The Reality

Reality set in today as we sat in the exam room at the clinic.

Jethenro has been feeling good, and being gone for awhile refreshed our souls

~chemo days faded into the back of our minds~

until today when he was accessed for the Vincristine at the clinic. 

He looks great, he acts fine, but he is neutropenic~that is the target, and expected.  It doesn't show, but there is an awareness that he is more susceptible to getting sick.

The good news is that he has gained muscle and weight.  

Snapshot

Concentration

Vacation Time

We took our first family vacation since diagnosis.  It was 14 days, 5600 miles, and 4 time zones.

Made wonderful memories with friends and family.  

team supreme~still active

Tho there were late nights/early mornings~Jethenro stayed well through all the changes. PTL!

Clinic Visit

Best position to be in after an lp!
Jethenro was in the clinic this week for chemo. 

 They hit a nerve in his spine, and that has been a little painful for him.  He continues to have a positive attitude about  the discomfort he experiences from lumbar punctures.  It affects him differently each time he has one.  His iv chemo requires 5 days of oral steroids and that affects the way he feels also.  

I am thankful that it wears off and he gets to feel 'normal and well' more often now that he is into maintenance phase.

For the Record

Jethenro had a blood draw this week, and his ANC was 610~barely high enough to start taking his oral chemo again.  

Other than his occasional clinic visits, all seems back to the way it was more than a year ago.  However if he should get sick and run a fever of more than 101~we gotta get him to an ER, or ONC unit at the hospital ASAP.  

We will be traveling soon, and pray that he stays well all throughout our trip. 

Intercessory prayer is appreciated!!

Stop IT...

...IT being  oral chemo. Jethenro had a blood check, and it revealed a very low immune system.  His ANC is 290 for those that understand the #'s.. This means he is quite susceptible to getting sick, so is staying away from crowds for a few days.  The ONC team puts a hold on oral chemo anytime his ANC  is below 500.  He will get another lab check next week.

Clinic

Yesterday Jethenro had 'in clinic' chemo day. Each time his port has to be accessed, I breath a sigh of relief when I see that it is working properly.  He has had to have it replaced once...and that is enough!!   The NP  recognized from his labs that he  should cut back the dosage on some of his oral chemo. The oral Methotrexate is now at 50%.  

Jethenro started into a second cycle of his Maintenance Phase of treatment. Each cycle lasts for 3 months.  He has 10 more rounds to go.

 We covet your prayers along this journey.

Snapshot

Curly

~We call it chemo curls~

A Year Ago Today...

One year ago today, our family heard a word that changed our lives forever - CANCER.

On June 6, 2011 Jethenro was diagnosed with Leukemia. Today, we praise God for the gift of another year of life for our son and brother. It has been the hardest year of our lives with many tears shed and many days spent in uncertainty. But through it all, our family has learned a much deeper meaning to the words faith and trust.
To read from the beginning click here

June 7, 2011 - Waiting for transportation team to arrive.

All smiles, excited for his first private jet ride

Always with a smile :)

Our baby brother

Texas Childrens Hospital - Houston, TX

We are ever so grateful for the support and prayers of our family and friends

Thank God for amazing nurses

Siblings

The beginning of a long line of chemo

Back at home, first of many visits to the clinic

Family time at the hospital
Jethenro's 17th birthday

December 2011 - Family outing to Nitha's Graduation

May 2012 - First camping trip in a year. Happy and healthy!

"We will celebrate today. Because today marks another year of life God has blessed us with Jethenro." 

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13 

The blood check this week revealed that Jethenro's defenses are borderline~ His ANC  was 528, just above the desired boundary, so  he started the oral chemo again. It makes him a little tired, and does affect his appetite. People comment on how good he looks and we are grateful he is doing as well as he is. There is always lurking in the background all the negative possible outcomes~some could happen at anytime along this journey.  He will be diving into a full schedule of summer classes tomorrow to add to the mix of living as normal as possible.

Helping out in the sound booth during graduation weekend

Check Day

Today Jethenro had his blood checked.  His ANC is 450. Defenses are low.  This means he is on a chemo hold until next week  and  check his blood again then.  That is fine with me! That means no toxic chemo for a whole week! But it also means that he might be  fighting some virus or have a greater chance of getting sick.  

The Refreshing Weekend

A picture from the  weekend camping trip..  There were 20+ people that went hiking, tubing down the river, played volleyball, relaxed by the campfire and ate food cooked on the fire.  There was vespers, church and sundown worships. Jethenro was challenged, but he did enter into all the activities. 

Another 1st

Heading off on a weekend camping trip~with caution~!

Snapshot

The smile of success

Yes, it is a computer that he built and it works!

Brought tears to my eyes

Special music at church~the first time in over a year

IT is HERE!

Anybody know what this is all about?  

{Thank you to those who made this project possible~}

 It has all finally arrived just at the right time~after his final test.

Stay tuned for more information.

Snapshot

Caught in the act

Another Clinic Day

Yesterday Jethenro went into the clinic for a blood check, iv chemo and lumbar puncture. The procedures all went as predicted.  His ANC is 540~a little too low for my liking, but within expected range, so no change in oral chemo dosages.  However, the clinic failed to send in the prescription, or give me a copy in hand to hand carry to the pharmacy of  a particular med he is supposed to take alongside the iv chemo. I even stood around and waited for the Rx~but was told it would be done electronically.  Many phone calls between us,the pharmacy, and clinic have continued since leaving the clinic building yesterday.  Jethenro has missed two doses already. It looks like the Rx will finally be ready this afternoon~  Not  pleased at all  that we had to be so aggressive. 

Jethenro has been tired but attribute it to a busy weekend. 

Snapshot

Dont they look scrumptious? 

Jettie has almost been craving salads these last couple of weeks. Due to having a couple of new nurses in the family he was off fresh fruits/veggies while he was severely neutropenic or at risk of being so. The ONC team never told us he couldnt have such food but  Jettie's paranoid sisters recited well what was learned in nursing school ;) Once he reached maintenance levels the salads came back in full force. As far as I remember Jettie never had a great taste for salads. Oh, he ate them but they werent his favorite. Now... it's a different story. Salads are on the menu everyday. He just cant get enough :) 

Snapshot

Jettie and I finally got the bikes out, pumped up tires, and readjusted rusty brakes and headed out for a bike ride.  We have been having absolutely beautiful weather here the past couple of days. Perfect bonding moments :)

Together...As a Family

This isnt normal. We are eating meals together as a family again. We have all been in church together as a family for 3 weeks in a row. We have time (and ability) to go to the beach together as a family. 
No longer are we getting up in the morning and rushing to get to an appointment at the clinic. In fact, Jethenro hadnt been to the clinic in 2 weeks until yesterday. And even yesterday his visit was simply for a lab draw.

These past couple of weeks have been incredible. Jethenro has had so much more energy now than he did even a couple of months before diagnosis. No longer is the couch being sat on. Instead he is at his computer, doing homework, talking cars with friends, running PA/AV at church, texting me as I am getting off of work asking if we can go bike riding when I get home. As one friend put it... "It's like you were never gone."

Sunday afternoon my dad and I were off work (we were supposed to go camping but it didnt work out) and decided on a family day at the beach. Both my parents and Roshi and I went once at separate times after Jethenro's diagnosis last summer but Jethenro hadnt been out to SPI since before he was diagnosed so it definitely was about time :)

.:.Genuine Smiles.:.

.:.Roshi had a test and spent most of the time studying for it.:.

.:.Mom: "What are you doing?"

Us: "We are digging a hole. Looking for a crab" lol.:.

.:.Sunset over the lagoon.:.

.:.Watching the sunset.:.

.:.Sunset.:.

God is good. All the time. These past 9 months have not been easy but God has blessed and blessed abundantly.

Caught in the Act #2

Was he inspired last weekend by watching others on their ripstik? You can decide.

I know he got his heart rate up in just a few minutes~and used muscles that he hadn't used for a long time....