An email I just sent my son Chandler:
Well, I think my day might have been almost as busy as yours. I'll give you the run down.
Ashtyn and I met with her doctors this morning. This is basically what they said to Ashtyn, "In all these years you have never qualified for a single clinical trial. Your leukemia cells do not have the characteristics and markers that typical leukemia cells have therefore it's completely rare. On November 11th 2017 a study was started that you qualify for using the drug Venetoclax and is being done in Seattle. Primary Children's Hospital will be conducting the same study but won't be starting for another month or two. We think you should go to Seattle, start the study drug, and once Salt Lake starts the trial, move back and continue the drug here. Now Ashtyn, this drug may never get you cancer free and might only buy you time but it's the treatment we feel best about. If the drug happens to get you cancer free then we will discuss, through the Bone Marrow Transplant team, what Bone Marrow procedure may work to keep you cancer free for good."
Ashtyn's response, "I am absolutely willing to do anything. I have more fight in me than I've ever had."
My response, "Since we are all on the same team, let's make sure we are all on the same page. Ashtyn has beat the odds before and there is no reason we should doubt she won't beat them again. Start thinking about what treatment is best when she gets cancer free and be ready to be amazed."
Miracles seen:
1. Her white blood cells, platelets, and red blood cells are currently kind of stable. The numbers are pretty much the same as before we went to Vegas which means the leukemia cells aren't taking over all the other cells at lightening speed giving us this time to get plans in order.
2. From day one, five years ago, doctors have always been concerned that Ashtyn didn't qualify for any clinical studies. What's the chances that no trial study has ever been available to Ashtyn until two months before her 3rd relapse?
3. How amazing it is that Primary Children's Hospital is conducting the study as well which means we don't have to be in Seattle as long.
4. Ashtyn currently has very few white blood cells but has not gotten sick at all. You even got sick a few days ago! She is currently healthier and stronger than the doctors would expect which is a great way to start.
1. Her white blood cells, platelets, and red blood cells are currently kind of stable. The numbers are pretty much the same as before we went to Vegas which means the leukemia cells aren't taking over all the other cells at lightening speed giving us this time to get plans in order.
2. From day one, five years ago, doctors have always been concerned that Ashtyn didn't qualify for any clinical studies. What's the chances that no trial study has ever been available to Ashtyn until two months before her 3rd relapse?
3. How amazing it is that Primary Children's Hospital is conducting the study as well which means we don't have to be in Seattle as long.
4. Ashtyn currently has very few white blood cells but has not gotten sick at all. You even got sick a few days ago! She is currently healthier and stronger than the doctors would expect which is a great way to start.
Ashtyn and I will go to Seattle on Monday or Tuesday and possibly be there a month or two. Most of her time will be out of the hospital so we will be sleeping in an apartment at the Ronald McDonald House.It looks like as you are heading for an adventure, so are we.
We really are feeling calm, peace, and almost excited to get done what God wants us to do.
We love you. You are always with us as we are always with you and are grateful for you every day.
Love, Mom
P.S. I'm thinking it would be a good idea if I email your mission President about what's happening in your family just so he is aware. I feel good about that decision.
This team will do our best to get rid of cancer for good.
Dr Luke Maise: Oncologist
Dr Michael Boyer: Bone Marrow Transplant physician
Ashtyn: Fighter
Mom: Avid Supporter
Showing the team videos of the not-so-real
Micheal Jackson singing in Vegas like he was.
Ashtyn wishes she could take Luke with her to
Seattle. He is not only her doctor but
her most trusted rock. The love is real.
Feeling the love from our BFF nurse Shannon and
our know-all and amazing nurse practitioner Hilary.
Ashtyn thinks the hardest part of being in Seattle
will be not having her hospital family there.
These women have been her nurses for 5 years.
There is no love stronger than the love we have for nurses.
Group Hug
You got this!
Dr Doug's her buddy.
