half way~with a look back

before diagnosis~so pale

A memorable trip~ just before diagnosis

Anointing Service just after diagnosis

Ambulance ride to the airport

Qualifies for wish to be granted

attending a Christmas party 2011

laporotamy incision

19 units of blood~13 units of platelets over 9 monthes

needle biopsy to determine possible infection

welts from toxicity

watching a movie together

supreme team sibs

our second home

newest family member

walking is always easier with friends around 

hair had gotten so thin~he chose to take it all off

and dad followed for support

first road trip

needs something to do...

build a computer! all parts were donated.

fun in the sun

making music together

We are looking at being about half way through Jethenro's treatment for ALL. Looking back I see so many blessings through all the bumps and curve balls that have been handed my son. He continues to be an inspiration to those around him. Thought I would post some reminiscing pictures to remind us of how far he has come

Thank you all for your prayers and support

  

Finally~an update~

Last week blood counts showed  an ANC of 1008.  Back onto oral chemo he went.  Because Jethenro has had so many chemo holds from low blood counts even though he is on 50-85%   in his dosages for chemo, the ONC team is altering his prophylactic antibiotic.  He begins a once a month regimen of an inhaled antibiotic that many leukemia patients use. He will have to go to the hospital as an outpatient for this 'nebulizer' treatment of 'pentam'.
He still has a little bit of congestion in the mornings, but  seems to have squashed the flu bug that landed him in the hospital.

***************************************

~Working on an electronics project~

a hobby he has picked up since building his own computer

Moms Point of View

Jethenro is not completely well yet~his eyes display it.  He has a blood check this week.  Please pray he recovers fully. 

Nope~Can't Hide~

Somehow the government finds you when you 'come of age'~wherever you are~ 

And they don't observe your medical records first...

Yep~ He has a draft number

Sleep!

The fever lasted 24 hours.  The doc discharged him Friday afternoon.~Got home just before sundown.  The whole family was in bed before 10pm.  Some of the family did not get up until 10:30am...it was wonderful to get sleep with no interruptions. Jethenro is still not feeling good, but at least there is no fever. He is on meds, so we hope that  takes its intended effect.

His blood counts are low.  Too low.  The doc says the oral chemo needs to be adjusted. There will be an in-clinic appointment this week for blood check and consult. He will have been off oral chemo for two weeks

*********************************************************************************

UPDATE:

Today Jethenro has been feeling better, so the meds are working...

Second Home Revisited

  Jethenro was hit with a fever yesterday.  It went above the magic # of 101.5* which means an automatic admit to the ONC unit at the hospital. For now he is getting iv antibiotics and Tamiflu as he tested positive for the flu.

This is the sunrise that God created for me(mom) as I left the house this morning

The door to 'home' has a droplet precaution sign. :(

Back to the clinic we go...

 It had been 5+ weeks since Jethenro had been to the clinic for chemo.    I breathed a sigh of relief when  his port was accessed and knew his port was working~for having one replacement surgery~is enough!  Since the NP  no longer works at the clinic, the associated hospital  have been sending in relief doctors to help out. Jethenro had the visiting physician do his lp.  While he was working~one of the regular doctors peaked around the curtain and informed us that he had taught this doctor how to do this procedure while  working at the teaching hospital earlier in his career. So we recognize the close association. 

The blood lab results showed that Jethenro's platelets were low, so even though his ANC was above the magic#, oral chemo has been suspended for a week. Blood recheck is scheduled next week.

Snapshot

A recent haircut shows the disappearance of the curly hair...

Christmas (:

Christmas time! That wonderful time where families get together and spend time eating, laughing, and talking. Typically our family celebrates Christmas in Texas but this year Mom, Dad, Roshi and Jettie decided to abandon tradition and head to the grand state of Washington to spend the holidays with my Dad's second family. Additionally, GYC was held in Seattle, WA this year and since most of the family missed it last year due to Jethenro's immunosuppresion it was decided that this would be an addendum to the family vacation. The first couple of days were spent with family and enjoying sledding up in the mountains of Northern Oregon. Nitha flew in Christmas afternoon and the family was finally together once again :)

.:.Siblings + Snow = Perfect Combination.:.

.:.My daddy and my brother, handsome men no?.:.

.:.Christmas Dinner.:.

.:.Halder Family 2012.:.

.:.Halder Family + Grandparents 2012.:.

After spending a couple of days in southern WA we headed up to Seattle through Snoqualmie Pass with fervent prayers that the roads would be clear. Praise God the prayers of these Southern drivers were answered :) 

GYC was absolutely amazing. The speakers were phenomenal. Seeing so many friends. Meeting up with several families together as a family was such a blessing.

                                   

                                      .:.Jethenro and Nitha volunteering with the registration team.:.

.:.Infamous Seattle gum wall with friends.:.

.:.Friends.:.

 Jethenro had had a lumber puncture two days before the trip north. Several of the staff members at the clinic had expressed concern about Jethenro making the decision to opt out of the flu shot and being around such a large crowd of people. Flu season has started early and several of their patients had already come down with flu symptoms. It was with prayerful and somewhat worried hearts that we continued with the plan to attend GYC. Jethenro faithfully carried around his hand sanitizer and did very well at going to bed at a decent hour. The day after GYC the oh-so familiar symptoms of a cold had come upon Roshi and by the end of a long day of traveling Jethenro felt it coming on as well. The family headed home quickly and when they checked his temp it was 101. The clinic has to be called when his temp goes up to 101.5 so we earnestly started praying that it would go down. He went to bed, rested a lot and drank a lot of fluid and by Sunday evening had a temp of 98.6. Praise the Lord!!!

 Thank you for your continued prayers. They are ever so appreciated :) Hope each one of you enjoyed your holidays!

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.