Thursday, June 28, 2007

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

Saturday, June 23, 2007

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

Friday, June 22, 2007

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

Thursday, June 21, 2007

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

Tuesday, June 19, 2007

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

Wednesday, June 13, 2007

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

Friday, June 1, 2007

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

About Me

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

3/9/2008 - Celebrating one year from diagnosis

Stylin at the Easter Egg Hunt!

2 years and I still love cake!

First trip to the zoo - a great reward after a long day at Childrens!

- and I even got to hold a bird!

I see how long it's taking mommy to get through - I'd better get started now!


First day of school with best friend Ellie

How am I going to stick this landing?

The Fam

Keira's first cake




Daddy & Me

Daddy & Me