Clinical trial - part 2

Tyler remains heavily medicated and mostly sleeping right now. At last count, I believe he was on 4 antibiotics, an immune booster, a chemo treatment, some other cancer treatment, an anti-fungal, round the clock pain meds, a bag of nutrition, a pain pump with methadone and blood transfusions. Phew! I guess anyone would be sleepy with all that going on. His IV pole is looking quite busy again...

I was there on Friday night when the nurse was getting ready to administer the next round of meds. Tyler woke up a bit and asked, "Oh, are we starting the medication today?". He hadn't even remembered that it started the night before and they ran a million tests on him during the night because of the increased heart rate and such. He had slept through most of it. So I guess that is a good thing. The less he has to worry about, the better!

Still no word from surgery on if he can have anything to drink yet...so if you have chosen to fast and pray with us, please continue to do so. Stay strong! I know it's tough!!

Some people have asked me for more details on the clinical trial. I don't have much more than what I said in the last post. I did read the medical journal entry about it and most of it I didn't understand (a lot of medical terminology), but followed the concept. The first page looked like a page right out of Tyler's history book because this other boy's case was so very similar - a 17 year old with the same type of teratoma tumor, growing rapidly and not responding to chemo treatments. They deemed him "incurable" as well.

The main difference is that the other boy was "healthier". Meaning, he was able to do the entire 18 months of treatment out-patient and with minimal side effects. It noted that he was still able to go to school. Tyler is much sicker, but his tumor is not growing as rapidly as the other boy. The ray of hope is that the other boy had favorable results. He was deemed "fatal" and "incurable", but after this treatment the tumor shrunk. Then he was able to go through "excessive surgical resection" to have the tumor removed. The article noted that he had been disease free for 2 years (article was published in 2009, but it wasn't 100% clear on when this trial occurred). 

The seriousness of this should still not be taken lightly. To get approval to do the treatment, this boy's doctors had to go to the board of ethics and it also noted they had to find a surgical team that was still willing to take a chance on doing the surgery after the treatment. In Tyler's case, they didn't have to go to that extreme to get approval to start the treatment, but they did require Tyler's signature, Michelle's signature and an additional witness. This is serious business and we are still continuing to pray for Tyler and a positive outcome from this treatment.

Thank you for your continued prayers and support. I don't think we can ever properly express our gratitude to you all for joining us on this journey. God Bless!