This morning began much like yesterday ended. Keira woke up happy and then very quickly became very sick. We opted not to give her the nausea medicine after she threw up because she hates it so much it often makes her get sick again. The great news is, once we got in the car to go to the hospital, she fell asleep. She had a good day in the clinic, and a good afternoon. She seems tired, but hasn't had any more vomitting. We are so grateful. We don't know what the rest of the night has in store, but for right now, our baby is resting peacefully and doesn't seem to be feeling badly at all. Thank you for praying for her during this.
Jason, Erin, and Keira Grace
Thursday, May 31, 2007
Wednesday, May 30, 2007
May 30, 2007 - Round 4
Today we started Round 4. We arrived at the hospital around 9 am and checked in, had her height, weight, temperature and blood pressure checked, and then waited to be examined. About 9:45 a "Code grey warning" sounded. Flashing lights went off and the nursing supervisor came around to let us know that we were having bad weather and couldn't be near windows. The infusion room (where the kids get their chemo) is made up of one whole wall of windows - so this delayed things a bit while they found other places to get things started. Then about 10:15 a "Code red" (fire) sounded for the sixth floor - the floor we are on. It turns out that they are doing construction down the hall and something set the fire alarm off. All in all, not the most peaceful way to start a chemo day, but we got things going around 11 which wiith all things considered, wasn't too bad.
Keira handled the day like a champ. She took a good nap for us in the afternoon (a first for her at the hospital) and that made the afternoon MUCH smoother. She didn't lose her cool once. She ate well, watched other kids, watched baby einstein, and let out some delighted laughs at the baby einstein duck when it quacked! This was a little out of character for the infusion room, but no one complained.
Tonight is a different story. She already is feeling poorly and despite the fact that we are being religious about giving her the nausea medicine, she is throwing up. She has woken up multiple times crying and just doesn't seem to feel well. We are asking for you to pray for her tomorrow and Friday. During round 2 (where she received the same medicine), Keira also reacted with more nausea and restlessness. We were expecting this. The difference is, she still has 2 more days to go through - Round 2 was only a single day. Please pray for her to not have so much nausea and feel well enough to be comfortable over the next two days of chemo. You all are a tremendous support to us and we are so grateful. Thank you for your continued prayers.
Jason, Erin and Keira Grace
Keira handled the day like a champ. She took a good nap for us in the afternoon (a first for her at the hospital) and that made the afternoon MUCH smoother. She didn't lose her cool once. She ate well, watched other kids, watched baby einstein, and let out some delighted laughs at the baby einstein duck when it quacked! This was a little out of character for the infusion room, but no one complained.
Tonight is a different story. She already is feeling poorly and despite the fact that we are being religious about giving her the nausea medicine, she is throwing up. She has woken up multiple times crying and just doesn't seem to feel well. We are asking for you to pray for her tomorrow and Friday. During round 2 (where she received the same medicine), Keira also reacted with more nausea and restlessness. We were expecting this. The difference is, she still has 2 more days to go through - Round 2 was only a single day. Please pray for her to not have so much nausea and feel well enough to be comfortable over the next two days of chemo. You all are a tremendous support to us and we are so grateful. Thank you for your continued prayers.
Jason, Erin and Keira Grace
Saturday, May 26, 2007
May 26, 2007 - 4th round
Keira's counts came back and are looking good enough to proceed with her next round of chemo. We will have to recheck them on Tuesday, but as long as nothing drastically changes between then and now, she will begin her 4th round this coming Wednesday.
This is a special round. It is her last scheduled round of chemo before she gets imaged again. In about a month, we will finally know whether or not the chemo has been working all this time. Please keep her in your prayers for this last round, especially the first day, which is very long (9 hours or so in the hospital) and consequently very rough on Keira and mom and dad.
Her hair is no longer falling out : ) She is basically sleeping through the night again. She sometimes gets up and has 1 bottle, but last night she made it all the way until 6:30 am. She is having pretty good days as well. Considering everything, we could not ask for a better experience for Keira. The doctors told us from the beginning how well children can handle this compared with adults and Keira is living proof of that.
Since the last post, she has yet to walk, but is cruising very well. Her ability to adapt her sign language is really cool. We taught her the sign for all finished, so we would know when she was done eating. She uses it for that, but she also uses it to tell us when she has no more food on her tray. She will finish her meat and then give us the sign for all finished, which does not mean get me down, but "I have no more meat." She also learned the sign for please a few days back. However, it only kind of means please. It is also like an anger management technique : ) When she can't get something open, she turns her palms up, makes a tight fist and shakes her whole body while growling. It is sort funny and cute, but since we should not laugh at her frustration (you would too if you saw her - it is so adorable), we taught her to say please. Now when she gets really mad, we say, "No, Keira. Say please." And she then rubs her chest instead of doing her little angry shaking thing.
We continue to hold on and believe and look forward to seeing what God will do. Please continue to seek the Lord on her behalf and thank you all for the occasional emails. They still encourage and inspire us as we go through this trial in our lives.
Jason, Erin & Keira
This is a special round. It is her last scheduled round of chemo before she gets imaged again. In about a month, we will finally know whether or not the chemo has been working all this time. Please keep her in your prayers for this last round, especially the first day, which is very long (9 hours or so in the hospital) and consequently very rough on Keira and mom and dad.
Her hair is no longer falling out : ) She is basically sleeping through the night again. She sometimes gets up and has 1 bottle, but last night she made it all the way until 6:30 am. She is having pretty good days as well. Considering everything, we could not ask for a better experience for Keira. The doctors told us from the beginning how well children can handle this compared with adults and Keira is living proof of that.
Since the last post, she has yet to walk, but is cruising very well. Her ability to adapt her sign language is really cool. We taught her the sign for all finished, so we would know when she was done eating. She uses it for that, but she also uses it to tell us when she has no more food on her tray. She will finish her meat and then give us the sign for all finished, which does not mean get me down, but "I have no more meat." She also learned the sign for please a few days back. However, it only kind of means please. It is also like an anger management technique : ) When she can't get something open, she turns her palms up, makes a tight fist and shakes her whole body while growling. It is sort funny and cute, but since we should not laugh at her frustration (you would too if you saw her - it is so adorable), we taught her to say please. Now when she gets really mad, we say, "No, Keira. Say please." And she then rubs her chest instead of doing her little angry shaking thing.
We continue to hold on and believe and look forward to seeing what God will do. Please continue to seek the Lord on her behalf and thank you all for the occasional emails. They still encourage and inspire us as we go through this trial in our lives.
Jason, Erin & Keira
Sunday, May 20, 2007
May 20, 2007 - Faith
After many years of life and many stressful situations--that is when people should lose their hair -- not a 1 year old! Our poor little girl looks a bit like an older guy who has a comb over. She has a lot of longer strands of hair covering up the balding spots.
And yet, she has never looked more beautiful. She has been happier and more playful over the last few days than we have seen her in a long time. It has been such an amazing blessing just to be with her and enjoy her.
She is also getting closer and closer to walking. However, she has discovered that falling straight forward and hoping that we will catch her is much more exciting than walking. She looks at us, laughs and falls forward into our arms. Sometimes she even decides to fall backwards or sideways. She just likes falling and letting us catch her.
Watching my little girl, I learned a valuable lesson about faith. She stands on her own, looks around and then falls over in some random direction. She doesn't look around to make sure we will catch her. She just knows that when she falls, mommy and daddy are going to be there. She trusts in that so intuitively that the falls not only do not scare her, she enjoys them. They make her giggle and she frantically asks for more.
That is the trust God is teaching our family. It is not about answers for us. We do not know God's plan, but we know God. And when we fall, He is there. In these days while we wait for her last round, while we wait for those scans that come in June, while we wait to hear whether or not she has been cured, all we can do is believe in an almighty, good God and trust that He is going through this with us. Jesus called it faith like a child. I have seen that faith. I want that faith. It is what will sustain us.
When we began this journey, Erin got a picture storage box about the size of a large shoebox. We wanted to save the cards that people sent to Keira so that one day we could show her how much she is loved and how many people care about her. Our shoebox is overflowing and we have a pile next to it, almost the size of another box. We are so grateful to all of you for supporting and encouraging us. It seems like at least a couple times a week, we are brought close to tears by the thoughtfulness and generosity of someone or some group of people. We know we are not alone, and we know we cannot do this alone. There is no way for us to be able to adequately thank each of you, but please know that we are so grateful and draw tremendous strength from your help and encouragement.
Please continue to pray for Keira, especially for her red blood count, which is very low right now making her extra tired and if it drops too much lower, she may have to have a blood transfusion. So, please pray for her.
And this is what I hold onto as I pray: "Now to him who by the power that is working within us is able to do far beyond all that we ask or think, to him be the glory in the church and in Christ Jesus to all generations, forever and ever."
May God bless you. Thank you
Jason, Erin & Keira
And yet, she has never looked more beautiful. She has been happier and more playful over the last few days than we have seen her in a long time. It has been such an amazing blessing just to be with her and enjoy her.
She is also getting closer and closer to walking. However, she has discovered that falling straight forward and hoping that we will catch her is much more exciting than walking. She looks at us, laughs and falls forward into our arms. Sometimes she even decides to fall backwards or sideways. She just likes falling and letting us catch her.
Watching my little girl, I learned a valuable lesson about faith. She stands on her own, looks around and then falls over in some random direction. She doesn't look around to make sure we will catch her. She just knows that when she falls, mommy and daddy are going to be there. She trusts in that so intuitively that the falls not only do not scare her, she enjoys them. They make her giggle and she frantically asks for more.
That is the trust God is teaching our family. It is not about answers for us. We do not know God's plan, but we know God. And when we fall, He is there. In these days while we wait for her last round, while we wait for those scans that come in June, while we wait to hear whether or not she has been cured, all we can do is believe in an almighty, good God and trust that He is going through this with us. Jesus called it faith like a child. I have seen that faith. I want that faith. It is what will sustain us.
When we began this journey, Erin got a picture storage box about the size of a large shoebox. We wanted to save the cards that people sent to Keira so that one day we could show her how much she is loved and how many people care about her. Our shoebox is overflowing and we have a pile next to it, almost the size of another box. We are so grateful to all of you for supporting and encouraging us. It seems like at least a couple times a week, we are brought close to tears by the thoughtfulness and generosity of someone or some group of people. We know we are not alone, and we know we cannot do this alone. There is no way for us to be able to adequately thank each of you, but please know that we are so grateful and draw tremendous strength from your help and encouragement.
Please continue to pray for Keira, especially for her red blood count, which is very low right now making her extra tired and if it drops too much lower, she may have to have a blood transfusion. So, please pray for her.
And this is what I hold onto as I pray: "Now to him who by the power that is working within us is able to do far beyond all that we ask or think, to him be the glory in the church and in Christ Jesus to all generations, forever and ever."
May God bless you. Thank you
Jason, Erin & Keira
Sunday, May 13, 2007
Happy Mother's Day
In honor of Mother's Day, I thought it fitting that mom wrote an entry for a change. Keira continues to amaze us with how well she is doing. She is maybe a little tired, but other than that, this round has been much easier on her than the last. She continues to be curious and playful. She is a big fan of music, and today she spent about 30 minutes learning how to work the CD player. She can now put her favorite CD in and press play. This girl knows how to get what she wants!
On Wednesday, her oncologists took a urine sample to run some tests. At the beginning of all this, they ran urine catecholamines. This is the test that they used to initially confirm the diagnosis of neuroblastoma. There are two parts to this: VMA and HVA. These have now changed
Before her treatment (3/9): VMA - 232.8 HVA - 61.7
After some treatment (5/9): VMA - 47.1 HVA - 23.7 .
Her VMA is still elevated, but her HVA has returned to normal.
What does this mean? We're not sure because there are mixed opinions about following these numbers during treatment. However, Jason and I, and Keira's oncologists are taking this as positive news. This indicates that the chemo is doing something. We still have to wait until mid-June to do more scans and see exactly how much the chemo has done, but these results were encouraging to us, and make the remaining wait time a little easier.
On a personal note, I have received many cards for Mother's Day with encouraging messages and wishes for a wonderful day. To all of you - Thank you. This has truly been a wonderful Mother's Day. I spent the day with a precious adorable little girl who seems to think I'm wonderful. When I became a parent, I developed this fear that something would happen to my daughter. I have had to face that fear in a way I never wanted to and would change in a heartbeat if I could. In the midst of this though, I have received a tremendous gift. I cherish every day that I have with Keira. I take special moments - every day - to sit with her and read a book, or learn that flowers are fun to smell. I took these moments for granted before, and I don't think I ever will again. Each day we have with her is a gift, and we hope and believe that there will be many more, but each one will have so much more meaning than it could have. We count each day as a blessing.
Happy Mother's Day
Jason, Erin and Keira Grace
On Wednesday, her oncologists took a urine sample to run some tests. At the beginning of all this, they ran urine catecholamines. This is the test that they used to initially confirm the diagnosis of neuroblastoma. There are two parts to this: VMA and HVA. These have now changed
Before her treatment (3/9): VMA - 232.8 HVA - 61.7
After some treatment (5/9): VMA - 47.1 HVA - 23.7 .
Her VMA is still elevated, but her HVA has returned to normal.
What does this mean? We're not sure because there are mixed opinions about following these numbers during treatment. However, Jason and I, and Keira's oncologists are taking this as positive news. This indicates that the chemo is doing something. We still have to wait until mid-June to do more scans and see exactly how much the chemo has done, but these results were encouraging to us, and make the remaining wait time a little easier.
On a personal note, I have received many cards for Mother's Day with encouraging messages and wishes for a wonderful day. To all of you - Thank you. This has truly been a wonderful Mother's Day. I spent the day with a precious adorable little girl who seems to think I'm wonderful. When I became a parent, I developed this fear that something would happen to my daughter. I have had to face that fear in a way I never wanted to and would change in a heartbeat if I could. In the midst of this though, I have received a tremendous gift. I cherish every day that I have with Keira. I take special moments - every day - to sit with her and read a book, or learn that flowers are fun to smell. I took these moments for granted before, and I don't think I ever will again. Each day we have with her is a gift, and we hope and believe that there will be many more, but each one will have so much more meaning than it could have. We count each day as a blessing.
Happy Mother's Day
Jason, Erin and Keira Grace
Thursday, May 10, 2007
May 10, 2007 - The Next Round
Nine hours on Wedneday . . . 5 hours today . . . 5 hours tomorrow . . . and another round over.
We are close to overcoming the third round of chemo and Keira is doing amazing! Her last round was so horrible, but so far this round, though long, has really not been bad. In a way you could almost say it has been good. What do I mean? Keira actually slept through the night last night for the first time in over 8 weeks. It was beautiful. Not only that, but she has not thrown up yet and she even seems a little happier, a little brighter than she has been in weeks. We do not understand it, but we are not complaining.
On top of all that, she is standing up on her own!!! On her own!!! It started as kind of a trick. We knew she could balance because she would accidentally do it on occasion. So, we started standing her up and handing her pieces of bread. She got so engrossed in the bread that she forgot that no one was holding her up. Eventually, she would look around and suddenly her eyes would grow wide and you could see the recognition on that precious little face that she was in fact holding herself up and she would promptly fall on her butt. However, in the last day or so, she has discovered that she can in fact stand up on her own without help. Tonight, she was standing at her little music table. She would play a song, lean back away from the table, lift her hands over head and swing those cute little arms around like a minature cheerleader and then smile. I think she is actually enjoying standing up.
Finally, while she has said a few words by now such as duck, dog, dada, mama, fish and shoe, none of those words have been real clear. Duck is "du" and dog is "do" and shoe is "sh" -- well, she has really said a word now. Her first real word is "NO!" -- and she says it very emphatically and very uses it very appropriately. She even swings her arm at you while she says it. That's our sweet little angel : )
For everyone who has supported us, we love you and we thank you and we need you and we want you to know that our daughter means more to us than anything in this world and when you do something for her, you do something for us that we will never be able to fully thank you for, never be able to really express how much it means to us. Thank you for helping us take care of our baby.
Jason, Erin and Keira Grace
We are close to overcoming the third round of chemo and Keira is doing amazing! Her last round was so horrible, but so far this round, though long, has really not been bad. In a way you could almost say it has been good. What do I mean? Keira actually slept through the night last night for the first time in over 8 weeks. It was beautiful. Not only that, but she has not thrown up yet and she even seems a little happier, a little brighter than she has been in weeks. We do not understand it, but we are not complaining.
On top of all that, she is standing up on her own!!! On her own!!! It started as kind of a trick. We knew she could balance because she would accidentally do it on occasion. So, we started standing her up and handing her pieces of bread. She got so engrossed in the bread that she forgot that no one was holding her up. Eventually, she would look around and suddenly her eyes would grow wide and you could see the recognition on that precious little face that she was in fact holding herself up and she would promptly fall on her butt. However, in the last day or so, she has discovered that she can in fact stand up on her own without help. Tonight, she was standing at her little music table. She would play a song, lean back away from the table, lift her hands over head and swing those cute little arms around like a minature cheerleader and then smile. I think she is actually enjoying standing up.
Finally, while she has said a few words by now such as duck, dog, dada, mama, fish and shoe, none of those words have been real clear. Duck is "du" and dog is "do" and shoe is "sh" -- well, she has really said a word now. Her first real word is "NO!" -- and she says it very emphatically and very uses it very appropriately. She even swings her arm at you while she says it. That's our sweet little angel : )
For everyone who has supported us, we love you and we thank you and we need you and we want you to know that our daughter means more to us than anything in this world and when you do something for her, you do something for us that we will never be able to fully thank you for, never be able to really express how much it means to us. Thank you for helping us take care of our baby.
Jason, Erin and Keira Grace
Saturday, May 5, 2007
May 5th, 2007 - Next Round Soon
It feels a little strange. We have this very sick little girl who is as happy as can be. We know that there is this terrible enemy presence lodged inside of her and spreading its army throughout her bones, and yet, she stands in front of her bookshelf, pulling every book she has off, one by one as she talks to herself. She looks like she is having a little conversation with each book, deciding the merits of each book before joyfully dumping it off onto the ground. Every once in a while she looks back at us and giggles and then returns to the serious work of book dropping. We continue, everyday, to thank God that Keira is not feeling what we feel . . . that she has no idea what is going on and is simply enjoying life.
This Wednesday she starts her next round. It will be 3 days. Please pray for her and for the side effects. That first day will hard: all day in the hospital without a room, just a recliner and TV. Not an easy day for anyone, but especially Keira.
We wanted to thank all the students and parents from TCA who have been providing dinners for us so regularly. It means so much to us. We have also begun to recieve medical bills and Erin is having to take some days off for chemo. We have started to recieve a few checks for the trust this week and we are very grateful to those who have given because it will help us greatly to offset some of the finanical burden during this time. And, honestly, it is very encouraging to receive those checks, e-mails, and cards because it reminds us that we are not alone. So, for those of you who are contacting us, we thank you from the depth of our hearts.
We pray everyone is doing well. We are forever grateful for your prayers, your emails, and everything else you are doing for our family.
Jason, Erin & Keira
This Wednesday she starts her next round. It will be 3 days. Please pray for her and for the side effects. That first day will hard: all day in the hospital without a room, just a recliner and TV. Not an easy day for anyone, but especially Keira.
We wanted to thank all the students and parents from TCA who have been providing dinners for us so regularly. It means so much to us. We have also begun to recieve medical bills and Erin is having to take some days off for chemo. We have started to recieve a few checks for the trust this week and we are very grateful to those who have given because it will help us greatly to offset some of the finanical burden during this time. And, honestly, it is very encouraging to receive those checks, e-mails, and cards because it reminds us that we are not alone. So, for those of you who are contacting us, we thank you from the depth of our hearts.
We pray everyone is doing well. We are forever grateful for your prayers, your emails, and everything else you are doing for our family.
Jason, Erin & Keira
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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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