We took Keira to Children's today for her oncology appointment and got the results of her tests. All good news to follow!
Her chest CT showed her primary mass to be stable to slightly smaller. We didn't expect to see significant change since it hasn't been more than 8 weeks since her prior exam. We are grateful that there hasn't been an increase in size. Her Echo showed her heart function to be normal. The chemotherapy she received can be toxic to the heart, but so far Keira's heart looks good. She certainly acts as if everything is pumping normally. We can barely keep up with her! Her bloodwork is finally back to completely normal! Her white count had been low ever since her diagnosis, but it looks like it has finally recoverd completely. We are very excited!
The plan for now is to repeat her CT every 3 months for the next year but to do monthly urine checks. This will hopefully allow us to spare Keira the traumatic experience of IV placement and fasting for hours on end, yet still closely monitor her for relapse. We are very happy with this plan and look forward to less frequent trips to the CT scanner.
Keira and Jason are currently fighting off a viral infection and both feel miserable. Keira has learned to say "Nose Hurt!" This morning she woke up with what looked like a black eye and then later on started having some drainage. Yep, she has developed pink eye. Poor girl, you can't explain to her that this will pass and she'll feel better soon.
This year, despite the facts that Keira and Jason are both currently sick and Erin is working nights, we are looking forward to a truly joyous and wonderful Christmas. Our little girl is doing great and we are incredibly grateful. This will be our best Christmas ever as we celebrate God's goodness. As we celebrate God's greatest gift of His Son, we cannot help but be acutely aware that He has also given us the incredible gift of our daughter. Merry Christmas!
Jason, Erin, and Keira Grace
Saturday, December 22, 2007
Monday, December 17, 2007
December 17, 2007 - scans but no results
Today we had two more tests, a CT of the chest, and an echocardiogram (to check Keira's heart). From Keira's perspective, today was so much more. At 6:30, we woke her up since we had to quit feeding her by 7 so she could have her CT. For about 15 minutes, all she could do was rub her eyes and say "bright". We finally succeeded in getting a few bites of oatmeal and some berries down her. Basically, we managed to wake her up early so instead of just being hungry, she would be hungry and tired. Don't try this one at home!
We arrived at Children's at 11am. Keira is beginning to recognize it, and only tolerates the place because it has trains. We took her to see the trains, which was a great hour, however at noon, we were called back to radiology. She immediately knew what was up, and quite understatedly voiced her displeasure. After a few minutes, it was as if she was resigned to her fate. She settled down and quietly watched Baby Einstein while other children cried around us. She managed to fall asleep, just in time for them to wake her up by starting her IV. Not a pleasant way to wake up! Keira's CT happened around 2, which in the grand scheme of things is fairly prompt. Up until this point, she'd really been a champ, but now we had to ask her to undergo yet another test.
We walked upstairs and checked into Cardiology and Jason went to grab some food for the hungry baby. We managed to get a roll into Keira before we got called back for her echo. Keep in mind that it is now 3:30, all she's had to eat is a roll, she's been up since 6:30 and hasn't had more than 10 minutes of a nap. She did amazingly well during the echo. She told them NO several times, but for the most part whimpered here and there and then let them do what they needed to. Once the technician said "OK we're finished" Keira all but clawed her way into Erin's arms. She had had enough. You know how when kids are upset they'll let out one cry and then there is that long pause while they work themselves up for the really big one? Keira's long pause lasted long enough for us to get all the way out of Cardiology and into the hallway before the cry came. She just wanted to make sure that we knew that she had been very good, but that was the last test she would tolerate for the day.
We left as quickly as we could to respect her wishes, but this means we don't have any results yet. We don't expect bad news, but we will rest easier once we know that our expectations are true. We will update as we know more. Next time you see Keira, let her know what a true trooper she is. She handled today much better than most adults I know would have.
Jason, Erin, and Keira Grace
We arrived at Children's at 11am. Keira is beginning to recognize it, and only tolerates the place because it has trains. We took her to see the trains, which was a great hour, however at noon, we were called back to radiology. She immediately knew what was up, and quite understatedly voiced her displeasure. After a few minutes, it was as if she was resigned to her fate. She settled down and quietly watched Baby Einstein while other children cried around us. She managed to fall asleep, just in time for them to wake her up by starting her IV. Not a pleasant way to wake up! Keira's CT happened around 2, which in the grand scheme of things is fairly prompt. Up until this point, she'd really been a champ, but now we had to ask her to undergo yet another test.
We walked upstairs and checked into Cardiology and Jason went to grab some food for the hungry baby. We managed to get a roll into Keira before we got called back for her echo. Keep in mind that it is now 3:30, all she's had to eat is a roll, she's been up since 6:30 and hasn't had more than 10 minutes of a nap. She did amazingly well during the echo. She told them NO several times, but for the most part whimpered here and there and then let them do what they needed to. Once the technician said "OK we're finished" Keira all but clawed her way into Erin's arms. She had had enough. You know how when kids are upset they'll let out one cry and then there is that long pause while they work themselves up for the really big one? Keira's long pause lasted long enough for us to get all the way out of Cardiology and into the hallway before the cry came. She just wanted to make sure that we knew that she had been very good, but that was the last test she would tolerate for the day.
We left as quickly as we could to respect her wishes, but this means we don't have any results yet. We don't expect bad news, but we will rest easier once we know that our expectations are true. We will update as we know more. Next time you see Keira, let her know what a true trooper she is. She handled today much better than most adults I know would have.
Jason, Erin, and Keira Grace
Wednesday, December 5, 2007
December 5, 2007 - Happy Birthday Dada
I can't believe how fast time is flying by! Keira is now officially 6 months out from chemo. She is off her antibiotics, and is resuming a normal vaccination schedule. Her port is out. Her hair is growing. She looks like a perfect little Christmas elf!
Keira will have one more CT scan before the end of the year on Dec. 17th. We hope to have her heart rechecked at that time. One of the medicines she received is toxic to the heart, so she will need to be watched for quite some time. Her most recent labwork looked great. At this point, we will continue to do monthly blood and urine checks and gradually space her CT scans out. We are truly blessed by this miracle.
Many of you may have last minute shopping to do. I would encourage you to take a peek at the band of parents website. http://www.bandofparents.org They are a group of parents with children who have neuroblastoma who are working together to raise money for more research and better treatments. They have some cute gifts and beautiful holiday cards. Take a peek for a great cause!
I want to say happy birthday to my amazing husband who has been such a strength to me throughout our marriage, but especially this past year. Thank you. Oh, and Keira says "Hap Dada!" - maybe next year we'll get to hear Happy Birthday : )
Erin and Keira Grace
Keira will have one more CT scan before the end of the year on Dec. 17th. We hope to have her heart rechecked at that time. One of the medicines she received is toxic to the heart, so she will need to be watched for quite some time. Her most recent labwork looked great. At this point, we will continue to do monthly blood and urine checks and gradually space her CT scans out. We are truly blessed by this miracle.
Many of you may have last minute shopping to do. I would encourage you to take a peek at the band of parents website. http://www.bandofparents.org They are a group of parents with children who have neuroblastoma who are working together to raise money for more research and better treatments. They have some cute gifts and beautiful holiday cards. Take a peek for a great cause!
I want to say happy birthday to my amazing husband who has been such a strength to me throughout our marriage, but especially this past year. Thank you. Oh, and Keira says "Hap Dada!" - maybe next year we'll get to hear Happy Birthday : )
Erin and Keira Grace
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3/9/2008 - Celebrating one year from diagnosis
Stylin at the Easter Egg Hunt!
2 years and I still love cake!
First trip to the zoo - a great reward after a long day at Childrens!
- and I even got to hold a bird!
I see how long it's taking mommy to get through - I'd better get started now!
PIGTAILS!
First day of school with best friend Ellie
How am I going to stick this landing?
The Fam
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