Something Important...

The Truth 365: Be the Voice for Children

My son is one of those cancer kids who needs your voice.  

This video is a little long, but oh so worth the watch.  Please help me get the message out to raise awareness of the neglected childhood cancer research.  These innocent kids need our help!

If you don't have the time to watch the whole video~the end of the video gives this plea;

Please go to 

http://www.thetruth365.org/petition/

to sign the petition for the reason stated below...

PETITION

Please sign this petition to urge President Obama and National Cancer Institute Director, Harold Varmus, to appoint a pediatric cancer specialist to the National Cancer Advisory Board in order to give a voice to all children fighting cancer!

The National Cancer Advisory Board is the advisory council for the National Cancer Institute. The board helps set the strategic direction for the NCI and has direct input on grant and funding decisions.

National Cancer Advisory Board Members are appointed directly by the President. Currently, there are no pediatric oncologists on the panel.

If we can obtain 25,000 signatures by December 14, 2012 a response to our petition is required by the Administration.

SIGN AND SHARE OUR PETITION TO APPOINT A PEDIATRIC ONCOLOGIST TO THE NATIONAL CANCER ADVISORY BOARD

Thanksgiving

At a recent clinic visit, we had to say good bye to the Nurse Practitioner who has chosen to continue her practice elsewhere. It was a difficult farewell, as she became 'like family' to us. 

We are ever grateful because she really got involved in the patient care, and bonded with the family. We were so blessed to have her available through the hardest parts of Jethenro's journey. 

Responsibility

The day he got his drivers license 

Brought on more responsibility!
He has learned how to maintain a car, and the one he drives needed an oil change.

Hair Dooz

Before and after a much needed haircut. First haircut after I lost it from chemo back in like march.

Still has lots of hair!!

 ( ...Mom checked, and it was early Feb. when we buzzed it off.)

Snapshot

Weekend Special

~Reporting In~

Jethenro had in clinic chemo last week, and rebounded quickly.  We are ever mindful of the intercessory prayers on his behalf.  We are continually grateful for good health, and  there appears to be no visible side affects. He had a cold that held on for a month or more, but it appears his body finally conquered it.

ANC was 1000.

Sibling Celebration

Making the most and best of together time

Surprise!!

Who Jethenro woke up to on his 18th birthday. 

 What an awesome gift. 

 She surprised us all...(except her sister who picked her up at the airport in the middle of the night.)

Snapshot

Curly hair is good for holding study tools~lol

For the Record

Yesterday was blood check day.  

~Mom had a break~

Roshmoti was available to take Jethenro for his blood draw this time.

The results show that he is eligible for a 'chemo hold' 

and recheck again next week.

His ANC is 370

       WBC is 0.92

Quite neutropenic at the moment

Extra caution necessary

But still living life as usual

Update

A week ago Jethenro had 'in clinic' chemo.  The director of the clinic did his lumbar puncture, and it appears he got it just right, for Jethenro had no pain after the procedure.  He normally needs a day to re cooperate, but not this time. To celebrate, he went to class and surprised his teachers. 

It appears that Jethenro's ANC is staying where they want it.

He has been fighting with a cold~but took off on a weekend camping trip anyway with a busload of others. Thankfully dad went along to help support, and in case something happens...

This mom continues to pray that God will protect him and keep him 'under His wings'

He turns 18 this month

Snapshot

Restocking the pill organizer~a weekly chore.

Remeniscing

It has been awhile since we updated the blog.  When there is silence ~we are hopeful that it means good news.

One year ago, this warrior was in frontline, intense treatment.  He was receiving units of blood and platelets throughout September, 2011.  Looking back through the journal we kept~we are all so awed at Gods grace and deliverance for what could have been.

In 1964 a child’s chance of surviving ALL, the most common form of childhood leukemia, was 3%. Today about 90% of children survive. 

The Leukemia & Lymphoma Society

This week Jethenro had his blood test, and he is responding as expected to the oral chemo he is taking, so it feels like there really is nothing to report.  He remains healthy, and although neutropenic, he seems to ward off any colds or flu that may be roaming around.  We are continually grateful that he is doing so well. So far he does not seem to carry long term side effects from the chemo, and for that we thank you...I know there are specific prayers interceding on his behalf, and we believe God's protecting hand is placed over Jethenro because of your prayers.

He has mentioned that maybe he should get a haircut.  Yet he continues to get oohs and ahhs over his bushy curly hair...I have never cut curly hair, so i  asked him if he would like to go get it done at the hair stylist.  He wasn't sure, so it has remained on his head for now. His dad can do a good cutting job also~if he thinks of it...

Had to capture this take on drinking juice from two containers~what to do when there is no other choice for juice in the house.

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.