First Hospital Stay, Monday, February 2, 2009

It is Monday night, and we are in the hospital for what is to be the first of many stays in the coming months. I am unable to post to my blog, due to hospital filtering, so I figured I better at least write a quick note to update everyone.

At the doctor's office today, we got the results of the test on the bone core they removed from Simon on Thursday. It is official. Simon has Severe Aplastic Anemia. A normal bone in a child of Simon's size and age, there should be 50-70% marrow. Simon's bone only has 5%.

Tonight, we checked into the hospital, where they are preparing to give Simon some platelets in preparation for tomorrow's surgery. Simon will have a port put in under the skin on his chest. This will enable the doctors to have access to his blood without having to put in an IV every visit. It is also called a central line. Because his platelets are low, they need to boost those before surgery so he doesn't bleed. The procedure is normally an outpatient surgery, but Simon needs extra care because of the aplastic anemia. Even the platelets he will receive are extra treated to protect him. If all goes well, he will be able to go home tomorrow evening.

Next comes a few days of waiting to allow for heeling. On Friday, we will return to the clinic, where Simon will receive a special IV antibiotic. That will take approximately 1.5 hours, then home for the week-end.

His actual immune suppression therapy will begin one week from today. The ideal is for him to be treated as an outpatient at the clinic. The other option is 5-7 days in hospital. The doctor prefers the clinic, because Simon will be very vulnerable to infection and illness, and people who are in the hospital are sick. In the clinic, they have more control over who is allowed in. Wether he is inpatient or outpatient will be decided by the insurance.

As an outpatient, Simon will be at the clinic every morning at 9:30 and go home around 5:00. The goal of the treatments is to wipe out his t-cells, so that his body can grow healthy ones back. The first 2 weeks of treatment could be rough. Some kids have a reaction called serum syndrome. It causes painful and swollen joints. He will be given steroids to try to avoid that or at least minimize its effect. After the first 2 weeks, that usually goes away.

Sometime during the first month of treatment, the other 4 kids will have their blood tested to see if they are a match in the event of a bone marrow transplant. If Simon is improving with the immune therapy, that can be carried out for up to 6 months, but they usually only go 1-3 months. If there is little or no improvement, they will begin the process for the bone marrow transplant. The transplant would take place up in Denver.

The major concerns over the next few months will be bleeding and infection. Because of that, he will be very limited on contact with people. School will be out, as will any place with large numbers of people. He will be allowed visitors, as long as they are free from colds or any other illnesses. Also, small gatherings of people would be okay, as long as no one is sick. He will be able to attend church, and orchestra should be okay, since we are a small orchestra and kids who are sick don't attend.

Last night, Simon was scared, and this morning he had a panic attack, but it was short lived, and he has been in great spirits since then. He did great when they put his IV in tonight, and he is now sleeping.

Thank you all for your continued prayers and support. Simon is very encouraged by the fact that he has people all across the country praying for him.

I have so many thoughts that I need to get out of my head and onto the paper, but I am exhausted, so they will have to wait until tomorrow.