Your Prayers and Support

I feel encouraged by your messages. Working full time with so much on my plate can make it overwhelming to receive texts and calls.

I would like to ask that if you have a message, please contact me in the blog reply instead of a text or call. I do read all of your blog messages.

Subscribe to receive updates. We post here before anywhere else.

JT

Are You Serious?

Today, I walked in for the third time for radiation treatment, only to be turned away and told to come back another time.

The first delay was because of the machine malfunction; this morning at 7am I was told the door to the radiation room was broken, which shuts everything off. I was told to come back at 6PM tonight.

After 30 minutes on the table tonight, waiting for treatment, the tech came in and said they “measured wrong” and I will need to come back again next week.

So, I am frustrated, angry, but still grateful that we have these resources at City of Hope.

The plan is to go back Monday to start treatment. Let’s hope we can finally get this party started.

We’ll keep you posted….

Still Waiting…

Hi Everyone,

We arrived at 7am at City of Hope for my first radiation treatment and was greeted by the technician, letting us know the machine is still down.

We will post once something happens.  They scheduled me for 6PM tonight.

How You Can Help JT

Amber (left) winner of her age group, and our hero Katie pictured on the right

We have a friend, Katie Quintas, who founded an amazing non-profit to help families while they are going through cancer. It’s called Here to Serve.

 

A couple of years ago one of our friends hosted a fundraiser run at the school where she teaches. The whole event was designed and organized by her students as part of their leadership development. JT was the official photographer. And I ran with my friends. JT has helped this non-profit in other ways, designing videos of patients’ success stories, or memorials to some of their lives.

 

Oh the irony. Or maybe not… last week I met with Katie from Here to Serve to set up a care community for our family.

We really appreciate you for continuing to pray and follow our cancer journey with JT.  Your support and prayers mean the world to us! We are on the cusp of the nitty gritty and we both work fulltime, and many of you have contacted me to help with meals or other needs. Even though this is very helpful, I am already loosing track of who is helping us when.

Practical Support

We are working with Here to Serve (www.heretoserve.org) to coordinate all of your help. Anyone who wants to help will be part of our family’s care community. So if you want to help, please register.

All our communication will be through the care community, including our blog. We will be sharing ways you can help…even from a distance. This will be the most effective way you can help us, stay in touch, and know what is going on as our family takes this journey with JT.  Everything will be in one place! (Thank you Katie!!)

Click here to go to Here to Serve. Then click on the JOIN button and fill out the registration form. The system will ask for your info and will ask who you want to help.  You can type in JT and he will pop up as John “JT” Taylorson. You will receive an email immediately confirming your registration was received.  Within 24 hours you will receive a second email with LOTSA and John ‘JT’ Taylorson’s name in the subject line giving you a link to JT’s Care Community! Use the link to set up your own personal login in and password to JT’s Care Community. This is where you can sign up to help.

Thank you again for your continued prayers, love and support!  When an update is posted you will be alerted along with any needs our family has.

Waiting for Radiation

Late last night I received a call from City of Hope letting me know that the radiation machine was in repair and that I will need to cancel my appointment for the radiation today.

Next Step

The plan is to begin my first treatment tomorrow at 7am, followed with (so far) three additional treatments. We will keep you posted.

I was really looking forward to start picking off the cockroaches (tumors) in my brain.  In the meantime, I wait and go about my business and celebrate another day of life and good living.

 

The Beginning of Our Story

Amber Here. Yesterday afternoon JT had another appointment. This time with a cancer specialist from UCLA who does cutting edge treatments. We came prepared with questions that we found from another cancer patient and the doctor graciously answered all of them. And we believe he was being frank with us. He said his goal is to cure the cancer; when we asked how many patients get cured, he said it is a very small minority. Maybe one or two patients.

Two of the questions we asked

“How long will JT live with this treatment?” and “How long will JT live without this treatment?” With treatment for JT’s condition the average patient lives two years. The treatment can cause his own body to attack itself and he could have life threatening conditions such as explosive diarrhea , hypo thyroid, swollen lungs, attacking of the adrenals and/or pituitary gland. 10% of patients on this treatment have serious side effects and 50% have less serious side effects (such as having to take thyroid pills or steroids for the rest of their lives). Everyone has some side effects. Some patients have actually died from the diarrhea!

However, since JT has brain tumors Dr. C recommends a more aggressive treatment using two similar medicines, which increases the toxicity and potential serious problems from a 10% chance to a 30% chance.

Without treatment for JT’s condition, the average patient lives six months.

Today marks the beginning of our story

If you only had six months to live, what would you do with your life? I know this is sort of a philosophical question. But seriously, think about it for a moment… Six months. Would you change anything? Would you change everything? Would you spend more time with your family and friends? Would you have regrets? Would you forgive past hurts to restore broken relationships with those you love? Would you start checking off some bucketlist items?

JT doesn’t want to die. He also isn’t being Pollyanna about this. But he doesn’t want to be so sick that he can’t enjoy life. We have been doing a lot of research on alternative treatments for JT’s cancer. Everything we’ve read and been told by everyone who cares about JT is that no cancer responds the same,  no patient is the same. And JT is not a statistic.

(As I am writing this, JT is in the shower and singing… Rollin’ rollin’ rollin’, keep them dowgies rollin’, Raw Hide…!)

So… he wants to beat this cancer without taking a medicine that is going to make him super sick. Here is a video from a guy that has a similar philosophy as JT:


The reason we say this is the beginning of our story is that JT wants a marker in time that we can all reference to point to his success.

Trust

Now, you may be wondering “Amber, how can you support this decision?” Well, I wouldn’t want to be sick just to live a few extra months with diarrhea either. I believe that God did make our bodies to heal. And based on what everyone tells us, cancer is going to do what it wants to do. Plus, I am clinging to these words:  Every day of my life was recorded in Your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand! And when I wake up, you are still with me!

Cancer can’t change what God has planned for JT. I love JT dearly. He is the love of my life! But God loves him even more and I am going to trust God with my husband’s life.

And so, the beginning of our story…

Looking for the Primary

On Monday the 13th, I was fitted for the headpiece in preparation for radiation treatment. During my visit they performed a preliminary CT scan which will be used for the radiation procedure. The plan is to start radiation on my brain tumors beginning Monday the 20th, Tuesday and then Wednesday.

Once radiation is complete, we will find out the following week what clinical trials are available for this type of cancer. So far, there seems to be a few different clinical trials and/or therapies that have proven to be successful

I’ve had an amazing outpouring of advice on ways to fight this cancer holistically, which I am all for, as well. I appreciate everyone’s input!

So, we continue to wait.

Today, Tuesday the 14th, I met with a Dermatologist for a full body scan. We are in search of the primary source of the melanoma.

My doctor found two suspect moles; one on my back and one on my leg. She proceeded to “scoop” the  suspects off my back and leg and patch me up.  They will be biopsied, and we’ll learn next week if one of those pieces are the primary.

Meanwhile, I am doing well. Spirits high. I feel good and still look forward to what God has planned for our lives.

 

We will keep you posted.

JT

Next Week – Treatment

Amber and I met with the oncologist to talk about possible treatments. At this point, we start radiation next week while doctors are deciding if there are any clinical trials available at City of Hope or UCLA.

We will know more next week.