then her white counts went back up but since dropped a ton this past week. Her red blood cells, hematocrit, and hemoglobin counts have also been low for several weeks. So... she is basically in isolation this week and we have to be careful about what she eats.
If you were looking for something specific to pray for, pray that Zoe's counts can go back up and that she will not get any sort of infection.
I'll be brave...
Zoe has become such a champ about getting her shots. When we started giving her shots a week ago we were dragging her out from underneath the table and now she will hold completely still. The other morning when I told her it was time for a poke she said, "Momma, I'll be brave. I won't freak." She truly is my little angel. On Monday, Zoe will have another vascular study to see if the blood clot has dissolved - if so, she will only need one shot a day.
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