December 21. 2007 - Results are in

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

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

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

November 22, 2007 - Giving Thanks!

Looking back on the year, we have so much to be grateful for. We give thanks to God for Keira. We are grateful for her wonderful response to treatment, and for the absence of complications through her treatment. We truly have seen a miracle. We are grateful that we are able to look at each day as a gift. We are not guaranteed a certain amount of time with anyone - we realize that now. Every day we have as a family is one that we cherish. Our eyes have been opened to the amazing family and friends we have. We have been shown love far beyond what we deserve or can repay. Thank you. We are grateful for others we have met along the journey who are walking this same road. They are an incredible inspiration to us and have supported us in ways they will never know.

Thank you. We hope you each has a wonderful Thanksgiving

Jason, Erin, and Keira Grace

Nov 6, 2007 - It's Out!

Keira did great today, and so did Children's. We showed up at 7:00am in presurgery, prepared for a long day. We had books, dvds, blankets etc. At 8:15 they took Keira back for surgery and she was done by 9. She woke up easily without any real fussiness, and we were allowed to leave by 11. We could not have asked for things to have gone any more smoothly! Keira is doing great and had a good day - once we got some food in her. : )

The plan remains to watch closely. We will keep you posted as she has new test results, but for now we are looking forward to putting some funny stories about her adventures on the blog. We are still planning her celebration party and will send out info once we have plans finalized.

Thank you always for your prayers. Keira is a very blessed little girl to have so many praying for her. We honestly did not expect her to complete chemo with so few complications and with such wonderful results. We feel like we have been given a huge gift.

Jason, Erin, and Keira Grace

Nov 5, 2007 - Tomorrow

Tomorrow is a great day! At 7:00 am we will be checking Keira in at pre-surgery to have her port removed. We eagerly covet your prayers that everything runs smoothly and tomorrow night we will bring Keira home portless for the first time in many months!

We will post again to let everyone know how it went. Thank you

Jason, Erin and Keira Grace

October 31, 2007

The rest of Keira's tests came back today and look good. This means she will be getting her port out in a couple of weeks, we are still waiting on the exact date. This feels like a big step to us. Within the next month, Keira will stop taking antibiotics on a regular basis to prevent infections, she will have her port removed, and she will be able to start catching up on the vaccines she missed over the past 9 months. We hear stories and watch those that we know fighting this battle, and we have seen where there was no evidence of disease, only to have a tragic relapse. We will never be able to feel safe, but right now we are at the best possible place we could be and for that we are very grateful.

We want to extend a huge thank you to all of you. When Keira was diagnosed, Erin took time off work and medical expenses accumulated rapidly. We have been overwhelmed by the outpouring of generosity from family and friends, but also from many we haven't met. We want to share with you that your generosity allowed us to be with Keira when she needed us most, without having to give thought to how we were going to pay for her treatment. As we look and plan for the future, and sort through the bills from the past 9 months, we are so happy to say that your generosity met our needs exactly. THANK YOU!!! We will never be able to repay each of you, but hope that one day we will be able to do the same for someone else in our shoes.

In light of all this good news, we feel a celebration is called for. We would like to hold a party in honor of Keira and her brave fight, and to honor all of you who have supported us emotionally, financially, and spiritually through this. We have a couple of dates in mind but won't be able to finalize plans until after we have her surgery date, so check back later!

Thank you for walking with us through this.

Jason, Erin, and Keira Grace

October 27, 2007 - New news

A little news. Keira went back on Friday for more labwork and scans. Her labwork is still pending, but her scans looked the same to slightly better than before. Keira did great throughout the day despite having a late afternoon scan and not being able to eat all day. After a long day at the hospital, she had a rough nite. She fevered on and off all night to the point that we worried we would have to take her back in. Luckily it never reached 101.5, and this morning she was back to normal. We think it must have been a reaction to her flu vaccine.

We will update again with the results of her labwork.

October 2, 2007 - quick update

The remainder of Keira's tests came back normal. Normal is good! We are on track for her next scan at the end of this month with the possibility of removing the port if things look good. We are counting the days : )

Please continue to pray for our friend Kate. She is getting her scans done this week after having had 8 rounds of chemo. They found out some good news today and are eagerly awaiting the results of an MIBG at the end of the week. Pray they will receive only good news this week and that Kate will soon be declared NED (No Evidence of Disease)

Thank you for your prayers and support!

Jason, Erin and Keira Grace

September 30, 2007 - Thank you!

Keira continues to do well. She had an appointment down at Children's this past week where aside from some low blood counts everything looked good. We are still waiting on the results of her urine tests, but don't expect that they will be abnormal. Her doctor was happy with her progress and plans to repeat her scans next month. If everything still looks good, she will get her port out! That will be great!

We wanted to thank you all for your support and efforts on Keira' behalf. I received the following e-mail today and wanted to share it with all of you. The letter is from the Children's Oncology Group (COG) regarding the Conquer Childhood Cancer Act:

Throughout September, parents, grandparents, survivors, nurses, physicians, friends and families have sent more than 4,000 letters to Members of Congress, to tell them that funding childhood cancer research needs to be an urgent national priority. These letters have effectively conveyed to our national leaders what childhood cancer feels like: from the life-altering day of being told of a child’s cancer, through the long and difficult days of treatment, to many examples of courage and inspiration from the children, to the promise of a cure mixed with the devastation of loss.
The power of your letters has been overwhelming. On September 25th, in honor of Childhood Cancer Awareness Month, Congressional resolutions were passed in both the House of Representatives and the Senate, expressing the intent of Congress to "…support efforts to increase childhood cancer awareness, treatment and research."
This month alone, the strength of your letters has influenced another 26 Members of Congress to become co-sponsors of the Conquer Childhood Cancer Act, bringing the running total to 146 Representatives and 37 Senators. We edge closer every day to passage of this legislation, which will make a meaningful difference in the lives of every child diagnosed with cancer - today and in the years to come.
On behalf of the more than 5,000 Children’s Oncology Group researchers who devote their lives to curing childhood cancer, thank you for your support. Step-by-step, we are reaching people; we will not rest until we Reach the Day when we have cured this disease in children.
It has been a magnificent September for CureSearch, and for all who want to end this disease. But while September may be over, childhood cancer is not. Every month represents another opportunity to move forward and spread the word. I thank you for all you are doing on the behalf of children with cancer. I urge you to continue to do all you can to help; our children deserve nothing less.

As you can see, we are making a difference! Please continue to spread the word about the reality of childhood cancer, and the desperate need these kids are in. Thank you!!!

Erin

PS - Does anyone know how to get a very sleepy 18 month old to take a nap?

Sept 24, 2007 - Dinner and cancer

Here is an easy way to help fight childhood cancer. All day today, Chili's resturants nationwide are donating 100% of thier profits to St. Jude's Hospital. If you are thinking of going out for food or just don't want to cook or you simply want to support the fight against childhood cancer, please consider eating at Chili's today!

Jason

http://www.stjude.org/corporate/0,2516,410_2034_23696,00.html

September 16, 2007 - raising awareness

Keira continues to do well. Her biggest concern seems to be how many bananas we will let her eat in a given day. We will return on the 26th for more labwork and then next month we will have another CT scan. The focus of today's post isn't Keira, it is others like her who are battling this disease.

September is pediatric cancer awareness month. I haven't written a post about this until now because quite honestly I feel overwhelmed by what I have learned in the past 6 months. I feel helpless to help not only Keira, but any of the precious children I have met and heard of since Keira's diagnosis. We are incredibly blessed that God is healing Keira in such an amazing way, but she is beating the odds. Here are some facts

- One in 330 children will develop cancer before the age of 20

- By the time they are diagnosed with cancer, approximately 20% of adults show evidence that the cancer has already spread to other places in the body outside of the original location of the tumor. In children, it is far worse. By time a child is disgnosed with cancer, over 80% of them will have this distant spread of the cancer.

- Pediatric cancer is the number one disease killer of children, killing more kids than Cystic Fibrosis, Muscular Dystrophy, Asthma, and AIDS combined

- Neuroblastoma accounts for 7-10% of chldhood cancers and well over 15% of deaths, yet receives only 5% of research dollars from a national pediatric cancer fundraising initiative

- Neuroblastoma has a less than 30% chance of survival when there is evidence of distant spread at the time of diagnosis.

- The National Cancer Institute's federal budget designates 12% for breast cancer, 7% for prostate cancer, and all 12 major groups of pediatric cancers combined receive less than 3% of the budget


I am not saying that Cystic Fibrosis and Breast Cancer don't deserve funding - THEY DO. However, I had no idea what the statistics on pediatric cancer were before Keira was diagnosed, nor did I realize how severly underfunded research was in this area. If you haven't, please take time to write your congressmen. Let them know that you are concerned that we are letting so many kids down.

There are organizations set up to specifically fundraise for Neuroblastoma. Many of you have already donated to Lunch for Life - Thank you. A campaign is currently going on called the Loneliest road campaign. 6 fathers are cycling across the US from San Francisco to Washington DC to raise funding and awareness for neuroblastoma. They are trying to fund a specific treatment. You can read about their campaign at http://www.loneliestroad.org/

Please share what you learn. Send an e-mail to a friend, write an editorial to the paper, tell your neighbor. Alone I am not sure I can really make any difference in the lives of these kids, but if we each do a little, I hope we can make a real difference.

Erin

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

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

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

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

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

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

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

July 27, 2007 - Scans scheduled

Keira will have her follow up CT on August 1, 2007. We are glad to have a date and hope that this scan will allow us to gain some direction for the next phase of her treatment. Our hope is that we will see that the tumor is shrinking and that she will be done with treatment and we will be allowed to watch her closely. The alternative is that she will need another surgery with at least a couple more rounds of chemo. Charli - another little girl with Neuroblastoma (you can follow her link on the right), is also getting her follow up scan on August 1st. Please be praying for both of these little girls that these scans will bring good news!

Thank you for walking with us through this. We value your prayers, e-mails, and kind messages.

Jason, Erin, and Keira Grace

July 26, 2007 - another wait

Just a brief update to let you know that despite rumors (generated by conversations with Keira's doctors) that the follow up scans could be as early as tomorrow, we are still waiting on a date. We hope that they will be scheduled for early next week, but we haven't received any promises.

We promise to keep you posted as we know more. Keira doesn't seem to be bothered by the wait, so we will continue to be patient!

Jason, Erin, and Keira Grace

July 22, 2007 - No more fevers!

Keira is doing great today. This is definitely not the little girl we took to the ER on Friday. Her fever lasted 24 hours almost exactly. She never had any other symptoms, just the fever and being fussy and tired. It took us most of the weekend to recover from two nights of lost sleep, but tonight we are looking no worse for the wear and Keira is looking great!

We hadn't realized how much hair Keira had really lost because it had been happening so slowly. No big chunks falling out that we would find in her bed, no clumps coming out in her hands... Nothing. We were going back through the photos that we took when she was first diagnosed and it hit us, she's pretty much bald now. Above you can see her before and after shots. Luckily she has plenty of hats to keep her little head from getting sunburned in the hot Texas sun!

We spoke with her oncologist on Friday since we were in the ER getting evaluated. He gave us an update on the plan. He said that as long as she isn't sick, we could get her follow up scan as early as Friday (July 27th). That sounds great to us. The waiting time is difficult, so the less time we have left, the more we like it! We will let you know more as we do. Thank you for your continued prayers and support!

Jason, Erin and Keira Grace

July 20th, 2007 - Our first real fever

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.

She was given antibiotics and they are testing her blood and urine. They sent us home about 8:00 am. Throughout today she continued to spike fevers, getting as high as 102.5. We were able to use Tylenol to help control the fevers and try to make things a little easier on her. She spent most of the day snuggled up on my chest dozing (and acting as my own personal heater). She would stay there for an hour or so and then get up and play for 1o-15 minutes before wanting to just lay down again.

Overall, she seems to be doing ok. She is uncomfortable, but handling it all well. We ask for your prayers for all three of us, that Keira will be able to sleep and will get well so that we do not have to hospitolize her, that Erin and I will be able to comfort her, make good decisions, and get some sleep ourselves so that we can take of her.We pray she will be able to sleep tonight.

We will let you know more as we learn more. Thank you all,

Jason, Erin and Keira

July 17, 2007 - The Phone Call

One of the interesting things about climbing up a mountain is how each time you think you have reached the peak, you arrive at the top only to find another peak waiting for you (sometimes laughing at you I think). That is where we are right now. With every step we take on this journey, we keep thinking we have finally reached the top. In this case, we agonized over surgery, but we made the choice, Keira went in for the operation, and everything went very well. However, we wanted this to be the end. We truly hoped this would be the end. When they were only able to get a biopsy, we hoped that the tissue sample would show that the tumor was dead. We reached a peak and simply wanted more than anything for Keira to be done, to be healed, to be finished, to not have to go to anymore doctors, not have to get poked or stuck anymore, not have to have anymore more surgery, and maybe more than anything, we just wanted an answer. Though it has only been a few months, it seems like an eternity.

Well, we got the results finally, and there is another peak. It is not over as we so wanted it to be. The doctor told us that the results were a mixed bag. Some of the tumer is dead, and some is not. How is that for not having an answer? At the top of this peak, there is another one we have to climb. So, with our eyes locked firmly on that next peak, we are putting one foot in front of the other and marching our way on.

Here is what is happening: We are going to wait. We are going to do nothing. No chemo. No surgery. The doctors unanimously feel that the next best step is to wait. They believe there is a good chance that the tumor will shrink on its own. Instead of subjecting Keira to more chemo or more surgery when there is a chance that neither one will be necessary, they have decided to wait it out and see if the tumor will continue to shrink on its own. At the end of the month or the beginning of the next, we will rescan her. If the tumor has shrunk (please God) we will continue to monitor her, and she will not have to go through more chemo or surgery right now. If the tumor has grown, we will march right back into the fight guns blaring!

So we wait and believe and hope and trust.

Trust is a hard thing. Nothing is more precious to us than our daughter and yet there is nothing we can do for her, but leave her in the hands of the doctors and more importantly in the hands of God. But it is still hard. To trust God with the small things seems so much easier. To trust God with our daughter is a true test. But we must trust Him. He is our hope. He is her hope. He is our strength and our redeemer and the rock on which we stand. Amen.

Jason, Erin & Keira Grace

July 14, 2007 - Waiting Again, but what you can do to pass the time

Just wanted to put up a brief post to let you know that as of 7pm Friday night, the biopsy results were still pending. We hope that we will get them on Monday, but we have not had any guarantees.

We also wanted to say Thank You. When we got home from the hospital after Keira's surgery there were two pages of e-mails from all of you letting us know you are praying for us and for Keira. We were so encouraged by them and continue to gain great strength from you all.

You will notice a couple of new links to the right. The first is for Team Connor. You may have been to visit Connor's website already. This brave young man and his family have been battling Neuroblastoma for over 2 years now. They have learned many things in the process, which includes the fact that research for the treatment of neuroblastoma is severly underfunded. They are planning some great fundraisers including a relay and a raffle, to benefit the Children's Neuroblastoma Cancer Foundation (CNCF). Please check it out. Also is a link to igive.com. If you do any shopping online there are multiple businesses that will donate a percentage of your purchases to the charity of your choice, and you can designate CNCF as your charity. This is very easy to sign up for. As we hear of new ways to help, we will let you know. In the meantime, if you haven't written your congressmen about the Conquer Childhood Cancer Act of 2007 yet, please do so and ask others to do the same.

Jason, Erin, and Keira Grace

July 12, 2007 - We're Home!

It is hard to believe, but 48 hours ago, Keira went in for surgery. We are already home and have been for a whole day. Can I just say what a stud my daughter is! Nothing keeps this little girl down. And we can say that literally because she is walking all over the house and even carrying things with her. She is laughing and playing and eating well. We feel so blessed and so happy.

Thank you for all your prayers. Keira has done amazingly well, and I truly believe that it is because she has so many praying for her.

So, here is the story so far . . .

It began Monday night (7/9). We knew Keira would not get to eat the next day and would not go into surgery until around noon. So, we had to keep her occupied and not let her realize how hungry she was. To help this out, we tried to feed her extra Monday evening so she would have some reserve left the next day. However, despite offering her favorite foods AND waking her around midnight to feed her again, she only ate as much as she normally does. Tuesday morning we even tried to give her juice and gatorade just to get a few calories in her before she had to fast from even cleads liquids, but all Keira wanted was water.

We arrived at the hospital at 10:00. At 11:15 we were finally seen by a nurse practitioner who was doing her pre-operative evaluation. We expressed concerns that things were taking so long and Keira needed to get to surgery. It turns out that the place we were at had no idea that she was going for surgery that day at 12:00 (how does pre-surgery not know Keira is getting surgery?). So they hurried through her evaluation to try to get her to surgery on time. After a series of frustrating events we finally got to the surgical holding area around 12:15 (a closet sized room with a broken DVD player).

At 1:15 they came to tell us that Keira's surgery had been delayed (really? Wow, what a surprise!) for 2 hours. We thought, ok, no big deal. It's 1:15 so she'll go for surgery at 2. However, they explained to us that this was not a 2 hour delay from her original time, but a 2 hour delay from now. Yes, her surgery got moved back 3 hours. But no one told us this until an hour had passed, which meant we were in the 2 hour window before surgery and so we could not give her any clear liquids. Thankfully, Erin's parents and brother and some friends of ours helped us entertain our starving child for part of those 2 hours. Here is the amazing thing - she didn't complain once about not eating that whole time! She did great. She did not even go into surgery until 4:00 and still did not complain about being hungry.

When she did go into surgery, someone called us to come meet with the surgeon only 45 minutes later. It kind of freaked us out. They told us it would take at least an hour. To our relief nothing bad had happened. Now, the results are not everything we would have liked, but Keira was not hurt and they did not have to open her up. The surgeon explained that given the location of the tumor, all he could do without causing nerve damage was a biopsy. He was able to do it with a camera and 2 little holes in her chest.

We spent the night on the oncology floor, and it was pretty clear that Keira was hurting. She was very restless and couldn't sleep for more than 10 minutes at a time (it was a long night). They kept giving her pain medicine, but it really didn't seem to help much. About 4am she finally fell asleep. The next morning she was a completely different girl. When her doctor came to see her, she stood up in the crib and smiled at him to say hello. She did great all day yesterday and only took Tylenol for pain (I'm telling you she is a stud!). Amazingly, she was doing well enough that they let us come home late yesterday and today it is as if she never went through surgery.

So what does all this mean? Keira still has a mass in her chest. Over the next few days, the biopsy results will be back. It is possible that there will be active Neuroblastoma cells in the biopsy in which case she will need more chemo or we will go back to surgery accepting that nerve damage will occur. It is also possible that the biopsy will show scar tissue and mature benign cells. This might allow us to watch her closely and look for any signs of change in the mass. We won't know what the plan is until after the biopsy results are back. We will keep you posted as we know more.

Thank you

Jason, Erin and our amazingly strong and blessed little Keira Grace

Tough LIttle Girl

Keira had surgery yesterday. They only had to scope her. They were not able to remove the whole tumor as it is attached to a nerve. They did take a biopsy, and we will know more how to progress once we receive the results of the biopsy. She (and her parents) had a long night, but she is feeling much better this morning. It looks like this will not be a long hospital stay. Thank you for your continued prayers. More later.

July 9, 2007 - The Answer

Finally the test results came today. They were as everyone expected - HOORAY! This result gives Keira the most favorable prognosis, and for this we are truly grateful. 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. This would be the best possible outcome from tomorrow.

Because of her surgery, Keira isn't allowed to eat after midnight, and will have to stop drinking after 9:30. We are to arrive at the hospital at 10:00 and surgery will be after that (starting at 11:30 or 1:30 depending on who you ask) We hope surgery won't be delayed too long, because Keira won't be able to eat or drink until after the surgery is over.

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. Please continue to pray with us for Keira, that she will come through surgery without complications, and that tomorrow will bring her better results than we had hoped for... and one step closer to being cancer free.

Thank you,
Jason, Erin and Keira Grace

July 7, 2007 - Still Waiting

Yesterday we were anxious all day. We had been told the test would be finished Friday morning, so we knew that we could get a phone call at any minute telling us the results. After a long, nervewracking day we got a phone call at about 5:30 saying the test was still running. We are dissapointed. We now have to wait until Monday to know the results, but more importantly, we can't do anything this weekend. If the results came back unfavorably, we were to start chemo this weekend. Now we won't be able to do anything - favorable or unfavorable results - until Tuesday. We are understandably frustrated by all this, and know that Keira is doing well now and has responded well so far, but are still nervous that this delay may cause her harm. Please continue praying for guidance, wisdom, and protection.

Thank you,
Jason, Erin and Keira Grace

July 3, 2007 - A change in plans

This morning we met with the surgeon and decided to go ahead with surgery on Thursday. It was not an easy decision, but we both felt comfortable with it and were glad that the decision was finally made.

However, at 5:00 pm we got a call from the oncologist telling us that the surgery had been postponed until Tuesday. Here is the brief explanation: there is a test they can run to determine whether or not the tumor has favorable biology. They believe it does and the decision to do surgery is based on that belief. However, there is a possibility that it is not. This test will tell us for sure. We will know the results on Friday.

What does this mean? If the test comes back like they believe it will, Keira will have surgery on Tuesday and likely will be done for now (praise God). No more chemo, no more surgery. If the test comes back showing that the tumor has an unfavorable biology, which they do not expect, but it may happen, Keira will have to do 4 more rounds of chemo and then go through a more aggressive surgery.

Here is how you can pray: pray for good test results; pray that when the surgeon looks at the tumor through a scope on Tuesday that he will be able to resect it without opening her up; and pray that he will be able to get it all without damaging the nerves. If all of that happens, it is only by the grace of God because those last things are very, very unlikely.

Thank you all and we will keep you updated

Jason, Erin and Keira Grace

July 2, 2007 - We ask again for your prayers

The MRI showed that the tumor in Keira's chest is now a lot smaller than it was before chemo, but it is still there. This is wonderful news; however, it's not over yet. We have been talking with her doctors, who have been talking with other doctors about the next step, and the consensus is that surgery is needed. Here is our understanding:

1. For some reason, neuroblastoma tends to respond to chemo to a certain point and then quits responding. For this reason 4 more rounds of chemo might continue to shrink the tumor, but it will probably not make it go away completely.

2. Looking at the response Keira has already had to chemo, (i.e. the fact that in four rounds the cancer is gone completely from her bones and has shrunk considerably in her chest) her doctors believe that if the chemo could completely eradicate the tumor, it would have done it during these four rounds. The fact that some remains suggests to them that chemo will not completely wipe this thing out.


Because of these two reasons, our doctors are recommending surgery as the next step. We will be meeting with the surgeon and Keira's oncologists tomorrow morning (Tuesday 7/3) to discuss what the surgery will entail. Here is what we know right now: there are some significant risks with this surgery, and we are nervous. While chemo has risks, Keira handled it pretty well, and we already know what side effects it has, but surgery feels like this big unknown.

There are so many questions. How long will she be in the hospital? How much pain will she be in? Will she have permanant nerve damage? Will they be able to get the whole thing safely, or will they have to leave some in? Will we have to do more chemo anyway?

We have not committed to surgery and really won't be able to do that until after we have spoken with the surgeon and have a better understanding of what the surgery will be like for her. There is a real possibility of life-long side affects associated with the surgery. The whole thing is scary.

The surgery is scheduled for Thursday, July 5th. This is very fast, and we are grateful that we won't have to wait and give the tumor time to grow before she goes to surgery, but it also means we have little time to make this decision.

We are grateful that Keira has had such a wonderful response and is now at the point where surgery is an option for her. To look at her, you would never know that she was sick and had gone through chemo so recently. She is a testament to us of God's grace and goodness, that He has protected her to this point. Ultimately, we have to trust Him to protect her through the next step, and the step after that.... surgery, chemo, and whatever else she may need.

Thank you for your prayers, e-mails, and cards. We love knowing that she has an army praying for her and thinking about all three of us. We are so grateful for all your support.

Jason, Erin and Keira Grace

June 28, 2007 - MRI

Sorry this has been so long in coming. I know many of you are eagerly awaiting the results of the MRI. The really good news is her tumor has shrunk significantly. Now all that remains is a 1.5x3.5cm mass in her chest. This is a big improvement from before. We are so grateful for this wonderful response. We are currently at a point where we need to make a decision. Do we do 4 more rounds of chemo or do we proceed with surgery? We ask for your prayers about this. We want to do what is best for Keira and the surgery is not without risks, but 4 more rounds of chemo has its risks also. Please be praying for wisdom for us and for her doctors that we make the right decision.

Thank you,
Jason, Erin and Keira Grace

June 23, 2007 - Celebration Saturday

We decided to celebrate today in honor of Keira's progress. This morning we went to the Dallas Arboretum to see the flowers. Keira loved them and had a blast! You can see a picture to the right. Then, after her nap, we went swimming. Keira has such a wonderful time just splashing in the pool and floating around - not a bad thing in the Texas heat. Then after dinner we went and had a banana split. Keira loves bananas. They are the only food she asks for by name - well almost. She replaces the initial B with an N, but keeps the vowel sounds the same - Nuh-na-nuh. When the sundae was set before her, she was so excited. All in all it was a great day.

You may notice there are a few extra links on Keira's blog today. These are some of the sites of other children we have met who are battling neuroblastoma. We will be requesting your prayers for them throughout their treatment and this way you can "meet them".

As you can see, Keira isn't alone in her battle. While she is doing well, her fight is not over. Others have been battling much longer and still don't see an end to their fight. I am going to ask again for you to help these kids. Cure Search - an organization dedicated to finding cures for pediatric cancer - is having an event in Washington DC on June 25th, and 26th. Please join me in sending a message to Washington that we want better solutions for these kids! If you haven't sent a letter to your Congressmen about the Conquer Childhood Cancer Act of 2007, please do. Now is the perfect time. Tell others about these kids. It is easy. When you follow the link to the right and write your letter, Cure Search will allow you to send the link to six friends via e-mail. We can make a difference. Please help!

Thank you for all your support through this. We cannot do this alone, and have not ever been alone. We are truly grateful.

Jason, Erin, and Keira Grace

June 22, 2007 - The Outcome

On March 9th I wrote possibly the most difficult thing I had ever written and that became our first post. It told everyone that little Keira Grace had cancer. The shock of it took our family weeks to come to grips with (not that we have really fully comes to grips with it even now). That began a battle that seemed to have very few high points. Though we held on to our faith and leaned on those who love us, we still had so many times where all of life seemed to be spiraling completely out of control with no signs of stopping. Every morning for the last few months we woke up and got out of bed only by the grace of God.

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.

Everyone, she is getting better. Praise God from whom all blessings come! Our little girl is beating this thing!

Now, it is not over. She is not out of harm's way. This battle will continue, but for the first time, we feel some hope like we have not felt since this all began.

There is one more scan that must be done. The MIBG is not a clear enough scan to determine what the chest really looks like. On Wed, she will get an MRI which is much clearer than the MIBG. The surgeon will then look at this and determine whether or not he can do surgery.

So, what we know is that Keira Grace is getting better. But there is more to do. Today we are celebrating, but the fight is not over. We still do not even know the next step, but thankfully in a few days we will. We know that in the long run even if she beats this completely, it will never really be over. There will always be the chance it can come back. We will live the rest of our lives with that shadow hanging over us. But as I think of the future and I think of our faithful God and what He has brought us through so far, I cannot help but feel these words deep in my soul

Psalm 23 "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

We find comfort in our God and our family and our friends. And today we rejoice!!!! Keira Grace is winning.

Thank you all,


Jason, Erin & Keira Grace

June 21, 2007 - the long day

Keira had her MIBG scan today. Overall things ran smoothly. She woke up this morning and had a small breakfast, despite Dad's coaxings and then played for a while before taking an early nap. We were worried that she would throw a fit around noon because she wanted food, but you all must have been praying for her. Despite the fact that she didn't go under anesthesia until 3:15 (almost 7 hours with nothing to eat or drink) she didn't make a peep!

The test went smoothly. They did another bone marrow biopsy after it was over and then let her wake up. We got home around 8:15 and both mom and dad were exhausted. All in all, things went off without a hitch. We will go back tomorrow to get some results.

Please be praying for Keira's doctors that they will interpret the scans acurately and make the best decisions for her care based off these tests. Also please be praying for Charli. She is another little girl (10 months old) who has Neuroblastoma and is at the same stage in treatment that Keira is. Her parents are going tomorrow to meet with their doctor and decide on the next step (surgery, more chemo, etc) Please pray for strength and wisdom for her parents as this will be a difficult decision to make.

We will post again as soon as we know more. Thank you for your prayers and support!

Jason, Erin and Keira Grace

June 19, 2007 - an update

Not much new to share in the cancer realm today. Keira will go in tomorrow to be injected with a radioactive medication that will be taken up by any remaining active tumor cells. In order for the tumor to have time to take the medicine up, she will go back on Thursday to be imaged. She has to undergo general anesthesia for this since she has to be perfectly still for 2-3 hours. While she is under anesthesia, they hope to be able to do another set of bone marrow biopsies. They will take samples from both of her hips and examine them for tumor cells. We will then go back Friday to have labwork done and find out preliminary results on the scan she had Thursday (MIBG scan) and part of the bone marrow biopsy. All this to say, we will likely not know much until Friday.

After that, we will return the following Wednesday ( 6/27/07) for an MRI. This is to be able to get a more clear picture of what the tumor in her chest looks like compared to what it did before. The MIBG scan is very fuzzy and looks like a bunch of dots, where an MRI looks more like a photograph. The MRI will be what they will use to decide if surgery is an option at this time. We are obviously praying that all the cancer will be gone, and we won't have to undergo any further treatment, but if that is not the case, it is likely that we won't know what the next step will be until late next week, or even the first week in July. The waiting remains very difficult.

On an up note, Keira has had a wonderful week. Saturday night she surprised us all by walking - not just a step - but across the entire room. We got all excited and she continued to walk around the rest of the night like it was no big deal. Well, evidently it was a one night only show. She is back to needing a hand to hold and will take a single step on her own before converting her mode of travel to a crawl. Honestly this is ok with us. With chemo and her platelets becoming low, if she wants to wait to walk until she is at little risk of falling, that's not such a bad thing!

We will enter a new post as soon as we have something to report. Thank you for your continued prayers, e-mails and cards. You cannot know how much they mean to us.

Jason, Erin, and Keira Grace

June 13, 2007 - the tests are finally coming

It has been a while. As I typed in the date, I realized the previous post was almost two weeks ago. I apologize. This last week was crazy.

It feels a little like we are starting over. Her last round of chemo happened 2 weeks ago. Her first scan is not until next week. Three whole weeks of doing nothing but waiting!

During the 4 rounds of chemo, we felt like we were doing something to help Keira. Now we feel like we are just waiting . . . waiting for these tests, waiting for results, waiting and not doing anything. And while we trust God, we are also scared. The tests will show 1 of 3 things: she has gotten better; nothing has changed; or she has gotten worse. The last option is very unlikely, and the doctors believe she will show improvement. But we are her parents and we are still scared. I think during the rounds of chemo we did not have to think much about what was really happening. Everything became routine and simpler. Now we have to break out of all that and finally discover if our little girl is really getting better. That is scary.

Her first test will be next Wed at 2:30 pm. Please pray for her. She is unable to eat anything for 6 hours before the test, which in the past has been more like 8 hours because the test always gets started late. It is not easy to "explain" to a 1 year-old why she can't eat. Her response is typically just a loud scream and then another loud scream and this continues until she is fed. So please pray for her and for her parents. And of course, please continue to pray for her as we finally learn the results of the past 2 months of chemo.

We will then meet with her doctors on Friday to discuss the results of the test. The ideal result is a miracle where all the cancer is gone and we fall to our knees praising God. The results doctors are expecting is that the tumor would have shrunken allowing either surgery followed by more chemo or another 4 rounds of chemo.

Also, her counts are low right now. She got her finger pricked to draw blood yesterday and we had a hard time getting the bleeding to stop because her blood is so thin right now. She is in danger of infection and showing signs of being extra tired. She needs your prayers. (I am so tired of all this.)

We are believers in Jesus Christ. Our faith teaches us that this universe, all the bad and the good, are still under the control of God. We believe that God loves us and loves our daughter. And we trust God. We pray that He heals Keira. But we are also parents of a sick little girl. Our home is tense right now despite our trust. We are anxious even as we believe. We are nervous even as we are hopeful. And in this silence, in the waiting, in the day to day moments where we have no answers, all we can do is lean on friends and family and most importantly on our Father in heaven. And from Him and from all those who stand with us we draw strength to see this through.

Jason, Erin and Keira Grace

June 1, 2007- Good news and bad news

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. We had our last day of Round 4 so now we wait for a couple of weeks, run some more tests, and see what kind of progress we have made. We are hopeful, but we are still nervous.

This morning we met a very cute little boy in clinic. His blue eyes looked just like Keira's. He looked like a perfect 12 month old. As we spoke with his family, they told us that he had been sick recently and his pediatrician had drawn bloodwork which had shown all his counts to be low. They were there today to get labs redrawn and were planning to do a bone marrow biopsy if his counts had not improved. As we talked with them, I remembered the day we did Keira's first CT. The wait for the results, the fear, but the feeling that surely our child was ok. We were wrong. The good news is, this little boy got to go home with a clean bill of health. We rejoiced with his family and felt relief with the news.

When we returned home today, that relief quickly left when we received an e-mail from the parent of a child newly diagnosed with neuroblastoma. Cancer takes families and turns their lives upside down. Before we entered this world, we had no idea what the reality of pediatric cancer was. We didn't know that cancer kills more children than any other disease. In fact, to get some perspective, each year cancer kills more children between 1 and 20 years of age than asthma, diabetes, cystic fibrosis, and AIDS, combined. The treatments that we currently have for cancer aren't good enough. They don't work enough of the time and they have terrible side effects. Keira is very fortunate. We spoke with a mother today whose little girl (20 months old) has had to have nutrition through her veins for 5 months because she can't eat enough to maintain her weight. Some of the other side effects include loss of hearing, impaired memory, liver disease, and heart disease.

The Conquer Childhood Cancer Act of 2007 was introduced in March. This bill will amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. We have written our legislators asking them to support this bill. Follow this link: Conquer Childhood Cancer Act of 2007 . It will take you to a page where you can quickly and easily also write a letter. Please take a couple of minutes and let your voice speak for our children. There are many of them, but they are too young to speak for themselves. We need to fight for them.

Thank you

Jason, Erin and Keira Grace

May 31, 2007 - Round 4 continues

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

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

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

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

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

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

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

April 30th, 2007

Keira is really doing well right now. She had a very good day today. She smiled and laughed a lot and her appetite is up. The only bad part about today is that I did not get to touch my little girl all day long. IT WAS HORRIBLE! I got really sick last night and in order to protect Keira, I had to stay away from her all day. So, there she was being all cute and playful and loving and I could only watch : ( (Why does she have to be so adorable?) All I wanted to do all day is pick her up and cuddle her.

Our next chemo round is scheduled for a week from this Wednesday. The first day will be very long and probably a rough day, but the next two days will be shorter and hopefully that will make them a little easier. I will give you more details as we get closer.

A final thing: Erin's work has been very thoughtful and generous in setting up a trust for Keira. In addition to the medical expenses, our income has dropped some due to Erin going part time and taking time off to be with Keira and so they thought it would be helpful to us. A number of people have asked us either how they might help us or if they could give money to us. This trust is now available to anyone who would like to contribute to Keira in this way. Here is the information on donating:

Please make checks out to: The Keira Grace Bowman Trust

Send those checks either to:

1. Jason and Erin Bowman
4124 West Creek Ct
Dallas, TX 75287

2. Baylor Univeristy Medical Center
c/o Judy Knight - Department of Radiology
3500 Gaston Avenue
Dallas, TX 75246

They will then be deposited into a bank account opened at the Bank of Texas for this trust

Thank you all everyday for your prayers, thoughts and support,

Jason, Erin & Keira

April 26th, 2007

Erin has returned to work. This is her second day. It has not been easy. My wife is one of the hardest working people I know, but she does not want to be away from her baby right now.

Keira is continuing to do better. Each day she seems a little more like herself. We pray that she continues to have the strength to beat this thing. She is laughing again and becoming even more curious than she was before.

This morning on my way to work I watched a few dads walk their little girls across the street to elementary school. For some reason this morning the scene really touched me. Sitting there at the crosswalk waiting for them to get cross the street, I suddenly thought I might cry as I thought about Keira. Someday, I will hold Keira's hand and walk her across the street and hug her and kiss her and watch her bound off to class. I have to believe that because I do not have the strength to believe anything else.

Keira really is doing better. Please continue to pray for her. Pray that the chemo is doing its job. And please pray for my wife. It is very hard for her to be away from Keira right now. Thank you again for everything,

Jason, Erin & Keira

April 24, 2007 - Alerts to new postings

During this time we are not posting as often as we once did and we cannot expect people to continue checking the blog on a daily basis. At the same time, we would like everyone to be able to stay up to date on what is happening with Keira and be aware of the times when our family is struggling and could really use some encouragement. So, we found a way to alert you when a new blog is posted. All you have to do is the following:

Send an email to jason-erin@sbcglobal.net. In the email, just type out your email address so that we can copy and paste it.

Then each time we publish a new blog, an email will be sent to you telling you that a new post has been published.

Thank you all for being there with us through this,

Jason, Erin & Keira

April 23rd, 2007 - the return of the Keira

She is not yet herself, but this afternoon, the pre-chemo Keira showed her face. We saw a glimmer of the careful, laughing and overly curious little girl that crawled through our house before this mess began. 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.

We are so thrilled to say that Keira really had a few good hours today. Little by little she seems to be winning this battle. We only pray that she continues to overcome and that she might be out of the worst of the side effects for now.

We continue to ask for your prayers and we continue to believe that God hears His people when they pray. Thank you so much,

Jason, Erin & Keira

April 21, 2007 - Prayer

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.

Jason, Erin & Keira

April 21st, 2007

Yesterday Keira had her 2 round of chemo. We got to the hospital at 9:00 am and Keira had 7 hours of chemo. She did very well until the last hour or so, when she got a little irritated with everyone. Poor girl, trapped in a hospital all day with no good place to nap. She came home and went to bed before 7:00 pm and slept until almost 6:30 the next morning. Outside of throwing up this morning, she has been herself most of the day. We are praying that she continues to be herself and feel good. Please continue to pray for her, especially that there will be no side effects from this round of chemo and that it will do its job and destroy this cancer.

She has also learned a new "trick" (not sure it is really a trick, but I am not sure what to call it). When we say, "I love you." She puts her hand to her mouth and makes a kissing sound. It just breaks your heart it is so adorable.

Thank you to the people who have donated to Lunch for Life.

Thank you to everyone for your continued prayers and emails. We always appreciate people keeping in contact with us. Have a blessed day

Jason, Erin & Keira

April 17th, 2007 - Birthday Pictures

We recently celebrated Keira's first birthday. As probably all parents have found, it is amazing how quickly time seems to go by with children. I know that is has been a year, but it sure does not feel like it. I vividly remember her first summer. She and I would sit in her room in the early morning before she could even sit up on her own and I would hold little stuffed animals over her while she eagerly tried to use her little arms and hands to grab at them. Now, she babbles and crawls and pulls things out of the cupboards and laughs and plays and interacts . . . my little baby is a year old! And she has never been more fun : )

Erin and I sang happy birthday to her about 7:00 am the day of her birthday. At the end when you say, "and many more" it struck both of us as a very profound moment. That is our prayer, "many more" -- many more birthday's, many more smiles, many more laughs, many more moments of life to share with our sweet girl.

Please pray for two things. First, she has one more blood test tomorrow that will determine whether she can get her next round of chemo on Friday. Second, this Friday is hopefully her next round of chemo. It will be different than before so we do not know what the effects might be. Please ask God to protect her from the side effects and to use this round to beat up on that terrible cancer in her body.

Thank you to those who have given to lunch for life. If you go to the website and click on The Giving Tree link, then find Keira's name, you can see her little tree. Each time someone donates, another ornament is placed on the tree.

Go to www.keirabo.com to see pictures from Keira's first birthday.

Thank you all so much for hanging in there with us and praying for us

Jason, Erin & Keira

April 16th, 2007 - thank you

Thank you Mr. Hunnicutt's class for all the Ducks you sent to me for my birthday all the way from California!!!

April 15, 2007 - Please Help

Many of you have contacted us with the question “What can we do to help?” With few exceptions we have asked you to continue to pray with us, letting you know that we will be sure to ask when there is something more you can do. Today we have something for you to do. In talking with other families who have children with neuroblastoma, we were made aware of an organization called Lunch for Life. Their purpose is to raise money to fund neuroblastoma research. The concept is simple, they ask everyone to give up their lunch money for one day and donate it to help find a cure.

Lunch for Life says it this way: "The cost of one lunch, if enough people contribute, can win this war. It is such a small price to pay, but it can and will save precious little lives. Please donate your lunch money to the Children's Neuroblastoma Cancer Foundation and help us eradicate this disease. Give a little money. Spread the word. Save a lot of lives."

There are two ways that you can help

1. Log onto their website: http://www.lunchforlife.org and click on the link to donate. You can even donate in honor of Keira Grace.

2. Eat at Purple Cow in Plano, TX today through Wednesday (April 15-18) and they will donate a percentage of your meal to Lunch for Life.

We want more than anything to see Keira free from cancer, but we would also like to see the other children that we have met cured. Children should not have to suffer through this and neither should the familes who make this terrible journey with them. Here is a simple way to help.

April 13, 2007 - Good News (mostly)

We have two items of good news. I say "mostly" in the title because neither one changes Keira's condition, but we will take small victories as often as we can get them.

First, Keira's counts are back up! If this remains, it means she will get her next round of chemo on time and she is no longer at greater risk for sickness for the moment.

Secondly, Erin's work has been very generous with us. Thank you for praying. Erin will be starting back to work soon, but they have given her a lot more freedom during this period of time. Erin will be working less, so that Keira will always have one of us with her for this whole period of time (no babysitting), plus Erin does not have to work as many hours so she will get more time with Keira and her work told her that when she needs time off to be with Keira through chemo she can simply take those days off. We even get to keep our insurance! It is such a blessing!

Thank you all for your continued prayers and support. God bless you

Jason, Erin & Keira

April 13, 2007 - Laughing at ducks!

We have been sorting through ducks recently so that we can give some to Children's Hospital for other little kids and I found this picture and wanted to share.

April 11, 2007 - decisions

Not much has changed with Keira. Amazingly, she is handling the chemo and the cancer as if nothing were wrong at all. She seems to have a lot of energy still and her apetite has not decreased much.

For Erin and me, we have some hard decisions to make this week concerning the next 12 months. Tomorrow, Erin will talk with her work and based upon the outcome of that conversation, I will approach my work Friday. We are trying to make the best decision we can that will allow us to keep medical insurance, keep Erin from falling too far behind in her program, continue to reasonably provide for our family, and most importantly take care of Keira (without knowing whether she will need more chemo, surgery, or something else entirely -- this lack of knowledge is the most frustrating part and makes this whole decision very hard to make). Please pray for wisdom and guidance. We have dwelt upon this for the last 2 weeks and explored every possible option that we can fathom, but now it is time to finalize our plans as much as possible.

We are still getting emails letting us know that people are praying for us and we continue to appreciate those emails. This period is easier in some ways, but harder in others. It is good that Keira is not having to spend a lot of time in the hospital right now and appears to be doing so well. It is hard to just wait, not knowing whether the chemo is working or not. We must simply continue to trust God and believe that He will answer all the prayers that so many people are making on behalf of our little girl.

God bless you and thank you so much,

Jason, Erin & Keira

April 8, 2007

An interesting thought occured to me today as we celebrated Easter. This is Keira's second Easter, and she is not yet 1 year old. OK, so maybe it is not that interesting . . .

Keira hunted eggs today. They were placed in plain view and filled with strawberry puffs, but nevertheless, she did hunt them down, shake them and eventually break them open to eat the yummy puffs inside. She had a blast! She also got a new little outfit from some good friends. Watching her with the outfit, you would have thought it was a toy. She scratched at it, used it to play peek-a-boo, stretched it, tugged and chewed on part of it for probably 20 minutes. I have no idea how she will look in it, but she sure did enjoy playing with it.

The only change we are starting to notice in Keira is that she is a little more tired than normal and a little more fussy, but overall, I think she is still doing exceptionally well considering her condition and the toxic chemicals they pumped into her body. She is doing so well in fact that even though she cannot walk yet, she climbed up her red slide all by herself. It was very impressive for a girl afraid to stand up alone.

Please continue to seek the Lord on her behalf as we wait expectantly and eagerly for God to step in and work in her life even as He has already worked so much in Erin and me through this whole ordeal.

Happy Easter to all our friends, family, and everyone who is enduring with us in this fight. May God greatly bless you on this beautiful day in which we celebrate the glorious resurrection of our Lord Jesus Christ. Sin could not defeat Him; the grave could not Hold him; He is the Risen Lord; and if He so wills, this cancer stands no chance. Amen.

Jason, Erin & Keira.