Test Update

Hello friends,

From our last post you will recall that we had another round of blood tests to confirm previous findings of elevated growth hormone levels in Caleb. We heard back from our doctors this week that while the levels were slightly lower than previously recorded his levels were still elevated above normal.

They ran another test on two different hormones that check for the onset of puberty at a chemical level. They ran this test not because he shows signs of puberty, but because studies show that if this tumor is behaving like it is expected there could be indications of early onset of puberty. We were saddened to find out that we also have this problem to deal with in Caleb. The levels of these hormones in his body were also elevated.

After chatting with the doctors they are still uncertain about the prognosis for Caleb though – in most circumstances you will have some physical complications to deal with before you resort to treatment. In Caleb’s case we simply don’t have any physical complications. In one conversation I was told that “Caleb really is in a very small percentage of patients – he does not have the physical complications that are typically present.” As scary as this sounds, I really do believe this is not an accident – that there are reasons beyond our understanding that Caleb has been insulated from the impact of his situation.

Because Caleb does not have physical complications – only bio chemical – the professional community is torn with how to move forward with him. There are known risks in both of the treatment options (Hormone Therapy & Chemo) – and there are known complications that will occur. Here you have a child who does not presently have complications and both options for treatment will create problems in his physical body. This conservative attitude of reservation is one that really gives us peace as we move forward, and were thankful to hear their struggle with this.

The next steps for Caleb will be that he will have another MRI at the end of July and he will have more blood work done in August with the present understanding that absent big changes we will do that every two months. The thought of putting him through this is very hard for us, but given the alternative we think it is the wisest decision that could be made at the moment.

We continue to look for ways to help his body win this fight, and we continue to seek your prayers for the healing of our son. We are scheduled to have a time of prayer for Caleb this Sunday 7/3/11 from 11:45 – 12:15pm at Blackman Middle School – our church meets at this school (www.fbcrc.org). We will have child care provided, and anyone who can make it is welcome to come seek the Lord for the healing that we truly believe He can provide.

If you cannot make it on Sunday but would like to join us in this time of prayer from afar here is what we will be asking for prayers with.

• That Caleb’s body will make war on the tumor and that it will be taken from him. It is known that these events do happen, and it has even been experienced by our medical team. We are asking that however God has made it so that our bodies can attack these things that are not supposed to be there will be activated in Caleb, and we will see a miracle take place. That Caleb will come through this struggle unscathed, whole and healthy.
• That Caleb’s vision will remain healthy. A great risk of this tumor is the loss of his vision. If there is vision loss it is unknown if it could be restored through therapy such as chemo. We are praying that this will not happen to Caleb, that his body will be protected from this risk.
• That Caleb will remain emotionally & socially healthy as he continues to learn more about his condition. He presently knows very little about what is going on. As he learns more there is the great likelihood that he will fear it or that he will see himself as “different” than his friends.
• That Caleb will not experience physical signs of early puberty. This will be a game changer for what needs to happen with regard to treatment. His body needs to hold off the hormones that are presently elevated so that changes do not begin before they should.
• That Caleb will not have long term physical complications from the elevated growth hormone levels in his body. There is the risk of developing pretty severe complications from prolonged elevation of growth hormone – we are praying that his body would either suppress the growth hormone or that it will remain unaffected by its elevation.
• That we as parents will be compassionate and understanding with our son as he faces lots of doctors, feels fear, gets poked on and sits in cold waiting rooms. That we will show him the love of Christ and help him experience his emotions in healthy ways.
• That we will make wise choices for his future. At some point we may have to make hard choices about his treatment, and we are asking that God will provide us with the wisdom we need to make the choice that is best for his future.
• That we will be united as partners in this struggle for our son’s health. The stress of the situation can create tension in our relationship. We are praying that our children would experience a peaceful home that is full of love and grace even in the middle of the hard things of life.
• That God would bring glory to himself in this process. That He would show his power through our son. That we would daily chose to place our faith and confidence in Him. That we would place our hope in him and not in a miracle – even as we pray for a miracle to occur.

It really is a huge blessing to have friends who care for us and are walking through this with us. Thank you for your encouraging words, prayers and support - you have been a very real blessing to our family.