Friday, July 27, 2007

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

Thursday, July 26, 2007

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

Sunday, July 22, 2007

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

Friday, July 20, 2007

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

Tuesday, July 17, 2007

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

Sunday, July 15, 2007

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 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

Thursday, July 12, 2007

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

Wednesday, July 11, 2007

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.

Monday, July 9, 2007

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

Saturday, July 7, 2007

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

Tuesday, July 3, 2007

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

Sunday, July 1, 2007

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

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