Sunday, March 18, 2012

We are still here!

Hello everyone,

I know it has been a really long time since I have posted anything so I thought I would try to start up again since so much has happened. It has been a little over a year since all of this started. When John was first diagnosed we were given a sheet of paper that had his treatment schedule for 54 weeks. Just a little over a year right? Well we are still not done. There are so many things that can delay treatment and I think we have experienced every one of them! Low red blood cells, low platelets, retinal bleeding, infections and now problems walking due to one of the medicines.

After my last post John had an attack of pneumonia which kept him in the hospital for 2 1/2 weeks in November. He was released right before Thanksgiving. We also had scans around the same time and the tumor in his head was at 13% of its original size. The doctors are unsure about the tumors in his lungs due to the scarring from radiation. On a scan the right lung is full of scar tissue that the scan can not go through so they can not determine if the tumors are completely gone or not.

He has also had a problem with his vision. It started when he was telling me that he was seeing spots and sometimes things were very blurry. During one of our many hospital stays they had an opthamologist come and look at his eyes to try to figure out what was going on. At that time they saw that he had retinal bleeding or hemorrhaging behind his eyes. The reason it was blurry was because they were full of blood. That was a side effect of low platelets. After that the doctors decided that it would be best if they kept his platelets above 30 so his eyes could start healing. They kept checking his progress and then changed his platelet level above 50 because his bleeding was severe. Along with that comes more transfusions and an increased risk of hemorraging in his head. We need to be very careful of him getting hit in his head , playing rough, wrestling with his brother and falling. Any of those things can cause bleeding in his head. Just to give you an idea of our treatment compared to others , the kids can have a platelet count of 20(20,000) before they do a transfusion so John needing to be above 50(50,000) means more transfusions than some kids get. Normal levels are above 140(140,000) and in order to get his chemo treatments he needs to be above 75(75,000) on treatment day. Now that we have been keeping his levels up his vision is improving and the blood is almost all gone. We will not know for a while if it has caused any long term damage.

I still have more so I will post again soon. I hope everyone is doing well.