Friday, August 31, 2007

August 31, 2007 - This Wonderful Day

Today is a good day . . . today the doctors gave us amazing news that I believe I am still digesting. It is news I can hardly believe: Keira is beating the cancer.

I will post the details in a minute, but for those who have been with us the whole time and for those who joined along the way, I feel compelled to take a short journey back to what our lives have been like since March 9, 2007. Following you will find some short quotes from previous posts. If you have the time, take a minute and see what God has faithfully brought us through. I have listed the date the entry was posted and then just a brief section that describes something we were going through.

. . . march 9, 2007 "Friday night March 9, 2007 our little girl was diagnosed with cancer. It was the most difficult news either one of us had ever heard. That evening we could barely hold it together and honestly thought it was nightmare we would eventually wake from."

. . . march 15, 2007 "Our familes are doing all they can, but live in different states. However, we do not feel alone. We not only feel our families' love, but we feel the love of church of God . . . it is a testimony to what it means to be a believer in Jesus Christ."

. . . march 26, 2007 "We also know that while our family needs the results to be good, God does not. If God is going to heal our little girl, we must believe that He will heal her no matter the prognosis. Percentages mean nothing to God. I know this in my mind and my heart is trying to hold onto to this truth, but it is hard at this moment in time when it is my daughter's life that is the percentage we are talking about. All morning I have been singing this song:

Great is Thy faithfulness, O God my Father; There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not; As Thou hast been, Thou forever will be. Great is Thy faithfulness! Great is Thy faithfulness! Morning by morning new mercies I see. All I have needed Thy hand hath provided; Great is Thy faithfulness, Lord, unto me!

My singing is not yet because I feel this truth completely in my heart and emotions, but because I know it is true, because I need it to be true, because God is truly all we have at this moment. "

. . . march 29, 2007 "Today at 1:00 pm, Keira Grace goes goes in for her first round of chemo. We feel like this is a turning point. The tests are over; the war begins. We have seen in our little girl a strength that defies her age, that defies her little body, that is going, with God's help, to defy this cancer . . . she is not giving in and neither are we."

. . . april 21, 2007 "So far this round has been worse. She has thrown up multiple times, including twice this evening. She is also starting to lose her hair. Please pray for her. It is hard to put into words how it feels to hold this little girl while she cries and vomits in the middle of the night."

. . . april 23, 2007 "She is not yet herself, but this afternoon, the pre-chemo Keira showed her face. After 3 days of fussiness and other more unpleasant experiences, it was a relief and a joy to see little Keira Grace waving her rattles around and trying for long periods of time with such a serious demeanor to open a pink plastic egg. That is the little girl who regularly owned our home prior to her chemo treatments, the girl who almost got lost under the weight of toxic chemicals they had to pump into her little body."

. . . may 10, 2007 "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. "

. . . may 20, 2007 "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. "

. . . June 1, 2007 "Keira did very well today. We should be used to it by now, but we are still in awe of our 13 month old who takes in stride what would make either of us fall apart.

. . . june 22, 2007 "Today, things have changed. This war is not over, but the field of battle looks very different now. Today we experienced a victory that we prayed for and believed for and rejoiced knowing that others prayed along with us. The results of the MIBG scan came back today. I can hardly type those results out because part of me still does not believe it. There is good improvement in the size of the main tumor in her chest, and there is no sign of the cancer in her bones."

. . . july 9, 2007 "Finally the test results came today . . . We proceed with surgery tomorrow, as planned. We are nervous about this. Even though we have discussed this with both the surgeon and the oncologist to the point that I'm sure both of them feel exhausted, we still don't know what to expect. We pray that God will guide the surgeon's hands to get all of the tumor, without injuring any nerves . . . We have been asked to trust God in ways that we never thought possible over the past few months. Tomorrow we will be asked to do this again."

. . . july 20, 2007 "About 12:00 pm last night, Keira got very restless. Normally, she will put herself back to sleep, but not last night. We had to get up with her and hold her and rock her and it still took a long time to settle her down. She then woke up again around 3:00. This time, she had a fever of 101.5. For cancer patients that means a trip to the ER. So, about 4:00 am, we took Keira to Children's. We have been so blessed that this hasn't happened before. "

. . . august 3, 2007 "Keira's doctors called us today and told us that the urine tests were essentially unchanged and still normal. Combined with the fact that her scans showed that the tumor in her chest hasn't changed, they feel comfortable continuing to watch her. We will go back in a month to repeat both the CT and the urine tests and make sure that they continue to be stable. We are grateful for this news, and we hope and pray that her tests in a month will show similar results. "

Today 8/31/2007 -- It is amazing to look back on the past 6 (yes 6) months. After all this time, I can palpably feel the fear and pain we felt when we learned of Keira's diagnosis. Tonight we found out that Keira's tumor continues to shrink - while she is off treatment. This is incredibly encouraging to us and means that Keira gets to continue to be off chemo. Neuroblastoma is a very unpredictable disease and children have had recurrances after years of being disease free, however this is not the usual pattern. The fact that Keira's tumor is shrinking makes it very likely that it will continue to shrink and that our wonderful precious daughter will get to live a normal life. We are so grateful for these results. We know that Keira will never be truly out of the woods, but we feel that we have just entered a clearing in the trees. We'll take it!

Right now our little girl is sleeping peacefully, and tonight we will sleep in a kind of peace we have not known for a long time.

Thank you for your prayers. Thank you for remembering us. Keira's doctors have been wonderful. God has been exceedingly faithful and good to us.

Jason, Erin and Keira Grace

Wednesday, August 29, 2007

August 29, 2007 - Home again

Just a quick update to let you know we are home from the tests and things went well. Despite the fact that Keira's CT was delayed by 2 hours (remember she can't eat or drink before them) and didn't go for her scan until noon, she did great. When it was over and she was coming out of sedation, she was pretty cranky. She finally woke up enough that we could feed her and once she drank a bottle she fell asleep immediately. She was a champ through it all!

Her doctor thinks she looks great and should have the results of her tests for us in the next couple of days. Thank you for your prayers and e-mails. We definitely felt them at work this morning as our hungry girl kept her composure remarkably well. We will let you know as soon as we hear any news.

Jason, Erin, and Keira Grace

Sunday, August 26, 2007

August 26, 2007 - Weekly update

Keira has had a truly wonderful week. She is enjoying learning new things on a seemingly daily basis. The other day we caught her walking around the house with a stuffed duck over her shoulder, patting it on the back, and saying " Ooooh, Duck" Very sweet. She loves balls and will hand them to you to throw to her and then squeal in delight when she catches one. She has also discovered the "mega legos" and will spend up to an hour at a time building with them.... and then tearing her tower down and saying "Crash crash crash!" She is also quite technically savy. Tonight she entertained her grandparents in South Dakota via her webcam showing them just how good she is at sliding down her slide... and then prompting them to clap and cheer in case they didn't know when the appropriate time for applause was.

Keira will have her CT on Wednesday along with bloodwork, urine tests and a physical exam. We pray that all these things will continue to show good results. We have been sheltering her from the "general population" over the past few days in preparation since she can't have the CT done if she is running a fever or even has a cold.

We continue to be so grateful for how well Keira is doing through this. We will put a post up when we know the results of her tests.

Jason, Erin, and Keira Grace

Monday, August 20, 2007

August 20, 2007 - Life as normal?

It has been quiet here recently. After having been given the ok from Keira's doctors to resume normal activities we have slowly been reintroducing Keira to the outside world. She has had the opportunity to play with other kids, play with rocks, go swimming and do other things that for a while we had to be careful with (if we let her do them at all). Keira seems to be taking all this in stride. She's not sure she likes the church nursery, but who can blame her. She's had so many strangers poking and prodding her that it's hard to blame her for being a little nervous when she sees someone new.

We have discovered that Keira minds her puppets better than she minds us. She has become fairly good at pointing to different parts of her body (eyes, ears, nose) when asked to, however she will only do it if she feels like it. Now, if her puppet asks her to point to her ears, she gladly jumps up, points to her ears, giggles, and then gives her puppet a kiss. Amazingly this works for talking too. Today her puppet asked her to say APPLE - and she said it for the very first time. Whenever we ask her to say something, she just looks at us like we're crazy. (Who's the one following the commands of a puppet - huh?)

We are trying to resume life as normal also. Erin will be resuming a full schedule next week and the school year begins on Wednesday. Even as we make these transitions, we know that we will never feel "normal." Life is not as simple as it used to be.

Keira should be getting more tests next week. Please continue to pray that her tumor is shrinking. Please also continue to pray for the other children fighting this terrible disease. Many are not as fortunate as Keira has been. As always, we are grateful for the support and prayers you share with us.

Jason, Erin and Keira Grace

Sunday, August 12, 2007

August 12, 2007

You know that something is not quite right when you are surprised that your little girl has hair. My little girl has hair! Yeah, she still looks like she has a buzz cut, however, compared to her previous balding head with little wispy strands shooting off randomly in all direction like an old man, she looks amazing. And it is so soft. Her head feels like a little puppy.

Besides for gaining hair, Keira is doing very well. She is learning what more and more words mean, how to communicate better and how to manipulate mom and dad. The funny thing is we know at times she is trying to manipulate us and we still can't say no. She is just so darn cute!

We still have close to three weeks until her next scan. We are eagerly waiting for that scan and praying that this dang tumor is shrinking this time and not just stable. Until then, we hold on to God, give thanks for our friends and continue to love on our daughter.

Jason, Erin and Keira

Saturday, August 4, 2007

August 3, 2007 - more test results

Keira's doctors called us today and told us that the urine tests were essentially unchanged and still normal. Combined with the fact that her scans showed that the tumor in her chest hasn't changed, they feel comfortable continuing to watch her. We will go back in a month to repeat both the CT and the urine tests and make sure that they continue to be stable. We are grateful for this news, and we hope and pray that her tests in a month will show similar results.

Over the next few weeks, there won't be any new information to post, but we probably won't be able to resist a few posts to tell you about something Keira has done. We know that all parents feel this way, but we really do think we have an amazing little girl and we are so proud of her.

Jason, Erin, and Keira Grace

Wednesday, August 1, 2007

August 1, 2007 - Scan results

Luckily, Erin has an "in" with the radiology department over at Children's so she was able to go look at Keira's scan about 10 minutes after it was finished and find out the results. The good news is that the tumor has definitely not increased in size. It looks like the mass is pretty much the same. We were hoping that it might be smaller, but that doesn't appear to be the case. We don't know what this will mean as far as further testing or treatment for Keira. We dropped some urine off today to be tested for tumor products and that might help guide this decision process one way or the other. We hope that the urine tests will show improvement which would likely make her doctors comfortable with watching and waiting. If the urine tests are worse, it will likely mean more treatment. At this point we really don't know. We promise to update when we know more about the results Keira's other tests and what it all means.

On a lighter note, a little update on Keira's normal life. She continues to eat well and has grown an entire inch in the last 2 weeks! Everyone at the hospital today commented that she looked taller so we decided to measure her on her doorframe when we got home. We had measured her 2 weeks ago and everyone was correct, she is in fact taller. Amazing what happens when you get rid of chemo for a while isn't it!

An update on Charli (her link is to the right). Her tumor is shrinking. This is fantastic news! Thank you for your prayers for all of these kids.

Jason, Erin, and Keira Grace

About Me

At the age of 10 months, Keira was diagnosed with stage IV neuroblastoma. She has completed 4 rounds of chemotherapy and 2 surgeries. She has had a wonderful response to therapy and now has only a small mass left in her chest.

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!


First day of school with best friend Ellie

How am I going to stick this landing?

The Fam

Keira's first cake




Daddy & Me

Daddy & Me