Today marks the start of our lifetime adventure of treating Tyler's CML. We have an appointment at 11:30. They will take more blood it's amazing that our bodies can give up so much blood, have another EKG, and then wait and wait while they work on getting us the medicine he will start. That may sound like a quick trip, but I'm estimating it will take at least 4 hours, maybe we can make bets on how long we will be there? We will bring things to entertain ourselves.
Big shout out to our babysitters who will be taking over now that my parents have left. It was nice having them here as we have had to go back twice already.
I had a grand plan this morning that I would get Sawyer up an hour earlier so he would take him morning nap at 8:00 instead of 9:00... it's 8:32 and he is most definitely NOT napping! He's in his bed, and is talking to his stuffed zebra. Probably telling it how dumb I am for thinking he would nap any sooner then 9. Oh well, I'll just have to wake him up early from his nap, that'll teach him to talk bad about me to his zebra.
It's been getting around and getting mixed up and we want everything to be very clear about what is happening, so let me explain.
Tyler is taking part in a study at the Huntsman center. It is NOT a trial, but a study. They are taking two of the medications that are commonly used to treat CML and comparing them against each other. One is the very first med that they developed the other is the most recent. I'll distinguish them with a G (being the older) and a P (being the newer). G is approved as a first line drug, meaning it is one they would give people first as treatment. P is approved as a second line, or G failure drug. Meaning if people don't react well enough to G (or a couple of other meds out there) they would switch them to P.
There are already people on P regularly. It has been through trials and other studies already, and for those of you that care, it is FDA approved.
The great things (and things that will ease anyone's mind) about this study are:
-both drugs are FDA approved
-both treat CML
-we will know which drug he is given
-we can drop out of the study at ANY time
-our doctor can pull us out of the study at ANY time
-The risks associated with the study are the same we would be facing either way because he would most likely end up on these drugs at some point
-the risk/side effects are NOT as scary as I would have thought, and are all manageable, and may not even happen.
-Tyler will receive extra treatment and monitoring at no cost to us
speaking of COST
-the meds are free as long as we are on the study
And the best part
-Tyler will be helping these doctors better the treatment for CML
We are ever so grateful for those who have participated in trials and studies (some which may have had way more risks) before us. Because of them, Tyler's CML can be treated and he can live a normal life. We really feel like this trial (the one of having cancer, not the one at huntsman :) ) has been given to us as a way to help serve and bless others. Tyler wanted me to share this study info with all of you. He feels like the more we share, the more people we can touch and help.
We feel very safe and comfortable doing this study. We have prayed and know that our Heavenly Father will put Tyler on the medication that is best for him. Please feel free to join us in these prayers this morning as we wait to see which drug he is put on, you're welcome to pray that Sawyer will nap too.
After today we will be going back to Huntsman pretty frequently over the next month (so if anyone feels like they need a Sawyer fix, just let us know!) for lots of follow ups! It will mostly include blood tests. Every 6 months Ty will get a bone marrow biopsy, which we will dread, but handle.
Life can get moving forward for us, just as it is all of you. We are optimistic and excited about our future.
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