Thursday, June 23, 2011


Hey guys - just a quick note to let you know that today starting at 8:30 Caleb is having another round of blood tests to confirm the initial hormonal issues. He will have about five hours of blood tests conducted today so we would really appreciate your prayers. The test required fasting - something he is not a fan of - and it is just hard for a five year old to sit in a doctors office for five hours.

So - if you would pray that this would go well we would really appreciate it. We also continue to seek your prayers for healing for our son. The results of this test are significant because we will be making decisions based upon their findings. If these tests find the first test to be an anomaly that would be an amazing thing... which is not completely a foreign idea. We will post back once we know more - probably next week.

Thank you for your friendships.

Saturday, June 18, 2011

Friends in Eastern Europe

We are so excited to be sending our dear friends off to Eastern Europe to meet their son for the first time. Derek and Karen are making their first of two trips starting tomorrow morning. They are adopting a beautiful baby boy that has captured their heart in many ways and we are thrilled to be walking through this with them.

If you are interested in following their journey you can do so here. To make it easy , there is a box on the blog to enter your email address. I know they would welcome your prayers for safe travels and open doors.

Monday, June 13, 2011

Caleb Update

Dear Friends,

We met this past Thursday with a Geneticist at Vanderbilt to have Caleb reviewed for a genetic condition called Neurofibromatosis. If he has this condition it will be helpful in describing his tumor – for possible treatment. In review of Caleb, the doctor was unable to identify Caleb as having NF and went so far as to say he does not believe he has NF as it is commonly seen in children. We have a blood test that is scheduled to be back on Thursday that will hopefully add confirmation to this clinical review.

The Geneticist did however present us with a third possible option for our next steps. He was able to locate two studies conducted on children who had similar circumstances including the tumor. This option involves treating Caleb with a synthetic form of a hormone that our body uses to regulate the production of growth hormone. There have been some theories that an abundance of growth hormone may contribute to the growth of optic pathway tumors (what Caleb has) and that if properly regulated we may be able to stop the progression of growth.

Treating with this hormone may then buy us two wins – it could stop the growth of the tumor and it could help his body better regulate growth hormone.

This week is going to bring some more tests to confirm the findings we are dealing with and more conversations between doctors regarding this possible alternative. Please pray for wisdom in these conversations, that fear will be bridled by risk and that the correct next steps can be determined.

Wednesday, June 08, 2011

Today's Meetings

Today we had meetings with Neurology and Oncology. These meetings were hard discussions to have. We have confirmed that what we knew on Monday is pretty much the direction they are going to advise. There are some variables still in the mix with regard to the genetic testing that is being conducted, but regardless of the outcome of that test there are no "good" options on the horizon (Chemo or Biopsy are the two options).

We did discuss the possibility of another round of waiting and evaluation, but that too has risks and complications we may encounter - so truly there are no good choices.

What we need most right now are your prayers for wisdom, peace and healing. We know there is a plan in these events, and we earnestly want to trust and rest in this, but we also confess this is a very hard place to be situated.

We thank each of you for your prayers and words of encouragement today.

Austin & Nicole

Monday, June 06, 2011

Tumor Review Board

Dear Friends,

In our last post we shared with you that Caleb would be having a test conducted by his Endocrinology doctor to check for proper pituitary function. Caleb did an excellent job during this test and we thank you for your prayers. The test results came back, and they didn’t contain good news for us.

The specific test conducted was designed to measure Human Growth Hormone levels as they respond to the “things” in our body that are supposed to suppress their production. The markers for these things in his blood were outside of the appropriate range for his age. It was discussed by his Endocrinology doctor that a likely cause of these imbalances was the growth very near the pituitary gland.

The next step was today – today there was a tumor board review for Caleb’s case. In these reviews a series of doctors review the most recent information and make decisions with regard to the plan of action.

I tried several times today to reach the Ophthalmologist, the Neuro-Surgeon and the Endocrinologist but for a series of reasons (all perfectly good) we were not able to get in touch with them. I was able to talk with the Neuro-Surgeon’s nurse and she gave me a very quick summary which included strong suggestion that either a biopsy or chemo would be the next steps.

For over four years now we have not had any considerations such as this that were so near to actuality – so these thoughts and possibilities have taken an emotional toll on us today. I want to repeat that I have not actually spoken to any of the doctors yet, and that I will try to get in touch with them again tomorrow for sure. Right now we are scheduled to meet with the Neuro-Surgeon on Wednesday at 2:00 and on Thursday with Genetics. I am hopeful that we will get clarification after these visits.

We whole-heartedly request your prayers for wisdom in our conversations, with our words and with what happens next. We want what is best for our son – no question about it - but we are also scared of the choices we will have to make for him. We don’t know anything for sure because we have not talked to the doctors, but the news that we do know has been deeply troubling for us today.

Thank you for your thoughts and prayers.