People always ask what they can do for us. We do appreciate your prayers and service in our behalf. We'd also like to ask you to leave comments on the blog or directly in our email sometimes. Just a little note so that we know that you've been here and know what's going on. For Jon & I it is these little reassurances that we are not in this alone that mean the world.

Monday, August 11, 2008

Chemotherapy Treatment Plan


There is a nationwide protocol that children with Jacob's diagnosis receive. Our doctor is part of the Children's Oncology Group (COG) where they share information and treatment plans. If we lived by another reputable hospital, his treatment plan would be the same.

Jacob will be in treatment for about 9 months. Then there will be follow-ups with CT scans, ultrasound, or X-ray. This type of cancer does not have a special test to let you know "if you've got it" or not. There are no identified excretions in the blood (tumor markers) that you can watch to see if they are going up or down. We've taken out the tumor, so we aren't measuring something and watching it shrink. We are at chemical warfare with microscopic cells. It's a bit unsettling. Success in treatment is achieved by not having more tumors develop. Doctors say that this type of tumor ALWAYS comes back if left untreated. They do have a high success rate when they follow this regimen.

So this is what we will be doing:

Phase 1 - 12 Chemotherapy Treatments
Jacob will receive four cycles of treatment in Phase 1. Each cycle is about 3 weeks.
The round begins by giving him a combination of three drugs (this is what we did last Wednesday). He also takes Zofran for nausea and another medication to protect him from the side effects of drug #3. This treatment might best be done in the hospital because he needs to receive large amounts of IV fluids.
On week 2 of the cycle, we go to the clinic. They'll access his port and draw blood. After his blood counts are accessed, he will receive an injection (kind of like a booster) of just drug #1 from the triple combo.
On week 3 of the cycle, we'll do the same as we did for week 2.

While this is all going on, it is expected that his blood counts will drop -usually 7-10 days after chemo. This is when his immune system will be especially susceptible. If his counts aren't in an acceptable range, we take a week off of chemo for them to come up. We will be tracking Jacob's numbers to know his pattern.

Half Point Check
This is where he will have additional CT scans to make sure there are no signs of new tumors. If something comes up, we would be looking at radiation or surgery. We don't expect this to be the case. Our assumption is that the chemotherapy can kill off the stray cells before they have time to create another problem.

Phase 2 - 12 Chemotherapy Treatments
From our understanding at this point, these four cycles are much the same as phase 1 except that we drop drug #3 and proceed with a 2 drug combo.

SO what does this all mean. It means that I'll be sitting a full day at the doctor's clinic EVERY week. Only patients and a parent go to the clinic. So, I'll need somewhere for my other three kids to go. I'll need help getting them to and from school.

We will have times when we can't leave the house. We will have times when the common cold could mean a 2-3 week stay in the hospital. Then there's also plenty of room for surprises. Infections can come from other people, but most often come within the patient's own body. We might need blood transfusions if the counts get too low.

It's a lot to take in. There is no shortcut. You can't finish the course early. We are in for the long haul. The expectation is that he would be "cured" - meaning no recurrence of tumors.

5 comments:

Carolee said...

Reading this brings back so many emotions for me. It is so good that you are doing this, writing it all down. I just didn't have it in me to write during our "journey" but I wish I had. Right now I have been working on writing about our experience but it is so hard to remember everything after the fact, but what is most difficult is writing down all the blessings that came into our lives. Heavenly Father showered us with countless tender mercies and its hard to think of words that express my gratitude. Thank you for inviting me to view your blog.

Mindy said...

Jennifer,

I'm glad you are keeping such a great record of it all. It's fascinating to me to read the process, and faith building to hear how well you are taking it all in stride. Thank you for sharing your experience, and know that we are thinking about you! Love you!

The Mid Life Guru said...

Your new found expertise is fascinating. I appreciate the learning curve I am receiving from your knowledge. Jacob is in great care because he has parents and doctors who are guiding the best treatment. Count me in for school drive bys or a place where they can come after school.

jenni bishop said...

You are explaining everything so well but it is still so much to understand and remember! I can totally help with school pick-up/drop-off! Keep my cell phone number handy! Thank you for inviting me to view your blog.

Joanna said...

Jennifer, I don't know how you do it all, but you will be blessed for your efforts made for sweet Jacob and the rest of your family. Our prayers are with you!